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CommentWelcome all visitors to the sixteenth vulvodynia guestbook. Your continued support ofthe vulvodynia.com website and the guestbook is much appreciated. Howard I. Glazer Ph.D.
CommentDoes anybody else out there have vulvodynia AND fibromyalgia? I've had vulvodynia forquite a few years now, but think I'm heading into fibromyalgia as well. I would like to know what kinds of symptoms you're getting with the fibromyalgia. Thanks. Deborah
CommentDoes anyone have a feeling that's a bit like cystitis with their vulvodynia, thoughwithout the pain, just the need to go to the toilet all the time? This has been happeningto me for the last week and a half - but at the same time my vulvodynia has been gettingmarkedly better. I have no idea if the two are linked and it's very odd. I don't knowwhether to laugh or cry.
CommentThis web site is a true find! I haven't been officially diagnosised with vulvadonia butfrom all that I've read, this has to be the answer I've been searching for. Now, myfrustration lies in how to find the right Dr. to go to. I live in Maryland - any referralswould truly be welcomed!!
CommentTO WHOEVER ASKED ABOUT CYSTITIS: Yes, I've had bladder problems that have gone alongwitht the vulvodynia. Stomach sticks out (like your bladder is really full). But, youdon't really have to go that much. I've not had the terrible burning that you get with abladder infection; just the feeling of having to go all the time and the feeling of thebladder just being "irritated." The bladder pain comes and goes. It's notsteady, thank God. It seems that taking the calcium supplement helps with this. The oneI'm taking is made by PharmAssure. It's called Calcimate.
CommentTO WHOEVER ASKED ABOUT CYSTITIS: Yes, I've had bladder problems that have gone alongwitht the vulvodynia. Stomach sticks out (like your bladder is really full). But, youdon't really have to go that much. I've not had the terrible burning that you get with abladder infection; just the feeling of having to go all the time and the feeling of thebladder just being "irritated." The bladder pain comes and goes. It's notsteady, thank God. It seems that taking the calcium supplement helps with this. The oneI'm taking is made by PharmAssure. It's called Calcimate.
CommentI have been looking for the Calcimate made by Pharmassure that some of you have beentalking about. I noticed that the Pharmassure has Vitamin D as well. I was told thattaking too much Vitamin D was not good for you but I never knew why. Can anyone out thereexplain to me why? I have been taking Caltrate and it doesn't feel like it is helping any.Any info would be greatly appreciated. Thanks!
CommentHeather, I've read that you shouldn't take more than 400 IU of Vitamin D daily. It isfat-soluble and therefore can build up to toxic levels if high doses are taken for long. To the person who wrote about cystitis, It seems that many women who have vulvodyniaalso have some symptoms of cystitis. One possible link is that both the bladder and thevulva developed from the same tissues in the fetus. My bladder burns occasionally. It allstarted after I took Flagyl (a powerful antibiotic) several months ago, and I think thismedicine damaged my bladder. I got severe bladder burning. Over the months it has gottenbetter, but still now, I get occasional bladder burning. I've found that foods thataggravate it are nuts and garlic. I also had bladder spasms after Flagyl - I could feel mybladder twitching. I also occasionally have frequency, and I get this when the tissue infront of the urethra gets irritated due to vulvodynia. Some women feel better when theytry a low-oxalate diet and calcium citrate supplements.
CommentI appreciate all the information you've provided on your website. I've learned a lotfrom reading your reports. I am now in search of a doctor in my area who is familiar withthis condition (vulvadynia). I live close to the Melrose-Wakefield Hospital in Melrose,Massachusetts (just north of Boston). Could you provide me with the name of a doctor whowould be able to help me? Thank you.
CommentHi Catherine... I see Dr. Elizabeth Stewart (GYN in special procedures) in Roxbury (617)541-6646. Shealso has offices in Burlington and Copley. I also see Holly Herman (Physical Therapist) inCambridge (617)576-3204. I see a chiropractor (for Active Release Technique treatment),Dr. Peter Gale in Needham (7810449-5722. Hope this helps.
CommentHi Kathryn... I see Dr. Elizabeth Stewart (GYN in special procedures) in Roxbury (617)541-6646. Shealso has offices in Burlington and Copley. I also see Holly Herman (Physical Therapist) inCambridge (617)576-3204. I see a chiropractor (for Active Release Technique treatment),Dr. Peter Gale in Needham (7810449-5722. Hope this helps.
CommentHello, The last few comments talking about cystitis type symptoms is making my day. Notbecause you have it, but because I have been going through testing for interstitialcystitis with only the symptoms that have been mentioned. I do not have the urgency orfrequency or bladder pain associated with IC. My pain is pressure and burning in theurethra,especially at the opening. I do have vulvodynia and have had for 11/2 years. Ihave not taken the calcium supplement but will do so right away. I would very much like tocorrespond with those who brought up the issue. You may e-mail me at sallymut@msn.com.Thanks
CommentHello!.soe.keys.on.the.keyboard.are.broken.sorry.Barbra.I.sent.you.a.reconnendation.using.another.nanne.Was.wondering.if.there.was.any.printed.studies.on.birthcontrol,STDs.and.treatnnents,or.genetic.relations.thatI.could.read.about..I.know.there.is.no.known.cause.for.VVbut.would.like.to.read.info.anyway. thanks pinao
CommentCan anyone help??? I have been reading the guest books for the last few hours &can't believe I may have found the answer to what I always thought was some problem onlywe had!!! . Is this my problem?? My experience, while different has many similarities.This will probably be a long & very personal entry, so sorry if it offends! If youcould find it in your heart to read my history & tell me what you think I wouldgreatly appreciate it. When I first started menses at about 14, (now 30) I had troubleinserting tampons. I perservered & was eventually able to use them with somedifficulty. When I met my (now) husband at 19 we found that we literally could not havesex. He is very big & so I assumed we were incompatible or I was very small?? (we wereboth virgins) I did the rounds of thrush treatments etc. After seeing many Doctors oneconcluded I had a congenital abnormality where my labia minora were fused together leavingonly the smallest opening. They suggested stretching with dilators, but this wastime-consuming, frustrating, painful & did not really help as I was in love and waseager to make love!! At 22 I had surgery which I think was pretty straight forward. Theybasically made a cut to separate the labia & stitched them some-how so they did notheal back together. Unfortuntely, my husband & I were still unable to acheivepenetration! It felt like he was pushing & tearing and the pain was too excrutiatingto explain. Maybe the scar? As were both virgins I suppose we just made-do withalternatives! (sorry if this is too personal!) We were married when I was 23 1/2 (still avirgin!). No wedding night love-making- just crying & frustration. The next day, wemanaged it with lots of lubricant but it was painful!!! So, I thought maybe it waspsychological? but I was not raised religiously so why would the marriage have helped? Iput the pain down to "losing my virginity" & our size incompatibility &thought it would improve- were we on the way to a "normal" relationship?.Unfortunately since then, sex has always been like this. I saw one Gyn who wanted to doanother op. to cut the muscles. (no thanks) We saw a marriage counsellor a few years agobecause we were not getting along. The therapist put it down to sexual problems &wanted to hypnotise me to see if I had had a traumatic experience which was causing me to"tighten up". (no thanks) I knew I had not. I also knew I WANTED to make love tomy husband. I would be aroused etc but then as soon as we tried penetration it would causeus both frustration. Especially for my husband who had to take it sooo slowly - we would"lose the magic of the moment" so to speak. Pain upon entry feels like a knife& I tear at the bottom of the opening. The first thrusts, however gentle are almostunbearable. By the end it is a little more comfortable but still agony. By about 15minsafterwards it is not too bad, with a little discomfort the following day, at the site ofthe tear after toileting. We have a beautiful little girl who is 10 mths old. Luckily webecame pregnant after only 3 mths of trying because it was a chore! When we were trying toget pregnant I would often swell up at the site of the tear, too which hasn't happened (inthe very few times!) since. We hoped that after the delivery this "sizeincompatibility" would be resolved. Unfortunately, after a medio-lateral episiotomy(that's another story- let's just say the local anaesthestic did NOT work- I did notstretch because of the scar tissue) & something agonising happening to my tail bonesex is still unbearable. Also, for about a mth after delivery my clitoris felt like it hadbeen damaged- just the friction from standing up against my underwear was horrible! I alsohad pre-ecclampsia & a retained placenta- could this be linked? What I noticed wassome of these symptons are talked about & also some of the entries talking about scartissue and other injuries (my tail bone was excruitiating after delivery but no-one couldhelp- one Gyno said it was probably dislocated but offered no solution- it is still tenderto sit down but no-where near as bad). Also, just by trial & error over the years Ihave found that I need to use hypo-allergenic toilet paper & no soap products as thesemake me itchy & tender. I thought it was an allergy as I have sensitive skin on myface? Anyway, a friend had problems with painful intercouse & recommended Xylocaine 3%gel which we tried last time we made love. It stung abit at first & was stillv.painful upon entry but not too bad during & much better afterwards. We are tryingfor another baby & I am worried this will put a strain on our marriage. Is this theanswer to what I thought was scar tissue?? Do you think I have vulvodynia orvestibulitis?? Also, I did a search in a search engine for Aus. only to see if there washelp here & NO responses were found!! My Dr 1 mth after birth took urine samples &swabs but found nothing, suggested candida of the skin & suggested Canestan cream-which did not help. Also, since birth I can not tell when my bladder is full. I have noloss of control- in fact the opposite, I will feel strange or sick & realise I need togo- does anyone know if this could be to do with my tailbone & nerves?? Has anyoneelse suffered this with this complaint? Now, I only have pain during intercouse notday-to-day. Thank you for taking the time to read this very long entry. Sorry I took up somuch space. Anyway, take care Thank you again...
CommentDr Glazer, I am 21 years old and have suffered badly with Vulvar Vestibulitis for 3 years. I haveseen no less than 11 GP's, 2 Gynocologists, and 2 Professors at clinics, I have had 2operations and an unbelievable amount of medication only to be told, "there isnothing more we can do for you", I personally cannot accept this. Since thesecomments I have moved from my home state of Tasmania to Mainland Australia where I am nowliving in Sydney, in search of some sort of help. It has become unbearable to both myselfand my fiance. We have been together for 6 years now, and for the 3 years we have beensexually active it has never been normal. This is beginning to have a serious affect on mylife , as our wedding in November approaches he has become unsure that he can go throughlife with the little sexual activity I can provide him, and I dont blame him, I amfrustrated. I am so upset, this syndrome may end up ruining my marriage before it hasbegun. I have also conducted a search on the internet for Australian support groups and orrecommended Doctors and came up with none. Could someone please help me to find a goodGynocologist in Sydney, Australia so I can try and continue my life with some normality, Iwould even be happy if I could sit down, or go to the toilet without pain let alone havesex. Looking forward to whatever help you can recommend, I am happy to go anywhere andspeak to anyone, I have private medical insurance, and I just want some relief. Pleasehelp. Regards Renee
CommentTo the Australia women, There was an Australian Doctor here in the U.S. that recommended laser surgery. Hetreated vulvodynia. I was a patient of his and he is a very caring doctor. He had sometrouble with his practice here, because some women said he made them worse and others saidthat he made sexual advances to them. I don't believe the sexual stuff at all! He neverclaimed that he could make us 100% better, it was mostly experimentation, but at least hewas trying very hard to help!. Anyway, he went back to Australia, so you might use him as a resource. Here is the lastaddress I know of: Dr Richard Reid's listed practice address is Level 7 Park House 187 Macquarie StreetSydney NSW 2000 tel. +61 2 9233 3544 Good Luck. I would be going to see him if he was still here in Michigan.
CommentPlease, does anyone know of a physician in the area of ROANOKE, VIRGINIA that has anyexperience with vulvodynia? I don't even know for sure that that's what I have, but manyof your circumstances certainly sound familiar. And my current gynecologist shows nointerest in finding out what it is. First he gave me steroid cream. Next step, surgery!Nothing in between, apparently. At this point finding a physician who even cares and/orbelieves that my pain is real would be a big step forward!! Thank you so much for any infoyou can provide.
CommentAnother question: I've been on Depo-Provera injections quarterly for birth control foreight years. Has anyone heard of a connection between this and vulvodynia? I could go offit and see if it makes a difference, but I really love it as a birth control method.Thanks.
CommentAnother question: I've been on Depo-Provera injections quarterly for birth control foreight years. Has anyone heard of a connection between this and vulvodynia? I could go offit and see if it makes a difference, but I really love it as a birth control method.Thanks.
CommentPatti- There's a young lady named Jacquelyn who contributes to various "vulvodynia"boards whose symptoms all began with the depo shot. She is certain there is a link. Yoursymptoms began long after you took it for the first time. I'm wondering if you have takenany antibiotics recently. An eleven day course of Keflex is what did me in. I have hadthis conditionsince last May and have yet to find a caring, knowledgable doctor todiagnose me correctly. I don't want to know I have "vulvodynia"! I want to knowwhat is causing it, and what steps I can take to cure it! I refuse to use any more cremesor pop any more pills until the organism has been correctly identified.
Comment
CommentRegarding the bladder burning--I didn't experience that until I took a course of Ciprofor a supposed e-coli "infection" back in June and then it went away after abouta week. However, the redness and pain/burning in my vulva remained. Then I developed anEXTREMELY painful bladder infection in Oct. and had to take another antibiotic, Macrobid,to cure it. since then I have felt bladder discomfort off and on but it goes away and isnever as bad as a full-blown infection caused by e-coli. I'm convinced there's somethingin there causing this discomfort, and I'm almost certain it's a type of yeast that hasattached itself to not only my vulva but now my bladder lining. I will not have theanswers though until I locate a knowledgable doctor who makes DIAGNOSTIC TESTING apriority before beginning any treatments.
Commentthis is for sallymut@msn.com I am 42 years old and have had vulvodynia symptoms andtreatments since 1992. I, too, have had terrible problems with cystitis lately, and theurgency and frequency are driving me crazy. I wrote about this in the prior guest book,and I haven't read too many replies until this book started. My vulvar-vaginal symptomsare relatively calm lately, after 8 years of pain, although sexual relations are not assporadic as they used to be for fear of pain..I had the mini vulvectomy and it really didhelp. I had the laser surgery prior to that and it was more than I bargained for. Anyway,I am very frustrated by the bladder symptoms. I am somewhat of a prisoner to the bathroom,or at least need to know that there is one close by. I have tried DMSO instillations,Pyridium, Detrol and Ditropan. Sometimes I think that the Detrol helps but I still havebothersome symptoms, and I really want to feel normal again. These problems started InOct.2000. It doesn't sound like too long when we all suffer for years with the Vulvodynia,but to go the bathroom 12 or more times a day is frustrating, not to mention a nuisance atwork. Any suggestions??? I have recently started the calciium tablets, and the low-oxalatediet is next. Please respond if you have any ideas..
CommentThis is for Patty: I do feel there is a connection between hormones and vulvadynia, butmy view is the opposite of what you are considering. I have been given the hormone patchand 0.5 mg' estrace by mouth daily and I have had a great improvement. I feel that low estrogen is causing part of the problem for me. I had a hormoneimbalance and this hormone therapy has helped a great deal.
CommentFor those suffering from cystitis symptoms: Have any of you been tested for intersitialcystitis? I would recommend going to one of the IC sites on the web and read about thesymptoms and some of the treatments. To Bridget: I am currently on Elmiron and Atarax forIC treatment. I have been taking the meds for 5 months with little effect. That is why Idoubt I have IC. I see a urologist at the KU Med Center who sees many women with bothvulvodynia and IC. His name is Dr. Tomas Greibling and I liked his approach and I wasconfident he knew what he was talking about. Jean
CommentTo the lady who asked about Fibromyalgia. My sister-inlaw has suffered for severalyears with this disease. She has muscle weakness and pain around the middle of her body,torso. A blood test can conferm this auto-immune illness. The difference between VulvularVestibulitis and Vulvodynia as I have read is with Vulvodynia there is visible tissuedamage such as tearing. Vestibulitis is pain associated with the Vestibule( vulva orentrance) or the vagina. Don't let a Doctor tell you it is all in your head , both ofthese illness have been well established. My wife's Gyn has said that in thirty years hehas not seen a similar problem with vulvular tears. Just because your Gyn is not familarwith these conditions does not mean they do not exist. My wife went for a pap test todayand asked about the hormone connection at my request. Her Gyn thought about it then agreedto check her Estrogen level. I can't understand why these doctors are not more agressivein doing blood work specifically hormone levels. They don't hesitate giving birth controlpills for years, surely there is a chance of some connection here. To some of the ladiesnew to the site, check some of the prior guestbooks they are a wealth of information. Youwould be amazed at the similar treatments advised and medications used. My wife has usedCiprol and Macrobicid to mention just a few. Someday the connection will be made as to thecause of both these illnesses. Best of luck to you all.
CommentFrank, I have always heard there is no blood test to determine if you havefibromyalgia. I have heard you have to be mapped. What kind of blood test is this? If youhave more information I would love to hear about it. Thanks, Diana
CommentHi all. Just want to give everyone an update about my condition. Tommorow will be week#5 since my surgery. And I want you all to know that I am feeling better and better as thedays go on. The last time I updated you all was 3 weeks ago. I mentioned that the top leftside was hurting a little. Well I must say that it barely hurts anymore. It just tinglessometime but that's because my stitches are discolving. I can feel my muscles have tightenup(which my doctor informed me about). He said that I can't have sex until 5 weeks afterthe surgery(which is tommorow, but I'm not sexualy active right now anyway)He said thatwhen I do have sex, I'll have to loosen up the muscles again as they were before thesurgery. He said it'll hurt the first couple times because that's where the surgery wasperformed and I'll have to get my muscles loose all over again. But I just want everyoneto know that I'm fine. If anyone is out here in Arizona and you're thinking about havingthe surgery, my doctor is in Tucson. If you're interesting in knowing his name and wherehe practice, then just message me. I'll post back next week to inform you all of mycondition. Take care everyone. Goodnight!
CommentTo Diana: So much for third party information, I knew my sister-Inlaw suffers withfibromyalgia so I asked my wife about it. I was assured there was blood testing to confirmthe illness. You are of course right and I am wrong. I deeply apologize for themisinformation. I did however research several sites on the Web. I learned that there arediagnostic guidelines used to label a sufferer. I also learned that treatment includesdrugs that boost the serotonin levels . Drugs such as Elivil, which is also given tosufferers of Vulvodynia. Once again I am sorry for assuming my information was correct andnot checking it out more thoroughly. Thanks for questioning it.
CommentHello, My name is Stephanie, and this is my first time seeing the vulvodynia website. Ihave been a sufferer of vulvodynia for about six months now and now my doctor says that Ialso have vulvar vestibulitis. I started out with my regular MD who thought I wassuffering from a bladder or urinary tract infection in September. Then, I went to anotherdoctor that said I had a bacterial infection (of course I had one of those before, and Iknew what it felt like). After that I still had the same uncontrollable burning. Next, Iwent to my gyn twice before she said there is nothing I can do for you because you are inperfect health. Well, what a thing to say to someone when you know you are experiencingsomething you never have before. On my own, I decided to see a specialist that dealt inurology, pelvic support problems, and biofeedback. When I called for my appointment, thenurse knew immediately what I was talking about and mentioned that I might have a problemcalled "vulvodynia". Of course, I didn't know what this was, but the nurseassured me that they say many patients that had the same problem. Little did I know thatthere was no cure for it of how long it took for some of the symptoms to "goaway". I was devastated. I first started using a cream that was a compound calledCromolyn 12% and Elavil which I was very uncomfortable using because I didn't think I wasdepressed (although depression has kicked it. I am now up to 50mg of Elavil a night, and Iam having horrrible side effects from it such as sweating, moodiness, hallucinations, etc.just to name a few. The cream and Elavil did seem to help me @ first, but then I gotworse. Now, I am using Estrace that doesn't seem to work either. I will be going back tomy doctor on Monday to see what else I can try. They have recently visited the Universityof Wisconsin that has done a study on vulvodynia. My doctor also gave me the low oxalatediet which I have not yet to go on because I have been so discouraged from everythingelse. Has anyone had any success w/this diet? When I first logged on to this website, allI could do was cry because for some reason I thought I was the only one out theresuffering from this that didn't have a cure. I have only been married for nine months, butmy husband has been very patient and understanding. I haven't had to much pain having sex.I just don't want to have it now, and that was one other side effect from taking Elavil.Most of you have had many more years w/this, and I feel like my problem is just minor, butto everyone out there who deals w/this everyday I do feel your pain, and I will continueto pray and ask God to help each and everyone one of us who has this problem. It feels sogood to just get some of this off my chest. So far today, I have been free of pain andburning which I thank God for. If any of you have anything that you have tried that helpsthis burning, I would appreciate the advice. My job requires prolonged sitting, and I knowwhen I'm not sitting the burning seems to "go away". I have tried standing upmore everyday which makes me look like an idiot, but I do it anyway. Well, I'm sorry thisis so long, it just feels so good to vent. Thanks to everyone who has shared informationon this website. More pain free days to all, SAC.
CommentTo Stephanie: This is a very good site and if you have the time to read some of thelast guestbook you will get a history lesson on these two diseases. My wife has theVulvodynia which involves tears to the vulva. Many of the ladies here including my wifehave used countless topical and vaginal creams including the Estrace. There doesn't seemto be any miracle cure , the Doctors try what they feel might give relief includingsurgery. While you may have similar symptoms everyone is different. Some ladies havesuccess with surgery and many do not . Try not to rush into anything. I try to besupportive to my wife but there are times when I slip up. When I catch myself I think whatwould happen if I had the problem, it puts things into perspective. Best of luck.By theway there is a lag between the time you post and the time it shows up, so be patient.
CommentHere is the corrected url for MEDICAL CELIBATES NETWORK- "MCN"
CommentTo Katrina and Renee, You sound like you need some good advice so I suggest you contactNational Vulvadynia Association at http://www.nva.org orThe Vulvar Pain Foundation at htpp//www.vulvarpainfoundation.org/ I know nothingpersonally of Doctor Reid apart from the fact hes been heavily ctiticized in the vulvarpain forum.Laser surgery is generally not recommended and before you decide to let himtreat you I suggest you ask the above associations about him.
CommentDear fellow suffer's This is my second entry and just wanted to share how I have doing and what I am usingto live with Vulvodynia.I have suffered with for 3 years now and not until late last yearwas I diagnosed with Vulvodynia. I was releived to know what it was but not at all happyto know there was no cure! My husband has been completly supportive and is patient inwaiting between times of intimany for me to heal up. I have joined a health work out shopwhere we do aerobics and work out with wieghts ect. I feel it helps me in the vulvodyniaarea. I go three times a week and I have been getting into shape besides. I am 45 and nowis time when you begin to feel things falling apart if your not in shape and thisaffliction has caused me to take a real serious look at my physical condition and I wasout of shape and had gained 30 some odd pounds. I am currently taking vitamines and eatingbetter. this is a list of things recommended me to take by a women who works at thenatural food store where I shop. I explained to her my affliction and she was veryunderstanding and helped me understand how important it was for me to take care of my skinfrom the inside out as well as the outside. She advised me to take 1000mg of vitE and1300mg Super Primrose a day. Also to drink plenty of water which I do anyway. I Also takeCalcium magnesium citrate name bran by Solar. I take two of those a day. When I feel ichyin that area I use Lotrisone cream twice a day and after I have intercourse I use a diaperrash ointment as funny as that may sound it helps to calm the area down and protects itwhen I urinate after sex, it can sting when you urinate after sex. I wash with warm waterand Aveedo bar, dry well then add the diaper rash ointment. Oh, the name of the cream isDiaper-Care by Weleda. I bought it in the natural food store when I was there. I buydifferent creams and ointments to try some work others do not but this one seems to workfor me. It has Zinc oxide 12%, water,almond oil,lanolin, hydrolyzed beeswax,extracts ofcalendula and chamomile flowers. I am always apply vitE and have also mixed the vitE andthe Primrose together. My OBGYN has me taking AMITRIPTYLINE 10mg a night. It helped tobreak the pain cycle and I can say it is under contol. It got so bad I thought it woulddrive me out of my mind. I know why they call it the burning bush!! I am still on the lookout for anything that will help me live with this affliction but I am thankful that atleast it is under control and my husband is a patient and loving husband. I have alsorealized some very important things while suffering with this. How wonderful my husband isand how important it is to take care of my body.How we take these things for granted soeasily. Now they are very important to me and have caused me to appreciate them and totake better care. Thanks for your patients in reading this. If you have any questionsabout what I have written leave me a message. God bless, Cindy
CommentThanks for the info about the cystitis type symptoms some of you have with vulvodynia.I have been diagnosed with a kidney infection after two weeks of needing to go to the looall the time, but I wonder in fact if the problem is associated with my vulvodynia. I amgoing back to the docs tomorrow (as the antibiotics don't seem to be doing anything) so Ishall ask, and I will pass on any useful info I get. In the meantime, can I mention awonderful cream that's really been helping me in the past few weeks. Its Bach's RescueCream by the same people who make the Bach's Flower Remedies. It's incredibly soothing andhealing - the best thing I have used!
CommentROCK ON VULVAS
CommentAm fortunate to have found this web site. A referrel to a compassionate GYN in theLakeland/Tampa, Fl. area would be wonderful. I simply must change doctors and find someonewho can help my situation. Received info from the NVA today, but they need a $35 fee for areferral, and I simply cannot do that right now. Our ins. co. folded, and has left us withmany unpaid bills. Thank you in advance for any help.
CommentTo J.J.: I hope someone will give you a good referral , I tried to search the web forGyns in Fl.. Not much luck. There is a doctor referral site which also has a diseasesearch of course neither Vulvodynia or Vulvular Vestibulitis are listed. This may not bemuch in the way of advise but I would ask any potential Gyn you are considering if He orShe has treated for these illnesses. My wife's Gyn has been in practice for thirty yearsand never saw it until my wife. Don't hesitate in asking questions before you committ to aoffice visit. Most of all don't let any doctor tell you this is in your head. The ladieshere like yourself can attest to that. Most doctors will prescribe some type of creameither with or without hormones, a course of anti-fungal medicine and elivil to relievethe nerve inflamation. Read as many of the other guestbook posts as you can they will giveyou a good foundation to work from. Best of luck.....
CommentWell I have had this horrible disease for 3 years now and I am tired of it. I havedecided to invest in the biofeedback unit that Dr. Glazer has on this site. Anyone used itbefore? Did anyone had success with it? My VV comes and goes in severity. I can go forlong periods of time and it just doesn't bother me, except if we try to have intercourse.Then I remember why we don't very often. I have to be honest it is hard on even the bestof marriages. My husband is very supportive, but I know that if he were to ever leave meno one would ever want to be with me again. Can't say that I would blame them. I don'tthink my husband would ever do that, but I have to tell you one day I was feelingparticulary blue and I asked him, if he had meet me and knew I had this would he havemarried me and he said "No." Boy that hurt but, I knew he would not lie. I do have trouble with my bladder and my gyn keeps wanting me to see a urologist, Iwon't because I don't think this is IC or anything like that. So I am going to put mymoney on Dr. Glazer, so if anyone has anything to say to save me the money, do it now. Ifnot I will let you all know what happens. In the meantime, I pray for a cure. With love and hope, Lyn
CommentTo Lyn j: I don't know how long you have visited this site but I've read many of theposts. My wife suffers from the Vulvodynia which has tearing as a symptom. I've read thatmany folks believe there may be nerve impingement that causes V.V., some do pelvic floorexercises. This may not be of help but I have read for years that doing Kegel exercisescan help with bladder control problems, aside from any help with this the exercises mayrelieve tension in muscles. There is a relaxation exercise in which you tense then relaxdifferent muscle groups in doing so you consciously relax muscles you may not be awarewere even tensed. Might be worth a try. I don't know if it's a guy thing but I'm sometimestoo honest myself. Don't dwell on the negative. Good luck.
CommentFrank: I am far past the stage of dwelling on this. Believe me I have been there and I won'tgo back. I don't have bladder control issues. My problem with my bladder is the spasms andgeneral pain. I have done the kegels and they are certainly great exercises it is justthat they don't help with spasms. I do think this is a nerve issue and that is why I justwonder if it is possible that Dr. Glazer's biofeed back may just work. I must say it is alarge sum of money to just throw away. However, if it only helped just 30% I would bedelighted. Thanks for your response I hope all the guys married to women out there wouldbe as concerned as you. I know my husband is and I am thankful for that. With hope for our future, Lyn J
CommentFrank: I didn't answer your question. I have visited this site on and off for two plus years. Lyn j
CommentHi. I still haven't found anyone in the way of a OBGYN in Sydney, a good one anyway!!!Well I have another question. I have a feeling that my "pill" has contributedto, if not caused my VVS. Has anyone else heard of this happening? This all started about6 months after starting on the pill. Nothing else had changed in my situation that I canthink of, I wasn't on any medications or anything, then after about 6 months it startedand it was gradual so it seemed like the longer I took the pill the worse I got. I havebeen on the "pill" now for 4 years, I stopped taking them a week ago, I knowthat I feel different I just don't know how.(Maybe I'm subconsciously hoping for amiracle) Could you please email me if you have had an experience you think may have beencaused by the "pill" or if you have an opinion of whether or not it is possible.Ta Renee
CommentLynn, You went to Tucson to have the surgery? I live here in Tempe, and I've seen Dr. GordonDavis in Phoenix a few times. Everyone says he's good, and I'm just wondering why youdidn't go to him. Is there something I should know? Should I see one of the GYNs inTucson? I didn't think much of Dr. Davis--he reccommended the surgery to me after my 2ndvisit. Do you have vestibulitis or vulvodynia? Did you have pain just during intercourseor all the time? Thanks for your help.
CommentHello ladies!! I know that it's been a while since I've written and I'm so sorry about that. I've notbeen feeling well as of late. Last week I had a vaginal and vulvar biopsy to see what all is going on b/c of the factthat I pulled my insides several times in the last month. I am hoping that the vaginalbiopsy will let me know whether or not I have endometriosis in my vaginal area so that wecan have that removed. I'm hoping for a laparoscopy real soon. In addition to the vulvodynia and the endometriosis I also have a hormone conditioncalled Polycystic Ovarian Syndrome. I'm writing to ask if there's anyone else out therethat has all 3 of these conditions that I do. It would help me a lot to be able to talk tosomeone with all of these conditions to find out how they cope from day to day with thisespecially on the bad days. Also, I was just curious to find out if anyone with vulvodynia ever had success withPain Management. I'm just curious b/c I am wondering if things have changed to a degreeabout the interest of gyn problems among Pain Management drs. The reason for thiscuriosity is b/c all the research that I've done especially of the drs in my area none ofthem will touch gyn problems. If I were to be evaluated by a Pain Management dr I wouldhave to try even harder to find someone that would let me keep the pain medicationcombination that I have that works to help me function when I'm having a real bad flare upof my vulvodynia. The reason that I must keep what I've been taking is not only b/c itworks but b/c I can't do any thing else that Pain Management offers. I have other healthissues that keep me from taking other kinds of meds, as well as issues that isn't totallyhealth related that keeps me from doing the non-medication route. I get the results of my biopsy on the 28th and then we will find out what the next stepis. Everyone please feel free to e-mail me privately any time as well as on here. Take care everyone.
CommentHi everyone...I have posted here before, but just wanted to give you an update...I amcurrently seeing a dermatologist in Manhattan, NYC who has a different approach and theoryabout vulvodynia/vestibulitis, and it seems to be working. She sees 50-60 women a weekwith this problem said that 85% of the people she sees get better. Her name is Dr.Peacocke, phone # 212 326-8465. She has treated me with an antibiotic plus Diflucan for 2weeks, then 3 weeks of boric acid capsules. I am currently on the 3rd week of the boricacid and I am greatly improved. I have also been able to have intercourse again, for thefirst time in months! And it was much better. I would encourage anyone who has beendiagnosed with vestibulitis or vulvodynia to try this treatment, so far it has definitelyworked for me. Especially if you believe this was brought on by taking antibiotics. Imyself got this after a 5 week course of Terazol, Flagyl, Zithromax,and then Cleocin, allto cure a stubborn "yeast infection" that I had developed. I am going back tothe dermatologist next week, and I think she may prescribe an estrogen cream as the lastpart of the treatment. I also have a girlfriend who has had vestibulitis longer than me,and this treatment is helping her as well. I know that there are different forms of this,and that what helps one person may not help another, but I hope that by sharing thisinformation someone else may get better. I am convinced by reading all these posts thatpart of this illness is caused by a hormonal imbalance, which is what the last part of thetreatment addresses. Best wishes to everyone!
CommentHi Rebbeca, Thanks for the message. To answer your question, the only reason why Ididn't go see Dr Gordon is because he is not contracted with my medical insurance. And DrHatch in Tucson is. So I travel 2 hours to go see him. I have heard that Dr Gordon Davisis a good Dr. Dr Hatch recommended him but I told Dr Hatch that he's not contracted withmy insurance and that's why I don't go visit him. About my surgery, I had my surgery 6weeks ago(this comming Friday) and I feel so so so much better. But I still have about 3more months to "Completely" heel. But so far, so good. I did have vulvodynia,but I have not been affected by it in about 7 months now-Thanks to the vanicream(mysavior). I had vestibulitis and i would hurt every one in a while. I have not had sex in 11/2 years. I would just be in pain just because. But now since the surgery, I candefinitely feel a change for the better. Message me back if you want to know more. I'dalso like to say that I've tried the vanisoap for the very first time last night and itworked just fine for me.
CommentMy name is Tracy, I am 34 years old, mother of 2 and married. I have been sufferingfrom migraines since i was 11, I am allergic to caffeine and asprin so many of themedications on the market i can't take. will i be stuck with these headaches the rest ofmy life? Is there anything that can get rid of them besides demeral? Please help, thishappens about 7-10 times a month and makes it very difficult to run a home and family.Thank you for any help or information you can give me.
CommentDoes anyone know of a doctor who specializes in vulvodynia/vulvar vestibulitis in theAtlanta, Georgia or Memphis, Tennessee area? If so, I would be more than happy for you tomessage me back. Thank you.
Commenthow good it feels to find this site...thank you for being here. i have been sufferringfor about 8 months now with VV. it has been very tramatic. i am 23 years old and i fearthat i will never be able to be in a sexual relationship with anyone. this past weekend iwent to the cleveland clinic and saw a gynocologist who informed me that i had VV. he hasput me on estrace, and i am trying the low oxalate diet as well as the citracal pills. iam a vegetarian and am having a hard time finding foods i can eat now considering the lowoxalate diet restricts most of the veggies i normally eat. has anyone out there gone onthis diet as a vegetarian? if so, please share...i have so many questions about specificfoods that are not on the list my dr. gave to me. please email me if you know about this.one last question, what about pregnancy? has anyone gone through a pregnancy with VV? ican't imagine the pain of delivery having it. alright, be well everyone...adding my loveand support... MC
CommentMy doctor wants me to take the colposcapy test because of a few abnormal cells found inthe past 3 or 4 pap smears. I want to know what this test is looking for. I searched theweb for colposcapy and this web site was the only hit I received. I am not having anyabnormal symptoms, other than I was bleeding for almost 3 weeks when I went to the doctor,and he put me on the birth control pill and my monthly periods have regulated. No moreproblems. I thought I was going thru menopause. I'm 43. Anyways, what is this test usedfor? Thanks so much! Darlene
Commenti can't get into the chat room. can you tell me what i'm doing wrong. i would love totalk to somebody that has my problem.
CommentTo Darlene: I was able to find sites on the Web using the word " colposcopy". Sometimes just one letter will make the difference. From what I read the test isfor cervical cancer after a abnormal pap test. A special microscope is used to view thecervix. Best of luck with the test.
CommentI first posted to this site back on 4/99. This is my third time posting here. I amhoping that someone has a positive story that she can share with me. I have suffered fromvestibulitis since 1998. I was able to contain some of the pain. I suffer only on the leftside now, but the burning and pain is still there. Unfortunately, elavil does not help me.I have been on this medication for about 4 years now for migraines/chronic headaches. Itonly helps me sleep now. I am now 25 and I also have fibromyalgia (since I was 18). Istarted physical therapy to help deal with the tightness and pain and to help the pelvicmuscles. I now have pain in my abdomen (for almost one year) and I think it is because Ihave both medical conditions. Like a lot of you that have posted, my stomach is swellingbadly. If someone has had a positive experience with physical therapy, please let me know(I could use some cheering up). I am also on a cream called EMLA for the burning and Iwould like to know if anyone else has been on this. All of this has put a terrible strainon my life and I am not able to be intimate with the person I love. My doctor has notmentioned surgery, but now I am wondering if that is the only option if physical therapydoes not work. I also wanted to tell Deborah (who posted on 3/5), that if she wants somemore info on this and fibromyalgia, please email me. I also wanted to tell Ken that Ithink it is great that he is understanding. The best thing to do is to make sure that sheis comfortable and always let her know that you will love her, even with this condition. I hope that one day soon, all of us will find the relief that we need. I am glad tostill know that I am not alone. I live in Chicago and if anyone needs any info on doctorsor wants some more information, please let me know.
CommentTo Holly: The pain in your abdomen and the swelling sounds like an ovarian cyst. Idon't want to alarm you, but I would get it checked out as soon as possible. There is aprocedure called an intravaginal ultrasound that should be able to tell your doctor if anovarian cyst is causing your problem. I don't want to alarm you, but if it is a cyst thereis a slight chance it could turn malignant. So don't put it off -- the ultrasound ispainless.
CommentHolly, I have used EMLA for a year but have only used it on non mucous membrane skin. Ihave vulvodynia but not VV. A lot of my pain is in the pubic hair. EMLA seems to reallycalm everything down for several hours. I have had not side affects that I am aware of. Imaybe use it 2 times per week. I also suffer from interstitial cystitis. It seems likemost of us suffer from a double whammy of afflictions. Good luck! Jean
CommentOkay, I need some help here Do any of you fellow VV sufferers (besides myself) havedifficulty "getting in the mood?" It is so depressing. Ever since I have hadthis (1 year ) I am so sensitive to contact down there that I just don't seem to desire tobe with my boyfriend. I have been using Estrace for about 3 months. Only if I use 2%lidocaine can I do anything. I just don't feel like a normal woman anymore and it stinks.
CommentLM, I have also been on Estrace for about three months. It has not helped me @ all, andas far as being intimate, it takes a lot to get the desire. It is very frustrating. Justtake your time and relaxing is the key. As my doctor says, make sure you use plenty oflube! Also, for those of you out there who have burning for prolonged sitting, I have beenusing a "donut". The "donut" is used for women who have episiotomiesand are trying to get the pressure off. I sit a lot @ work, and it has helped metremendously.
CommentLM or anyone else that can tell me, what is lidocaine, and what does it do? I'm sort ofnew @ this. My doctor has given me several different things, but I have never heard ofthis. Thanks for any information.
CommentLidocaine is a topical pain killer. Check out the " WedMD " site and you canresearch many drugs. Precautions include making sure you are not allergic to this medicineand being careful when using it on inflammed or broken skin. Keep it away from your eyes..
CommentTo KR: Thanks for your concern. I have had an ultrasound more than once and the cystswere normal and both my primary care doctor and my gynocologist said they would go away. Alot of the swelling is from elavil and the muscle pain I think is related to vestibulitisand fibromyalgia. (or at least my PT thinks that). I first saw a GI doctor for the pain,but I do think it is related to all my female problems. For everyone who has trouble "getting in the mood," you are not alone. I havebeen having difficulty with this for so long and I too, do not feel like a complete woman.Estrace did not help me and lidocaine did not work which is now why I am on EMLA. I havenot tried to be intimate yet, so I have no idea if it helps in that regard. I use it atleast twice a day. Does anyone know of any support groups in Chicago?
CommentTo KR: Thanks for your concern. I have had an ultrasound more than once and the cystswere normal and both my primary care doctor and my gynocologist said they would go away. Alot of the swelling is from elavil and the muscle pain I think is related to vestibulitisand fibromyalgia. (or at least my PT thinks that). I first saw a GI doctor for the pain,but I do think it is related to all my female problems. For everyone who has trouble "getting in the mood," you are not alone. I havebeen having difficulty with this for so long and I too, do not feel like a complete woman.Estrace did not help me and lidocaine did not work which is now why I am on EMLA. I havenot tried to be intimate yet, so I have no idea if it helps in that regard. I use it atleast twice a day. Does anyone know of any support groups in Chicago?
CommentI am 21 years old and have been suffering from vulvo-vestibulitis since I was 18. Theonset started following an initial herpes outbreak I had. Ever since, intercourse has beennearly impossible. I'm getting married, to the man I have been with since before thishorrible syndrome started, in one month. He is quite supportive and I feel very lucky tohave a man that can deal with this. This disease has caused major depression in my life. Istarted using paxil one year ago. However, my doctor is urging that I ween myself off nowto try and deal "on my own." The paxil helped my depression-didn't help thepain. During the entire year I was on paxil I never visited this site, I felt content eventhough I have this disabling disease. Now that I am off of the paxil...I feel I cannothandle it very well. All the time wanting to return to an anti-deppressant. I don't knowwhat to do. I really want to be happy on my wedding day. It seems my frustration andsadness in regards to this disease are just taking me over. I would like to praise Frankfor his pro-active stance regarding his wifes vulvodynia. One question, I am in the SaltLake City, Utah area--anybody know of a good doctor around here? Best of Luck
CommentDarlene- I have had a colposcopy done. What it is, when your pap smear comes back with abnormalcells, they essentially do another test to look closer at the cells. Durning thecolposcopy, they douse your cervix with iodine. The iodine dyes the areas of the abnormalcells so that the doctor can see them easier. He/She then looks through a microscope atthe cells and takes a sample of anything that looks abnormal. But the sample isn't just aswab. They actually pinch a piece of lining/skin out. A little cramping and pain with it!They then take these samples to the lab to determine if you have displaysia. Displaysia isbasically the beginnings of cervical cancer. It is the cells changing (which I guess theyassume is into cancer). There are three different stages of displaysia (mild, moderate,severe). If yours is considered moderate, they will try to let it go away on it's own. Ifit is moderate to severe, they will remove the abnormal cells by way of cryotherapy(freezing the cervix) or the LEEP procedure (which I've posted about before) where theyuse an electrical loop current to scrape/burn out the abnormal cells. It is a walk-inprocedure, takes about a month to 6 weeks to heal. Although, not to scare you, just beinghonest, I am still having more pain since I had the LEEP, than before I had it. Also, before they try to move it this far, most doctors agree that displaysia is causedby the STD Human Papillova Virus (HPV) which is genital warts. You may never have anysymptoms other than displaysia. They say that basically if you are sexually active, youprobably have HPV. They can test you by way of the Thin Prep Test (not a regular papsmear) to find out what strand of HPV you have. There are over 30 different strands. Someare considered high risk for cancer, some are not. Unfortuneately for me, I followed myold doctor blindly. I have since been tested for HPV and I have a strand that is notconsidered high risk for cancer. Which is good, except that I had the LEEP done withoutreally needing it and now I am having a lot of pain. Anyway, I really wanted to share my whole experience with you. I've kind of rambled, soif you have any questions, feel free to e-mail me or post it here on the guestbook. Best of luck Christi
CommentBecky - you posted a note a few days ago about boric acid being helpful for yourvulvodynia. Thanks so much for sharing that. I read the following on the Web last year andI must admit I though the woman was confusing vulvodynia with thrush! I'm sorry I was sojudgemental now as I think perhaps your doctor and this woman may have hit on something wecan all try. Here's what I read: "I have been suffering from Vulvodynia for almosttwo years, most of that time without even knowing what to call it. My worst symptoms wereunbearable itching in the vestibular area, raised painful patches and the inability tohave intercourse. After going through the usual torment of ignorant, unsympathetic doctorsand large useless medical bills, I found the only expert on the disease here in Finland,Dr. Jorma Paavonen, who provided support but unfortunately, no relief came from theexpensive Sporanox pills for some six months. However, less than a month ago, a girlfriend suggested a "folk remedy" to methat had cured her of yeast infections. She suggested simply buying empty gelatin capsules(from a health food store), filling them with boric acid,and inserting one vaginally everynight. I was VERY skeptical, but had nothing to lose. Within ONE week, my itching had subsided significantly; less than a month later, ithardly bothers me at all. This -- after more than a year of waking with blood under mynails from scratching all night. But the best news is: I saw my vulvodynia specialist this week and he was absolutelydumbfounded at the sudden and rapid decline in the vestibulitis! I had been a"textbook case" of vulvodynia, and now he found NO bacteria, NO yeast and NOsign of infection in my vaginal sample. In fact, my doctor asked me to tell people about this miracle... I can only hope that this might work for someone else. I don't know how much good itwill do for people who only have burning and not also itching, but there appears to be noside effects from this whatsoever -- and it's CHEAP -- so I would really recommend tryingit." I'm definitely going to try it! I like a lot of woman developed vulvodynia after a badbout of thrush and being as boric acid has been used for thrush for years there has got tobe a link somewhere, I suspect.
CommentTo the lady from London, good for you. You are making the best of a difficultsituation. I agree with your advise to not suffer in silence, any man worth being withwants to know if you are in pain. Certainly any man worth staying with will work with youto reach a resolution. I would like to talk on the " Boric Acid " cure. When mywife and I saw the Expert on Vulvodynia he prescribed boric acid suppositories to clear upa yeast infection. We had them made at a compounding pharmacy and they did clear up theyeast. My wife has used them twice since the first time. I did ask two differentpharacists if I could make them myself out of gelatin capsules and boric acid, I was toldthey not only contain boric acid of pharaceutical grade but also other ingredients tobuffer and control dissolving. I don't know if this was truthful or not but I don't takechances with health. Regardless of the yeast my wife still gets recurrent tears to thevulva. There doesn't seem to be a cure available at this time. Good luck to all and bewary of cures.
CommentI am new with VV, diagnosed a month or so ago, but have had it for at least threeyears. I am not happy with my GYN. Does anyone have a referral in the Central Texas areafor a GYN/Doctor that is knowledgable in this area.
CommentIt is so upsetting for me to read the posts from hundreds (thousands?) of womensuffering like I did for so long. I am 36 years old and until five years ago I sufferedfrom chronic vulvar pain (burning, itching, swelling, etc). I went to a *lot* of doctorsand heard many say that they "didn't know what else they could do for me". Ithink many of them actually thought I had a mental problem. I finally found one doctor whoagreed to put me on oral antifungal medication even though she couldn't see yeast in mywet prep. She said that sometimes people were allergic to the yeast and/or yeastby-products and that she had seen people with obvious yeast infection symptoms, but noevidence on the wet prep. Well, after trying Diflucan with minimal results, we triedLamisil. It started working within a few months and I ended up taking it for a couple ofyears (with constant liver tests and no liver damage). I also went off my birth controlpills which I had been taking for years and now use an IUD. Additionally I tried the"Yeast Connection" caveman diet and still to this day try to limit my intake ofcarbs. I have been yeast free and *almost* pain free for about five years. When I firstwas cured of yeast we had trouble levelling my vaginal PH and I would bounce back andforth between yeast and bacterial infections. Finally we got it under control and now Ioccasionally have a flare-up and have to use Nizora (antifungal) or Cleocin(antibacterial)l medication, and I won't take oral antifungals unless I absolutely have to(I took them a lot as a child). I am a firm believer that the combination of diet (lesscarbs to feed the yeast), the antifungal (lamisil is strong and kills different kinds ofyeast), and going off the birth control pills helped. I also stopped using any types ofsoaps or detergents with perfumes. I hope my writing this will help someone else in the same situation. My heart goes outto you because I know how much you are suffering. My marriage has lasted through this andI believe it is stronger because of it - but I certainly can't say it was easy. God bless.
CommentHi.. To the person who posted about the boric acid treatment, this treatment is in afew steps. I am including the entire regimen so that if you want to try it, you can followwhat she did for me. This is what she has prescribed for me. The treatment is in 2 steps:First: Cleocin HCL 300 MG 1 capsule 2x day for 2 weeks Plus Diflucan 100 MG 1x day for 2weeks (the Cleocin is an antibiotic...to make sure there are no "bad bacteria"in your vagina that may not be detected by a normal test, but are lingering around andcausing problems, and the diflucan you need to take with the Cleocin so that you don't geta yeast infection) Take 1 Cleocin and 1 Diflucan in the AM, and then 1 Cleocin at night. Second: After you finish the 2 weeks of this, the next step is to use Boric AcidVaginal Capsules (which you insert) . The prescription she gave me for these is asfollows: Boric Acid Vaginal Capsules 600 mgs QOD x 30 days Take them 1 capsule every otherday before bedtime for 30 days.You may have to call a few different drug stores to getthese; some drug stores will not have them- be persistent! I am on the last week of theboric acid, and this treatment has worked wonders. After these 2 treatments, you may ormay not need estrogen cream. They can test your estrogen levels. As I said before, I wouldrecommend anyone who has been diagnosed with vestibulitis or vulvodynia to try it. You mayhave something lingering in your vagina that does NOT show up under a microscope. ToFrank...has your wife had her estrogen levels tested yet? Just wondered. Good luck toeveryone, and keep trying!
CommentI have been working with the Vulvar Pain Foundation (see links) for 4 years now andhave been working directly with Dr. Solomons over the last year. I had much success withthe low-oxalate diet, calcium citrate, NAG, L-Arganine and Ox-Absorb (avail. through theVitaline Corp. and L&M vitamins). This last month I completed an intensive treatmentwith Dr. Solomons newest discovery HTO and am pleased to say my pain is gone. I stillmaintain all the above-mentioned precautions as well as physical precautions ie looseclothes, no irritants/perfumed soaps etc... I cannot recommend enough the work of the VPF. They can be reached through the link onthis site. Good luck!
CommentI think I' ll have this pain forever and I don´t know what to do. I' ll be mad soon.thank your information.
CommentTO THE PERSON REQUESTING AN MD WHO IS AWARE OF VV IN ATLANTA- LISA PEACOCK MD
CommentTo Becky: You asked if my wife had her Estrogen levels checked. well about two weeksago she went in for a pap test and at my request asked if her Estrogen could be checked.The Gyn hestitated at first then obliged her. She got the results the next morning thateverything was normal. I think that was really fast and question the results. I asked mywife to call the office and get a copy of the test so that we could make a comparissionwith future blood work. She had her gallbladder removed last week and is on the mend but Iknow she just will not make that call. My wife is a smart, hardworking, wonderful wife andmom but she is just not into pursuing this matter. The more I push for her to be involvedthe more she backs away. You would have to understand her upbringing to know what makesher tick. I will continue to check the site and make occasional suggestions but for thesake of peace in our marriage I cannot be too pushy. Thanks for the concern and my best toyou all.
CommentPara Patricia Ramos. Como verás soy española.Desgraciadamente no se inglés. Te heescrito un e-mail.Yo también sufro vulvodinia desde hace ocho años. He aprendido muchoen esta guestbook.Gracias a todas.Les deseo mucha salud.
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CommentPara Patricia Ramos. Como verás no se hablar inglés, pero al igual que todas tambiénsufro de vulvodinia. Te he enviado un e-mail. He aprendido mucho leyendo esta guestbook.Gracias y salud para todas
CommentIt's great to read that people are finding real success in the USA with various regimesand drugs but I don't think half the things I have read about on this site exist on theUK, which is very frustrating - I can't even get empty capsules to make the boric acidtreatment up. If anyone knows of any really good drugs we could ask for over here I wouldbe very grateful. I am very interested to read about the possible yeast connection, butagain I don't think we can get daily Diflucan. I may be wrong. Any advice would be mostwelcome.
CommentHello Everyone, I have been reading all your entries for the past few weeks and am heartbroken andscared, yet encouraged to see so many others suffering from this condition. I have hadvulvodynia and VV for 2.5 years now and have tried most everything from accupuncture,biofeedback and manual physical therapy, exclusion diet, imipramine and estrace. I hadsurgery november of 99 which was about 65% effective. I am no longer in the relationshipthat I was in before I was diagnosed and somewhat believe my devestation from having thiscontributed to the destruction of the relationship, and part of me believes and fears thelack of success of my surgery contributed to his ending the relationship. I have sincemoved and am seeing a new doctor in Milwaukee, WI who says I have the skin conditionLichens Planus which was never mentioned by the two "specialists" I saw inChicago. I hope so much that her therapy will put an end to this suffering as I can'timagine living with this and strongly fear never finding someone who will love me withthis and accept me. I am only 28 and want desperately to marry and have a normalrelationship. My question is to anyone who is single..how do you deal with having this anddating? Do you feel obligated to tell the person and at what point in the relationship? Ifeel like if I wait too long they will feel I "trapped" them into something. Iknow now I have a false sense of security not being sexually active but am scared thatwhen/if it happens again i will once again be sucked back into the depression of having tolive with this and feeling inadequate as a partner. Does anyone else have these feelings?HOw do you deal with them? I just want this to go away and be normal again. thanks forlistening. Lauran
CommentLauran, a lot of us understand how you feel. This seems to be a constant battle. I wasmarried only for 3 months before I started to have vulvodynia. At first my husband seemedto be very encouraging and understanding. He went to every doctor's appointment I had,helped me put the creams on and was just very helpful. Then came reality that I seemed tonot be getting better. It was very hard for him @ first, but now he "seems" tobe okay. Every time I ask him does he want to leave, he says no. He has always told methat he is here for the long haul. I am so happy that I found someone like him. You willbe able to find that special someone who is able to "deal" with this. Just beopen and honest. Take one day @ a time and just believe that it will get better.
CommentTO JANE S., who posted on 3/19 I've never been to the UK, so I don't know this: is boric acid itself available overthere? If so, and your doctor wants you on this regimen, ask him or her to write you aprescription for the boric acid inserts. A pharmacist should have access to the capsulesso that he/she can make them up for you. Or, you could buy the capsules through the mail: I've found a site for you that sellsthem: http://www.herbsnmore.com/gelatincapsules.html There's probably many more places over the Internet where you can find them. I just dida search for "gelatin capsules." Hope this helps! Deborah
CommentTo Lauran: Stephanie gave you some good advice. Not all men are looking for the "Perfect Woman ", there really isn't such a person. We are all different and physicaland psychological limitations make us unique. There are men who would love to be with akind ,caring ,interesting lady . Develop other likes and interests that make you a happyperson. We are conditioned to have sex on the brain and it is a driving force but thereare other things in life. Be patient, be good to yourself and be honest. Best of luck.
CommentHi ALL, I have not visited this web site for at least a year or more now. I probably firstposted in the 7th or 8th guestbook back then. I was also a part of the E-mail group, but,had to unsubscribe as I was getting way too much mail to deal with as I belong to anotherwebsite too, and, between both - I was getting 100's of messages daily! Anyway, I have hadeither, Pudendal Neuralgia or Vulvodynia since 1993. I am 35 years old now, and, aftermany doctor's one Specialist diagnosed me w/ the Pudendal Neuralgia, and, tried everythingto help me for several years - lastly I did home injections of Alpha-inerferon, which mademe very sick, and, did not help at all! I then went to another Specilist at Johns Hopkinsin Baltimore, MD., and, he informed me that I did NOT have Pudendal Neuralgia, but, it wasin fact - Vulvodynia. He prescribed a combination of creams for me, but only one helped,and, it was a steroid cream called Beta-Val. Unfortunately, I had to stop taking it as Iwas told my skin in the vulva area is way too thin - part of the problem - and steroidcreams will just cause it to become even thinner. I was using it daily - 2 x, and thentestosterone w/ lanolin base 2 x weekly, and, I think a estrogen cream 2 x weekly. Theydidn't help at all. I stopped the steroid that did help due to thinning of the skin. I wasnot happy w/ the doctor I was seeing there - terrible bed-side manner, and while I am verymuch overweight by 100 lbs, all he harped about was my needing to lose weight, but nooffer of any help in that area. I have gone with no Gyn. at all for about 2 years. Myproblem is very much still with me, and, I am wondering if anyone here including Dr.Glaser, if you read this, knows of any good doctor's in the Northern VA., Washington DC,MD. area.? I have seen Dr. Fred Mecklenburg at Fairfax Hospital, and, Dr. Kamal Hamod atJohns Hopkins in Baltimore, MD. Neither was able to help me. I have many other medicalproblems at this time, and, am "Disability" due to them. I also haveFibromyalgia. Don't know if it is related to the Vulvodynia or from the trauma of a caraccident in 1997? I also have Chronic Fatigue Syndrome, arthritis,herniated disc's in backand neck, Hypogonadism - no period unless I take the pill or another type of estrogenreplacement. I am also diagnosed with Clinical Depression. Since I posted in the 7th&/or 8th guest books, and had left this web site, my wonderful, beloved, understandingand supportive husband passed away last August of yr.2000. I can't even begin to tell youall how this has devestated me! It was very sudden - he had heart disease. We knewsomething was wrong, but, he wouldn't go to a doctor. He was only 38 yrs. old. Withouthim, I am so lost and lonely! I don't want anyone else at this point in my life, but,if Iever did want to meet and become involved with anyone else - I feel my chances are"ZERO"!! Who in their right mind would want to be with someone like me with allthese problems? Unlike my hubby whom I was already married to when all this started. Hewas so good to me! I'm sorry this is so long. I didn't intend it to be, but, I am truly, desperately inneed of a new doctor. I have a GP doc that gives me my pain killers for Vulvodynia,Fibromyalgia, arhritis & disc problems along with anti-depressant and several othertype meds I need. I wish all the best to all of you who are suffering with this terribleproblem. I have a whole lot of different things to share in ref. to things that could helpthat I've tried, but,I won't go on anymore in this post. If anyone is intersted, pleasefeel free to Email me. And - if anyone knows of a decent doctor in my area - please let meknow! Thanks so much!! By the way - I live in Dale City, VA. God Bless you ALL, Love,Janet
CommentTo Janet: My deepest condolences for the lose of your husband. You certainly aredealing with many difficult issues. I have posted on this site many times but I don'tthink I ever mentioned a car accident that left me with herniated discs. While I cannotcompare to your other pain I know the constant headaches and neck pain I endure. I havegained more than thirty pounds because of it and although I am not very overweight Iunderstand how the excess weight makes the injury more painful. Doctors can't understandthe pain unless they have suffered the injury so they push pain killers and tell you toloose weight. My only advise and I hope you are not offended is that you prioritize acourse of action. Make up a list of how to best get your life back while dealing with allthese health and personal problems. Maybe weight lose would lessen some of the pain ?Consider a course to accomplish that , maybe diet is not the answer. There are otheralternatives. You must be overwhelmed and starting anything at this point will bedifficult, so get a game plan. I will pray for you.Best of luck
CommentHi Lauran, I have had vulvodynia for 10 years now but only recently got the diagnosis so for 9 anda half of these years I thought I was the only person on the planet with this strangecondition, but I couldn't really believe it. I have had a 5 year long relationship whichended a few years ago, probably partly because of the vulvodynia (although at the time Ididn't know what it was called). I went for a while where I felt like you do and I wasalmost actually happy to be alone as I felt safe somehow. Then, 2 years ago, I met myhusband and I knew he was the right one. I told him right from the start and right away hewas understanding and supportive. He still is great and wherever we are, whatever we do,if I mention that I'm in pain and would rather go home to take my irritating clothes off,he's great and says all he really wants is to be with me, wherever he is!!! All this totell you these great men exist! If anyone runs away after you tell them about thevulvodynia and the pain, they weren't worth it. Don't sell yourself short because ofvulvodynia. It's only a fragment of who you are, but there is so much more. Good luck, Dominique
CommentLately I have not been keeping up with this site. I diagnoised myself from reading thissite about 2.5 years ago. After a pap test that showed some abnormal cells the gyn I wasseeing at the time (mine had retired) gave me antibodtics. Of course the infection clearedand my nest pap test was clear. In the mean time I developed vulvadynia. For the first sixto eight months I was treated for everything under the sun. My gyn told me that the painwas in my head, because nothing showed up in tests that were taken. I finally got toanother Dr. that sent me to University of Michigan to see Dr. Haefner. She and her staffwere the first ones to say that this is a real diease and not in my head. I take Elaviland hormone replacement and I do feel much better. I have developed other nerve painproblems in the last two years and I think that they are related. I now have pain in mylower back (no injury) and doen my legs to my feet. I also have to take 50 mg. of Vioxxfor pain in my joints. I believe that these things are all related and that vulvadynia isone the related dieases that is part of something much bigger going on. I also believethat if there is no injury or skin diease that it is a neruo problem, meaning that themessages that are being sent up the spinal column are not be read correctly by the paincenter in the brain. Of course I amnot a doctor, but I have been reading and trying tohelp myself with this diease. The doctors at U of M are wonderful and are working to finda cure or at least a way to deal with this problem. I know it hard to remain hopeful, butI urge you to keep seeking help and to reply on a higher source for comfort. I find prayeris very comforting to me. Terry
CommentTO TERRY: Well, reading your message has led me to even MORE questions! I have had vulvodyniasince 1994 (at 28 years old). Actually, that was when my problems started: spent a yearand a half trying to get a diagnosis, and FINALLY (after many, many doctors visits anduseless medications) was diagnosed with an ATYPICAL yeast infection. I have had thebladder irritation, low back pain, etc. The pains come and go, with no apparent pattern tostress in my life, what I've eaten, etc. I just can't figure it out, but not for lack oftrying! But, within the past few months, I have developed the same thing you're talkingabout: a low back pain (different from what I've been used to getting) and nerve painsdown my legs (ESPECIALLY behind one of my knees). I'm also getting nerve pain down my arms(elbows especially). And, I'm getting tingling in my feet, hands, and face. I just don'thave a clue as to what THIS is all about, but I have so many symptoms now, it's hard toknow what's related and what's not. If you don't mind me asking, what other symptoms do you have? I'd like to see if theyare the same as mine. I'm wondering if I'm now going into fibromyalgia (since tingling andnumbness can be a symptom of this). (DR. GLAZER: What do YOU think? Any experience with THESE types of symptoms?) Thank you for your help! Deborah
CommentWell I am again going to ask if anyone has ever used Dr. Glazer's biofeedback? I amgoing to try it I just wanted to hear from just one person that it has helped. I guess ifit helped you may not be posting here anymore. But, I can hope that this will be seen bysomeone and I will get a comment. Thank you Lyn j
CommentHi...I've posted here quite a few times in the last year or so; but not with very muchinformation in this current guestbook. I just want to briefly reiterate some informationthat has helped me tremendously and if anyone is interested further they are (obviously)welcome to read my past posts on 3/28/00, 3/29, 4/1 (Mary's not mine...but veryinformative), 4/13/00 - in the 11 th guestbook...6/27/00 (13thguestbook)....10/9/00(14th)...and 1/15/01, 1/18/01, 1/29/01 all in the 15th guestbook. Inthe first couple of posts I told 'my story' so I won't 'bore' you with all that again...Insummary after having suffered for over 5 years with many topicals, antibiotics,you-name-it, I-did-it...like many of you...I was FINALLY steered in the right direction;which may be the right direction for some of you? I don't know...I'm just trying to help.So many women have complained of back, leg, etc...and wonder if there is a link somehowbetween their vulvar pain and maybe an underlying case of nerve damage somewhere. I hurtmy hip 5 months before suffering from a (was it really?) a yeast infection and from thatpoint on (7 years ago) I have had vulvar burning and / or itching. It took ME over 5 yearsto figure out the CONNECTION between hurting my hip and all this **** I have sufferedthrough. I have since been seeing a PT who confirmed at the time that my hip was 'rotated'and in turn my lower back had 'loss of mobility'...and this - with all the muscles andnerves that are being affected in that same area - is where my pain is coming from. Sheperforms myofascial release...Now for my chiropractor: The main reason for this post. Heperforms Active Release Technique..He diagnosed that my genitofemoral nerve is entrappedin a mass of adhesions (in my hip area down toward my lower abdomen toward my pubicbone...to give you an idea of where this is...) His 'job' by doing ART in this area is toliterally 'release' the nerve by working through all the adhesions that have formed overthe years. This is all mentioned and discussed in detail in my listed postsabove...('Mary' first mentioned ART in her post and upon seeing a possible connection andsimilarity with her story and mine; that's what made me decide to persue it. So, here Iam...I am not pain free all of the time. BUT I am pain free for several days and/or weeksat a time...When it does flare up, my head (thus far) has been so tortured by this-I veryeasily go into 'depressed mode'...but when it's gone for lengths of a time at a time - itis wonderful. (When it does 'kick in' it is not for as long as it used to be and not assevere...)It is working. I am optimistic (now, because I don't hurt)...and I try to bewhen I do hurt...The best thing is that my chiro. is ALWAYS optomistic...he believes thathe will make this 'go away' or at least when it does flare up it will be controlled. Ihave gone on and on...I just hope this info. can help someone like it helped me. By theway, my chiro had never treated anyone with vulvar pain so yes, it was awkward to say theleast, to approach a complete stranger with my story (But after what I had already beenthrough...Who really cares?) He is a caring person and believed from the very beginningthat he could help. Take care.
CommentAfter all that...I neglected to 'state' my point. If you feel as though you have'nothing to lose', why not go and see a PT and/or chiro. to get your structure/alignmentchecked out? From what I understand, we could have 'hurt' ourselves in the past and noteven have thought anything about it...and if hurt enough internally...one thing leads toanother. The other thing is that I, too, was very focused and/or 'caught up' (for the lackof a better word) in the whole 'bacterial thing'...I was being 'treated' and 'treated' forbacteria and/or yeast after bacteria and/or yeast (Then with all the crap I was takingand/or putting down there, who knows how much more I added to the aggravated skin??? Andfor what appears now to be for nothing)....I know you all already know this: (after whatwe've been through): but we do all have to have a normal amount of bacteria and/or yeastto contribute to 'normal flora'...In my case, before I ended up at my current 'specialist'(GYN), I was being treated unnecessarily for all this supposed yeast and/ or bacteria.Excuse my repetiveness (I've said this in more than one post before ) ..that isn't it'funny' how since I've been seeing my specialist for the past 2 years (almost), that Ihaven't been on one antibiotic?- and NOTHING goes on me topically down there? It was hardfor me to get past this "I know I have (another) infection thing..." when Iwould continue to have burning (and redness too.) But it wasn't and hasn't been true. Idon't mean to 'preach' in ANY way or form...That's not how I mean to come across. I,myself, am just SO sick of this...and am so 'fortunate' to hopefully be on the right trackwith this (at least for me and some others anyways); so, if I can help anyone in any way -bymaybe in putting 'a bug in someone's ear' as Mary did for me I will feel good! Thank youfor listening.
CommentI hesitantly, but with some hope, write this entry. I have suffered with vulvadynia foralmost 4 years. My pain is burning in the labia and sometimes internally. My pain alsomoves from place to place in the vulvar area. I understand this is normal for this type ofdisorder. I have no infections, itching or anything that resembles anything abnormal inthe vulvar area other than burningl. After four years, I have found some relief. It has evolved slowly and I still haveburning from time to time, but I feel like I have a life again!! This is my regimen: I follow the low oxalate diet, take 1 caltrate,1glucosamine,1effexor 37.5 mg''s 2x daily, use the combipatch and 0.5 estradiol by mouthdaily. I also use lorazepam as needed. The thing that has made the biggest difference isthe hormones as far as fast results. I have been on the combipatch for over 1 year with little relief, but once I added the0.5 mgs of estradiol by mouth, I experienced a real improvement. I believe that all of mymeds and supplements have helped, also I can't stray too far from the low oxalate diet,but I am better. I pray that this will help someone out there that is searching for answers. In my case,I know that the diet has a lot to do with my burning sensations. On really bad days, (if Ihave had too many high oxalate foods), I take 1/4 tsp of baking soda in a tall glass ofwater. It neutralizes the acids and helps. I will check the guestbook daily to see if anyone has any questions etc... God bless all of us and keep praying.
CommentOops! I made a mistake in my regimen. I take 1 Citrical not Caltrate... Sorry!
CommentHelp! I WAS DIAGNOSED WITH VULVADYNIA 18 MONTH AGO AND HAVE BEEN SUCCESFULLY TREATEDWITH 25 MG TOFRANIL AT BED TIME SINCE 2NIGHTS AGO.ALL THE PAIN AND BURNING IS BACK .PLEASEGIVE ME SOME ADVICE. IAM TOO SCARED TOGO BACK TO DOC TO HERE THE CONDITION IS GETTINGWORSE AND NOTHING CAN BE DONE. I RATHER DIE .IF YOU KNOW ANY DOC IN LA PLEASE LET ME KNOW.
CommentTO DEBBIE (WHO POSTED ABOUT HER SYMPTOMS FLARING UP AGAIN): I, too, have vulvodynia, and I, too, have times when I don't feel too bad, and timeswhen the pains really flare up. But, you really SHOULD go to your doctor, just to be sureyou haven't gone into a yeast infection or something like that. I understand that you are scared. I know that when I have my flare ups (and I'm havingone RIGHT NOW), I kind of freak a bit, but I try to remind myself that stress and worrywill only make things worse. WORRY is NOT good for ANYONE! I know that sometimes this iseasier said than done, BELIEVE ME! But, if there's one thing that I've learned from thisexperience, it's how connected things in your body are: I mean, things that you wouldn'tthink had ANYTHING to do with something else in your body sometimes DO! Get yourself checked out. You'll be in for better days again. Just hang in there.
CommentTo Lauran, Responding to your questions about dating...let me first say I've had vulvarvestibulitis for probably 15 years and at 34 have been happily married for over 6 years.In my opinion, you're under no obligation to disclose something this personal until you'repretty sure the man has solid potential as a "keeper." Frankly, I wish I hadwaited until I was married to have sex at all, because in retrospect, everything prior wassuperficial and childish in comparisin. That said, were I you, I would handle any dateswho want sex early on by informing them you want to build a relationship first...no needto explain anything about your condition...and then after you know him well and have abetter level of trust and understanding you could fill in the blanks. PLEASE don't worryabout someone feeling like you "trapped" him; a man who really loves you willlove more than just your ability to have intercourse with him. You shouldn't even considermarrying someone whose attitude is like that...that attitude would probably have anegative impact on other parts of the relationship, anyway. However, I do think thatbefore you accept an engagement, you need to inform your potential husband about yourcondition; it's only fair for him to know what to expect...after all, it will be hismarriage, too. If you take the time to build a relationship and use your best judgement inpicking a husband, it is ENTIRELY possible to get through this. I'd be lying to you if Isaid you'll never feel somewhat depressed and inadequate, but those bouts shouldn'tdominate your life...there's so much more! God has a purpose for each of our lives...andlooking for that purpose rather than getting hung up on how we're inadequate makes dealingwith this a whole lot easier (each of us falls short of ideal in some way anyway, right?)Best wishes and God Bless you.
CommentWhat a surprise this guestbook is! I had no idea there are so many other women withsimilar problems...I have recently been diagnosed with vulvar vestibulitis after roughly15 years of treatments for yeast, Beta-strep, etc. etc. etc. After years of friends'puzzled expressions when I describe the symptoms and my husband's exceptional tolerance ofthis condition, I am both excited and saddened to discover that there are others dealingwith the same challenges and frustrations. Here is a recommendation for anyone in theWASHINGTON, DC AREA: Dr. Stanley Marinoff at Three Washington Circle (just across from GWUHospital). He is director of the Center for Vulvovaginal Disorders and is involved witththe the NVA (see link to their web site). Best of luck and God bless you all who arestruggling with this problem.
CommentTo Debra, Dominique, Frank and Stephanie, Thanks so much for your responses to my question and words of encouragement. I hope Ican find a partner as loving and accepting as yours. I really appreciate your responseDebra, I think it makes good sense and is the approach I plan on taking. It helps me tohear that others out there are dealing with this in their marriage without it having adetrimental effect. thanks again! Lauran
CommentI have only heard from one person regarding the success of the biofeed back. Pleasecontact me through my email address. I am really interested in any comments. Please. Lyn j
CommentHi, this message is for Debbi that posted on 3/23. I'm sorry that the medication youhave taken has lost its effects. I had vulvodynia once before, but I've never taken anymedications for it. I only put vanicream on mu vulva every night. It has no steroids, noirritants in it. It's a moisturizing cream for irritated skin. I will suggest you go trythat. I've been vulvodynia free for over 6 months now. If you're having flare ups, thatmeans you have vestibulitis. I can't offer much advice on that. I had vestibulits, but Ihad surgery 7 weeks ago and I feel a lot better. Good luck to you.
CommentTo Jane S -Jane; yes boric acid is available from chemists in the UK (try the smallindependent ones ones not Boots though!) I couldn't get gelatin capsules either, but aswell as the site Deborah suggested, there is one in the UK - www.baldwins.co.uk who dopacks of a hundred for a few pounds which I am using at the mo. I do think the yeastconnection thing is a huge possibility for some of us, if not all - my vulvodynia startedwith severe thrush and a few weeks into having the (undiagniosed by my doc) thrush I gotthe most awful rash on the inside of my legs. It only comes back now if I shave my bikiniline which makes me wonder if there is yeast lurking the area which only displays itselfwhen the area is vulnerable after shaving? The other thing I have been using and is themost soothing cream I have ever found is Bach's Rescue Remedy Cream (from Boots or mosthealth shops). We can't get the Vanicream Lynn from the US often recommends, so I reallywould suggest trying this - it's brilliant! I have seen a real improvement in symptoms inthe last few weeks and I am sure a lot of this is down to the cream. I am also trying theboric acid treatment now as I feel it may work for me. The other things which reduced thepain considerably for me is capsaicin cream - if you can get past the burning you get forthe first week or so, I would really recommend it. I have had vulvodynia for two years butin the last month I have really started to think there is light at the end of the tunneland I think the capsaicin (a natural one from the States not the one my doc gave me whichdidn't agree with my skin!) and the Bach cream have been a lot to do with it. I did tryamytriptiline and sertraline for a while so you could ask your doc for them - they do helpa lot of people. To all the women who are suffering and contribute to this site - thanksfor sharing your stories and your suggestions for what helps. And to the men who postoften too - thanks for being so supportive to your partners. I developed vulvodynia justtwo months after meeting the guy I am now married to and so for nearly all our timetogether he has had to live through this with me - and has been, and still is, wonderfullytender and supportive with me, especially at those times when it all gets too much. We'dbarely got to know each other intimately before the vulvodynia started. To the ladies whowonder about finding a chap while you have vulvodynia - if they have a problem with yourpain, then they're the problem! As this site shows, there are many men who areunderstanding of the anguish of vulvodynia. If a new or potential partner can't or won'tunderstand your pain, then they're probably not the sort of guy you'd want to get to knowany better anyway.
CommentI wanted to tell about a treatment that has helped me recently. i have hadvulvodynia/vetibulitis for six years now and i have tried everything, even surgery. Mydoctor prescribed me EMLA cream, which is a numbing cream. i rub it on the areas that hurtabout a half hour before sex and it really makes sex less painful (it numbs the areas). idon't know much about the long term effects of using the cream routinely, but it reallyhelps me to be able to have sex. When I don't use the cream, sex is very painful. When ihave really bad days, i will use it also and it helps decrease the pain so that i canfunction. I hope this information helps someone.
CommentHello ladies, like many of you my wife has used anti-biotics and developed yeastinfections as a side effect. I know some of you feel there is a connection to Vulvodyniaand maybe you are right . I just remembered that a few months after stopping birth controlpills my wife was given Prednesone for a bad skin rash. Have any of you used this drug?,is there a connection? I know it's a long shot but the experts aren't coming up with anyanswers. There has got to be some common cause. Thankyou.
CommentLynn or anyone else that can answer, Does vanicream have to be prescribed by a doctoror is it over the counter? Thanks!!!
CommentHello to all, I'm writing in to give what is hopefully a success story. I have writtenin here a couple of times. First it was to say that I'm a 24 yr. old suffering like a lotof you are, and then it was to say I found a Dr. in Milwaulkee who said she could help me.I was diagnosed with lichen slcerois of the vulva and I had horribly swollen glands. Isuffered four years going through treatments that did absolutely nothing for me. To make along story short, after seeing her for a while we realized that just medication would notwork. I agreed to have a surgery where she would remove the skin that the skin diseasedestroyed, replace some of the lower skin with a skin graft, and remove the glands.Everyone has a different amount, I had 12. I went into this with some apprehension, mustalso a lot of faith because I knew that I was running out of options. I went under thesurgery on 12/27/00. I won't lie it was an extensive surgery with a long healing process.Some of the glands she removed were 3 inches long! My skin graph took, and I was on tohealing. I'm now at my 3 mo. mark. My skin is almost completely healed. I no longer havebulging glands. I used to be able to feel them through my clothing. I can honestly saythat I think I'll will be close to be 100% pain free. I can be examined without writhingin pain. I'm just finishing dialator therapy because my muscles contracted after thesurgery. I only have 2 more wks. to go and then I can attempt intimacy. I'm planning tomarry this year, and I can not think of any greater gift. My therapy does not just endwith the surgery, now that I'm aware of the lichen sclerosis I know when I might have aflare up and I can treat it. I'm aware that what helped me might not help the next person.But, I wanted to put it out there that I did find releif. It took a lot of time, energy,and money, but I found a empathetic, educated, female doctor who told me she would be thelight at the end of my tunnel, and she was.
CommentI am 27 and believe I have been suffering from vestibulitis for the past 6 years. Itbegan as it seems to so often with a bout of thrush. Months later I visited a doctor to betold I had a 'skin crack'. Things got worse but mostly doctors have said they cannot seeanything. I am very fortunate to have a supportive boyfriend for the past 5 1/2 years,unfortunately we haven't had intercourse for about three years. But we do manage some sortof sex life! My problems also began a few months after I started taking the pill, dianette, which Istill take because I have fairly bad skin in the form of mild acne. I stopped taking thepill for 6 months about 5 years ago when the pain wasn't so bad, but it didn't help then.Is there anyone who has stopped and has noticed a real difference? I also had problems with my bladder for a couple of years. About 1 year into thevestibulitis. I had bouts of cystitis every few weeks, and thought it was back again,although there was no pain upon urinating. I just had a constant full feeling in mybladder. After various negative tests I stopped drinking caffeine, and I don't know whether itwas coincidence but it began to get better, and eventually over a couple of yearsdisappeared. The problem was always worse later in the day and getting to sleep feelingyou urgently needed the loo was a nightmare. In some ways it was worse than thevetibulitis because it was always there. I don't suffer constant pain, but I can feel that its not good down there! Some times Iget what can only be described as a prickliness around the vagina in general. I used tohave problems wearing certain trousers, but this doesn't seem too bad now. Some years agoas a student I did have to stop riding a bike because that got very uncomfortable! I'd be intersted to hear from anyone with similar symptoms as this problem seems to beso varied. And if anyone in the UK knows of a good doctor in the South/West particularlyBath/Bristol I would love to hear from you. I'd like to try Calcium Citrate, but I understand that you should have medicalassistance to check levels etc. Thanks to Kate for her suggestion of Bachs Rescue cream, I'll be off to buy some thisweekend! Anne.
CommentJust want to support women who feel desperate and feel that they cannot go on. You seethat is how I felt. I had faced a few years of drastic changes to my vulva/vagina. I wasexperiencing rawness, soreness, severe itching, paper type cuts, copious discharging,swelling and re-opening of my >20 year old episiotomy scar. This was a continuoushappening. I had up until 1997 had a very sexual relationship with no complaints. I do notknow the cause of my problem only that in 1997 I had some cervix removed by loop and whenI went back for a check up some six weeks later I was experiencing pain not on my cervixbyt rather in my vagina. The Onocologist/Gyn could find nothing obvious that would becausing a problem at the check up time. Things got much worse I was given medication whichwas as it turned out inappropriate, I was placed on estrogen, which created furtherproblems with my body. It was a saga. I saw a few doctors including a couple of Gyns andwas deteriorating. Then in early 2000 a Gyn said he did not believe he could help me, thatI was too raw, bleeding and swollen to examine me but referred me to a Gyn who he believedhad extensive experience in vulva conditions. In the meantime I found this fabulous siteand must say that I had every symptom that women were saying was vulvodynia. I felt atlast I had a real condition but needed a skilled knowledgeable Gyn to make a diagnosis. Ivisited the Gyn who was recommended and he diagnosed me with Lichen Planus andDesquammative Inflammatory Vaginitis and Streptococci B. I was treated with Clindomycin 2%on two separaate occasions and it certainly helped the rawness soreness itchingenormously. But he was dissatisfied that the Strep B remained and suggested that I followthrough with my treatment for my immune system (I had been diagnosed with a couple ofconditions). On my second last visit to my Gyn he did a pap smear very gently using a verysmall speculum and again it reopening the episiotomy scar. I decided to follow up oncorrecting my immune in the hope that I would heal my vulva also and found a doctor whohas a fine reputation who has placed me on many minerals and vitamins. I visited a newPharmacy/ Drugstore not far from where I live and was seeking some kelp tablets which hadbeen recommended when the discussion lead to my finding out the Pharmacist was in fact aqualified Naturopath, Homoepath Acupuncturist. I started having acupuncture to give myimmune system a boost and in talking I explained how I still had the deterioarting vulvacondition and how I and could only have broken sleep because of my itching burningproblem. He asked me if I would like him to make me us some special cream for my vulva. Itis his secret recipe and in just two weeks I cannot believe the healing that has takenplace. For the first time in years I am actually free of burning itching soreness rawnessswelling cuts, tears etc. I had been unable to use any cream as they always felt as ifthey were burning my vulva/vagina. I use a cream to wash my vulva etc and then use the"miracle" cream inside my vagina and around the vulva as often as I like. I nolonger have soreness of any kind. I still have a small amount of discharge which we areworking on at the present time. I was so thrilled for me that I asked him could he supplyother women - his comment was certainly but firstly he has to know what pills lotions andcreams the woman has been using for the condition before he can go ahead and make up aspecific one for the individual woman. He feels that face to face for the first discussionis important to ascertain each individuals situation. I am very fortunate - he forumulatedsomething and it worked. I now sleep undisturbed. I no longer get in and out the showermany times day and night to run water on my vulva just to give relief and wash away someof the discharge. I no longer have to wear cotton (home made) pads in my briefs. I am alsolooking forward to resuming sex in my loving relationship/marriage of nearly 24 years. Idid not choose this life of celibacy it was forced on me by this hideous condiiton. So themessage I want to get out to you all is keep on keeping on - change doctors seek otherpeople working in the health field they too may be able to help you.
CommentCan someone, anyone give me some advice? I have vulvodynial. But I do have it undercontrol. What the problem is is that I cannot use any deodorants soaps at all! OtherwiseI'll start to hurt again. I' m starting to smell funky and smelly. I go to work everyday,smelling and I know the others can smell me. I put on perfume to try to cover up the smellbut it only makes the smell worse. I live out here in California where it's always HOT andI just don't know what to do. I try to go to the bathroom 3 times a day to get cleaned butthat doesn't help any. The only thing that helps is a nice shower or a soak in the tubwith just plain water. Does anyone have any advice? I like this guy and I know he likes meto. But I can't get too close to him at work because I smell bad. Please help!
CommentHi. these messages are for Elizebeth and Stephanie. Elizebeth, I want to know howeffective was your surgery? Stephanie, it's very hard to find someone who actually sellsvanicream. But it is not by prescription, however it is sold behind the pharmacy counter.I know you can purchase it from Targets or from Walmart. I use the vanisoap to. That'sgood as well. Good luck
CommentI just read about the miracle cream that was made for Kellish. Secret recipe that curetears, burning and itching. Sounds too good to be true. I don't mind paying for somethingthat works and I don't have to know the exact formula but I would not recommend usingsomething without knowing the ingredients. Allergic reaction would be just one concern.I'll accept a secret recipe on fried chicken but not on a cream used on my wife's vulva.Continued success with this treatment.
CommentTo the woman in Ca., have you tried bathing in baking soda or Aveeno oatmeal bath? Ithelps prevent odors. What about Aveeno soap?
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CommentWhat area is your doctor in that made up this miracle cream, and also do you know whatis in it? Thanks!
CommentSorry, that previous entry was intended for Kellish.
CommentNo I haven't tried Aveeno soaks nor the soap. But I'll try it tonight. Thanks a lot!Anyone else have any suggestions!
CommentI am new to the guestbook and my husband and I specifically bought a new computer sothat I could get support and help from other vestibulitis sufferers. I am 26 years old andI have been married for almost 4 years. The first 2 years of marriage were spent indenial. I was a virgin I and blamed the pain on "tightness". I felt embarrassedand ashamed because I couldn't be a "complete" wife. I was told by severaldoctors that having a baby would cure my problem. At the time, having a baby was not anoption. I finally confessed my situation to a friend a year ago and saw an OB/GYN whodiagnosed me with vestibulitis. He placed me on various antibiotics, creams and stretchingexercises, none of which offered me any relief. After putting me off for several months,he referred me to another doctor who tried another round of creams and then sent me to onesession of biofeedback. I became extremely frustrated and depressed and contacted the NVA.I am scheduled for an appt with Dr. Galask in Iowa City, IA. Has anyone had an appt withhim? I am extremly frustrated and depressed. My husband and I have tried stretchingexercises, vaginal massages, and tons of lube with no improvement. I am also constantlyefflicted with itching, burning, yeast infections and bladder infections, which seem toconsistanly occur at the same time. My husband and I are now very anxious to start afamily and I would like to hear from other women who are diagnosed with vestibulitis whohave been pregnant or who are currently pregant. Did delivery improve or worsen yourcondition? Were you constantly having yeast or bladder infections and if so how were theytreated? Thank you for any information that you can give to me. I greatly appreciate it!You are all in my prayers.
CommentTo the girl in california: I recently started using Uncle Tom's all natural soap toclean myself..I would try to get that; I think natural food stores carry his line, he hasmany different products. You could also try Basis soap which is sold in most walgreens,walmart, osco, etc. hope this helps! Lauran
CommentI have been diagnosed with HPV over 4 years ago. Since then i haven't had any symptomsuntil this past year. I also have had an epistiotomy. Once I started acutane, I startedexpeiencing problems such as itching, burning, and pain during penetration. Doctors havegiven me a topical cream and told me that I have some type of thin skin disorder whichcauses the pain and irritation from th friction during sex. I've stopped acutane for ayear now and the pain is still there. I've been to 4 different doctors who have put me onantibiotics b/c of my symptoms. Once they get the results they tell me that nothing waswrong and all tests have come up negative. Sometimes I do experience breakouts but whentested for warts or herpes they come up negative too. I'm tired of being worried aboutpain during sex. Do you have an idea what is wrong?
CommentHello. This is my first entry. After 3 years i have been diagnosed with VV. All thedoctors I went to said they could not see anything and the pain was not found with aq-tip. I just recently went to a 'specialist' in Chicago. He diagnosed me right away andsaid I have SEVERE VV...it is terribly red and inflammed. Why did not others noticethis??? It has been a long emotional journey. My current doctor gave me info on Vular carewhich I am following exactly. He said surgery may be my only option due to the severeredness. I am devestated by the news. I am depressed and supposed to get married in 4months. I never had a normal sex life and not having sex on my wedding day devastates memore. I don't know how all of you stay focused and positive... I go back to the doctoragain in 6 weeks. I am also on a antidepressent and calicum supplement. If he suggestssurgery as my only option I am moving on. Does anyone know of a specialist in theChicagoland area?? Thanks for listening.
CommentTo Erin, I know exactly what you feel I to have had the redness for many years and itis terrible. I to wonder why doctors cannot see this redness upon examination, since icould. Finally after so many years of not knowing what I had I found someone who knew whatI was talking about and found some help. I tested for oxalate and I have peak times. I amon the low oxalate diet and it has helped somewhat, I cannot take citrate so take timedoyster shell calcium instead. I hope the citrate works for you. My Derm has suggestedvanicream like Lynn does so you do have options. It is a slow process but if you go backin these diaries you will find so many helpful suggestions from women that might work foryou. Some women have had surgery and it has helped them a lot. A few years back a Doctorby the name of Linda Holt was interested in vulvodynia in the Chicago area maybe she isstill around I don't know I am not from the area. I wish you the best on whatever youdecide to do. good luck....
CommentHi. This message is for Erin. Erin if your previos doctors could not find the pain bydoing the q-tip test, then maybe you don't have vestibulitis. You probably just havevulvodynia. There is a big difference and many of us sufferers don't understand that. Iwish I could talk to you face to face about your condition. If you do have vulvodynia, Ican only suggest you try the vanicream. If you do have vestibulitis(which I'm not sure ifyou do or not) I would only hope that you are able to deal with it. I had surgery nearly 8weeks ago and I am feeling so much better! Everyday I'm beginning to feel normal again.Well feel free to message me if you like. Take care
CommentLadies check this out. I found this at www.alotek.com/hpv/alotekinfo.htm Vulvarvestibulitis syndrome There is good evidence that vulvar vestibulitis syndrome (VVS) can be caused by HPV.Keep in mind that although only half of these cases appeared to have an HPV association,there are many types of HPV that are not routinely tested, so there are types that couldhave been missed. Therefore, the HPV factor in VVS could be even more significant thansuggested in this study. Am J Obstet Gynecol 1996 Jul;175(1):139-44 Polymerase chain reaction search for viraletiology of vulvar vestibulitis syndrome. Bornstein J, Shapiro S, Rahat M, Goldshmid N,Goldik Z, Abramovici H, Lahat N Department of Obstetrics and Gynecology, Carmel MedicalCenter, Haifa, Israel. "Objective: Our purpose was to assess the prevalence ofinfections by human papillomavirus, herpes simplex virus, and cytomegalovirus among womenwith severe vulvar vestibulitis. Study design: Eighty-six women referred for dyspareuniaand diagnosed as having severe vestibulitis underwent perineoplasty, including surgicalremoval of the sensitive vestibule. Controls included 25 age-matched patients withoutdyspareunia undergoing vaginal operations for various benign causes or undergoing repairof an episiotomy. Polymerase chain reaction analysis was carried out to determine thepresence of viral genes. Results: The prevalence of herpes simplex virus andcytomegalovirus among the subjects tested was nil, whereas human papillomavirus wasdetected in 46 cases (54%). The human papillomavirus present was not of types 6, 11, 16,18, or 33. Only one woman of the 25 asymptomatic controls (4%) had human papillomavirusdeoxyribonucleic acid in the vestibule (p < 0.001). Conclusion: Our data providesupport for the idea that vulvar vestibulitis is associated with human papillomavirusdeoxyribonucleic acid in more than half of cases."
CommentI have to admit, I have been reading this guestbook for a couple of years and havenever submitted anything because I did not have anything positive to add. I have receivedso much useful infomation, I will forever be thankful. I have had vulvodynia for 22 years.Needless to say, I have tried everything possible (except surgery). I have accepted thatthere is no cure as of yet but have based my hopes on symptomatic relief and I havefinally found some. I figured out what caused my vulvodynia (although I realize that eachcase is very different and what works for one may not work for another) and figured outhow to treat it from there. Fifteen different doctors were stumped on how to treat me.Some cared and tried to find an answer and some didn't but it doesn't matter much nowanyway. I had chronic yeast infections that caused my body to develop an immune responseto them. It may be called an allergy or more precisely, a localized hypersensitivity, tothe yeast in my system. It caused swelling and lesions on my vestibule. I usedover-the-counter yeast medications for years. These helped with the itching but thealcohol in them increased my dermititis. I have eczema also. I tried the anti-yeast dietand diflucan but although I would feel better, I would get sick of such a rigid lifestylewithout a complete cure. It still hurt to have sex and that didn't seem O.K. to me. Itactually hurt more after sex than during which caused many doctors to think I didn't havea problem worth treating. I thought differently. This was ruining my marriage and causingme to feel depressed. The depression seemed to get worse every year I didn't find a cure.I started to focus instead on recovery time after sex. If it was 6 months before I couldthink about doing it again, that would be a poor recovery time. If I could consider it in3 or 4 days, that would be a fantasic recovery time. Thanks to a totally natural method oftreatment, I am at the 3-4 day recovery time at the present time. I insert a chewableacidopholus pill in my vagina 2x's per day. It is cheap and not too messy. In the past, Ihave tried gyne-lotramin, monistat, flagyl, diflucan, triominicine (sp?) the anti-yeastdiet, acupunture, herbs, clay, pelvic floor excercises, boron, aloe vera, witch hazel,calcium citrate etc. I have given up almost everything there is to give up (alcohol,sugar, caffine, sex, bread etc.) Now that I have discovered the acidophilus and I am somuch better than I have been in years. I have also found other things that help me. Reducestress, it causes more yeast in the system. Use the vaginally inserted acidophilus pills(chewable) This is a good bacteria and it eats yeast. Take garlic. Eat garlic. Yeastdoesn't like it. Avoid sugar and caffine. Yeast like them. Use Astro-glide as a sexuallubricant. It is very slippery. Wash clothes in fragrance free detergent. (This helps withthe sensitive skin issue of my problem) Eat mostly vegetables for carbohydrate intake.Bitter veggies are better than sweet. My new doctor has finally admitted that I have aproblem. I had to show up for my appointment in really poor shape from repeated sexualintercourse in order to convince her that I was sick but she ended up giving me somereally strong steriods that don't really do the trick but do relieve the swellling alittle bit. I hardly need to use them though because I have found the acidophilus thathelps so much more. I got the idea from someone mentioning yogurt in this guestbook. Itried both yogurt and acidophilus many years ago but since they didn't "cure" meI gave it up. Now that I am not looking for a cure but symptomatic releif, I haverediscovered their usefulness. I feel better than I have in 20 years. I hope this infohelps someone out there. I found the stuff about hypersensitivity to yeast in the NVAnewsletter. To everyone out there, keep searching and keep strong.
CommentI recently got confirmation from an OBGYN (after dignosing myself) that I havevulvodynia. Well it was a toss up between that and vestibulitis but he assures me it isvulvodynia. I can relate to nearly every one of the your entries. The thing which is sofrustrating about my condition is how variable the symptoms are. Sometimes I have pain,sometimes itching, sometimes burning, bladder symptoms (the number of times I've givenurine samples to find out if I have a infection is phenominal). usually a mixture of allthese symptoms. Some days I'm lucky to have none. The thing I'm scared do death about at the moment is the fact that I've started seeingsomeone new and I'm anxious about,not only telling him about this but the impact it willhave on our relationship. In fact, I actually considered staying with my last emotionallyabusive boyfriend because, hey, at least he knew about and accepted my condition. I'm notjoking, that this has caused me to be suicidal when it was at its worst. We have a rightto be happy and I think much more research is needed. (BTW I'm from near Sydney Aus.)
CommentThis message is for Lynn. I had surgery in 1997 that was extremely sucessful. I had avestibulectomy (I think) with vaginal advancement. It completely took all the pain away.However, a possible complication of the surgery is to get Bartholin cysts because they maybecome closed, and this happened to me. The doctor that did this surgery was an excellentsurgeon (Dr. Marinoff in Washington DC- people come from all over the US for surgery withhim for vulvodynia/vestibulitis), but he had no bedside manner and he was to expensive (hewasn't covered by my medical), so when I ran out of money, I just suffered with thesecysts that were extremely painful.Finally, I switched HMOs and found a good surgeon. I hadboth Bartholin glands removed and the cysts have gone away. I have a lot of scar tissurenow that is a little sensitive, but for the most part I have very little pain. I use theEmla numbing cream when I have discomfort and it helps so much. Even though I wasuncomfortable for awhile with the cysts, I DO NOT regret having the original surgery,because it took away that horrible burning that I had constantly, and especially duringsex. Sex was impossible for me then, but now it is enjoyable, as long as my partner issomewhat gentle. My doctor that did these last surgeries is Dr. Abbas (in Maryland) and heis the most kindest, gentlest, and knowledgeable doctor i have ever met. I don't know howI would have gotten through this without him. He allows me so much say in everythingbecause he says that I have been dealing with this for so long and that I know what Ineed. The funny thing is is that he is a gyn oncologist (cancer) doctor and i wasoriginally sent to him because my surgeries were very delicate operations and they felt hecould help, and I have been seeing him for almost two years. My advice to anyone is thatif your doctor won't listen to you, find another one! I went through ten doctors before Ifound Dr. Abbas- don't settle for someone that treats you bad, won't listen, or tells youit is all in your head (which all happened to me). Good doctors are out there and theywill help. Feel free to ask any other questions.
CommentTo Liz in Oz; don't give up! I'm sure vulvodynia has had us all weeping in terribledespair at some point (I know it has me) but this site alone has so much useful info ithas certainly saved me from going crazy. I'd never have heard about capsaicin cream if I'dnot been reading this site, which has helped me. If you haven't tried using cottonsanitary towels or non bleached toilet paper then they can really help too. I understand what you say about worrying about a new relationship but the guy I metjust as my vulvodynia was starting is now my husband so if you have a good andunderstanding guy then I am sure you will get the support you deserve. Much has beenwritten (for instance in Women's Bodies, Women's Wisdom by Christiane Northrup) aboutvulvodynia and other gynae problems being caused or aggravated by unhappiness and stressso the last thing you need is an emotionally abusive boyfriend! Good on you for gettingout of that and I hope the chap you are seeing now will cherish you and know there is moreto a deep relationship than sex. I have started having bladder problems like you in the last month and the doctors seemto have no idea (all sorts of diagnoses from ovarian cysts to kidney infection!). Seems itis more likely linked to vulvodynia so thanks, just reading your entry tonight has helpedme.
CommentTo Liz in Oz; don't give up! I'm sure vulvodynia has had us all weeping in terribledespair at some point (I know it has me) but this site alone has so much useful info ithas certainly saved me from going crazy. I'd never have heard about capsaicin cream if I'dnot been reading this site, which has helped me. If you haven't tried using cottonsanitary towels or non bleached toilet paper then they can really help too. I understand what you say about worrying about a new relationship but the guy I metjust as my vulvodynia was starting is now my husband so if you have a good andunderstanding guy then I am sure you will get the support you deserve. Much has beenwritten (for instance in Women's Bodies, Women's Wisdom by Christiane Northrup) aboutvulvodynia and other gynae problems being caused or aggravated by unhappiness and stressso the last thing you need is an emotionally abusive boyfriend! Good on you for gettingout of that and I hope the chap you are seeing now will cherish you and know there is moreto a deep relationship than sex. I have started having bladder problems like you in the last month and the doctors seemto have no idea (all sorts of diagnoses from ovarian cysts to kidney infection!). Seems itis more likely linked to vulvodynia so thanks, just reading your entry tonight has helpedme.
CommentSomeone mentioned using chewable acidophillus tablets vaginally. I have taken themorally for improved digestion and remember them having quite a bit of sugar in them. Theones I used were strawberry flavor very sweet. I would think if you were going to useanything like this it would have to be sugar free. Am I correct that the sugar would fuelthe yeast? I have read of ladies applying yogurt vaginally to sooth the area, maybe it isnot a problem.
CommentHi Elizebeth. Thank you so much for getting back with me that quick. I'm not sexuallyactive and hadn't been for nearly 2 years. But when I do begin to have sex, I will be sureto go try that Emla cream. I hope it's not strong. I don't want it to make me itch andirritated. Anyways, I am very happy for you that you are doing fine now. Take care.
CommentElizabeth, I also live in Maryland and I was very interested in what you had to sayabout Dr. Marinoff vs Dr Abbas. Where is Dr Abbas located? Feel free to e-mail me. I'd beinterested in hearing more/thanks.
CommentHi Elizebeth. I also wanted to ask you how long did it take for you to completely heal?I wonder because I feel a lot better but my perinium hurts after I pass a bowel. I guessbecause I put pressure on it. But did you go through this also? Id like to hear all aboutyour recovering process. Thanks again. Is there anyone else out there who had surgery aswell? I'd like to hear the stories of how long it take for you all to heal.
CommentThis is for the woman who said she'd been working with the Vulvar Pain Foundation andthen with Dr. Solomons directly. What is HTO and how do you apply it? I can't find anyreference to it on the Foundation site and, although I, too, am a member of the FoundationI haven't heard much about this.
CommentI have VV and it seems that it flares up when I am under lots of stress...when I seemto relax it goes away or calms down after a bit. Does anyone else notice this???
CommentHas anybody ever tried Viacreme? I wonder if it works. LM
CommentDoes anyone with vulvadynia also experience muscle pain? I've read that women withvulvadynia are usually inclined to develop fibromyalgia. This part of the disease is newto me. I still have the burning, but now I've developed the muscle pain as well. If anyone can help with this, please post. Thank you.
CommentHi Debbie...Please read my post on 3/22 above.
CommentTo the lady who asked about stress I find that my vulvodynia gets worse under stressalso. It is hard to not get stressed with this condition but I try to stay calm which doesnot always work. Also to the lady with muscle pain a lot of ladies get fibro they do notknow why this happens. With fibro you also get very tired along with muscle pain I knowsomeone who has it.
CommentLynn: I would say that it took me close to four months to completely heal (for all ofthe tissue to heal). But, like I said, I ended up with Bartholin cysts, so I was stillvery uncomfortable for about two years before I had the glands removed. Be patient, andtake it easy. Don't do anything strenous and rest as much as you can until you arecompletely healed (even if you feel better). I used to take warm baths for about a halfhour each night. sometimes I would use vasoline to moisterize the skin because sometimesit would feel dry and feel as if it were tearing when I would walk or bend over. Also, thevasoline helps if you have any stitches left because it keeps them from pulling andripping the skin so much. The main thing that I did was baby myself because I didn't wantto do anything to jeopardize the healing and take a chance of the pain coming back. I hopeI answered your questions-feel free to ask anything else.
CommentLynn: I also forgot to add that you should make sure you use a stool softner or even alaxative to help you with a bowel movement. I used a laxative periodicaly to keep fromputting any extra pressure down there-it will keep you from straining. I actually had tostart doing this because I was straining and busted a bunch of my stitches (and the areanever did heal as nice as the other side). I used Milk of Magnesia, which was very gentleand worked very well. It really does make a difference.
Commenti ahve had vulvodynia since the age of 6, but chronic since 1992, following a bout w/ abacterial infection. I was prescribed Flagyll and have never been the same. Diflucan alsoexacerates symptoms, as well as any antibiotic. Stay away from them! I am adding mycomments, and hopefully I will be able to help some of you out there. Please get a copy ofthe Low Oxalate Cookbook thru the Vulvar Pain Foundation. The end of the book tells youwhat foods to eat as well as avoid. Not all foods may agree with you, even if they are lowin oxalate, so you have to be your own tester. Also, a heating pad to the area may be ableto prevent a flare up. I use it everyday, whether I need it or not. Next, make sure youhave ruled out Fibromyalgia. Many of us have it and do not know it. I was diagnosed inJanuary of this year. Get a book on it and read up. It is possible to have few symptomsand dismiss it altogether. Treatment with Guaifenesin will alleviate symptoms. Also, havethe thyroid tested. It, too, may cause all kinds of urinary problems includingInterstitial Cystitis. I feel that if there is an underlying problem, a cure will beharder to achieve. If all is ruled out, then it's time to move on to treatment.The LoOxalate diet is the most important diet to follow. I used to take Calcium Citrate (up to 8pills daily), but found that if I cut down, the pain decreased. That may be what iscausing the problem. You may think about decreasing, as your body does not need so muchanymore. I find I am better without taking any at all. Also, those who became vegetariansmay have noticed that is when their problems began, so you should look into that. Forthose of you who eat a lot of yogurt, I find that although it is low in oxalate, it haslive active cultures and that could be what is causing a flare up (like an antibiotic?). Icannot have cream cheese either, I do not know if it the Xanhan Gum of the Carob Bean Gum.Carob is low in oxalate, but I cannot tolerate it. You are the best judge of your ownbodies. You have to be willing to test each food individually and be patient. Are youtaking Ox-Absorb (L&H Vitamins)? I take it with evrything I eat, even if it is low inoxalate. I take 5 with meals and drink loads of water. it helps!!!! Also, I notice thatwhen I eat 3 meals in a day, I have increased pain. If I have one meal in the morningalong w/ Ox-Absorb, then wait until at least 5 in the evening to eat (5 ox-absorb), w/ nofood inbetween, my pain is far less, sometimes no pain at all. Try it. eat 2 large meals aday, but that Ox-Absorb is a Godscent. Also, even food that does not bother me at all mayif I eat it in excess. I think that overeating causes the body to absorb TOO MUCH and notknow what to do with the excess. Almost as if it is being stored away somewhere and usedlater, prolonging pain. I haope that this info will help some of you. Please email me andlet me know if anything helps. Good Luck and remember, DON'T GIVE UP! I pray for all ofyou everyday. You can email me anytime if I can help I will. I am fighting for disabilitynow, thus nit working at the moment. I am on the computer much of the day, so if you needsupport, I ama click away. Good Luck! Laurel
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CommentIn all of my excitement and trying to write too fast before I was logged off due toinactivity, I forgot to mention that chemical inhalants are a major cause of pain. We takefor granted the chemicals we ose on a daily basis. I cannot tolerate hair spray. Even whenI spray it outside and wait there until it dries, it is still absorbed through the body.Also, you are inhaling it all day long once it is sprayed. The same with householdcleaners. Perfumes are irritants. Do NOT use them. The best luck I have had withdeodorants is Almay Clear (fragrance free). I apply a very small amount. I really hoprthat this helps. Stay natural girls. And buy organic meats and fruits if at all possible.Fruits are sprayed with pesticides! Look at all labels on food. Avoid cheeses with toomany chemicals like sodium Citrate (like packaged cheese). Stay as simple as possible. Ifa label on dairy says enzymes, it is okay to eat. Cut down on the salt intake, and use seasalt if it is available to you. That's all girls. The best of luck to you all. I amthinking of you.
CommentThanks much again Elizebeth. I will go perchase the milk of mag tomorrow. I wonder howdid you know that the stitches popped? Did you see them for yourself or did the doctortell you? I hope I didn't pop any of them. I got back for my 2 month follow up on 4/16. Ihope he can check all that out for me.
Commentwas hoping for a straight answerto my question as to why my husband just refuses to puthis hands on me during sex.he just lies on his back and I have to go to work. how can aman be so inconsiderate , insensitive to my feelings, furthermore he has no intentions ofchanging.
CommentHi, Just wanted to remind you that if you live in Israel we do ahve a support group inJerusalem. Please feel free to e-mail me. Shalom, Judy
CommentTo Marie: You asked why your husband did not touch you while having sex. I hope you arenot offended by a man responding but I can give some insite as a guy. There could be manyreasons, he may find touching you too stimulating, he may be distracted by the sensationshe is feeling. You did not give alot of specifics to go on, such as how long have you beentogether? has he always been like this? is he in good physical health? have you expressedyour feelings on this to him? I love to kiss and touch and get every bit of sensationgoing between my wife and myself. There is something going on with him and I'm sure in theright setting he will open up and express himself. Best of luck and do you suffer fromthese illnesses? Maybe he does not want to hurt you, that is always on my mind .
CommentGlad to know I am not alone!
CommentLynn- I felt the stitches break and I could see them with a small mirror. don't worrytoo much about that- if they break-you will feel it. Plus, even if they break, there isnothing they can do-they won't restitch you because of the chance of infection. That areadidn't heal as "pretty", but it is just fine.
CommentTo Barbara: I emailed you at your email address about my doctors in Maryland. If youdon't receive the email, just write me back at this site.
CommentMarie P- I think Frank is right, you didn't give us much information about what'sreally going on. Do you or do you not suffer with these conditions? I don't know what'sgoing on, but from what you have said, I would think that he's probably cheating on you. Iwant to know if you do have this condition if so, how long and I also want to know howlong were you two married and how long has he been acting like that? Give us more info sothat we can give you some advice.
CommentWhere do I start... It is sooo comforting to know that I am not alone in my strugglewith vaginal pain. I just discovered information about vulvodynia tonight and am trying toread as much as possible. The more I read, the more I feel that this is what is wrong withme. As I read the other entries in the guest book I am compelled to share my story. Myproblems started when I was 20 years old. I had 2 serious relationships before that andhad no problems whatsoever. Both of the guys were virgins (99.9% sure of this) andeverything was fine. When I was 20 I met the man who I am now married to. On a side note,he is uncircumcised and larger then the previous guys. Anyhow, the first time we tried tohave sex began this nightmare. He had some spermicidal depositories, and he put one insideof me so we did not have to use a condom. I felt some discomfort and he had a verydifficult time penetrating me. After a while we kind of gave up thinking it was nerves. Ifelt sore and irritated afterwards, and later that night I could NOT go to the bathroom.It felt like someone was putting a knife in me. I tried and tried and by 1am I could nottake it anymore. He took me to the ER and they said I probably had a urinary tractinfection. They tried to get me to pee but I could not. Finally they put a catheter in andemptied my bladder. They then asked if I ever had a pelvic exam -- which I had not. Theydecided that this must be done then and there. I was extremely nervous about it and didn'treally want to have it done by them. They did it anyway and that was the single mostpainful thing I have ever endured. The nurses held me down and I was screaming out in painduring the whole ordeal. I stayed and waited for the results, which came back positive forchlamydia (not sure of spelling). This was a huge blow for me considering I had not beensexually active (before that day) for over a year. Plus my previous partners were virginsdid not have anything either. In the next week I was treated for both the UTI and STD, andmy boyfriend (now husband) was tested for everything. His tests all came out negative, buthe was still put on the medication. The next few months are kind of a blur –I’ve tried to forget the pain and suffering – but this is what I can recall. Istill had pain and was treated for the following: yeast infections, strep B infection,bacterial vaginosis, and another UTI. On one other occasion we tried the spermicide andagain it caused severe irritation. So during that time I went on the pill. I had anultrasound because I also had some pelvic pains. Nothing came out of that. We never wereable to have full intercourse during that whole time period. Any attempt at penetrationwas futile because it felt like a hot knife was stabbing me there. One of the doctorsfinally said I should see someone who knew more about painful sex. So about nine monthsafter the ordeal began I saw a new gyn. She wanted to do a biopsy of the tissue at myopening – where it was now painful to the touch. That came back positive for HPVCondyloma. How I contracted that – again no idea. I had a surgery to remove some ofthe tissue at the opening and was stitched back up. A month or two later I had anotherbiopsy which came back negative. I don’t remember now, (kind of blocked it out), butat some point in this time period I was given a topical cream for the genital warts. Thisscalded me and I stopped using it immediately. So after that whole time period, my patienthusband and I tried to have intercourse. The pain was just too unbearable. The doctor saidit must be the scar tissue from the surgery. She prescribed some xylocane, and said to tryand “stretch out” my opening. Tried that and was unsuccessful. In addition tothe pain, I also lost all sexual desire. I don’t recall when, but some time afterthat I went off the pill – what was the point? Well, after going off it, my libidocame back and we slowly worked at intercourse. After a while we were able to do it –with some restrictions. It was still somewhat painful at the beginning and the end, and insome positions. Afterwards I would burn when I urinated. Anyhow, since we had resumedintercourse I went back on the pill. Immediately it halted my libido and brought back thepain. After two months I gave up on birth control and sure enough we are now able to havelimited intercourse. None of the doctors I went to were able to help me – I went offthe pill with self-diagnosis. I am now 25 and lucky to be married to a wonderful man whohas been with me through this whole ordeal. It has not been easy for either of us.Everything I have read tonight leads me to think I can finally put a name to my troublesand I am eager to find a specialist in my area. Not a day goes by that I wonder how andwhy I have this horrible problem, and if I will ever have a normal sex life. At least nowI know I am not alone.
CommentTO DEBBIE (WHO POSTED ON 3/30 REGARDING FIBROMYALGIA): I've had vulvodynia since 1994, but now seem to be experiencing"fibromyalgia-like" sympoms: muscle soreness and nerve pain behind one knee andat both elbows. Tingling in face, hands and feet. I swear I am not making this up: it'slike I can FEEL the electricity running through my nerves, like you can hear the"humming" sound at a power plant. My nerves just feel charged: I don't mean"anxiety" when I say nerves, I mean the actual nerves. And, I am getting morestatic electricity lately: in my clothes, in my hair, shocking myself on metal things,etc. It's bizarre and truly scaring me because I don't understand what is happening. What kinds of sympoms do you have? Have you been diagnosed with fibromyalgia? If so,what kind of doctor makes a diagnosis like this? Thanks for any help you can give. This is scary. Deborah
CommentCan somebody please tell me what EMLA stands for? I know you mentioned that it numbsbut what exactly is it? I have 2% lidocaine. Is it similar? Thanks, LM
CommentIt is wonderful for me to read that women with Vulvodynia can be connected via the web.I just turned 22 and was diagnosed with both VV and Vulvodynia this past October. Itstarted when I took an antibiotic Cipro for two weeks to get rid of a stubborn sinusinfection. Almost immediately I got a yeast infection for my first time. Monistat helpedimmensely, but whenever I stopped, the yeast infection returned. I began using Monistat,Diflucan, and Terezol, although they were no longer effective. Instead, I developedterrible internal burning, and I felt as if my insides were being torn out. I went to theEmergency Room, and they assumed that I was having an allergic reaction to the anti-fungalcreams. After I stopped the creams, everything felt fine except for the burning in thevulva. This never went away. I was lucky to be immediately referred to the specialist Dr.Elizabeth Stewart in Boston, MA. She diagnosed me immediately and put me on Neurontin andElavil. Neither seemed to work so three months later she switched me to Nortriptyline,which I am gradually increasing in dosage. I am also on a low dose of Celexa for thedepression and anxiety which resulted from the constant burning and pain( a doctor in NYtold me she treated women with VV very successfully with Celexa alone).I have been on thiscombo (as well as estrogen cream at night and Lidocaine several times a day, and calciumcitrate) and feel some relief, although still terribly uncomfortable all day long.Intercourse is much too painful. I feel discouraged because I seem to have exhausted somany therapies, although I know it has only been about 6 months. Do people gradually getbetter with constant ups and downs? I am soo afraid that I'll never improve past thisstage. I have been unable to finish my senior year of college. I returned last spring fromstudying in England, where I fell in love with a wonderfully warm young man, who is stillvery much in the picture. Even with his support I cannot help feeling inadequate since Ihave been forced to leave boston and move back in with my parents on the Cape. If anyonewith Vulvodynia lives near boston, I would love to speak with you. FRANK, I am struck byyour dedication to understand your wife's disease! I hope so much that each of us willfind a useful strategy, although some days I find it too hard to go on living with thishorrible affliction.
CommentTo DOVE HELENA: Ask your doctor to test you for an ATYPICAL yeast infection. The lab should watch thatculture for a couple of weeks. The yeast infection that I had was not your typical kind.It was what they term "atypical." A rarer version and more stubborn. What helpedme immensely was a treatment of boric acid vaginal inserts and Nystatin vaginal inserts. Still have the vulvodynia, but once I beat the yeast, I felt much better than I did. Vulvodynia has it's ups and downs. I have days I really hurt, and I have days I'm nottoo bad. Hang in there.
CommentTo LM: EMLA cream is like lidocaine. It contains 2.5% lidocaine and prilocaine 2.5%.For me, I used the straight xylocaine (lidocaine 2.5%) ointment and it irritated me, so Itried the EMLA cream, which was helpful to me and soothing. I know that different creamswork for different people, but for me the EMLA was not as harsh and irritating as thestraight lidocaine ointment. I have been using EMLA for about a year (once a day) and sofar have had no irritation or side effects from using it. Hope this helps.
CommentTo Dove Helena; You are not alone. Do you belong to the Vulvar Pain Foundation? Theyhave a lot of useful information. Dr. Clive Solomon's has helped immensely. He tests yoururine and times citrate pills to the levels of oxalate in the body. That particulartreatment didn't help me, but many others have been cured or helped. He also treats withglucosamine, HTO, and Ox-Absorb. The best thing I have done is the low oxalate diet(vital) and Ox-Absorb in combination. I literally had pain 24/7 until these two things.Others do all four. You have to be patient and let the treatment work. I urge you tocontact him. He is in Glendale, Co (303) 388-7140 or write Scientific Connections 164 So.Fairfax Street Denver, CO. 80222-1141. There are days when I have no pain at all and Iconsider that a milestone. If you need someone to assist you, please email me anytime. Iam recovering slowly. I shun antibiotics in any form. I believe that they have left me inthis state. There are other measures I have taken to alleviate pain. And they are working.I live in the Lowell, Mass. area. Have you been diagnosed with fibromyalgia? Do you havesymptoms? Do not give up hope. I have taken Elavil as well for the fibromyalgia. It didnot help and I weaned off of it. I am taking Guaifenesin for the fibro. But the bestrelief is the low oxalate diet and the Ox-Absorb. Let me know if you are following thediet. Good Luck and keep in touch. Laurel
CommentTo the woman who was interested in HTO. All it is is an extract of beef, but it hasqualities that regenerate tissue, like the painful tissue in the vulva. It"plumps" the skin so that it is not so thin. it has helped a lot of women.Myself, it did not, but I think that is mostly due to the fact that my pain is under theskin. I don't have that rawness that some do. Also, I believe that Dr Solomon's won'tprescribe it until you have tried his other methods, but you could inquire. The HTO is inpill form. I believe you work yourself up to 6 a day and then gradually decrease. TheSolomons' address is in the previous entry.
CommentI live in the Seattle area and have had vulvovestibulitus for about 2 years, on andoff, mostly with pain on the right side. I also have been suffering from anal skinproblems. I have to keep the area clean, and then put on Eucerin cream. The anal skin areais very dry, and the Eucerin cream is a must. Even with it the area is irritated. I seemto be allergic to any other creams like hydrocortzone. Anyway i wondered if the anal skinproblems could be related to the vulva problems and if any others had this. Please reply.The combination of the two is almost too much to take. I have been to many doctors, butwith no cure.
CommentTO MARY M: I also have dry, irritated anal skin and I believe that it's all related toVulvodynia. I did read that someplace. My vulva is dry sometimes too. I just wanted to letyou know that you're not alone with that problem.
CommentI totally understand where your all coming from. I've had it for approximately 5 years.Until about 6 months ago, it was terrible. I found two specialists both women about 14months ago but changed right after to another HMO. They told me what it was, after abiopsy. But of course going to another HMO I had to have another biopsy & with what Ihad already learned & the new gyn.s help I'm alot better. She has me on 25 mghydrocortisone suppositories, & Clobetasol cream 0.05%. Now I'm also trying thecalcium citrate but I just found out it shouldn't have vitamin d in it. And the diet isnext, I didn't realize how many things have oxilate in them. Those of you who haven't heard of the Vulvar Pain Foundation its in North Carolina& they are studying this terrible stuff. Its tax deductable, & they have greatinformation. Here is the address: Vulvar Pain Foundation Post Office Drawer 177, Graham,North Carolina 27253 USA They have a low oxilate cookbook, & will send newsletters.You can also order back issues. It is well worth it. I would like to start a group buy my husband is worried about putting information suchas email address on any site. But I'm going to keep trying. I live not far from someone onthis site but her email wouldn't work. I understand how anyone feels, your privacy is veryimportant. I feel very fortunate to have a very understanding husband, but let me tell you itstill does a number on you mentally no matter how old you are. I'm 57. I live below San Francisco, in the bay area. I wish I could give each & every oneof you a hug. Dragon Lady
CommentYou can start a support group through the Vulvar Pain Foundation. Joanne or Rose canhelp you. They also have a list of people in your area that you can correspond withsafely. Good luck. Laurel
CommentTo Sue, Thanks for your note. It is nice to know I am not alone. Have you found anything that helps with the dry anal skin? It is not exactly a subject you can go aroundasking people.
CommentHELP!!! Been suffering for about six months now - no official diagnosis yet. Doesanybody have the name of a specialist in the San Francisco Bay Area?
CommentTo Dove Helena & Deborah: Dove I understand pain because of the experience. Manysurgeries as a child and adult along with kidney stones have made me no stranger to it. Itry to be compassionate and remind myself that this was not a self inflicted problem. Mywife has been through so much and this is so unfair. I'm forty eight and still have astrong sex drive which does not make the problem any easier to deal with. I also lovegiving my wife pleasure but with the vulvular tears and occassional clitoral tear I canonly hold her and kiss her. Sometimes that has to be enough. I mentioned Deborah becausewhen I was first married my wife had a yeast infection and her gyno gave her monistatwithout ever doing a culture. I questioned the Dr. and was made to feel like a insensitivejerk. We have to question medications and procedures. Keep up the good work and DragonLady it is too bad we don't all hug more often. Bye!!!!
CommentTo Mary , I just want you to know that when I had had my vulvodynia( and I'm 7 monthsfree of it), my anal would hurt just as much as my vulva did. It was all connected. But Ino longer suffer any more. I use to put vanicream on my vulva and anus every night aftergetting out the shower. But up until a month ago, I no longer need to rely on it. I'm verythankful for that. It has gone away 8 months ago because I've changed my soaps and becauseI used that cream. But a month ago I realized that I've been doing just fine for 8 monthsand that I probably don't need it any more. And sure enough, I'm doing fine. I stillsuffer a little with vestibulitis. But it's not so bad now since I've had the surgery 8weeks ago. Anyways, try the vanicream. It has done some serious wonders for me. It's not asteroid, has no irritants, it's pure and natural moisturizing cream to heal and protectyou damaged skin.
CommentTO MARY: I sometimes put vitamin e oil in there. It's very soothing. Also, I noticedthat when I have to wipe a lot back there that it feels very dry later on. I hope the eoil or something else will work well for you. Sue
CommentDear Listmembers: I have installed a new search box on the homepage of vulvodynia.comlocated at: http://www.vulvodynia.com This searchbox allows you to conduct a search of the "entire web", the entire"vulvodynia.com website" or only the "vulvodynia.com guestbooks". Forthose of you looking for specific words in the guestbooks this should be a great help. Continued thanks to all of you for your interest in the vulvodynia.com guestbooksHoward I. Glazer Ph.D. vulvodynia.com owner
CommentHas anyone found acupuncture to be of any help? I am thinking of trying it although itis quite costly. It looks as if it might help circulate blood flow and reduceinflammation.
CommentTo Dragon Lady, It is nice that you want to reach out and start a group .. I also am inmy fifties and it is sad to see so many young ladies starting to have this problem at suchan early age. I have had vulvodynia for to many years and now at least I know what it is..If it was not for the Vulvar Pain Foundation I still would not know what I have. Someonetook the time to point me in the right direction and so many women on this site take thetime to care. I think this is wonderful we never had this many years ago when i started. Iam trying the oxalate diet now a and it helps somewhat so good luck on it. I also have thecookbook and I too recommend it highly. Hope you do great on it.
CommentAcupuncture did not work for me, although it seemed to result in a period that lastedfor three months.
CommentSarah, I really think you should see Dr.Toth in New York. I firmly believe you have aninfection still, but you need it properly diagnosed. He has a lab right at his office,which is very well respected. It is important that your cultures do not sit for hourswaiting to go to Smithkline. Also, if anyone ever tests you again for HPV (warts) do notdo anything unless they do a test for hybridinazation. This is VERY IMPORTANT. Smithklinesaid I had HPV, but my doctor did not believe it, so she had the tissue sent to a vulvarspecialist, who agreed after analyzing the biopsy that there was not a presence of HPV.Well, I was confused about what to think, so I paid over $300 for the hybridinization (HPVcomes in many strains, this test tells you what strain/breed of HPV you have) and theentire test came back negative!!! I don't want to upset you, you may very well have hadHPV, most of the population does, but I don't want you to endure more treatments if it isnot warranted. You talked about several STD's that you have had, which causes me to think they arestill missing something...you are definetly not alone, I have only slept with 6 men in mylife, and I have had 4 sexually transmitted diseases, and they were all educatedsuccessful men. NO one is willing to talk about, or realize how terrible the STD problemis. On this website I have caught a lot of flack for hypothesizing that vulvodynia couldbe an infection, possibly sexually transmitted. Anyway the following is a little about myexperience.... I suffered with vulvodynia for eight years. My symptoms were off and on itching,constant feeling of being raw and inflamed, change for the worse in vaginal odor, afeeling of cut glass, painful lymph nodes, and sometimes like acid was running down myvulva. I also had dark redness around the opening to my vagina, and what looked to me tobe an overall inflammation. I did the usual story of going from doctor to doctor. Iinsisted on cultures over and over again. To me my symptoms meant bacterial infection.Well, of course for years no standard cultures came back with anything to treat. Years into my problem my doctor cultured me for ureaplasma urealyticum. It came backpositive. The doctor prescribed Doxicycline 100mg b.i.d.for 10 days. Around the fifth dayof the meds it was miraculous!!! I felt so much better!! Several days after stopping themeds I relapsed. My doctor said she had seen that in some of her other vulvodyniapatients. I argued that it was not enough meds and my spouse should be treated. Icontinued to have trouble convincing my doctors. Over the next two years now and than a doctor would prescribe me an antibiotic eitherto try to fight the vulvodynia or for something else. I now had more data and I tookpictures of my vulva and the improvement on certain antibiotics. Doxicycline worked,Augmentin worked, Flagyl worked, Zithromax did nothing. I had also begun to develop pain on my lower left side that I believed was my colon,but was near to my ovary. I finally found a doctor in New York, Dr. Attila Toth, who believed/agreed with me. Heconducted cultures on both my husband and I, and told MY HUSBAND AND I to takeclindamyacin intravenous. After the Clinda I.V. I no longer had pain in my lymph nodes, the odor from my vaginaldischarge was substantially improved, and my pain was about 75% better. My overall rednessimproved significantly and the deep redness at the opening of my vagina was slightlyimproved. I still got irritated easier than I did 10 years ago, but my daily life wasgood. I was no longer in discomfort every day. I think the ongoing infection caused damageto the tissue (biopsy showed sclerotic tissue and eosinophils) hopefully over time itwould get better and better. Eventually I had surgery for fertility reasons, and it proved that I had extensiveadhesions, plus endometriosis, and fibroids. My left ovary and Fallopian Tube on my leftside (the side I had an ectopic pregnancy) was all meshed up in a ball. My colon on thatside was adhered to the ovary/tube mess. My surgeon was able to separate my colon from theovary, and my digestive symptoms have cleared up about 95%. My surgeon said that it seemedas if there had been a long-standing infection creating all of the adhesions!!! What I hadsaid all along. I cried for a week. The medical community had allowed me to becomeinfertile. Immediately after my surgery I began to have bright yellow discharge and bright yellowcloudy urine. Finally, after four months of complaining about the discharge and notgetting pregnant (remember I always conceived easily prior to surgery) I begged forantibiotics. I took some orally and my symptoms subsided during the administration of themedicine, but returned after stopping. I decided that the surgery had let whateverinfection had still been there run a muck…probably leading to new scar tissue thatwas adhering my tubes in a way that no longer allowed for conception. Once again I decidedto go to Dr Attila Toth, who prescribed for my husband and I another IV. This time we usedMefoxin and then Unasyn. Mefoxin was chosen on the basis of my cultures and Unasyn waschosen on clinical observation of my relief in symptoms when using Augmentin orally. Following this IV I feel 95% better. I still have minor discomfort every so often, andmy periods seem to aggravate my vulva, but on the whole the IV was miraculous! Intercourseis not painful, although I still need a little extra lubrication. In the end I am still left with anxiety when I need to see a doctor. I go over in mymind a million times, how I will present whatever is wrong with me, so that I will betaken seriously. I will try for a few more months to become pregnant, on the hope that thelast course of IV antibiotics gave my reproductive tract a chance to heal, but there is agood chance I am facing either IVF or adoption. I think that we have a form of PID, an infection in the tract of the reproductivesystem, and our immune system produces junk that is in our discharge that aggravates thevulva. I think this is why we see many woman form other autoimmune diseases that have vv.I think the body continues to produce immunilogical fighters and they begin to damageother cells, tissue, and organs. I do know a few doctors who agree with my hypothesis, but the majority of the medicalestablishment does not. Dr. Toth's website is www.fertilitysolution.com His focus is fertility, but he is anOBGYN and Infectious Disease doctor, very interested in infection of the Genital Tract. Good Luck! Jennifer
CommentDOVE HELENA: AccuPRESSURE seems to help me with lots of different problems. Hard to say with thevulvodynia, since my symptoms flare up and down. But, there is a really good book byMichael Reed Gach; it's called Acupressure's Potent Points: A Guide to Self-Care forCommon Ailments. I paid something like $16.00 for it.
CommentThank you Lynn and Sue for your suggestions. I will try both of them.
CommentHave you ever thought of legal action so others won't be put through it? I have had myshare of STD's, and I even felt better for a couple of days after treatment, but the paincame back far worse a couple of days after the treatment was stopped. I have had vulvarpain since childhood, so I know that it is not the cause. it grew worse as I got older. Ithad a lot to do with sitting all day at school. I believe that antibiotics played a hugerole. I had strep on and off for 2 years, the penicillin would not work after a while, asI became immune to it. So, I was on antibiotics for 2 years and that did a number on me. Itoo have HPV, but mild. The colposcope I had done revealed only a few warts deep withinthe folds of the vagina. It was almost missed. That was 8 years ago, and now that I amfeeling much better, I don't think that has any affect on me. The foods we eat nowadayshave so many chemicals in them, what is to say that they don't play a big role. Look atcheeses and yogurts. They contain cultures like Natamycin (bacterium not much differentthan molds in penicillin)and live cultures. For those sensitive, please be warned. myurine will be bright yellow for days after consuming, not to mention strong smelling. Ifyou have a Wild Oats Market in your area, it's a Godscent. Good luck.
CommentThis is to Deborah concerning muscle pain. I have gone to a massage therapist over the past two weeks and my first visit wasmiserable. To the point of tears. I was afraid to go back, but I did and my second sessionwas much better. My arms, legs and neck were sore even to the touch. After the first session, I wassore, but after the second session I felt much better and had much more energy. I am trying to walk at least 1//2 an hour a day and see if being a little more activehelps with the body aches. The problem in the past for me has been that walking aggravatesmy vulvadynia. I keep trying though. As for the electrical feelings that you have, I too have had electrical sensations inthe labia, but those have subsided. I follow the low oxalate diet, take 1calcium tab alongwith 1 glucosamine tab, I also take effexor xr 37.5 mgs 2x's daily for help with the painand lorazepam when the pain is really bad. Recently, I have had my estrogen increased and it has helped me a great deal. I use thecombipatch and take 0.5 mgs of estradiol by mouth. I always felt better when I had mycycle, and my doctor felt that part of my problem was hormone related. I hope this has been some help. I pray for us all and keep pressing forward until thereis a cure.
CommentFor those of you willing to try Ox-Absorb, you can order it through www.vitamins.com (Land H vitamins was bought out). It is nothing more than natural sea vegetation. There areno side effects, except for occasional bloating. It is a natural fiber, so it is great forconstipation as well. I personally take 12 per day, which is what the dose is. Take 4 withw/ each meal. Take 6 if you eat twice a day. It keeps food from being totally absorbedinto the body and decreases pain markedly. Direct deposit to the intestine. I can't sayenough about this supplement. Really helps you get past a plateau if that is the problem.Remember, that you must follow a low oxalate diet as well or it won't help. I find thatgrains are a big nono, even in small amounts. No cereals, rices, pastas or I am asking fortrouble. If you consume those, try eliminating them from the diet for a month or so andsee if it helps. Took me 2 years to figure that one out. Talk soon.
CommentI am an Spanish woman , and I think I have this disease . I´d like to know anspecialist doctor in this matter who works in Spain to go to his office. And if someone ofthis doctors had worked with Dr. Glazer and knows his treatment, or at least he could todiagnose my problem, I´d need to meet him. I´am really desesperate because my illness is actually serious, and I´d thank a lotevery help about this. Thanks a lot.
CommentI am really concerned about getting pregnant with vulvodynia. My doctor says just waituntil after I get off the Elavil, but my concern is what happens after the Elavil, and Iwant to get pregnant. Is this possible? Has anyone else had success in pregnancy afterhaving vulvodynia? Is there anything else I should be concerned about. I only have theburning when I sit down for long periods of time, when I stand up, it's fine. I guess Ijust want to know if it will affect a baby. If anyone has had a baby w/ vv or vulvodynia,please let me know how it went.
CommentTo Laurel Thanks for suggesting that I contact Dr. Solomons. I have actually already had my urinetested by him and I do peak at certain specific hours. I then wrote him and he called meback at home, which I thought was extremelyy generous. I am not officially following hisorders because I am still following the therapies prescribed by my specialist. I am,however, consumming the citrate and following the diet, although I am not officially partof his pain project. If the other therapies do not kick in soon I will certainly call him.The only two women in my town that also have VV were completely cured by Solomons'therapies, after many years of suffering. Thanks for the advice, keep in touch!
CommentHi, Liz from Australia again, It seems a lot of you have luck with Vanicream. I'massuming it is not available over here but do you have some idea about its activeingredients. Maybe we have a similar product. here's hoping anyway. PS: to kate in the UK thanks for your support.
CommentStephanie, I just want you to know that I was a very healthy and very fit person. I am28 years old and I have 1 child age 7. But when I became pregnant with my second child 2years ago, I was only 2 weeks pregnant and then that's when I started suffering withvulvodynia. I had all kinds of pelvic pains and I hurted all the time. When I was 6 weekspregnant, the pains has gotton so unbearable, I had an abortion. I was very hurt by thisand til this day, I still think of the day I got pregnant and the day I aborted my child.I wish I'd never ever gotton pregnant. And to make it so bad, the man that I was with, hecheated on me and left me for his ex girlfriend. He didn't know I was pregnant or that Ihad this condition at the time he left me. He just left me because he was a dog. I washurt emotionally and physically. All because of him, I now have to deal with this for therest of my life. What ever you do decide to do, I hope it turns out to be the right thing.Take care of yourself. And best of luck to you.
CommentI was talking to someone but I forgot who it was. I think it was Elizebeth that told meto get the milk of magnesia so I won't be costipated. Well I tried that and it's so gross!It almost made me throw up twice! I cannot take that crap ever again! But I do thank youfor letting me know what may work for me, Does anyone else have any suggestions as to whatI can use so that I won't be constipated a lot so that I don't hurt my perinium every timeI have to pass a bowell? Thanks!
CommentLynn - Try taking magnesium oxide supplements to help with the constipation. I hadmajor problem with constipation as a side effect of desipramine. To digress a bit, someother side effects I suffered from desipramine were: very restless sleep (waking up everynight around 3 or 4 a.m. and wasn't able to get back to sleep. It felt like my brain wason overdrive and I could not get it to calm down and go back to sleep.); sweating throughmy nightclothes as I slept. I took my daily dose before going to bed each night (as wasprescribed). Needless to say, I finally took myself off of the desipramine. If you do takeyourself off of desipramine or a like medication, make sure you do so slowly - weanyourself off of it. Abruptly reducing or eliminating the dosage will very likely causerebound depression. I made that mistake last December when I had the flu. I stopped thedesipramine abruptly because I was concerned about taking it simultaneously with someover-the-counter flu medications. I didn't realize until a couple of weeks later that whatI thought was a SEVERE case of perhaps "holiday blues" was actually rebounddepression from cutting off my desipramine intake. I've got much more to add, as I have suffered from vestibulitis for approximately eightyears now. As with many of you, I have tried almost every treatment in the book. I'll postmore soon. I have, however had the greatest success (of any of the treatments I havetried) with physical therapy. I've done a combination of exercises (special stretches,pelvic muscle contractions, etc.) in addition to the biofeedback. It's very interesting tome that two physical therapists and a chiropractor have all had the same comments aboutmisalignment problems with my hips (I notice the imbalance, myself). They feel that thismisalignment is affecting the muscles, nerves, and blood flow in the pelvic area. Mysuspicion is that, at least in some cases, this pelvic misalignment problem is the culpritthat causes vestibulitis.
CommentI am glad that you and Dr Solomon's have spoken. He too called me when I had a problemtiming my citrate, and is so very nice. I do hope that you follow his regimen. It hashelped so many people. if you ever need any information on the various medications, I havesaved everything and can mail you a packet. He sends an outline of treatments and dosagesand results. They are quite helpful. I have also attended a seminar back in 1996 (I waspregnant at the time) through the Vulvar Pain Foundation. It was in Rhode Island. I havenot been since, but the last was a wealth of information. Dr and Ruth Solomons speak, aswell as physical therapists, Dr St Amand for thr fibromyalgia, and Dr Willems, OBGYN. Youreally learn so much and get to meet others with the same problem. Men are encouraged toattend as well. They have had to cut down on the number of seminars as budget will allow,so now there will be only one annually. I was hoping this year it would be closer (I am inMass), but it is at the end of April in North Carolina. I don't think I will be able togo, but there will be a video tape of the seminar that you will be able to purchase. Thereare also previous tapes from years gone by. That is something that you may want to lookinto. I hope that your treatments work, but it's nice to know that Dr Solomon's will bethere for you. Best of luck and stay optimistic. Keep me up to par on recovery. I ampraying for us all. Laurel
CommentI have had vulvodynia for a long time. I was extremely worried when I got pregnant.Pregnancy may cause the condition, but childbirth may take it away. Some people havereported that they have felt better afterwards, so you never know what will happen. Do notlet it discourage you. My pain went away for a few weeks after the birth of my son, sothat was encouraging. Eventually, it did return, but that was because at the time I wasnot following the diet like I should have been. But, it wasn't any worse than beforeeither. I was more afraid of intercourse than childbirth! So, go for it. Also, I appliedvitamin E (breaking open a capsule) to the vulva everyday and my doctor said that isprobably what kept me from tearing (I had one stitch). I would suggest the same. Hope thishelps. laurel
CommentHi Liz from Australia. I have some vanicream right here. The ingredients are: An oilin-water, emulsion type vanishing cream base composed of purifed water, white petrolatum,cetearyl alcohol and ceteareth-20, sorbitol solution, propylene glycol, simethicone,glyceryl monostearate, polyethylene glycol monostearate, sorbic acid and BHT. I believeyou can order their products on line. Their web address is www.psico.com and their phone #is 1800- 325-8232. Good luck girlfriend.
CommentI came across your web site accidentally and as I WAS an interstital cycstitis victimand sypmtoms are not so different I was curious to see what the differences are. My firstimpression was I did not see anyone in the guestbook talk about trying unbleached ANDorgaanic tampons/pads etc,.. The irritation I used to experience meant I could hardly walkat times --or a sudden itch in the middle of being at work or social events was anightmare AND so embarrasing. (paying the extra dollars was worth it) As for the yeast infections --- does anyone ever stay off processed sugar ? for months?your intestinal balance returns and I never had problems since. When I do go off the railsa bit with a slice of cake-- then the body can handle better and gets rid of excess sugarin 1-2 days. get into carob or candys without any sugar ONLY brown rice syrup,maple ormolases allowed moderately I could go on for hours but I think this is enough
CommentPLEASE ANSWER I am a 22 year old woman from Portugal and my problems started 6 monthago when i met my current partner. When we had our first attempt to have intercourse, Ifelt a lot of pain and a burning sensation afterwards. My previous partner where reallysmall and it worked out fine for 6 years. Could size incompatibility be the reason? Idon’t want to ruin this relationship!
CommentHi! Has anyone tried those latex free condoms? I have heard that it is possible to useoil as lubrication. Are they better than ordinary condoms?
CommentYou are a newcomer to the disease. it does sound like you could be a sufferer. I thinkthat you have an edge because you may be able to stop the V V in its tracks if you quicklyfind a doctor for it. Don't waste any time. Also rule out any type of infection, since itsounds like a relatively new relationship. try applying Estrace Cream in the area orvitamin e (pure). You will only need a small amount. look in to the Vulvar PainFoundation. They have a lot of useful information. As bad as you may feel, at least you ina time where there is a diagnosis. I have had vulvodynia for 24 years. The longer I wentwith no diagnosis the worse I got, so DO NOT DELAY. Good luck.
CommentTo Lynn: Aside from my wife taking stool softeners after giving birth, my daughtershave had problems with constipation. Laxitives give temporary relief but there are otherthings that may be of more help. Recent studies have proven that most people are somewhatdehydrated, we think we are drinking enough water but we are not. I kept after my sevenyear old to drink more water not just milk or fruit juices and she became more regular.One other bit of advice if you feel the urge to have a bowel movement do not hold off, themore we ignore our bodies urge to go to the bathroom the worse we make condition. Thesemay seem too simple to be true but it worked for my family, of course the more regular youare the smaller the bowel movement and the less painful. Best of luck and be careful withthe chemical alternatives.
CommentLaurel, Thank you so much for your enouragement. I know that it may be difficult, but Ido not want my dreams of having a child to become shattered. I really do have a gooddoctor, but it seems that I not found my level of comfort w/ any of the medications that Iam taking. I will be going back to the doctor on 4/16, and I am going to ask if I can getoff the Elavil. I won't immediately try to become pregnant, but I want to make sure thatthis medicine is out of my system before I start. I hope you and your baby remain happyand healthy. Thank you again for your kind words. More pain free days to us all!
CommentA very good idea to wean off the elavil. I found that it did not help me anyway, butothers rave over it's effectiveness. I took it for the fibromyalgia. It is not a cure all,but does block nerves from signalling pain to the brain, trying to break the cycle. Mybaby will be 5 July 4th! I will be married to his father next month in the Bahamas. Wewaited so long because the disease had such an impact on the relationship in every way. Idid not want to get married until I was well. Not there yet, but much improved. Still havebad days, but more good now, with the occasional flare-up that can last for a week or more(OUCH!). We do want another baby in the next year or so, maybe this time the delivery willcure me for good! I hope that everything works for you. Keep the faith. Laurel =)
CommentLaurel, I was only married for 3 months when I started to have these problems. Myhusband has been very supportive of this whole situation, but I know this has took a tollof him in so many ways. If I had these symtoms before I got married, I wouldn't haveeither. I love my husband too much to have put him in this situation. However, he doesseem to be dealing w/it, and he helps me in any way he can. I'm not sure if you are thesame Laurel, but I read in some of the other entry that a Laurel has seen Dr. Solomon. Ilive in Mississippi, and most of the specialist are miles away which doesn't matterbecause I love to travel, and I have good insurance. Also, congrats on your upcomingmarriage. I was married on the beach in the Virgin Islands. Also, to the person who wrote that you had to have an abortion after vulvodynia becausethe pain was so bad, my heart goes out to you, and yes that guy was a dog. Things happenin life that we have to deal with (which we are dealing with now), but keep the faith andknow that God is here for all of us. No one is perfect because if we were, God wouldn'thave anything to do:)SAC
CommentYes, the same LAUREL! Not the most common name! Dr Solomon's treats via fax and mailand is extremely good about getting in touch with you. His wife Ruth is part of his work,I believe with a PhD, but do not hold me to that. It does cost to test the urine, but hewill send you a kit and get you started. He will tell you what times in the day youroxalate levels peak and suggest a citrate regimen. It is good to try that first along withthe low oxalate diet. Are you trying that now? Then, he will send info on other treatmentsif you still have pain. Most likely the glucosamine and/or ox-absorb (which I love). Afterthat, he may ask that you try the HTO. he also sends sheets of paper that you fill out 4times a year on whether or not you are not improved, improved, significanlty improved,etc.along with your symptoms. Do you belong to the Vulvar Pain Foundation? he isaffiliated with them and you may have to join but I am not positive. They have greatnewletters and all kinds of practical measures. I look forward to reading them. I have myfiance read with me, although sometimes he is apprehensive, but it gives him points ofview on how all of us feel including our spouses. I think it gives him a new outlook whenhe gets frustrated and reminds him that we ARE doing the best we can to get better. Ireally can't say how much I appreciate him sticking around. I owe him bigtime! And I will,as I am convinced I will be much better within the next year. If you don't mind me asking,what is your age? I just turned 30. my fiance is 26. We have been together for 6 yearsthis June. I love to travel too, all the time, even though it can be uncomfortable! But, Iappreciate things so much more and do not want this condition to leave me housebound.Virgin Islands? Next on my list of places to go! Make sure you find a doc who treatsvulvar pain exclusively. And let me know how you make out. Good luck-Laurel
CommentLynn, since you have vulvar pain anyway, why don't you try the Ox-Absorb? Take up to 12per day. It is completely natural and aids in constipation. If you don't like to swallowthem, they don't taste the greatest, and you can chew them. I put them in Vanilla icecream. But still they are much better than MOM. If not, have you tried mineral oil? Notaste at all, but it is like thick water. But, trust me, it works!!!!!!!!!!!!!! Availableat the drugstore.
CommentAnother common theme seems to be that people's condition often starts when they startout with a new partner. I find this interesting. This was also the case for me, however,he was by no means large. I also feel as though triggers for me may have been the use ofcondom (despite the fact I'd used them before) and a change to a different soap. I alsoexperience fairly constant pelvic pain but this is not something I've seen discussed asyet (I haven't read all the guestbooks). It is sometimes subtle, sometimes not so much butcontstant. Do others have this problem or is there something else going on with me? For awhile I entertained thoughts that I had PID but my Dr said I didn't.
CommentI forgot to ask, how long have you had vulvar pain? Unfortunately, I have had it sinceI was a kid, but in 1992, it got so bad, I started to see why Jack Kevorkian existed! ButI am glad that I turned my life around and fought until I found a doctor who was willingto listen. As of this writing I am attempting to see Dr. Elizabeth Stewart in Boston. Ihave heard only good things. I love my OBGYN, but I feel that he is not a specialist inthe area of my pain. We'll see. And thanks for the congrats!
CommentI had a BAD rection with condoms. I was either allergic to the latex itself or thespermicide, but it was so bad that I swelled up like a balloon. And that was the end ofthose things! So, you may be on to something. It could have been a contributor. As forpenis size, I don't know if that would be the cause. In my opinion, I feel that some of usare prone to vulvar pain and it just takes a couple of things to trigger it! And a largepenis will aggravate symptoms. I believe that the condition is inherited though. My sisterand I grew up with a number of vaginal infections. Mine happened to get worse. Althoughshe had vulvar pain and her doctor cauterized the area and she did heal aftter a month orso. I thought about doing it, but declined because my condition was far worse than hers tobegin with. And I was not going to face more agony. That was 5 years ago and she is stillsymptom free. She has a thyroid. I beleive I do as well, but I am subclinical. I have allthe symptoms except hard data. I am waiting to see a specialist for that. If you arehypothyroid, it will cause vulvar pain, so read up girls. treating that can vanishsymptoms!
CommentHi Josefine, yes there are non latex condoms that are better for us and they arecalled, Avanti polyurethine condoms. They are made of polyurethine (a very strong thickplastic). It is just too great for me. I have no problems with it. The only thing that Idon't like is that they all comes with lubricant on it. It's water based (not non oxydal9) and I'm allergic to it. I wish they sold them without lubrication. But they don't. So Ihave to rinse the lubricant off Real Good so that I don't get irritated. It is also veryvery expensive! It runs about $5 just for a package of 3. You can get them at anyWalgreens, Targets, or Osco Drug store. I don't know anyone else who sells them. Check outthere web site for more info. It is www.durex.com
CommentI had wrote how I think many cases of vulvodynia are infectious. Someone asked if Iwanted to sue the men. I am angry at the male population, BUT WAY MORE ANGRY AT THEMEDICAL ESTABLISHMENT. I will tell you that every boyfriend I had after 1989 did not takethe condom off until I had a negative HIV test in front of me. At least I was worriedabout that, but I wish I had worried even more. Tell your sons and daughters that HPV(warts) are what cause 90% of cervical cancers. This cancer is basically caught bysleeping with an infected partner. This message should be told to everyone, like AIDS wasexplained to everyone. One other thing. Before my antibiotics that "cured" me, I was extemelyreactive to condoms, creams, soaps. Personally I feel it is like having a sore throat. Youcan drink orange juice everyday with no problem, but when you have a sore throat itbothers you. Stopping the orange juice will make you feel better, but getting rid of theinfection in your throat will make it possible for you to drink orange juice again. If you began this with a new sex partner, you have to consider infection. Plus, you cantransmit infection other ways than just sexually, so don't discount the idea just becauseyou developed this while you were married, or when you were a virgin. Also, to the IC sufferers. I had mild bladder and urethra discomfort, and tended to getUTI's during my battle with vulvodynia. Since the IV antibiotics, I am perfect in the UTIdepartment. No discomfort. I forgot what it was like to feel like this, it is wonderful. Ihave not had a UTI since the IV antibiotics. Hope this info helps some people. Jennifer
CommentThis is for the lady who wrote about hypothyroidism. I have never heard that it can berelated to vulvadynia, but I feel that this maybe something that will help me. Were you treated for hypothyroidism? Did it stop your vulvar pain? I am VERYinterested, as this may be a great help for me. Please post and let us all know how thisworked out for you. Thank you in advance for your help. Debbie
CommentThanks for the advice Lynn. I will try them. Even though they are expensive. Myboyfriend is always buying a condom called Exotica and I don’t know if there is somespecial lubrication but I don’t like them. What kind of problems did you have fromlatex condoms?
CommentI am so thankful to have found this site. I have not yet been diagnosed. The doctors Ihave been to do not know what is wrong with me. I have NO evidence of tearing, swelling orbumps. It all LOOKS normal they tell me. I have been treated for urinary tract infections & bacteria infections. I was toldI have beta strep, but that should not be causing my problems. I was also told that my phis too high. I just have constant burning in the vaginal area. I go to sleep with it & I wake upwith it. This has been going on for at least a year and not getting any better. Theproblem is much worse when I wear jeans..thank goodness for sweatpants ! I have triedchanging all soaps & detergents. I now use Dreft for laundry. I also was told to"line dry" my underwear. I have been given Aci-Jel, corticosteroid creams, diflucan, & metronidazol to namea few. My current GYN has me taking Claritin...like this is going to help. Does anyone know of any doctors in the Omaha, Nebraska area that are familiar withthese problems please LMK Thank YOU
CommentI spent 5 hours yesterday surfing around getting information about my problem. Whatseems to be the trigger for many women is the same for me. -Having an infection -Having anew and larger partner -Being sensitive to latex, soap etc Was it the same for you?
CommentStephanie- I believe you said that you wanted to see Dr. Elizabeth Stewart? I see hernow and I believe she is the best in Boston. I was referred informally by the ex-dean ofthe Harvard Medical School to see both Dr. Michelwitcz at Mass Gneral and Stewart. I foundDr. Michelwitcz to be very insensitive, he did not listen, and although he was supposed tobe an expert in this area, he did not seem to have any interest in the disease. Later, Ispoke with two different women who said that he had the most horrible reputation amongsufferers, and that he just rushed women into surgery. I am not trying to soil hisreputation, but I would personally stay away from him if you can. Dr. Stewart, on theother hand, is wonderful. She is up to date on every current aspect of new research andshe just keeps trying with you until something works. She can also refer you to greatphysical therapists. Good Luck!
Commenthypothyroidism is an underactive thyroid. There are doctors who believe thatfibromyalgia is actually a thyroid whose tests do not come back positive. There are 3tests for a thyroid, a T3, T4, and TSH (which is the most sensitive). If you believe thatyou may have it, ask to be tested for ALL 3. Even so, sometimes the tests show that you donot have the conditon, pay attention to the symptoms and find a doctor who will look intosubclinical hypothyroidism, preferably a naturopathic doctor who treats based upon how youfeel. if you feel that you may have the disease, I will provide the web address as soon asI can find it. It will give you all kinds of great info and also how to find a doctor inyour area. Anyway, here are some of the symptoms: fatigue, mitral valve prolapse, chronicpain in the muscles and joints,elevated cholesterol levels, hypertension, infectiousdiseases, bladder and yeast infections, frequent colds and illnesses, scaly dry skin,psoriasis, acne,eczema, lupus. Also, onset of menstruaton was very late ( I was 17),endometriosis, cysts, irregular periods, etc. but no possible cause can be found.Inablilty to become pregnant and miscarriages, arthritis, hypoglycemia, diabetes, obesity.These are more serious symptoms. Some may have a lot of the symptoms, but some may showonly few. Here are more common symptoms: chronic fatigue,migraines, anemia, can't catchbreath, slurred speech and feeling like you are in slow motion, some loss of hair (as inthe shower), fish skin on the legs, FREEZING all of the time, numbness in the arms andlegs, slow speech, slow thoughts and reflexes, always feel unrested, pressing in the necklike anxiety, anxiety and /or depression, slow pulse (under 66 beats per minute), hardtime losing weight or keeping weight off, decreased sweating, major salt (iodine)cravings,vulvar pain, genitourinary problems, intercystial cystitis, mental confusion, ringingears, loss of balance and lightheadedness, the list goes on. If you think that you may besuffering, ask first for the tests. Also, please read the book Hypothyroidism: TheUnsuspected Illness by Broda Barnes, MD and Lawrence Galton. it is amazing what otherinformation is in the book. He recommends something called the basal temp test. When wesleep at night, our body temps lower. A normal test shows 97.8 to 98.2 degrees. Shake athermometer down and take the test as soon as you wake in the morning. Have thethermometer right next to you on the nightstand so you do not have to rise. Hold thethermometer under the armpit for 10 minutes and relax and do not move. Do this for a 5-7days and take the average. A reading below 97.8 strongly suggests a low thyroid function.A reading above 98.2 suggest an overactive thyroid which requires treatment as well. A mancan take this test anytime, but a woman's temp fluctuates during her period (high) andovulation (low). A woman's temp should be tested on the 2nd and 3rd days after the flowbegins. During or after menopause, the test can be taken at any time. if this is what youthink that you may be suffering from, there is a chance that you can stop the vulvar painwith supplemental thyroid treatment. I hope this helps you Debbie. I will get that addressfor the next entry. Good luck.
Commenthypothyroidism is an underactive thyroid. There are doctors who believe thatfibromyalgia is actually a thyroid whose tests do not come back positive. There are 3tests for a thyroid, a T3, T4, and TSH (which is the most sensitive). If you believe thatyou may have it, ask to be tested for ALL 3. Even so, sometimes the tests show that you donot have the conditon, pay attention to the symptoms and find a doctor who will look intosubclinical hypothyroidism, preferably a naturopathic doctor who treats based upon how youfeel. if you feel that you may have the disease, I will provide the web address as soon asI can find it. It will give you all kinds of great info and also how to find a doctor inyour area. Anyway, here are some of the symptoms: fatigue, mitral valve prolapse, chronicpain in the muscles and joints,elevated cholesterol levels, hypertension, infectiousdiseases, bladder and yeast infections, frequent colds and illnesses, scaly dry skin,psoriasis, acne,eczema, lupus. Also, onset of menstruaton was very late ( I was 17),endometriosis, cysts, irregular periods, etc. but no possible cause can be found.Inablilty to become pregnant and miscarriages, arthritis, hypoglycemia, diabetes, obesity.These are more serious symptoms. Some may have a lot of the symptoms, but some may showonly few. Here are more common symptoms: chronic fatigue,migraines, anemia, can't catchbreath, slurred speech and feeling like you are in slow motion, some loss of hair (as inthe shower), fish skin on the legs, FREEZING all of the time, numbness in the arms andlegs, slow speech, slow thoughts and reflexes, always feel unrested, pressing in the necklike anxiety, anxiety and /or depression, slow pulse (under 66 beats per minute), hardtime losing weight or keeping weight off, decreased sweating, major salt (iodine)cravings,vulvar pain, genitourinary problems, intercystial cystitis, mental confusion, ringingears, loss of balance and lightheadedness, the list goes on. If you think that you may besuffering, ask first for the tests. Also, please read the book Hypothyroidism: TheUnsuspected Illness by Broda Barnes, MD and Lawrence Galton. it is amazing what otherinformation is in the book. He recommends something called the basal temp test. When wesleep at night, our body temps lower. A normal test shows 97.8 to 98.2 degrees. Shake athermometer down and take the test as soon as you wake in the morning. Have thethermometer right next to you on the nightstand so you do not have to rise. Hold thethermometer under the armpit for 10 minutes and relax and do not move. Do this for a 5-7days and take the average. A reading below 97.8 strongly suggests a low thyroid function.A reading above 98.2 suggest an overactive thyroid which requires treatment as well. A mancan take this test anytime, but a woman's temp fluctuates during her period (high) andovulation (low). A woman's temp should be tested on the 2nd and 3rd days after the flowbegins. During or after menopause, the test can be taken at any time. if this is what youthink that you may be suffering from, there is a chance that you can stop the vulvar painwith supplemental thyroid treatment. I hope this helps you Debbie. I will get that addressfor the next entry. Good luck.
CommentTO: Chatrine from Portugal Yes, my "vulvodynia experience" started with a severe yeast infection that mygynecologists (two of them) misdiagnosed for a year and a half. Deborah
CommentThe website for thyroid information is www.thyroid.about.com and is run by Mary Shomon.Hope this helped.
CommentLaurel, No I don't mind telling my age. I'm 27 years old, and I am new to this disease.I have only been a sufferer since September of last year (7 months), and that's why I haveno idea what could have caused this. The last time that I was @ the doctor, she gave me acopy of the low-oxalate diet along with Citracal. I am hardheaded and have not followed itcorrectly. At one time, I wanted to ban all medications/diets and whatever else becausenothing seemed to help, it only got worse. I feel so bad sometimes when I hear of peoplewho have had this problem for years like yourself. I guess I feel since I haven't sufferedfor so long that Ishouldn't complain as much. I don't have a lot of the problems a lot ofyou have. It's just that CONSTANT BURNING when I have to sit down for long periods oftime. If I stand up, it seems to go away for a little while. Sex is a problem sometimes,but as my doctor says USE PLENTY OF LUBE! I am a counselor, and I hate for my clients tosee me standing up all the time, but sometimes you gotta do what you gotta do! I have beenusing a donut cushion which helps take the pressure off the bottom. Most days it works. Iam going to try to follow the Low-Oxalate diet completely because it seems it helps somany of you. By the way, I don't think this Elavil is helping me @ all! I am not a part ofthe Vulvar Pain Foundation, but I am going to join. I have visited their website severaltimes, and I believe it will be useful. Thank you so much for you information on Dr.Solomon and all the other points that you have made. I'll keep in touch. :) sac
CommentI must wait to see the endocrinologist until September. Last night I spent 2 hourswriting to him (more like begging) in hopes that he may be able to see me before then. Butthis guy is supposed to be excellent. He sits down with you and goes through the symptomsrather than letting test results decide. Not too many docs want to use that approachwithout hard data. There should be more people like him in practice. His name is Dr.Kenneth Blanchard in Boston. I will let you know how it goes. Keep me in the prayers andhope that I can get in before then! Thanks.
CommentFor Kim -- I wonder how many of us have beta strep and if it could possibly be afactor. I do, but most doctors don't even test for it unless the patient is pregnant,because it's believed to be asymptomatic. I was told I have a heavy infection, but that itwouldn't be the thing causing pain. Can't help but wonder ---
CommentI just found a site that everyone may be interested in...I don't know how many of youhave seen this...Sorry if it has already been posted. http://www.primenet.com/~camilla/vulvodyn.htm This site suggest that some patients were infected with group B strep & alsoalterations in vaginal pH. Both of which I am told I have. I also have a question for everyone...Does anyone else feel tired all the time?? Also...How do any of you hold down a fulltime job. I have a job where I sit allday...With the constant burning that I feel this is very frustrating. I would like to note that one good thing...I was recently approved for FMLA, whichmeans when I am having a VERY bad day, I can leave work to come home to sleep. This is theonly relief I get...is to sleep.
CommentKim, Do you take any vitamins? I use to feel tired w/ this all day too before I startedtaking a ONE A DAY vitamin. I am a counselor,and I sit down for about 5 or 6 hours a day.I have been using a donut cushion (that I was told was made for women who have babies andhave episiotomies). It has helped me a bunch. It really takes a lot of the burningsensation away from my bottom. Hope this helps you. Also, someone mentioned in one of theprevious entries Vanicream which I have just started using. It is natural (I think). Youcan get it from the pharmacy @ Wal-Mart. It isn't prescribed, they just keep it behind thepharmacy counter. Try that and the donut and let me know how it worked out :) SAC
CommentI think that you are fortunate that the pain is relatively new (well, as fortunate asyou can be with this!), so I think that you have a good chance of recovery if you followthat diet. I cannot stress that enough. It takes time, but you can do it. If there aresome foods that you like, some can be substituted. Did I ask if you had a copy of the lowoxalate cookbook? While others can have foods from the low group, I find some irritating.Some can even have them in the medium group if they are in small amounts. You HAVE TO testeach food individually so you know what causes discomfort. I can eat meat and chicken forthe most part with no ill effects. But there are days that I am starving and eat them inlarge amounts, and for some reason I have pain. Organic meats are pretty easy to find. Theanimals have not been given any antibiotics, which is a trigger. Try those. I can't eatpork or bacon, ham. I don't know why, but I always have a flare up, could be the sodium?But I can live without those. You have to make sacrifices. Please do not eat chocolate,peanuts, cranberries, tomatoes, cinnamon. Those are some of the worst things that you canhave. Keep the bladder full with water. Especially during the 2-4 hours after a meal whenthe pain can be the strongest. Try the citracal and keep up with it to see if that helps.Stand as much as you can. You are the most important thing. Is your pain on one or bothsides? Mine used to be on both, but is now on the left side. I have a manual transmissionin my car and that is a trigger as well. If you don't have a heating pad, get one. It canstop pain in it's tracks and feels like heaven. Get a cushiony chair at work. If you arehidden behind a desk, try to conceal a heating pad if you have a private office, or keepone there in the event of a flare up. I think that your sitting is contributing to theproblem. I had to sit all day at work and had to leave finally in January. You mentionedthat you were tired? That could be a symptom of fibromyalgia. Are you familiar with thatillness? I was diagnosed in January. If you give me a list of foods that you are not sureif they are irritants, I can tell you what my experience with them has been. Have youalways been a counselor or is the sitting relatively new? Also, Did you find that you hadsome kind of lifestyle change in September or stress (can be a factor)? Sometimes even achange in diet can bring on vulvar pain, especially if you turn to a lot of vegetables andgreens. If you ever need to ask me anything, I can help you as best as I can. I know thatI am not a physician, but I have a pretty good idea of my condition because it has been solong. The only thing I am angry at is the fact that they did not know what this was when Igot it and I got progressively worse when I could have gotten better. But I have improvedto about 60% if I had to guess. I am improving everyday. My email isloosiemagoosie@aol.com if you ever feel like you need moral support. I am thankful forthis computer, a gift from my parents last month for my 30th. So, I am new to thiswebsite, and I find great comfort in knowing that you are all out there. One more thing,were you administered any antibiotics around the onset of pain? That's where my problemsbegan. Best of luck Stephanie. You WILL get better with time. Laurel
CommentAs I mentioned to Stephanie above, have you been tested for fibromyalgia? Vulvar painis a symptom of it. Fatigue could also signal a thyroid problem. Have you mentioned it toyour doctor? Make sure that you bring that up when you go for your check-up. Do checkthose out. Barnes and Noble has some great books on those conditions and they may be agreat help to you. laurel
CommentI am a 27 year old female with vulvodynia. I have had this disease now for 3 years andcounting. My problem started after switching birth control pills. I ended up having ayeast and bacterial infection. The antibiotic used to treat the bacteria apparently causedmore yeast growth. At the time both medicines seemed to be working but one week aftercompleting them, I was hurting. My ob-gyn informed me that I still had a yeast infection,and to use over the counter treatment. Well, you guessed it! I was still hurting. Now I'minformed I have a bacterial infection. I was given some oral antiobiotics and I am fineinternally, but I was uncomfortable externally. I was wondering if most women experienceburning, or some other symptoms as well? I rarely burn and when I do, I can definitelytell it is external, not inside. I probably only experience 2-3 days a year feeling great.I have some sort of "feeling" EVERY day. I can't say it's painful, but I'm awareof it. My doctor wrote a precription for Elavil at 10mg. I was told within 3-4 weeks Ishould notice an improvement if it was going to work. Well, I didn't. I continued takingit for 2 months before I gave up. Now my doctor is telling me that usually the dosage isto be increased. (Why then was a prescription written for 10 mg for 1 year?!!) I was alsotold that it probably didn't work because it was a starting dose. She also informed methat if this seems to help, I can take this for a year and then wean off of it and then Imay be "cured." After reading stories in here, I get the impression this isnever going away. Ever since this has occured, I can still engage with intercourse with myhusband, but most of the time I feel real sore and achey afterwards. My doctor says thatit's caused by the nerve endings. Also, 99.9% of the time, I hurt for the first 5-10seconds at the beginning of penetration, then I'm fine and at the end, I immediately feelsore. Am I just weird? Anyone with suggestions or answers would be greatly appreciated.Hang in there everyone. Take care. Amber
CommentHi Josephine, Yes latex condoms and all spermides and lubrications all have given meyeast infections and have always irritated and burned my skin. I didn't realize that until5 years later. I can only use polyurithene condoms. I know they're very expensive but Iguess we don't have much of a choice.
CommentI would not say that you are crazy. Many of us have had bad experiences withantibiotics and various infections. Yeast was never a major problem for me although I didhave a few in my day. But in 1991, I had a bad infection (bacterial) and was too afraid togo to the doctor. I was 20 years old and thought that by letting it go it would go away byitself. I know, not too smart but I was young! Well, I waited at least 5 or 6 months to goto be treated and I was prescribed Flagyll. My boyfriend was too, to avoid reinfection. Ifelt great for 2 weeks, but one morning I woke up and it burned so badly when I went tothe bathroom. So, I went back to the gyn and he prescribed another treatment of Flagyll,assuming that the infection required another dose. I am sure that I could have told him to(do not remember) since the symptoms were the same. Even on the 2nd dose, the damage hadbeen done. I never recovered. I notice a lot of women here who have taken that drug. ForGod sakes, it could grow hair on your chest! I cannot begin to say how damagingantibiotics are. When my family gets sick, I literally separate myself from them for fearI will have to take them. But, I can say that I have read in my newsletters that manywomen who consider themselves recovered still feel something there like you, so there isprobably a good chance that will be with you always, even if the pain is gone. Good luck.
CommentI've been reading some of the recent postings and wanted to share a little bit and aska few questions. Please email me if you have information you think I'd be interested in. I've had Vulvodynia since 1986. I KNOW A LOONNNNGGGG time!!! (Doesn't it just suck tobe us?!) I've had "good spells" and "bad spells". I'm currently 1 1/2years into a bad spell, but I think I'm improving slowly. I've seen some posts mentioning Dr. Reid, formerly in the Detroit, Michigan area untilhe lost his license (correct me if I'm wrong on that) and is now practicing in Australia.I did see him and had 4 surgeries with him. I am not sorry I had those operations. At thetime, I had intense throbbing pain that was not relieved by anything. That throbbing painis gone from my life. I know that many women complained that Dr. Reid did inappropriatethings. However, I did not experience that. He did do odd things that I think set him upfor trouble. For instance, he rarely got a nurse in the room while he did the exam and heexamined the Barth. (sp?) glands by having you stand up on one leg while he probbed around(sorry if that offends anyone). He struck me more as a mad scientist. The wait in hisoffice was horrible---6 hours usually. After I saw Dr. Reid (early 90's), I saw Dr. Sobel for yeast. He prescribed the boricacid suppositories---which eventually did help--but they burned horribly. My parents wereinto Shaklee vitamins at that time and I started on EPA (fish oil) capsules. I tookmega-doses (like 6 of them a day) daily for quite awhile (months) and really felt thatthey finished "curing" me. From that point until February 1999, I felt prettydecent. I sometimes had some itching, but nothing too bad. I've always been prone to yeastinfections. I also typically "run to the dr." anytime I get a sore throat, so Iget in a rut of being on an antibiotic, then getting a yeast infection, then sometimesgetting a vaginal bacterial infection which ALWAYS brings on another yeast infection. In Feb. 1999 I had a bout with my skin and was "bounced" around from yeastmedication to antibiotic cream. It took me about 6 weeks to finally "heal up" onmy own from it. I never found out the cause. Then, in September 1999, the same thinghappened. It got progressively worse as my local dr's put me on various creams &medications (Diflucan, antibiotics, Estrace, Steriods---I've lost track). I was referredto the Vulvar Pain Clinic at U of Mich. in Ann Arbor. It took 6 months to get an appt. I've been going to U of M since April 2000. First they put me on Elavil and stopped allcreams. The drs. there feel strongly that many dr's put us on antibiotics too easily. Whenthose dr's find out we're prone to yeast infections, they give us a prescription for anantifungal (Diflucan) at the same time. We shouldn't be pre-treating a yeast infectionthat hasn't happened. All this antibiotic/anti-fungal medication really messes up ourvaginal flora. So anyway, they basically put me on Elavil. I thought I was progressivelygetting better. However, when I went back in 2 weeks ago, they felt I wasn't making enoughimprovement and switched me to Neurontin. The Neurontin has made me sick to my stomach allweek, so now I'm off that and they're discussing a new game plan. I don't want to go backon the Elavil. Now that I'm off, I really realize that the Elavil made me really groggyand my thinking was slower, etc. For the past 2 weeks I've been reading everything I can get my hands on about healthyeating, etc. Here's what I want to know: Do any of you eat REALLY healthy. By REALLYhealthy, I mean, no processed foods, no fast foods, little or red meat, lots of fruits andveggies and quality fats, such as flaxseed oil, walnuts & almonds. I'm wondering ifadopting this ultra-healthy way of eating, increasing Omega-3 oils (like the Shakleevitamins I used to take), and possibly taking other supplements might help. Fromeverything I'm reading, it seems that the American way of eating contributes toinflammatory and immune system diseases. What I want to know is there someone out there who eats in the Ultra healthy way I justdescribed AND avoids the frequent use of prescription medication (antibiotics & yeastmeds) AND STILL has vulvodynia?? My latest thinking is that maybe my body just needs to heal itself. Maybe I just needto give it every opportunity to do this. I also look at the statistic that says that therewere no reported cases of vulvodynia prior to 200 years ago. And I ask myself is thereason for this because our eating patterns have changed so drastically? Or is the reasonthat a woman of that time wouldn't speak of such a personal thing? I'm not saying to ditch all the medical treatments out there. I'm just frustratedbecause I feel that I've tried a lot of different things. I don't appreciate taking drugsthat "mess" with your brain, like Elavil & Neurontin (I know they do havebenefits). I'm also not seeing ANYTHING that's giving clear good results. It seems likeEVERY doctor out there is proclaiming a 60-80% improvement/cure rate. Either we"vulvodyinians" are growing at an alarming rate, or those statistics aren'tcompletely accurate. There sure seem like an awful lot of us out there. Here's something else. I've read that 15% of women have vulvodynia. What percentage ofwomen get cancer, does anyone know? 15% seems like an awful lot of women. Sure, cancer isawful and it does hurt and kill. However, I'm not sure vulvodynia isn't just as bad in itsown right. If you're in pain most of the time, feel like a failure to your husband andchildren because you can't do what you want/need to do for them, and the disease DOESN'Tkill you, why is that better? Despite how this sounds, I'm not a depressed person. Justmerely stating the obvious. Why aren't we calling 20/20, Dateline, and Barbara Walters? Why don't we have littlecute ribbons to wear creating "vulva" awareness? If women aren't afraid to standup and admit they've lost a breast to breast cancer than we shouldn't be afraid orembarressed that we have vulvar pain. I didn't ask for this. I am 34 years old. I was raised a "good little Catholicgirl" and didn't have sex until I married my husband (it's been a painful journeyever since that 1st time). I've never done drugs, I rarely drink and I live a relativelyhappy, stressfree life. I didn't ask for this and I don't deserve it (and neither do anyof you). WELL, this has turned out way too long and I apologize. I hope you skipped rightthrough it if you got bored! Now, I'm getting off my soapbox..... -Cheryl
CommentKim, Your message caught my eye when you mentioned needing information about doctors in theOmaha area. I live a couple of hours from Omaha and for the past year I have been to twodifferent OB/GYN's in Omaha. I was diagnosed with vv last year, but I know that I havesuffered with it much longer. Both doctors put me on numerous creams and basically refusedto do anymore and my last doctor basically "dropped" me as his patient. I wouldcall him and tell him that I was still experiencing burning and itching and he would tellme to try another month or two of the creams. I recently joined the national vulvodyniaassociation (www.nva.org) and their was no one in their database of doctors who treatvestibulitis or vulvodynia in the state of Nebraska. They referred my to a doctor at theUniversity of Iowa (that is the closest) and I have an appt with him at the end of May. Mypersonal opinion is that you need to see someone who specializes in vulvar conditions.Don't waste time like I have by assuming that doctors always know what's right. If youwould like any additional information or would like to talk. PLEASE email me!!! Take care!Melissa
CommentI was very interested in the message about hypothyroidism. I was diagnosed with it in1993 and I have been on medication ever since. For those of you who are wanting to learnmore about it, it is a hereditary condition. Your chances of having it are very high if aparent or grandparent has it. I have most of the symptoms that were listed, but I did notknow that it could cause vulvar pain. All of the doctors that I have seen about my yeastinfections, bladder infections and,vv knew about my throid condition, but no one evermentioned a possible connection. The thing that really puzzles me though after reading thenumberous messages about thyroid conditions, is that I am on medication. It is regulatedand I have the yearly test done to determine if my dose needs to change. However, my vvcondition has not seemed to improve this year since my dose was increased. Are they anyother women out there who have hypothyroidism and think that their medication helps? Ialso want to say how wonderful this site is and how helpful it has been. For those of youwho suffer from bladder infections: I recently saw a urologist and he said that my urethrais inflammed. The symptoms are the same as a bladder infection, but when a ua is run, theculture count is lower than an actual bladder infection count. Is there anyone else whohas been treated with this and did antibiotics help. I am very skeptical. Thanks!
CommentHi everyone... I have posted here before, but just wanted to share the latest with you.I was seeing a Dr. who prescribed antibiotics for me, and I was getting much better. Mypain was gone and I felt like a new person. However, I started to have intercourse againand after several times my symptoms returned. I was totally frustrated. After readingJennifer's post about Dr. Attilla Toth in NY, I became convinced that I should go to seehim. He is basically a fertility specialist, but is also an infectious disease specialistand he told me that this is caused by a bacterial infection. Not only that, but you andyour partner have to be treated. It makes total sense if you think about it; why would mennot pick this up as well if we have it and we are still having intercourse? The otherissue is that they could have been the source of this infection; since men rarely show anysymptoms of this. You should definitely check out his website, it iswww.fertilitysolution.com. I think you will find it very interesting. My husband and Iwent to see him this past Wednesday. He took a sample from both of us; now we have to wait3 weeks for him to culture it and find out exactly what bacteria we have. Then he willtreat us both with antibiotics, but in an IV. The reason that this bacteria doesn't showup when you get tested in other Doctor's offices is that it sits around for hours waitingto go to a lab, and the bacteria that causes this is anaerobic. The treatment is anantibiotic IV. This is a stubborn bacteria that requires a strong antibiotic for the rightlength of time to get rid of it. I know that many of you don't feel that antibiotics arethe answer for this, but I am only sharing what I have found out and I have to say thatthis makes sense. If you read the information on the website it makes sense. Why would wesuddenly get this condition out of the blue, and why would it persist for so long? Thebacteria gets in your system, and then it builds up until your immune system starts to gointo battle with it. That is when the symptoms start to show up. He said the symptoms areyour body's immune system reacting to this. There may be other causes of this, but I amconvinced that this is the cause of mine. Good luck to you all, and don't give up!!
CommentI found this website probably a year ago or so but haven't been back until now. Here ismy story: I avoid doctors. I am convinced that they need so much help from the patient todiagnose anything, that I might as well just diagnose myself. Only thing is, I can'tprescribe myself meds. Oh well. I am certain that I suffer from vulvodynia off and on. HowI enjoy the off times! When I am having a flare-up I have red inflamed tissue withtearing. Urination is somewhat uncomfortable. Sex leaves me with a burning, raw feelingand extreme redness. It seems, however unlikely, that my worse bouts are in the springwhen my sinus allergies are acting up also. Don't know if there is a connection or not.Also, when I am under severe stress it causes flare ups. Of course, then when it flares upI am so uncomfortable that I am under severe stress. No wonder I can't win. Also, I wonderif having too much sugar in my diet plays a part? I have read about some people that triedthe low-oxalate diet and then found out that they actually had allergies to the foods thatthey were eating on the diet. So I haven't tried that. Sometimes I think that maybe Iovertreat the area with ointments--things I've tried: triple antibiotic, aloe, a&dointment, gold bond cream, cortizone-10, even witch hazel. I've used yeast infectioncreams but don't have the discharge so am pretty sure that isn't it (plus if you read onsome of them it can cause irritation...like I need more of that??) Keep it moist? Dry itup? All I know is that when the "cuts" are there, I am desperate to have themheal up. I soak in the tub a lot. Makes it feel better but who knows, it might be doingmore harm than good. It seems also to somewhat lesson during my period. It is a terrible,lonely, embarrassing problem to have. Not like you can let anyone know why you are soirritable. All through the day, you think about it. Hoping and praying that the next timeyou urinate it won't hurt & you'll know you are healing. I forget how wonderful I feelwhen I feel good until I feel like I am feeling now. I also have bouts of irritable bowelsyndrome and not wanting to be too gross, but when I am in the constipation mode,sometimes I think the bearing down helps contribute to the tearing. Well, how nice to getthat off my chest. Feels better to let it out in hopes someone can sympathize with me. Iam under a lot of stress right now. My father has cancer and severe heart problems andtrying to "de-stress" is all but impossible. 2 weeks from now my husband and Iare going away for a couple days for our anniversary. I really have been looking forwardto it. I swear, the day I made the reservations a flare-up started. All I can say is IPRAY that by then it is over. What a strain--physically and emotionally. My husband isgreat but that doesn't stop ME from HATING myself and feeling like a freak. Last year Ididn't hardly suffer at all. Which makes me think that there are definitely triggers. If Ionly could figure out the answer. Well, good luck to everyone. Sorry this was so long!
CommentSomeone made a comment for me which I really appreciate. Thanks for taking time to dothat. I just want to say though that I really have never been in pain. This"feeling" I have is the same intense feeling I have had these past 3 years. Doyou still think it will always remain the same? I just want some relief so bad. Thanks forlistening and sharing.
CommentI've posted many times but thought I would summarize for those new to the site. My wifeand I have been married since 1983. She has had three vaginal deliveries. We have had avery active sex life with no problems aside from repeated yeast infections. She stoppedbirth control about 2 years ago and about 1 year later started having tears near herepisiotomy site. They heal and then re-tear. Nothing has helped, all the creams, surgeryto form a new scar, etc. She has even had clitoral tears, without any know cause. I'mafraid to even touch her sometimes. I don't expect a cure but I am very disappointed inthe Medical Community for not really doing more reasearch. There is a lot ofmisinformation and ignorance out there. My best to you all and try not to give up.
CommentFor Amber: Like you, first it hurts, then it is okay (numb??) and thenafterward..YOW!!!! Straight to the bathtub for a long soak :-)
CommentFor Amber: I'm not sure if this can be of any help to you or not, but I guess it wouldn't hurt tocontribute something I discovered. It has now been a year since I managed to get rid of ahorrible yeast infection that lasted for six months, no doctors or prescriptions did meany good and finally I turned to some natural remedies that managed to clear it up. I'vebeen fine ever since and even gotten rid of most of my urinary problems (wich I've hadefor years and years) by eating zinc and copper supplements. However, an unpleasantreminder of the yeast since then has been a feeling of being constantly irritated"down there", not much but it's been worse if I have had to sit down all day.What to do? I'm positive no doctor would be able to help this time either. Now it seemsthat I've discovered that most of my discomfort comes from developing some kind of contactallergy for the toilet paper at work. Having that paper touching me too much leaves afeeling that I have a big rash there, but noting is to be seen. Two weeks ago I startedbringing my own paper to work (switched to a new brand at home too) and I feel a whole lotbetter. Just a litte itch some times, no irritation or feeling like I have some kind offever there like before. Also eating omega-3 has been wonderful. Most of the time now Ifeel normal and non-irritated (never had any pain with sex). I hope this helps someone.
CommentHi ya'll, Been a while since I've checked the site. I had a few flare ups, but now I'vebeen pretty much pain free for a month. I came upon a website by accident. I've been sickall winter with viruses and sinus infections and if that wasn't enough every time I gotsick I would break out with what the dr's 1st thought were fire ant bites, then the 2ndtime flea bites. I finally figured out that what ever it was (some kind of hives) happenedeither right before I was sick or towards the end when I was getting better or in themiddle. They looked similar to chicken pox or shingles, but no one was able to tell mewhat they were. Now you all are asking what this has to do with vestibulitis. Well ofcourse things there flared up from the course of antibiotics and of course I got a yeastinfection each time I was on meds. While checking the web for different types of rashesand hives I came upon a site for sensitive skin products. The sitecountryessencecanada.com. They make handmade soaps out of all natural ingrediants, such asgoats milk, oatmeal, olive oil and others. Thy also have a foaming milk bath, a bath oiland massage oil. I've tryed the milk bath once (I only ordered one packet), when I used itI had almost immediate relief. I have ordered more. I also am using there sea salt bathsalts to soak in combined with there bath oil 2 to 3 times a week. I am also applying themassage oil to my vulva once to twice daily. What a difference. My pain is all but gone. Inotice some dryness once in awhile that seems to cause some uncomfortableness, but I justapply some of the massage oil. I haven't felt this good in years. Hope it continues. Justwanted to share this site with ya'll, you might want to check it out. Here's to pain freedays to us all. Chris
CommentBecky -- please keep us updated on the results of your cultures with Dr. Toth. I, too,think this makes sense for my condition, but Jennifer's posts have always given me theimpression that, while Toth's IV treatments work in the short term, things seem to comeback for her. I'm on the other side of the country and can't see Toth myself and wonderhow I could get a doctor here to do the same sort of culture.
CommentJust a bit of info to those allergic to shellfish. My wife had a very bad skin rash twoyears ago, turned out she was allergic to shellfish and mushrooms. I take glucosaminesupplement everyday and suggested she do the same. Well guess what it is made from? Crabshells!!!! If you have a food allergy and take supplements find out what they are madefrom.Bye.
CommentDear all, the hpv link sounds interesting, although this wasn't the case with me. my v.v. starteda few months after i started on the pill, but my suspicion is that the pill made me moreliable to get thrush, and this brought v v on, rather than the pill itself. i waswondering if anyone thought there was a connection with water? for me the problem seems tobe less in soft water areas, don't know if this is just coincidence. re. babies, theredoesn't seem to have been much of a response, i'd also be very interested to hear fromwomen who've gone through pregnancy. my specialist says a few of her patients have, andthey've been fine (not sure if the condition improved or not.) - also, any positivefeedback on acupuncture/ alt med? 3 month period result did not sound very encouraging! good luck , vanessa
CommentJust to be clear, I believe my IV antibiotic treatment is successful. It has now been10 months since my IV with Dr. Toth and I still have no daily pain, the redness at theopening of my vagina is gone, my discharge seems normal, and I do not have a bad odor. Ido still use some lubrication when I have sex, and can have slight discomfort during myperiod (which I can avoid if I use tampons). I consider that success. I endured over eightyears of vestibulitis, I think it would be unrealistic to think I am going to be like Iwas when I was sixteen. My tissue biopsy during my illness showed sclerotic tissue, whichis how I had described the feeling...inflammed and less elastic...like the tissue couldsplit right open. The lab said I could have the beginnings of Lichens schlerosis. I neverthought that I would be able to reverse that damage, BUT THE I.V. DID!!! I have not hadanother biopsy, but I no longer feel that the tissue is stiff. I am not sure why people have misinterpreted what I have written previously, exceptthat I do try to tell all the ups and downs, and that I am not what I would consider 100%but I am about 95%. Also, remember I had surgery that once they got inside proved that Ihad adhesions do to a long standing infection. This after every culture done by the 20GYN's I had seen over the years said the cultures all came back normal flora. I had oneGYN who at least agreed that he sometimes sees green horrible discharge coming out ofwomen, and it comes back normal flora. He was a gift in so far that when I told him aboutToth's work, he encouraged my to do the treatment. It was very difficult for me to do theI.V. psychologically, because all of the "vulvodynia doctors" don't buy into theinfectious theory. My GYN at the time encouraged me to follow my gut feeling, the feelingI had from the day I started experiencing that awful pain. I'll say again that I do not think that all vulva pain is infectious, but I think thatprobably a lot of cases are.
CommentJennifer -- thanks for the clarification. Did Dr. Toth ever put a name to theinfectious agent he treated you for? Did your cultures with him also come back clean?
CommentDo other allergy sufferers out there notice that when your allergies are bad (pollen,ragweed) that your vulva hurts more? When I am inflammed with sinus problems my vulva justkills even when I am not peeing! I feel like I am having such a setback after improving somuch. I think it is related. tons of water isn't even helping today!
CommentTo the person who asked about the allergy connection---I have terrible allergies topollen, but my bad season hasn't happened yet so I don't know if I will feel worse since Iam a novice with this condition. I did tell Dr. Stewart, in boston, that I suffer fromallergies since I read in the NVA newsletter that some doctors were prescribinganti-histamine creams for their patients since cells in that area, when aggravated,release histamines into the tissue. Therefore, Stewart put me on CROMOLYN CREAM 4% and Ithink it is helping some, although I just started. We have it compounded in a neutral basesince I am too sensitive to the chemicals found in most creams. Ask your doctor about thecream, and maybe he/she will allow you to just try it out. I think that my VV beganbecause I was actually allergic to the yeast in the yeast infection (I had never had hadone before) and my body over-reacted and caused this bloody inflammation! Hope this helps!I am sending POSITIVE ENERGY out to everyone! We will have more pain free days, and wewill get better. Then we can all march down to Washington and force those twits to givemore funding and more awareness to this horribly lonely and painful disease. We need toget angry and we need to unite! No more suffering in our concealed rooms!
CommentLaurel, I am one of probably a few people who does not have a computer @ home, so Ijust use the internet @ work and my computer is not set up for e-mail yet(we're working onit)! I am going to register w/ the Vulvar Pain Foundation so that I can get theLow-Oxalate Cookbook. I have a diet to follow that my doctor gave me. My pain is on bothsides. I'm now noticing that after sex, my vulva seems to be swollen. This disease is sostrange. I have had 4 "good"days and today, I can feel the burning coming on.Yes, I know that most of my pain is caused from sitting too long. I started working as acounselor in August. I guess that was a lifestyle change. I got my master's degree incounseling in May of last year, and I started my full-time position in August. I love whatI do, and I couldn't imagine it causing stress. Although when I first got married, myhusband and I had a lot of problems from both of our families. I saw in the diet that alot of the vegetables that I eat were medium to high in j oxylates. Do you think that adiet pill could have contributed to this? I was taking Adipex right before this. Also, Ihave had bouts with yeasts all my life and mostly have been using Diflucan. Come to thinkof it, January 1999, I had a bad reaction so the doctor said to Monistat. I had to go tothe ER because it hurt to bad. I was told then that I should use Diflucan from now on. Iam not familiar w/ fibromyalgia. I had never heard of it until this site. I use to betired before I started taking vitamins everday. I was telling someone that they may wantto take a vitamin everyday to help from being so tired. Well, let me go for now. I will begoing back to my doctor on the 16th. I will let you know what happens.
CommentThe cultures are a little confusing. Unfortunately, there is not a cut and dry answer.Toth was very unhappy with what grew in my cultures (and my husbands for that matter).After doing this last IV of meds, I went back for follow up cultures. He still does notlike what he sees in terms of fertility, but feels that we must have gotten the damn bugthat was causing my vulvodynia. Toth agrees that it is possible even he has not isolatedexactly what caused my pain. What he hopes is that since my body seems unreactive to themix of flora that is there now, that I will be able to get pregnant and carry a baby.Remember, he is a fertility doctor, I sought him out becuase I thought he would help meget antibiotics that I thought I needed for my vulvodynia, and I had miscarried numeroustimes. He agreed that probably all of my problems were connected. What I like about him isthat he is one of the first doctors that trully was a partner with me in fighting myvulvodynia. See, from the cultures he wanted to give me mefoxin, but what I knew was thatI feel better on Augmentin (an oral antibiotic) so, I took 6 days of Mefoxin, and 6 daysof Unasyn (the IV form of Augmentin) He dreaded giving me the Unasyn because it is one ofthe antibiotics that allows yeast to grow like crazy, and unfortunatley he had found somemoderate yeast growth already in my cultures, but he agreed it was worth a shot. The daysfollowing the IV were confusing because the yeast had gone wild. He put me on Sporonox fora week. In about a months time I could see that I was feeling much better. It has beenalmost 10 months now since my IV, and as I stated before I feel very well. I thought I should mention that I have started IVF to try to have a baby. I have beentaking Lupron shots for over two weeks now. This drug shuts off the pitutary gland so thatyou stop cycling. It is a forced menopause. I feel just fine, no vulva pain. This makes mewonder about the Estrogen connection that doctors try to sell? I mean, I believe thathormones affect our libido and lubrication, but to be sitting around all day in pain??? Iquestion that.
CommentI find it plausible that hormones are a factor for me. Dr. Davis in Arizona found thatmy skin in the vulvar area was extremely thin. This puts the nerve endings right on thesurface to be irritated by any and everything. The thinness in my case was lack ofestrogen. I am not, I should add, menopausal, but I do run.
CommentDo you still cycle regularly? Don't you find it odd that many of the women who have vulvodynia are young women, thathave no other indicators that their estrogen is low? I was told my "skin" wasthin down there was thin too. I was also told by tons of doc's that my vulva looked justfine. I was also told that I smell fine, and that I am just 'so upset about everythingthat I think everything is wrong' I also had a counsler tell me that I probably feelguilty about sex, because I had a close relationship with my father (no that is sick). Iwas also told that I must be hacing herpetic outbreaks, or herpetic neuralgia, I was alsotold that I have HPV. Well, I finally enlisted my husband in looking at vulva, so I had another witness. Imade him take poloroids of my vulva, so that when I took the antibiotics that worked Iwould have proof that my vulva went from red to pink. Like I said, it is possible that your problem is estrogen, but don't rely on what thedoc's say. Look at your vulva yourself. If you happen to take an antibiotic for somethingelse, pay attention to whether it helps your vulva. If rinsing your vulva with water (that was a godsend for me) makes you feel better, Ithink we have to reason that you are washing away the immunolgical stuff that isirritating your vulva, that is dripping out of your vagina. I don't think that an estrogenfluctuation would be likely in that case. I do know vulvodynia sufferers that get norelief from bathing or rinsing with water, so I tend to think they do not fit into mypartiular hypothesis. Just giving more info, I am not trying to be argumentative. There is not a perfectanswer for vulvodynia, but I think many rememdies just act as a bandaid making one feelbetter, but not treating the main cause. Cortizone is going to help because it reducesinflammation, but it does not treat what is causing the inflammation. Maybe oxalates makeour urine more aggravating to our vulvas, but I doubt that it is the cause. I don't know, I am not a medical professional, and I do not claim to have all of theanswers, but I don't understand why some women follow their doctors blindly whenobviouslythe medical establishment does not have the answers to this one either. Follow your gut. I don't care if you agree with me or not, I would always encourage youto follow what you think is right. and don't do any procedure or take any meds that youfeel are not right, or have a possibility of horrible lasting side effects.
CommentJennifer -- I did have other indications of low estrogen. My periods are slight andsometimes not at all. I did a hormonal work-up that confirmed low estrogen (and in factlow hormones across the board.) My pain level fluctuates so dramatically, I think there'sa hormonal component to that as well. But I don't think that hormones are the completeproblem. I yo-yo from one kind of infection to another -- strep, or yeast, or anovergrowth of lactibacillus, or something else entirely.
CommentHello to everybody, I've been reading these entries off and on and really, reallyappreciate the dialogue between everyone- we may not agree with each theory presented, andsymptoms vary wildly from woman to woman BUT it feels so good just to be able to ventabout what feels like an "invisible" and isolating condition. Sharing whattreatments we've tried and sharing our medical histories is a vulnerable step but I knowI've benefitted from the entries so I thought I'd quickly share mine in case it is usefulto others (and obviously therapeutic for me, pardon the indulgence and skip it if itoffends). Here goes- painful bladder infections in childhood; came down with some form ofglandular fever/mono around the age of 8, took a long time to "recover", neverwas the same after in terms of energy, stamina, etc. Had a cystoscopy, appendix removaland a tail bone injury @ 11 yrs age and probably started to tense/contract the pelvicregion unconciously to "guard" the area after all the pain. When mensruationstarted found tampons very diffecult and painful to put in. Got sick, diagnosedw/CFS/Fibromyalgia at 15. By 17 was doing ok. Got married at 20, honeymoon a disaster-massive inflammation and pain. Saw GP, diagnosed w/ V V and vaginismus, given cortisonecream I think to reduce inflammation, stopped all bubble baths, etc and started ondilators. Also treated for yeast infection. Didn't get far on my own, dr. referred me tovulvar pain specialist gyn. in my city who emphasized avoidance of chemicals, perinealmassage, estrogen cream, dilator work, etc. She was very helpful in educating me on whatphysically is happening, the pain cycle , etc which I found a relief after so much fear& ignorance which makes it harder to bear. She later referred me to a physiotherapistwho specialises in pelvic dysfunction and started doing biofeedback and external andinternal trigger point work (I got a motherload of spasms). She is wonderful and I am sograteful for her. Until I saw her my pelvic muscles were in constant contraction and Ithought it was normal! I recently partcipated in a study/trial of the Cromyln ointment butI suspect I got the placebo (no effect). To date, I struggle to do my physical exercisesand relaxation at home which help the muscle side of things IF I keep it up- I work 2 jobsand am getting recurrence of CFS/Fibromyalgia symptoms. I still get shooting pains intissue and flare ups of inflammation. I try to rinse with water/wear loose clothing but isnot always possible. Will be trying low oxalate diet and calcium citrate soon. I gothrough bouts of depression but choose to remain fiercely hopeful with God's help. It'sbeen about four years since the diagnosis and my husband has stuck with me, so for all youout there nervous about relationships, hang in there be up front and don't tolerate crapfrom guys whose love is conditional on intercourse when you can't provide it. There's moreI could say but I know I've taken my share of the space and there are others who need tohave their say. To Dove Helena's recent entry I say I agree! We DO need to unite and getmore visible as hard as that is considering the nature of the disease. And not justpressuring Washington- think international, I live in Canada and want to see things change(more tangible support, more funded research etc) for women EVERYWHERE with this disease.So lets get something started- I'm so ready for suggestions,etc. More pain free days toyou all and God bless.
Commentmy computer crashed and I have been out of the loop for a few days, but today I amwriting from mom's until I get mine back next week. I have missed reading everyone'sexcerpts and helpful information. Just in my opinion, someone asked why there had been nocases of vv until 200 years ago. Well, besides the records factor, I am convinced that ourenvironment has everything to do with the way that we feel. I think that we don't realizehow many chemicals we come into contact with on a daily basis. Personally, I cannot evenput hair spray on, use fragrances of ANY kind, natural soaps only, and organic foods. Thatis how bad my vulvar pain can get. Especially those that are plant based, or I am taking achance. Try getting rid of those. Even the other day, I was noticing more discomfort aftershowering (for 3-4 days) and the only thing I could think of was the shaving cream I wasusing. So, I thought I would shave instead with Ivory Soap. And yes, it made a difference.Please be aware of everything that you use, including soaps at work, etc. I just wanted tosay thanks for the website on the natural soaps. It will benefit me personally. For thoseof you with allergies, are you taking medication for it? Could it be that instead that isthe culprit? I have food allergies only, so I am not sure if it would cause a flare-up,but plants can be a major irritant. Thanks to Frank who mentioned that his wife isallergic to shellfish. I have a bad reaction as well. It got worse with age, and my throatcloses if I even breathe too much of it (like shrimp!). I was taking NAG (N-AcetylGlucosamine) prescribed by Dr Solomons and was getting the same kind of reaction, so Istop immediately. But, there was nothing on the package that said it was shell based. Imade sure I checked the label first. I wonder now. But, the info is appreciated! Ladies,remember that stress can bring on vulvar pain, so it is important to relax and meditate.Also, I have more pain 2 weeks before I menstruate, or during ovulation. At that time Imay have no let up in pain for days. But for some reason, it subsides when I actually getmy period. Go figure! You may want to make a note of flare-ups to see if this may be thecause. If it is, there really is not much that can be done, except for patience and aheating pad which is the greatest invention to me! Or warm baths. Just one question beforeI go- Does anyone have burning face, arms, and/or feet after they consume meats?Especially in large amounts. Thanks and be well. laurel
CommentI may be getting confused, but my periods are very light and sometimes not @ all. Iwent to my gyn, and she said that all I would have to do is to change birth control pills.She joked and said that she never had anyone who wanted to make their period come back.Needless to say, I have not been back to her since last year. Could this be some kind ofrelation to vulvodynia?
CommentI can sympathize with the computer situation as I just got one, and it has crashed (myluck!) already. I believed that you mentioned that you had a yeast infecton at one timeand was given Diflucan and Monistat. I have been treated with both and it made my conditonworse. I know that others take it with no ill effects, but it made my pain far worse sothat could have something to do with it as well. You have to be on your toes literally allof the time. If you think that something may aggravate the condition, make note of it. Youmay notice a pattern after a while. It can be a pain (pardon the pun) to do, but it reallyhelped me. And remember wha
CommentI can sympathize with the computer situation as I just got one, and it has crashed (myluck!) already. I believed that you mentioned that you had a yeast infecton at one timeand was given Diflucan and Monistat. I have been treated with both and it made my conditonworse. I know that others take it with no ill effects, but it made my pain far worse sothat could have something to do with it as well. You have to be on your toes literally allof the time. If you think that something may aggravate the condition, make note of it. Youmay notice a pattern after a while. It can be a pain (pardon the pun) to do, but it reallyhelped me. And remember wha
CommentI can sympathize with the computer situation as I just got one, and it has crashed (myluck!) already. I believed that you mentioned that you had a yeast infecton at one timeand was given Diflucan and Monistat. I have been treated with both and it made my conditonworse. I know that others take it with no ill effects, but it made my pain far worse sothat could have something to do with it as well. You have to be on your toes literally allof the time. If you think that something may aggravate the condition, make note of it. Youmay notice a pattern after a while. It can be a pain (pardon the pun) to do, but it reallyhelped me. And remember wha
CommentI can sympathize with the computer situation as I just got one, and it has crashed (myluck!) already. I believed that you mentioned that you had a yeast infecton at one timeand was given Diflucan and Monistat. I have been treated with both and it made my conditonworse. I know that others take it with no ill effects, but it made my pain far worse sothat could have something to do with it as well. You have to be on your toes literally allof the time. If you think that something may aggravate the condition, make note of it. Youmay notice a pattern after a while. It can be a pain (pardon the pun) to do, but it reallyhelped me. And remember wha
CommentI can sympathize with the computer situation as I just got one, and it has crashed (myluck!) already. I believed that you mentioned that you had a yeast infecton at one timeand was given Diflucan and Monistat. I have been treated with both and it made my conditonworse. I know that others take it with no ill effects, but it made my pain far worse sothat could have something to do with it as well. You have to be on your toes literally allof the time. If you think that something may aggravate the condition, make note of it. Youmay notice a pattern after a while. It can be a pain (pardon the pun) to do, but it reallyhelped me. And remember wha
CommentI can sympathize with the computer situation as I just got one, and it has crashed (myluck!) already. I believed that you mentioned that you had a yeast infecton at one timeand was given Diflucan and Monistat. I have been treated with both and it made my conditonworse. I know that others take it with no ill effects, but it made my pain far worse sothat could have something to do with it as well. You have to be on your toes literally allof the time. If you think that something may aggravate the condition, make note of it. Youmay notice a pattern after a while. It can be a pain (pardon the pun) to do, but it reallyhelped me. And remember what I told you about sitting. It is so important to stand as muchas possible. Laurel Sorry if this entry is submitted twice, pressed the wrong key.
CommentWell it is nice to see that you are not in pain, but more so have that annoyinguncomfortable feeling. There is no way, unfortunately to know if it will ever disappear,but if you are taking all of the right measures, I can't see why you couldn't get rid ifit.
CommentJust recently started reading this website. I'm having a very bad day and need to sharewith other sufferers. I've been seeing a dr. in Ann Arbor, MI for my vulvodynia. I've been on Elavil for 1year and I felt I was making progress. Sure, no sex life. But, walking around with littleto no pain was a big improvement. I had good days and bad days. Went to see the specialiston Mar 23 (2 1/2 weeks ago). They decided to switch me to Neurontin (an anti-convulsent).I weaned off Elavil and went on the Neurontin last week. It made me very sick to mystomach (tried it twice--got very sick both times). In other words, I spent ALL of lastweek throwing up and being dizzy. At this moment, I'm waiting for the specialist to call me back with a new game plan. OnSunday I put myself back on the Elavil because the pain came back something fierce overthe weekend (can't even walk or sit or move without pain). Since my body's been off theElavil for all of 1 week, it's not handling it well at all. I'm on 10 mg (was at 50 mg 2weeks ago) and I'm practically falling asleep at my desk at work. I'm so depressed. I'm in pain. I'm sick of it. When I take the Elavil I am tired,groggy, etc and it's much worse now that I've re-started. I've been forewarned that Elavil & Neurontin are my dr's "best bets"which is making me feel like I'm running out of options. Any words of encouragement would be greatly appreciated. -Cheryl
CommentSo your doc confirmed you have low estrogen? Does she think that means you are goinginto menopause. Have you had iregular cycles or scant periods your whole life? Irregularor non existant periods can be from having very low body fat (what you were indicatingabout the running) but also can happen if you have PCOS. Although, PCOS patients usuallyhave high testosterone. There si a blood test you do day three of your cycle for that.What I want to say is that if you feel that your problem is a hormone problem, I would seean endcocrinologyst, not an OBGYN. OB's are very good at delivering babies, not withdisease. If you got cancer of the ovaries (God forbid) you would see an oncologist. Well,screwed up hormones you see an endocrinologist. I would even say that it would be ideal tosee a reproductive endocrinologist (R.E.) because they have a better understanding of ayoung womens hormones (not sure how old you are). See, there are things that are overlooked all of the time. Like people with PCOS don'tovulate. They used to give these women tons of hormones to get them to ovulate when theywere trying to get pregnant. The thing is they found that PCOS patients have there insulinnumbers off a little bit. Nothing that they "think" needs to be treated. But ifyou give a PCOS patient Glucophage (a diabetes oral medication) they begin to ovulate ontheir own. The underlying problem seems to be the sugar problem. Many GYN's don't knowthis. I have two girlfriends that wasted their time with their GYN's trying to getpregnant, when I had diagnosed them with PCOS a long time ago. One of them just finallyhad a baby, and the other is trying. I am not trying to say that you have PCOS. I do like to take the time to let others whoread this have more information about hormones and how the medical community can be veryignorant. What I am really trying to say to the person I have been having thisconversation is (I don't know your name) make sure you are seeing the right type ofdoctor, and even then you might have to hunt for one you think is competent. Don't stickwith a doctor that is not helping you. I usually do not spend this much time on this website anymore, because I am sosaddened, and actually become anxious hearing all of the suffering. My heart goes out toeverybody, it is such an awful syndrome. Someone wrote recently that we all need to get ANGRY and BAND TOGETHER and BE OUTSPOKENnot hide in our homes. They are right. I encourage people to talk about there pain.Unfortunately, it is difficult to practice what I preach, because I combat soooo manypeople that don't agree it is infectious, don't even hear my logic behind my thoughts,that I am worn out. Not to say that if I have information that is non-bacterial I won'tshare it (obviously I have done that here). But, I know that mine was bacterial, and Idon't want to fight about it with doctors, researchers or vulvodynia sufferers. A gooddiscussion would be great, and I have sought out the vestibulitis researchers at Cornell,and I have tried to locate a researcher who is interested in infectious disease of thegenital tract, I have called the CDC NIH, but the research that is going on is not aboutbacterial infection and howit relates to vulvodynia, and all of the vulvodynia doctorsdon't believe it is infectious, and they have convinced most of the patients that it isnot infectious, and as you can see....it is just very frustrating and exhausting for me. Iam not bitching just venting. If I can help anyone with vulvodynia I will, and I am not so stuck on my infectioustheory that I think that is the answer for everyone.
CommentTo Cheryl: I am so sorry that you're not feeling well these days. I was wondering whyyour doctor decided to wean you off of the Elavil and start you on Neurotonin if theElavil seemed to be working for the past year? Sometimes these doctors just don't makesense. Since you put yourself back on the Elavil, maybe try taking the medicine about 2hours prior to bedtime. Hopefully that will keep you more awake during the day. My doctorsaid she is confident that most women with nerve ending pain in the vulva will be"cured" if they can stay on the medicine long enough. I would love for that tohappen for me, but right now I'm not taking Elavil. (Hoping to become pregnant) So, maybeif you stay on it for a year and a half, then wean yourself off of it in a month's time,hopefully you'll have this nightmare behind you. Just keep thinking positive.
CommentTo Cheryl and all: I haven't written for a while, but I went to see Dr. Haefner at U of M also. Neurontin,Cromyln cream, elavil did not work for me. There last suggestion was to do biofeedback. Iwas very skeptical. I had 12 sessions with the physical therapist and she taught me thebiofeedback (it is just doing kegel exercises ALOT) to get the pelvic muscles back inshape. Mine were very weak and also I think I was having spasms. She also did somemyofascial release, which is supposed to eliminate scar tissue. If you do this therapy,keep an open mind. It seems hokey, because all she does it put her hands on you and feelyour bodies 'motion'. She says that our bodies have a certain motion and scar tissuedisrupts the motion. She says that releasing the scar tissue puts the body back in normalmovement. She helped me a great deal. Her name is Stephanie Ruseckas and she works at theBeaumont Rehab in Birmingham, MI. The other thing that I have to do is keep my bowels moving. If I don't have a bowelmovement every day, I will be in pain from that. I don't know if the bowel is pressing ona nerve or what. I have to eat tons of fiber (I eat 'Fiber One' cereal in the morning). Idrink at least 64 ounces of water per day. I don't know if this will help anyone, but I have pain free days now. I have not hadintercourse for many years and have not tried recently, because my husband and I are notreally getting along too well. Also, Cheryl, ask Dr Haefner for the cream mixture of elavil and a muscle relaxer. I amusing that too. I am not sure if it helps alot, but I am afraid to stop anything that I amdoing right now. I don't want any flare ups. Good Luck to all.
CommentFor Cheryl--my doctor initially put me on a combination of neurontin and elavil, whichi stayed on for 3 months with almost no improvement. the side effects became so terrible(i couldn't get out of bed because i couldn't stay awake, i cried all day, and developedserious panic attacks) that i convinced me doctor to take me off the elavil. as i came offthe elavil, my pain increased rapidly, which made me realize that the elavil had beenworking, only not enough. she then switched me to NORTRIPTYLINE, which has many fewer sideeffects, and i have been able to tolerate, even high doses, quite well. infact, my painhas really improved on NORT, and i am so glad i made the switch. so don't lose hope,neither the elavil nor the neurontin helped me, but i am finding other combinations ofdrugs that do. my doctor reassures me that there are many tricyclics that one could try. ihope this helps. one more thing, i spoke with a doctor in New York who frequently usesonly CELEXA to treat her patients with VV. It is not a tricyclic, but an SSRI. GOOD LUCK!
CommentLynn, I have started using the Vanicream. I can't tell if it has started working yetbecause I have not had to sit down for a long time @ work this week. How long have youbeen using Vanicream, and how many times do you put it on a day? Let me know if possible.Thanks! SAC :)
CommentIn response to "Katrina, Australia" Scarring, sex, pain. I just returned from seeing Dr. J.Paul Perry at the BrookshireHospital in Birmingham, Al., USA. Since hysterectomy in 1996, intercourse has been painfulwith burning on urination 24 hours later. Other doctors offered anesthetic cream(temporary) but that didn't stop damage to tissues with intercourse; said apply sterioidsas I had vestibulitis, etc. Dr. Perry diagnosed Pereneal Webb (scar tissue) withassociated nerve damage. I'm to use Estrace twice a week high in vagina and twice dailymassge in 2% testosterone cream. He said after two months I should see relief as this willencourage new blood supply and strengthen tissues. This has strained my marriage so amhoping for relief. I will post again in two months with results. Good luck.
CommentTO JENNIFER AND ANN: Yes, my periods have become very faint to non-existent. (I'm 35,and they've been this way the past several years. I started with vulvodynia at 28.) Mygynecologist "says" that as you get older this can happen. (But, then my doctorshaven't been right about much, so I wonder!) :) I think it's related to the vulvodynia.(Oh, and I WAS on birth control pills, but went off of them in July 2000. No change in theperiods, though. Still barely there. To LAUREL: In response to your question about whether anyone has burning face or feet,etc: I AM getting this: feet feel like they are "burning", getting tingling inhands and feet, face gets this weird sensation of irritation: not really tingling, persay, but like a tightness of the skin, like you've been sunburned or are getting hives orsomething? WHAT IS THIS???? It's been driving me crazy! I've never noticed it specificallyafter I've eaten meat. It's just a daily thing, but then it'll ease up and pretty muchstop for a while. Then it comes back! To AMBER: What kinds of symptoms do YOU get with fibromyalgia? I think that I may begetting this as well as the vulvodynia. I'm getting alot of "nerve" pain inknees and elbows, across shoulders, etc. Tingling and numbness. Just acheyness. Thanks all!
CommentJennifer -- I think your postings are extremely helpful and I hope you stick with us.We all need to think outside the box a little more! Couple of questions: what is PCOS? Anddo you think Dr. Toth would see someone without fertility issues? Without a partner, justfor the possibility of infectious vvs? Or where else (I'm actually in California) could weget the kind of cultures and treatment he does?
CommentToth will see you, even if you do not have fertlity issues. His lab is very wellrespected in NYC, and patients are sent there for cultures, when the standard ones are notshowing anything. I do not know of any other doctor that does the same work as his (I donot live in NYC either, so I understand the inconvenience). I would assume that there areuniversities that could do these cultures, but they would need to be interpretedcorrectly. There is a lot of normal flora that Toth believes is pathological. One thingabout Toth is that you would have to go to his office to get the cultures, but he willsend you your results via mail, along with the prescription if you need oral antibiotics.If you need an IV you can ask him to write up a recommendation for your doctor where youlive, assuming you have a doctor that will administer. Or, of course, he may not recommendantibiotics altogether. Deborah, if you still have regular cycles, even with very light periods, I don't thinkyou have PCOS. My point was if you strongly believe that it is hormonal see a doctor thatdeals with hormones, the endocrinologist. You probably understood that, but I wanted to besure. See, each specialist is in their "specialist box" (did I write thisalready? Sorry if I am repeating) The serm guy will give you creams and ointments, the GYNwill throw Monostat and a few antibiotcs at you even though all of the cultures came backnormal, If they consider themselved specialists in vulvodynia they will add elavil, orprozac, etc. I don't know anyone that is all better from these standard treatments forvulvodynia. Now, I do know that there have been some people cured when they were put onheavy duty antifungals, I know that one woman was cured because they finally found agrowth near the entrance of her vagina, and once it was surgically removed she was allbetter. It is important to be very specific in medicine. These God damn doctors havedumped all of you into the horrible diagnosis of vulvodynia. All that means is chronincvulva pain (some of you did not even get a diagnosis, you had to search the internet tofind women like you). My rheumotologist got angry at me when I used vulvodynia, heinsisted that I should use vestibulitis because I had redness and inflammation...visiblereasons for the pain I was enduring at the time. If you have "nerve pain" not inside, but on your skin, where your pubic hairis down your legs, or all over your body, I am convinced that is a form of RSD. Like yourclothes bother you, and taking a shower hurts. RSD is found usually after a trauma to thebody like a gun shot wound, or surgery. I had suffered from this for years with myvulvodynia (my rheum would be angry I used that word again). Seems that there is some sortof feedback loop in the nervous system that gets screwed up. I had these symptoms veryintensely the first couple of months that I was suffering with the vulva pain, then theykind of came and went, always having some sort of low level discomfort. I was so jumpy ifsomeone touched me if I was not ready to be touched...thrilling for my husband. All ofthose symptoms are gone for me now. By the way, I would not describe it as tingling,numbness, or achiness...it is painful, very much on the surface of the skin. My rheumotologist, Toth, and I all kind of buy into the fact that the body is producingall sorts of "fighting cells" to fight whatever infection is there. Over timethe body produces different types, and more of them, enduring this horrible battle.Eventually, the body might be producing immune responses that might effect other tissuesand organs producing some of the other symptoms that are described (like the autoimmunediseases everyone is talking about). I don't think our body just attacks itself, I thinkmost of the time there is probably a cause that we have not identified yet. Could beinfectious, could be chemical, etc. This is not accepted by the medical establishment. Iwill try to tell you when it is theory, or something commonly accepted, I don't want youto take my ideas as gospel, but to keep gathering information, and evaluating what makessense to you. One last thing, I think I have mentioned before that over time I had horrible digestiveproblems around the seventh year of my disease. The large intestine is adjacent to thereproductive organs. When I had my surgery all of that flippin' scar tissue had adhered mycolon to my ovary on the left side. They separated it, and 95% of my digestive problemsare gone. Scar tissue wreaks havoc on the body. Well, those are all of my thoughts for now.
CommentForgot to write for Karen that PCOS is Poly Cystic Ovarian Syndrome. If you have aspecific question about that you can email me...symptoms are: cysts on the ovaries, noperiod or very irregular periods, weight gain...you don't necessarily need to have all ofthese symptoms, I know many women that are very thin, but have PCOS. Also, I personallytend to think that it is not related to vulvodynia, but Toth theorizes that Pelvicinfection can begin to affect the ovaries, and the hormones of a women. Again, notaccepted by the majority of medical professionals. And I see that I had some typos on my last entry. I was speaking of dermatologists whenI spoke of the doctors that just throw creams at you.
CommentJust thought I'd post since I left my depressing post yesterday. My dr. did switch me to another tryclic (whatever) called: Norpramin (also calledDesipramine). Thankfully it's not as sedating as the Elavil. It will take at least 2 weeksto see if it will work. I took it last night and I felt much more "with it"today, which was encouraging. Before I took the new med last night, I, all of a sudden, felt much bettervulvodynia-wise. I don't know if it was from the 2 days worth of Elavil or from the newvitamins I've been taking. I thought I'd share what I'm taking for anyone's who'sinterested. I picked up a book by Michael T Murray, MD called "Chronic Candidiasis". Tobe honest, I bought it because it had a segment on vulvodynia. To sum up, he recommendsfollowing the Dr. Solomon's low oxalate diet combined with the diet Dr. Murray describesfor the yeast syndrome. He also recommends the following supplements from EnzymaticTherapy: Krebs Cycle Chelates (1 Tablet 4 times daily), Doctor's Choice for Women (1Tablet 3 times daily), Candida Formula (1-2 capsules twice daily between meals) andEnzydophilus (or Acidophilis) (1 capsule 3 times daily w/meals for the first week,thereafter 1 capsule daily with a meal). I don't think that the author has any affiliation with Enzymatic Therapy (at least Icouldn't find anything on it). I went to 2 different Health Food stores and both said thatthe brand is "top of the line". I compared the labels with other brands and waspretty impressed. However, they were pretty expensive. Rather than using calcium citratealone, Dr. Murray prefers the Krebs cycle product (he goes into a paragraph on this that Ican detail, if anyone's interested). Anyway, I'm glad that the pain/discomfort is bearable today. Could someone give me more information on the low-oxalate diet? I do have someinformation, but it's basically just 3 short lists of low-oxalate, med-oxalate andhigh-oxalate foods. Thanks
CommentDon't know what I did, but sorry for all of those submissions above! Thanks Deborah forthe response. I do not know the burning has to do with meats per se, but every time I eatthem in large amounts, my face begins to burn about 15 min to 1/2 hour after consumption.And it may last for up to an hour or so. Doesn't necessarily hurt me, but it is annoying.If I get the burning in the face, it is usually a pretty good indicator of what my vaginalpain will be like in the next few hours. I ALWAYS have vulvar pain between 2 and 3 hoursafter eating a meal so there is no doubt in my mind that food is the culprit. I find thatwhen I eat a small meal, I can escape discomfort much easier. Also, I have a poundingheart at about the same time. I wrote a few days ago that I found a doctor that was notaccepting patients for thyroid diagnosis until September. I wrote to him last week, givingall of my symptoms and family history. It was a 3 page letter about how I thought thatfibromyalgia was actually an underactive thyroid and how I believed that it was causing myvulvar pain. I told him that while I was chronically ill, the vulvar pain was the mostimportant symptom and I was desperate for him to see me to see if I was right. They calledtoday and wanted to see me today, but I was not home. However, I got myself an appointmentfor next Thursday! Amen! For those of you who think there may be a connection, I will letyou know what he says. For the woman who was interested in getting the low oxalatecookbook ( it is awesome!), write to Joanne Yount at the Vulvar Pain Foundation 203 1/2 N.Main St., Graham, No. Carolina (not sure of the zip). I am sure that they are on the web,but cannot recall the exact address. I think that by eliminating a lot of irritatingfoods, you will find a far lesser degree of pain. Please note that foods that are low inoxalate may still bother you, so you have to try each individually and the amount consumedwill make a difference as well. Good Luck.
CommentI forgot to add something. I think that someone may have inquired about sugar and it'seffects on pain. Sugar is supposed to be able to be eaten in any quantity, as it tested onthe low end of oxalate foods. However, those who are very sensitive to corn may find thatit is irritating. Sugar is a derivative of corn, so keep that in mind. And one more thing!Aspartame and saccharin are no-no's, for me anyway. Dr Solomon's warns of the flare-upshis patients encounter from ingesting all kinds of diet colas and soft drinks. He helpedme figure out why I was in pain for almost a year after a pretty good recovery period. Ihad switched from regular ginger ale to diet! Beware also of foods with those ingredients.Always read labels! Hope this helps someone. Talk soon. Laurel=)
CommentI know I am always adding, but when I go back and see questions, I am trying to help,truly! Anyway, you asked about fibromyalgia. It sounds as if you could be a candidate (butkeep in mind my take on thyroid). Assuming you do have the illness, I will tell you whatmy symptoms are. I have chronic fatigue, loss of energy, general malaise in that I feelterrible, but sometimes cannot pinpoint an exact area. You may have muscle and/or jointpain. Lower back hurt???? How about the chest area when you touch it? Also, neck pain andcheekbone pain, and frequent headaches. I feel stiff in many areas. If you get a book onthe condition, it will give you areas of the body that are most painful. I think that whenyou read the book, you will be amazed at how this is you! Also, numbness in the limbs andanxiety and depression are factors. I think that the book will be helpful for you. And ifyou think that this may indeed be you, then by all means find a doctor in your area thatwill sit and "map" you out. I am in the Boston area. I waited a year to see Dr.Don Goldenberg. He is Chief of Rheumatology at Newton Wellesley Hospital in Newton, Mass.I am glad I waited. He diagnosed me in January and prescribed Elavil. That didn't work forme because of the side effects of the medicine. At the present time I am takingGuaifenesin. It is a histamine in a large dose (no side effects at all). I started with300 mgs/day and I have worked up to 1200/day. Most people find their dosage between1500-2400 mgs/day. Some even higher! Anyway, that method of treatment is a reversal of theillness. So, you go from worse to better and have to be patient for it to work. Youactually get worse first, then better over time. I have not had a TERRIBLE day, but someare more tiring and achy than others. I feel that that method of treatment seems to behelping me. But the book will explain all of that (get the one written by Dr Paul StAmand). Hope this helps you. If you have a question, I can try to answer it for you.Thanks and the best of luck-Laurel
CommentTo Jennifer: Very well written post. I'm impressed by all the intelligent and well readladies who deal with these conditions, at the same time I feel a bit depressed to thinkthat in spite of all the smart ladies involved not much new seems to be happening. Theexpert on vulvodynia in Ct told us that tears to the vulva were what separated vulvodyniafrom V.Vestibulitis. That was more than a year ago and aside from wanting my wife to takeElivil he did not offer much. Why does the skin thin out?? is it hormonal, environmental?Genetic? plenty of questions and plenty of theories. I hate mysteries when they involvehealth. Our food, air and water have been tampered with, we are given drugs that aren'teven properely tested. God help us..
CommentI talked about the "specialist box" and the vulvodynia doctors fall into thatcatagory unfortunately. They believe that they can probably give you some relief withtheir meds, but that vulvodynia is not curable. They basically give the same meds to eachpatient more or less. I would bet that many of you like your vulvodynia doctor, becausehe/she was on of the first and few doctors to know what you were talking about, spent alot of time with you, good bed side manner, and gave you hope. Well, I went throught thattoo, but in the end I don't give a damn if they are nice...I want an intelligent medicaldoctor who is research minded and analytical. Don't stick with a doctor for years. If ithas been years....you are not getting better! The doc's who claim to deal with vulvodyniaall of the time all go to the same conferences and read the same journals. Also, I wanted to point out to the person who asked if Toth will see non fertilitypatients that when I first went to Toth I went for my vulvodynia...my fertility was asecond thought. Toth kept coming back to my fertility which was upsetting me, because Iwanted to be sure he was understanding my desoarate need to rid myself of my daily vulvapain. I was telling my apprehension about this to my sister, and she pointed out that Tothprobably uses fertile as a synonym for "a healthy reproductive tract". I thinkshe was right. Frank, thank you for the compliment. I think that the skin is irritated, taught, thin,sensitive, etc, due to the inflammation. Does your wife have redness? I realize youprobably have stated this before, but I have just started reading the postings againrecently. Does she feel better if she keeps the area rinsed with water throughout the day?I hope she knows how lucky she is that you are so involved in searching for answers. Iknow a women, who I speak with regularly, that frequently gets cuts also. She hastremendous relief when she uses cleocin cream intra vaginally. She is fairly convinced hervulvodynia must be a bacterial infection (she felt this way even before she"met" me) but has not worked up the courage to see Toth yet. You are right it isa mystery that needs to be solved. Look at the evidence, gather information, put ittogether, ask lots of questions. This is what the typical doctor does NOT do. What they dois they eliminate what it is not...you don't have cancer, you don't have herpes, you don'thave HPV, you don't have chemical sensitivities, you don't have dermititis, you must havevulvodynia...unexplained vulva pain. Then they find that right now the typical treatmentis three weeks of kenalog, once daily estrace, and elavil in increasing doses. They seemto have no desire to figure out anything more, because now they have turned to the textbook, end of thought process. Now, I will say that certain specialist are less in a boxthan others...rheumatologists, Infectious Disease, endocronologists tend to look at thewhole body. There is a saying "no disease is an island". All of your symptomscount!!! You GYN looks at your gynocological symptoms, the gastro guy is just thinkingabout your digestive tract, but all of this crap is probably interrelated. Rheumotologistsare especially interesting, they treat autoimmune disease. There is a subgroup of themthat believe that bacterial infection is the cause of many of the diseases they treat.There have been books written on small studies that have been done treating sclerodermaand rheumatoid arthritis with antibiotics, having a lot of success. I personally knowpeople that have had this type of success. Hell, look at Lymes disease, previously thoughtto be arthritis, now known to be arthritis cause by a bacteria carried by a deer tick. Idefinetly think that vulvodynia could be considered rheumatic, the problem is that thosedoctors are not accustome to examening a womens vulva. THIS IS ANOTHER BIG PROBLEM!!! Justbecause a doctor is a doctor, it does not mean they feel comfortable examening a womensgenitals. So the rheum or the ID guy might have some genious thing they could come upwith, except that they don't ususally examine that area of the body. It is a nightmare. Well, two people have contacted me, one who has already been to Toth, and another thatwill probably go. I am sure they will post what happens so everyone will be more informed.
CommentTo Jennifer: To answer your question my wife does not get any redness in the area, justa recurrent tear. I have to be very careful during sex not to put any pressure near thesite that tears. I have written many times how amazed I am that after three vaginaldeliveries and a very active sex life with no problems other than yeast infections thisseems to suddenly appear. I don't like to make the Doctors the bad ones here but they doseem to group people, from what I have seen they are not very open to questions either.I'm a nudge if you know what that is, kind of an annoying person sometimes but I havetried to be respectful when asking questions. You would be amazed at back and forth I havehad with some Doctors. They are so all powerful, I feel sorry for the weak willed who areunable to verbalize against these Gods. Enough of my frustration. Take care.
CommentI know what nudge is...and you do have to have a certain amount of chutzpah to getanywhere with the docs. At the same time if you get angry enough they shut down, veryfrustrating. I am convinced many of them wrote on their charts that I was full of anger,and easily emotional. So, your wifes is out of nowhere? Was is right after a pregnancy?That is baffling. I don't mean to dwell, but if you really look at her vulva...and touchthe reddist areas, maybe with a q-tip to be precise (of course there is shades of red/pinkon a normal vulva) does she say the intensity of the pain is in those specific areas? Doesthe water rinsing help her? Does she perceive the pain as though the tissue is affected,like a raw feeling, that it will crack/split open, or like an open wound? Or, is the painfelt more like an inside feeling? I don't mean inside of the vagina, but inside like it isnot on the "skin" of the vulva? Frank, seriously, if she has not tried using a squirt bottle with a steady stream whenyou squeeze the bottle, you have to get one. She should use it every time she urinates,and take a cool to warm bath (not cold not hot) every evening, no soap, don't have sex,and she should drink an extra 16 ounces of water above whatever she usually drinks (unlessshe is already drinking tons of liquid), for 4 or 5 days. If it is working it will workwithin a short time...none of this lets try it for three months stuff. One other thinghave her stay away from cranberry juice, citrus, and extra vitamin c. I know I usually amnot into the herbal/natural/health thing, but these substances can be aggravating. If shefeels better after a week, then reintroduce the citrus and vitamin c, if she likes to havethose things, if she does not feel worse, it probably does not matter. Mind you, this will only make her feel better, and not have her tissue break open,HOPEFULLY, I don't think that is the cure. You said she had yeast infections...did the doctor actually culture yeast, or did hejust look and guess, or was your wife just guessing? Well, I don't mean to grill you, I just want to help if I can. I am trying to determineif I think her condition has similarities to what mine was like. If it is like mine Ithink I can really help, and you seem very bright and open to ideas that are logical. Ifit is not like mine, I can try to direct you with what I know about medicine, but I wouldnot be able to speak from personal experience.
CommentTo Jennifer: Thanks for the concern, I'll try and be brief because I have posted thesame several times and I'm sure many are tired of reading it. Here goes, Our youngestchild is 7 and the tearing started a little over a year ago. My wife has been treatedthroughout our 20 years together for many yeast infections. The vulvodynia expert said shehad a yeast infection and prescribed boric acid suppositories. She has used them on 2separate occasions. I'm the one who first noticed the tear to her vulva not her Dr.. Heoperated on her to repair a rectocel and reattach some muscles damaged during deliveries,he also formed a new scar where she was tearing. Didn't work, still tears at the sameplace the six o'clock position. She is sick of discussing this matter that's why I'm onhere not because i get a kick out of this. I have to be very careful of any suggestionsnot to offend or upset her. She is bright and hardworking just not interested in thismatter. We are different in this way, I seek answers and she avoids them. Don't mean tosound negative. She showers every morning but I know she will not use a squirt bottle. Gotto go but thanks anyway.
CommentForgot to mention when we were first married my wife had a yeast infection and wasgiven Monistat. I read inserts on meds and when I questioned whether or not a culture wasdone to identify the strain of yeast her Gyn suggested I was hiding a venerial disease. Somuch for challenging the Docs. I have asked to have certain hormone levels checked but itgets back to the same thing unless the Dr. wants to do it you are just an annoyance. Ihate the thought that I'm hurting my wife as a result of lovemaking but if I abstain shegets upset. Life sure is crazy.
CommentFrank, Has your wife been tested for HPV? Has she had a biopsy in the area where shetears? When she tears does she experience a lot of pain? I have been tearing for yearsafter sex, but it does not interfere. I just sting for a few days afterwards. I havepre-cancer cells where I tear. She needs to have a biopsy in that area. Maybe the surgerythe Dr. did made her smaller there and you are too large for her now and the scar tissuedoes not allow for the skin to stretch to acommodate you. That is just a theory. You soundlike a great husband! It is a shame more men are not like you!
CommentVery curious. I required just one stitch when I delivered my son. I cannot say that itaffects my vulvar pain (pain is on the left, stitch was on the right), but there are somedays when I can feel the exact spot, as small as it is. And that was 5 years ago! I cannotimagine tearing over and over again. That will prevent the wound from ever healingcompletely. Also, does your wife use estrace cream? It does provide relief. Also,glucosamine and HTO will plump the area after time and regenerate tissue. I know youmentioned that the glucosamine caused allergic reaction. Let me know if you find a morenatural form of it, as I would love to try it. Last question: Is your wife dry in thevulvar or vaginal area? I would think that it would cause the scar to open up or crackagain. If she does not use the estrace cream, I found relief in breaking open a purecapsule of vitamin e and applying some of it 2-3 times daily. But you have to use a smallamount at first until the body gets used to it ( a few weeks). It really does work. Hopethis may help. Laurel
CommentLet's all get serious here! To faith who posted on 4/7 who prays every day for the painto go away and nothing is working at all; And to Frank who posted on 4/8 who wants toblame and be upset with the medical community. There is only 1 reason why we all suffer.And 1 reason why our prayers are not being answered. It's because god is upset at all ofus sufferers. He's the only reason why we suffer. He's not going to answer our prayers andhe's not going to find us a cure. He loves to see us women suffer this way. That's why hebrought this horrible monster in our lives. I don't know why he chose us, but he did. Andthat's why I have no faith anymore. Don't no one write me back telling me nothing aboutgod of faith. Because I don't want to hear any of it! Some women have been suffering foryears and years and years. They've been praying and having faith but nothing has helped.So how do you explain that? You can't! It's like I said, god (if there is a god) is upsetat all of us and that's why he's making us suffer. So don't be upset at the medical comm.It's not their faults we suffer! It's god!
CommentLet's all get serious here! To faith who posted on 4/7 who prays every day for the painto go away and nothing is working at all; And to Frank who posted on 4/8 who wants toblame and be upset with the medical community. There is only 1 reason why we all suffer.And 1 reason why our prayers are not being answered. It's because god is upset at all ofus sufferers. He's the only reason why we suffer. He's not going to answer our prayers andhe's not going to find us a cure. He loves to see us women suffer this way. That's why hebrought this horrible monster in our lives. I don't know why he chose us, but he did. Andthat's why I have no faith anymore. Don't no one write me back telling me nothing aboutgod of faith. Because I don't want to hear any of it! Some women have been suffering foryears and years and years. They've been praying and having faith but nothing has helped.So how do you explain that? You can't! It's like I said, god (if there is a god) is upsetat all of us and that's why he's making us suffer. So don't be upset at the medical comm.It's not their faults we suffer! It's god!
CommentLook at all we go through! It's stupid and rediculous just to survive. I hatehim!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
CommentTo anti christ: You obviously believe in God, because if you were an athiest thethought of blaming him would not even enter your head. The more you stay stuck blaminghim, and not taking action, the less likely you will find an answer. And to the veryreligious on this site, I know that there is a saying that goes something like 'you shouldpray like everything counts on him, but take action like everything counts on you.' Ithink that is an important saying. Take action, read, gather information, use your logic,read this site for support, but go out on your own and learn about medicine and science.That is all I will say about religion. Frank, I understand your frustration. My husband hated hurting me, but I desperatelywanted to have as normal a sex life as possible. Ha!! That is a joke. Having to becareful, and worrying about hurting the person you love, when you are supposed to beengaging in a rip roaring, hold back nothing, pleaseure act, sucks! I don't feel sure that your wife was having yeast infections. As you said they did notculture it. The area she tears is one of the more delicate areas of the vulva. Thedischarge from the vagina tends to run down and back. I think that is why many women havea lot of problem back on their anus. I also understand your wife not wanting to try anything new right now. She is fed up,sees no hope, and talking about it, and acting on it stirs her up. I have to admit I ammore stirred up now that I have been looking at this website again, and my vulva is finenow. But, oh how I remember the suffering both mentally and physically. Another thing, when she goes for her yearly check up have them culture for microplasmaand ureaplasma urealyticum. This "bacteria" needs special cultures, it will notbe done as a routine culture. Many GYN's don't know about this culture, but some do.Usually it is taken from the urethra. Some R.E.'s actually say you can culture it justfrom a urine sample, but I think a swab is probably better. Lastly, I think doxycycline is worth trying too, but if she won't try the water shewon't try this. I would recommend against the biopsy the other woman suggested. It is not veryuncomfortable, but I really doubt she has HPV. By the way to the women with HPV/displaysia/pre-cancer. HPV is a precursor to cancer.It has been shown that 90% of cervical cancer is caused by HPV (warts). If you had thebiopsy recently, you should have the block and slides of tissue sent to have a DNAhybridinazation. This is VERY IMPORTANT. You may not have HPV, you may just haveinflammation in the area, and it is being interpreted incorrectly. I am afraid that youmight go through treatments for HPV that you don't need. Don't get me wrong HPV is verycommon, and you might have it, but I think you should have the extra test done to be sure,because you vulva tissue is in a very delicate state, and you should avoid acids, andsurgeries.
CommentTo the person who says they are the anti-christ, we are all entitled to our opinion,but as said before we have to stop blaming anyone for this disease. Whether you choose topray, ban all medicines and stop going to the doctors are your choice. I will continue toseek answers, ask questions and PRAY about this whole ordeal. Let's leave our religiousbeliefs behind us and try to "help" each other by discussing these issues.
CommentWhen I got this condition, I was in kindergarten. But in 1992, you cannot imagine thepain I was in. I did not pray for God to take the pain away. He (or She!) does not work inthat way. I prayed for him to give me the strength to find ways to take the pain away. AndI have. Am I cured? No. But I am so much better now. That low oxalate diet and the pills Itake really do help. Are you following these measures? It sounds as if you need to vent.Every once in a while I scream and yell and feel sorry and cry, and it helps me to moveon. We have to face this head on. I think that a cure will be found. I hope for you to getwell. Please muster up some faith. It will keep you from losing your mind! Good Luck.laurel
Commentwhether we are religious or not, we are in pain and we are angry, and so i understandyour bitterness, because it is my bitterness. yet i completely agree with the previouswomen who have written an answer to you. we need to muster up strength because we areengaged in a horrific battle, but we have a chance at winning our lives back. not beingparticularly religious myself, i try to remember all i have to fight for---my wonderfulsister, a man i love, and a dream i have of future happiness, which i will never give up,although i am suffering something awful right now! whenever i think that i cannot go onanother day i try to imagine what some of the world's greatest heroes would have done inmy shoes. i want to get better so that i can then fight for women everywhere with thiscondition--i will make it my life goal. we are so so unlucky to have this condition, butthis is our only shot at life, and i am not going to let this beat me. i am sorry, i donot mean to preach, and believe me, i understand all that you feel. but i do believe thatwe can help ourselves and then we can help other suffering women, who are less fortunate.i am not mother teresa, and right now all i can think about is getting myself healed. butwe cannot give up, we all have so much strength, and i am so proud of all of us.
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CommentTo Jennifer: You hit on alot of things many of which are true in terms of emotions. Nottested for HPV yet, you are right that all discharge hits that area most. We make sure sheis well lubricated and the surgery did not change our fit. A quick word to the " AntiChrist" you sound like a very disturbed person, I am sorry for your physical andemotional suffering. Personally I don't believe God to be a male but rather a spiritdevoid of gender. I have lost a child and lived a life of pain and pleasure withoutblaming God or the Devil. I am upset that more is not being done and I think if thisillness was a male issue there would be more being done. Please don't waste the time andspace to hurt these ladies any further, they are in enough pain as it is. Try to go onwith your life in a constructive manner. None of us are deserving of punishment so stopwith the guilt trip and get a life.
CommentWell Frank, seems you are at a stand still in a way, since your wife is not emotionallyready tp try anything right now. I went through that myself. I wanted to recommend to you that you read up on Bacterial Vaginosis, and PID.Actually, this is for everyone. There has been a lot of info lately that doctorsfrequently diagnose BV as a yeast infection. They are trying to, or maybe they came upwith, some sort of "quick test" for doc's to use in their offices. I was sorry to here about the loss of your child, Frank. There is probably nothingworse. I don't think I will be checking the site much for a while. I had mentioned that I amgoing through IVF, and the new drug I started yesterday is very irritating, and I am veryuncomfortable. I don't mind at all if someone emails me with a question, but I don't thinkI have much more to say. I have told everyone about my theory on bacterial infection, andwhat helped me get better. I will visit back if I get added information of others having success with antibiotics,and I am sure I will post something months down the line to let the "new people"know my experience. Lastly, to anti christ...I am sorry you are suffering so much. This is an unfairdisease. I was raised an atheist, and believe that things sometimes just happen.Personally, I don't care if someone is Buddhist, Christian, Jewish, Moslem, etc. I justlike to think that their religion and belief system gives them peace and inspiration.Seems to me that your religious upbringing has failed you in terms of coping with life.The thing is if others find their faith a comforting source it is not for us to question,and should not be posted here. And, I will go as far to say that the religious remarks byothers in this book about Prayer and God can be very offensive to the non-religious, ornon-Christians. I don't understand why those things are written, save that for yourfamily, home, and church.
CommentTo Jennifer: Best of luck with your new treatment. I think I'll give myself a breakfrom the site for awhile, this can get a bit consuming and I need to research some of theinfo I've gotten. Losing my child was and still is difficult but as I told my wife to loseour relationship because of it would be worse. I'm not always Mr. Bright and cheerful butit beats giving into depression. Lastly my thoughts on God and religion are not mainstreamI try not to push my thoughts on others unless asked, but I see the mention of God andprayer as a outreach of hope and gesture of good will not meant to offend thenon-believer. Take care ladies.
CommentFrank, Your words are always so encouraging. Take care of yourself and your wife as itseems that you have already done for so long. I often let my husband read some of yourentries so that he knows other men are certainly suffering too. Thank you.
CommentWell Frank, seems you are at a stand still in a way, since your wife is not emotionallyready to try anything right now. I went through that myself. I wanted to recommend to you that you read up on Bacterial Vaginosis, and PID.Actually, this is for everyone. There has been a lot of info lately that doctorsfrequently diagnose BV as a yeast infection. They are trying to, or maybe they came upwith, some sort of "quick test" for doc's to use in their offices. I was sorry to here about the loss of your child, Frank. There is probably nothingworse. I don't think I will be checking the site much for a while. I had mentioned that I amgoing through IVF, and the new drug I started yesterday is very irritating, and I am veryuncomfortable. I don't mind at all if someone emails me with a question, but I don't thinkI have much more to say. I have told everyone about my theory on bacterial infection, andwhat helped me get better. I will visit back if I get added information of others having success with antibiotics,and I am sure I will post something months down the line to let the "new people"know my experience. Lastly, to anti christ...I am sorry you are suffering so much. This is an unfairdisease. I was raised an atheist, and believe that things sometimes just happen.Personally, I don't care if someone is Buddhist, Christian, Jewish, Moslem, etc. I justlike to think that their religion and belief system gives them peace and inspiration.Seems to me that your religious upbringing has failed you in terms of coping with life.The thing is if others find their faith a comforting source it is not for us to question,and should not be posted here. And, I will go as far to say that the religious remarks byothers in this book about Prayer and God can be very offensive to the non-religious, ornon-Christians. I don't understand why those things are written, save that for yourfamily, home, and church.
CommentDo you think if it was the "burning penis syndrome" there might be a cure orbetter treatment? Hmmmm.
CommentI noticed that someone stated that colas and caffeine make their symptoms worse. I'venoticed this also, but thought it was just me. Could we start a list of foods and beverages that make our conditions worse? I'll start: Any kind of soda pop, especially caffeinated
CommentI have to say that the post by anti-Christ was the most interesting thing I've seenhere in a long time. I have to say, though, that I think blaming God is missing the point.Why not focus on the fact that we live in a puritanical country where sex-positivehealthcare is considered taboo and insurance coverage for something like this isconsidered less important that a tax refund to buy a new S.U.V.? Why do we continue tosupport magazines and newspapers that perpetuate one standard of beauty so that we remaindepressed (and poor from spending money on clothes and make-up and depending on men whomake more money)? Just curious, but I thank anti-Christ for finally giving us something tothink about.
CommentFrank, don't leave us! It is wonderful to have a male response on this subject. Pleasekeep posting. If you come across information that will be helpful to us please continue toshare.
CommentNO-NO's (high group): chocolate, cocoa, ovaltine, beer (lager draft, pilsner,tuborgalthough all beers bother me), many teas (I will add for you the others later that areallowed), blackberries, blueberries, concord grapes, currants(red),dewberries, figs,gooseberries, kiwi, lemon peel, orange peel, raspberries, rhubarb, strawberries,tangerines, bread (whole, wheat), cheerios, graham crackers, grits (white corn),kamut,popcorn, soybean (crackers), spelt, wheat bran, wheat germ, whole wheat flour, yellowdock, cinnamon, pepper (over 1tsp/day), ginger (1 tbs), soy sauce, beans(wax,dried,green), baked beans in tomato sauce(canned), nuts, garbanzo beans, chick peas,peanut butter, sesame seeds, soybean curd (tofu), sunflower seeds, marmalade, beets,celery, collards, dandelion greens, eggplant, green beans (snap,pod, runner), kale, leeks,okra, parsley, parsnips, green peppers, pokeweed, potatoes(esp. sweet), rutabagas, sorrel,spinach, squash (yellow,summer), swiss chard, tomatoes (canned), turnip greens,watercress, yams. You may want to print this. These test high in oxalate. Tomorrow I willadd medium food groups. Hope this helps. talk soon.
CommentThe person who wrote that the puritanical society we live in hinders research andunderstanding of this disease is RIGHT ON THE MARK. If I may, I want to take the time tosay that right-wing political parties hurt women's causes, women's rights, and women'shealth. These conservative people (and I don't mean to say all Republicans fit into this)have no understanding of science. This is clear when you see the pro-life movement. Nobodyshould be ordered by the government, man or woman, to give a peice of their body tosupport another life. We should have complete control over what is physically done to us.A man cannot be ordered to donate blood or a kidney to his neighbor, and a woman shouldnot be ordered to give up her body systems to a fetus. I talk about this not to convinceyou to be pro-choice, but to make you think about the slippery sloap of taking away rightsover your body, and how women's bodies are valued differently than men. Frank is right...I had a male friend whose penis started to hurt, and his doctor gavehim six weeeks of antibiotics, he is all better. Maybe if some of the people that hadvarious infections in the beginning of their plight with vulvodynia had received six weeksof antibiotics, they never would have become vulvodynia sufferers.
Commentmedium oxalate groups-remember that it is possible that some of these can stillexacerbate symptoms, so eat these in smaller quantities: beer, Budweiser (bottled), beer(draft-12 oz), low acid coffee, fruit juice-grape,orange(4 oz), Bigelow teas, white wine(some report flare up), apples, apricots, cherries (red sour), Alberta peaches, Bartlettpears, Dole pineapple (chunks), Damson plums, Italian prunes *apples, bananas, grapefruit,grapes, pears, pineapples, and plums have been reported in Low and Medium groups inseparate tests- apples are low in oxalate when peeled* Lender's bagel (1 Medium), barleycooked, white bread 2 slices, 1 med corn tortilla, cornbread, 1/4 cup cornstarch, 1 medEnglish muffin (white), macaroni (cooked), oatmeal (1/4 cup), brown rice, saltine or sodacrackers (16 crackers), vanilla wafers (up to 25), basil (1 tsp), 1/2 cup dijon mustard, 1tbs nutmeg, 1 tbs dill, lima beans, split peas cooked, bacon (19 strips), liver, sardines,marzetti's no fat Ranch dressing, sponge cake (1 slice), 1 tbs strawberry preserves,asparagus, artichokes, broccolli, carrots corn, peeled cucumber (1 med), garlic, 1 cuoiceberg lettuce, mushrooms, mustard greens, onions, potatoes (white, Russet, Idaho), 1/4cup potato salad, snow peas, * cornflakes, macaroni, spaghetti, and oatmeal have beenreported in Low and Medium groups in separate tests. Cornflakes as low, mac and spaghettias Med, and oatmeal as somwehat high. Aspargus, brussel sprouts, cucumbers, mushrooms andradishes have been reportes in Low and Medium groups. Cucumbers are low in oxalate whenpeeled. Broccoli has been reported on the low/med borderline at 2 mgs oxalate per 100 gram(1/2 cup) serving. White potatoes have been reported in low, medium, and high groups (1/3cup recommended). Beer has been reported in low, medium, and high groups.* Some food onthis list that aggravate MY symptoms are- potatoes, corn, carrots, mushrooms, broccoli,all breads and pastas including cornflakes, crackers, and cookies, and bacon and pork ingeneral. I will add the low oxalate foods later. This is so much info to take in at onetime, but it does help. Talk soon-Laurel
CommentI write to share medical history i have in common with some other sufferers. I'd alwaysbeen a little bit sensitive, and little prone to yeast infections, but I did not startexperiencing symptoms that really bothered me until after a traumatic childbirth (vaccuumextraction and episiotomy, and probably a broken tailbone). Then I was diagnosed with VVafter q-tip test. I may have been starting to feel some symptoms (oversensitivity) duringmy pregnancy. Undissolved sutures, granulomas, and/or scar tissue seem to be making theproblem significantly worse -- radiating pain. I also have IBS. I have also been diagnosedwith PCOS, and I am undergoing fertility treatment. The fertility drugs seem to exacerbatethe problem, especially mid-month. In answer to a post in an earlier guest book, yes,there is some history of mental illness in my family (bipolar, possibly depression). Ihope that others will continue to share their medical histories as completely as possibleso that correlations can be found.
CommentFor Cheryl's list -- I'm on the low oxalate diet and appreciate Laurel's list, but whatI'd really like is to continue to collect personal responses of foods people have noticedcause things to worsen. Cheryl said that she reacts to colas. I react quickly and badly toparsley and to chocolate. I try to follow the low-oxalate diet for other foods, but Ioften don't actually feel any worsening when I eat them.
Commentthank you to the person who specified the high risk food. i hear that both regular anddecaff coffee are irritating, not so much for the caffeine, but because both are high inacid. have other women found them troublesome? are any coffees particularly low in acid? iwould really appreciate any thoughts. FRANK-- i have had my boyfriend read your entries aswell. i admire you so much. take care everyone.
CommentTo: Puritanical Society Commentor: Eight months of antibiotics brought about my severe case of VV. My dr. in no wayhesitated to impart medicine because I was a female. This illness is very individualisticand causes and cures are varied and multiple. This is the first time I've ever heard, read, or had it implied that I might have vulvodynia because of a "right wing republicanconspiracy." Aren't we sick enough without trying to add politics to the formula?Good Grief!!
CommentI know that those who have injured their tailbones have a high risk of vulvar pain. Youmention that mental illness is hereditary. There is every reason to believe thatdepression if that is one cause is a result of an undiagnosed thyroid. Get tested. Checkinto fibromyalgia as well. The 2 can do a number on you. Perhaps those caused by thetrauma brought out the condition. Look into this theory and do your homework on the two. Ithink that you will be surpised to see a link. good luck
CommentYes parsley and chocolate are two of the worst things that you can possibly ingest! Forthe woman who inquired about the low acid coffee. I will look through my back issues ofthe Vulvar Pain Newletter (by the VP Foundation). I think that the brand may be in there.If I find it I will post it on the this website. laurel
CommentHello everyone, I have had fibromyalgia for about six years, at least that's when I was diagnosed.Around three years ago I began to experience a lot of pain during intercourse - usually Icouldn't even manage it. My doctor checked me for all the usual stuff and said I had yeasteven though the culture didn't show any. So I have been using Canesten periodically forsymptom relief and my partner and I are not able to have intercourse. About six weeks ago I started having herbal baths in the hope I might get some relief.At the same time I started on Andrew Weil's Eight Weeks to Optimum Helath Plan - tons ofVitamin C, beet greens etc etc in other words oxalate overdose. One afternoon, after abath, I began to experience burning all through the vulva which has, basically, not let upsince. I am completely devastated by this. My symptoms are very much like vulvodynia; Ihave a lot of redness and swelling, especially when I sit in the car or walk too much. Thepain is diffuse and burning - it improves with rest, and I think the low-oxalate diet hashelped, though not very much. I can't sleep because I'm so afraid. Reading these letters Ikeep thinking there will be no help for me, and I REALLY fear going through the medicalmachine, test after scary test with doctors who either don't know the condition or don'tbelieve it exists.Before my FMS diagnosis I was sent all over the place, being tested forMS, lupus, you name it. It was frighteneing but this is worse as I'm terrified ofgynecologists.. But I feel I must go for the sake of my sanity! Does ANYONE know a doctor in Canada who is familiar with vulvodynia??? I'm in Nova Scotia - just moved here, ironically, at the urging of my FMS specialist(who is really an environmental illness guy) he has been insisting that a move away fromthe Ottawa Valley where I have lived the past decade would help my symptoms immensely. Andin some ways, I do feel improved. But I can scarcely appreciate anything about my healthwith this going on. I have anxiety attacks all the time and picture going on like thisindefinitely. I also would like to know if anyone else experiences swelling or small sores which comeup suddenly and then disappear in a day or two; if anyone else got GI upset from calciumcitrate; if anyone has tried various anti-inflammatories such as salmon oil or flaxseed orMSM - I give all three to my arthritic dog. And where can I get a comprehensive list ofoxalates in food? I printed one fom the vulvar pain foundation but it doesn't cover somethings I'm curious about. I will feel better once this has been diagnosed even though I'm so sure this is what Ihave. I think the anxiety is as bad as the discomfort and limitation. If anyone can giveme a doctor in Canada - if not in Nova Scotia, then anywhere up here! I would be sograteful. Even driving to the grocery store brings on swelling, redness and that burningsensation, even walking my dogs. I really need to start feeling more positive, any help atall would be appreciated. Thank you for this board! Oh, one more thing - I looked up vulvodynia on webmed.com andthey mentioned a study that found a gene??? Anyone hear about this? I see thatdifferentdoctors are using different treatments, I will try anything but m terrified of surgery. Idon't know how I would raise the funds but if I have to go to the US, I will. I like theidea of nerve blockers...I also plan to try guaifenisen therapy for my FMS which, in somecases, appears to ease or even reverse vulvodynia. There are a couple of FMS docs inToronto who can help with this or I can try to "educate" a local person. Anyone who would prefer to, please contact me privately. Thanks again everyone, and Godbless, Catherine
CommentI think what "Agree with the Puritanical Society Problem" was not any plot toframe Bill Clinton, or similar, but the idea that many women in this country grow upwithout adequate knowledge of their bodies because no sex ed curricula in high schoolfocus on the positive aspects of sexuality. Did you even hear the words Skene's glands orBartholin's glands before you started to have a problem? I believe that when that personwas talking about abortion, she was using it as a representative case of how many peoplesee women's bodies as vehicles for enhancing men's and babies' lives. I guess theanti-intellectual backlash people talk about really is hindering discussion when all youhave to say is "good grief" to any investigation into the relationship betweenhealth care delivery and other disciplines like religion, political science, or education.
CommentRe. Good Grief
CommentRe. Good Grief I'd like to tell all the members of the Guestbook that I regret having responded to"Puritanical." I don't want to waste your time arguing and name calling. Back ontopic...."Bag Balm", a farmer's product for sore cow utters, sometimes helpssoothe rawness caused by vulvodynia. You can feel it work in a matter of minutes. It lastsforever and can be found at any regular pharmacy or Agway store.
CommentI have been having pain for 5 weeks. waitting to see a specialist. I need someone totalk. I fell my life falling apart
CommentThis may be long, but I am trying to help those who want the low oxalate diet. Thesefoods are low in oxalate and can supposedly be eaten freely, although i find too much ofsome can irritate. I will let you know what bothers me, although each one of us isdifferent. Here goes: Coke(be careful), distilled alcohol in small amounts, 4 oz of thefollowing juices: apple, grapefruit, lemon, lime, pineapple; Schweppes Ginger Ale, milk,cider,butter, buttermilk, cheese, cheddar, cream, yogurt (natural, plain), margarine,Heinz mayonnaise, salad dressing, veg oils , peeled apples,avacado, banana, bing and sourcherries, thompson seedless green grapes, lemons and limes (no peel), 1 cup lemon and limejuice, mangoes, melons, nectarines, Hawaiian papaya, Hiley and Stokes and canned peaches,Bartlett and canned pears, pineapple Sainsbury and canned, green or golden gage plums,golden raisins, 1 cup Kellogs cornflakes, 1 tbs cornstarch, ehh noodles, macaroni, whiteand wild rice, rye bread, spaghetti, fresh basil 1 tsp, chives, 1 tsp dill, 1 tbs dijonmustard, 1 tsp oregano dried, salt, vanilla extract (pure is better), vinegar (can beirritating), cocnut, lentils, water chestnuts, up to 9 bacon strips, beef, chicken, cornedbeef,eggs, fish (haddock, plaice, and flounder, ham, hamburger, lamb, pork, turkey, carob,gelatin unflavored or Knox (1 packet), apple cider vinegar, Karo corn syrup, 1 tbs honey,jellies, jams, or preserves made with low and med fruits (1 tbs), pure maple syrup(1 tbs),sugar, acorn squash, alfalfa sprouts, asparagus, broccoli, brussels sprouts, whitwcabbage, cauliflower, peeled cucumbers, frozen green peas, 1/2 cup iceberg lettuce, mungbean sprouts, mushrooms, red pepper, white potatoes, radishes, turnips (roots), zucchinisquash- Okay, now here are the footnotes from the Low Oxalate Cookbook: Some have reportedflareups of painfrom consuming aspartame and other artificial sweeteners, while othersshow no ill effects. Some women have reported pain from drinking various juices,especially cranberry juice, while other show no ill effects. research indicates thateating or drinking small portions of high calcium foods such as milk with each meal mayreduce oxalate excretion, but did not include women with vulvar pain. Apples, bananas,grapefruit, grapes, peaches, pears, pineapples, and plums have tested in the Low andMedium groups in separate tests. Appples are low in oxalate when they are peeled.Cornflakes test in the low group, pastas above in the medium group. Asparagus, brusselssprouts, cucumbers, mushrooms, and raduishes have tested in the loe to med group inseparate tests. Cucs are low when peeled. Broccoli-low to med group @ 2 mgs oxalate per100 g (1/2 cup) serving. White potatoes test in low, med and high and flareups arereported by some. All of this information has been provided by the Vulvar Pain Foundationand it's low oxalate cookbook written by members. Laurel
CommentJust wanted to add that yogurt that contains active cultures bothers me, do not knowwhy. Possibly due to cultures similar to the bacteria in antibiotics. Same with cheddarand aged cheeses. Try in small amounts at first. Also the carob bean gum or xanthan gum incream cheese (something!). Try to limit salt intake and drink lots of water to flush outthe system. careful with breads and pastas and wheats and corn products too! Okay, not tomake you read more, but I think that this info will help as well. it to is taken rightfrom the Low Oxalate Cookbook- "The goal of the low oxalate diet is to limit oxalateconsumption from food to around 40 to 50 mgs per day. Oxalate is a self-regulatingsubstance. When the amount of the oxalate in the body is reduced too low, the body itselfmanufactures more. Thus, attenpting to reduce oxalate consumption to zero is NOTdesirable, even if it were possible to do so and maintain adequate nutrition. Some womenwho have severely restricted oxalate consumption by eating and drinking only foods andbeverages with little or no oxalate have reported flare-ups after initial improvement, ordelays in starting to improve. Eating foods with moderate amounts of oxalate has oftengiven them relief." Oxalate foods (100 mgs oxalate) are based on 1/2 cup or 4 fl.ozservings (100 grams) Low group-2 mgs oxalate per 1/2 cup serv Med group-2 to 10 mgs per1/2 cup ( small serv and moderation when eating from tjhis group) High group-Avoid! 10mgsoxalate or more Tomorrow I will add what irritants trigger the most flare-ups, as I thinkI have taken much of your time. Ireally hope this list helps. Bye for now-laurel Highgroup-
CommentNo sure what my diagnosis is? Saw a Gyn. a couple of years ago but was told thesethings can happen at a certain age (I was then 51) i.e. itching and thinning of the skinin the vulva area. I had began having terrible soreness after sex with the skin in thevestibule splitting and in pain for 4 to 5 days until it healed. Misery. Then when back tonormal I began to get itching and a 'crawling' feeling and also what I can only describeas feeling like some tiny insect was biting me all over idown there. Apart from tthesefeelings the only time I get sore is after sex. The Gyn. tried me out on severalhydrocortisone creams but I did not like the effect which made me wet and uncomfortableall day (also heard that prolonged use thins the skin - the last thing I needed. HRT didnothing. Have been using estrogen cream for a couple of years. Does not seem to doanything, although I seem to heal quicker. Needless to say my husband and I do not makelove as often as we used to, as he does not want to hurt me. Is this really just an agerelated thing? We used to joke about making love in our 70's/80's. No chance. This startedafter the menopause. Tried reading about hormones, lutinizing hormones, folliclestimulating hormones - don't we all in desperation? Have had my fair share ofthrush/antibiotics/Diflucan/Nystatin. Can this be the root cause? Or is it hormonal? Butsome of you ladies are quite young, so how can that be? I am so sorry that you aresuffering so young. I keep meaning to go back to doc. but am always so busy (also feelthat the doc's have no idea after reading all these entries). Will keep reading andhoping. If anyone wants to email me please do.
CommentTO JANTAL: I tried to email you but it came back undeliverable. If you'd like to emailme back, please feel free. We're about the same age and having similar symptoms. Sue
CommentI'm hoping someone out there can help me. How can one differentiate betweenvulvitis/vaginitis and vulvodynia? I've been suffering since Sept. 2000. I think it all began with a change in laundrydetergent. I suffered from vulvar burning, redness, swelling, wetness, and urinary urgencyand frequency. I was misdiagnosed by 2 doctors as having a bladder infection despite nobacteria being found upon urinalysis. I was prescribed Cipro, Macrodatin, Flagyl, andDoxycycline. Of course, after all those I ended up with a massive yeast infection(diagnosed by an OB/GYN). The skin outside the vaginal opening became very red andinflamed and it was uncomfortable to sit, I experienced vulvar itching, and had anabnormal white discharge. He said I had "extremely severe" vulvovaginits. Heprescribed Diflucan and Terazol; however, the said to only insert the Terazol half-wayinto the vagina, which I did. The Terazol made the vulva feel worse so I was prescribed 3months of once-weekly Diflucan only. I have healed some. But, the doctor is still seeing ayeast infection. So, this week I'm trying Terazol again to kill any yeast that theDiflucan wouldn't kill. I'm halfway thru the 7 day regimen and I am already sitting morecomfortably. However, I still see a lot of vulvar redness, swelling, clitoral irritation,and some occasional itching and burning. Could my problem be primary irritant vulvitiswith a secondary yeast infection that was never completely cleared up? I saw adermatologist last week and he thought once I got rid of the yeast that the rest of theskin would heal with a little help from some hydrocortisone cream (I'll start using thatwhen I'm done with the Terazol). This has destroyed the life I loved. I'm wondering if I even have a correct diagnosis.I've been to 7 doctors, and yes, 2 of them have told me it was in my head!! A couple havebeen helpful, and a few uninterested at all. I'm feeling hopeless that I'll ever feel goodagain and be truly happy. Thanks in advance for any input.
CommentI have a mother who three years ago started have this constant burning and itching inthe out vaginal area and slightly inside.(age 75) She tells me she is very very red andirritated. She has tried everything. Been to many doctors. By reading this message board Iknow this is what she has. Does any one know of a Dr. that treats this condition in theClelvelan, Akron, Canton -Ohio Area. She is in constant discomfort. Thanks for you help.As a fibrormyalgia sufferer, I do understand about pain, and I hope they do find a cure orsomething to help you all with this vulvar vestibulitis . ML
CommentTo Frank who posted on 4/12- I just want you to know that I never said that any of usare deserving of this disease. None of us should have to go through it. But we do, andthere's only 1 person to blame. Needless to say, he/she has so much power why don't he/shejust take all our pains away? He/She doesn't care because otherwise none of us wouldsuffer. I do have a life and a damn good one at that! I just have bad days when I hurt.There is on reason for this at all! And to everyone else who voiced their opinions, I justwant you all to know that yes I do indeed belive in god, and that's why I'm so upset athim because he allows us to suffer and it's not fair! The only reason why I began to postin the first place is because some of us want to put the blame on society. But in reality,society isn't in control. God is and he/she can stop it but just doesn't want to. Thatmakes me very very upset. If you all want to continue to pray and you think he's actuallygoing to listen and take the pain away, then fine. I wish you luck. But I won't prayanymore it just seems a waist of time! It's been 4 long years and I'm still in pain. Somepeople suffered more than I have and that's sad to me. That's all I have to say about it.No more messages from Frank please. You don't even have a clue what we're going throughbecause you're not in our shoes. Your wife is but you're not. You told me to get a life.Why don't you get your wife a new life so she doesn't have to suffer anymore?
CommentTo Frank who posted on 4/12- I just want you to know that I never said that any of usare deserving of this disease. None of us should have to go through it. But we do, andthere's only 1 person to blame. Needless to say, he/she has so much power why don't he/shejust take all our pains away? He/She doesn't care because otherwise none of us wouldsuffer. I do have a life and a damn good one at that! I just have bad days when I hurt.There is on reason for this at all! And to everyone else who voiced their opinions, I justwant you all to know that yes I do indeed belive in god, and that's why I'm so upset athim because he allows us to suffer and it's not fair! The only reason why I began to postin the first place is because some of us want to put the blame on society. But in reality,society isn't in control. God is and he/she can stop it but just doesn't want to. Thatmakes me very very upset. If you all want to continue to pray and you think he's actuallygoing to listen and take the pain away, then fine. I wish you luck. But I won't prayanymore it just seems a waist of time! It's been 4 long years and I'm still in pain. Somepeople suffered more than I have and that's sad to me. That's all I have to say about it.No more messages from Frank please. You don't even have a clue what we're going throughbecause you're not in our shoes. Your wife is but you're not. You told me to get a life.Why don't you get your wife a new life so she doesn't have to suffer anymore?
CommentTo Frank who posted on 4/12- I just want you to know that I never said that any of usare deserving of this disease. None of us should have to go through it. But we do, andthere's only 1 person to blame. Needless to say, he/she has so much power why don't he/shejust take all our pains away? He/She doesn't care because otherwise none of us wouldsuffer. I do have a life and a damn good one at that! I just have bad days when I hurt.There is on reason for this at all! And to everyone else who voiced their opinions, I justwant you all to know that yes I do indeed belive in god, and that's why I'm so upset athim because he allows us to suffer and it's not fair! The only reason why I began to postin the first place is because some of us want to put the blame on society. But in reality,society isn't in control. God is and he/she can stop it but just doesn't want to. Thatmakes me very very upset. If you all want to continue to pray and you think he's actuallygoing to listen and take the pain away, then fine. I wish you luck. But I won't prayanymore it just seems a waist of time! It's been 4 long years and I'm still in pain. Somepeople suffered more than I have and that's sad to me. That's all I have to say about it.No more messages from Frank please. You don't even have a clue what we're going throughbecause you're not in our shoes. Your wife is but you're not. You told me to get a life.Why don't you get your wife a new life so she doesn't have to suffer anymore?
CommentPlease stop talking about God. This is the world wide web. There are people here formmany different cultures and religions. Each person has their own relationship with God, orno relationship with God, but at least their own belief system, and they don't need towaste their time reading other people's interpretation about God. Let's focus on thevulvodynia.
CommentOkay, back again today with some more helpful hints. Read on ladies: These are the mostreported irritants according to the Vulvar Pain Cookbook- coffee and tomatoes, althoughmoderate in oxalate, they are high in acid. Flare-ups have been reported mostly fromartificial sweeteners, citrus fruits, wine and alcohol, processed meats (deli), vinegar,and spicy foods (pepperoni and sausage are spicy). eat organic fruits and veggies (pesticides can cause pain), as it has further improved members. Be careful what vitaminsyou consume. In this case, natural products derived from plants increases oxalate.Oxalates are found in plants. Amway vitamins are known to be high in oxalate. Also, readwhat the excipients are on the capsule itself. Sometimes we don't think of that! Vitamin Caids the body's manufacture of oxalate. So it has been advised for low oxalate dieters tonot add that supplement daily. However since the vitamin c is crucial to the body, do noteliminate these foods from the diet, but consume them in moderate amounts. Ingredients onlabels are listed by volume. The ingredients listed first have the greatest volume. So, ifthere is an irritant at the end of a long list of ingredients, there is still a goodchance that it will not have enough oxalate to trigger a flare-up. Just be careful.Research has shown that supplementing with Vit B6, magnesium, dietary calcium, anddrinking a lot of water aids in lowering oxalate levels. but they have not helped all whohave tried them. Dr Solomons recommends trying foods in the low group first, until thereis a difference noticed. Then, start by adding one by one a food from the med group. Hesays to try the same food for a few days in a row and if there is no ill effect, it isprobably okay to add that particular food to your diet. Many find that over time, they areable to eat from a wide variety of things. SOME can even add coffee and tomato products.Well, that is it. I hope that this is helpful. Good Luck and stick to the diet!!!!!!!!!!!Talk soon-Laurel
CommentTo Anti Crist, God gave man free will. I think this condition is a product of ourenvironment, an environment manipulated by man and that the human body has not had time toadapt to. For example, my vulvodynia is not too bad at the moment but my pH level is alloutta whack so I have recurrent thrush now. God cannot lower my pH level. I can empahsisewith you. I've often pleaded with God to take my pain away but now i realise he can onlygive me the stength to cope with it and persist with finding something that will help me. I'm going to down the boric acid track at the moment. It sounds like this is not goingto make me worse at any rate. It is so much harder to find things people suggest here inAustralia.
CommentI have had vestibulitis for a 1 1/2. Finally found a good doctor. I have previouslytried everything, including Elavil. (She said that in her experience Elavil does not domuch for vestibulitis patients.) She performed a partial skinning vulvectomy on me. It hasbeen 6 weeks, and I am almost completely healed. The symptoms are gone. Another few weeksand the slight sensetivity of a scar will disappear too. I consider this a completeSUCCESS. There was a small are that was missed during the surgery, but my doctor took careof it 3 weeks after the surgery right in her office. I can now enjoy a normal sex lifewith my husband. I am very greatful to my doctor. I hope my story helps someone.
CommentI have had vestibulitis for a 1 1/2. Finally found a good doctor. I have previouslytried everything, including Elavil. (She said that in her experience Elavil does not domuch for vestibulitis patients.) She performed a partial skinning vulvectomy on me. It hasbeen 6 weeks, and I am almost completely healed. The symptoms are gone. Another few weeksand the slight sensetivity of a scar will disappear too. I consider this a completeSUCCESS. There was a small are that was missed during the surgery, but my doctor took careof it 3 weeks after the surgery right in her office. I can now enjoy a normal sex lifewith my husband. I am very greatful to my doctor. I hope my story helps someone.
CommentThat was truly a low blow that you said to Frank. He may not be in the pain that we arein, but he certainly had to suffer through the emotional turmoil that we have. You actlike you are the only one suffering, but YOU ARE NOT. Let's stop talking about religion,stop blaming God and others for this, and try to find ANWERS! This is ENOUGH!
CommentLea, Who was your doctor and where are they located?
CommentTo whomever posted about me acting like I'm the only one suffering. No that's not trueat all! I feel very bad for all of us suffering! I didn't mean to sound mean to Frank, buthe's the one that told me to get a life! I'm not blaming others. Everyone else seems towant to blame society. I never did. I said that if god wanted us not suffer, he'd take thepain away. But he doesn't. I have stop talking about this! Someone asked that I stoptalking about it and I did. But since you had to continue it and comment on it, I'm justletting you know what's really going on. You can get upset at me if you want, but thetruth is the truth and I told it like I see it. Don't message me back because I don't wantto hear what you have to say! I'd leave it alone for now. But if anyone else has somethingto say, then I'll continue voicing my beliefs whether you like it or not!
CommentI look forward to getting on the web, reading stories as well as sharing them. We areall in this together aren't we? Could we please focus on the disease and what we can do tohelp eachother instead of arguing over such petty things? It is a waste of breath andspace to those who have their opinions formed already. I am here to try to get well. Canwe please stick to the issue at hand? I hate to see us divided especially when the purposeof this guestbook is to bring us together. Thank You friends. Laurel
CommentHello Ladies I've had some catching up to do. Honestly I agree with Laurel the purposeof this site is to exchange info not talk about religiou beliefs. Since my name wasmentioned several times I'll comment and I hope not insult any further. When I read thepost blaming God I got angry and tried to be hurtful in response. I see people who have abelief in God as satisfying a need and what is the harm in it? I know it must be difficultfor an Athiest to keep reading God bless us and I'm sorry for the reference but it helpssome folks. If you really knew me you might not be as insulted by my thoughts and input.At age five I suffered a misdiagnosis which resulted in years of surgery and pain. Justttwo months before I got married I was hospitalized with an intestinal blockage andunderwent three major surgeries. I have lost a daughter to a genetic illness and last yearI had a kidney stone attack. I know physical pain, emotinal pain and suffering. I do notassume to know how you ladies feel and never will. I hurt for my wife and her pain , I amfrustrated by my own sex drive and inability to find an answer to this problem. I have hadtime when I have cried out to God and cursed God . Now I do my best not to give into theplacing blame and negativity. I do wish more was being do to find a cause and cure. Ithink the world is a big boys club with women and children at the bottom of list. Iunderstand your frustration with God and the lack of a miracle more than you couldimagine, I just did not think this was the place to denounce God. Sorry for beingunwilling to just let you vent. I hope you come to terms with your anger and do somethingpositive. Good luck and good life.
CommentHi everyone. I haven't posted in a while. Well it's been 10 1/2 weeks since my surgeryand I promised to keep you all updated on my recovery. Well I'm doing fine. But I must saythat I still hurt at the top part of my vulva. The bottom part wich is the vestibularglands have been romoved and I have no problems there. I noticed that about 2 days beforemy period til it ends is when I hurt mostly. I hate that! I do have better days but I havea feeling that this surgery was only about 78% successful and not 100%. But I still havetil about June to completel heal. Someone mentioned earlier that she had a partialvulvectomy 6 weeks ago and she's almost healed. 6 weeks is just when it begins to heal.You still have a couple more months to go. At least that's what my Dr said. He said ittakes 5 weeks to 4 months to heal. Anyways, I hate to rush it but I'm waiting for June toget here so I can hopefully be totally healed and do without the unessary pain. To theAnti Crist, I totally understand your frustrations. I just hope that you get better soonbecause I can tell that you are suffering a whole lot! I've been in your shoes and I'vegiven up faith at one point. But all I can tell you is that you're not alone and we allwill voice our opinions and try to help you anyway we can. Take care of yourself.
CommentOk, This is my rather lengthy introduction letter. I’m sorry it is so long, butI’m going to try and cover everything. My name is Christina. I’m 25 years old, from MN and I’ve suffered fromVulvodinia for about 8 years. Like most of the cases I’ve heard of, I really beganseeing symptoms after a chronic bout of yeast. Also, like most, I was taking antibioticsbefore this horrible yeast infection that began this nightmare for me. I have a history ofchronic rhinitis (year round allergies), food and skin allergies, Ichthiosis (a skinproblem like egsma), acid reflux, and irritable bowel syndrome. I am also bipolar(cyclothymiac manic depression). I’ve heard that many of these issues are commonlyassociated with Vulvular vestibulitus, which I have finally been diagnosed with. I haveseen many doctors for this. I have seen OB-Gyns, a specialist in bacterial vaginosis, andI am currently seeing a gynecologist in Wisconsin who specializes specifically inVulvodinia. I have also tried acidophilus, vitamin E oil, vinegar and baking soda douchesand baths, and just about every other homeopathic remedy out there. I started out bytalking to my primary physician about some deep pain I had started experiencing withintercourse. She suggested we try different positions and that I consider counseling. Itried both. I even went with Josh, my boyfriend and future husband, and bought a KamaSutra book. We found that there was only one position where I only experienced a minimalamount of pain. Not long after this I got another yeast infection. Again, it was as aresult of an antibiotic I was taking. This time it didn’t go away so easily. I wentto the doctor twice for yeast and was given a prescription. I went back a third time andhad a bacterial infection. I went back and forth like that for about a year. No matterwhat I was prescribed, the medication would never seem to completely clear up theinfection (of course this was because the problem wasn’t infections, it was vv, but Ididn’t know it at the time). Eventually I lost all interest in sex. My relationshipwith Josh deteriorated and he found someone else (at the time neither one of us knew whatwas wrong with me, Josh was much younger and not quite as patient as he is now). We brokeit off for about 3 months. I continued to take my birth control, Depo-Provera even thoughI had no partner sexually at the time. A side effect of Depo is no periods and no periodsmeant no incredibly painful menstrual cramps. In High School the cramps would get so badthat I would get light headed and throw up. I had a Diagnostic Laparoscopy 2 years ago andthey found no evidence of Endometriosis. When Josh and I got back together, I found thatthings had temporarily quieted down on their own. There was some friction withintercourse, but the deep pain, the chronic infections, and the burning where all gone. Ayear latter it all started up again. First came the sudden lack of natural lubrication,and then the deep pain. I continued to have some friction (like rug burn) with intercoursearound the vulva. Then I got sick with a sinus infection and found myself getting anotheryeast infection from the antibiotics. I had 2 or 3 yeast infections that where prettystubborn and then when it finally went away it felt as if it hadn’t completelycleared up. The burning with intercourse, urinating, and tight clothing returned. I begangetting cuts around the vulva with intercourse as well. At its worst I would have burningeven when I wore sweat pants if I would be walking or sitting for a long time. I wouldalso get this pinching pain that would just come from nowhere around the hymen area. Iwould go in and the doctor would diagnose me with a low-grade bacterial infection. Atfirst they kept prescribing Cleosin, then metro gel, then metroconezol for both Josh andI. I soon found myself going in and nothing would show up on the culture. At this point mydoctor didn’t know what was wrong. She suggested that maybe my body was stillrecovering from recurrent infections. She told me that Depo-Provera thins the vaginal wallmaking it take longer to heal. I said that that made sense, but that I still should havehealed by now. It had been over a year since I was diagnosed with any infection. At mynext yearly, I had an abnormal pap smear and my doctor referred me to an OB-Gyn for acolposcopy. No displasia was found, but I continued to see her to see if I could find outwhat was wrong with me. This is the doctor that preformed that laparoscopy. She alsoprescribed me Elivil for chronic pain. After seeing a few OB-Gyns, I was taken ofDepo-Provera and referred to a specialist in bacterial vaginosis. He diagnosed me withVulvodinia and considered Strep B to be the cause. He prescribed Keflex and Floxin. I alsowas given a lactobacillus compound to help replace the acidophilus I had completelydepleted. None of this seemed to help. Soon after I began seeing him, he lost his fundingand the office where he practiced cut his office hours back to make room for OB-Gyns thatwhere bringing in more patients. By this time sex was almost impossible. Eventually I hadto get my prescriptions by phone until he left that office. I would have to leave amessage and wait by the phone literally until he called up to a week later. If I missedhis call I would have to leave another message and wait all over again. It was veryfrustrating. Before he left I was able to get the name and number of the nearestspecialist, besides him. The closest doctor turned out to be 8 hours away in Milwaukee! Iwas so depressed this last specialist really had my hopes up and now he couldn’t helpme and the doctor who could was so far away. I became determined to find a way to makethis work out for us financially. I called the office of this doctor and found that thiswas going to be even harder than I thought. She doesn’t take insurance. She willsubmit claims to your insurance company for you, but she doesn’t belong to any PPOplan. I had to fight to have insurance pay for her visits in network based on the factthat she is the closest doctor who can help me to the Twin Cities area. If insurancehadn’t agreed to pay in network, I would not have been able to afford it. The tripitself costs us $370 for gas, food, co-pay, medicine, and an over night stay at a hotel.My first appointment was 3 ½ hours long. She is the most thorough doctor I have ever had.She told me to forget everything anyone else ever told me and diagnosed me with Vulvularvestibulitus and Atrophic vaginitis. The Atrophic vaginitis was caused by my Depo-Proveraand complicated by the antibiotics and the Acutane I took for acne. She was able toimprove the Atrophic vaginitis considerably by prescribing a vaginal estrogen ring(Estring), Estrace cream, and Temovate. She also prescribed Zoloft to replace the Elivil.I was also instructed to wash all my pajamas and underwear in special dye and fragrancefree detergent from the co-op. I’ve made sure to only wear cotton underwear and pjs.At my next appointment, she saw the improvement to the surrounding tissues in the vulva,but the vestibulary glands where still inflamed. I had a colposcopy with a Vulvular,vaginal, and cervical biopsy to look for any skin disorder, or malignancy. The testresults came up negative so she continued me on the same treatment. She told us to attemptsex again just before the appointment (we hadn’t had sex for 3 or 4 months). At mylast appointment I was still having problems with pain and inflammation in the glands, soshe has recommended surgery. She told me to give it another 2 months and if there was noimprovement to call in and schedule surgery, if I decided to go ahead with it. Hear 3months latter I feel worse then I did at my last appointment, so I have made theappointment. She told me that she has had better success with this surgery then otherdoctors because she removes the entire vestibulary gland instead of just removing the toplayer of tissue by laser, or just removing part of the gland. The whole process involvesremoving all of the vestibulary glands and the hymen. A vaginal flap will be createdanteriorly, and stretched up into the vagina as a graft. This is to prevent cuts and tearsduring intercourse. I will have to spend the night at the hospital and then 10 days inMilwaukee in case there are any complications. That hotel bill is going to be prettyexpensive! I’ve also had to take a 6-week leave of absence from work to recover.Thank God I’m part time! I wont be able to attempt any sex for 3 months. I have ahard time believing that I will actually be that healed up in such a short time. Myhusband will be coming with me and will use all of his vacation time this year on thattrip. I am so fortunate to have such an understanding man in my life. It has still been anawful strain on our relationship. After I have recovered from surgery they will have me dophysical therapy to help learn to relax my pelvic muscles once again. I will be learningexercises similar to what women learn after pregnancy. Has anyone had a VulvularVestibulectomy before? This whole surgery thing is scary. The very thought of surgery downthere makes me nauseous. My doctor has reassured me that she has never had anyone getworse after surgery (she’s been doing these since 1983) and that she has an 85%success rate. She also said that the surgery would not be disfiguring like some otherpeople have had happen. She said that the chances of success with me where better becauseI do not have a skin disorder, like Lichen Sclerosis and my pain is mostly on contact(with intercourse or urinating). I trust my doctor; she is the only doctor who has madeany progress with me. It’s just that I’ve had this a long time now and I havetried so many things. If anyone has had this surgery before I would really like to hearfrom you. What was it like? Was it successful? How well did you recover? Did it make youany worse? Has it interfered any with sensation or orgasm? Has anyone been out toMilwaukee for treatment? Any information or words of encouragement would be such help.This has been a great source of stress and anguish for me. My appointment is scheduled forthe middle of May. Thanx for listening, Christina
CommentHello I am feeling so terrified that I will go through life with this illness. I wakeup thinking about it, and I go to sleep thinking about it. It is awful. I am 30, in aserious relationship and I wonder how other people can stand this. I am sick and tired ofapplying estrace, etc... I sometimes doubt I am any better than last year when thisstarted. I stick to the diet, etc.. but who knows if that really helps. It is the worstthing. I have an understanding boyfriend but I am so depressed about this problem that Iwalk around so unhappy. This sucks! Lisa
CommentI feel for you. I wish the absolute very best for recovery, but can't help but thinkthere is an underlying condition, especially when it comes to excema and skin conditions.I have to believe you could perhaps have a hypothyroid condition and you should check thisout. Especially if you notice a lot of colds and upper respiratory conditions. The thyroidcan do nasty things, including clinical depression. it is believed that 50% of thepopulation has it, possibly more. I have read that drinking water can cause this (all theflouride!) and we should drink as much spring water as possible. Please check into thistheory. You can find a book on it by Dr Broda Barnes called Hypothyroidism: TheUnsuspected Illness and Solved: the Riddle of Illness by Stephen Langer, MD. You won'tbelieve how much it contributes to vulvar pain, and there are many women as bad as yourcondition who have completely recovered. best of Luck.
CommentIt is vital that you keep to the diet. Are you taking calium citrate? At first, ithelped me but after a while it burned. Ifound that it got to be too much and my bodyneeded it no longer. Also, if you do not eat enough oxalate per day, your pain willremain, so be brave and eat small amounts from the medium group. Take the OxAbsorb and trythe NAG or HTO. All together seem to relieve symptoms, but it can take well over a year. Isuggest you keep a journal of everything you ingest and chemical products used on that dayas well as supplements. Maybe you will see a pattern. Something is triggering this and youhave to be a sleuth. Keep posting and let us know what helps. Heat to the area is key.Invest in a heating pad. Best wishes, Laurel
CommentI went off birth control pills about 5 months ago, and already notice an improvement. Iam 42 and have taken them for much of my adult life. I also do the pelvic floor exerciseswhich I was skeptical about, but I can definitely say I feel better! I still have a lichensimplex chronicus which is relentless and am seeing a dermatologist for it. I have onespot right at the vaginal opening that splits open every time I have intercourse. I havetried everything, steroids, testosterone, but nothing is a permamanent solution. I wanther to inject cortisone directly into the area, but she's hesitant to do it because it'spainful. Painful!! Let me tell you about pain. I have had this condition for 2 1/2 years.I think I can tolerate 5 minutes of pain. It would be worth it. Why don't doctors listento what their patients? Anyway, I'm not cured by any means, but I do have improvement.Boric acid was also helpful, but I don't use it very much anymore. I knew the pill wasaggravating it, but my ob/gyn thought I was crazy. We need more research!
CommentAmen! Glad to see you back. Hope all is well with the family! And by the way, I thinkthat we appreciate a man's input on the subject. Even though you do not have thisparticular kind of pain, you have had your fair share, so I think that you can relate toour feelings. And we admire that you can get on here and let us know how you are doing. Iknow that my fiance copes very well, but I guess it isn't the "manly" thing todo to get on here and ask and tell. but I do have him read the entries which he does withno problem. I think that there should be more men willing to get on like you do and tellus what it is like to live with someone in our condition, so I hope that you will decideto stay for awhile. Welcome back. Laurel
CommentLaurel, I know that you said once before that sometimes stress could be related tovulvodynia, what about certain kinds of birth control pills? I changed to another kindbecause the first one I was on made me sick alot. Also, my periods are very light nowwhich my doctor says is fine. Should I be worried? Thanks for any comments.
CommentThank you! Someone mentioned having cortisone injected directly into the site of thetear. I've wondered without an answer yet exactly what happens to the skin that makes ittear. They say it thins out, is something like collagen lacking? I'm not suggestingcollagen injections just an explanation of what happens to the skin itself. My wife isforty-one and off the pill for two years her skin looks basically the same only now ittears during intercourse no matter what creams are used. I have to re-install AOL so I'llbe in touch.
CommentFor all of those with HPV-related Vulvodynia, do yourself a favor and try INTERFERONINJECTIONS. If the cause of your problem is genetic, the injections may also help byreplacing what is missing in your genes. This has been reported in some of the more recentarticles pertaining to the subject. Tell your doctors to look into the Weill/Cornellstudy.
CommentI'm back. I was just skimming over some of the latest entries, but mostly came on toput a thought in your head, to hopefully broaden the scope of your thought process. Ithink the majority of us beleve there is a genetic and immunilogical component tovulvodynia. Someone mentioned the study at Cornell, I conversed with one of the doc'sthere. They said that they had shown that with women with vestibulitis it seems that thenormal immunological response to a "trauma" for some reason does not turn offafter the trauma. The immune system stays hyped up, like it is still in the fight. I won'tget into my whole discussion with these doctors, and what I think...but I do agree thatthere is some sort of immune response going on for whatever reason. Could be childbirth,infection, chemical, etc. Anyway, it is reasonable to seek out a rheumatologist. There areimmunoligists, but I don't know if they see patients, or how many of them there are.Doctors will not think to send you to a rheumotologist, and before you make anappointment, I would fax a letter explaining why you are coming, and feel sure he/shefeels comfortable with the appointment. I had contacted Dr. Terentham in Boston once, hehas published before, and is research minded. He was willing to see me, but then I foundsomeone nearer to my home. Anyway, if you believe it is the immune system going haywire,and the aggravant is gone (I tend to believe the antagonist is still there, but you do nothave to agree with me) you might benefit from drugs that turn off the immune response likeEnbrel, or Celebrex. Rheumotologists know these drug inside and out, your GYN doesn't. Heis more likely to just give you the old stand by cortozone, which can have some badeffects. Another point to this immunilogical stuff is that I would be weary of"natural" stuff that is supposed to improve your immune system. Your system istoo hyped up, remember? You don't want to turn it on more? If you got a bee sting and hada severe reaction, and it continued for days after the sting...you would not logicallythink to ingest something that would turn on the immune response more! Frank, your wifes situation is interesting to me...usually I would reason that the skinis thinner because there is inflammation there. Consider disease like raynods andscleroderma (by the way these are autoimmune treated by rhuemotologists) The skin becomesless elastic, and more likely to crack...I just talked myself into a hole...actually Ithink there is NOT inflammation with these, but the skin is stiff, less elastic, andcracks easily...maybe that info can help you. Going back to my original thoughtinflammation can cause the area to be thin and tender too, and back in the middle years ofmy battle, I did have kenalog injected directly into my vulva. It did give me some relief,but my personal feeling is that I treated the symptom, not the cause. Hope I was not confusing up there, but I thought it important to write out my wholeline of thinking, especially since I kind of changed my mind mid way. It is important tobrainstorm, and have an open mind with these mysteries. Lastly, Frank, I hope I had not impied that I hate all religious things by suggestingthat people might be offending others, and sharing that I am an atheist. Certainly you cansee from my former comments that I think that each person's religious beliefs areimportant, and that I hope it brings good things to them and the people around them. Iagree with you, that I understand that when people tell me they will pray for me that theyare genuinely trying to help...to reach out...I have girlfriends, and a mother-in-law thatsay it all of the time, and I say "thank you". I should not have used this foremto try to explain my point-of-view on this. It is just that when I saw anti-christ'smessage I was so disturbed by her pain, her anxiety, her anger. Completely understandablefeelings. But she lashed out at people who find solice in God (I was trying to protectthem too) and I hate that her beliefs have worked against her. I am sure that if I wroteon here..."I am an atheist, you all are crazy to believe in God, how can you beleivein God when good people suffer?" People would go crazy!!! Well, it is the same to sayto me "God will take care of it, Pray to God, God only gives what you canhandle". I probably did not explain that well, and the very religious will never getit, because they just think I am simply wrong, and have not seen the light. AND JUST TO BESURE...THE WORDS AGAINST GOD ABOVE ARE JUST AN EXAMPLE TO MAKE A POINT. I WOULD NEVER SAYTHAT TO SOMEONE, I HONOR EACH INDIVIDUALS RIGHT TO THEIR RELIGIOUS BELIEFS AND AM NOTTRYING TO PERSUADE ANYONE TO CHANGE THEIRS; ONLY TO CONSIDER THAT THE WORLD IS MADE OFMANY PEOPLE. Very difficult subject.
CommentI think that there is enough testimony from women who believe that birth control pillseither triggered the problem or made them worse. Of course, not everyone has thatreaction, but if you think that there is a link, then by all means cease using them.Myself, I have a mitral valve prolapse of the heart (like a weak valve or murmur-notserious I am told). I attempted to take birth control pills in the early 90's and Iremember them making the heart race really bad. That is the only experience I have everhad with them, so I cannot speak for the others. Vulvodynia is my birth control!!!!!!!!!Well, that and an extremely irregular cycle. You mention that your periods are lighternow? Is that because you have switched to a different pill? Personally, I do not believein taking something for the body that is not meant to be there. it is like fooling withnature and look how unnatural our environment has turned out to be. It's no wonder we alldon't have cancer with all these preservatives and chemcals in the world today. I tellyou, the best thing I ever did was buying all groceries at a natural food store. It hasmade the v.v. better as well. I don't mean to go on, but if you have the ability to go offof the pills I would give it a whirl. keep posting and let us know. Laurel
CommentI thought I would pass on this item I found. It might be part of the reason some womenare experiencing the tiny tears. Hope it helps someone. http://thriveonline.oxygen.com/medical/womensdoc/womensdoc.01-12-99.htmlEstrogen stimulates the production of collagen, which provides the structural support ofthe skin. Skin collagen decreases in women after age 40. Additionally, falling estrogenlevels in menopause can cause a breakdown of collagen, resulting in laxity of the skinwhich leads to sagging and wrinkles. Additionally, the elastic fibers in the skin becomeless resilient, which decreases general skin tone. The skin becomes more fragile becausethe top layers (epidermis and dermis) separate more easily. This results in cuts orbruises from relatively minor injury. And because falling estrogen levels affect cellturnover rate, the healing time for these cuts is usually doubled.
CommentThe estrogen/collagen conection is very interesting. It might be true for some, butkeep in mind that women get cuts on their vulva who are young and have normal cycles.
CommentFrank I am glad you are back too! I love your input! It is so refreshing having a malerespond. Our husbands suffer, too. I hate to tell my husband I am in pain and can't. Hehates to make me suffer. We have always had a great sex life, and still do, but it is notpossible to be intimate as often. I am going to get over this! There has got to besomething out there that will work!. Each of us is different, but I think this comes froman allergy to something. Mine developed over time. It got a little worse each year untilit became unbearable. I am better, but not normal. I have been under extreme stress thelast seventeen years. I have a severely disabled child and the care of him has taken itstoll on me. I suffer from extreme sleep deprivation. I feel all of this has caused me tobecome allergic to things and develop vulvodynia. How about the rest of you?
CommentHi everyone, This is my first time writing in this guest book, although I have beenreading it for several months. I just wanted to share my thoughts w/ people who trulyunderstand - I have been suffering from vulvovaginal pain now for about a year and a half. Like manyof you, I have been on birth control pills, rounds of antibiotics for bacterial vaginosis,and bladder infections, and have used my share of yeast creams. My symptoms are thatitchy, irritated (and sometimes raw) feeling on my vulva, vaginal opening and rectum thatdoesn't seem to go away. I haven't had sex w/ my husband in almost six months becauseintercourse is too painful (vaginal opening and vaginal walls are sore). I have developedallergies as well - I seem to get eye infections more often. My periods have become verylight and my cycle has become irregular. I have also developed cervcitis and uterinefibroids since this all started back in 1999. I am so afraid that this, whatever it is,will never go away. That it is going to keep developing into yet another disease. I'm 28years old and want nothing more than to start a family with my husband and to haveenjoyable sex again. I can't remember the last time I felt really happy about something. Iam sorry for sounding negative, but I am just so anxious to be "normal" and geton with life. Has anyone else developed cervicitis (inflammation of the cervix), uterine fibroids orirregular periods? I do believe that for some of us, vulvodynia does create a hormonalimbalance. Or perhaps the hormonal imbalance is what started the whole thing? I amcurrently seeing a naturopath that says too much estrogen can have some of the samesymptoms as an estrogen deficiency. She has also stated that antibiotics can create an"intestinal dysbiosis" or basically an imbalance in the intestinal flora, whichunless it is corrected, the vaginal flora cannot balance. That usually means more yeast ormore bacteria overgrowth. Then more antibiotics . . . and the cycle continues. That's all for now. I wish you all the best of luck!
CommentI have been going to visit Dr. Hatch in Tucson. He is the only Dr. that I know of herein AZ that is contracted with my health insurance. I never had a problem with him, butwhen I had my surgery 10 1/2 weeks ago, they did a biopsy and told me today that I hadmild displasia. They didn't even check me for HPV nor for a ATYPICAL YEAST INFECTION. I'mpretty upset about that. I live here in Phoenix and his office is 2 1/2 hours from me. Ican't afford to keep driving way out there! Does anyone know of a good Dr. out here nearthe Phoenix area who specailized in our conditions? Dr Gordon Davis is here in Phoenix buthe's not contracted with my insurance. Anyone have any suggestions? How can we get theseDr. to run these test on us without them refusing to do so? This just upsets me! If I dohave an ATYPICAL Y E, or HPV I want to know about it! I want to be given the propermedication so some of this pain and discomfort will go away!
CommentIn reply to Lynn who posted on 18/4/200 seeking doctors in Pheonix area. There isanother excellent website that lists doctors in different areas particularly the USA.Certainly worthwhile checking out. http://www.vulvodyniasupport.com/medical.html
CommentHi everyone... Just to give you another update...I was seeing a dermatologist in NYC,Dr. Peacocke, who improved my condition greatly. She is also treating a friend of mine whoironically has vestibulitis as well, in fact she's had it longer than me, about 2 years. Ifelt much better after her treatment of cleocin and diflucan, and she also gives you boricacid after the antibiotic treatment, and possibly estrogen, if you need it. I decided toseek additional treatment from Dr. Toth in NYC because I am also trying to get pregnant,and it has been impossible for me with this condition. I believe that the dermatologist,Dr. Peacocke, is on the right track, but I also believe that it is possible that thisthing can be passed back and forth. I saw Dr. Toth about 2 weeks ago, and he told me thisis a bacterial infection that needs antibiotics...and that both me and my husband shouldbe treated. But specific antibiotics, and for the right amount of time. I am waiting forthe results of the cultures he did on myself and my husband to see what treatment he willprescribe. Dr. Toth advised me not to have any "semen" contact until he treatsus both. Since I have done this, I have very little pain or discomfort. (I was able toresume intercourse after seeing Dr. Peacocke.) If I have intercourse we use a condom. Ialso rinse with water after urinating. That seems to help. What my girlfriend and Idecided is that she will continue seeing Dr. Peacocke and I will try Dr. Toth's treatment,and we will see what happens. She is now able to have intercourse successfully for thefirst time in 2 years. And yes, my periods and hers have gotten much lighter...it has todo with this. To the person who was talking about the flora imbalance, I think you areright. It is a delicate system that can get upset when things get out of balance. I willkeep everyone posted on our progress...feel free to email me for more information.
CommentSue- I have had problems for over a year also and I am 30. I understand how you feelcompletely. I am never really happy anymore. It is impossible to explain our pain toothers since they don't understand how miserable a woman feels when she can 't enjoy hersex life at all. Sure, people say, "Oh, you can do other things". Hey, this is2001, and we women deserve to have pain free sex without any apologies. I have tried manydoctors and many products and nobody knows exactly what to do. Sometimes I think thingsimprove and then bam, pain again. I have major allergy problems and always have had them. I know there is some kind ofconnection. I feel like now my vulva is having the allergic reactions. Hang in there- believe me, you are not alone. Let's face it, the condition sucks and we owe it to ourselves not to give up! Lisa
CommentMore info.... When my biopsy of vulva tissue was sent to a specialist who specifically analyziesvulva tissue, it came back with eosinophils. Eosinophils are the immune response seen inallergies. For instance people with the itchy eyes and congestion from pollen...if youtook a biopsy of their sinus you would find the tissue full of eosinophils. Also,Smithkline never mentioned eosinophils, only the special lab did. Immediately doctors saidI was allergic to something. I didn't wear underwear under dresses for two weeks, I didn'tuse soap, blah, blah, blah. I also said that I found it hard to believe, because I am notallergic. I do have a few drug allergies, but have never noticed anything with soaps orpollen, or anything. Although I will say that once I developed the vulvodynia and thetissues were constantly irritated...all of a sudden things that were preveiously nonirritating were now irritating. I proceeded to have contact dermatitis test, and the allergy tests, and every singlething came back negative. Seems I was right...I don't have pollen allergies, or foodallergies, or dust allegies. I became disgusted and went to the NIH library of medicine. Seems eosinophils are seenin bacterial and parasitic infection too. All the Eosinophils showed was that there wassome sort of invader there, and that was the immune response I had. It is the same as youget a fever from having the virus that causes the flu, you also get a fever from havingsurgery. Same immunological response to very different things. Jennifer
CommentJennifer: I am the girl above that wrote about the Weil/Cornell study. My doctor at NY Hospitalgenetically tested me and sure enough -- I had the gene. I also have had HPV in the pastand had laser surgery. While the first 20 HPV tests showed no traces after the surgery (iwent from doctor to doctor looking for help), my specialist at NY Hospital gave me thelatest hyper-sensitive HPV test which presented a mild case. The interferon injectionsfollowed. Compared to the usual pain, the shots were NOTHING. As I said, anyone who hasthe gene or HPV should strongly consider it. I do believe vulvodynia has many causesthough - neurological, dermological, perhaps infectious disease as you say... But most ofus have had long periods of remission, which I don't think would happen with a bacterialinfection.
CommentI am fascinated by all the recent comments. I too suffer from allergies, especially inthe spring. i have just started taking allegra again and i am anxious to notice whetherthis might improve my vulvodynia. before i came down with this, i used to suffer fromchronic sinus infections, and occasional eye inflammations--i really think there might bea link. maybe my body overreacts to foreign stimulus? i do have bad flare-ups when i am under stress, which makes sense because my nervoussystem is so reved up. my doctor keeps telling me that anything i can do to relax and calmmy nervous system will help my body recover faster. i have found yoga, meditation, andmassage really useful in lowering the pain level, even though i have constant burning. LAUREL-- since you have been so informative about the Solomons diet, do you know wherei could find NAG? my pharmacist told me he would order it for me, only he has never heardof it, and so doesn't know where to look. does it have another name? do you have a bottleof it at home? i would appreciate it so much. To the person who mentioned Dr. TERENTHAM in boston, could you please tell me where heworks, and if possible, a number with which i can contact him? Thank you so much. Good luck to everyone, i am hoping for all of us. think about how strong we are!
CommentSusan, you have the gene that the Cornell study tested for? I was not clear if you weretrying to tell me that, or that you had the DNA hybridinization for the HPV. I want to saythat I think the genetice research is very worthwhile, and I believe that over the nextten years the breakthroughs in medicine will be fantastic, now that we have mapped out thehuman genome. If anyone is interested in reading about this part of science...go towww.Celera.com they are the leaders in this type of work, and there website has severalthings you can click on that explain genetics very well, and at a level we, non-sciencepeople, can understand. Back on subject. Assuming that you meant you have the gene for theCornell study, please promise the next time they test you for HPV they do hybridinization.No more lecture on that. You mentioned that it does not sound bacterial because it comes and goes...my responseis why not? Consider Syphillis....I copied this from the mmwr, "Syphilis is asystemic disease caused by T. pallidum. Patients who have syphilis may seek treatment forsigns or symptoms of primary infection (i.e., ulcer or chancre at the infection site),secondary infection (i.e., manifestations that include rash, mucocutaneous lesions, andadenopathy), or tertiary infection (i.e., cardiac, neurologic, ophthalmic, auditory, orgummatous lesions). " See when you get syphillis you get ulcers on the vulva, but ifyou wait long enough they go away, but the bacteria is not gone, it is hiding out. 20years down the road you go crazy from it being in your nervous system, or have cardiactrouble etc. Interesting right, that it starts off in the sexual organs and then begins towork it's way to other tissues and systems? Bacterias can probably do things we have noteven thought of. It has been a hypothesis of mine, and a doctor friend that bacterias which are passedthrough sexuall transmission possibly cause many "non-sexual" type disease, butthe mucous membrane of the vagina leaves women at a particularly vulnerable place in termsof acquiring infection...I will get off of this tangent. My point is that in general we think of the immediate symptoms of bacterialinfection...like my cut got infected, so the doctor gave me antibiotics and it went away,or I have strep throat, so you got antibiotics and it became o.k. Actually Strep is such agood bacteria to pick on. Rheumatic heart disease (thought to be autoimmune for years) wasfinally proven after years of research to be caused by strep! The medical people (whoeverthey are) had labeled this horrible disease as an autoimmune, because it seemed as if theheart tissue was screwed up for no apparent reason, now we know it is a bacterialinfection. Now, I want to make sure that I say that I don't think the only way to get an infectiondown there is through sexual transmission. BUT, if you have an infection down there, Ibelieve that it is sexually transmittable. I hope everyone understands what I mean. For D. I have to go through my stuff for the Dr. Trentham information. I movedrecently, and it will be a task. He was with The Deeconist something or other with BostonUniversity or University of Boston....does that make any sense? And to the person that think all of the problems she has are probably related...you areprobably right!! ALL SYMPTOMS COUNT!
CommentI have always ordered thye N-Acetyl Glucosamine from the Solomons'. Of course, once hehas teseted your urine and are under the treatment of him, you are now considered to bepart of his "pain project." From then on, he will have you try the calciumcitrate, N-Acetyl Glucosamine (NAG), the Ox-Absorb, and the HTO last (besides the diet ofcourse). I am sure that Glucosamine is available through a regular pharmacy, but thisparticular pill I am not positive about. I always have ordered it from Dr Solomons'Scientific Connections. I, myself am sensitive to it (it makes me nervous, but that doesnot happen to most), but most find it a source of great relief. I suggest you try it. Yes,I do have a bottle at my former work. It is local, so I will get that information for youand pass it on through here. I am not sure if it is the same as the glucosamine found instores. I tend to say not since it has to be ordered directly through him. I will keep intouch. Also, it seems to thicken the skin in the vulvar area, which is the problem thatmost of you seem to be experiencing. I will go there tomorrow and post tomorrow night.talk then, Laurel
CommentThis is the site you will want to access for Celerawww.celera.com/genomics/genomics.cfm
CommentThe doc who treated me did all sorts of testing in his own lab right on the premises.He found HPV when no one else could. If you read the Weill Cornell study you will knowabout the gene I am referring to (non-HPV related). For me, it was the answer. I do nothave a bacterial infection. My body got what it needed from the interferon and that wasthat. For sure my vulvodynia was not sexual transmitted, as it appeared at a time when Iwas not having sex for over a year. Mine all started when I removed a tampon that I shouldnot have been wearing to begin with. It was on the last day of my period and I had run outof panty liners. When I went to change the tampon I found that it was very dry and wasn'tbudging. So, like a dummy I pulled it very hard. That triggered the response... Since I ammissing the gene I was not able to turn off the response without Interferon. I owe my lifeto that doctor. If it wasn't for him, I would not have been able to meet my fiance. Good luck to all. I was only trying to help those who do not believe they have abacterial infection.
CommentYes, I know the gene you are reffering to. I have emailed back and forth with one ofthe docs doing the study at Cornell. I just wanted to be sure I understood what you meant.Are you all better now? I have not been reading the website consistantly, I probablymissed some of your entries. I am not trying to convince you yours is a bacterial infection. I just want women tofeel empowered to stand up for what they think is right, what their gut feeling tellsthem. You have very specific reasons for what you believe caused your vulvodynia, it seemsyou have done your homework. I want everyone to understand that the reason I go on and on about infection is because99% of the vulvodynia experts believe it is impossible that it is an infection, and forthe women that have a gut feeling that theirs is related to infection, I want to providethem with logical medical reasons as to why their gut feeling might be right. I know that most people do not read medical texts or journals because the medicaljargon is intimidating, or they have never been to a medical library. It is difficult forme also. I have a friend who is a doctor who helps me interpret the lingo, even though thevulva is not his specialty. He puts it in more lay terms and then I fit it together withwhat I know about my body and basic medicine. I think that is why so many people turn to the herbal stuff..they speak our languagenot medical language. There is so much about nature, genetics, parasites, disease that we don't know.Scarier...there is a lot that is known that doctors do not know about! Ask anyone that hasbeen through a long illness themselves or with a loved one, and that through the illnessit was the patient bringing in articles, and suggesting treatments the doctor was not evenaware of. It is frighteneing and disheartening to think that our health (the mostimportant thing to us) is in the hands of people who really do not know what they aredoing when it comes to vulvodynia. The truth is NOTHING has been proven. So, thevulvodynia expert that throws estrace and elavil at you is just as right as the one thatgives you antibiotics...because there is no concrete medical evidence. It is up to us toguide our treatment, protect our body, and do research. Frank said they are Gods, and many people do look to them as Gods, and many of themhave big enough heads to think they are Gods. As an adult they are the only other people(as a unanimous profession) I call by their last name with a title in front of it. Arethey really so superior to me? I should show so much respect? It has to be Dr. so-and-so?We are not talking about a custom in the South, or in your small part of the country...weare talking the entire group of doctors feel they should be addressed that way,immediately putting them in a place of authority. They should be our partners in healthcare, but they are the gatekeepers of health care. Don't get me wrong, I do have respectfor the years they study, and the the knowledge they do have. As I said my friend needs totranslate the difficult vocabulary for me, and interpret paragraphs sometimes, because Ido not have the education. BUT, do not look up to them so much, do not think that they areso omnicient, that you stop thinking and searching too.
CommentI have been reading for about a month. I have had all of the horrible symptomsdiscussed here for 3 years. I am 28. One thing that I noticed is that most write they feelWORSE during thier period. BUT I LOOK FORWRD TO MY PERIOD!! It is the only time that Ifeel "normal" and experience physical "peace." Does anyone elseexperience this relief during the bleeding and what do you think it means. I am tendingtoward some type of infection but I am open to ANYTHING that will help me cure or at leastmanage this "thing."
CommentThere are so many ideas for what causes, what helps, what makes this worse, etc., thatit can all become very confusing. I've thought about sharing some info that"seems" to have helped me, but didn't want to add to the confusion. But maybe itsupports some of Jennifer's thoughts regarding the bacteria link. I've had vulvodynia foralmost 3 yrs. I must first say that I'm MUCH better than I was when it first started. I,like so many of you, went thru severe depression w/this. But (and I must say this site hashelped me a lot over these 3 years), again I'm better. I'm not cured, but there arevarious things that provide symptomatic relief. Elavil has helped me tremendously (nothappy about the weight gain, but it's better than not being able to sit!), Lidocaine helpsif the pain is more than you can handle that day (temporary relief, but sometimes when itwears off, I notice that it's better than it was before using it), and Borough's solution.Go to your pharmacy and ask the pharmacist for Domeboro Solution; they usually keep itbehind the counter, but no prescription is necessary. This has provided great relief whenI'm feeling particularly raw (temporary relief, but it's an old time remedy for inflamedskin - it's very safe!) Okay, now to my experience regarding the possible bacterial cause.I had all but given up on intercourse, but obviously this is VERY hard on a marriage. Butthe last two times we had tried, I got some very bad bladder infections. And I'm verycareful - always urinate after sex, and had even rinsed w/water after tha both timest. Myhusband had a suggestion; put an antibiotic salve like Neosporin on thevulvar/urethral/vaginal area. For me, there was no problem w/possible pain due to thesalve, since we always use Lidocaine w/intercourse anyway. So we've had sex 3 times nowwith no UTI (bladder infection) following. This has greatly reduced anxiety in me as I'dgotten so afraid of getting another UTI, having to go back on antibiotic, and antifungalto prevent yeast. In other words, afraid of perpetuating the bacteria/yeast cycle that hadinitially caused my vulvodynia in the first place. I had no recommendation from a doctorabout doing this, so I don't know how good an idea it is. Who knows; maybe the salve isirritating, but you know what? Whereas I used to be very sore after sex since I've hadvulvodynia, I don't even have that soreness. And I'm not sore the next day. So I'mthinking the Neosporin probably isn't irritating (to me anyway), or I obviously would havesoreness once the Lidocaine wears off (and I don't!) Okay, so anyway, again I'm not adoctor, but if any of you have the problem w/UTI's following sex, you might try this. Ifyou're unsure, ask your doctor. Well, this got WAY TOO LONG (sorry). I've just beenreading Jennifer's theory and thought I'd submit my story, too.
CommentI have a recurrent yeast infection at the moment and when reading about it found outthat you can have an allergic rsposnse to the yeast which makes it more difficult to fightbecause you release prostaglandins which reduce your cell mediated immunity (Jennifer thismay also be linked to the eisonophils you were speaking of). So, I was just wondering whenpeople say their vulvodynia started with a difficult yeast infection do they think it wasthe infection it self that brought it on or the topical creams they used to try and getrid of it. Jennifer, do you have a reference or hyperlink for the Weir Cornell study. I would beinterested in having a look. Liz
CommentJennifer: As my old ER doctor of a boyfriend said, I hope some of you do NOT have a bacteriainfection and here's why: If there is some sort of infectious agent that no one can recognize lingering in oursystems, the antibiotics will only help for a few days and then probably worsen thesymptoms. The thing is, if they can't identify the bacteria they probably can't figure outwhich antibiotic to use, including which broad range one may work. The result is that themedicine may kill some of the weaker bacteria, thus causing temporary relief, but itleaves the heartier guys to divide and multiply and produce a stronger agent. Scarey! Ithink that this problem has occured in many patients, having been put on a variety ofbacteria fighting drugs. God I hope I am wrong. I am fine until I "reinjure" thearea, then my doc says that I may flare up again. Fortunately with those of us with thisgene, there are new arthristis drugs that may help. I won't know unless I try them if andwhen I ever have a relapse. Sorry for the poor grammar. I am typing fast because I haveguests over. I have all of my paperwork on file somewhere, so if you want me to put thingsin medical terms just let me know. By the way, when all of this first started(post-tampon) they did notice a high level of ecoli in the vaginal area (much more so thanusual). I think I used metrogel for that. I have the list of meds somewhere... Before Ifound my doc I took many, but nothing worked pre-interferon.
CommentAlways have pain during ovulation or the week or two before the period. But, the actualperiod itself brings relief for me as well. Also, a few years back, I thought I hadanother bacterial infection and my gyn said I had a lot of flora inside. He cultured meand we were both surprised to learn the culture came back negative! Of course I wasrelieved because the antibiotics had triggered this in the first place. He suggesteddouching with betadine. I can't help but think think that I have all of this florafloating around in there. Don't know if this has anything to do with it. Any ideas?
CommentHi! I was married to a woman with vulvar pain. She got it right before we married andduring our short marriage we did not have intercourse. I was a faithful, understanding andcaring husband. After many different treatment methods that did not help she finally hadsurgery removing tissue from the painful area. After a while, when the stitches were gone,she started cheating on me. And here I am, divorced. I was never able to have a normalsexual realtionship with my wife in our marriage. Now, as a result of her cheating, I havedeveloped a sexual dysfunction making it impossible for me to ejaculate duringintercourse. I can ejaculate no problem but not that way. It's all "up here"(pointing to my head). Women think it is them and take it personally that I don'tejaculate during intercourse. Anyway, thats my story.
CommentA few ladies mentioned allergies. Up until about 2 years ago my wife didn't have anyallergies to speak of , then she developed a terrible rash all over her body. Turns outshe is now allergic to shellfish and mushrooms. never had a problem with them before. Shehas also felt sex contributed to UTI and yeast infections. I used to be very defensiveabout the suggestion, I keep myself clean. Now I'm not as sure. Please excuse thespecifics but she would say everytime we have oral to gential sex I get a yeast infection.I know the mouth is full of germs so who knows could be. Lastly I was temped to put TeaTree Oil on my penis and fingers because it is a natural anti-biotic, however are alot ofthings that do not belong inside your vagina or mucus membranes. Out of desperation we aredrawn to try all sorts of stuff please be careful. P.S. To sleep deprived, I sure thinglack of sleep weakens your immune system. I hope you can stay strong for yourself andfamily. My best to you.
CommentFrank: Has your wife ever had a biopsy where the skin tear is? I've had vulvodynia for2 1/2 years. After 5 months I called my dr. and demanded that he do a biopsy of this areathat keeps tearing. Burning is one thing, an open wound is another. He did as I asked andthe diagnosis came back as lichen simplex chronicus which unfortunately does not have agreat prognosis. Sometimes there are multiple things at work here causing the discomfort.I now see a dermatologist for the skin condition and am hoping that she will do what iscalled an intralesional injection of cortisone. My husband is very supportive, but I amunable to have intercourse without the skin tearing open again. I just went through a 5month course of cortisone/testosterone treatments. They seem to help until I attemptintercourse, then the skin immediately splits again. My gynecologist is useless. Hedoesn't listen at all. There are other factors at work here. That is just one of them. Ialso am blonde and fair skinned, allergy prone and have fibromyalgia. My symptoms startedafter taking antibiotics for strep throat. Then the roller coaster started with cycles ofyeast and bv, more antibiotics, yeast medicine, etc. Sound familiar. As I said in anearlier post, boric acid has helped me a great deal and I still use it occasionally. Iwent out today and bought some of the ccc cream that someone mentioned earlier, veryinexpensive. I'll let you know how it works. Sometimes we have to resort to naturalhealing when modern medicine fails us. This cream has comfrey, calendula, and echinacia init. I also bought a vitamin/mineral supplement and evening primrose oil. At this point,what do I have to lose. To Jennifer: please keep us posted on your iv antibiotictreatments. Why don't other ob/gyn's test for this bacteria? I wish good luck and goodhealth to all!
CommentNAG is N acetyl Glucosamine and can be found at many websites. I personally get minefrom Webvitamins but know there are several other places. Just go to your favorite searchengine and type in N acetyl Glucosamine to find the various sites.
CommentThanks much Denise. It looks like Dr. Davis is the only Dr. out here in Phoenix. I suredo hate that! This is terrible! To the ex husband who got cheated on, that's a sad story. After being there for her allthe way, she did you that way! I'm sorry that happened to you. Maybe the next girl thatcomes along will be the right one. How long did it take for her to have sex after thesurgery if you don't mind me asking? It's been nearly 11 weeks since my surgery and Idon't think I'm even close to being able to have sex again. Of course I'm not in a hurryto do so right now. But anyways, how long did it take her to heal and all?
CommentTo Paula: Good for you for being persistant and getting the biopsy, wonder why the Dr.didn't do it on his or her own? You know our story so I'll spare the repeat. Suffice tosay I have been pleading to my wife to either see another Gyn or have some more testsdone, she is not motivated. She feels if something was happening her Dr. would notify her,good luck. She tears in the same spot either during sex or just moving the wrong way. Afew days later she is healed up and ready to tear again, it really bothers me, seriously.I'm a passionate lover and knowing I hurt her bugs me to no end, really takes so much outof the moment. Enough of that,I will suggest the biopsy. Thankyou for the concern.
CommentAussie Sufferers, If you are unable to find a doctor who knows about vulvadynia and related problems getin touch with the Manly Sexual Health Service (Sydney, NSW). Dr. Law does a lot of work inthis area and has an information sheet (4) which she will provide to your own doctor ifyou are unable to see her personally. Phone No. for enquiries is 02 9977 3288. Hope thisis of help. When I contracted this awful problem, I too did the "rounds" ofdifferent doctors and was treated for UTI, thrush and goodness knows what until my GPfinally decided it would be worth a try to see Dr. Law (thank God he had heard ofVulvadynia but it was awhile before he told me that this might be my problem!) I am sure Icontracted it after wearing generic brand panty liners some 5 or so years ago and havesuffered on and off since then. I suspect that it is now exacerbated by HRT ( the docsdon't really agree saying that HRT is used to treat symptoms relating to vaginal andbladder problems.) At the moment I am OK providing I stay away from intercourse. Not avery satisfactory solution. Good luck everyone and I feel so sorry for the ones sufferingbadly. I have burst into tears in the Docs office from the pain but I still don't thinkthey realise how bad it is.
CommentLet's see here: I am not sure how long before she was able to have sex after hersurgery but it must have been around 6-9 months. After all, she had sex, just not with meand I don't know when her affair started.
CommentI have only known that VULVAR VESTIBULITIS was what my problem might be for about 3days now. I have found myself in tears reading all of the various web pages and postings.I have been dealing with my symptoms for over 1 1/2 years. I started having pain during intercourse about 1 1/2 years ago...but it wasbarable...usually it was only bothersome AFTER sex. It would burn, sting, and hurt tourinate. But as time has gone by, it is has gotten so much worse. Now it is at the pointwhere I can't even have oral sex because I am too sensitive. And penetration is totallypainful. I have seen 3 different doctors who said I just had a bacterial infection and gave meantibiotics. I finally stopped going to the doctor because they weren't helping. Istarting seeing a naturopath about 3 months ago but she is just as clueless. She has hadme do vinegar douches, vaginal inserts with tea tree oil (which made things worse), andcutting wine, beer, chocolate, sugar, and white flour out of my diet...but she is stillclueless. But after reading all of these postings and information on other sites, I amalmost positive that this is what I am dealing with. Also, I have been reading about the low oxanade (?) diet where you take out things likespinach, sweet potatoes, nuts, etc. These are all the things she has told me I SHOULD eat! I am in Seattle, WA and am wondering if any of you know of any specialists in thisarea. I don't even want to waste my time with my naturopath or my PCP. Sorry for the long message...but I am just so relieved that there might be ananswer...but also really scared that there may be no cure. I have been with my boyfriend for two years in June. We are talking aboutmarriage...but I know this is all so hard on him and on us. Any information you can sharewould be much appreciated by both of us! Thank you!
CommentThank you so much to the people who wrote in about NAG. how often does Solomonsrecommend that you take it? Another question I am confused about: I have burning all day around the vaginal openingin the vestibule. Is this a combination of VVS and Vulvodynia? I know it is not PudendalNeuralgia since different nerves are involved. Could surgery work for a case like minewhen I feel burning all the time, albeit localized? Or does surgery work only for womenwho have pain strictly during intercourse? I have read a lot of the literature, although Istill remain uncertain about this point. Also, has anyone felt worse after acupuncture? I had three sessions and got a terribleflare-up. I know it might just be a coincidence, and yet I thought maybe it reved up mynervous system in the wrong way. Thanks again!
CommentSusan, I agree with your ER doctor that antibiotics are not to be played with. He wasdescribing to you avery serious issue. That bactarias develop resistance. This is a veryreal problem. I personally do not take antibiotics without a real reason. I never takethem for colds flew or sore throats, unless I have a culture come back, or green mucous,etc. In fact the first four years of my vulvodyna, I fervently believed it was a bacterialinfection, but since everyone said my cultures were normal I did nothing. I have relativesin the third world and easily could have tried antibiotic after antibiotic. That being said, your "worry" about taking antibiotics given by all of thesedoc's is exactly why I think the IV treatment is so important. My belief is that all ofthese women are being given a dose of antibiotics that helps them feel better because itkills off part of the infection, but does not do the entire trick. Boom!! Sick again! Youfriend is reinforcing my case to make sure you are getting enough antibiotics. The trickis that you also have to get the right one. My solution is not black and white, there aremany shades of grey, and some trial and error. But, remember this is not like someone whohas a cold (virus) who takes antibiotics even though they will not help at all. This iswomen who have been through all sorts of treatments, some horrible, that have been sickfor a long time, and who can possibly say, "you know when I used the cleocin I feltcompletely better." I am not saying everyone should run out and try antibiotics, I amsaying that the ones who have good reason to believe theirs is infectious, should thinkabout going for the big guns. Susan, I like that you are curious about this, and asking doctor friends. It is such apleasure when we can talk to doctors in an open setting outside of the "doctor'soffice" I am very interested in your comments. Frank, here is some interesting info that I really don't know what to make of. One ofthe bacterias that was found in large quantities in my husband and I by Toth wasProvetella Bivia. This naturally occurs in the mouth. You see P. bivia infections (you canhave a bacteria, but not necessarily an infection, the numbers need to be high enough) ingum absesses and sometimes from licking a wound. Further, studies done on Provetella biviashow that when other anaerobes or aerobes are added the P. bivia for some reason spurrs onincredible growth of the other bacterias. Soem sort of crazy synergistic thing. So, then Ithink about oral sex, and how if you have good bacteria in your vagina, the oral sex wouldprobably help the good stuff grow. But if there was bad stuff, for some reason, it wouldhelp that grow. Or, just that some how there is an interaction. I don't think it is theoral sex alone, but a combination of things. This also goes back to why maybe antibiotictreatments seem to not work for most. Maybe we are killing off the bacteria that gives uspain, but not the one that spurrs on this excellerated growth. So, on the antibiotic wefeel better, but it did not take care of the whole problem (maybe actually two or morebacterias, some of which we do not get pain from). This is all stuff in my head, exceptfor the studies I mentioned. They were found on medline just put in Provetella bivia, ifyou want to seek those studies out. It is very complex, many possibilities. Have a good day, Jennifer
CommentI wanted to respond to Frank. Frank, you mentioned that your wife believes there is acorrelation between oral sex and yeast infections. She is very right. I am suffering froma chronic yeast infection that I can't get rid of. On one of my many doctor's visits, myhusband came with me. My doctor asked to see my husband's tongue. Turns out yeastfrequently grows in the mouth, and my husband was probably contributing to my problemevery time we had oral sex. My doctor recommended having my husband use Listerine beforesex to kill any yeast in his mouth. Do you ever have a white coating on your tongue? It'sprobably yeast. If the yeast is bad enough, you can always ask your doctor to prescribeliquid Nystatin to swish with. I also wanted to mention that I am having the same problemswith antifungal medications that Jennifer has mentioned with antibiotics. I've triedDiflucan, Nizoral, Lamisil, and Nystatin. I've felt better everytime I use the drugs, butI can never convince my doctor (or my insurance company) to keep me on the drugs longenough to completely kill all of the yeast. So now, 3 years later, I must have somekiller, drug-resistant yeast because it isn't even responding to the drugs that used tohelp. I don't know what to do anymore. It's incredibly frustrating, not to mention ruiningmy sex life. Anyway, I just wanted everyone to be aware that yeast could be the culpritbehind some of your problems just as easily as bacteria.
CommentTo Jennifer: Very interesting reading, I'm aware of high bacteria found in the mouth.I'm not familar with the specific strain you mentioned but was anything done to suppressit? In other words can you take steps such as rinsing or something else. I brush , flossand use a mouth rinse prior to being close to my wife. I know that bacteria flurish veryquickly and many are necessary to insure good health so we should not look to eradicateeverything. I read alot on this stuff. My 13 year old daughter has been on severalanti-biotic for sinus etc. and I'm always arguing with my wife that we don't know the harmbeing done. I feel we should try our best to build up our own immune system and avoid themeds. I'll research some more, thanks for the insite.
CommentFrank, I don't want you to become obsessed with the mouth bacteria thing. I think JenB. wrote that you should check if you have a white coating on your tongue, and I agreewith her. I also think it is prudent to brush your teeth before you do the oral thing.But, this bacteria lives normally in the mouth. It does just fine in the mouth. it is likeE. coli is just fine in the intestine, but not in the vagina. I think that it is acombination of things/bacterias that cause the problem. I try to post all of this info toshare what I have read, and to help us evaluate the complex problem. I hope you know thatI was not trying to imply that your wife suffers because of you, or anything even close tothat. Frank, I don't feel sure your wife has a yeast problem. I know I am repeating myself.Yeast infection is usually whiteish discharge that is clumpy like cottage cheese. If thedischarge is watery or smooth like white icing, that is not yeast. Actually, normaldischarge should be a little slippery, and at ovulation there is an abundance of it, likeraw egg whites. You probably know this already, I am not trying to be condescending, likeyou don't know, but I think this is above and beyond what the typical male would know. Recently a women posted that she was fair. This was talked about a lot when I first wasresearching vulvodynia. I too, am very fair, blue eyes, brown hair. I still say this goeswith my infectious theory, because: 1. no matter how liberal we are today, white peoplegenerally sleep with white people, and if there is something passed around amongcaucasions, then more and more caucasions will get it. 2. Very probably we are from similar areas of the world generations back andgenetically our immune systems are similar. I am Latvian, Austrian. Just because ourgenetics cause our reaction to whatever trauma has happened (chemical, bacteria, physicaltrauma) does not mean we are to blame our genetics. Look, there are people who smoke for50 years and never get lung cancer, and then some smoked for 35, and never made it to 50years of smoking because they developed lung cancer. I believe that is genes. No one inthis country is talking about finding a way to genetically alter people so that they cansmoke! I say figure out what made the immune system kick up in the first place. I knowthere are people here who have vulvodynia from surgery or labor that are in a differentcategory, although I have to sneak in that you should remember that childbearing changesthe flora of the women tremendously. And, I do think that there is a possibility that antibiotics could cause this, if itallows bad stuff to grow, and suppresses good bacteria. BUT, if you had"infections" down there, and that is why you took antifungals and antibiotics, Isay the antibiotics did not cause it...you already had it. 3.
CommentFrank, yes I was treated with Clindamyacin (also called cleocin) IV for the P. bivia.Clyndamyacin is frequently prescribed by doctors in pill form for tooth absesses.
CommentThere is more I forgot to write... It has been argued, and Toth believes this, that anaerobic bacteria are much lesslikely to develop resistance that aerobes. When doc's prescribe for vaginal infection itis usually drugs that attack anaerobes, so if they are right, we can all feel a littlebetter about that. Frank, forgot to talk about the sinus infections. I know that can be a difficult thing.Sinus pain is awful. I know an ENT, who said that some doctors take kids that get chronicthroat infections and hook them up to IV antibiotics, and some do tonsilectomies. Thetendency is to just go to surgery. It is like getting a vulvectomy, they just want to cutaway the part of the body that is reacting. I don't mean to critisize people that have hadvulvectomies. I do know people that feel their surgery was "successful" eventhough the result was not perfect. But, it saddens me so that women mutilate their bodies,I completely understand being desperate enough to do it. So, the sinus infection thing is so similar. Does he behave badly and mope around? Ishe uncomfortable all of the time and then it is much worse sometimes. Bad enough that yougo for another round with antibiotics, which seem to work, but do not get rid of the wholeproblem? Are you 100% sure it is not an allergy? They found that chronic sinus sufferershave an abundance of mold in there sinuses. It is possible that non-sinus sufferers haveit present as well, but just don't react. The thing is they were surprised to find this(wish I could direct you to that exact study. I also wish I knew the name of the molds). Ialso know that one of the things Toth cultured in me was A. meyeri. I know I spelled thatwrong, I can get the spelling if you want it. It is a mold like bacteria that is very hardto kill off. You need weeks of antibiotics orally. I have no idea if this is a akin towhat lives in your son's sinus, but I am just thinking out loud. Anyway, that particularinfection of mold like bacteria I had is seen in women that have IUD's. Goodness knows whyI had it. My bet is that your son has never had his sinus cultured (and I don't recommendit) and the doctors are just guessing with antibiotics, and possibly the same crap ishappenng to him, that is happening to many of these women. Ugh!! I made some asssumptionshere, so straighten me out if I am wrong.
CommentJennifer, You seem to have done so much research and some of which is very interesting.Do you suffer w/ both vulvodynia and vulvar vestibulitis? What methods have you used, andwhat doctor do you see. I have been to several and have not gotten any relief from any ofthe burning. Thanks.
CommentI definitely have all the symptoms of vulvodynia. I am 26, and have had the symptomsfor about 5 months now. I live in Canada (Ottawa, ON) and doctors have done nothing forme....I have seen many and have tried steroid creams, etc. but have been told that thereis nothing anyone can do. I am going crazy. I have two questions that I would hugelyappreciate replies to. First, this all started after my boyfriend of 5 years told me hecheated on me (we are broke up now). I can't help but think there is some relation - maybepsychological, but the pain feels very real. Secondly, does anyone know of any doctorsthat are familiar with this disorder in Ontario? Thank you. This web site has been veryuseful.
CommentTo Jennifer:You are very bright and motivated. No offense taken, Lack of personalhygene or infection can easily contribute or cause infection to others. I take what stepsI can to lessen the problem. I saw a health program that showed the treatment of mold inthe sinuses. I also saw and taped a T.V. program which said anti-biotic for sinusinfection were useless. My daughter is thirteen, stays up late doing homework, doesn't eatproperly and plain doesn't take care of her health. I try to point out what I believe isthe problem but I'm just annoying Dad. They'll figure it out eventually. I'm also aware ofthe different vaginal discharge. Us guys are part lover and part science detective. I'veseen the classic cottage cheese and the milky discharge. This is such a personal subject Ilike the idea of exchanging info and possibly learning but I hate the sensitive subject.By the way the only place I have ever had IV anti-biotic is in the hospital, how did youmanage?
Commentjennifer: I'm sorry that I have not read all of the old posts. Are you pain free from after usingiv antibiotics or are they still testing various kinds?
Commentjennifer: I'm sorry that I have not read all of the old posts. Are you pain free from after usingiv antibiotics or are they still testing various kinds?
CommentFrank, it is your daughter, not a son, I think I screwed that up? I think it would begreat if you could get your daughter to see that she should do more for her health ingeneral, but you are right...you are just annoying dad. Difficult person to be. You knowthe story....parenting is a thankless job, blah, blah, and every parent feels frustratedlike you, that they want to help their kids. She is at an age that is very difficult, andthat she wants to push you away is something to be celebrated. She is becoming anindependent person, and we all stumble through adolescence, hurting our parents andhurting ourselves every so often. I did the IV at home. Toth does a kind that is administered in a steril environment,and the catheter is longer, so it can stay in a long time. Once a day, I change dthemediction. It was uncomfortable having the IV, but not painful. Jenna--you are prime example of my theory!! He cheated on you, picked up a badbacteria, and now you have this! I always say that if you started this pain with a new sexpartner you have a solid reason to think it is infectious, and you had a new sex partner(indirectly). I'm sorry he cheated on you. I can tell that you are very upset. Also, Icannot be sure he gave you this (obviously) but I think it is reasonable to think he mighthave. We all hate him! Even if you did not get this awful vulva pain from him, we stillare all mad at him for you! Susan, I am better. I had an IV back in June, and I seem to be "all" better.I no longer have redness, which was deepest at the entrance of my vagina, I do not havedaily pain, I do usually still use a little lubricant for sex, and I do not feel aselastic or ready as I did when I was 16, but I don't have painful sex, I do get a littleirritated during menstruation if I don't use tampons. I consider the IV a success! I hadbeen diagnosed with sclerotic tissue, looked like beginning states of lichen schlerosis,or was it planus, I don't remember now, and now I feel fine. I thought for sure after 8years of this redness and pain on my vulva that I would not be able to reverse the tissuedamage, but it seems most of it has reversed, I am very happy with that. About the lichen planus, lichen schlerosis, blah, blah. What the hell does thatdiagnosis get you? They don''t know what to do for those either. I desperately wanted acorrect diagnosis, and then I let go of that after 7 years. I realized that having adiagnosis meant nothing, because I was hell bent on the fact that I believed it was abacterial infection.
CommentFrank, I forgot to ask what did that mold in the sinus program say? I don't know muchabout it, I just thought it would be useful for you, and you could pursue the research ifyou wanted to. DO they have a way to try to kill the mold?
CommentTo Jennifer: The sinus procedure is in office surgery to remove the mold. Did not seemtoo bad and the results were great. I did mention to my wife that one of the ladies on thesite had a biopsy done of the tear and got a definite answer. She is not thrilled at theprospect of having a biopsy or getting a answer if it does not provide a treatment. I seeit as one step at a time, first find out what it is or isn't. I can accept inflamed nerveendings causing pain but why the skin thinning and tearing? What causes that? I don'texpect an answer anytime soon but someday I hope we will know. A quick word on thecheater, it wasn't until I started working that I realized what a great Dad I had. Thereare so many guys who are unfaithful and see no problem with it. They just don't get it.The vows, the exclusivity. I told my wife I would never disrespect myself or her by doingthat. End the marriage first then start over. But that's just my value system. I hope tomake an example by which my daughters can judge. Sorry to get of the subject.
CommentAnn, I forgot you. I had tried everything during over eight years of vestibulitis.Elavil, Prozac, estrace, kenalog, kenalog injections, diet, all the typical. I will admitthat the injections helped for a while, but I view it as treating the inflammatorysymptoms, unstead of the cause. Most of the "vulvodynia docs" will give you thesame stuff, so hopping round and round to bunches of them i snot reccommended by me, butthen who am I? Almost every women on this website can tell you...elavil, estrace, skinseems thinner, use lubricant, try to relax, try low oxalate diet. Didn't need years ofeducation for that. Understand that I think it is worth while to go to a doctor to getcertain things ruled out. We should all be sure that it is not cancer, or an obviousinfection that actually cultures, etc. I do not mean to turn your back of medical doctorsaltogether. Lokk, for all of my HATE, and I have a lot of it towards the medicalestablishment, and my disgust with the lack of research, and my saddness that the currentresearch is not researching my hypothesis about bacterial infection, I still think thatscience, medical science, will give us the answer. I have written before that I am veryweary of the herbal/natural theories. I do not mean to say that everything natural iswrong. Aspirin is from tree bark, and many of th emedicines we use today are derived fromnature.
CommentOprah's show today was about lack of sexual desire. Of course the word Vulvodynia nevercame up. They talked about low testosterone levels, psychological issues, low libido ingeneral. So for those of you who are counting on Oprah to get the word out, I think we canforget about it!!!
CommentSome of us are new to this disease and to this website. I don't want to be a pain, buta lot of the messages lately have been pretty negative. That is difficult to take on somedays when I come to this page for support and a little bit of comfort. Let's keepsupporting each other and try to stay positive!
CommentIs anyone also an HSP - Highly Sensitive? For those of you who have never heard of thisyou might be laughing...but if you are an HSP I'd love to know. I am and I can't help butwonder that there is some sort of physiological connection to my pain.
CommentJust curious about the person who posted that people are being too negative...was thatjust pointed at the Oprah comment, or about all of the different science stuff, and mynegativity with the current vulvodynia doctors? I don't want to be negative, although Iknow some of my message is. What I want is for women to empower themselves and to thinkindependently. I hope that message comes through, and I am sorry if that message isclouded by some of my angst. Frank, when I asked about the mold, I am not looking for a long explanation, this is avulvodynia website, not a sinus website. I do not have anyone in my family who suffersiwth that, so I am not familiar with the sinus stuff...just that I seem to absorb medicalinformation (it sticks with me) that is how I knew about the mold findings, even though ithad nothing to do with me. I have a new girlfriend, and a co-worker that suffer with sinusinfections, so just wondering if there was a specific cure, or vague health related stuff?
CommentFrank I had completely missed the posting you wrote about the mold treatment, and yourwifenot wanting to do tests etc. I agree with her, remember I said I do not recommend thebiopsy. Very invasive and probably they will just give diagnosis that will mean nothing.She has a pap smear every year, and that would find HPV on the cervix, and I would be waymore worried about that, then HPV on the vulva. Again, I do recommend at her yearly check up the mycoplasma culture, which is justanother q-tip, when she is already having q-tips stuck in there anyway. Frank, it becomes very difficult to continue the fight. She will have to do it in hertime. The wonderful thing is you are gathering information and working as a time, and ifin the future she is ready to try a new treatment, your knowledge will help her. All ofthe work you are doing now will pay off, I know it!
CommentDuh! forgot my name on that last posting, and made a bunch of typos. I have to go eat,talk to you guys later.
CommentI just want to know are there any women out there that has just had surgery within ayear? I want some answeres as to how to deal with the healing process. I have a lot ofgood days now, but there are days when I still hurt. It's usually a couple days before myperiod and whenever I eat food. I'm not on the diet, but I do try to eat as healthy as Ican to avoid being in pain. Anyone out there? Is there anyone who lives in or near thePhoenix area that wants to be friends? I want to have a freind that I can go out and havefun with and not have to worry about getting upset at when I begin to hurt.
CommentRE: Oprah's show Looks like Part 2 of the show will be on tomorrow and I was told thatthey do mention Vulvodynia. I am planning on taping it tomorrow while I am at work. Willanyone be around to watch it?
CommentOkay, I know that I have been writing about the thyroid-fibromyalgia connection and howI have come across 2 doctors who strongly feel that it is a hypothyroid condition that isimproperly diagnosed. just a note to those who suffer with fibromyalgia as well as v.v.. Isaw the most amazing doctor today. Although I have been complaining about the fatigue foryears (amongst many other symptoms including vaginal pain and irregular periods-yada yadayada) the blood tests for the thyroid kept coming back negative (incuding the mostsensitive one the TSH). He treats based upon symptoms, not lab results. Well, anyway, I amhypothyroid just as I suspected (and angry that I have had to suffer all of this time).And he could actually feel the goiter in the neck when noone else could. This man isKenneth Blanchard, Newton Wellesley Hospital, Newton, Ma. I begged to see this guy as hewas booked through September! I start my thyroid treatment tomorrow and says that within aweek or two I will show marked improvement. he also treats using both t3 AND T4. I havechronic fatigue, hypoglycemia, irregular cycle, chronic lower back pain, freezing, vulvarpain, the works. While he is not positive it will get rid of the vulvar pain, he says thatthe aches and pains WILL subside. it gives me new hope. I hope that my vulvar pain willfurther improve over time. Dr Blanchard strongly believes that a thyroid condition hasbeen misdiagnosed as Fibromyalgia. I have read two books on that theory and could notagree more. So, ladies if you have fibromyalgia, please look into this theory if you thinkthat there is something more to your condition. I have posted this in hopes that I canhelp even if it is one person. I have read that hypothyroidism can cause vulvar pain, so Iwill let you know if I improve over time. Please never give up on yourselves. If you thinkthat your doctor is wrong, then find someone who WILL listen. I am just sad that I havehad to live with this (vulvar pain) since 1992. I am better with the help of the Solomons'but can't help but think that if I were diagnosed sooner with vuvodynia, I would have hada better chance of recovery. For the woman who asked about the NAG, I was at myappointment longer than I estimated, but promise to get that info for you tomorrow andwill post. Thanks for listening and don't give up!!!!!!!!!!!!!!!!
CommentLaurel, What medication are you being given to treat your hypothyroidism? I have had my throidcondition for 7 years and my vulvar pain has not improved. After reading all of the postedmessages about the thyroid/vulvar pain connection I am wondering if my medication isn'tworking correctly. Please keep me posted on your thyroid situation. Thanks!
CommentI have been given Synthroid just to last me for 2 weeks as he ran out of the Levoxyl(sp?). After my blood tests come back, he is actually going to have my dose compundedespecially for me. I will be getting some information in the mail. Also, he sees hispatients every three months and tests the blood levels. Most doctors treat with t4 only.Dr Blanchard feels that t4 only (it turns into t3 in the body) will yield the same resultsas not treating the hypothyroid. He keeps the t3 and t4 levels exactly the same. Hiscompund is a mixture of both depending on what my blood tests will show. Also, if you takesynthroid, he only issues it in 25 or 50 mgs, as anything higher than that containsfillers and dyes and many have allergies to it. Very smart man. I really hope this helpsme. If you have shown no improvement are you following the low oxalate diet? What otherpills do you take? Just curious to know as I want this to work out for me. Thanks-laurel
CommentThere's been alot of talk on this guestbook about allergies and sensitivities. So, I'lladd my two cents! I was diagnosed with vulvodynia in 1994 at 28 years old (started with SEVERE yeastinfection, which was VERY UNUSUAL FOR ME. I NEVER used to get yeast infections at all.). I ALSO have allergies, but not the "normal" kind that you think of likegrass, mold, or pet dander. I have CHEMICAL allergies. I have severe reactions from thingslike perfume, cigarette smoke, household cleaners, things like that. I have read that ayeast overgrowth OR fibromyalgia can cause these types of sensitivities, so the plotthickens! I have been on oral anti-fungals, but probably not for long enough to make adifference if yeast truly does play a role. Lately, I have been developing other symptoms,like tingling and numbness, which I'm told CAN ALSO BE caused from YEAST OVERGROWTH orFIBROMYALGIA. I just know that all of this is connected somehow. If only I could find theanswer! Deborah
CommentLaurel, I am very interested in your results for my aunt who suffers with fibromyalgia.Thank you for sharing your doctors name, your symptoms, theories, etc.
CommentJennifer: I called Toth's office just to get all of the facts for future referrals.After the receptionist SIGHED upon hearing the word "vulvodynia" she proceededin a very monotone voice to give me the info: "WE DON'T ACCEPT INSURANCE, YOU PAY ASYOU GO. $200 FOR THE FIRST VISIT, BUT EXPECT TO ACTUALLY SPEND ABOUT $500-$700 BEFORE YOULEAVE THE FIRST TIME. WE ASK THAT YOU NOT TAKE ANTIBIOTICS FOR 2 WEEKS BEFORE YOU COME,BLAH, BLAH, BLAH." I wanted to shoot her. Of course I will still give his name tothose who are not helped by other nmethods and believe in the bacteria theory (that rulesthat he cured you!) but I wanted to shoot her. I didn't know Toth is affiliated with myhospital. The doc who treated me is the head of the entire OB GYN dept.there. I'll ask himabout Toth's work at some point. They have some ground-breaking doctors at that hospital.I'm glad you made your way there. One thing about my doctor that I loved is that he is themost down-to-earth, caring man. I never had to worry about money, and this is a guy whohas been voted best OB-GYN doc in NY for years. He's a real class act. All I paid out ofpocket was about $100 over the past 2 years, and that includes the $500 interferonmedication. He is just an amazing person.
CommentI need help from any of you who have knowledge of "atypical" yeasts. Mydoctor is perfectly willing to get me tested for an "atypical" and she alsoagrees that this might be the answer to some or all of my symptoms, but her knowledge ofyeast infections is limited to candida. Please tell me: how is an "atypical"diagnosed...vaginal swab, stool culture, what ? What sort of lab will take the trouble towatch that culture for a week or two ? Then what's the treatment. Any info on theseprocedures..even just to get me and my dr. stared on this...would be so much appreciated.Please e-mail me your information. Thanks.
CommentTo Susan...I just wanted to say that I did not have that experience when I went to Dr.Toth. Maybe the receptionist was having a bad day. I also felt he was one of the morepersonable doctors I've seen, and took his time with us (my husband and I) askingquestions and going over things. As far as the insurance deal, I have not found a singledoctor who specializes in vulvodynia who does take insurance. At least not my insurance,and I have Oxford. They are all expensive, because the insurance companies refuse to payfor this. They will only reimburse what they deem is necessary treatment. I have alwayshad to pay my deductible for out of network docs, and then my insurance covers themajority of the balance. But it angers me that we have to pay anything!! I'm sorry you hada bad experience.
CommentTo Susan...I just wanted to say that I did not have that experience when I went to Dr.Toth. Maybe the receptionist was having a bad day. I also felt he was one of the morepersonable doctors I've seen, and took his time with us (my husband and I) askingquestions and going over things. As far as the insurance deal, I have not found a singledoctor who specializes in vulvodynia who does take insurance. At least not my insurance,and I have Oxford. They are all expensive, because the insurance companies refuse to payfor this. They will only reimburse what they deem is necessary treatment. I have alwayshad to pay my deductible for out of network docs, and then my insurance covers themajority of the balance. But it angers me that we have to pay anything!! I'm sorry you hada bad experience.
CommentI am on Levothyroxine 75 mg, I was allergic to Synthroid. I have been following thediet since I first heard about it in Feburary from the physical therapist. The only otherthing that I am taking is a One-a-day vitamin. I am rather irritated that the doctors thatI have seen never mentioned a thyroid/vulvar pain connection even though I told them thatI was on medication. Augh!!! I really hope that this works for you. I am seeing a new dr.in May and I am going to ask him about the connection. Please let me know if thingsimprove for you.
CommentToday's Oprah show was about alcoholism, not sexual problems.
CommentI just sent an email to the Doctors Berman who appeared on Oprah twice talking aboutlack of sexual desire due to hormonal problems, pain, psychological issues. I asked themto PLEASE do a show on Vulvodynia b/c of the thousands of women who are suffering and thefact that we need more research, etc. If anyone else is interested in emailing them, theaddress is www.newshe.com/email_us.shtml
CommentBeen reading the comments over the past weeks and I have some questions/comments: Does anyone else feel overwhelmed by the variety of things women have tried? I'm alsotorn between the "infection theory" vs "yeast theory" vs "highlyrevved up immune system theory". They ALL seem true! Geesh! Could someone tell me more about the Cornell study? I feel like I missed somethingalong the way. Is there a website or something we can read about this study? Also, someone posted something about floride in water being bad (maybe it was Laurel).From about age 8 on up, I was given oral Floride pills every day. We were told it wouldprevent cavities. I hope I wasn't being poisoned! I'm reading a wonderful book right now called, "Spontaneious Healing" by Dr.Andrew Weil, MD that I highly recommend. I've had VV since 1986 with a few periods ofremission and have been suffering through my most recent bout for a year and a half.Obviously very discouraging. The theory of this book is that the body has a built innatural healing system and that there are things we can do to make this system work forus. I recently read that "fighting this thing" may not be the most effectivephilosophy to healing. The author indicates that a consistent theme in interviews of thosewho've experienced healing is an acceptance of illness rather than a struggle. I don't seethis to mean a "giving up" or "giving in" to the disease. I've hadthis thing for almost 15 years (and I'm 34 years old). Moving forward with treatment withthe mental attitude of acceptance of condition really appealed to me and I've had a senseof relief since doing so. Now, I must admit, I JUST read this last night and have had onlyone day of "acceptance" so this could all change!! I'm also working on taking a new attitude about the stress in my life. One more comment.....I feel bad to hear from any of you who are suffering from thisbecause I've been there. I can feel for those who have just realized they have this andfor those who've had it a long time. I don't know which is worse. Take care everyone, and try to enjoy your weekend!
CommentCheryl: That is an excellent book you are reading. I recommend it to everyone. To all of the others who I have spoken to about interferon and the gene that causesvulvodynia, read on. What we are missing is a natural "cox 2 inhibitor" which isour bodies way of turning off pain in a specific area: The key to fighting inflammation.(by using COX-2 inhibitors) Author/s: Thomas M.Newmark Issue: May, 2000 Herbal COX-2 inhibition Both the Wall Street Journal and the New York Times have recently proclaimed therevolutionary promise of COX-2 enzymatic inhibition. The Wall Street Journal described theinhibition of this enzyme as a future milestone in preventative medicine. The Timesreported that COX-2 inhibition reduced arthritic inflammation and menstrual pain, andappears to "prevent" cancers of the colon, esophagus, skin and bladder. What is this important COX-2 enzyme, and how can it be safely inhibited or kept incheck? The COX-2 enzyme is naturally created in every one of us. It controls the creation of ahormone-like substance that causes "inflammation." And not just the commoninflammation many experience in a knee or shoulder, but also inflammation throughout thebody, even in the brain of an Alzheimer's sufferer. Scientists now have convincingevidence that the unchecked activity of this enzyme is responsible for many forms ofcancer, arthritis and Alzheimer's disease. Amazingly, this fundamental cause of many of our most threatening diseases was onlyrecently discovered, and drug companies immediately began the race to come up withpharmaceutical substances to inhibit the enzyme's devastating effects. Research scientistsaround the world supported this effort to create synthetic COX-2 inhibitors, and there wasa wonderful, and surely unexpected, side benefit of that research. The scientists tried tofind plant compounds and herbs to synthetically copy or mimic, and they identified manytraditional herbs that contain natural and safe COX-2 inhibits. The very process to createsynthetic COX-2 prescription drugs has also led to the discovery of herbal alternativesthat are naturally available, without prescription. How does this enzyme cause harm? It is important to understand how the enzyme works to create threatening diseaseconditions. The full name of the COX-2 enzyme is "cyclooxygenase-2," and itsname contains the first clue as to how the enzyme works. Cyclooxygenase has the job of"oxidizing," or burning, a fat in the body called "arachidonic acid."This fat is an omega-6 fatty acid, one which occurs naturally in all of our cell membranesor walls. Picture the COX-2 enzyme as a "spark plug" that ignites this fat andcooks up inflammatory substances. Simply put, the enzyme is the spark, the fat is thefuel, and the flame of inflammation is the end result. While we need that fire to help our bodies defeat enemies like bad bacteria and respondto trauma and injury, sometimes the fire burns too hot or gets out of control. When thathappens we can be casualties of "friendly fire." We can develop some forms ofcancer and arthritis, and our very brain neurons can get overheated and die. This, fortunately, is not a hopeless situation, and one of the most popular drugs inthe world helps to inhibit the fires of COX-2 inflammation. That drug is none other thanaspirin, which not only inhibits the COX-2 enzyme, but also reduces the stickiness of ourblood platelets, thus helping to prevent strokes and heart attacks. Unfortunately, aspirinand related "non-steroidal anti-inflammatories" can have very serious sideeffects, and last year alone more people died from such side effects than from AIDS. While "safer aspirins," have been introduced in recent years, they lacktraditional aspirin's protective effect against platelet stickiness. As we explained above, and in much more detail in our book Beyond Aspirin, scientistsdiscovered many traditional herbs that can safely inhibit the COX-2 enzyme. Those herbsinclude green tea, ginger, turmeric, holy basil, chamomile, Chinese goldthread, barberry,Baikal skullcap, hu zhang (Japanese knotweed), rosemary, hops, feverfew and oregano. Ablend of the appropriate extracts of these herbs, if sufficiently concentrated, may offersubstantial relief from the "fires" of COX-2 inflammation and the relateddiseases, without the side effects of synthetic drug inhibition. And the even better newsis that when these botanicals inhibit the COX-2 enzyme, many of them also powerfullybalance platelet aggregation (thus helping to prevent strokes and heart attacks) and healulcers. This is the genius of nature, and why cultures for thousands of years haveobtained healing benefits from extracts of these botanicals. Note: I have not tried natural Cox 2 inhibitors, because I got what I needed fromInterferon Injections. Please ask you doctors to read the Weill/Cornell study done bydoctors at New York Hospital.
CommentBecky: My doctor not only took my insurance for my condition, but fought HARD (and won) to getmy insurance company to fully cover my Interferon Injections. As far as I am concerned,this is just as important as giving proper treatment to a patient. I consider it highlyunfair to expect someone (especially a Vulvodynia patient who has been to a million otherdoctors beforehand) to pay out-of-pocket when most of us do have insurance. I work for avery large well-known corporation, and even my HR department failed to achieve thecoverage of my medicine. It was only my doctor who convinced them that this was IT -- myonly chance to live a normal life. He was 100% correct and in the end, I finally hadrelief from the constant burning and pain. God bless him. He is hyper smart and a verygood person at heart. He is a D-O-C-T-O-R. You must understand that even though thenumbers may seem high at first glance, we are of a small minority. It takes a specialperson to truly wants to help a patient such as us. At my last appointment, he almostCRIED knowing that I am now OK and that I met a wonderful person to whom I am now engaged.He gave me a huge hug and congratulated me on being a good patient who did not give up andwho has done her homework. To everyone out there I say that THERE ARE DIFFERENT CAUSES TOTHIS ILLNESS, but you must continue the struggle.
CommentI have just been to the Oprah site (www.oprah.com) and sent emails urging them to covervulvodynia on thir show. This show, although I realise not always scientifically sound,reaches a large number of people. If enough of us email them they may do a show andincrease awareness about this condition. I urge everyone to do this because hardly anyone(drs included) know this even exists and the more awareness the more likely furtherresearch will be done!!
CommentI have an apointment schedualed for surgery (a vulvular vestibulectomy) in mid may.They will be removing my major and minor vestibulary glands entirely and doing a skin tuckanteriorly to keep me from tearing with intercourse. I am verry nervous about thissurgery, even though I know I am in good hands with the specialist I am seeing inWisconsin. I would really like to hear from some of you who have already had this surgery.I would like to know what the outcome was, If it made your symptoms better or worse. Iwould find it very reasuring to hear from someone who has been through this. Feel free toemail me directly at christina_bunny@hotmail.com
CommentSusan: I am glad that you have a doctor like that. You are very lucky, as they are hardto come by. My primary care doc is like that...and I wouldn't go to anyone else. He hasspent an hour with me in an exam. That is practically unheard of. It is a shame that moredoctors aren't like that.
CommentHere's the thing...Dr. Toth is not a vulvodynia doctor. He is Infectious Disease andOBGYN, specializing in fertility. The small group of doc's who specialize around thecountry, are a unique few, that are more empathetic, and understand more clearly what thevulvodynia patient goes through. Everyone that has gone to Toth after speaking with me,that is three people so far, and someone else will be going end of April, have been veryhappy with Toth, he is very thorough and interested. The thing is he probably (this isjust my guess) doesn't really care that you tried the oxalate diet (he probably does notknow what it is) or that they gave you estrace, and steroids, and tricyclics. He knowsnothing about these therapies. Doctors only know the part of medicine they deal with. Someof it sometimes crosses over into other areas by coincidence. This is why I haveemphasized that I am trying to share the infectious information I have to the women whofervently believe thiers started with a new sex partner, and have infectious symptoms.Toth will speak your language. The "vulvodynia" doctors whether they aredermatologists or GYN's, will be willing to see all of you. I want to serve the purpose ofbeing the person to say, "I know every vulvodynia doctor said that it is notinfectious, but I believed mine was,and if you do too, I know who you should see." Having said all of that Susan, I am sorry Maria was short/rude with you. There aretimes when I call her that she seems like she is doing a million things, and seems kind ofannoyed that I called at that moment, so I 100% believe that you might have had a negativeexperience with her, BUT for the most part she has been wonderful for me. She just spentten minutes with me on the phone, because I was sooo upset with my doctor's office hear,when I was having an allergic reaction to my IVF meds. She went above and beyond, tellingme what to expect further into the process, and was very comforting. I guess it dependswhen you hit her. Celebrex is the new COX-2 inhibitor that does not have the stomach irritants (does notaffect COX-1 like aspirin). Here is an old press release for the Cornell workwww.nycornell.org/news/press/vulvar.html And here is part of what one of the doc's had written me, I had asked about theresearch, and whether they could measure the response of the immune reaction while puttingsome of these patients on antibiotics, and his basic thoughts on my infectious idea...."Our thinking is that there can be many triggers (infectious and non-infectious) forinflammatory reactions. The difference in some women with vulvar vestibulitis is arelative inability to terminate this reaction after it is initiated. We are currentlytesing for interleukin production in whole blood cultures of patients and controls inresponse to various stimuli. It is possible to measure interleukin levels, or changes ininterleukin production, of patients on antibiotics but we have not done this. It ispossible that "normal flora" is not normal for some women due to their geneticsand triggers inflammation. It is also possible that we have just not yet identified thecausative microorganism present in the vulva of women with vulvar vestibulitis." Hope that was helpful, have a great weekend.
CommentI was "cured" of vulvodynia for 3 years. It is starting again after pregnancyand depo shot. What worked for me before was Neurontin 1200 mg daily, allergy shots andmost importantly using Zostrix topically daily. I think the Zostrix helped more than theNeurontin. Those got rid of the pain but I still had vaginal itching and irritationdespite negative cultures. 2 weeks after starting the allergy shots, that was gone and Iwas symptom free for 3 years. If you use Zostrix, start using away from the vulva, nearthe pubic hair, and you can apply it closer as you get used to it. It will burn when youfirst start using it but stops after about 8 applications. I used it 4 times a day formonths. This was suggested by my pain management Dr. It really worked. I really do thinkthis is yeast related, but Diflucan and other antifungals don't help much. If it is anallergy to yeast, it makes sense to take the allergy shots. And they worked for me like amiracle for the vaginal itching and irritation part. So now I'm back to the allergist.Everyone they have treated for Vulvodynia has been improved with the candida antigen. Theytold me I was allergic to even normal amounts of yeast, thats why cultures don't showanything.
CommentOkay, I found my (unopened) bottle of N-Acetyl Glucosamine. Too bad I seem to beallergic to it. Makes me shaky, b/c I am hypoglycemic? Anyway, the bottle that I have isdistributed by Scientific Connections (Dr Solomons). The label says Optimal Nutrients onit. There are 120 capsules at 500 mg each. The only excipient that it contains is ricepowder. It is free of coloring, flavors, salt, soy, sugar, starch, wheat, or yeast. I amsure that is why he has his patients order from him. The HTO (Hexadecyl tetradecenoyloctadecanoate) comes in a bottle of 60 capsules at 375 mg. Each of those capsules containsHTO (375 mg), magnesium aminomin (220 mg), silicone dioxide (175 mg), and a rice proteinfiller (probably the capsule itself). It, too, is free of the above irritants. TheOx-Absorb comes in a bottle of 270 scored caplets. it is a specially processed OrganicMarine Hydrocolloids (OMH) charged with calcium and zinc. OMH are polymers of highmolecular weight that are extracted from sea vegetation. Nine caplets provideapproximately 6.75 gm of inert/insoluble polymers which act as a natural bulk formingfiber. Those have to be ordered through the former L&H Vitamins (New York), now calledVitamins.com Hope this helps. I am still working on finding the low acid coffee that somewomen are able to tolerate. I have so many back issues of the Vulvar Pain Newsletter, Ithink it will take me some time to find. Talk soon-laurel
CommentThe girl who used Zostrix, I find that drug interesting. It works on substance P, whichI believe is what they believe contributes to RSD (I have written befor that I believethat the many vulvodynia sufferers, also suffer from RSD). I don't know much about thedrug, except what I wrote here, and my PDR is too old to look it up, but if I were you, Iwould get the manufacturers insert from the pharmacy (they'll give it to you withouthesitation, make sure it is the INSERT and not what the pharmacy prints up) and make surethat it is o.k. to use on mucous membranes. MY guess, just a guess, is that it has onlybeen tested on regular skin, because it is used for joints. I mentioned this, because youtalked about burning, and my guess is you are a guinea pig. Does not mean it is not o.k.,but you should probably be aware. About Insurance. If you have vulvodynia (even if you don't) I recommend you getinsurance that gives you the option of going out of network, and getting at least partialcoverage. During the first few years of my vulvodynia I had an HMO and I swear I almostwound up in a rubber room trying to fight with the insurance companies. I won't go intothe whole story, but I had their own doctors write letters that I need to see thevulvodynia specialist in my area, and they still didn't pay, and it is hard to have thestregnth to keep fighting with everybody when your crotch hurts every day! I also want to point out that in The United States of America, we are not set up tofeel entitled to medical care, we have to pay for it. This is not a socialized country. Iwon't talk about which kind of set up is better or not, it is just a plain fact about theU.S. I know that if you pay for your insurance, you want them to cover at least what theysaid they would, I feel that way too, but we also need to face the fact that it is betterto spend a little more up front, and have better coverage. (I know some people do not havevery good insurance options at their companies.) I know women that will pay $50 for a hair cut, and go out for a $40 dinner twice a weekwith their husband,and spend $20 on wine for a week, and don't want to pay $100 to see adoctor. I am not directing this at anyone specific, but I don't think we should be soupset about paying a profession, who went through years of schooling, money for hisservices. At Toth's office, Maria did write up my paperwork, to help me get the best coverage Icould with my insurance. She seemed to take special care with this. I think my appointmentwith Toth with cultures came to $400. Maybe Becky can tell us what hers was? Then, my IVwas $3000, a very reasonable price for a 10 day IV. My insurance covered pretty well...Ithink after deductables, and I have to pay 20% I wound up spending $800 or so. Susan, you are obviously very intelligent, and very well read. Can you tell me a littlemore about your pain and when it started? I think I missed that. And to the person that said there are too many theories, and all of the info isdizzying. I agree. This is the only reason I have a little empathy for the doctors. No oneknows the perfect answer, and the doctors are left with the burden of our expectations toheal us. And the more educated you are on the subject, the more your mind starts to whirl.The more you understand about nature and science the more you see that there are manypossibilities, an dthat the human body is so intricate, it is hard to know hwere to start.For instance, do you feel comfortable using immuno-suppressors if they make you feelbetter? Or, would you rather try to identify what the antagonist is, and rid yourself ofit? Who knows what the correct answer is?
CommentJennifer, I am very interested in your theory and i want to thank you for giving us thesite of the cornell doctors. i was wondering whether you had pain only around thevestibule? If it were a bacterial infection, why would i experience burning only in asmall specific area and not anywhere internal? I came down with VVS after i tookantibiotics for two weeks and got a terrible yeast infection. why would i get a bacterialinfection from taking antibiotics? I would appreciate any advice you could give on thistopic. also, i want to have my gyn do some cultures for the strains of bacteria that werefound by your doctor. could you please give me their names? Thanks so much! Also, to the person who wrote about allergy shots: could you tell me where your doctorworks? Maybe i could contact him and get some info which i could then relay to myallergist. i believe that i am very allergic to yeast, and that that was what started thisinflammation. do you also take an allergy medication, and if so, which one? Laurel, thanks for the info on NAG. I just wrote Solomons and asked if I could buy somefrom him. I am not in his pain project because i am simulataneously following the therapyof Dr. Stewart, who is giving me anti-depressants. he has, however, tested my urine, and iam following the diet, taking the citrate, and the OX-absorb.
CommentFirst, I want to say that the Cornell Study, does not support my theory. It does notdiscount my theory either, but I was afraid that I was not clear about how I feel aboutthe study, and my communication about my theories with the doctor there. After reading thelast entry which asked me some questions, I think I should elaborate. The reason I asked if they had studied the immune response they had identified relatingto vestibulitis and antibiotics, is because I believe that the antagonist is still there.The study is saying it is not longer there, but the body continues to fight as though itis. The doctor was kind enough to admit that my theory was possible, but it does notrelate to the research they are presently doing. This is one of my frustrations withfuture research, I fear that the research is not going to be done on bacterial infection.I mostly provided the cornell press release website, because someone was asking about thatresearch, and I had it handy. Like I have said, better to know as much as possible. The bacterias found in me were Group B streptococcus, which is aerobic, moderate growthof lactobaciius casei, Streptococcus constellatus, Streptoccucos intermedius, Gemellsmorbilloram, and Peptostreptococcus tredias, plus a heavy growth of Torulopsis glabrata(yeast-like organism). At least that was before the final IV I had, the first time I wentto Toth there was other stuff. I wrote these out, because you asked, but I don't think itwill do you any good. I had just been to my doctor two weeks before Toth, and he came backwith no yeast, and all normal Flora, AND we had asked SmithKline to report all growth,even normal flora, and they didn't! There is also the possibilty that we are reacting todifferent bacterias depending on our own immune system. I cannot explain why the pain is on the vulva, and not the vagina. For some reason thatis the area with the inflammation. Why did I have pelvic pain and mal discharge when I hadChlamydia, and my girlfriend did not even know she had it? WHy with my vulvodynia did Inot have pelvic pain, until 7 years into it, when they discovered through surgery that Ihad adhesions everywhere from a "long standing infection" that finally hadadhered my colon to my ovary and started to give me digestive problems and pain on myside? Chlamydia patients consistantly have no pain, but meanwhile are having therefallopian tubes destroyes, and men almost never suffer (although I believe prostatis is afunction of the same thing). Very complex. There is the belief that we have a mix of flora in the reproductive tract, thatincludes bad bacterias along with good, but that since the bad ones are in low numbers(not an infection, numbers are not high enough) it is no big deal. Some say that anantibiotic could tip the balance killing good stuff, and create a bacterial infection, thesame way it can let yeast overgrow. It is logical, but I tend to think there is somethingnew being introduced. As much as I think there is something new introduced I am freakedout that taking the antibiotics and going through the egg retrieval for my IVF, could spuron my vulvodynia again. How do you know you had a yeast infection? Was it cultured? Why had you takenantibiotics in the first place, was it completely unrelated to your reproductive health?
CommentJennifer- thanks for getting back to me. the reason i took antibiotics was because ihad had a very stubborn sinus infection. whenever i became stressed, the weak point on mybody were my sinuses, and i would get an infection every few months. i wonder if the twoareas were somehow connected? I took CIPRO, unfortunately, which is quite strong and killsa whole range of bacteria. i then got a yeast infection, which my doctor confirmed bylooking under a microscope. in the beg. the meds helped the yeast infection beautifully,but after a couple of weeks it tirned into constant burning..... i really do think that i had an allergic reaction to the yeast. sorry if this is vague,but it has been a while since i looked over the literature: i'm sure you read in the NVAhow certain strains of yeast have an antigen that mirrors the bodies own antigen, anantigen released when the body begins fighting an invader. then the body turns on theyeast, but also on itself, thereby creating an imflammatory condition. when i read the comment written yesterday about the woman who improved by takingallergy shots, i became very excited. i really want to try that out. i am still veryinterested in your bacteria theory, and i will bring it up with my doctor. if your testscame back normal, how did Toth know which strains were the culprits? Sorry, you might havesaid that but i forgot. thanks for getting back to me so quickly.
CommentJennifer: I wrote once before that my pain started when I was stupid enough to insert atampon when I wasn't bleeding too much (very end of period). I didn't have any pantylinersand I was in a rush. When I went to take it out I found that it was dry and stuck. Like anidiot, I closed my eyes, counted to 3 and pulled it out. Big mistake! From that moment onI spent months upon months complaining of a 24 hour a day burning, pulling and congestedfeeling down there. I could barely sit down, barely walk, couldn't think about sex foreven a second,,. It was unbearable. After so many doctors tested me for the same old stuffover and over again and found nothing my normally positive self began to slip intothoughts of suicide. It was that bad. In all, despite the fact that nothing seemed wrong,I was given about a half dozen various creams. Some contained estrogen, some antibiotics,some were pain relievers, others were to fight yeast... Then it was on to oralantibiotics, then ambitryptaline (pardon my spelling -- too lazy to look it up). Nothinghelped, and still no sign of anything wrong besides the pain. Somewhere along the line oneof the doctors I met with said "I've heard of this..." He then referred me tothe doc who, as far as I am concerned, saved my life. I called him yesterday to discuss ivantibiotics and some of the other things I've read here, and he said once again thatperhaps it would be beneficial for some to go that route. For me though, since I have thegene from hell, it's different. With one swift pull of a tampon I turned on the pain whichcould not be turned off without assistance. We then talked about childbearing, because asI mentioned I am getting married soon. He explained that most of the women who have thisgene actually do even better after having kids. I hope so, because I was imagining that avaginal delivery would send me screaming back into hell. I guess the body (while pregnant)naturally produces something to keep the gene from doing its nasty work. It was a quickconversation so we didn't get into full-on medical jargon. I understand that you may needextra help having a child, but I have to tell you, so many of my friends needed help forvarious reasons and ultimately they have all succeeded in having children using oneprocedure or another. Don't worry. In all, 9 friends were declared "infertile"and 9 friends are now changing diapers and going to kindergarten classes, including mybest college buddy who endured 8 years of treatment and encountered a battery ofnegativity. Keep your head up, girlfriend. My last friend to succeed got pregnant on herFIRST invitro down in Atlanta. Just remember if you go that route that it is just asimportant to have a good embryologist. I'm not worried about you because you are a fighterand you have a keen mind. Regarding the state of medical care in the U.S., I think Toth'soffice just gave me a bad flashback. I should probably apologize here for such an adversereaction. They are probably godsends and I just freaked. I am now spoiled by a doctor whoaccepts my coverage and eats the cost if it's anything over the coverage amount. He knowsall of my stories about the thousands spent getting nowhere & wants more than anythingto never have to see me again in his office crying my eyes out. It's a welcome relief fromthe buttheads before who nearly drove me into the poor house without giving me 10 minutesof pain free living in return. If Toth made you well then he's worth a billion in return.
CommentTo Christina: My wife had surgery to form a new scar where she was tearing the sixo'clock position. The vulvodynia Dr. said it would not work but her Gyn was willing togive it a try. He corrected a rectocel, reattached some muscle and made a new scar. Weabstained for more than six weeks and she used Estrace cream to aid in healing. When wetried to have sex she immediately tore in the same spot, whatever caused the skin toweaken and tear was not corrected by surgery. I wish you the best with your procedure, Ihave read that many ladies get pain relief with the surgery you mentioned. Take care.
CommentTo Lisa M. who posted on 4/18; You said just the exact words of how I feel. I totallyrelate to your feelings. I wish you were out here in Arizona so we could talk about thiscrap together. I wish I had a friend out here who had the V-con conditions like I dobecause at lease they'll understand me when I hurt. The people at work and even my familymembers don't understand why I get upset and feel sad when I'm in pain. They don't like tobe around me. It's just very hard you know? My husband and my freind(which is a guy) arethe only 2 people that understand me when I hurt. But being around another female isimpossible. Susan, are you an african american female? I just want to know because I'mjust needing a little advice from any sisters on here that I can relate to. Let me know ifany of you are african americans.
CommentA streptococci or staphylococci infection can be a sign of hypothyroidism as well. Anexcerpt from Solved: The Riddle of Illness-"Treatment with antiobiotics bringstemporary relief and skin improvement, but soon the negative condition returns, becausethe cause-low thyroid condition-has not been corrected. Many such cases I have treatedrespond to natural thyroid, a B-complex supplement, and a reduction or elimination of junkfoods." Just an idea! This book is fab and vulvar pain is mentioned in it. laurel
CommentTo Susan, and the other person, that has been writing me. My gut feeling is that yoursis not infectious. I agree with you Susan, that having the gene, andthe way yours startedseems like it is from the trauma, and I would have a c-section. My vulvodynia doc inMIami, once asked at a vulvodynia convention what happens to women after delivery. Of thedocs she asked it was about even...1/3 said the patient got better, 1/3 worse, 1/3 thesame. Do you really want to risk it? For the person who thinks it is an allergic response...I am not sure what to tell you.I think my body was having an immune response to the bacteria I harbored. Immune responseand allergic response are the same thing. Reasonably I could have tried to squash myimmune response, but I still would have had that infection. You say it stareted with theCipro, as I had said before there is theory on an antibiotic triggering bacterialinfection, but I also had said I don't think I buy into that scenerio. Definetly peoplebelieve that a yeast infection can trigger the immune response. It seems if your yeastinfection is gone you would fet into Susan's category of continued immune response, afterthe injury. I have to think about it more. How long have you been having sinus infections? Do you know what ttriggered those? Jennifer
CommentHi everyone, I've been reading entries of the past few days and I thought I'd share my recent trial!I've had vulvodynia for 10 years. Mine is a special type and gives me clitoral pain onlybut it behaves exactly like vulvodynia. Over the past 10 years, I've tried various meds,creams, approaches and got tired of trying things that sometimes made me worse for awhile. I recently found a doctor who referred me to physiotherapy with biofeedback and ithelps. I believe my pain is related to yeast but that once the yeast infection is treatedthe pain persists because of tension in the pelvic floor. I'm getting good results from itnow and the yeast is under control at the moment so I'm actually happier than I have beensince the onset of this flare up in november (after a miscarriage). So for any who areinterested, my doctor in Canada is Dr Marc Steben, in Montreal. He is a great, caringdoctor who is knowledgeable and interested in vulvodynia. He actually told me about thissite! He is at Notre-Dame Hospital at the vulva clinic. There is another doctor in Torontowho is specifically working on clitoral pain and doing research on it. His name is DrAllan Gordon and he works in the Pain management center of Mount Sinai Hospital. I haven'tactually met him (Toronto is about 5 hours from Montreal) but we've been communicating bye-mail and he seems great. I will probably go see him soon but wanted to try physio first.So I hope this may help my canadian friends and obviously anyone else who may benefit fromthis info! I can give you exact phone numbers if your interested. Things are lookingbrighter, spring is finally here! Dominique
CommentIf anyone knows of a doctor in the St. Louis, Missouri area who specializes in problemsre the vulva, please reply. I've been having some unusual discomfort, mainly burning and afeeling of malaise, on the outside area. My doctor gave me 2 samples of steroid creams totry. However, he warns me that over time these creams will cause my skin to thin, shrinkand/or tear. How can this be helpful?! I'm supposed to go back to see him in 3 weeks, butif this doesn't help, I don't know what he'll want to do. He did a Q-tip test on me andtold me I don't have vestubilitis. If I have vulvadynia, it sounds as if I'm scarred forlife. (Chronic). So, if anyone here lives in the St. Louis area, city or county, and/orSt. Charles area, please let me know of someone who specializes in this area. Thank you!
CommentLaurel, I am wondering why the author of the boof you refer to, or you for that matterdon't think that the thyroid condition is a result of the infection? I do not mean to saythat his theory is wrong, but that certainly it can be looked at from two sides. Lets saythe infection is the underlying problem, andteh result is a thyroid problem. When you takeantibiotics you feel better, but possibly so not eliminate the bacteria, so when you stopback comes the infection, and other related problems. I think it is more likely that teinfection is the underlting cause, because the antbiotics work, unless there is someproperty in the antibiotics we don't know about. When you treat your thyroid, you treat itforever. Hypothyroidism is maintained usually with a daily pill...well you could probablymaintain your symprtom with a daily pill of antibiotics. What I have seen is that hormones to react to things we don't expect. For instance myexample of the people who do not ovulvate (PCOS) patients. They begin to ovulate withdiabetic drugs, OR if you give them hormones. I tend to think the sugar problem is theunderlying cause. I am not trying to argue, I certainly don't think I am definetly right, and I have notread the book you mention, so it would be unfair for me to critisize, but I do think it isimportant for us to look at things from all angles.
CommentI submitted that last one without going back to edit. Let me know if the jibberish istoo hard to follow.
CommentHi! I learn so much by reading the entries. Have faith. After 6 years I can see thelight at the end of the tunnel. Almost pain free. The purpose for this memo is to letthose of you in the Los Angeles area know that we have a Vulvar Pain Support Group onbehalf of the VPFoundation. We will be having another meeting soon. Even if you are not apart of the foundation you would be welcome to attend. E-mail me if you would like moreinfo. Maryann
CommentHi all. I have some great news for us all. I have logged on to the www.lifetimetv.comand clicked on the sexual relations topic and they give you the opportinity to tell yourstory. I always watch the show called "Strong Medicine" and since they alwayshave shows that are about uncommon illnesses, I thought that Vulvodynia would be a greattopic for an episode. So I email them and told them all about Vulvodynia. maybe you allcan send them an email as well. Afterall, Lifetime is the channel for woman. They shoulddo this for us. I hope they do. So please all of you, send them an email today and as Iwatch the show every week(sunday evenings) I hope to see that as the topic.
CommentHello All, I have visited the guestbook several times, but this is my first entry. I ama 30 year old woman who has had pain with intercourse for almost 10 years, ever since thefirst time with my now-husband (though I had 3 years of non-painful sex before that). Iwas diagnosed with vulvar vestibulitis 4 years ago after 6 years of various doctorstelling me they could see nothing wrong, and that it must be psychological. I have triedvarious creams, etc., and the low-oxolate diet and calcium citrate. Many of the othersymptoms have improved- the pain with intercourse and intermittent discomfort, burning,itching remain- all are liveable but the pain with intercourse. Have not triedanti-depressants, and would be interested in feedback. Am next trying a physical therapistand possibly acupuncture/hypnosis. Next step is surgery. I would really appreciate anyinput or shared experiences. Also any recommendations for an MD that specializes in thesedisorders anywhere on the west coast, especially Oregon or Northern California. Thisproblem has become huge in my life, contributing to fairly severe depression at times, andmy marriage is really struggling. I shy away from any intimacy- I have no sex drive, anddon't even want to cuddle or be held. To say the least, it has been very hard on myhusband. I don't want to be this way, but don't know how to change. I'm not sure if I can.I'm not sure if I can save my marriage, but I'd still like to try and improve thesituation- the depression and guilt are a bit overwhelming. I never would have married myhusband had I known how things were going to be. If anyone has been through similarfeelings and problems with intimacy, please help. I will check on the site, or e-mail medirectly. Thanks all for listening and good luck.
CommentGrantedI am not a doctor, so I don't have a lot of the answers either. That is why itis nice to see that we all have these different theories. That is why I am trying to getthe word out there, especially those with fibromyalgia, that perhaps their condition istreatable and preventable if indeed they do have a thyroid condition. I mean some peoplego through their entire lives and just think that their metabolism is sluggish or thatthey have resigned themselves to the fact that they are just low on energy, or it can be anumber of things that they have gotten so used to that they do not make the connection. Iknew I had this because I was unusually cold all of the time and my periods were sparseand I knew my hair and nails just didn't grow like they used to. And I had fatigue fromclimbing a flight of stairs. The more I read on the fibromyalgia aspect I knew I had atleast that. But then I just always felt that fibromyalgia can't be detected through bloodtests. It is a feeling of general malaise that never goes away, although some days I wouldfeel fine, only to relapse a few days later. So, knowing the thyroid ran in the family, Iarmed myself with 5 books and started reading. Most mentioned fibromyalgia. But then Icame across all kinds of gynecological and genitourinary problems and the in two books itmentioned that vulvar pain was a symptom. Just too coincidental to me, and the Vulvar PainFoundation's seminars have Dr Paul St Amand speaking on the illness b/c so many women inthe group have both vulvodynia/vulvar vestibulitis and fibro. I think that there has to bea link. In my opinion (just a hunch), when the thyroid does not work to it's fullpotential, then our immune system will not either, thus opening the doors for all kinds ofillnesses including but not limited to bacterial, yeast, and other vaginal disturbances.Someone with an underactive thyroid does not have the ability to fight off theseinfections as someone who does not. I know that many get all kinds of colds and otherupper respiratory conditions constanly. Myself, I had strep for 2 years and they could notget rid of it! And I became immune to the antibiotics as if it wasn't bad enough. Thatprobably didn't help the vulva. Also, I had my share of bacterial and UTI's , amiscarriage, missed periods, like this was not the norm. So, I have it in my head (and Iam stubborn when it comes to the vulvodynia) that mine at least was a result of my immunesystem not being able to fight off infection and over time all it took was a catalyst(like an antibiotic or mere penetration in the area) to bring the whole condition on. Ifthat makes any kind of sense. I think that thyroid should at least be looked into. Thespecialist that I am seeing stakes his life on the fact that fibromyalgia is non-existent.he believes that people are just not being diagnosed properly.Ido not know if my conditionwill ever go away. Right now, I would have to say that I consider myself 70% cured, somedays I even feel great. I am hoping that this treatment will bring my vigor back, but alsolet my immune system build up to what it used to be. Perhaps that will allow the thetissues in the vulvar area to regenerate and heal. I think that personally the area in thevulva for me has sustained some kind of injury or infection that my body could not fightoff even with the antibiotics. Something in those triggered the whole pain process I amconvinced. But I mentioned the strep because I happened to be reading about it in the bookyesterday and thought it was very interesting. I wish I had the answers to this, I am surewe all do. trying to throw a few things out there. Don't mean to sound like I knoweverything, because I sure don't! I just can't stop thinking that we all have this dreadedcondition for some reason and I can't help but think it is a true medical condition,something in our bodies that we can't fight off, but others can. Why is this? okay, beforeI go on and on, bottom line is hypothyroidism does not cause vulvar pain. A lowfunctioning thyroid will lower the bodies immune system and allow all sorts of bacteria toenter and remain there because we can't fight the infection 100%. The antibiotics willkill some of the bacteria, which is why we may feel good for a time, but a few weeks ormoinths later the strain builds up again and this time it fights off the antibiotics eveneasier. The cycle begins again. And it stinks but it could be possible. I think that oncethe vulva is injured it is extremely difficult to heal because it is such a sensitivearea, exposed to urination, sex, etc. Well, enough of the rambling. Just trying to give apossibilty. Only the future will tell for me. Sorry to go on so long. let me know what youthink-Laurel
CommentTo Lynn: For what it's worth I wrote to Lifetime and gave a brief description of thedisease and treatment. I requested they do a show on this personal and life alteringtopic. Let's hope they show some interest.
CommentI hope I don't sound too nasty and I hope I don't offend anyone but I have vulvodyniaand I started it about a year ago. I use to be a strip dancer and now that this has takenover my life, I can no longer dance. I never feel sexy so it just won't work. I've alsodone nude photos but of course that doesn't work because of the oral sex. But it was theway that I made my living and I miss it. Is there anyone out there in my shoes that canoffer some advice? Are there any exobitionist who suffers and knows how to still do whatshe does and still feel sexy without letting this condition take over her life? Pleasesomeone let me know.
CommentPerhaps some kind of bacteria entered from the oral sex. Or years of wearing tightpanties? Or both together? Did you have to take antibiotics during the time it started? Iurge you to join the Vulvar Pain Foundation and Dr Solomons regime. No one deserves thiscondition, and many are markedly improved.
CommentLynn, My name is Stephanie, and I am African American. I am 27 years old, and I havebeen suffering from vulvodynia for 7 months. I understand how you feel because it seemsthat none of my family understand the pain that I go through, only my husband because heis with me everday. This disease is so strange, and it really takes a toll on your life.We just have to keep looking for answers and hope we find some relief from this all.
CommentLaurel, it is not that I think you are wrong, or that yoiur theory does not make sense.I think it is possible. I know my aunt, who has Fibromyalgia, is convinced there issomething wrong with her thyroid too, even though every test comes back normal. And, Iagree 100% that women should have their thyroids tested, because it is something that isoverlooked a lot. But there is some stuff that seems to not line up. Like for instance...inflammation isa HYPER-immune state. You are saying that the thyroid condidtion would leave your immuneresponse LESS active. Also, the problem with my bacterial cultures was not that I had theinfection, but that the rest of the medical world either did not grow what was there, orthought what did grow was normal flora. So, it is not so much that I had those infections,but that no one on the medical establishment believed I had an infection. I had no othersigns of thyroid trouble, I cycled like clock work, etc. I did have my thyroid tested manytimes, my mother is hypothyroid, and I was seeing an RE who, of course, tested it over andover. I do think it is possible that your vulvodynia is secondary to your thyroid condition,and once the thyroid is fixed, your vulva will be fixed. But, I think that probably youare in a different category than me. To the girl who was an EXOTIC DANCER...I really feel bad for you. Vulvodynia took awaymy feeling of sexiness, and part of my identity, and I cannot imagine if it directlyrelated to my work how I would feel. Are you able to do another type of work to earn aliving?
CommentI just wrote both Lifetime and Oprah, urging them to do a show on Vulvodynia. I plan onwriting many more magazines in the near future, and when I do I will let you all know sothat you can mail them as well. To Dena- I am so sorry that you are having a hard time with intimacy. I am sure we areall grappling with this issue, and I want to offer my thoughts so that others might relaywhat works for them. My boyfriend and I try to think of strategies, in which we can bothget pleasure. I am soooo sensitive, however, in the vulva area that sometimes the lightesttouch gives terrible pain. The best move I ever did was to let my boyfriend feel that hewas helping my recovery. sometimes he massages the area that my physical therapistprescribed to me or he will come to appointments or remind me to meditate or take mymedicine. of course these are not intimate activities, but it lets him realize that he isan ally, and a big big help. Since that makes us feel closer to one another, we justnaturally want to hug or cry together. It is hardly a substitute by any means, but it doeschange the atmosphere, and it might help you. I know that we will all recover at some point. let's think positive, and work hard toget our nation's awareness!!!!!!
CommentKeep writing all of those shows and magazines. I have written everyone at least once Ithink. My girlfriend told me that strong Medicine on Lifetime already did an episode aboutvulvitis, did anyone see it? To the African American/black (which do you prefer? All of my friends prefer black)women, most of our families don't really unndestand either. They are sympathetic, butdon't really get it. I hope you don't feel separate from the rest of us (that weinadvertanlty made you feel that way), I know that it has been talked about many timesthat most sufferers are white, blue, eyed, etc., but I am sure there are more people ofcolor than we think. Some of it might be cultural. I have a friend who is Latin Americanand suffers from vulvodynia, and she would not dare tell her family, and only told me,because I told her first. I wonder if there is some of that among the African Americancommunity? And, I hate to lump the whole black community together, because I think thatsocial class tends to separate and define people more than color, religion, or ethnicbackground. The more you make it known that you have this the better, and the more likelyother Black women will come forward. In the end it doesn't really matter, we are all womensuffering.
CommentI got a reply from Lifetime TV already. Very nicely worded and positive. They thankedme for my story and said they are always looking for ideas . They said it was a possiblestory line. Who knows any exposure will shed attention to both the vulvodynia and V.V. Tothe Exotic Dancer and any other lady in a similar profession don't let any negativefeedback bother you it is there problem not yours. Try to concentrate on learning more andhelping yourself. Bye
CommentFrank, where on the website did you write into (LIfetime's website) I'll write too. Ihad written strong medicine before, but it sounds like you got to a main Lifetime channelpage? Can you forward the website to all of us?
CommentI am glad that you are giving me your point of view. I welcome all opinions. I havebeen complaining about the thyroid for 5 years. I have been tested so many times that Ishould have a blood bank by now! All tests came back negative for the disease, but I waspersistent and went over their heads when I found out about Dr Blanchard. First, each labhas a spectrum of what they think is considered a normal reading. So, one lab may say thatthe test came back negative, while the other may show something. I was surprised to findthat out. Secondly, my endocrinologist believes that it is very possible to have thecondition but test negatively over and over again like I did. it has something to do withour bodies using up either too much t3 or t4 (can't remember) and giving the TSH test(considered the most accurate) a false reading. I do not doubt that your grandmother isprobably hypothyroid. Also, there is hyperthyroidism when our bodies are constantlyburning fuel and we lose weight. I do not know if that would cause vulvodynia orfibromyalgia since I have only read about hypothyroidism. I know in the past discussions Ihave included a way to tell if the thyroid is underactive. Dr Broda Barnes came up withthis test and it is used by many doctors whose patients are testing negative. I think thatyour grandmother should try it. I probably wrote it at the end of March. Another cluewould be low blood pressure, but also have her take her pulse and see if it is under 66beats per minute. maybe her question will be solved. I hate to see someone suffer with theFibromyalgia if it can be cured with a thyroid treatment. The temp test is so easy toperform, I don't think she should have any trouble with it. Let me know if she tries. Iwould be curious to know if she has the classic symptoms. Well, that is about it. Do youstill suffer with pain or has your treatment helped you? My biggest problem I feel is withthe bartholin's glans. Once that is aggravated or if I have put pressure on it too long,then it will start to ache. But, I drink tons of water when it starts and after a fewvoids, it seems to let up a little unless I am having that occasional flareup then it canbe days. Much better than 9 years ago though, so I can live with it much better. But stillnot satisfied of course. I will keep trying until I find a way to help us all. Thanks forthe ear-laurel
CommentI went to www.lifetimetv.com, juat follow the directions from there to question orcomment. I used the space for comment to write my message. They give you a choice ofseveral topics, strong medicine was the one I chose.
CommentOK, i just sent a formal letter to Vogue, Marie Clare, Elle, Vanity Fair, Mademoiselle,Self, Glamour, Oprah, Lifetime. Tomorrow i will pick ten more magazines/organizations towrite to, including the NY times health section, and the health section in the New Yorker(a few months ago they did an appaling article on Fibromyalgia). i would love it if morepeople would write as well. if we all write someone will listen. Marie Clare did have atiny article about vulvodynia last month. I'll let you know what happens......
CommentI know that you mentioned that your wife wants to resume sex although she tears everytime. i think that is very admirable of her to think of your feelings as well. I have madean improvement with the low oxalate diet and various medications since joining the VPFoundation in 1995 and I can tell you this. I had sex more when I was in pain than I do atthe present time and even though I still have discomfort, I am sure that it has to do withthe fear of what the next few days will bring. I hate to do this to my partner, but I amfearful that I will reinjure the area after I have come so far. How does your wife copewith this? If you don't mind me asking, how often are you both able to have sex? How longdoes the tear take to heal? Any advice for me? I feel that I am being selfish, but it isso hard to think of anything else but a major setback. I want him to understand yet Idream of being able to have pleasurable intercourse. He does not talk a lot about it, so Ithought that you might be able to add in a man's point of view. Thanks a bunch, Laurel
CommentFor the African American woman who inquired about the vulvodynia, I don't think thatfair skin has a lot to do with it. I know that the Vulvar Pain Foundation is worldwide. Idon't know exactly what continents are involved, but there are many women from Israel,Portugal, and Italy. While they are not african american, they certainly are not fairskinned either. This disease does not discriminate. And I am sure that we will probablysee more postings from others like yourself who suffer. Well Wishes-laurel
CommentThank you for the website on the Cornell discovery. I was a bit discouraged that it wasover a year old, but mostly felt encouraged that there are doctors out there working onpossible causes and cures. When I first got this disease 14 years ago, NO ONE knew what itwas. When I went to my local ER with an allergic reaction after a surgery in Detroit, Ihad to explain WHAT vulvodynia was, WHAT surgery I had and they STILL had to call Detroitto figure out what to do with me. It's hard to believe, but we are making progress.Although I'm not a member of the Vulvar Pain group (can't remember the correct name) itseems like they have done a great deal to push us closer to a cure. As far as the immune system debate goes, I personally believe that there is a problemwith our immune reactions. As far as whether or not it's overly or under active, I'm notsure it really matters. Assuming that it's over-reactive (thus causing the inflammation),wouldn't my body be fighting off all other sorts of diseases? Instead, I get sick quitefrequently and have most of my adult life (right along with my vulodynia symptoms, infact). Maybe it's just that it's mis-firing. Has anyone ever tried a macrobiotic diet? I can't help but think that if we could giveour bodies the perfect nutrition, exercise and rest, in other words, give our our bodiesthe ideal conditions to heal, that it may just heal on its own. -Cheryl -Cheryl
CommentStephonie, thank you so much for getting back with me. I thought I was the only africanamercan on this site that suffers. I'm sorry that you suffer as well, but it's just kindof cool having a sister to talk to on here. You know how that is. Anyways, I just want toknow how did you get this horrible crap do you know? I'm 27 soon to be 28 and I got it 2years ago when I got pregnant. That changed my whole entire life! I was such a cool andvery energetic home girl. I've changed a lot because now I can't go out and hang like Iuse to because I don't feel like going out and all that. I don't suffer with the tears andthe itchiness and all that vulvodynia stuff anymore. I've had that under control for like9 months now. It's just the vestibulitis that bothers me at times-the pain inside and allthat mess! But I just had surgery 11 /2 weeks ago and I'm feeling better everyday. But thepain seems to come back around just a couple days before and a couple days after myperiod. Other than that, I don't hurt much. I had a partial Vulvectomy. I'm very glad thatthe area where it hurted the most at has gone away. But now it's just one area that causespain sometimes and I hate that! What state are you from and how does your man handle it?How is your life now that this has come into it? To everyone who commented on the fact that I was interested in finding an africanamerican girl who was a suffere to, check it out; First of all, I'm not trippin off noneof you guys! I'm not a racist or nothing like that! I just have never ever heard of thisdisorder and when I was told I had it, I was told that it was rare for any of us to get itbecause it's a caucacian girl disorder. I also heard that the lighter you are the moreeasy target you are of getting it. I can't understand why or how I got it because I'm adark complected sister. I feel bad for all of us who suffer no matter what color you are.And I mean that from my heart!!!!!!! But I just needed some comforting words from asister(african american female) who suffers just as I do and whom I can relate to in a lotof ways. Stephanie, please don't hesitate to message me back. Thanks! How long have you and yourman been together?
CommentJennifer: Believe me, if I am fortunate enough to get pregnant I will carefully weighvaginal vs. c-section delivery. One thing that leads me to believe that I may not have anyfurther problems is actually quite comical. I traveled through Morocco last November andtook a camel caravan into the Sahara. I never thought I would have been able to survivethe 2 hour journey without a flare up, but I did. I know it sounds sort of funny, but mosteveryone in the caravan was complaining of pain down there and on the butt. :0) By theway, the Cornell Study does refer to a subset of women who do have bacterial infections. Iwish I had the time to type the whole damn thing out here, but it is 5 pages of tiny type.I wish Dr. Glazer would include it in his website, as it also refers to some of the workhe's doing. Dr. Glazer, if you read this, it is the paper published by Jeremias, Ledgerand Witkin. Lynn: Do yourself a favor and get tested for the gene. Tell your doctor that the uniquedistribution if interleukin 1 receptor antagonist alleles among women with vulvadyniasuggests that a polymorphism in this gene may be a factor in influencing susceptabilty tothis syndrome, the severity of symptoms, or both. I think you are a good candidate forthis gene since you stated that childbirth brought on the symptoms. If you do have thegene, there are specific medications which you can take that will help you.
CommentMy wife is thoughtful and aware of my sexuality. With so many of you suffering it seemsimpolite to mention our specifics but you asked. When we aren't arguing over the kids,family or money we sometimes have sex in one form or another every couple of days. Thethough of a tear is constantly on my mind. I get pleasure from giving her pleasure alsoand we do not restrict ourselves to intercourse. When intercourse does take place it ismore often than not in a missionary position, very slow and gentle. I make a real effortnot to put too much pressure towards the base of her vagina. I sometimes stop and look toshe if she has torn, in which case I refuse to go any further. This really bothers her,she will say don't stop it doesn't hurt and so on but I just can't continue. I have such amix of emotions, the force of my own sex drive and the love for my wife and the thought ofhurting her. I,m no movie star but she does like being sexually close, she has said itmakes her feel a part of me. Now I'm not stupid I know there are many reasons she willhave sex with me, the celebration of our love is just one. Somewhere in the back of hermind she is aware of my constant desire and must be accomodating me for those reasons. I'msatisfied to just hug and kiss, although the though of love making is always on my mind.Even before this illness when she did not tear I would be full of guilt for wanting tomake love so often. I could go on as to why I have such a strong desire but there is nopoint. Suffice to say in spite of the tearing we seem to get intimate at least every threedays. Sorry if that was too personal for those sick of hearing it, but someone wascurious. We are always thinking sex and judged be our ability or lack of. Seems sooverrated by our society. I just wish we could all hug and be at ease with ourselves. Heyit's one thirty in the morning , I just had gum surgery and I'm a little out of it. Goodnight.
CommentMy preoprative apointment is schedualed for 1:00pm today. Thanks to this website andthe support groups that I am on, I have more information and have come up with some morequestions for my doctor. I would still like to hear from anyone who has had a VulvularVestibulectomy done. I am really nervous about this procedure and could use somereasurance/information from others who have done this. Also, has anyone else been toWisconsin and seen Dr. Jessica Thomason? This is the doctor preforming my surgery. Feel free to contact me at: christina_bunny@hotmail.com Christina
CommentThank you Frank for getting so personal. You are so understanding to your wife's needs.It makes me feel so selfish to think of sex when your wife seems to be so much worse thanI am. I am just so tired of living with this day after day and even on the good days, allI mostly think of is when the bad ones are coming. It really takes a toll on youphysically as well as mentally. I once explained that if I were cured tomorrow, two thingswould happen. First, for the rest of my life, I would always be thinking WHEN it was goingto come back. Secondly, and this sounds so strange, I would almost miss it, because it hasbecome such an integral part of my life, and everything that I do focuses around thiscondition, whether it be sitting for long periods, travel, dieting, cleaners, everything.I can't imagine not having to live like that should I be cured. But, I do get married in 4weeks and am trying to focus on having a good honeymoon and. I don't want my fear to wreckthe mood, and it has been months since I last had intercourse, so I am a little nervous!Frank, there should be more men so compassionate and deeply caring towards another'sfeelings. You are a good man. I wish your wife the very best-laurel
CommentLynn, Sorry it took so long to message you back, I don't have a computer @ home only @work. I live in Mississippi, and you are right, I was also told that many blacks don't getthis disease. Apparently, it doesn't matter what color you are, it seems to affect a lotof races. My husband and I have been together for 3 years and married for only 11 months.We were only married for 3 months before I got this disease/disorder or whatever you wantto call it. It has been an awful 8 months. I have cried, complained and whatever else Icould think of and nothing has helped me. My doctor is very understanding and has justcome back from the University of Wisconsin that did a study on vulvodynia. I wish thatthey had found something for me up there that could make me feel better. I have tried somuch that I am just plain tired. Most of my problems are constant burning all through theday. I feel fine @ night when I am sleeping. I try to get up during the day and walk, butas soon as I sit back down there it is again. I have a cushion shaped like a donut sittingin my chair that helps me sometime. Now when I see clients, I just stand up so I can becomfortable. My husband is very understanding. I know that this is hard for him, but @least he seems to be dealing with it. At first he went to all my doctor appointments andeven helped me put on all those creams,etc. Then, he started to realize that I wasn'tgetting better,and he needed time. Sex is not that hard for me as long as I have plenty oflube. It's just that I'm not all that interested in it anymore. I think it has to do withthe Elavil I'm taking. When we do have sex, I try to make it as meaningful as possible. Ihate to see him suffer like this, but I believe that he also hates to see me suffer. Ialso believe that I am going to get better one day, so I am just going to take it one day@ a time. How many children do you have, and where do you live? I'll be checking in formessages during the day. I know it seems funny, but I also was wondering were there anyblack women in this guestbook. The things that I have learned from a lot of the ladies onhere have really helped me. Also, no offense to anyone, we are all sufferers which puts usall in the same group.
CommentLaurel, I am better. The antibiotics did the trick. My aunt has very low blood pressure, and I am sure if you two communicated she couldlearn alot, do you ever post your email? I think it was you, but maybe someone else, thattalked about how vulvodynia has become part of your identity. It is the same for me. Ihave been better for months, but still have fears of it coming back, so some of mybehavior is still in thevulvodynia mode. I do have days that go by that I do not thinkabout it, and then all of a sudden I think to myself "hey, I have not thought aboutmy vulva for days" it is a great feeling. That is why sometimes I go for monthswithout getting onto this website, I don't need to think about it everyday anymore, butcommunicating here keeps it on my mind. The thing is with the IVF I am going through, I amfearful, because I am taking antibiotics, and I will be going through a surgicalprocedure. Laurel, you are absolutely right that each lab has different definitions of normal.This is part of what I was trying to explain to everyone about the HPV diagnosis, and whyI think they should have the hybridinization done. And, why I was telling the PCOSpatients that they make sure the doctor treating them knows about the blood sugarconnection.
CommentIt is nice to see that you are improving. I love to read about success stories. Itreally gives the others hope when they have little left. I see it was your aunt that hasFM. Sorry about the reference to your grandmother, as I seem to have grandmother on themind since mine is very ill. I do see why you would need a break from the site if you arefeeling better. Kind of cleansing of the mind. I have only been on since March, but feelthat it is a great place to go and just let things out. I hate to complain all the time athome about my fatigue and pain. I think that goes without say anyway. Did you say that youwere considering having a baby? Best thing I ever did. In fact, I seemed to improve afterand have continued to do so since, of course I follow all diets and supplements, etc. Ithink the actual stretching of the irritated vulva during childbirth forced the body intohealing. I am desperately going to try this year if I ever ovulate again with this thyroidtreatment. I would have had another by this point if I were able to. Good luck with it.Laurel
CommentHi Stephanie, Too bad you don't have a computer girl. But I know how it is. Anyways, soyou are a southerner? That's cool. My husband is from Missisippi as well. He's from Mosspoint. But you were saying that you have constant burning all day; I want to know do youhave vulvodyina or vestibulitis? Or do you have both? Do you know the difference?Vulovodynia is the pain that happens on the outside of the vulva. Vestibulits is the painthat happens internally in your glands. You said that you tried lots of creams and allthat; But if you only have vestibulitis, the cream is not going to help any at all. If youhave vulvodynia, it;s hard trying to get a reliable cream that does not have any steroidsin it. I'll tell you my story and I hope this helps you. I have not suffered fromvulvodynia in 9 months now. I started to use the Vanicream and that took care of myproblem and now I feel so much better down there- no more tears, no more itchiness, nomore irritations. But the vesitbulitis is what I'm still trying to beat. I had surgery 111/2 weeks ago and the doctor did a partial Vulvectomy. That part where the pain hurted themost is now gone. But the top of my vulva, he opened it up and took out some damagedtissue and stitched it back up. That part is why hurts me sometimes. But it seems to hurtwhen I get ready to start my period. Have you tried Vanicream? Please try that. But I'vealso changed my body soap and now I use the vanisoap. And I've changed the laundrydetergent to Cheer Free. And I only wash my vulva every other day with that soap and Ijust use plain water on the other days. I hope you try the vanicream. I no longer rely onit as of about 3 months ago. It's all good. If you do have Vestibulitis, have you thoughtabout surgery? I love to walk as well. It's the only exercise that I can do until I gettotally healed. How long were you on Elevil? I heard that that's not good for anyone totake. I heard that no anti depresants are really good because in the long run, they'lleventually do you some damage. I have 1 child who is 7 years old and I live out here inArizona. When I sleep I feel just fine as well. I feel fine all the time as long as myperiod isn't comming and as long as I eat the right foods. I don't want this to be areally really long message cause I don't want to irritate anyone. So message me back whenyou can. Take care now.
CommentHi...just wanted to update everyone. I got my results back from Dr. Toth's office. Myculture came back negative for mycoplasma, chlamydia, yeast and aerobic bacteria, but Ihad a heavy growth of Actinomyces israelii (an anerobic bacteria). My husband's culturehad streptococcus intermedius and propionibacterium granulosum (2 types of anerobicbacteria), and chlamydia. Toth said that he believes the reason I didn't test positive forchlamydia was because I was taking clindamycin when I was seeing the dermatologist, andclindamycin is the drug of choice for treating chlamydia. He only did a vaginal swab test,so he said there may be chlamydia bacteria in other parts that didn't show up, like yourovaries, etc. I have had quite a few problems in the past few years with ovarian cysts,and a cervical polyp, which he also feels may be related to this infection. I didn't evenknow much about chlamydia...I had heard of it before but wasn't quite sure what it was,except I knew it was an STD. Turns out it's the most common bacterial infection there is,and one that is difficult to detect. Many times people have it for long periods of timeand don't even know it. Just some info about chlamydia I found on the internet: Chlamydia is the mostfrequently reported infectious disease in the United States. Though 526,653 cases werereported in 1997, an estimated 3 million cases occur annually. Severe under reporting islargely a result of substantial numbers of asymptomatic persons whose infections are notidentified because screening is not available. Chlamydia is a sexually transmitted disease(STD) that is caused by the bacterium Chlamydia trachomatis. Because approximately 75% ofwomen and 50% of men have no symptoms, most people infected with chlamydia are not awareof their infections and therefore may not seek health care. Up to 40% of women withuntreated chlamydia will develop PID. Undiagnosed PID caused by chlamydia is common. Ofthose with PID, 20% will become infertile; 18% will experience debilitating, chronicpelvic pain; and 9% will have a life-threatening tubal pregnancy. Well, just wanted togive you an update. My husband & I have to meet with him again to start the antibiotictherapy.. will keep you posted. Take care everyone.
CommentSusan, thanks for your message but I did not understand what you meant. You saidsomething about getting a gene test? Could you tell me more and help me understand whatyou were trying to say? Thank you
CommentBy the way, just an afterthought...both my husband and I have probably only had about5-6 sexual partners prior to getting married, and we have both been faithful.
CommentHi Lynn, I have vulvodynia, and I could not remember if you were the same Lynn who toldme to use the Vanicream and Vanisoap. Well, I tried it, but it hasn't worked very well.How often did you put it on and when? Anytime I use cream, the burning seems to get worse.I bought some cheer free last night, so I'm hoping that I can get some relief from notusing washing detergent with perfume in it. I will continue to use the Vanicream. I haveanother dr's appt on Monday. Hope she has come up with something else. I have been onElavil for 7 months. I really don't think it is helping me, and I sure don't want ithurting me. I told my doctor that I didn't want to be on it anymore. She said we wereusing it for pain. Maybe she will try to wean me off soon. I do want to have kids one day,but not right now. I am hoping that by the time I decide to have kids, I have found somerelief with this. Are you on the low-oxalate diet? I have started that too, but noimprovement. How long have you been married? I print out some of these entries so myhusband can read them. He always says that so many people are worse than me. I just wish Icould get rid of this burning and get interested in sex again. Let me get to my client.Message me back when you can. Take care.
CommentBecky -- what is PID?
CommentThought I would answer for Becky...PID is Pelvic Inflammatory Disease. I had tolddoctors for years that I thought I had PID, and the vulva pain was a result of thebacterial infection. Doc's told me over and over I was wrong. PID basically starts to scarup the upper reproductive tract..screwing up primarily your tubes and other organs. As Ihave said before, I have had miscarriages and an ectopic. Finally, after the ectopic, Ihad suregery...and I had scarring everywhere in there. The surgeon said it looked like itwas caused by a long standing infection!! This same surgeon, had told me he disagreed withmy hypothesis about my vulvodynia prior to my surgery. You can look up PID in the MMWR (you can see it on the internet...probably search MMWRSexually Transmitted Disease). What you will find is the federal governmentsrecoomendation for PID...which includes IV therapy.
CommentMy email address is loosiemagoosie@aol.com if ever your aunt wants to converse. Forgotto add that yesterday. regards, laurel
CommentLaurel...I just went back and read some prior postings. You don't ovulate? Had Idiscussed this with you? Did they do a FSH/LH test on you? This is VERY IMPORTANT.
CommentWait! Laurel, I just went back further and you talk about increased pain beforeovulation...what is the deal with you again?
CommentI have never had a FSH test. Do not even know what it is! I can tell you this. Thefirst time I ever got my period I was almost 17. After that it was another year before Isaw another. The most times in a year that I have ever gotten a period could not have beenmore than 3 or 4. I am 30. That is a sign of hypothyroidism, so now that I have beendiagnosed, I have to wait and see if they become regular. I have the option of getting aProvera shot to clean me out, however, I think this would be a mistake with the vulvarpain. But, one thing that tipped me off that my period was actually coming was increasedpain in the vulva region. I mean for up to 2 weeks with no let up in pain. It was always2-3 weeks before the thing came. But, since I am so irregular, I don't know if I wasovulating or it was just my hormones going haywire before ovulation as they always done.For some reason, the pain decreased when I had the flow. So, that is why I didn't mindbeing so irregular. I did not want to deal with days on end of pain every month before Igot my period. Of course now I want the damn thing so I can get pregnant. I just have tobe patient now I guess and see if nature will respond to the treatment. Do you feelincreased pain around your cycle? I know that members of the VP Foundation have attestedto the same thing. Thanks for the inquiry! I will look for your posting. Laurel
CommentHi everyone, I hope everyone is experiencing pain-free days. It has been a while sinceI've written and the pain and discharge I experience on a constant basis has remained thesame now for over 3 years. I think I have read about some VVD sufferers in Perth, WesternAustralia. There is a gynaecological awareness forum coming up this Saturday, 28 Aprilwhich you may be interested in attending. I won't be going as I reside on the eastern sideof Australia but I hope some of you can make it (I have a very good friend who isattending on my behalf). It's from 1.30pm to 4.30pm at Agnes Walsh House, King EdwardMemorial Hospital, Bagot Road, Subiaco. If you would like more information or to talk tome about my VVD experience, please email me.
CommentHi Stephanie, yes I am the sister that have been encouraging the vani cream. I'm sorryit doesn't seem to work for you. But it has worked wonders and miracles for me. I believeit's been part of my savior. If I totally improve this vesitbulits crap after I completelyheal, then the surgery would be part of my other savior. Okay, let me tell you how often Iwould use the cream. I'd take a shower without washing my vuvla with any soaps. I'd onlyuse water. I shower 3 times a day but I would only put a thin layer on my skin once afterthe morning ahower and then again at night after my night time shower. I've did this forabout 3 months. Then I started to only put it on once a day because I noticed that I wasimproving quickly. Just keep in mind that I never washed up with soap before putting iton. Plain water is just fine. I've done used it everyday til about 2 months ago or so I nolonger need to use it. It has took away that irritation down there that was caused byvulvodynia. I don't know how long you've been using it but if you use it everyday, youshould feel improvement after 2-3 months. It has never ever burned me nor irritated me inany way, It has always relieved me. Stephanie, if you do not suffer with vestibulitis,then I don't know why your Dr. have you on the Elevil. Elivil is for pain, yes but it'sfor the nurves that causes you pain and Vestibulitis is the nerves in the vestibule glandsthat hurts. So I don't know why you take that if you don't have Vestibulitis. Maybe yourDr. knows something I don't know. Well for whatever it's worth, before I had the surgery,I suffered from Vestibulits really bad! I was always in pain! My doctor refused to put meon Elevil because he said that it would end up doing my body harm in the future. He alsosaid that it can cause muscle damage and that just scared me right there. But hey, somepeople take it and say it helps them and have been for years. But I just couldn't risk it.No I'm not on the low oxalate diet. But I do try to follow it sometimes. I have my owndiet thing going on. I just try to stay away from foods that I know will hurt me that'sall. I've been married for 3 months now. What kind of couselor are you? Sometimes thiscrap have me feeling so miserable, I be almost loosing my mind! My husband be telling meto go see a psyciotrist or something but I can't afford to. Thanks for getting back withme. Just so you'de know, I usually check the postings after 6pm Arizona time becausethat's when I just be getting in after work. So when you post durring the day, that's finecause I can pick it up when I get home. Hope you get a computer soon. I'll talk to youlater girlfriend.
CommentSorry to hear about the condition you are in. I, too, used to have the discharginguntil I went on the low-oxalate diet. Now I get it only after a flare-up. Actually, thedischarging is usually the day after the flareup has subsided. It is usually a signal tome that everything will be returning to normal. Are you eating carefully? Best of luck,laurel
CommentHi all, it's me again. I forgot to let you all know that I was doing just fine for aweek now. No pain at all! But I ate a bowel of Total Raison brand cereal for breakfastthis morning and I've been in pain of and on every since. That's crazy! No now I have totry not to eat that cereal anymore. That's so strange how the healthiest foods are what wehave to stay away from. Bye now.
CommentLaurel, FSH is one of the hormones that is very important to our cycle. On day three ofa cycle the FSH and LH number should be in line or very close to in line (like both are at9 for instance, I don't know the actual "normal" numbers). FSH, is FollicleStimulating Hormone. It is what helps the follicles grow in the ovaries. The folliclescontain the eggs. LH, Leutonizing Hormone, is what spikes right before you ovulate. As yougo through menopause the numbers begin to get out of whack...the ratio begins to changebetween the two hormones, and you stop ovulating. This can also happen if you have PCOS. Ihave mentioned PCOS before, seems they believe that there is an underlying sugar problem.It is possible to have PCOS and just be very irregular. And, you are right that if yourthyroid is screwed up you can be irregular too. The question is what was you FSH/LH ratio?If you don't cycle it is possible he just did on a random day, instead of day 3. You wereseeing an endocrinoloigist, right? I feel fairly confident that he would have done thistest, but I would be sure. I would feel better if it was a reproductive endocrinologist. I mention this, because you had said so many of your thyroid tests came back normal. Iam not questioning your belief about the thyroid stuff...like I said, my aunt has said thesame thing for YEARS, and I tend to think women know their own bodies, but then my auntsFM started around peri-menopause. Hope that was helpful. I look for your resoonse. Jennifer
CommentHi Lynn, Sometimes this problem has me going crazy to. I can't talk to any of myfriends because they don't understand. My husband seems to be better with this now. Wewant to have a baby in a couple of years, and I definitely want to get off this elavil.According to my doctor, she gave me elavil to alleviate pain. I have pain sometimes duringintercourse but not often. When I do have pain w/ sex, I am scared to have sex again. Itusually takes me about 2 or 3 weeks to get my mind ready again. I have been reading that alot of people have no relief while on Elavil. Honestly, I don't think I need it. I havebeen using the Vanicream for 1 week today. I will continue to use it since it has noirritants in it. I will try to do the same way that you did and wash my vulva with waterinstead. I counsel abused and neglected children with the State of Mississippi. It's kindof hard @ first, but the rewards are that I have helped a child, and that makes all thedifference in the world. I hope that we can somehow beat this disease. It is socontrolling. My faith is very strong (I will leave my opinions to myself), but I justthink that one day all of this will be over and my life back to normal. I know it isdiscouraging, but we have to hang in here girl! Are you ever in Moss Point? I have severalfriends on the coast. My worse nightmare came true when I went to a funeral and had to getup in the middle of the service because I was burning so bad. I had to be called back inwhen it was time for me to sing. It was total embarrassment. My husband and I are takingour second honeymoon next month in Orlando. We were going to drive (we love to travel),but I don't think I will be able to sit down for that long. I am so happy to have thiswebsite. I can really TALK to people about this. I hope you continue to heal well, andmore pain free days to all of us. Message me back when you can. I hope to be getting acomputer @ home. I'm living in a TIMEWARP! :)
CommentDoes anyone know what lidocaine is, and why is it used? Also, Laurel, did you say thatbeing tired is a symptom of a thyroid condition? What about gaining weight? I also have abad sinus infection (allergy) right now. Do you have any suggestions as to what I shoulduse. I don't want to use anymore ANTIBIOTICS! I am really scared too.
CommentYou are right. Whole grains are high in oxalate. Also, raisins (except for the golden)can be irritating. A small cup of corn flakes may be okay for some if they want cereal.Hope you recover quickly.
CommentHere's something else to think about: I stumbled upon this website while "searching" for an answer to our problems: http://www.TheHealthyCure.com/chronicfatigue.htm This girl has supposedly cured her chronic fatigue syndrome by a routine which shedescribes on the site. One of the things she suggests is to avoid MSG (monosodiumglutamate). There is an interesting report regarding MSG and possible neurological symptoms at: http://www.fda.gov/opacom/backgrounders/msg.html I have heard some people say that Chronic Fatigue Syndrome and Fibromyalgia are"related." I have also heard people say that Fibromyagia and Vulvodynia are"related." Are ALL THREE related??? Who knows? But, it's something to thinkabout, so I felt I should pass it on to all of you and let you make your own decisionabout it. I think I will try to avoid MSG for a while and see what happens! Here's to better days for all of us. By learning all we can and sharing it with ourfellow sufferers, someday, we WILL find the answer! Deborah
CommentLidocaine numbs things temporarily. For instance you would receive injections oflidocaine to numb an area before getting stitches. Things that end in caine all dothis...xylocaine, etc. It can come in creams, oitments, injections, liquid to drink, etc.It works on the nerve at a local site. Stephanie, do you have an allergy problem or a sinus infection? Or, is it both rightnow, you allergies seem to lead to infection? Do you have chronic sinus infections? Didyour sinus infections start around the same time as you vulvodynia? This is to everyone, I am not necessarily directing this to Stephanie, but she remindedme of something. My sister read recently in Allure magazine that the HPV that causescervical cancer is now believed to cause mouth, tongue, and throat cancer. I have raisedbefore that I believe through oral sex that if you buy into vestibulitis being a bacteriainfection, that it probably affects your sinuses, breath, etc. I remember that Dr. Glazersquestionairre (I have not looked at it in over a year, I assume it is still on this site)asked if you suffer from bad breath. Well, I did when I had vulvodynia, and my nosedripped all of the time, although I did not suffer from sinus infection. So, I would say abad taste in you mouth that began during the onset of your vulvodynia is another indicatorit might be infectious. It is hard to know if the FM, IBS, vulvodynia is all connected. I tend to think it is,but so many women have autoimmune disease that it is hard to know if it is a coincidenceor not.
CommentOne more thing. Being tired is a symptom of hypothyroidism, but being tired is also asymptom of being depressed. It is hard not to be depressed when you are in chronic pain.Moreover, many of us suffer from anxiety, which tends to interrupt sleep, which can leadto being exhausted. I agree with Laurel that women should have their thyroids tested, butfrom what I know FM and Chronic Fatique (I kind of lump them together, although I guesssome people separate them) tend to start with flu like symptoms, and then it turns intosome sort of chronic state. That to me means that something happened. Some sort ofdefinite trigger. Think of HIV. Most HIV sufferers, when they first acquire the virus getsick with "the flu". But recover. They seem fine for a while, and then I don'thave to tell you about the damage HIV can do. But these "sick" symptoms aregenerally caused by something. I had fatigue, fever and aches from the injection I wasgiving myself of hormones. The first brand I used was repronex, it made me so sick. I amsure I was allergic to one of the preservatives in the meds. So, a chemical triggered myimmune response. The Cornell study is saying that there is a trigger to these type ofthings, but then the body stays in the hyperimmune state even after the trigger is gone. Ipersonally think it is more likely the trigger is still in our bodies....chemical,bacteria, virus, whatever. Just my opinion.
CommentJennifer, I do suffer from chronic sinus infections which I usually get about 2-3 timesa year. They are awful, and I usually get treated with Cipro or some other antibiotic thatgives me a yeast infection, but I do think that this is an allergy this time. I had sinusproblems way before I started to have vulvodynia. I also used to have repeated yeastinfections. I really don't know what brought about vulvodynia unless it had something todo with the antibiotics. Thanks for all the information that you give. You really do yourresearch!
CommentI was just reading the last few entries...just FYI, I also get sinus headaches all thetime. In fact I have one now. I would say I get one about every other week.
CommentIt does seem tha the sinus infections and the vulvodynia are unrelated in you. Sinusinfections are miserable. I would definetly wait at least 7 days before I would reach foran antibiotic. Having said that...the next time you do take an antibiotic for your sinusinfection you might want to try Augmentin as an experiment. Cipro used to help me if I hada UTI, but did nothing to help my vulvodynia. Zithromax (z-pack) is commonly prescribedfor sinus infection also, that did not help my vulvodynia either. Augmentin was the wonderdrug for my vulvodynia. Here is the down side....You run a high risk of a yeast infectionwith the augmentin, so you have to convince your doc to give you at least 2 diflucans100mg, that you can take day 2 and 5 of the seven days you will be taking the augmentin.This way you should be able to avoid the yeast infection all together. I suggest that everyone who sees the need to take an antibiotic for "otherreasons", pay attention to whether it helps their vula during the meds...after themeds you might feel more horrible for days, but it is important to note whether you feltbetter during them, and to try to be counteracting the yeast infection during theantibiotics, don't wait until after. If you develop a bad yeast infection during theantibiotics, even if the antibiotics are helping you, you won't know it. By the way Augmentin is a penicillin, so if you have had allergic reaction topenicillin previously, this one is out.
CommentHi Becky!
CommentJennifer, I will certainly ask my doctor about Augmentin. I am not allergic topenicillin, but I think this is an allergy and not sinus. I know those sinus attacks.Also, my doctor will always give me Diflucan because he knows of my history withantibiotics and yeast infections. By the way, I have used Zithromax before. I think itgoes something like take 2 tablets the first day and 1 tablet thereafter for 5 days. Ireally don't know why the vulvodynia came about unless it was due to the yeast infections.I have had them under control for about 7 months. Thank you for all your infromation andadvice.
CommentThanks for the info. Since I have seen Dr. Blanchard only once, I will mention it nexttime I go. In the meantime, I may get my period. I have been feeling crampier than usualand my appetite has been out of control for 2 weeks. Sometimes I get those symptoms andfeel that I am so close to menstruation, then it ends up going away. We'll see. My luck, Iwill have it for the honeymoon! Thanks again, your viewa sre very interesting. I t'samazing how educated one becomes when they have this condition, isn't it? We all soundlike we could be doctors! Talk soon, laurel
CommentIt is a nightmare trying to figure out what started the whole thing. You didn't have anew sex partner, or he didn't cheat, etc? Maybe you fall into that category that theCornell people are studying with the continued hyper response. Possibly your yeastinfections triggered the mess. (As you know I personally question the basis of the study)I can see why you would be very reluctant to take more antibiotics, it is completelyreasonable. When you had the yeast infections, did the doctor actually see yeast under themicroscope, or grow it in a culture...or did he just look at it and assume, or did youjust assume it was yeast? I don't mean to badger you...it is perfectly logical that youwere getting yeast infections from the antibiotics, but I believe that many vulvodyniasufferers are told they must have a yeast infection when they don't. It is just the easydiagnosis for doctor's to make when a women had discomfort on their vulva.
CommentLaurel, is Blanchard a rheumotologist, endocrinologist, or what? Am I correct that hispractices focuses on FM and Chronic fatigue?
CommentYou mentioned tiredness. Yes, it could be a number of things including depression. Andthe sinus infection as well. Also, migraine headaches. All could be a sign ofhypothyroidism. in fact, they could be fibromyalgia as well. Since my doctor believes thatfibromyalgia is an improperly diagnosed thyroid, let's just say that we will go with thethyroid issue. A good bookstore in your area will have a number of books on thehypothyroidism. I suggest that you set aside some time to go and read through these. Theyhave so much information and it makes so much sense. I think that you will benefit greatlyfrom reading them, especially them mentioning chronic sinus infections and vulvar pain.You can see if the other symptoms (the list is lengthy) fit your criteria. Sounds to belike you will find the info helpful. Also, the late Dr. Broda Barnes came up with thebasal temperature test which may help you see if you fit the category. I know I wrote itsome time in March or early April, so look for it and try it. Takes 10 minutes a day andis so simple to do. Nothing more than sticking a thermometer under the armpit, as long asyou remain still, and you are not ovulating, it is pretty accurate. maybe this will helpyou, I hope it does. My endocrinologist asked me if I was depressed. He says that Elavilis used too widely and has seen it cause a lot of problems in his patients who were notdiagnosed for the thyroid at first. I told him that I wasn't depressed, but there weredays ,especially in the winter that I felt kind of blue. I guess the winter is when werequire the most thyroid and if the body can't manufacture it, it leads to depression(although it can be year round). If a thyroid is what you have, hypothetically, then thattoo could be cleared and the Elavil would probably not be necessary. I have been onmedication for a week and am noticing a small difference already. Like, i would say tomyself in the morning, I am going to do food shopping tonight, or go to a movie, somethingto do with getting myself out of the house. But, come 3-4 in the afternoon, it was my downtime. I always wanted to just go home and do nothing. Already, I have been out and aboutand have had the energy and the will to do those things. I feel great. The fatigue isstill there, but climbing the stairs is not as hard as it has been, and I do not minddoing it so much. my vulvar pain feels pretty good (still there but I have had 4 pain freedays in the past week), but I don't know if it is the medication, so i am keeping my hopesat a minimum, but it is so nice to have hope after 9 years. Hope this helps you. The booksare fabulous! Good luck and let me know if they help.
CommentJennifer, I have had the same sex partner for 3 years, and I don't think that there wasany cheating involved. My doctor would do the wet prep and look @ it under the microscope.Several times he has said I had a bacterial infection. My gyn told me twice that I had ayeast infection when I started having this uncontrollable burning. It was only afterseeing specialist did he say I suffer from vulvodynia. Laurel, was that you who messaged to me about hyperthyroidism? I have terriblemigraines. They have gotten to be stretched apart, but the pain is horrible. I amdefintely going to ask my doctor about this condition, and hopeful,ly take some kind oftest to see if I have it. Also, I am going to Barnes & Nobles TONIGHT and see whatkind of books they have on it. You all have been so helpful to me. Thanks so much foreverything, and more pain free days to us all.
CommentI wish you the best! laurel
CommentTo the person who asked about Dr. Kenneth Blanchard. he is an endocrinologist. Hetreats for thyroidism in patients who swear they have the condition but lab testsrepeatedly show there is no thyroid condition. This man is located at Newton-WellesleyHospital, Newton Lower Falls, Massachusetts. Coincidentally, I saw Dr. Don Goldenberg atthe same hospital. He diagnosed the Fibromyalgia in January and I had to wait 8 months forthat appointment. I knew I had at least that. he p[rescribes the elevil which made menervous and shaky. That is when my primary care physician put me on the Guaifenesin, whichhelped minimally. I told Dr Blanchard I was diagnosed with the FM. He told me that he didnot buy into that illness. He said that he and Dr Goldenberg could argue until the cowscame home, but he was convinced that the thyroid diagnosis would fix all of myFibromyalgia. I do believe him. It makes so much sense to me. He also sees many of DrGoldenberg's patients end up in his office with a thyroid condition! If anyone isinterested in finding out more about the thyroid-fibromyalgia connection and DrBlanchard's beliefs, go to www.thyroidabout.com There you can look up a doctor in yourarea who may treat on the basis of symptoms, not lab results. talk soon, Laurel
CommentForgot to say that Dr Don Goldenberg was Chief of Rheumatology at Newton WellesleyHospital. laurel
CommentHi Stephanie, girl this condition is crazy! When I hurt, I'm always depressed no matterwhat! I hate this and I don't and never will understand why I got it in the first place!Girl, I had dreams and inspirations to be a model/actress star like my girl Brandy. I'vegone to modeling school, graduated and the whole 9. Then suddenly this came into my lifeand it's effected me in a very bad way. I don't be wanting to do nothing, go anywhere orjust sometimes I don't even be wanting to exist. But my husband and my son are the only 2reasons why I try to be strong. You said that you have a lot of faith. Well that's goodand all that, but I hate to feel this way, but I lost faith a long time ago. It justdoesn't seem to be working you know? I just know that I'm in this alone and I have to dealwith it with or without faith. I won't get all into that but you know what I'm saying. NoI've never been to Missisippi at all. But one day I'm sure my husband will take me. Hisdad and other family lives out there. You had mentioned in the previous posting that thevanicream burned you at one point. I don't know why, but maybe it's because your vulvawasn't use to it. But do me a favor, if it continues to burn you in another week, pleasedon't continue taking it. Mayebe it won't work for you like it worked for me. I'd hate tosuggest something for you only to make the situation worse. But just be sure to wash withplain water for the next few months before putting it on. You want to make sure the vulvagets the pure moisturizers from that cream and not get any irritants from your soaps whileyou're trying to get better.I love to travel to but I don't much anymore because I'm likeyou, I can't sit too long when I'm in pain. If I'm not in pain, sitting all day would bejust fine. But it's like, you'll never know when the pain is gone hit you, you know? Girl,where did you get that sitting pad from and does it really help you? I might need to getme one because I was in pain all day. Whenever I'd get up and walk around, the pain wouldgo away. It's just crazy! I don't get it! I'll talk to you later girl. Tell your man thatI respect the fact that he respects you and support you in all that you go through. Heloves you unconditionally and I respect and applaud him for that. Talk to you later girl. Just want you all to know that I got a response from Lifetime TV. They sent me an Emailthe very next day and told me that they thank me for leaving them a message about theVulvodynia and about them doing a show on "Strong Medicine" about it. They saidthat they appreciate my comments. But that's it. That's all they said. I got to go guys.Later! Ps. I think that we all can forget about Oprah's inconsiderate ass! I stopped watchingher show years ago anyway!
CommentHi Lynn, This disease/disorder affects us in so many ways. We just have to beat this.It's amazing to read about all these people who suffer. YOU ARE NOT ALONE IN THIS! We areall in this together. Please don't get discouraged girl! I know it is hard, but you haveto be as strong as you can for your husband and child. I'm trying to get where you are andhave a child. I don't know how that's going to work out. I have read that a lot of womenhave had relief after delivering a child and others have been worse. What I'm saying is(not trying to impose anything on you), be thankful for your family. I just hope one day Iam able to have children. This cushion was given to me by a friend who just had a baby,and she had to have an episiotomy. Apparently, she got it from like a hospital supply shopor something like that. I will ask her and message you back. It really helps me a lotbecause it is shaped like a donut, and it takes the pressure off the vulva. Some days arebetter than others of course, but the majority of the time it helps. I just feelembarrassed taking it to other places like funerals, weddings,etc. I am however going totake it on the plane when I go to Orlando. WHO CARES! As long as I am comfortable. I willuse the Vanicream for another week, and then I will stop if it still doesn't help. I didwhat you said and washed only with water this morning and put the Vanicream on. I feelpretty good today. Hope it lasts. By the way, Oprah is from my hometown here inMississippi, but we wrote her off a long time ago because she seems to not claim that sheis even from Mississippi. I finally got e-mail setup@ work. The address is above. Takecare Lynn. I'm on my way to the Coast today. You have to come visit MISSISSIPPI!
CommentI forgot to put the e-mail address in the last entry. Hi Laurel!
CommentHi Stephanie, I'm on my computer very early this morning. Anyways, I wish you the verybest while trying to have a baby when It happens. I have one child and I never ever wantedany kids. But when I got pregnant 2 years ago and ended up getting this disorder, I had toget an abortion because that's when the pain begun. It begun right in my pelvic, I wasalways in pain. I was only 2 weeks pregnant when I began to hurt. At 4 weeks pregnant, Ihad an abortion. I am one that never ever believed in abortions. I always believed theywere wrong no matter what. Then when I got pregnant, I knew that there was no one that Icould continue being pregnant and ended up being in more and more pain everyday. Til thisday, I think about when I got pregnant, the pain I began to have and when I had theabortion. I swear, it was all like a nightmare to me. But now I really do want a baby. Ihave a boy and I want a girl. I want a baby so so bad! But I don't even believe that I cancarry one for 9 months if I did get pregnant. I'm even scared to get pregnant. Anywaysgirl, I better get out of here and get to work. I'll talk to you later. Is that yourhotmail address? Is it the one at work or did you get a computer? Does anyone know how does the foods we eat effect our nerves? And how could if affectthe nerves in the vulva? It all just doesn't make since to me!
CommentI'll give ya a run down on my situation and then ask my questions. I am 35 years oldand have had this vulvular pain thing for 8 months. I have gotten several opinions. Itappears that I have vulvular vestibulitis because I am positive on the Q-tip tests andhave some redness around the vaginal opening. The apin to touch and redness overlap. Mypain is there all of the time although it does fluctuate in intensity - usually for nodiscernable reason. I do not have intercourse because it not only hurts during but it isthe after that is the killer. I am in extreme pain for days or at least was 7 months agowhen I last had intercourse. I was a competitive bicycle rider and can no longer ride mybike either. I live in Maryland. I saw Dr. Marinoff for an initial evaluation but without takinginsurance he is too expensive. He stated he needed to perform more tests (blood work,biopsy, etc.). Is a biopsy helpful in treatment or more so for research? I then saw Dr. Rosenshein in Baltimore. I tried the steroid creams and elavil (100 mg)with no improvement. He has recommended surgery to remove the inflammed tissue and use thevaginal tissue to cover the removed tissue. I then went to Dr. Buscema in Baltimore and heagreed with Dr. Rosenshein. I am still not convince that I do not have vulvodynia in addition to vestibulitis. Myleft labia has been hurting in both a burning but also an achy way. I have read severalarticles about surgery and they state that patient selection is the most important factorin determining surgery success. It appears that the surgery is beneficial in patients withpure vestibulitis and not vulvodynia. One article stated that if lidocaine temporarilytakes away the pain this is a good indication that surgery will work. So I tried 5%lidocaine and it not only did not relieve the pain about an hour after application I wasin excruciating pain. I was numb to the touch though. Not just the burning pain but andextreme ache in especially my anterior left labia. It is unclear from the descriptions in literature, etc. what constitutes truevestibulitis verse vulvodynia. Is vestibulitis only affected by touch or can it hurt allthe time as well? I don't have appointments until May to discuss this with my docs so Ithought I would throw it out to the group for any info or opinions. Additionally, I tried to get an appointment with Dr. Wesselman at John's Hopkins butwas told I must see Dr. Maleka (pain specialist) first. I saw Dr. Maleka and he statedthat he doesn't recommend surgery for any vestibulitis/vulvodynia. He stated that they trysympathetic nerve bloks (at the sacral nerve level) guided by CT or flouroscopy. I havefound no mention of this treatment in literature or on the web. Has anyone tried this orheard of it? I am thinking of trying it because it is a relatively low risk not veryinvasive (except for the needle) procedure. Just like get a spinal block for back pain. Anyway - if anyone has any comment or opinion on my post please let me know. Fellow Sufferer
CommentIf you did a lot of bike riding, I would have to say that it could have been a triggerfor you. I have not been able to ride a bike since I was a teen and I am 30 now. I alsohad to give up horses and riding because that left me in exruciating pain. I miss it somuch. I see that there are many who have benefitted from surgery, but there are also somehorrific stories as well. Some doctors do not like to go that route, or as an absolutelast resort. There are many on this site who have had surgery and have gotten well. Ofcourse, you should always choose a doctor who has an excellent track record. Many ladieson this site will be able to help you. But I do think that years of riding a bike damagedthe area. I, too, have pain on my left side of the vulva. While there is no redness, itdoes hurt to the touch. Also, the gland under the skin or the nerve on the left side aswell as the left sphincter muscle ache. It used to be on both sides, but with the lowoxalate diet and the ox-absorb, pain for the most part is just on that side (unless I amhaving a major flareup). Driving a manual transmission only aggravates it because ofconstantly pushing in on the clutch. I do know how you feel and heat applied to the areacertainly relieves symptoms. I have managed to well myself to about 70% in the last twoyears with no surgery. I feel that I am getting better each year, so it can be done butfollowing a strict diet is essential. You have to be patient too and that is so hardbecause recovery takes a while. Many opt for the surgery for quicker relief. In any casejust take the time to exhaust all options and I feel confident that you will get better.Best wishes, laurel Hi Stephanie!
CommentTo other Australian sufferers, There seems a distinct lack of knowledge and support regarding vulvodynia in thiscountry. If people want to email me we can think about setting up some sort of supportgroup, if only via some form of email group. My address is above. I've had quite a depressing week. I have an infection on the (keloid) scar where abenign tumour was excised from my neck last year and of course the doctor has put me onantibiotics. Thrush, which will exacerbate my vulvodynia is iminent. Either that or I usethe antifungal cream which will irritate me. I still haven't told my new boyfriend aboutthis condition!!!!!! Sometimes I think I can no longer live in this body. Anyway, like I said other Aussie girls drop me a line. I'm currently thinking aboutways to publicise this condition. Liz
CommentHi all, I just want to know if any of you have a friend or relative who suffers just aswe do? I mean because I live out here in Arizona and I just want to have a friend who is atrue freind and who I can go out with and talk to about my issues without them gettingupset at me when I hurt. My family acts shady with me so I don't be around them much. Idon't hang out with any girl freinds because I'd just rather hang out with someone whosuffers like me. I don't want to hang out with anyone who doesn't understand me when Ihurt. My husband and my male friend are the only 2 people who I enjoy being around andthey always listen to me and understand me when I hurt. I guess what I'm trying to say isI want a female freind out here. Is there any of you who knows someone who suffers and youtwo can relate in so many ways? It's hard being around any other woman who don't sufferbecause when you try to talk to them about it, they look at you like you'r going crazy andlike it's all in your head. I'm tired of that! I just want a female freind who'll listento me and we both can hang out and have fun together.
CommentDoes anyone know if there is a such surgery where you can get your complete vulva cutoff? I'm very very serious about this! I want to keep my vagina, but I just want to cut mywhole vulva off? I already know of such sugeries like Vestibulectomy and Vulvectomy but isthere a specific name for getting your vulva entirely cut out? What about woman who becomemen? Don't they get it cut off or no? Please someone let me know! I'm really consideringthis surgery if it exist.
CommentTo the woman who wants to have her entire vulva cut out... ARE YOUNUTS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Asuming that you are serious hear, the reason wemon have vestibulectomys done and gothrough alternative treatments is because surgery in that area can be disfiguring and canresult in even more pain(especialy with intercourse) then before. Belive me YOU DONT WANTTHIS! There are many alternetives available to you. Have you tried seeing a specialist?Someone on this guestbook could refer you to one in the area you live. There are wemon who have had surgery done with the purpose of actually repairing thedamage done who have had the surgery worse. The last thing in the world you would want isto have your entire vulva removed.
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CommentHi, This is to everyone, but especially Jennifer and anyone else who thinks this thing isinfection related. I often feel like my OVARIES ARE BURNING and right at the bottom of mybladder is burning. I even feel tender when I touch where (I think) my ovaries are. Today,I don't have much pain in the vulva area but the OVARIES!!! It feels like an infection andall of this started with me a few months after an invasive medical procedure that I hadthree years ago. I was fine after the procedure, then my boyfriend came to visit, we hadsex, I got a UTI and it all exploded from there. I am actually not too bad unless I havesex - then I go through weeks of metrogel, cephalexin (I have beta strep), estrace, boricacid, etc. until I feel decent again. But I refuse to live a celibate life. I am only 28and I have a wonderful boyfriend who is so patient and understanding - but there will onlybe so much he can take. That is why I WILL NOT give up. Please no one else give up either.Please let me know what you all think about the burning ovaries. I am very seriouslyconsidering going to Dr. Toth. The only time that I feel completley normal is while I amon my period OR when I am on metrogel!!! This got long...sorry. Stay strong everyone!!!
CommentYes I was very serious about having my entire vulva cut off and romoved. All it does ishurt all over! Ive gone to the doctor but it's the same thing, they'll offer mediction andthat's it. I don't want any medications. They are only going to damage me in the long run.I hate my vulva! I've wondered if there was a way where the doctor can remove it andsomehow give me something that will make another one grow back. How do men who have sexchanges get a vulva? I wish someone would answer that question for me. I would thinkthere's a way I can grow a new one.
CommentI'm interested in getting a low oxolate cookbook. Does anyone have that address that Icould log on to to purchase a book? Thank you much!
CommentA, if you feel better on metrogel, I think it is an infection. In my estimate threethings can happen during surgery 1. you can get an infection. 2. you develop scar tissue that strangles organs. 3. youdevelop RSD. But, metrogel would only help the infection. What was your surgery for? Can you email me instead? I will check the website for your entries, because if thereis someone who is specifically interested in the treatment I had, then I want to help.But, reading some of the entries has become very upsetting to me, so I was hoping to takeit easy during my IVF trial. I am not trying to discourage anyone who is specificallyinterested in the bacteria theory. Please feel free to contact me. I hope that does notseem selfish. A, on your next entry why don't you write if you are unable to email me, andI will continue to check the website regularly. Jennifer
CommentI am so sorry for the girl in Australia who is having a bad weekend. I feel your painand know what it is like. Hang in there!! We will all be so strong when we get throughthis (and we all will!). To add an opinion to the infection theory, I asked the specialist in New England--Dr.Elizabeth Stewart in Boston--whether she thought an infection was behind my vulvodynia,and she said she did not think so. she said a bacterial infection would change the PHlevel in the vagina, and although she never cultured for anaerobic bacteria, she wascertain the ph level would indicate such a condition. we both agreed, however, that theterm vulvodynia is a bit broad, and some of us are most likely suffering from differentfundamental conditions. A yeast infection triggered my initial flare-up, and Stewartthinks that the yeast is long gone but that my body cannot diminish the inflammation. Shehas been spending one day a week observing a pain clinic here in boston and she is veryinterested in new medicine that rhumaloagists are using to treat arthritus (anothersometimes auto-immune problem). It is a new drug that really helps diminish theinflammation in arthritus patients. She is getting permission to try this drug with someof her patients, and she wants me to try it too. i will let you know more later on. To the FELLOW SUFFERER-- I am just as confused as you are between vulvodynia/pudendalNeuralgia/vestibulitus. I too have burning all day long but only in the vestibule. So whatcategory am I in? Dr. Stewart in Boston said that I could be a candidate for surgery sincemy burning is centralized. I have heard very good things about Marinoff and would love tocontact him. The next person you should contact is Dr. David Foster at the University ofRochester. He is one of the only ones who is doing pure research in this area. He toothought I could be a candidate for surgery---although only as a very last resort. Yet theidea of having surgery down there is so scary, especially when so little is known aboutthis disease. But I am so frustrated since the anti-depressants haven't been working forme. Next, I am trying a muscle-relaxant used in cases of nerve damage. If anyone isinterested, I have the details on the drug. I am also about to get allergy shots to de-sensitize myself from yeast. has anyone evertried this? Lots of luck, lots of hope to us all............
CommentI just went back and read your entry again, I needed to elaborate a little more...doyou think that the surgery gave you an infection, then you had sex...which pushed it upyour urethra, and your boyfriend caught the infection? Then you take meds to fight theinfection, feel better, but wham...your boyfriend reinfects you? Do all cultures come backnormal for you? Did they test for mycoplasma and chlamydia. These are special tests thatneed to be specifically ordered. When I had Chlamydia I felt it in my ovaries/tubesimmediately. When you had surgery did they give you IV antibiotics, and then give you moreantibiotics, maybe oral, for at least a few days afterward? I think Toth might be a good idea, but check your records with your GYN, whether theyhave bothered to test you for the mycoplasma and Chlamydia. Flagyl orally might be abetter route for you, because the metrogel (which is flagyl) is only going to thevagina...your infection is probablly higher up in the reproductive tract. Probably yourboyfriend should get checked too. Again, it has to be specifically for Chlamydia andmycoplasma. Oh, and Trich can live high up and damage the tubes too. You can see Trichunder a microscope, you don't need to grow it. If your doctor does not have a microscopein his office....DUMP HIM!!! That goes for everyone. O.k. that is it for now. Let me know if anything stood out. Jennifer
CommentTO LYNN: You can get the low oxalate cookbook by logging on towww.vulvarpainfoundation.org. Hope it helps you.
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CommentTo Fellow Sufferer, I seem to have a similar case as yours. I have been diagnosed with vestibulitis, but Ihave a lot of daily pain as well, not just on contact. It has more of an aching qualitythan burning and it's worse on the left side, but it can vary. I too have had troubletrying to figure out what category I fit into in the spectrum of vulvodynia labels. Iwould like to get in contact with you so maybe we could share info. and ideas. If youwouldn't mind e-mailing me, we could go from there as it appears you don't want to includeyour address on this site. It is awfully hard to include one's whole story here, but Ithink maybe we could help each other. To Lynn--I just talked to a woman today that hadsurgery and she said it took almost a year before she started feeling good. Don't getdiscouraged--give it some time to see how you feel. I absolutely know how much of a rollercoaster this all is though. Becky
CommentThanks a lot Sue. You have a good evening. To Becky, thanks for that bit of informaion about the lady who had surgery. I feel gooda lot, but there's just been times when I wonder am I going to feel better % eventuallyyou know?
CommentTo the gal who wants her entire vulva removed. When men have a sex change they have avaginal cavitiy made out of whats left of their penis by plastic surgery. They dontactually have a vulva made for them, just tissue made to look like a fairly realisticvagina. It may look like a vagina on the outside, but there are no vestibulary glands, andno hymen. Men who have had sex changes often speak of how there is no feeling in there newgenitelia. Thats because they have none of the anatomy to make up the vagina, none of thenerves or anything. There is alot more to the vulva then skin and tissue, and no you cant just grow a newone. Please...find a specialist near you, even if you have to travel to a nearby state andget the apropriate treatment, and the information that you need. You may also want to look up Vulvodynia, and the vulva online to get some informationto educate yourself with.
CommentDr. Glazer, Are we going to start a new guestbook soon? This one is getting super long:)
CommentThank goodness I now feel that I have found a name for a condition that I have beensuffering with for 5 years since the birth of my daughter.. I started getting the sorenessafter i had to have two courses of antibiotics back to back and then had my old trouble ofthrush reappear and had numerous creams and pessary to clear it only to develope extremevaginitis. Eventually that subsided and now the only noticeable effect is redness at asmall patch in the opeing which prevents me from having intercourse because it is sopainful. This seems to flare up after every period and I am beginning to suspect is dietrelated I am going to try a more alkaline diet to see if this helps. Does anyone elsesuspect acid/alkaline balance? My blood seems to burn at times especially towards the endof my period
CommentSomeone has sent me a message about getting my vulva cut entirly off. I think I'drather not go through all that! I'm scared to be honest. I guess it's not what I thoughtIt'll be like. I do know of specialist in my area. I know a lot about this disease. I justwanted to know if there was a way that I could just cut the entire damn thing off so Idon't have to ever deal with the pain again. I thank you very much for your input. Iappreciate it. You have made me feel a lot better now because now I know that that issomething that I don't think I should do. Take care and thanks again.
CommentI think that you may be on to something with regard to the alkaline theory. If memoryserves me correctly, I remember some women in the Vulvar Pain Foundation saying that whilethey could not consume chocolate in any way, shape, or form (one woman could not even letit touch her tongue without flaring up), they were able to eat one kind that was alkali(ne). Go figure. I do not recall what the brand was but remember reading it in one of thenewsletters. laurel
CommentI’ve been meaning to post my story to this site for quite some time. Although,every time I sat down to organize my thoughts, I would become overwhelmed with sadness andpain. A very close friend, who has been my support through this tumultuous time, mentionedto me that a posting was placed on the site, that in some way involves me. When I readwhat you said, I was horrified. I too was referred to a female “specialist” in Milwaukee. I went to see thiswoman doctor and we agreed that surgery was the only way to recovery. I was told that thedoctor had an incredible success rate with her patients and she had NEVER made any patientworse with the procedure. It seemed that the odds were in my favor and I could rid myselfof the pain I had for so long. I trusted the doctor that these statistics were accurate. I had the surgery including the skin graft because sex was so painful I could not standto force myself continue to live that way. Some times I would be so sore for the next fewdays that I couldn’t wipe myself after voiding. I would use a hairdryer to evaporatethe moisture. Life that way seemed cruel to me. I never expected to enjoy sex the way mostwomen do, I just wanted it not to hurt so badly. I wanted to connect with my partner in away that seemed to be missing from our relationship. It had gotten so painful that Ididn’t want to see him. I would do anything to avoid sex. The surgery was a failure. I am very upset that you may have been misguided by thisphysician. I had the surgery only two years ago. The surgery can go wrong, and she knowsit. You have been lied to and now I wonder if I have been lied as well. I plan toinvestigate this matter further. If she is not telling people that the surgery can gowrong, than how can a woman make a good decision about her health? I feel that every woman needs to make her own choice and many women have improved fromthe surgery. However, it has made my life a living hell. My partner and I went back to the“specialist” and she said, “I am a surgeon, there is nothing more I can dofor you.” She gave me a few names but has otherwise not maintained any contact withme. I am terribly worse as a result of the surgery. This doctor should say that she had apatient that was debilitated because of the surgery. It is a possibility and it is thetruth. The pain I have is like a severe deep bruise and it just throbs. Any weight on mybuttocks makes it worse; so sitting is very painful for me. The slightest touch sends ashocking pain through my groin and the feeling is extremely raw and tender. I cannot wearpants, nylons or even underwear. Driving in a car makes me crazy. I go to work because Ineed the insurance but I can hardly stand to sit at my desk some days. I constantly fearthat I may lose my job because I am gone so often and I can’t work at my peakperformance because of the pain. I have a sleeping bag in the back of my car. I spend manylunch hours hiding under the blanket with a frozen bottle of ice water between my legs. Asyou can image, I miss a considerable amount of work just trying to find some type oftreatment that can help elevate some of the pain. In so many ways I am disabled and thisis a result of the surgery performed by the doctor you are seeing. I am not saying thesame thing will happen to you, but it can. I use to be a very energetic, athletic happy individual. I loved to bike. It wasnothing to put 30 or more miles a day on in a single trip. I loved to hike, camp and ski.I can’t bike, I can’t ski, and I can’t do any hard physical activitiesbecause the pounding throbbing pain in my vagina is intolerable. I have gone to the emergency room for pain treatment, I tried biofeedback, I triedphysical therapy, I have seen psychiatrists, I tried nerve blocks, and I tried multitudesof narcotics and anti-depressant drugs to fight the pain. I have spent thousands ofdollars in treatment. I haven’t had much success. My partner and I have been through a lot in the past two or so years. He complains thatI don’t smile and I am never happy. We have diverted from the relationship we use tohave and enjoy. I can’t participate in many of the things we liked to do together. Itbreaks my heart that I will spend the rest of my life this way. I sometimes wonder howmuch more we can take. There is a growing distance between us, and that scares me a lot. Ihope we can survive this. I think you need to ask the doctor you are seeing about me. I am worse because of thenerve damage resulting from the surgery. My life will never be the way it was before. Thephysician told me that I would be back to normal in 6 months. I was told that I would behaving comfortable intercourse by then. That was the last thing she told me before I wasprepped for surgery. She was confident that I would be a success. The surgery didn’twork out that way, and since then this doctor wants nothing to do with me. The statistics are in your favor, but the physician should be honest and say she had apatient that became worse as a result of the surgery. How can you make a decision withoutall the facts? If she denies making a patient worse from the surgery, get it in writingfor me. Good luck, if you decide to have the surgery. AA
CommentDear AA. I just finished reading your posting and excuse my ignorance, but I was alittle confused about if you had the surgery or if someone you know had it. I'm sorry formisunderstanding you, but anyways, your story has touched my heart! Litterally. I feelpain because you only tried to make things better but they only got worse instead. That'sso terrible! I know I don't know you personally at all, but if I knew you well and youlived out here in Arizona, I'd like to take you out somewhere special in hopes that youwill have a good time and enjoy yourself. You have been through a lot of hard times andcraziness! I always complain to my husband and my freind about me just having surgery 3months ago and only seemingly to been feeling 75% better rather than 100% better. But Istill have another 2-6 months to completely heal. I complain because it's been 3 monthsand I don't want to feel anypain period! But after reading your post, I feel so ungreatfuland sad for you because you're not even feeling better at all. I don't even know what totell you. I don't know what kind of advice to offer. I just want you to know that I docare and I hope that you find help, the right help some where so that you can startfeeling better. I don't want to sound wrong or nothing, but I'm wondering how long haveyou been with your boyfriend? Because if you guys havn't been together that long, and youare worried about him leaving you or whatever, and you don't feel comfortable with havingsex with him and feeling even more miserable about that, then maybe you should tell himthat you need some time to be alone, to be single for now and figure some things out asfar as your health goes. I'd hate for him to be in your way making the situation worse.Again, I hope I'm not sounding mean, but it's just what I'm thinking right now. When didyou have your surgery? Well I don't know what else to say other than my heart is with youand I hope all works out. I'm on this line pretty often. You can message me anytime if youneed someone to talk to. Good luck to you.
CommentTo the two people looking for doctors in ROANOKE, VA or ATLANTA, GA: I think someoneelse responded with a doctor in Atlanta (Dr.Peacock?) but that is not my doctor. I canonly suggest a doctor in Charlotte, NC, which is close to both places. She is Libby Edwards, a dermatologist who has a specialty clinic for vulvar disorders.She's in the information phonebook. I saw her, and although she didn't find anythingdermatologically wrong with me, it was certainly good to talk with someone who knew andunderstood this stuff. Good luck!
CommentHi AA, it's me again. I just reread your post and I now understand what you weresaying. So some girl on here saw the same doctor you did? Who is she? I want to read herpost. And you had the surgery 2 years ago? Yeah, you should be somewhat better since it'sbeen that long, but it sounds that things are still worse for you. I was like you too; Iloved excersising- arobics, riding my bike, weight training, jogging and all that. But Ican't do all that anymore. I can only walk and sometimes rope jumping. I hate not beingphysically fit like I use to be. I'm very petite and although I have not excersixed in 2years, others always tell me how I have a nice shape. But they can't see what I see when Ilook in the mirror. And they can't feel how I feel when I hurt because of whatever I eat.It's just all too crazy! So at least I can understand what you're going through with notbeing able to be physically fit as we were back in the day. After I completely healthough, I do plan to go mountain climbing and do low impact arobics. I think I'll be ableto do that. But no high impact cause that will be risking it I guess. Well just message meback if you like. You can always talk to me.
CommentNicki from NC, are you an african american? Just wondering. It's only 2 of us on thissite that I know of.
CommentTo A.A. & Lynn: I've been reading the many posts lately and taking it all in. Lynnyou have a great attitude, thinking of the future in a postiive manner. Planning toworkout again is a tough thing to think about when you have suffered with pain andsurgery. A.A. your story was very tragic but where there is life there is hope. I hope Ican finish without losing the connection. I was very ill as a child, many surgeries on myabdomen left me weak and sickly. Finally as a teen I started to exercise and built a goodbody. Then when I was 29 just two months before I got married I had intestinal blockagesand two surgeries. They cut my belly open and disfigured me bad, the chest I had worked onfor years had catheters plugged in it. I survived only to have I.B.Syndrome for years. Ieventually built up again and now in my forties my stomach has quieted down. I just wantedto pass on that life is a journey with ups and downs. You may be suffering terribly nowbut the future can be bright. Try to hang in there and be postitive. Lynn keep up the goodfight.
CommentJust an update on my wife. She still has not seen another Gyn. We have not had sex fora week which I know is not a long time. She said she felt itchy down there and last nightshe tried to look at her vulva with a mirror. She said while looking it just tore, samespot about the size of a Q-tip. I'm upset for her that she tears even with out sex. Thisis a crazy illness. I've pleaded with her to see another Dr. but she has this nothing canbe done attitude. Seems I can't talk to my own wife with out offending her so I hope Ihaven't offended any of you reading our problems.
CommentI was so saddened to hear your story. First of all, you cannot give up. You have to doeverything in your power to find a specialist who can offer some kind of help.Fortunately, you have access to the web and can do a lot of searching. It is veryimportant to see what kind of track record a particular doctor has before you go throughwith the surgery. I know that there is some way of finding those types of things out. Eventhe best of doctors can makes crucial errors. Secondly, I left my job in January. I hadbeen there for close to 9 years. Just driving there would set me off and to do that dayafter day was impeding my recovery. I have gotten better just being home. I have filed fordisability. They did not want to give it to me b/c I have Fibromyalgia to boot and theyhate to give disbility for that because it is not an actual disease, just an illness.Right now, I am appealing it. if I am denied again, I will obtain a Lawyer who will get25% of back pay if I win. If I lose, I owe nothing. I will do whatever it takes to getbetter. Now that I have been home on rest and heating pads, following my low-oxalate dietand taking various supplements, I do feel there has been a positive response. I urge youto look into disability. Or SSI, supplemental income to help if you must cut hours. Thereis no douybt in my mind that you will be able to collect. I feel that you will benefitfrom not having to sit and drive. Trust me, I know exactly how driving for 10 minutes canimpede recovery. I have the same reaction, any kind of pressure on the buttocks on theleft side can bring on a flare up. Although I do not know what surgery is like (I haveopted NOT to got that route), I can empathize with you. I have had this virtually all ofmy life (24 years, I am 30). It has made me a very strong person, physically and mentally.I am one of those people that will not let this get me down ever. I will be there until wewin this fight. You are in my prayers. If ever I find someone who can help you, I willpost. You are in my prayers. I forgot to add one thing. You should look into legal actionagainst this doctor, as you can prevent this from happening to someone else. Also, it iscomplete and utter ignorance to treat someone the way that you have been ignored by her.Please, you deseve better than this. If I were you, I would contact an attorney and have aconsultation. And fast. God Bless, laurel
CommentTO D.: Tell me more about this allergy shot for yeast sensititivity. . . I've never heard of this. What kind of doctor are you seeing for this? An allergist,and if so, did you go through all the allergy testing first? I went to an allergist a couple of years ago. The only thing he found that I havesensitivity to is chemicals. I am super sensitive to scented products such as deoderants,shampoos, hairspray, perfumed skin lotions, etc. Everything I buy is unscented. He did putme on an antifungal for a while. I also did the lo-carb diet for a week or so, but itnearly killed me. (Not literally!) I have a superfast metabolism, and I swear, I wasalways hungry while on that diet. I was miserable! So, tell me what you know about this shot. I've very curious! Thanks! Deborah
CommentFrank, I think your wife is very normal. How long has she been sick? How many doctorshas she been too? Do you blame her for feeling hopeless? I know it is difficult to watchher in pain, but her decision not to move forward right now is not based on nothing, it isbased on experience. I figure you feel like you cannot win, and I sympathize with you. Youwant to help, but she rejects it, and may even be "fed up" with you. Try not tolet her negativity stop you from pursuing help for her. Eventually, your information willcome in handy. I wonder if it might not be a good idea to develop a website, or a link from this sitefor men who have partners with vulvodynia, so men can talk about their frustration andsorrow. I always felt bad that for my husband it was like he lived in secrecy about it,and other men joked about sex, and worse talked about how when they got married the womenstopped wanting sex. I hate that stereotype, and I think that just made my husband feelworse, especially at the beginning of the disease, he felt like I was rejecting himsexually, but really I was in pain...I wanted to have sex too.
CommentTo Jennifer: Always good to read your take on this. My wife has only seen her Gyn andthe one expert Dr. Horowitz in Ct. . There is some balance between being very agressiveand seeing every Dr. you can and in my mind giving up. We have not been intimate latelybecause I am saying no, as much as I desire intimacy I refuse to have intercourse whenthere is a visible tear. My wife gets upset with me for rejecting her but I can't see thepleasure for either of us in what must be pain for her. I have tried to see this from herperspective and it is difficult. On the one hand she is in pain and wants to avoid furtherdamage and on the other she is trying to be close and satisfy my need for sex. I'mpassionate not harmful. I will continue to read and collect info and stories, hopefullythere is a light at the end. Right now I'm concerned , frustrated and at my wits end, buthey I'm a guy that's my best excuse. Take care.
CommentFrank, is the tear the only problem your wife has with difficulty in healing? Or couldit be something else in her body that she lacks that makes it so hard for the skin to makea full recovery? For instance, keloids. Just a thought. I scar very easily and it takes melonger than most to heal a wound. Take care. I wish her the best and hope that you findsomeone who can get her better soon, Laurel
CommentThanks Frank, I will not give up the fight eighther. I am doing much better but thepain always hits me when it time for my period to come. And also it'll hit me when I eatsomething that may have med/high oxolates in it. I am not on that low oxolate diet, but Ijust decided to try it because I'm tired of hurting whenever I eat(sometimes). If I go awhole day without eating and only drinking water, I'll be totally pain/discomfort free.I'm serious. But anyways, I have another few months to totally heal and I really can'twait! My first priority after it's all over with is to do some serious arobics. I want toexercise so bad but I know I have to wait a couple months just to be on the safe side. I'm sorry that you've gone through all those troubles growing up. You've had surgeryafter surgery and all at a young age. That's sad. I hope your wife tries the vanicream oneday. It prevented me from ever tearing again. She don't even have to put too much on. Justa thin layer on once a day is just fine. Good luck to you both.
CommentMy name is Shane and I am the boyfriend of a young woman that had a surgery done by awell known physician in Milwaukee. The surgery removed the vestibular glands and a skingraft was rotated to the surgical site. I would like to tell my side of the story and whathas happened since the surgery. In July of 1999 my girlfriend visited the physician inMilwaukee for vulvodynia. This is a problem that she had been dealing with since her lateteens. It had created some problems in our relationship, but we had dealt with problem.During the appointment the doctor told her that she could not believe she would havesexual relations at all with her current problem and that it was inhumane for her to havesex. I knew there was a problem but my girlfriend had not told me it was this serious.This was a very sad night in our relationship. I felt very guilty and confused. Soon mygirlfriend had set up a date for the surgery in early fall. We both had lots of emotionsin this time. The doctor said no one had ever gotten worse with her surgery. The surgerywas done on September 15. My girlfriend was in intense pain after the surgery. This was tobe expected we were told. To make a long agonizing story short 6 months later she had notgotten better. She was in much more severe pain than she had been before the surgery.According to her before the surgery sexual penetration was uncomfortable. Now it isunbearable and other activities such as bike riding and just sitting at work are verypainful. Where as before the surgery these types of activities were not painful. Thedoctor who had done the surgery said she could do nothing else for us and she was sendingus to a different doctor. We cried the entire way home from Milwaukee. Since then mygirlfriend has seen numerous specialists. None of them have helped with her pain. We gothrough good times and bad times. I have not been the perfect boyfriend. I know I havebeen insensitive at times. I have been confused, mad, sad, and very sorry at times. Wecontinue to fight along. I just wish some one could help us. Also I hope people realizethat this surgery is not with out risks.
CommentSomeone mentioned keloid scars, I scar in that fashion with thick rope like raisedscaring. My wife has had laproscopic surgery to repair herias and remove her gallbladder,her scars are almost invisible. That's another weird thing, she heals so well in otherareas why does the tear occur and reoccur? What is the skin in that region lacking? Agreat question, I hope to someday get an answer. Hey Lynn if you read this my wife agreedto try the Vanicream finally!!! That last post was difficult to forget as many are. I havetold my wife at least we have memories of intimacy without restriction or problem. I feelso bad for the young folks who are deprived of this basic joy and suffer so terribly. I amrarely at a lose for words but what do you say?
CommentI'm the one scedualed to have surgery with the specialist in Milwaukee. I am scedualedto go in on May 15th. I have read both of the posts from yesterday from two different people who have seenthis doctor and have not had pleasent results. Can you tell me a little more about your situation? Up untill now I have read nothingbut good things about this doctor, so I decided to go through with the surgery. Did either of the ladies involved have pure vulvar vestibulitis? Or was there anunderlying skin disorder? Where you actually made worse from the surgery? Or are you just not any better? I couldlive with going through with the surgery if the worst that happened was that I was nobetter off then before. Are we talking about the same doctor? I'm sure we are, but just to be sure, did you seeDr. Jessica Thomason? Are you saying that she has refused to treat you after the surgery? She told me that ifI was still having problems after the surgery, or if the problems ever came back, that Icould come back and see her and she would continue to treat me. To the boyfriend of the girl who saw this doctor: How long ago was it that she had hersurgery? You guys have me really scared now! My surgery is in two weeks! Please write me back soon and tell me more. You can leave a post hear, or email me in private at: christina_bunny@hotmai.com
CommentI'm the one who is schedualed to have surgery on the 15th with the specialist fromMilwaulkee. I have read the two posts left and I have some questions for you, I hope you dont mindanswering. To the boyfriend writting: Are you the boyfriend of the woman who had surgery 2 yearsago that just posted? Did this doctor actually make you worse? Or are you just not any better then before. Icould live with going through with the surgery only to find that I was no better off thenbefore, I just dont want to be any worse off for it. Untill now I have heard nothing butgood things about her and so I decided to go through with the surgery. Are we talking about the same doctor? I'm sure we are but just to check, is the doctoryou saw Dr. Jessica Thomason? Did this doctor actually refuse to continue treating you after your surgery did notwork? She told me that if I still had problems after the surgery, or if I had problemslatter in life, that I could come back to her for further treatment. I can understand her saying that there is not much left she can do, if the surgery isthe last option as she told me it was, then I would hope she exhausted all other optionsfirst (that was not ment to trivialize your horrible ordeal no one deserves what you havegone through!) Please write back! You guys have really scared me! My surgery is in two weeks! I really need to hear more about this. You can write me back on the Guestbook, or emailme at christina_bunny@hotmail.com
CommentI'm sorry if I sent the same essential letter twice, I got booted offline while I wastyping, and I didnt think the message got sent. Christina
CommentHello Everybody, I just came back from the doctor yesterday. No good news except she isgoing to wean me off the Elavil. It's not helping me anyway. She mentioned that she hasbeen consulting with another doctor about putting me on Neurotin. Has anyone had anysuccess with this? Also, she is going to refer me to one of the pain doctors. Do mostdoctors consider burning and pain together? I don't have pain, only this uncontrollableburning! Lynn, hope everything's going okay with you. Also, I think the Vanicream or thelow-oxaltate diet may be helping a little. I've been off work since Friday, and I had allgood days this weekend until I went to the doctor yesterday. Talk to you guys later.
CommentTo A.A.- I am so so sorry that you are in so much pain. I completely agree withLaurel--I think you should leave work right away and claim disability. If you relax for afew months, you might be able to calm your nervous system down. I would love it if youcould come to Boston and see Dr. Elizabeth Stewart. She is very booked up, but I couldtell her your story and try to get you in--you could spend a night in a hotel? Even if youneed to take out a loan--your health is number one! I too am thinking of you. This morningI felt so depressed that I could not get out of bed to face another day of burning. Then Ichecked this site, and was so impressed by the courage and support of everyone on here. Laurel-- have you ever taken Solomons HTO? he wrote and asked me to be in a pilotstudy, but I did not really know anything about it. Has anyone ever had bad results fromit? I am very curious. I think it would be a great idea to have a link for our husband and boyfriends to venttheir frustrations. Could we get Dr. Glazer to set one up? Does he read our messages? Debrah-- I have actually not begun to have allergy shots, but I have made anappointment to do so. Basically, I will be de-senitized from yeast, although I do not knowthe specifics. I had a series of allergy tests a few years ago, but I do not think he evertested for yeast. And maybe we are only allergic to certain types of yeast? I really don'tknow but I will get back to you after my initial visit.
CommentTo D: Thanks! I look forward to hearing how you make out with these shots to desensitize youto yeast. I hope it works for you! Deborah
CommentTo the Christina that posted on 4/17 and anyone else that I confused, The doctor you are seeing for the surgery has lied to you. I saw this doctor and I wasalso told that no one was ever made worse as a result of the surgery. All this time Ithought I was the first patient of hers that did not do well. I assumed that she was arespectable and responsible physician-one that would tell the truth to her patients. I hadthe same surgery you are having two years ago. The nerve damage from the surgery has madelife impossible. I am extremely worse as a result of the surgery and this physician knowsabout it. Please read posting on 4/29 for more information about the debilitatingcondition I now live with. I was also told that I would be having comfortable intercourse in 3 months. While Ididn’t believe that, I did believe that the pain I was having could be fixed by thesurgery. Today I can not wear underwear, pants or nylons. I can hardly sit. I live eachday praying to go home and spend another boring evening in bed with ice on the bare skinbetween my legs. I am on 2,400 mg of Neurontin four times a day, 150 mg of Amitripyline,and your choice of narcotics-none of which are giving me any pain relief. Obviously, I can’t have sex. But I also can’t do many of the things I loved.I can’t canoe for a long period of time because I can’t stand to sit that long.I can’t bike. I can’t hike rough terrain. I am restricted to moderate walking.And personally, that is boring. My boyfriend of 5 years is very active. We did everythingtogether. Now I pass over a lot of activities because I don’t want to be in pain. Itis a change we are still getting use to and hopefully I will someday be pain free. I thankgod for his support and more so, the support of his mother. She has held my hand throughmany hard times and encourages me to continue the fight. What I am most upset about is that this doctor told you she has never made a patientworse, when she knows she has. I am furious because maybe she lied to me. I was lead tobelieve that the worst that could happen is no change my condition at all. Now all I canthink about is maybe I was lied to and I mutilated myself because of it. If anyone has hada similar experience, what can I do anything to stop this physician from lying to herpatients? AA
CommentHey what's up Stephanie, Yeah I'm doing okay. Hust hangin in there. To Christina, I'm sorry girl but if I were you, I wouldn't even trust that doctor!There is no doubt in my mind that what AA And that boyfriend said was true. I don't carehow nice that doctor is to you everytime you go visit her. She just wants you to keepcoming back cause she wants to get paid. And after any surgeries that she performed hasgone bad, she don't care one bit. She got paid and that's all she cares about. That's allthat is. It pays to be nice right? Anyways, why don't you see if there is another doctoryou can see/or who can perform the surgery? Even if you have to go out of town; Can youtry that? I have a doctor who lives about 15 minutes from me, but since he's notcontracted with my insurance co. I go visit another doctor and he is 2 1/2- 3 hours away.If you are very scared to let her perform that surgery, you need to listen to your gutfeeling! Because if something goes wrong, remember this- there's no going back. I am so thankful that I'm not even, well I should say I'm glad that I'm having morebetter days than before since my surgery. Girl, just please think about this very hard.Good luck to you. Frank, you'll never believe what I've discovered last night when taking a shower; I'vedescovered a tear. I was surprised because it never hurted, burned or anything. I nevereven felt it. Well, I just put a small amount of vanicream on it. I'm sure that will makeit heal.It's getting very hot out here , it's already in the 100s. I know that I'm goingto have to start using the cream again only because so I won't get try and lack moisture.But I know that I don't have to put it on all the time, just once every other day would befine. I'm happy your wife have decided to try the cream. Good luck to her. Hope it doesher wonders. I've got to go to work now. Have a good day every one
CommentTo the Christina that posted on 4/17 and anyone else that I confused, The doctor you are seeing for the surgery has lied to you. I saw this doctor and I wasalso told that no one was ever made worse as a result of the surgery. All this time Ithought I was the first patient of hers that did not do well. I assumed that she was arespectable and responsible physician-one that would tell the truth to her patients. I hadthe same surgery you are having two years ago. The nerve damage from the surgery has madelife impossible. I am extremely worse as a result of the surgery and this physician knowsabout it. Please read posting on 4/29 for more information about the debilitatingcondition I now live with. I was also told that I would be having comfortable intercourse in 3 months. While Ididn’t believe that, I did believe that the pain I was having could be fixed by thesurgery. Today I can not wear underwear, pants or nylons. I can hardly sit. I live eachday praying to go home and spend another boring evening in bed with ice on the bare skinbetween my legs. I am on 2,400 mg of Neurontin four times a day, 150 mg of Amitripyline,and your choice of narcotics-none of which are giving me any pain relief. Obviously, I can’t have sex. But I also can’t do many of the things I loved.I can’t canoe for a long period of time because I can’t stand to sit that long.I can’t bike. I can’t hike rough terrain. I am restricted to moderate walking.And personally, that is boring. My boyfriend of 5 years is very active. We did everythingtogether. Now I pass over a lot of activities because I don’t want to be in pain. Itis a change we are still getting use to and hopefully I will someday be pain free. I thankgod for his support and more so, the support of his mother. She has held my hand throughmany hard times and encourages me to continue the fight. What I am most upset about is that this doctor told you she has never made a patientworse, when she knows she has. I am furious because maybe she lied to me. I was lead tobelieve that the worst that could happen is no change my condition at all. Now all I canthink about is maybe I was lied to and I mutilated myself because of it. If anyone has hada similar experience, what can I do anything to stop this physician from lying to herpatients? AA
CommentI think it is wise to go off the Elavil, as you have had no positive response. I had atrial with it for Fibromyaligia. 25 mgs a day and it made me a nervous wreck. I tried 10mg/day and still had that feeling. I stopped it. I, too, used to have that burning all daylong. Once I stayed on the low oxalate diet for about a year, it got much better. Evennow, I only burn sometimes, always about 2-4 hours after consuming a large meal, even ifthe meal is low in oxalate (especially meats). If I drink loads of water, it goes awayafter a few voids. I only drink water in my diet, occasionally some milk. It has helpedtremendously. Stephanie, do you drink a lot of soda? Too much corn syrup can aggravate.Also, stay far away from caffeine and coffee, and coke that has cocoa in it. You areburning I feel due to something that you are consuming. Also, if you are taking too muchcalcium citrate or Citracal, you may think about lowering the dosage. I weaned off of it,as that was the cause for me. Remember, don't go too low in oxalate or your body will makemore. Stand as much as possible. let us know how you make out. Best wishes and health,Laurel
CommentI tried HTO for about a year. I felt that it did not make a difference for me. It didnot help nor harm. But many feel it gets them over the hump, once they are stuck in aplateau. I think you should give it a go. I am braver now, eating more from the mediumgroup, and I feel I am benefitting further, so I may try the HTO again in the next fewmonths. Let me know how you makeout. Laurel
CommentLaurel, I used to be "addicted" to coke. I have let them go as much as I canbecause according to my low-oxalate diet, you're only suppose to consume them 3 times aweek with only 12 oz per serving. I do drink a lot of water, but right now I'm not sure ifthat's when I feel the best. I am going to cut out all sodas this week and especially tea(which I see is very high in oxalates) and see if that helps. I also have cut out allchocolate. I never thought about cutting back on the amount of Citracal I take. I'll seeabout that too. Did I misunderstand, or were you on the diet a year before you got somerelief. I know this takes time, but I'm getting impatient. I guess I just want this to beover. I'm standing a lot more now @ work, so I think that is helping too. Thanks so muchfor all your advice. When are you getting married? We're going on our second honeymoon in3 weeks. We were going to drive, but I don't think I will be able to, so we're flyinginstead. Good luck, and I will let you know how eveything goes.
CommentStephanie, you sound so much like me. How many citracal are you taking in a day? At onepoint I was up to 8: 2 at 10 am, 4 at 2 pm, 2 at 10 pm. At first, It worked, buteventually I started to burn and Dr Solomons told me to cut down on them. This did help,but I think the diet alone must have been enough, because I ended up going off themcompletely and got better. So, that is a possibility. Also, even though the diet sayssodas are ok, I found that they made me worse. Even in a small amount, although I foundthat I could mix ginger ale and some water or tons of ice and be ok. But only once ortwice a week. Now, I am sure that I probably could have it because I feel better, but Ichoose at this point to wait, as I have come so far. Make sure they are not diet!Chocolate is a bad thing, so avoid it altogether even in soda form. if you feel the needfor it, try carob from an organic store (it bothers me though if I have too much). Teasare a major source of flareups. I wouldn't even try the Bigelow teas. I bet you notice adifference by eliminating those from the diet. Try it for a couple of weeks and see ifthere is a difference. It would be great if you were better for your trip!!!!!!!!!!! Stickto the diet. Some do not see results for up to 2 years! By following it carefully, I amwilling to bet you will feel better. I joined the VP Foundation in 1995. I really noticeda difference after a year or so. Then I reached a plateau and could not understand whatwas wrong (besides the calcium). I was eating too much from the low end and was flaringup. Now, I am more willing to eat from the medium group, but I tell you white potatoes area major setback for me. It is smart to introduce one thing at a time, so you know what theculprit is. Don't give up. I am sure that you will get better. If you have a question on aparticular food that may be an irritant, ask and I will let you know what has been myexperience. One more thing, do you get burning at all in the face, hands, or feet? I didfrom the calcium. I get married in 20 days! We leave for the Bahamas on the 19th and marryon the 21st. Where is your 2nd honeymoon going to be? If I guess right, it is South likeFlorida, or the Islands? Have a great time!
CommentI just want to respond to the lady who was talking about the Dr in Milwaulkee. I'msorry to hear your story. I had the surgery last year and had almost a 100% recovery. Istill have some issues, and I have to keep in touch over the phone to get answers. I alsoknow of about 4 other women who had a successful surgery. I know that when she told meabout her successes she told me there were anout four people who were not helped by thesurgery. And I was told I had a 85% chance for a good recovery. So I felt I was aware thatthere might me a chance it would not help me. Did you also receive this information?Again, I'm not trying to put down how you feel. I can't imagine going through all that andnot finding relief. My prayers are with you.
CommentLaurel, I'm only up to 4 a day. Do you think that is too many from your personalexperience. I feel like I'm a medicine cabinet, but @ least I'm getting off the Elavil.I've never experienced burning in the face, hands or feet before, only on the vulva. I amgoing to be very strict on this diet and eliminate that other bad stuff. I will certainlylet you know before I go. Do you think that weight is a factor of vulvodynia? I had gainedabout 10lbs in the last two years which I thought was not so bad, but now I'm beginning towonder. Also, the Elavil made me gain a little weight. Well anyway, enough of that. Let'stalk about the exciting stuff. You are right! We're headed to Orlando then Key West. I amso excited. We need a break. I hope everything goes well on your honeymoon. I'm just soexcited for you. I love weddings! I know it is going to be beautiful. A lot of our familywere upset with us, but we had a big reception when we came back. I hope all goes well foryou! Talk to you soon.
CommentFrank, don't get me wrong, I want your wife to seek more treatment, I just understandwhere she is coming from. Think of the guy who smokes who just suffered a heart attack,and then continues to smoke. It is out of anger and hopelessness (and addiction) and thefact that it is hard to believe it is happening to you. I do want your wife to dosomething to try to help herself, because I think the tissue over time only gets worse.That is why I had suggested the water rinsing. At least it won't be dumping drugs intoher, or on her, and many people find dignificant relief, although it is true that somedon't. Does she have a best friend, sister, or cousin she has confided to, that maybe youcan talk to that will suggest seeing another specialist, or try the water, etc.? Maybe,she would hear it better from someone else. It is a sad fact that most of us block out thepeople closest to us. You are a wonderful husband, and if I like to believe she realizesit. I used to get sooo angry and dissappointed with my husband over my vulvodynia, and aday later I would be telling my sister how I know my hisband loves me, and that he isfrustrated too, That I did not know how he could do it better, but it seemed not goodenough atthe time. You have been through so much together. Finally to Christine. I have tried my best to say nothing about the surgery, but I amafraid for you. I have no idea how desperate you are, or how much pain you are in, but Ijust want to say that once you cut off your vulva, you can't get it back. I know that is astupid thing for me to say, I don't mean to say you don't understand that, but really takethe time to talk to other patients. Ask your doctor if she will give you names of otherpatients you can call. I know people that have had some success with this surgery, andsome that are much worse, with other kinds of damage. I don't know how long you have beensick, or how many things you have trued, but please be sure surgery is your last resort.
CommentLadies, my dermatologist told me about what may be a miracle cream for us. Shesuggested it for my disabled son who wears diapers. When I bought it, I looked at theingredients on the label. It has 16%Zinc Oxide, Peruvian Balsam (a healing agent), BoricAcid, Castor Oil,Mineral Oil,White Wax, and Petrolatum. I called the man who created it,he said yes the Boric acid was for yeast and that there is no fragrance in it. He said itis hypo-allergenic. I wanted to share this with you immediately. The name of it isBoudreaux's Butt Paste. Website is www.buttpaste.com and the phone number is1-800-368-7274. It is made in Covington, Louisiana. I will try tonight and let you knowhow it works. I am usually allergic to most everything.
CommentFour tablets does not sound like a major deal. But we all react so differently so it ishard to say. But I can tell you this. Timing them is CRUCIAL. If you take them when youroxalate levels are low, you are inviting trouble. That was my problem. Always I had themost pain between 2pm and 6 pm. Major burning! It may have been that the tabs I took at 2o'clock were unnecessary. I always had the least amount of pain in the morning after agood nights rest. But I think that it had more to do with the fact that I was not eatingfor all the hours I was sleeping. So, when I woke up, I was almost starting fresh withlevels at an adequate level for me. But I caould never get my timing right, even with DrSolomon's help. I think the best thing I did was go off of them and just follow the strictdiet. If you do not see results right away (most of us expect to), don't despair. The bodytakes time to adjust to all of these changes. I am glad that you are going to try it. Asfor the weight gain, I do not think it would be a major factor, especially 10 lbs. But, itcould have to do with a diet change like those rich in veggies. What did you say promptedsymptoms? I had an infection that Iet go. it was a combo of that and the antibiotics, nodoubt. I just came back from Orlando a few months back. Key West was last year's jaunt.You will no doubt have a great time. Yes, we are having the reception in June sometime aswell. We had the child, bought the house, everything backwards! We figured to avoid thebig church wedding. I think that we disappointed some, but this has always been my wish,so too bad! I will watch for your post to see how you fare. try adjusting the calciumtiming and let me know. Regards, laurel
CommentTo Jennifer: Thanks for the suggestion, she finally ordered Vanicream today and willpick it up tomorrow. This is actually a big move on her part and I'm pleased to see her doanything that may help. She does not confide in many people, I don't know if she isembarassed or just very private. Her sisters are involved with their own issues and fromthe way they speak sex is not something to incourage. I think it's a crazy way to thinkbut I wasn't raised in their home. I agree that the repeated tearing and rescarring willcause more damage. I'll continue to hold off intimacy until she heals, at least the skinwill get a chance. Even though this is a womens issue unless you suffer I believe it isdifficult to have the same understanding. All the years I had terrible stomach aches andwoke up anticipating the pain to hit , I got no sympathy from the guys I worked with. Whenyou have a cast iron gut it's hard to imagine the pain someone else is going through. Formany years my wife was very healthy and strong, she couldn't understand my stomach pain.I'm a lot more understanding of the pain side of this because of my past.
CommentHi all- For D. (or anyone else who knows): I am curious about the shots for yeastsensitivity. I have been suffering from Chronic Systemic Yeast for five years and triedeverything. My worst symptom is vaginal itching. It's been agonizing; it's beennon-existent, but it never goes away completely. It improves (slightly) when I takeantifungals and keep on the no-sugar-fermentation-molds-or-yeasts diet. I have not heardof shots for desensitization. Please tell me more when you can.... Thanks K.
CommentTo Laurel, I have pain in my right foot sometimes. It will come like once every 3-4weeks and last for just few hours to perhaps a day. I hate how that feels! One day my footswelled up and I was on crutches for 3 weeks. It's only in my right foot that I experienceit and even sometimes in my leg. This has been going on for nearly 2 years now. But I'drather take that pain anyday over the vulva pains. Has anyone purchased that Low Oxolate cookbook? Do they have good foods in there? Ijust sent out for one today. I hope it works for me.
Commenthello my name is tammy i am 22 years old i really need answers. i have been having backpromblems were my spine feels very bruised were i can't move it at all without it hurtingit also makes my legs very weak in the moring were i can't stand to long please if anyonehas any answers please e-mail me at awesome__frog@hotmail.com i have been to doctors butthey have been just ignoreing me if you live in canada and in toronto this is where i amif you know i any good doctors please let me know i am very desprite and in alot of painso please help THANK - YOU.......
CommentAre you Fibromyalgic? Have you looked into the thyroid theory? There may or may not bea connection. Very hard to say. It could be rheumatoid, or possibly gout (too much uricacid in the kidneys usually caused by kidney disease or hypothyroidism). You may want tolook it up on the web. have you tried that? I usually get a burning sensation, but havenever gotten swelling in the extremities. But you are flaring up for some reason. Try tofigure out if the two are connected, by keeping a journal and some small notes of what youate and what are your pain levels on a particular day. Let me know what happens. You willenjoy the cookbook! I had a small flareup this morning. I am sure that I had too muchwhite bread yesterday (3 slices). I bought it at an all natural store- flour, yeast,florida crystals, sea salt. I am sure it is the yeast that caused this. Very sensitive! Becautious for the same reaction. Also, I get a whitish discharge during or after a flareup.Am I the only one?
CommentNo one understands chronic pain, like a chronic pain sufferer. You look fine, you carryon your day, you smile, you know how you are supposed to behave, so you do that, but youfeel horrible. Has your wife voiced that now she REALLY understands what you went throughall of those years with your stomach? In Spanish, or at least in Mexico...there is asaying that losely tranlslates to "don't spit up into the air" meaning it mightdrop back on your head. I don't mean to assume that your wife was not understanding ofyour illness, but I find in general, especially people outside of the home (friends,relatives) talk when they do not really understand, they make judgements (say things like,"oh, Frank, he is never well, always finicky about his food, whatever) andeventually, maybe they will learn the hard way. It is a fact that most people only want tohear about you being sick for a short time, and then they lose patience. I was thinking Frank, when you had the stomach problems, how did she behave TOWARDSYOU? Did she want you to go from doctor to doctor, try new remedies, etc.? Her behaviorwould be a clue to how she expects to be treated by you probably. Also, I am not sure I understood, did you mean that her family does not talk about sex?It is amazing to me that people, even doctors, get uptight talking about sex, and illnessof the sexual organs, when they are older than 20 years old. I mean we are not 13. Mostadults have been having sex for years, some even have had babies, and I cannot believethey are so weird about talking about it. This goes back to what the one woman wrote about society, and how it inhibits ourability to get research and undersanding.
CommentHave you seen an orthopedic doctor (bone doctor) or a neuralogist? I hope you are notjust seeing GYN's and Dermatologists for weakness in your legs.
CommentTo Jennifer: I agree with much of what you said regarding how others tolerate a personwho has constant complaints with pain. My wife is a great lady and stood by me when I hadthe major surgeries. I spoke to the surgeons and then gave her the option of backing outof the wedding. The thought of spending a life with someone who has health problems is aserious one. She and I got married and have had many ups and downs together. I have beento the hospitals about ten times with severe abdominal pain. We have missed many outingsbecause of my gut problems and I'm sure it bothered her. She was never cruel about it butwhen we argue it comes up. Hey when you argue the worst comes out. The last three or fouryears she has been ill with gallbladder problems and suffered with the pain. I certainlydidn't want her to be compassionate from personal experience. Lastly the talk on sex.Years ago we had some issues with sex drive and I met with her Gyn. This Dr. did not wantto discuss the issue. I suggested a testosterone cream I saw on Oprah in passing, he and Iargued. The attitude was let's not talk about this topic. When my seven year old daughterwas two years old we noticed her labia closing up. I took her to the Peditrician andexpress my concerns for her adult life if this was going to be a problem. The Dr. assuredme she would out grow it and be fine. She also said not many Dads would be so open orconcerned. I feel shrouding something in silence does not lead to learning. My wife andher sisters were kept in the dark about sex and are still not encouraged to discuss it. Toall who read this do not suffer in silence, talk to your Dr. , family and friends.
CommentI would welcome any more thoughts or oppinions from those who have seen the specialistin Milwaukee Wisconsin, especialy if you have had surgery by her. My surgery is schedualedfor May 15th. Christina
CommentFrank, I cannot imagine. How frustrating to deal with a family that is so closed? Isthat the right word? I have friends that are deeply relisious and conservative, who I canstill talk to about this type of stuff. I guess it is a "family" thing as yousaid. Now, the doctor not being concerned about your daughter is disgusting! I am so upset.Does she have any discomfort? If your son's penis was deformed would doctors be sodissinterested? Can you believe this is the United States of America? You would think wewere in Afghanastan where women cannot be seen by doctors, because others should not see awoman naked. You have totally freaked me out. Hoefully, it is nothing to worry about, butthe doctor to be surprised that you are concerned? I'm sick, just sick. Come walk out on a limb with me....when I was researching vulva problems, I read a verydetailed medical book that described Lichen Schlerosis, do you know what that is? Anywayit explained that they felt there was a genetic componet, and they showed the vulva od a 3year old girl that was awful, and noted that her mother suffered from the same thing.Since I firmly believe this ailment is infectious, I reasoned that the mother had eitherinadvertantly infected the daughter during the birthing process, or while changing herdiapers, or God forbid, she was being molested by her father. See, most genetic illnesses,from what I know of strike at a similar age from generation to generation. I would assumethat adult women did not develop her Lichen Schlerosis in infancy, so why would herdaughter? It is like if I have the breast cancer gene in my family, and my mother had hadthe cancer when she was 40, no doctor or scientist would expect me to have breast cancerin infancy. I don't want to suggest that your daughters problem is related to your wife's.If she is not in pain, I assume it is a different thing, but you just made me think of it,and I thought I would share the idea. Is it possible that your wife's lack of sex drive was actually the early onset of thevulvodynia. Many vv women I know agree that at it's mildest you simply don't enjoy sex,and lose interest, and at it's worst you are in dibilitating pain. I hope the example of the LS did not upset you, again I am not trying your family fitsinto that scenerio. One personal question, that you don't have to answer Frank, are you Jewish? CHRISTINE, have you tried to ask the doctor's office for refferrals of other patientswho have had the surgery. I have had doctors ask me if I would be willing to talk topatients after I had undergone certain procedures, because they were apprehensive.
CommentTo Laurel, I am like you I am fine all night and in the morning but as the day goesalong I get high oxalate. I was tested for it by Dr. Solomon so I know my peak times. Ihad a reaction to the citrate so cannot take it I time oyster shell calcium. I have alwaystaken oyster shell becuz I had a hysterectomy l2 years ago so I can tolerate them. I am onthe low oxalate diet which does help some also. I also spray with water when I know mypeak is high this also helps some. My question to you is this do you find stress willbring on flare ups. Are you pain free now just on the diet. I started the diet in Sept. soI have a few months on it, I know it might take a year or so for it to really work so Iwill keep trying. I also am a member of the VP Foundation which does have some goodsuggestions. I try to eat some medium oxalate foods also and find they do not bother me tomuch. I have good days and I do have bad days also. Do you have any good suggestions as towhat else I could do. Mary
CommentI am not yet pain free, but I have more and more good days, so it is encouraging. Istarted the Ox-Absorb a few months back and find that it does help also. Are you takingthose? Now I am taking Synthroid for an underactive thyroid. Since vulvar pain can be asymptom of that, I am hoping that in time, it helps me even further. You are new to thediet, so just be patient and wait (easier said than done!). I find that when I am flaringup or feel one coming on, I apply heat to the area and it does wonders. I used to onlywant ice and that helped, but heat promotes circulation to the area and it can take awaypain as quickly as it comes. I suggest doing that. If you are fortunate to have a jacuzzi,all the better. On vacation in Florida, I flared up bad, but the condo had a hot tub. Igot in for 1/2 hour and came out and I was fine. Wish I had one here! Take care, laurel
CommentTo Jennifer: I did not mean to suggest my daughters' Dr. was insensitive, rather shehad seen this before and it did not alam her. She said my daughter would out grow it andshe is fine now. the matter of libido is a complicated one. From all I have read and seenmost women have a tough time going from the " Mom " mode to that of wife andlover. I had and still have a strong sex drive , there must have been times when my wifewas irritated in addition to being stressed out. The signs of Vulvodynia may have beenthere but never the tearing and not to be graphic but we were very physical when makinglove. Now it is a delicate procedure. I do not blame my wife or curse the darkness, ithappened and we must adjust. I'm not Jewish but I am no longer a practicing Catholiceither. I just felt like a hypocrit sitting there while the priest would degrade women andstate that divorce is a sin. I have not stopped my family from going to church but I donot want them to think I agree with what is said. Plenty of folks get married only torealize they are with an abusive spouse. I do believe a a superior being but don't believestaying in a bad marriage was the master plan. I also do not agree that a wife should obeyher husband, come on I'm a guy but I'll admitt I sure don't have all the answers. My wifehas corrected me plenty and rightly so. I want my daughters to be with gentle respectfulguys who will be faithful out of love . Sorry I got off the subject. I do think my wife'sfolks meant well in their approach to sex, at the time it must have been the best theycould do or think of. I'm open about sex and invite any questions, not that my kids takeadvantage of it. I just let them know it is not something dirty or degrading, but rather abeautiful thing between people who care. Bye.
CommentFrank, I am sorry that I misunderstood about your daughters situation, and VERY HAPPYthat she is fine. I agree with your views about being open, sex, etc. Keeping issues in the closet is sosad to me. I think that not only should people reach out to help others, but that peopleshould be comfortable reaching out for help. My husband's family is very"private" and I see them suffer, because of it. Moreover, they seem to be morejudgemental than what I am accustom to, and I have always related that to the fact thattheir eyes are closed to the real world. It is sad to me, because they become devastatedmore easily when someone in the family makes a mistake, or winds up being"different". Moreover, when one of them needs help, they don't ask for it out ofshame, so they are isolated. I am probably not explaining myself well, but I won't takeyour time going through all of the crazy things that family has endured. Catholic, Jewish, just about the same, especially in the Northeast. I hate tostereotype, but you had used nudge a while back and I got curious. Doesn't mean anythingto me either way.
CommentOops, hit submit too soon. I think Judiasm is the only western religion that allowsdivorce. I agree, howcan it be that God would want you to spend your life with an awfulperson, on a decision you probably made when you were 23. Having said that I have beenwith my husband 10 years now (married for 8 of them) and I hope I am wiith him forever. Even though my mother-in-law is a VERY RELIGIOUS, goes to church at minimum once a weekCatholic, she is very understanding of pain, and health issues. She is very conservativeabout sex, but I have been able to talk to her about my chronic vulva pain. It is twodifferent things to her I think. Just because it is a sexual organ, she doesn't get thatall screwed up with the sex stuff, know what I mean?
CommentTo Jennifer: Yes I know what you mean. This exchange has been enjoyable. I was raisedin the Bronx and lived people from many different religions and cultures. We were once theonly Catholic family in a building of Eighty Jewish families. I have had a very diverseupbringing. I would like to think I have learned a little from all the folks I have beenaround. The Bronx has so many different groups, Irish , German, Italian ,Jamaican, etc. .Even though my folks are Italian American we were raised eating all sorts of foods andexposed to all sorts of cultures. My wife was born in Canada and lived most of her life inStamford, Ct mostly Italian folks. Hey the Vanicream is here, I'm not expecting miraclesjust happy she is showing some effort. Take care.
CommentTo Laurel, Thank you for getting back to me. I have not tried the OxAbsorb , with thecitrate and that it messes up my metabolism and I get a reaction. I have to be careful asto what I can try. As to hot tubs they are wonderful but unfortunately I have rosecea andhot flares up my face. It is to bad that us women do not just suffer with vuvodynia wehave other conditions that come along with it such as IBS, fibromyalgia, arthritis and whoknows what else. I will continue to try the diet. Maybe someday we will get lucky andsomeone will find something that can really help us all. I think you said you wheregetting married soon so great happiness and have a wonderful trip.... Mary
CommentThanks for the kind words. I forgot to add that I am not quite sure if stress flares meup personally, but many swear to it. I am by nature not a very stressful woman, so mystress levels are at a minimum for the most part. I know what you mean if you said thatyou had IBS. The thyroid causes it for me. And the joint and muscle pain too, so I knowwhere you come from! The ox-absorb has not given me any side effects. it is supposed tohelp constipation, but it really hasn't helped that. I get the diarrhea sometimes afterdays on end with no bowel movement, then all of a sudden I am cleaned out. Then the cyclebegins all over. Very frustrating. My doc says that the Synthroid should help me but itcan take up to 2 years! But I think you should try the ox-absorb. Start with a smalldosage and see if you are okay, then add if you can tolerate it. Good luck-laurel
Commentcan someone answer a couple of questions? What does the boric acid used for-yeast? Arethey available over the counter or prescription and what is in them? Also, what is theVanicream's purpose and how is it obtained? What is in that? Dosage? Thanks inadvance-laurel
CommentTo Laurel: My wife has used Boric acid vaginal suppositories a couple of times . Theyare used to correct a yeast infection or overgrowth. The Boric acid restores the acidicbalance of the vagina. A compounding pharmacy can make them up from a prescription usually600mg Boric acid there are other ingredients we were told. The Vanicream is a moistureskin care product, I'm reading the container right now, made with purified water, whitepetrolatum, ceteral alcohol proyethelene glycol etc, etc. some of the ladies apply it tothe sensitive skin of the vulva to aid in healing and to prevent some of the irritationassociated to these illnesses. My wife is going to try it and we hope it may lessen someof the tearing she experiences. We also tried Lipo-cream a skin barrier cream plus a bunchof others to heal and lubricate. So far nothing has helped but we keep hoping. TheVanicream is available without prescription at a pharmacy.
CommentThis is for Christina. I have gotten the surgery from Dr. Tomason in Milwaukee. It has been a success. I wasnot 100% right after the surgery. It's been about 1 and a half years now. Dr. Tomason toldme that not everyone recovered 100%. She mentioned that 4 people did not get better. Like I said, I was not 100%, but Dr. Tomason still saw me. In fact, She helped me withpain after the surgery and is still helping me today. I highly recommend the surgery. For the two of you who did not have a good experience,I am sorry to hear that, but I do know that Dr. Tomason laid out all of the facts beforehand. My fiance can even tell you that. Maybe, you were one of the first patients that itdidn't work for. That is a possibility. Another possibility is that you just forgot thepart about the people who didn't have a good recovery. I understand that you are mad, buthonestly, even if you knew that there was this risk, you still would have gotten thesurgery. I knew about the risk, and I still got it. I really wish this web-site would be more positive. I have not posted, nor will I postagain on this site. Best wishes to all.
CommentTo Jennifer, I have not asked my doctor to speak with other patients yet, although I amconsidering it. I thought I might actually find most of her previous patients hearanyways. I have heard from Five people so far that have had surgery from Dr. Thomason, andhave only heard of one failure (I think that the boyfriend that wrote in was AA'sboyfriend so I'm counting that as one untill I'm told otherwise). Everyone else reportedat least partial success. Like I have said before, I will be fine as long as I don't get any worse as a result ofthe surgery, I am well aware that I may not get any better as a result of the surgery, butat least I will have tried it. To the woman who just posted today who has seen Dr. Thomason, Thank you for youropinion. It is reasuring to hear that your surgery was a success. So far I have been veryhappy with her. The Estrace cream has helped tremendously, but unfortunatly it, and theTemovate cream did not bring the inflammation down in my Vestibulary glands (especialy theBartholin's). I have had this blasted disease for 8 years now and I MISS PAIN FREE SEX! Ihave tried just about everything and nothing has worked, infact the only thing that hasdone anything for me was the Estrace. I just feel that if there is a chance that I may getbetter, I would like to take that chance. I really hope you don't give up on this site, your support has been very helpful forme. You are sure right about this site not being very possitive. I don't mind hearing frompeople about their bad experiences because we can learn from them and because theasepeople need the support as much as I do, but some of the cattyness I have seen has beenvery disapointing. Thats why we need more people like you to keep supporting this site andto help keep things more possitive :). Thanks again for your positive input. Anyone else who has seen Dr. Thomason feel free to tell me your story. You can post it hear, or feel free to email me at: christina_bunny@hotmail.com Christina
CommentI was diagnosed with vulvodynia in 1991 and went thru hell and back dealing with thecondition, but came out successful thanks to the care of Dr. Richard Ried. After numerouslaser surgeries, experimental injections into my bartholin glands and the subsequentremoval of my bartholin glands, I was on the road to recovery by 1993. Now I am pain freeand able to enjoy a normal sex life. I still meet doctors who are not aware of thiscondition so when I stumbled upon these websites I knew that I had to write. It was such atramatic experience and one that no one can understand except others going thru the samething. It took me a long time to overcome the emotional and psychological impact of thisdisease, in fact I'm probably still dealing with some of it. Once my bartholin glands wereremoved, my pain immediately diminished. It was the last resort at that point but I wishit would have been the first thing done. I remember crying every night because of thepain, the treatments, the misunderstanding of friends and family and the overall feelingof helplessness and isolation. It was horrible, but there was hope thanks to a wonderfuldoctor. I would be happy to share my story or experiences if it can help other womenfighting to feel better. I'm great now! There is light at the end of the tunnel! BestWishes, Christine
CommentOkay, now that I submitted my comments I went back over other entries. I saw that therewere some not so positive situations mentioned about the doctor who treated me. I justwant to tell everyone that Dr. Richard Reid was a wonderful doctor whom I credit withsaving my life. I would recommend him to anyone and I would tell you to find him and flyto wherever he is currently practicing. I remember when I was undergoing treatment thatthe nurse had to take a call from Tokyo to coordinate with a patient who was flying in forsurgery to Southfield Michigan. I knew that he left Mich. a while ago and went to anotherstate but that was the last I heard from his office. I'm one of his success stories, Ihave always felt that he was my savior. He was always professional and caring. He even letmy boyfriend come in with me and showed him how to hlep me with my injections. I saw hisnurse technicians most often for follow ups and I was always pleased with the care Ireceived. Anyone out there...please feel free to contact me if you have any questions.Take care, Christine
Commenthttp://www.obgyn.net/cpp/articles/cracchiolo.pg2_0499.htm Here is an article that may be helpful to some of you. Frank: I think I understand the psychology behind your wife's reluctance to try newmeds. I think she's just scared that they won't work, thus intensifying her disappointmentlevel. Happy to hear she'll try the vanicream though. Let us know how it works.
CommentTo D: Good luck trying your new med. I have spoke here once before about Cox 2 inhibitors,which is what your new drug is.
CommentFrank, no wonder I thought you were a Jew, you are one by osmossis. The Italians andthe Jews in the Bronx grew up together. Even though their religions are different, theirdaily life, value of family, and outlook on life are basically the same. My parents arefrom the Bronx, they were born in 1943, they went to Taft and Roosevelt high school. About Boric Acid. Frank is right that it kills off yeast, but from what I understand itis an antiseptic, and kills off everything. I mean it would kill bacteria, yeast, probablymold. Just in case I have not talked about antiseptic recently....the difference betweenan antiseptic and an antibiotic is this. It is commonly held that you do not have to worryabout the "germs" developing resistance with antiseptics like you do withantibiotics. Antiseptics are things like bleach, alcohol, boric acid, betadine, etc. Theantibiotics work on the ribosome of the cell, the anticeptic just obliterates the wholething splat! It's akin to roaches develop resistance to pesticides, but if you drop a 200pound weight on it...it is dead, and probably no amount of evolution will ever allow theroach to resist death when a huge thing comes and "splats" it. CHRISTINE, I hope I have not been too negative about the surgery. I just want to besure you have a skilled surgeon, and I am happy to see that many people have responded toyou. Probably you would not get much more info from asking for a reference, so I think youare right, the website has provided you with references already. I personally know a womanthat had the surgery with a different surgeon. After surgery she was able to have painfree sex with her husband and she was VERY HAPPY about that, and felt it was a success.But, the surgery left her with other pain, she refers to it as "nerve pain" andshe has been on narcotics for years, and now pursues trying to end that pain. The thingis, she is still to this day, 3 years later, very happy with the results of her surgerybecause she has a more normal life. Lastly, I would always encourage women to follow theirgut feeling about what treatment they feel will be best. It is obvious that you are smart,and seem to know your choices. No matter how afraid I may come accross, I support whateverdecision you make.
CommentAA, for instance, should get tested for "the gene" I spoke about somewhereabove since the surgery only made her worse. If you have this gene, evasive proceduresWILL worsen your pain. If you are tested and do have the gene, getting rid of the pain*MAY* be as simple as popping a Cox 2 inhibitor. People with this gene respond to pain (ayeast infection, an accident, a surgery, etc.) and are unable to turn it off, even afterthe cause of their initial pain is long gone. I keep posting this because I believe thatMAYBE some of you can be helped by this information. It is worth a shot and shouldDEFINITELY be done before an evasive procedure (surgery, lasering).
CommentWhich drugs are the Cox-2 inhibitors?
CommentJennifer: Your post just reminded of something I read a couple of years ago on one ofthese sites (not sure if it was this one). One poor girl just loaded up her tub withbleech and climbed inside! Needless to say, she was onto other problems after that... Itjust shows you how desperate this disease can make a person. Do you think the boric acidwould have helped you since you found an infection to be the culprit?
CommentGood point Susan. I also think about the RSD link, and that surgery could cause otherpain. Maybe that is what happened to the person I know. I wonder if the gene test hasanything to do with substance-p which is related to RSD? Here's the thing. Surgeons tend to like to "cut away" things that are givinga patient problems. It is up to the patient to decide if they are ready to just cut itoff. Surgeons used to do tonsilectomies all of the time (now they have better antibiotics)they did hysterecomies at whim, now they can do myomectomies (remove fibroids) or blockblood flow to fibroids so they shrink. There is no doubt in my mind that barring anythingunusual, cutting away the painful "part" should help bring relief. I just have aresistance to cutting away in general. This is my thing, I don't like surgery, but I knowmany people that have no problem with it. They do surgery without even thinking about it.
CommentI wrote about Cox 2 inhibitors after reading this portion of D's submission: "A yeast infection triggered my initial flare-up, and Stewart thinks that theyeast is long gone but that my body cannot diminish the inflammation. She has beenspending one day a week observing a pain clinic here in boston and she is very interestedin new medicine that rhumaloagists are using to treat arthritus (another sometimesauto-immune problem). It is a new drug that really helps diminish the inflammation inarthritus patients. She is getting permission to try this drug with some of her patients,and she wants me to try it too." I don't feel comfortable discussing which Cox 2 inhibitors, because I think that shouldcome from your doctor. I am not a medical professional and don't want to lead anyoneastray. Plus, these Cox 2s will not help everyone with vulvodynia, just the ones with thegene.
CommentJennifer: When I was at the height of my pain I was ready to do surgery and in fact, Iwas screaming for it. My doc would only say "no, not yet -- I have more testing to doand the surgery is not for everyone." Good thing he wasn't as anxious as me, becauseit definitely would have made me worse. I have a follow-up with him at 1pm. I could askabout the substance P???
CommentThanks a bunch for the info on Vanicream and boric acid. Who gives the prescription forthe boric acid? Gyn or PCP? How mant do you take at a time or in one day? I have beenavoiding the gyn since February. Three times I have had to cancel my appt due todiscomfort that morning. The pap just adds to the pain, so I have to get lucky and feelgood on that day. Such a project! I think I may have missed something. What gene are youguys talking about? What is RSD? Who gives the test for it? Very interested in obtainingmore info! Thanks again- Laurel
CommentCOX-2 Inhibitors....Celebrex, I think Vioxx, for that matter advil might be Cox-2inhibitor, I am not sure of that. Cox-2 inhibitors are used like NSAIDS, for all I know itfalls under the NSAID category too, not sure. Celebrex, is the real breakthrough becuaseit works on Cox-2 but not Cox-1, so you don't have to worry about the stomach irritation,ulcers, etc. I definetly to not recommend pouring bleach or alcohol onto your vulva, or taking abath in it, but you can try a betadine douch or boric acid inserts if you want. It mightprovide some info. If these help you, you might reason tha there is some sore of infectionat the root of your problem (yeast, bacteria, etc.) and you won't have to feel comcernedabout overusing antibiotics, and the harm that can come from it. Personally, I don't thinkthat this will completely cure people, becuase I believe the infection goes up into thehigher part of the reproductive tract, so you might get the numbers down, but probably notenough. That is only my opinion. Also, you might want to remember that you are killing offthe lactobiccilli too, which I would not be overly concerned about, but you have torealize that anticeptics are not choosy like antibiotics they just crush everything.
CommentJust looked it up and Celebrex and Vioxx are NSAIDS just like ibuprofen.
CommentIndeed, but a plain Advil isn't going to help. Does anyone have any questions for mydoctor? I'll leave in 30 minutes to see him.
CommentIf anyone has questions about the gene, have your doctors look this study up: Jeremias J, Ledger WJ, Witkin SS. Interleukin 1 receptor antagonist gene polymorphismin women with vulvar vestibulitis. Am J Obstet Gynecol. 2000 Feb;182(2):283-5. Please, do it! If only to rule it out as a cause.
CommentInteresting...I just got done reading the last few posts since I last wrote in. I amcurrently taking Celebrex 200mg a day as needed for cronic headeachs (probably stressrelated to this crappy disease), but it never occured to me to take it for my vv. I doknow that I havent noticed any change in my vv symptoms since I started taking it, butthat is not to say it wont work for someone else. I think it would definatly be worthtrying. Again I want to thank everyone for the advice on the surgery, no I dont think you wherebeing negitive, Jennifer. I need to hear the bad as well as the good. Christina
CommentI started writing this over an hour ago (had to leave my desk), so it is responding tostuff that probably was mentioned much before this.... SUSAN...Actually, I would be interested in whether they feel there is a connection toRSD (reflex sympathetic disorder) sufferers and the gene they are studying. I rememberthat some research was being done with the substance-p scenerio, not sure how widely thattheory is held, or even if I have that screwed up in my mind. Some sort of "feedbackloop" in the nervous system? My sister used to work where they would do epidurals forRSD patients. Some of these patients would have horrible pain in one leg for instance.That leg would have a temperature up to twp degrees higher than their other leg. Theywould put in the spinal, and then administer cortizone, and maybe other drugs into thespine. The temperature would go dow within in minutes, and the pain was significantlyrelieved. Incredible right. Most doctors do not even know about this condition. Thedoctors who treat it are anasthesiologists and neurologists, who uaually specialize inpain. I can tell you this...the nurses she worked with had sworn they would never havesurgery unless necessary. The nurses she worked with in the burn unit swore they wouldnever take sulfa drugs (because people commonly are allergic, and they saw a lot of casesof TENS). Nurses who work in hospitals see all sorts of stuff, that other parts of themedicl field know nothing about.
CommentReading some Jennifer's posts are a real education. I pick up alot of info on healththru reading and educational T.V.. Jennifer are you in the health field or do you do yourown research? My wife got the Boric acid prescription from two different Gyns. She wouldinsert one in the morning and one in the evening, and use a panti liner. She said therewas a lot of leakage from them so the one at bedtime probably did more. One last thing Iwas given a prescription for Celebrex when it first came out, just before I took it theDr.'s office called and told me not to. I have a bad stomach and there have been reportsof abdominal hemmorage associated with it.
CommentI called Whitehall-Robins, maker of Advil, and ibuprofen is not a cox-2 inhibitor, butit is an NSAID non-steroidal anti-inflammatory
CommentThe insert for Celebrex is at this site www.celebrex.com/prescribing/index.htm if yougo 1/3 down the page, there is a table showing how Celebrex is much less likely thancompeters to cause STOMACH ULCERS, but there is a warning that it can cause, "Seriousgastrointestinal toxicity such as bleeding, ulceration, and perforation of the stomach,small intestine or large intestine, can occur at any time, with or without warningsymptoms, in patients treated with nonsteroidal anti-inflammatory drugs (NSAIDs)."So, if you have serious digestive problems, you should stay away. Frank, I assume your doc thought this was a "safe" NSAID, and then luckilytalked to someone, or looked it up. The pharm reps, really hype up that this drug does notirritate the stomach. Frank, can I ask what your diagnosis for your stomach is? Is it your stomach, or youdigestive tract in general? Do you have crohns?
CommentShoot! Forgot to write something...you guys must be so sick of me. I have a degree in Marketing, and did not take any science in college, that is why Itry to write when something is my opinion, the opinion of a certain doctor, or the anopinion that is accepted by medicine in general. I don't want to mislead. My mother hasworked for the FDA for a very long time, and I was raised with her opening the PDR, andchecking out drugs. By the way, she is not a scientist either, but she gets the sciencethrough osmossis. She currently works in vaccines, if you ever have a question. She wouldtalk about the different stages of testing, and what companies she thought were ethical,and which seemed money hungry, etc. She loves the people at Merck. Moreover, my fatherjust retired from working under the surgeon general for 20 years. As you know the SurgeonGeneral cares for the health of the nation (the U.S.) and I have seen what politics can doto inhibit the Surgeon General's ability to protect us. This is why I had once started togo down the trail of the right wing interferring with health care. I have an example thatis really sad, that I will not go into, unless someone specifically asks. Anyway, I thinkthe medical language is not very intimidating to me, because I have grown up around it soto speak. I have a little to share with you about prescription drugs....When a new drug iscreated it gets a patent. That patent is there, so the pharm company can get back themoney it spent during Research and Development, and of course turn a profit. Typically, itis an innovation, so to speak, but it is not mysterious...like prescription drugs arebetter than Over The Counter (OTC) drugs, it's more about money. I think the patents are14 years, but I am not positive. During that time no one can sell that drug under adifferent name. Sometimes they get a patent extended, because the drug company will getthe drug approved for a new use. Now, it could be that the doctor's have been prescribingfor that use for years, but it has not officially been approved for that use. The nextstep when the patent is just going to run out, the drug comapny tries to get it approvedfor OTC sales. If they go OTC, there is a new market of consumers that can just go by itin the drug store, so even if another company comes out with it, hopefully the consumerwill stick with the BRAND they are accustome too. If it was still a prescription, thepharmacy would change you over to generic, get it? So, some drugs are prescription,because, they are very dangerous when not prescribed correctly, and have many warnings,and contraindications, and some are prescription simply because they are under patent. Iam sure you can think of many drugs that have gone from prescription topatent...Ibuprofen, monostat, dimetapp, etc. I want to say that it does not bother me at all that the pharm companies make money fortheir research. There is a big backlash right now against the pharm companies. I wouldhope that they are not to GREEDY, but I think they should be aloud to turn a profit. Thetruth is that a huge percentage of new pharm research comes from the U.S. because it isnot a socialized system. There are exceptions to this, but I don't think there are many.
CommentAnd this is exactly why I didn't want to list the name of the drug (which is NOTCelebrex, by the way). It causes too much discussion by folks who are not medicalprofessionals and may scare someway away from the drug who might benefit from it. I do notwant to sound too strong, but we have to be extremely careful with our opinions because wemay end up preventing someone from getting better. First of all, almost ANY drug label has a list of possible side effects. Some are moreserious than others. You neighbor might get the worst side effect listed on the label,while you may not have any side effects at all. Secondly, the Cox 2 that I am referring to is not taken long-term -- just long enoughto "turn off" the vulvodynia pain (AND THIS WILL HAPPEN ONLY IF YOU HAVE THEGENE -- IF YOU DON'T THEN IT WON'T WORK). Patients who find relief from this drug can gooff of it. Hopefully they won't reinjure the area and have to start on the meds again. Again, I am careful to point out that this may not be "your thing." But itmay work for others. Vulvodynia has many causes and getting tested for the gene will ruleout one possibility, just as many of you have had cultures, etc. which helped determinedthat it wasn't a standard STD causing the discomfort. It is disheartening to read "don't use this & that because it didn't work forme." It is more appropriate to say "I hope it works for you, but in my case Itried it and it didn't help." With so many different causes, it is difficult to figure out who will benefit fromwhat. Good luck to all of you. Again, sorry if my words sound strong. I just want the numberof sufferers to diminish!
CommentPS: My doctor just told me today that Vulvodynia research by doctors and pharmaceuticalcompanies is slow-going for one reason and one reason alone -- there aren't enough womensuffering from this. I guess 150,000 plus doesn't amount to much in the grand scheme ofthings. It's all about the almighty buck, ladies (and gentleman). Thankfully, he is movingahead despite the poor attitude around him. BTW, his latest research uncovered a subgroup of vulvodynia sufferers who do notproduce natural interferon. That is why some patients benefit from the shots.
CommentOne other thing and then I'll shut up: I never had increased pain with sexual intercourse. It's just that my pain wasconstant, therefore I couldn't imagine sex -- my sex drive was zero. Upon trying, Ilearned that actual penetration did not make it hurt any worse and I was able to relax abit more and not tense up at the thought of it.
CommentThis is my first entry. I am 24 years old, living in the Washington, DC metro area, andhave been diagnosed with Vulvar Vestibulitis and have been suffering with this for manyyears. I have been married for 6 years. It has progressivly gotten worse, from not usingtampons and discomfort during intercourse to no intercourse due to extreme pain and fear(for about 2 years). It's effect on my marriage is both physical and mental. I have a Verysupportive husband, but due to frustration we have gotten to the point where there is nointimacy. I have tried many different things over the past five years ( creams, aveenobaths, pills, etc.etc.) and none have helped. I have had a consultation with Dr. Marinoff(DC) about surgery- Vestibulectomy with Vaginal Advancement. But, it is extrememlyexpensive and I am scared that it won't work. If anyone has any suggestions and/or has hadthis surgery, please let me know. Elizabeth had mentioned in prior entries about havingthis surgery in 1997 with Dr. Marinoff--- Are you happy with the results? Also, shementioned having problems later with Barth. cysts and having surgery for that, and seeingDr. Abbas. Does Dr. Abbas do this surgery? I have never heard of the Barth. cyst problems.I would love to talk with Elizabeth about her experience and any one else. This problemeffects so many areas of our lives and I just want my life back! I pray that one day wecan find a cause and cure for this thing, so that no one else has to suffer.
CommentOK, I lied. Back again. Here is info on "the gene." . The chronic inflammation associated with VVS is induced by the production by whiteblood cells of the chemical Interleukin-1. The activity of Interleukin-1 is inhibited byanother chemical produced by the same cells known as the Interleukin-1 ReceptorAntagonist. The relative production of both of these chemicals keeps the inflammatoryresponse in balance. The gene coding for Interleukin-1 Receptor Antagonist is polymorphic, i.e., there aresmall differences between individuals in the exact genetic sequence of this gene. A rareform of this gene, called the 2,2 allele, is present in less than 10% of the population,and is associated with more severe and more chronic inflammation. This is due to animbalance between Interleukin-1 and Interleukin-1 Receptor Antagonist production. In their latest study, Drs. now report that more than 50% of women with vulvarvestibulitis have the 2,2 allele of the Interleukin-1 Receptor Antagonist gene. Thissuggests that their symptoms are due to an immune imbalance in the regulation ofinflammation. It provides, for the first time, a physical explanation for their problem,and suggests further avenues of research to end their suffering. ¿ 2000 NewYork-Presbyterian Hospital Weill Medical College of Cornell University
CommentSusan, first I am glad you pointed out that the drug for the people who have the genewould only need to be taken for a short time. Second, someone somewhere asked about Cox-2inhibitors, and Celebrex is a COX-2 inhibitor. If there is a special drug you are usingwhy don't you share the name. I know vulvodynia patients who have tried Celebrex, ondoctor's advice (obviously, on doc's advice, you need a script for it) so it is not such aforeign idea. Moreover they may be using a certain drug for the study, but there might beothers that perform the same function. The thing is many times there is monies given by aparticular drug company for studies, because then that pharm company, can get it approvedfor that use. I don't know if that is what is happening in your study, but it is possible.For instance Sporonox is approved for toe nail fungus, not for Vaginal yeastinfections/fungus, but it is used that way. And, I think it is fine if people say certainthings did not work for them, because I think there is an understanding by the women herethat different things work for different people, and that we probably all do not have thesame thing wrong with us, but in general can empathize with the suffering of living withvulva pain. And, what scared people away? I never said that you should be afraid to take Celebrex.That warning is from the insert, and was intended to explain why Frank's doctor may havechanged his mind. That warning is for all NSAIDS. It is not a secret, and it is factualinformation. Ibuprofen has the same warnings about bleeding, stomach ulcers etc. You areright that the chance you will suffer from a side effect is low, and the average personshould not be concerned, but Frank is not average! AND, I think it is wise to read aboutthe drugs you are ingesting, the more info the better. People can be extremely ignorant(and I do not mean this pointed at any one person) about medication and it drives mecrazy! I was at my sister-in-laws house a few months ago, and her 8 year old son had the flu.She started to tell me how happy she was to find chewable aspirin in flavors he likes.That it was hard for her to find it previously. I looked at her like she had six heads.You do know the problem there, don't you? I told her that children are not supposed totake aspirin with viral infections, because there is a link to it causing Reye's syndrome.She had never heard of it. I told her there must be a warning on the label, and she saidno. I was very upset that the FDA possibly had not insisted this be on the label, so Ipicked up the bottle, and looked it over, and it said it right there. Read about yourdrugs!!! Another one....Dimetapp, and other drugs containing PPA have been under fire forcausing strokes. Well, years ago when that drug went OTC many doctors were worried,especially since the high dose 12 hour pill was only one pill every 12 hours. They arguedthat a double dose could cause a stroke, because if your blood pressure was sensitive tothe drug, it would sky rocket to scary amounts. See, they knew that consumers are accustomto taking two pills when they take drugs not prescribed by a doctor. Two aspirin, twoTylenol, etc, etc. And, they assumed people would not read the package and just pop twoout of "habit". Then there are people like my mother-in-law, who was concernedthat her husbands fever was very high, and gave him 5 advil. FIVE! She thought since theyare not prescription, no harm could come. Or, what about the fact that people thinkTylenol can be taken, and it never has side affects. The truth is you should never take itwith alcohol, and if you drink every day, I would say, stay away from it altogether. Itcan cause serious liver damage. Now, I think the average person has nothing to worry aboutwith tylenol, but it is good info to know. I know people who used to pop them to"avoid a hangover the next day" not a good idea. I beg to differ with you Susan the more info the better. I agree partial info can bedamaging, but if you hear a little info that scares you, talk to others to find out whatthe info really means, or have the original person clarify. Also, if people hear about a drug, they would have to go to discuss it with theirdoctor anyway, because they would need a script, and if they had understood what the drugcould do incorrectly, the doctor would have the chance to straighten them out. That is whythe system is set up how it is. Susan, I still do not understand why you would not want to give out the name of thedrug. I mean from TV we know that Valtrex is for Herpes, Celebrex is for arthritis,Tylenol is for pain. The FDA said a few years ago that prescription drugs can now bemarketed directly to the consumer, yet you don't feel confortable, I just don't get it. I apologyze that this sound argumentative, but Susan I did take many of the things yousaid personally, and I felt the need to at least answer the statements you made.
CommentSusan, I wanted to say one more thing, if you remember a couple of weeks back, I wasthe one who provided everyone with the website to this study. I agree that pursuing thishypothesis about the Gene is wise, and I am glad you have shared the information withothers. I don't want it to seem like I am negating your information.
CommentOkay, you and Susan have piqued my interest. I know that Susan provided the study, butcould you again give the web address? I am definitely interested in this study as I feelit is my whole immune system that is out of whack due to this thyroid. Even though I saythat I am suffering from vulvodynia, which I do have, it is the vestibulitis that is mymain problem. When I have pain the skin in the vulva hurts to the touch (but is notclearly visible). But my main problem is in the Bart's gland on the left side or somewherein that area. I literally swell up so badly that sometimes the urine is difficult to getout. Also, the left side of the rectum too. All up in the inside there is swollen as well.Would this medication possibly help this as I have inflammation? Seems like most people onhere have the soreness right in the vulva (vulvodynia). Does anyone else have this besidesme? Also, Susan we appreciate your input but I agree with Jennifer why you are unable tosay which medication may help us. We know what we are up against and do not think it is amiracle drug, but perhaps if it could help just one person, that would be a milestone. Anyinfo that can be provided is immensely appreciated. Talk soon and thanks-laurel
CommentHere are the websites Lauren. www.nycornell.org/news/press/vulvar.html www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10694325&dopt=Abstract
CommentTo Susan and Jennifer: You both made some very relevant points regarding medications. Imyself suffered from a ruptured appendix, peritonitis, gallstones and intestinal adhesionsas a child. I also had symptoms of ulcer. I am one of those at risk people and I mentionedthe down side as a precaution to those desperate to try anything. Let's face it theseillnesses drive women to extreme for relief. The same day I received the prescription forCelebrex there were news reports of peolpe hemmoraging to death. I don't know if my Dr.saw the news or got a call and I don't care. Since many of the ladies here also sufferwith I.B.S. they should be made aware of all information and make their decisionaccordingly. I also have to watch asprin and excess vitamin C these simple things cancause the stomach to bleed in someone at risk. Did not mean any of this to scare womenaway from treatment but rather enlighten. Too often we all are prescribed and kept in thedark as too the short and long term problems associated with meds. I have been sufferingwith herniated cervical discs and rather than take meds that can hurt my liver and kidneysI suffer with the pain , it is not intolerable unlike what some of you experience.
CommentOk, Ok, Ok --you mentioned it before. It's Vioxx. I have a prescription for it"just in case," but I have not touched it. It's supposedly better than Celebrexin the side effect department. I should also point out that the doc and some otherpharmaceutical types are working on some new meds more specifically for people with thisgene, but he has not felt like it's OK to treat folks with the new med just yet. He has torun more tests. I appreciate that he is cautious. The reason why I don't like to listdrugs is because you KNOW someone will run to their doctor to get it, and some dumb ob-gyn(unfortunately there are many) will prescribe it not knowing who it may benefit. I don'twant to be responsible for someone bleeding internally or hearing "it doesn'twork" if they don't have the gene. If someone has the gene I'd say go for it and letme know how it turns out. The interferon is what calmed me down initially, so I haven'ttried the Cox 2. I have just been preached to about it. As far as you are concernedJennifer, anyone who does their research is a positive contributor to this site. Of courseI consider you to be one of those people. My only point is that we should be very careful(myself included), because there are (from time to time -- not lately) posters who seem tobe very naive and take what we say here as gospel, in part out of desperation. Iunderstand that mentality because I was once there. I don't want those people to get hurttrying something that isn't right for them or to turn away from a treatment that may helpthem. I know you don't either.
CommentAfter reading all of thease posts on celebrex, I think I am going to look up someinformation on it on the web. I was never told that it could cause hemoraging and it isnot on my bottle (they may simply have forgotton to put the sticker on there). I have IBSand gastral reflux disease, so I think I might fall under the group of people whoshould'nt take it. I think I will ask my doctor about it. Christina
CommentWell I am glad I looked that information up, my prescription drug guide isnt new enoughto have information on celebrex yet. I have asthma, IBS, and gastrol reflux, and I am alsoalergic to sulfa. All of thease are things that are listed under the dont take if. Mydoctor prescribed this to me (for headeachs) with my list of alergies, medical conditions,and medications I am currently on right in front of her. I plan on calling and asking ifthease things will be a problem. hear are the links to one of the sites I looked up if you are interested. Christina http://www.celebrex.com/prescribing/#WARNINGS
CommentI really appreciate the info Jennifer and to you as well Susan, although I wouldn'tknow where to begin. I will start by looking up the websites you provided. What is Vioxxprimarily used for treating? Does anyone know of those who have benefitted with regards tothe vestibulitis or is this a testing stage? Thanks as always.
CommentHi Laurel. I just want to say that you always always always have good information forall of us. I want to know your complete story; How did you get this condition and how longhave you been suffering and how do you keep it under control? I know that you post justabout every day and I'm sure that you've told your stories plenty times before. But Ihaven't actually read all the post so I was just wondering if you can sum it up for me andtell me your story. Thank you. Stephanie, what part of Mississippi are you from? I have noticed that whenever I don't eat anything, I won't hurt nor feel anydiscomfort. If I go a day without eating, I'll be a day painfree. And whenever I do eat,depending on what it is, sometimes I hurt, sometimes I don't and sometimes I'll just feeldiscomfort. Why am I like this? Anyone know? I have been feeling so good these past fewdays and that's because I've been starving myself. I don't want to do that! I know that'sso unhealthy. But it's like I'm damned if I do eat and damned if I don't! I swear I hatethis illness! Everyday at work I have to hear the women tell me how lucky and blessed I amthat I'm so thin; But I try to tell them that I have a nervous discorder and I can't eatjust anything I want. I tell them that I have to watch what I eat cause it may cause pain.I swear, no matter how much I try to explain the oxolates stuff to them, they'll never getit! I know I can't expect them to understand cause I don't understand most of it myself.Anyways, I'll talk to you all later. Goodnight
CommentLaurel, I also want to know have you ever had the surgery? I asked because you saidthat you've gotton at least 60% better. I know that I've gotton better since my surgerythat's why I asked. The only thing I have to worry about it being sure to completely healproperty within the next few months and I have to worry about eating so I don't die.
CommentFran are you still around? Just wondering how that new cream went. Or is it too soon totell?
CommentNo surprise that the reason little research is done on vulvodynia is because therearen't many sufferers. Yet what is this figure of 15% I keep seeing. Originally I read itwas 15% of reasons for referrals to gynos and recently I read it was 15% of women sufferto some extent at some time. In what ever context that is a pretty high figure and itobviously affects women in a number of countries. I think a lot of it has to do with thefact that its one of those unspoken conditions. Good girls don't talk about thier privatebits!!! When I bring the subject up my own mother changes the subject every single time-oh except for the day she told me to IGNORE IT it will go away!!!!!! Keep lobbying girls.The only way to change things is if we have a voice and we bitch and we moan until morepeople start researching this miserable disease. Sorry I needed to vent.
CommentYour story sounds much the same as mine with the exception that I have never had anykind of surgery. I wanted that to be my last resort, as even one horror story is enough tokeep me from having it, with my luck! Do you belong to the VP Foundation? I wish theirseminar would have been closer this year. They used to have a couple a year but funds aresomewhat short. It was nice to meet with people who were just like pourselves. And eachstory has it's own uniqueness. But many go back to the antibiotics theory (from some kindof yeast or bacterial infection). I remember Dr Solomons saying that antibioticsadministered intraveneously were alright rather than orally. Then I thought, how manydoctors are going to do that! Look at me like I have 2 heads. Half do not even know aboutthe vulvodynia! I have always had this in some way, shape, or form. I grew up with allkinds of urinary infections. So did my sister. Her vulva was cauterized a few years backand is fine, but I have the vestibulitis so I think that would defeat the purpose.Definitely hereditary. But I let this bacterial infection go for months in late 1991. WhenI got the courage to get treated it was either too late or the flagyll did me in, or both.I have never been the same. My mom found an article in Woman's Day or the Ladies' HomeJournal and swore it was me. After all, my GYN had no clue. I had a needless colposcope bythat point which ruled out cervical cancer. It was the first time that I found a light atthe end of the tunnel and was relieved that I was not out there alone. I joined theFoundation around 1994 and that has been my lifeline. All the help from Dr Solomons andhis wife Ruth have gotten me to this point. I am between 60-70% better compared to how Iwas back then. I was so bad that suicide popped into my head on more than one occasion. Idon't think I would have done it, but even to think that way is so unbelievable.Especially being raised in such a stable and very comfortable family, but extreme andconstant pain changes the whole mindset. The most important thing has been the low oxalatediet. The ox-absorb helps too. I may go back on the HTO. I found it did not help nor hurt.Now I am on Synthroid for the underactive thyroid. I am hoping that it will help the painin time, as that can be a symptom. I find that if I do not eat, I have no pain either.What others can have, I cannot. I am noticing that vanilla even bothers me. I couldprobably have it once a week in small quantity, but it is so hard to live by eatingschedule! I have been flaring up these past few days like I do before my menses, but Ihave not gotten it since Feb 2000 (thyroid). I am swollen all up inside, but not as bad asit has been in the past, so I guess that's good. I am praying that it will come, so I canfind some relief. Yesterday, I ate melon all day long. No ill results. You may want to eat(and organic if at all possible) mango, honeydew, watermelon. I find that too much meatwill bring symptoms on. I can eat eggs, and peeled cucumber no problem. Try at leastthose. Do not starve yourself! I know it is the fear that keeps you from doing it. I amthe same way. have cheeses in small amounts too. same with salt. I hated to explain toeveryone why I am allergic to everything. Finally I just told them it causes chronicvaginal pain (even to people I didn't know). Trust me. it shuts them up! I don't care whoknows anymore. Just trying to get by, day by day. I hope that they find a treatment for ussoon. It's been 9 years of this. How long have you had it? From what? Please try to eatsomething today. I think you posted that you sent for the cookbook. I love it, but youhave to be careful of some ingredients. Some arn't as sensitive as you and I so they cantolerate more. Watch out for bread! I buy organic and still it does not agree. So, frenchtoast is out, but I don't have a problem with pancakes. If you have an organic storenearby, all the better. Only buy organic or unbleached flour if you cook with it. Anythingthat says whole grain or wheat isBAD. Let me know how things go. Thanks for the ear. Sorryfor the long drawn out story. See you online, Laurel
CommentLaurel: I believe that Vioxx is just being "tested" for vulvodynia purposes. There isnot enough substantial research yet to prove whether or not it is effective, althoughtheoretically it should. To the best of my knowledge, there were only 2 of us on thisboard who even knew about the gene, and one doctor (D's) who offered the medicine by sortof explaining in "normal people's speak" why it may benefit her. What does thattell you? The information just isn't out there. A good number of patients here sound like they possibly could have the gene, whileothers clearly do not. Take Lynn for instance. If she has pain free days when she doesn'teat, so part of it must be dietary. Ditto for Jennifer, because her pain subsided onantibiotics. That is part of the frustration with this disease. There are so many causes. For those of you trying new meds, ALWAYS read the insert or look the drug up on line.If you have any questions as to whether or not the drug is OK for you, check with BOTHyour doctor and pharmacist.
CommentLynn: If you are not already doing so, please try this while you are healing: *wash the area with plain water instead of using soaps. *rinse the area with waterafter urinating. *use a toilet paper such as "Northern Free" which is white anddoes not contain any irritating chemicals. *use chemical-free washing detergent on yourundies. They should sell "All's Free & Clear" in most major supermarkets.That is one brand that is good, although there are several others.
CommentJust to be clear Vioxx and Celebrex are competitors. Susan did mention that I hadoriginally wrote both names down when I first tried to answer the question, which drugsare Cox-2 inhibitors. They are approved for arthritis. The ads for both of these drugs areon TV. Anyway, I consider them to be a drug that most doctor's would simply prescribe ifyou thought it might help, barring any pre-existing ailment that would be a contradiction.They are most likely prescriptions due to a patent (see my patent information yesterday).It is a drug with very few side affects. Some drugs doctors will write like candy, becausethey feel there is no real danger in trying. For instance, if you go to your doc and say,I am inflammed, maybe I need a histamine suppressor I wanted to try Claritan, they wouldprobably give it to you. If you go to your doc and say, I heard Vioxx will help me, if Ihave a certain gene, the doctor would probably just prescribe it for you, because there isnot much down side, and there could be a huge up side to trying it. Vioxx is ananti-inflammatory, and the doctor would see it as reaonable. (I know Susan is hating meright now) but let's say you buy advil to try to counteract your pain, most would think,might as well try it. Well, Ibuprofen used to be prescription only too, same drug as whatyou buy in the drug store today, it is about the patent and money mostly. Now, Susan, I amvery interested to know if the Vioxx works for you, since you do have the gene. Not that Iam trying to push you into taking the drug, I would never, I like to take as few drugs aspossible. But, it will be interesting to see your response to it. I think if you have IBS, it would not be contraindicated to take the Cox-2 stuff (butdefinitely ask your doc). They are talking about bleeding ulcers in the warning. Thewarnings are the same as any NSAID basically, like I said ibuprofen is a NSAID, so if youtake Advil with no difficulty, there is not much reason to worry about Celebrex or Vioxx,although it is always possible to have an allergic reaction to a new drug, or even one youhave taken before. For instance, I am very allergic to Pepsid and Zantac both H-2blockers, but I can take Mylanta, both help calm the stomach acids. I will tell you ashort story....about 5 years ago I had a back injury and the doc gave me 800mg ibuprofensthrough workmans comp that were huge pills, that were not coated. I told my husband I wasgoing to go out and by a big bottle of advil, and take four at a time, because I have alot of trouble swallowing pills. Everyone has always tortured me about my inability toswallow pills, my father my whole life, my husband, etc. Well, I did what my husband said(like an idiot, because the pills had been given to me for free) and I broke the damn pillin half, and swallowed it with very little water, and went to bed for the night. Now, Iwant you to know that I had been taking 3 advil on the first day of my period, 3 times aday, for the last 10 years, Anyway, I woke up in the moning with a pain like a knife wasgoing through my chest!!! Wound up in the ER, had an endoscopy, and I still have thepictures of the ulcers in my esophugus. Seems the pill had broken apart in my esophagus(food pipe) and there was not enough liquid to wash it down, so it laid there all night,and eroded the tissue. The gastro guy who preformed the procedure new immediately that itlooked like it was from medication, even though I had not even mentioned I had done thatstupid thing with the pill the night before. I fully recovered in about two weeks, and Istill to this day take advil, I think it is a fantastic drug, and I have never had anotherproblem, I just make sure I eat with it, including at least a couple bites of food afterthe pill, and drinking water. I tell this story because, many times during the studies,when they are testing drugs, the people participating do not do as they are told whentaking the drug, like I had. During testing they have to report everything that happens tothe patient while on the drug. So, Susan is right don't panic when reading side effects,but good idea to talk to a doctor or pharmacist. By the way, your doctor will be going on what he has observed...meaning, he might say,"Oh, I have never had one patient have a problem with that drug," for instance.A PHARMACIST, is the person that will understand the pharmacology of the drug. This isvery important. When you have a question about a drug, it is a very good idea to talk to apharmacist, nine times out of ten, they will actually pull out the insert, before talkingoff the top of their heads, because this is their business. They are very careful to giveaccurate information about medication. There are pharmacists who specialize in makingrounds or consulting with doctors for elderly patients, to decide the best combination ofdrugs when there are many ailments. The pharmacist is basically doing the"prescribing" in this case. When I told doctor Toth that I wanted part of mytreatment to be augmentin in an IV, he called his pharmacist to find out which drug wasappropriate, because Augmentin is not made in IV form. One last think I have to say about taking medications. Since many of you do takeantibiotics for UTI's, etc. Some of them will say, take with a full glass (8 oz.) ofwater. I think Noroxin is one, and there are others. Anyway, many times this is listedbecause that particular drug crystilizes and can form crystals in the kidney, gosh I thinkit is the kidney? Which can be serious. If it is not the kidney it is still important, ifthey specifically tell you to drink plenty of water with the drug, drink it.
CommentThis is great advice by Susan... "If you are not already doing so, please try thiswhile you are healing: *wash the area with plain water instead of using soaps. *rinse the area with waterafter urinating. *use a toilet paper such as "Northern Free" which is white anddoes not contain any irritating chemicals. *use chemical-free washing detergent on yourundies. They should sell "All's Free & Clear" in most major supermarkets.That is one brand that is good, although there are several others." Susan, I had not seen your entry before I entered my last one. I am very happy you alsomentioned talking to both your doctor and PHARMACIST. Susan, I had a question...In the normal population, non-vulvodynia sufferers how manypeople have "the gene"? Did I miss that in the information.
CommentREAD THIS... I went back and read that long post I made, and I just want to say that Iam NOT reccommending that anyone take Vioxx, Celebrex, or claritan. I was trying to eplainhow doctors tend to think about certain medications. I don't know anyone that has curedthere vulvodynia with any of these drugs, and I do know people that have tried them, butthen as Susan stated you might need to have the gene for them to be appropriate.
CommentJennifer: I don't know the answer to your question about how many non-vulvodynia sufferers havethe gene. I'll try to find out. Should say in that report, but I have to leave for work ina few minutes. I seem to recall the doc asking if I had arthritis in my family, so maybeit's the same gene? It would make sense if they presribe the same meds. There are aboatload of anti-inflammatories, so why use Vioxx? I would guess that the numbers arehigh. Hell, I never would have found out I had it if I wouldn't have had that tamponproblem. Most women who have the gene are lucky enough not to know it because they don't"turn on" the pain in the area. The thing is, I won't use the Vioxx unless I flare up again. There's just no reason touse it if I don't have pain. In other words, I hope I don't ever get to try it! Have torun off.
CommentYes Jennifer, the doc said you have to have the gene for the Vioxx to work. It will nothelp people with isolated dermological conditions, bacterial or viral infections, etc.Really have to go now...
CommentHello Everybody, I have not posted in a couple of days, but for some reason I have nothad as much burning @ work as I have been. I am so excited! Lynn, I have been doingexactly what you said washing with the Vanisoap every other day and only with water theothers and using the Vanicream. Also Laurel, I have been following the low-oxalate dietcompletely and have cut out all the cokes and chocolate. It may just be a good week forme, or one of these "remedies" is working. I really want to be free of burningby the time I go on my trip, but I'm not going to get my hopes up too high. Lynn, I amorginally from a place called Kosciusko(Kos-z-s-ko yeah, it looks hard to pronounce, butit's easy). Now I live in Jackson. Lynn, please eat something, even if it's just a littlesomething. Something is better than nothing. I hope everyone has a good day.
CommentIf you are a lichen planus sufferer, ask your doctor about Imuran. It's a drug that'sused for rheumatoid arthritis and transplants. It's a new drug in the vulvar vestibulitisarea, but it has worked for me. Ask your doctor about it. It's not a long term drug. I ambasically fully recovered from being on it. Just wanted to let you know! It's definitely worth a shot! I even have healthy bacterianow!
CommentDr. Glazer: Are there any additions to the professional registry, or is the 1998 listthe most recent? Thanks.
CommentJust to give credit where credit is due...the first place I heard about the Cornellstudy was on this website back in the 12th or 13th guestbook. Grainan had posted thewebsite, and that is where I got the info. This is one of the reasons I come back to the site very so often, because I know thatas the groups of women change, some of the info that has been disussed before slidesthrough the cracks. Hi Grianan, if you are out there.....
CommentLiz was right on with her post. I'm sure the numbers are greater than those beingreported. I also think and have said before if these illnesses hit men there would be moreaction taken. We are blasted with sex on T.V. and advertising and yet when we haveproblems regarding it no one wants to talk. I would rather make love to my wife than doanything else in the world. I am being totally honest, not hanging with the guys orwatching sports. While some of you might admire my honesty most people would think "disgusting" is that all he cares about. I think about plenty of things but lovemakingis my ideal place. This illness has taken away a closeness and pleasure I can only beginto describe. I also think that if it is genetic that the cause might be environmentalcausing a defect that we are just now seeing. Have women suffered in silence for hundredsof years without documentation? My wife is mad at me for staying away from her but as Itold her if she has a tear I will not have sex. I would rather wait until she heals thancause more damage. I'll shut up , sorry I said so much.
CommentHello, As a sufferer of vulvodynia who is finally beginning to get better, I want toshare my knowledge about what has helped me most - physical therapy. The approach my PTtakes is two-fold. First, she begins by evaluating the muscles for dysfunction. Ifdysfunction is found, this is treated by variations on Kegel exercises, and biofeedback.(I didn't actually have any muscular dysfunction). The second part of physical therapy,and what has helped me most, is soft tissue work and trigger point massage. I had intensepain in my introitus and vagina with pressure or provocation. The soft tissue workgradually desensitizes the nerves. The amount of pressure I can apply to formerly horriblysore areas has increased immensely. Before I started physical therapy, I could barelytouch my introitus. Now, I can apply as much pressure as I want with no discomfort to allbut two small areas. I've been doing the physical therapy for just a little over threemonths. If anyone has internal pain, I strongly urge you to get evaluated by a physicaltherapist specializing in pelvic pain. If you have any questions, please feel free toe-mail me off-list. allison@orion.mc.duke.edu -Allison
CommentFrank, I know I have read that there is documentation of vulva pain that goes back atleast 100 years (does anyone else know the info on that? I too love being with my husband sexually, it is a profound connection, and not beingable to have sex in a loving relationship is a profound loss. I had people and doctors saythat sex isn't everything, and as you get older it matters less...I was 23 when I startedwith my vulvodynia...but you know what--it DOES MATTER. I don't mean to say that you haveto have sex all of the time to keep a relationship going, but there is something missingwhen one of the ways you are accustome to connecting with someone is taken away. AND, thepoint for me was not just that I could not have sexual relations with my husband all ofthe time, but that there was a loss of sex in general. Feeling sexy, being arroused,feeling attractive, all were important to how I thought of myself as a woman and it was"taken" from me. My depression definitely stemmed from this loss, I wasgrieving. Now, I would figure that even though you are not in pain Frank...it still affects youas a man. What I mean to say is...my assumption is that even though your wife wants tohave sex to be as "normal" as possible, it is obvious that it is not the fun,giggle, hot, intense, I have to have you inside of me Frank or I will explode, type sex.So, it is a loss for men too when it comes to ego, identity, etc.
CommentI was rereading a little bit and realized that we are falling into the trap that mostdo. The point is not the sex the fact that it is a sexual organ that is "sick"is not the point. Or, what I mean to say it is the point on a psychological level, but nota physiacal one. The problem is that we have a part of our body that is not functioningcorrectly or not healthy, and we want friends, family, doctors, and researchers to focuson that and not the sex. As someone said a while back our puritanical society cloudseverything. Talking about your vagina is taboo, because sex is taboo. This is the same crap people encounter with mental illness. Instead of looking at thebrain as being another organ of the body, and sometimes things can go awry, we have allsorts of terrible shame and misunderstanding with mental illness. It is an uphill battle. AND, doesn't it amaze you that there are no female doctors that have this condition?Or, at least it seems that way. And, what about somebody famous that could raiseawareness. I know these people exist, where are they hiding? 15% is a huge number, HUGE!
CommentTo Jennifer: Even though I get frustrated with the whole situation I believe the morewe discuss it the more desensitized people will be. I mean speaking of pain of thegenitals or sexual dysfunction used to be much more taboo, I can't imagine my father goingto my Mom's Gyn and talking about libido. Progress is being made with every woman who iswilling to speak up to her Dr. rather than suffer in silence. I am close to my wife on amore emotional level with every crisis we face. Sure I miss what we had and I realize itmay never be the same, still with all I have said I cherish spending time together. I seemy life as a journey with nothing remaining the same, I can either go with it and do mybest or fight what I cannot change. My wife and I have a history together and while thismakes for change I for one will not let it be our undoing. Have a great weekend everyone.
CommentGreat attitude Frank, I feel the same way. As I have said before, I hope I am with myhusband forever. I love him intensely. Everyone deals with difficulties in life. 100% agree that every woman that comes forward is another step towards it being out inthe open, and the public having to take notice, and not needing to feel like it is asecret. Look what breast cancer has accomplished....this is about as common as that. Hell,breast cancer is truly amazing. They have every woman terrified of getting breast cancerwhen way more die from heart disease.
CommentI cant remmeber who it was now, but someone talked about how 'good girls' don't talkabout problems like thease, and how when you talk about it people change the subject. Well I just have one thing to say about that. I have never been very good at being a good girl. Not to say that I am promiscuous, in fact I think I am actually in the minority in thatI am 25 years old and the only sexual partner that I have ever had is my husband. So guesswhat, there are no 'good girls'. I too have problems talking to friends and family about this. They are as supportive asthey can be, but I find that my mom will change the subject often when I bring this up.This is a problem, people should be able to talk about this with there familys. I have decided that I wont hide my problem from anyone, I'm sick of making up liesabout whats going on with me. I gave my parents and my brother some information I printedoff the computer about this disease, and I talk about it weather they like it or not. Whenthey seem interested I let them know how much it means to me to have them there for melistining. I have found that lately they have been a little less embarrassed about it andactually have questions. I'm sick of being ashamed of this and I wont be ashamed anymore. Christina
CommentHey all! I pulled out this book I bought about a year ago- Forgot how much great infoit contained. It is called "The Yeast Connection and the Woman," written byWilliam G. Crook, MD. I think that this will be a great help to those with chronic yeastproblems. There are chapters upon chapters of symptoms and treatments. Please get a copy.There is a chapter dedicated to vaginitis and a whole one for vulvodynia, as well as IC.Even one for my thyroid. There is no question all of these are related and our theoriesare correct. It talks about flagyll being the cause of yeast (candida albicans). Somegreat remedies too. And foods that bring on symptoms. Avoiding sugar is key. I reallysuggest you get a copy. I bought mine at Barnes and Noble. Well, I must go and read on...Laurel
CommentGood for you Christina!! Women have never had it easy and still do not, for all thestrides made by the " Women's Movement " there are still many more to be made. Iknow simple things like breast feeding a baby in public took a long time to becomeacceptable, how ridiculous. My wife has only had me as a sex partner and I have only beenwith two women my wife included. Nothing to either be ashamed of or brag about. Why is awoman who has had many partners a " Slut " and a man is "experienced".Double standards need to be taken down, unspeakable topics need to be spoken of. I alwayswant my daughters to feel free to speak about anything to me, and I mean anything. YourMom may never feel at ease with the subject but others will. This is the most personalsubject I can think of sure there are all sorts of phobias and taboos to be broken down.Brave women take those strides and make it a little easier for future generations. I knowI'm not talking about Vulvodynia specifically but this attitude lays the ground work forprogress. Out of the closet and into the light.
CommentSusan, Thanks for all your helpful info. I have been following all the entries for awhile. Iam interested in the "gene" you are talking about. I have seen various thingsabout it--haven't read the deatailed study yet, but will do so. How do you get tested forit?? Is it a blood test? If I asked my ObGyn would she have any idea how to test for it ornot? Any more info on how to find out about this or lacking natural interferon ( I think Iread something else about this you posted) would be appreciated. Thanks
CommentSusan, i have been a way for several days, but thank you for reading my entry andcommenting on it. Dr. Stewart has not yet told me whether she has received permission toadminister these new anti-inflammatory drugs (they are, by the way, given by a shot), buti will let all of you know when i know something more. i also want to read the study youmentioned, and i was also wondering how one gets tested for the gene. it does sound as ifsurgery would not be the best strategy with women who do have it, although i really knowso little about surgery. when it comes to talking in public about our condition, i know how hard it can be,especially in the beginning. when i left school i had to tell the head of my departmentand my thesis advisor (both of whom were males). however, the next time i went to see myadvisor before i left, he invited me to pull up my chair, and he started to search the webwith me to find out any info we could on vulvodynia. he also handed me names of his wife'sdoctors. i was so touched by his warmth and genorosity that i realized how many peoplewanted to help. since then, i have told anyone who asks about my condition. although scary, this hasforced me to become more confident. and surprisingly, a few times, people have told methat they also knew a woman suffering from vulvodynia, and have gotten the two of ustogether. more often, friends have gotten me in touch with doctors, and other health careproffesionals. therefore, i really suggest that we start speaking more loudly so that the nationrealizes exactly how many of us there are. in a sense, every person i tell, i am actuallyeducating about vv. we have a disease; it happened to us, and it is no way a reflectionabout our character or something that we willed; it is not a punishment, but rather veryvery bad luck.
CommenthALLELUJAH, to that last one. I have a question. In the intro to this site, Dr. Glazer states that Vulvodynia is painOR ITCHING of the vulva. Is the itching the case with anyone here? I am curious because Ihave suffered from severe and sometimes very painful itching for five years now and alwaysassumed yeast was the culprit. I have been treated many different ways with many differentdrugs and herbals and none has worked premanently. I just wonder if it's actuallysomething besides yeast I'm dealing with... Any ideas?
CommentLaurel, you've gone through so much with this mess! And you seem to have a good headand seem to be so strong through it all. You keep it up girl. Stephanie- I'm EXTREMELY HAPPY that you are doing much better these days. You keepfollowing my regimin and you'll be free of the external pain and irritation within 2-3months. Susan- I swear to you, ALL THAT YOU'VE MENTIONED is all that I do. I do all thateveryday and that is what helps keep all this under control. Thanks much. And I am eatingyou guys. I'll eat once a day but that's it.
CommentTO K: Yes some women have severe itching with Vulvodynia. Sometimes I have itching, butmine isn't a yeast infection.
CommentI get itching with my vestibulitis, and it is not a yeast infection(although I havemore than my share of those also but I can always tell when I have one...It feelsdifferent). When I itch and it is not a yeast infection. The itching is more tward theoutside and the clitoral area. Christina
CommentI don't mean to be nasty, but I have noticed that my vaginal discharge has an oderidentical to how my nasal discharge smells (like when I blow my nose). This is when Idon't even have a sinus infection. I know this is a little wierd, but honestly...I havebeen wondering about this for a while now. Has anyone else noticed this? Any ideas? Just acoincidence? I have chronic rhinitis (severe year round environmental allergies affectingthe sinusis).
CommentBecky: I am not sure if the gene test is done by checking blood or by taking a little swab(culture) of the area. For awhile there, my doctor was doing both every time I had anappointment. They have the information in the study, and I believe it was done by aculture (and it tells you what they preserved the culture in, etc). Ask your doctor tocheck it out using the info I gave above. Lynn: Glad to hear that you are doing all the right things to heal as far as keepingdermological irritants away. Now we need to make sure that nutritionally you're all set. Idon't want you to lose more weight if you are already thin nor do I want you to lack theproper nutrients required in the healing process. I will ask my friend (a nutritionist)for a list of foods she thinks you may be able to tolerate. This could take about a week.Additionally, ask your doctor if he/she thinks taking some supplements such as vitamin e(inflammatory process eats up much of our natural vitamin e and it is crucial for healthyskin ) and evening primrose (you can look it up on-line -- it has many benefits related tothis condition if you take it in small doses -- never overuse these supplements). Again,check with your doctor before trying anything I recommend. I am in showbiz, so I don'thave the necessary qualifications to act as a web-MD. :0) D: That's very interesting. I wonder if your doctor and my doctor are on the same page.I never inquired as to whether or not these new test medicines are administered via shot.I wish you the best of luck. Keep us informed!
CommentSomeone was talking about food Lynn can tolerate. Did I miss something. Are you talkingabout food allergies here? If you are there are a range of different food allergies andintolerances and you should actually start off with diagnostic test like RAST tests if youthink this is the case. Its then that you go on an elimination diet and challenge yourselfwith each of the food types you have eliminated. Thats how it works in AUs anyway (im adietitian). Its quite complicated and systematic otherwise you never work it out cause astheres so many components in food. To the person that has the odour like their nose. I was reading somewghere about a linkbetween a strep infection and vulvodynia in some people and apparently lots and lots ofpeople have strep in their nose (w/out symptoms sometimes). As for our little discussion about feminist issue and talking about your bits etc. I'mappalled in this day and age that man was put on the moon over 30 yrs ago and yet womenhave to suffer with this horrible thing still. And thinking from a physiological point ofview - surely its not that complicated. But then I don't have a medical b/ground just ahealth one.
CommentHi, I have just been diagnosed with V.V after 4 years of being told there was nothingwrong (and feeling somewhat like a hypochondriac). Like many others I have read about, mysymptoms started when I used antibiotics to treat a thrush infection. At first, I thoughtmy symptoms were due to an allergy to dairy products. I stopped eating them and found thepain disappeared for 6 months. However it returned and since my diagnosis I have readabout the Low oxalate diet, and other methods to treat V.V. From what I have read, peoplewho are affected by VV are usually of western lineage and linked to having high oxalatesin their body. It seems odd that other cultures, like the Japanese, who eat a highconcentration of Oxalates in their diet do not suffer from VV. I would like to know if anysuffers of VV have consumed diet/sugar-free products (aspartame) over a long period oftime (months – years), like diet coke etc. Has anyone else found a similar link? Iwould be extremely keen to receive any e-mail from people who have, as I live in NewZealand and do not know of any support groups that I can discuss my ideas with. Thanks inadvance for your reply. Hannah
CommentHi everyone.. I haven't posted in awhile, and I noticed that there is another Beckyposting, so I am adding my last initial so you won't get confused.I was diagnosed withvestibulits last year. I am currently undergoing antibiotic IV treatment with Dr. Toth inNYC. I am doing well so far and will keep you posted on my results. Both I and my husbandwent to Dr. Toth for testing. My husband's culture tested positive for Chlamydia and 2anerobic bacteria. Mine came back positve for Actinomyces israelii, an anerobic bacteria.Toth feels that this is what is causing my vestibulitis. The reason I didn't showChlamydia is that I was taking antibiotics with the dermatologist I went to before goingto Dr. Toth. My husband is taking oral antibiotics, (he wanted to try the oral first) buthe will have to be tested several times to make sure he is "clean". For the person who spoke about the vaginal/nasal odor... I also had a bad vaginal odorwith this that has improved since the treatment. I didn't have the odor nasally, but Ihave suffered with sinus headaches routinely over the past couple years. Also, I justwanted to say that Dr. Toth has been great in dealing with me. He is one of the kindestdoctors I have been to. As Jennifer and I have said before, this treatment may not workfor everyone....but if you believe that your vestibulits/vulvodynia is infectious, thenyou and your partner should be tested for anerobic bacteria,etc. This kind of bacteriawill not show up in a regular test at the ob/gyn. Toth has a special lab set up for this.One last thing...this whole infection I had really affected my period. I went from a 5-6day period to only 3 days. Toth said that will also improve after treatment. He isbasically a fertility specialist, but also deals with infectious disease.
CommentFor Hannah- The book The Yeast Connection and Woman may help you. Like me, my vv gotworse after being treated with antibiotics. In the book, it described how eliminating milkand other dairy products can alleviate symptoms of vaginits and vestibulitis. It can alsoprevent a discharge if you have it, along with mucous in the body. There are severaltreatments in there that I feel would be beneficial to you. Good luck-laurel
CommentSusan-- I will ask my doctor about testing for the gene when i speak with her next. iget a thrill of excitement when i think that perhaps in the near future some breakthroughwill happen. I had read that you were helped by the interferon injections. i readsomewhere that interferon is sometimes MORE helpful for women who do not have HPV since itcan act as an anti-inflammatory medicine. if the next few meds do not work for me, Stewartwants me to get interferon injections to help boost my immune system--although wediscussed the fact that its success rate is so low. had you heard this before? were youtested for HPV. I was but did not have it. Also, were you tested for the gene and do youhave it? are you pain-free now? I would love to hear your story. Your doctor does sound alot like Stewart. Could you give me his/her name? i apologize for all the questions but itappears that you have great insights into vv. when i went to see Stewart about a week ago, I had done some research (in part by goingthrough old guestbooks) and so I asked her about many different therapies. unfortunatelythe Nortriptyline has not been helping me very much although I have been on it for 4months. I asked her about trying a muscle relaxant because i noticed that i am alwaysclenching, especially during a flare-up. two women had written that they were cured onFlexeril. as stewart has been in a pain clinic for a few months now, she said for me totry a drug from that family called Baclofen, which relaxes muscles and aides nerve damage.I have been on it a week and see no improvement with the burning, however i am NO LONGERclenching. i have been doing biofeedbck to relax so muscles and this has helped with that.again, i see no diminishing of the pain, but i think its long term effect must bebeneficial. i do not know whether it interferes with any other drugs, but i do know thatit is frequently given in pain clinics. so far it has really not made me drowsy at all. iwill keep everyone informed.
CommentAs much as I am appalled by how women's health issues are dealt with, I just wanted totake the time to say that after a short while, nobody wants to hear someone complain aboutthe same thing again and again. Frank can chime in if he agrees. Doesn't matter if yourvulva, hurts, you back hurts, or your stomach hurts, most people (family, friends) gettired of listening. I have a girlfriend who just had her father pass away, the day of hisfuneral her almost 2 year old daughter got 2nd and 3rd degree burns, and she is moving toa new state, and she called me upset that everyone around her is telling her to get overit, when it is just three weeks past the incidents. What is wrong with people? I wanted to make a comment on the nasal smell, and the vaginal smell. I too hadsuffered from that, and since the antibiotics it has resolved, and my nose is not"drippy" anymore. One thing to be wary of...the smell in your mouth, and I wouldassume it can go up to the nasal passages is from a production of sulfer from bacteria orgarlic or onions. If you are a heavy garlic and onion eater go without it for several daysin a row, and see if it resolves, especially if you seem to have no other oral/nasalsymptoms. Remember spaghetti sauce, and other dishes have garlic, so be strict. It is justfor a few days. My first impulse is to say everyone has an infection, but the truth isthis info must be mentioned. To this day when I consume a garlicky dish, and then myhusband comes near me, he say, "oh, Jennifer, are you feeling o.k., you smell likebacteria." Whether the odor would show up in the vagina, I don't know. All I can sayis my vaginal odor was always pleasant to me until I was stricken with vulvodynia, Ireally started to stink, and taste bad. And, by the way, my husband tastes way better t menow that we have done the antibiotics.
CommentAs much as I am appalled by how women's health issues are dealt with, I just wanted totake the time to say that after a short while, nobody wants to hear someone complain aboutthe same thing again and again. Frank can chime in if he agrees. Doesn't matter if yourvulva, hurts, you back hurts, or your stomach hurts, most people (family, friends) gettired of listening. I have a girlfriend who just had her father pass away, the day of hisfuneral her almost 2 year old daughter got 2nd and 3rd degree burns, and she is moving toa new state, and she called me upset that everyone around her is telling her to get overit, when it is just three weeks past the incidents. What is wrong with people? I wanted to make a comment on the nasal smell, and the vaginal smell. I too hadsuffered from that, and since the antibiotics it has resolved, and my nose is not"drippy" anymore. One thing to be wary of...the smell in your mouth, and I wouldassume it can go up to the nasal passages is from a production of sulfer from bacteria orgarlic or onions. If you are a heavy garlic and onion eater go without it for several daysin a row, and see if it resolves, especially if you seem to have no other oral/nasalsymptoms. Remember spaghetti sauce, and other dishes have garlic, so be strict. It is justfor a few days. My first impulse is to say everyone has an infection, but the truth isthis info must be mentioned. To this day when I consume a garlicky dish, and then myhusband comes near me, he say, "oh, Jennifer, are you feeling o.k., you smell likebacteria." Whether the odor would show up in the vagina, I don't know. All I can sayis my vaginal odor was always pleasant to me until I was stricken with vulvodynia, Ireally started to stink, and taste bad. And, by the way, my husband tastes way better t menow that we have done the antibiotics, I had not even expected that.
CommentD:Yes, I was tested for the gene and I have it. Prior to finding out that I had thegene, I was treated with interferon and about 2 months later I was fine. And yes, a hypersensitive test showed HPV (while the gazillion tests I took before the hyper sensitive oneshowed nothing). For me, the shots were a Godsend. Comparitively speaking, they were notpainful compared to the pain I was already experiencing. I never uttered a sound duringthe 12 that were administered. I handled it really well -- the only thing I experiencedwas a mild hot and cold feeling, sort of like a mellower version of you might feel withthe flu. It was no biggie though. The dosage they give you is VERY small. I would walkfrom getting my shots to work and then carry on as usual. My doctor's name is WilliamLedger, chief of ob-gyn at NY Hospital. Perhaps your doctor could place a call and consultwith him before she decides to do anything further.
CommentAre we going to start a new guestbook? This one is 500 pages long!!
CommentTo Jennifer: I can't comment on vulvular pain but I agree chronic pain is a drag andafter awhile no one wants to hear about it. I think most folks are too self absorbed tostop and just listen. Why say "high how are you" if you don't really want ananswer? I would walk around sometimes doubled over with stomach pain and most peoplethought my back hurt. How terrible it must be to have pain of the Vulva,at least I couldhold my tummy or massage my back. You mentioned smell and taste, I have noticed my wifehas almost no scent or taste like before. Don't meant to be graphic but there has been achange. Maybe she is going through menopause and the hormones are lessening.
CommentQuestion: How do they test for the gene? Once you know you have it (or not), then what?Is the gene related to vulvodynia with inflammation? I have a very difficult time with any sort of cream---just makes things feel worse. I saw a Dr some years back and he used boric acid suppositories. For theadverturous...you can buy a bottle of boric acid powder and some gelatin capsules over thecounter. Per my dr's directions, I made my own. The dr. wasn't concerned with the exactamount of the boric acid I got in the gelatin capsules. This treatment was AFTER my 4surgeries w/Dr. Reid in Detroit and was for yeast. After the boric acid treatments, I didget better for several years. I now have had vulvodynia again for almost 2 years. AlthoughI have to say that my symptoms now are different than my symptoms then. For some reason,my doctor doesn't care about that. The boric acid capsules did burn my skin quite a bit,especially during the 1st few weeks of treatment (it seems like treatment lasted at least6 weeks). For that reason, I don't want to try them again. My symptoms now consist ofburning and I don't want MORE burning. My dr. diagnosed me with a bacterial infection last week and then a yeast infectionafter that. Round and round we go!! Thought maybe some of you would relate to this viciouscycle!! -Cheryl
CommentCheryl: we talked about the gene testing above. Yes, the gene is responsible forinflammation. I'm sad to hear that you are having a relapse. Lynn: I struck out with my nutritionist friend who I spoke to about your case. Shebasically felt like we would be treating your symptoms but not the cause, and that foodelimination is much too complicated to get into in a short conversation. She didn't feelcomfortable able it. Anyway, she suggested finding something (such as crisco -- the solidwhite kind) to put on the area so the urine does not sting the skin and in turn irritateit. Not sure if that's OK to do following a surgery. Or perhaps the vanicream you areusing would have the same effect as crisco. Anyway, hope you are feeling better.
CommentThis is the second or third time I have read of women using Crisco as a skin barrier orlubricant for the Vulva. We should not be eating Crisco much less putting it on ourprivate parts. There are special creams, antiseptic, sterile specific for that purpose.Please consider the right product.
CommentWell I went to the MSU library tonite, found the article on the gene thing and copiedit just as the library closed. Thank you to whoever provided the magazine information so Icould look it up. Someone asked how many women in the general population have this gene. The articlestates: "Cells from the lower genital tract of 68 women w/VV, 343 women w/no historyof vluvodynia, and 40 women w/HPV cervical infection were tested..." It furtherstates: "Allele 2 of the gene encoding the interleukin 1 receptor antagonist waspresent in homozygous form in 52.9% of women w/VV. Only 8.5% of the control women &2.5% of women with HPV were homozygous for this allele...." In one part of thearticle it states that the production of IL-1B has been linked to the severity of severalchronic inflammatory diseases such as inflammatory bowel disease, rheumatoid arthritis& multiple sclerosis. "The finding of a strong association between IL-1RA*2 andVV indicates that there is a genetic component to this syndrome....These findings areconsistent with other studies relating an increased frequency of IL-1RA*2 w/other chronicinflammatory conditions such as ulcerative colitis, alopecia areata, psoriasis &lichen sclerosis." I found the article interesting, but got pretty lost with all the medical terminology.In my case, I believe I may have this gene. I have said all along that my pain is due tothe inflammation. The article also talked about Dr. Glazer's biofeedback treatment, which was interestingalso. I noticed in reading an earlier post that someone made the comment that women in asiancountries do not have VV. Is this true?? I know that women in asian countries have a lowerincidence of breast cancer, heart disease, etc, but had not heard the statistic about VV.I am very interested in the answer to this question. -Cheryl
CommentThis is the first time I have posted anything although I have visited the site often. Iam 28 and have had vulva pain since about age 12. Needless to say, my life has beengreatly effected by this. As I have aged the pain has gotten worse to the point that sexis impossible. This has been particulary hard for me to accept since I am single. I don'tbother to date for obvious reasons. I honestly don't know what is worse, to always bealone, or to risk finding someone only to lose them because consumation of a relationshipis impossible. What I find even more difficult to accept is that where my pain used tohave to be triggered by something, it now is a daily reality without a clear trigger. Ihope someone finially finds a answer for this so that I can live a full, pain free( or atleast greatly reduced) existance. Thank you to all of you who have shared your story, ithas helped me feel a little less alone.
CommentThis is the first time I have posted anything although I have visited the site often. Iam 28 and have had vulva pain since about age 12. Needless to say, my life has beengreatly effected by this. As I have aged the pain has gotten worse to the point that sexis impossible. This has been particulary hard for me to accept since I am single. I don'tbother to date for obvious reasons. I honestly don't know what is worse, to always bealone, or to risk finding someone only to lose them because consumation of a relationshipis impossible. What I find even more difficult to accept is that where my pain used tohave to be triggered by something, it now is a daily reality without a clear trigger. Ihope someone finially finds a answer for this so that I can live a full, pain free( or atleast greatly reduced) existance. Thank you to all of you who have shared your story, ithas helped me feel a little less alone.
CommentI have had vulvodynia for 13 years and had noticed that the pain was getting worse. Ithought it was my age, because I am 42 now. However, I did biofeedback with a physicaltherapist for about 12 visits (she also did something called myofascial release therapy onme). I am much improved. She said that the pelvic muscles were very weak due to non-use -I haven't had sex in years. I also have tension spots in the muscles, which she taught mehow to relax them by bearing down. The myofascial release is supposed to release scartissue, which she thought based on my body movements that I did have scar tissue somewheredown there. Give the therapy a try, it can't hurt anything and I was very skeptical about itmyself. I am also on 40 mg of prozac which is supposed to help with my depression as well asraise my pain threshold. I am not sure what is making me feel better at this point, sinceI am using both therapies. I am doing the kegels on my own.
CommentJust a thought-- could we please briefly all state what are daily symptoms are? readingover these comments is helpful, as is hearing about various treatments. however, it wouldbe even more helpful to state what treatment worked for what daily symptoms. i know someof us have done that already. thanks!
CommentTo the anonymous poster who wrote about crisco not being OK to use as a skin barrier: Itried it myself to rule out allergies. It had no ill effects whatsoever. I only tried itafter 2 doctors recommended it. It is also recommended on a couple of the vulvodyniasites.
Commenttwo doctors recommended crisco to me as well although i have never used it. Dr. Stewarttold me to use olive oil as a lubricant for every need--she said the greeks used it withno problems. not the cleanest thing to clean up! i get worried when i use modern productsnot made with all natural ingredients because of the chemicals involved--but i am justoverly sensitive. have people heard of a better lubricant? Thanks!
CommentI have been trying to find Ox-Absorb on the website that someone wrote on these boards,but I cannot find it. Perhaps it goes by another name. Please let us know what we shouldbe looking up so that I can order. I have heard good things about it from lots of people,so it's defenitely worth a try.
CommentFor the person who asked about symptoms: My vulvodynia symptoms have changed a lot(mostly for the worse) since I first got it about 15 years ago. When I first got VV it was only sore during sex. Over a few years it progressed toinclude a throbbing pain over the whole vulva area. After several surgeries (includingremoval of the Barth. glands) and treatment for chronic yeast, most of that went away. Forseveral years afterward I was just 'more sensitive'. Sex was sometimes painful, sometimesnot. Tight jeans or other close fitting clothes would rub and be uncomfortable. When I started my bout 2 years ago things changed. I started having general skinirritation 'down there'---kind of a 'drive you nuts' itchy sensation. Then I got burningpain up and down the whole vulva. Along with all of this, I had bladder problems(urgency--no infection). I got on Elavil a year ago and recently 'got off it' to trysomething else. The bladder issue seems to be gone. The itching sensation was relieved bythe Elavil and is now ok with the new medicine (a different anit-depressant). But, theburning is still there and I have no sex life at all. Sex just makes me feel worse forweeks afterward so I just don't bother. After switching medicines, I got a bacterialinfection and then a yeast infection (just finished med. today for that). So I don't knowif the burning is just residual from that or if the burning is the vulvodynia. Incidentally, I tried to explain to my specialist how different my 2 bouts w/vulvodyniaare, but it doesn't seem to make a bit of difference to her. Do you guys get discouraged that they'll never find a cure?? It seems hopelesssometimes. -Cheryl
CommentFor the gal (sorry, don't have time to go back & check who) wrote about beinguncomfortable on different sorts of vaginal creams, my doctor has told me never to usemedicines containing propylene glycol, as they tend to irritate V sufferers.
CommentThe ox-absorb is put out by Vitaline. They are a scandinavian company. You cannot orderdirectly from the website. Unless you are a licensed physician or co. However, you cancontact what used to be known as L & H Vitamins. They are now vitamins.com. The tollfree number is 1-800-221-1152. It may be wise to order 2 bottles at a time. If you arelike me and take up to 9 a day, it dwindles pretty quickly. Remember, they aren't for thepain, but do aid in the digestion of foods, and that could help you. Best regards, laurel
CommentTo D; Not alot has worked for my symptoms, that is why I am having surgery on the 15thof this month. I have tryed so many things! One thing has helped me, and that is Estrace cream. My vestibulitis was set off by Atrophic Vaginitis: http://obgyn.uihc.uiowa.edu/Patinfo/Vulvar/vaginitis.htm This happened after years of taking Depo-Provera. My vulva became red and inflammed,the tissue of my vulva and the vaginal linning became paper thin. I had almost no vaginallubrication whatsoever and my vulva was very dry. I would tear easily with intercourse. Ialso had some burning and urgency with urination. My doctor had me use an inch of Estrace cream applyed directly to my vestibulary glands(especialy the bartholin's glands), the hymen, and the urethra. I have also been using theEstring vaginal ring insert. The Atrophic vaginitis has improved considerably. Too bad I did not stop takeing Deposooner. Or found this specialist sooner. Maby I could have caught it before thevestibulitis really set in. Christina
CommentI want to be healed to have crazy, spontaneous sex with my husband, to feel like awoman, be able to urinate after intercourse without pain, to lie in bed after sex and notrun to the tub, to not cry, to wear tight jeans, not have to search for answers, not cryin front of my computer monitor
CommentTO THE LAST POSTER: You've said exactly what I feel. My poor husband is just asfrustrated as I am!!! He doesn't want to hurt me and I'm scared to death to haveintercourse and then be in agony for God knows how long afterwards. It's not even worthit.
CommentI just wrote my idea for a show at Oprah.com.. They will at least read it and if enoughfolks write who knows. The attention can't hurt and might kick start something. I know shehasn't expressed interest in the past but maybe the time is right. Just reading the lastpost got me thinking as I often do, making love with no restrictions, with all the passionand none of the apprehension. A nice thought but the reality is what we have to deal with.Patience and time may bring us some resolve, in the mean time try to keep your thoughts towhat you can do given the restrictions of the illness.
CommentCheryl & D: More on the gene (only part of the article found on Medscape). Someone asked me if thegene was rare or common. Here is the scientific answer: At Weill Medical College, researchers discovered a link between the rare IL-1 gene andvulvar vestibulitis. Stephen S. Witkin, PhD, one of the study's researchers and anassociate professor of immunology in obstetrics and gynecology at Weill, says less than10% of women in the general population normally have this gene. The Weill study, however,found that 52.9% of women with vulvar vestibulitis had it. Previous studies had shown that people with the rare form of the IL-1 receptorantagonist gene make fewer interleukin-1 receptor antagonists. This affects their abilityto shut off the inflammation process, so they have more severe and longer-lastinginflammation than do people who don't have the uncommon version of the gene. This sameinability to end the inflammation process also occurs in rheumatoid arthritis,inflammatory bowel disease, and other autoimmune disorders. The discovery of a link between this rare gene and vulvar vestibulitis means that agenetic analysis may be able to identify women at risk for the disorder. The finding mayalso dignify many of the women who have been told their symptoms are psychosomatic."A lot of women with this condition go to many different doctors and are often toldthat there's nothing wrong, that it's all psychological," says Witkin. "Patientsare very relieved to have a diagnosis and to know that they are not crazy." Presence of the rare form of the IL-1 gene does not guarantee women will get vulvarvestibulitis. "This form of the gene is the susceptibility factor," says Witkin."Women need something that will trigger inflammation [in order to develop thedisease]. If they never have the trigger, they could have this form of the gene and neverget symptoms."
CommentTo everyone who has been writing their symptoms--I really appreciate it. i haveconstant burning all day long (although only around the vestibule) and i just do not knowwhether i would be a candidate for surgery, for instance. i am very excited about thediscovery of the gene. i called my doctor and hope to hear back from her. susan, thanks for your info! I have tried both elavil and nortriptyline--can anybody recommend anotheranti-depressant which helps the pain? i am sure my doctor will have one in mind. I justfeel so discouraged because 9 months later neither drug has helped a bit. courage everyone--i am convined we will lead happy lives regardless of the suffering wenow endure. my thoughts are withou all.
CommentTO D: You could try Paxil or Effexor.
CommentI had real success with the anti depressant sertraline (mine came under the brand nameLustral) I only needed 50mg a day, whereas I was taking hundreds of mg a day ofamitryptiline which did nothing but make me gain weight. Hope you find something thatworks for you.
CommentFor D, I haven't had any success with Elavil either. I also have constant burning allwhile I am sitting down. When I stand, it seems to be fine. I am trying anotheranti-depressant called Pamelor. I will post back later when or if I see any changes. Doyou have a job that you sit down or is the burning also when you are standing up?
CommentHello We have had a vulvodynia support group in Wellington, New Zealand since 1999. Wehave recently set up a website (www.geocities.com/wellingtonbvs) and now have an emailaddress also: wellingtonbvs@yahoo.com. We would really love to hear from any New Zealandwomen who have vulvodynia symptoms! ALso, if other groups could add our link to their webpage, that would be great. It isstill under construction but should be up and running within the next week. If anyonewould like their website on our page as a link, please email me. Thank you! Rachel
CommentAmen ( to the posting on May 8th ) about wanting to have spontenous sex with yourhusband instead of crying in front of your computer monitor!!!! My first writing was onMay 3. I am still strongly considering having surgery with Dr. Marinoff for my VV. Ifanyone out there has had any experiences with the vestibulectomy-- please let me know.Although, I feel like it is my only option left, I am terrified that It could make itworse. Thanks...
CommentI'm new to this site and have been suffering from vulvodynia for two years. After beingtold I might be allergic to semen, might have a yeast infection, might have a fungus,might have chlamydia, might be allergic to latex, might just need some lube, might becreating everything in my head, and must just be having some kind of bizzare kinky sexbecause there's no other explanation, I was finally diagnosed with vulvodynia. Thatconversation went something like this : Well, we've decided you have vulvodynia. - What'sthat? - That's vaginal pain during intercourse. So what does that mean. - That means ithurts. - But why does it hurt? - Because you have vulvodynia. ... The cure: don't havesex. Aftter hormones, creams lubricants, and every different type of birth control, itstill hurts. I feel like a lab rat, every time I try to grab a food pellet, I get zapped.I feel like making love is bad. I feel like I must deserve this for some reason. I'm notreligious, but I feel like God is punishing me. I'm married, I love mu husband very much.I'm kind to the people around me. I'm not doing anything wrong, but suddenly, for noreason, I have to suffer. No, we have to suffer. I see the pain in my husband's eyes, thefear he has of hurting me. It kills me.
CommentRead these in the Doctor's Book of Home Remedies. Thought they might help some."Vaginitis is basically a catch-all phrase for any kind of inflammation in thevaginal area," says Ellen Yankauskas, M.D., director of the Women's Center for familyHealth in Atascodero, California. "Inflammations can result from an infection, achemical irritation from douche products, spermicides or condoms or simply not havingenough estrogen." "Women with recurring vaginitis might want to consider ausually unlikely suspect--stress." (Susan Doughty, R.N., who is a nurse practitionerat Women to Women, a clinic in Yarmouth, Maine. "Some women experience vaginalitching just prior to their menstrual flow. Once their period ends, the itching seems tostop until the following month, observes Susan Doughty. Your doctor may tell you that thiscondition, cytolytic vaginosis, is caused by an overgrowth of bacteria in the presence ofestrogen. Since this is just an imbalance (not a true infection), you may be able to clearit up with a home-prepared remedy. The remedy, according to Doughty: mix two tablespoonsof baking soda in one quart of warm water and douch twice daily. The first douching shouldbe just before the time of the month when symptoms typically appear. After that, continueto douche twice daily as long as you have the symptoms." I thought that this may helpthose who have the itching, especially near menstruation. Could also help those withcandida albicans. Talk soon-laurel
CommentD; I took Elivil too and it didnt do anything for me. My doctor now has me on Zoloft. Christina
CommentSorry, forgot to add. I think that many of us are suffering from too much yeast in thebody. A most likely cause of vulvar pain. Especially since most of us attest toantibiotics causing our trouble. If you have an infection, before using antibiotics, youmay first want to try douching with betadine and water. It is available in the drug store.Also, our partners may be reinfecting us with yeast in the semen if one is particularlyvulnerable to them (infections). The mere contact with the vulva may exacerbate symptoms.Also, to see if yeast is the cause of the vulvar pain, here are some things you may wantto try: avoid sugar (candy, cakes, pies), anything with white,refined, or powdered sugar.Avoid bread, mushrooms, alcohol. Susan Doughty states, "patients with chronic yeastinfections who avoid these foods for three to six months will often notice significantimprovement." Wear baggy clothing. Wear pure cotton undies, and wash them thoroughlywith dye and perfume free detergents. Yeast love the moist, dark, and warm. Stay away fromLycra spandex, polyester, leather, and other fabrics that do not breathe. Don't lay aroundin a wet bathing suit. Don't douche TOO often, only when necessary. laurel
CommentChristina: does the zoloft help your pain? To the woman in england: is Sertraline an SSRI? Thanks!
CommentTo the person who posted the information from Medscape... I found the article on Medscape directly from the Am. J Obstet Gynecol (which you haveto pay to view). Is this what you're talking about?? Or was there something else that toldthe article in layman's terms?
CommentCheryl: Now I can't find it again! I can tell you this: I didn't pay for it. I remembersearching under "vulvodynia ledger" (Ledger being the last name of one of thedoctors who did the study). Now I am only finding a synopsis of the study. Anyway, yourdoctor should know how to find it. She could even call him and ask. I listed his name andaffiliation above.
CommentI check in here periodically and have noticed a recent trend in the posts that I wantedto comment on. Just because we have vulvodynia, that does not mean that we cannot have asatisfactory sex life, or that we don't deserve to date! I'm in a relationship, and waswith my current partner when I was diagnosed a year ago. I was terrified that my diagnosiswas going to encourage him to leave me. Instead, he stood by me. We have had to startcommunicating a lot more about our sexuality, and getting more creative about what we do.But penetrative sex is not the only kind of sex to have! Don't sacrifice your right to arelationship or your desire for sex to this condition! I know it's hard, and it's easiersaid than done. But beyond the feelings of defeat and despair are other options forphysical closeness and mutual satisfaction. Good luck to us all, Erica
CommentThought I'd share some interesting links I found today: A extensive list of foods in low-med-high oxalate categories: An article ON the article about the gene (interesting, I thought): An article on autoimmune diseases: http://www.aarda.org/women.html A FAQ vulva related site: http://www.wdxcyber.com/mvulva.htm A question: Do we know for sure that Vulvodynia is an autoimmune disease? I've heardmention, but nothing definite. I thought it was interesting that the above site onautoimmune diseases came up when I did a search on "vestibulities + gene". Yetthere was no mention of our disease on their website. -Cheryl (Who's having a very low pain day today---Yippeee! I'm enjoying it while I'vegot it!!!)
CommentFor those who have a yeast problem, look up www.nidlink.com/~mastent/yeastfre.html Doesmention the link between yeast problems and the birth control pill, and other gynproblems. Definitely a problem for us with vulvovaginitis.
CommentHi, Hope everyone is feeling OK ( I know that some of us aren't but I want to staypositive!). I am wondering about those few ladies besides Jennifer who have gone ordecided to go to Dr. Toth in NYC. Did you go? What happened? Are you on the IV? I am surethat many of us have a kind of PID ( at least, those of us who continue to get infectionsfor seemingly no reason). Please keep us updated on the IV antibiotic thing. I know that many of you think that the antibiotics caused all of your pain but all Iknow is that when I am on certain antibiotics, I am able to function so much better thanwithout them. I do think that we all have different causes for this thing though so maybesome of you aren't interested in the IV antibiotic theory - but I think that it helps allof us every time any of us get past this thing no matter how they do it! Pain free days to you all. A
CommentD; I have actually had some improvement in my symptoms, but of course I am also on Estracecream, and Estring for my vestibulitis as well. I have to say that it is giving me less side effects then the Elivel did. Elivil mademe horribly constipated and I have IBS already. The abdominal pain from my colon beingblocked was increadible. There was one morning I woke up and my abdomen hurt so bad that Ihad my husband stay home in the morning to make sure it wasnt my appendix or anything. Hada CAT scan, upper GI, it turns out that it was just the Elivel slowing down my colon evenmore then it was already. Elivil also made me sleepy, and Zoloft dosent. Christina
CommentTo A: I am one of the people who is seeing Dr. Toth and I am currently on the IV. Iposted about this in this guestbook, if you scroll back or search on my name you shouldfind it. I am doing well and will keep everyone posted on my progress. Dr. Toth has beengreat in terms of being available, calling me back when I had questions,etc. I have to goto work but I will try and write more later.
CommentChristina-- that is interesting that an SSRI is helping you with the pain. my doctorjust switched me yesterday to DESIPRAMINE. she said that she has had no luck with SSRIs,although i have spoken with a number of women whose pain improved with prozac or zoloft.the elavil made me so tired i could not get out of bed! has anyone been on thedesipramine? i would love some feedback.
CommentI've just started taking guaifenesin, in the hopes of helping my vulvodynia. The following web page explains: Here is more information on this treatment: http://www.guaidoc.com/index.html The doctor who stumbled onto this treatment feels that vulvodynia is a part offibromyalgia. He says that Guaifenesin is mildly uricosuric and that he has found it tohelp his fibromyalgia patients. He suspects that the body cells of fibromyalgics retainabnormal amounts of substances that should have been excreted by the kidneys. (KEEP INMIND THAT HE FEELS THAT VULVODYNIA IS A PART OF FIBROMYALGIA). This is what led me to wantto try this treatment. My gynecologist never heard of it (but, then WHAT ELSE IS NEW??).:) My doctors have truly been of little help to me in dealing with this. I've had toresearch everything MYSELF and bring it to THEM! It still amazes me how ignorant they areabout this disease. Anyways, this whole theory that body cells of fibromyalgics retaining abnormal amountsof substances that should have been excreted by the kidneys has got me wondering. . . I'venever been one who drank alot of fluids. Having to use the bathroom all during the day issuch a "bother" and I've kind of got this "thing" about publicbathrooms: I'd just rather not use them if at all possible. I'm wondering if this is asimilarity: maybe if we don't drink enough, that we aren't excreting these"substances" that we SHOULD be getting rid of???? What to you all think? Needless to say, I am now drinking about 50-64 ounces of water a day (sometimes more).I've had to "suck it up" and use public bathrooms, but, if it helps with thevulvodynia, it'll be worth it! Even if it doesn't help with the vulvodynia, it's the rightthing to do. I realize what a dummy I've been about this in the past!! :) I'll let you all know how this guaifenesin treatment goes.
CommentDoes anyone feel that taking vitamins causes any vulvar burning? I read in the LowOxalate Cookbook that large doses of B6 help some women with Vulvodynia. It hasn't helpedme. I also take a multi and a bunch of other supplements. Any thoughts on this?
CommentStephanie -- I was reading your comments back on 04/26/01 and my heart just went out toyou about burning so badly that you had to leave during the funeral service. I rememberthose days so well when sitting was nearly impossible. The most embarrassing thing thathappened to me was during church service. In order to be able to sit through the service,I was wearing one of my little home-made icepacks and this one sprang a leak. The wholebackside of my dress was wet! The only thing I could do was wait until most everyone hadleft the sanctuary and then slip out with my purse dangling behind me to help cover thearea -- how embarrassing! Wearing an icepack was the only way I could sit for any lengthof time, but after that experience I started double bagging them!
CommentFor Kr, That was a nightmare. I really have a problem sitting while I am @ church now.I am going to try the ice packs. Do you apply them direclty to the area? I accept allcomments. I am just trying to beat this thing. It's so hard. Thanks!
CommentTo Stephanie -- I made myself little icepacks simply by putting an icecube in a smallfreezer bag, pressing all the air out then sealing it, covering the cube area with a stripof plain white paper towel to help absorb moisture, and "wedging" the cubedirectly against my vaginal opening. Of course the cube would eventually melt, so Icarried extra ones in a freezer bag in my purse for replacements. I could typically getenough comfort out of one cube to be able to sit through a service. At work I had theluxury of being able to keep cubes in our freezer for fresh replacements throughout theday. I know this sounds like a terrific hassle, but it was the only way I could sit allday at work. And those cubes felt soooo good! For me, it was well worth the hassle to getrelief from the constant burning. In fact, I wish someone would invent a devicespecifically made for women's anatomy that would stay cold enough to provide long periodsof relief. This would not solve the sexual difficulties, but at least it would give someof us enough relief to be able to travel, go to a movie, sit through a service, work atour jobs . . . -- all those "sitting" activities others take for granted.
CommentTo the person wondering about VITAMINS: I've heard that Vitamin C supplements are high in oxalates, so if you believe in thiswhole oxalate theory, that may cause more symptoms. Not sure about other vitamins. I'venever read anything about this.
CommentKR, I don't mind the "hassle". Anything would help this burning. I willdefinitely try that. Any other suggestions just let me know.
CommentFor D- I just started on Desparimine about a month ago. I was on Elavil for a year and ithelped with the day-to-day pain, but I still wasn't able to have sex. I also had troublewith being out of it, panic attacks and saying weird stuff. (For instance I told a womanwho just had a manicure that her nails "SMELLED nice" instead of "LOOKEDnice".) So my Dr. switched me to an anti-convulsant which made me very sick to mystomach & dizzy. About 4 weeks ago she put me on Desparimine. Unfortunately when Iwent off the Elavil all my symptoms returned and I'm still not back to the improved levelI was with the Elavil. I do feel better than when I 1st started the Desparimine and I've spent the last2+weeks with first a bacterial infection and now a yeast infection. Yesterday and todayI've felt quite a bit better, but not "normal". I'm not fully recovered from theinfections so I can't say whether or not the new medicine is working to it's fullpotential. I'm up to 75 mg and I'm supposed to stay at that level until I see them againon June 8th. By the way, I noticed that your Dr. is a "she". I'm seeing a female dr. inAnn Arbor, Dr. Haefner. Any chance we're seeing the same dr.? -Cheryl
CommentRe: Ice packs. I have a friend w/MS. She has a vest w/pockets for ice packs. She carts around a coolerwith extra ice packs when necessary. Since I feel much better when I'm cool, I'veconsidered getting a vest to just keep my body temp cooler. I wonder if they could makesomething similar for vulvar pain--like a garter belt or something.
CommentHi girls. I just wanted to add that you have to be careful when applying ice, not to"burn" the area. After a while it numbs the area and you can't feel that you maybe burning the skin. You could cause more discomfort in the long run. I used to use iceall the time, especially when it was the only instant relief from a flareup. And it workedgreat. Then I read that heat was better for a flareup or pain because it generated bloodcirculation to the area. Cold does the opposite. Heat was the last thing I wanted to puton it. Honestly, I broke down and tried it when I had a major attack and it workedfabulous. I use my heating pad on days when I don't even have pain at all and it workswonders. Can stop it in it's tracks! I love to take my heating pad when I travel,especially after those long flights and car rides. I bet a heating bottle would work justas good while sitting in the car. Try getting a heating pad, but be careful not to adjustthe temp to high. Or use a towel to wrap around it. I think that you will find greatrelief from it. Talk soon! laurel
CommentI am currently seeing Dr. Toth and doing an antibiotic IV. I went to him after seeingvarious other doctors for vestibulitis, which I was diagnosed with last year. I decided togo to Toth because I felt in my gut that what I had was an infection of some sort. Dr.Toth did tests on both myself and my husband. The tests he does are much more thoroughthan what you would do in a regular obgyn's office. He tests for anerobic bacteria whichdo not survive sitting around on a slide waiting to be sent to the lab. My culture cameback negative for mycoplasma, chlamydia, yeast and aerobic bacteria, but I had a heavygrowth of Actinomyces israelii (an anerobic bacteria). My husband's culture hadstreptococcus intermedius and propionibacterium granulosum (2 anerobic bacteria), andchlamydia. I had heard of chlamydia, but didn't know exactly what it was, so I looked itup on the internet. Turns out its a bacterial infection that is sexually transmitted, andit's one of the most common ones. The reason I didn't test positive for chlamydia is thatI had started taking antibiotics for the vestibulitis with the doctor I saw prior to Dr.Toth, and probably knocked some of it out of my system. The culture he did was just fromthe vagina so it wouldn't show anything elsewhere in your system. He said it was quitepossible that I would have the chlamydia elsewhere, as it also affects your reproductiveorgans and other parts of your body. I am printing this from information I found aboutChlamydia on the internet...Men and women with chlamydial infections may experienceabnormal genital discharge or pain during urination. These early symptoms may be absent orvery mild, but if they occur, they will do so within 1 to 3 weeks of exposure. One ofevery two women and one of every four infected men may have no symptoms at all. As aresult, the disease is often not diagnosed until complications develop. In addition topelvic inflammatory disease, chlamydia can cause an inflamed rectum and conjunctivitis(inflammation of the lining of the eye). The bacteria have also been found in the throatas a result of oral sexual contact with an infected partner. This struck me when I read itbecause one of the symptoms I was having (although I didn't think it was related to myvestibulitis) is that my eyes hurt. It felt like if I pressed on the side of them theywere irritated and sore. I did not experience any pain with my rectum but I know therehave been others who posted that they did have pain there. Since I started the IV, my eyesare not sore, I feel better and I no longer feel like I am oozing something "downthere". Sorry to get graphic, girls, but that's what it has felt like for the pastyear. Not a lot of discharge, just a constant oozing sensation. I will finish the IV in afew days. My husband will have to be re-tested several times to make sure he is"clean". (my husband opted to take oral antibiotics for this, although Toth hadrecommended the IV for him also) I decided to do the IV as I am also trying to getpregnant, and wanted to give my body the best chance to do so. Ok this has gotten reallylong....but I promised I would write more. Take care everyone.
CommentHi all. It's been a while since my last posting. I've not been on for days because I'vebeen busy and all. Anyways, I'm back now.; To Stephonie, I use to go to church all the time. But when I first got this uglydisorder, It was very hard for me to go to work and sit down for 8 hours a day let alonego to church and sit on those hard chairs for 3 hours. So I don't even go to churchanymore. Plus I already told you how I feel about faith and all that so I just don't evengo anymore. To Eva, when I read your posting, I was shocked because you have said the words ofexactly how I feel. I am a very nice person and treat people nice. I WAS even a christian.Then suddenly this condition came into my life and destroyd me a lot. I have not sufferedwith the itching and irritations in months thanks to the vanicream. And I have had surgery(a partial vulvectomy) 14 weeks ago today and although I'm doing SO MUCH better than thevery beginning, I still think that I'm being punished by god. This is so crazy! I don'tunderstand what reason any of us should suffer! But thanks to my husband, I feel that heis the one who's keeping the faith for me. Cause I've lost faith along time ago. Anyways,but even though I'm doing a lot better and starting to feel normal again, I still have towatch what I eat because if I eat high oxolate foods, I'll hurt and I don't want that. Last but definitely not least, Cristina- you are about to have your surgery in 4 days;I wish you much of a successful surgery. I really do! Good luck to you and I hope it allworks out. OH yeah, and to D, I don't experience much symptons. I use to experience a lot but I'vecome a long way. The only thing I can tell you is that I always follow a regimen and havebeen doing so for 2 years now. I MUST watch what I eat cause If I eat the wrong thing,I'll begin to hurt again. Oh and when I get my period, I hurt just for no reason until myperiod is over. When I say I hurt, It's only on the top part of my vulva. My vestibularglands where removed so I don't have a problem down there. Just the top part of my vulvawill hurt if I drink or eat the wrong foods. Hi Laurel! I haven't had sexual intercourse in 2 years so I don't even know what it's going tofeel like after I completely heal. I have another 2 weeks to perhaps 3 months tocompletely heal. I can't wait!
CommentDeborah, Thats interesting what you said about drinking more water. I have been trying to drinkmore water too because of my IBS. Now that you mention it, I have been really buissylately getting ready for my surgery trip and I havent been drinking as much water as Iusually have been latley. I have also noticed that my vestibulitis symptoms are a littleworse just thease past few days. Wonder if youve got something there. Lynn, Thank you for the warm thoughts, I'm starting to get nervous! I hope my surgeryis as successful as yours was:). Your support is greatly apreciated. I'm so glad I foundthis site! Christina
CommentCosmetics and Breast Cancer. It is truly tragic that so many women have been andcontinue to be victimized and devastated by breast cancer. Unknown to most women is thefact that breast cancer is essentially a preventable disease even among those women with afamily history of this disease. Because of a gross lack of knowledge or willful blindness,most women appear to be unaware of the fact that many of their daily cosmetics contain avariety of carcinogens. Alcohol is one of the known causes of invasive breast cancer.Alcohol is also the main ingredient in perfumes, fragrances, hair sprays, astringents andmany other personal care products. These products are in widespread use by girls andwomen. When applied to human skin, alcohol and many other cosmetic carcinogens areabsorbed into the bloodstream within seconds. In recognition of the fact that alcohol maypose a potential health risk, even the cosmetic, fragrance and toiletry industries haveplaced the use of alcohol in their products under a self-imposed review. A study showedthat chemical contaminants, including ingredients from perfumes, are present in breastmilk. Some of these contaminants are carcinogenic in humans. Breast-feeding mothers passon these carcinogens to their babies. In what appears to be a clear conflict of interest because of a profit motive, manycancer treatment facilities in many parts of world routinely distribute or facilitate thedistribution of free cosmetics to breast cancer patients. Reportedly, some of the breastcancer patients accept and consume these gifts in defiance of the age-old axiom,"there are no free lunches." Women should take control of their lives and stopleaving the primary prevention of breast cancer to profiteering breast health advocates.NOTE: The medical information summarized herein was taken from mainstream medical journalsthat are in the public domain or the Web site of the cosmetic industry. www.CancerResearchAmerica.org
CommentDr. Coleman, thank you for the post. I have often thought that hair dyes, nail polish& remover, etc. weren't very healthy but I never thought about perfume.
CommentI too have IBS. it is caused by my thyroid condition. Have you tried taking theOx-Absorb? Since you have the vulvodynia, you may want to try it. It is all natural. bestof luck and get well soon. Hello to Lynn. Good to see you back. Your input helps out a lot. Talk soon, laurel
CommentCristina, what is ISB? I drink plenty of water throughout the day and I know that that helps me feel better.When I don't get enough water, I'll begin to feel my nerves tingling in my vulva andthat's like a warning for me to go get some water. I swear, the water work well for me.
CommentIBS is irritable bowel syndrome. Usually bouts of constipation (I can go 2 weeks withno bowel movement! Very bloating and uncomfortable) followed by diarrhea, but eachindividual varies. It can be caused by a lot of things, but I know mine has to do with anunderactive thyroid. It can also be due to fibromyalgia or too much yeast in the body thatthe immune system cannot rid itself of. All are due to an imbalance in one's immunesystem. As for the water, I completely agree. If I eat a meal too large, and/or with toomuch sodium, it makes my urine strong and the burning usually begins 1-3 hours afterconsumption. Or less frequent. It also may be accompanied by burning bladder. It may lastfor 4-5 voids even with the water, but you have to keep it coming or it will be evenworse. After I eat, I make sure that I drink loads of water (I do all day anyway). It canprevent the body from absorbing the food and it exits a lot quicker. If you constantlydrink it like I do, it does help a lot, but not everything works 100% of the time, as youare well aware of I'm sure. Does that help? Take care and glad to see a surgery successstory! laurel
CommentThanks Laurel, Oh I have IBS sometimes and but not a lot. It's funny that I just foundout that some people have that problem. I thought it was just me. I use to eat my TotalRaison Brand and all those healthy grain cereals to help with the constipation, but as Ihave just recently learned, wheat is high oxolates so I have to stay away from that.Anyways, the water is helping me a lot though but it's not as effective as my wheat cerealwith all that fiber. I appreciate your input Laurel. You always have some good informationfor us all. You've done your research I see. I've done a lot to but not as much as youhave. Anyways, can you please explain to me what is Fibromylgia? I see a lot of you sufferfrom that and perhaps I do as well but I'm not sure what that is. I go to visit my doctorin 7 days. Perhaps he can test me for that as well as the Atypical Yeast Infection. Talkto you all later.
CommentNew comentor- A 20 year on and off thing Hello Ladies - Im so glad I found you, Im twoyears pain free but still have warning symptoms. I try to abstain from sugar (whiteprocessed sugar cane) and use papayae, as a fruit juice, (It really works) to controlyeast outbreaks. I was previously diagnosed as having herpes (1980) during the herpesscare of the 80's, but never had any sores or scabbining asscociated with herpes, justpain and swelling of outer vulva on one side and pain with sex in vagina and also cervicalarea. I am of mixed norweigian/ amer-indian decent so should naturaly avoid all southernhemisphere exclusive food- (sugar from cane, citrus fruit) Sugar has a bad immediatereaction for me in general, and citrus fruit was a 35 year revelation. Too much acid. Thepapayea discovery was by accident during a particularly bad yeast out break. Had given upon all prescribed yeast medications for years and just suffered with the commings andgoings of yeast. The papayea is a 24 hour cure for me. My gp now recomends this as a firstcourse of action for out of control yeast. She also recomends straight up cranberry juiceas a bladder clean up. The hard part is finding a juice drink that contains real papayea.I think my yeast infections (and old prescribed fungicides and antibiotics) and vulva andvaginal / cervical pain were realated. I don't have pain anymore but I still have a deepweird dread of sex. Im 42. The vulva pain was bad but the cervix pain was the worst. Ican't seem to get over it, even though its not there anymore. *Of particular intrest tothe Dr. Bro's- Had a friend who 2 years ago fractured some vertabrae in his back. Amoungstthe 'numerous' 'uncomfortatable' symptoms that aroused during healing and recovery were anunexplainable pain and burning in the genital area, that were accompanied at times byphysical symptoms such as swelling and appearance of inflamnation. These symptoms lessonedbut did not wholley dissapear with recovery. Just something to think about.
CommentNew comentor- A 20 year on and off thing Hello Ladies - Im so glad I found you, Im twoyears pain free but still have warning symptoms. I try to abstain from sugar (whiteprocessed sugar cane) and use papayae, as a fruit juice, (It really works) to controlyeast outbreaks. I was previously diagnosed as having herpes (1980) during the herpesscare of the 80's, but never had any sores or scabbining asscociated with herpes, justpain and swelling of outer vulva on one side and pain with sex in vagina and also cervicalarea. I am of mixed norweigian/ amer-indian decent so should naturaly avoid all southernhemisphere exclusive food- (sugar from cane, citrus fruit) Sugar has a bad immediatereaction for me in general, and citrus fruit was a 35 year revelation. Too much acid. Thepapayea discovery was by accident during a particularly bad yeast out break. Had given upon all prescribed yeast medications for years and just suffered with the commings andgoings of yeast. The papayea is a 24 hour cure for me. My gp now recomends this as a firstcourse of action for out of control yeast. She also recomends straight up cranberry juiceas a bladder clean up. The hard part is finding a juice drink that contains real papayea.I think my yeast infections (and old prescribed fungicides and antibiotics) and vulva andvaginal / cervical pain were realated. I don't have pain anymore but I still have a deepweird dread of sex. Im 42. The vulva pain was bad but the cervix pain was the worst. Ican't seem to get over it, even though its not there anymore. *Of particular intrest tothe Dr. Bro's- Had a friend who 2 years ago fractured some vertabrae in his back. Amoungstthe 'numerous' 'uncomfortatable' symptoms that aroused during healing and recovery were anunexplainable pain and burning in the genital area, that were accompanied at times byphysical symptoms such as swelling and appearance of inflamnation. These symptoms lessonedbut did not wholley dissapear with recovery. Just something to think about.
CommentLynn, I see that someone already answered your question about IBS (Irritable BowelSyndrome), I have noticed that a lot of women with vulvodynia suffer from this. Of coursea lot of women in general suffer. I read somewere that it is one in five women who haveIBS. If you are doing the Low Oxcelate thing, treating the constipation could be a problemwith most fiber supplements, and foods people eat to keep regular containing wheat. What Iuse is Colace pills without the laxitive (Pericolace). My constipation is so bad that Ihave to use 2 a day every day. Of course you shouldnt use the colace all the time if youdont need it. Without the laxitive it is a less likley to make you dependent on using them(laxitive overuse can cause you to become dependent on it to make a bowel movement).Colace is safer, and gentaler on the digestive system. Christina
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CommentFor anyone seeking a Dr. in Australia, I would highly recommend Dr. Richard Reid. I wasa patient of his in the States and he changed my life. I do not believe sugery should beused as a first resort, but for those who have tried pretty much everything else I thinkit may be the best option. I have had vulvar vestibulitis for 10 years. I had a pretty badcase of it and ended up dropping out of college because my pain was so severe. When Ifinally found Dr. Reid, I had tried every treatment known for vulvodynia. Every other Dr.had given up on me and said there was nothing they could do to help. I went to see Dr.Reid and he was great. He performed two surgeries on me in which I got about 85% better.He removed my Bartholin glands and did laser surgery. He is a wonderful Dr. and I highlyrecommend him. I am currently 9 weeks pregnant and my question is whether or not anyonehas any information about vulvodynia and childbirth. I am hoping to find some statisticalinformation about vaginal births versus c-sections for vulvodynia patients. I am worriedthat having a vaginal birth may reverse the effects of my previous surgeries. Does anyonehave any information or know where I can find information on this subject?
CommentFrank, I wanted to comment on one of your entries. You mentioned that your wife frequentlygets UTIs or yeast infections after intercourse or oral sex. This never used to happen tome...at least 10 yrs. ago when I first became sexually active. With my last partner, whomI was with for 2 1/2 yrs., I knew that if I didn't get up and wash my vulvar areaIMMEDIATELY after intercourse or oral sex that I would get a UTI or yeast infection,respectively. What I do is sit on the toilet and splash a cup or two of water on mygenitial area. Sometimes I take a quick shower just to wash the area. My boyfriend alwaysthought this practice was weird, but it really saved me having to battle with theseinfections for weeks afterwards. The mouth DOES have a lot of bacteria, no matter howclean you are. Don't take it personally! You are a wonderful man to care so much. I'm not with this boyfriend anymore, and I'm reluctant to get into anotherrelationship. I feel like VV is something I should advertise up front, rather thanslapping it on the guy after we're really interested in one another. Why, I think, wouldsome guy want me when there are millions of women out there with perfect vulvas? Itdepresses me quite a bit. I'm trying to direct my energy and interest away from men andtowards connecting with women, gardening, reading, etc. It works sometimes.... Best ofluck and lots of love to all. Congratulations to all who have understanding men in theirlives. Ciao.
CommentTo Rebecca: Thanks for the comments, no offense taken. You are right about the mouthand germs. My wife seems to good for awhile with the infections, whenever she mentionsitching I think here goes another infection. Several days ago we had oral sex and the nextday I looked at her vulva, she was red and raw. This is something that also never had sucha damaging result. My mouth is cleaner than ever before I am very consious of oral hygene,I am gentle when we are intimate and still she has this reaction. She does get some reliefusing the Vanicream as a moisturizer on her vulva. One last comment I can understand yourreservation with getting involved with another man and relationship, however healthyrelationships with caring people involve more than genitals. Sure it takes risk on yourpart and understanding on the part of your future partner but nothing ventured nothinggained. There may be some great guy out there who would love to be with you or one of theother women suffering with these illnesses, give them a chance to make up their own mind.I remember as a young man thinking I can't be someones husband because I have abdominalscars and I get stomach aches etc, etc.. While my looks are not for every woman my wifeseems pleased with them and she and I are great together. There isn't alot of perfect outthere even women with healthy vulvas have problems. Best of luck!!
CommentTo D from 'the woman in England'! - Sorry, can't remember if Lustral is an SSRI. It wasso successful for me I don't use it anymore. What I mean by that is that it took the paindown quite substantially and I then stopped taking it as I want to try and get pregnantsoon. The pain has not got worse but has stayed at its reduced level. Laurel - thanks for pointing out the yeast connection again. I have had a verysignificant healing over the last month after seeing a kineseologist. Sorry if I amtelling folks what you already know, but kineseologists test your muscle strength whilstyou lie down and hold different tinctures of food and other substances on you. You thenhave to resist them pushing your right arm in four different directions. It is blindtesting so you don't know what each substance is. Well, I was happily resisting her arm tolots of different food stuffs and thinking 'well, this is all a bit pointless' when my armsuddenly collapsed! Honestly, I was so surprised and there was nothing I could do to stopit. The substance was...candida. She said mine wasn't the highest level she had evertested for but it was still pretty high. So I have been on an anti candida diet for thelast six weeks and feel SO much better. When I went back to see the kineseologist twoweeks ago my candida had gone! She said complementary practitioners believe that for every month you have been ill ittakes a month to heal so I am just two weeks away from maybe being completely better!?! The anti candida diet is very similar to the low oxalate and so I wonder if it is infact not the lack of oxalates which help some women but the fact they are not 'feeding'the candida in their system (if that is indeed the root of their vulvodynia - I know wasmine as it started after horrendous thrush). I also just want to mention even more significant healing this weekend. I have juststarted taking St Johns Wort and Kava Kava after reading(www.tldp.com/issue/166/166vulvo.htm) they can be helpful to some women. When I say juststarted, I mean yesterday but today I woke up and am still reeling at the fact myvulvodynia had virtually gone. I hesitate to mention this last bit as I know the strength of feeling it stirs up but Ifeel this may have been the last bit in the puzzle for me at least. Even though I havebeen getting better with the diet I was still in a lot of pain and yesterday and, as Iexpect happens with a lot of us, I wept with the pain and frustration. And I got angrywith everything including God. And I made a very desperate angry prayer (yes, I haveprayed a lot in the past to no avail so entirely understand why some feel it's pointless -I did) Today the vulvodynia is barely there. I can't say what the answer is. Perhaps all ornone of the above. I can barely believe I am typing this because my vulvodynia used to beso bad I could hardly walk. I hope none of this offends and some of it helps. Just wantedto share...
CommentHappy Mother's Day to all of mothers!
CommentHappy Mother's Day to all of us mothers!
CommentJust a word concerning Kava Kava; last year I was treated for kidney stones and told tofollow a low oxylate diet. Black pepper is high in oxylates and kava kava is a member ofthe pepper family. I don't know if it is high in oxylates and when I researched it therewas no mention just warnings not to use it if pregnant, nursing being treated fordepression. That brings up another point, is the concern for some drug inter-actionbetween the kava kava and anti-depressants such as Elivil? I didn't want to scare anyoneaway from this product but rather alert those of you who may have a problem with it.
Commenti had just been crying out of frustration and pain. if i had been healthy i would begraduating from college next week, and seeing all my close friends move on makes me soangry that this disease cripples us. then i logged on to this website and saw the support we give one another. thank you SOMUCH to the women who talk about their success stories. it makes me feel that i can bepatient a little longer. Christina-- i hope your surgery goes really smoothly. i will be thinking of you inthese next few days. tomorrow i am seeing the allergist who will be de-sensitizing me for yeast. i will letyou know what he has to say and what results he expects.
CommentI am so very glad that you are improving. I think that you make a great point withregard to the low-oxalate-yeast connection. I definitely think that the two are somehowintertwined. Also, I just wanted to point out that Frank made an extremely important pointabout kava kava being a high oxalate supplement. Although I am not sure, I think that StJohn's Wort follows along the same path, high too. Along with many vitamins. And if youare taking the two at the same time, I don't want to see you have a relapse. You may wantto check those out. I too have started the yeast free diet. I love dairy and haveeliminated it for a few weeks to see what happens (along with sugar and small amounts offruit b/c of course they are high in sugar). I think this may help as well. Hopefully Iwill see further results. well wishes, laurel
CommentI am leaving this morning on my trip to Wisconsin for my surgery. I am sooooo nervous!!I'm afraid the long car ride will be quite the chore this time around. I just hopeeverything goes smoothly. I will be in Wisconsin for a week. When I get back and I am well enough to do things, Iwill be sure to let everyone know how it goes. Thank you D, And thanks everyone for your wonderful support! Christina
CommentCristina, once again, goodluck with the surgery. You'll be in my thoughts. You saidyou're going to Wisconsin, where are you now and how long does it take for you to getthere? I'll be checking the postings everyday to expect to hear from you. You be sure tokeep us all informed okay. I don't know you, but I love you and hope yours in successfulone. Take care and goodluck girl. Have a safe trip!
CommentCan someone please explain to me what Fribromylgia is? I may have it but I don't knowmuch about it. I go to the Dr in 1 week. I may need to have him check me out for that aswell as an Atypical yeast infection. Thanks!
CommentI have just been diagonised with ls, and am so confused about it. Is there any hope ofbeing normal again.
CommentJanice, what is LS? Please tell me and what are the symptoms?
CommentHello Everyone! Laurel, I know you mentioned that ice may not be a good solution to theburning. I guess I can't understand the concept of applying heat to an area that isalready burning. Do you just sit on the heating pad? I have really had a bad week, and I'mbecoming very depressed. Yesterday was my last day of taking Elavil. I see no change goodor bad yet. Although I did have very bad burning last week. I have given up just about allthe "goodies" that are bad for me, and I am only drinking water. I just don'tknow what else to do. This is really putting my marriage in turmoil. My husband really ishaving a hard time with this. He is very angry @ my doctor because he thinks that they aregiving me the run around. He just doesn't understand this problem. I hate to see the painin his eyes when I cry. This disease is terrible! Lynn, I hope that you are doing okay. I felt pretty good @ church yesterday, butafterwards, I felt awful. I'm still doing what you said and using the vanicream.Hopefully, something will help me soon.
CommentLS is Lichen Sclerosus. If you want to learn more about LS and other Vulvar Healthissues go to www.vulvarhealth.org There is also information on the Vulvar Foundation site.
CommentFrank and Laurel - thanks very much for your helpful notes (and your concern) re KavaKava and St Johns Wort. It does seem that there are as many reasons for vulvodynia asthere are sufferers - and probably as many cures! The low oxalate diet did get rid of some of my soreness but not the nerve type painwhich I also have. However, when I came off the low oxalate diet over a year ago thesoreness didn't get any worse. I think what helped me more was cotton sanitary pads andnon bleached loo roll, no soap etc - that sort of thing. However the anti candida diet has been a revelation. I suspect candida is at least partif not all of my problem because a/my vulvodynia started after thrush and b/I have hadvirtually all the way through this disease a rash on the inside of my legs which I am toldis connected to thrush/yeast. In the six weeks since I have been on the anti candida dietit has almost gone only raring up slightly at the weekend when we had one of those rarethings in England - a hot, sunny day! The diet is boring to the extreme though as anyone following it will know - no sugar,yeast, alcohol, anything fermented etc. I also cut out fruit and milk because of theirnatural sugars. I have home made soda bread which uses yoghurt but I am not having aproblem with that. I am sure this regime is a big part of my daily improvement. I will carry on taking theSt Johns Wort and Kava Kava because the low oxalate regime didn't help me a huge amount. Idon't mind being a guinea pig for them - obviously if they help I will let folks know butrest assured I shall bin them at the first sign of soreness but at the moment (three daysin) the only thing that I am seeing is improvement. I am not at all cocky about this -bemused, more like! Incidentally, I saw a gynaecologist this morning: he was as much use as an ashtray on amotorbike - he told me to have a few glasses of wine if I want to have sex! Shame hedidn't prescribe any, but I couldn't drink it anyway on the anti candida diet! In the last two months I have also suffered a very irritated bladder as a lot of womenposting on this site have. Again that disappeared with the anti candida diet andinterestingly has only reappeared slightly today because I had a cup of black teayesterday. It wasn't the decaffeinated kind which I have occasionally (I usually drinkgreen tea now) and I am sure that is the culprit.
CommentI have been suffering from this vaginal itch for 5 years now and have been to mygynecologist many times ....He has not been able to find anything wrong, given me allsorts of treatment, like Xylocaine Gel, Premarin Cream. I've tried stuff over the counterand nothing seems to work. Has anyone else experienced that horrible itch. Please let meknow. I'd be very grateful...Gerri
CommentHi all, Its been about two years since I've contributed to the guestbook but here I amagain, because after two years without any symptoms or pain, I've relapsed and am feelingall the pain & fustration you all are feeling. Like I said, I had vestibulities abouttwo years ago, and then after 2 long months and many Dr. visits, it seemed to go away onits own, boy was I relieved. And I guess, I can thank God, that I was symptomless for twowhole years (no burning, no, itching, no pain after intercourse) but I recently started tofeel pain again after being diagnosed with a yeast infection. Got that treated, but sincethen, I've started to feel awful again. I can barely function & its sooo frustrating.Somehow I'm starting to think that maybe vestibulitis is linked to yeast infections,because prior to this I had no pain whatsoever. Aside from sitting in baths, does anyoneelse have suggestions about dealing with the burning sensation & the terrible itchthat comes along with this horrible disease? I would appreciate any input. Thank you allfor listening and GOD BLESS ALL OF YOU, HANG IN THERE, WE WILL FIND A CURE! MV
CommentLYNN: Here are a couple of websites with a good description of fibromyalgia: http://www.pendulum.org/related/FMS/fm-pain.htm http://www.myosymmetriesedmonton.com/fibromyalgia.htm I've had vulvodynia for years now, but I believe that I'm heading into fibromyalgia nowas well. Actually, there is a belief among some people that vulvodynia IS A PART OFfibromyalgia. GERRI: I had the worst vaginal itching in the beginning of this nightmare. Mygynecologists (I tried a few!) kept trying to treat me for a yeast infection: what theyDIDN'T do was to determine what KIND of yeast it was! (Turns out I had an aypical yeast.)Has your doctor tested you only for candida? He should also be testing you for atypicalyeasts. Once I was on the proper medicine, I was MUCH IMPROVED!
CommentTry the heat. It really does work. And does not make the burning worse. I know what youmean when you just want the ice, but this works so much. I used to sit on the pad behindmy desk at work during the times I had to sit. It helps tremendously. I think that youcould be suffering from yeast. Why don't you post some of the things that you eat on adaily basis? Get rid of sugar and dairy and pastas and breads for 2 weeks. Guarantee youfeel a hell of a lot better. Eat meats, poultry, and fish plain. Eat cauliflower andpeeled cucumbers. Drink water. No fruits or fruit juices. I think you will seeimprovement. It's the diet that is the hardest challenge. The bookstores have great yeastcookbooks, just keep in mind the oxalate content! Post and let me know. I think yourhusband will be surprised at the result. Keep using the vanicream and the other methods.Let me know. Oh, and try the heat. I guarantee it will help. talk soon,laurel
CommentFibromyalgia is so hard to explain. Causes aches and pains and fatigue of the body,usually invisible to the eye. You will feel achy, tired, irritable, and the symptoms are amile long. I think that you should read up on it. Some books offer a test to see what youscore. It may help you. I had just learned to live with it. I was just so used to how Ifelt that I had no idea I had it. I was so concerned with the vulvar pain and from that Ibuilt up a major threshold for pain, so all the other aches went virtually undetected.But, the book is very informative, and at least you can rule it out. Hope thishelps-Laurel
CommentOkay, your turn! Your vulvar pain is the direct result of the yeast. You have to followthe anti-yeast diet, perhaps along with Diflucan or Nystatin. It may take up to 3 months,but I think you will be able to reverse it. Have you read the Yeast Connection and theWoman? I would highly recommend it for you and the others as well. it will give you aguideline to recovery. Best wishes, Laurel For Lynn: Forgot to suggest a book on theFibromyalgia by Dr St Amand. He is part of the Vulvar Pain Foundation now and is fabulous.he treats with Guaifenesin (expectorant in high doses). It works for most, but there areseveral different ways. The Guai has not helped me, but I have the damn thyroid, so thatwas really the problem. Some docs like to use the Elavil, but that to me is pointless.Tried that too. Anyway, I think that book is one of the best that I have read! laurel
CommentHeh, heh, here's my contribution to this very lengthy guestbook. Time for a seventeenthbook, methinks! :-) Anyways, I have been following the posts here for a long time. I've been a lurkerbecause there hasn't been much to contribute regarding any significant improvement in mycondition. All the things that I found have helped since Dec. are still bringing me aconsiderable amount of comfort--wonder what would happen if I quit cold turkey? I'm toochicken to find out! The no-sugar/low carb diet has been helpful, I also have tried toboost my immune system with high quality multi-vitamins and have started taking Omega-6supplements as well. The most important change in my daily routine has been theconsumption of WATER. I don't drink anything else. No soda, juice, tea, coffee, soy milk,nothing! I do have a small amount of organic skim milk on my raw oatmeal/ground flax seedin the morning. Now I'm thinking of eliminating all wheat and dairy as soon as I begin mydiflucan (the prescription was written up on Thurs. by a dermatologist I have been seeingfor a month). He took a biopsy sample (God, did that upset me because I wasn't emotionallyprepared, but apparently it eliminated the diagnoses of a number of diseases. I suspectedthe results would be exactly what they turned out to be--chronic imflamation--BIGSURPRISE--NOT!) Oh well, didn't mean to be negative there, but it can be so frustrating tonot be any closer to a cure. But here's the deal--my dermatologist is at least willing totry the diflucan. My symptoms only appeared after a course of antibiotics (keflex) for aminor bladder infection, and have worsened with the two other courses of antibiotics Itook last year. So I suspect yeast, only this is a yeast that doesn't appear on the commoncultures they take in the doctor's office. I will keep everyone posted on my progress. Iam going to try Diflucan 100mg. daily, and stick to the strict anti-candida diet.
CommentIt is such a wonderful feeling to know I'm not the only one out there that is feelingthis ongoing pain. My personal life is in shambles because of it. I just found out in thelast few days I have this. I am trying to find as much information as I can at this time.Thank You so much.
CommentLadies After having almost a two year sabbatical from the burning and itching, I have had asetback and am very disappointed. I had to be treated for a throat infection withpenicillin and BINGO, the pain is back. I never had a problem inside, only outside with araw, burning sensation that does not go away. Any suggestions as to what I can use to helpthis out. Last time I think I "cured" myself with the calcium citrate and plainold petroleum jelly, but it does not seem to be working this time. I am from Canada andcannot get Ox-absorb here and have not been able to find over the river. Also, I have twodoctors who do not really believe in this condition so getting something like Estrace isnot an option right now. Any suggestions would be most helpful to me. Thanks.
CommentOops, forgot to add a few more things.... First of all, I would like to disagree with the poster who felt this current guestbookwas overwelmingly negative. On the contrary, I am totally impressed with the number ofpro-active, intelligent, thoughtful people who have been contributing. The support you'veshown to eachother, communicating on first names basis', the theories that have beendiscussed in an open manner--these are all indications of a POSITIVE forum, IMO. Secondly, I forgot to mention I try to have at least half a cup of UNSWEETENEDcranberry juice a day, to prevent e-coli infections in my bladder. I don't want to comedown with another one like I did last October--by far the most painful one I have everexperienced. I HATE BLADDER PAIN!!! Now I experience the same sensation off and on (justhad that experience last week when my period was clearing up--wonder if it could be likedto the fact that I indulged in two margaritas and a few Jello-shots at a party the Sat.before--just when you want a little fun, what happens? Same with sex--WHY DO WE HAVE TOGIVE UP ALL THE PLEASURES IN LIFE? Thank goodness hugs don't cause us more pain! I also wanted to share a little story my dermatologist told me last Thurs. regardingyeast. He is a very approachable man and I do not hold it against him that he performedthat biopsy--he seemed sympathetic at least, and wanted to be certain he wasn'tprescribing any unecessary medications. Anyways, he had a patient who had hives and had noexplanation for them. They decided to try Diflucan for awhile and lo and behold the hivesdisappeared. The patient assumed that because the Diflucan worked she must be sufferingfrom a yeast infection so she decided to visit an infectious disease specialist. She wastold flatly that the entire notion was ridiculous so she stopped taking the Diflucan(HELLO, it worked...why question it?) Anyways, the hives returned, so it was back to theDiflucan. THIS SYSTEMIC YEAST theory makes a lot of sense, yet there doesn't seem to beenough documented studies to prove it to all these skeptical doctors. WE NEED MOE RESEARCHINTO THE WHOLE HORMONE/YEAST/MONTHLY CYCLE PHENOMENON.
CommentStephanie: In my opinion, the antibiotic caused a yeast infection. They often do. Getyourself some oral medication from the doctor immediately and hopefully your pain anditching will subside.
CommentDo not despair! Have you tried to order the Ox-Absorb through vitamins.com? I don't seewhy they can't deliver to Canada. Also, if you have trouble getting the Estrace cream, tryVanicream. The ingredients are very similar. When I could not find it in my pharmacy, Iasked the pharmacist (Osco Drug) who had never heard of it. She looked it up for me andordered me a large jar along with 2 bars of soap. It was there by 2 o'clock the nextafternoon! And no prescription needed. I have been using for a few days now thanks to theladies and Frank. Otherwise I would have never known of it's existence. I think that evenwhen we consider ourselves cured or greatly improved, the yeast is always there justwaiting to multiply from the antibiotics and other meds. Each time we get an infection, Ifeel that the yeast builds up even more. It is becoming immune to all these medications.You are going to have restrict what you are eating for a while, but I think that you havethe ability to overcome this. I wish the best. As for Sandee, I have a question for you.Do you think that the cranberry juice could be aggravating you? it is very high inoxalate! And may be keeping you from reaching your final goal. Just a thought!regards-laurel
CommentWhen my vulvodynia started (almost 3 yrs ago), I underwent various painful tests tryingto find out what I had and what could be done. Certainly even having a pelvic exam isexcrutiating when even the act of walking or sitting is terribly painful. So, yep, thosetests were always a joy. But then within one week, I had two very painful tests. One was abiopsy of the vulvar tissue. Yes, they give you Lidocaine, but hey, I still felt it (yeah,you better believe it). A few days later, I had a cystoscopy (a test done by a urologistwhere they look inside your bladder w/a scope). Yes, I was glad that the urologist found ahealthy bladder, but I hurt so badly that all I wanted to do was go home and get into awarm tub. I had the cystoscopy on Friday and was sick (nauseous and vomiting) most of the weekendfrom the pain medications they prescribed (which, by the way, did very little for thepain!!) When cruising the web sites regarding vulvar pain, I saw mentioned Borough'ssolution to relieve pain. I had no idea what it was, but I called my gyn and asked what hethought about me trying this for my pain (which was in the whole vulvar area). Heencouraged me that it might help. So, I went to my pharmacist and asked for some - you don't need a prescription for it.I took it home and followed the instructions on the package. I was unimpressed w/theresults which instruct you to mix solution w/water, soak a cloth w/the solution, and applyto the area. So the next time, I instead mixed the solution w/water (as stated on thepackage), but this time laid back in the bathtub and slowly poured the solution over thearea. Aaaah! Relief! This stuff is completely harmless, an oldtime remedy used for insect bites, rashes,irritated skin to provide temporary relief. I've found this stuff is the BEST fortemporary relief. And what I really like is that it's safe! It's not a drug. By the way,that week after the cystoscopy and biopsy, I quit taking the pain meds and used Borough'sinstead. It worked MANY times better!!!!!!!!!!!!! The actual name of the stuff is Domeboro. If your pharmacy doesn't have it, they canorder it. I get mine at KMart or Eckerds. MV & Steph, please try this and let me know if it helps. God bless and the best to you --Callie
CommentLAUREL: What are your symptoms with fibromyalgia? Do you get nerve pain, like tingling,or even sciatic pain?
CommentThanks Callie for the suggestion, I do have a question, is it safe to use duringpregnancy, you see I'm 3 1/2 months pregnant. Let me know? Thanks!
CommentTo anyone who can help! Sorry for so many questions, but was wondering exactly how yoursignificant other gets treated for yeast, I believe my fiance and I keep passing it toeach other, & thats why I get so many yeast infections. Does anyone know if there isanything over the counter or perhaps a prescription that men can use to clear yeast? Againsorry for so many questions, I'm desperate for relief! MV
CommentObviously, I am not a pharmacist or doctor, but I would say that Borough's solution isprobably safe for a pregnant woman. But ask the pharmacist or your doctor for sure. I was reading the warnings on the package after reading your post, and they are minimal- for external use, don't cover the area on the body w/plastic (you wouldn't do thatanyway, of course), if condition worsens or symptoms persist for more than 7 days, calldoctor, and do not swallow the stuff. Pretty basic warnings for about any topicalmedicine. Again, ask your pharmacist for sure about the pregnancy thing. Hope this helps. My best to you and God bless. --Callie
CommentI have so many aches and pains that it is hard to list them all. And the thing is thatnone are significant pain, just discomfort, except that I do have constant low back pain.The only time I had sciatica was when I was pregnant. I do get tingling in the extremitiesand that is definitely one symptom. Dr St Amand's book is excellent. After reading it youwill most definitely know if you at least that. I think that you will benefit from it.Talk soon-laurel
CommentYes, it is possible that you and your partner are passing the yeast back and forth. Ithink that your husband would have to watch his diet as well. I kow that you can betreated diflucan or nystatin (which many have problems with), but those are prescriptiononly. You probably want to ask your GYN. You can also ask to be tested for atypical yeast.I would suggest that you both be tested. There are a number of candida and anti-yeastcookbooks and they are fabulous if you want to try those-laurel
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CommentHi Laurel! I read a little while ago that berries are a no-no for the low oxalate diet. I reallydon't know what to do at this point! I can't imagine having the kind of pain again that Ihad back in Oct. with that last e-coli infection. I woke up crying several times in thenight. The most disappointing thing about my week of antibiotic treatment was this--I wentin on the Friday to have my urine tested and it was 'clear'. The next day I went outsideto put up some Hallowe'en decorations and I started to feel like I was getting anotherinfection. I was scared to death because the antibiotics seemed to do some strange thingsto my nervous system. The same for the Cipro I took back in June (I took that out ofdesparation because my doctor said they grew e-coli in the vaginal culture they took. Ithought that might be what was causing my vulvar redness and soreness). Up to that point Ididn't feel any pain in my bladder. That appeared after I used the Cipro for a week, andagain after I used the Macrobid for a week. I experienced it again in Dec. after drivingup to Canada (two day 24 hour trip) but I located some acidophillus up there and drank mycranberry juice and it went away in a day. Then I felt it again in March when I was undera lot of stress (also after my period was clearing up). Then I experienced it again lastweek. My bladder still feels a bit sore. I would go to a urologist but I'm not sure ifs/he could help--after all, everytime I get a urine test with these symptoms it reads"clear". I'm relieved it's not e-coli, but what the heck could it be? I'mtempted to try Ox-absorb (the stuff you wrote about and recommend), but my bladder painisn't constant. It comes and goes, thank goodness. I found out today that my insurance won't cover my Diflucan prescription, so I will beusing Nizoral instead. It has more side effects; I will be using it with caution. I willkeep everyone posted. Sandee
CommentI read a book named "Solving the Interstitial Cystitis Puzzle" that I gotfrom www.holisticnurse.com. It was written by an RN and recommended an alkali-formingdiet. I followed the diet, and I feel 100% better. I was wondering if anyone else has hada positive experience after reading this book.
CommentTO LAUREL: I know what you mean about so many aches and pains! Besides the vulvar pain, I havebladder pain, gastrointestinal pain, low backaches, stiffness in the joints, tingling inhands and feet and even on my face sometimes, muscle pain, sciatic pain, and the list goeson! I've just started the guaifenesin, so I hope that helps! Thanks for your response! Deborah
CommentI just had to share, that last night & this morning I woke up with NO PAIN, NOBURNING, NO NOTHING! I even had sex with my hubbie with no pain. NOT THAT I'M COMPLAINING!But this is very confusing to me. My vestibulities doesn't seem to be constant, I justrelapse back & forth. I can't explain it! I guess for now, I will enjoy a pain-freeday! THIS DISEASE THROWS ME FOR A LOOP! HOPE YOU ALL HAVE A GOOD DAY & GOD BLESS
CommentQuestion: Has childbirth worsened the pain for any of you? You see I'm due in Novemberwith my first baby and when I asked my Gyne for a C-Section for fear that such a traumaticexperience would affect my vestibulitis she said "she cannot just give me a C-sectionthat I would have to try to have it vaginally first" I'm sooo scared that labor willworsen my condition. Just wanted to hear from anyone who has gone through the experience.
CommentHi everyone. I am 22, I have been suffering from extreme pain with sex since I firstattemped it when I was 16. Over the years it has only gotten worse, to where now I can'tattempt any sex at all. About a year ago I finally got up the nerve to talk with a doctorabout it, and she thinks I have vulvular vestibulitis. I am not sure if I agree, but shehas done the Q-tip testing that goes with it. Already tried dilators, I hated them, theydidn't help at all, I thought it was very pointless. Then she put me on a genital wartscream called Aldara, that she said could be used for VV also. I had an extreme reaction toit, had to go off it immediately. At this time she also diagnosed me with a yeastinfection. Well, that is cleared up and I still have the excruciating pain with sex. Thiswhole situation is terribly depressing, I have a fiance that I really would like toexpericence a whole relationship with, and like other posts that I've read, I fear toothat in the coming year he will be unsure of staying with someone who can't particpate inthat wonderful part of a couple's life. Currently the doctor wants me to try a specialkind of diet to see if that will help. Personally I really want to try many things atonce, not take this so casually per month, waiting even longer to ever be helped with thisproblem. It's like they understand the problem, but they don't understand the urgency andproblem it might be causing with someone's relationship also. Would love to hear fromothers on this. Laura
CommentTo Callie, Hi girl! I read your post and you had mentioned that you've been using the"Domeboro" solution and that has helped you out a lot. Well that's good for youbut I was going to tell you that a year ago my doctor had recommended that I go get thatand try it. I did and paid $13 for the package and it did nothing for me but burn me more.I used only 1 package of it and there is no way that I could use anymore. It burned me somuch girl I was so mad! I still have 11 packets left but I'll keep them just in case I ormy child may need it for whatever reason in the future. The only thing that has everworked for me is the vanicream. I haven't used that in months (except when I just recentlydiscovered a small tear, then I put a dab on and the tear healed up quickly) I still haveover half a jar left. Anyways, take care
CommentLynn: The Domeboro solution burned me also, and like you I also only used one packet. Ialso tried Tea Tree Oil which others recommended and that burned too. Yesterday I startedto burn and used some Vanicream and it did seem to help. This disorder is so frustrating.I went over a yr. without any burning or pain and was able to enjoy sex again with myhusband, and then late last yr, I started getting intermittent burning again. Sue
CommentDon't worry about the pregnancy, just enjoy it. I dreaded delivery and that was nearly5 years ago. Personally, I felt that the stretching of the area did me good. I am no worsethan before. Also, I applied pure vitamin e oil from the capsules to the area once a dayand the doctors swears that was what kept me from tearing. I needed no episiotomy, but Itore in a tiny area on the outside, and required 2 tiny stitches. Also, I needed no drugs!That is due to my extremely high tolerance for pain from this vulvar pain! You will dojust fine. If you use the vitamin e, use a very small amount, especially at first, as theskin needs to get used to it and will itch for a few days. But it will go away. Congrats!Laurel
CommentIt sounds as if you should request a test for atypical yeast. These things don'tusually show up in lab tests, because you have to be specifically tested for a certainyeast. When you get a burning bladder, like I do, it is probably from there being too muchyeast in the body at that particular time. It probably was what you had eaten a couple ofhours before. I do not get the burning all of the time either and when I do it passesrathere quickly, especially if I relax the area, instead of tightening it which is anatural gut reaction to the pain. Be patient until you go to the bathroom a few times. Itusually goes away after a few hours. Drink water. When you drove to canada, sitting toolong generates yeast growth. They love the warmth and moisture. Don't hold it in if youhave to void. Drink loads of water. Try avoiding fruits for a week. Yeast always worsensaround the time you get your period. You may feel that you may have an infection, but itdisappears once the period does. Douche with a small amount of baking soda if you feel onecoming on, just don't do it too frequently. Have you read up on yeast in the body? I thinkthat is what your problem may be. Really check into it. Hope you feel better-laurel
CommentYour symptoms could be yeast, fibromyalgia, or an underactive thyroid. Remember what myDr sais about fibromyalgia actually being a misdiagnosed thyroid. And all these books I amreading on the yeast say to make sure that you do not have the thyroid. It prevents thebody from fighting it iff and the yeast will never go away. So, be sure to rule everythingout. I am still on the Guai, but have not had luck with it. If you find that it does notwork for you, look into the other theories. I want to see you better soon! Oh, and don'tforget that if you take Guai, you have to eliminate all kinds of products (salicylates) orit won't work at all. Good luck-laure
CommentHello Everybody. Someone else has been signing in as Stephanie also so I added the Cafter mine to let you know who I was. Laurel, isn't your big day coming up soon? I wishyou all the best and especially with your honeymoon. I know you told me to give up alldrinks including fruit juices. What about fruits? Also, you said lay off the pastas,breads and sweets for a little while and I should see a difference. This is sort of like adiet I went on a couple of months ago called the Adkins Diet. It's just so much stuff Ihave to look out for. How do you remember all of this? I'm still not having any reliefwith anything that I am using. I go back to the doctor on next week. I'll keep trying thethings you mentioned. One good thing has happened, I am getting my sex drive back a littleand sex isn't hurting right now. Lynn, I hope that you are okay, and just hang in there. I don't think the Vanicream isdoing anything thus far, but I am going to keep @ it for @ least another month. Have agreat day.
CommentLAUREL: Well, I just checked the internet for "underactive thyroid." Came up with thefollowing site that mentions the underactive thyroid/fibromyalgia connection! I don't think that that is me since two of the symptoms are overweight and low bloodpressure, neither of which describe me. But, I probably should get a blood test, just tosee what comes up! So, tell me about what you do to avoid salicylates. I know about aspirin and aloe vera.I've read that salicylates can be in lotions and in makeup, too. Do you avoid that aswell? If so, where do you find "salicylate free" products? Another problem I'mhaving is finding salicylate free sunscreen. I'm very fair skinned and burn quite easily,so I really can't go without that! Thanks for your help, Laurel! I appreciate it!
CommentTo M.V.: Best of luck with your baby. I hope you get many responses that help put youat ease. I have posted that my wife has a problem with tearing at the six o'clock regionof her vulva, near the episiotomy scars. This was seven years after her last child so I donot think there is a relationship between the two. Lastly I feel any woman who issuffering from these illnesses deserves the option of vaginal or C- section delivery. Thisis still a no cause, no cure problem why would the Doctors force a woman to delivervaginally if she has ongoing pain? Comes down to insurance and money, I'm sure if theDoctor suffered from Vulvodynia and was pregnant there would be a choice!!
CommentThanks for the wishes! Have you gone on your trip yet? I am running around like amaniac tying up all the loose ends. We leave Saturday bright and early. I am sure I willmiss this site for the 9 days that I am gone! No access from the islands! I have been onthe Atkins diet. Didn't work b/c I had the damn thyroid. But, you are right. It is notdissimilar. I think that you should acvid fruits. They are so high in sugar. in the book Iam reading, it mentions that you can have watermelon and some others, but watch theamounts. Then gradually add them in one at a time. See if they are tolerable. The books onyeast tell you what you can and cannot have. There are actually a lot of things that youcan have. I have been doing this diet for almost a week and notice a significantdifference. That is why I think that you will benefit from it. I am glad to see you postwith some good news about you and your husband. Try the anti-candida diet (and low oxalatediet) and let me know what you think. For those who have stubborn yeast, you probably needfluconazole (Diflucan) or Nystatin under a doctor's care. Results within weeks. Thanksagain and I hope for your wellness, laurel
CommentYou will benefit by reading Dr Paul St Amand's "What Your Doctor may Not Tell YouAbout Fibromyalgia." It is an excellent starting point in learning about the illness.I strongly suggest his book. There are thousands of products, even your sunblock, thathave salicylates. And when you read them all, you will be overwhelmed at first, but aftera while you become a pretty good sleuth. Go to www.guaidoc.com it is Dr St Amand'swebsite. The book is posted there. If you scrol down to the bottom, you can click onsalicylate free products and it will give you a long list of thing that you CAN have. Iprinted the list out and take it with me when I go to the drug store for toiletries. Also,even if you believe that you do not have the thyroid, still ask for the tests, t3, t4, andthe most accurate (although you can test negative and still have it) TSH test. I believethey are relatively inexpensive. And you can go from there. Hope this helps. Laurel
CommentHello everybody, I used to have vulvar vestibulitis for all of my sexually active life (i.e. the veryfirst intercourse at the age of 18 was painful and has been ever since (10 years), as wellas vaginal exams or any other kind of manipulation in that area like tampons). I also hadsome burning and irritation during the first days of my period. None of the doctors Iattended found a cause or a cure for this condition. During 1997/98 I subscribed to DrGlazers mailing list which helped me a lot in understanding that I was not the only personon earth with this problem. The reason I am writing this is that I discontinued the pill(which I had been taking since I was 17 years old) 5 months ago and have experiencedsignificant reduction in pain to the point of being able to have painfree intercourseanytime! The burning at the beginning of the period has also gone. The whole vaginaltissue feels a lot more supple and elastic. This might not be the cure-all, but it mightbe a thing to try if you can live with another form of contraception. Best regards, Heike
CommentLaurel, Could you give me the name of the book with the anti-candida diet? We areleaving for our trip on the 24th so I also will miss the site for a week. Take care andHAVE FUN!
CommentDr. Glazer, Thank God for doctors who are helping people back to their health in ahealthy way. Thank you and my daughter (Diane) who contacted you. The Glazer Pelvic MuscleHome Training Package is GREAT. It would have been nice to know this a long time ago.Thanks for your web site. It has stopped the feeling of something has fallen out or hasdropped plus holding my bladder sometimes was a problem for me, but now I have a strongmuscle in such a short time (I think 3 or 4 weeks). It is well worth the money and timefor us.. Thank you Jesus. God Bless Dr. Glazer, family and staff Marilyn P.S. I like beinga Vegetarian (cheese and egg yolk) and eat mostly raw fruits and vegetables and somejuices.
CommentHadn't read the site for a while. MV, please find a different OBGYN. I think you should wait until you are closer to yourdue date to decide whether you want a c-section...see how your vulva feels. BUT, you needto know NOW that your doctor will perform a c-section if you want it. You have a GOODREASON to have a c. Do not spend your time trying to convince your current doctor you areright...go to a doctor that agrees from the get-go that there is reason for you to have ac-section. Vulvodynia is not in your mind, it is a physical reality. I know people thatgot much worse after vaginal birth, people that got better, and people that stayed thesame. It should be up to you what risk you want to take, not your doctor. Jennifer
Commentto LAUREL or anyone else who might be able to help...first off, thank you so much forall of your valuable contributions. i am having trouble finding a phone # to contact dr.solomon's office. i am very interested in learning more about his treatments and becomingpart of the pain research. so, if you would please give me a # to reach him or his officei would greatly appreciate it. thank you so much.
CommentI am not writing from home at the moment. I will look up Dr and Ruth Solomons numberfor you and post it when I get home. The number to the Vulvar Pain Foundation is336-226-0704. I believe that they will gwet you in touch with him, as he is a part of thefoundation. In the meantime, log on to www.vulvarpainfoundation.org and it will give youlots of good information. However, I did not see his number. I will post later and I amglas that you found this site. It gives a lot of support! laurel
CommentFor M.V.: I have to agree with Jennifer. Don't think because I'm a guy I'm clueless.I've been through three deliveries with my wife and all of the Gyns were different. Twomade the episitomy cut straight down, one made what is called the golf club incision itcomes down and then off to the side. Rgardless of all that believe me I understand andrespect the bond you have with your OBGYN. Don't let that cloud the issues, you have amedical condition that could be changed by vaginal delivery I believe the placenta isdischaged vaginally even with a C section. The choice should be given to you, it shouldnot be too late to get a second opinion. Once again I am not saying this to put fear inyour mind but rather to have you stand up for your rights. That is your body you deservethe compasion and understanding of your Doctor. Fight for it then make up your mind. BEstof luck to you and your baby....
CommentHey Stephanie C. I'm not doing too well right now. I've been in pain off and on sinceyesterday. I'm upset because I'm tired of feeling good for days then suddenly hurt again.It's no fun at all! This disorder is so unbeleivable! I can't understand how could thisonly exist in some of us women and not all. I mean that's good that all women don't sufferlike us, but why must we suffer period! I drunk rasberry ice tea yesterday and since then,that's when I began to hurt! I love that tea! I have been staying away from it for monthsnow and when I thirsted for it, now I have to be punished! I've ALWAYS ate healthy foods!I was active and everything. But I can't eat what I want. It's like the healthiest foodsis what causes pain! It doesn't make any sense! You asked how I was doing and so to tellyou the truth, I'm extremely angry and frustrated! I want this pain to go away so I canstart feeling better again! The pain always hit me mostly in my vestibular glands. Butthose glands were removed so I don't have any pain there anymore. It's usually at the topof my vulva where I'll hurt when I eat/drink the wrong food. How long has it been sinceyou started using the vanicream? If it's been a month and you are still hurting, then Irecomend for you to stop using it. If you have not seen any improvement in a month then Itjust may not be working for you. It'l only work for the external part of the vulva but notif you have vestibulitis( which is the pain internally in the vestibular glands). I'm gladthat you and your husband are getting your grooves back. Have fun on your trip. Bye now!Laurel- You should be a nurse or doctor cause you know all your stuff! You've done yourresearch very well! You have fun on your trip as well
CommentI have a question for all of you. If you are in pain and your partner comes and arouseyou, does that take your pain away? Does the arousal take the pain away? And what if youhave sex after you get aroused? Does the sex take the pain away as well or does theintercourse increase the pain? Me and my husband have not had intercourse in 2 years. Butwhen I hurt and he begins to arouse me, the hurting goes away. I don't know what's itgoing to feel like when we have sex again. I assume it won't hurt but who knows? I like toget everyone's input please. Thank you!
CommentHi Sue! Hi Frank, I haven't spoken to you in a while.
CommentThere are 3 books that I have. I mentioned William Crook's The Yeast Connection and theWoman. Then I bought The Candida Control Cookbook by Gail Burton. And I thought I wasbuying another cookbook because it was in that section. Turns out to be my favorite one.It is called Complete Candida Yeast Guidebook, written by Jeanne Marie Martin. It haseverything, including recipes. But just be aware that some of these things are high inoxalate, as it is not just for us vulvodynia sufferers! I am bringing them on the trip tokeep me occupied on the planes. I hope that everything goes well for you and enjoy yourexcursion. Come Monday, my last name will not be West anymore, but DeJesus! A nice Spanishname! I will miss you all, and I am sure that I will have much catching up to do when Ireturn. Flight leaves bright and early tomorrow. For Lynn, yes you are hurting from thatraspberry tea! The only teas I have heard of that don't cause significant pain are theBigelow Teas. But I have been too chicken to try them. I will probably check in with youlater, as I have a ton of last minute stuff to do today. By the way, I have noticed that Ican be aroused (but try to keep it in check for fear of setback) and still be having thepain or minimal pain. But arousal is never a problem for me. The arousal comes from theclitoral area, away from the vulva. I find that if I am feeling good, I have no troublewhatsoever, unless sex has gone on too long and a lot of it is the friction. Most of thepain for me comes the next day. I fear that and Eddie is forever telling me to stopthinkng about it, but really he does not understand how bad I can get, because mytolerance is so high, I act the same if I am flaring up, having minimal pain, or am fine.I am so used to it. It has been a while since we have had sex. A lot is due to my fear ofthe next couple of days. But I will be on my honeymoon next week and this new anti yeastdiet has helped tremendously. I wanted to wait, so wish me luck! The best to you all andkeep up the spirits! laurel
CommentLynn, I too have had some pretty rough days lately. It seems like when I the Vanicreamon, it does help a little, but after sitting so long the burning just comes back. I amhappy that I have not been having any pain. I know so many of you have pain, and I feelreally bad that all I talk about is my burning. IT REALLY BURNS THOUGH! I'm completely offthe Elavil (it wasn't working anyway). I have been using the Vanicream everyday for 3weeks now. I will continue to use it for a little while longer because according to myhusband I am no longer that red around the vulva now. I just don't know what else to do.My whole life has changed. I used to be so happy and jolly, but now that is no longer. Imight look into seeing another doctor, but I know I will have to travel because of where Ilive. There HAS got to be something that will stop this burning or @ least help ease it. Idrank some raspberry tea last week myself. That could be where my burning is coming from.I guess all I can drink is water. Well, I hope eveything goes better for you. I just hopeto be better by my trip. I'll post back before then. Take Care!
CommentHey Stephanie C, do you have Vestibulitis? Because you do and that's what is causingyour pain, I want to know have you ever considered getting the surgery? No more Rasberryice tea for me for a while! It's the summer time, we all should be out feeling goodeveryday enjoying ourselves and the nice wheather. I've recieved my cookbook on Tuesday. Ihaven't use it yet because I need to go grocery shopping and I'll be doing that thisweekend. Oh by the way, I'm feeling Great this morning. I hope I can stay that way for therest of the day at least. Later!
CommentHey Stephanie C, do you have Vestibulitis? Because you do and that's what is causingyour pain, I want to know have you ever considered getting the surgery? No more Rasberryice tea for me for a while! It's the summer time, we all should be out feeling goodeveryday enjoying ourselves and the nice wheather. I've recieved my cookbook on Tuesday. Ihaven't use it yet because I need to go grocery shopping and I'll be doing that thisweekend. Oh by the way, I'm feeling Great this morning. I hope I can stay that way for therest of the day at least. Later!
CommentHave a great honeymoon and thanks for all the advice...God bless your union! MV
CommentI appreciate any advice given, I am going to see a new doctor on Monday, I will seewhat he says about giving me a c-section. And no Frank I don't think your clueless becauseyou're a male, I actually think you are great just for being concerned enough to be here.Hope alot of men out there learn to understand this disease. Thanks! MV
CommentI too only have the CONSTANT BURNING, NO PAIN! But the burning is enough to drive mecrazy. I don't however have any problems with painful sex, thank god, the pain (burning)usually comes afterward. Thats when I flare up. Who knows! MV
CommentWell.....I have been looking over the many different stories that are in here and mineor no different. My wife,for 8 years has always had yeast infections and that was allstopped by a yeast shot that she recieves once a month.But since then she was diagnosedwith the VV desease and we have not had intercoarse in about 11 weeks..We are both 30years old and love each other very much..I'm just scared that before they ever find asolution to the problem that we are going to become strangers to one another.She is nowseing a specialist in Chapel Hill NC but so far nothing has changed.Any one with any information at all would be appreciated greatly.. thanks
CommentLynn, I have never been told by my doctor that I have Vestibulitis. I have always hadsome pain with intercourse, but not that bad. I have told my doctor that lots of times,and I still don't know why she put me on the Elavil. I'm all confused. Do you have burningwith Vestibulitis or just pain? When I walk or run, it's fine. It's just when I sit downthat kills me. I guess burning is pain too. MV, Has anything worked for you with the burning? I'm so glad to be enjoying sex again.That Elavil or something had me not wanting it @ ALL! I sit a lot @ my job, and that makesmy burning flare up. Thanks for any comments. We're all in this TOGETHER!
CommentI am 34 and was diagnosed with interstial cystitis about 12 years ago and a few yearslater developed vulvodynia. My symptoms are mainly burning and itching around the vagina,the pubic area and anally. Elavil and all the usual anti-depressant medications have nothelped me. A small dose of Rivotril did eleviate some of the symptoms for a time. To Jean:You are one of the first people I have heard say they have the symptoms in the pubic area,and I too, have relied on Emla as a day saver. I am now pregnant and find the symptoms aregetting worse, and pain that I didn't usually have is suddenly prevalent. I am told thatthere is nothing dangerous about the Emla cream, but of course there is no documentedinformation about any effects on frequest use. LIke any mother to be, I am concerned abouttaking anything, but really fear I will not make it through without some help. I amlooking into the possiblity of starting biofeedback now, but do not know if it will bepossible. Is there anyone out there who suffered while pregnant, and do you have anyadvice? BY the way, I live in Montreal, Canada. Anyone else out there from around here?
CommentI am 34 and was diagnosed with interstial cystitis about 12 years ago and a few yearslater developed vulvodynia. My symptoms are mainly burning and itching around the vagina,the pubic area and anally. Elavil and all the usual anti-depressant medications have nothelped me. A small dose of Rivotril did eleviate some of the symptoms for a time. To Jean:You are one of the first people I have heard say they have the symptoms in the pubic area,and I too, have relied on Emla as a day saver. I am now pregnant and find the symptoms aregetting worse, and pain that I didn't usually have is suddenly prevalent. I am told thatthere is nothing dangerous about the Emla cream, but of course there is no documentedinformation about any effects on frequest use. LIke any mother to be, I am concerned abouttaking anything, but really fear I will not make it through without some help. I amlooking into the possiblity of starting biofeedback now, but do not know if it will bepossible. Is there anyone out there who suffered while pregnant, and do you have anyadvice? BY the way, I live in Montreal, Canada. Anyone else out there from around here?
Commentlaurel: hi it's me again.sorry to bug you but when i call the vpf all i get is amachine telling me to mail any questions to them. if you find the # for dr. solomon'splease let me know. thanks again!
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CommentWell, that was cute; I accidentally hit the submit button before I got anything typed. Okay, first I'm so sorry that the Burow's solution didn't work for some of you and evencaused additional pain! It's so strange; what works for one doesn't for another! Also, I got to thinking about this. I use about a cup and a half of water for eachtablet. I'm probably using it more diluted than the box suggests. And then here's theother thing: Maybe it's a combination of warm water being poured slowly over the area andthe Burow's. I pour it slowly w/a measuring cup. Well, if nothing else, try this (THIS Iknow shouldn't hurt!!) Try pouring a lukewarm cup of water over the area slowly and see ifthat helps some. Again, I'm sorry if I caused anyone undue pain w/my advice. It was given out of a heartof concern. The best to you all and God bless.
CommentI've tried everything under the sun for the burning to no avail....luckily, I'm one whoonly suffers ocassionally from flare-ups....before a week ago (which by the way was when Iwas diagnosed with a Urinary Tract Infection & Yeast Infection), I was NOT BURNING ATALL FOR ABOUT 2 YEARS. What I usually do when I do burn is just use ice cubes to keep thearea refreshed and when working I sit on a donut so that I don't put pressure to the area,unfortunately this is only temporary relief. I'm lucky that usually within a week or so,the burning goes away on its own, and I'll be okay until the next flare-up. Sorry I wasn'table to help much! Take care! MV
CommentMV, I also sit on a donut during the day. Is yours cushioned or inflated? I usually cansit down for about 3 hours before it starts to burn, but then HERE IT COMES AGAIN. I getup and walk around for a little while, and I feel better. By the time I get home theafternoon I'm burning so bad that I just get in the bathtub and lay down for the rest ofthe night. The weekends are great. Maybe because I am up and around a lot. Well, good luckto you, and if I have any luck I will let you know. Have a great weekend everybody!
CommentGREG: Has your wife ever been tested for ATYPICAL yeast? If not, she should! That was myproblem and it went undiagnosed by my gynecologists for a couple of years. I sufferedneedlessly because neither of them had the sense to think of that. (Isn't this SUPPOSED tobe their specialty???) Hope this helps.
CommentHere is an address for Dr Solomons and a fax number. They ask that you fax instead ofcall, and he is very good about response. The address is PO Box 460427, Glendale, CO80246-0427. The fax is 303-388-7799. Good luck, I have met him and he has called mepersonally, and he is a wonderful human being, as is his wife Ruth. Laurel
Commenthello. did anyone else experience onset of v.v. with return of first menstrual cycleafter being pregnant?? since that time, about 1 1/2 years ago, i continue to experience flare-ups just before,during and after my period. of course, also with the wearing of underwear and, mostrecently, after eating too many almonds -- bad, bad nuts .... take care, all, mame
CommentTo Deborah.....well.....is ATYPICAL yeast the same thing as yeast infection? My wifehas had them for years and years but about 2 years ago found out that she was alergic toyeast,, so now she gets a shot in the arm once a month to solve that problem...Now we justhave to worry about the VV desease and I'm not sure if it will ever be solved...She hasbeed through so much and we are running out of answers
CommentTo Stephanie C- I don't even know the difference between pain and burning. It's feelsthe same to me. But I don't hurt externally on the vulva. I'll hurt internally in theright area underneathe the clitoris. That's where I'll hurt when I've eating/drinkingsomething bad. Please anyone answer this question, Is there a cure for an ATYPICAL YEAST INFECTION?What if I do have that, is there any medication that will cure me? Will I be able to eatwhatever I want to eat? I go to the doctor on Monday and I want to ask to be tested forthat. Please let me know anything you guys. Thanks!
CommentTo Greg: I hope you get some good advice from the ladies here. I check out the sitebecause my wife thinks nothing can be done and this is a waste of time, I don't agree.Eleven weeks without sex is a long time. There are other ways to have sex and be intimate,unless you wife is in extreme pain. Sex is a big part of marriage and I have someunderstanding of what you are feeling. Try to avoid making this HER problem, I think ofhow I would feel if the shoe was on the other foot. I certainly would not want my wifebuggin me about my shortcomings. I'm sure you are a nice guy, you are trying to get helpfor both of you. Just be prepared that things may not get better for awhile and you bothmay have to accept this thing. I wish I could be more helpful and not seem negative thatis not my intention. If you can ,describe her symptoms, they vary from woman to woman.Pain, burning, itching, tearing, with or without sex. The more information we have thebetter advice you will get. Best of luck and please stay patient. Frank
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CommentCalie and others have been saying "God bless you all". Well I wish that youall could just leave his name out of this guestbook! If god blessed us, none of us woulddeal with these terrible conditions in the first place! This is not a blessing, It's acurse! It's time we all realize that! No one has to get upset at me for this post. I'msaying what I have to say just like you all are. So if you expect for me to be okay withyou saying "God bless you". Then you'd better be okay with me saying that thisisn't a blessing, it's a curse! We are all women who deserves to have normal sex livesjust like most women do. But for some reason, we were chosen to be punished.
CommentCalie and others have been saying "God bless you all". Well I wish that youall could just leave his name out of this guestbook! If god blessed us, none of us woulddeal with these terrible conditions in the first place! This is not a blessing, It's acurse! It's time we all realize that! No one has to get upset at me for this post. I'msaying what I have to say just like you all are. So if you expect for me to be okay withyou saying "God bless you". Then you'd better be okay with me saying that thisisn't a blessing, it's a curse! We are all women who deserves to have normal sex livesjust like most women do. But for some reason, we were chosen to be punished.
CommentI hope I got this right on the Atypical yeast question, too quite a bit of research.Unlike typical yeast , atypical does not respond to the usual treatments. Prolongedtreatment with the wrong meds can lead to resistant strains. Botom line was get a properdiagnosis as to what strain of yeast so suffer with and medicate accordingly. That was tothe best of my memory what was said I welcome any correction. P.S. When I was firstmarried my wife got a yeast infection, her Gyn prescribed Monostat. I read inserts and Iread that jthe yeast is supposed to be tested to see what strain it is. When I questionedthis the Gyn immediately tried to change the subject and insinuated I was covering up someSTD. Love them Docs!! Bottom line find out what strain of yeast you suffer from and treatit properly. Good luck all......
CommentCalie and others have been saying "God bless you all". Well I wish that youall could just leave his name out of this guestbook! If god blessed us, none of us woulddeal with these terrible conditions in the first place! This is not a blessing, It's acurse! It's time we all realize that! No one has to get upset at me for this post. I'msaying what I have to say just like you all are. So if you expect for me to be okay withyou saying "God bless you". Then you'd better be okay with me saying that thisisn't a blessing, it's a curse! We are all women who deserves to have normal sex livesjust like most women do. But for some reason, we were chosen to be punished.
CommentAre any of you able to have intercourse anally? Or is anal a problem for you all?
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CommentI don't know if the last post suggesting anal intercourse was serious or not but Ithink it is a bad idea. Most couples might experiment with this form of sex but I think itis especially dangerous for women with these conditions. The risk of infection,transmission of bacteria and inflaming something else don't seem worth the risk. There areother less invasive forms of lovemaking. I'm sorry for all the posts , looks like I postalot. Lastly we should be thinking of ways to avoid unnecessary bacteria, germs and toxinsbeing passed back and forth. Guys keep your mouths clean and gums healthy, clean yourhands and under your nails. Practice good hygene , thankyou.
CommentI'm not sure how to use this site, and I don't have too much time to spare at themoment. I'm going to try to cut and paste in a question I left on another message board,if this works. I'm doing research for a friend who has IC. Can someone send answers, ifany, to may e-mail, or must I check this site periodically? See message attached below: General Discussion - What helps Previous | Next From: AIRONEVERDE 10:03 pm To: ALL (1of 1) 14.1 I do not have interstitial cystitis, fortunately. However, I feel like I must be acarrier, not that there really is such a thing. Two of my best friends whom I've known for38 and 33 years have it, one of them under control, the other very bad. And now arelatively new friend, an elderly (75) woman in my town whom I care about, has it, too;she has had it for 4 years and thinks that radiation treatment for cancer may have somehowtriggered it. Since she doesn't use a computer yet, I have been doing lots of internetresearch for her, mainly on diet, also on pain control. The OK foods for IC are limitedenough, but she has vulvodynia besides. Some foods that are fine for IC cause a lot ofpain for vulvodynia (especially anything with a lot of oxylates). If one really eliminatedall the "NO" foods for IC plus all the "NO" foods for vulvodynia, itwould be really hard to get enough nutrition to be healthy, I think. I feel so terrible hearing about the bad pain episodes she has after eating a few toomany of the "risky" but nutritious foods. I would love to be able to help bycoming up with good ideas for pain control, other than heating pads, which she alreadyuses. Does anyone have any insights or good, experience-based suggestions that I mightpass along? Also, I notice from reading that IC patients are more likely than average to havevarious other diseases, most of which my friend also has. For example, she has migraine,vulvodynia, fibromyalgia, sjogren's. (And no, she's not a hypochondriac; she's aremarkably active, strong lady, maintains her own 2-acre garden, takes classes, etc.) Doesanyone have suggestions that would be particularly good for someone with these multipleconditions? Email this Message Reply Delete Edit Ignore boring discussions - Advanced View Subscribe Home | Search | Free Forum | Partner | Advertising | About Delphi | Jobs | Help | Tour Copyright © 2001 Delphi Forums Inc. All rights reserved. Privacy Policy.
CommentFrank, what if we use condoms while having anal sex? You think that's a good idea? Iknow how to practice safe sex. I was just wondering if having this disorder would makethings worse if I tried the anal way. Thank you.
CommentTo answer your question honestly I assume you are being sincere and not trying to wasteour time. Anal intercourse does carry many drawbacks, even if using condoms and plenty oflubricant some fecal matter is bound to be brought into areas that are not desired. Thereis still the matter of inflaming the sphincter muscle and rectal tissue. Why riskinflamation and a possible tear? While the sensation for the man is no doubt pleasurableand may be the same for the woman I think the symptoms of these illnesses outway thepleasures. Even healthy women are at great risk of infection from anal sex, using a condommight lessen the transmission of fecal matter to the penis but does nothing to keep anycontimination from reaching the vulva or vagina. I am being serious and I hope you are to.Consider alternatives good luck.
Commenti was wondering if anyone knows of a physician in TEXAS experienced in dealing withvulvodynia. i am a medical student and have seen physicians at our teaching hospitalseveral times for my problem. not one of them has ever offered vulvodynia as a possiblediagnosis but after searching desperately for a name for my condition, i am nearlyconvinced that vulvodynia is it. i have another question as well. this started about 2years ago as intense vulvar burning (making intercourse unbearable) with occasionalfissuring and tearing (but no bleeding) of the vulva. it spontaneously subsided for aheavenly 6 months but is now returning. is this typical? thank you all for your input andfor supporting others through this site!
CommentFrank, I'm a little upset that you thought I was asking about anal sex just to waisteeveryone's time. That is not even the case! I'm just trying to get answers just likeeveryone else. I don't know what made you think I was trying to waiste anyone's time.Anyway, thanks for your input
CommentTo the person who posted on anal intercourse I am sorry if I offended you by beingsuspicous. You did not post a name and sometimes people use these site for the wrongreasons. Usually a man or woman will give their first name and then a brief storydescribing their symptoms or experiences. I was cautious to answer and keep this serious.I think most try to avoid being too graphic, of course this is a very delicate illness andthe discussions are very personal. I did not mean to hurt your feelings and certainly didnot intend to leave such a serious question unanswered. Anal sex is serious under the bestconditions. The ladies here suffer with pain, burning, itching , inflamation and tearingof the Vulva. Many have recurrent yeast and urinary tract infections. Anal sex is probablythe last form of pleasure to be explored. I hope I made up for any misunderstanding anddid not offend anyone else.
CommentI'm sorry to be a dampner on everyones optimism but I'm having a bad pain day afterabout a week of relatively pain free ones. I so feel like I"m on a rollercoaster ofemotions with this thing. Like my mood is directly related to my vulva (ha! how to get intouch with your feminine side with out really trying). Anyway I had sex for the 1st timewith this guy I;ve been seeing, took things very slowly but now I have stinging tears. Itis so depressing. If I have to live with this for the rest of my life I'm not sure howmuch longer it will be. I know theres more to sex than penetration but why should we haveto compromise. Why can't we enjoy whatever method. Besides its difficult enough findingsomeone who'll committ to you let alone someone who is willing to limit their sex life(well, where I live anyway). Maybe I'll be alone and in pain forever. I'm sorry I don'tmean to bring anyone down. I just feel so lost at the moment.
CommentTo Liz: You have every right to be upset, there is no reasoning these terribleillnesses. My wife gets recurrent tears in the same spot at the base of her vulva. I'mafraid to even have intercourse thinking I will hurt her. What choice do we have but toadapt? Sure vaginal intercourse between two people who love each other is a beautifulthing but we are limited now. I try not to think of the past and how painless andwonderful it was. We deal with the now, find a position where less pressure is put on thearea that gets hurt. Use lubricants, moisturizers and try to keep our sanity. Nothing isforever not the pleasure or pain, the same way they are clueless as to the cause and cureis the same way it may all turn around. I know it's hard to be cheerful and positive whenyou are in pain and unsure of the future. There may be alot of losers out there but Ibelieve there are some good guys who would love to be with woman such as yourself. We keepthinking of this ideal woman who can do and have it all, at best it is a temporary thingto be all that. Do the best with what you have within your limitations. I'm not Mr.Cheerful myself this whole thing realy bothers me but I try and force myself to focus onwhat we can do to remain lovers and friends. Good luck.
CommentTO GREG and LYN: Frank has already given you the answer about ATYPICAL yeast, but I wanted to also letyou know what worked for me. As Frank said, ATYPICALS are just different strains of yeast. The normal kind MOSTpeople get is Candida. That is the COMMON type. But, there are SEVERAL other strains ofyeast (NOT as common), such as the one that I had (Torulopsis Glabrata). These strainsdon't respond to the usual antifungal medications. For me, I had to be on Nystatin vaginalinserts and Boric Acid vaginal inserts for several months. (I have listed my whole regimenin Guestbook number 15, in a post dated 11/15/00). When they tested me for atypicals, they weren't able to go to the lab, test the cultureand let me know immediately. It took like a week or two of "watching" my slideto see the yeast develop. I still have vulvodynia, but not NEARLY the pain I had before I got the rightdiagnosis. Being put on the correct medication made a WORLD of difference! I hope thishelps you. Deborah
CommentTO LIZ: I understand your frustration and pain. Last night my husband and I hadintercourse after about 2 months without. It hurt SO bad at the vaginal opening. It wasNOT pleasurable for me and I don't care if we ever have intercourse again. Any kind ofphysical contact to my vulva causes me anything from discomfort to pain!!!! But, myhusband has stuck with me for 20 yrs. so there ARE good guys out there like Frank B haspointed out. Hang in there and pray for a cure.
CommentI've had vulvodynia for about six years (only diagnosed in the last year). I've beenthrough all the terrible tests and treatments that I've read about here from other women.Mine come and goes with my period. I have localized pain/burning in a specific area, novisible symptoms except sometimes redness. I believe it was brought on by pregnancy. (Bythe way, I didn't think natural birth was any more painful than what my friends withoutvulvodynia describe.) I was also diagnosed with HPV at one time although I have doubtsabout that diagnosis. I HAVE FOUND SOMETHING THAT TAKES AWAY THE BURNING: RUNNINGWATER!!!! While in the bathtub, I run comfortably warm water over the area by laying downwith the vulvar area directly under the faucet (this takes some flexibility). Within about5-10 minutes the burning sensation disappears. It normally stays away for several hoursafterwards. I would suggest doing this as often as needed and also after sex (if you'reable to have it) and after going to the bathroom. I'VE ALSO HAD SUCCESS WITH PHYSICALTHERAPY (twice a week)- Biofeedback (tens mode) My therapist also massages/works thepelvic muscles manually as well as legs, back and neck. I noticed results almostimmediately. This month instead of ten-fifteen days of pain, I'm down to about two. I STAYAWAY FROM: creams of any kind, birth control pills, condoms, high oxalate foods, tampons(sorry ladies, but they definitely make me worse), extremely tight clothes. I wear loosefitting, airy-type pants with no undies whenever possible. I drink a ton of distilledwater!!! I know everybody's different but this stuff is helping me so it might helpothers, too.
CommentTo the woman (women) concerned about vaginal delivery vs c-section: I totally agree with the others that have posted on here regarding your right to askfor what you want from your doctor. I am single and have no children yet, but this was myconcern several months back. I addressed the very same issue with my GYN - and mind you,he is supposed to be an expert in this field - but he and his partner both told me that"a vulvodynia patient would be hard-pressed to find a doctor willing to do ac-section" because it is a question of higher risk of complications/death associatedwith these kinds of deliveries". I SAY IT HAS MORE TO DO WITH WHAT FRANK B. STATES,IT BOILS DOWN TO INSURANCE AND MONEY. So my advice is to find a doctor that iscompassionate, caring and RESPONSIVE TO YOUR NEEDS. It is YOUR body, not anyone elses. Donot let a doctor and his medical staff, or even your insurance company, try to tell youthese kinds of things!!!!! YOU know that the pain is real and present and here to stay.Why should you suffer through a vaginal delivery only to find that this condition couldquite possibly get worse? YOU should have the right to demand what you feel is appropriatefor your situation. Another suggestion: Read some of the previous guestbooks. I am not sure exactly whichones, but I addressed this same issue in one of them, and a few ladies wrote back withtheir responses. Best of luck with a happy, healthy, pain-free delivery. When it comes time for me to address this same issue, I will be fighting every step ofthe way to find a doctor who is on my side and will let me decide what is right for me andmy baby. Take care, Sheri
CommentI have been following this forum for three years, since my burning started. I haven'tfound any relief, though Lord knows I have tried everything. My doctor tells me that shebelieves my problems are caused by Herpes virus, hsv 1 or 2, and that if all people whosuffered vulvodynia were tested, the vast majority would be positive for this virus aswell. I have never had herpes outbreaks, but my dr. says that most people don't. Instead,the disease can cause nerve irritation to regions served by the sacral ganglia (whereherpes resides). These areas include the buttocks, inner thighs, genitals, perianal andeven bladder regions. Antivirals may or may not be effective, as the pain isn't caused byoutright outbreaks, but rather by nerve damage that the virus causes when taking upresidence in the nerve centers. How may people here have tested for herpes?
CommentDoes anyone have a tingling sensation in their labia? If so do you notice it at certaintimes? Does your doctor know what is causing it? I have it almost daily even though I amtaking 50mg zoloft; it was the first sensation I felt before all the pain set in when Ifirst got vulvodynia, and the tingling was the first thing I felt after my surgery whichtold me it wasn't gone. Lauran
CommentI am new to this website and I won't bore anyone with my story but it is basically thesame as many other sufferers. However, I actually became pain free for approximately 3years until this past February when I became ill with bronchitis and was put on Zithromax.This antibiotic, along with my immune system being low put me into full tilt vulvar pain.I've tried my old remedies that I had the most relief from: boric acid, tea tree oilsuppositories and I am on Diflucan, 150mg one a week for 6 weeks. After seeing so many MDsduring my first bout of vulvodynia, I never, ever wanted to see a doctor again. That iswhen I started looking for alternative treatments - which eventually worked. BUT THIS TIMEI seem not to be able to find relief. MY pain is not anywhere near as severe as some womenwho can't even have normal sexual relations - mine seems to appear after havingintercourse. I can have pain for days afterwards, then have diminishing to almost no pain.As soon as I have intercourse, it starts up again. I finally broke down and went to see myGYN and she did culltures, etc, and they all came out negative. I also told her that inthe past, even though I was essentially pain free for 3 years, there were certain times ofthe month I would feel those "twinges". Those times seemed to be right aroundovulation. When I got those twinges, I would use tea tree oil suppositires and it wouldclear up. SHe told me that I have cyclic vulvodynia and when I took the Zithromax, itthrew my system off totally. SHe even suggested that I had had a yeast infection aftertaking "Z", but treating myself with DIflucan (a RX I always have on hand) andusing tea tree oil supppositroes probably stopped the yeast - BUT, and this is the big BUT- my body most likely had an allergic reaction to yeast. SHe cultured me for yeast and itcame out neg. I know in my mind and in my body, that this "pain" is some sort ofinflammatory response to something going on in my system. I have also read where yeastcould live deep inside the vaginal walls and any disturbance of the vaginal lining, suchas tampon removal or having intercourse causes the lining to rub off and yeast comes outof hiding and then leads to pain, irritation, buring, etc. and a normal yeast culture willfail to get those deep hiding cells. That is why some GYN's recommend long treatments oforal yeast meds to rid a patient of a nasty infection. I have also wondered whether onecould be allergic to their spouse's semen. Or could the semen irritate and cause theburing, etc. I would love to get someone's opinion on my thoughts. For other new sufferersof vulvar pain, you will have days that are bad and days that are better. Cherish thosegood days and make the most of them. DO not let this disease run your life. I made thatmistake the first time around and I refuse to live my life according to whether I havepain or not. I can remember many times getting up in the morning and getting out of bedand feeling the pain, and then being miserable for the rest of the day. DOn't be obsessedbut be aggressive! Learn everything you can about your condition and never be afraid toask questions. Become your best advocate.
CommentTo Jillian and Clare: I think you both made some factful points. I remember readingyears ago that semen can cause allergic reaction, depending on its individual componentsand the specific response of different women. That would account for some of the burning,itching and inflamation. The herpes theory could hold true for a percentage of the ladiesbut I believe there are many causes for these illnesses. When you read of so many womenhaving symptoms after a course of anti-biotics or the birth control pill it makes yourealize there could be a multitude of contributing factors. I know my wife very well and Ihave thought long and hard as to the medications, illnesses and other health relatedissues that might have started this. My mind has changed several times during the lastyear and a half. I ws sure it was hormonal causing the vulva to tear, then I thought yeastbut she has had yeast infections throughout our twenty years together without the tearing.Maybe it was genetic or environmental? Many theories and I'm sure some with merit butwithout extensive research that's all they are. I hope all of you get relief but it willrequire respect from your Doctors and research. None of this is in your heads except thepain and anguish caused by the Vulvodynia. Be vocal stay strong.
CommentExtraordinary women and partners of them - I salute you all! About 4 years ago I wasdiagnosed with Lichen Schlerosis. I'm not sure what the difference is between this andVulvodynia and I'd love to know. Direct me to an earlier guestbook if it has been answeredbefore. I'm not clear now how my condition came about and my skin specialist didn't know, but Ihad recently gone back on the pill and had a thrush infection. I was extremely inflamedall around the vulva and anus and sex was masochistic to say the least, riding a bike(which I used to do every day) more so. I tried various levels of cortisone cream whichonly made it worse and finally ended up at the student clinic of the Southern School ofNatural Therapies in Melbourne, Australia. I ended up on the full Candida diet, went offthe pill, didn't eat wheat, took fish oil supplements and a natural calendula pessary (please excuse my spelling) So, no yeast (vegemite wasn't too hard to drop), dairyproducts, even yoghurt, sugar, mushrooms, spicy foods - the usual. I was absolutelyrigorous with this for 9 months. I stopped cycling, I did yoga and generally lost size aswell as symptoms. Actually the only treat was straight vodka about once every couple ofweeks. My boyfriend at the time was great, and he never was treated for thrush or yeastinfections. After that time my symptoms had gone and I gradually started reintroducingfoods into my diet. I haven't had any re-occurance since then, I occasionally get thrushand have it now after antibiotics to kill off a two month urinary tract infection. I'mgoing back on the strict diet because I notice how similar the thrush feels to when I hadLS, the only difference is I don't have the white 'speed stripes' (lack of pigmentation) Ihave no idea if this will make any difference to anyone. What I will say is that going onthe diet was like life and death to me, I was NOT interested in bits of me dissappearing!I do notice that I like a little drama in my life. Ask yourselves, if this thing washandled, what would my life be about? I wish you all many miracles and being able to love your life even with yourcircumstances
CommentTo Jillian, Personally, I believe what your doctor has suggested about the herpes virusprobably holds some merit. I have tested positive as well (I have had outbreaks, so I knowit to be true). Bear in mind, the virus can be subclinical (no visible symptoms) and itmakes sense to me that the pain involved could be from the virus' affect on nerves.Additionally, one of my doctors performed the lindocaine test. This test is used to provewhether or not the pain is superficial (on the skin's surface) or nerve related. They numbthe skin's surface in the affected area and then apply pressure, normally with a q-tip, todetermine if the pain can still be felt. If the pain is nerve related, the patient willstill feel it regardless of the lindocaine. I could still feel the same level ofdiscomfort as before the lindocaine. Another one of my theories is that the diagnosis ofHPV I received three years ago was incorrect and that the virus detected was insteadherpes. A specialist I got in contact with through an HPV support group actually suggestedthat this was the case. My dealings with her were all via telephone (her office wasseveral hours away) so I never got to see her. My doctor at the time dismissed it,however, my current doctor is receptive to the idea and is reviewing the biopsy results.If that isn't enough to convince me the two are related, the ONLY time I ever have anoutbreak is when my husband and I have sex (or try to) WHILE the vulvodynia is acting up.Once I caught onto the pattern, it was easy to avoid an outbreak. My vulvodynia come andgoes so we can have sex while it's not acting up without any problems. I think this isdefinitely something to consider.
CommentMy local newspaper had an article today on how women are finally speaking out about lowlibido. The article really talks about how their doctors are finally listening. Threeyears ago on the Oprah show her guest Christina Ferrare talked about low libido and how atestosterone cream helped her, now more doctors are testing hormone levels. What I'mtrying to get at is not libido that's not why we are here, I'm trying to demonstrate howlong it takes before our doctors respond to our problems. I'm a guy so I'm not welcomed atmy wife's Gyn office, it is up to you women who suffer to be vocal and not be stiffled. Iget very frustrated at how slow the medical community is to respond to certain issues. Isuffered for years with stomach pain caused by Helicobacter pylori a bacteria, when Ifirst mentioned it to my Internist he laughed me off saying there was no merit to thetheory of stomach pain and this bacteria. Well three years later that's what they checkfor .. I hope it won't be long before the Gyns get their act together and check forhormone levels, specific strains of yeast and whatever else contributes to theseillnesses.
CommentJillian - Several years ago, when I had my first bout of vulvodynia, I was put onValtrex, an anti-viral medication for herpes. My doctor at the time said the same as yours- that one doesn't always have to have blisters, etc. Herpes can live in the nerve endingsand will periodically shed, which can cause discomfort such as we're experiencing. Iactually had some relief from taking the Valtrex - not complete, but a slight let up. As Istated in my first note, I had been in remission and basically pain free for approx. 3years until a recent illness. My doctor put me on oral Nystatin today and I'm to take it for 1 week. If I do not haverelief, then I will take 150 mg Diflucan every other day for 1 week. If that doesn't doit, then I'll try the Valtrex again. In the meanwhile, I've bought a book on natural herbsand healing methods. Hopefully I will find a magical pain relief herb or salve. For those vulvodynia patients who are keeping track as to who gets this crappy diseaseand who doesn't, I am blonde, blue-eyed and fair skinned, so I guess I fit the mold. Ialso used to be a sun worshipper. In 1995 I went to a vulvar pain seminar at Scripps Institute in San Diego. It was heldby the Vulvar Pain Foundation. I met at least 60-80 women who all suffer with thiscondition. One woman I met believed her pain was chemically induced. That is, she wasextremely sensitive to anything chemicall. SHe used to be a hairdresser and was exposed tobleaches etc. One day she had what she thought was a yeast infection and was given terazoland within 24 hrs she had severe pain and swelling, worse than before using themedication. After that, she was never the same. Eventually, she could not use tolietpaper, wear tampax or pads, or even underwear. She ended up being completely disabled.Could you imagine????
CommentHi Lauren! Yes I to have that tingling feeling in my labia at times. Belive it or not,that's when my vulvodynia first began as well. First I was getting the tingling, then theirritations, then the itchiness, then the tearing, then the pain internally in myvestibular glands. I to started out just like you. You said you had surgery? What surgerydid you have and when did you have it? And how have you felt since the surgery? I had thepartial vulvectomy surgery nearly 16 weeks ago. I feel a whole lot better but I just haveto watch what I eat because I'm trying to stay away from the high oxolates foods. Theycause me pain. But anyways, as far as that tingling goes, I don't feel it as much as I useto feel it before. I would say that I probably experiece about 5 minutes a day of it andthat's it. It doesn't hurt or anything, just tingles thats all. I don't have any tears norirritations thanks to the vanicream I used nearly a year ago. It has helped me a lot and Ihaven't had to use it in nearly a year. I only used it once and that's it. Get back withme and tell me your story. Take care. Stephanie, where you at girl? Oh are you on your honeymoon or something? And Laurelwhere are you? I wonder if both of you are on vacations. Check in once you read this. Byenow! Ms Christina, if you are reading this post, please post and let us know how the surgerywent. I want to know if you're okay or what. I have my husband praying for you as well.Take care and get well soon. Frank, how is the vanicream working for your wife? Please let me know. Thanks!
CommentTo lynn: The Vanicream seems to be the best thing so far in terms of a moisturizer thatisn't greasy. Unfortunately intercourse is still a very delicate procedure one wrong moveand she tears. Very limited in position and action. I didn't expect miracles but thankyouso much for the thought. Patience is a big part of this whole thing. Yesterday my wifetook my daughter to a Dermotologist, I said while you are there ask about the Vulvodyniaand see if the Dr. has treated anyone. My daughter told me the answer was No!! verydepressing at times, She still won't see another Gyn. I do not expect her pursue this nonstop but her attitude of not bothering bugs me to say the least. My best to you and allthe other ladies.
CommentClare made a comment that there is a "mold" to us vulvodynia sufferers (skincolor, etc.). I wasn't aware of this. What is the "mold?" I am a brunette, fair skin, hazel eyes, for whoever might be keeping track of thisstuff. Never been much of a sun worshipper. Very chemically sensitive.
CommentHey Everybody. Lynn, I'm here. We are not leaving for Florida until Thursday night, andI won't be back until the 22nd. Laurel is gone on her honeymoon. I think she said that shewould be gone for 9 days. I hope everything is going okay for you. Are you feeling okay? Iskipped a couple of days without the Vanicream, and it seems that when I don't put it on,I burn for a longer time throughout the day. Maybe it's helping a little. I can almost sitdown for about 4-5 hours now before I start to burn. Before it usually started burning inless than 2 hours. I might have told you, but I am completely off the Elavil. My husbandwas talking about having kids last night, but he did say only when I am ready. I hope thisis not a big chore. Gotta go! Keep your heads up ladies! Talk to you soon.
CommentHope you all are doing well! I just wanted to comment about the herpes thing...I don'tnecessary agree that everyone with vulvodynia has the virus, I've been tested for herpesand it came back negative. My first bout with vestibulitis was when I had intercourse withmy now husband. Before that, I had never experienced any symptoms. Since then, I only getflare-ups every now & than, thank God, its not constant. For example, I've been painfree for about a week now. As for the race issue, I don't agree, I am a fair-skinned Hispanic woman, brunnettewith brown eyes...I do however believe that most of us with this disease are fair-skinned.
CommentTO MV: I also never had symptoms until I had intercourse with my husband. It's been offand on now for 20 yrs. I went for over a yr. without any problems, but the burning is nowback intermittently. I'm a fair-skinned woman with dark hair and brown eyes. I've alwayshad sensitive skin and am allergic to a million things.
CommentHi everyone. I realize that there is very little known about all vulvar disorders andthat all kinds of doctors who don't know what they're talking about will tell you allsorts of things. However, I think it is improtant for us all to be selective as to whatinformation we choose to share on this website. Vulvodynia or vulvar vestibulitis aredisorders - they have absolutely nothing to do with Herpes or any other STD. I have had 2very good doctors here in Canada pound this into my head. I have been with the same man mywhole life so my chances of getting an STD are slim to none. However I still somehowmanaged to get interstitial cystitis and vulvodynia. My advice to everyone is to make sureyou are given all the proper tests before being diagnosed with anything.
CommentI just wanted to comment on what Resa said about herpes and S.T.D. .I don't think mywife has either of these conditions but that does not rule out the possibility that theyare the cause of some women suffering with vulvular pain. Since the Dr.s don't know thecauses and I believe there are many ,then we can't rule out anything. Sometime in thefuture we may find out that "Vulvodynia" has many different contributingfactors, hormonal for some, genetic for others and yes herpes or s.t.d.. I would not beinsulted for a doctor grabbing at straws when thinking of a reason, at least they arethinking it is a start. I would be cautious of those who offer a cure, that bothers medon't promise something you cannot deliver on. Like I was getting at earlier maybe thesymptoms my wife suffers with the tearing is caused by hormones or genetics but anotherladies terrible burning , itching or pain was caused by herpes or a strain of yeast. Ithink we should remain open to everything and cautious at the same time. Thankyou
CommentRegarding what Resa and Frank were discussing: From what I understand, the term "vulvodynia" is basically generic. By that,I mean that the term means simply "vulvar pain." It describes a pain in acertain area of the body, such as "headache" does, but it doesn't tell you theCAUSE. A headache can be caused by LOTS of different things (serious or not so serious):alcohol, sinuses, eating something cold too fast, etc. Vulvodynia is merely a descriptive term for the type of pain that we are feeling. It'snot really a "disease", per se. (This is what I've been told anyway!)
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CommentHey everyone, This is going to be as brief as I can. I can’t write for long, so I will have totype this up in word and take several breaks writing a little at a time. If Josh catchesme on the computer he’ll carry me to bed and lock the doorJ. I just got back fromWisconsin last night where I had my surgery done. Dr. Thomason checked me out before Ileft and she said that the stitches where on their way to healing just fine. I had somebruising too, but that has cleared up considerably. Right now most of my pain is from thenerves coming back. She told me that’s normal and will go away as they all grow back.I have already had some of the nerves come back and then cool off. It is really weird thatthe nerves seem to be coming back one side at a time. My biggest complaint is that I had some sort of reaction with meds and had lots ofdizziness, nausea, and a racing heart rate when I stood up. Let me tell you that were nofun with a bunch of stitches in my crotch. My husband was worried and had the doctor paged(we where back at the hotel at this point, I only stayed in the hospital overnight). Dr.Thomason was so wonderful. She called us back at the hotel twice a day while I was sickand had us try doing things different with our meds. She also prescribed medicines tobring the nausea down. It still turns out that my body doesn’t want any morenarcotics so I am attempting to do this with just Tylenol OWCH! I’m using an icepackand that seems to help. Dr. Thomason removed all of the vestibulary glands including my Bartholin’sglands, and the Hymen. A bit of the skin from the perineum was made into a flap to betucked in vaginaly. I guess I surprised her a little. My glands where 4IN THICK! When Ihad spoken to her about the surgery before, she told me that the glands can be up to 3inches deep, but I guess she had never seen them go 4 inches before. I also had scar tissue and Fibromas (little benign tumors) all over the vestibularyglands. She ran some more tests on the tissue removed, and was able to determine that theFibromas were not malignant (thank GOD!). She also found that I DO have the beginningstages of Lichen Sclerosis. She had always suspected I had it, but the biopsy done beforedidn’t show anything conclusive. The Lichen Sclerosis was found in the fourchette,which was not an area covered with the biopsy. She told me that she doubted that sex wouldhave ever been or ever would be pleasurable as long as all that was in there. Well after hearing all that I feel much more secure that I made the right decision.Especially after I looked at my self with a little mirror for the first time. That was ashock, even though I had seen pictures and knew what they where going to do. It is still ashock when it’s your own vagina! Poor Josh had to hold and comfort me for about ahalf an hour after that. That was only 2 days after the surgery, needless to say thingslook much better now then they did then. There is not nearly as much bruising or swelling. The doctor told me that I will probably be unable to sit for a good 5 weeks, whichreally bummed me out, then I came up with this awesome idea while I was using the toilet.I can t sit comfortably any other time, not even with a donut cushion (the hole is toosmall) but some how it wasn’t as painful using the toilet. It then occurred to methat it was because the seat had a very large hole (bigger then the donut). So I sent myhusband out to get me one of those toilet covers with the soft foam in the seat. I justhad him remove the lid and stuff so there is just the seat. It came in real handy while Iwas waiting for the doctor at my appointment before I went home, and in the car on the waythere. I still can’t sit for very long, but it is much better then not at all. Ishowed my toilet seat idea to Dr. Thomason and she just thought it was a riot. Of coursefor the ride home I just stretched out on an inflatable mattress in the back (we borrowedmy parents minivan). Josh (my husband) has been taking great care of me. I don’t know what I would dowithout him. He has been out running to get every little thing forme. He reads to me, andhe gives me back messages, the back gets really stiff after lying on it for several daysstrait. He got me flowers when I was in the hospital, and a little stuffed rabbit that isdressed just like a little surgeon. It’s the most adorable thing I have ever seen.Josh has been the best husband ever this past week. I want to thank everyone for his or her wonderful support and prayers. It has been agreat help to me. Love, Christina Bunny Oh, for Lynn, I live in MN it usualy takes me between 7-8 hours to get to Milwaukee from hear in thetwin cities. Thats why I had to spend the week there, just incase there where anycomplications.
CommentI am posting again because I have noticed a number of people offended by religiousrefferences. I have also noticed that the people saying bless you or I will keep you in my prayers,do just that leave it to a casual mention ment as support. I understand that there are athiests and angnostics among us and I am sure most of usrespect that. I can also respect how such a personal disease like this can rob someone whowas once faithful of their faith. However there are many of us out there who are suffering just as you are who arechristians who apreciate the support. There have been many things mentioned on thisguestbook that I did not apreciate either, but I try to keep an open mind and to ignorewhat I do not like. The nice thing about a computer is you can turn it off. Untill they have a guest book or list serve for CHRISTIAN vulvodyinia sufferers, letstry not to get so offended of the little things and just let comments we dont like rolloff of us. As for myself, there are far to many injustices out there for something as little asthat to get me that upset. There was a post I read a while ago that some lady wrote in one of the earlyerguestbooks with her first entry. Right away she said "no religious advice". Itis just a thought and not to offend any one, but maby thats what people should do if theydont want it directed at them. It wouldnt fix anything but it might help. Christina P.S. Christian support always welcome with me:)
CommentI'm watching Oprah and she has on the cast from Sex and the City. They showed a scenefrom the new season where one of the characters goes to the Gyn. thinking she has a yeastinfection, but she's diagnosed with Vulvodynia and prescribed a low dose antidepressant.Oprah didn't comment on Vulvodynia after they finished the scene. They were just laughingabout the word vagina being used so much on the show.
CommentI have been suffering from vulvodynia for nearly ten years. Some bouts have beenhorrendous, but for the most part, I have not had the chronic pain many of you experienceevery day. I know how you feel, though, because I did have that pain for a year! Worstyear of my life!!! Anyway, I am writing today to voice a complaint. Many of us have tried to get vulvodynia in the spotlight. We feel that the morerecognition this awful illness gets, perhaps, the more research efforts will be put towardit. However, not all the recognition out there is good. Today on the Rosie O'Donnell Show,I saw a preview of 'Sex in the City.' Now, I have not personally viewed this program, butwhat I saw today enraged me. In the clip, one of the characters is in her OB/GYN's officecomplaining of constant burning ( I'm sure we can all relate to that!). The Doctor says,"Sounds like Vulvodynia" (or something to that effect). "Take this and itshould clear up" (We wish it was that easy!). The doctor also wanted this characterto keep a diary of her vulvar pain. The character repeats her doctor's advise to herfemale "friends." The supposed friends tease her and make a joke about thediary. Nice friends, huh?! Now granted, this was only a preview; It lasted less than two minutes and I did not seethe whole show. Therefore, the show could have showed the more serious side of vulvodynia.Unfortunely, Rosie's audience did not see anything more than a silly illness that made youkeep a diary, and was, frankly, funny! I wish the writers of the show knew how much this illness affects the lives of all ofus...our children, our husbands, our friends, ourselves. It infuriates me that they madevulvodynia into a joke. They made it seem like something that is easily cured and that itshouldn't be taken seriously. This is public recognition we can all do without! Thanks for listening to me bitch. I plan on writing Rosie's show with my complaint...Ihope anyone out there, that saw the show, will do the same. She should let some of us onher show to discuss how incredibly painful vulvodynia really is ...IT'S NOT FUNNY!!!
CommentTO LEE: I totally agree with you. The Dr. in the scene said that Vulvodynia isn'tserious; just uncomfortable. I WISH THAT WERE ALL IT IS. We could write to Oprah also, butwe won't get anywhere with that.
CommentMy best wishes for a full recovery to Christina B.. I watch Oprah when the topic seemsinteresting such as Dr. Phil but when I saw it was going to be Sex and the City I passed.I will be writing to Rosie at www.rosie.com to better explain the reality of Vulvodynia.Maybe the show will have a different attitude when they have the facts. Can't hurt totry...
CommentI was wondering if someone could tell me where to find this cream called vanicream? Iwent to the drug store they never heard of it but I would like to try it. I suffer fromvulvadinia. I know I spelt it wrong. thanks.
CommentYou can read my post at oprah.com under the message boards fo today's show Sex and theCity ; Vulvodynia is a real disease!! Please take a few minutes to register and post amessage on the subject. I have been reading your posts and so many of you are welleducated and could have a better impact than one guy. Get the word out!!!
CommentHi Cindy, I am the Queen of the Vanicream. I'm the one that put that word up on thissite. The Vanicream is sold at Walmart and Target stores. That's where I get mine from. Idon't know of any other stores that carry them. Oh and one more thing, you don't need aprescription for it, but it is sold behind the pharmacy counters. To MV and whomever else is talking about the race this disease effects. I am an africanamerican female. Dark complected. It affects more than just fair skin. To Christina, I'm so glad to see your back and doing well. I've read both your post andthe second one where you were talking about people's religion and all that, Well I wasconfused. I'm not sure I understand any of what you were trying to say. I missed yourpoint totally. In the previous post to you, I had mentioned that I had my husband prayingfor you and all that. Well I don't pray any more. I sorta given up the faith. He prays allthe time and he doesn't believe in given up the faith. So since he believes in the powerof prayer, I have him pray for you. I hope you're not upset or offended by that- the factthat he prays for you. Well sorry if I've upsetted you. Good luck and take care. I wishyou the best as you recover.
Commenti am livid that Sex in the City is making our pain a comical event. what do they knowabout suffering--constant vulvar burning? we are living a life that no one can relate to,and i feel more and more desparate as i write magazines/newspapers/tv shows and get ZEROresponse. Has anyone ever written Ms. magazine? we should shoot for that since i think GloriaSteinem is still the chief editor, and they are very dedicated to women's issues. I just tried to e mail ROSIE but i could not find a place to leave my comments--frank,do you know where it is? could we all e-mail rosie in one span of 24 hours? then she would have to listen if weflood her with letters. can we all get together and do this? my mother is a photographer, and we are thinking about making a documentary aboutliving with vulvodynia. it might take us a year but maybe people need to be confrontedwith live imagery before they can feel sympathetic. i know i am only an idealistic college22year-old--but we must be heard!! Has anyone had any success with DESIPRAMINE? I am starting it today, and i hope thatfinally this will be the drug that helps take away the burning. i am apprehensive aboutgetting my hopes up. i think of all of you all day long. COURAGE and STRENGTH to us all!
CommentJustine, are you out there? I've talked to you back in February after I had my surgery.You were always giving me good advice. If you are reading this post, please check in andlet me know how you're doing. And I also want to talk to you and tell you all about myrecovery and how well I'm doing.
CommentTo D: Go to Rosie.com and scroll to the bottom of the page you will find comments torosie, click on it and you can leave a message. I did and I also left a message on theboards at Oprah, it only took a moment to register and get access. Even if they don'trespond other women will read the message and become aware.
CommentTIME TO GET MAJORLY PRO-ACTIVE, LADIES AND GENTS!!!!! Just read about the Oprah fiasco on another vulvodynia site--I'm soooo infuriated I'mposting at every other site I contribute to so I can encourage ALL of us to start a wrtingcampaign. I wasn't aware that Rosie featured the same clip--geez these supposiblysympathetic women are causing me a lot of grief! I'm shocked that both Oprah and Rosiewould think vulvodynia wasn't worthy of discussion--Oprah especially. They both haveladies' magazines, too. What's up with that?!?! You know, I saw Frank's post over atOprah's site--way to go, Frank! I posted a message, too! I'm gonna head over to HBO's siteand see if there's a "Sex and the City" forum so I can post a message there too.I'm also hoping the writers of SATC are lurking around these vulvodynia boards forresearch purposes so I can voice my disappointment and disgust at treating the entireissue of vulvodynia as some sort of comedy routine--it's sickening, pathetic, and LAME!!!I'm a faithful viewer of SATC, and I fell I know where they're going with thispoor-disfunctional Charlotte angle. Last season she and her husband were unable toconsumate their marriage because he suffered from psychological impotence issues. Now it'sCharlotte's turn to develop some weird disorder that's gonna magically disappear by theend of the season. Ladies, we've just been knocked back to the 20th century--did you knowthat vulvodynia is all in your head and it will be cured by anti-depressants? "Justdrug 'em and maybe they'll shut up"--hasn't that been the answer to all our problemsin the past? Well, it's 4:00 am and I've stayed up far too late so I guess I should try to get somesleep. You know, I'm pretty P.O.'ed right now but curoiusly my body's not racked withpain--gosh, I guess vulvodynia *isn't* a psychological disease after all-is it? Sandee Gonna nag at all of you again just once more--get writin'!!!!! :-)
Commenti think my message just got erased but i will try not to repeat myself too much if itdidn't. i think we should write the network since they are sensitive to viewers' anger. this isalso a TERRIFIC time to write magazines and newspapers since they love controversy. i amproviding the address to the health editor of the NY times. i have written her/him andheard nothing but if all of us write they might listen. Health Editor The New York Times 229 West 43d St. New York, NY 10036
CommentPlease please please everybody go to the oprah.com site and leave you comments on therelevant message board. Its not until we speak in numbers that we will be heard.
CommentI just left my comments on the Oprah site. I have been known to write her letter alsowhich I think that I will do. We are sufferers, and it just makes me sick to see someonemake a joke of this. I was happy to see that some of you posted. We need to find thewebsite to SATC and post to them too. Have a good day everybody!
CommentFrank et al, I agree with you re the STD issue. Let me clarify what I meant. Therecertainly are people who will go to the doctor with these symptoms and it will be, indeed,an STD of some sort. However, if vulvodynia is the diagnosis in the end, it is importantto know that this disorder, in and of itself, is not an STD.It has been explained to me asa nerve disorder. Or, if you read the stuff on which Dr. Glazer's biofeedback treatmentsare based, it has to do with the pelvic muscles. We obviously don't know all the facts yetand I guess I wasn't very clear, however I really think this is an improtant distinctionto make. To jean: You are the only one who has mentioned pain and burning in the pubic area. Canyou elaborate on your condition so I can compare notes? To anyone ever pregnant with vulvodynia: What, if any, medications or treatments didyou stay on?
Commenti just left a long message on HBO's website. There is a place on the site (click onSATC) where one can leave messages to comment on Sex and the City in general.This might beread more quickly than Rosie or Oprah who must receive thousands of letters a day.
CommentTo Resa: You explained yourself very well and are obviously a smart lady. I understandyour point more clearly now but disagree with what the Doctors say concerning the nervediagnosis. I don't fully understand how they can make such a blanket statement that allvulvodynia is nerve related and they do. My wife gets pain because the skin in one area ofher vulva tears during sex and she has some of the other symptoms such as itching andburning. Her problem could be notone of inflamed nerves but something entirely differentthat affects the elasticity or the skin in that one area. I know that by loading up onElivil you queit down the nerves transmitting the pain signals but are you addressing thecause of the pain? I don't know if this comparison makes any sense but lets say you have atoothache, it is the nerves sending the pain signal to the brain and you could be sedatedto lessen the pain but are you getting to the cause; cavity or misalignment of the teethor abcess? To say it is nerves is such a simple answer and yet no answer at all.
CommentTo Stephanie and Sandee: I read your posts at Oprah and they were strong and to thepoint. I wish we had a better showing but like I said women will read them and become moreaware. Thankyou for making the effort I know it takes time and effort and sometimes seemshopeless, but time will tell.
CommentI want to comment on the STD theory. I have not been faithfully reading the site, so Imay have missed some entries by you and Frank on this subject. Plus I would like toapologyze up front if I come accross angry or emotional... I personally DO think that many times vulvodynia is a bacterial infection which issexually transmittable. Soooo many woman start this problem with a new sex partner, afterhaving no problems previously. Your doctors say that it is not an STD, because vulvodyniasufferers do not test positive for any known STD's. BUT, it could be that a certainbacteria simply has not been identified as an STD. I give this example alot, but I willwrite it again....Chlamydia (known to cause pelvix Inflammatory Disease and Infertility)only joined the ranks of beong called an STD around 15 years ago. Prior to that it wascondsidered NORMAL FLORA. Babies were born with Chlamydia Infections of the conjunctiva(eyes) because they passed through the birth canal of a woman that had chlamydia, andwomen's reproductive tissues became scarred up from this awful bacterium medical sciencecalled normal. Strep infections were ignored until recently too. Hell, Mycoplasmainfections are still ignored, unless you are seeinga fertility expert. When your culturescome back normal, all it means is that nothing grew that was not considered normal at thistime. How many women started with a new sex partner...getting reoccurring UTI's and then whatthey assumed was a yeast infection from the antibiotics they took from the UTI (personallyI think they had UTI's and then go on to develop vulva pain from the same bacterias notthe yeast infection). Not to say that yeast infections are not aggravating to the vulva. Again, I don't think that everyone with vulva pain has a bacterial infection, but forthe doctors to make a blanket statement with no research, and dump us all into one basketis awful.
CommentFrank, It makes me so mad that people would mock this disorder/disease for whatever youwant to call it. I have been speaking out lately to my family, friends, etc on this issuebecause they really don't understand. I commend you for keeping "in touch" withthis and for caring as much as you do about your wife illness. I hope that one day we allcan find some level of pain reduction and more happiness in our lives. Thanks for all yourcomments and keep them coming!
CommentAnd another thing....why would women be so relieved that it is not an STD? To me thisjust feeds into all the reasons I think that research will never be done on bacterialinfection for this flippin' disorder. People WANT it to NOT be an STD, because God Forbidyou got some dirty VD, to use an old term. Well, if you kiss someone with strep throat,you can get sick too...and if you have sex with someone who has an STD you can get thattoo. AND, for the most part most of us have sex, even if we are not married, and with thatwe run some risks, and anyone who is grossed out, or too puritanical to deal with that,just hurts research into bacterial infection of the reproductive organs. Look at Cervical cancer...it is estimated that 90% of cervical cancer is caused by HPV(warts). You catch cancer from your boyfriend ladies!!! So next time you feel sorry for afriend that has come back with cervical cancer...remember it was a nasty VD.
CommentI can understand why people are so outraged regarding the vulvodynia references in the"Sex in the City" episodes that were on Rosie and Oprah. I watched Oprahyesterday, and before then had had no knowledge of vulvodynia. I just knew that I had beendealing with the itching and burning symptoms for a year and a half, and visited severalphysicians who were not able to help me. As soon as I saw the show, I began doing Internetsearches, which is how I found this website. I now plan to discuss this disease with myphysician. I guess my point is that even references to the disease that are intended to becomical, may help people who are not aware that the condition even exists.
CommentResa You said that you are from Canada? Where? I am trying to find a doctor that will takeme seriously and help in treatment, but have had very little luck. Perhaps you have aname?? Thanks
CommentI kind of agree with Rachel, the more publicity the better. At least it is reachingwomen who are in pain, who have idiot doctors who are not helping them at all, and tellingthem their suffering is not even a real thing. Those women will see that they belong to agroup, that they are not alone. It might be wise to not be so sensitive, and realise that this is our chance topossibly be heard. That people's ears might be a little more open, and that at least whenwe say vulvodynia, we won't get from others "I have never heard of that", butrather "isn't that the thing that you have pain all the time on your vulva?" No matter what we will need to break through people's ideas of it being psychological,because so much of the medical community thinks that way anyway. I didn't see the shows,but it is difficult to be angry at Oprah, Rosie, and Sex and the City, when the God damndoctors (the scientists, with all of that education and experience) think that way, andtreat us poorly. My expectations are very low, due to my experience so far.
CommentWell, it's now 12:10 pm and I haven't slept a wink. I don't know if it's that I'm upsetor I just feel the need to keep checking the boards to read new messages and get the wordout! :-) So here's a bit of info I gleaned from the message boards that Dr. Glazerfeatures on this site: Chris from the National Vulvodynia Association has contacted HBOand they have steadfastly refused to feature any sort of info at the conclusion of theJune 3rd episode of "Sex and the City" so sufferers out there will know where toturn if they wish to seek help. O.K., what does this say to you? Call me overly sensitive(if I am this disorder has made me that way!) but it says to me they don't give a damn. SoChris is encouraging everyone to write to the producers and voice our disapproval. WEsuffer from the disease, let's get our voices heard! Here's the address: Re: VULVODYNIA,Executive Producer, Sex and the City, HBO, 1100 6th Avenue, New York, NY 10036. I would like to add that Jennifer makes a good point about us seeming too sensitive,but I needed to vent and felt like I needed to clear up any misconceptions about thisdisorder that viewers of the Oprah Show may walk away with. The last thing we want is forpeople to get the impression that Vulvodynia is an easily cured affliction that onlystrikes sexually frustrated uptight goody-goodies and anti-depressants and keeping a diarywill make it magically disappear. So I'm encouraging all of you to write to the producers,thank them for bringing this disease to the public's attention, but voice our concern thatit was *Charlotte* who came down with it (if you know Charlotte's character, you'll agreethat she's the most sexually repressed of the lot), and encourage them to educate andenlighten the public regarding this *very real* and *very painful* disease. You can betI'm gonna watch the June 3rd episode, I JUST HOPE IT DOESN"T UPSET ME TOO MUCH! Jennifer, I'd like to add that although the theory of a *sexually transmitted* diseasemay be true in many cases, I have had one lover in my life--my husband of thirteen years.We were both virgins and have remained faithful to eachother. We share a deeply committedlove for eachother. This condition appeared for me after I took an eleven day course ofKeflex (antibiotic). The dose was far too strong for what I suffered from. It's been sucha long struggle for me (one year now) to receive the proper medical diagnoses. I havesuspected a systemic yeast infection that is deeply rooted in my pelvic tissues for sometime now. I'm getting my blood tested and will see if it's safe for me to use Nizoral (anantifungal) for awhile to see if that lessens my symptoms. My family and friends are allaware of my problem and have been sooo supportive. I cry when I read of the tendernessthat many of the husbands and boyfriends out there are showing to their partners who aresuffering from this disorder. It comforts me to know they can be so patient and loving. Ireally like to say right now that my heart goes out to each and everyone of you. I hope Iwill be able to share some good news with you regarding my symptoms within the next fewweeks. Sandee
CommentI too am upset that they picked Charlotte of all the women on the show. I had 8 yearsof sex with out one bit of pain or irritation, and boom all of a sudden I got vulvodynia,and I had shrinks tell me I probably feel guilty about having sex, because I had a closerelationship with my father!! Disgusting! So, believe me I have some of thedissappointment too, about how this is being handled. I do believe that some women have vulvodynia from a yeast infection. I also beleivethat some women have vulva pain from a trauma to the area, like child birth. We should notoverlook that when you take antibiotics your flora gets screwd up, and "germs"that are not susceptable to that antibiotic begin to grow, because other bacterias arebeing killed off. That is why the yeast grows, but also other BACTERIAS can grow too.Moreover, if a woman took an antibiotic for a Urinary infection or a bladder infection, orfor that matter a vaginal infection, we must at least give in to the possibility that theinfection continues, and you are just simply fighting the same thing. Lastly, and mostimportantly I would like to say that I do not think that you necessarily would have tocatch the infection through sex, but that if you got the infection another way (possiblyfrom taking an antibiotic) that now that you have the infection, most likely it can bepassed sexually...so now your husband has it, and will continue to reinfect you, get it?Many women say that antibiotics don't help them, but do not feel significantly worse whiletaking antibiotics...if you had a bad yeast infections...you would feel REALLY BAD onalmost any antibiotic.
CommentI too am upset that they picked Charlotte of all the women on the show. I had 8 yearsof sex with out one bit of pain or irritation, and boom all of a sudden I got vulvodynia,and I had shrinks tell me I probably feel guilty about having sex, because I had a closerelationship with my father!! Disgusting! So, believe me I have some of thedissappointment too, about how this is being handled. I do believe that some women have vulvodynia from a yeast infection. I also beleivethat some women have vulva pain from a trauma to the area, like child birth. We should notoverlook that when you take antibiotics your flora gets screwd up, and "germs"that are not susceptable to that antibiotic begin to grow, because other bacterias arebeing killed off. That is why the yeast grows, but also other BACTERIAS can grow too.Moreover, if a woman took an antibiotic for a Urinary infection or a bladder infection, orfor that matter a vaginal infection, we must at least give in to the possibility that theinfection continues, and you are just simply fighting the same thing. Lastly, and mostimportantly I would like to say that I do not think that you necessarily would have tocatch the infection through sex, but that if you got the infection another way (possiblyfrom taking an antibiotic) that now that you have the infection, most likely it can bepassed sexually...so now your husband has it, and will continue to reinfect you, get it?Many women say that antibiotics don't help them, but do not feel significantly worse whiletaking antibiotics...if you had a bad yeast infections...you would feel REALLY BAD onalmost any antibiotic.
CommentSandee, I wanted to add that I ws cured by taking IV antibiotics, I was not sure if youknew which Jennifer this is, and what my experience has been.
CommentAlthough I don't frequent this list, I am a frequent user of 2 other vulvodynia lists,and an e-friend of Jennifer's (hi Jen!) who has had recent success. Since I want to spreadthe word a bit (since it's a different type of cure than we're used to), I thought I'dpost here. This is especially for those women who have irregular periods, headaches,and/or decreased libido. Briefly, I had pain on contact, excessive discharge and cutting for 3 1/2 years. In theend, we suspected recurring anaerobic bacterial infections because even though cleocincream improved my condition, my vaginal flora never got back to normal and the infectionskept coming back. We couldn't figure out why the flora was off balance and how to get itback. Believe me, we tried nearly everything..... This past February, completely unrelated, I was diagnosed with a prolactin secretingtumor on my pituitary gland (called a prolactinoma). Prolactin is the hormone we producewhen we're pregnant and nursing -- it causes us to produce milk -- and it makes your bodythink it's pregnant, so your body does not produce the other hormones the way it'ssupposed to. My endocrinologist first suspected hypothyroidism (it has similar symptoms),but my blood tests all came back ok, except for my prolacin level. I went on medicine to shrink the tumor in March, which clearly started working about 2weeks later. My tumor-related symptoms (including milk secretion, irregular/non existentperiod, tiredness, no sex drive, unclear thinking) quickly went away. But the relevantpart for you all is that my pain completely went away at that 2 week mark! And by now, mydischarge is minimal, and might even be normal. I'm now suspecting that the reason why my vaginal flora never got back into balance wasb/c my hormonal levels were way off. The main reason why I'm writing this is that I really believe that hormonal levelscould have something to do with some of our pain. I know there are women who report markedimprovement after going off of the pill. So I HIGHLY recommend that we all get our hormonelevels tested, because you never know.
CommentHi Allison!!! I'm glad you posted here. I am also very glad that you are feeling so much better!
CommentJennifer: Yes, my condition has *worsened* with each course of antibiotics. I had a terriblenervous system reaction to the week-long course of Cipro back in June, and the symptomsrepeated again in October when I took a week's worth of Macrobid to cure a legitimatee-coli bladder infection (a culture confirmed e-coli). I have followed your posts withgreat interest and I am sooo happy your I.V. antibiotics cured you! I suspect, however,that my situation is different because I have never suffered a thick, smelly odd-lookingdischarge since I came down with this a year ago. If anything I have been dry-dry-dry,sooo unusual for a gal who has never needed to use lube in her life! :-) As for the sex,my husband has been so understanding and we sadly haven't had sex in quite a while. Iwanted to share that I paid out-of-pocket for a complete stool analysis from Great SmokiesLab in late March to determine if I suffer from yeast overgrowth in my bowel. It came backwith the following info: They recorded a candida yeast overgrowth at a 4+ level (thehighest on their scale). Of course, they don't guarantee your condition will improve oncethat bowel yeast is at a controllable level, but it give me some sort of reassurance thatthe medication I plan to take will be a necessary step towards regaining my health. I haveDEFINATELY taken too many antibiotics in my lifetime for my system, I suspect mybeneficial bacteria has always kept the candida under control, but this strong dose ofKeflex was just too much. You know how they say to continue taking your antibiotics untilthey're finished? Well, that has always worked for me in the past, but for some reasonsomething went seriously wrong this time. I have had my hormone levels tested and havecontinued to have regular periods. I also have never felt pelvic and lower back pain untilI took the Cipro in June. So I just had redness and pain in my vestibule at the onset.Then the Cipro caused me to feel pelvic pain, bladder pain, and lower back pain. In Sept.I began to notice soreness in my joints. In Oct. I came down with the e-coli bladderinfection (during my period, that's never happened before in my life, it's always beentight shorts or sex that caused that problem in the past. After I took the Macrobid I wasa total nervous wreck and had weird nervous spasms and bladder/pelvic pain that persistedfor a month. The redness and pain in my vulva spread during this time. I am not sure if itwas the creme the gyne. prescribed that spread the redness or if it was an after-effect ofthe Macrobid. In March and again earlier this month I experienced pain in my bladder thatsubsided in a week. I also suffered from itchy eyes and itchy ears this pollenseason--something I have never had a problem with before! Could all of this be attributedto yeast overgrowth? Hopefully the oral antifungals will provide me with an answer! Sandee
CommentWell Sandee, Cipro is in the quinolone family, which unfortunately is famous fornervous system reactions. My husband is a crazy spaced out mess on Cipro. Personally Ihave no problem with it. My mother knows someone who took Floxin and got double vision(Floxin is also a quinolone) and it did not go away after she stopped! My discharge was very smelly, but dry and crumbly on the exterior of my vulva, althoughwhen I would have sex it would be like thick white icing all over my husband's penis. Justwanted to make sure I was clear. I seemed to be very "dry" though, because thedischarge was not tenacious/slippery. I too had never had a libido problem before thevulvodynia, never needed lubricant, etc. You know Toth can do yeast cultures too if you are very interested in that. I too on mysecond set of cultures with him came back with that Tolupa something Gabrata yeast (Idon't feel like looking the spelling up). I had just taken mega oral antibiotics beforethat particular culture. By the way Cipro never made my vulvodynia fel better. The ones that helped weredoxycycline, flagyl, augmentin. The ones that did nothing were cipro, zithromax, pen vk,keflex.
CommentSandee, I forgot to ask...that first regimen of Keflex that you feel caused yourvulvodynia, did you take that for a UTI or GYN infection?
CommentHi Frank, I was wondering when your wife tears, where does she tear? Is it in oneparticular area or what? Did you say before that her vagina had been ripped after she gavebirth and that messed her up? Could just tell me a little more of your wife's codition?Thank you Hi Stephanie C. You're probably going to be upset at me for saying this but check itout; I honestly don't think It'll do us any good to send any more Emails to Oprah andwhomever else. No one would ever understand what we're going through and that's just thebottom line. My husband said that what may help bring out the word is if we all gather agroup of people together in our communities and tell them about this disease, then atleast out communities would be aware. And then after meeting with the people in outcommunitity, we can go to another community and spread the word and go from there. But itwon't be all just talk, we can pass them out pamplets and info about this disorder andperhaps one day we can be on the news. I'm goint to try that. I don't know how I'm goingto start off, but I'm going to do that one day because I want to make a difference. I have to let you all know how I'm doing. As you all know, I've had my surgery 16 weeksago. I am doing a whole lot better and I'm starting to feel normal again. I must admit,whenever I eat High oxolates food, that's when the pain come aroung. So I'm just trying toeat right and do this thing the right way. My husband have been of good support. He keepsme in check and makes sure I don't slip and eat the wrong foods. He only wants me to feelgood and painfree. I went to the doctor this Monday for my post appointment and to have mypap done. My doctor have said that I'm doing just fine. He put his tools up in my and hisfingers as well and it didn't really hurt. He told me that I was ready to have sex againand that I should be painfree while doing so. I was very happy to hear that but me and myhusband are going to play it safe and wait a few more months do make love. Then when we doso, I'll let you guys know if all went well. When I was having my pap done, I asked my docto test me for an ATYPICAL yeast infection and he told me that if I had a yeast infectionthat it will show up in the results. I then told him that that would be the results of aregular yeast infection and I wanted to be tested for an ATYPICAL one. He actually blew meoff about it(in a nice way). But I didn't know what to say. I just left the room.
CommentHi Again, Jennifer! Well, I'm ashamed to admit, I began to take the Keflex after I first felt the earlysigns of a bladder infection. I had worn tight shorts two days before, and this has alwaysbeen one of the causes of bladder infections for me in the past. This was not confirmed bya urine culture--I know, DUMB DUMB DUMB. I just trusted my doc that she wouldn't write upsuch a strong prescription. You don't know how many times I have gone over the scenerio inmy mind, but my hubby says I can't torture myself like that. I was fine, no bladder pain,almost right away. But I continued to take the Keflex anyways. My discharge was normal upuntil my period. Everything was fine for the next four days, normal flow, no vulvar pain.Then, as my flow cleared up, that's when I was struck with the red, sore, andoh-so-painful vestibule. Oh, I stayed up for most of the night trying to deal with thepain. I have never experienced vulvar pain like that since then, thankfully! Not to sayit's not uncomfortable, burning, and itchy sometimes... but that pain made it impossiblefor me to sleep. The next few days were when I noticed the lack of normal discharge (whatI have experienced since the onset of puberty). I would be thrilled if I could get a vaginal culture of what I expect to be yeast, butthis hasn't been forthcoming. I live on the West Coast so it would cost a fortune for meto see Dr. Truss (he sounds like a wonderful man, by the way). I've had three culturescome back as normal, but they only waited two days before they told me the results. Thisis such a common experience for so many women! I now believe very deeply in correctlyconfirming any diagnoses with the appropriate, accurate tests. I have learned the hard waywhat can happen to the body if you take any prescription blindly without confirming thedose. I learned that the Keflex dose was *twice* the recommended dose as posted on theInternet site that describes Keflex and it's properties. My theory is that Keflex quicklygot rid of the bacteria in my bladder, and then just went to town on my beneficialbacteria. Of course, this is just a theory, but what else could have happened? Any ideas?Oh, I should add that since I've been taking acidophillus, learning to relax my pelvicmuscles, and taking garlic as well as a good multivitamin I've had a small return of mynormal discharge. I also have a low PH level again (it was up to 8 back in July). Thestool analysis found a satisfactory amount of lactobacilli in my test, but a low level ofe-coli (it reported "no growth") and a less than satisfactory level ofBifidobacteria. I discovered the acidophillus suppliments I'd been taking lacked thisbeneficial bacteria! Sandee
CommentWhen Sandee mentioned Cipro and Macrobicid I think of many times my wife has takenthese medicines for bladder infections. Augmentin and Erythromyicn for various sorethroats and what I call quick cures. I think we set ourselves up for all sorts of problemsby taking these strong anti-biotics they kill the bad and good bacterias. Lynn asked aboutthe nature of the tear my wife suffers, it is always the same spot the six o'clockposition. Her last delivery was more than seven years ago and until just over a year agothere was no problem. Sex was often and intense with no tearing or inflamation. She didhave the itching and occassional burning as I remember. Her Gyn did operate and make a newscar after reattaching some muscle. That did not work and as I have said many times shestill gets the tear. I have to be very gentle and use a certain position to preventdamage. Lovemaking has become a precision event. I think it is more than a coincidencethat the problem started just months after she stopped taking birth control pills, she hadbeen on them for many years. I have read that some ladies think their problems started bytaking them in the first place. So very frustrating to have these theories and not havethem resolved. Someday the proper yeast and hormonal tests will be done, that would takesome of the guessing away. We would still be left with many areas to explore, I found thepost regarding Endocrinology fascinating. I told my wife but unless I can get anEndocrinologist to make a house call that's a dead end. The site seems to be getting busywith more informative posts. I thankyou all for sharing and wish you the best.
CommentOoops, I said Dr. "Truss" instead of Dr. "Toth". Sorry for themix-up! :-) I wanted to add a few more symptoms I have experienced since my antibiotic use--Pimpleson my jawline and a few scattered on my body that I have never been troubled by before (myskin has actually been pretty good since the birth of my three munchkins). This I noticedafter the Keflex use. It is still occuring--WEIRD! Secondly, I have noticed a flushed, redever-so-slight burning sensation (like blushing) on my cheeks when I first wake up in themorning and start moving around (getting the kids ready for school makes me feel like Ineed three sets of hands sometimes! :-) This seems to happen only when my vulva is extrared and especially when I experience the occasional bladder pain. I also have noticedpoppy joints since Sept.--never had that before (I know that sounds strange but it's sucha noticable difference)! Nearly everytime I move POP! POP! POP! (ankles, elbows, knees andweirdest of all--even my fingers and toes), I said to my hubby, "I'm starting tosound like my dad when he goes up the stairs!" I bet this is due to some nutritionaldeficiency (spl?). Anyone know what a person can take or foods that help us have nicefluid joint movements?
CommentLYNN: My doctor who tested me for ATYPICAL YEAST didn't get the results of my test until aweek or two later. (Not like "regular" yeast, where you know before you leavethe office). She told me that ATYPICALS don't show up immediately; they have to"grow." My first two gynecologists never even THOUGHT to check for ATYPICALS.Maybe your doctor is just as ignorant. Find a doctor who won't blow you off, no matter how"nicely" he or she does it. You deserve to be taken seriously.
CommentHey Lynn! I wouldn't dare get upset @ you for sayign that. Whatever efforts I can do toget someone to listen, I will. There are so many people who don't know about Vulvodynia soI just want to speak out on this. I hope everything's going okay. I'm leaving work in afew minutes to get on my plane to Florida. I leave @ 12:15. Wish me luck with my ride.Talk to you in about 5 days. Hope you are feeling okay. Have a good weekend!
CommentTo Stephanie from Canada: I live in Montreal. My doctor's name is Marc Steben (514)765-3600. You can e-mail him at marc.steben@sympatico.ca . I kow that he sees people fromall over the country and the States. If you live in Toronto by any chance, look up Dr. MelPertersiel. He is a GYN who knows a lot about vulvodynia. You need a referral to see him.You can also contact the National Vulvodynia Association (NVA) and tell them where youlive, and they will give you a list of doctors in or near your area that you can consult.Unfortunately there is no Canadian Association of this type but the NVA has still beenhelpful to me. To Jennifer: Did not mean to offend anyone with my comment on the STDs, buthonestly, for me, I would find no comfort in that at all. Sorry! I am also just trying toget at truthful facts like everyone else.
CommentHi there, I'm feeling a little strange right at this moment. This site has reallycought me off guard. Unlike most of the posts that I have read, my gynocologist was ableto identify that I had vestibulitis on our first meeting. That wasn't even why I had goneto see him! I had a cramps everytime I ovulated, and felt dizzy and nauseated right afterand before my period for a total of a full 2 weeks. Anyway, no one has been able to tellme what that was all about. So, my doc gave me EMLA cream, and another kind...i forget totreat the vestibulitis. It cleared up for a couple of months but was still ever soslightly present. It came back full force and I went to see him again. He talked of thisso non-chalantly that i did not realize it was such a debilitating syndrome I thought itwould dissapear! Well, on our second meeting, he told me I should go for a perineoplasty. I just didthat last wednesday, and am at home on my 22nd birthday, healing and... researching. Do Iunderstand that this may just come right back... or even worsen!?! I'm getting married onJuly 7th of this year and well, was hoping for a pleasant evening with my ever so patienthusband. Oh please oh please tell me that there is a chance that this may be over forgood! Or at least for a LONG period of time! I need a break and so does my darling. idon't want to know that I am just starting this journey... Life has been rough enough asit is...sigh...
CommentI'm 27 years old and my life has changed dramatically in the last year. I startedgetting a burning sensation when urinating (I suffered with bladder infections in thepast) so I went to the doctor and of course was put on antibiotics. For some reason theyweren't helping, so she put me on more antibiotics and then more...My pain has graduallygotten worse, sex is uncomfortable and I feel extremely frustrated with my relationship.In the past 7 months I have had a D&C , hysteroscopy, 2 cystoscopies, laparoscopy,leep procedure, and a cone biopsy of the cervix. My cells for some reason have changed onthe cervix and I needed to numberous procedures. After Xmas I noticed a substantialincrease in discharge which was when all the discomfort on the outside of me startinghappening. I can't wear underwear some days, and the time of the month is unbearable. Ihave done extensive research and to this date has now seen 7 doctors in the last year. Iwas also on at least 10 different courses of antibiotics last year. I am convinced thatthis is playing a role in the problem. I am looking into CANDIDA treatment lately becauseI not only have the vaginal symptons, but also many other things seem to getting worse.For example, migranes, muscle aches, fatigue, and Irritable bowel syndrome. I have read anumber or books on CANDIDA and most have amazing recovery stories for vulvodynia. HASANYONE TRIED THIS WITH SUCCESSFUL RESULTS??? PLEASE LET ME KNOW. God bless every women whois suffering with this condition.
CommentI would like to comment that Allison's post is a perfect example of what I have saidmany times..."no disease is an island" all symptoms count. If I can elaborate onher post....Allison and I had been in communication for several months, she had thoughtthat her vulva pain was caused by an anaerobic infection. Finally, a few months into ouremails, she mentioned that she saw milk coming from her breasts, something here husbandhad noticed before, but she had not seen until that day. I, and the other women that weemailed, encouraged her to get that checked right away. This is what led to the finaldiagnosis of a tumor on her pituatory gland, and the hormonal imbalance. Sandee, don't feel stupid for taking the Keflex. I agree it is a good idea to look uprecommended doses before taking meds, because doctors misp |