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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 |