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CommentWelcome all visitors to the sixteenth vulvodynia guestbook. Your continued support of the 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 for quite 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, though without the pain, just the need to go to the toilet all the time? This has been happening to me for the last week and a half - but at the same time my vulvodynia has been getting markedly better. I have no idea if the two are linked and it's very odd. I don't know whether to laugh or cry.
CommentThis web site is a true find! I haven't been officially diagnosised with vulvadonia but from all that I've read, this has to be the answer I've been searching for. Now, my frustration lies in how to find the right Dr. to go to. I live in Maryland - any referrals would truly be welcomed!!
CommentTO WHOEVER ASKED ABOUT CYSTITIS: Yes, I've had bladder problems that have gone along witht the vulvodynia. Stomach sticks out (like your bladder is really full). But, you don't really have to go that much. I've not had the terrible burning that you get with a bladder infection; just the feeling of having to go all the time and the feeling of the bladder just being "irritated." The bladder pain comes and goes. It's not steady, thank God. It seems that taking the calcium supplement helps with this. The one I'm taking is made by PharmAssure. It's called Calcimate.
CommentTO WHOEVER ASKED ABOUT CYSTITIS: Yes, I've had bladder problems that have gone along witht the vulvodynia. Stomach sticks out (like your bladder is really full). But, you don't really have to go that much. I've not had the terrible burning that you get with a bladder infection; just the feeling of having to go all the time and the feeling of the bladder just being "irritated." The bladder pain comes and goes. It's not steady, thank God. It seems that taking the calcium supplement helps with this. The one I'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 been talking about. I noticed that the Pharmassure has Vitamin D as well. I was told that taking too much Vitamin D was not good for you but I never knew why. Can anyone out there explain 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 is fat-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 vulvodynia also have some symptoms of cystitis. One possible link is that both the bladder and the vulva developed from the same tissues in the fetus. My bladder burns occasionally. It all started after I took Flagyl (a powerful antibiotic) several months ago, and I think this medicine damaged my bladder. I got severe bladder burning. Over the months it has gotten better, but still now, I get occasional bladder burning. I've found that foods that aggravate it are nuts and garlic. I also had bladder spasms after Flagyl - I could feel my bladder twitching. I also occasionally have frequency, and I get this when the tissue in front of the urethra gets irritated due to vulvodynia. Some women feel better when they try a low-oxalate diet and calcium citrate supplements.
CommentI appreciate all the information you've provided on your website. I've learned a lot from reading your reports. I am now in search of a doctor in my area who is familiar with this 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 who would be able to help me? Thank you.
CommentHi Catherine... I see Dr. Elizabeth Stewart (GYN in special procedures) in Roxbury (617)541-6646. She also has offices in Burlington and Copley. I also see Holly Herman (Physical Therapist) in Cambridge (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. She also has offices in Burlington and Copley. I also see Holly Herman (Physical Therapist) in Cambridge (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. Not because you have it, but because I have been going through testing for interstitial cystitis with only the symptoms that have been mentioned. I do not have the urgency or frequency or bladder pain associated with IC. My pain is pressure and burning in the urethra,especially at the opening. I do have vulvodynia and have had for 11/2 years. I have not taken the calcium supplement but will do so right away. I would very much like to correspond 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.that I.could.read.about..I.know.there.is.no.known.cause.for.VV but.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 only we 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 you could find it in your heart to read my history & tell me what you think I would greatly appreciate it. When I first started menses at about 14, (now 30) I had trouble inserting tampons. I perservered & was eventually able to use them with some difficulty. When I met my (now) husband at 19 we found that we literally could not have sex. He is very big & so I assumed we were incompatible or I was very small?? (we were both virgins) I did the rounds of thrush treatments etc. After seeing many Doctors one concluded I had a congenital abnormality where my labia minora were fused together leaving only the smallest opening. They suggested stretching with dilators, but this was time-consuming, frustrating, painful & did not really help as I was in love and was eager to make love!! At 22 I had surgery which I think was pretty straight forward. They basically made a cut to separate the labia & stitched them some-how so they did not heal back together. Unfortuntely, my husband & I were still unable to acheive penetration! It felt like he was pushing & tearing and the pain was too excrutiating to explain. Maybe the scar? As were both virgins I suppose we just made-do with alternatives! (sorry if this is too personal!) We were married when I was 23 1/2 (still a virgin!). No wedding night love-making- just crying & frustration. The next day, we managed it with lots of lubricant but it was painful!!! So, I thought maybe it was psychological? but I was not raised religiously so why would the marriage have helped? I put 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 do another op. to cut the muscles. (no thanks) We saw a marriage counsellor a few years ago because 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 to my husband. I would be aroused etc but then as soon as we tried penetration it would cause us 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 almost unbearable. By the end it is a little more comfortable but still agony. By about 15mins afterwards it is not too bad, with a little discomfort the following day, at the site of the tear after toileting. We have a beautiful little girl who is 10 mths old. Luckily we became pregnant after only 3 mths of trying because it was a chore! When we were trying to get pregnant I would often swell up at the site of the tear, too which hasn't happened (in the very few times!) since. We hoped that after the delivery this "size incompatibility" 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 not stretch because of the scar tissue) & something agonising happening to my tail bone sex is still unbearable. Also, for about a mth after delivery my clitoris felt like it had been damaged- just the friction from standing up against my underwear was horrible! I also had pre-ecclampsia & a retained placenta- could this be linked? What I noticed was some of these symptons are talked about & also some of the entries talking about scar tissue and other injuries (my tail bone was excruitiating after delivery but no-one could help- one Gyno said it was probably dislocated but offered no solution- it is still tender to sit down but no-where near as bad). Also, just by trial & error over the years I have found that I need to use hypo-allergenic toilet paper & no soap products as these make me itchy & tender. I thought it was an allergy as I have sensitive skin on my face? 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 still v.painful upon entry but not too bad during & much better afterwards. We are trying for another baby & I am worried this will put a strain on our marriage. Is this the answer to what I thought was scar tissue?? Do you think I have vulvodynia or vestibulitis?? Also, I did a search in a search engine for Aus. only to see if there was help 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 no loss of control- in fact the opposite, I will feel strange or sick & realise I need to go- does anyone know if this could be to do with my tailbone & nerves?? Has anyone else suffered this with this complaint? Now, I only have pain during intercouse not day-to-day. Thank you for taking the time to read this very long entry. Sorry I took up so much 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 have seen no less than 11 GP's, 2 Gynocologists, and 2 Professors at clinics, I have had 2 operations and an unbelievable amount of medication only to be told, "there is nothing more we can do for you", I personally cannot accept this. Since these comments I have moved from my home state of Tasmania to Mainland Australia where I am now living in Sydney, in search of some sort of help. It has become unbearable to both myself and my fiance. We have been together for 6 years now, and for the 3 years we have been sexually active it has never been normal. This is beginning to have a serious affect on my life , as our wedding in November approaches he has become unsure that he can go through life with the little sexual activity I can provide him, and I dont blame him, I am frustrated. I am so upset, this syndrome may end up ruining my marriage before it has begun. I have also conducted a search on the internet for Australian support groups and or recommended Doctors and came up with none. Could someone please help me to find a good Gynocologist in Sydney, Australia so I can try and continue my life with some normality, I would even be happy if I could sit down, or go to the toilet without pain let alone have sex. Looking forward to whatever help you can recommend, I am happy to go anywhere and speak to anyone, I have private medical insurance, and I just want some relief. Please help. Regards Renee
CommentTo the Australia women, There was an Australian Doctor here in the U.S. that recommended laser surgery. He treated vulvodynia. I was a patient of his and he is a very caring doctor. He had some trouble with his practice here, because some women said he made them worse and others said that he made sexual advances to them. I don't believe the sexual stuff at all! He never claimed that he could make us 100% better, it was mostly experimentation, but at least he was trying very hard to help!. Anyway, he went back to Australia, so you might use him as a resource. Here is the last address I know of: Dr Richard Reid's listed practice address is Level 7 Park House 187 Macquarie Street Sydney 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 any experience with vulvodynia? I don't even know for sure that that's what I have, but many of your circumstances certainly sound familiar. And my current gynecologist shows no interest 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/or believes that my pain is real would be a big step forward!! Thank you so much for any info you can provide.
CommentAnother question: I've been on Depo-Provera injections quarterly for birth control for eight years. Has anyone heard of a connection between this and vulvodynia? I could go off it 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 for eight years. Has anyone heard of a connection between this and vulvodynia? I could go off it 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. Your symptoms began long after you took it for the first time. I'm wondering if you have taken any antibiotics recently. An eleven day course of Keflex is what did me in. I have had this conditionsince last May and have yet to find a caring, knowledgable doctor to diagnose me correctly. I don't want to know I have "vulvodynia"! I want to know what is causing it, and what steps I can take to cure it! I refuse to use any more cremes or pop any more pills until the organism has been correctly identified.
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CommentRegarding the bladder burning--I didn't experience that until I took a course of Cipro for a supposed e-coli "infection" back in June and then it went away after about a week. However, the redness and pain/burning in my vulva remained. Then I developed an EXTREMELY 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 is never as bad as a full-blown infection caused by e-coli. I'm convinced there's something in there causing this discomfort, and I'm almost certain it's a type of yeast that has attached itself to not only my vulva but now my bladder lining. I will not have the answers though until I locate a knowledgable doctor who makes DIAGNOSTIC TESTING a priority before beginning any treatments.
Commentthis is for sallymut@msn.com I am 42 years old and have had vulvodynia symptoms and treatments since 1992. I, too, have had terrible problems with cystitis lately, and the urgency 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 symptoms are relatively calm lately, after 8 years of pain, although sexual relations are not as sporadic as they used to be for fear of pain..I had the mini vulvectomy and it really did help. 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 have bothersome symptoms, and I really want to feel normal again. These problems started In Oct.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 at work. Any suggestions??? I have recently started the calciium tablets, and the low-oxalate diet is next. Please respond if you have any ideas..
CommentThis is for Patty: I do feel there is a connection between hormones and vulvadynia, but my view is the opposite of what you are considering. I have been given the hormone patch and 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 hormone imbalance and this hormone therapy has helped a great deal.
CommentFor those suffering from cystitis symptoms: Have any of you been tested for intersitial cystitis? I would recommend going to one of the IC sites on the web and read about the symptoms and some of the treatments. To Bridget: I am currently on Elmiron and Atarax for IC treatment. I have been taking the meds for 5 months with little effect. That is why I doubt I have IC. I see a urologist at the KU Med Center who sees many women with both vulvodynia and IC. His name is Dr. Tomas Greibling and I liked his approach and I was confident he knew what he was talking about. Jean
CommentTo the lady who asked about Fibromyalgia. My sister-inlaw has suffered for several years 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 Vulvular Vestibulitis and Vulvodynia as I have read is with Vulvodynia there is visible tissue damage such as tearing. Vestibulitis is pain associated with the Vestibule( vulva or entrance) or the vagina. Don't let a Doctor tell you it is all in your head , both of these illness have been well established. My wife's Gyn has said that in thirty years he has not seen a similar problem with vulvular tears. Just because your Gyn is not familar with these conditions does not mean they do not exist. My wife went for a pap test today and asked about the hormone connection at my request. Her Gyn thought about it then agreed to check her Estrogen level. I can't understand why these doctors are not more agressive in doing blood work specifically hormone levels. They don't hesitate giving birth control pills for years, surely there is a chance of some connection here. To some of the ladies new to the site, check some of the prior guestbooks they are a wealth of information. You would be amazed at the similar treatments advised and medications used. My wife has used Ciprol and Macrobicid to mention just a few. Someday the connection will be made as to the cause of both these illnesses. Best of luck to you all.
CommentFrank, I have always heard there is no blood test to determine if you have fibromyalgia. I have heard you have to be mapped. What kind of blood test is this? If you have 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 the days go on. The last time I updated you all was 3 weeks ago. I mentioned that the top left side was hurting a little. Well I must say that it barely hurts anymore. It just tingles sometime but that's because my stitches are discolving. I can feel my muscles have tighten up(which my doctor informed me about). He said that I can't have sex until 5 weeks after the surgery(which is tommorow, but I'm not sexualy active right now anyway)He said that when I do have sex, I'll have to loosen up the muscles again as they were before the surgery. He said it'll hurt the first couple times because that's where the surgery was performed and I'll have to get my muscles loose all over again. But I just want everyone to know that I'm fine. If anyone is out here in Arizona and you're thinking about having the surgery, my doctor is in Tucson. If you're interesting in knowing his name and where he practice, then just message me. I'll post back next week to inform you all of my condition. Take care everyone. Goodnight!
CommentTo Diana: So much for third party information, I knew my sister-Inlaw suffers with fibromyalgia so I asked my wife about it. I was assured there was blood testing to confirm the illness. You are of course right and I am wrong. I deeply apologize for the misinformation. I did however research several sites on the Web. I learned that there are diagnostic guidelines used to label a sufferer. I also learned that treatment includes drugs that boost the serotonin levels . Drugs such as Elivil, which is also given to sufferers of Vulvodynia. Once again I am sorry for assuming my information was correct and not checking it out more thoroughly. Thanks for questioning it.
CommentHello, My name is Stephanie, and this is my first time seeing the vulvodynia website. I have been a sufferer of vulvodynia for about six months now and now my doctor says that I also have vulvar vestibulitis. I started out with my regular MD who thought I was suffering from a bladder or urinary tract infection in September. Then, I went to another doctor that said I had a bacterial infection (of course I had one of those before, and I knew what it felt like). After that I still had the same uncontrollable burning. Next, I went to my gyn twice before she said there is nothing I can do for you because you are in perfect health. Well, what a thing to say to someone when you know you are experiencing something you never have before. On my own, I decided to see a specialist that dealt in urology, pelvic support problems, and biofeedback. When I called for my appointment, the nurse knew immediately what I was talking about and mentioned that I might have a problem called "vulvodynia". Of course, I didn't know what this was, but the nurse assured me that they say many patients that had the same problem. Little did I know that there was no cure for it of how long it took for some of the symptoms to "go away". I was devastated. I first started using a cream that was a compound called Cromolyn 12% and Elavil which I was very uncomfortable using because I didn't think I was depressed (although depression has kicked it. I am now up to 50mg of Elavil a night, and I am 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 got worse. Now, I am using Estrace that doesn't seem to work either. I will be going back to my doctor on Monday to see what else I can try. They have recently visited the University of Wisconsin that has done a study on vulvodynia. My doctor also gave me the low oxalate diet which I have not yet to go on because I have been so discouraged from everything else. Has anyone had any success w/this diet? When I first logged on to this website, all I could do was cry because for some reason I thought I was the only one out there suffering from this that didn't have a cure. I have only been married for nine months, but my 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, but to everyone out there who deals w/this everyday I do feel your pain, and I will continue to pray and ask God to help each and everyone one of us who has this problem. It feels so good to just get some of this off my chest. So far today, I have been free of pain and burning which I thank God for. If any of you have anything that you have tried that helps this burning, I would appreciate the advice. My job requires prolonged sitting, and I know when I'm not sitting the burning seems to "go away". I have tried standing up more everyday which makes me look like an idiot, but I do it anyway. Well, I'm sorry this is so long, it just feels so good to vent. Thanks to everyone who has shared information on 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 the last guestbook you will get a history lesson on these two diseases. My wife has the Vulvodynia which involves tears to the vulva. Many of the ladies here including my wife have used countless topical and vaginal creams including the Estrace. There doesn't seem to be any miracle cure , the Doctors try what they feel might give relief including surgery. While you may have similar symptoms everyone is different. Some ladies have success with surgery and many do not . Try not to rush into anything. I try to be supportive to my wife but there are times when I slip up. When I catch myself I think what would happen if I had the problem, it puts things into perspective. Best of luck.By the way 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" http://www.medicalcelibatesnetwork.com. Thank you for visiting our site
CommentTo Katrina and Renee, You sound like you need some good advice so I suggest you contact National Vulvadynia Association at http://www.nva.org or The Vulvar Pain Foundation at htpp//www.vulvarpainfoundation.org/ I know nothing personally of Doctor Reid apart from the fact hes been heavily ctiticized in the vulvar pain forum.Laser surgery is generally not recommended and before you decide to let him treat 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 using to live with Vulvodynia.I have suffered with for 3 years now and not until late last year was I diagnosed with Vulvodynia. I was releived to know what it was but not at all happy to know there was no cure! My husband has been completly supportive and is patient in waiting between times of intimany for me to heal up. I have joined a health work out shop where we do aerobics and work out with wieghts ect. I feel it helps me in the vulvodynia area. I go three times a week and I have been getting into shape besides. I am 45 and now is time when you begin to feel things falling apart if your not in shape and this affliction has caused me to take a real serious look at my physical condition and I was out of shape and had gained 30 some odd pounds. I am currently taking vitamines and eating better. this is a list of things recommended me to take by a women who works at the natural food store where I shop. I explained to her my affliction and she was very understanding and helped me understand how important it was for me to take care of my skin from the inside out as well as the outside. She advised me to take 1000mg of vitE and 1300mg Super Primrose a day. Also to drink plenty of water which I do anyway. I Also take Calcium magnesium citrate name bran by Solar. I take two of those a day. When I feel ichy in that area I use Lotrisone cream twice a day and after I have intercourse I use a diaper rash ointment as funny as that may sound it helps to calm the area down and protects it when I urinate after sex, it can sting when you urinate after sex. I wash with warm water and Aveedo bar, dry well then add the diaper rash ointment. Oh, the name of the cream is Diaper-Care by Weleda. I bought it in the natural food store when I was there. I buy different creams and ointments to try some work others do not but this one seems to work for me. It has Zinc oxide 12%, water,almond oil,lanolin, hydrolyzed beeswax,extracts of calendula and chamomile flowers. I am always apply vitE and have also mixed the vitE and the Primrose together. My OBGYN has me taking AMITRIPTYLINE 10mg a night. It helped to break the pain cycle and I can say it is under contol. It got so bad I thought it would drive me out of my mind. I know why they call it the burning bush!! I am still on the look out for anything that will help me live with this affliction but I am thankful that at least it is under control and my husband is a patient and loving husband. I have also realized some very important things while suffering with this. How wonderful my husband is and how important it is to take care of my body.How we take these things for granted so easily. Now they are very important to me and have caused me to appreciate them and to take better care. Thanks for your patients in reading this. If you have any questions about 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 loo all the time, but I wonder in fact if the problem is associated with my vulvodynia. I am going back to the docs tomorrow (as the antibiotics don't seem to be doing anything) so I shall ask, and I will pass on any useful info I get. In the meantime, can I mention a wonderful cream that's really been helping me in the past few weeks. Its Bach's Rescue Cream by the same people who make the Bach's Flower Remedies. It's incredibly soothing and healing - the best thing I have used!
CommentROCK ON VULVAS
CommentAm fortunate to have found this web site. A referrel to a compassionate GYN in the Lakeland/Tampa, Fl. area would be wonderful. I simply must change doctors and find someone who can help my situation. Received info from the NVA today, but they need a $35 fee for a referral, and I simply cannot do that right now. Our ins. co. folded, and has left us with many 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 for Gyns in Fl.. Not much luck. There is a doctor referral site which also has a disease search of course neither Vulvodynia or Vulvular Vestibulitis are listed. This may not be much in the way of advise but I would ask any potential Gyn you are considering if He or She has treated for these illnesses. My wife's Gyn has been in practice for thirty years and never saw it until my wife. Don't hesitate in asking questions before you committ to a office visit. Most of all don't let any doctor tell you this is in your head. The ladies here like yourself can attest to that. Most doctors will prescribe some type of cream either with or without hormones, a course of anti-fungal medicine and elivil to relieve the nerve inflamation. Read as many of the other guestbook posts as you can they will give you 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 have decided to invest in the biofeedback unit that Dr. Glazer has on this site. Anyone used it before? Did anyone had success with it? My VV comes and goes in severity. I can go for long 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 best of marriages. My husband is very supportive, but I know that if he were to ever leave me no one would ever want to be with me again. Can't say that I would blame them. I don't think my husband would ever do that, but I have to tell you one day I was feeling particulary blue and I asked him, if he had meet me and knew I had this would he have married 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, I won't because I don't think this is IC or anything like that. So I am going to put my money on Dr. Glazer, so if anyone has anything to say to save me the money, do it now. If not 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 the posts. My wife suffers from the Vulvodynia which has tearing as a symptom. I've read that many folks believe there may be nerve impingement that causes V.V., some do pelvic floor exercises. This may not be of help but I have read for years that doing Kegel exercises can help with bladder control problems, aside from any help with this the exercises may relieve tension in muscles. There is a relaxation exercise in which you tense then relax different muscle groups in doing so you consciously relax muscles you may not be aware were even tensed. Might be worth a try. I don't know if it's a guy thing but I'm sometimes too 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't go back. I don't have bladder control issues. My problem with my bladder is the spasms and general pain. I have done the kegels and they are certainly great exercises it is just that they don't help with spasms. I do think this is a nerve issue and that is why I just wonder if it is possible that Dr. Glazer's biofeed back may just work. I must say it is a large sum of money to just throw away. However, if it only helped just 30% I would be delighted. Thanks for your response I hope all the guys married to women out there would be 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 contributed to, if not caused my VVS. Has anyone else heard of this happening? This all started about 6 months after starting on the pill. Nothing else had changed in my situation that I can think of, I wasn't on any medications or anything, then after about 6 months it started and it was gradual so it seemed like the longer I took the pill the worse I got. I have been on the "pill" now for 4 years, I stopped taking them a week ago, I know that I feel different I just don't know how.(Maybe I'm subconsciously hoping for a miracle) Could you please email me if you have had an experience you think may have been caused 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. Gordon Davis in Phoenix a few times. Everyone says he's good, and I'm just wondering why you didn't go to him. Is there something I should know? Should I see one of the GYNs in Tucson? I didn't think much of Dr. Davis--he reccommended the surgery to me after my 2nd visit. Do you have vestibulitis or vulvodynia? Did you have pain just during intercourse or 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 not been 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 fact that I pulled my insides several times in the last month. I am hoping that the vaginal biopsy will let me know whether or not I have endometriosis in my vaginal area so that we can have that removed. I'm hoping for a laparoscopy real soon. In addition to the vulvodynia and the endometriosis I also have a hormone condition called Polycystic Ovarian Syndrome. I'm writing to ask if there's anyone else out there that has all 3 of these conditions that I do. It would help me a lot to be able to talk to someone with all of these conditions to find out how they cope from day to day with this especially on the bad days. Also, I was just curious to find out if anyone with vulvodynia ever had success with Pain Management. I'm just curious b/c I am wondering if things have changed to a degree about the interest of gyn problems among Pain Management drs. The reason for this curiosity is b/c all the research that I've done especially of the drs in my area none of them will touch gyn problems. If I were to be evaluated by a Pain Management dr I would have to try even harder to find someone that would let me keep the pain medication combination that I have that works to help me function when I'm having a real bad flare up of my vulvodynia. The reason that I must keep what I've been taking is not only b/c it works but b/c I can't do any thing else that Pain Management offers. I have other health issues that keep me from taking other kinds of meds, as well as issues that isn't totally health 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 step is. 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 am currently seeing a dermatologist in Manhattan, NYC who has a different approach and theory about vulvodynia/vestibulitis, and it seems to be working. She sees 50-60 women a week with 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 2 weeks, then 3 weeks of boric acid capsules. I am currently on the 3rd week of the boric acid and I am greatly improved. I have also been able to have intercourse again, for the first time in months! And it was much better. I would encourage anyone who has been diagnosed with vestibulitis or vulvodynia to try this treatment, so far it has definitely worked for me. Especially if you believe this was brought on by taking antibiotics. I myself got this after a 5 week course of Terazol, Flagyl, Zithromax,and then Cleocin, all to cure a stubborn "yeast infection" that I had developed. I am going back to the dermatologist next week, and I think she may prescribe an estrogen cream as the last part 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 this information someone else may get better. I am convinced by reading all these posts that part of this illness is caused by a hormonal imbalance, which is what the last part of the treatment addresses. Best wishes to everyone!
CommentHi Rebbeca, Thanks for the message. To answer your question, the only reason why I didn't go see Dr Gordon is because he is not contracted with my medical insurance. And Dr Hatch in Tucson is. So I travel 2 hours to go see him. I have heard that Dr Gordon Davis is a good Dr. Dr Hatch recommended him but I told Dr Hatch that he's not contracted with my insurance and that's why I don't go visit him. About my surgery, I had my surgery 6 weeks ago(this comming Friday) and I feel so so so much better. But I still have about 3 more 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(my savior). I had vestibulitis and i would hurt every one in a while. I have not had sex in 1 1/2 years. I would just be in pain just because. But now since the surgery, I can definitely feel a change for the better. Message me back if you want to know more. I'd also like to say that I've tried the vanisoap for the very first time last night and it worked just fine for me.
CommentMy name is Tracy, I am 34 years old, mother of 2 and married. I have been suffering from migraines since i was 11, I am allergic to caffeine and asprin so many of the medications on the market i can't take. will i be stuck with these headaches the rest of my life? Is there anything that can get rid of them besides demeral? Please help, this happens 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 the Atlanta, Georgia or Memphis, Tennessee area? If so, I would be more than happy for you to message me back. Thank you.
Commenthow good it feels to find this site...thank you for being here. i have been sufferring for about 8 months now with VV. it has been very tramatic. i am 23 years old and i fear that i will never be able to be in a sexual relationship with anyone. this past weekend i went to the cleveland clinic and saw a gynocologist who informed me that i had VV. he has put me on estrace, and i am trying the low oxalate diet as well as the citracal pills. i am a vegetarian and am having a hard time finding foods i can eat now considering the low oxalate diet restricts most of the veggies i normally eat. has anyone out there gone on this diet as a vegetarian? if so, please share...i have so many questions about specific foods 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? i can't imagine the pain of delivery having it. alright, be well everyone...adding my love and support... MC
CommentMy doctor wants me to take the colposcapy test because of a few abnormal cells found in the past 3 or 4 pap smears. I want to know what this test is looking for. I searched the web for colposcapy and this web site was the only hit I received. I am not having any abnormal 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 more problems. I thought I was going thru menopause. I'm 43. Anyways, what is this test used for? Thanks so much! Darlene
Commenti can't get into the chat room. can you tell me what i'm doing wrong. i would love to talk 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 is for cervical cancer after a abnormal pap test. A special microscope is used to view the cervix. Best of luck with the test.
CommentI first posted to this site back on 4/99. This is my third time posting here. I am hoping that someone has a positive story that she can share with me. I have suffered from vestibulitis since 1998. I was able to contain some of the pain. I suffer only on the left side 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. It only helps me sleep now. I am now 25 and I also have fibromyalgia (since I was 18). I started physical therapy to help deal with the tightness and pain and to help the pelvic muscles. I now have pain in my abdomen (for almost one year) and I think it is because I have both medical conditions. Like a lot of you that have posted, my stomach is swelling badly. 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 I would like to know if anyone else has been on this. All of this has put a terrible strain on my life and I am not able to be intimate with the person I love. My doctor has not mentioned surgery, but now I am wondering if that is the only option if physical therapy does not work. I also wanted to tell Deborah (who posted on 3/5), that if she wants some more info on this and fibromyalgia, please email me. I also wanted to tell Ken that I think it is great that he is understanding. The best thing to do is to make sure that she is 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 to still know that I am not alone. I live in Chicago and if anyone needs any info on doctors or wants some more information, please let me know.
CommentTo Holly: The pain in your abdomen and the swelling sounds like an ovarian cyst. I don't want to alarm you, but I would get it checked out as soon as possible. There is a procedure called an intravaginal ultrasound that should be able to tell your doctor if an ovarian cyst is causing your problem. I don't want to alarm you, but if it is a cyst there is a slight chance it could turn malignant. So don't put it off -- the ultrasound is painless.
CommentHolly, I have used EMLA for a year but have only used it on non mucous membrane skin. I have vulvodynia but not VV. A lot of my pain is in the pubic hair. EMLA seems to really calm everything down for several hours. I have had not side affects that I am aware of. I maybe use it 2 times per week. I also suffer from interstitial cystitis. It seems like most 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) have difficulty "getting in the mood?" It is so depressing. Ever since I have had this (1 year ) I am so sensitive to contact down there that I just don't seem to desire to be 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, and as far as being intimate, it takes a lot to get the desire. It is very frustrating. Just take your time and relaxing is the key. As my doctor says, make sure you use plenty of lube! Also, for those of you out there who have burning for prolonged sitting, I have been using a "donut". The "donut" is used for women who have episiotomies and are trying to get the pressure off. I sit a lot @ work, and it has helped me tremendously.
CommentLM or anyone else that can tell me, what is lidocaine, and what does it do? I'm sort of new @ this. My doctor has given me several different things, but I have never heard of this. Thanks for any information.
CommentLidocaine is a topical pain killer. Check out the " WedMD " site and you can research many drugs. Precautions include making sure you are not allergic to this medicine and 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 cysts were normal and both my primary care doctor and my gynocologist said they would go away. A lot of the swelling is from elavil and the muscle pain I think is related to vestibulitis and 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 have been 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 have not tried to be intimate yet, so I have no idea if it helps in that regard. I use it at least 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 cysts were normal and both my primary care doctor and my gynocologist said they would go away. A lot of the swelling is from elavil and the muscle pain I think is related to vestibulitis and 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 have been 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 have not tried to be intimate yet, so I have no idea if it helps in that regard. I use it at least 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. The onset started following an initial herpes outbreak I had. Ever since, intercourse has been nearly impossible. I'm getting married, to the man I have been with since before this horrible syndrome started, in one month. He is quite supportive and I feel very lucky to have a man that can deal with this. This disease has caused major depression in my life. I started using paxil one year ago. However, my doctor is urging that I ween myself off now to try and deal "on my own." The paxil helped my depression-didn't help the pain. During the entire year I was on paxil I never visited this site, I felt content even though I have this disabling disease. Now that I am off of the paxil...I feel I cannot handle it very well. All the time wanting to return to an anti-deppressant. I don't know what to do. I really want to be happy on my wedding day. It seems my frustration and sadness in regards to this disease are just taking me over. I would like to praise Frank for his pro-active stance regarding his wifes vulvodynia. One question, I am in the Salt Lake 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 abnormal cells, they essentially do another test to look closer at the cells. Durning the colposcopy, they douse your cervix with iodine. The iodine dyes the areas of the abnormal cells so that the doctor can see them easier. He/She then looks through a microscope at the cells and takes a sample of anything that looks abnormal. But the sample isn't just a swab. 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 is basically the beginnings of cervical cancer. It is the cells changing (which I guess they assume 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. If it 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 they use an electrical loop current to scrape/burn out the abnormal cells. It is a walk-in procedure, takes about a month to 6 weeks to heal. Although, not to scare you, just being honest, 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 caused by the STD Human Papillova Virus (HPV) which is genital warts. You may never have any symptoms other than displaysia. They say that basically if you are sexually active, you probably have HPV. They can test you by way of the Thin Prep Test (not a regular pap smear) to find out what strand of HPV you have. There are over 30 different strands. Some are considered high risk for cancer, some are not. Unfortuneately for me, I followed my old doctor blindly. I have since been tested for HPV and I have a strand that is not considered high risk for cancer. Which is good, except that I had the LEEP done without really 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, so if 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 your vulvodynia. Thanks so much for sharing that. I read the following on the Web last year and I must admit I though the woman was confusing vulvodynia with thrush! I'm sorry I was so judgemental now as I think perhaps your doctor and this woman may have hit on something we can all try. Here's what I read: "I have been suffering from Vulvodynia for almost two years, most of that time without even knowing what to call it. My worst symptoms were unbearable itching in the vestibular area, raised painful patches and the inability to have intercourse. After going through the usual torment of ignorant, unsympathetic doctors and 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 the expensive Sporanox pills for some six months. However, less than a month ago, a girlfriend suggested a "folk remedy" to me that 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 every night. I was VERY skeptical, but had nothing to lose. Within ONE week, my itching had subsided significantly; less than a month later, it hardly bothers me at all. This -- after more than a year of waking with blood under my nails from scratching all night. But the best news is: I saw my vulvodynia specialist this week and he was absolutely dumbfounded 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 NO sign 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 it will do for people who only have burning and not also itching, but there appears to be no side effects from this whatsoever -- and it's CHEAP -- so I would really recommend trying it." I'm definitely going to try it! I like a lot of woman developed vulvodynia after a bad bout of thrush and being as boric acid has been used for thrush for years there has got to be a link somewhere, I suspect.
CommentTo the lady from London, good for you. You are making the best of a difficult situation. I agree with your advise to not suffer in silence, any man worth being with wants to know if you are in pain. Certainly any man worth staying with will work with you to reach a resolution. I would like to talk on the " Boric Acid " cure. When my wife and I saw the Expert on Vulvodynia he prescribed boric acid suppositories to clear up a yeast infection. We had them made at a compounding pharmacy and they did clear up the yeast. My wife has used them twice since the first time. I did ask two different pharacists if I could make them myself out of gelatin capsules and boric acid, I was told they not only contain boric acid of pharaceutical grade but also other ingredients to buffer and control dissolving. I don't know if this was truthful or not but I don't take chances with health. Regardless of the yeast my wife still gets recurrent tears to the vulva. There doesn't seem to be a cure available at this time. Good luck to all and be wary of cures.
CommentI am new with VV, diagnosed a month or so ago, but have had it for at least three years. I am not happy with my GYN. Does anyone have a referral in the Central Texas area for a GYN/Doctor that is knowledgable in this area.
CommentIt is so upsetting for me to read the posts from hundreds (thousands?) of women suffering like I did for so long. I am 36 years old and until five years ago I suffered from chronic vulvar pain (burning, itching, swelling, etc). I went to a *lot* of doctors and heard many say that they "didn't know what else they could do for me". I think many of them actually thought I had a mental problem. I finally found one doctor who agreed to put me on oral antifungal medication even though she couldn't see yeast in my wet prep. She said that sometimes people were allergic to the yeast and/or yeast by-products and that she had seen people with obvious yeast infection symptoms, but no evidence on the wet prep. Well, after trying Diflucan with minimal results, we tried Lamisil. It started working within a few months and I ended up taking it for a couple of years (with constant liver tests and no liver damage). I also went off my birth control pills 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 of carbs. I have been yeast free and *almost* pain free for about five years. When I first was cured of yeast we had trouble levelling my vaginal PH and I would bounce back and forth between yeast and bacterial infections. Finally we got it under control and now I occasionally 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 (less carbs to feed the yeast), the antifungal (lamisil is strong and kills different kinds of yeast), and going off the birth control pills helped. I also stopped using any types of soaps or detergents with perfumes. I hope my writing this will help someone else in the same situation. My heart goes out to you because I know how much you are suffering. My marriage has lasted through this and I 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 a few steps. I am including the entire regimen so that if you want to try it, you can follow what 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 2 weeks (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 and causing problems, and the diflucan you need to take with the Cleocin so that you don't get a 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 Acid Vaginal Capsules (which you insert) . The prescription she gave me for these is as follows: Boric Acid Vaginal Capsules 600 mgs QOD x 30 days Take them 1 capsule every other day before bedtime for 30 days.You may have to call a few different drug stores to get these; some drug stores will not have them- be persistent! I am on the last week of the boric acid, and this treatment has worked wonders. After these 2 treatments, you may or may not need estrogen cream. They can test your estrogen levels. As I said before, I would recommend anyone who has been diagnosed with vestibulitis or vulvodynia to try it. You may have something lingering in your vagina that does NOT show up under a microscope. To Frank...has your wife had her estrogen levels tested yet? Just wondered. Good luck to everyone, and keep trying!
CommentI have been working with the Vulvar Pain Foundation (see links) for 4 years now and have been working directly with Dr. Solomons over the last year. I had much success with the low-oxalate diet, calcium citrate, NAG, L-Arganine and Ox-Absorb (avail. through the Vitaline Corp. and L&M vitamins). This last month I completed an intensive treatment with Dr. Solomons newest discovery HTO and am pleased to say my pain is gone. I still maintain all the above-mentioned precautions as well as physical precautions ie loose clothes, no irritants/perfumed soaps etc... I cannot recommend enough the work of the VPF. They can be reached through the link on this 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 weeks ago 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 that everything was normal. I think that was really fast and question the results. I asked my wife to call the office and get a copy of the test so that we could make a comparission with future blood work. She had her gallbladder removed last week and is on the mend but I know she just will not make that call. My wife is a smart, hardworking, wonderful wife and mom but she is just not into pursuing this matter. The more I push for her to be involved the more she backs away. You would have to understand her upbringing to know what makes her tick. I will continue to check the site and make occasional suggestions but for the sake of peace in our marriage I cannot be too pushy. Thanks for the concern and my best to you all.
CommentPara Patricia Ramos. Como verás soy española.Desgraciadamente no se inglés. Te he escrito un e-mail.Yo también sufro vulvodinia desde hace ocho años. He aprendido mucho en 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 también sufro 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 regimes and drugs but I don't think half the things I have read about on this site exist on the UK, which is very frustrating - I can't even get empty capsules to make the boric acid treatment up. If anyone knows of any really good drugs we could ask for over here I would be very grateful. I am very interested to read about the possible yeast connection, but again I don't think we can get daily Diflucan. I may be wrong. Any advice would be most welcome.
CommentHello Everyone, I have been reading all your entries for the past few weeks and am heartbroken and scared, yet encouraged to see so many others suffering from this condition. I have had vulvodynia 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 had surgery november of 99 which was about 65% effective. I am no longer in the relationship that I was in before I was diagnosed and somewhat believe my devestation from having this contributed to the destruction of the relationship, and part of me believes and fears the lack of success of my surgery contributed to his ending the relationship. I have since moved and am seeing a new doctor in Milwaukee, WI who says I have the skin condition Lichens Planus which was never mentioned by the two "specialists" I saw in Chicago. I hope so much that her therapy will put an end to this suffering as I can't imagine living with this and strongly fear never finding someone who will love me with this and accept me. I am only 28 and want desperately to marry and have a normal relationship. My question is to anyone who is single..how do you deal with having this and dating? Do you feel obligated to tell the person and at what point in the relationship? I feel like if I wait too long they will feel I "trapped" them into something. I know now I have a false sense of security not being sexually active but am scared that when/if it happens again i will once again be sucked back into the depression of having to live 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 for listening. Lauran
CommentLauran, a lot of us understand how you feel. This seems to be a constant battle. I was married only for 3 months before I started to have vulvodynia. At first my husband seemed to 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 to not be getting better. It was very hard for him @ first, but now he "seems" to be okay. Every time I ask him does he want to leave, he says no. He has always told me that he is here for the long haul. I am so happy that I found someone like him. You will be able to find that special someone who is able to "deal" with this. Just be open 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 over there? If so, and your doctor wants you on this regimen, ask him or her to write you a prescription for the boric acid inserts. A pharmacist should have access to the capsules so 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 sells them: http://www.herbsnmore.com/gelatincapsules.html There's probably many more places over the Internet where you can find them. I just did a 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 physical and psychological limitations make us unique. There are men who would love to be with a kind ,caring ,interesting lady . Develop other likes and interests that make you a happy person. We are conditioned to have sex on the brain and it is a driving force but there are 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 first posted 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 another website too, and, between both - I was getting 100's of messages daily! Anyway, I have had either, Pudendal Neuralgia or Vulvodynia since 1993. I am 35 years old now, and, after many doctor's one Specialist diagnosed me w/ the Pudendal Neuralgia, and, tried everything to help me for several years - lastly I did home injections of Alpha-inerferon, which made me very sick, and, did not help at all! I then went to another Specilist at Johns Hopkins in Baltimore, MD., and, he informed me that I did NOT have Pudendal Neuralgia, but, it was in 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 I was told my skin in the vulva area is way too thin - part of the problem - and steroid creams will just cause it to become even thinner. I was using it daily - 2 x, and then testosterone w/ lanolin base 2 x weekly, and, I think a estrogen cream 2 x weekly. They didn't help at all. I stopped the steroid that did help due to thinning of the skin. I was not happy w/ the doctor I was seeing there - terrible bed-side manner, and while I am very much overweight by 100 lbs, all he harped about was my needing to lose weight, but no offer of any help in that area. I have gone with no Gyn. at all for about 2 years. My problem 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 at Johns Hopkins in Baltimore, MD. Neither was able to help me. I have many other medical problems at this time, and, am "Disability" due to them. I also have Fibromyalgia. Don't know if it is related to the Vulvodynia or from the trauma of a car accident in 1997? I also have Chronic Fatigue Syndrome, arthritis,herniated disc's in back and neck, Hypogonadism - no period unless I take the pill or another type of estrogen replacement. 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, understanding and supportive husband passed away last August of yr.2000. I can't even begin to tell you all how this has devestated me! It was very sudden - he had heart disease. We knew something was wrong, but, he wouldn't go to a doctor. He was only 38 yrs. old. Without him, I am so lost and lonely! I don't want anyone else at this point in my life, but,if I ever 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 all these problems? Unlike my hubby whom I was already married to when all this started. He was so good to me! I'm sorry this is so long. I didn't intend it to be, but, I am truly, desperately in need 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 other type meds I need. I wish all the best to all of you who are suffering with this terrible problem. I have a whole lot of different things to share in ref. to things that could help that I've tried, but,I won't go on anymore in this post. If anyone is intersted, please feel free to Email me. And - if anyone knows of a decent doctor in my area - please let me know! 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 are dealing with many difficult issues. I have posted on this site many times but I don't think I ever mentioned a car accident that left me with herniated discs. While I cannot compare to your other pain I know the constant headaches and neck pain I endure. I have gained more than thirty pounds because of it and although I am not very overweight I understand how the excess weight makes the injury more painful. Doctors can't understand the pain unless they have suffered the injury so they push pain killers and tell you to loose weight. My only advise and I hope you are not offended is that you prioritize a course of action. Make up a list of how to best get your life back while dealing with all these 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 other alternatives. You must be overwhelmed and starting anything at this point will be difficult, 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 and a half of these years I thought I was the only person on the planet with this strange condition, but I couldn't really believe it. I have had a 5 year long relationship which ended a few years ago, probably partly because of the vulvodynia (although at the time I didn't know what it was called). I went for a while where I felt like you do and I was almost actually happy to be alone as I felt safe somehow. Then, 2 years ago, I met my husband and I knew he was the right one. I told him right from the start and right away he was 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 to tell you these great men exist! If anyone runs away after you tell them about the vulvodynia and the pain, they weren't worth it. Don't sell yourself short because of vulvodynia. 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 this site about 2.5 years ago. After a pap test that showed some abnormal cells the gyn I was seeing at the time (mine had retired) gave me antibodtics. Of course the infection cleared and my nest pap test was clear. In the mean time I developed vulvadynia. For the first six to eight months I was treated for everything under the sun. My gyn told me that the pain was in my head, because nothing showed up in tests that were taken. I finally got to another Dr. that sent me to University of Michigan to see Dr. Haefner. She and her staff were the first ones to say that this is a real diease and not in my head. I take Elavil and hormone replacement and I do feel much better. I have developed other nerve pain problems in the last two years and I think that they are related. I now have pain in my lower back (no injury) and doen my legs to my feet. I also have to take 50 mg. of Vioxx for pain in my joints. I believe that these things are all related and that vulvadynia is one the related dieases that is part of something much bigger going on. I also believe that if there is no injury or skin diease that it is a neruo problem, meaning that the messages that are being sent up the spinal column are not be read correctly by the pain center in the brain. Of course I amnot a doctor, but I have been reading and trying to help myself with this diease. The doctors at U of M are wonderful and are working to find a cure or at least a way to deal with this problem. I know it hard to remain hopeful, but I urge you to keep seeking help and to reply on a higher source for comfort. I find prayer is very comforting to me. Terry
CommentTO TERRY: Well, reading your message has led me to even MORE questions! I have had vulvodynia since 1994 (at 28 years old). Actually, that was when my problems started: spent a year and a half trying to get a diagnosis, and FINALLY (after many, many doctors visits and useless medications) was diagnosed with an ATYPICAL yeast infection. I have had the bladder irritation, low back pain, etc. The pains come and go, with no apparent pattern to stress in my life, what I've eaten, etc. I just can't figure it out, but not for lack of trying! But, within the past few months, I have developed the same thing you're talking about: a low back pain (different from what I've been used to getting) and nerve pains down 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't have a clue as to what THIS is all about, but I have so many symptoms now, it's hard to know 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 they are the same as mine. I'm wondering if I'm now going into fibromyalgia (since tingling and numbness 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 am going to try it I just wanted to hear from just one person that it has helped. I guess if it helped you may not be posting here anymore. But, I can hope that this will be seen by someone 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 much information in this current guestbook. I just want to briefly reiterate some information that 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 very informative), 4/13/00 - in the 11 th guestbook...6/27/00 (13th guestbook)....10/9/00(14th)...and 1/15/01, 1/18/01, 1/29/01 all in the 15th guestbook. In the first couple of posts I told 'my story' so I won't 'bore' you with all that again...In summary 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 somehow between their vulvar pain and maybe an underlying case of nerve damage somewhere. I hurt my hip 5 months before suffering from a (was it really?) a yeast infection and from that point on (7 years ago) I have had vulvar burning and / or itching. It took ME over 5 years to figure out the CONNECTION between hurting my hip and all this **** I have suffered through. 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 and nerves that are being affected in that same area - is where my pain is coming from. She performs myofascial release...Now for my chiropractor: The main reason for this post. He performs Active Release Technique..He diagnosed that my genitofemoral nerve is entrapped in a mass of adhesions (in my hip area down toward my lower abdomen toward my pubic bone...to give you an idea of where this is...) His 'job' by doing ART in this area is to literally 'release' the nerve by working through all the adhesions that have formed over the years. This is all mentioned and discussed in detail in my listed posts above...('Mary' first mentioned ART in her post and upon seeing a possible connection and similarity with her story and mine; that's what made me decide to persue it. So, here I am...I am not pain free all of the time. BUT I am pain free for several days and/or weeks at a time...When it does flare up, my head (thus far) has been so tortured by this-I very easily go into 'depressed mode'...but when it's gone for lengths of a time at a time - it is wonderful. (When it does 'kick in' it is not for as long as it used to be and not as severe...)It is working. I am optimistic (now, because I don't hurt)...and I try to be when I do hurt...The best thing is that my chiro. is ALWAYS optomistic...he believes that he will make this 'go away' or at least when it does flare up it will be controlled. I have gone on and on...I just hope this info. can help someone like it helped me. By the way, my chiro had never treated anyone with vulvar pain so yes, it was awkward to say the least, to approach a complete stranger with my story (But after what I had already been through...Who really cares?) He is a caring person and believed from the very beginning that 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/alignment checked out? From what I understand, we could have 'hurt' ourselves in the past and not even have thought anything about it...and if hurt enough internally...one thing leads to another. The other thing is that I, too, was very focused and/or 'caught up' (for the lack of a better word) in the whole 'bacterial thing'...I was being 'treated' and 'treated' for bacteria and/or yeast after bacteria and/or yeast (Then with all the crap I was taking and/or putting down there, who knows how much more I added to the aggravated skin??? And for what appears now to be for nothing)....I know you all already know this: (after what we've been through): but we do all have to have a normal amount of bacteria and/or yeast to 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 I haven't been on one antibiotic?- and NOTHING goes on me topically down there? It was hard for me to get past this "I know I have (another) infection thing..." when I would continue to have burning (and redness too.) But it wasn't and hasn't been true. I don'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 track with 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 you for listening.
CommentI hesitantly, but with some hope, write this entry. I have suffered with vulvadynia for almost 4 years. My pain is burning in the labia and sometimes internally. My pain also moves from place to place in the vulvar area. I understand this is normal for this type of disorder. I have no infections, itching or anything that resembles anything abnormal in the vulvar area other than burningl. After four years, I have found some relief. It has evolved slowly and I still have burning 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 mouth daily. I also use lorazepam as needed. The thing that has made the biggest difference is the hormones as far as fast results. I have been on the combipatch for over 1 year with little relief, but once I added the 0.5 mgs of estradiol by mouth, I experienced a real improvement. I believe that all of my meds 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 I have had too many high oxalate foods), I take 1/4 tsp of baking soda in a tall glass of water. 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 TREATED WITH 25 MG TOFRANIL AT BED TIME SINCE 2NIGHTS AGO.ALL THE PAIN AND BURNING IS BACK .PLEASE GIVE ME SOME ADVICE. IAM TOO SCARED TOGO BACK TO DOC TO HERE THE CONDITION IS GETTING WORSE 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 times when the pains really flare up. But, you really SHOULD go to your doctor, just to be sure you 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 having one RIGHT NOW), I kind of freak a bit, but I try to remind myself that stress and worry will only make things worse. WORRY is NOT good for ANYONE! I know that sometimes this is easier said than done, BELIEVE ME! But, if there's one thing that I've learned from this experience, it's how connected things in your body are: I mean, things that you wouldn't think 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 vulvar vestibulitis 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're pretty sure the man has solid potential as a "keeper." Frankly, I wish I had waited until I was married to have sex at all, because in retrospect, everything prior was superficial and childish in comparisin. That said, were I you, I would handle any dates who want sex early on by informing them you want to build a relationship first...no need to explain anything about your condition...and then after you know him well and have a better level of trust and understanding you could fill in the blanks. PLEASE don't worry about someone feeling like you "trapped" him; a man who really loves you will love more than just your ability to have intercourse with him. You shouldn't even consider marrying someone whose attitude is like that...that attitude would probably have a negative impact on other parts of the relationship, anyway. However, I do think that before you accept an engagement, you need to inform your potential husband about your condition; it's only fair for him to know what to expect...after all, it will be his marriage, too. If you take the time to build a relationship and use your best judgement in picking a husband, it is ENTIRELY possible to get through this. I'd be lying to you if I said you'll never feel somewhat depressed and inadequate, but those bouts shouldn't dominate your life...there's so much more! God has a purpose for each of our lives...and looking for that purpose rather than getting hung up on how we're inadequate makes dealing with 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 with similar problems...I have recently been diagnosed with vulvar vestibulitis after roughly 15 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 of this condition, I am both excited and saddened to discover that there are others dealing with the same challenges and frustrations. Here is a recommendation for anyone in the WASHINGTON, DC AREA: Dr. Stanley Marinoff at Three Washington Circle (just across from GWU Hospital). He is director of the Center for Vulvovaginal Disorders and is involved witth the the NVA (see link to their web site). Best of luck and God bless you all who are struggling with this problem.
CommentTo Debra, Dominique, Frank and Stephanie, Thanks so much for your responses to my question and words of encouragement. I hope I can find a partner as loving and accepting as yours. I really appreciate your response Debra, I think it makes good sense and is the approach I plan on taking. It helps me to hear that others out there are dealing with this in their marriage without it having a detrimental effect. thanks again! Lauran
CommentI have only heard from one person regarding the success of the biofeed back. Please contact 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 you have taken has lost its effects. I had vulvodynia once before, but I've never taken any medications for it. I only put vanicream on mu vulva every night. It has no steroids, no irritants in it. It's a moisturizing cream for irritated skin. I will suggest you go try that. I've been vulvodynia free for over 6 months now. If you're having flare ups, that means you have vestibulitis. I can't offer much advice on that. I had vestibulits, but I had 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 small independent ones ones not Boots though!) I couldn't get gelatin capsules either, but as well as the site Deborah suggested, there is one in the UK - www.baldwins.co.uk who do packs of a hundred for a few pounds which I am using at the mo. I do think the yeast connection thing is a huge possibility for some of us, if not all - my vulvodynia started with severe thrush and a few weeks into having the (undiagniosed by my doc) thrush I got the most awful rash on the inside of my legs. It only comes back now if I shave my bikini line which makes me wonder if there is yeast lurking the area which only displays itself when the area is vulnerable after shaving? The other thing I have been using and is the most soothing cream I have ever found is Bach's Rescue Remedy Cream (from Boots or most health shops). We can't get the Vanicream Lynn from the US often recommends, so I really would suggest trying this - it's brilliant! I have seen a real improvement in symptoms in the last few weeks and I am sure a lot of this is down to the cream. I am also trying the boric acid treatment now as I feel it may work for me. The other things which reduced the pain considerably for me is capsaicin cream - if you can get past the burning you get for the first week or so, I would really recommend it. I have had vulvodynia for two years but in the last month I have really started to think there is light at the end of the tunnel and I think the capsaicin (a natural one from the States not the one my doc gave me which didn't agree with my skin!) and the Bach cream have been a lot to do with it. I did try amytriptiline and sertraline for a while so you could ask your doc for them - they do help a lot of people. To all the women who are suffering and contribute to this site - thanks for sharing your stories and your suggestions for what helps. And to the men who post often too - thanks for being so supportive to your partners. I developed vulvodynia just two months after meeting the guy I am now married to and so for nearly all our time together he has had to live through this with me - and has been, and still is, wonderfully tender and supportive with me, especially at those times when it all gets too much. We'd barely got to know each other intimately before the vulvodynia started. To the ladies who wonder about finding a chap while you have vulvodynia - if they have a problem with your pain, then they're the problem! As this site shows, there are many men who are understanding of the anguish of vulvodynia. If a new or potential partner can't or won't understand your pain, then they're probably not the sort of guy you'd want to get to know any better anyway.
CommentI wanted to tell about a treatment that has helped me recently. i have had vulvodynia/vetibulitis for six years now and i have tried everything, even surgery. My doctor prescribed me EMLA cream, which is a numbing cream. i rub it on the areas that hurt about a half hour before sex and it really makes sex less painful (it numbs the areas). i don't know much about the long term effects of using the cream routinely, but it really helps me to be able to have sex. When I don't use the cream, sex is very painful. When i have really bad days, i will use it also and it helps decrease the pain so that i can function. I hope this information helps someone.
CommentHello ladies, like many of you my wife has used anti-biotics and developed yeast infections as a side effect. I know some of you feel there is a connection to Vulvodynia and maybe you are right . I just remembered that a few months after stopping birth control pills 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 any answers. There has got to be some common cause. Thankyou.
CommentLynn or anyone else that can answer, Does vanicream have to be prescribed by a doctor or is it over the counter? Thanks!!!
CommentHello to all, I'm writing in to give what is hopefully a success story. I have written in here a couple of times. First it was to say that I'm a 24 yr. old suffering like a lot of 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. I suffered four years going through treatments that did absolutely nothing for me. To make a long story short, after seeing her for a while we realized that just medication would not work. I agreed to have a surgery where she would remove the skin that the skin disease destroyed, 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, must also a lot of faith because I knew that I was running out of options. I went under the surgery 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 to healing. I'm now at my 3 mo. mark. My skin is almost completely healed. I no longer have bulging glands. I used to be able to feel them through my clothing. I can honestly say that I think I'll will be close to be 100% pain free. I can be examined without writhing in pain. I'm just finishing dialator therapy because my muscles contracted after the surgery. I only have 2 more wks. to go and then I can attempt intimacy. I'm planning to marry this year, and I can not think of any greater gift. My therapy does not just end with the surgery, now that I'm aware of the lichen sclerosis I know when I might have a flare 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 the light 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. It began as it seems to so often with a bout of thrush. Months later I visited a doctor to be told I had a 'skin crack'. Things got worse but mostly doctors have said they cannot see anything. 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 sort of sex life! My problems also began a few months after I started taking the pill, dianette, which I still take because I have fairly bad skin in the form of mild acne. I stopped taking the pill 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 the vestibulitis. 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 my bladder. After various negative tests I stopped drinking caffeine, and I don't know whether it was coincidence but it began to get better, and eventually over a couple of years disappeared. The problem was always worse later in the day and getting to sleep feeling you urgently needed the loo was a nightmare. In some ways it was worse than the vetibulitis because it was always there. I don't suffer constant pain, but I can feel that its not good down there! Some times I get what can only be described as a prickliness around the vagina in general. I used to have problems wearing certain trousers, but this doesn't seem too bad now. Some years ago as a student I did ha |
