There sure are a lot of us out there. First - thank you. Now, I'm 25, andI started having problems in high school with a discharge and infections that wouldn't clear up. When I was in college, I met the man who is now my husband. When we started having sex (he was my first and only) I suffered from mild(in comparison to now) pain. Initially, I foud relief. THIS MAY HELP SOME OF YOU - My gyn said that my vaginal ph was off, and prescribed Boric Acid vaginal suppositories. That helped for a while, but it was not permanent. Then my gyn tested me for HPV, and that was positive. I have no external signs of it, but she applied an acid treatment thinking that it might help. It didn't. So, now, 5 years later, I'm very frustrated. The most recent attempts to clear this up have been Amitriptilyn 50mgs (hasn't helped), and Lidocaine, which has made sex somewhat bearable, but it still hurts a lot during, and I pay for it the next day or 2. I think I'm going to give the low oxalate diet a try, but I encourage everyone to keep this site up to date. Maybe some doctor somewhere can figure this out. Just for background, let me add I have Crohn's Disease (similar to IBS) and I take Pentasa for that. I also have Spondilolysis(sp?), which is a back problem. When I was 12 I fell down some steps and got a hair line fracture in my spine. Also, my mother suffered from endometriosis. I'll be back for updates, and if I find a solution, I'll surely post it.

I am 40 and have had vulvodynia for the past 3 years. I have just spoken with my doctor asking her to up my elavil dose. She has also prescribed lidocaine. Hope this helps. I am about ready to jump out of my skin. Not only is the vaginal area affected, but also the rectal area, the inside of my thighs and now is also feels like my waist area. I can wait to get home and put on something that isn't tight or binding. Even sitting is uncomfortable because of the pressure on the rectal area. I wish someone would come up with a cure soon.

This is is a great idea! I'm 19 and I've had vulvodynia for several years. My symptoms include mostly itching (intense to slightly annoying). I sometimes have pain in that area but mostly itching. I have also had many reoccuring yeast infections, but now I am taking acidopholous and so far, I've had no more. Fortunately, my vulvodynia isn't too bad right now. I'm taking 3 caps of calcium citrate each day and am moderately following the low oxilate diet. I used to follow it faithfully, but now if I get a reaction, I know what I ate and can avoid it if don't want to deal with the irritation afterwards. For years I've had this problem, none of my doctors could figure it out. This January, I was lucky enough to find a competent gynacologist. She has been a major help for me. I used to think I was the only one with this problem. I greatley sympathise with other vulvodynia patients and can understand your pain and frusteration. If anyone would like to chat with me, please do. I may have some tips on things to do.

Just been diagnosed with vulvodynia. Thanks for this website, at least I have some idea of where to start with treatment. I've noticed the same problems in many. I also had yeast infections and sacroillitis. There must be something to this nerve damage. I hope everyone keeps posting their efforts at treatment and their results. Please add me to your list.

Dear Dr. Glazer,

Thank you for establishing this website! It is wonderful! Please add my e-mail address to your list. I have been a VP sufferer since 1984 and have tried a plethora of treatment options with little or no improvements in my condition. I have recently learned of your work with biofeedback and I am actively searching for a Physical Therapist in my area (Portland, Oregon) who would be qualified to offer treatment.

Thank you again for your work in this field. You are appreciated more than you know.

OOPS! I commented earlier, but put my e-mail down wrong. Here's the correct address.

Hi Howard, Its Cindy Nemser. As you may remember I have burning mouth syndrome, levator ani and now burning, tingling and aching in my feet. I find this web site interesting but since I do not have vulvodynia I am looking for answers to my other problems. To the person whose mother has burning mouth. Contact me as cnemser@worldnet. att. net and I'll tell you what I know but I haven't found the cure.

Cindy Nemser

I just found this web site after my Mom found Vulvadynia in an article and mailed it to me. When I read the article, I felt total relief, that maybe--finally--someone knows what's wrong with me! After reading through this web site, I could just cry! So many of the postings I've read sound just like me! I'm so very glad this web site was started, and Doctor, Cheers to you!

I'm 26 years old and my problem started about six years ago. I began by having a problem with frequent yeast infections. I would notice a terrible burning during intercourse, although being young, I was often able to "block the pain" long enough to reach orgasm. However, immediately after, a burning would begin that was so bad I often would put ice cubes or cold cans of soda between my legs.

I went to doctor after doctor, being treated for yeast infections. I don't remember when, but eventually it seemed that I wasn't even noticing the signs of the yeast infections, except the burning I felt during intercourse. I kept assuming that it was a yeast infection, but often I would be told by my doctor that the yeast infection was "very slight," "hardly even noticable," and if I weren't complaining of symptoms "I wouldn't even bother treating you!" I thought I was loosing my mind! In fact, one doctor even told me that this WAS a condition of my mind, and that perhaps I should spend some time "exploring myself with my own fingers" to get used to things being inside of me! (This suggestion came after I mentioned that I've never been comfortable with tampons or anything else besides my lover inside of me.) Needless to say, I left this doctor for yet another--number 6 I think now.

I have been married just a year, but have lived with my husband for four years now. The problem has progressed gradually in the last four years, and now I am lucky to have intercourse once a month. Although, I can't remeber the last time it wasn't painful.

I haven't had pain in other areas of my life, yet, besdies intercourse, and can only imagine how awful it must be to hurt all the time. For me, the hardest thing has been the loss of intamacy between myself and my new husband. I'm lucky that he's very understanding and caring, and I try to do "specail" things for him when I can't be sexual myself. The problem is that even though sex itself is painful, my desires are still strong, and when I do things for him, it is often very frustrating for me. Most importantly, I miss the kissing and petting that just isn't the same or as frequent without regular intercourse.

I, like many, was diagnosed with the HPV virus at the age of eighteen. The yeast infections began to get more common after that, but didn't seem to get really bad until about two years later. Then I seemed to bounce back and forth between yeast and bacterial infections. Even now, I really don't have symptoms of a yeast infection, but intercourse is painful--so I make an appointment, and usually they find some slight signs of yeast. However, I'm not sure that this little bit of yeast would even be an issue other than painful intercourse.

For the yeast, I've tried Acidophilus (sp?), eating yogurt, insurting yogurt, Diflucan, Teryzol, Diflucan and Teryzol together, treating my husband, abstaining, going off the pill, watching the sugar in my diet, and believe it or not, even microwaving my underwear! I've been tested for Diabetes and AIDS, both negative, and yet the yeast seems to keep coming back. But again, I still wonder if perhaps I will always have some yeast present, but it's not the yeast causing me so much discomfort. Maybe it's Vulvadynia.

My next Doctor appointment is in two days, and I've taken lots of notes from this guest book to bring up with my Doctor. I do have to say that at least now I know that (1) this is a REAL problem, not in my head, and that (2) that I'M NOT ALONE ! I'm so thankful for this web site, and would be open to E-mail from anyone who wants to talk!

Dr. Glazer, thank you for a wonderful website. It is comforting to know I am not alone in suffering from vulvodynia. I was diagnosed four years ago and treated with Elavil with quite a bit of success, however, after the birth of my daughter 17 months ago my symptoms have returned to the extreme especially affecting my bladder and urinary discomfort. I am especially interested in hearing more information or communicating with someone who is also suffering from what I have been told is severe "spastic bladder" related to vulvadynia. I am absolutely miserable at this point and just yesterday was put back on Elavil. I hope the treatment will again be successful in helping my "spastic bladder". I have also suffered chronic vulva burning for at least 10 years (which Elavil did help). I would also be willing to talk with anyone interested in discussing pregnancy and vulvodynia - I have a healthy 17 month old daughter - yes, vaginal delivery is possible! But I am desperate at this point to discuss with someone how the bladder and urinary tract all relate to vulvodynia - this is a new aspect of the disease for me!

I commented earlier but am new at the Internet and flip flopped my signaure and E-mail addess. I will give it another try. Also please add my name and address to your ListServer. Thank you.

Dr. Glazer, thank you for a wonderful website. It is comforting to know I am not alone in suffering from vulvodynia. I was diagnosed four years ago and treated with Elavil with quite a bit of success, however, after the birth of my daughter 17 months ago my symptoms have returned to the extreme especially affecting my bladder and urinary discomfort. I am especially interested in hearing more information or communicating with someone who is also suffering from what I have been told is severe "spastic bladder" related to vulvadynia. I am absolutely miserable at this point and just yesterday was put back on Elavil. I hope the treatment will again be successful in helping my "spastic bladder". I have also suffered chronic vulva burning for at least 10 years (which Elavil did help). I would also be willing to talk with anyone interested in discussing pregnancy and vulvodynia - I have a healthy 17 month old daughter - yes, vaginal delivery is possible! But I am desperate at this point to discuss with someone how the bladder and urinary tract all relate to vulvodynia - this is a new aspect of the disease for me!

I am a subscriber to the Vulvodynia Listserv but have not had anything from them since yesterday so am posting here for anyone who moight happen to look here.

I have been suffering from the symptoms of vulvar vestibulitis for approximately four years. I have had a history of yeast infections since I was a little girl. Therefore I thought that my years of chronic pain were attributed to a chronic yeast infection. I have seen countless doctors including OB/GYN's, Dermatologists, and even Holistic doctors. All of these doctors have come to different conclusions but have never made a firm diagnosis and have never made me feel like they wanted to help me. I have tried several topical steroid creams and antibotics but nothing has fully cured the swelling, itching, or the deep seeded pain. Unlike many of the other entries that I have read on this website, I have not experienced a back injury. I do have a weak back. But I am sure that I can strenghten that with mild exercise. Thank God for my wonderful supportive friends and family. Especially the support of my husband. Our sex life has been " zero" for the past six months because the pain is so excrusiating. Sometimes I cring during the pain of urinating or even bathing. I actually thought that I was being punished for something. I had several scares of cancer, AIDS and Herpes. But was in a very low risk catagory for all of those things due to life style. Now I have been dealing with a general practitioner whom has been GUESSING for two years about my condition. He does not seems to care about the pain and suffering that I have endured.Even so I have followed every suggestion that he has made. Including going through countless examinations with the taking of smears and cultures, several unsuccessful topical medications,and two painful biopsies with him. And still no answers or diagnosis. Yes, I am frustrated. Especailly with the fact that he is relectant to refer me out to a specialist. I really would like to know of any specialists in my area that could help. If anyone knows of any in Southern California, primarily in the Orange County area, please let me know. Or if anyone knows of any medications that I should suggest to my doctor or recipes for low oxalate foods, please e-mail me at ednshell@juno.com. In the meantime, I will research my symptoms and take an aggressive approach to healing myself both physicially and emotionally. Thank you for your helpful website.

I was just recently told there is a name for my complaint called volvodynia. I am going to see a vulva specialist in a week and a half to see what ideas he has. I have had pain with intercourse since I dated my now husband, 22 years ago, with it getting progressively worse. We reached the point 2 years ago of having no intercourse sex, with helped a great deal. But last month the burning and stinging came without sex, just happens especially when sitting. I am glad to have found this sight and confirm the diagnosis is not just a placebo from my doctor. It gives me some comfort to know I am not alone in this. Thanks for providing this service.

Please add me to your list server.

I think your website is a great help to all us vulvodynia sufferers. The only thing is that it can be quite depressing to know that the chances of it going away aren't that good. I have had vulvodynia for 6 years and was recently diagnosed when my friend gave me an article from a woman's magazine about a condition which were the same symptoms that I was suffering from. I had gone to many doctors and had many treatments but was never given a diagnosis. My pain like many others, started after a bout of bladder infections and yeast infections. After switching doctors, I found out I was being treated for yeast infections when I didn't even have any. At first there was just an itchy feeling, like I had an infection and sex was still good. Eventually the pain became burning and hard to deal with. I am now seeing a doctor in Manhattan who specializes in this. I am on elavil, atarax and estrace. I have some relief at times but I never feel "normal". I am 33 years old and single. I take good care of myself physically and have a good social life, but because of this problem I am reluctant to be in an intimate relationship. Sometimes sex can be okay but most of the time the pain can last for a week after. Right now I feel okay but my vaginal ph balance is off, I have a high acid level which causes additional burning. I am using baking soda baths for relief. Dr. Glazer, I really want to know if people ever get cured of this condition. It seems like it will never go away. I have heard about biofeedback and may try this soon. Thanks.

I am 28 years old and I have been recently diagnosed with VVS. I have been taking Elavil (75 mg), Claritin, Calcium citrate, topical creams, and sitz baths (also, I stopped taking birth control pills on the adive of my physician). I have just started physical therapy, biofeedback, and dialator therapy. I am hoping that I will find some relief using this treatment plan. I am also trying to start a low oxalate diet. Prior to being diagnosed I sought treatment for burning upon intercourse and itching (sporadic). I was sent to a specialist a few years ago who told me that I had a jagged hymen ring and so I did Kegel exercises to try to smooth it back out. I did have some relief with this treatment when I resumed intercourse. After that I still had some burning and pain that usually occurred during the week before and the week after my periods. I also had dryness, which was what I thought may have been causing the pain/burning symptoms and which I thought may have been caused by using birth control pill for many years. In October of 1997 I asked my gyn about my symptoms. For a few years I just continued to have intercourse despite the burning and irritation I was experiencing. I am hoping this treatment approach works!! I have an extremely supportive fiancee who is very understanding and who has helped me in so many ways in dealing with this ordeal. Since my diagnosis in October I was referred to a physician in Baltimore who has his own clinic related to vulvar pain sydrome. I like his approach thus far, but I do not feel that he listens or understands my needs and my fiancee's needs. He told me that I have a severe case of VVS and that I will most likely need to have surgery. After reading some of the comments written by others who have undergone surgery, I am very apprehensive and am looking at surgery as a last resort. So far he says that I haven't improved, but I see small improvements. I would like to find a new physician in the Baltimore, MD area, who works with vulvadynia patients. I feel as if my current physician had me pegged as someone from day one as someone who would need surgery. I would like to find a physician who will take the time to listen and try to understand my story and experiences. If anyone knows of a good physician in the Baltimore area, please e-mail me at scarswell@mailexcite.com. This site has been extremely helpful and supportive. At least I know that there are other women out there who can understand what I am going through. Please add me to your listserver.

Please add me to your listserve. I am a psychotherapist/biofeedback certified (BCIA) who did some work with pelvic feedback around 8 yrs ago with a few patients using Dantac disposable electrodes via BioComp. Had great results. I am thinking of getting back into this biofeedback specialty since I have recently begun working with a female intern and have an interested physician. Please let me know of some basic litereature and basic training courses. THank you.

Nice site. Not a current area of practice, just following up on John Perry's comments in PsyUsa.

I am 27 years old and have suffered from vulvular vestibulitis for almost 2-1/2 years. The onset occurred in September of 1995 when I had laser surgery on my cervix and vulva.

I've had vulvular pain ever since and the doctor who did the surgery said it wasn't from that. I've tried various creams, diflucan, calcium citrate and Elavil. The Elavil side effects became too much. The doctors make me feel like it's all in my head because they don't physically see anything wrong. I'm getting very frustrated and discouraged. I was told by a specialist that I saw in Philadelphia that it was nerve damage cause by the surgery and I also believe that. So my question is if anyone has had nerve block surgery. I've heard of it, but from reading letters on-line, no one has mentioned it. Any info would be greatly appreciated.

I am currently off of the Elavil and I am applying Vitamin E topically every night and will soon be trying the 35% H2O2, but more suggestions would be great. Thanks.

Browsing...I've been having burning and pain for some time and my dr, said it could be this illness, but maybe not. Am treating a third infection now--(this time, staph) so hopefully the problems will clear up soon. I have rheumatoid arthritis and am on a great deal of meds so yeast is also a problem here and there and getting a diagnosis for all of this has taken 6 months! (Not great for a "newlywed.)

Hello. First of all I would like to thank everyone and Dr. Glazer for contributing to this wonderful site. I can't begin to tell you how much it has helped me in terms of keeping my sanity. I am 23 years old and have been suffering with this terrible and debilitating situation. I believe it may have come about when I had a terrible allergic rection to a spermicide. Since then I have had buring upon urination, painful and buring intercourse, and vaginal dryness. I have left many good doctors because they could not help me and basically told me it was all in my head. I actally began to think that, I mean how could 5 different doctors not find anything!!!! Well after this site and finding a doctor to confirm my situation, I know know I am not crazy and alone. However, I still have not been able to find any relief. My current doctor is trying however. After 4 years, it is really beginning to take a toll on my mental health as well as my intimate relationship with my finace. Although, he is just wonderful about this whole ordeal. I'm lucky to have someone so supportive. I still find myself crying myself to sleep at night because I feel so helpless and alone. It makes you question yourself as a woman too. I always wonder and hope this will not have any harm on my plans for starting a family and having healthy childen. All these things are constantly preoccuping my mind. I'm 23 yeras old and forgot what it is to enjoy the pleasures of making love to my fiance. I'm always worried about the pain I will exdperience afterwards. How romantic is it to have to run and put ice between your legs after being intimate? Pretty sad huh? If I only had one wish, it would be to enjoy sex- something that comes natural to most people my age. I feel so robbed and alone. If anyone has any suggestions on how to beat this and send it back fron where it came from I would gratly aprecite it. One day I would lile to feel "NORMAL" again!!!

I'm 44 and have had vulvar pain (usually restricted to a small area dorsal to the vaginal opening) for the past 2 years. I have tried topical steroids (several types), hormone cream, Xylocaine, aloe vera gel, vitamin e oil, acupuncture, and physical therapy. Sometimes the pain goes away for a few months, but I can't seem to connect it with anything. Five years ago I was diagnosed with Reflex Sympathetic Dystrophy which affected both knees and thighs. I currently feel I have it mostly under control due to a combination of acupuncture and exercise. I would like to hear from people who have been diagnosed with both RSD and Vulvadynia/Vestibulitis. Also would like to hear from people who are trying calcium citrate, which so far has not worked for me. How much are you taking and do you feel the timing of when you take it are important? Also, would like to hear from people about the pro's and con's of taking baths.

I am living on Vancouver Island, and finding that doctors in this area do NOT understand what is wrong with me. I can't seem to get them to understand the agony I am in, and since I have other medical problems in which they want me to walk more, etc., and this just aggravates the problem they say "I'm unco-operative, and just don't want to get well, and am using this just as an excuse". I also have bronchitis, asthmatic, and am on oxygen and nebulizers, and since I was in a car accident which caused a fractured leg and ankle, I require more walking for my ankle AND FOR MY BREATHING PROBLEMS. I also need to stop smoking NOW... And yes, I admit that I'm using the vulvodynia as an excuse as far as the smoking is concerned, but I get SO ANGRY being nagged about = not walking (which aggravates); still smoking (which helps me keep from loosing my temper with everyone); and a family that does NOT understand what is happening with me.

I have been to Vancouver General Hospital, Women's Pavillion and they don't see anything, say tests are negative (blood, urine, bowel, colin, x-rays, etc); therefore don't know anything that is wrong.

I am currently on 50mg of Luvox and 20 mg. of ampicillin/ once a day; along with 30 mg. of Buspirone, Zanax 4x daily, to alleviate panic/anxiety attacks; which appear to be brought on by the fear of the vulvodynia getting worse.

The only relief I get is by lying down, or lying in a LazyBoy type chair, where I am sitting on the lower spine.

PLEASE, any help.... I can travel with oxygen tanks to any destination that would understand there is a problem. I am 59 years old, accident in 1994, resulting from husband heart attack (he's 60).

I am 24 years old and was searching the internet when I found this site. I was diagnosed with vulvadynia after a series of yeast infections from taking too many antibiotics. I also injured my tailbone when I was young. Living with this chronic pain has been rough and quite secretive, but I am learning to speak out about it. I am feeling so much better than when I was first diagnosed, I am also on amtripilene and citrical. I follow a low oxalate diet most of the time with occasional "cheating." I have also had a dramatic change with accupuncture. My doctor mixed my treatments with a chinese herb tea and some herbal douche. I felt much better after a few treatments with this doctor. I really apperciate this site and would like to be on the server list. Thanks for helping others open up with this chronic illness, it is hard to talk about with people who do not have the problem.

What a wonderful surprise to find this site! I am looking for information on Dr. Clive Solomon's high oxylate diet. Anyone know where I can find it? Thank you and thank you (!!!) for this site!

Lisa

I am exhaustged trying to find a medical practitioner who specializes in Vulvodynia located on Long Island. My 75 year old mother sufferes from this disease and we really need to find someone who can treat her in our area. If you can tell me where I can find out this info. please e-mail me. Your trouble would be most appreciated.

I am interested in Doctor's in the Chicagoland area whoare working in this area.

I recently found this web site and have been checking in on a regular basis to see how others are doing. What a great way for those who are suffering to communicate. I only wish it would have been around years ago. I have suffered for about 4 years, and fortunatly am in a place where I only have occasional flare ups from time to time when I experience major stress. Reading over all of these comments I get goose bumps. Unless you have lived through this strange kind of pain, it can be very hard to understand. I don't think I have read about one drug here that my doctor did not try with me. Creams, anti depressants, Paxil, Elavil, herbs, Citrical, Clive's low oxylate diet, biofeed back, Kegals, etc, etc. The list goes on and on. After one very intense year and no relief, my doctor finally admitted me to the hospital to remove my bartholin gland. Many people are skeptical about this treatment, but I was considered a 9 on a pain scale of 1-10, so I was ready to try anything. I've been virtually pain free for the past 3 years, and I am very grateful to my doctor. I'm not saying that this surgery is suggested for others, because we're all different, I'm just saying that there is hope! I know it seems impossibe when you are in so much pain to think that some day it will actually go away, but in my case it was very much a positive attitude that helped. It's important that you use any resource that you possibly can. If your doctor is telling you this is in your head, don't waste another dime on them. Find another and another until you succeed. For anyone looking in Michigan, please feel free to e-mail me for help.

Thank you for making information about vulvodynia available to everyone. My own symptoms have a very specific cause -- I did not experience vulvar pain until being treated with trichloracetic acid for genital warts. I wonder if the symptoms will fade with time, or if any therapies used on women with non-specific or other causes of vulvodynia/vulvar vestibulitis would work for me. I wish all gynecologists as well as other doctors would warn patients thoroughly about the pros/cons/possible side effects of all treatment before administering it. I understand that the strain of HPV that causes external genital warts is not life-threatening, so I could have done without the acid treatment -- now I am paying with severe pain, depression, and uncertainty about my future.

Thank you for making information about vulvodynia available to everyone. My own symptoms have a very specific cause -- I did not experience vulvar pain until being treated with trichloracetic acid for genital warts. I wonder if the symptoms will fade with time, or if any therapies used on women with non-specific or other causes of vulvodynia/vulvar vestibulitis would work for me. I wish all gynecologists as well as other doctors would warn patients thoroughly about the pros/cons/possible side effects of all treatment before administering it. I understand that the strain of HPV that causes external genital warts is not life-threatening, so I could have done without the acid treatment -- now I am paying with severe pain, depression, and uncertainty about my future.

I would love to talk to anyone who has experienced problems similar to my own. I am very sorry for all who experience such horrible pain, but in my case, the pain is only caused by very specific touching of the lower vestibule--and this is not a problem during sex, so much as that my latest gyn. has noted it. For me, the problem is itching--constant, chronic, acute ithcing, that is like the worst yeast infection you've ever had, but permanent. I'm presently on dr. #12 over a 7-year period, and the only agreement among any drs. is that 2 have decided that my symptoms are caused by HPV--I had laser surgery to remove 2 small areas of my cervix 8 years ago. My favorite gyn. to date found evidence of 2 new strains of yeast causing an infection, and it took 1 1/2 years of various treatments with her before the seesawing between yeast & bacterial infections more or less ended. When she could find no organisms but I still itched--and was obviously red & irritated--she referred me on to the dr. I see now. This dr. concurs with the previous diagnosis of HPV causing the symptoms--which is no relief, since HPV is presently permanent. My husband is very frustrated, as am I, and we both worry about having a child. I'm nearly 32, and we want to start our family in the next 2 years, but worry that we have no sex life. We haven't had relations in 4 months, and we're both getting severely depressed over this. Has anyone out there dealt with this? I'm thinking of trying acupuncture now, since nothing else has helped--I've tried nearly all the treatments I've seen here, and nothing has helped for more than a week or two at the most. Any ideas? *Please* contact me!

Hi:

I'm 31 years old and feel I possibly have Vulvodynia. I have had chronic yeast infections since I was 16 years old. In September 1997 I had my tubes tied and every since then I have had severe yeast infections that my normal medications can't begin to touch. I then went to a bacterial infection and back to yeast. I also need to mention, at the time I had my tubes tied, I realized that night that I had a numbness in my right leg, my OBGYN told me that most likely it was the position that I had been laying in during the operation and that it would go away within a couple of months, it is now March and still I have the numbness and also a burning sensation in my leg. I now have the burning in my vagina that I have never experienced, before, could they be related...I think maybe, even though the burning is everywhere within my vagina, there is one particular spot that feels inflamed and on fire all the time. I have been to the Dr.'s office just about every week for the last 2 months, I have gone so far as to have her check me for STD's, so far they have come up clean. She has heard of Vulvodynia but isn't 100% convinced that I have it. I have heard many of you refer to a diet, could someone let me know what you can eat, I also have found cafeine seems to make the burning sensation even worse. I keep asking my Dr. if possibly herpes that just hasn't broken open and she does not feel that is what I have. I'm going crazy already, I feel for you people that have put up with this thing for months or years. A day is too long in my opinion. Lastly, I have used boric acid within capsules, like suppositories, the drug store made them for me, don't need a prescription, use one per night, I found a 75% improvement overall to the burning, just that one spot that I can't seem to find relief with.

I am 29 years old and have been suffering with vulvodynia for 3 years. It started out with recurrent UTI's and yeast infections. I was on every antibiotic out there for almost a year straight. I'm on my fifth doctor and he seems to understand what I am going through. He prescribed Elavil and a steroid cream. I just started it so I haven't really felt any relief yet. It has been so hard emotionally. My husband is very understanding but it doesn't change how miserable I feel. I just want to get back to a nornal sex life and basically a normal life! It's good to know that I am not alone and that there women out there who know excactly what I am going through. That does make it a little easier. Please feel free to E-mail me anytime. Kris

First, thank you for this wonderful site. I was diagnosed with Vulvodynia a year ago and thankfully have a wonderful ob-gyn in Manhattan that is very "up" on this condition. I was doing very well for 8 months on 50 mgs. of Pamelor, compresses of Aveeno and cold water twice a day, and believe it or not, applying Crisco oil topically several times a day. All of a sudden, I have had a flare up and nothing was working. My doctor just started me on 50 mgs. of Elavil and I was wondering how long it generally takes for the Elavil to begin working. Also, how long do these side effects last, especially the fatigue. I am also in the process of thinking about biofeedback. Do you know anyone in the Rockland County area? Do you suggest going to a physical therapist or a licensed biofeedback specialist? wondering how long it generally takes for it to work

My name is Michelle, last year the doctor removed a tumour from my vagina which I believed was causing my incredible itching. Now the itch has returned and there is a new growth. Do other women with vulvadynia also have benign tumours?

My name is Michelle, last year the doctor removed a tumour from my vagina which I believed was causing my incredible itching. Now the itch has returned and there is a new growth. Do other women with vulvadynia also have benign tumours?

Three years ago, after chronic yeast infections, I was diagnosed with vulvular vestibulitis. The doctor said that there was no known causee, but that it was most likely a virus. I was treated first with premarin which caused intense itching, then antibiotics which didn't help, then I was told that it may go away if I became pregnant. It's been over a year since my daughter was born. The pain during intercourse has lessened, but I now have new symptoms. I have abdominal pain (behind the pubic bone on my right side) which seems connected to pain to the right of my clitoris. These pains are sometimes twinges, sometimes knock me off my feet. What bothered me the most was the intense painful vulvular swelling that I would feel during the heaviest days of my period. Yet to the touch, the area didn't feel swollen at all. By now I had changed doctors, and the doctor I now had refused to acknowledge that I had a problem. I switched doctors again. When I went to the new doctor, I explained the frustration of the disease and not being listened to by my last doctor. He acknowleged that I have a reddened area andgave me only the treatment of surgery, but said there was a possibility that I had vulvular endometriosis. I asked how it was treated and he said sometimes birth control pills help. I asked to try those, and he gave me a 3 mo. supply, saying to let him know if they help. They alleviated the pain during my period. I called to ask for prescription and a letter to insurance so they'd cover the pills. Now he claims that I requested them as birth control. So, once again I feel that I'm not being listened to, but I am very happy that I've found something to help. The pain is not entirely gone, but it's bearable. By using all fragrance free products and wearing loose pants, the pain isn't too bad. Astroglide has helped with intercourse, though at times I do roll over and curl into a ball and cry (my husband isn't very understanding about my disinterest in sex). I've skimmed through some of the comments, and was interested in the "tailbone trauma' theory. I hurt mine badly when I was 12. And I have had incredible pain in my back during pregnancy (worst in the first few months - so that I can't move). I would greatly appreciate any information about vestibulitis or vulvular endometriosis. I am looking for a good doctor in the Rockford, IL area.

SINCE VULVODYNIA IS WORSEN WHILE WITTING, HAVE YOU THOUGH ABOUT DESIGNING A SPECIAL SITTING DEVICE (CHAIR) THAT COULD REDUCE PRESSURE ON THE AFFECTED AREAS??

This is my first visit to your site. I just can't believe how many of us are afflicted with this (I used to think I was the only one because no doctor could find anything wrong with me and seemed very puzzled). I have been on Elavil at 10 mg for about four years and it really has helped. I am really not crazy about staying on it forever, I'm not sure but I think it has caused my appetite to go crazy because I have gained about 25 pounds since being on it. I am also afraid that it will eventually lose its effectiveness. Sometimes when I have a flare-up of the burning, I will drink ice cold water and the burning will subside. I noticed this once and tried it a few more times, and there does seem to be a relationship. I also notice that the majority of women also complained of yeast infections either before, during, or after their vulvodynia symptoms began. Hmmmm..... Thank you ever so much for all the information.

Hello all, I've read some of the comments, and it is good to hear from others but also very depressing because I still have no answers. I actually been suffering with vestibulitis or vulvodynia for far longer than I realized. For some time - can't remember how many years, I have complained to my doctor of burning at the start and end of my periods. He basically shrugged his shoulders and moved on to the next thing. Last I found that if I avoided intercourse for 4 or 5 days after each period, then I wouldn't have the burning. So that is what I did for a long time. However last July the problem became severe. Needless to say after going through what you all have, I ended up with a doctor who told me what I had. He put me on amitriptyline and within a month I started having relief. However, for some unknow reason a month later I was back to where I began and that was in December. I am now trying to find somewhere to have biofeedback done. I need to do something. I live in the suburbs of Chicago. Does anyone know of a contact for me? Thanks for the web page and the constant efforts to find a cure.

I need more info in general. Fortunately, my case is not so severe that I am affected all of the time. But having a normal sexual relationship with my boyfriend is getting very difficult. He is extremely understanding but we need help quickly. I have tried changing by detergent and estrogen cream. It has not helped. Where did this come from?

Does your biofeedback techniques work for someone like me? Burning during intercourse and after unrination can be dreadful sometimes. How will biofeedback help this? thanks.

I so appreciate being able to hear from others who have had to deal with this 'silent' problem (silent because I know I never talked about it to anyone!) Any info I can get I am soaking up...thanks

This is a great web site...at last I feel that I am not going crazy. I am 35 years old and have had external vaginal itching/pain problems for the past 11 years. It actually feels like my pubic hairs are being pulled on at times. The symtoms subsided after being on Amitriptolyne for over a year back in 1988, but has now returned ever since the birth of my second child in 1996. Since then, in addition to all the typical symptoms, I also now have the sensation of "bubble" or air pockets traveling through the vagina. I feel this each time I sit down and walk around (it feels like the "bubbles" go from back to front) . It is not painful, but is very annoying. Sometimes there is discharge accompanying this feeling. I have been examined by a few doctors and everyone says look perfectly normal. I wonder if this could all be related. The last doctor I saw told me to lighten up about it and that was really frustrating because he has no idea how this is effecting my whole physical/mental well-being. Any comments/ideas??? Also, does anyone know of a doctor in the Milwaukee area that specializes in this?

I have finally been diagnosed with Vulvar Vestibulitis Syndrome. I also have interstitial cystitis, irritable bowel syndrome, and endometriosis. This is a wonderful forum for learning about this illness. I am joining the Vulvodynia Email list and encourage anyone to email me for further discussion. I am lucky enough to have a science background and have access to research facilities, so I have read every current article on Vulvar Vestibulitis Syndrome. I am thinking of writing a paper--from the patient's perspective, so if anyone has suggestions as to where to post it, I would appreciate your help. It has taken me three years to have the VVS diagnosed and, thus far, all doctors have told me that there's nothing I can do about the IC and IBS. I have had two laparoscopies for the endometriosis and am interested in finding out if there is a connection between endometriosis and these other disorders as that has not been addressed in the literature. There is a definate connection between VVS, IC, and IBS and I am hoping to find relief for all of them. I am seeing the specialist this week for a discussion of possible treatments, but I have so far had my family doctor prescribe me 50mg of amitryptaline (Elavil). I am hoping to undergo biofeedback although this may pose a financial problem as this treatment is not covered under Canadian health care. I think that it's important to note that there are many many possible causes of vulvodynia and it is important to get a correct diagnosis. At this point, there seems to be some discrepency as to the difference between VVS and Vestibulodynia, which is either a sever subset of VVS or another condition which is related to dysesthetic vulvodynia. Dysesthetic vulvodynia seems to be related to the neural pathways and is best treated through tri-cyclic antidepressants (ie. Elavil). VVS is differentiated as causing pain only during attempts at sexual intercourse whereas the other types of vulvodynia mentioned may cause pain all the time (ie., upon urination, without pressure applied). Initially, I only had pain upon sexual intercourse, but now the pain can persist without any applied pressure, perhaps indicating that Vestibulodynia is a subset of chronic VVS. From my readings, it seems as though surgery (perineoplasty) is the best way to treat VVS. The reason for this is that there is a histologic componenet to the syndrome. Certain chemicals (cytokines) are in association with certain nerve fibres which creates a sympathetically maintained pain response. Surgery removes these fibres and therefore eliminates the physiological component of the pain. In the studies that I have read, as long as a correct diagnosis is made and other causes of vulvodynia (perhaps concurrent) are ruled out, there is a very significant success rate for those who have had surgery. There is some discrepency as to the extent of the surgery. Some researchers has postulated a simplified version of the surgery and have met with success (ie. Martha Goetsche, Portland). I am interested in finding out the various results of surgery for VVS, the extent of surgery, and if anyone knows of surgeons who advocate a simplified approach in Canada (I live in Vancouver, BC but will travel). Also, I would like some feedback on the use of amitryptaline (Elavil, etc.) and its effects on VVS as well as IC. In addition, any information related to treatments for IC and IBS that may be of use would also be appreciated. Finally, the most debilitating effect of VVS is its prevention of sexual intercourse. The emotional strain, the effect on one's relationship, and the psychological effects of not being able to have sex are extraordinarly difficult to deal with. I would appreciate any input as to ways of coping with this problem. My long term partner is very understanding, but being creative for 3 years gets a little tedious after a while. However, precluding intimacy is also highly detrimental. Any creative suggestions are welcome, I've exhausted my repertoire.

I have had Vulvodynia for the past 14 years (since the age of 16). Like many others who have left their comments at this site, I also have been diagnosed with HPV and treated with no visible symtoms remaining. I sympathize with the respondents in the relentless burning and pain associated - many times I have run to a ice cold tub to squelch the pain. Recently, I have acquired buring mouth syndrome and taste distortion and have had no relief since August of 97. Little information is out there on the cause or treatment. I have read that viruses may play a role and can't help but wonder if HPV could be a factor. I spent many nights wondering "why" and I think the hardest part is the thought that I may never find the answer or the cure for these two problem. To say the least, it has left me bitter and angry. I hope that progress can be made and relief can be found...someday.

DOES ANYONE KNOW A DOCTOR IN THE DALLAS,TX AREA THAT SPECIALIZES IN VULVAR PAIN?

slg@win.bright.net Sherry

I just saw my gyn yesterday and received the news that I have one more ridiculous disease. Good grief! Thank goodness for web sites like this one or my information would be fairly sparse. I had a hysterectomy twelve years ago due to endometriosis. I had the endometriosis from the time that I was fifteen years old. Can't remember ever having a period that didn't incapacitate me. About eight years ago I began having symptoms of fibromyalgia. It seems that no matter how well I take care of myself (and I do take care of myself extremely well), the least amount of stress causes me to have a flare up of something. Two years ago I began having menopausal symptoms ( I had kept one ovary). Last year I was put on premarin and about fourmonths after that started having chronic yeast infections which caused my gp to take me off the premarin. My gp sent me to the gyn because she had exhausted all reasoning behind the yeast infections and I started to have negative cultures. At this time I experience itching around vulva and rectal areas, where apparently I have lesions. So here I am. Interetsingly enough, I saw a magazine article at the gyn's office talking about the eight things successful women do to relieve stress. I've been doing them all and more for the past five years. Yoga, walking, friendships...but I recently had a move from one job to another...and a less stressful one at that and it seems that was all it took. Well, that isn't entirely honest. There have been other stresses, but gee golly, I've always felt like I thrived on some stress and anxiety. Does anyone out there have fibromyalgia and this thing too? Also, I would like to know more about how people have tolerated the amitripilene as far as drowsiness goes. And...info on the low oxalate diet. Thanks everybody for sharing,

I also am in the position of nearly all of you.... Vulvodynia... and nearly going out of my mind with pain & itching. I can't seem to find anyone to listen. I've tried so many doctors, and they all say the same, it"s not my field of expertise. And that seems to be the end of the conversation.

I'm sorry for you all, as I live in Canada, and have a list of doctors and medications that almost makes me a physician on this subject. I've had it for four years now after a drastic car accident.

Someone must know, before we all commit suicide with the pain.....

Prayer may be our only answer... (and so far, that hasn't helped me). If you know of anyone in Seattle, or area, or in Western Canada, PLEASE, email me, PLEASE.....

I have been suffering from vulvodynia for three years. I had it mostly under control with a nystatin cream which I applied twice a day. A year ago I went to live in Korea and after a month of being there my symtoms disappeared. About a month after I returned to the United States my symtoms returned. Then three months later I went to Africa on vacation for two months. My symtoms again disappeared within a month. I believe that this condition, at least in my case is related to the high number of preservatives used in the food here in America. I am now starting a new diet based on foods that are freshly prepared and am only drinking bottled water. I have ruled out pesticides on produce, which many of my friends have suggested as a cause, since other countries use as much if not more pesticides in their food production. If my new diet does not work I will be forced to move to another country. I hope this helps someone else.

I have all the classic symptoms of vulvodynia that have lasted and been misdiagnosed for about a year and a half. It started with several severe bladder infections where I took Sulfa on a daily basis. I then started having what was first treated as gardnerella then yeast with very short term results until the next flare-up. Sexual intercourse has become almost impossible as my vulva swells, burns and sometimes bleeds to the point where it is unbearable. When the swelling and pain subsides(which may take days)I still may have burning and sometimes a discharge that makes me feel less than "fresh". I have also become very depressed. I do have other issues in my life that have me extremely stressed. I am willing to try anything to help with this problem if I only knew what was causing it. I copied some information so I could show my doctor and hopefully try some of the suggested treatments otherwise I will be searching out a doctor familiar with vulvodynia. It has helped reading this guestbook and knowing I'm not alone. Ann at gmprior@micron.net

I have read everything posted to this guest book with great gratitude and interest, but also sometimes with great concern when it seems so many women have suffered for years. I also notice that a number of people feel their problems may be related to injuries to their tailbone, but it seems no-one has written in to relate their present symptoms to direct injury to the vulva, as I'm certain mine are. My problems started 18 months ago, a short time compared to some on this list, but the results for me have been so devastating that I'm desperate to hear about anyone with similar experiences. I'm 44 and a State Registered Nurse in an English hospital, with 17 years experience, 6 of them on an Obs/Gyn ward, and yet I still find any kind of information or advice very hard to get.

The pain and trauma that have come close to ruining my life began on my 43rd birthday. I'd been out for a meal with some of my colleagues from work, and was on my way home with bags of presents and shopping for a special dinner I was planning with my husband later in the week, and took a shortcut to get to my bus. The city was full of light and people, and although this street was quiet I didn't worry as there was a group of teenage boys and girls laughing and drinking in a doorway. One of them stopped me to ask the time, and then they surrounded me and started grabbing at my shopping bags. I only started to panic when one of the boys seized my arms from behind and the others were all over me going through my pockets, pulling of my watch. One of the boys grabbed and squeezed my breast. I was almost too overcome with shock to shout out, but as I opened my mouth to try I was punched in the solar plexus and fell back sprawling. Once I was on the floor, they began beating me in earnest. As I put up my arms to protect my face and head, I was spat upon, kicked in the ribs and kidneys, and the boy who had squeezed me literally stamped on my left breast. I started flailing my legs and arms to try to get them off, and now began screaming as loudly as I could. They began to panic and started running off, but in the last second the taller of the two girls involved kicked me as hard as she could in the vulva. I was only wearing light lycra jog-pants, and she had heavy-soled boots on. I have had two eye operations and three children, but I have never experienced such pain. I seemed to feel and remember nothing but pain for hours afterwards, and the intensity of it only got worse with time, only being relieved with opiates at the hospital.

I developed an enormous hematoma, which grew so large that they considered operating on it, and was catheterised for 11 days. Even with the strongest analgesia the pain and trauma of even being examined was truly terrible. Several blood vessels in my clitoris had been ruptured by being trapped against my pubic bone, and full resorbtion of the bruising and clots took weeks.

Medical care of my immediate injuries was of the best, although in my case I had the embarrassment of being examined and nursed by friends and close colleagues. But in a way the worst was to come, as after I went back home and eventually back to work, with all the physical signs of injury thankfully resolved, I still suffered from continuous, burning and sometimes crushing pain in the vulva and especially around my clitoris. It kept me awake at night, and the intensity would fluctuate from a constant nagging reminder to stabbing, shooting pains that made me catch my breath and often forced me to sit down. Walking, or activity at work, made all this worse. The situation is little better now. Worse than all this is that my married life is in ruins. My husband, aside from being in a constant state of suppressed anger that the police investigation came to nothing, has been fantastically supportive and patient all this long time, but each of the half-dozen attempts we have made at sex have been disasters. I find it very hard to become aroused, and if I do it only brings on severe clitoral pain. I worry very much about the future of our relationship.

I have spent many, many hours, and also much money I can ill afford, on trying to obtain treament or help; the results of this have been so depressing, with all opinion agreed that my vulva is now physically completely recovered. Perhaps because I am a nurse, everyone has been very careful to avoid telling me it's 'all psychological', but their minds are not hard to read on the issue. Friends at work, too have made things worse after an initial bout of silent sympathy, by trying to cheer me up making light of things, even asking if I'm glad my sex life has got back to normal. It never has, and I miss my husband very much.

The only person who seems to have understood much is another friend who had a similar (though apparently not as bad) injury to her vulva from a fall onto a chair-back while climbing to reach a shelf. She only told me her story months afterwards, and as an embarrassed confidence. She gets chronic pain in the labia, and I worry all the more as her marriage ended in divorce.

Has anyone out there had an experience like mine? Or any advice? I have to use a friend's computer to send this, but will keep coming back to these pages in the hope of finding someone who has shared anything like my troubles, and who I hope has found ways to deal with them.

Marie --

I'm also a nurse (in the U.S.) and I have had vulvodynia for over 3 years. Mine developed along with fibromyalgia and started with what seemed to be a vaginal infection. I have not specifically heard of vulvodynia being caused by a vulvar injury, but many women have developed it after childbirth, which could certainly cause injury. I'm sure there are also other women out there with similar experiences to yours. I don't see why the treatments usually used for vulvodynia wouldn't work for you. There are so many different possible causes, but most women seem to respond to the same treatments, regardless of cause. I'm married and this disorder has greatly disrupted our relationship. My husband and I are in sex therapy and that has helped quite a bit. I strongly encourage everyone with vulvodynia to seek counseling. No one should have to handle the emotional ramifications of vulvodynia without professional help.

I don't like to post my email address, but it is on my website. Please feel free to email me privately. I am almost pain free from the combination of nortriptyline (tricyclic antidepressants are often used for treatment of chronic pain because of their effect on nerve response), Estrace (.1% estradiol) cream, the low oxalate diet, calcium citrate supplements, N-acetyl glucosamine supplements, and various lifestyle changes listed on my website. Don't give up hope. There are many treatment options. I haven't even tried biofeedback yet, but I've heard many success stories from that as well.

I hope it helps to know you're not alone in all this.

Katie F.

I have just learned so much about vulvodynia within one day by reading this Web Site. I delivered a baby on November 27th. My problems started about the 4th week after delivery. My Ob/Gyn kept telling me I hadn't healed yet, but the pain felt different from general soreness.

Every week I would return to my Ob/Gyn and she would examine me, but never could figure out the source of the pain. It was really frustrating, because she kept focusing on my psychological health, and not the source of the pain. The pain was so severe that I had to hire a baby-sitter to watch my infant while I sat in the bathtub during the evenings. On my last visit to my Ob-Gyn, she saw a stitch which had not dissolved from the tear. She removed it and referred me to a specialist if the pain continued..

Three months after I delivered, this new doctor found the cause of the pain immediately. He used a colpsoscope (sp?) and found a lesion in my vagina. He prescribed Estrace three times a day. Two weeks later the lesion seemed to be getting smaller. For three days, I was pain free. But now I have the symptoms about which I am reading on this Web Site.

If anyone has experienced vulvodynia after delivery of a baby, pleas contact me at trippe@ma.ultranet.com.

Thank you and I hope I am using this guest book correctly.

Barbara

I have suffered 5 years, countless doctors, 3 urologist, 2 gynacologist.After having major surgery for a etopic pregnancy with a epidural nerve block I developed vulvodynia.On top of painful urination one urologist stretched my uretha-totally unbearable. I finally found relieve totally from a woman urologist fresh out of med school with up to date info. I tried Elavil, but it din't work. But IMIPRAMINE HCL 25mg Totally erased all symtoms within a few days. I thank the lord I am better after 5 long years of worrying , thinking I might have cancer, diabeties ect. I wonder if the epidural or surgery caused nerve damage.I highly reccomend this IMIPRAMINE!!!!!!!!!!

My problem stated a month ago. I had a cervical biopsy (that check out ok for now) but used some soap and got a rash on the labia major, doctor prescribed Globetasol Propionate ointment and that cleared up. A few days later a had inflammation in my labia minora (inside lips). It has been five weeks now and hardly any improvment. Last week my doctor found a bacterial infection and I was on Cleocin for 7 days. Things aren't as bad as they were, but still not much improvment. Could soap really cause inflammation on lips that would not improve after 5 weeks? I have done all the no dye, double rinse, ect. that is recommended. I'm hoping after (and if) this clears up I will be done and I'll chalk it down to the soap. They say not to use soap anyway, that you self-clean and you should just use warm wter and your hand to clean inside.

Anyone ever have a problem with soap? Is 5 -6 weeks too long for inflmmation not to get better? Please e-mail me at nickels@dataplusnet.com Thanks!

Hi, My name is Rachel and I am an undergraduate at Brown University. I am currently involved in a project on vulvodynia/vulvar vestibulitis. My group and I are putting together an informational packet on these disorders for the National Women's Health Network,an organization that, among other things, distributes information to women on various health concerns. We are looking to include the personal experiences of women who have been dealing with VV or vulvodynia in our packet. I was wondering if anyone would be willing to correspond with me over email about their own experiences with this problem. I am looking especially for women's experiences with various treatments, what has worked, what hasn't, as well as coping with vulvar pain during pregnancy and delivery. Any information or experiences would be helpful. Thanks, Rachel

After 6 different physicians cervical colposcopy, cervical cryosuurgery and a hysterectomy at 37, I was finally diagnosed with vulvodynia and have been on Elavil 75mgs for 5 months. The relief is welcomeded but not complete. I am an RN and feel frustrated with the lack of medical knowledge and concern of this problem. Lori at rabacon @bellsouth.net

I am 26 years old and have had a similar skin condition of the vulva, it is called lichen sclerosus. This condition causes the skin to be white (like milk), thin, very itchy, and causes many popped blood vessels during sex and when wearing tight clothing. One side of the vulva is now fused together, it looks as though it has been glued or sealed. I was diagnosed at the age of 19, I had a biopsy done on a clotted blood vessel on the vulva. I was instructed by my gyno to use a 2% testosterone cream which I used almost every night for 7 years. I was unaware of the terrible side effects it was giving me, My clitoris and vulva were congested and swollen with blood, it was giving me a turned on feeling everytime I urinated or my clothes rubbed wrong - it was gross

I also began having MAJOR PUBIC PRESSURE and frequency in urinating - all 15 urine cultures over 4 months came back negative. I had a cystoscopy (perfectly normal bladder) and my urethas stretched, 12 days berfore my wedding. NOT A NICE EXPERIENCE. Finally after 6 months of thinking I was crazy, I went to a urologist in NYC who gave me a different pelvic exam - he checked my pelvic floor muscles and found them to be in major spasm. Since January, I have been receiving electrical stimulation at my urologist office and have now started pelvic floor rehabiliation at Kessler Institute. This has helped the pressure and frequency. However just recently I have started having major burning of the vulva. I was told this is due to the hypersensitivity of the skin, because it is thinned out and the pelvic muscles are so tight. I am hoping the continued use of the e-stim and biorfeedback will clear it up. I have purchased the unit from INNOVA so I can use it at home every day.

I get so FRUSTRATED TOO! I am so young, and a newly married. My husband has been so understanding, but it is getting to me emotionally. Sex has been almost impossible, needless to say very tight and painful. And now it has been burning, not only with sex, but when I urinate and wipe. The buring lasts for hours. I have noticed that the last two burning episodes came 1 week before my period and lasted for about 5 - 6 days. Could this be the start of vulvodynia? I am currently using vitamin e liquid every night (no more testosertone), can buy stock in aveeno soap and bath solution, and now have just been given Clobetasol Propionate Cream 0.05% for the burning.

Dr. Glazer thanks so much for this website, it has been so helpful. I can't believe how many people have problems, especially women my age. Could long tem use of testosterone cause pelvice floor problems, or problems when I want to become pregnant? Should those of us in child bearing years be using so many steroid creams?

I recently posted a question to the Fibrojmyalgia newsgroup in regards to Lichen Sclerosus and got a response from a person with Vulvodynia who suggested that I get in touch with this website. I had not heard of Vulvodynia and my dermatologist did not say anything about this ailment. I have had this condition all my adult life. For years, I can remember vulva itching and scrating and getting prescriptions of Kenacomb cream (beginning age 16 or thereabouts). For years menstral pads were awful. They would make my skin burn and itch until I switched to tampons. These however could only be worn on light days and I had very heavy periods for three or four days. I did not get diagnosed with Lichen Sclerosus until the late '80s and the dermatologist did two biopsies. Both came back negative. She did these tests because the veins just inside the lips are very black or dark purple. She tried testosterone in vaseline for a topical cream. It helped for a while. Then this past year, I began having bad itching and burning and my doctor sent me to a new dermatologist, who prescribed betamethasone for about and month, then switched to a 1% cortisone in vaseline. This mixture helps a little, but I find the betamethasone better. The doctor does not like me to use it often as the side effect is that it makes your skin thin. I have also found recently that unless I use a vaginal juice, like Astroglide, I do not enjoy sex. I want to tell you also that I have had Fibromyalgia for about 15 years and just wonder if all is connected by way of the immune system being out of wack. Could you please tell me if in deed, there is a test to determine if I have Lichen Sclerosus or Vulvodynia? Thank you for your time.

I recently posted a question to the Fibrojmyalgia newsgroup in regards to Lichen Sclerosus and got a response from a person with Vulvodynia who suggested that I get in touch with this website. I had not heard of Vulvodynia and my dermatologist did not say anything about this ailment. I have had this condition all my adult life. For years, I can remember vulva itching and scrating and getting prescriptions of Kenacomb cream (beginning age 16 or thereabouts). For years menstral pads were awful. They would make my skin burn and itch until I switched to tampons. These however could only be worn on light days and I had very heavy periods for three or four days. I did not get diagnosed with Lichen Sclerosus until the late '80s and the dermatologist did two biopsies. Both came back negative. She did these tests because the veins just inside the lips are very black or dark purple. She tried testosterone in vaseline for a topical cream. It helped for a while. Then this past year, I began having bad itching and burning and my doctor sent me to a new dermatologist, who prescribed betamethasone for about and month, then switched to a 1% cortisone in vaseline. This mixture helps a little, but I find the betamethasone better. The doctor does not like me to use it often as the side effect is that it makes your skin thin. I have also found recently that unless I use a vaginal juice, like Astroglide, I do not enjoy sex. I want to tell you also that I have had Fibromyalgia for about 15 years and just wonder if all is connected by way of the immune system being out of wack. Could you please tell me if in deed, there is a test to determine if I have Lichen Sclerosus or Vulvodynia? Thank you for your time.

Have any of you been so upset with this condition that your blood pressure has gone way up? I use to have the normal 120/80 but it has gone up to 142/82 and probably still rising. Its like I can't control the stress level! I know this is not a life-or-death illness, but just knowing there is as yet no cure seems to make matters worse. Even reading everyones own problems seems to make it worse as some of you are in much great pain than I am now and worry mine may get worse. Feel free to e-mail me at nickels@dataplusnet.com Mom

I am a 31 year old woman who was diagnosed with so many gynecological disorders it makes my head swim just thinking about it. I have had the burning and itching and excrutiating pain for many years, and no one could ever tell me what it was or why it was happening. I had countless urine tests and yeast infection tests and tests and tests and tests. I have had a total of 5 operations on my reproductive organs the last of which was a total and complete hysterectomy. The burning and pain did not go away.

In tears I went to the gynecologist demanding to be seen after the hysterectomy I had to see the chief gynecologist because my regular gynecologist was off that day. A pelvic exam showed nothing, but then he said it appeared that I was suffering from a little known condition called vesticulitis. He did not give me very promising news about this condition though. I read what little I could on this condition and applied the cream, yadda yadda, yadda.

I do not seem to suffer as much as I used to from it, and do have occasional flare-ups, but I think for me just knowing that I was not going crazy or imagining this pain made a world of difference. I am very scared though as I have recently found out that I am also HIV+, and have been for at least 10 years. I am not sure if the HIV has any effect upon this condition and I truly do fear that the lower and more beaten my immune system become the more intolerable the pain will be. I know, live for TODAY.

I do not take many prescription meds, and treat my HIV with natural therapies and the like. I was taking 40 mgs. of Nortriptyline for chronic pain but have been weening myself off of this medication because of the big weight gain I have experienced. The Nortryptilline has helped tremendously for my chronic pelvic pain, and is also of benefit for the treatment of neuropathy, another condition I am experiencing related to my HIV. Now I read that this medication is beneficial for Vulvodynia, and am afraid that I will be stuck taking this medication forever just to live somewhat"pain-free."

Yikes! I did not mean to rattle on, but I have so much in my head. I am so relieved to find this site and know I will be able to get something from here, and hopefully be able to give something back.

God Bless All of You.

JoAnn

I am 36 and suffering from this horrible disease. I also suffer from severe endometriosis and infertility. I recently stopped using fertility drugs. I used them for the past 2 years. During the past 2 years, I have also used hormonal treatments (Danazol) to help shrink my endometriosis lesions after a laparoscopy.I had cryrosurgery in June '97 on my cervix (due to HPV). Idid an invitro (IVF) cycle in Sept.'97 . My recent experience with vulvodynia began on Xmas morning . I thought I had a yeast infection so I began treating it with Terazol cream. From then on my life has been a nightmare. If I could choose I'd rather suffer the endo pain and even the infertility but this vulvodynia experience has certainly damaged my spirit. I am not the same person I was 117 days ago. I have beeen to seven doctors in the past 4 months. The four doctors I saw in my immediate area were clueless and treated me for vaginitis. I felt like a bother to them. I was originally diagnosed with a yeast infection. Then all the cultures and tests came back normal and I was told that nothing was wrong. Each doctor prescribed a cream to use. They all made matters worse. I suffer from itching, burning, inflamed vestibule,redness,discharges,etc. This is not normal. No one would listen. I then made appointments with doctors at teaching hospitals in Philadelphia and traveled the 90 minutes to seek help. I was again told that my tests were negative. One doctor in Phila. presribed Claritin and Doxipen along with a cream. I cannot use any type of steriod cream. It hurts. I complained that I was not seeing much improvement . I was then diagnosed with a bacterial infection. Cleocin was prescribed. One dose of it and the pain was excrutiating. I immediately discontinued use and was then referred me to a dermatologist . It was the resident dermatologist who suggested that I have vulvodynia. I am continuing to take Doxipen each day. Some days are better than others. The only thing I accomplish is going to work when I don't have an appointment. Other than that I can do hardly anything. I take sitz baths every day. I hop right in after I rush home from work. Iam looking for support and the name of any medical professional who is willing to help me. Any sugesstions of anyone in the Philadelphia and surrounding areas? Iam concern about the cause of this disease but right now I am more concerned with proper treatment. I am also interested in learning if there is a relationship between vulvodynia and 1)endometriosis; 2)fertility drugs (high doses);3) recent surgeries (egg retrieval and cryro);4) HPV .Thanks for listening and your support. Please help me.

Where can I get a copy of the oxalate diet? Is it on line anywhere? Thanks,

Nancy (and anyone else who's interested!) --

My web page includes guidelines for the low oxalate diet. It's at:

Katie

Hmm, Is lichen sclerosis part of vulvodynia? From the comments, I kinda think so. I've had l.s. since about 1978 and over the last few years have had stiffness in my whole body. The latter I can reduce by not eating sugar, not much meat, reducing any acid ash producing foods. Today I have just learned about the low-oxalate diet. Maybe that will help ... as I don't seem to do too good with peanuts, spinich, chard, wheat, etc. Where is a list of the high oxalate foods? The lichen sclerosis is somewhat helped by testosterone cream. When I tried estrogen and cortizone creams years ago, there was no help, if fact, my symptoms got worse. Lichen sclerosis mostly bothers me for a couple of days before I bleed. Lots of itching, dryness, parchment-like skin, and some pain ... Thanks for having the site and comment area ... Kaye

Hmm, Is lichen sclerosis part of vulvodynia? From the comments, I kinda think so. I've had l.s. since about 1978 and over the last few years have had stiffness in my whole body. The latter I can reduce by not eating sugar, not much meat, reducing any acid ash producing foods. Today I have just learned about the low-oxalate diet. Maybe that will help ... as I don't seem to do too good with peanuts, spinich, chard, wheat, etc. Where is a list of the high oxalate foods? The lichen sclerosis is somewhat helped by testosterone cream. When I tried estrogen and cortizone creams years ago, there was no help, if fact, my symptoms got worse. Lichen sclerosis mostly bothers me for a couple of days before I bleed. Lots of itching, dryness, parchment-like skin, and some pain ... Thanks for having the site and comment area ... Kaye

Howard, I would really value your opinion - I have been diagnosed with 3 sacral cysts that are all on the nerve roots, one of the nerves being the pudendal nerve. The cysts are also on the left side. My pain is all on the left side and consists of extreme sharp pain when touched or moved - therefore walking is difficult. Sometimes the pain is also burning. The pain is around the clitoris and around the vagina. My doctors are not 100% convinced that the cysts are causing the pain, but say that it is a strong possibility. What are your thoughts?

Has anyone gotten a 24 hour urine collection test done to check for the oxylate level and the dr says it (20) in normal range? Would "normal still be too high for someone with vulvodynia? Has anyone done the urine testing with the Pain Project (kit is $350) Scientific Connections (Clive c Solomons)?

It seems like all of my problems started after a gall-bladder operation in 1993. I don't know if they damaged nerves in there when they operated or what. They put some of the instruments in thru my belly-button to remove the gall-bladder. A few months later my back started hurting real bad. After two years of doctors not finding the problem, a freind read a magazine article on interstitial cystitis (inflammation of the Bladder walls) which sounded right. A good urologist confirmed this. Sometime after that I started having vulvar burning. All my problems seem to be helped when they're at their worst by a strong anti-inflammatory, but my stomach can hardly stand them anymore. I sometimes find relief by drinking baking soda water. I also suffer from chronic yeast infections which defy all treatments so far and they definitely make it worse. Have tried several herbal things but not much help. My husband is very understanding but sex is very debilitating causing extreme burning and severe fatigue. This burning at times feels like its in my stomach now and sometimes goes all the way down my legs and makes my feet burn like crazy. I also cannot stand to be too warm, like covering up much at night. I also was hoping to find some remedies from this board. Low oxylate diet sounds good but anti-depressants did not relieve pain-I've suffered from depression for many years and have been on different anti-depressants for about 10 years now. Anyway, I'm trying not to let it get me down. Thanks for this board.

Was having a bad time with the constant feeling of pressure on my bladder to the point where it was hurting about 80% of the time. Talked to my doctor, she asked me to give the diet and calcium citrate a try...have been doing that faithfully, however, I also talked with my chiropractor and he sent me to his partner who does the Upledger Cranial Sacral treatments that John Upledger, D.O. teaches. Marvelous results as far as the bladder is concerned. Wow...I had relief in the first day. I have gone back for my second treatment and will go back probably four more times. I still have the discharge and the itching and sometimes the burning, but the pressure was really distracting and probably the most painful for me. It is good that I have found something to ease it or I am sure I would have become worse all the way around. It is so easy to let the stress make more pain, but I feel like I have a handle on this part of it anyway. Just thought I would pass this information along to everyone. And thanks all of you for being here. Sherry

I'm 36 yrs old and have been experiencing burning, itching, pain in the vulvar and anal area for 2 yrs. I was initially treated for a yeast infection 2 yrs ago and have had problems ever since. I was told to buy otc yeast medications (which I did for 1yr, very expensive and didn't help). I was also told that I had bacterial vaginosis. Needless to say I was repeatedly treated with metrogel and cleocin. Regardless of what infection the doctors were telling me I had, nothing seemed to help. After another positive yeast culture I was prescribed terazol for 1 month. No wonder my vulva was sore. For one straight year I injected creams and suppositories almost every day. I finally took myself off of all meds. I'm still having problems and just don't know what to do. I started seeing a vulvar pain specialist about 6 months ago and he thought I might have VV. Saw a physical therapist and she felt that I didn't have VV. I've done it all, calcium citrate, elavil, claritin, etc. The act of intercourse doesn't hurt, it's the day after when my skin becomes inflamed and irritated. Was wondering if any other women felt their vulvar disorder was initially caused by yeast? This website is wonderful. I finally feel like I can communicate with women who don't think I'm crazy.

After suffering with Vulvodynia for three years or so, I've finally found about 75% relief. The relief began when I started to eat yogurt every day; I have not had a yeast infection since then (about one year). Prior to that, I developed a yeast infection each month. The other thing that helped was simply leaving things alone! (Meaning, no sex for six months, no topical medications, oral meds, citrate, biofeedback, or myofascial release). I truly believe that most of the treatments made me worse. Has anyone else had this experience?

This site has been a wonderful find. I wish I found it sooner. I have been suffering for over 4 years, and have tried everything under the sun and have been through too many doctors to count. All with no success. The pain has been extremely bad for the past two years, and my hope and happiness have faded dramatically. For those of you suffering for many years with little or no relief from treatments, you may want to research or ask your doctor about a procedure called a vestibulcetomy. I just went through this about a month ago, and my pain is gone. I'm not going to say I'm cured, I know I need to give it more time to really know for sure. My doctor uses it only as a last option, and has very strict guidelines. He looks for very specific symptoms such as point tenderness, and chronic inflamation. Although my pain was felt through out the vaginal opening, it was stemming from the Bartholins glands just below the hymenal ring. The vetibulectomy removed the irritated skin from around the opening to the vagina, and as I said before, this is the longest I have been pain free in years. While I am not recommending anyone to jump into surgery, I just wanted to let people know about this, because after suffering for over four years, January of this year was the first I had heard about it, and since nothing esle was helping, I figured I had nothing to lose. I only wish I had heard about it earlier. I wish all of you out there the best of luck, and I hope you can find something to help you live a pain free life once again. Feel free to email me with any comments or questions.

I have discovered that my body does not dissolve sutures and instead of my gyn performing a laparoscopy where they remove the sutures/granulomas they have gone in and cut them out with a laser. I've been seeing a neurologist who has diagnosed me with pudendal genito-femoral neuralgia (nerve damage) from the irritation by the sutures, infection of the sutures, and repeated surgical insicions of the vaginal cuff itself. She has put me on anti-convulsant medications (depakote and an trycyclic anti-depressant Pamelor)for the super sensitivety and the pain. It works....just like someone turning off a light switch. We tried gabitrol, lamactil, tegretol, and neurontin but I was unable to tolerate the side effects even though these medications worked very well also. The gynecologist has used a lasar to remove several of the granulomas/undissolved sutures with good results. However after the very last of the granulomas that had showed up on the latest ultrasound was lasered out...I have been plaqued with an infection in that site and also a discharge from my umbilicus (belly button) that no amount of oral antibiotics that the bacterial culture reports a sensitivity too seem to be able to clear up. A ctscan was done and fluid showed up but my gyn seems to be reluctant to do anything else except bacterial cultures and oral antibiotics which so far have proven to be futile. I don't want another surgery. If a docter can't sew you up with sutures then what else can they possible use? Has anyone else had this problem? Can anyone suggest a docter that can treat this or maybe a theory as to what maybe wrong?

Sincerely,

Kendra Crumpler NightShade3@rocketmail.com Bridge City,TX 77611

I was diagnosed with vulvodynia two years ago. I was a bit lucky to have gone to a doctor who could give me a diagnosis instead of going from one to the other like many of you have. However, he wasn't able to do much for me besides telling me about citrate. When this didn't help, I went to an acupuncturist. To my surprise he helped me a great deal. When I first went to see him I hurt all the time, except when I had my period. Now I'm fine--until I have sex. I'm getting tired of seeing him almost every time I have sex, so I'm planning on seeing a physical therapist with experience in biofeedback and myofascial release for vulvodynia. My insurance won't pay for it, but I'd rather grit my teeth over paying bills than over my sore crotch. If it doesn't work out, I'll be back at the acupuncturist since he really has helped me. Anyone looking for pain relief might consider talking to some acupuncturists in their area. It's been helpful for me, though I still want to try biofeedback.

I was diagnosed with fibromyalgia 8 months ago and I also have tarsal tunnel and morton's neuroma in my feet. This has had me so depessed and desperate for a long time. When I didn't think my life could get worse I got vulvodynia after a bout of anti-biotics and yeast infections. It started out with a frequent urination and a burning bladders. The doctors thought I had interstitial cystitis. I went through test after test and they were all normal. I then started having burning genitals but mostly the burning pain in my bladder. My mom, who has had this condition for 12 years, thought I might have it. She went undiagnosed for 8 years. She gave me all the articles from the Vulvar Pain Foundation and I have since joined. I started the low oxalate diet and started taking calcium citrate. My urologist had never heard of it. My GP has but he doesn't know much about it. I found a obgyn who can help but I can't get into see him until September. This last week my condition suddenly got worse and my bladder and genitals were on fire. I got a hold of Dr. Solomons wife in Denver and she said to stop the cal/citrae and NAG and wait until my urine was tested by them. It will cost $ 400.00 but atleast I will know when my peak times are for release of the oxalate acid and when to take the cal/citrate. I have no quality of life right now and I used to be very active. I used to go to the spa every night and I used to go dancing and was a very happy go lucky gal. My feet keep me from exercising and my fibromyalgia is very painful. When I get up in the morning I wonder if this is the day my bladder starts burning and I have frequent urination. I can barely make it through work every day and sometimes I wonder if I will survive this. I am so very depressed that I can hardly function.

Does anyone else have fibromyalgia along with this condition and do any of you have irritable bladder also?

My 12, yes,12 year old daughter has just been diagnosed with vulvodynia. Her gynocologist says this is very unusual. She hasn't seen anyone with this disorder younger than 16 years old. Does anyone have any information regarding such an early onset? After reading many of the letters, it saddens me to think of what my daughter may have in store for her. She is trying Diflucan as an initial treatment. Hopefully it will work before this worsens. I am just grateful that it has been diagnosed so quickly-3 weeks and only 3 doctors' appointments! Sounds like she's one of the few lucky ones to have this diagnosed so quickly. Thanx for any help you can give. I'll keep reading to find out more information.

Sharon

I have had pain following a hysterectomy. For several surgeries after that it was discovered after each laparoscopy for vaginal pain that the sutures at the top of the vaginal cuff (I don't have a cervix) from the previous surgery were never dissolved by my body but my body formed pockets of infection,granulated tissue and undissolved sutures/granulomas were found to have formed after each surgery. After the last surgery my gyn proceded to remove these granulomas or undissolved sutures with a laser in his office. Everything was going okay untill the last laser procedure. I developed intense pain at the laser site and a discharge from my vagina and belly button. Bacterial cultures showed the same bacteria was culture out of both areas. A catscan showed fluid also. Does anyone know a docter in the Houston,TX area that may be able to help me. My gyn seems reluctant to do anything and I went through several before I could find one that was able to actually discover that it was the sutures. I have genito- femoral pudendal neuralgia (nerve damage) and I'm on some medication that is really helping the pain and sensitivity; Depakote and Pamelor. CAN SOMEONE PLEASE HELP ME? A DOCTER OR ANYONE? HAS ANYONE HAD TROUBLE LIKE THIS WITH SUTURES FOLLOWING A HYSTERECTOMY?

TRUELY IN PAIN AND DESPERATE, NightShade3@rocketmail.com

I have had vulvadynia for the past 6 years or so. My symptoms began after a normal pregnancy and delivery of my son, who is now 7. I did have a miscarriage and DNC before getting pregnant with my son. At first I began to have itching and hives on various parts of my body, which in a short time turned into terrible vaginal itching that just got worse and worse. Altogether I have seen 9 different doctors and did not get a diagnosis until doctor number 6. I discovered that I had vulvadynia long before that, through a magazine article that my husband found. Very few of the doctors helped me at all. I was given steroidal creams, antihistamines, prednisone, antibiotics, tons of over the counter creams, natural remedies and am now taking Elavil for almost 2 months with some minor relief. I've also tried elimation diets and washing my under clothes in an all natural detergent from the health food store. My symptoms have ranged from excruciating pain and itching to pain and itching of a lesser degree that I live with daily. I was not sleeping well at night for a very long time until I started taking the Elavil. I find aveeno soaks and sea salt soaks soothing temporarily. Most of the doctors I saw were well intentioned but, were uneducated in this disease and insensitive to my feelings. I was told everything from go see a psychiatrist, to asking if I had a history of sexual abuse, to go home and "enjoy being with your child." This only added to the frustration I was experiencing. Still there are no definite answers. I even went to NYC(2 hours away) to a team of doctors who specialize in treating this disease. The visit was unreasonably expensive $200 with very little covered by insurance. They gave me no answers either, perscribed antihistemines, aveeno soaks and expected me to continue to come back. I have somehow managed to still have a sex life although it is nowhere near what it once was. I am a member of NVA and have received alot of support and information from my contact person. I feel that sometimes I've been cheated out of the best years of my life. I held off trying to get pregnant after my son because of this disease afraid of not being healthy enough. My symptoms have ranged from acute unbearable attacks of itching(vaginal & anal)pain to more mild daily discomfort with reoccuring yeast infections, boils or cysts that improved with constant use of acidophilus capsules, periodically the hives reoccur with itching on legs, upper torso as well. When my symptoms were at their worst, I discovered a sensitivity to chemicals in new rugs, carpets, new car upholstery and lycra spandex. After all the doctors I went to I ended up going to my family doctor and asking her if I could try the antidepressant treatment(Elavil) as a last resort. She was one of the few doctors I have seen who actually knew of this disease and was familiar with treatments. My husband has been very supportive and understanding throughout all of this and I know I'm very fortunate for that. Feel free to contact me for questions or comments.

I have been suffering from vulvodynia for almost 3 years now. It started one night after douching with vinegar and water. Since then I have had severe vaginal burning. I have been taking a drug called Dapzone along with 20 mg of Prozac. I also tried the low oxalate diet. Nothing has really helped. I must say the prozac keeps me from wanting to kill people but it does nothing for the burning. I am able to have sex with my husband, but like so many others I have severe pain for 2 or 3 days later. I'm lucky because he understands and is supportive. However, I have recently become pregnant and am off all my medications. The burning has intensified somewhat but I am using xylocane which helps for an hour or 2. I am curious to know if anyone has gone thru pregnancy while suffering with vulvodynia. At this point I am afraid to try to deliver vaginally because it might make my symptoms worse. I don't know how I could live with it if it got worse. I try not to think about suffering with this problem my whole life because I get too depressed. Reading all the comments from the other women helps me to realize I'm not alone. In some small way that is comforting. I try to be positive and happy most of the time but when I have a flare up I absolutely can't function. I want to be left alone. I don't want to talk to anyone or deal with everday life. I know things could be so much worse....I could be dying of cancer or any number of things. Does this problem ever go away? I would love to hear from anyone who has gotten over this problem. I would also love to hear from anyone who has gone thru pregnancy while suffering with vulvodynia. I don't know what to expect after I deliver. Has anyones symptoms ever improved after having a baby? My email address is kensmit@statesville.net

I'm a Dutch woman and I'm suffering a lot in my anus specially the right side next to the anal sphincter, its burning, itching, swelling and it feels taut with a dirty smell, like fish, also in the buttock. At least five specialists looked in my bowels and they found nothing. I have had many cures since 1994 like: flagyl, diclofenacnatrium, doxycline, dispers, trisporal and every time it comes back. Does anybody know what this is? Could it be mycosis? Or sort of ignition.

Please if anybody have any suggestions that may help me please write to this address

Mouricio@hotmail.com With kind regards Emmy

What a wonderful web site! It's a relief to know that I'm not the only woman in the world with this problem. I've tried estrogen cream, cortisone cream, treaments with acid, interferon shots, and surgery, with no positive results. I have pain, burning, and itching all of the time, but things get 100% worse right before my period. I also suffer from depression, fibromyalgia, and irritable bowel syndrome. I also have the continuous feeling that I have to urinate, it's as if my bladder can't empty itself all of the way. Sex has been painful for the past six years and because of the pain and frustration I have completely lost all interest in sex and intimacy. My husband is frustrated, but doesn't say too much about it. I feel an overwhelming sense of guilt because I am unable to perform my "duties as a wife."

I'm 40 and have had vulvodynia for 20 years. I've done everything except the biofeedback and the surgery and tried all the alternative treatments - acupuncture, herbs, etc. I've been doing the low oxalate diet and calcium citrate under Dr. Solomon's program for about 8 months now. I've also had CFS and FM for the past 10 years and have followed a mostly vegetarian diet of only organically grown foods for the past 8 years. I am very much opposed to the use of anitbiotics, but during the past year I've had 2 situations where I had to use them and both times I had severe flare ups from the antibiotics. I belong to a great Vulvar Pain local support group and some of our members have had success with the low oxalate diet and/or biofeedback/physical therapy. The biofeedback/physical therapy is next on my list to try. Would like to hear from others on how it has worked for them.

It has been almost two years since I have been diagnosed with vulvadynia. I feel fortunate after reading many of the entries that my pain is not constant. It has, however, halted my sex life and caused depression in my life. I am 24 years old and the symptoms started after 4 months of marriage. My husband and I had both waited to have sex unitl we were married so imagine my grief and shame when sex became excrutiatingly painful fo me. My husband, a med student, has been very suppotive and understanding. Thank God for that. I find it interesting that many people have written about tailbone problems. When I was in college I broke my tailbone - I wonder if there is a link? I also have very sensitive skin and sometimes blame the vulvadynia on the use of a spermicidal lubricant. I have tried Lidocaine and am now on a topical steroid. I dread going to the gyn for fear of the pain and it is discouraging to know that there is not any fast fix. I have read that many people say don't use a steroid. Why? If anyone has any info on this please email me. I am looking for a good doctor in the Dallas/Ft Worth area- any suggestions? It is frightening to think about going to a doctor who might not understand the problem. I am grateful for this web site. I have felt totally alone for two years and have cried myself to sleep many a night. God bless!

Hello everyone! I think this is my 4th entry in this guestbook. I have vulvar vestibulitis and have tried most non surgical treatments except biofeedback because my insurance will not cover it. I am now considering the vestibulectomy but have to fight my insurance company to see my gyn again! I am wanting to hear from those who have had the surgery who have pure vestibulitis and what your results were. My husband and I have been able to have sex twice this year with minimal pain and I currently not using any treatment. What we've discovered is that as long as my clitoris is being touched, it seems to block the pain of my vulva during intercourse. Of course it helps to be in the mood (which is kind of difficult when you have no sex drive!), and to have lots of astroglide. Sometimes I get my hopes up that this thing is just going away by itself, but it seems that this technique only works certain times of the month. Please email if you have any experiences like this or have had the surgery. Thanks-take care!

For the past three years I have had Vulvodynia that went undetected and untreated until I started taking my medical business to Nurse Practitioners. Additionally, I had cervixitis. After treating me for that, my Family N.P. referred me to a WHCNP who figured out the problem, IN 30 MINUTES, after a year of visiting OB/GYN physicians. If you suffer from this annoying and painful disorder, help is out there!

i can't believe what i have found. so many suffering like me. i was diagnosed with vestibulitis in 1990...the year i turned 40. my doctor is renown for his studies on this disease. but i feel he does not know what to do for me anymore. i've tried about everything. the biofeedback sounds quite interesting since i do have a hypersensitive nervous system. my chiro has said for years my pelvic area is very unstable. the trigger points in that area are so hyper and tense when she applies any pressure. i'm positive after everything i've read that this all goes hand in hand. i also have had a neck injury where the nerves are a bundled mess in the lower left occiput area. this was the result of a major car accident in 1988.

i know the nervous system is all related to this pain in the vulvar area. it makes perfect sense to me with the connection of the spinal cord and nerve pathways.

i find relief during intercourse using crisco veg. oil. i apply it before intercourse too. just getting thru the first initial stage of entry is the hardest but the oil really does help. i use all free and clear detergent( 1/2 dosage) to wash panties. i do not eat much meat since my body does not break down the animal protiens very well. then urnination hurts and is cloudy, stringy looking.

i have a distinct pattern now after 10 yrs. it is 100% at the worst a week before my period....if i have a period that month. otherwise, intercourse can irritate the vulva if it is to dry...hence the crisco oil does help.

after all these entries, i have read only one which stated hers was 100% worst before a period. i was surprised to hear only a few of us say that. i always thot it was a hormonal thing and i have been on/off hrt 3 times, tried estrace only, and none of it helped. i would like to hear if anyone else has symptoms like this also if anyone else sees a connection with the nervous system and nerve pathways disrupting the blood flow in the vulva area.

I have been having pain in intercourse for around a year to a year and a half. . My doctor recommended an estrogen cream. It didn't help. Finally he did surgery and laid back the tissue and took out the scar tissue. Some of the Bartholin glands was mixed up with the scar tissue. When I finally recovered from the surgery (around 3 months) I still had pain. I recently returned to the doctor who is referring me to the one specialist in Southern California in the Kaiser system. He gave my condition a name. I was so surprised to find it had a name. I have been searching on the internet for information. It has started me thinking that maybe this all came about when I started using Astroglide as a lubricant. Has anyone mentioned this?

I think this specialist does nerve blocks. I have started using estrogen cream again. It may be helping. I've got to find something since my husband is so thrilled with Viagra. My pain is not unbearable, but it makes me pull back in fear.

It's great to have this site for info. Thanks.

Dr. Glazer,

Love the site! Message boards soon??? <grin> paradise-web is a great, affordable resource for interactive boards. We've eight of them on our site and receive about 200 messages a day. Easy to manage, archive and very affordable. www.paradise-web.com

Jill Osborne IC Network Founder & Manager jill@sonic.net

I just wanted to share with you a treatment that worked for me. I am cured--for now--and hope it's for good. I first ha dpain during intercourse following a yeast infection that I treated with an over-the-counter ointment. It seemed to go away, but intercourse became painful. When I went for my yearly gyn appointment I mentioned the pain to the PA, who did a swab and the yeast was still there. Then began months of various medications for yeast infections, all aimed at ending the pain (which I only noticed during sex or with tampons). Finally, the yeast seemed to disappear, but the pain remained. The doctors at my HMO were cold and discouraging (and they were women!). I was bounced from doctor to doctor and they all seemed to get mad at ME since I wasn't responding to their treatments. One of them without even examining me declared that we should schedule surgery right away to remove the tissue since that was the only thing that would work. Finally I forced my health plan (with the aid of one excellent, sympathetic doctor) to refer me to a specialist. He put me on 5o mg of amitrip, plus soaking in a warm bath for 20 minutes in the moring and at night. I did this for almost 9 months. The medicine made me sleepy and changed my mood a bit. But it worked! The pain is completely gone and has only resurfaced when I had two brief yeast infections. I also have been taking multivitamens, the USANA regimen, but that's been sporadic, so I credit it to Dr. Marinoff's treatment. The experience has given me a new appreciation for good health, which I could never take for granted again. I couldn't believe that at 25 I might never have a normal marriage. So my heart goes out to those of you with this condition, and I want to offer you hope that it can improve.

I am 26 years old and I have fibromyalgia and vulvodynia. I have recently started treatment with Triavil and am hoping that it will help. I have seen so many women write about the emotional turmoil this disorder causes and I'm glad to see I am not alone. For months my doctor told me I was imagining the pain. I made weekly trips to the gynecologist convinced I had yeast infections. Sometimes I did but more often than not there was nothing... or so she said. I convinced myself that I was either dying or crazy, allowed myself to give up on everything. My gynecologist sent me to a psychologist who told me I was suffering from Obsessive Compulsive Disorder and that's why I was obsessed with my health. Finally I found Dr. Benson Horowitz who has made me understand that I am not dying and that there is an explanation for my constant itching and burning and PAIN. I am able to have sexual intercourse if I don't mind the constant burning and stinging that occurs immediately afterwards. I will admit that I rarely enjoy sex because I feel so insecure about my condition. I try to explain it to my boyfriend but I am scared he won't understand and think that I have an STD. I have been on a strict diet and everywhere I go I have people asking me why i don't eat this or that. That's difficult too. They think it's because I'm vain and I just don't want to gain weight...I WISH! Anyway, reading this bulleting board has made me cry several times...I feel so much relief because I see that I am not crazy or Alone...!

Somebody wanted a doctor's name in Dallas, Texas. Please either e-mail me or call me at 972/769-0077 and I'll let you know a few.

This is long, but please, bear with me. I stumbled upon this site while looking up medical information regarding cancer for someone else. I've been suffering symptoms (itching, burning, pressure, pain in varying degrees) in the vaginal region for about four years since having a bad reaction to a bath product. At that time, I treated myself for a yeast infection with otc products-twice-and then was prescribed several different creams-terazol being one of them-by my gynecologist when the pain persisted. That started a horrible year long hell where the symptoms were unbearable. I finally realized that my pain was worse when urination was more frequent and started using Northern Free toilet paper. This helped tremendously and though the problem didn't disappear, the symptoms were milder and more bearable. Over the years, I've gone to three other gynecologists, a dermatologist an internist and various and sundry other doctors and described my symptoms. No one has ever come up with a diagnosis, or even acted as though they'd heard of this before, so you can imagine my gratification at coming across this site. Not that I'm happy that other women are suffering, I just feel validated and not so all alone and feel that there's strength in numbers. The symptoms are ever present in varying degrees of discomfort, and when they're at their worst, are accompanied by an odor and leakage just following urination. Oh, and I also had sustained several severe tailbone injuries, one in my teens and one in my thirties. I hope to be able to find a gynecologist in the Indianapolis area who is familiar with this condition and can diagnose and understand my problem. What has helped me over the years is what I've developed on my own with a little advice and reading. I carry my own toilet paper with me everywhere-Northern Free is the only thing that seems to work for me long term. It can be hard to find, but is definitley worth the effort. Even the hypoallergenic Cottonelle irritates the area for me. Anyway, the Norhtern Free is the first thing I pack for a vacation, and I always keep some in my purse. The soap I use is fragrance free Basis for sensitive skin-again hard to find, but worth it. Often I can find only a facial, not a bath bar. I take this soap on vacations also as some of the most painful reactions I've had have been due to soap products. Of course, I never use any bubble bath or fragrance products in the tub. I use Cheer Free and Bounce Free for all laundry. I wear only 100% cotton underwear and try to keep the slacks I wear at all natural fibers also, as polyester nd nylon can bring on reactions. Back to soap, I've found that I'm allergic to the soap my husband uses (bad vaginal reactions, long term) and need to stay totally away from him-can't even cuddle in bed without bedclothes in between us. My husband has been incredibly understanding and supportive of me though all of this and other annoying health problems I've been suffering over the past numerous years (especially since my hysterectomy in 1991), but he's such a creature of habit that unbelievably enough, he resists changing to my soap, because it's not deodorant soap and it's expensive. I'd like to ask if anyone knows a good doctor for this in Indianapolis? Also, how have other women found out that they have fibromyalgia? I have an appointment with a doctor who specializes in this condition to check this out, but it's not for two months. I looked fibromyalgia up after reading letters on this site, and found that I have most of the symptoms, but not all of the pain points described. Anyway,as I say, I've been to lots of doctors, described lots of symptoms, and never had a diagnosis of anything. Luckily, I believe in myself and never thoought I was crazy, but was totally mystified as to what could be wrong with me. I became vegetarian about three years ago in the hopes that it would help, but have had llittle to no abatement of symptoms. Thank God for the internet and thank you for this site. Please e-mail me at jeveronica@hotmail.com and good luck and God bless. Jeanne Elizabeth Veronica

Well I knew this couldn't be all in my head... chronic yeast infections for many years - check lower back problems (herniated disk) - check so what is the connection with Vulvodynia? For me the symptoms have sporadic but always when pressure is applied to the vagina (intercourse or just tampons, etc.). I've just discovered this site - my next stpe will be to get in touch with my gynecologist (wish me luck!) as, although I have not been diagnosed with Vulvodynia, I'm pretty sure this is my problem. I would be very interested in getting any information anyone has on the low oxylate diet, possible sympathetic practitioners in my area (Pittsburgh, PA) and would love to correspond with anyone who has had experience with Vuvodynia and Vaginismus...

Thank you all for sharing your experiences. I have had vulvar pain for almost 4 years. There are three things that I have experienced that I ahve not seen mentioned in other entries. If anyone has experienced these things/has information please contact me! 1) sharp pain in my clitoris and in a piece of skin leading to my clitoral hood. 2) burning in my vulvar tissue before/as I start urinating 3) my discharge frequently looks as if I have a yeast infection, but if my discharge is in water (when I take a bath, for example, this happens) the white discharge turns out to be thin sheets of cells--it looks like dead skin layers or something. I would greatly appreciate any reply. Power to you all.

Thank you for this page and thanks to all guestbook writers for your comments. About 1,5 years ago I started to experience a burning pain when having intercourse. It took me some time to have the nerve to visit my doctor. Luckily she responded very positive and took my symptoms seriously. First I was treated for a vaginal infection, which at first seemed to help. For the first time in months intercourse wasn't painful. I felt great, but unfortunately the result didnt' last. Next time, the pain was back again. With my second visit I got a vaginal cream which I had to apply twice a day. My doctor thought my vagina and vulva were just irritated by the infection and that a period of abstinence and using the cream would do the trick. It didn't. I went back to my doctor, months later. She examined me again and gave me another treatment for infection (diflucan). This didn't work either. Demotivated by the whole thing it took me again months to go back again. This time my doctor decided to take things one step further and referred me to a specialist clinic for sexuological related medical matters. I visited the doctor there today and discovered that my condition is probably a condition she called focal vulvitis. My pain focusses on a ring at the entrance of my vagina where some parts of my hymenal ring are still left. Thinking back, it all must have started long before. I never got used to using tampons, it hurt me to much. Now I realise this must be related to my present problems. I've also had burning pain urinating when having my period. I've had this as long as I can remember, so I never thought anything of it, it was normal to me. When I read your stories, this must all be related.

Today I visit the doctor at this clinic. She proposed combined sexuological and medical treatment. I will be making an appoint for my first visit tomorrow. She explained that the pain started a vivious circle where pain causes stress, which causes tightness of the muscles which can make the pain worse. At first I got a bit angry because she jumped right over my physical problems and made them psychological. She responded to my anger immediately and explained more on the medical side of it. I agree with her that there is a vicious circle but would like to see work done on the physical as well as the psychological aspects of it.

When I read all your posts, it opened up a whole new world for me. I think myself lucky that I only have pain when having intercourse (or in fact when penetrated). I'm glad to know I'm not the only one with this problem and I hope to correspond with women having problems similar to mine. It is not a subject I can talk about easily, with friends or relatives. I'm very happy that my boyfriend (of 7.5 years, my first and only one) is very supportive. He responded very well, even when abstinence was necessary. Now we only have intercourse once every two months, when I really, really feel like it. In the period in between we do make love, with lots of cuddling and caressing.

I hope things will get better with the new treatment. For now my doctor adviced washing my vulva with just water and using some baby oil to keep things soft. I will start with that.

If anyone wants to email me, please do so. I'm especially interested in Dutch women with the same problem. Maybe we can give eachother advice on specialised doctors etc.

Thanks again, Danielle

Dear all,

hank you so much for sharing your experiences and feelings. I discovered this site yesterday and it was a relief for me to read all the messages of woman experiencing the same feelings I have. I am Dutch (the Netherlands), 27 years old and am suffering from VVS for three years. Made my diagnose (VVS) yesterday when reading all this American information on the Net, because in the Netherlands hardly anyone seems to know this syndrome. There was one article in a Dutch newspaper, where two "specialists" were quoted saying they think the cause of VVS is having sexual intercourse when you do not feel like it. "It occurs with girls who are afraid to tell their boyfriend they are in pain when having sex" and "they just go on having intercourse denying all the symptoms". This supposed to be the specialists in the Netherlands!!!!!!!!!!!!!!!!!!!!!!!!

All of you will tell this is total nonsense. My history: three years ago I felt a burning and itching pain at the outside lower half of my vagina during having sex and when urinating. My doctor told me I probably did not love my boyfriend enough anymore. Then she started describing all the creams you all seem to have started with. I had to ask her to send me to a gynaecologist.

The gynaecologist discovered vaginal WRATS [condylomata accuminata] (Did not read this in any message of you!) and treated me with burning them away (cryo therapy] in four sessions.

Then the pain started and has never been away. On my last visit my gynaecologist (who never diagnosed VVS!) told me it was some kind of "monday morning" disease of woman having a rough weekend...I told her I did not want to see her again.

Does anyone know someting of organizations in EUROPE I could go to?? And if the Biofeedback device is available in EUROPE? Please help me getting more information! Really waiting for comments from you so far away in the USA!!! My mail address is : karpaten@freemail.nl Maria

My wife is having problems and pain that appears to fall in the category of vulvodynia. She asked my to send in the question and find out if there might be a Doctor knowledgable in this area, in the Houston or surrounding area. Dallas or Austin would be workable.

I have been experiencing the symptoms of vulvar vestibulitis for 7 months now. My doctor has me on 0.1% steroid cream now, but I have been on estrogen and estrogen cream. My symptoms seem better in the morning but worsen as the day goes by. I am getting very frustrated and discouraged. The cream doesn't seem to be doing much. I'm considering trying the low oxalate diet or something else. The pain causes so much discomfort that I dislike even putting the cream on--how will my nerves and muscles ever calm down when this upsets me so!!?? I keep thinking awful things like I will never have normal sex or be able to have children. I'm almost 29 and this is not at all appealling to me! I'm glad your providing this page and the information it contains though-I will have to browse further for some hope.

Hello. I am so happy to find a way to reach other women with vulvadynia and vestibulitis. My condition is virtually cured and I have been wanting to share what helped me with others. I was diagnosed with vuvlvadynia in the fall of '96. I now realize I actually had vestibulitis. I went through the agonizing experience of feeling that I was the only one in the world who had this and that there was no cure. After going to many different healers and Drs. who didnt help, I finally started taking Paxel (an antidepressant) in March of 97 as a last resort. Then, in April, just as I began to feel suicidal, I started seeing an acupuncturist who works with needles, chinese herbs and a process called "color puncture": colored lights applied to acupuncture points. My practitioner, Praveeta Rose, was confident that if I went off the Paxel she could cure me in 4 to 6 weeks. Having been let down by so many practioners, I did not believe her but liked her confidence, so gave it a try. Within 2 weeks, the horrible, profuse discharge I had had for many months went away. Within 2 months, I was having intercouse with only mild discomfort. By the end of summer, I was having intercourse with no pain, wearing whatever clothes I wanted, riding bikes and feeling like a normal human being again! I have had mild relapses about every 6 months since then but one visit - or just waiting it out- and the pain goes away. I know that acupuncture and color puncture may not help everyone but it sure saved my life. Feel free to email me for more information.

Although I'm not a sufferer from this condition, I have a friend who is, and I've helped her by soing extensive research. I think one of the problems here is we cannot assume everyone's vagina hurts for the same reason. In my friend's case, she had had cortisone and antibiotics for other conditions. She had extensive candidiasis, Crohn's, and liver problems. In being treated for vaginal itching, she became irritated from all the things she put "up there" to try to help the itching. As usual, GYNs said they couldn't find yeast in the vagina after all that. My friend is fortunate to have established contacts with well respected alternative physicians. She's having her allergies tested, read all the books on candida, called Dr. Crook's hotline about candidiasis, going to the nationwide expert, allergist Dr. George Kroker in LaCrosse, WI. She's also being tested for mercury toxicity. I know, regular MDs do not accept this, but I have known a number of people, including my dentist, who are mercury-toxic. Apparently it suppresses the immune system among other things. I advise anyone with vaginal itching and pain to definitely read every one of the new books you can get your hands on on the subject of candidiasis, just to understand it, because my friend became much much worse on the pill due to the effects of female hormones on the tissue and the yeast. Then, I would advise you to get one of the new books in the bookstores about allergy. Learn about the immune system. You're right, you have to become your own expert. Reading your letters sounds like some have contact allergies, others have other things. But it breaks my heart to hear of people having their bodies cut upon before they have this other information to help them make a decision. Of course, you might get to an M.D., like one my friend consulted, who said she couldn't have systemic candidiasis because she didn't have HIV. You have to have the courage to find good treatment and be able to withstand the disdain of certain professionals who ccan't help you, but don't believe anyone else can. On the other hand, you have to not just throw every alternative herb down (or up) your body without some thought about why--or at least consider that you could possibly be allergic to some remedy or it could be irritating. I've looked up MEDLINE on the internet and found evidence that some vaginal treatments can result in long-term burning. But I firmly believe the immune system is a part of this for many of you--those who haven't found some quick contact allergy or such-- and I hope you get to a good medical center, having called first to ask who in the department of immunology might treat such a thing. Sometimes you can get to talk to his/her nurse and find out a lot. I'm not guaranteeing anything, but just explaining that when the immune system isn't fighting off something, it might be money well spent to go to that kind of specialist. Also, you may want to practice with some of the relaxation tapes. Best of luck,

I DO NOT OWN A COMPUTER YET, BUT I WOULD LIKE TO LEAVE MY ADDRESS FOR OTHER WOMEN WHO SUFFER FROM THIS CONDITION AND WOULD LIKE TO TALK WITH SOMEONE ELSE. MY ADDRESS IS NICOLE REHRAUER, 2110 MEADOW CT #3, WEST BEND, WI 53095.

I am not sure if I have this or not. After the birth of my 1st child 9 yrs ago, I started having painful intercourse. i thought it was just that my episiotomy did not heal correctly because it was on my left side, just inside but it continued on even after the birth of my second child. This is very depressing and we have not had much of a sex life since.

I was diagnosed with vulvodynia (or focal vestibulitis which I understand is more or less the same thing) about 8 months ago after suffering from various symptoms, but mainly painful intercourse, for about 5 years. This condition seems to be even less recognised in Australia than it is in the States and other countries and, as a result, I had a very frustrating time doing the "doctor circuit" for years. I was treated for supposed chronic yeast infections with diflucan and a cream known as "Canesten" in Australia - with little or not effect. About two years ago (before vulvodynia was actually diagnosed) I was put on Tryptanol nocte (an anti-depressant) on a dosage of 40-50mg per day. This seemed to help a little bit for a while but ultimately sex was still painful. In addition, I felt the medication made me tired so I stopped taking it 6 months ago or so.

Recently I signed up for Dr Solomon's low oxalate and calcium treatment. I have yet to receive my test results and treatment program but I hope that this will be helpful. I am depressed to read, however, that many of the contributors to this web page have not had much success with this treatment. I have also been applying ovestin cream daily and trying to do a program of pelvic floor exercises.

I WOULD BE VERY INTERESTED TO HEAR FROM OTHER SUFFERERS IN AUSTRALIA WHO CAN RECOMMEND GOOD HEALTH PROFESSIONALS WHO DEAL IN ANY ASPECT OF TREATMENT FOR THIS CONDITION (INCLUDING BIOTHERAPY ETC). I live in Melbourne so am particularly interested in any one with information on doctors in that city. I can recommend a good doctor based in Perth for anyone who is interested.

I am very grateful for this guestbook but it makes me angry to think that, with so many women suffering who have such similar syptoms and medical backgrounds, the condition is sill treated so dubiously by medical authorities, at least in Australia. I am also sad to hear that many of the supposedly helpful treatments don't help many women. I can only hope that many of those who have been cured simply haven't contributed to this guestbook.

To know there are so many others who suffer as I do, is overwhelming. My last doctor's visit, was to give me advise to go home and to "just let it go". I have also told to "put hand cream on it". I contracted this condition at the beginning of 1996 through firstly being given a medication for a thyroid condition (I have since found out I did not need the med.) and having a life threatening reaction to the medication. Then came repeated bouts of cystitis/bladder infections and of cause anti-biotics, continual repeats of thrush and candida and the medications that go along with them. After reading the many heart-breaking stories that have already been added to this site, I would like to add my bit. I have NOT HAD ONE bladder infection since my sister-in-law told me about Cranberry juice. I have one medium to large glass of juice with my night meal every day. Only the Cranberry WITHOUT added fruit juices will do the job. I have also had a lower back injury and am currently suffering with sciatica which I find inflames the vulva area. By lying on my back with a rolled-up-towel under my tail-bone to gently ease apart the lower back, I have found gives me some relief. It is not a cure but any tiny relief I feel also gives me a emotional boost. I have found that anything that has an adreneline effect eg. medications, coffee, tea, chocolate, strawberries also cause the inflammation to intensify. Each day I am taking 4000mg of Vit C/Calcium, and 2 grams Acidophilus and applying small amounts of aloe vera gel to the inflammed area. I hope as we all do that the day will come where there will be a cure found.

I have a friend in the United Kingdom diagnosed with vulvodynia. She is an older woman and needs to find some contact group / professional organisation for help and support in the UK. Please can someone email me so I can help her forward. Thanks mike@encaustic.demon.co.uk

Dear colleague Howard, forced by vulvodynia patients we are just establishing a vulvar pain website in germany to gather women suffering from that disease and to exchange experiences. Just by chance i stumbled into your website and I am very glad that this exists providing such an neormous amount of information. Congratulations to your attractive and successful website! This will encourage our own striving. I do hope that we may establish a link from our future website to yours. Yours sincereely Dr. Walter Dmoch, Dsseldorf (Germany)

It has been awhile since I looked at this guest book. It never fails to bring tears to my eyes to see so many women suffering from this condition. I think the most frustrating part of it is that even though so many of us suffer from this, so few of us get the care and attention from physicians that we deserve.

I am 26 years old and suffer from vulvar vestibulitis, vulvodynia, depression and fibromyalgia. Dr. Glazer's web site and the vulvodynia list serv has been an invaluable resource for me. Many of you feel that you are alone, but you are not. I invite each of you to join the vulvodynia list and participate in our group.

I wish you all pain free days!

Love, Heidi

I would like info about a Low Oxylate diet

I am very interested in more information about this disease. I have had chronic vulvar itching and clitoral pain and tenderness for almost two years. I have been to many doctors and found little or no relief. My hope is to somehow find a physician familiar with treating this sort of thing so that I will not feel like I am constantly hitting my head against a brick wall. Any help you could offer would be greatly appreciated. I am in the Seattle area and moving soon to L.A. Any suggestions? Thanks.

Hi. I just recently stumbled upon Dr. Glazer's website about Vulvodynia. Most of the symptoms described are ones that I have been experiencing for the past 6 years. However, one symptom that I have not seen is this: Whenever I have an outbreak, along with the itching and burning, I get what I like to call "cuts" or "cracks" in the vaginal skin that sometimes leave small traces of blood on the toilet tissue. Has anyone else ever experienced this? It can be very painful when bathing or urinating. Please e-mail me at melb229@aol.com. Thanks.

Thank you Dr. Glazer! I am so glad to be able to read I'm not alone out there. I've had Vulvodynia for roughly 3 years, and until today, it's been undiagnosed. I have been to doctor after doctor with the usual results - "it's in your head", bladder infections, fungal infections but no relief. My family doctor has been very sympathetic, but didn't know what was wrong. I have been feeling as though I was crazy - and as you all know the stress this puts on a marriage is incrediable. My doctor had seen me last week, and has arranged for yet another uraligist to see me. Then, today, in the mail came a note from my doctor with an article on this condition and it describes me to a tee. I now have some hope! NO RELIEF YET - But at least we can start a treatment. If anyone would like to discuss further, please feel free to email me at Razorsedge1@Juno.com. Good luck to all and thanks again the Dr. Glazer - but get to work and find us a cure!!!:)

I just found this web site and am very excited to meet you in the chat room!! I was diagnosed with vestibulites 5 years and 4 doctors ago. When first diagnosed, I could no longer wear jeans, had gone without intercourse for 2 years and had trouble sitting for more than 15 minute intervals. The pain was very intense and I felt at my wit's end. Fortunately, I found a talented caring physician who spend countless hours working with me.

Following many unsuccessful attempts for relief through creams, ointments and various other medications, I had my first surgery for vaginal gland removal in 1994. To date, I have had 3 surgeries for vestibulities related symptoms. Recently, I had a 4th surgery to remove a cyst and scar tissue. With each surgery, I made improvments and, today, am virtually pain free.

Unfortunately, this disease took a real toll on my life, including contributing to the failure of a marriage. I felt very alone and scared that I would never feel well again. This web site, and accompanying chat room, is the perfect arena in which to share concerns with others battling the same illness. In addition, it will be exciting to learn from Howard about new treatment options.

Today, I am happily remarried and just discovered I am expecting our first child. While I still have routine check ups and sporadic pain, I truly believe I am cured!! I look forward to meeting you!!! More than anything, I want you all to know that this devastating illness can be conquered (or at least managed) with the right determination and care. Lisa

Hi! my name is Chelle, I have been diagnosed with vvdynia for 2 months and find it very difficult to deal with. I got married 3 and a half months ago and a month after the wedding i colapsed in a heap with intense stomach pain and went to the doctor. I was probbed, told it was all in my head and then after being refered after 2 weeks I saw a gyno and he knew straight away what it was, tested all my symtoms and sat me down and explained to me exactly what was wrong. He as wonderful and reassured me that it was not my fault and that it was treatable with time and physio, I haven't been to physio yet because it embarasses me to have other people touch my body besides my husband. My husband has been quite understanding but gets angry with me some times because he can't touch me. The tablets the doctor put me on for the pain whack me out, I'm tired and have to drag myself out of bed in the morning to go to work. I have a great job with a radio station in promotions and need my personality to work but the tablets make me moody and irratable so I stopped taking them and just live day to day. I would love hear from others I am only 24 and it's not easy at the moment so if you have any ideas please send them to Chelle Promotions Manager po box 148 Bunbury 6231 Western Australia thanx for listening

My wife recently has been diagnosed with vulvodynia after 4 weeks of agonizing pain which still continues. Her GYN has just started treatment with LIDEX ointment and Atarax tablets. This helped for 48 hrs, then the pain returned with added nausea probably from the Atarax. Can anyone provide us with some help and direction. This all started after my wife had a Kidney stone. Thanks

Can anyone recommend a vulva specialist in Tampa, Florida?

Thank you all for sharing and Dr. Glazer. I did not know what I had but after reading this, I now know. I am going to try some of the suggestions and also tell my doctor about this. I am 47 years old and have had this pain for about 3 years now. I had a bad fall when I was 12 years old and have a weak back. I have also had a HYSTERECTOMY and 12 years after the hysterectomy they went in and took out a lot of scar tissue because I was having this pain but the pain did not stop. I have stinging, burning and pain (especially when I have sex which most of the time I am not interested in anyways. I have a great husband who is very patient with me.) I used to have yeast infections all the time and almost stopped urinating when the doctor found out the top of my bladder was almost closed and he opened it up so the infections have went away but I still have the stinging, burning and pain which seem to be getting worse. I also have pain is in front on the right side of my stomach by my hip, and travels down through the vulva and down my inner thigh, but only on the right side. Which makes me wonder if it is scar tissue irrating the nerve. I also have lower back pain. My doctor sent me to a Pain Clinic and they had me do the nerve block (twice) which helped for awhile but then the pain came back. I have gone to a chiropractor and that did not help. I am going to try the diet and vitamins because I believe in vitamins and the I might try accupuncture. Again, thank you all.

I have Lichen Scleroses and what I can read it seems to be the same as Vp. For relief my Dr. perscribed Triamcinclone oint.

My Dr. told me I have Lichen scleroses and from what I have been reading it is the same as VP. The treatment that has been perscribed has help a lot . I stll can't have sex, as I am closing up. I have to streach it every night and pull it apart. My urethra is tucked under and takes a very long time to urinate. I will be going in soon to have that taken of. So ladies take care of your self, don't put it off.

I am 39years old. I am going through a divorce(after 16years). You can probably guess what has caused us to get a divorce. The entire 16 years I have dealt with vulvodynia. However this has not been the only medical problem. Two weeks after marriage I devolped "honeymoon cystitis". During the course of the marriage I have been diagnosed with IBS,infertility(we are blessed with one child), hypothyroidism,hyperandrogenism,Type II diabetic,femoral neuropathy with destruction of myelin sheath,hypersomnolence,bulging disc@5-6, 3-4,6-7,irritation of nerves @L4. I have had 14 surgeries to correct various problems, two were for the vulvodynia,with no longterm relief. I did get wonderful relief for about 2-3 months in 1982.After having dermoid cyst removed off of left ovary,and left ovary removed,I was able to experience a normal relationship. When I got pregnant symptoms came back and have never experienced that relief again! It is good to have a website that allows women with this problem to find they are not the only ones with this problem!

Stumbled across this website from an internet news posting, Mayo clinic. Never knew my condition had a name. As most, I've been thru the doctor routine, the history of yeast problems and other related health issues, for twenty years now. For the past seven, I've chosed a different route - exploring metaphysics, the emotional and mental connection to physical problems. "Heal Your Life" by Louise Hay is an excellent primer on the subject. I began digging in my own past, looking for connections between my emotions and my physical problems, and have faced some pretty ugly stuff. I've noticed in the comments here only one person relating their problem to trauma. I do believe most of my problems relate to my past - I was raped at 8 years old, among other things. The more I have confronted those issues, the less problems I have. Metaphysically speaking, vulva problems relate to vulnerability. My worse vulvodynia flare up was during my divorce, I moved to a strange city and was living alone for the first time in my life, and scared as hell. Of course, my gyn said it was the soap, in my mind, the toilet paper, etc, etc. I use Cheer-free detergent, rinse everything twice, wear cotton panties, try to limit sugar intake, try to keep my immune system up to par. I have noticed a sensitivity to sanitary pads and panty liners. I've recently read Dr. Candace Pert's book "Molecules of Emotion"; science/biochemical research is beginning to shed quite a light on the mind-body connection. It is well documented that emotional/physical trauma settles deep into muscle tissues and can cause problems later. More excellent reading: two books by Carolyn Myss "Why People Don't Heal and How They Can" and "Anatomy of the Spirit". She explores our relationship to our past and its effects on our bodies, but from an energetic viewpoint. So, I've been on this inner journey for what seems like an eternity, but do believe I am making progress. I am more at peace with myself and with life in general. I hope by sharing we can help each other.

Please allow me to commend you Dr. Glazer, on this wonderful website. I was very eager to share my success story with the many sufferers out there, to let them know that there is hope. My experience with vulvar pain began at age 24. The symptoms,such as burning and sharp stabbing pains began. Fortunately enough, my pain was upon contact only. I understand that many of you experience horrific pain and burning all day, every day. My heart goes out to you. Little did I realize at the time what was ahead of me. A mere pap smear would send me through the roof. As would a tap of a cotton swab. Unfortunately my pain and symptoms were not substantial enough to convince any physician in my area of Upstate N.Y. To make a very long story short, I was desperate for a diagnosis. So there I went, doctor after doctor, telling my story. Needless to say anytime I would mention that I was having pain upon intercourse, they were always quick to ask if I had been molested as a child, or if I had been raped. Do you drink? Maybe, you don't feel attractive? Are you sure that you were not raped or molested? Just a plethora of stupidity! The list goes on and on. Lo and behold ! I found a female practitioner who was willing to listen! I must say this woman was very patient with me. Test after test,and nothing yet. After a while I think that she was starting to wonder if things were all in my head as everyone else had. Before giving up on me entirely she turned me over to one of the physicians in her group. Three years later, at age 27, my prayers had been answered. I had a diagnosis! Vulvar vestibulitis. With this newfound term reffering to chronic inflammation, I ran to the library, only to find that my future looked grim. But I refused to give up. Now armed with some knowledge on my side, I figured that I would keep doctoring until Ifelt comfortable , not only with the physician, but with their method of treatment. In the course of a year I did not have much luck. Mainly it was more like process of elimination. Elavil, low oxalate diet, cremes, refusing laser surgery, refusing interferron shots etc. etc. Until a friend had read a story in good house keeping magazine about a woman that had V.V. from age 11, suffered almost her entire life, and ran the gamut of doctors and hapless surgeries. The light at the end of her tunnel happened to be Dr. Stanley Marrinoff in Washington D.C. A man that I would soon be contacting myself. In the following months it was the fall of 1994 that my appointment with Dr. Marrinoff was approaching I was very excited to be going, at the same time I was trying to prepare myself for disappointment. Well, I think that I was everything but disappointed! Ifelt very comfortable in his care, and thought that he was very, very, thorough. According to Dr. Marrinoff, I was definately a candidate for surgery. By then I was ready. Everything else was eliminated, and I felt that I was making the right choice. So, in the summer of 1995 my very patient husband and I made the seven hour drive back out to Washington, this time for my surgery. We were planning to stay close to Columbia Womens Hospital where Iwould be going in as an outpatient for my vestibulectomy with vaginal advancement. Please allow me to tell you that my surgery was a success! Believe me, Icould not have told this to you right away. I had many mental and emotional obstacles to overcome. My fear of pain was far worse than any physical pain that I have yet to endure. I think that over time our minds can forget pain itself. But it takes our minds longer to heal. Today I am feeling great and am taking things one day at a time. I truly feel that I am 90%. Don't worry I will make it to 100! God Bless all of you that are still suffering out there my prayers are with you. God Bless you Dr. Marrinoff, what would we do without physicians like you and Dr. Glazer who are taking an active role in helping thousands of women who are suffering from this profound disease? Keep up the good work!

Words cannot express my feelings at finding this website. Four years ago I was going out of my mind with vulvar pain and not being able to find anyone to help me, let alone talk to. Finally, I found Dr. Foster, at Johns Hopkins University Hospital in Baltimore. He started me on desipramine and finally, at 150 mg, I began to have relief. Today I am pain free. It was the most harrowing ordeal of my life and one I shall never forget. I cannot tell you how many gyns incorrectly diagnosed me. It is my personal feeling that my vulvodynia was a result of an anti- fungal cream used to relieve a yeast infection, although I know that research is still going on today. I would say to all woman out there that are going through this horrible ordeal that there IS hope, in one form or another. I am proof that it can be "cured" and you can live a normal life.

I had my vestibular glands removed in 1994, without being informed of other alternatives such as EMG biofeedback. I still have some uncomfortableness and pain in my vulvar region, and am frustrated that I now have no lubrication due to the removal of these glands. I am interested in learning and participating in the pelvic floor strenthening and relaxation exercises to try and relieve the remaining symtoms that I have. I would like to know of any MDs or allied health professionals who specialize in the treatment of vulvodynia that are practicing in the state of North Carolina. I am also interested in learning more about this specialty area, and participating in training in this field of study as I am a physical therapist. Perhaps this is my calling to assist other women in trying alternatives such as EMG-biofeedback prior to engaging in surgery.

It is amazing to see how many women experience the same symptoms and are helped by the same methods -- and yet the most common problem I notice on this website is that most gynecologists will not believe our pain is real, and remain uneducated about vulvar vestibulitis -- and, worse, uninterested in becoming educated.

Anyway, I want to share some HOPE with everyone. I had daily vulvar pain for about ten years and found intercourse unbearable -- and now I experience no pain throughout the day and only a little pain upon intercourse. I can now have intercourse every night if I want to! So this thing does sometimes GO AWAY! Here are the methods that have helped me:

1) The thing I have found most recently that has helped my pain go from a little to practically none is acupuncture. It sounds crazy, but it really does help and I highly recommend it. It took 3 weeks (going once each week) to see any difference at all, and 4 weeks to see a lot of improvement. After six weeks I will go once a month to keep the pain away. The needles do not hurt that much at all; it's well worth it. (They do not put needles in or near your vagina! They go in your arms and legs.)

2) Many women with vestubilitis also have a history of yeast infections and are sometimes not helped by diflucan, etc. I had a low-grade yeast infection for many years; 5 gyn's I went to didn't notice it. We all know to cut sugar out of our diets, but I've recently learned (through my acupuncturist) that cutting out wheat helps as well. I didn't believe it till I tried it. I don't have a big yeast problem, but I do have IBS (irritable bowel syndrome) As soon as I stopped eating wheat, my IBS completely cleared up. I had a hard time not eating bread or pasta, but found wheat-free versions are readily available at health food and some grocery stores -- look for spelt bread and corn, quinoa or spelt pasta. Tastes basically the same as the wheat stuff. AN EXCELLENT RESOURCE IS THE BOOK "THE BODY ECOLOGY DIET: RECOVERING YOUR HELATH AND REBUILDING YOUR IMMUNITY" BY DONNA GATES. You can order it from the internet bookstore, Amazon.com.

3) I always share this even though no one understands why it made my vestibulitis clear up. I'm hoping some researcher somewhere will use it to explore a new treatment: my pain went from almost constant low-level pains and extremely painful intercourse to no daily pain and mildly uncomfortable intercourse because of one accidental thing: I was diagnosed with HPV (although they haven't found any since) and had cryotherapy, which is freezing the HPV cells and letting them drain out through the vagina; the mild bleeding lasts about two weeks. During those two weeks of vaginal bleeding, the pains disappeared completely and never came back. That was two years ago. The blood apparently cured the vestibulitis. I had "classic vestibulitis," two bright red spots that you could see. They're gone. Would any doctor perform cryo for no other reason than to see if it eradicated vestibulitis? I have my doubts, but it may be worth a try.

I just want to make sure everyone knows about the National Vulvodynia Association, P.O. Box 4491, Silver Spring, MD 20914-4491, and the Vulvar Pain Foundation, P.O. Drawer 177, 203 1/2 North Main Street, Ste. 203, Graham, NC 27253 -- both excellent sources of information. Also, we have a support group in the New York City area; call 201/947-3222 for more info.

My heart goes out to everyone with this mysterious and misunderstood condition. Don't give up hope. Wishes for good health to all!