      |
|
|
 |
View our archived
guestbooks here
Contribute to the current guestbook here PLEASE NOTE |
|
CommentAs co-designer (along with Dr Perry) of the Vulvodynia web site, I am happy to see the enormous response. I hope that people continue to enjoy the site and find the information they need quickly and easily.
CommentJust testing to make sure the new guestbook is working. Wishing everyone Happy Holidays and a pain free New Year.
CommentHi- It's been quite awhile since I wrote in here, but I saw my gyn lately (actually the nurse) and she prescribed a topical ointment called Nystatin and Triamcinolone Acetonide Ointment, USP. My main symptom with vulvodynia is itching a I use the ointment when I get flair-ups. Also, these last few months my peroids have been more intense: heavier and cramping for longer, even cramps when I'm not on it. I'm only 20, but I think I may have endometriosis. I also get constant yeast infections, which is another symptom. I will see my gyn in 2 weeks. I'm wondering; is endometriosis common in women with vulvodynia? Do other women with vulvodynia have constant yeast/bacterial infections and/or intense, painful periods?
CommentHi, I have suffered chronically from vulval pain and a burning sensation for almost a year now.I have had so many tests that its beyond a joke now. Also I suffer from lower back pain and am currently being treated for this condition as well. I have had treatment for thrush even though the smears were negative, been on anti-candida diets, months of Nizoral and tryptonal to try and alleviate this horrible condition. My local doctor put me onto this website on the hope that I may find out some more information on vulvadynia. I hope someone out there can give me some good tips. I am desperate!!! If there is anyone out there from Sydney Australia with the same problem please conttact me.
CommentI have been dealing with pain and recurrent bladder infection all of my life. I am 45 years old and in the past few months have gone to the gyn and urologist over and over again. It all started with a rx of penicillen given to me for an infected tooth. Now I have been diagnosed with a third bladder infection with yet another bactria, I can't even spell (clipsiellia?). This one is not sensitive to anything but cipro or macrodantin. I am allergic to macrodantin I get violently ill. So I have to try yet another round of cipro.(very expensive)I also had a bx of my vulva and it tells a story of lichen simplex. I have it on my scalp and my vagina. I wonder is this something you can transmit to another and can it get worse. What is the right course of tx. I dont' want to test a bunch of things and all make it better only to later make it resistent. Any answers I would really appreciate them.
CommentHello, everyone! Every time I read those guestbooks, my eyes are full of tears. But it's the only way to be informed. My story is quite similar to the most of posted. I have been suffering from vulvodynia for one year, so I didn't get to the antidepressants phase yet. The only thing that worked (but temporarily) for me was boric acid. My first relief lasted for about 3 weeks. It was in July. The second relief, which is just ended (unfortunately) happened after I used Gyno-Travogen Ovule (Isoconazole nitrate 600 mg). This anti-fungal is only used in Europe, as far as I know. Again this incredible, exciting, unexplainable piece of happiness only lasted for 2 weeks. I have several questions, maybe somebody has the same specific problems: 1) Has anyone experienced some relief from acyclovir, famvir, etc. What regimen, if so? 2) Nobody tells about clitoris area and it seems to be the worst spot (ironically) of pain for me. I have a strange small red bump and red swollen surrounding area on one side. It located just below clitoris towards vagina. It appeared first after I had Doxycycline about 10 months ago. When I have relief this area turns to look more normal, but it still there. What can it be? 3) My pain "travels". Sometimes it feels mostly in this red area (see above), sometimes it shifts completely down to the opening. I also experience very devastating pain around my anus and deep inside the rectum. Who has any connections with hemorroids? Maybe it is some link? My last question for this time is about doctors? Does anyone know the best ones in NYC/Brooklyn/Long Island area? I am really proud of your strength, patience and energy to fight with this awful condition. Where do you get some? I am afraid to loose the hope. Thanks to anybody who answers my questions.
CommentI am 21 years old and have suffered from vulvur burning and extreme redness for five months. I have been to 5 drs who have ruled out yeast infections and STD's. I have had one biopsy which was "unremarkable" but am having a second biopsy done tomorrow because the first biopsy was not taken from the right area. I have two questions. Do most vulvodynia sufferers have extreme redness in their entire vulvar area?, and does anyone find that their pain worsens as the day moves on, especially when the area is damp? I have found that Gold Bond powder keeps the area dry which minimizes the pain. Please write me back, if you get a chance.
CommentI recently discovered your web-site when I was complaining to a friend of mine that has had terrible vulvar problems. She informed me about different web-sites with information and told me that my problem was not psychological and that I needed to know that millions of other people are experiencing the same thing as me. My situation began about 8 months ago when my boyfriend and I were in Hawaii on vacation. We had a very active sex life and it had always been pain-free with everyone I had ever been with. Never ever had a problem before and had a very high sex drive. However, I began getting urinary tract infections after intercourse (which I had always thought was because I didn't go to the bathroom right after sex), so I decided to get a check up to make sure I didn't have a larger problem. I took the over the counter urinary tract medications to stop the immediate burning sensation and then thought that was it. However, when I went to Hawaii, we tried to have sex and it was incredibly painful. This had never happened before so I didn't understand why. I thought maybe I had a sist or something large blocking the area because it felt as though there was no possible entrance for my boyfriend to penetrate me. When I went to the doctor she said everything was fine with me and that we should continue to have intercourse. We have tried and tried and almost every time it is incredibly painful. I don't know if I actually have the problem that has been referred to here, but it certainly sounds like I have some of the symptoms. I don't have pain any other time but during intercourse. We try lubricant and it helps but not good enough. I feel very raw and incredibly tense right before he is about to penetrate me. I am not sure if it is now psychological - I started questioning if my boyfriend even turns me on anymore. There were times at the onset of the problem where I had pain going to the bathroom where it wasn't as easy urinating as it used to be. I kept thinking that it was stress or that I didn't go to the bathroom often enough which made it more painful than other times. My doctor is no help and she doesn't know what to say. All she told me to do was look for information on the web. I guess that's how I got here. I really need to find a doctor in the L.A. area that is familiar with this problem so I can at least speak to someone else and get a second opinion. Do you know of any support groups or doctor's in L.A., Beverly Hills, Brentwood, or nearby. Thanks for listening. I wish all of you out there with much worse problems lots of love and prayers for a cure. If any one has a similar problem where you are only in pain during intercourse, please let me know and I'll check back here over the next month. Thank you for your help! Jodi
CommentMy problem seems to only occur after sex with my husband. Then I have excruciating pain,lasting for weeks. The last time we had sex was about 10 weeks ago.and I am just in the last day or so- pain free.I have given up taking baths. Only take showers now, I pour warm water over my vaginal area after urinating, usually cannot wear panties.I have come to dread the next time we will have sex. I have seen 2 doctors so far. The first one, was No help. He said he saw lesions and blisters, and assumed I had herpes..which I did not. He never even bothered to call me and talk to me about what the problem might be. I never heard from him again. So I saw another Dr.She seemed to know a little bit about Vulvadynia. Although, I get the impression, I know more than her,just from reading this web board.She wants to do another test,called a Colposcapy.But I have read that the test is NOT conclusive, so have decided against having it.She prescribed Zoloft ,to be used as a pain inhibitor..I had a terrible response to that. I would never take that drug again. So now I am so distraught over what to do now.I feel like there are no answers for me. I cannot find a doctor who seems to care or understand. I am beginning to believe that I am going to be this way from now on. My husband is great about it all. But it is Not fair to him- or anyone!There needs to be a definitive answer to all this. I sit here,depressed,angry,and confused. What did I do to deserve this?? What did any of us do to deserve this?? I have seen others mention prior tail bone injuries- I have that too. Also it was mentioned that perhaps there may be a connection with this and Hemmorroids- I have those too.I will continue to read this board and hope for the best
CommentI think I may have vulvodynia, my gyn. is not familiar with it. I've been tested for an infection,Neg., but I still have irritation. I'm trying to stay on low oxalate diet, taking calcium citrate, ox absorb etc, Dr. Solomon's. Does anyone know any Drs. in the Phila. Pa. or Atlantic City N.J. area?
CommentMessage to Jodi (no e-mail address). If you get an address, e-mail it to me. I have information for you. We can talk. Barb
CommentHi everyone, I am a 27 year old female from Wisconsin. I have been suffering from Vulvodynia for a year and a half. I fooled around with many doctors and regular OB/GYNs before I finally found a specialist in Vulvar Disease. Her name is Jessica Thomason, and she is located out of Columbia Hospital in Milwaukee. I was diagnosed with a skin disorder called Lichen Schlerosis. This disease causes chronic burning and itching in the vulvar area. I also had Vulvar Vestibulitis, which caused intense pain with intercourse. I am wondering if many of you with constant irritated skin don't also have Lichen Schlerosis. I haven't heard another person mention it. But many of you sound like my story. Lichen Schlerosis can only be detected through biopsy. So, don't let someone just inspect your vulvar area and tell you you don't have it (I made that mistake). There are many causes for Vulvodynia Lichen Schlerosis is just one of them). If anyone has further questions, I'd be more than happy to help you. We really need to rely on each other for support. This is so devestating for all of us!!! We all go through the tears and the questions of WHY ME??? Thank you Dr. Glazer for this site. Now I know on my "low" days, that there are others out there who can truely sympathize with me and provide me with answers. Hope I have helped at least one of you out there. Nicole
CommentI have had vulvodynia since l980. I had a terrible time getting a diagnosis. One doctor biopsyed me and afterwards I was unable to have sex. Found a very good doctor who preformed perioneoplasty on me and the condition improved but seemed to move to the upper part of my vulva and presented itself as tissue burning and pain with orgasm. I was then put on elavil which has been a god send. I am symptom free, no pain or burning. My problem is I was diagnosed with BREAST CANCER. There are many tests I need to have and am going to have because my life depends on it. But I am scared. I have to have a colonoscopy and a endometrial biopsy and am afraid even though my vulvodynia is well controlled it could affect it. I recently spoke to a doctor at Johns Hopkins in Baltimore in regards to the colonoscopy and was told she herself did not know. Some things affect some patients and some things don't. So I am in a bad position. She advised me to proceed with my tests and I am. Are there any vulvodynia patients out there who are also breast cancer survivors? If so I would love to hear from you so we can exchange notes. I would love also to hear from anyone who has also had any of the tests I am talking about.
CommentI have had vulvodynia since l980. I had a terrible time getting a diagnosis. One doctor biopsyed me and afterwards I was unable to have sex. Found a very good doctor who preformed perioneoplasty on me and the condition improved but seemed to move to the upper part of my vulva and presented itself as tissue burning and pain with orgasm. I was then put on elavil which has been a god send. I am symptom free, no pain or burning. My problem is I was diagnosed with BREAST CANCER. There are many tests I need to have and am going to have because my life depends on it. But I am scared. I have to have a colonoscopy and a endometrial biopsy and am afraid even though my vulvodynia is well controlled it could affect it. I recently spoke to a doctor at Johns Hopkins in Baltimore in regards to the colonoscopy and was told she herself did not know. Some things affect some patients and some things don't. So I am in a bad position. She advised me to proceed with my tests and I am. Are there any vulvodynia patients out there who are also breast cancer survivors? If so I would love to hear from you so we can exchange notes. I would love also to hear from anyone who has also had any of the tests I am talking about.
CommentI am 20 years old, was diagnosed with vulvodynia a year and a half ago, and I am having surgery on Monday. I would love to talk to someone who has had surgery before then. Please write me, Thanks, ANA
CommentWell I am here to moan and groan again. I cannot get this pain to stop for very long. have totally giev up trying to find a doctor familiar with this problem. I have no health insurance.The one doctor I thought might be of help to me didn't seem to know any more than I do. And I have only learned by reading Dr. Glazer's site.Thank God for Dr. Glazer. The dr. I saw wanted to perform some weird biopsy on me, which was going to cost $450. and I read about it and found that that particular test is almost never conclusive- so whats the point?? She had me try Zoloft(although I had never seen that drug mentioned on this board) Well I tell you-Zoloft does Not work well in my system. It was an awful experience!! After waiting 10 weeks since having sex with hubby- tried again and it was tooo painful! And just from a moment of that- I am now once again in Pain!!! I am about to give up! I am so tired of this and don't know how much more I can take.Have tried everything I have seen mentioned here to try or to avoid. Even tried the Astro glide - but nope! Didn't work. Feel like a freak of nature at this point. I mean I don't know any other married women friends who have this problem. They sit back and talk of their active sex lives with their husbands and I don't understand how or why this happened to me.Not sure what i am going to do..but hope some of you are finding relief from your pain . And perhaps are having good luck finding a doctor with knowledge of this condition.I am at my wits end!!!
CommentMy problems started about 2yrs ago. I had an awful burning sensation after intercouse, on a regular basis. Usually my problem would show up a week before my period. At first I thought it was a urinary infection, got tested and was negative. This went on for alomost two years. Used many different yeast infection meds with no relief. This Sept. I started with this and it hasn't gone away. I experienced burning, itching, dryness, pain in my butt and legs vaginal rashes, I can't sit, stand, have sex, anything! I have been reading what everyone else is writing and think I may have found what my problem is. I was also diagnosed with endometriosis about 4 yrs ago. I have had so many different symptoms I not really sure what I have. I would appreciate it if you, Dr. Glazer, could list all of the many symptoms you have heard of. Thanks, Tired of this problem in PA
CommentMy problems started about 2yrs ago. I had an awful burning sensation after intercouse, on a regular basis. Usually my problem would show up a week before my period. At first I thought it was a urinary infection, got tested and was negative. This went on for alomost two years. Used many different yeast infection meds with no relief. This Sept. I started with this and it hasn't gone away. I experienced burning, itching, dryness, pain in my butt and legs vaginal rashes, I can't sit, stand, have sex, anything! I have been reading what everyone else is writing and think I may have found what my problem is. I was also diagnosed with endometriosis about 4 yrs ago. I have had so many different symptoms I not really sure what I have. I would appreciate it if you, Dr. Glazer, could list all of the many symptoms you have heard of. Thanks, Tired of this problem in PA
CommentTo my fellow vulvodynia sufferers, I am posting this in hopes to help those of you who are dealing with this painful condition. When you are down and feel as if you cannot go on please refer to this message on PEACE: How Would You Visualize A Picture Of Peace? There once was a King who offered a prize to the artist who would paint the best picture of peace. Many artists tried. The King looked at all the pictures, but there were only two he really liked and he had to choose between them. One picture was of a calm lake. The lake was a perfect mirror for peaceful towering mountains were all around it. Overhead was a blue sky with fluffy white clouds. All who saw this picture thought that it was a perfect picture of peace. The other picture had mountains too. But these were rugged and bare. Above was an angry sky from which rain fell and in which lightning played. Down the side of the mountain tumbled a foaming waterfall. This did not look peaceful at all. But when the King looked, he saw behind the waterfall a tiny bush growing in a crack in the rock. In the bush a mother bird had built her nest. There, in the midst of the rush of angry water sat the mother bird on her nest... perfect peace. Which picture do you think won the prize? The King chose the second picture. Do you know why? "Because", explained the King, "peace does not mean to be in a place where there is no noise, trouble, pain or hard work. Peace means to be in the midst of all those things and to still be calm in your heart." As we deal with the pain and tears of Vulvodynia let us all try to be like the mother bird and be peaceful in our hearts no matter how much physical turmoil we may be in. Keep the Faith, we will be VICTORIOUS over Vulvodynia one day. God Bless
CommentI AM A 35 YEAR OLD ALSO SUFFERING FROM THIS UNKNOWN VULVA DISORDER. I SAW MY GYN-OB FOR A ROUTINE PAP SMEAR. I MENTIONED TO HIM AT THAT TIME I HAD SOME EXTERIOR ITCHING. HE PRESCRIBED ANTI-FUNGAL. DAYS WENT ON AND MY ITCHING SYMPTOMS WERE NOW BURNING SYMPTOMS. I WENT BACK TO HIM . HE MENTIONED I HAD A BAD REACTION TO THE MEDICATION. HE THEN PRESCRIBED ANOTHER TYPE OF ANTI-FUNGAL. THE SYMPTOMS AT THIS POINT WERE UNTOLERABLE. WENT BACK TO SEE HIM AGAIN. HE NOW PRESCRIBED HYDROCORTISONE FOR THE SEVERE BURNING. THAT ONLY MADE THINGS WORSE! AFTER THREE MONTHS OF CONSTANT BURNING HE WAS PUZZLED. HE RECOMMENDED THAT I HAVE A BIOPSY DONE. THIS WAS DONE WITHIN A FEW WEEKS. THE TESTING CAME BACK WITH CHRONIC INFLAMMATION. HE SAID HE DIDN'T KNOW WHAT TO DO FOR ME. AT THIS POINT IN TIME I WENT TO THE INTERNET TO GET SOME INFORMATION--THAT IS WHEN I FOUND THIS WEB SITE. I ASKED HIM IF I WAS SUFFERING FROM VULVADYNIA. HIS RESPONSE WAS NO. I ALSO WANT TO MENTION THAT I ALSO SUFFER FROM FMS. IN ALL THE YEARS THAT I HAVE BEEN SEEING A GYN-OB I NEVER HAD A YEAST INFECTION NOR HAD ANY TYPE OF VULVA BURNING OR ITCHING. I TRULY BELIEVE MY VULVA SYMPTOMS WERE FROM OVERUSE OF ANTI-FUNGAL CREAMS. I THEN WENT TO SEE ANOTHER DOCTOR WHO WAS A LITTLE MORE FAMILIAR WITH VULVA PAIN. I HAVE BEEN ON TESTOSTERONE CREAM ONCE A DAY, LOW OXALATE DIET, AND CALCIUM CITRATE. I ALSO WENT TO SEE A HERBALIST WHO HAS PUT ME ON KAVAKAVA , A NATURAL ANTI-DEPRESSANT. SHE HAS ALSO MADE UP A FORMULA CREME THAT CONSISTS OF ST. JOHN'S WORT, CALENDULA CREME & CORN STARCH. I AM HOPING THAT I WILL BE ON MY WAY TO RECOVERY! MY SYMPTOMS HAVE DECREASED AT LEAST 50%. IF ANYONE OUT THERE NEEDS INFORMATION, PLEASE FEEL FREE TO E-MAIL ME. GOOD LUCK TO ALL! LOIS
CommentI have been suffering from vestibulitis for 1 and 1/2 year. At first I thought it was a yeast infection, like everyone else here. I used monistat and it only made the itch worse. I went to my GP, who did cultures and found nothing either. He gave me flagyl, which made things worse. I also tried diflucan, got worse. Finally went to a GYN who knows about vulvodynia and things improved. He prescribed Lidex, to use twice daily for 2 months. Things got pretty good with that but I still had burning about a week prior to my period, and during the first couple of days. As the weeks went along, my symptoms improved, I had almost no symptoms. However, I had my yearly pap smear 2 months ago, and there was infection on my cervix. I was treated with flagystatin, and it got everything started again real bad. The burning is very painful with intercourse, which I did not have before. I went back to my GYN, and he has me using Lidex again for 2 months. I find that things are improving once again, but I dont wear underwear and only loose sweat pants when I'm at home. If things are not better in 2 months, he will do injections in the vestibular glands. I was wondering if any of you had success with the injections and if it was painful and for how long? Keep smiling, I know its hard but things will improve slowly over time. Frustrated.
Comment
Comment
CommentHello, I am new to this sight and have been reading the many letters from the other suffers out there and I'm amazed at how many there are of us out there. I have had vulvadynia for about a year and it has been the longest year of my life! I'm 31 and feel as though my life has been taken away from me. My pain started after using vagastate one for what I thought was a yeast infection. It burned soo bad I called my OB at 3:00 in the morning. He told me to douch and use cortizone cream. Both made matters worse. Since then I have been on different anti-yeast medications and anti-biotics which only make matters worse. The pain is also rectal and makes sitting very painful. I have been on Dr. Solomons pain program but have had a hard time with the citate because of constipation. I am currently using the NAG. But have not had any results yet. My OB recently prescribed an estrogen cream (premarin) but the burning was untolorable after the first three hours I use it I have not tried it since. I have heard Estrace is less irritating but have not had the nerve to try that since the experience with the premain. I have no sex life and can hardly stand wearing underwear or pants. Has anyone had any of the same symptoms with the estrogen cream? Recently I have found blood on the tissue after I wipe. Does anyone know of and Dr. in the Cleveland, OH area? I hope someday soon they find a cure for this!! My heart reaches out for the many women who suffer from vulvar pain. We can all draw strength from each other and hopefully help each other deal with the pain.
CommentThis is in response to Sylvie - I have had the shots of interferon in my bartholin glands and it did not help me. The case may be different for you because vulvodynia affects each woman differently. If you do get the shots, make sure that they use the correct size needle because the first few shots I had were given to me with a needle that was too large and those shots hurt terribly! I almost jumped off the table when they gave them to me! I have found the most help by taking Amitriptyline, soaking in Aveeno oatmeal baths, and applying ice to the areas that are most affected by the burning irritation. And of course, Prayer does help too! Good Luck to you, I hope the shots will help you. Shari
CommentHello fellow vulvodynia sufferers, My husband and I have finnaly been able to have intercourse without the intense pain, burning, irritation, rawness, etc... (well it is not as intense) a few times in the past month. We are trying to get pregnant. Since it is so hard to have intercourse due to vulvodynia I am asking for advice from anyone who was successful in getting pregant even though you have vulvodynia. Did you use the "basil temperature method" or another type of method which helped to determine when you were ovulating? I have a 35 day cycle and need some advice. Please E-mail me with any suggestions or information. Thanks! God Bless
CommentI hope someone can answer this, is lichen simplex chronicus considered vulvadynia? Is there help for this problem, I have seen a dermatologist and the ointment is not helping. Someone please answer. Thank you in advance.
CommentI have been on Doxepin (an anti-depressant) for two years with minimal improvement. I had one two-month period where the vulvodynia actually went away, but then came back with a vengence. In the past year I've had 5 bladder infections (hadn't had one of those for 20 years) and a few yeast infections. I also tried boric acid suppositories that made the burning worse. I guess I'm fairly lucky, I can have intercourse but pay for it for 2-3 days after. I really think there is a hormonal connection here. Around the time of ovulation the burning gets worse and there's red inflammed skin around the opening to the vagina. I have an appointment in February with a doctor at Mass. General Hospital, recommended to me by Dr. Glazer. I had been feeling quite depressed when a GYN told me there was nothing she could do to help me. (A dermatologist was the one who put me on the Doxepin- she says it's stress related). I'll post again after my February appointment. In the meantime anyone wishing to talk, please feel free to e-mail me at the above address. Take care.
CommentHello folks, I've been suffering for 10 long years. I've tried so many different things. Only success was withCROMOLYN cream. It is topical and helps a little while using. A little relief is worth it, but I am (as are you) SUFFERING.
CommentMy dearest friend has been suffering with this disease for approximately 8 years. I have watched her become debilitated by pain and her life nearly consumed by the effects of the disease. I pray that the day will come soon that she will be free to live again.
Comment(our e-mail address is in my husbands name) Hello, this is the first time I have written. I have been reading all the letters posted on your site. I am amazed at the number of wemen that are suffering in so many ways. My problems all started almost 6 years ago. The first gyn. I saw misdiagnosed me and did unnecessary surgery which I may never get past emotionally. I was such a basket case at the time and I put my trust in someone who I thought would know what to do to fix things. I will never be so trusting again. It took me almost 4 years (and being told it was all in my head) before I insisted on seeing another gyn. who was finally able to help me a little. I thought I was going to go out of my mind trying to live with all the sensations my body was putting me through. I had almost constant tingling, stinging, some itching, sharp pains, feelings like pin pricks running throught the labia minora and the outer folds. It felt like there were marbles in the opening of my vagina, the skin around the vaginal opening would get red and sore, almost a raw and burnt feeling at times and sometime the skin would crack like a little paper cuts and they would be so sore and I would feel swollen. At times it would feel like "air bubbles" were moving through the skin. I really thought I was going crazy, I had never heard of such a thing. When I had intercourse everything would be worse for 2 or 3 days or more. I became so depressed at times and was having anxiety attacks everyday when I awoke (if I was lucky enough to get some sleep) that it became almost impossible to face each day.I still don't know where I found the strength to keep going and I don't know if I have the strength to see this to a "cure". I feel like a different person since this all started. I would give anything to be the old me. I haven't had a normal day in 6 years and I know I don't want to grow old feeling like this. I have had some pretty scary thoughts but some days I am just so worn out physically and emotionally that I just want it to all stop. It's hard to appear normal to everyone around me (it is too personal and embarassing to tell to many people). I even have a hard time talking to my husband (I just break down) I have cried many a tear alone. I do have one friend who knows what I have been going through but I don't like to burden her with my problems so most of the time I keep it all inside, and it is not easy. I have recently joined the VP foundations in hopes something in their literature will be of some help to me. The doctor I started seeing in 97 has helped some. At least he acts as if I have a real problem and doesn't make me feel like it is all in my head. He said he didn't think I had vulvodynia. He did a biopsy which showed a thickening of the skin cells (it is hard to imagine that this would cause so many sensations). I tried a steroid cream which did help to reduce the sensations (my air bubbles went away). They weren't so constant or intense. I also tried an antidepressant which didn't seem to help much except I slept great but I was tired till about noon each day. I am now trying Estrace cream which is helping a little. I have only been using it for a few weeks so I have to give it some time. I read it is supposed to strengthen te skin and make it less prone to inflamation. I hope it works. This all started so suddenly. One day I felt great. I had just lost some weight and all was well. I had intercourse with my husband and the next morning I woke and everything in my genital area felt like it had changed. All the sensations I mentioned above were happening. Has anyone else had there probems start this quickly? Everything looked normal but it sure didn't feel normal. It has all been very frustrating because the doctors really don't know how to fix it. I know I have been going on and on but it is great to get it off my chest. Thanks for the chance. I have a question for Dr. Glazer if you read this. Could you tell me about the prudendal nerve. I read something about it that said a problem with the nerve can cause tingling, itching and burning all ao which I have had. What could cause the nerve damage? How can you tell if there is a problem with the nerve? Can it be fixed? Well that is it for now. Thanks again for the web site and a chance to vent and letting me know I'm not alone in all this.
CommentHi everyone! I am happy to report that my surgery went well on the 28th, and my doctor (Stanley Marinoff) seemed pleased. I am just taking it easy now, I will be in bed until next week when I go back down to college. I was wondering if there are people in the Miami/Ft.Lauderdale area who would like to form a support group. I go the U of Miami, and I know that it would be great to be able to talk to people when I go back down. I want to say thank you to everyone who wrote to me before and gave me wonderful advice and support!! I am 20 years old and I have been suffering for about a year and a half. My pain is strictly with intercourse, and then I feel this horrible buring pain, like I am being ripped open. But I think you all know what I am talking about. My pain then would last about 2 weeks. It was a horrible cycle, and I sort of felt like - I am young, I have my whole life ahead of me, and I don't want to be like this forever. I tried the Amitriptaline, a numming topical cream that I can't remember the name of, and then the Interferon shots. Unfortunatly none of them worked for me. So I went ahead and had the surgery. Hopefully this will be the cure I have been looking for, but right now all I can do it sit back and try and heal. I think this sight is wonderful, everyone is really helpful. Well, thats it - I wish everyone the best!!!
CommentI have vulvodynia, pudendal neuralgia, interstitial cystitis and endometrisos. I have had 2 Csections, a laproscopic tubal ligation during which my endo was diagnosed and adhesions were taken care of, a hysterectomy, and a cystoscopy to diagnose my bladder. My best relief has come with antidepressants to deal with my vulvar burning, itching, and rawness. I am currently using Elavil(starting 6 weeks ago) and am gradually increasing my dose up to 125 mg per day and have been takin Elmiron since my IC was diagnosed in July 1998. I also soak in the tub twice a day for at least twenty minutes, blow dry myself to avoid the discomfort that even patting myself with a towel can cause, and am using vaseline as a barrier to allow my skin to heal and protect against further irritation. I don't eat chocolate, nuts, coffee, tea, soda, anything with caffiene in it, artificial sweeteners, most spices, onions, citrus, dairy, and fruits and vegatables that are high in oxylates. Even with all of this, I am not symptom free with respect to either the vulvodynia or the IC. I'm hoping that I will continue to improve on the Elavil. I can not engage in sexual intercourse with my husband and get very uncomfortable when I sit for more than 30 to 45 minutes or so. My symptoms also increase over the course of the day and are most noticable in the early evening. I can tell you what has not resulted in improvement: long term treatment for chronic yeast infection with mycolog II, terazol, and diflucan, treatment of bacterial vaginosis with cleocin, treatment of the tightness and irritation with estrace cream and then a topical cortisone cream. The antidepressants seem to offer the best relief ( I was on Paxil last spring and was feeling better but was reluctant to stay on it long term and am now on the Elavil). Let's hope I continue to improve as I do not want to have yet another surgery.
Commenti am 29 and have had this on and off for about 5 years. Can anyone tell me of any success stories? Also, I would like to know how much calcium citrate i should take. Does anyone know of any good doctors or support groups in the SF area? I feel like killing myself.
CommentHi again my dear friends, I have a new E-mail address. It is StayNprayr@aol.com I hope everyone had a happy new year. We can hope that this new year will be a year of improvment for all Vulvodynia sufferers and a year in which more research will lead us to a cure. We must keep the faith and not give up. Above all we must stay in prayer, for prayer changes things! Please feel free to E-mail me whenever you want to. It's always nice to hear "You got mail" and to open it up to see a message from someone just like me! God Bless you all! Shari
CommentI am a married 22 year old, who has suffered from vulval pain for 3.5 years. My husband and I only had 6 months of unpainful sex before I was forced to see a doctor. I am getting pretty tired of seeing all these doctors, without improvement. Am I going to be like this for the rest of my life? If so, I am going to start researching about vaginal transplants!!!! I would like a new one - as would my husband:) p.s. dispite all of this, I am still very optimistic. I hope that all the other women here can stay that way too. (Read the peace story presented by another woman)
CommentI was curious to know if there are any Australians out there with these problems? I'm from Brisbane, and it would be comforting to write to people in the same country as I am. I am finding it very comforting to write to others in a similar situation: "22 years old, married for 4 months, frustrated, upset, angry, annoyed, sad, generally pretty emotional about the topic" I only experience pain during intercourse and if I wear tight jeans (for which I am grateful). My pain over the past 3.5 years has been up and down, but mostly down. I have had a Fentons procedure which had some success, but I think I still have a long way to go (the bottom of the vestibule is cut and repaired in horizontal stiches). I have tried pelvic floor exercises, EFUDIX cream, numbing cream, antidepressents and more that I can't remember. I feel at a loss at the moment. Any suggestions for treatments I could discuss with my doctor at next week's appointment would be greatly appreciated. Thank you to all who have written. Your support is invaluable.
CommentThis is my first post and I feel so relieved just having found the website and some information. I have been through the yeast infection test/treatment/no relief syndrome, Premarin topically and internally/no relief syndrome, Astroglide (ouch!), etc., and thought perhaps I was the only woman on the planet who had suddenly and mysteriously “grown together”, or so it feels. Intercourse is absolutely impossible for me at this point, and I’m wondering if anyone has experience with using a topical numbing agent in order to have intercourse. I’m seeing my OBGYN on Thursday, and would like to have some kind of plan. I’m in the San Diego area, so if others out there have recommendations or suggestions, I’d like very much to hear from you.
CommentTo the person who wrote to me (caroline.smith@nationsbank.com), I would love to share my surgical experience with you but for some reason my local server will not let me send you any e-mail at your e-mail address. Any other way we can communicate????
CommentHi, I am 24 years old, and have been suffering some of the symptoms that have been listed by those who posted: they include-- vulvar pain (especially and mostly on right side), swelling, (no redness), pain when touching pubic hair even lightly, whitish discharge, and lots of pain when sitting, driving, or wearing jeans. I have tried ice packs, heat, and vitamin E. I am undiagnosed, but I feel these symptoms correlate to the ones I have seen described. Oh yeah, and I also have pain that is terrible (on the right side, again) when I have an orgasm. I am in desperate need of support, and would very much appreciate any responses or e-mails in regard to this puzzling problem. Does anyone know what my problem could be?? Please e-mail me at: Tiffsdoubl@aol.com Thank you very much, and good luck! ~Shannon
CommentI have suffered for 5 1/2 years with vulvar vestibulitis. After countless specialists, painful treatments, creams, medications, etc., I was finally referred to a surgeon of gynecologic oncology. I am going in tomorrow, January 13, for a total vestibulectomy, with vaginal flaps and reconstructive surgery(this is not laser!). The success with the this surgeon and the procedure are very high. I will keep a diary of this beginning tomorrow. The recovery period quite length, but it will all be worth it, to be pain free and normal again. Has anyone had this operation? Or, if you would like to know the outcome, please e-mail me at click64@hotmail.com. My prayers are with every woman who suffers from this awful condition. S
CommentHi, is the first time I get into this site and I discovered that exist sites about vulvodynia only a couple of days ago. I live in Italy and I did not find any sites that told about doctors in Italy so i was wondering if anybody of you heard of one or even if there is any italian woman who have the same problems. I have the so-called vulvar vestibulitys syndrome (hope the spelling is right and sorry if my english is not perfect) from the 1996. It seems that my VVS was caused by a candidiasis that affected me for a year, even if is weird no one doctor or gyn could help me to solve the candidiasys until 2 years ago when I went to a dermatologyst instead of a gyn and he helped me. He solved the yeast infection but he could not solve the VVS, I still go to him because was the only one who, at least knew about the VVS, and I tried a cortisone cream (no results) and two antidepressants (results in the first weeks and then pain again). I used a wonderful A-vitamin-gel-cream that refreshed the affected area and took away any pain I could have after intercourse but the company which produced it stopped the production (nice, eh?). The only symptoms I have are the ones listed by Jody :painful sex and pain after I try to have sex and some burning while urinating.If I avoid (!) sex I can live as a woman with no such problems and reading the others messages I consider myself lucky because I can walk and sit and wear jeans! I've red about the low oxalate diet: did anyone had improvement with this? Any other tips? I really wish you future days of pain freedom, peace Chiara
CommentSIX YEARS AGO I HAD LASER SURGERY TWICE TO GET RID OF MY VULVODYNIA, WHICH WAS EXTREMELY PAINFUL. I LEARNED TO JUST DEAL WITH IT,USING ALOE VERA GEL AND EVENING PRIMROSE TO LESSEN IT. SOMETIMES ITS NOT AS BAD AS OTHER TIMES, BUT I STILL HAVE THE BURNING. I USED TO HAVE MULTIPLE ORGASMS, BUT EVER SINCE I CAME DOWN WITH THIS, I ONLY HAVE ONE, WHICH I'M THANKFUL FOR. BUT, I JUST DON'T UNDERSTAND WHY OUT OF THE BLUE I COME DOWN WITH THIS. IS THERE ANY WHERE IN OKLAHOMA CITY TO GO FOR YOUR TREATMENT. THANK YOU
CommentDear Friend, I've searched for all of you for the last 10 YEARS!! My problem started at 32 years old. I had what I and my doctor thought was a yeast infection. I used femstat for two weeks. No relief. I had serious burning pain, red, swollen and a feeling of pressure in my lower abdomen. Urinating was excrutiating and sex was out of the question. He prescribed femstat cream for me for the following TWO years. Everyday. The pain was tolerable while I used the cream. I proceeded to see 14 doctors in the last 10 years and all have said although quite red there seems to be no problem. I was told to just not think about it and it might go away. I have cried, I had shut myself off from all friends and family for a while and even had a few drunken spells . I knew that this was not in my head and obviously time was not the answer. There was one doctor who at least believed me and said he had heard my exact symptoms from many women but was honest enough to say he did not know what to do about it. He did give me strange advice that alleviates some of the pain TEMPORARILY. It's called Instant Ocean and you can get it in a pet shop or fish shop. It's actually for fish tanks. It's a high salt solution that has alot of characteristics of the dead sea. He said to put a cup in a small amount of warm water in the tub and sit in it for half an hour. I was needless to say very apprehensive. But it gives me relief during the day. I can at least travel now and function at work. But as day wears on the pain does return. Seems worse before my period. Last year considered a marriage proposal from a wonderful man. I spoke to all my doctors and asked about my problem. They said get married I'm sure all will be well once you're settled. I knew in my heart the severity of my problem but for once in my life used my heart instead of my head. My husband knew the problem before marriage and I was extremely clear about the severity and the years in which I have had this problem. So we married. But in almost two years time we've had sex six times and I'm not happy. I'm extemely attracted to him , love him and cannot continue this way. I also desperately want a child and evey doctor says there is no problem. Well if you can't have sex you can't make a baby. I will be 42 years old and afraid that my chances might have passed me by. I live in Queens, New York and will gladly talk to someone else. If anyone knows , please send me names of who is working with this problem either in Long Island or in New York. I owe it to my husband and to myself. I will be eternally grateful for any help some one may offer me. Your comrade-in-arms, MiMi
CommentDear Friend, I've searched for all of you for the last 10 YEARS!! My problem started at 32 years old. I had what I and my doctor thought was a yeast infection. I used femstat for two weeks. No relief. I had serious burning pain, red, swollen and a feeling of pressure in my lower abdomen. Urinating was excrutiating and sex was out of the question. He prescribed femstat cream for me for the following TWO years. Everyday. The pain was tolerable while I used the cream. I proceeded to see 14 doctors in the last 10 years and all have said although quite red there seems to be no problem. I was told to just not think about it and it might go away. I have cried, I had shut myself off from all friends and family for a while and even had a few drunken spells . I knew that this was not in my head and obviously time was not the answer. There was one doctor who at least believed me and said he had heard my exact symptoms from many women but was honest enough to say he did not know what to do about it. He did give me strange advice that alleviates some of the pain TEMPORARILY. It's called Instant Ocean and you can get it in a pet shop or fish shop. It's actually for fish tanks. It's a high salt solution that has alot of characteristics of the dead sea. He said to put a cup in a small amount of warm water in the tub and sit in it for half an hour. I was needless to say very apprehensive. But it gives me relief during the day. I can at least travel now and function at work. But as day wears on the pain does return. Seems worse before my period. Last year considered a marriage proposal from a wonderful man. I spoke to all my doctors and asked about my problem. They said get married I'm sure all will be well once you're settled. I knew in my heart the severity of my problem but for once in my life used my heart instead of my head. My husband knew the problem before marriage and I was extremely clear about the severity and the years in which I have had this problem. So we married. But in almost two years time we've had sex six times and I'm not happy. I'm extemely attracted to him , love him and cannot continue this way. I also desperately want a child and evey doctor says there is no problem. Well if you can't have sex you can't make a baby. I will be 42 years old and afraid that my chances might have passed me by. I live in Queens, New York and will gladly talk to someone else. If anyone knows , please send me names of who is working with this problem either in Long Island or in New York. I owe it to my husband and to myself. I will be eternally grateful for any help some one may offer me. Your comrade-in-arms, MiMi
CommentI found this site as I was trying to help my good friend who has been diagnosed with vulvadynia. She is suffering terribly. DOES ANYONE KNOW OF A DOCTOR IN THE KANSAS CITY AREA WHO IS KNOWLEDGEABLE ABOUT THIS CONDITION???? If anyone can help please e-mail me so I can pass this information on to her. Thanks!!
CommentIs there anyone who suffers from vestibulitis due to an injury to the pudendal nerve? I believe that is what I have pudendal neuralgia. Has anyone received treatment for this? Has anyone tried neurotonin for this?
CommentJust wanted to post a message when I am feeling good,for a change. Usually I post when NOT feelin go well. So though I would let everyone know there can be days when you are pain-free. I have been feeling quite a bit better for about 2 weeks now.No thanks to the help of any doctors. As I have given up hoping to find one to help me. I decided to try thr Prayer method of treatment, as well as a sort of trial and error way of determining what does or does not help me.So I will give a lot of the credit for my feeling better to God.When I was totally at my wits end I turned the problem over to God and asked for help.I have found too, that drinking lots of water and limiting my intake of soft drinks seems to help. NO baths now- only showers,and only Ivory soap.I try to only use Northern Free toilet tissue,but I find it hard to locate in grocery stores. So when i cannot fin it- I DO make sure to buy at least a name brand,fragrance free type.I wash my clothes(all of them now) in Ivory of Dreft Baby detergent and still rinse twice.Have not yet tried to wear any denim again at this time. Am slowly adding pants back into my wearables.During the worst times I had with the burning and pain- I restricted what I wore at all times to long dresses or skirts with NO underwear AT all. As I stated, it is all trial and error for each individual. Am happy to report that Hubby and I were actually able to have pain-free intercourse(after a 3 month wait).So far, no signs of the burning pain I had been experiencing either during or immediately afterwards. Keepimg my fingers crossed though.Feel as though we will never get back to a truly normal routine of that aspect of our lives. Had to wait a good long while before trying it again. we made sure I had been pain free for at least 2 weeks before attempting it.we did Not use the Astro-glide this time since the last attempt with using it seemed to cause an immediate sensation of burning.May not do that to others though.Well, that's all. I had whined on here so much in the past that i thought for once I would offer some encouragement to others.I know I will have bad days as well as good ones. I don't feel that I am cured by any means. I am hoping that I am at least,for now, getting things under control.Will report back again as to how things are going.Still hope to one day find a doctor like Dr. Glazer, in my area,but refuse to go to anyone else that is so unfamiliar with this problem that I have to S P E L L Vulvadynia for them!!!Wishing everyone suffering from this awful disorder the very best of luck . Guess all we sufferers can hope for are a few painless days.I really appreciate those days now!!
CommentI had itching and burning in the vulva area for three months and I thought I was going crazy because I couldn't figure out what was causing it. I narrowed my problem down to the calcium supplement I was taking, it had too much oxalate in it. I stopped taking it and the itching and burning(urine) went away in three weeks. I wonder if other women with this problem tried changing their calcium supplement their problem would go away as mine did.
CommentI am 30 yrs. old. Have been suffering from vulvodynia since August. Elavil worked for me, but the inflammation didn't go away. I have been unable to have sex with my husband since late July. My doctor did "vascular laser of the vulva" on 12/28. He treats others with this condition and has had much success. I would like to hear from anyone who had this same procedure done and it was SUCCESSFUL. Dr. says it may take months before we know if mine was a success. He said I was a good candidate because my inflammation was so widespread. PLEASE DO NOT WRITE if yours is a bad story. I need reassurance and hope -- especially since my recovery has been so difficult. Praying for us all-- Jennifer
Commenti've just found the site - it's comforting (?) to know there are so many other people experiencing what i am! i feel somewhat freakish and less than a whole person; i've been married for a year and am unable to have sex with my husband. he is patient and understanding but is getting very frustrated! we have not experienced pain free sex for almost two years; i had less than 6 months of pain free sex before this developed... they thought i had thrush and put me on course after course of treatments. i changed my diet but nothing worked. thrush never showed up in my swabs. i have had three biopses and the doctor wants me to have another. i have not been back since he said that. i have had problems also with lichen simplex chronicus and with lesions on my labia. i think it maybe due to latex or lubricant; i'm not quite sure. i have been taking Polaramine (anti-histamine) which has helped a great deal with the itching and has made the lesions disappear. however, the pain continues. I'm using advantin, a steroid, which i hope will help. some days are better than others but i am losing hope. i never feel sexually aroused and my husband thinks it's his fault!! if there are any other young women in this situation in Australia, please contact me. i will try a few of the things i've read here today but if anyone anywhere has helpful advice i'd love to hear it.
CommentI was diagnosed with vulva dynia about 2 months ago. I complained to my doctor several times about my symptoms. She kept telling me to use a lubricant or to have more foreplay, and I kept telling her that that wasn't the problem. Finally after about 5 visits she sent me to a gyn. He diagnosed me in about 5 minutes. From the reading I've been doing, I think I got pretty lucky. I only started experiencing pain during sex, I knew something was wrong because I used to be able to have sex several times a day if I wanted to. Suddenly, I had this intense pain during sex, and it would last for several hours after intercourse. I am only 21 years old and don't want to live with this condition for the rest of my life. My gyn put me on a cream called viaderm, which is part hydorcortisone and part antoboitics. This cream seemed to work at first, but not any more. I am going to see my gyn tommorow. I have a lot of questions.
CommentThis is to Jody(no e-mail). I have experienced the similiar pain during intercourse. I also started getting chronic bladder infections. Please e-mail me. I would love to talk. Anyone else who has experienced the same pain. I would love to talk
CommentLike all of you I have been through all of it. Doctors who have no clue, misdiagnosis etc. I have had this problem for almost 2 years. I have been taking Elavil since August and went to PT for 2 months (all my insurance would cover). I'm not sure if I will ever be totally NORMAL, but I am definitely doing much better. My specialist Dr Elizabeth Stewart is located in MASSACHUSETTS. Her number is 617 541-6646. If you live in the area CALL HER, she knows what she is doing and can refer you to some execellent physical therapists. Don't let another quack treat you like a guinea pig. GOOD LUCK!
CommentHello everyone. Saw Gayle's note above and realized I hadn't posted in awhile myself. Still no sex but the 24/7 pain has subsided. I have horrible flare-ups during my menstrual cycle and even volunteered for a study being done at Johns Hopkins regarding vulvodynia pain and your menstrual cycle, but I haven't heard what the results ending up being. I have had sex 3 times in the last 2 years and must admit I have one of the most understanding husbands. However, I feel like if it wasn't for this website that we would have been divorced a long time ago. He knows he's not the only one "doing without" and understands my pain also. Just wanted to let you all know that most of my "good days" have been due to the fact that for one solid year I did absolutely nothing. No exams, no drugs, no creams, no special soaps, etc., no sex -- nothing. It was at the end of this year that my husband and I attempted to have sex. It didn't hurt during, however, the pain afterwards lasted for weeks. Something else that I found helps is a good psychologist. I was nearly suicidal last year (had just been diagnosed with fibromyalgia along with the vulvodynia and interstitial cystitis) and my primary care physician referred me a doctor in her office. He has experience in sexual problems/painful intercourse, etc. However, he had never heard of vulvodynia before I came along. It's been a great experience on both of our parts and I really feel like he has saved my life. I have met with him on numerous occasions, but my husband and I together have never had the chance to see him. That is my goal -- I think it would really help him also. I would just like to end this by suggesting besides the only meaningful treatment other than prayer is to stop all of their so-called "treatments" for awhile. I think you'll be surprised at the results. I found that the creams/ointments etc. just made the pain worse and being drugged all day from the tri-cyclics was no way to live. Besides which it didn't even help the pain. I'm on anti-inflammatories for the fibromyalgia and I haven't noticed a difference in the vulvodynia pain. Even the Astro-Glide burns! Every time I had an exam I would hurt for weeks. I've been dealing with this for years and my best days have been the ones where I wasn't doing anything for the pain. Keep the faith sisters! I know one day a female gynecologist will be diagnosed with this "syndrome" and then we'll get our cure! Until then we're stuck with all these male doctors who could care less.
CommentI am feeling better than I have in two years and just wanted to share what is working for me. I have had VVS for 4 years and have tried everything, including a vestibulectomy. Currently I am taking Nuerontin and Elavil and doing stretching exercises, probably similiar to bio-feedback. I still have bad days, but overall am 80% better. My Dr. said that in 3 months, he will start cutting back on the medicine. If anyone wants more specifics on the treatment, just write. Also, I am in AL so if someone wants the name and number of my Dr. let me know.
CommentMarcia, I agree with your last statement regarding the male doctors. If men were experiencing the same problems that come with this "syndrome" there probably would have BEEN a CURE by now! Until the cure is found we just have to Stay in Prayer!!!!!
CommentAfter reviewing the previous guestbooks I haven't seen anyone cured from this mysterious illness. Has anyone been cured regardless of what state or country you may be from. I've been suffering for over 7months now. My vulvadynia was caused by overuse of anti-fungals. I thought by now that I would be feeling alot better. They diagnosed it as contact dermatitis. But it has been 7 months, with very slow improvement. Please e-mail me or post it on the site if ANYONE has had a complete recovery. I will travel ANYWHERE!!!! Keep up the prayers & faith maybe someday there will be a simple cure. L.C
Commentby far the most comprehensive info I've found on the issue. Many thanks. MA
CommentFirst of all I would like to congratulate Dr Glazer on providing such a great site, where we can all express our frustration and tell each other our own story. Finding this site has truly saved me from ending up in the ‘nut house’. Thank you, thank you, thank you. I have a detailed list of treatments I have tried in the last 5 years if it is of any help to your research. I’m a 23 years old Australian and have been suffering from this extremely painful ‘problem’ for the last 5 years. I experience severe burning and sometimes a bruised feeling on the outside and about 1” inside in the areas of 4 o’clock and 8 o’clock (Bartholin Glands) of my vulvar. Sex is nearly impossible as it is so painful and the muscles seem to be so tight around my Bartholin Glands that it is hard for my husband to enter me. We tend to stick to foreplay most of the time, but it’s not the same, we both miss that closeness you feel when two people become ‘one’. It’s a natural thing when you love someone so much, you want to be as close as physically and emotionally possible. It really hurts to know that we can’t experience that feeling……yet. My problem started more or less overnight. It became really painful to urinate which also made my vulvar burn. I bet you can all guess what the doctors said – thrush! I have had so many treatments for a yeast infection and not one of them has given me any relief. This is one of many different treatments I have tried; one gyno/proffessor thought I maybe allergic to my own hormones. He did a test by injecting small amounts of hormones just under the skin on my under arm. A few flared up and he suggested having a needle – Depro Provera which would stop these hormones from producing. I had the needle in May 98 which lasted 3 months and didn’t notice any changes. In summary I have been to numerous Gyno’s, Urologist, Naturopaths, Homoeopaths, Chiropractor, Skin Specialist, Acupuncture, Chinese Herbs, and numerous diets. Until 6 months ago, I didn’t have a name for my problem. For 4 ½ years I thought I was a freak of nature – knowing that there are other women out there experiencing my pain and helplessness makes me feel stronger. I was beginning to think I would have to travel to America to find a doctor who has experience with Vulvodynia until finally I found a Doctor in Australia through searching on the Internet. He works with Dr Glazer doing the Biofeedback, but asked me to be professionally diagnosed by a Dr Richard Reid before I started the program. Dr Reid diagnosed me with having Severe Vulvodynia. He has told me to try the biofeedback, but he thinks because I have Severe Vulvodynia that I will have to have my Bartholin Glands removed. After reading and talking to a woman who has had this surgery, my husband and I have decided against it. I have been doing the biofeedback exercises for nearly 5 weeks. To date there has been no change, but they say it usually takes about 8 weeks before any changes occur. I will keep my fingers, toes, legs and arms crossed!! Well this has ended up been quite long. Although if I wrote down the details of every treatment I have tried it would end up been a book! If there is a woman in Australia who has found a cure or some type of treatment which gives a little relief please email me as a lot of the treatments that are suggested in the guestbook aren’t available in Australia. If anyone would like to contact me, please do I would love to hear from you. Lets all hope that 1999 is going to be the year we can all start living normal lives again.
CommentTo: anyone HELP! I've been suffering for 9 years with this unknown chronic disease. Tried all the antihistamine & antidepressant drugs. They help for a short term. The only free time is at night, I find I must lay down to get relief. Very depressed. It has touched every part of my life ie: my chldren, husband, work sleeping, etc. I'm in Texas. Does anyone have name of a specialist in or around Austin? Look forward to your response.
CommentI am talking on physiotherapy treatment for vulval pain. If anyone can tell me about your experiences with healthcare professionals - that would be very useful. The group I am talking to is multidisciplinary so I hope to have an effect. I am speaking in England, and would really appreciate anyones experiences in the UK
Comment
CommentI am from England, and I have been suffering from vestibulities for almost two years, I would be grateful if I could hear some success stories as I am only 20 and would love to have sex with my boyfriend again in my lifetime. I would love to hear from anyone who can give me some encouragement as at the moment I feel like I have tried everything, from creams and tablets and nothing gives me any relief. Feel free to write.
CommentI had some success with Premarin cream in reducing my symptoms. However, I think I could get even better. I have severe pain during intercourse, and though my husband is very patient, I wish I could enjoy intercourse without all the pain. I would be very interested in a referral to a doctor in the Twin Cities area who specializes in the treatment of vulvar vestibulitis.
CommentDr. Glazer, Great Web Site! I started with this late summer of 1997. Finally got to a Dr. that specialized in vulvar pain. He suggested PT , but my insurance (HMO) wouldn't let me go to his referral. But am going to pay out of pocket for it, because she is the only PT in this area that specializes in this kind of PT per my Dr. with bio-feedback. When my vulvar pain gets worse I also have urine retention. I'm not sure if having multiple sclerosis has contributed to my condition or not, but I continue to do lower back strengthening exercises and walk a mile at least 2 X Q wk. As you may have guessed my symptoms started with repeated UTI's and the cycle of antibiotics and yeast meds. I would like to know the percentage of people biofeedback has helped and what percentage surgery has helped... realizing every patient and doctor are quite different. Your "feedback" might help me. Thank you. Jojo
CommentI have been suffering for the past 6.5 years with Vulvar Vestibulitis Syndrome I have been to a least 4 different gyn. I have had laser surgery to the muscle around the open of the vulvar which cost a pretty penny but with still no luck. I have tried nizerol and many other tablets and creams. I have suffered from thrush since I was little. About a year ago I was refered by my lastest gyn to a doctor who specilised in this area of womens problems. She was very good and we tried a few things finally I went on calcuim citrate which has to be order from America (I live in Australia) this has help quite a bit , it has not cured me but life is a lot better. It is nice to find that I'm not the only one with this problem. Lokking forwarrding to hearing from anyone.
CommentI have been suffering from this disease for 5 years, I have done a lot of research, but nothing works. I am free of the burning sometimes for 2 weeks but then it comes back again. I also have sore spots, which I treat with vaseline. I take an anti-depressant -Serzone, and a tranquillizer - Lorazapam. I pray everyday for a cure. Marina
CommentHi! This is my first visit to this site and I am thrilled to find a connection to others with this awful problem. I developed severe symptoms 4 years ago that forced me to quit my job and change my lifestyle. After diagnosis, and two biopsies, 7 doctors, and many tears of frustration, I got the low oxylate diet from The Vulvary Pain Foundation, and after nearly 3 and 1/2 years on the diet, I am finally finding relief. I just want to say to anyone who is treating this problem with the low oxylate diet, stay with it, it does work. I tried several other test programs and had either allergic reactions or no reaction, so just stuck with the diet. My pain level is much lower, I can walk for over an hour, now, still can't sit at all. If there's anyone out there that had an early hysterectomy and no estrogen replacement therapy and has vulvodynia, I would love to hear from you. Actually, I would love to hear from anyone who is suffering with this problem. Deb
CommentHi to everyone out there. This site is so helpful to read when you are having a bad day. It helps to know there are others out there who are having the same problems as I am. I have been diagnosed with Vulvodynia for 3 years now. I have been to countless different doctors to no avail. I am still miserable everyday. I have tried so many different creams and medications I can't remember them all. Has anyone out had any luck getting rid of chronic yeast infections? I feel that if I got this under control, it would go a long way towards relieving some of my symptoms (burning, itching, pain). I would also love to find a support group in the Dallas/Fort Worth area. If anyone else is interested, please e-mail me. Be strong.
CommentI am a 27 year old who has suffered from Vulvodynia for a year and a half. After countless doctors I finally found a specialist in gynecology and infectious disease. I have been diagnosed with Lichen Schlerosus and Vulvar Vestibulitis. I had chronic every day burning and pain with intercouse. Once the chronic burning was controlled, I was still hurting with intercourse, so I opted to have a vulvar vestibulectomy last February 1998. The area where the vestibular glands were no longer brings me pain with intercourse, but now its deeper inside. On my last visit a few weeks ago to my specialist she told me I had weak pelvic muscles. They spasm during penetration and this is what is causing my pain. Next week I am being sent to someone who is going to try biofeedback with me. I was wondering if anyone else has had success with this and what exactly is involved. Please contact me! Thanks!
CommentI would like to say hello to everyone . I recently found this site and it is nice to know I am not alone. I too have had painful symptons. It's actually started a few years ago with bladder infection, chronic yeast infections and painful intercourse. I never thought twice about these things because they would come and go and I could live with it , However in the past 6 months I have been in severe pain almost every day. Some days it's just annoying other days it's horrible. I have several symptons that I have read here, I have the itching and burning in the vaginal area . The burning is constant and it feels sort of like a painful tingling or like an electrical charge feeling. I also have a problem around the tailbone. My lower back gives me alot of pain and every now and then I get sorenes in the rectal area near the end of the tailbone. Somtines this soreness becomes so sensitve I can not touch the area and it makes sitting so unpleasant. Another sypmton I have which I thought was totally unrelated is a pain in the leg. I read that someother people experience this as well. I've been to many many doctors and they all think I'm nuts. I would tell them all my sypmtons then I would say that they are all on the left side of the body . None of these people have helped me. Several doctors have said that I have several diffferent this and they are not related . I believe otherwise. I finally did get alittle help believe it or not I went to planned Parenthood. ( I figure they must see everything , as far as std's or vaginal problems. ) So one of the doctors there said it sounds like vulvadynia, She didn't know much about it but she sent me in the right direction. As far as the rectal problem I've noticed that Balmex seemed to help alittle . I have deceided not to give up though and I will find something out there to help us all. We should not have to live with this pain. If there is some help someone will find it and hopefully they can share it with all of us. If there is anyone that would like to email me feel free. And I wish the best to everyone !!!!!!!
Commenti have been suffering from itching, burning and pain since September. I am 47 and at first my doctor thought that I was just suffering from vaginal dryness. I have been on Premphase for 3 months and I feel better in all other aspects, but the vulva problem did not go away. I am having a biospy next week and I hope that something will finally be resolved with this procedure. Does anything really work for these problems? It sounds like from reading the guset books that no one ever gets better. I feel that this has turned my whole life upside down. I have a wonderful husband and I feel that I am wrecking his life too. I don't know what happened to me, one day I was fine and the next I was like this. Is there any hope for us?
CommentIf anyone in San Diego would like to communicate, please e-mail me. I've found relief with Estrace cream, hot baths with tea bags, and Vitamin E oil applied to the Vulva. Sitting for long periods of time aggravates Vistibulitis. Often I feel like I have to urinate, but I really dont, and it's not a UTI infection, because I've had my urine checked. I'm tired of feeling like a freak too, and wonder what I did to deserve this suffering. I have to keep telling myself that there is hope for a cure for this disease. Sue
CommentI am so glad I found this page. I have been having this burning sensation for a while now, and I have been having vaginal dryness. I seem to only have the burning sensation after intercourse, then it does go away. It lasts sometimes hours or days at a time. It only occurs after sex however, I don't have a constant pain, but I think that this may just be what my problem is. I have just been to my doctor for my usual check up, I am on the Pill so I have to go every six months, he did a PAP and it came back normal. He did not notice anything wrong. Like i said i have vaginal dryness, and now this pain after sex. Could this be a resault of being on the Pill? Is there anyone else who is on the Pill and has these symptoms? I have been readig about the different things to try, but do they really work? Does anyone have any advice for me, what works to stop the pain? Or am I only having this pain becuase of the vaginal dryness? If you can help and want to email me, please do. Thank you and good luck to us all.
CommentI was diagnosed with vulvodynia a year ago. It has been the longest year of my life. I have been to many doctors. I tried to take Elavil but the side effects were worse than the burning. The gyn doctor referred me to Dr. Glazer who I went to see for the first time in December. He explained to me the proper way to use the biofeedback machine and a protocol to follow. Prior to seeing Dr. Glazer, I went to a local physical therapist and had experimented with biofeedback. When I first saw Dr. Glazer, he immediately advised me that I had not been using the equipment correctly and not following a program that would lead to improvement. I took Dr. Glazer's advice and instructions and I went back to see him a month later. Based on his testing, I had improved in both vaginal muscle strength and relaxation capacity. I have had less burning since beginning biofeedback and using it correctly. I seem to have more good days and the burning is less intense. I feel that I am on my road to recovery. I have tried many of the creams and other treatments, including medications and have not had the success that I am experiencing with this approach. I did not realize that we had a place to enter our comments and I am glad that Dr. Glazer has given us this opportunity. I will write back after my next visit in three weeks and let you know if the burning continues to improve. I wish that I had started this method of treatment a long time ago.
CommentDr. Glazer, I'd like to thank you so much for having this web site. I am 32. I've had vaginal pain and burning for the past year and a half. Since I didn't have any vaginal warts or anything visible, the doctors dismissed this problem for months. I went from one gynecologist to another. Finally, I went to a doctor who had heard of these symptoms before, and she sent me to a doctor who knew about vulvodynia. The treatment helped me a lot. I haven't been able to continue as my doctor would like, however, because my HMO decided that I'd had enough treatments. I didn't know, until I read on this site, that vulvodynia tends to accompany such problems as migraines, back pain and irritable bowel. After a car accident, I had all of the above mentioned problems and also a urinary tract infection for which I was given Cipro. I really didn't have any vaginal burning until after my 3rd dose of Cipro. What bothers me most of all are my food allergies which I've suddenly developed. I immediately feel vaginal burning if I eat something which for some reason disagrees with my body. Is there any way to get over this? Is my body just not breaking down food properly? One more question. I was, at the time of the accident, working in an environment that made me ill. I was working around chemicals and metals which I found out I was allergic to. I broke out in hives on my second day at work. I'd never had them before. I was told that hives can damage your nerves. Can this have a part in this whole vulvodynia matter?
CommentI am 25 years old and have been having symptoms of vulvar vestibulitis for one year. I have been married since May of '98 and my husband and I have only been able to have sex a handful of times. This is very distressing, as we used to enjoy an active sex life. Now, I associate having sex with pain and he associates having sex with inflicting pain on me. He is extremely understanding, but this is very frustrating! I also have the sensation that my vagina is too "tight" or somehow blocked when he tries to enter me (is this a psychological phenomenon)? I have been diagnosed with "recurring yeast infections". My doctor is aware of vulvadynia, but says that the pain in the entrance to my vagina is caused by the recurring infections. I am a bit confused about this. Do I have vulvadynia? I have taken many antibiotics and yeast infection creams. I am also using Aci-jel twice a week which seems to help. My only symptom is that I have pain during intercourse (and discomfort upon inserting tampons) and occational burning when I sit for long periods or wear blue jeans. I am saddened to read of all the women who are suffering from constant pain. I can't help but think that if men suffered from a similar disorder (i.e. one that interfered with their sex life), the entire world would be informed and working for a cure. Instead, in this situation, women are suffering and many doctors aren't even aware of the disorder. I am glad to see the various web sites dedicated to creating awareness of this problem. I welcome any comments or suggestions.
CommentMY ROAD TO RECOVERY If you are reading this, you are, no doubt, facing a desperate situation. For more than a year, I scanned hundreds of websites, hoping to find an answer to my chronic pain. It began in 1997 as a yeast infection. I'd never had one before and tried to treat it with an over-the-counter medication. Despite my self-treatment, nearly two weeks passed and I was still feeling a burning sensation. I visited a local "quick-care" clinic for diagnosis. After examination, the physician determined my yeast infection was still present. He prescribed a week of oral anti-fungals, and the yeast infection disappeared. The debilitating burning sensation, however, did not. I was a healthy, active, professional, 27-year old woman. There was no reason to believe I was facing a year and a half of chronic pain, depression and hopelessness as the result of a yeast infection. But that is exactly what happened. Before long, my life was consumed by my pain. No matter what I tried, I could not find relief. I could not walk, sit or function without thinking about how badly I felt. The burning sensation was unbearable. I soon turned to a litany of doctors for help. I started with my regular gynecologist. He told me the burning was the result of my stubborn yeast infection. For a three month period, he prescribed weekly anti-fungal pills and steroid creams. I later found out that this misdiagnosis only made the problem worse. When the pain still would not go away, I began to get desperate. I visited four more doctors, including a dermatologist. Not only could they not find the cause of my pain, they began asking me if it was psychosomatic. One doctor even had the nerve to ask me if I was imagining the pain in my vulva to avoid having sex with my husband. The chronic pain, coupled with my sense of hopelessness, began having dramatic effects on my personal life. One of the hardest things I had to face was avoiding sex with my husband because the pain was so intense. Although he understood my health problems, we both missed our intimacy tremendously. This translated into a magnified sense of guilt on my part. I wanted to be close to my husband again. I wanted to share myself with him. Yet, I couldn't because the pain was so unbearable. After months of tears and emotional breakdowns, my husband said he was determined to find a doctor who could help me, no matter what the cost. Together, we scanned the World Wide Web, looking for anything that would explain my intense burning and pain. Over and over, we ran into the same ominous word-Vulvodynia. And, let me assure you, the description and outlook were even more depressing than the pain I felt. That is, until I stumbled upon one web site which offered help. It referred to a Vulvodynia specialist, Dr. Stanley Marinoff. A month later, I was at his Washington, D.C. office undergoing extensive testing, biopsies and blood tests to determine the etiology of my pain. Dr. Marinoff determined my problem was indeed a chronic condition called Vulvodynia. The entrance to my vulva had become extremely irritated and inflamed-and my prognosis was unknown. Dr. Marinoff prescribed a low dosage of antidepressants to help block some of my nerve pain. In addition, he recommended soaking in the bathtub for 20 minutes a day and rinsing after trips to the bathroom. Most importantly, Dr. Marinoff referred me to Dr. Howard Glazer, a clinical psychologist specializing in biofeedback therapy. Although I was unfamiliar with and unsure of biofeedback, I was ready to try anything. For 20 minutes, two times a day, I now practice strengthening and relaxing my pelvic muscle with the help of a special sensor inserted into my vulva. The exercises are helping me gain stability and control, and miraculously, the technique is alleviating my pain. I have been practicing biofeedback therapy under Dr. Glazer for nearly six months and am feeling like my old self again. I go for days without experiencing pain and Dr. Glazer assures me that in a few more months, the burning will completely disappear. I am starting to exercise again, have sex regularly and function normally. Most importantly, Dr. Glazer gave me my spirit back. I can finally see the light at the end of the tunnel. The love between my husband and me is deeper than ever. I now realize how important the vow "in sickness and in health" really is. Thanks to Dr. Glazer's constant support and care, my husband and I are looking forward to a short road to recovery---and a long road of happiness together. Dana M. Newport News, Virginia 2-4-99
CommentI feel like a rookie at this compared to some of you. I've only had the pain and burning for about 2 months, but it seems like an eternity. My doctor seems to have given up and his last recommendation was Aveeno oatmeal baths, which I haven't tried yet. I'm 40 years old and never had any major gynecological problems except an occasional yeast infection. After taking antibiotics for strep throat almost 3 months ago, my symptoms started. I was diagnosed with a bacterial infection (Klebsiella-?) and a yeast infection. I was given Metronidazole twice and Keflex once(7 days each time), while using an antifungal cream. Next I was given Diflucan, then Lotrisone, which is an external antifungal plus cortisone. None of these things helped and some made the symptoms worse. The last culture I had was negative, so I'm desperate at this point. Sex causes great pain and burning for 2-3 days afterwards. I am amazed at the number of women out there suffering from this disorder and it seems that so few doctors have any clue as to how to treat it. I'm going to try calcium citrate and a low oxalate diet, and am even thinking about an antidepressant, although I've heard some horror stories about side effects. I also have hemmoroids and rectal pain, as some women have mentioned. Is there a connection? I may go to a Naturopath to try some alternative treatments. At this point what do I have to lose. To all of you out there suffering from this disorder, I pray you find an answer.
CommentTo Paula who wrote on 2/4, I tried to write back to you, but your e-mail address didn't go through. Please write to my e-mail address if you need any help or advice. Sue
CommentI am delighted to find this information. I believe that I have been suffering from this symptom for the past two years. I was fine until I had vaginitis and then I experienced almost all of the symptoms associeted with the ailment. The doctors have not been able to help me and I'm hoping that as I take this information to the OBGYN he'll be able to refer me to someone in CT for help. Thanks for this site and the great information you provide. Until yesterday, I thought I was going insane.
CommentG'day. I have posted my details before, but I had heaps of questions that I wanted to ask. I have tried a miriad of therapies and treatments, and have only just figured out that one of them was biofeedback (I think) It was with an Australian physiotherapist, and she told me I had very weak pelvic floor muscles. I had to rent this equipment ($70 per month), which "buzzed" a lot to help me strengthen the muscles. Is that the same thing???? I did find that I was having success with the treatment at the time, but that was over 2 years ago, when I was demanding results and it just wasn't good enough. I stopped doing it for a number of reasons, but the main one was that I was told not to do any impact sport. I love netball, jogging, cricket etc. All which were impact sports. I had to give up all of these things and I was wondering if this is correct? I probably would try it again if I could continue being an active 22 year old. This "thing" has already turned my life upside down in so many ways. I'm still not ready for that kind of sacrific (I'm wanting to join our army reserve here too, so I couldn't avoid that kind of impact activity there). Does everyone out there trying biofeedback have these restrictions? Please write if you have any info. I am so desperate for help :(
CommentI am happy to have found this website. I have been suffering from this condition for over 2 years and I am 34 years old. I have been to numerous doctors and none of them seem to know what all this burning and itching and red swollen vulva area is all about. I also was diagnosed with extensive endometriosis and had laproscopic surgery 2 years ago. Still don't feel any better. I was wondering if Dr. Galzer could tell me if vulvodynia and endometriosis are connected in any way?? I have lower back problems, and I wonder if this is connected to my Vulvodynia. I find that some floor exercises stretching the muscles of the back sometimes relieves the burning. Also, an OBGYN I went to five times prescribed oinment called mycolog cream, also called nysistatin trimelyecone cream (not sure I spelled it right). This is an anitinflamatory antifungal cream and sometimes I resort to it for relief of the sever burning and redness, and it does help sometimes. Also, after urinating, wiping with a wet toilet tissue sometimes helps. These things help, but the burning never really seems to go away. I would be interested to seek a doctor in Northeast Pennsylvania, Scranton area, or New York, or Northern New Jersey who might be able to help. Anyone have any suggestions? Thanks for listening.
Comment
CommentDr. Glazer, I am going to go out of network to a PT on your list recommended by a vulva specialist in Cincinnati. My insurance paid for 3 trips to this specialist (out of network) . My HMO has no out of network benefits. Anyway what would be your suggestion for trying to get my insurance co. to pay for the "machine" (can't remember the name) that the PT will probably want me to take home? Will be paying out of pocket for the PT, would rather not for the machine ... think it's around 1000. Please respond. Thanks. Jojo
CommentI have been diagnosed with vestibulitis. Have had it about a year. I have been taking elavil for about 6 weeks. I have not noticed any difference. How much elavil does it take? If anyone can help me out, I would appreciate it.
CommentI have also been to several doctors with no help.I was told it could be in my mind.I experience burning when I have intercourse and it has been hard for me to get pregnant.I am glad I heard about this and now I can have my doctor check me for it.Thanks everyone for your comments. Donna
CommentHello everyone! My story is the same as most of yours- no libido, pain during intercourse, general irritation of the vulvular area, endometriosis, dysmennorhea, and last but not least cervical dysplasia. Of course, all of my previous doctors that i have been seeing in the past have told me that i am just sensitive and need some KY and therapy. Luckily, my healthcare plan changed and i met my current doctor who was able to diagnose the problem. unfortunately the only specialist she knows of is located in Washington, DC (an hour away). i lve in Annapolis and work in Baltimore and have been searching the web for referrals in these areas. i have scheduled a call for tomorrow with a staff member at Johns Hopkins- they are conducting a study on vulvodynia! I will let you all know how it goes and provide the info i have on this study to anyone who wishes to email me. Take care!
CommentI havejust been told that I have vulvodynia and am going to the U of M clinic for help. I have to wait until August for an appointment, so I would like to hear any input on this diease. Has anyone out there had success with any treatment? I have only had this a short time, but it is a very hard thing to accept for the rest of your life. I would like any information that any has on this problem.
CommentI hav esuffered for about five years. The thing that helps me with the pain during sex is Lidocane. It's a prescription and numbs the painful region. It does not interfere witht the actual feeling of sex. At least I can have sex that is not painful, it feels great!
CommentTerry, I went to see Dr. Sevin(I think)at UM. He was horrible. I would never go tot him again. He told me to have a surgery and diagnosed me with things without a biopsy. You may want to look into other people. This is not my computer so please don't send info here.
CommentThis is a miracle that i found this site. I can't believe some of the things that I'm reading. I'm in so much physical and emotional pain. Just recently diagnosed with vulvodynia.
CommentHi, like everyone else here I'm suffering from vulvodynia and it's the same old story - unsympathetic doctors, treatments for yeast infections and urinary infections that I don't have, wondering where the hell I can find someone who will listen to me and help me. I'm 25, have had problems with this for EIGHT years (have never had pain-free sex and am now engaged to be married so would really like to finally experience making love without the agony), and have had the constant pain for 18 months now. For many years I thought I was a freak, it's a relief to know at least I'm not alone, and I hope together we can find a cure for this. Some days I do feel desperate though as it is affection my daily life now and I don't know what to do, the pain seems to get into everything I do at the moment, I can't even forget about it. I'd love to hear from anyone in the UK who has any advice as obviously treatments etc are different over here. Especially is there anyone out there in SCOTLAND as I've just moved here a week ago? Take care all of you, I'm hoping we'll all get through this.
CommentDr. Glazer and anyone else in the guestbook, I saw you briefly through Dr. Rodke in NY. She is no longer on my plan and is so busy it takes days to weeks to get an appointment or to even get called back. I am looking for recommendation for any doctors in NYC who are familiar with the condition and it doesn't take months to get an apoointment. Any suggestions would be greatly appreciated.
CommentHi! I've written before. I have been diagnosed with Vulvodynia 1 1/2 years ago but have been suffering for 2 1/2 years. I used to be really bad, but I am finally feeling a world better! I can wear pants again (still not jeans), I can even have sex! It isn't very pleasurable yet, but it atleast isn't exruciating pain anymore! I beleive that BORIC ACID every night helped me and a low-sugar and low-carbohydrate diet. If you are burning and raw, you must first get rid of the bacteria and than the yeast. This is how my doctor took care of me. But you still have to be patient, because the i didn't feel results with the boric acid until after 1-2 months. my wedding is this June, and I am hoping to really enjoy my wedding night and my honeymoon! I know that it is hard, but we have to keep up the faith! WE ALL WILL GET BETTER WITH THE PROPER HELP AND WE MUST TAKE CARE OF OURSELVES. GOOD LUCK AND GOOD HEALTH!
CommentThank you so much for creating this website. It has provided me with not only a great deal of information on a condition that my physician has failed to diagnose but with some hope that some day more medical professionals will become aware of this condition. It took me 1 year to find anything about this condition and I educated my physician. Reading the guest registry has made me realize that there are many other women who can relate to the physical and emotional pain I have been suffering for 3 years. I hope a cure is found for this debilitating condition which too few medical professionals are knowledgeable about nor care about. Perhaps it is not life threatening in a physical sense, but it certainly is in an emotional sense as I have been through hell with this condition. I pray and hope for all sufferers that one day a cure will be discovered and I thank you for your work in this area.
CommentHi,it's been awhile since I posted but have been reading all the new posts and continue to be dismayed at the number of women continuing to suffer.I am doing very well,and have been virtually painless for almost 2 months now.Although I occasionally feel some of the burning sensations and the feeling that perhaps I am about to get another bladder infection.When this begins I immediately begin drinking lots and lots of water to flush my system. I then analyze the situation as to what else could be contributing to the burning;such as using toilet tissue in public restrooms,what I may have eaten,etc.I find it very important to take only showers and I use a very mild soap to bathe with(such as Ivory)I always resist the urge to soak in a tub.Even when I really would like a long soak in a tub of Aveeno.I notice a lot of the women make mention of soaking in a tub of Aveeno. It's so important to remember though,that no matter how clean your tub may appear to be- there is always the residue of soaps or cleaning products on the tubs surface.So I would recommend only showers!!!The only change I made in my eating habits is that I really cut down on my soda intake.I wash all my clothes in detergent made especially for baby's laundry.My husband and I found that for us,any of the lubricants(even Astro-Glide)simply made the burning during or after intercourse,worse. So we don't use any of that now.It's also important,I have found, to wash the vaginal area,immediately after sex.This is very important.And of course use unscented toilet tissues(try to stick to the same brand all the time) These are just a few of the trial and error tips I wanted to pass along. I have totally given up on using any doctor for treatment After making that decision,I seemed to get better.I think because I knew I had to help myself and that I alone had to beat this thing.Maybe it's a combination of mind over matter as well as the above mentioned things.All the tests and swabs and cultures in the world were Not helping with the pain- so I said to hell with all of that. I wish all of you good luck and hope if you decide to have any of the surgical procedures done,or for those of you who have already had procedures done, that it will help you.And perhaps one day this dreadful disorder will be a thing of the past.God bless everyone.
CommentHello everyone, so glad to have this forum to vent and for the chance to get helpful info. It is important to know that I am not alone. I have had vulvar pain for 20yrs. I think now that it started when I was about 18yr old and had a severe pelvic infection. I remember having yeast infections when I was in my early teens but also remember having burning when I was a little child. I did not experience pain with intercourse until after the pelvic infection. My first Dr. tried several things from Burrows soln soaks, testosterone cream, antifungals, heat lamp treatments etc with no help. After a year or so with out relief, I went to another physician for a 2nd opinion. He mainly thought it was in my head, or vaginismus. Needless to say I returned to my prev. Dr. who diagnosed me with "chronic vulvitis". She was sympathetic but felt she could do no more. I stayed with her mostly because she was kind and there were few choices of Gyn's in my area. I tried for years to "doctor" myself. At times it subsided and at other times I felt like raw hamburger meat, but it never went entirely away. I just tried the best I could to deal with the pain and the marital problems it caused due to very infrequent sex. For a while I would have sex with my husband in the dark while biting my lip and crying in silence. Then one day I decided that I shouldnt subject myself to that kind of pain for anyone, and stopped that insanity. So the emotional stress of constant pain and irritation combined with marital discord over lack of |
