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CommentHello, I just stumbled onto vulvar vestibulitis information in a health magazine and figured that this must be what I have. No doctor has been able to tell me why I have pain at the opening of the vagina. I am now 27 - it all started when I got married 4 years ago and started having intercourse. Before this I just suffered with cronic bladder infections. It was very painful during intercourse. I thought that pain would last about a month or two but it is now years later. I just had my second child and never had an episiotomy. I was wondering if that surgery would help stop the pain during intercourse. Does anyone have any ideas? It is affecting my relationship with my husband and I am just not interested in intamacy anymore. To think of intercourse just puts me off. Help!!
CommentHi! I'm 23 years old and I've been suffering from vulvar pain for more than 5 years, including severe dyspareunia and also some generalized burning (especially before my period). After seeing a countless number of doctors I was finally diagnosed with vulvar vestibulitis. I have tried a plethora of different treatment options, but so far they have been of little or no help. For example, I've tried anti-fungals (e.g. Diflucan), topical estrogen, steroids, E-vitamin, and tricyclic antidepressants (which made me both dizzy and tired). In addition, I have stopped taking my birth control pills (I really haven't had any use for them in the past few years, anyway...) and I have tried to avoid high-oxalate food. However, the pain persists... Since nothing else seems to help I am now considering having a vestibulectomy. I have heard that the success rates have been reported to be very high, although many obviously still remain skeptical. It would be really nice to hear from people who have been through a vestibulectomy (both positive and negative experiences), please e-mail me if you're willing to share your thoughts on the subject. It would also be nice to hear from other vulvodynia patients in Scandinavia (or the rest of Europe), I can hardly be the only one outside the US who is suffering from this devastating disease! I think that this guest book is a great idea, thank you very much Dr. Glazer. The vulvodynialist is also an excellent idea, I've already decided to join it. Finally, I would like to wish all of you visitors a quick recovery and many painfree days...
CommentWelcome all to the new vulvodynia.com website. I hope you that this site combines all of the aspects of the old site which you have come to value combined with a more user friendly and easy to access organization of the information. I thank you all for coming to the website and would be pleased to receive your feedback.
CommentHi Doctor Glazer, I am 38 years old and have had vulvodynia for the last three years. I started having symptoms around 6 months after a hysterectomy. At first my doctor thought it was fungal. So, I constantly used antifungal creams which seemed to help at first. The symptoms slowly got worse. I went from doctor to doctor until I finally found a Nurse Practitioner who deals with vulvar pain. She has me on Diflucan once a week for the first month then once every two weeks for the next month then once a month for a month. Hopefully after that I will be able to get off of it. I am also having to do regular muscle exercises of the vaginal area. It is very difficult. After 5 or 6 of them, I am very tired. If there is any thing else you can suggest for me to do please e-mail me. I am so tired of being in pain. I also have other problems along with this-feeling tired all the time, irritable bowel syndrome, and I am getting very depressed. Does the diet thing really work and also does taking calcium citrate really work? Well, I am going to read the rest of the info from the other guest books to see if anyone else can help me understand some of this. Thank you for taking the time to help with this awful disease.
CommentWhat can be done for a patient with CFIDS who cannot take antihistamines because of Sjogren's Syndrome. I have already tried Tegretol which caused a SUBSTANSTIAL drop in my white blood cell count. What about diet? Is there any proof it helps?
CommentHi! Thank you Dr Glazer for this fabulous new website - it's great. I've had vulvodynia for 3 years, and I WOULD ESPECIALLY LIKE TO HEAR FROM ANYONE IN ENGLAND OR UNITED KINGDOM - EITHER FELLOW SUFFERERS OR DOCTORS ETC, OR WOULD BE EXTREMELY GRATEFUL IF ANYONE COULD FORWARD ME DETAILS OF ANY GOOD SPECIALISTS OVER HERE. Thanks alot - any replies welcome - and I guarentee to respond!
CommentI was diagnosed with VVS and had several different treatments before and after diagnosis. After researching the internet, I'm sure I have vulvodynia. I am very interested and encouraged by your non-invasive and pretty successful treatment. I want to learn all I can before my appointment at UCLA.
CommentMy mother is suffering horribly and I'm trying to understand the disease and find options for her. We live in the Bay Area.
CommentI am looking for a support group in Maine and find all the groups I have investigated on the Web are not in my area. any suggestions?
CommentI am surprised to find so many people with this condition and so many doctors that have never heard or dealt with it. I am on my third doctor that has finally told me what is wrong. He told me to become an expert on this problem and to see what is available and we would try the treatment. I am trying to see what most of us have in common. Is there anyone else out there who has had recurring Urinary Tract Infections? Endometriosis? Living with diarrhea and constipation? Hormone inbalance from changes or Hysterectomy? Please write back with your info. Thanks - Bonni
CommentWhile browsing through the health site I came across material about this condition & I believe this is what I have been suffering from for at least 4 years. I couldn't believe such a condition actually existed or that so many other woman have it. I have been to the doctor several times, suspecting yeast or bacterial infections. Each time the tests have came back negative. I was told to avoid scented toilet tissure, laundry detergent, etc. I was even told the burning & itching could be caused from the sanitary products I was using. During my last checkup (I'm due again next month) I was told if the problem continued, my doctor would preform a biospy of the vulvar & vaginal tissure to try & pinpoint the problem. I can't wait to ask him if vulvodynia could be it. I experience pain during intercourse, almost all the time. The pain is worse during the initial pentration. Sometimes its unbearble. Fortunately, I have a very understanding husband. I can actually pinpoint the exact spot, right inside the vagina, where it hurts the most. I also experience burning & itching of the area right around the vagina. I can go for days, sometimes weeks, with no symptoms, then suddenly it starts up again. Up until this point, I have only been using hydrocortisone creams. It seems to help, but only temporarily. I would appreciate any information I could share with my doctor. If this is what I have, I would be willing to do or try anything to relieve it. Thank you for any help you can give me. Diane
CommentThank you Dr. Glazer for setting up this website! I hope many women discover it and learn more about the condition. I am 28 years old and have had vulvar pain for 5 years. Fortunately, I discovered a support group locally, and a doctor who was familiar with the condition (after about a year of wrong diagnoses and frustration). I still am not pain free but am much better using calcium citrate, a low oxalate diet, amd biofeedback. I believe the diet really helps. My life has been changed by constant burning pain, but I am happy to say I have a wonderful husband, friends and family who support me.
CommentI have only recently had many of the symptoms related on this page. My doctor did the usual testing and things came out negative so I decided to investigate on my own. Neurological disease runs in my family, but I have also experienced several bouts of other autoammune problems including unexplained joint pain/swelling, chronic fatigue/sleep disturbance, and irritable bowel syndrome- like symptoms, lymph gland swelling that do not follow a pattern. Nobody else here has mentioned possible links to thyroid disease. I'd like to know if this has ever been linked? I have only had vulvular symptoms for 6-7 months, but other symptoms have plagued for much longer. My loss of interest in sex occurred before the pain appeared, as well as frequent feelings of physical depression (which then effect my mood). I'd like to know more about any studies being done, and the wide variety of symptoms linked to the disorder. Thanks to this site, I think I've helped my wonderful doctor find out what is wrong. She thought her microscope was broken!!!
CommentHello! I am 27 years old and so thankful that I found this website. I just went through a year of cultures, tests and finally this week found this information and realize this is what I have. I would like to find a new doctor in the Baltimore area. If anyone has had any luck finding one that deals with vulvodynia, please email me with their information. I am desperate to get this taken care of. My husband has been the best, but I can't take this pain anymore!
CommentDr. Glazer, I have been suffering from an undiagnosed condition for over 12 years now. When I stumbled upon the vulvadynia website I felt like God had directed me here. I have been to countless doctors, been told my problems were "all in my head", that the chlorine content in my well water was the problem, etc. From what I am reading, most of you are familiar with the merry-go-round I have been on. I have been trying the topical estrogen cream for about a month now and have been pleased with the almost immediate relief I experienced. But the past week I have been dealing with an extreme amount of itching, some burning and just touch tenderness. Is this a common side effect from the use of the estrogen cream? Is there something else I need to be doing in conjunction with the cream? Any help you could give me would be most appreciated.
CommentI am 19 years of age and am suffering from what I believe to be Vulvodynia. Numerous doctors have examined me and haven't a clue as to what I have. They cannot find anything wrong with me at all. I suffered from a lot of bladder infections in the past and have had painful intercourse for the last 3 years. It is greatly affecting my relationship with my boyfriend. There is a great deal of itching and stinging in the vulvor area. My doctor has requested for me to visit a counselor and gave me a topical sterroid to start off with. If that does not work he wants to put me on an anti-depressant. He thinks that it is related to sexual abuse. It is affecting me mentally also. I sit and wonder what the future holds for my intimate life. What do you recommend me to do? Please help me find out if this is vulvodynia. Thank you kindly, Leis (Warren, MI 48089)
CommentMy current dr is recommending local steriod injections. Does anyone have experience with this? If so, I would really appreciate your feedback.
CommentI have suffered from vulvodynia for 4 1/2 years. I am now 25. I too was misdiagnosed with yeast infection after yeast infection until finally the doctors just gave up. I have tried creams, antifungals, surgeries, etc. but to no avail. I finally did some research and have had some positive results. I first tried the low oxilate diet along with calcium citrate as suggested by Dr. Solomon in Colorado. This did help for a while, but I grew tired of having take 5 calcium citrate pills a day at specific times and watching what I ate. I stopped taking the citrate and the pain returned. I was never fully "cured" and I love chocolate too much (which, of course, is full of oxilates)so I looked into other options. I became involved with a nutrition-based company and started making healthier choices for myself. I no longer wear any panties other than cotton. No more silkies! Panty hose are another thing that have to go too. Thigh highs- they're much more attractive for the guys- garter belts and all. I take daily requirements of essential minerals and other vitamines like E,C,Betacarotenes, etc.. I have also been detoxing for one year. Not continually though. Get a good cleanser from a health food store-bowel, kidney, liver. They may not be all together so you may have to do one and then the other. I have actually had a decrease in PMS cramping too. It is amazing how your body responds to good stuff. You amy think it sounds like a lot to do an too long a time, but after being in intense pain for years it's worth the everything. I am not on the low oxilate diet now and my pain has subsided substantially. I am now keeping a diary of what I eat everyday so I can see if maybe it's an allergic reaction to something.I used to have to lay down instead of standing or sitting because I was in so much pain. Ladies-it's not all "in your head" like some of the doctors are telling you. I also have been getting an adjustment from a chiropractor every week. I just read about a doctor who is researching lower adjustments and vulvar pain. I also use Lidocane (prescription) before intercourse. I apply it on outside and along wall just prior to sex. It numbs the pain for a while but the important sensation is not numbed-if you get my drift. I can actually have great sex again.
CommentI am 33 years old and has suffered for almost 3 years now. I recently moved to Cheney, Washington (outside of Spokane). I am very interested in a support group for this area. If anyone lives this way, please email me. Also, I have some news to share to the many women out there who have suffered in silence for so long. First: Join the Vulvar Pain Foundation in North Carolina. Call Tuesday and Thursdays 910-226-0704, P.O. Drawer 177 Graham, N.C. 27253 USA. It will help connect you to others with this terrible disorder. Second: Get yourself a knowledgeable doctor. If he/she says you need a therapist or more KY jelly, fire him/her. There are doctors who aren't ignorant about Vulvodynia. You just have to locate them. Third: read, read, read. Make yourself find as much as you can on your disorder and educate family, friends and God forbid your own doctor. And last, get a journal and make a paper trail. Write down, everyday, your pain level on a scale of 1-10, 10 worst, and what you eat and who treats you and what drugs you take and so on. The more you can bring into the doctor the more you will feel in control of this horrible ordeal. Now, on to what works and doesnt for ME. Remember, we all have diffent bodies and what works for you may not for me. I had the oxalate testing and I have high oxalates. I have been on the diet strictly for over 2 years with the calcium citrate. I have not seen dramactic improvements and when I stopped taking the calcium, my pain reduced. This doesnt mean everyone should stop, just give yourself alot of time before you quit. The estrogen cream didnt help me. I was on Elavil (tricyclic antidepressant) and had bad side effects, so I was switched to a sister drug called Pamelor. I did notice some improvement, but gained 25 pounds. Baths help me tremendously and ice packs. I have seen the specialist, Dr. John Willems in San Diego. If you can see him and you are geographically desireable. GO. He is wonderful. He doesnt condone ice due to potential frostbite( I swear) but I use coleman freezer packs and put them in a pillowcase so I dont expose my skin to the ice. I tried the Instant Ocean, which you can find in most pet stores. It is sea salt and I found some pain relief. Lastly and more exciting, I am doing physical therapy (almost 2 years now) and we are trying a new technique. ULTRASOUND. I am seeing DRAMATIC pain relief. It is not permanent, but I have been in pain on a scale of 7-8 and left a 1-2. Honest. It helps with the MAST cells and inflammation. It is non-evasive and does not HURT!!!!!! It is not a cure, but it is working for me. Boy this is long, but I wanted to offer some insight into what has helped me. Is anyone trying this and does it help you. Please e-mail if you need any other information or you live near me and want to start a group. Remember, we will get better one day. Pain free one day. Don't give up and take one day at a time, minute by minute. God bless us all with this....Debbie
CommentJust posting a note to the guestbook to make sure everything is working O.K. Hope all the visitors are finding the new version of the vulvodynia.com website informative and user friendly. Best of luck to all. Howard Glazer Ph.D.
CommentTHERE IS A NEED FOR A PRACTITIONER IN THE ATLANTA, GA OR NASHVILLE, TN AREA.
CommentI was finally diagnosed with vestibulitis in St. Louis over 1 year ago. I had a vestibulectomy performed by Dr. Godofredo Herzog in May. I am happy to report that I am well, happy, and NORMAL. He is not on the reference list but he has an office on Graham Road in St. Louis. (314) 839-8890. I hope this can help someone else. Best Wishes!
CommentI am 28 years old and have not yet been diagnosed with vulvadynia. However, mant of the symptoms that I have are in direct corrolation with that of vulvadynia. I am in desperate need of some information on any doctors or other health care providers in the Albuquerque, New Mexic o area that may be able to help me get an accurate diagnosis. Currently I am seeing a wonderful OB/GYN who has no knowledege of our painful condition. I am very frustrated and feel as though I am not getting the answers that I would like to have. I have the most wonderful and patient husband any woman could ask for, however I dislike the fact that we are unable to have sex on more of a regular basis. We are lucky to have it 1-2 times a month, if even that. My doctor has me going to the physical therapist and will eventually send me to a pain mgmt. clinic. Do these things help any of you? I have seen the physical therapist approx. 30 times in the past 3 months, and I have had no lasting relief. How about surgery? What types of surgey are there to help allieviate some of this pain and discomfort? Please e-mail me with any answers you may have. I pray for every one of us with this horrible and terribly painful condition. God bless you all..... Cobi
CommentI was recently diagnosed with vulvodynia. I've been experiencing pain for about a year. I had my first bacterial infection a year ago and ever since then intercourse has been painful. I'm single so I just have been avoiding relationships. Now I've been dating someone for three months and finally went back to the doctor again thinking something must be wrong. She gave me a topical gel to numb the area and suggested antidepressants if that doesn't work. Does anyone else use topical gels? Seems like it just stops the pain during intercourse but I often still feel sore after.
CommentI am 30 yrs old and after 2 months of burning hell and 4 doctors, I was finally diagnosed with VV. I spent the whole summer on antibiotics and steriods for sore throat, ear infection, etc. I was diagnosed with yeast then bacterial infections. I was treated with Diflucan, Metrogel, Cleosin, Metronidazole pills, and Terazol. Finally, I found a good doctor. She gave me Aristocort, which did wonders to reduce the pain of the vestibule. However, the burning continued. I also take 20 mg of Imipramine (an anti-depressant). I just got married in May and we have not had intercourse since July. It is so depressing. He is very understanding, but I am still depressed. The thought of sex makes me cringe with pain. For some reason, I seem to suffer less on the weekends. My husband thinks it is exacerbated by stress. Most days the burning is on the inside, but sometimes I burn on the outside. Some days I just have a raw, irrated, dry feeling. I have felt better the last few days-don't know why. I have even been walking twice with no problems. I do all the "cotton panties, no soap, special detergent, etc. stuff", but I can't pinpoint if anything helps. Sometimes I get so upset when I think of enduring this pain for YEARS that I have to take a XANAX just to get a grip. I have an appointment with a specialist (Dr. Fred Ingraham) in Jackson, MS on Nov. 2. I heard that he has published some things on VV, so he must know his stuff. Has anyone seen him? Also, I read about an antifungal cream called ketoconazole--has this worked for anyone? The article I read said that "Non wart vestibulitis can be cured" with this. That's a pretty bold claim. Has anyone tried it? God bless all of us suffering from this horrible condition.
CommentI am 30 yrs old and after 2 months of burning hell and 4 doctors, I was finally diagnosed with VV. I spent the whole summer on antibiotics and steriods for sore throat, ear infection, etc. I was diagnosed with yeast then bacterial infections. I was treated with Diflucan, Metrogel, Cleosin, Metronidazole pills, and Terazol. Finally, I found a good doctor. She gave me Aristocort, which did wonders to reduce the pain of the vestibule. However, the burning continued. I also take 20 mg of Imipramine (an anti-depressant). I just got married in May and we have not had intercourse since July. It is so depressing. He is very understanding, but I am still depressed. The thought of sex makes me cringe with pain. For some reason, I seem to suffer less on the weekends. My husband thinks it is exacerbated by stress. Most days the burning is on the inside, but sometimes I burn on the outside. Some days I just have a raw, irrated, dry feeling. I have felt better the last few days-don't know why. I have even been walking twice with no problems. I do all the "cotton panties, no soap, special detergent, etc. stuff", but I can't pinpoint if anything helps. Sometimes I get so upset when I think of enduring this pain for YEARS that I have to take a XANAX just to get a grip. I have an appointment with a specialist (Dr. Fred Ingraham) in Jackson, MS on Nov. 2. I heard that he has published some things on VV, so he must know his stuff. Has anyone seen him? Also, I read about an antifungal cream called ketoconazole--has this worked for anyone? The article I read said that "Non wart vestibulitis can be cured" with this. That's a pretty bold claim. Has anyone tried it? God bless all of us suffering from this horrible condition.
CommentI am 19 yrs. old and have had vulvodynia or vulvar vestibulitis since May 28, 1998. In April I was diagnosed with a vaginal infection called Bacterial Vaginosis and was treated with Cleocin. I do not know whether that could of brought this on some how but this happened soon after I was finished with the medication. Intense burning and itching started so I thought maybe it was a yeast infection. Well I used some over-the-counter yeast medication and it did not work. So then I used a different kind and it still didn't work. Then I decided to go back my doctor so they could test me for a yeast infection and the results came back negative. Also, I noticed frequent urgency to urinate and when I felt I had to urinate and did, nothing would come out, also it burned soooo bad. So I had them do a Bladder infection test too which also came back negative! Now I didn't know what to do so I just kept going back to my doctor and ended up seeing every doctor in that building because no one doctor could figure out what was wrong with me. After several tests for yeast, bladder infection, and STD's they still couldn't find anything because all the tests were negative, except one test came back equivical (meaning a negative or positive result) for genital herpes. Now I never had any symptoms of that disease and I told my doctor that, so we did the test again and it came back negative. But what was the reason for the equivical result? could there possibly be a unknown virus or bacteria that is related to the herpes disease that could of caused the test error and could be the cause of vulvodynia but shows no visible symptoms? I'm not sure but I thought that that was kind of strange. I have been put on anti-depressants, used different creams like cortisteroids and lidocaine, taken baths in baking soda and sea salts, AND NOTHING WORKS! I have visited these doctors so many times, literally crying in their office. I have also been at the emergency room 3 times and all they did was send me home with nothing!!!! Finally I forced my doctor to do a biopsy. They had found chronic inflammation but don't know the reason for it, so they gave me a cortisteriod cream. That didn't help any, I think it made it worse. On my last doctor visit which was recently, I saw this one doctor in the same building who understood this a little more. She put me on Paxil- an antidepressant, cipro-an antibiotic, and told me to get calcium citrate. Well I've been taking these things for almost 2 weeks now and the only thing that's better is that it doesn't really burn when I urinate. Now I don't know whether that it due to the antibiotic or the calcium citrate but something helped. But I still have the constant burning pain feeling on the inside and outside. The doctor also noticed that this pain is also localized in one area when pushed on with a cu-tip it's near my Bartholin's Glands. So I also asked her to test me for ureaplasma which may be secreting from my Bartholin's Glands. I haven't had that test done yet but I'm hoping for positive results because that can be cured with a special antibiotic. If that comes back negative, I don't know what I'm gonna do but I know something is going to be done! Maybe first going to the Cleveland Clinic, or a specialist, and after that consider surgery. The burning pain is sooooo bad that I cannot have sex and I had to drop out of college. This is a very serious thing that HAS TO BE RESEARCHED MORE!!!!!!! IT ISN'T FAIR TO US AND TO OUR FAMILY THAT WE SHOULD HAVE TO DEAL WITH THIS! THIS IS REDICULOUS! EVERY WOMAN GOING THROUGH THIS, I PRAY FOR YOU AND I WILL KEEP FIGHTING FOR US SOMEHOW!!! I THINK THE PRESIDENT SHOULD BE NOTIFIED OF THIS. THE GOVERNMENT SHOULD BE FUNDING THE MONEY FOR RESEARCH. JUST BECAUSE THIS ISN'T FATAL DOESN'T MAKE IT LESS SERIOUS. WE NEED A CURE AND WE NEED IT NOW!!!!!!!!!!!! I haven't been suffering from this for too long but for the women suffering from this for years-IT ISN'T RIGHT. I couldn't imagine having this for that long. There will one day be an answer and a possibly a cure and I am going to do everthing I can to get it!!!!!!!!!!!!
CommentTo all who suffer, I read your comments and see myself in many of them. I originally was diagnosed with yeast overgrowth, and the treatments for that have helped me to improve (very slowly). I have been dealing with this on a daily basis for over 2 years.... some days better than others. I feel my symptoms are largely connected with my hormones. Because of my slow progress, and some severe setbacks, I was forced to look beyond the yeast problem. My new doctor has found a significant amount of Streptococous Group Beta to be present in my vagina and would like to treat it with antibitics. This scares me because of the yeast that I may still be fighting. Antibiotics are known to destroy good and bad bacteria thus allowing yeast to flourish. My question to you on this message board is has anyone been treated for Streptacocous Group Beta and what were the results. Thanks in advance for any info you can share.
CommentHello fellow VVS sufferers... I too have VVS, I was diagnosed two years ago after I suddenly started experiencing pain with intercourse. I had recently taken an antibiotic for a cold and I first thought it was a yeast infection, then I thought it was a bacterial infection, then I had no idea. I live in a small town, but my doc is very good and knew exactly what I had. We first tried antibiotics with topical cortisone creme, this did nothing. Then we tried the injections which were extremely painful and yielded no results. The next step, he said, was surgery, but I don't want to go that far yet. I just limit my sexual activity and pray for a cure. Oh yah, I read that young, fair skinned (red haired especially) women who have taken accutane and have HPV have VVS in common, what do you guys think???? Hopin' for a miracle, Lisa P.S. Dr. Glazer... I think you should do an update letter on your resent findings and readings, I haven't heard any new news yet, thanks.
CommentHi everyone, my name is Jessica and I am 31 years old. I have been reading the vulvodynia guestbook for about a year now and thought that maybe It was my turn to contribute. I can't say that I have any miracule cure for our condition but I thought that maybe just by contributing it would help everyone know that they are not alone. I have been suffering with what the doctors call vulvodynia for almost two years now. I cannot say what may have been the initial cause of my condition. All I know is that one day I felt extreme burning in the vaginal area and I haven't been right since. A the present time I am on 25 mgs of Elavil. I have gone up as high a 75 mgs but I really hate the side effects (constipation, bloating, dry mouth etc.) I only take the 25 mgs because I think that it really does help take the edge off although it certainly isn't a cure. I have been to five gyno's I have hade 3 biopsies (came back positive for HPV although I have never had any symptoms). When I was first diagnosed with the HPV I was crushed. I thought how could this be happening to me. Now a year later I don't care what they call it just give it a name and give me a pill. I'M OVER IT. I think I have enough creams in my medicine cabinet to open up my own drugstore. At the beginning the pain and burning was mostly located on the outside of the vagina. But now I can pretty safely say that It not only burns on the outside but has seemed to have moved inside. I can definately feel a worsening in the pain the week before my period (the week during my period isn't as bad but the pain is always there.) At the present time my guy and I have sex about once a week. The sex itself is not painful but I sure pay for it for two or three days afterwords. My boyfriend and I have been together for four years now so he got a chance to know me before this ordeal. Thank god for that because I am certainly not the same person I was four years ago.The doctor that I am seeing presently doesn't have a clue. He's willing to work with me although he does not want to do any type of surgery and I have to say that any type of surgery would be a last resort for me also. I have a fear of making it worse than It already is. Personally I think that there is some type of virus out there that noone has found yet. I have also tried acupuncture with no luck. At the beginning I thought that it may be helping but after twelve visits at $60.00 a pop I decided that it wasn't for me. Well ladies I'm signing off for now thanks for listening. If I find out anything new I'll be sure and post it and please all of you do the same. P.S. I know that this condition is causing us all extreme stress but at the same time the stress is making us all feel worse. Try to take care of yourselves. Good luck to all of you. Jessie
CommentI am 23 years old and have been suffering from VVS for about three years. The pain started when I was about 5 months pregnant with my daughter. My doctor thought it would probably go away after she was born. I had a kidney stone during delivery and I had to have an episiotomy. I don't know if that had anything to do with it, but sometimes I wonder if I have nerve damage from the episiotomy. Six weeks after my daughter was born, I went in for my check-up and told my doctor that the pain was still there and I thought that maybe I hadn't healed completely. She told me to apply Premarin cream to the area and that it should get better soon. A few months later I realized that the pain wasn't any better; in fact, it was worse. My husband and I still were unable to have intercourse. She sent me to a specialist in Galveston, TX after she diagnosed me as having VVS. She said he had had success in treating patients with my disorder. Over the past 2 years I have tried countless creams that he prescribed. He also told me that there was a surgery that he had had success with. It's called vulvar "fulgeration". I have'nt heard of anyone else in the Guestbook that has had this surgery. It involves using an electric needle, to give what he calls the "trigger- points" of the pain, third-degree burns in order to kill the nerves that are hurting continuously. Thank goodness you're not awake during this! I have had this surgery twice. As a result of the first surgery I developed a granulation area that would not heal. So, when I had the second surgery to kill the nerves that were sill alive, he also had to remove the granulated area. I was given a couple of stiches and hoped that this would be the end of that problem. However, it still refused to heal until my regular doctor applied silver nitrate to the area once a week for about a month. While all of this was going on, I found this Guestbook and saw that some women had good results from taking Elavil. So, I asked the doctor if I could try that to see if would help. I still hadn't been able to have intercourse for about two years, but on top of that, I had pain just from walking, sitting, or just from wearing blue jeans. I have been taking Elavil for about 3 months now and it has definetly takin the edge off of the pain. For the most part, it doesn't hurt to sit or walk now. I have also used topical numbing gels, such as Lidocaine. About a month ago my husband and I were able to make love for the first time in about 2 and a half years. It hurt some, but was bearable at least. My pain is now centered in one spot that I think may be scar tissue from my granulation removals. I was wondering if anyone else out there has had the type of surgery I had. Also, if anyone has had painful scar tissue removed with good results. I am so happy to finally know that I am not alone in this problem, and that maybe someone will see what a big problem this is and fight to find a cure. I am very lucky to have a supporting husband and family, but I still have strong feelings of guilt as a result of this. My husband and I would like to have another child but I don't know if that will be possible. Well, this has turned out longer than I expected, so I will sign-off now.
CommentI am 39 years old and have been suffering from what I believe to be Vulvodynia for about 6 years now. It all started with a series of Yeast infections and bacterial infections which were treated and cleared up. However, then intercourse became very painful especially at the point of penetration and in an area near the bladder. A gynecologist I went to last year did a series of tests (Checked for HPV along with other things) and all came out negative. This has been very frustrating for both me and my husband as he is also afraid of causing me pain so we have been abstaining from sexual intercourse for quite a while - He also is very understanding so I am lucky in that respect. I am also amazed at how many others are stricken with this - I thought for a long long time that I was all alone with this and have been embarrassed and quite depressed about it. Anyway, glad that this site is available and hoping that a cure comes about for all of us that are affected by this ailment.
CommentHello! well it is going on 15 months now that i have had v.v., my story is not so unlike all the other stories, so i will just go to the important part. While my doctor was trying to cure my chronic yeast infection ( so he thought) for 4 months, he tried alot of medications. nothing helped and i was getting worse, so my DR. thought maybe i was not producing enoughf acid inside and gave me a water based jell with slight acidity. Name: Aci-Jel. I have been on Aci-jel for 10 months now. When i first started to use it i took a applicator full just befor i went to sleep, over the months it has been my only source of comfort. This jell has reduced the swelling to almost nothing 95% of the time.It has reduced that awfull discharge to about 80% the pain decreased when the swelling decreased, it allowed me to be intimate with my husband atleast once a week, and the pain was minimal or absent for a good 15 min. The burning is still there and the depression, but not quite as powerfull. This jell is not a cure for me, but it has allowed me to feel human more times than not. Over the months of constant use of the jell i have been able to reduce the application amount. First i went to a half application full and did that for about 7 months, slowly i started to feel even better and i got down to a quarter of the application, now i can go ever 3 days untill i need to apply a small amount of the jell. I still feel the v.v. all the time but the jell seems to keep it on a short leash. I also take vitamin c everyday and drink cranberry juice and take oatmeal baths along with watching my intake of Oxalates. I hope this information will help some of my fellow v.v. sisters. If it has helped me there is a chance it could help someone else. If anyone gives it a try please let me know if if the jell helps you, that would be so good to hear. Good luck and may PEACE fallow you.
CommentI've been a vulvodynia sufferer for about 4-5 years, and have tried many treatment options, including topical cortisone creams, estrogen creams inserted vaginally, and antidepressants (Zoloft, then Pamelor) for pain management. So far, nothing has worked for me. I mainly have vestibulitis (pain at the opening to the vagina), with occasional bouts of an extremely painful inflammation of the entire vulva. I've been seeing a specialist in the area, and through his examina- tions he has determined that I do not need biofeedback or surgery to remove my Bartholin's glands; however, since nothing else seems to help me, he is recommending a lasar surgury to my vestibule. I'm in no hurry to have this treatment done, especially since this same doctor is leaving my area within 2 months, and the surgury would have to be done more than once, with 4 months in between them! Has anyone else out there had this surgury? I need all the info I can get before making my decision. Please email me if you know anything about it, or if you have any suggestions. I've reached the point now where I'm seriously considering seeing an alternative doctor (herbalist or acupuncturist), because I'm so sick of these doctors trying to cure my symptoms without considering the actual CAUSE of these problems in women. I fear that if I have the lasar sur- gery, my vestibulitis may return at some point anyway. So, please help me if you can! I'd be very happy to share mutual experiences with anyone who would like to. Thanks! T.K. .Name:
CommentCan anyone recommend a counsselor in the Northern Virginia or DC area with experience with VVS or other chronic pain conditions? I have been suffering with VVS for 6 years and it has taken a toll on my sexual appetite and marriage.
CommentIf you have concerns or questions about relief for yeast infections, I have found something that has worked for me and for some other women I know. Please feel free to contact me for information.
CommentHi. I am 27, and I have been suffering from vulvodynia for about 5 years now. I went through about 4 doctors before I was diagnosed. I have had a wide range of symptoms, severe burning, soreness, inflamation, an almost bruised feeling, and sometimes a rash. I have been taking a drug called Triavil for about 3 years now, but I don't really think it is doing much for me. I suffer from depression, and what makes things worse is the fact that I am an avid horse person, and I own 2 horses that I just don't enjoy riding anymore, it is just killing me inside that this disease has destroyed the one thing I have always been so passionate about. I would like to hear from others with vulvar pain to talk about ways to cope with this horrible disease. I would also like to know about any treatments that have helped other women, my search for relief continues.
CommentI have been struggling with this problem for 3 months. My gyne really feels strongly that it is yeast related. Today she prescribe Diflucan 150mg tablets..1 today, another in 4 days and another 4 days later. Also nystatin/triamcinolone cream. I am hoping this will help...but I have my doubts as so many have gone the yeast route and failed. I will report back with the results. In the meantime, we must continue to research and learn from each other....chin up!!
CommentI have found a wonderful, understanding OB/GYN in the Salt Lake City area. His name is Dr. Howard Sharp, and I would recommend him wholeheartedly to anyone in the area looking for someone who is knowledgeable about vestibulitis. I have tried topical steroid creams, lidocaine, and treatments for yeast. So far nothing really works. The pain is worse some days than others, but I can't figure out what affects it. My question is, I am scheduled for a vestibulectomy in three weeks. My doctor tells me that this surgery has a 90% success rate. Has anyone out there had this procedure done? Has it helped? Any info would be greatly appreciated. I will do anything to be free from this condition, but I don't want to undergo any treatment that may make things worse. Please email me if you have any thoughts or advice on this. Thank you so much for this web site. It makes me feel more sane to know that other women are suffering from the same problem that other doctors told me was all in my head. Thank goodness for a wonderful, understanding husband and a great doctor. Thanks to everyone for their comments.
CommentI was surprised to find such an accurate depiction of the problem I suffered from. Especially since none of the health care providers I saw picked up on this. I saw at least 5 different providers in as many years, underwent laser surgery of my cervix and was referred for counseling (as it was assumed to be psychological). I did find some improvement in my condition after the birth of my first child; however, at the same time I had decided to try hypoallergenic toilet paper. I had additional relief with the birth of my second child. I am pleased to say that my episodes of pain have diminished greatly (only a few times a year versus every time I had sexual intercourse). I am interested in finding out more about the connection between the vulvodynia and pelvic floor abnormalities. There are some symptoms that my mother and her sisters share and some that I share with her sisters regarding pelvic floor problems in addition to neuromuscular disease that one of my aunts suffers from and that my mother and another aunt are experiencing symptoms of. I'll definitely keep an eye on your site. Thanks for the helpful information and service you are providing to women who have tried everything else and don't know where else to go.
CommentThank you for a wonderful website. Would you know of a gynecologist specializing in vulvar vestibulitis in the Toronto area? The last OBGYN I saw wanted to send me to a therapist..... I'm looking for a REAL answer. It's frustrating when your condition isn't taken seriously!
CommentFirst of all i would like to thank Dr H Glazer on this wonderful site. Well done doc. I to am a sufferer of vulvodynia/vulval vestibulitis.I began to have problems 5 months ago when i noticed a sting on my left labia (lip) when urinating. On doctors diagnosis i was told i had genital herpes YUK!! but further testing proved this diagnosis wrong. I was put on Zovirax for this so called herpes but only ended up with thrush as a result. This was when the burning and irritation started.So i was treated with Canesten with no success,the thrush persisted (i have never been a chronic thrush sufferer)before this i had only had thrush once before and that was when i was 17 i am now 31.I feel i only got the thrush this time because of the
CommentFirst of all i would like to thank Dr H Glazer on this wonderful site. Well done doc. I to am a sufferer of vulvodynia/vulval vestibulitis.I began to have problems 5 months ago when i noticed a sting on my left labia (lip) when urinating. On doctors diagnosis i was told i had genital herpes YUK!! but further testing proved this diagnosis wrong. I was put on Zovirax for this so called herpes but only ended up with thrush as a result. This was when the burning and irritation started.So i was treated with Canesten with no success,the thrush persisted (i have never been a chronic thrush sufferer)before this i had only had thrush once before and that was when i was 17 i am now 31.I feel i only got the thrush this time because of the Zovirax but it still doesnt explain where this thing came from. I have had several bad falls over the years.I fell off a swing in mid air and landed straight on my back to the point where i winded myself when i was 11.I used to own horses and have had falls off them to.When i was 20 my ex fiance king hit me in the spine (real man) to the point where my legs went numb for a while. The reason i am saying all this is because i have never really suffered from thush or UTI and my specialist seems to think that my problem has resulted from a fall or a hit to the spine which has caused this problem (nerve damage) I do admit that my problem is mild compared to some women i have read about but the fact remains that i do have it and it probably affects me more mentally than physically. I experience mild burning and irritation in my vulval area most of the time. I am thankful that i do have a partner who understands but i would give anything to go back to how i was 6 months ago. I have tried a few things for relief but most have failed these include Triptanol (antidepressants) Vitamin A ointment which only made the burning worse.(do not try this one).I have had a bit of relief from using Aveeno (oatmeal) in the bath twice a day for 15 to 20 mins. I am going to see a vulvovaginal specialist tomorrow and i believe i may be put on the biofeedback program which i hear has been quite successful for some women. I think this involves doing exercises for the pelvic floor muscle to strengthen it Before i was officially diagnosed with this THING i must have gone to at least 8 different doctors only to be told that i may have thrush or some sort of infection which i knew this was not the case because i had been tested for all infections before. I had heard of this condition and i had to see a gyn o and when i asked him if he'd ever heard of Vulvodynia before he just looked at me and said "Whats that,i've never heard of it and its never come into my practice and this is a gynaecologist.I felt like a real fool but i was finally sent to a dermotologist who diagnosed me with this THING.I walked out of her office feeling at least relieved that i DID have something wrong and it wasnt just all in my head like alot of doctors made me feel. Anyway i would like to talk to anyone experiencing this problem and let me know about some of the treatments you have tried as i am open to just about anything once. I'm not saying they will work for me but i sure am willing to try. All the best ladies and hang in there because i like to believe that a cure will be found.I think this is what keeps me going HOPE!!
CommentHas anyone been treated for vulvodynia with nuerontin or cromolyn? My doctor just put me on this because the citrate and diet were not showing any improvement. Please E-mail me with any information you have about these medications.
CommentDear fellow sufferers of vulvar vestibulitis, This is the third or fourth time I have posted. I suffer from pure vulvar vestibulitis- pain only upon touch to the bartholin gland area. I want to report that I did have a vestibulectomy with vaginal advancement almost four weeks ago. I am still in the healing stage of recovery and my stitches are starting to come out and dissolve. It is still a matter of time until I will know if the surgery was successful. I try not to think about the 10% chance it will not be. If anyone wants to email me about it, feel free. Good luck and best wishes to you all! Kristen
CommentShelly, You refer to thrush several times. Although vaginal cultures are not showing yeast, it may be possible that you have an overgrowth. Find a Dr. of integrative medicine and get yourself tested for yeast overgrowth. I have been suffering for about 2 yrs. now. Vaginal cultures come back negative, but stool samples show yeast overgrowth. You also might try cutting back on sugar in your diet, and see if this helps. An anti-yeast diet consists of no yeast products, no sugar, no white flour products, no dairy, and nothing fermented (including vinegar). Hope this opens a new door for you. Good Luck!
CommentI am a sufferer of vulvadynia, interstitial cysititis, and irritable bowel syndrome. I have had a full surgical hysterectomy and removed gall bladder. I have been searching for medical help, answers, treatment, etc. I suffer 24 hours a day and I would like some advice from Dr. Glazer. Thank you!
CommentHello. I have suffered with vulvadynia for appx. 4 years.I have also been diagnosed with endometriosis. I'm 23 years old and have let this condition destroy my life and my marriage. My husband has been very patient, but he feels that I have given up. I guess I have just been pretending it would just go away, or maybe it really is "in my head". I have been to a number of doctors and ended up self-diagnosing vulvadynia since discovering the nva a couple of years ago. I have been frozen, burned, biopsied, and everything else. Only recently have I heard a doctor utter the word vulvadynia in reference to me. It is such a relief to know that I am not alone. I would love to find a support group in the D/FW area if anyone knows of anything. My marriage is hanging on by a thread because our sex life is nonexistent. My husband is so afraid of hurting me that he has no desire to even touch me in an intimate way. If anyone can help me please e-mail me at katy.fenley@gte.net
CommentHi everyone. I had surgery in late August to treat vulvar vestibulitis. It is still too soon to tell if my surgery was successful. I had a perineoplasty. I'm feeling pretty good these days but I am still on the "mend". If anyone would like any information on the surgery, etc. please feel free to e-mail me @ckelly@datachan.com.
CommentI liked the depth of information on your site. I have been treated with no success so far for vulvodyna and am interested in being informed on new and successful treatments and suggestions for my condition.
CommentI am 25 and have been suffering with burning during and after intercourse for 5 1/2 years. Prior to this horrible experience I had a miscarriage and along with that, I suffered major problems with my family, which caused me even greater pain. After the miscarriage I began noticing this burning after intercourse. At first I thought it was nothing to worry about until it started to get worse and worse over time. Sometimes the pain could last for several hours. Doctors would tell me many of the same things that I have read about in this website. Things such as, they believed it was a mental problem because of the family problems I suffered and the miscarriage, it was thought to be a vaginal infection among many others that I can't remember at this time. I have spent the past 5 1/2 years thinking I have done something wrong and wondering when the day would come that my husband would not want me anymore. I have no interest in sex anymore because I can't stand the pain. I thank God that I have married somebody so wonderful who has stood by me through all of this. I have never been officially diagnosed with vulvodynia, but after reading up on it, I know for a fact this is what I have been suffering. Everything I read is exactly everything I have felt and have gone through. I am going to try the low oxalate diet and I would like to find out more information about biofeedback. For the first time I have hope that this will end someday. I am so happy that I found this website, because for the first time I don't feel alone. I live in Tampa, FL and would love to hear from anyone in the area who I could talk with. I joined the National Vulvodynia Association (301)299-0775 and hope they can help me out. This website is great and I look forward to reading all the messages.
CommentI am 46 years old and have suffered with vaginismus and pain upon intercourse all my life. I am a DES daughter with signigicant structual abnormalities of the uterus which resulted in an inability to carry a pregnancy to term. Despite seeing many ob/gyns all my life I was just recently diagnosed as having a vagina that is fused at the top and the bottom, making the opening very small.This structual abnormality I am told is consistent with the structural abnormality of my uterus. All caused probably my the DES exposure in utero. Although I always thought my pain was psychological I now find out it is physical. If anyone out there is a DES daughter who has a similiar diagnosis of structural abnormalities of the vagina please contact me. Thanks.
CommentGirls, let's get smart here. Start keeping a daily log so we can try to figure this out together. List all foods and beverages ingested. Continue with your anti-deps. Also, keep a chart of the pain. Mine seems to worsen right before and after my period. By doing this, hopefully we can figure out of it's dietary, hormonal-related, neurological, dermological, whatever. Report back January 1, 1999. I refuse to begin the millenium with this disease, so I'll definitely report my results. Word of advice: Do not use steroid creams, as this will worsen the problem. By all accounts, believe it or not, the skin of patients with this disease appears to be normal. Using steroids on seemingly healthy skin is bad news. I recently had interferon injections, which CURED the vaginal pain. Now I'm working on the pain in & around the urethra area. No, I do not have a urinary track infection or any related disorder. I have been tested for everything by a urologist. I know it's the same pain I felt vaginally, because that's not a pain you forget. It makes sense that it feels the same but in a different area, because the skin in the vagina & the urethra is virtually the same. I'm going back to my doctor to see if interferon injections in this area is an option. If he agrees and it works, I think it's safe to assume that MY pain was caused by a virus. My theory is that this disease has several different causes. After all, the direct translation of the name "vuladynia" simply means "vulva pain." Perhaps some of these tips will help ALLERGIC / DERMOLOGICAL: Use only Northern FREE toilet paper which contains no dyes, perfumes, etc. Use natural tampons. Do not use soap -- rinse area with plain water. Do not use an feminine deoderant. Take an antihystamine. Follow the low-oxylate diet. Chill out & see what happens after 6 weeks. If still suffering, move to NEUROLOGICAL: take tri anti-deps (you may have to try several different kinds -- insist on it) or anticonvulsants for a minimum of 3 months per med. Get your butt in a good biofeedback program, such as Dr. Glazer's. Best of luck and don't forget to report back January 1.
CommentTo JESSIE STEPP: If you have HPV, get Interferon Injections. You have a 90% chance of being pain free. Good luck!
CommentTo JESSIE STEPP: If you have HPV, get Interferon Injections. You have a 90% chance of being pain free. Good luck!
CommentI have written before and wanted to give a update which may help some of you still currently in pain. I am going on 3 years with this problem. I had my urine tested by Dr. Solomon and had high oxylates and I saw Dr. John Willems for my diagnosis of vulvar vestibulitis. I followed the diet and took calcium citrate religiously for over 2 years. I can honestly report that I did not get significant relief and in June, I removed myself from the regime. I noticed pain relief when I went off the calcium citrate and diet. I have been seeing a physical therapist for over a year and a half and I just recently started using ULTRASOUND in the vulvar area. IT IS HELPING ME!!!!!!!I actually feel pain relief. I am one of the unfortunate women who have vulvar burning constantly. The ultrasound works by helping the MAST CELLS and with INFLAMATION. Is there anyone out there using it? I recently contacted Dr. Glazer about it and he responded saying he was not aware of its use. I am not cured. But it helps the pain and It doesnt hurt. Just think, a nonenvasive procedure??? If you want more information on it, please feel free to e-mail me. Before I go, I wanted to remind you of a few things regarding treatment. What works for one, may not for the other. I have tried acupuncture for one year. No major relief. The anti-convulsants also did not help me. I have tried every known cream on the market, a dozen antibiotics, antifungals, anti-yeasts and antidepressants. Elavil made me gain weight so I switched to its sister drug Pamelor, but it didn't help that much. Since there is not a clear, definitive reason for the cause of vulvodynia but alot of speculation, there is not one clear treatment plan either. Get a good clinician. One that believes you and cares for your problem. Then, live each day, minute by minute and start a diary or journal and document your pain. Write down what gives you relief. ICE or HOT BATHS. Get educated. Not only do we have this outlet, but there are 2 associations, the NVA and VULVAR PAIN FOUNDATION. I urge you to join one or both. Find a support group in your respective areas or start one on your own. Bottom line is this. THERE IS NO KNOWN CURE!!!And I hate writing that down because I have this too. I have had the painful biopsies, nerve blocks, ureathral catherizations, and all the horrible side effects of the countless medications I have tried. If, by you reading this, you can extract something valuable and avoid painful, unnessesary procedures, then you are ahead of the game. Take our experience and learn from it. Together we will find an answer to this pain. Slowly, this disorder/disease is getting attention. But it takes us, the sufferers to educate. You are not alone. Take heart. One day we will have our answers. God Bless and keep faith.
CommentI had posted my comments on the guest book months ago and have since changed my e-mail address, so I am trying to get back to everyone who has the old address and give them my new one , THANKS Robin Young
CommentI wanted to update my progress with vulvadynia. I have had this terrible disease for 3 years and have finally found success,Dr. Libby Edwards diagnosed me, and since I have found a Dr. who knows something about whats going on with the local discomfort. A nuerologist was the answer for me. I started out on 200mg of neurontin and I am now up to 300mg, 2 at 4 times per day. It has been over 6 months and I can honestly say I am 90% cured and on my way to a complete recovery. I have to beleive that or I would not want to be here with this terrible feeling. I don't know if everyone is different, but this is what has answered my prayers. You can e-mail me mmfan@conninc.com. Robin A. Young(age 34) mother,wife,daughter etc...
CommentI have been suffering from Vulvodynia since 1990 - actually it all began 1 month after my wedding. I cannot have intercourse with my husband due to constant burning pain and rawness I feel afterwards. I have been taking the antidepressant Amitripytlin since 1991 and it has helped me tremendously. Well at least vulvodynia doesn't torment me 24 hours a day, 7 days a week like it did for the year and a half before I was diagnosed. I can say that with the help of God, a wonderfully loving, supporting and understanding husband and my family I have been able to live with Vulvodynia instead of being tormented by it. For those of you who have recently been diagnosed with Vulvodynia my prayers are with you. For vulvodynia sufferers all over the world I encourage you to keep the faith and live each day to the fullest. It is okay to be depressed on some days but don't let the depression overcome you. We all have to be strong and fight a good fight. There will be a cure one day. We just all have to believe and keep the faith! We are not alone - We have each other!
Commentthis site was recomended to me by my gnecologist. I have had a few major operations since 1994 for vulva cancer. when I went to see him recently we exchanged e-mail addresses and he mentioned getting into your web site. I have pain and soreness, even just sitting. He said the problem I have comes from previous surgery and vulvar disease. I have been looking for a support group for vulva cancer over the net and can't find any. I don't know of any outside the net either. any advice you can give would be much appreciated. Pat
CommentI am a 31 year old mother of 2 just diagnosed with vulvur vestibulatis. I have been to various doctors over 2 years trying to find out what this is and how I can get treatment. I would very much like to get in touch with others with my same disorder, just to know that there is someone out there that is like me and understands what I go through and have been through the past 2 years. Many doctors diagnosed me with mental disorders and said that there was nothing physically wrong with me after running many tests. But I knew there was something physically wrong . Finally my ob doctor referred me to a specialist in the texas medical center, a researcher in vaginal disorders. Finally a name to this disorder. My doctor is Raymond Kaufman M.D. He suggested biofeedback therapy and pain management. Has anyone else ever had this treatment and has it helped? Please e-mail me at johnm@lcc.net.
CommentKatie, You said that you were diagnosed with vestibulitis about a year ago and that you had a vestibulectomy done by a Dr. Godofredo in St. Louis and now your normal. I was just wondering if you had the burning feeling constantly or did you just have pain when the vestibular area was touched? My doctor thinks I should have a vestibulectomy but I would like to know what your symptoms were before I even consider it. Hope you recieve this message. Sincerely, Kiernan
CommentCan anyone recommend a doctor (preferrably female) in the Boca Raton/Coconut Creek/Ft. Lauderdale area of South Florida who specializes in or is even familiar with vulvodynia. I am really getting tired of the ignorance of the current doctor I am seeing. His answer is to up the Elavil. I'm sorry but I don't feel that the answer is to numb myself. I do not expect to be "cured" overnight. I just want someone that will work with me not look at me as though I am just someone to pity. Also, is there anyone who has tried a Homeopathic doctor? I am seriously considering it. I figure at this point what do I have to loose? Any info would be greatly appreciated. Thanks Jessie P.S. Thanks for letting me vent I'm having an extra painful week.
CommentI have suffered now for ten years. was diagnosed withinterstitial cystitis at stanford last year. My symtoms have progressively worstened. Vulvadynia now seems accentuated. Your info is very interesting as no one else seems to understand.
CommentHi everyone, I just wanted to let all of you newly diagnosed ladies to know that there is a very informative article in the Fall 1998 NVA newsletter. It is written by Dr. Borenstein and he discusses the various treatment options available. If I remember correctly the NVA costs about $35 to join, but it is money worth spending.
CommentHi, I am a vulvar vestibulitis sufferer from Cambridge. England I have had the condition for seven years now. My consultant is Chris sonnex from Addenbrooks at Cambridge, where we have also formed a self help group called the focus group. We would be glad of any information you can send us. Thanks. It's wonderful to know that someoneelse out threre is working on it
CommentVery useful information however how can I find help where I live. Need more info on doctors who know about this disease. Just this week diagnoised and very depressed about the unknown factors of this. I live in Louisville, KY area. Please help!
Commenti'd love to hear from anyone! i'm doing better but not quite there yet
CommentHEY GIRLS. I'M GLAD I FOUND THIS WEB SITE. MY STORY IS NOT MUCH DIFFERENT THAN ANY OF YOURS. I JUST WANT TO WARN EVERYONE NOT TO JUMP INTO HAVING SURGERY. I HAVE HAD VULVODYNIA FOR OVER 2 YEARS NOW. I AM 21. IT IS DESTROYING MY LIFE. I HAVE BEEN ON EVERY MEDICATION THAT I HAVE READ ABOUT ON THIS WEB SITE. I HAVE HPV THOUGH I DO NOT SHOW SYMPTOMS OF IT. I HAVE RECURRENT YEAST INFECTIONS. MY PAIN IS CONSTANT. IT STARTED OUT HURTING ONLY UPON TOUCH BUT AFTER THE SURGERY IT IS 10 TIMES WORSE. MY DOCTOR PROMISED I WOULD BE 50%-75% PAIN FREE AFTER THE SURGERY. WRONG. IF I WOULD HAVE KNOWN THEN WHAT I KNOW NOW. NOW I KNOW ONLY WOMEN WITH VULVAR VESTI. SHOULD HAVE THE SURGERY AND NOT WOMEN WITH VULVODYNIA. OH WELL. JUST THINK IT OVER A LOT BEFORE YOU DO IT. I WENT THROUGH HELL ONLY TO GET WORSE. CURRENTLY I AM TAKING NIZORAL FOR 3 MONTHS. IT IS AN ANTI-FUNGAL. MY VULVODYNIA STARTED AFTER GOING ON THE PILL AND TAKING ANTIBOTICS. MAYBE IT IS ALL CAUSED BY THE YEAST. IN MY OPINION IT HAS TO BE THAT OR CAUSED BY HPV. I AM SO FRUSTRATED. MY BOYFRIED HAS STUCK BY ME THE WHOLE TIME. WE HAVE NOT BEEN ABLE TO HAVE SEX IN A YEAR AND A HALF. THE PAIN IS UNBEARABLE. ANYWAY HANG IN THERE EVERYONE. THANKS DR. GLAZER FOR THE SITE.
CommentDecember 3/98 I have sufferred with vulvodynia for about 6 years -- it is the most difficult thing that I have had to deal with in my life. I also suffer a great deal from anal burning -- especially when I have a bowel movement. Does anyone else have this problem? How do you find relief?? Any help, would be greatly appreciated. Thanks for taking the time to read this note. Bye for now. Laurie Clark
CommentThis message is in response to Suzanne who posted to the website on 12/1/98. Suzanne, I noticed that you did not post an e-mail address so I assume that you do not have one. I just wanted to let you know that my case is very similar to yours. I am 31 years old and I too have been suffering from vulvodynia for a little over two years. I also was diagnosed with HPV although I have no symptoms. I asked my doctor to allow me to try Nizoral which I started taking on 12/1. I read about a woman by the name of Robyn who had much success with this medication although I feel a little nervous about a medication which can cause damage to your liver. It sure is something we need to keep a close eye on. How long have you been taking the Nizoral and have you noticed a difference? Well if you have access to a computer and would like to talk with someone who understands. Feel free to e-mail me. P.S. I live in South Florida and am also fortunate enough to have a boyfried who has been very supportive and the best friend that anyone could ever ask for. Best of luck to you. Stephanie
CommentI'm 24 and was diagnosed with vulvodynia/vestibulitis in June by my very wonderful gynecologist. I am thankful that he recognized it so quickly, especially given the many horror stories I have read here about women who've gone to many doctors for several years and been accused of it "being in their head." While my gynecologist does not specialize in or treat vulvodynia, he has been a great source of information, as well as being able to help me reason through my options. I have seen a woman who specializes in this problem, but thus far all she has done is put me on Elavil. For the last three months I have been taking it, but I have to be honest, it really hasn't helped. She started me at 50mg and eventually pushed me up to 150mg, which I have heard is a massive amount to be taking. Does anyone have any knowledge about this? Also--has anyone who has taken it noticed a side effect of involuntary twitching in your leg muscles? Please email me if you have. Anyway. I am going to visit a urogynecologist in this area in January. Hopefully something she can recommend will help. Does anyone know of any good/knowledgeable/helpful doctors in this area in the Chicagoland region? Please let me know, if so. Finally, I just want to say I am so thankful to have found this site, and know that I am not alone. As I read the stories of all of my fellow sufferers on this site, I see my own story in so many of them. I pray that one day we can all be cured.
CommentI was disagnosed with Vulvodynia three years ago and have been unable to find any doctor in the Cleveland, Ohio area who is knowledgeable about this condition. What is the Glazer Protocol mentioned? Can you prescribe any product or procedure that might help me or should I come to see you in New York? I am 77 years old and would appreciate any advice you can give me. Thank you for your reply. Frances Turner 32l2 Richmond Road Beachwood, OHio 44l22-4l77
CommentI have been suffering from Vulvar Vestibulitis for the past 7 years. I was diagnosed only two years ago and have experienced tremedous relief by taking Elavil and using topical creams. From my diagnosis, I have improved approxiamatley 85%. I have recently stopped taking Elavil because my husband and I are planning to start a family. In turn, I have started the low-oxalate diet along with daily doses of Citracal, hoping it will reduce some of the pain. I have been off the Elavil for about 5 weeks now and I am starting to experience some of the same discomfort I had 2 years ago. Does anyone have any suggestions on how to make this transition any easier? I am also looking for someone who has went through pregnancy while suffering from a related condition. What should I expect? Is it possible for the pain to go away, as it does for some endodymetriosis patients? My new year resolution is to take control of my condition. I am tired of being angry and asking "why me?" I believe the more I learn about the condition and its treatments, the better off I will be. I am looking for support groups and/or volunteer awareness groups to become involved in. It amazes me that many of the area doctors are not firmiliar with Vulvodynia. How can we make the medical community more aware? Make insurance companies pay for more treatments? What research is being conducted? Are there any new revelations? Any information anyone has would be very appreciated. I am looking forward to hearing from people I can relate too.
CommentHi fellow vulvodynia sufferers. This posting will not be as positive as my last one as this has not been a very good week for me. I have good wweks where I try to be as positive as possible and then I have weeks like this one where I don't do so well mentally or physically. I am feeling a little depressed today because of the rawness and irritation that is bothering me. My husband and I had intercourse last night (had to quit halfway through due to the pain) and I just feel soooo inadequate. I have a loving husband who is very understanding but I just cannot help to get discouraged sometimes. I have been suffering from this conditon for 8 long years (since 1 month after my wedding)and by now I would have hoped to have started a family. I really want to get pregnant and experience the joy of being a mother but all I can do now is cry envisioning what it would be like to engage in hours of lovemaking with my husband and to see the little "+" sign on a pregnancy test. It justs gets so frustrating and depressing sometimes. It can be overwhelming. I just wanted to express my self while crying knowing that others who read this know exactly how I feel and may even be crying with me. Thanks for letting me vent.
CommentGood website...please keep up the work on this syndrome!
CommentI don't have vulvodynia BUT my mother does! She is 73 and has always been a very healthy, active woman then this ugly itch came along. She tried all the creams and drugs that you have all mentioned in your articles. She was into a deep depression when her doctor recommended a local psycharist who told her that he could make her feel normal again. AND SHE IS! I won't say she's cured but she is a different woman now. She is now again mom as I have always known her. She does not have the internet and therefore she asked that I post the pills that she has found that have made her feel human again. She has complete sympathy with all sufferers out there, because she was also at a point where she would have done anything for a day of relief and now she is in reverse where she only has the odd day of pain. The drugs (pills) that she takes are: NEURONTIN - 300mg - 2 pills before bed. Also, ASENDIN - 50mg - 1 pill at bedtime and PAXEL - 30mg once a day. In addition to these, she takes a weekly vitamin intravenous which is composed of the 3 B vitamims, B2,B6 and B12, Magnesium 4 and Vitamin C. She has told me that she only hopes that this information can help somebody out there because she has been there and she wants to share her results with all sufferers and maybe her information can make someone's life better. If you would care to e-mail me, feel free, as mother is as close as the phone and I will pass on any and all information and requests to her. Thanks for reading and I hope that we help someone in the process.
CommentJust me again, noticed that I posted my e-mail address wrong. This one is correct. Thanks
CommentHi everyone, I haven't been diagnosed with vulvodynia but I am almost positive this is what I have. I am 20 years old and have had these symptoms for two years but no doctor has been able to diagnose me with anything.
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