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CommentHello, I just stumbled onto vulvar vestibulitis information in a health magazine and figuredthat this must be what I have. No doctor has been able to tell me why I have pain at theopening of the vagina. I am now 27 - it all started when I got married 4 years ago andstarted having intercourse. Before this I just suffered with cronic bladder infections. Itwas very painful during intercourse. I thought that pain would last about a month or twobut it is now years later. I just had my second child and never had an episiotomy. I waswondering if that surgery would help stop the pain during intercourse. Does anyone haveany ideas? It is affecting my relationship with my husband and I am just not interested inintamacy 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 myperiod). After seeing a countless number of doctors I was finally diagnosed with vulvarvestibulitis. I have tried a plethora of different treatment options, but so far they havebeen of little or no help. For example, I've tried anti-fungals (e.g. Diflucan), topicalestrogen, steroids, E-vitamin, and tricyclic antidepressants (which made me both dizzy andtired). In addition, I have stopped taking my birth control pills (I really haven't hadany use for them in the past few years, anyway...) and I have tried to avoid high-oxalatefood. However, the pain persists... Since nothing else seems to help I am now considering having a vestibulectomy. I haveheard that the success rates have been reported to be very high, although many obviouslystill remain skeptical. It would be really nice to hear from people who have been througha vestibulectomy (both positive and negative experiences), please e-mail me if you'rewilling to share your thoughts on the subject. It would also be nice to hear from other vulvodynia patients in Scandinavia (or therest of Europe), I can hardly be the only one outside the US who is suffering from thisdevastating disease! I think that this guest book is a great idea, thank you very much Dr. Glazer. Thevulvodynialist is also an excellent idea, I've already decided to join it. Finally, Iwould 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 allof the aspects of the old site which you have come to value combined with a more userfriendly and easy to access organization of the information. I thank you all for coming tothe 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 havingsymptoms 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 slowlygot worse. I went from doctor to doctor until I finally found a Nurse Practitioner whodeals with vulvar pain. She has me on Diflucan once a week for the first month then onceevery two weeks for the next month then once a month for a month. Hopefully after that Iwill be able to get off of it. I am also having to do regular muscle exercises of thevaginal area. It is very difficult. After 5 or 6 of them, I am very tired. If there is anything 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 bowelsyndrome, and I am getting very depressed. Does the diet thing really work and also doestaking calcium citrate really work? Well, I am going to read the rest of the info from theother guest books to see if anyone else can help me understand some of this. Thank you fortaking the time to help with this awful disease.
CommentWhat can be done for a patient with CFIDS who cannot take antihistamines because ofSjogren's Syndrome. I have already tried Tegretol which caused a SUBSTANSTIAL drop in mywhite 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 for3 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 COULDFORWARD 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 afterdiagnosis. After researching the internet, I'm sure I have vulvodynia. I am veryinterested and encouraged by your non-invasive and pretty successful treatment. I want tolearn all I can before my appointment at UCLA.
CommentMy mother is suffering horribly and I'm trying to understand the disease and findoptions for her. We live in the Bay Area.
CommentI am looking for a support group in Maine and find all the groups I have investigatedon 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 havenever heard or dealt with it. I am on my third doctor that has finally told me what iswrong. He told me to become an expert on this problem and to see what is available and wewould try the treatment. I am trying to see what most of us have in common. Is thereanyone 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'tbelieve such a condition actually existed or that so many other woman have it. I have beento the doctor several times, suspecting yeast or bacterial infections. Each time the testshave 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 productsI was using. During my last checkup (I'm due again next month) I was told if the problemcontinued, 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. Iexperience pain during intercourse, almost all the time. The pain is worse during theinitial pentration. Sometimes its unbearble. Fortunately, I have a very understandinghusband. I can actually pinpoint the exact spot, right inside the vagina, where it hurtsthe most. I also experience burning & itching of the area right around the vagina. Ican go for days, sometimes weeks, with no symptoms, then suddenly it starts up again. Upuntil this point, I have only been using hydrocortisone creams. It seems to help, but onlytemporarily. I would appreciate any information I could share with my doctor. If this iswhat I have, I would be willing to do or try anything to relieve it. Thank you for anyhelp you can give me. Diane
CommentThank you Dr. Glazer for setting up this website! I hope many women discover it andlearn 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 thecondition (after about a year of wrong diagnoses and frustration). I still am not painfree but am much better using calcium citrate, a low oxalate diet, amd biofeedback. Ibelieve the diet really helps. My life has been changed by constant burning pain, but I amhappy 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 theusual 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 otherautoammune problems including unexplained joint pain/swelling, chronic fatigue/sleepdisturbance, and irritable bowel syndrome- like symptoms, lymph gland swelling that do notfollow a pattern. Nobody else here has mentioned possible links to thyroid disease. I'dlike to know if this has ever been linked? I have only had vulvular symptoms for 6-7months, but other symptoms have plagued for much longer. My loss of interest in sexoccurred 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 thewide variety of symptoms linked to the disorder. Thanks to this site, I think I've helpedmy 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 througha year of cultures, tests and finally this week found this information and realize this iswhat I have. I would like to find a new doctor in the Baltimore area. If anyone has hadany luck finding one that deals with vulvodynia, please email me with their information. Iam desperate to get this taken care of. My husband has been the best, but I can't takethis pain anymore!
CommentDr. Glazer, I have been suffering from an undiagnosed condition for over 12 years now. When Istumbled upon the vulvadynia website I felt like God had directed me here. I have been tocountless doctors, been told my problems were "all in my head", that thechlorine content in my well water was the problem, etc. From what I am reading, most ofyou are familiar with the merry-go-round I have been on. I have been trying the topicalestrogen cream for about a month now and have been pleased with the almost immediaterelief I experienced. But the past week I have been dealing with an extreme amount ofitching, some burning and just touch tenderness. Is this a common side effect from the useof the estrogen cream? Is there something else I need to be doing in conjunction with thecream? 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. Numerousdoctors have examined me and haven't a clue as to what I have. They cannot find anythingwrong with me at all. I suffered from a lot of bladder infections in the past and have hadpainful intercourse for the last 3 years. It is greatly affecting my relationship with myboyfriend. There is a great deal of itching and stinging in the vulvor area. My doctor hasrequested for me to visit a counselor and gave me a topical sterroid to start off with. Ifthat does not work he wants to put me on an anti-depressant. He thinks that it is relatedto sexual abuse. It is affecting me mentally also. I sit and wonder what the future holdsfor my intimate life. What do you recommend me to do? Please help me find out if this isvulvodynia. Thank you kindly, Leis (Warren, MI 48089)
CommentMy current dr is recommending local steriod injections. Does anyone have experiencewith this? If so, I would really appreciate your feedback.
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. Ifanyone lives this way, please email me. Also, I have some news to share to the many womenout there who have suffered in silence for so long. First: Join the Vulvar Pain Foundationin 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: Getyourself 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 tolocate them. Third: read, read, read. Make yourself find as much as you can on yourdisorder and educate family, friends and God forbid your own doctor. And last, get ajournal 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 moreyou 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 whatworks for you may not for me. I had the oxalate testing and I have high oxalates. I havebeen on the diet strictly for over 2 years with the calcium citrate. I have not seendramactic improvements and when I stopped taking the calcium, my pain reduced. This doesntmean everyone should stop, just give yourself alot of time before you quit. The estrogencream 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, butgained 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 usecoleman freezer packs and put them in a pillowcase so I dont expose my skin to the ice. Itried the Instant Ocean, which you can find in most pet stores. It is sea salt and I foundsome pain relief. Lastly and more exciting, I am doing physical therapy (almost 2 yearsnow) and we are trying a new technique. ULTRASOUND. I am seeing DRAMATIC pain relief. Itis not permanent, but I have been in pain on a scale of 7-8 and left a 1-2. Honest. Ithelps with the MAST cells and inflammation. It is non-evasive and does not HURT!!!!!! Itis not a cure, but it is working for me. Boy this is long, but I wanted to offer someinsight into what has helped me. Is anyone trying this and does it help you. Please e-mailif 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 allthe visitors are finding the new version of the vulvodynia.com website informative anduser 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 avestibulectomy performed by Dr. Godofredo Herzog in May. I am happy to report that I amwell, happy, and NORMAL. He is not on the reference list but he has an office on GrahamRoad 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 thesymptoms that I have are in direct corrolation with that of vulvadynia. I am in desperateneed 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 amseeing a wonderful OB/GYN who has no knowledege of our painful condition. I am veryfrustrated and feel as though I am not getting the answers that I would like to have. Ihave the most wonderful and patient husband any woman could ask for, however I dislike thefact that we are unable to have sex on more of a regular basis. We are lucky to have it1-2 times a month, if even that. My doctor has me going to the physical therapist and willeventually send me to a pain mgmt. clinic. Do these things help any of you? I have seenthe physical therapist approx. 30 times in the past 3 months, and I have had no lastingrelief. How about surgery? What types of surgey are there to help allieviate some of thispain and discomfort? Please e-mail me with any answers you may have. I pray for every oneof 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 beenpainful. I'm single so I just have been avoiding relationships. Now I've been datingsomeone for three months and finally went back to the doctor again thinking something mustbe wrong. She gave me a topical gel to numb the area and suggested antidepressants if thatdoesn't work. Does anyone else use topical gels? Seems like it just stops the pain duringintercourse but I often still feel sore after.
CommentI am 30 yrs old and after 2 months of burning hell and 4 doctors, I was finallydiagnosed 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 treatedwith Diflucan, Metrogel, Cleosin, Metronidazole pills, and Terazol. Finally, I found agood doctor. She gave me Aristocort, which did wonders to reduce the pain of thevestibule. However, the burning continued. I also take 20 mg of Imipramine (ananti-depressant). I just got married in May and we have not had intercourse since July. Itis so depressing. He is very understanding, but I am still depressed. The thought of sexmakes me cringe with pain. For some reason, I seem to suffer less on the weekends. Myhusband thinks it is exacerbated by stress. Most days the burning is on the inside, butsometimes I burn on the outside. Some days I just have a raw, irrated, dry feeling. I havefelt better the last few days-don't know why. I have even been walking twice with noproblems. 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 enduringthis pain for YEARS that I have to take a XANAX just to get a grip. I have an appointmentwith a specialist (Dr. Fred Ingraham) in Jackson, MS on Nov. 2. I heard that he haspublished some things on VV, so he must know his stuff. Has anyone seen him? Also, I readabout an antifungal cream called ketoconazole--has this worked for anyone? The article Iread said that "Non wart vestibulitis can be cured" with this. That's a prettybold claim. Has anyone tried it? God bless all of us suffering from this horriblecondition.
CommentI am 30 yrs old and after 2 months of burning hell and 4 doctors, I was finallydiagnosed 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 treatedwith Diflucan, Metrogel, Cleosin, Metronidazole pills, and Terazol. Finally, I found agood doctor. She gave me Aristocort, which did wonders to reduce the pain of thevestibule. However, the burning continued. I also take 20 mg of Imipramine (ananti-depressant). I just got married in May and we have not had intercourse since July. Itis so depressing. He is very understanding, but I am still depressed. The thought of sexmakes me cringe with pain. For some reason, I seem to suffer less on the weekends. Myhusband thinks it is exacerbated by stress. Most days the burning is on the inside, butsometimes I burn on the outside. Some days I just have a raw, irrated, dry feeling. I havefelt better the last few days-don't know why. I have even been walking twice with noproblems. 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 enduringthis pain for YEARS that I have to take a XANAX just to get a grip. I have an appointmentwith a specialist (Dr. Fred Ingraham) in Jackson, MS on Nov. 2. I heard that he haspublished some things on VV, so he must know his stuff. Has anyone seen him? Also, I readabout an antifungal cream called ketoconazole--has this worked for anyone? The article Iread said that "Non wart vestibulitis can be cured" with this. That's a prettybold claim. Has anyone tried it? God bless all of us suffering from this horriblecondition.
CommentI am 19 yrs. old and have had vulvodynia or vulvar vestibulitis since May 28, 1998. InApril I was diagnosed with a vaginal infection called Bacterial Vaginosis and was treatedwith Cleocin. I do not know whether that could of brought this on some how but thishappened soon after I was finished with the medication. Intense burning and itchingstarted so I thought maybe it was a yeast infection. Well I used some over-the-counteryeast medication and it did not work. So then I used a different kind and it still didn'twork. Then I decided to go back my doctor so they could test me for a yeast infection andthe results came back negative. Also, I noticed frequent urgency to urinate and when Ifelt I had to urinate and did, nothing would come out, also it burned soooo bad. So I hadthem do a Bladder infection test too which also came back negative! Now I didn't know whatto do so I just kept going back to my doctor and ended up seeing every doctor in thatbuilding because no one doctor could figure out what was wrong with me. After severaltests for yeast, bladder infection, and STD's they still couldn't find anything becauseall the tests were negative, except one test came back equivical (meaning a negative orpositive result) for genital herpes. Now I never had any symptoms of that disease and Itold my doctor that, so we did the test again and it came back negative. But what was thereason for the equivical result? could there possibly be a unknown virus or bacteria thatis related to the herpes disease that could of caused the test error and could be thecause of vulvodynia but shows no visible symptoms? I'm not sure but I thought that thatwas kind of strange. I have been put on anti-depressants, used different creams likecortisteroids 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 alsobeen 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'tknow the reason for it, so they gave me a cortisteriod cream. That didn't help any, Ithink it made it worse. On my last doctor visit which was recently, I saw this one doctorin the same building who understood this a little more. She put me on Paxil- anantidepressant, cipro-an antibiotic, and told me to get calcium citrate. Well I've beentaking these things for almost 2 weeks now and the only thing that's better is that itdoesn't really burn when I urinate. Now I don't know whether that it due to the antibioticor the calcium citrate but something helped. But I still have the constant burning painfeeling on the inside and outside. The doctor also noticed that this pain is alsolocalized in one area when pushed on with a cu-tip it's near my Bartholin's Glands. So Ialso asked her to test me for ureaplasma which may be secreting from my Bartholin'sGlands. I haven't had that test done yet but I'm hoping for positive results because thatcan be cured with a special antibiotic. If that comes back negative, I don't know what I'mgonna do but I know something is going to be done! Maybe first going to the ClevelandClinic, or a specialist, and after that consider surgery. The burning pain is sooooo badthat I cannot have sex and I had to drop out of college. This is a very serious thing thatHAS TO BE RESEARCHED MORE!!!!!!! IT ISN'T FAIR TO US AND TO OUR FAMILY THAT WE SHOULD HAVETO DEAL WITH THIS! THIS IS REDICULOUS! EVERY WOMAN GOING THROUGH THIS, I PRAY FOR YOU ANDI 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 FATALDOESN'T MAKE IT LESS SERIOUS. WE NEED A CURE AND WE NEED IT NOW!!!!!!!!!!!! I haven't beensuffering from this for too long but for the women suffering from this for years-IT ISN'TRIGHT. I couldn't imagine having this for that long. There will one day be an answer and apossibly 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 withyeast overgrowth, and the treatments for that have helped me to improve (very slowly). Ihave been dealing with this on a daily basis for over 2 years.... some days better thanothers. I feel my symptoms are largely connected with my hormones. Because of my slowprogress, and some severe setbacks, I was forced to look beyond the yeast problem. My newdoctor has found a significant amount of Streptococous Group Beta to be present in myvagina and would like to treat it with antibitics. This scares me because of the yeastthat I may still be fighting. Antibiotics are known to destroy good and bad bacteria thusallowing yeast to flourish. My question to you on this message board is has anyone beentreated for Streptacocous Group Beta and what were the results. Thanks in advance for anyinfo you can share.
CommentHello fellow VVS sufferers... I too have VVS, I was diagnosed two years ago after Isuddenly started experiencing pain with intercourse. I had recently taken an antibioticfor a cold and I first thought it was a yeast infection, then I thought it was a bacterialinfection, then I had no idea. I live in a small town, but my doc is very good and knewexactly what I had. We first tried antibiotics with topical cortisone creme, this didnothing. 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 mysexual activity and pray for a cure. Oh yah, I read that young, fair skinned (red hairedespecially) women who have taken accutane and have HPV have VVS in common, what do youguys think???? Hopin' for a miracle, Lisa P.S. Dr. Glazer... I think you should do anupdate 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 thevulvodynia guestbook for about a year now and thought that maybe It was my turn tocontribute. I can't say that I have any miracule cure for our condition but I thought thatmaybe just by contributing it would help everyone know that they are not alone. I havebeen suffering with what the doctors call vulvodynia for almost two years now. I cannotsay what may have been the initial cause of my condition. All I know is that one day Ifelt extreme burning in the vaginal area and I haven't been right since. A the presenttime I am on 25 mgs of Elavil. I have gone up as high a 75 mgs but I really hate the sideeffects (constipation, bloating, dry mouth etc.) I only take the 25 mgs because I thinkthat it really does help take the edge off although it certainly isn't a cure. I have beento five gyno's I have hade 3 biopsies (came back positive for HPV although I have neverhad any symptoms). When I was first diagnosed with the HPV I was crushed. I thought howcould this be happening to me. Now a year later I don't care what they call it just giveit a name and give me a pill. I'M OVER IT. I think I have enough creams in my medicinecabinet to open up my own drugstore. At the beginning the pain and burning was mostlylocated on the outside of the vagina. But now I can pretty safely say that It not onlyburns on the outside but has seemed to have moved inside. I can definately feel aworsening in the pain the week before my period (the week during my period isn't as badbut the pain is always there.) At the present time my guy and I have sex about once aweek. The sex itself is not painful but I sure pay for it for two or three daysafterwords. My boyfriend and I have been together for four years now so he got a chance toknow me before this ordeal. Thank god for that because I am certainly not the same personI was four years ago.The doctor that I am seeing presently doesn't have a clue. He'swilling to work with me although he does not want to do any type of surgery and I have tosay that any type of surgery would be a last resort for me also. I have a fear of makingit worse than It already is. Personally I think that there is some type of virus out therethat noone has found yet. I have also tried acupuncture with no luck. At the beginning Ithought that it may be helping but after twelve visits at $60.00 a pop I decided that itwasn't for me. Well ladies I'm signing off for now thanks for listening. If I find outanything 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 timethe 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 painstarted when I was about 5 months pregnant with my daughter. My doctor thought it wouldprobably go away after she was born. I had a kidney stone during delivery and I had tohave an episiotomy. I don't know if that had anything to do with it, but sometimes Iwonder if I have nerve damage from the episiotomy. Six weeks after my daughter was born, Iwent in for my check-up and told my doctor that the pain was still there and I thoughtthat maybe I hadn't healed completely. She told me to apply Premarin cream to the area andthat it should get better soon. A few months later I realized that the pain wasn't anybetter; in fact, it was worse. My husband and I still were unable to have intercourse. Shesent me to a specialist in Galveston, TX after she diagnosed me as having VVS. She said hehad had success in treating patients with my disorder. Over the past 2 years I have triedcountless creams that he prescribed. He also told me that there was a surgery that he hadhad success with. It's called vulvar "fulgeration". I have'nt heard of anyoneelse in the Guestbook that has had this surgery. It involves using an electric needle, togive what he calls the "trigger- points" of the pain, third-degree burns inorder to kill the nerves that are hurting continuously. Thank goodness you're not awakeduring this! I have had this surgery twice. As a result of the first surgery I developed agranulation area that would not heal. So, when I had the second surgery to kill the nervesthat were sill alive, he also had to remove the granulated area. I was given a couple ofstiches and hoped that this would be the end of that problem. However, it still refused toheal until my regular doctor applied silver nitrate to the area once a week for about amonth. While all of this was going on, I found this Guestbook and saw that some women hadgood results from taking Elavil. So, I asked the doctor if I could try that to see ifwould help. I still hadn't been able to have intercourse for about two years, but on topof that, I had pain just from walking, sitting, or just from wearing blue jeans. I havebeen taking Elavil for about 3 months now and it has definetly takin the edge off of thepain. For the most part, it doesn't hurt to sit or walk now. I have also used topicalnumbing gels, such as Lidocaine. About a month ago my husband and I were able to make lovefor 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 granulationremovals. 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 tofinally know that I am not alone in this problem, and that maybe someone will see what abig problem this is and fight to find a cure. I am very lucky to have a supporting husbandand family, but I still have strong feelings of guilt as a result of this. My husband andI would like to have another child but I don't know if that will be possible. Well, thishas 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 forabout 6 years now. It all started with a series of Yeast infections and bacterialinfections which were treated and cleared up. However, then intercourse became verypainful especially at the point of penetration and in an area near the bladder. Agynecologist I went to last year did a series of tests (Checked for HPV along with otherthings) and all came out negative. This has been very frustrating for both me and myhusband as he is also afraid of causing me pain so we have been abstaining from sexualintercourse for quite a while - He also is very understanding so I am lucky in thatrespect. I am also amazed at how many others are stricken with this - I thought for a longlong time that I was all alone with this and have been embarrassed and quite depressedabout it. Anyway, glad that this site is available and hoping that a cure comes about forall 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 sounlike all the other stories, so i will just go to the important part. While my doctor wastrying to cure my chronic yeast infection ( so he thought) for 4 months, he tried alot ofmedications. nothing helped and i was getting worse, so my DR. thought maybe i was notproducing 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 aapplicator full just befor i went to sleep, over the months it has been my only source ofcomfort. This jell has reduced the swelling to almost nothing 95% of the time.It hasreduced 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 minimalor absent for a good 15 min. The burning is still there and the depression, but not quiteas powerfull. This jell is not a cure for me, but it has allowed me to feel human moretimes than not. Over the months of constant use of the jell i have been able to reduce theapplication amount. First i went to a half application full and did that for about 7months, slowly i started to feel even better and i got down to a quarter of theapplication, now i can go ever 3 days untill i need to apply a small amount of the jell. Istill feel the v.v. all the time but the jell seems to keep it on a short leash. I alsotake vitamin c everyday and drink cranberry juice and take oatmeal baths along withwatching 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 givesit a try please let me know if if the jell helps you, that would be so good to hear. Goodluck and may PEACE fallow you.
CommentI've been a vulvodynia sufferer for about 4-5 years, and have tried many treatmentoptions, including topical cortisone creams, estrogen creams inserted vaginally, andantidepressants (Zoloft, then Pamelor) for pain management. So far, nothing has worked forme. I mainly have vestibulitis (pain at the opening to the vagina), with occasional boutsof an extremely painful inflammation of the entire vulva. I've been seeing a specialist inthe area, and through his examina- tions he has determined that I do not need biofeedbackor 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 treatmentdone, especially since this same doctor is leaving my area within 2 months, and thesurgury would have to be done more than once, with 4 months in between them! Has anyoneelse 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'vereached 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 mysymptoms without considering the actual CAUSE of these problems in women. I fear that if Ihave the lasar sur- gery, my vestibulitis may return at some point anyway. So, please helpme if you can! I'd be very happy to share mutual experiences with anyone who would liketo. Thanks! T.K. .Name:
CommentCan anyone recommend a counsselor in the Northern Virginia or DC area with experiencewith VVS or other chronic pain conditions? I have been suffering with VVS for 6 years andit has taken a toll on my sexual appetite and marriage.
CommentIf you have concerns or questions about relief for yeast infections, I have foundsomething that has worked for me and for some other women I know. Please feel free tocontact me for information.
CommentHi. I am 27, and I have been suffering from vulvodynia for about 5 years now. I wentthrough 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. Ihave been taking a drug called Triavil for about 3 years now, but I don't really think itis doing much for me. I suffer from depression, and what makes things worse is the factthat 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 alwaysbeen so passionate about. I would like to hear from others with vulvar pain to talk aboutways to cope with this horrible disease. I would also like to know about any treatmentsthat have helped other women, my search for relief continues.
CommentI have been struggling with this problem for 3 months. My gyne really feels stronglythat it is yeast related. Today she prescribe Diflucan 150mg tablets..1 today, another in4 days and another 4 days later. Also nystatin/triamcinolone cream. I am hoping this willhelp...but I have my doubts as so many have gone the yeast route and failed. I will reportback with the results. In the meantime, we must continue to research and learn from eachother....chin up!!
CommentI have found a wonderful, understanding OB/GYN in the Salt Lake City area. His name isDr. Howard Sharp, and I would recommend him wholeheartedly to anyone in the area lookingfor 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 somedays than others, but I can't figure out what affects it. My question is, I am scheduledfor 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 wouldbe greatly appreciated. I will do anything to be free from this condition, but I don'twant to undergo any treatment that may make things worse. Please email me if you have anythoughts or advice on this. Thank you so much for this web site. It makes me feel moresane to know that other women are suffering from the same problem that other doctors toldme was all in my head. Thank goodness for a wonderful, understanding husband and a greatdoctor. 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 least5 different providers in as many years, underwent laser surgery of my cervix and wasreferred for counseling (as it was assumed to be psychological). I did find someimprovement in my condition after the birth of my first child; however, at the same time Ihad decided to try hypoallergenic toilet paper. I had additional relief with the birth ofmy 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 infinding out more about the connection between the vulvodynia and pelvic floorabnormalities. There are some symptoms that my mother and her sisters share and some thatI share with her sisters regarding pelvic floor problems in addition to neuromusculardisease that one of my aunts suffers from and that my mother and another aunt areexperiencing symptoms of. I'll definitely keep an eye on your site. Thanks for the helpfulinformation and service you are providing to women who have tried everything else anddon't know where else to go.
CommentThank you for a wonderful website. Would you know of a gynecologist specializing invulvar vestibulitis in the Toronto area? The last OBGYN I saw wanted to send me to atherapist..... I'm looking for a REAL answer. It's frustrating when your condition isn'ttaken 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 monthsago when i noticed a sting on my left labia (lip) when urinating. On doctors diagnosis iwas told i had genital herpes YUK!! but further testing proved this diagnosis wrong. I wasput on Zovirax for this so called herpes but only ended up with thrush as a result. Thiswas when the burning and irritation started.So i was treated with Canesten with nosuccess,the thrush persisted (i have never been a chronic thrush sufferer)before this ihad only had thrush once before and that was when i was 17 i am now 31.I feel i only gotthe 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 monthsago when i noticed a sting on my left labia (lip) when urinating. On doctors diagnosis iwas told i had genital herpes YUK!! but further testing proved this diagnosis wrong. I wasput on Zovirax for this so called herpes but only ended up with thrush as a result. Thiswas when the burning and irritation started.So i was treated with Canesten with nosuccess,the thrush persisted (i have never been a chronic thrush sufferer)before this ihad only had thrush once before and that was when i was 17 i am now 31.I feel i only gotthe thrush this time because of the Zovirax but it still doesnt explain where this thingcame from. I have had several bad falls over the years.I fell off a swing in mid air andlanded straight on my back to the point where i winded myself when i was 11.I used to ownhorses 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 allthis is because i have never really suffered from thush or UTI and my specialist seems tothink that my problem has resulted from a fall or a hit to the spine which has caused thisproblem (nerve damage) I do admit that my problem is mild compared to some women i haveread about but the fact remains that i do have it and it probably affects me more mentallythan physically. I experience mild burning and irritation in my vulval area most of thetime. I am thankful that i do have a partner who understands but i would give anything togo back to how i was 6 months ago. I have tried a few things for relief but most havefailed these include Triptanol (antidepressants) Vitamin A ointment which only made theburning 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 specialisttomorrow and i believe i may be put on the biofeedback program which i hear has been quitesuccessful for some women. I think this involves doing exercises for the pelvic floormuscle to strengthen it Before i was officially diagnosed with this THING i must have goneto at least 8 different doctors only to be told that i may have thrush or some sort ofinfection which i knew this was not the case because i had been tested for all infectionsbefore. I had heard of this condition and i had to see a gyn o and when i asked him ifhe'd ever heard of Vulvodynia before he just looked at me and said "Whats that,i'venever heard of it and its never come into my practice and this is a gynaecologist.I feltlike a real fool but i was finally sent to a dermotologist who diagnosed me with thisTHING.I walked out of her office feeling at least relieved that i DID have something wrongand it wasnt just all in my head like alot of doctors made me feel. Anyway i would like totalk to anyone experiencing this problem and let me know about some of the treatments youhave tried as i am open to just about anything once. I'm not saying they will work for mebut i sure am willing to try. All the best ladies and hang in there because i like tobelieve 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 putme on this because the citrate and diet were not showing any improvement. Please E-mail mewith any information you have about these medications.
CommentDear fellow sufferers of vulvar vestibulitis, This is the third or fourth time I haveposted. I suffer from pure vulvar vestibulitis- pain only upon touch to the bartholingland area. I want to report that I did have a vestibulectomy with vaginal advancementalmost four weeks ago. I am still in the healing stage of recovery and my stitches arestarting to come out and dissolve. It is still a matter of time until I will know if thesurgery was successful. I try not to think about the 10% chance it will not be. If anyonewants 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, itmay be possible that you have an overgrowth. Find a Dr. of integrative medicine and getyourself tested for yeast overgrowth. I have been suffering for about 2 yrs. now. Vaginal cultures come back negative, butstool samples show yeast overgrowth. You also might try cutting back on sugar in your diet, and see if this helps. Ananti-yeast diet consists of no yeast products, no sugar, no white flour products, nodairy, 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. Ihave had a full surgical hysterectomy and removed gall bladder. I have been searching formedical help, answers, treatment, etc. I suffer 24 hours a day and I would like someadvice from Dr. Glazer. Thank you!
CommentHello. I have suffered with vulvadynia for appx. 4 years.I have also been diagnosedwith endometriosis. I'm 23 years old and have let this condition destroy my life and mymarriage. My husband has been very patient, but he feels that I have given up. I guess Ihave just been pretending it would just go away, or maybe it really is "in myhead". I have been to a number of doctors and ended up self-diagnosing vulvadyniasince discovering the nva a couple of years ago. I have been frozen, burned, biopsied, andeverything else. Only recently have I heard a doctor utter the word vulvadynia inreference to me. It is such a relief to know that I am not alone. I would love to find asupport group in the D/FW area if anyone knows of anything. My marriage is hanging on by athread because our sex life is nonexistent. My husband is so afraid of hurting me that hehas no desire to even touch me in an intimate way. If anyone can help me please e-mail meat katy.fenley@gte.net
CommentHi everyone. I had surgery in late August to treat vulvar vestibulitis. It is still toosoon to tell if my surgery was successful. I had a perineoplasty. I'm feeling pretty goodthese days but I am still on the "mend". If anyone would like any information onthe 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 sofar for vulvodyna and am interested in being informed on new and successful treatments andsuggestions for my condition.
CommentI am 25 and have been suffering with burning during and after intercourse for 5 1/2years. Prior to this horrible experience I had a miscarriage and along with that, Isuffered major problems with my family, which caused me even greater pain. After themiscarriage I began noticing this burning after intercourse. At first I thought it wasnothing to worry about until it started to get worse and worse over time. Sometimes thepain could last for several hours. Doctors would tell me many of the same things that Ihave read about in this website. Things such as, they believed it was a mental problembecause of the family problems I suffered and the miscarriage, it was thought to be avaginal infection among many others that I can't remember at this time. I have spent thepast 5 1/2 years thinking I have done something wrong and wondering when the day wouldcome that my husband would not want me anymore. I have no interest in sex anymore becauseI can't stand the pain. I thank God that I have married somebody so wonderful who hasstood 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 totry 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 thiswebsite, because for the first time I don't feel alone. I live in Tampa, FL and would loveto hear from anyone in the area who I could talk with. I joined the National VulvodyniaAssociation (301)299-0775 and hope they can help me out. This website is great and I lookforward to reading all the messages.
CommentI am 46 years old and have suffered with vaginismus and pain upon intercourse all mylife. I am a DES daughter with signigicant structual abnormalities of the uterus whichresulted in an inability to carry a pregnancy to term. Despite seeing many ob/gyns all mylife I was just recently diagnosed as having a vagina that is fused at the top and thebottom, making the opening very small.This structual abnormality I am told is consistentwith the structural abnormality of my uterus. All caused probably my the DES exposure inutero. 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 structuralabnormalities 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 outtogether. List all foods and beverages ingested. Continue with your anti-deps. Also, keepa 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 thiswill worsen the problem. By all accounts, believe it or not, the skin of patients withthis disease appears to be normal. Using steroids on seemingly healthy skin is bad news. Irecently had interferon injections, which CURED the vaginal pain. Now I'm working on thepain in & around the urethra area. No, I do not have a urinary track infection or anyrelated disorder. I have been tested for everything by a urologist. I know it's the samepain I felt vaginally, because that's not a pain you forget. It makes sense that it feelsthe same but in a different area, because the skin in the vagina & the urethra isvirtually the same. I'm going back to my doctor to see if interferon injections in thisarea is an option. If he agrees and it works, I think it's safe to assume that MY pain wascaused by a virus. My theory is that this disease has several different causes. After all,the direct translation of the name "vuladynia" simply means "vulvapain." Perhaps some of these tips will help ALLERGIC / DERMOLOGICAL: Use onlyNorthern FREE toilet paper which contains no dyes, perfumes, etc. Use natural tampons. Donot use soap -- rinse area with plain water. Do not use an feminine deoderant. Take anantihystamine. Follow the low-oxylate diet. Chill out & see what happens after 6weeks. If still suffering, move to NEUROLOGICAL: take tri anti-deps (you may have to tryseveral different kinds -- insist on it) or anticonvulsants for a minimum of 3 months permed. Get your butt in a good biofeedback program, such as Dr. Glazer's. Best of luck anddon't forget to report back January 1.
CommentTo JESSIE STEPP: If you have HPV, get Interferon Injections. You have a 90% chance ofbeing pain free. Good luck!
CommentTo JESSIE STEPP: If you have HPV, get Interferon Injections. You have a 90% chance ofbeing pain free. Good luck!
CommentI have written before and wanted to give a update which may help some of you stillcurrently 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 vulvarvestibulitis. I followed the diet and took calcium citrate religiously for over 2 years. Ican honestly report that I did not get significant relief and in June, I removed myselffrom 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 recentlystarted using ULTRASOUND in the vulvar area. IT IS HELPING ME!!!!!!!I actually feel painrelief. I am one of the unfortunate women who have vulvar burning constantly. Theultrasound works by helping the MAST CELLS and with INFLAMATION. Is there anyone out thereusing it? I recently contacted Dr. Glazer about it and he responded saying he was notaware of its use. I am not cured. But it helps the pain and It doesnt hurt. Just think, anonenvasive procedure??? If you want more information on it, please feel free to e-mailme. Before I go, I wanted to remind you of a few things regarding treatment. What works forone, may not for the other. I have tried acupuncture for one year. No major relief. Theanti-convulsants also did not help me. I have tried every known cream on the market, adozen antibiotics, antifungals, anti-yeasts and antidepressants. Elavil made me gainweight so I switched to its sister drug Pamelor, but it didn't help that much. Since thereis 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 eachday, minute by minute and start a diary or journal and document your pain. Write down whatgives you relief. ICE or HOT BATHS. Get educated. Not only do we have this outlet, butthere are 2 associations, the NVA and VULVAR PAIN FOUNDATION. I urge you to join one orboth. Find a support group in your respective areas or start one on your own. Bottom lineis this. THERE IS NO KNOWN CURE!!!And I hate writing that down because I have this too. Ihave had the painful biopsies, nerve blocks, ureathral catherizations, and all thehorrible 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 fromit. Together we will find an answer to this pain. Slowly, this disorder/disease is gettingattention. But it takes us, the sufferers to educate. You are not alone. Take heart. Oneday 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-mailaddress, so I am trying to get back to everyone who has the old address and give them mynew one , THANKS Robin Young
CommentI wanted to update my progress with vulvadynia. I have had this terrible disease for 3years and have finally found success,Dr. Libby Edwards diagnosed me, and since I havefound a Dr. who knows something about whats going on with the local discomfort. Anuerologist was the answer for me. I started out on 200mg of neurontin and I am now up to300mg, 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 tobe here with this terrible feeling. I don't know if everyone is different, but this iswhat 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 aftermy wedding. I cannot have intercourse with my husband due to constant burning pain andrawness I feel afterwards. I have been taking the antidepressant Amitripytlin since 1991and it has helped me tremendously. Well at least vulvodynia doesn't torment me 24 hours aday, 7 days a week like it did for the year and a half before I was diagnosed. I can saythat with the help of God, a wonderfully loving, supporting and understanding husband andmy family I have been able to live with Vulvodynia instead of being tormented by it. Forthose of you who have recently been diagnosed with Vulvodynia my prayers are with you. Forvulvodynia sufferers all over the world I encourage you to keep the faith and live eachday to the fullest. It is okay to be depressed on some days but don't let the depressionovercome you. We all have to be strong and fight a good fight. There will be a cure oneday. We just all have to believe and keep the faith! We are not alone - We have eachother!
Commentthis site was recomended to me by my gnecologist. I have had a few major operationssince 1994 for vulva cancer. when I went to see him recently we exchanged e-mail addressesand 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 beenlooking for a support group for vulva cancer over the net and can't find any. I don't knowof 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 tovarious 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 knowthat there is someone out there that is like me and understands what I go through and havebeen through the past 2 years. Many doctors diagnosed me with mental disorders and saidthat there was nothing physically wrong with me after running many tests. But I knew therewas something physically wrong . Finally my ob doctor referred me to a specialist in thetexas 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 atjohnm@lcc.net.
CommentKatie, You said that you were diagnosed with vestibulitis about a year ago and that you had avestibulectomy done by a Dr. Godofredo in St. Louis and now your normal. I was justwondering if you had the burning feeling constantly or did you just have pain when thevestibular area was touched? My doctor thinks I should have a vestibulectomy but I wouldlike to know what your symptoms were before I even consider it. Hope you recieve thismessage. 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. Iam really getting tired of the ignorance of the current doctor I am seeing. His answer isto up the Elavil. I'm sorry but I don't feel that the answer is to numb myself. I do notexpect to be "cured" overnight. I just want someone that will work with me notlook at me as though I am just someone to pity. Also, is there anyone who has tried aHomeopathic doctor? I am seriously considering it. I figure at this point what do I haveto 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 stanfordlast year. My symtoms have progressively worstened. Vulvadynia now seems accentuated. Yourinfo 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 veryinformative article in the Fall 1998 NVA newsletter. It is written by Dr. Borenstein andhe discusses the various treatment options available. If I remember correctly the NVAcosts about $35 to join, but it is money worth spending.
CommentHi, I am a vulvar vestibulitis sufferer from Cambridge. England I have had thecondition for seven years now. My consultant is Chris sonnex from Addenbrooks atCambridge, where we have also formed a self help group called the focus group. We would beglad of any information you can send us. Thanks. It's wonderful to know that someoneelseout threre is working on it
CommentVery useful information however how can I find help where I live. Need more info ondoctors who know about this disease. Just this week diagnoised and very depressed aboutthe 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 OFYOURS. I JUST WANT TO WARN EVERYONE NOT TO JUMP INTO HAVING SURGERY. I HAVE HAD VULVODYNIAFOR OVER 2 YEARS NOW. I AM 21. IT IS DESTROYING MY LIFE. I HAVE BEEN ON EVERY MEDICATIONTHAT I HAVE READ ABOUT ON THIS WEB SITE. I HAVE HPV THOUGH I DO NOT SHOW SYMPTOMS OF IT. IHAVE RECURRENT YEAST INFECTIONS. MY PAIN IS CONSTANT. IT STARTED OUT HURTING ONLY UPONTOUCH 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 KNOWONLY WOMEN WITH VULVAR VESTI. SHOULD HAVE THE SURGERY AND NOT WOMEN WITH VULVODYNIA. OHWELL. 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 STARTEDAFTER GOING ON THE PILL AND TAKING ANTIBOTICS. MAYBE IT IS ALL CAUSED BY THE YEAST. IN MYOPINION IT HAS TO BE THAT OR CAUSED BY HPV. I AM SO FRUSTRATED. MY BOYFRIED HAS STUCK BYME THE WHOLE TIME. WE HAVE NOT BEEN ABLE TO HAVE SEX IN A YEAR AND A HALF. THE PAIN ISUNBEARABLE. 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 mostdifficult thing that I have had to deal with in my life. I also suffer a great deal fromanal burning -- especially when I have a bowel movement. Does anyone else have thisproblem? How do you find relief?? Any help, would be greatly appreciated. Thanks fortaking 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 andI too have been suffering from vulvodynia for a little over two years. I also wasdiagnosed with HPV although I have no symptoms. I asked my doctor to allow me to tryNizoral which I started taking on 12/1. I read about a woman by the name of Robyn who hadmuch success with this medication although I feel a little nervous about a medicationwhich 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 youhave access to a computer and would like to talk with someone who understands. Feel freeto e-mail me. P.S. I live in South Florida and am also fortunate enough to have a boyfried who hasbeen very supportive and the best friend that anyone could ever ask for. Best of luck toyou. Stephanie
CommentI'm 24 and was diagnosed with vulvodynia/vestibulitis in June by my very wonderfulgynecologist. I am thankful that he recognized it so quickly, especially given the manyhorror stories I have read here about women who've gone to many doctors for several yearsand been accused of it "being in their head." While my gynecologist does notspecialize in or treat vulvodynia, he has been a great source of information, as well asbeing able to help me reason through my options. I have seen a woman who specializes inthis problem, but thus far all she has done is put me on Elavil. For the last three monthsI have been taking it, but I have to be honest, it really hasn't helped. She started me at50mg and eventually pushed me up to 150mg, which I have heard is a massive amount to betaking. Does anyone have any knowledge about this? Also--has anyone who has taken itnoticed a side effect of involuntary twitching in your leg muscles? Please email me if youhave. Anyway. I am going to visit a urogynecologist in this area in January. Hopefullysomething she can recommend will help. Does anyone know of any good/knowledgeable/helpfuldoctors 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 Iam not alone. As I read the stories of all of my fellow sufferers on this site, I see myown 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 anydoctor in the Cleveland, Ohio area who is knowledgeable about this condition. What is theGlazer Protocol mentioned? Can you prescribe any product or procedure that might help meor should I come to see you in New York? I am 77 years old and would appreciate any adviceyou 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 diagnosedonly two years ago and have experienced tremedous relief by taking Elavil and usingtopical creams. From my diagnosis, I have improved approxiamatley 85%. I have recentlystopped taking Elavil because my husband and I are planning to start a family. In turn, Ihave started the low-oxalate diet along with daily doses of Citracal, hoping it willreduce some of the pain. I have been off the Elavil for about 5 weeks now and I amstarting to experience some of the same discomfort I had 2 years ago. Does anyone have anysuggestions on how to make this transition any easier? I am also looking for someone whohas 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 angryand asking "why me?" I believe the more I learn about the condition and itstreatments, the better off I will be. I am looking for support groups and/or volunteerawareness groups to become involved in. It amazes me that many of the area doctors are notfirmiliar with Vulvodynia. How can we make the medical community more aware? Makeinsurance companies pay for more treatments? What research is being conducted? Are thereany new revelations? Any information anyone has would be very appreciated. I am lookingforward to hearing from people I can relate too.
CommentHi fellow vulvodynia sufferers. This posting will not be as positive as my last one asthis has not been a very good week for me. I have good wweks where I try to be as positiveas possible and then I have weeks like this one where I don't do so well mentally orphysically. I am feeling a little depressed today because of the rawness and irritationthat is bothering me. My husband and I had intercourse last night (had to quit halfwaythrough due to the pain) and I just feel soooo inadequate. I have a loving husband who isvery understanding but I just cannot help to get discouraged sometimes. I have beensuffering from this conditon for 8 long years (since 1 month after my wedding)and by now Iwould have hoped to have started a family. I really want to get pregnant and experiencethe joy of being a mother but all I can do now is cry envisioning what it would be like toengage in hours of lovemaking with my husband and to see the little "+" sign ona pregnancy test. It justs gets so frustrating and depressing sometimes. It can beoverwhelming. I just wanted to express my self while crying knowing that others who readthis 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 veryhealthy, active woman then this ugly itch came along. She tried all the creams and drugsthat you have all mentioned in your articles. She was into a deep depression when herdoctor recommended a local psycharist who told her that he could make her feel normalagain. AND SHE IS! I won't say she's cured but she is a different woman now. She is nowagain mom as I have always known her. She does not have the internet and therefore sheasked that I post the pills that she has found that have made her feel human again. Shehas complete sympathy with all sufferers out there, because she was also at a point whereshe would have done anything for a day of relief and now she is in reverse where she onlyhas the odd day of pain. The drugs (pills) that she takes are: NEURONTIN - 300mg - 2 pillsbefore bed. Also, ASENDIN - 50mg - 1 pill at bedtime and PAXEL - 30mg once a day. Inaddition to these, she takes a weekly vitamin intravenous which is composed of the 3 Bvitamims, B2,B6 and B12, Magnesium 4 and Vitamin C. She has told me that she only hopesthat this information can help somebody out there because she has been there and she wantsto share her results with all sufferers and maybe her information can make someone's lifebetter. If you would care to e-mail me, feel free, as mother is as close as the phone andI will pass on any and all information and requests to her. Thanks for reading and I hopethat 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 iswhat I have. I am 20 years old and have had these symptoms for two years but no doctor hasbeen able to diagnose me with anything. |
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