      |
|
|
 |
View our archived
guestbooks here
Contribute to the current guestbook here PLEASE NOTE |
|
This is the
Third Vulvodynia Guestbook.
CommentsHello. I was glad to find this page where people have shared there comments on this. I am 23 years old and was diagnosed with vulvar vestibulitus in April .. about 4 months ago. When I went, the pain was pretty bad during intercourse, but it was not occuring every single time. Also, If i could just grit my teeth and wait .. it would lessen a few minutes into intercourse. The gynecologist knew exactly what I had when he examined me and he prescribed lidocaine to use topically to deaden the area. He explained to me that there was not a lot that could be done and that surgery was not always successful. He really did not act like it was that big of a deal. I had no idea what was in store for me in the coming months. The lidocaine worked fantastically the first time I used it..there was no pain at all. But, that only lasted one time and after that, the relief lessened each time. Now, I can hardly put the lidoocaine on because it burns so bad. If I wait and do not use the lidocaine for a while, it works a little bit, but it still burns... no matter what. I have or at least I did have a very active sex life with my boyfriend of two years. He is very understanding and patient, but it is heartbreaking to me because I know that he must be just a little dissapointed in me, though he will never admit it. I at this point have no idea what to do. I have an appointment with my Dr. this week and I'm going to tell him that I'm pretty much miserable. Something has to be done but after doing a lot of research, I feel overwhelmed by all the information and all the different things to try. I don't know where to start or what to do at this point. I would like to correspond with some people about this... I really could use a friend that understands. Blondie@pnx.com
CommentsI am 37 years old and live in the UK. I have suffered with vulvodynia for 10 years, but have only been diagnosed for 4 years. In 1986 when I met my husband we had a fantastic sex life but it gradually began to peter off as my libido dropped. By 1991 I was having to say "hurry up and get on with it I'm drying up", dead romantic. I didn't have pain at that time just this sensation of drying up during intercourse, I was also having a lot of yeast infections, but when the doctor took a swab the results would often come back as "no treatment required". It wasn't until after my son was born (by caesarean) in May 1992 that the pain began. I had my six week check and a cervical smear was taken, the first time I went to the toilet after that I nearly shot through the roof, the stinging pain was terrible. That was when the pain during intercourse started, I went to the doctor and told him they'd nicked me doing the smear, but he said there was no way they could, he examined me and gave me the all clear. But every time we had intercourse I felt as if the entrance to my vagina was being torn apart, and the stinging sensation when I went to the toilet was there afterwards. I went back to the doctors who said there was nothing there, he referred me to a psychologist because I was getting so depressed, then he sent me to a psychiatrist who said he wanted the physical possibilities eliminating before he went any further with treatment. I had an appointment at the gynaecologist but that was three months away, so my doctor suggested I went to the GUM clinic. Thankfully I have found a doctor at the GUM clinic that understands the problem and is willing to work with me, he accepts this is not all in my head. Unfortunately like a lot of people the treatments we have tried haven't been successful, I seem to have a reaction to most creams and gels, even the water based lubricants, some can have me climbing the walls. I don't tolerate amitriptelyne, the worst side-effect for me is the effect it has on my temper, to be honest I'm evil, and its not fair on my husband (on top of all the other problems) and my 5 year old son. So the latest I am trying is diet, I have been on an elimination diet which seems to have eliminated the itching and discomfort, although I feel the pain would still be there if I had intercourse, and unfortunately I cannot bolster myself to try. I want to try the oxalate diet but cannot find much literature on it, can anyone help. During this period my husband and I went for marriage counselling and sex therapy, the counselling was good because we were on the verge of divorce, but unfortunately the sex therapy was going no where because I just cannot bring myself to have sex unless I am ready, it has to be my decision. Like some of you I don't find the advice that there are other ways of having sex very helpful, I have tried, but I get so terribly frustrated and upset. I have my own suspicions as to why I suffer this problem, one is the over use of anti-fungal creams, the other is condoms, I'd never used them before I met my husband??
CommentsWonderful site, Howard. Congratulations, particularly for your work with our instrumentation. Lawrence Klein V.P. Thought Technology Ltd.
CommentsPlease add me to the listserver. This is a wonderful site and provides a lot of support to all of us. Thank you. I am 34 and have been suffering with vulvar vestibulits for 8 years. I have had two vulvectomies and have found some relief with this last one. I am also using topical estrogen cream, taking Elavil 25mg, Aveeno baths, and I have been on the low oxalate diet for 7 months now taking 8 Citracal pills throughout each day. I was tested by Dr. Solomon, and he set a schedule for the Citracal. The burning has been subsiding, but very slowly. I believe the diet is helping some because if I go off the diet and eat something very high in oxalate one day, I will have increased buring the next. Someone asked where to find information on the low oxalate diet. There is a Low Oxalate Cookbook recently published through The Vulvar Pain Foundation. It includes a comprehensive list of the foods you can and can have on this diet. There are some very good recipes in it. You can call them at 919-226-0704. It is also a wonderful resource for information. There are support groups in different areas of the country through this foundation also. It has taken 7 months on this diet, but I am finally seeing a decrease in the burning. The main problem I fight with is constant vaginal bacteria infections, which, of course, increase the burning. We can't seem to get these under control. I would like to get pregnant, but it seems the symptoms are always worse the week after my period. I know there are other options, but it would be nice to have that part of my life back. I feel like I am going in the right direction with a doctor who is familiar with this and the various treatments and very understanding. Please e-mail me at lsh@acadiacom.net.
CommentsThank you Dr. Glazer for this site. Any way to get more feedback and info on V.V. is one step closer to help for all of us suffering with V.V. I am 30 years old and was diagnosed 3 years ago with V.V. by a specialist in D.C. who shall remain nameless. Sexual contact & intercourse have almost always been painful for me. Also plagued with infections, and have atleast mild burning almost every day. No sex for past three years. I think that my condition in definately due to some nerve damage, as well as tailbone injuries, allergies and a scar tissue. I had my hymen removed when I was about 8 years old after repeated bladder infections and loss of bladder control, by doc thought that my hymen was too thick and pulling my bladder open, so he removed it. I think this may have been the beginning of my problem. I have tried the antidepressants with bad results, as well as hormone creams, and was going to try the interfeuron injections but could not find a willing doctor in my area. I have not tried anything lately to help my problem, guess I have been too depressed, but I am going to try some of the suggestions that have worked for other women on this board. Good luck to all, and keeping trying EVERYTHING. One thing seems clear- not every woman can find relief from the same treatments. We are all different, and its just trying to find what works for you. PLEASE ADD ME TO YOUR LISTSERVE. THANKS MUCH!!!!!!! Kathy
Commentsi HAVE BEEN DIAGNOSED WITH VULVODYNIA AFTER ABOUT TEN YEARS OF CONSTANT PAIN, ITCHING, BURNING AND IRRITATION WHICH MULTIPLE PHYSICIANS COULD NEVER DIAGNOSE. I ALSO HAVE ENDOMETRIOSIS. I HAVE NOTICED THAT WHEN MY ENDOMETRIOSIS PAIN IS BAD, THAT THE VULVODYNDIA SYMPTOMS WORSEN. I HAVE EXCRUTIATING BACK PAIN AND CANNOT LAY ON MY BACK FOR ANY LENGTH OF TIME. I HAVE LOWER BACK PAIN AND PAIN DOWN AROUND MY TAILBONE. I HAVE SEEN SEVERAL DOCTORS AND THEY ALL SAY THAT THERE IS NO RELATIONSHIP BETWEEN MY ENDOMETRIOSIS AND VULVODYNIA. HOWEVER, I ALMOST ALWAYS EXPERIENCE THE TWO AT THE SAME TIME WITH THE SAME LEVEL OF INTENSITY. I AM CURRENTLY ON 20 MG ELAVIL PER DAY. HAS ANYONE ELSE SEEN A RELATIONSHIP BETWEEN ENDOMETRIOSIS AND VULVODYNIA? PLEASE ANSWER ME.
CommentsVery happy to find your site.... I'm the site manager for the Interstitial Cystitis Network website.. and, as I'm sure you're well aware, vulvodynia and vulvar pain are related conditions to IC. We've been offering chats and interactive message boards for about three months now.. with a fantastic response. Nearly a thousand visitors a day... with the new interactive portions. Also... we have a researcher board that is password protected for research professionals .. and hope to add a physicians forum as well. Love to share strategies with you on running live groups. I've been running on-line and inperson group meetings for over three years and it presents some interesting challenges. Best of luck.. and so glad you are here to represent the needs of this often underestimated group of patients, including me! Jill Osborne IC Network Manager, Age 37 Diagnosed with IC at 33 Diagnosed with Vulvadynia at 28 Please come visit our website at: http://www.sonic.net/~jill/icnet/ I'd love your feedback as well! BTW.. my secret weapon... www.pergatory.com... for all of our message boards! Excellent, very affordable and convenient!
CommentsWow! I just spent nearly 2 hours reading the above comments. Great, thoughtful idea Dr. Glazer- and please add me to your listserve. One thought of mine- balance. I have been managing vaginal pain for 8 years. What is newly clear to me these past few months, is that, simply put, my body is out of balance. I believe that this is the one thing we all have in common- our body systems, for whatever reason- chronic stress, antibiotics, poor diet, childhood trauma, pollution, etc.., are out of balance. With this in mind, I am very careful, more careful than I have ever been when it comes to choosing treatments. If something could potentially couse harm to my body, I don't use it. Years ago I tried amitryptylin (Sp?) through the advice of Dr. Benson (mentioned above). While I know he has very strong opinions about the positive use of such drugs, I do not. Side effects, are very real and common effects of drugs. They are called "side effects" because they are not the desired effect. In the case of Amitrip., it causes intense thrist and dry mouth. This is an example of how one can further throw one's body out of balance- anything that strips your tissues of water and causes chronic dehydrative states leading to constipation, is not a something that will help one's body heal itself back to balance in the long run. Similarly, Linocane or other such things people use to make intercourse bearable, is a severe insult to your skin, causing further problems and slowing your tissues efforts to restore themselves. I am better than I was 8 years ago. I still have pain that sometimes drives me to cry hard and become very sad. Overall, however, I feel much stronger and more solid pysically and emotionally. I have a supportive partner, but really struggle sometimes. We also laugh a lot about a lot of things and that's a delight. I practice Yoga evry morning, and I am looking into becoming a certified teacher- Yoga really centers me. It also encourages my blood flow, muscle relaxation and flexibilty. I may try Entrace after I research it. I am looking for a Doctor who believes in restoring health by bring bodies back to balance. In general, I believe that I have best been helped by good, healthful food, rest, homeapathy, vitamin E, yoga and working with a physical therapist. If my budget can manage it, I will be meeting with an Auryvedic Doctor next month. For anyone who isn't familar, Auryvedic Physcians are trained in India, where health is viewed in terms of balance. Oh yes, I also have a few words about the low oxalate diet: I have been on it for 5 months and take a Calcium/Magnesium suppliment. The combination has taken he edge off, but I'm not sure the diet makes much difference. I suspect it is the Cal/Mag that works on my muscle tissue, helping it restore itself and to relax. Both these nutirents are known to aid in muscle relaxation and muscle tissue development. I do not plan to stay on the diet for long, nor to rely on suppliments. I firmly believe that, while these help relieve sypmtoms, they do not touch the source of this pain. I'm not sure what will, but in my heart, I believe severe diet restriction is not helpful for the body in the long run. Well, on the light side, I made bread today and walked my dog in the rain. I wish each of us clarity about what will truly help, space to cry and bitch when we need to, love (cause we can't go it alone), and patience. Thanks to Dr. Glazer and Dr. Solomons and the Vulvar Pain Fdt. for their concern and really hard work-Kristen.
CommentsHi. I am 24 yrs old and began having vulvar pain 1 yr ago. Actually I have always had some pain with intercourse but now it is impossible. I was married in oct 96 and my husband and I were able to have sex that summer but in August 96 it just came on suddenly. I had treated myself for what I had thought were yeast infections for 3 months and then finally had a dr tell me there was no yeast and that my husband and I should treat ourselves for bacterial infection. I noticed that some people have had back injuries; I also have fallen directly on my tailbone when I was 10 and had a cyst and scar tissue removed when I was 21. Maybe there is some correlation. I also have a history of abnormal paps and have had laser surgery on my cervix, and I also have been treated for warts. After 10 months I have found a dr through the nva to treat my pain. He first tried amitriptyline 10mg and I had bad side effects. Now I'm currently undergoing interferon injections to treat the hpv virus and hopefully treat the pain. This site is so great to hear that others have similar symptoms!
CommentsLast evening, Sunday, August 18th, marked the first conference held in the vulvodynia chat room. Dr. John Perry and I were present as were patients interested in connecting and asking questions related to vulvovaginal pain. Although there were glitches including difficulties in getting into the room that limited the number of patients, for those who were present it was quite successful. I would like to thank those of you who did attend and we will continue to schedule meetings. suggestions for who you would like to be on line to answer your questions would be welcome. We are also close to launching the vulvodynia listserve which is an email service allowing all members to communicate with one another. Thank you all again for your support of this site.
CommentsI would just like to thank those who attended yesterday evenings conference on the vulvodynia chat room. for those of you who were unable to attend I hope you will be able to make future meeting. It was a very successful start to what I hope will become an ongoing forum for patients and health professionals to exchange information. Also, the listserve, an email list that allows all members to communicate with each other, is getting closer to a reality. I will keep you posted on what is happening. I thank you all again for your support of this website.
CommentsThe Vulvodynia Guest Book has now been divided into three sections; see the link at the bottom to jump to the first and second parts. It was just getting TOO BIG to download and to edit! Many interesting comments and questions here. - John Perry, PhD, Webmaster (=tech support). DryDoc@Conch.net
CommentsSince posting a message to this site on July 21st, I've noticed that quite a few women have reported tail bone injuries. I too broke my tail bone while rollarblading over a year ago. The injury coincides with the onset of most of my pain and itching symtoms. Could this be one of the "keys" to this mysterious ailment?
CommentsI began to experience problems with vulvar vestibulitis about 4 years ago. It took a year and a half to pinpoint my pain and then another year of incorrect treatments and doctor visits to even locate a doctor who could diagnose my problem. I am thrilled to find so much information here and at other sites, I only wish it was more positive. I had a partial vulvectomy and some follow-up surgery. Now, as I am feeling the pain returning I wonder how much more of me can be removed? I am a vegetarian, and I found that many of my main foods are on the "bad" list. Is there any research into this matter? Thank you for your site.
CommentsI began to experience problems with vulvar vestibulitis about 4 years ago. It took a year and a half to pinpoint my pain and then another year of incorrect treatments and doctor visits to even locate a doctor who could diagnose my problem. I am thrilled to find so much information here and at other sites, I only wish it was more positive. I had a partial vulvectomy and some follow-up surgery. Now, as I am feeling the pain returning I wonder how much more of me can be removed? I am a vegetarian, and I found that many of my main foods are on the "bad" list. Is there any research into this matter? Thank you for your site.
CommentsWow! Finally a place to speak about the unspeakable. I have had Vulvodynia for 16 years. I have had IBS for 18 years. I also occasionally have tongue pain and bladder symptoms. I am 36 now, so I guess you could say that I have been chronically ill my entire adult life. As far as treatments go, I have pretty much "been there, done that". I had my minor vestibular glands removed in 1985 at John's Hopkins hospital by Dr. Woodruff himself. I tried the low ox diet and calcium citrate for 11 months. It cured my IBS but seemed to make my vulvodynia worse. I then tried the whole "yeast connection" theory and followed the "yeast" diet, to antifungals and hormones and other supplements for 6 months. NO luck there either. About 1 year ago, my doctor put me on 10mg Amytriptyline for a neck problem I was having. For 6 weeks, my vulvodynia symptoms were practically non-existant! Even when the symptoms returned, I was still anywhere from 60-90% better. Unfortunately after 6 months on Amytriptyline, my eyes were so dry I could hardly see straight. I went off the Amytriptyline and tried Paxil, but that did not work and the side effects were even worse. So then I took nothing for a few months and I still felt pretty good. In Aug. however the symptoms have been pretty bad, so I am trying to go back on the Amytriptyline. It does not seem to be working as well as it did the first time I was on it. Soooooooo, I might be looking for other alternatives again. Dr. Glazer, thank you for this wonderful web site. Please put me on your list server. For many years I have felt that this is not a "vaginal" problem. I feel Vulvodynia is a systemic disease. I also feel that it is biological in nature. I think that someday research will show that a fungus, virus, bacteria or mycoplasma is responsible. Many people site flora altering situations (i.e. antibiotics, surgery, sex) as the start of their symptoms. Couldn't an organism or its' toxins be reponsible here? Let's face it, 10 years ago no one in the medical community wanted to believe that H. pylori could be the cause of most stomach ulcers and today, antibiotic treatment is the gold standard for ulcers! What most people don't realize is that even if you are not taking antibiotics per say, we all get small amounts of antibiotics in the milk we drink and in the meat we eat. Maybe in some sensitive individuals, this is enough to throw off the ecosystem of our GI tract? Well, it is just a theory, but who knows? I am sure glad to hear that doctors out there are still researching vulvodynia. I guess the scientist in me would love to know what causes this terrible disease even if there is no cure. I have two daughters and I worry that some day they too will suffer form Vulvodynia. One thing I have not tried is the biofeedback. I live in WI. Does anyone know of a doctor in WI trained in biofeedback for vulvodynia? Thanks again for this site Dr. Glazer, and don't forget to add me to your list server. Jo Ann
CommentsHoward, I have just recently started to have potential symptoms of what i think may be vulvodynia. I have only one question that I have not been able to find an answer to - for the past 6 months, it hurts me to wear any pants (with the exception of leggings or stretch pants, of course!) and I was wondering if this was a common problem for people who have been diagnosed with vulvodynia? This is what my problems started with. I have not seen this as a sympton in any of the articles I have read. I really appreciate your website because I have been to doctors who have treated me for other "infections" without relief, so it is nice to know that I am not crazy!! Thank you in advance for your help!
Commentshi. My name is p.j. and i was recently diagnosed with vestibulitis. I've been reading articles about this condition and I feel completely discouraged. there doesn't seem to be a successful treatment for this condition. any suggestions? [Webmaster's Reply: There are many articles on the website that describe sucessful treatments!]
CommentsWearing jeans, slacks, or shorts definitely aggravates my symptoms. Whenever possible, I try to wear loose-fitting skirts. Even so, sitting for any length of time always makes my symptoms worse. By contrast, tennis, walking, standing--no problem. While researching various web sites lately, I've come across information on the adverse side effects of three chemicals: sodium laurel sulfate (SLS), propylene glycol (PG), and polyethylene glycol (PEG). At least one of these is found in most toothpastes, detergents, soaps, shampoos, deodorants, lotions, creams, and cosmetics. They all reportedly cause skin irritation. PEG (in high concentrations) is actually used to separate DNA from cells.I've been rinsing my panties (when I wear them) at least twice to get rid of most of the residue detergent, and that does help. The big problem is finding products, especially a deodorant, that do not contain these chemicals. I stopped in a bath and body shop yesterday, and every bottle that I picked up listed at least one of these as an ingredient. Dr. Glazer, do you have any information on the effects of these chemicals on skin?
CommentsI submitted a post in the 1st guest book. For an update, I am doing much better. My only treatment so far has been Elavil. I have gradually increased it by 10mgs every 3 weeks. I am now at 80mgs. The good days outweigh the bad days. I have been painfree for several months. My irritible bowel is better too. The pain only came during intercourse. I was finally able to have painfree intercourse 2 days in a row very recently. However, 10 hours after the 2nd time, I got a sharp pain again. The doctor is pleased with my progress so far. He says I need to get to the dose of Elavil where I can have painfree intercourse, and no pain after.The best therapy is in knowing that I am not alone with this thing.
CommentsI am a 28 year old woman, who 2 years ago, started having intense, daily, buning pain in my vulva region. For two years, every day continues to be a burning hell. Luckily, I was diagnosed within 4 months of symptoms starting as having a vestibulitas/vulvodynia collaboration of problems. I live in the Portland, Or area, and I did see a specialist for the vestibulitas component. I went through two surgeries to remove the skin. They helped a bit with the pain of entry with sex. However, the constant, daily burning still remains in the area. Do you know how long a day is when you can feel every minute of it burning? I have tied a low oxalate diet, Amitriptyline, Nuerontin, Clonidine, Effexor and other drugs with minimal sucess often with adverse side effects. Lidocaine does nothing for me. I often have to sit, spread eagle with an ice pack between my legs. It sucks. I'm very scared that someday I will be unable to work either due to the burning pain or to the adverse side effects of numerous med trials! Currently, I am focusing on the idea that it MUST be possible to locate the nerve pain pathway, then locally destroy the nerve with freezing or burning to replace permanent pain with permament numbness in the vulva region. I have found some info on this on the web but am eager to hear more. Why numb my whole body with drugs when the pain seems so local, specific? I could really use support. Has anyone else read such articles? Does anyone know of local doctors here in Portland who might be receptive to helping me find answers? I am willing to travel if a professional would be willing to see me and help me agressively look for answers! I have a detailed case history which includes chronc urinary problems and I did injure my tailbone as a teenager. Misfiring of nerve endings seems to be my issue. I am so frustrated and afriad that no one will be invested enough in my care to help me find the answers I need! I would love to be added to your list and I welcome anyone to contact me. We must continue searching for solutions! I for one, cannot just exist in this present condition. Thanks for listening. Sincerely, Christie
CommentsSharon Chellew email-chellew@pris.bc.ca I think you site is wonderful. It is very information. I also enjoy the meetings. I have long known of this disease a short time but I am finding a lot of information about it. I have also meet other nice people though this forum. Your work on the home treatment of electromyography is an excellent idea. I'm sure it will be a big hit especially it covered by health plans. I am really glad you have provided us with this site. You are very knowledgable and caring. Thank you
CommentsSharon Chellew email-chellew@pris.bc.ca I think your site is wonderful. It is very information. I also enjoy the meetings. I have only known of this disease a short time but I am finding a lot of information about it. I have also meet other nice people though this forum. Your work on the home treatment of electromyography is an excellent idea. I'm sure it will be a big hit especially if it is covered by health plans. I am really glad you have provided us with this site. You are very knowledgable and caring. Thank you
CommentsFolks - this may be helpful: There's a new drug out by 3M pharmaceuticals called Aldara Cream, used to treat HPV infection. HPV is often correlated with vulvodynia, even if the causal connection is in dispute. You may have HPV even if you don't see any warts -- so-called "subclinical" HPV can only be diagnosed by biopsy and can be more associated with pain than the more visible varieties. Unlike virtually all the other treatments on the market, Aldara is NOT tissue-destructive, but works with the body's immune system to attack the virus. I'm starting my first week with it and am hoping for the best.
CommentsHi! I wrote back in May, but thought I'd check in again. I'm 25, and have had vulvodynia for about 9 years. After reading all of the aboe comments, I jotted down a list of things that a lot of these women have in common: tail bone injuries, Irritable Bowel Syndrome, migraines, Interstitial Cystitis, fibromyalgia, vaginal/ovarian surgery, Human Pap. Virus, repeated bladder infections treated with antibioitics, etc. After speaking to my psychiatrist about these common themes, he said that a lot of these problems are related to depression. Obviously, a lot of us are on anti-depressants now, as a direct result of the stress of dealing with vulvodynia. However, maybe some of us have depression in our families and/or were depressed before the symptoms of vulvodynia even emerged (like me). My psychiatrist said that obsessive compulsive disorder and eating disorders are also related to depression (once again, not that people with these disorders are depressed because of the disorders themselves; but that depression may have come first....). Clinical depression weakens the immune system. Maybe there is a relationship here? Do any of you out there know if clinical depression runs in your families? I also agree with another women who wrote about our well-being in a holistic sense....I believe that when one system in our body is screwed up, it can and does affect other systems. Also, there is a strong mind-body relationship which we underestimate. We know that depression can cause colds, and that stress can cause heart-attacks, and that people can get rid of headaches through visualization. We need to view vulvodynia with the same holistic approach. Anyone else have thoughts on the possible depression link? I am going to try Elavil; it seemed to work for a good number of you, and nothing else has worked for me. Dr. Glazer, thanks so much for creating a forum in which we can all work together toward a solution.
CommentsI was diagnosed with Vulvodynia back in April this year and with Vestibulitis a couple of weeks ago. What I can't believe is that the Dr who diagnosed my vulvodynia never mentioned the vestibulitis. I have been suffering with chronic pelvic pain for 2 years now and just when I think I know all about my problem, I am diagnosed with something else. I have tried various creams - they just burn, I have tried amitriptyline - for 12 months now, no success, and I am willing to try anything else. I too am sick of the reliance on medication for all of my problem. I too have had cervical surgery and a hysterectomy. My pain only worsened after these surgeries that were supposed to cure me! I also have a nerve root stimulator on my S2 nerve that I have had in for almost a year - this has not helped with the pain but has helped with urinary problems that I have. What next? I have seen 3 different Drs in the last month and nobody knows what to do with me. I am getting depressed and don't know which way to turn. I feel lucky that at least I am believed. Please add me to your list serve - I will be checking in often looking for advice/help
CommentsHello, I'm a 20-year old Dutch girl, who has also been suffering from vulvodynia for 4 years now. Unlike most of you, I have never been able to have sexual intercourse with my boyfriend. We do have a very pleasant sexlife though, because we have found other ways to make love to eachother. But ofcourse I also want to do something about this problem. Right now I'm being treated by a doctor who surely believes that an operation is the best solution to it. He has a lot of experience with this and he claims to have very good results with it. My boyfriend and I are however a little reluctant, because it is not something you can undo once it's done. At this point I don't really know what to do anymore. There doesn't seem to be a treatment that will work and that doesn't have negative side-effects. I would like to know more about the biofeedback program, because that sounds very convincing to me. I just don't think that anyone in Holland can help me with that. I'm glad that I've now found this site, cause I now know there are a lot of other women like me. I would love to have reactions of whoever wants to mail or write me, and in particular european people (maybe even Dutch!?). Thank you for listening to me, I could use it, and good luck for all of you! Anneke van Heesch, Hugo de Grootstraat 32, 6522 DG Nijmegen, The Netherlands.
CommentsI am a 26 year old professional and have had "essential vulvodynia" for almost 11 months. I'm so glad to have found this website...my life has not been the same since I was diagnosed with this crippling disease. I find it very therapeutic to be able to vent about this to others who are suffering. It seems that no one else understands what this can do to your life. I have been to many doctors, had a biospy and endured many pelvic exams only to be told that there is really nothing "they" can do. As for the doctors, I would be happy to find one who really cared about what I was going through. It seems they have no interest in really helping me. Right now, I'm on Elavil, but it's not working as of today. The side effects are quite horrible for me, so I will probably go off of it in the next couple of weeks. I've tried antifungal creams with and without steroids, nystatin, diflucan, and Vitamin E with no avail. Personally, I think I have nerve damage as a result of a severe yeast infection. Before this yeast infection, I had no problems whatsoever! During the first 3 months of my newly found problems, I had bladder infections along with the stinging and burning. Luckily, the bladder infections have subsided. I'm quite depressed about this whole mess. I feel I have no hope for ever being "normal" again and living with this chronic pain is sometimes just too much to bear. My boyfriend is quite understanding, but it doesn't help me much because I feel abnormal despite his unwavering support. I'm at the end of my rope and only hope that someone can find a cure for this.
CommentsThank you for providing this site and the mailing list--I was considering starting my own vulvodynia list, since I couldn't find one, but you beat me to it. (I'm not upset--I already have another list to run.) I have suffered frrom vulvar pain and burning for at least 6 or 7 years now, though the symptoms have changed (from being more itching to more burning in recent years). I've been to various doctors, and they've diagnosed it as various things from recurrent yeast (even though half the time no yeast would show up), bacterial vaginosis, HPV (even though I've had this since I was a virgin, so that probably isn't the primary cause of it), etc. I've also had doctors treat me like it's either not very serious or all in my head, both of which were annoying to no end. My current doctor is a gynocologist at a University medical school. I'm now on Elavil (25 mg, though I'm going up to 40 soon), which doesn't seem to be doing much but isn't hurting either. I'm also going to try out the low oxalate diet, though my doctor said that her patients haven't had much luck with it, but it can't hurt. I'm looking into biofeedback as well, but only if my health insurance will pay for it, since I can't afford it otherwise. Unfortunately, my doctor doesn't have a biofeedback machine, though she wants to get one. (Not that that helps me much--she already isn't on my PPO and is costing me a lot to go to.) Thank you again for providing this site for information on a problem that has been ignored and treated as insignificant for so long. Sure it's not something you die from, but it is profoundly disturbing and upsetting for those who suffer from it. I'm looking forward to being on the list.
CommentsGreat work Howard! Good to see the positive response from sufferers and professionals. I'll continue to monitor the discussions from downunder in Australia and to offer any asssitance and support to individuals here and on the internet. There are many affected by the condition with out recourse to specialists who may have an interest and knowledge of the condition. It's our real hope that you will be able to join us again in Australia the early part of next year(1998) and that we will continue to offer opportunities to clinicians to be involved and to understand these conditions better and most of all to assist their patients more effectively. Should any of the patients or clinicians from Australia wish to join us, they would be most welcome. I hope it will be acceptable to post information relating to your visit on the Vulvodynia home page.
CommentsI have had vulvodynia for 3 years now and have had some unforseen relief. I have been on amytriptiline for several months (10mg tablets). I had been building up to 70mg per day. My doctor prescribed me Elavil in 25mg tablets so that I would not have to take 7 different pills. The difference has been astounding. I recently ran out of the Elavil and went back to the 7 10mg tablets and I have had really bad flare ups ever since. I do not know why the tablet dosage would make such a difference, but it has made the weeks prior to and during my period way easier to handle.
CommentsJody Stutzman posted about depression and its relationship to vulvodynia. I just wanted to throw in that some studies suggest that people with fibromyalgia may tend to have a history of depression. Let me be very clear here, THIS DOES NOT MEAN THAT FIBROMYALGIA (or vulvodynia for that matter) IS A PSYCHIATRIC DISORDER!! Depression is related to neurotransmitter imbalances and is treated with medications that effect neurotransmitter levels in one way or another. Some experts think that fibromyalgia is caused by a similar mechanism. And if someone has one disease that is related to nervous system dysfunction, it would certainly make sense that they could have another. The reason all this is relevant is that vulvodynia is often a associated with the larger syndrome of fibromyalgia (which is a consteallation of symptoms effecting pratically the entire body). It's all related somehow! |
Home | Products & Services | Research & Articles | Connect with others | Dr Glazer | Professional Area |
