Name:
CommentWelcome to the 28th guestbook for the vulvodynia.com website. If you have any ideas on how to improve the website please do not hesitate to email me with your suggestions. Vulvodynia.com is switching servers soon and any problems which you encounter should be reported to me so I can get them fixed as soon as possible. Thanks Howard I. Glazer Ph.D. owner, www.vulvodynia.com
CommentJust checking to see if we are back in business.
CommentHello all Glad to see the guestbook is up and running again!!! Frank - we are back in business!!! Well, I am scheduled for a vestibulectomy on 13 September 2008. I am very nervous about surgery, but after having this for 6 years I am willing to try just about anything!! I think that the procedure will be a bit different for me as my pain is not at the opening of the vagina. I have literally one "spot" just above the urethra, in an area that is also part of the vestibule. I am presuming that they will just excise that particular area. Has anyone else got pain in this particular area? Please post if you have had a vestibulectomy. I am interested in finding out about the success rates ( I believe up to 90% ) and also how long and / or difficult the recovery period was. My doctor has said I can go back to work after 2 weeks. Looking forward to hearing from you all, luv Josy
CommentHi everyone...I just finised reading a book called the "V Zone". I highly recommend it. There is a section on vulvodynia and it gives some great tips. I found it at my local library. Believe it or not, I think that book gave me a better understanding of what I have going on than what my doctors have told me.
CommentHi again- I was diagnosed with vulvodynia, but I really have more itching than pain. The itching has been going on nonstop for 10 months now. I have been tested for yeast and bacteria. Does anyone have any suggestions or maybe some testing you've had done? At times I'm completely miserable. It's difficult to even go outside for a walk. I was given a cream called Elocon (mometasone furoate) which does help a lot, but not enough to clear the itching up. It bothers me the most at night. I've notice any kind of heat aggrevates it, for example tanning or direct sunlight. Any suggestions? Thanks Holly
CommentHi again- I was diagnosed with vulvodynia, but I really have more itching than pain. The itching has been going on nonstop for 10 months now. I have been tested for yeast and bacteria. Does anyone have any suggestions or maybe some testing you've had done? At times I'm completely miserable. It's difficult to even go outside for a walk. I was given a cream called Elocon (mometasone furoate) which does help a lot, but not enough to clear the itching up. It bothers me the most at night. I've notice any kind of heat aggrevates it, for example tanning or direct sunlight. Any suggestions? Thanks Holly
CommentHolly: Did you have a biopsy to see if you have Lichen Sclerosis or Lichen Planus? Both of those can cause itching. I have Lichen Sclerosis which was diagnosed by a biopsy. However, unlike most, I never had a lot of itching. I had 24/7 burning for many years. I hope your Dr. comes up with the right diagnosis and treatment. Good luck. Sue
CommentHi Sue I read in your post to Holly that you had 24/7 burning for many years. I am sorry to hear that and I know how you feel!! Have you found a cure? Are you better now, and if yes, what took it away? Exactly where was your burning pain? I have burning too just above the urethra and am probably having surgery to remove that area. Sorry about all the questions!
CommentHi Sue- I have not yet had a biopsy. My doctors keep telling me that it will only show inflammation. It's so frustrating! To me it feels like a bad yeast infection, but all of those tests have come back negative. I supposed to have a yeast culture done next friday. As far as pain, I do have bad days. I recently tried elavil and had to stop it because I gained 20 lbs. I am now on neurontin, and it seems the side effects are the same. I just feel awful. The two medications cymbalta and effexor were suggested to me but my doctor shot them both down saying they wouldn't help me. I was willing to try either one. The weight gain is probably was bothers me the most. Sorry, don't mean to vent but I feel so frustrated! Anyways, thanks for your post! Holly
CommentJust wanted to pose a question to everyone... Are all of you on a medication to treat your pain? Do any of you try natural remedies? I'm just wondering if these medications are necessary, and what other options we have. The doctors just give you a medication, and it's like "here try this", not considering that everyone is different. Tx, Holly
Comment
CommentI've posted here in the past and just want to answer about medications. I was diagnosed with vestibulodynia last February and four months of no help from anyone. I had a lot of success with using Lidocaine cream at night and still continue to use it. In March I began using Elavil and got up to 40mg in May and stayed that way until early August. I felt so much better but I did gain some weight which really wasn't what I needed. I am slowly weaning myself off and notice some difference but not enough to stay on and will keep weaning unless I notice a big difference. The Elavil really helped at the time because I was a basket case -- I wasn't sleeping and crying all the time. Somewhere in all this I became my old self. I am hoping to be completely weaned off in the next few weeks and we will go from there. I think by the time we get diagnosed most of us are beside ourselves with what is wrong and some of these meds not only help our condition but the problem itself which is a nerve problem for some. Hope this helps.
CommentPlease excuse any "glitches" in the guestbook as the vulvodynia.com website is migrating to a new server over the next several weeks. In the end we will have a bigger, better site than ever. Thanks for your patience Howard Glazer Ph.D. owner
CommentDr. Glazer, we spoke briefly while the Internet site was not working. I wanted to once again thank you for providing this oasis for sufferers of Vulvodynia and the people who love them. The exchange of information and ideas is only shadowed by the opportunities to share one's pain or offer some words of compassion and hope. My deepest thanks, Frank Binetti.
CommentHas anyone heard of or tried tofranil? What about cymbalta or effexor? Thanks Holly
CommentHolly -- Cymbalta and Effexor are tricyclic antidepressants and can be used for depression or chronic pain problems. Tofranil can also be used for nerve related pain problems. My suggestion is to try to find a physician who specializes in pelvic disorders. The physician I found in the Chicagoland area is a Gynecologist only (not OB) who did her training at the University of Michigan at the Vulvar Pain Clinic. There are now a whole new breed of physicans going into sub specialties. If you find the right MD you can start working towards a solution to your problem. I do not know what kind of symptoms you have or how long but with an MD who is familiar with vulvodynia can help you find the right treatment options for you. I had a rough year but I was lucky enough to have a UroGyne who referred me to this specialist and my pain is now just a nuisance and I am currently weaning myself off of Elavil and quite successfully -- I feel like myself and I promised that if I ever felt better I would keep up with this website and try to help people ( I am a RN for 25 years). I hope this bit of info helps and keep striving to feel better -- NO ONE SHOULD SUFFER WITH THIS-- we may not be able to cure it but at least we can feel better and move on with our lives. Goodluck.
CommentTo Cheryl- Thanks for your input. I actually went twice to the vulvar clinic at the University of Michigan. They did diagnosis me with vulvodynia. I have tried elavil, neurontin and just this morning was given cymbalta. I hope to find relief soon! I also agree that this website is fantastic. It is so good to know that we are all not alone in this.
CommentHolly For lots of posts re women with itching try searching "vaginal itching without discharge or odor" and you come across a site which has tons of posts .x
CommentThanks Maddie!
Comment
CommentHello. I have had Vulvodynia now for 5 1/2 years. I somehow managed to get throug 2 pregnancies, and since the birth of my daughter (c section) a year ago, my pain has been awful Contstant burning. I take about 5000 mgs of gabapentin each day which is a pretty high dose. Wondering if anyone is up to that level of this med and if anyone has experienced side effects. The burning gets worse after I take the med in the evening and I am now having some bowel problems that appear to coincide with my dosing of the meds. Any feedback would be helpful. Also, has anyone had the surgery for Vulvoydynia - and if so, did it help and what was the recovery. Pain free days to all of you Vulvodynia sufferers!
CommentDorene, if you have the time read past Guestbooks and you will find several women who had surgerry ranging from removal of the glands, laser surgery to remove painful tissue and other surgical procedures. The results are mixed from what I remember. My wife had surgery to form a new scar in the area of her episiotomy (six o'clock position) where the skin was thinning and tearing. We waited almost two months while she healed and applied Estrace to the new scar. When we did resume relations the small papercut like tear reappeared. I think the success of the surgery depends on your specific symptom and cause. Best of luck.
CommentDorene- I sympathize with you... I was also on gabapentin and had really no relief either. Have you tried elavil? It really helped me but unfortunately I gained 20 lbs and had to stop it. I am currently starting cymbalta. I'm not sure if your referring to constipation issues? Make sure you are getting enough fiber in your diet. It can make a difference. Also, I highly suggest reading "The V Book" by Elizabeth Gunther Steward or "The V Zone".
CommentHi everyone, I have been dealing with vaginal burning for about 6 months. It is worse when I sit at work. I found a new OBGYN who says this is an uncommon but treatable condition. I am using testosterone 2xs a day and a low dose cortisone. I have used it for 2 weeks and she said it takes from 4 to 12 weeks to see a difference. Has anyone else been told the same thing? Thanks amzy .
Comment
CommentHello again, I am sorry - in my previous post i forgot to mention that my OBGYN said I have lichen scelrosis. I only have burning as does sue. Thanks
CommentHello again, I am sorry - in my previous post i forgot to mention that my OBGYN said I have lichen scelrosis. I only have burning as does sue. Thanks
CommentHello All! My name is Elaine, I posted here quite a few years ago. It's been some time, so a quick review of my back story: I had both my ovaries and uterus removed due to dangerous cysts and severe endomitiriosis in 2000, at the age of 32. Three months later, using pererin for HRT, I started having what seemed like yeast infections, but would involve the whole groin "fold" area from back to front. It would not clear up using OTC yeast creams, and when I went to the doc for a swab test, it came back negitive. The burning and itch did not go away, and so it began. I tried prescription yeast meds, dulifican, nystatin, switched hormones, tried an internal estrogen ring. I went to the nautopath, tested for food allergies, went off yeast and sugar, tried various strict food plans. I think I did try testosteone, cream, it made me break out in very bad cystic acne. Nothing seemed to make it come or go, there was nothing I could pin point as helping or hurting. The amount of creams I have is ridiculous, got to the point I was trying anything and everything. Lidocane was in there, I got up to a 4% on that. Tried amitriptiline and prescription anihistimine, those just made me sleep and turn into a zombie, the amitripline trial only lasted a week. I went to the doc every week, and had a great advocate in my PA, who helped me get a referral to the University of WA in the women's speciality department. It was a five month wait. When I got there, she examined me, looked at the glove, and said, oh yes, it's yeast. I was waiting for a wonder cream or super gel, but she said the best and least expensive treatment for me was boric acid in large capsules inserted into the vagina. I had already tried that, and told her, but she said I should use it continously for six weeks. When the paper copy of the yeast swab test came back, it said negitive for yeast. At my follow up with her, she said it is possible to have yeast that will not show up on the standard test. She gave me a list of some seven yeast "groups", and told me yeast creams and tests only work on and detect four of them. What I had she called "atypical yeast", and at this time, there was no cure. Since "most" yeast infections are able to be treated, there's just not enough money to research and find cures for the rest. This was at the University of Washington, and there was just no grant money to do this work. Use boric acid and a steriod/nystatin cream was what I got from them. I switched to bio-identical hormones (bi-est) in 2003, and this was a good improvement, but did not clear up the itching. (Side note: I am now, just in the last three weeks, having to change my hormone regimine because the FDA has outlawed one of the estrogenes I was taking, at the urging of Wyeth, the maker of premerin/prempro. If anyone else is going through this, they know I am talking about. Please, if you are still taking (or ever want to try) bio identical hormones, research this and let your congesspeople and senators know we want them to overturn the ban! There is a vote coming up to do so, and I can get back the estrogen replacement of my choice, the one I have used successfully for six years. My body is showing signs it is not as balanced as it has been.) But thankfully (or not thankfully) I had another episode of atyp yeast and anal irritation that started before this estrogen change. So no relation there. The reason I wanted to post here today is that I have suggestions for what I have used to treat myself. This is what I was looking for when I originally came to this site. I am not a doctor, just a woman who has had time to experiment and form her own ideas about what is happening to my body. I also want to say, prior to the hysterectomy, I was on antibiotics for severe cystic acne for about four years. I got yeast infections from them, and docs gave me a maintenance dose of nystatin pills to go along with them. I have noticed that there is a pattern of antibiotic use by the yeast infection women in this group. After the UW, I saw a dermatologist who took a skin biopsy, more in the anal area, but for me, the rash was top to bottom. What came back was a rare yeast/fungus (sorry, they couldn't even give me more info specifically) that was buried deep in the skin tissue. No one could tell me where it came from, but I had an idea: my vagina. That's why no matter what I put on top of the skin, the pain and itch were below the top layers, and not reached by the creams. The only thing the creams did was burn and damage my skin even more!!! Look closely at most anit itch, cortisone, steriod, you name it, one of the side effects can be: skin irritation. Lidocane and steriods, while helping the most, I felt were also the most damaging. The dermatologist put me on three months of lamisil (oral), the treatment for toe nail fungus! After the three months, it did clear, and I thought I was healed, but the "yeast infections" were still there. I could feel discharge come out, and could feel it burning where it touched. If I slept on my side, that side of my vulva where the discharge went had a rash. It wasn't alot, like not enough to wear a pad, but still present. It sounds strange to be able to describe that, but everyone who can not sleep because of this condition knows there is lots of time to think about this in the night. I read on these posts some years ago about a woman who used a tampon to prevent the discharge from burning her, and since you get to the place where you will try anything (and I lived there) I tried it, and it worked. Since I had a hysterectomy, I did not normally have much discharge, so when I could sense it, and feel the itch/burn, right away I used as small a tampon I could find, and could control the itch. And it worked. Then, I went further and inserted a boric acid capsule, then the tampon, and every few days, went some hours without the tampon to see if the discharge stopped burning. I could stop it within a week. For the last two years, I've had about two episodes a year, and controlled in within a week of using the boric acid/tampon combo. But, in late Aug I started itching (my previous episode was Feb 08). Started the boric acid/tampon, but after three weeks, it was still there. I started to worry, but also thought about what else to try. There is alot of talk about pro-biotics, and I have even ordered the expensive Japanese kind to help fight off yeast (didn't help, that I could track) some years ago. But it just came in my mind to try inserting some acidophilus (you know, the good stuff in yogurt, it comes in an OTC capsule form). I had used this some years ago too, taking it orally and vaginally, never could tell if it helped or not. I could control the itch by wearing a tampon, but I know I can't do that indefinitely. I opened the capsule, vaginally inserted it around noon, and was feeling less itching/irritation by that evening. I kept using it with a tampon. I was much better within three days, and now, a week later, I am back to normal. I have also been taking it orally as well, just to really spread it around. Why did this help? I don't know. My Personal Theories: Again, I am a simple woman, am not a doctor. These are just my personal thoughts about my story. Everyone is different. Please believe me when you read this: I know you are desperate. But have hope. In my case, because of the loss of my ovaries (in other people this could also be hormone imbalance for other reasons), the flora of my vaginal area changed and became imbalanced. Maybe because of my antibiotic use I was more suseptible, but some kind of "atypical yeast" took charge, and created an acid discharge that destroyed and imbedded under the dermis of the skin in my groin fold area. When I used yeast creams (that didn't work/wrong yeast), anit itch, cortisone, steriod, lidocane ect, for weeks and weeks, then months and years.... my skin became more and more damaged, and dependant on the topical cream/gel pain killers, that eventually stopped working at all because the problem was under the skin. The damaged skin became more open to yeast, and the cycle grew worse. What helped me: Healing the skin by stopping as much of the creams as I could, over time. (I try to use the creams as last resort, and used frozen paper towels applied in the groin or where you need them and open air as much as possible. Think of a wound, skin takes time to heal). Try natual topicals as much as possible, stay away from cortisone/steriod as much as possible. In conjuction with this, try keeping the discharge away from the skin with a tampon, as small as possible. Don't use super or anything like that, you don't need absorbing, only plugging. Boric Acid you can get over the counter, and you can ask the pharmacist for empty (the largest) capsules, or ask if he will fill them. I get mine from the doctor as a prescription, but it is OTC. If that doesn't work, try the acidophilus pill insert with tampon. For me, there must be two different floras that overgrow, as boric acid sometimes works, and now I can tell the acidophilus sometimes works. One of my docs was right, although I did not want to listen at the time, it's hard to tell what works when you're trying everything at once. I know the desperation makes you want to try anything and everything and NOW, but taking things slow does make sense. Most important is to listen to your body, just because some doc can not find your problem doesn't mean there isn't one!! All of us here are proof of that, it's not just you!!! Of course, all this is directed at the women who are having the yeast infection/itching/burning issue, not a muscle or nerve issue. I was tested for all that as well, and came up negitive for those kind of problems. I don't know if the infections will ever go away, but if I can at least maintain them, it's such a big improvement in my life. I just enourage everyone to keep trying, be good to yourself, and know you are not alone. I don't promise, but I also don't believe anything I suggested would hurt anyone, I don't think the doc running this list would allow that! Thank you to Dr.Glazer for keeping this list going, I myself have been reading and posting in it for seven years!! If anyone tries the Tampon Treatment with success or wants to contact me personally, please email me. Hi to Margaret in ID if you still read this list!! In Health, Your Friend, Elaine from Seattle
CommentHi again, sorry I forgot to mention in previous posting that my OBGYN diagnoised me with Lichen Sclerosus. I just dont have the itch (Thank God)-I have burning like Sue in her postings. Thanks Amzy
CommentTo Elaine- Did you have burning in the Vulva also? Thanks amzy
CommentAmzy, The sensations I had started as itching, like a yeast infection, then became just extreme irritation. I could have said it burned, or felt like a sunburn, but that was after time, and after using alot of yeast and anti-itch products/creams/gels that I now know did not work on the root problem, just masked the itch/irritation, and probably contributed. I did get checked specifically for Lichen S., but I did not have that. No doctor could tell me what I did have, all tests/swabs came back negitive, even from the UW. That's why I told my back story, it seems the women posting here have so many different histories and symptoms. I think the common denominator in many stories is that women are being told they don't have any "reason" for their symptoms. Just because docs cannot find the reason doesn't mean we don't feel it. That's what has made me all the more strong advocate for myself, and if it doesn't hurt me, even make myself my own test subject. I want to encourage everyone to keep advocating for themselves, and to share what I have found helped me. I hope to have a MySpace soon to reach more women, and see if I can get responses from anyone who tries successfully the Tampon Treatment. This is not going to work for everyone, as we have many different kinds of issues. In Health, Elaine
CommentTo ELAINE: Thanks so much for your reply. It is great to know other people listen. I guess I should be thankful my doc really listened to me and gave me a diag.. She drew a picture of the the Vulva to show me were I am paper thin. That being the main reason for my problem. I am not too bad today, but tomorrow will be another story because I have to go back to work. That is the time it is the worse. Thanks again, AMZY
CommentThis is for Amzy -- I feel your pain -- sitting was a nightmare for a long time it seemed. Couldn't sit on any of my furniture at home and work seemed to be worse. I did watch what I washed my clothes in -- I use All Free and Clear and I didn't wear tight clothing. I began using 5% Lidocaine Gel on the entrance to my vagina with a cotton ball also covered in a copious amount of lidocaine every night even during my period and have done so religiously for many months. After about 6 weeks I was 30% better, 10weeks time I was 60% better and in the mean time used a low dose of Elavil -- started at 10mg then went up to 40mg over time and by August of this year was 95% better and pain free when i didn't think about it. I am now off the Elavil and have had no problems -- but I did a slow withdrawal over several weeks and I still use the lidocaine but am thinking about experimenting with stopping gradual although my Doctor said I can use it for as long as I like with no ill effects -- I think now its more of me letting go but after the year of hell I have had I never want to go back. I am back to a regular diet exercise and life. Only thing I am afraid to do is ride a bike because even my Doctor said to be careful. So its not the worse thing. Only food that I see any difference with is Popcorn and to tell you the truth I could live without it. I hope whatever you do helps you. I have been trying to write in when I can to give people hope. I have a great group of Gynes that specialize in this in Chicago so if any one needs them I check in regularly. Goodluck
CommentTo Amzy: I've been posting since GuestBook Thirteen when my wife was diagnosed with Vulvodynia. She has a recurrent tear at the six o'clock position and had unsuccessful surgery years ago to repai muscles and forma new scar. The skin is thinned out in that area and although a biopsy for lichens came back negative, her current gyno says she has what looks like Lichen's Sclerosis. I think they are supposed to do a biopsy to make certain. I think sometimes they say it's Lichens because they don't know what else to say or do. There is a medication, ointment specifically to treat Lichens. My wife has used it but it did not help with the thinning skin or recurrent tear. Best of luck with your treatment. Frank
CommentWondering if anyone can tell me what symptoms you have with lichen sclerosis? I have often wondered if I have it, my gyno keeps telling me a biopsy will only show inflammation. I mainly have itching, some pain. All yeast tests have come back negative. I am currently waiting on results for an atypical yeast culture that was done a few weeks ago. Thanks, holly
CommentHolly, When I did look up lichen sclerosis I found I had most, but not all, the symptoms ( I do not have this). OB docs also told me the same thing about doing a biopsy, that it would only show inflammation. I was able to have a biopsy from a dermatologist, after swab after swab came back negative for "common" yeast. It was acctually the lab tech that did an additional test and found the yeast/fungus strain under the skin in my biopsy. Please let us know what you get back from the atypical yeast test, and what they offer as a treatment. In Health, Elaine
CommentI heard it called the "Keyhole syndrome" because the vulva narrows to that shape, here is a definition off the Internet. What are the symptoms of LS? The symptoms of LS are thinning skin, white patches of skin, itching and/or burning, painful sexual intercourse, and sores or lesions resulting from scratching. If left untreated, LS can result in fusing of the skin, atrophy, and narrowing of the vagina. A more detailed description is provided here. Please note that all of these symptoms may not be present. Some women do not experience itching, for example -- only pain.
CommentTo Cheryl: Thank you for all your information. Were you diag. with L S? I havent had my period in years so my condition is low hormones. I have considere lidocaine but I want to give the testosterone a chance to see it that works. Do you need a script for a doc. for lidociane? Thanks Amzy
CommentTo Frank B-- Frank, can you find out what ointment your wife used? I am praying that the testosterone 2x a day helps me. At this time it seems to be helping but only been on it for a little over 2 weeks. I have not been at work since Friday either. I will go back to work tomorrow, (tuesday) and see how bad it gets. Also, I am very 60 years old and have very low hormone levels. Thanks Amzy
CommentTo Amzy: My wife used many different ointments to try and repair the recurrent tear. Estrace was the first and she used it several different times with no success. A different gyno had me mixing three different ointments, Estrace, A testosterone called Androgel and something to stop itching , they burned but my wife used them for several weeks, no success. A couple of years ago her current gyno said she thought my wife had Lichen's and prescribed the clobesterone( spelling?), no help at all. Maybe it looks like Lichen's but is not? I hope you have relief, I really do but I think there has got to be more research. The doctors are just throwing meds at these symptoms in my opinion.
CommentTo Amzy: As a follow up my wife finished her chemotherapy treatments about ten days ago and will be starting radiation wed. which will continue for the next six weeks. They say you should stay close when going through chemo if you are feeling well enough. She had two urinary tract infections which were terrible and Even through she wants to have sex I see a raw spot on her clitoris and refuse to do anything that will make her worse. This is such a cruel illness. She has had raw patches of skin on her labia years ago when all this Vulvodynia started but that had gotten better.Then she had the raw spot on her clitoris, which also got better and now it's back! I'm hoping as the chemo works it's way out of her system and her immune system is back to normal that the raw skin will heal. I pray for all of you who suffer .
CommentHi Amzy -- no I do not have Lichen Sclerosis -- I was diagnosed with Vestibulodynia. You do need a prescription for Lidocaine. Good luck I hope you get better.
CommentTo Elaine and Frank- Thanks for the info on Lichen Sclerosis. I have to say I don't have thinning skin or white patches, but I do have itching and burning. My doctors just say it's vulvodynia. Although I seem to be getting a recurrent rash on the labia (hair area) that just won't go away. My yeast cultures came back negative. So now I'm thinking where do I go from here? Thanks Holly
CommentHolly, Your story is very familiar. I don't know if you are hormone comprimised, I know my itching problems started after having a hysterectomy, but I was suprised by how many women on this list have not had surgery. Do you notice if the labia rash is on the same side as the side you sleep? It was when I was trying the e-string internal estrogen ring that I realized how much my discharge was burning me. The ring increased my discharge, which was normally pretty low, because it's really a road to nowhere. I could then feel and connect the sensation of discharge with the burning feeling, like dripping acid. Lovely visual I know, but as in said eariler, the way I maintain myself is by keeping the discharge away from my skin with a tampon, while trying boric acid or acidophilus as an internal treatment. I also have anal irritation (for no known reasons, I have also had surgery to repair an anal fissure I developed for no obvious reasons, other than thin skin). When I went to have that checked a few weeks ago, they can find no reason for the irritation. When I ask the doc if low hormones could be the reason, creating thinning of the skin in that area, he said no, since you are on hormone replacement. He had no information about HRT, and didn't really understand that even with the replacement, I am always low on hormones. I have found that even though the genital area is fairly small, there are at least three different specialist docs for all the different parts, and they don't really work with each other. I went through a phase when I just wanted to find out what was wrong with me, I wanted a name. Even if there was no cure, I just wanted to know it could be identified. The not knowing is a big problem, it means not knowing how it starts, how it gets worse, what else could happen, and how to cure it, or at least what to try as cures! Frank is right, at the point you cannot be diagnosed is when docs will start to throw things at it to see what works. If it is not too personal, please let us know more about the atypical yeast test you will take, and what info you get about treating it. Amzy, I used lidocane myself, and it is a powerful pain relief, but it is not a treatment for the condition, only a mask. It numbs the skin to reduce the pain, and can have a bounce back effect that creates....skin irritation. I don't want to discourage you or anyone from using this treatment, but be clear it treats the symptoms, not helps cure the problem. Anyone can email me personally if they'd like to. In Health, Elaine
CommentElaine- Well here is my story...I had hymenectomy surgery back in November 2007. I woke up the next morning with itching, that over the next few months got worse and turned into raw irritated skin. Then came the pain. No one could give me any answers locally, so I was referred to the University of Michigan vulvar clinic. There I was diagnosed with vulvodynia, which explains the pain. They are puzzled as to why I have itching. I was just at my gyno last week and come to find out that she thinks that I was "burned" or "scarred" from the betadine used during my surgery. In addition, I found out the speculum they used was huge, and I mean Huge! So she thinks that caused my nerve damage. So now I'm on medication to manage the pain, but still am left with no answers for the itching. By the way, I did get my atypical yeast culture back and it was negative. In answer to your question, I tend to sleep on my right side. I have some discharge, but very little. I just feel like I'm not getting anwhere. I am unable (due to insurance reasons) to go back to the U of M clinic. I was only approved so many visits. Also, I am currently using elocon cream for the itching on my labia, which does help, but won't seem to clear it up. I did have a rash in the anal area too. That did clear up after a few months. So frustrating. Thanks for your input. Holly
CommentElaine- I also forgot to mention I have the rash on both labia. It is very heat sensitive, for example I can't go tanning and it bothers me the most sleeping at night. Holly
CommentTo Dr. Glazer: Thank you so much for this wonderful site. I hope it continues to be a great success. I have had some great advise from people on this site as well as your. Thank You Amzy
CommentTo All: Regarding HRT, I posted a few months back that my wife was diagnosed with breast cancer. The doctors said tests on the tumor confirmed it was "Estrogen Sensitive". I do not know if there is a test to determine if you are predisposed to this form of cancer, but please do not dismiss the risks of supplementing hormones. Prior to this health event I encouraged my wife to eat and drink Soy products to boost her Estrogen, now I feel guilty for making things so much worse. One other suggestion, if your doctor prescribes ointment(s) consider using one medication at a time. I think mixing all these chemicals can lead to confusion if you are sensitive to only one, furthermore think of all the extra work your liver, kidneys and body in general must do to process these things.
Comment
CommentTo all; Has anyone ever tried desitin for burning and itching. I know it isn't a cure but it does help.!! Amzy
CommentTO CHERYL: Did you put on weight with the elavil? And what exactly is this drug? Thanks Amzy
CommentHi all This is my first post. I have been diagnosed with vestibulitis 5 years ago. However, recently I have been experiencing hightened sensitivity in the clitoris. It is not painfull, but is bad enough for me to be aware of it all day and for it to be irritating me. Any ideas or advice?
CommentTo Amy: Just a couple suggestions regarding pain, sensitivity, or other discomfort of the clitoris. Avoid all soaps and use only water when washing this area. Use a mirror and plenty of light to see the clitoris and determine if there are any white spots, or raw areas. You need to see what is going on. One lady wrote in the GuestBooks that she had a pubic hair wound around the base of her clitoris and that had been giving her discomfort. My wife occassionally gets a raw patch of skin the size of the head of a pin on her clitoris. Unless she uses a mirror, she cannot see what the skin is doing. Don't depend on your gyno to always catch such things. My wife had a small papercut like tear that her gyno never saw until I pointed it out to him. He was unable to resolve the problem but it demonstrated to me that they may not take the time or simply do not look closely enough. Best of luck.
CommentTo Amzy -- Elavil is a tricyclic antidepressant which was one of the first generation of them. They are usually prescribed 100mg-150mg daily doses for depression, but has many side effects. Over the years it has been found that Elavil can have great effects on pain -- especially burning pain. They start at a low dose of 10mg and titrate up on a weekly basis until the patient feels relief. Common side effects are drowsiness and weight gain. You take this medication at night before bed. I didn't have too many problems and was up to 40mg and am now off. When all my troubles started I lost 12 pounds and over the months of using Elavil -- I gained it all back -- I thought it was from the elavil but I have been off now for about 2 weeks and nothing seems to be moving so maybe the weight came back because I wasn't so upset, anxious and nervous anymore. I think I need to give it more time to see if I lose. I am exercising regularly and I do watch my diet -- but I am not on a serious diet. I think the Elavil helped me in a lot of ways -- even though it was a low dose it really helped my emotional state and helped me to sleep. I was so upset that I didn't sleep well for months and I also had a case of irritable bowel which I had checked out and was all due to stress. I am sleeping fine now and everything seems better -- it was such a low point that I feel on top of the world now. I am still aware of "down there" and have some minimal irritation but some days I don't even notice it and if I do I try to forget about it because I know what it is and it won't kill me. I was so scared for so many months that finding the right MD who listened and believed me, using the Lidocaine 5% gel and adding the Elavil for almost 6 months got me back on track. Good luck -- go see a good MD.
CommentHello everyone I am so glad to have found this website - it is nice to know I am not crazy or suffering alone. My story is that I am 26 and have had vuvlodynia for a year. I was on antibiotics for acne for numerous years (at least 5) as well as many different topical antibiotics for acne; I have had no major injuries anywhere on my body; I have tried almost every form of birth control under the sun (I was on the Depo shot from the age of 16); and I experienced recurrent but easily treated yeast infections over the years. After I began sexual relations with my current partner, this pain and irritation suddenly reared itself, which of course caused me to think he had given me some sort of STD. After multiple STD tests done numerous times, as well as the requisite negative yeast cultures, I realized not only that I had something far more elusive and fundamentally different from an STD, but that I also needed to see a specialist since my doctor admitted that my problem went beyond his expertise. After waiting 6 months to see the gynecologist (yes that's how long the wait is in Canada - gotta love free but inefficient healthcare) she told me I simply had a tight vaginal/pelvic floor muscle. I went back to her to say that I didn't think that a muscle was the only issue - would a simple tight muscle cause external burning and itching and all the rest of it? It didn't make sense. She told me to read "The V Book" (as I've seen mentioned on this guestbook already) and to come back to her with any relevant info that fit my symptoms. I found the book extremely helpful and beneficial, even though in essence I felt that I was diagnosing myself and doing the doctor's legwork for her (good thing she is free after all!). But she agreed when I came back to her after reading the book that I likely had vulvodynia, and I told her I wanted to try amitriptyline to see if it would help. After some terrible bowel issues, I have now switched to nortriptyline. I have to say, the antidepressants, at the lowest dose possible, have greatly reduced the burning I used to experience after intercourse. I should perhaps quickly digress to tell you what my exact symptoms included: it all started with a small area that burned just inside the right labia majora, along with swelling and redness that was exclusive to the right external side only. It slowly worked its way up the right vaginal wall, and the bone in the right pelvis began to ache quite badly. Somehow the pain spread into the left and became more internal than external. All along, the symptoms varied between burning, itching and aching. Now that I have started the antidepressants, the pain has migrated directly into the clitoris and deep in the left front vaginal wall. I feel relief that I can now pinpoint exactly where the pain is coming from, since before I could not tell what or where was burning or hurting. I have to point out that I have never had a sore or bump that arose because of this condition - any time any skin problems arose, they were as a direct result of prescription creams I was applying to help ease the problem. For example, the Xylocaine I was prescribed for the clitoral pain caused a pimple - which in turn caused so much increased anxiety and worry, I finally realized it's not worth it to put on such strong creams if they only exacerbate the problem. I'd rather live with the pain. I also should mention that I had a real fear that I had some atypical form of herpes, since I had the burning and redness associated with herpes, but I have never had a lesion appear - and in Canada there are no blood tests available for herpes. I had to let go of this fear (though granted it's still in the back of my head) when the 100th swab done came back negative and the doctors began to wonder if I wasn't some sort of crazy that was always hysterical with this fear of herpes! All in all, my symptoms are moderate compared to some of the stories I have read on here. I am still able to go about my day, every day - the pain is never bad enough to stop me from getting out of bed or anything. I am still able to have intercourse with my boyfriend (who thankfully is pretty understanding about this issue) albeit not nearly as much as he would like. I guess the main reason I wanted to write this is to ask: have any of you heard of physiotherapy for pelvic pain? My gynecologist shares her office with a physiotherapist who specializes in pelvic pain (as well as continence issues). This is not simply an external exercise - she does both external and internal work to help with vulvodynia. She tells me she has many patients that she helps with this problem. I think she has really helped to release any tight muscles that might have been worsening things further, as well as getting my pain to localize in the one or two spots. She says she has done this for many women. The experience is not overly painful for me to go through, I just experience a little irritation afterwards. I encourage any of you to seek out a physiotherapist who specializes in pelvic pain if you can find one - for me it has helped, although as I said before, my symptoms seem moderate compared to some other women. The other route I have taken in regards to healing is the naturopathic one. My naturopath seems to think I have a Candida (yeast) problem due to my long-term antibiotic use, one that does not show up with vaginal cultures. Perhaps I have an atypical yeast; at any rate, the diet I was put on at first was very restrictive - but it is better for overall health anyway - and I have to say, the discharge I once had has dramatically been reduced. But who is to say that this is not due to the antidepressant use or the physiotherapy? I have no idea what the discharge may have been related to, but now that I eat no yeast, low sugar, little dairy, no red meat, very little alcohol, etc. it seems to have dried up, for the most part. Also the naturopath advised me to take probiotics (good for you anyway) as well as fish oils and a container of Candicin (gets rid of yeast). I also plan to start digestive enzymes, which are said to help eliminate toxins from your body by enhancing the digestive process. Of course, these things could help with any disease - but they will not likely hurt in the quest for healing. For me, all those different creams I was prescribed seriously exacerbated my problem - not to mention, the more topical creams you use, the more your liver must work to filter them from your body, thereby distracting it from filtering out what might actually be causing the problem. Of course, I understand some women cannot live day-to-day without these creams, and probably most women don't have the skin issues I have - ie getting pimples and ingrown hairs from the creams. I am very glad I can live without these creams as I have completely abandoned them, and I am weaning myself from the topical antibiotic face creams as well. The last thing I want to say is that it can't hurt to get rid of all chemicals you use to clean your home, especially the bathroom. There are great natural alternatives available in health food stores. There are of course hundreds of little tricks one can employ to ensure that everything is being done to ease the problem - I'm not an expert. But I do know that for me, the combination of the antidepressant nortriptyline, the physiotherapy, and the dietary/lifestyle changes have all helped to both diminish certain symptoms and to alter the pain to a more recognizable, and therefore not as anxiety - inducing, state. My next plan is to try biofeedback - I will post on here again after I try it with my results. If any of this helped at least one person reading this - I am glad I wrote it. It has helped me immensely! Good luck on the quest for health.
CommentHello everyone I am so glad to have found this website - it is nice to know I am not crazy or suffering alone. My story is that I am 26 and have had vuvlodynia for a year. I was on antibiotics for acne for numerous years (at least 5) as well as many different topical antibiotics for acne; I have had no major injuries anywhere on my body; I have tried almost every form of birth control under the sun (I was on the Depo shot from the age of 16); and I experienced recurrent but easily treated yeast infections over the years. After I began sexual relations with my current partner, this pain and irritation suddenly reared itself, which of course caused me to think he had given me some sort of STD. After multiple STD tests done numerous times, as well as the requisite negative yeast cultures, I realized not only that I had something far more elusive and fundamentally different from an STD, but that I also needed to see a specialist since my doctor admitted that my problem went beyond his expertise. After waiting 6 months to see the gynecologist (yes that's how long the wait is in Canada - gotta love free but inefficient healthcare) she told me I simply had a tight vaginal/pelvic floor muscle. I went back to her to say that I didn't think that a muscle was the only issue - would a simple tight muscle cause external burning and itching and all the rest of it? It didn't make sense. She told me to read "The V Book" (as I've seen mentioned on this guestbook already) and to come back to her with any relevant info that fit my symptoms. I found the book extremely helpful and beneficial, even though in essence I felt that I was diagnosing myself and doing the doctor's legwork for her (good thing she is free after all!). But she agreed when I came back to her after reading the book that I likely had vulvodynia, and I told her I wanted to try amitriptyline to see if it would help. After some terrible bowel issues, I have now switched to nortriptyline. I have to say, the antidepressants, at the lowest dose possible, have greatly reduced the burning I used to experience after intercourse. I should perhaps quickly digress to tell you what my exact symptoms included: it all started with a small area that burned just inside the right labia majora, along with swelling and redness that was exclusive to the right external side only. It slowly worked its way up the right vaginal wall, and the bone in the right pelvis began to ache quite badly. Somehow the pain spread into the left and became more internal than external. All along, the symptoms varied between burning, itching and aching. Now that I have started the antidepressants, the pain has migrated directly into the clitoris and deep in the left front vaginal wall. I feel relief that I can now pinpoint exactly where the pain is coming from, since before I could not tell what or where was burning or hurting. I have to point out that I have never had a sore or bump that arose because of this condition - any time any skin problems arose, they were as a direct result of prescription creams I was applying to help ease the problem. For example, the Xylocaine I was prescribed for the clitoral pain caused a pimple - which in turn caused so much increased anxiety and worry, I finally realized it's not worth it to put on such strong creams if they only exacerbate the problem. I'd rather live with the pain. I also should mention that I had a real fear that I had some atypical form of herpes, since I had the burning and redness associated with herpes, but I have never had a lesion appear - and in Canada there are no blood tests available for herpes. I had to let go of this fear (though granted it's still in the back of my head) when the 100th swab done came back negative and the doctors began to wonder if I wasn't some sort of crazy that was always hysterical with this fear of herpes! All in all, my symptoms are moderate compared to some of the stories I have read on here. I am still able to go about my day, every day - the pain is never bad enough to stop me from getting out of bed or anything. I am still able to have intercourse with my boyfriend (who thankfully is pretty understanding about this issue) albeit not nearly as much as he would like. I guess the main reason I wanted to write this is to ask: have any of you heard of physiotherapy for pelvic pain? My gynecologist shares her office with a physiotherapist who specializes in pelvic pain (as well as continence issues). This is not simply an external exercise - she does both external and internal work to help with vulvodynia. She tells me she has many patients that she helps with this problem. I think she has really helped to release any tight muscles that might have been worsening things further, as well as getting my pain to localize in the one or two spots. She says she has done this for many women. The experience is not overly painful for me to go through, I just experience a little irritation afterwards. I encourage any of you to seek out a physiotherapist who specializes in pelvic pain if you can find one - for me it has helped, although as I said before, my symptoms seem moderate compared to some other women. The other route I have taken in regards to healing is the naturopathic one. My naturopath seems to think I have a Candida (yeast) problem due to my long-term antibiotic use, one that does not show up with vaginal cultures. Perhaps I have an atypical yeast; at any rate, the diet I was put on at first was very restrictive - but it is better for overall health anyway - and I have to say, the discharge I once had has dramatically been reduced. But who is to say that this is not due to the antidepressant use or the physiotherapy? I have no idea what the discharge may have been related to, but now that I eat no yeast, low sugar, little dairy, no red meat, very little alcohol, etc. it seems to have dried up, for the most part. Also the naturopath advised me to take probiotics (good for you anyway) as well as fish oils and a container of Candicin (gets rid of yeast). I also plan to start digestive enzymes, which are said to help eliminate toxins from your body by enhancing the digestive process. Of course, these things could help with any disease - but they will not likely hurt in the quest for healing. For me, all those different creams I was prescribed seriously exacerbated my problem - not to mention, the more topical creams you use, the more your liver must work to filter them from your body, thereby distracting it from filtering out what might actually be causing the problem. Of course, I understand some women cannot live day-to-day without these creams, and probably most women don't have the skin issues I have - ie getting pimples and ingrown hairs from the creams. I am very glad I can live without these creams as I have completely abandoned them, and I am weaning myself from the topical antibiotic face creams as well. The last thing I want to say is that it can't hurt to get rid of all chemicals you use to clean your home, especially the bathroom. There are great natural alternatives available in health food stores. There are of course hundreds of little tricks one can employ to ensure that everything is being done to ease the problem - I'm not an expert. But I do know that for me, the combination of the antidepressant nortriptyline, the physiotherapy, and the dietary/lifestyle changes have all helped to both diminish certain symptoms and to alter the pain to a more recognizable, and therefore not as anxiety - inducing, state. My next plan is to try biofeedback - I will post on here again after I try it with my results. If any of this helped at least one person reading this - I am glad I wrote it. It has helped me immensely! Good luck on the quest for health.
CommentHello everyone- I have been posting here for a while now and just wanted to ask you all a few questions... For those of you who have itching, what to you do or use for relief? I can't seem to find anything to help. All of my tests for yeast have come back negative, even for atypical yeast. Also, does anyone stay away from eating or drinking certain things like tea, pop or chocolate? I researched the low oxylate diet, but I find it somewhat confusing. Also, I was taking probiotics, but the specialist I saw at the U of M advised me to stop them????????? Didn't make any sense to me. I was told you should take them like candy. Any advice would be great! Thanks Holly
CommentTO HOLLY: Have you ever tried desitin? It has been used for years for diaper rash and skin irritations. I use it for the vaginal burning I get. It does help. amzy
CommentI am testing that the guestbook is still working as there have not been any posts in a few days. The vulvodynia website remains under construction and is expected to be complete by mid October, 2008. Thanks for your patience while we undergo these changes. Howard I. Glazer Ph.D. vulvodynia.com
CommentDr.Glazer, the problem is not your wonderful site, but I have a few ideas. I have been reading and posting here for several years and in that time I have not observed any meaningful breakthroughs in the treatment of cure of the various symptoms of Vulvodynia. Lichen's is still said to be possibly autoimmune in nature and Elavil is the best that can be offered to these sufferers. Where is the true research to discover the causes and actually treat the problems? I am not blaming you or the other caring doctors who treat thee women, but I am frustrated and upset that the medical community has drugs and procedures to address erectile dysfunction but nothing on an equal level for Vulvodynia. Genetic research, stem cell treatments and the other modern day scientific tools are for some reason absent, instead Estrace is prescribed for thinning skin that is not the result of low estrogen. Medication after unnecessary medication is prescribed and these women continue to suffer, get frustrated and depressed as they wait and hope for a miracle. Read the posts and shake your head as you understand their situation. Imagine that the best they can do is apply lidocane, desitin and ingest antidepressants! My wife has finished her chemotherapy for breast cancer and we are hopeful she is free from this life threatening illness, but we cannot enjoy and share in the intimate pleasures of a couple in love. She has a raw patch of skin on her clitoris and although we have not have sex in months she still tears at the six oclock position. No answers, no treatment, no hope! I don't suffer from erectile dysfunction but if I did there are efective medications and other treatments. Why is Vulvodynia, Lichen's and all the other unknowns not agressively pursued with all science has at it's disposal? Dr. Glazer, these women need more than what is currently available and as a man who loves his wife and loves sharing in intimate pleasure and giving intimate pleasure I am suffering my own hell. What about the next generation of sufferers? When does this nightmare end?
CommentTO FRANK B. YEAH! I couldn't have said it better. Each night I watch the t.v commercial's about E D and all the research that has been done, all the money spent and women who suffer like this get overlooked. Women who are afraid to pee, who cry themselves to sleep, who feel alone. WHY can't we get some answer's. Amzy
CommentAmzy & All: I've wondered the same thing for years. Is the answer sexism, that the same effort and money is not invested in curing women? I don't buy that the subject is too private and sensitive because erectile dysfunction is all over the tv and Oprah has done several shows about sexuality and women's problems. I'm concerned because I'm selfish and thinking about my frustrations, I'm thinking about my relationship with my wife and all we have lost. I'm also concerned because I'm the father of two daughters and if this thing is genetic they are next in line to suffer! Read through the past Guestbooks and be amazed at some of the home remedies women have tried to releive their discomfort and pain. Crisco, vanicream(vanishing cream!), bag balm, bag of frozen peas. Can you imagine a doctor suggesting these things to a man? There has got to be a scientific answer for each and every symptom beyond an office yeast test and all the other tests that fall far short of real answers. I can't blame the doctors because they are not research scientists and only have so much information to work with in diagnosing and treating. Why not a blood test to isolate genetic links? First there must be genetic research and to my knowledge this has not happened. Are there just too few sufferers? My wife's breast cancer is estrogen sensitive and Estrace did not help her Vulvodynia and may have added to her cancer. I think it's disgraceful that years have gone by and women are being prescribed antidepressants to "reduce nerve inflamation" rather than symptom specific treatments. I repeat I do not mean my upset to be an attack towards the doctors. Someone just does not care to take this to a place where it needs to go and I can't understand why.
CommentFrank, you are right on. I really think this condition is not recognized enough. I have read several books on the subject of vulvodynia and it seems the majority of the treatment is all speculation. I recently went to the University of Michigan vulvar clinic, which today is known around the world. After leaving I felt like nothing was explained to me. It was like "You have vulvodynia, we want you to try elavil". Thank God I had done my research and new ahead of time what it was. I also believe there needs to be more awareness. When I tell people what I have they say "what is that?". So frustrating!
CommentFrank, you are right on. I really think this condition is not recognized enough. I have read several books on the subject of vulvodynia and it seems the majority of the treatment is all speculation. I recently went to the University of Michigan vulvar clinic, which today is known around the world. After leaving I felt like nothing was explained to me. It was like "You have vulvodynia, we want you to try elavil". Thank God I had done my research and new ahead of time what it was. I also believe there needs to be more awareness. When I tell people what I have they say "what is that?". So frustrating!
CommentTo Holly: I've written a post similar to this several times over the years. I don't know if it's a woman thing but I noticed that some subjects either annoy women or possibly disturb them to a point that they avoid the subject and or person. I noticed this with a woman I met at a gym years ago. she was going through a difficlut divorce and I'm a good listener so I was always happy to let her vent. Her good friend on the other hand started to distance herself and it wasn't that she was bored by the converstation, it was alomost as if the subject was so upetting that she didn't want to imagine it happening to her. Almost as if she was going to "catch" a divorce. Now imagine all your female friends and relatives who have no pain, itching, burning, tearing problems and begin to understand the ordeal you and the other ladies here must endure? It's kind of like "Please don't tell me anymore, I just don't want to know". I totally agree with you that aside from the medical community dropping the ball on research, we have the public kept in the dark. I f there are public figures suffering from Vulvodynia and I believe there must be they are certainly keeping quiet! Myself and others have written to Oprah and others repeatedly in the hopes of having a good program aired on Vulvodynia, but results have been disappointing. Our society in general views discusion of sex or genitalia as rude. You can curse and use all sorts of profanity without offending some folks but say the word Clitoris and they fall apart. How do you/we expect awareness, compassion, research if you can't even discuss the problem? I'm glad elavil is available to relieve pain, but if that's the best an expert on Vulvodynia or a University can offer something is very wrong. How many more years will this illness or combination of illnesses or conditions be ignored? How many more women will suffer?
CommentTo Frank- When I was first diagnosed with vulvodynia, I didn't want anyone close to me to know. Ofcourse my husband did, but I kind of felt like it was a personal thing. I'm to the point now that I really don't care who knows, because I kind of feel in a way that it's my obligation to spread awareness. I think back to my last visit with my gyno. I told her what the U of Michigan diagnosed me with and it was like no big deal. To me it is. I don't know if you've checked out the NVA's website, but I recently got an email that Oprah was going to do a show on vulvodynia. It's been several months and I haven't heard anymore. Well, best of luck to you and your wife. Holly
CommentTo Frank- When I was first diagnosed with vulvodynia, I didn't want anyone close to me to know. Ofcourse my husband did, but I kind of felt like it was a personal thing. I'm to the point now that I really don't care who knows, because I kind of feel in a way that it's my obligation to spread awareness. I think back to my last visit with my gyno. I told her what the U of Michigan diagnosed me with and it was like no big deal. To me it is. I don't know if you've checked out the NVA's website, but I recently got an email that Oprah was going to do a show on vulvodynia. It's been several months and I haven't heard anymore. Well, best of luck to you and your wife. Holly
CommentHas anyone tried topical Gabapentin (Neurontin)? I take the oral form of Gabapentin, 1500mg a day. It does help the extreme soreness, especially since I have to sit all day at work. I have had extreme vaginal soreness as well and it helps that too. Also, I have a lot of hypersensitivity pain in that area, boy that is painful. I wish I didn't have to be on any med., but I would rather be on it then just existing. I think Gabapentin is a decent medication. It causes me to have bad sinus trouble but am trying to take stuff for that to help. I had wondered if anyone tried the topical version of this. I would hate to have to keep putting stuff on my skin (besides lidocaine) and it seems like the pain is a little deeper than just the surface, so I feel that the oral form is better is my guess. I should try it though. I can add it to my list of 100 things I have tried!
CommentCassandra: I use a topical preparation of Gabapentin: 6% in a base of Aquaphor ointment and almond oil. At first, I used it at the vestibule, but that wasn't working for me. Now I use it on the perineum and anus, and that works better. I have found as my healing progresses that the nerve pain moves around because the pelvic floor tension moves around. The main benefit of topical vs oral use of this drug is that topical application puts the drug exactly where it is needed, and there are no systemic side effects. I get this preparation from a compounding pharmacy in California (I live in VA). If you want more info, contact me directly.
CommentHi all - I have had vulvodynia for four years. I tried Elavil, and it worked for a while but made me so tired. I did not gain weight, however I went from 10-90 mg and kept having to increase it every few weeks to ensure it worked. I finally quit cold turkey, which was probably not a good idea but I left the meds home one weekend away and just never started again. Nothing else seemed to work at all, and I suffered from horrible pains in my legs, pelvic area, inside and out of the entire vaginal region. I started blending greens with flax and yogurt and the pain that radiated down my legs went away completely within two weeks. However, it intensified in the vaginal opening, most probably due to the oxalic acid in all the green veggies. I next tried myofascial release therapy, and finally found incredible relief after a few sessions. I have been going for months now, and feel almost completely healed. Unfortunately, I had to take a few weeks off, and now I have some symptoms back. I am hopeful when I return next week, they will subside again. I also noticed and read that drinking black tea can increase your pain. It is very true with me. One more word of advice, although it is long and time consuming, if you are new to this site, it can be very helpful to read past guestbooks and find what worked for others, as that is how I found my help and resources.
CommentI've been diagnost with vulvodynia 8 years ago,during this years I've tried diffrent treatments but not improvement at all.My symptoms are pain on the vestibule all the time ,pain on the intercourse,discomfort urethrally like burning sensation,redness and sorness on the vestibule,heavy white discharge all the time. Treatment given Amitriptyline,Gabapentin,Lyrica,Xeristar,Tramadol,Trimovate cream,biofeedback techniques using Dr Glaser instrument,dilators.In April I had a Pelvic sympathetic nerve block injection.My consultant she wants to try a botox injection now .I would like to know if anyone had a botox injection for this condition and what was the outcome.I don't know what to do because it's seams that nothing works for me I am very deprest I don't know if I will get better and be able to have sex with my husband in the future. I live in London if anyone knows a good consultant to help me please let me know.XXXX
CommentAnn, I just received a note from my Dr. asking what I've heard about the gabneurotin (spelling) topical. He included a study he found showing some success from this. I was wondering... how did you begin the process of having it mixed to fit your needs? Is the pharmacy in California the only one that makes it? I feel very fortunate to have a Dr. who doesn't pretend to know all the answers, but is willing to listen to all my questions.... thanks
CommentI have posted here several times now and just wanted to let everyone know I am having good success with the drug cymbalta. I previously tried elavil and neurontin with little success. With cymbalta I felt relief from pain within 2-3 wks. It has also helped to somewhat calm down my itching too. I still have the itching, but not everyday like I did before. I take 60 mg a day. One side effect is nausea, but that went away after 2 wks. It is also an antidepressant. A lot of women use if for fibromyalgia.
CommentI have posted here several times now and just wanted to let everyone know I am having good success with the drug cymbalta. I previously tried elavil and neurontin with little success. With cymbalta I felt relief from pain within 2-3 wks. It has also helped to somewhat calm down my itching too. I still have the itching, but not everyday like I did before. I take 60 mg a day. One side effect is nausea, but that went away after 2 wks. It is also an antidepressant. A lot of women use if for fibromyalgia.
CommentHolly, Is nausea the only side effects you have from cymbalta. What mg did yo start with. Or did you start with 60 mg immediately. Please let me know more how you started. I am afraid of side effects because I heard it is a hard drug. Thank you. I have two friends who are doing sooo well on it as well.
CommentTO SUSAN- For me nausea was the MAIN side effect. I have to be honest and say it does cause insomnia. That side effect was not listed in the pamphlet, but upon further research I did discover it. Yes I did start out at 60 mg. That is the recommended amount for most people. My main concern was weight gain (with elavil and neurontin). That is not a side effect of cymbalta. When I went to the U of Michigan vulvar clinic, they did not want me to try it and said " that won't help you". I talked further with my gynecologist locally and she agreed it was worth trying. I have been on it for a month now and am grateful to have relief. Actually, a previous poster who had two friends on cymbalta recommended it to me. They have also had great success. My understanding is that there is no generic for this drug, so I end up paying a high copay. I'd rather do that than be in pain! Feel free to email me if you would like. Best of luck....Holly
CommentTO SUSAN- For me nausea was the MAIN side effect. I have to be honest and say it does cause insomnia. That side effect was not listed in the pamphlet, but upon further research I did discover it. Yes I did start out at 60 mg. That is the recommended amount for most people. My main concern was weight gain (with elavil and neurontin). That is not a side effect of cymbalta. When I went to the U of Michigan vulvar clinic, they did not want me to try it and said " that won't help you". I talked further with my gynecologist locally and she agreed it was worth trying. I have been on it for a month now and am grateful to have relief. Actually, a previous poster who had two friends on cymbalta recommended it to me. They have also had great success. My understanding is that there is no generic for this drug, so I end up paying a high copay. I'd rather do that than be in pain! Feel free to email me if you would like. Best of luck....Holly
CommentI buy all my UK food Grade Hydrogen Peroxide from www.food-grade-hydrogen-peroxide.co.uk its wicked!!!
CommentHi everyone, I am new to this site and hope someone takes the time to read my story. This is the first time I have written, although I've been reading for over 6 months. I am so happy to know I am not alone. I am 24 and my problem started about 8 months ago. I'm sorry this is long... I got my wisdom teeth out in Jan 2008 and was on amoxicillin 3x a day for a month due to complications with my teeth. I had yeast infection after yeast infection..also a bladder infection I never properly got treated until a few weeks ago..the bladder infection and yeast infection were both recurring for months..I have been getting uti's since I've been 19. I probably had used Monistat cream at least 5-6 times for full tx's, meaning 7 nights of application each tx. I've had this vag. burning ever since Feb. It went away for about a month and half and now has been back all week. I had been taking Macrobid everyday to get rid the chronic bladder infection....but even when there was a month when I hadn't taken any yeast tx/antibiotics it didn't go away. Luckily, I am able to have sex which mostly just hurts on initial penetration but then feels better. I feel for the women who aren't even able to be intimate with their partners. I've only had 8 months and I'm at my wits end. I am praying for all of us..EVERYDAY... Anyway, my plan is this...discontinue all antibiotics (my last macrobid was about two weeks ago) stop drinking soda (which I did everyday, sometimes two cans) and start drinking water and just pray that my body gets better. I just wanted to know what everyone though of my situation....Thank you for any advice or input you have. Brooke
CommentTo Brooke- It sounds like your problem might be due to the long use of antibiotics, like you thought. Those can cause yeast infections alone. I've heard that when taking antibiotics you should also take probiotics along with it. Some say you should take them like candy. Some tips to use: Rubbing ice over the vaginal area can provide a lot of relief. In the past I have taken a cool oatmeal bath, like aveeno. Different things work for different people. Have you been checked for vulvodynia? Some of us have pain with initial "entrance" during sex. Personally, I tend to shy away from using creams like monistat. But that's just me. Well, let us know how your doing. Best of luck....Holly
CommentHolly, thanks so ,much for replying to me. In wish you all the best in your continued healing and your continued sharing in helping all of us who suffer from this disease. For BROOKE: A lot of us who suffered from interstitial cystitis and vulvodynia stemmed from overuse of antibiotics and birtrh control pill.. Go figure. Once our tissue and cells are damaged and our immune system is at stake due to too much antibiotics, it is not easy to normalize our body. So most of us just rely on prescription drugs, like antidepressant and anticonvulsant to relieve pain and most of the time they help. Good luck. STOP ANTIBIOTICS USE. Try natural healing.
CommentI am 21 years old and have had vaginal problems for the past year. It started out by having to take antibiotics that caused a yeast infection. My first one ever. So I got an over the counter yeast infection medicine and had an extreme allergic reaction to it. ( I cant remember which one it was) Ever since then sex has been unbearable. It feels like he is ripping me open. I was treated with metradinazole countless times for overgrowths of bacteria and treated for PID as well. Nothing seems to work. My papsmear comes back normal and a bacterial swab (which feels like I am being cut open with a razor blade when I have it done) only showed up Strep B which I heard dosent do anything to your vagina. I recently went to the gyn and she said I had vulvodynia. I researched and I know this is what I have. I found this site and read some of your stories and just burst into tears because it sounds so much like what I am going through. I am so stressed out and depressed over this. I cant have sex with my fiance at all it hurts so bad. I cry whenever I even talk about my vagina because I am so frustrated. I have had doctors make me think like it's all in my head. I had one gyn who gave me some vaginal sponges and said that would help with painful sex. I dont know what to do. I have to figure out my insurance issue before I can get treated (no insurance). I feel like I will never be able to have sex again. I dont even feel like a woman anymore. My faith has been shattered. Can someone explain to me exactly what this is? Is it neurological? Is there any home remedies to do untill I can get some medical treatment? If anyone can reassure me that I will get better would be greatly appreciated. Thanks.
CommentTo Kate: Just in case the women are slow in responding, Welcome to the Forum. I have a daughter who will be 21 in Feb, so as a Dad I am sorry for your physical and emotional pain. If you take some time and read past Guestbooks you will come to understand the many personal journeys these women have taken in a quest for answers. Problem with "Vulvodynia" is that not much scientific research has been done and it remains a mystery. Possible causes for symptoms which include pain(with or without sex) burning, itching, discharge, thinning of the skin and tearing, recurrent yeast and or urinary tract infections. Good news is that you are young and where there is life there is hope! Since this is a very difficult topic for people to discuss it has takne time to gain attention, but stay strong because we are getting there. All we need is more media exposure and there is talk that Oprah may finally do a show on Vulvodynia. If I can make some suggestions without sounding like a creepy old man, give yourself a break. Don't even try and have sex for a while because the more you try and experience pain the worse it will be. Only wash with water (no soaps or anything else) on your genital area. Wear only cotton underwear, eat healthy foods, drink plenty of water and rest. Give your body a chance to heal. If you see another gyn and are given medication such as ointments to apply, do so sparringly. Some of the women here, my wife included have been give three or more creams to apply at the same time. Getting back to the issue of sex, some women are allergic to latex condoms, some women have an allergic reaction to semen which can cause burning and throw off the ph balance of the vagina leading to a yeast infection. There is a lot to learn and as I've suggested the past Guestbooks are agood place to start. Please take care of yourself and think positive.
CommentThanks Frank. You dont sound like a creepy old man. Its nice to see a man who is interested in his wifes disease (is disease a word I should be using to describe this) The gyn I saw yesterday who told be about vulvodynia said I would get better but this seems like a lifelong disease. My fiance has been wonderful he has never ever gotten mad or disgusted that I cant have sex. Sometimes that is hard to deal with in itself because I am the type of person who dosent like help and does everything on her own. I am very thankful for him though. I just want to be back to the person I used to be. We have stopped trying to have intercourse so my vagina is less irritated. This has turned my whole life upside down. Having a problem with my vagina makes me feel dirty. Atleast I found this site. Do you know of anything like a home remedy I can do for now?
CommentTo Kate: "Home Remedies" abound when dealing with some of these symptoms. Women have used all sorts of things to help with pain associated with burning such as Crisco, a bag of frozen peas used as a cold compress, if there is stinging after urinating some carry a water bottle with a pop top to flush the area. Call it a disease, illness, condition or anything else but it is real. I have been supportive of my wife's "condition" but don't pin any medals on my chest. Loving someone and not being able to make love is a very frustrating thing to live with and for me it has not gotten any easier. I am disappointed with the medical community because there has been all sorts of research and money spent on erectile dysfunction but the best the can offer for Vulvodynia sufferers is antidepressants. My message to you must seem confusing but this is very complicated. I want you to be hopeful, agressive when it comes to your health and at the same time realistic that things may not change for a while. Women are victims of years of false advertising and the ignorance of men which has lead to all sorts of misinformation and wrong thinking. The Vagina is not dirty even is it is having issues, you are not defined by your Vagina. If you do read past Guestbooks you may come across a post in which a young woman said she was thinking about marriage although she and her husband to be could not have sex. I responded honestly as if speeaking to my own daughter, I told her that I thought she would bi in for trouble because a man's sex drive can be unrelenting even if he thinks he has control. I know there are couples who deal with not having sex and do just fine, I was speaking in general terms. Women here have tried homeopaths, naturopaths, and all sorts of therapies in a quest for relief. My advice would be to give your vagina and mind a rest and if you do want to try something out of accepted medicine be careful. Regardless of the illness, there are bad people trying to take advantage and they will promise relief and cures which they cannot deliver. Read past Guestbooks, good luck.
CommentTO KATE: I sympathize with you. I've had vulvodynia for almost a year now. When I read your post it reminded me how I felt back in the beginning. I know things may be hard right now, but over time if you can find what works for you, you can get relief. I agree with what Frank told you. There unfortunately is not a lot of awareness right now. A lot of treatments are somewhat speculation. I've gone for months at a time without using any medications, with then trying to find the right ones for me, now finally I am getting relief with cymbalta. It targets the nerves. I wish I didn't have to be on any medication, I've led a pretty healthy life until now. You just have to find what works for you. Like Frank said, read some of the past guestbooks. Just know your not alone. Best of luck, Holly
CommentTO KATE: I sympathize with you. I've had vulvodynia for almost a year now. When I read your post it reminded me how I felt back in the beginning. I know things may be hard right now, but over time if you can find what works for you, you can get relief. I agree with what Frank told you. There unfortunately is not a lot of awareness right now. A lot of treatments are somewhat speculation. I've gone for months at a time without using any medications, with then trying to find the right ones for me, now finally I am getting relief with cymbalta. It targets the nerves. I wish I didn't have to be on any medication, I've led a pretty healthy life until now. You just have to find what works for you. Like Frank said, read some of the past guestbooks. Just know your not alone. Best of luck, Holly
CommentHello all - it has been 2 yrs since I last posted, that is because I was doing great for 2 yrs. Some of you may remember me, I remember some of you, Frank and Sue..not sure who else. Anyway I was suffering for almost 2 yrs with vulvodynia, severe pain, burning, and itching, and I went to many different ob/gyns and finally found one who told me to try alternative medicine because he knew he could not help me. So I went to acupuncture and was so much better that i was able to have sex with my husband and we got pregnant! I had no problems with my vagina during the pregnancy but I did have serious problems with my hip being off, and discovered while I was pregnant that my hip was seriously misagligned which caused the muscles in my pelvic floor to be pulled, which in turned (I believe) caused the vulvodynia. I went to PT and also to a chiropractor and it helped tremendously. My son is now 14 months old and I went that entire time, 2 yrs, symptom free. The bad news is, it's back. It came back 2 days ago, I believe I am out of alignment again due to moving. We are moving (still in the process) and I probably pulled my hip back out lifting boxes. So now I need to find a new chiropractor and maybe an acupuncturist. I came back on the site for support..and to give some hope to others too. I wonder how many other women have this problem due to a pelvic floor injury. I didn't even know I had one until I was pregnant and the pain became intense in my hip and my whole pelvic floor. The PT's said I probably had the injury for many years and just did not know. SO those of you who have not tried it, you might try going to a chiropractor. Acupuncture also helped me, as well as some of the other suggestions on this site - eating healthy, lots of water, cotton underwear, loose clothing, these are all fantastic. I hate that I am going through this again though, and I hate that ANYONE is going through this. It is terrible, and I feel it is so hard to be a good wife and mother while I am in this misery. It's so hard to enjoy anything. But I do have hope, that I can get it back to normal again. I did before, and I believe it will happen again. Ladies, and any guys who look on here, let's support each other, and lift each other up. There is hope. I was pain free for 2 yrs, and I even had a baby. I thought that would never happen! So don't give up. I know I'm not going to.
CommentTo Erin: Congrats and welcome back. Great post, there was some much needed hope in there. You would think in your absence there were some medical breakthroughs, but unfortunately that has not been the case. My wife went through sugery for breast cancer, chemo and is now undergoing radiation. I thought the chemo might have some impact on her Vulvodynia symptoms ( thinning skin, recurrent tears, raw patchs on her labia and clitoris) but no changes. I'm happy to have her alive and cancer free, but frustrated and upset that we cannot be intimate. Same old story, sorry to complain. I'm actually more concerned for my daughters on of whom will turn 21 soon. I don't want my daughters to go through this nightmare and if there's a chance it is genetic who knows? Well, you got relief in the past so I hope it happens again and soon. Best of luck.
CommentHi Erin! We used to talk around two years ago when you were on this forum. Im sorry to hear you arent feeling well again :( Feel free to email me. JennS
Commentsomeone please help! i was wondering if anyone got vulvodynia from an injury as i did (on a bicycle). for the past 3 months i have been convinced of an std although i've been tested and tested. i start to have faith and then when it gets worse i'm staying up for days, missing work, drinking... it got a lot better and like an idiot i fooled around with someone. i'm pretty sure i had very safe sex which involved no oral or intercoarse but since the experience i am in so much pain! which of course leads me to believe i aquired an std again. ugh. i'm so tired... i'm on amitriptiline but i'm losing patience time money and sanity, fast.
Comment
CommentHi Erin: I'm sorry you're back and in pain. I've been having burning again and am using Clobetasol ointment b/c I was originally diagnosed with Lichen Sclerosis. I will be seeing the Derm. on Tuesday. Congratulations on your baby!!!! I'm sorry I've been MIA from responding to other posts, but my brother had a heart attack and was in a coma and I've been an absolute wreck. He's my only sibling left. Everyone in my family has had a heart attack and my mother and other brother have passed away already. It's very scary when most of your family has died. Anyway, I hope we all find the pain relief we need soon. Sue
CommentTo Holly You were asking about a remedy for itching a while back. That is my major symptom, too and after years and years, I found something that soothes me and last for 4-5 hours. Organic Apple Cider Vinegar mixed with organic vergin coconut oil. About 1/2 and 1/2 works well. The oil will solidify under 76 degress but when you touch it with your finger it melts again. Apply it topically to any area that itches. It works for me and its cheap. I've had dozens of perscription from all kinds of docs, including nationally known experts on vulvodynia and nothing has stopped the itching so quickly and thoughouly.
CommentHi, everyone. I posted my story a few days ago and appreciate the responses..I have a few questions and some updates on my condition. I really attribute my vulvodynia to my chronic uti's which cause the yeast infections. There hasn't been more than three weeks since Feb 08 that I haven't been on some kind of antibiotics...Well, of course this weekend when we get to leave town to go to a wedding I wake up Saturday morning with a UTI. I was devastated. So now, I'm back on antibiotics with a yeast infection, of course. I called and made an appt today with the gyno on Thurs. I'll wait it out. I am never sticking Monistat or any type of yeast infection cream in me again. And then Friday, I am going to have an IVP done, which the urologist reccomended back in August and I just put it off. I'm not looking forward to it. But hopefully it will give me some answers as to why I'm getting these uti's. I'm very clean and do everything by the book, all the time, everytime. So we'll see how all the stuff goes this week. Also, for the first time, I'm going to talk to my gyno about vulvodynia. My pain level is not at a point where I think I need meds, although I'm afraid it's headed there. I'm am seriously considering not having sex anymore. I consider myself a lucky person with vulvodynia to still have minimally painful sex, but with these uti's, it's just not worth it anymore. Now for my questoins to all of you..some are medicine related, some are emotional. Do any of you ever get really angry when you see all these women around you and know that no on else is feeling like you?? Did anyone have relief with accupuncture for their vulvodynia? Has anyone had relief/success with symptoms that they believe were caused by antibiotics/yeast infections... Thanks for everyone who writes on this website and responds...I pray for us everyday. Brooke
CommentI forgot to ask before, does anyone know any good acupunture therapists or gyn's in Kansas City? Brooke
CommentTo Brooke: My wife has suffered through UTI's for years, at least two or more a year. She contributed them to sex in general, me performing oral sex on her and anything else she could think of. When she got a UTI while we were on our one and only cruise, the doctor onboard said sometimes it's just the proximity of the vulva to the rectum. In other words things are so close that a UTI is inevitable. I've refused to have sex with her since she is raw and I know I'll only cause pain and damage. Sex should feel good not hurt the one you love, at least in my opinion. Getting back to the UTI's some of the ladies here have suggested daily use of "D-Mannose" it is a simple product which acts like cranberry extract to make the walls of the bladder slippery so that the bacteria such as E-Coli cannot grab hold and multiply. Regarding Yeast infection from antibiotics or other causes, boric acid suppositories seem to wrok well for my wife and others, in addition to taking probiotics such as "PB 8". Sorry you are going through this revolving door problem, best of luck.
CommentTO BROOK: As far as emotional issues, yes I feel the same way you do. To give a bit of history, my vulvodynia was caused from a hymenectomy surgery I had a year ago. My vaginal opening was literally the size of my pinky finger. I know this may be hard to belive but this problem went undiagnosed for years. I had seen several doctors in which none of them ever thought of the fact that I might need surgery to open the area up! Until I finally found the right doctor who performed my surgery. Anyways, my only dream was to have a baby, and still is. I am having a hard time dealing with the fact that it's difficult to have sex with my husband. And in addition, my younger sister is due with her first baby this January. It's really difficult for me to deal with. Even though family and friends are sympathetic, I really don't think they have a clue what we as sufferers are going through. I thank god for this website! Holly
CommentTO BROOK: As far as emotional issues, yes I feel the same way you do. To give a bit of history, my vulvodynia was caused from a hymenectomy surgery I had a year ago. My vaginal opening was literally the size of my pinky finger. I know this may be hard to belive but this problem went undiagnosed for years. I had seen several doctors in which none of them ever thought of the fact that I might need surgery to open the area up! Until I finally found the right doctor who performed my surgery. Anyways, my only dream was to have a baby, and still is. I am having a hard time dealing with the fact that it's difficult to have sex with my husband. And in addition, my younger sister is due with her first baby this January. It's really difficult for me to deal with. Even though family and friends are sympathetic, I really don't think they have a clue what we as sufferers are going through. I thank god for this website! Holly
CommentThanks Nanci for the tip. I am willing to try anything at this point! Holly
CommentHolly, I agree. Watching family and friends having the things we want is probably one of the most difficult thing. Although I'm not nearly ready for kids I wonder what it will be like when I am. Thanks for all your input and advice thus far. Frank. Thanks also for your advice. I have a few questions for you. That probiotic you reccomended...where can I purchase it and is it one of the better ones. There are tons out in the market. I think every UTI I've had this far in my life is from Ecoli, and no matter how careful I am, they always seem to get up there. If you look around on uti websites alot say to cleanse the area before sex. My urologist said this is actually bad because it takes away the good bacteria leaving you even more prone to infections. I guess that makes sense. It's strange how people (Dr's) can have such different things they think is proper. Anyway, I'll let you know the results of my IVP. I'm figuring it's not cysts, tumor, or stones or I would have had some other symptoms...At this point I'm just hoping they'll say something is structurally wrong and It's just my anatomy. Any answer will do at this point....Oh yeah, and that D-Mannose...where can I purchase that. Do you know if that is supposed to work better than cranberry pills or take in conjuction with? Thanks again. On an unrelated note...does anyone have issues writing in the guestbook??? Whenever I go to type in the fields it redirects me back to guestbook page. It does it at my computer at home so unfortunately I've only been able to write at work. Brooke
CommentSue, thank you for the kind words. I am sorry to hear about your brother and I hope you are hanging in there. Brooke, I had amazing results from acupuncture and when I first started having vulvodynia I believed it was from antibiotics I took after lots of UTI's and then yeast infections from the antibiotics. But I had UTI's all my life and I am pretty sure that I actually have interstitial cystitis, although not a severe case. I have flare ups every so often but once I stopped taking all the medications for UTI and yeast infections I felt SO MUCH BETTER. It was hard to stop because I was desperate for something to help me. But it was worth it. And the acupuncture did help me. I do still believe though that the antibiotics may have contributed to my problem, but were not the CAUSE of my problem. My problem was the pelvic floor muscles being pulled and tightened. Since I went to acupuncture and chiropractic I have not had a UTI or yeast infection. Even when I was pregnant. I think I would not be having a flare up of vulvodynia either if I had continued going but I did quit after I had my baby. So now I am wishing I hadn't stopped going! Anyway, I highly recommend acupuncture, because even if it doesn't really "cure" you, it is a huge stress reliever and very relaxing, and that certainly can't hurt anything. Brooke & Holly- girls, I know what you mean. It is incredibly frustrating at times to know that other people out there are just living carefree lives, having great sex, taking for granted all the things we want, like being able to just go to the grocery store or to work without suffering. Or having a baby. Thank God though I was able to do that and I plan to do it again! I believe that you will too ladies, just hang in there and keep trying to find something that helps. It really does make a girl angry though at times. And it's hard not to be able to really tell people. You can't tell the cashier at the store that you are almost in tears because your crotch is on fire can you? It's so hard. It seems really unfair. And there have been times I have said to my husband, "God must hate me". But deep down I know that's not true. It just seems unfair. Truly I think this problem is worse than many others. But at least we have hope. It's not fatal. I know I would rather something else be hurting on me than down there, but it is what it is, and we just have to work on fixing it and getting doctors to help. Girls, if I ever come into millions, we are going to research this thing, I promise. Hang in there. OH Brooke maybe just google acupuncturists in your area. If you can, find one who was trained in China. They are the best. I am Dallas so I can't recommend anyone local to you but good luck. Jenn I will email soon with a long update. : )
CommentTo Brooke: Check you home computer for things like security settings? I've read over and over again that the battle with e-coli is a constant one for some women and the D-Mannose which you can get off the Internet is taken a couple times a day in water and supposedly works like cranberry products only better.My wife and I shower daily but I was thinking of using some kind of antibacterial wash prior to sex, I just don't know if it would help. Then there is the question of contamination from oral sex, and the bacteria we are spreading around through that activity. I know all these treatments with Macrobid and other antibiotics cannot be doing the body good. Regarding the PB8 probiotic I know it works well in restoring good bacteria to the body and both my wife and I have used it along with antibiotics to prevent stomach upset and in my wife's case to prevent yeast infection. The PB8 is available in most health food stores. The D-Mannose is not cheap, check out Intenet pricing. My wife has taken it , but not on a regular basis which according to the product is necessary . All of this is very frustrating, we've had a good run and were able to be intimate once or more times a day for many years, but the last eight or so years have been terrible. Keep trying and stay positive.
CommentTO FRANK: I agree with taking probiotics too. But for some reason, the specialist I saw at the U of Michigan vulvar clinic told me to stop taking them???????? I never did get clarification as to why. I have heard that some people can get an overgrowth of too much good yeast. I don't know if that was their thinking or what. I usually get them at a health food store, and they actually told me we should take them like candy. Now I don't know what to think! Thanks Holly
CommentFor Erin, You might want to try this physical therapist in Dallas. Pam Jones Physical Therapy for Women 817 -247- 1130 9639 Wendall at North Texas Innovations It is a name my physical therapist gave me. MY PT experience in Austin Tx has left me 99.9% pain free. I've counted 4 different twinges of pain in 4 weeks!
CommentTo Holly: I have heard of overgrowth resulting from too much good bacteria. I think if you are using antibiotics it's a good idea to supplement with Probiotics. On a daily basis if you are relatively healthy I don't know if they are necessary, helpful or harmful? I do think for women suffering from recurrent UTI's supplements such as cranberry juice extract or D-Mannose might help prevent reoccurance. A healthy diet and supplementing with vitamins might also be a good idea. In the last year or so the medical community has agreed that most of us are deficient in Vitamin D, and that it may prevent a host of ailments. You have to be careful not to overdo this vitamin because it is fat soluble ( stored in the liver) my wife and I have been taking between 1000 and 2000IU a day along with a multi B and Ester C ( not acidic) we buy our vitamins through Swanson health products catalog.
CommentTo Erin: Let me start by saying thanks for all the info. Tomorrow is my appt with my gyn and then Friday is my IVP. I just need my UTI's to go away, for good. As I mentioned before, I haven't been off antibiotics for more than three weeks since Feb. That's about nine months. I can't even imagine the damage it's done to my body. I had a couple questions for you though. I know you said you have flare ups right now, but once you got off the antibiotics and started acupuncture were you ever pain free? How long had you taken the antibiotics before vulvodynia started up? I think there is a acupunturist who is an MD in china here in Kansas City that I am looking into. You have given me some hope. I am tryin to stay positive here and telling myself if I just stay off all these evil meds, begin a healthy lifestyle with exercise, and of course my faith, somehow it will be okay. Thanks again for all your input. For Frank: Thank you as well. I am going to look into the D-Mannose and the PB8. I have given up on cranberry pills and juice. They never seemed to help me. I know there is nothing to personal here, but I wanted to tell you what I think about the antibacteral soap before sexual activity. For oral sex, I never heard of getting UTI's that way unless sex is afterwards. Perhaps you should experiment and just do that and see what happen. I've never gotten a UTI from oral sex, and there have been many times when I haven't had sex afterwards. I wish all those tips that they used online like oh drink lots of water, pee after sex actually worked. I just think some of us are the type of women where if you get them you get them. Right now I'm having a really bad day with the burning and I'm actually hoping it's a Yeast Inf. because it's something. I'll find out tomorrow. Oh, to be a woman.
CommentTo Brooke: Let me explain some of my ideas regarding the whole sex thing and UTI's, I'll do my best to be clinical. First of all I'm fifty five years old and my wife is forty nine. She has had more frequent UTI's in the last ten years which kind of coincide with her Vulvodynia symptoms. Trust me, by now I/we have tried all sorts of combinations with our lovemaking to avoid problems. I think some of the contributing factors are even though the woman is relatively clean in that area, with oral sex the combination of saliva and any bacteria in the area are mixing and being introduced into the Vulva where they travel around. I agree that intercourse following oral sex will increase the risk of UTI, but I think the damage might already be there regardless. I think another problem not having anything to do with sexual activity is the physical change of the Vulva due to age and whatever mystery illness my wife is suffering from. She gets this recurrent tear at the six o'clock position and the skin there is extrememly fragile. Her labia have also gotten very small. Although some of this sounds like Lichen's I don't believe that is her illness. Getting back to my theory, I think these changes to her Vulva and Labia make her slightly more prone to infection. I agree that some women are more vunerable to UTI's and yeast infections. Why, Why, Why!!!! Long term antibiotics should knock it out of your system, but if you are constantly being reinfected antibiotics are Not the answer. My wife has done the urinating after sex thing and we don't know if that really works either. I am convinced that frequent intercourse can lead to yeast infections for some women. A few years ago I read an article on a Women's health site that was suggested here. The article said that some women have a very delicate Ph balance in their Vagina and that semen can upset that balance and lead to a yeast infection. I think back to the time when my wife and I would have sex more than once a day and her yeast infections were frequent. Please don't think I am bragging or proud of my capacity for sex, it has caused problems for my wife and endless frustration for me. Now after her bout with Breast cancer, chemo and radiation, we have not been intimate for a very long time. All these symptoms are a painful and exhausting for her, I love her and have always found her attractive and desirable, so I am left in limbo. Sorry to vent but as you women suffer, the men who love you have their own issues. I hope you get some answers and positive results.
CommentFrank, you are very knowledgable and a good resourse. That is an excellent theory considering your wife is 50. My problem is I'm 24. If every women/man who writes on here could go back to med school, I think we'd all be pain free in a year or less. That is one of the things I'm going to check with the Dr. tomorrow about is my vaginal PH. Sometimes I notice if I have just regular non yeast discharge it can increase the burning. Well, it's on my list of questions to ask tomorrow.
CommentErin, I wanted to ask you one more question and anyone that has an opinion about this. I know it's been discussed plenty of times I'm sure. Through all of this, I have been on ortho tri cylcen since I've been 16. On Aug. 14th I stopped and got the depo shot...I haven't gotten my pd since. I spotted twice, but that was only after sex. I Don't think it's healthy for a female to not get their period like that. I'm considering stopping all together since I've been on them for over 8 years now. Any thoughts? One more question this time, I promise. It's personal, are able to be sexually active after everything you went through. Baby and all ?
CommentBrook- Let us know how your Dr appt goes! I curious about the PH situation and what your doctor says. Thanks Holly
CommentTo Brooke: Thanks for the compliment. I sure wish I could go back and make some changes. Just a word of caution, double check everything you read on this board including what information I offer. We are not health professionals and even they make mistakes! I believe the Vagina is normally acidic and that is when it is healthy. That whole theory of semen upsetting the PH balance is that it dilutes the acidic levels. My wife started birth control twenty six years ago with one course of depro provera( sp) and was then on and off Ovcon 35 up until about nine years ago. Her symptoms of thinning and tearing began shortly after stopping The Pill and my having a vasectomy. Just when we thought the pregnancy scares were over Vulvodynia stepped in. My wife has an appointment with her gyn in four days to discuss the raw skin of her labia and clitoris. I'm positive her doctor will have nothing to offer. When I met with this doctor several years ago to discuss my wife's recurrent tear, she said make sure she was lubricated. I told the doctor I am not a brute and all the lubrication in the world would not prevent the tearing because it is not caused by lack of lubrication or agressive lovemaking but rather by weakened or thinning skin. It was like talking to the wall. I get the impression that unless you are a medical doctor yourself , you are treated like a moron.
CommentHi everyone. I am 32 years old and have had vulvar vestibulitis for about 6 months. I've been through the typcial series of doctors, unsuccessful yeast treatments, etc., until I was finally fortunate to find an OB/GYN in my area who treats vulvodynia. She has prescribed me Lyrica, because I've also been having some strange nerve pain in my right arm and leg (have also seen multiple neurologists for this - no one can figure it out). I have been taking 75 mg of Lyrica 2x a day for three weeks now. So far, I have not experienced any relief of either the vulvodynia or the arm and leg pain. Has anyone else tried Lyrica for vulvodynia and experienced any relief? If so, how long did it take to see improvement and what dose did you use? I would greatly appreciate any input....
CommentHello, I am fourty-seven years old and have had vulvodynia for the past twelve years. I started having UTI's every two months for three/four years with yeast infections. I had my bladder checked and the doctors said that everything was normal. I then started having difficulties having sex due to pain at the opening of my vagina. I went back to the doctor and had test ran to find out there was no sign of an infection. This continued until I couldn't have sex at all. I returned to my GYN for her to tell me this was all in my head. This statement upset me to no ends. I left her office crying and not knowing where to turn to. I found myself asking God what had I done to deserve this pain. I would sit in a tub with baking soda and cry feeling so hopeless. I would pray asking God to help me and make the pain go away. I got another yeast infection and instead of using the topical solutions I tried Diflucan and found this took most of my pain away allowing me to have sex. The doctor told me to take it for a month, but after I went off of the medicine all of my vagina pain returned. It got to the point that I couldn't sit without having pain. My entire vagina felt like pins and needles. I continued to go to different doctors with no results. Last year I was cleansing my body hoping this would cure me, when I stumbled across a topical solution that helped me. it didn't take the pain away completely but I could tell a difference.The only place you can purchase the solution is from a compounding company. I thought I had found my cure, but last summer I got into a swimming pool and the pain returned full force. I continued to use the solution, but it didn't help me anymore. I went back to my GYN and found that I had two tumors on my uterus and several sist in my female organs. I had to have a hysterectomy and now everytime I pee my vagina hurts inside and out. I still have the pain I had before making it impossible to have sex. My GYN wants me to take elmiron because he feels I may have interstitial cystitis. I don't feel like I have to pee all the time, so I haven't taken the drug. I just feel like giving up!!!!!!! I have been to so many doctors and I still hurt the same. I burn all the time, its uncomfortable to sit at times, it hurts to have sex and after sex I hurt for days. After having the hysterectomy I hurt worse. I don't know what elese to do. I just want to be normal again; to feel like a woman. I want to stop being scared to have sex, because I know it will hurt. I feel so sorry for all the women that have to endure this pain. I hope they will find a cure for this ugly disease. No woman deserves to suffer this way. I don't understand why we can't find help for this illness.
CommentTo Keely and Karen- I have been posting here for a while now and I also have vulvodynia. I tried elavil and neurontin with little success. I am now on cymbalta. I will say I've seen about 90% relief. You may want to try it, I noticed relief in about 2-3 wks. Karen- I went through the same emotions you are going through. You just need to find something to help you manage the pain. As far as sitting, I have a desk job all day and I found the best rubber "donut" seat. It has a hole in the middle, for obvious reasons! Also, my doctor advised me not to bathe in baking soda as it could irritate the area worse. I found that rubbing an ice cube all over gave some relief. As far as internal pain, the cymbalta did the trick. Hope you both find relief soon. Holly
CommentTO BROOKE - Sorry it took a couple days for me to get back to you. I hope your appt went well and can't wait to hear the update. First of all I want to tell you I was pain free, yes I said PAIN FREE for TWO YEARS. This was after I got off all antibiotics, started acupuncture, and started going to PT and chiropractor. I was able to have sex with my husband for a couple months almost pain free after starting the acupuncture alone, and then during my pregnancy I quit going to acupuncture because my vulvodynia symptoms had completely disappeared. They did not come back until two weeks ago. And my son is almost 15 months old. So, I went over two years, totally vulvodynia free. Having it come back was really upsetting, obviously. To answer your question about sex, we were able to have pain free sex after the baby, right up until two weeks ago. Also, I did have a c-section, because my PT recommended that I do that to avoid any further pulling or irritation of my pelvic floor muscles, although my obgyn said that he felt it would be ok either way. I trusted the PT and I do think that was probably the right decision. Going back to your questions, I took the pill starting at 15 and tried it off and on for several years until I was about 21. My health was SO much better when I was off of it. I am not even talking about vulvodynia because I didn't have that until I was 30. just in genera. i think it best to get off it, and any meds if possible. also i found that using organic products made a differnce for me. shampoo, dish detergent. Everything you can switch to organic, do it. I know it's expensive but if it helps it's worth it! Get as healthy as you can get. Anyway, I have hope that I get this thing under control again, because I did it before. So don't give up. We're still young with lots of life ahead and we need to live it!!!!!!!!! Same for everyone else on here. Keep going girls. Brooke or anyone else feel free to email me if you need to talk. Jenn, I know I still need to email you, i'm sorry it's taking forever, still getting unpacked over here.
CommentHolly, thanks so much for your post. You give me hope that there's something out there that will work for me. Lyrica is the first medication I have tried, so I guess I still have a lot of other options to try if this doesn't work. That's interesting info about Cymbalta. I've been on Paxil for about 10 years now (for anxiety, not vulvodynia), which is also an SSRI. Do you know if Cymbalta has effects on pain that other SSRIs do not? If so, maybe I should consider switching. Thanks again - I really appreciate the support!
CommentHolly, thanks so much for your post. You give me hope that there's something out there that will work for me. Lyrica is the first medication I have tried, so I guess I still have a lot of other options to try if this doesn't work. That's interesting info about Cymbalta. I've been on Paxil for about 10 years now (for anxiety, not vulvodynia), which is also an SSRI. Do you know if Cymbalta has effects on pain that other SSRIs do not? If so, maybe I should consider switching. Thanks again - I really appreciate the support!
CommentHolly, thank you for your post. Does cymbalta have bad side affects? I hate taking medicine because it's not good for your body. Have you tried Gabapentrin topical? After my hysterectomy my doctor put me on premarin this took my burning away, but I worry about getting breast cancer. I tried having sex and it still hurt at the vagina opening. The creme I was on before having surgery was a nerve blocker. Do you know if they can go in and cut the nerve that is hurting you? If they can does it take the pain away? I wish I could find something natural to help with the pain. I drink coffee and ice tea, do you know if this makes you hurt more? Sorry, I have too many questions. Thanks again, Karen
CommentErin...I do have updates....quite a few. Well, thursday was my gyn appt and she looked and said I was very inflamed and red and probably have been the entire 8 months I've been experiencing this. She couldn't really give me a reason for the cause, but she put me on Clobetasol, which is an anti-inflammatory cream. Twice a day for two weeks and then once a day. She said to give it two months, but I am already experiencing some relief. I don't feel like I am burning 100% of the time, just some of the time. I guess I'm happy she found something. I go back the second week of Nov. for my Depo shot and also to get another check up. She also said if this doesn't help she'll take a skin biopsy the next time. All in all I was very happy with her care. She seemed very knowledgable and understanding. She was very comforting in telling me we'll try different things until something works. My first acupunture is Thursday at 9:15, I'm excited and nervous at the same time. I also started working out again, just 30 minutes a day. I never did before because I'm so tiny to begin with 5'1 115 lbs. Eliminating soda is also on my list. I cant quite quit coffee and tea because I work 12 hour night shifts. I will get my IVP results today at some point. Anxious about that as well. Also, the only other big thing I did was tell my bf. I hadn't told him the whole time I was experiencing this. He was pretty upset but understanding why it would be hard to talk about. The only bad part is I'm crying more now. When I talk about something aloud it equals tears where keeping to myself doesn't. I'm sure you know how that goes. Okay. I'll let you know how my acupuncture goes. Thanks for checking in. Brooke
CommentTO KEELY- Cymbalta was mentioned to me by a previous poster. I had never considered trying it as it is not the most common drug we use for vulvodynia. It is mainly used to treat fibromyalgia and is also an antidepressant. I have not heard of it having any other effects on pain that other SSRI's do. I did some research on cymbalta.com before I asked my gyno about it. As a matter of fact, she was actually considering Lyrica and or Paxil for me too. You have to find what works for you. My main concern was weight gain, I gained 20 lbs on elavil. I have not on cymbalta. I hope you find much needed relief, feel free to email me if you'd like. Holly
CommentTO KAREN- Some side effects of cymbalta are nausea, constipation, and for me insomnia. (which really sucks!) I agree, I also hate taking meds and I wish I didn't have to. I have not tried any topical gabapentin, although I was prescribed doxepin in a topical cream. It actually made things worse! I know there is a procedure where the nerves can be cut out. If you read past guest books, some people contimplate having the surgery. For me right now, it's far from my mind. As far as diet, some find the low oxylate diet helpful. Personally I find it hard to follow. I do know drinks like tea and pop should be avoided. Coffee I'm not sure. Definitely avoid chocolate. I went and bought a book called "The V Book". It has every women's topic, including success stories. Also, I researched NVA.org. There is some helpful information there too. Feel free to email me if you'd like. Best of luck, Holly
CommentMy wife saw her gyno yesterday. Dr. said she was very dry probably due to the chemo, suggested an estrogen pill or suppository which is placed in the vagina to help. This will probably not be an option because my wife has Estrogen sensitive breast cancer and although the medicine is supposedly non-systemic(stays primarily where it is used) I doubt her oncologist will want her to take the risk. Her gyno also prescribed Nystatin (anti-microbal) to help with the redness and itching, although there was no sign of yeast. Suggested she see the Vulvodynia here in CT. My wife asked if her gyno had other Vulvodynia patients and she said a couple but this is very rare. She told my wife she did not see the raw area on her clitoris. That may have healed in the few days since I looked or she did not look closely enough. When she started getting that recurrent paper cut like tear years ago it was me and not her then doctor who saw it and had to point it out to him. How can you be a gyno and not look closely enough to see if there is a problem? All in all not a very productive visit but we were not expecting much. Regarding Coffee and tea, these things along with some other foods contain oxalates which some sufferers believe contribute to Vuvlodynia pain. If you read past guestbooks you will get more information on this theory and about women who have have surgery to remove the gland which sometimes are the source of pain. Some surgeries have been successful and some have had bad results! Please think carefully before resorting to surgery. Best of luck to All. Frank B. P.S. I am no longer including my e-mail address because some disturbed person on another site was upset with my political beliefs and decided to harass me. I prefer to respond here anyway and there is nothing I will shy away from, so if there is anything on anyone's mind ask away.
CommentI've had vulvar pain for about one year now. Im 25 years old. I've seen about eight different doctors all numerous times who have tested me for everything possible. All yeast and bacteria tests came back negative. The last doctor told me it is all in my head and Im making up the pain. With this Ive become depressed and lost hope. Even though my boyfriend is super supportive it is still hard to talk to him because I feel like a freak. The pain comes and goes and usually gets so severe it hurts to walk or sit. I mostly have itching and burning which makes sex impossible let alone normal daily life. I was checked for Lichen Planus as well but that was negative too. It wasnt until I found vulvodynia symptoms that I now know is my problem! Does anyone know over the counter meds or home remedies to help alleviate the pain or itching? Can I still have babies normally? Help.Help.
CommentTo Celia- Let me first start by saying that I hope no one gets tired of reading my advice, but as a current vulvodynia sufferer, I feel it's my duty to speak and raise awareness on this subject. Your story sounds all too familiar. First you should not feel like a freak. You've come to the best place for advice and support. I am currently on cymbalta. It targets the nerves and helps you deal with the pain and burning. I have found it to also help itching. You may want to read past guestbooks as we all have different remedies to deal with this. Yes, you can still have children. My gyno recently told me I will most definitely have a C-section if I ever get pregnant. You may want to consider that for obvious reasons. As I tell others, you have to find what works for you. Best of luck, Holly
CommentTO BROOKE- I am so glad your dr. appt went well and that she was understanding. When I was first struggling I saw 6 diff ob/gyns before I found mine. He did give me some type of cream, I believe it was nystatin? Not sure though. Anyway, it helped me temporarily but then it was like my body needed more and more of it to stop the itching and burning. He also felt that my problem could be related to yeast, even though I was not testing positive for it, we tried all sorts of stuff for that, including gentian violet which made me SO much worse!!! Hopefully the cream will actually help you and it won't be like my situation where I became sort of resistant to it. I actually do think it may have made it worse..but I don't mean to be negative, everyone's body is definitely different, and my problem is related to a misalignment problem and all my pelvic floor muscles being pulled. So of course cream would not fix that. Anyway, I am also glad you talked to your boyfriend. I think it is really important to do that. I know this situaiton is hard for guys to understand sometimes but if he loves you he will be supportive, even when times are tough. Keep us posted on how it's going. TO CELIA- I am so terribly sorry you are depressed and feel like giving up. Do not lose hope!!! Please read back a few posts, you will see that not only did I become pain/itching/burning free for two years, I also had a baby during that time. I did have a c-section but i could have done it vaginally. They gave me a choice, given my history of problems. So I went the "safe" route. You just have to find what helps you. It can be a hard road but go back and read posts from other women who sound like they had your symptoms, and figure out what they did to help themselves. Unfortunately doctors do not fix this problem for us, we have to really be our own advocate. You are not a freak, and you are not alone. I promise. Even when you are crying your eyes out, or wanting to, and feeling like the whole world does not understand and it is awfully unfair, you are not alone. All those on this board (and alot who are not on this board) understand. For me acupuncture, chiropractic, and eating healthy helped. Creams and medications did not help me. But they have worked for some people. So hang in there. Keep asking questions and working to find out what to do. HUGS!
CommentI have suffered for over 5 years with pain that i was told was yeast infection. I went to about 9 different Dr.'s including a Urologist and finally I was told it was Vulvodynia. I had found a very caring individual on this website that helped me seek out a very good Physical Therapist In Austin Texas by the Name of Sullivan physical therapy. It has been months and I am feeling so much better.
Comment
CommentHi All, First time writer, but I've read entries on and off for months while researching. My case seems a little different - it was a gradual on-set that I didn't recognize for YEARs. It may or may not have been caused my a severe allergic reaction to a pad OR it may be from having been on some kind of birth control since I was 16. It's been 4 years since the allergic reaction and 3 1/2 since I lost interest in sex (completely and almost overnight). I've had pursistent and gradually worsening itching, and the skin is SO tender; all my symptoms started so subtly that I didn't notice them until they worsened to the extent that I couldn't have sex period (let alone pain-free). I've had a lot of sleepless nights trying to trace my symptoms back over the years. I have some questions to pose to you: I'm from a small town where we have only 2 gyno's and they certainly don't specialize in anything, let alone my problem. I was diagnosed with Vestibular Dynia. I know it's similar to Vestibulitis but the PT he referred me to stressed that it wasn't the exact same, and to not confuse them. Now finally to my question - has anyone been diagnosed with Vulvular Dynia specifically? What are your symptoms and how do you cope/what have you tried? Second question: Does anyone know of any resources/specialists in Edmonton, Alberta, Canada? I just moved here and don't know where to start. Third question: has anyone heard of any treatment options that don't include topical creams or antidepressants? I feel like topical treatments would just be a bandaid, and anti-depressants are so hit-or-miss. Take care, I feel for ALL of you and it is a small comfort to know we're not alone. Rebecca
CommentHi, I live in England and have had this horrible thing they call vulvadynia for two years now. It started after a uti and antibiotics. Of course I was treated for thrush but it wasn't that. My symptoms started with burning, then moved onto pain and burning. i have not tried to have sex for 6months now as it is too painful. My gyno says I should keep trying to have sex, easy for him to say!! I went to a physio to try this feedback technique, but a word of warning, if your physio isn't trained exactly right or you have got a type of vulvadynia that does not respond to physio it may make things worse. All I got from the sessions was an overactive bladder, so now I am on meds to stop me leaking all over the place. I started some anto depressants about 5months ago and they seemed to improve things by about 30%. But then I had to have an op for an abcess and a fistula in my bottom (not saying that the anti D's caused this) and then I was put on a course of anti biotics and now my problem has flared up really badly again, very red with pricking stabbing pains in the vestibule just above the urethra and at the vaginal opening. The only thing that gives me relief is steroid cream and I know I can only use this occassionally. My gyno told me last June that he cannot help me. He says I do not have LS (but did not do a test). So I am now back with my ordianary doctor and she says she will try and help but has not treated anyone with this before. She is going to keep trying me with different anti d's and also she mentioned a muscle relaxant type of drug. I've tried all the alternative things, acupuncture, chinese herbs, chiropractor, relaxation techniques...no good, but I have met a wonderful therapist, so at least I can talk about my problem and have come out of the black depression I had for the first year. Luckily my husband has been a rock and I am so lucky to have him. I'm 45 and so desperatly want to have intercourse with my husband again. Maybe one day they'll come up with a cure!!! Good luck to everyone.
CommentHi, me again. Forgot to say I also tried eostrogen, low oxolate diet, anti candida diet. Also had a steriod injection in that area, didn't help. Asked my gyno about botox injection and he refused to consider it as no results had been published and no proper clinical trials done for it being used in that area.
CommentTo Holly: Regarding Botox, injections must be repeated every few months regardless of the medical condition. There are serious risks associated with it depending on the injection site. My mother has a problem with her voice and Botox is one of the treatment options but there is risk of paralysis, problems such as swallowing, uncontrollable saliva, etc. Injecting around the Vulva could risk incontinence or other problems. I'm sure it is being done, but I respect your doctor for holding off. We are still throwing rocks at a medical condition that deserves modern research and treatments.
CommentThis is the first day of the new vulvodynia.com website STORE. We have migrated our server to a better and faster webhost and added a store with several products for both professionals and patients. Much Much more to come in the store so keep checking it out for new, exciting and innovative products and services. Howard I. Glazer Ph.D. owner, vulvodynia.com
CommentDear DR. Glazer: Thank you so much for your continued support of this site. I don't know why there has not been any activity in the last few days but I know it has been a comfort to many. Frank B.
CommentI am helped tremendously by Effexor XR 37.5 mgs twice daily estradiol 0.5mgs daily and lorazepam 1mg daily or as needed. I also find that too many vegetables, coffee, acidy things will cause me to burn. Drinking alot of water helps. Desitin ointment is soothing also. Aveeno soaks are helpful. Don't give up. I'm praying for you.
CommentHi everyone...just wanted to pose a question. Does anyone notice itching right before and right after your menstrual cycle? I have vulvodynia, and am controlling my pain with cymbalta. But I have narrowed it down to this time of month that I feel the worst as far as itching goes. Does anyone have any suggestions or things to do at this time? Also, does anyone know why this particular time is worse? Thanks Holly
CommentDoes anyone else take nortriptyline for pain? It is wreaking havoc on my bowel functioning. Ever since I doubled the dose to 20mg a day, things have gotten much worse. I have noticed not just bowel problems but an upset stomach half the time too. One of the stated risks for this medication is gaining weight - however, I feel like I am at risk for LOSING weight - and at 5'7" and 115 pounds, losing weight would be boderline dangerous for me. What other medications could I take that don't have this nasty side effect? The only reason I do not stop the medication is that it DOES seem to reduce pain a bit, so I was hoping to continue to increase the dosage until the pain disappears. However I can't handle all this other bad stuff. Can someone please recommend an antidepressant that does not have these side effects? Holly, sorry to ask such a personal question, but does Cymbalta have this effect on you? I'd be willing to switch to that if it doesn't, as long as it's available in Canada. Thanks.
CommentTO AMBER: Well, I'm afraid to say cymbalta does cause similar side effects. I felt really naseous when I first started taking it. It did get better after a while. It does cause constipation, but I find that getting enough fiber in my diet on a daily basis helps a lot. Probably the number one bad side effect is insomnia. But I do feel A LOT better and can deal with the side effects. I wish you the best and hope you find relief soon! Holly
Comment
CommentHas anyone tried topamax for treatment of vulvar vestibuilitis? I had my annual the other day and the dr. was greatly knowledgeable and recommeded to lidocaine gel for me, but also mentioned topamax. She has tried it with 9 patients and so far all 9 have had positive results. Anyone familiar???
Commentsomeone PLEASE help. I cannot stop thinking this is something else. The pain is keeping me from work, family, everything. I have no support and everyone I know is telling me to just deal with it. It goes away and I'm fine, but it comes back with a vengeance out of nowhere. I've posted on here many times with no help. Someone call me please, I'm losing it. 18609442054 or at least pray for me.
CommentI am 24 and really confused. a lot of you have responded (which i am so grateful for) but seem to have such different stories and theories. i am wondering has anyone gotten this from an injury like me? i hit my pelvis on my bike bar during a fall. at first it was this horrible burning from my urethra up to my lower stomach and it felt like little electrocutions on my labia minor. i actually went to the dr. wondering if i had crabs or lice! every test for anything else came back negative though. my clitoris stings and itches and i get these major stinging pains out of nowhere and sometimes its on the clitoris and upper left and right mons pubis on the bone part and other times its on my right labia major at the very end of it almost near the opening of my vagina. it also sometimes feels like a bruise? my legs feel bruised as well. does anyone else have this? usually there is no pain inside, only a slight itch once in a while. mine seems to be all on the outside??? is this vulvadynia? it's just hard for me o believe that my whole vulva would act this way when i only fell on the left side and mostly on my left leg? where the actual injury happened never hurt! i was diagnosed and it keeps getting so much better to where i relax and then bam its back and different every time. i've lost my job and my insurance due to this. i'm losing my boyfriend, my friends and family are sick of hearing about it. i've spent so much money going to doctors when it acts up, because i have trouble thinking it's not some std. when testing is negative i always calm down and when it flares up again i start thinking maybe an std is showing up that hid during my testing. as you can see this is ruining my own mind body and soul as well as those close to me. i want to be able to get out of bed in the morning and look forward to the day. i even want to think of little things like what groceries i need, what movies i'd like to see, what a nice day it is outside. but right now i'm so worried and unsure and in pain. all i do is walk around like a zombie all day thinking about it and what if the doctors are wrong. to be honest, i drink a great amount every day- for the pain and to stop my mind from constantly wondering. if someone else could tell me they had a relatively similar experience accompanied by the same symptoms i think i would finally feel like my diagnosis is right and i can get back to my life and managing the pain. right now, what my mind thinks of the pain is way worse than the actual pain. if you or someone you know could help me figure this out please contact me! thanks for all the support and for reading this large sad post. sj
CommentTo SJ: What you have described sounds like nerve damage and the resulting "Nerve Entrapment". One of the theories regarding Vulva pain is trauma to the area such as you described in your accident. Sometimes this trauma happens when the woman is just a child and the symptoms and pain get worse as she grows up. You can read some of the past guestbooks for more information, and seek out a physical therapist who specializes in therapy to relieve the nerve damage. Best of luck and stay strong. Friends and family find this very private problem sometimes very difficult to understand even though you may just want to talk. You are in the right place.
CommentHolly - thanks for your response. That's really great to hear you feel better with the Cymbalta. I think I may inquire about this pill with my doctor. The nortriptyline does help me too, but it has the opposite effect of making me drowsy. I don't know if I could deal with insomnia! It would be worth it though if it could help my pain problems. Thanks!
CommentHi there everyone It has been a while since my last post!! I am still not feeling any relief though... About a month ago I started taking Cymbalta. So far it has no effect on my vestibular pain. I have noticed some weight gain though. Has anyone else experienced weight gain on Cymbalta?
CommentTo Josy- Sorry to hear your still not getting relief. I have not noticed any weight gain on cymbalta. But ofcourse everyone is different. I have a regular exercise program that I do about 5-6 days a week. It does help, both with weight and also mentally. I was unable to exercise when I first got vulvodynia, due to being so raw and irritated. I am better now, thank god. I find that I get a flare up right before and right after my menstrual cycle. I know it's hormone related. Well, best of luck to you. Holly
CommentTo Josy- Sorry to hear your still not getting relief. I have not noticed any weight gain on cymbalta. But ofcourse everyone is different. I have a regular exercise program that I do about 5-6 days a week. It does help, both with weight and also mentally. I was unable to exercise when I first got vulvodynia, due to being so raw and irritated. I am better now, thank god. I find that I get a flare up right before and right after my menstrual cycle. I know it's hormone related. Well, best of luck to you. Holly
CommentI have had vulvodynia for about 4 years. I've tried all the suggested treatments of your site and many other sites. I have fibromyalgia, IC, IBS, lupus and have back pain. My doctor has suggest a nerve block. What are your thoughts on this? As a last resort he will do a nerve separation.
CommentI had this problem for 11 months. As soon as I stopped consuming soy
CommentI had this problem for 11 months. I stopped eating soy and approximately 7 or so days after I FINALLY felt COMPLETELY better. I don't know if it will work for you but please try.
CommentHi i am 33 years old and was diagnosed with vulvodynia two years ago. I wanted some advice as i am not sure if this is what i have. The more i read about vulvodynia the more i hear that it is a condition characterised by vulva pain. I dont get any pain i just get intense itching sometimes its unbearable. If i scratch then it will swell up and burn. I have had tests for thrush and bacterial infection before my diagnosis and they were both negative. I dont get it all the time either sometimes it seems to be more intense around ovulation mid cycle and certainly just before and during my period. Can any one give me some advice - could i still have vulvodynia WITHOUT any pain at all just increadibly intense itching? Even though i have tested negative for thrush could i have systemic yeast infection that might be causing this. Any help you can offer would be greatly appreciated. Also could this condition effect your fertility my husband and i have been trying for 6 months to concieve with no success despite temping and using ovulation predictor test kits. thanks
CommentTO JEN: I have had vulvodynia for about a year now. I actually have very similar symptoms that you do. I also get intense itching right before my menstrual cycle and about a week or so right after. All of my tests came back negative too. I do know that vulvodynia can cause itching. When I'm really bad I use an ice cube over the area, which does provide relief. You can also take a cool bath in aveeno oatmeal. I have heard that you can have an overgrowth of too much good yeast in your system. It has to do with your vaginal PH being off. I've been told that the main thing to keep in mind is getting your body balanced. Unfortunately we have to deal with our monthly cycles, which can cause our hormones to act up. Not sure if this helps, but as others will tell you, read some of the past guestbooks. I hope you find relief, Holly
CommentHi this is Kate. I posted in the beginning of October. I had a great couple of weeks for a while and even got to have sex! (yay me!) but now it burns again and its just not at the vaginal whole my urethra burns. It dosent burn to urinate just the urethra itself and like right under it going towards the vaginal hole burns. Anyone else have those spots hurt? I have read some past stories where some women have had problems around the urethra. I'm feeling a bit miserable because of the burning but I read my last entry and I was wondering if I would ever be able to have sex again and I did get to. So that makes me feel a bit better. I have a question. Has anyone had or heard of vulvodynia going away on its own or atleast going dormant on its own for a while?
CommentHi, I was wpnderingif Chiara from Italy still contributes to the guestbook. I tried to get in touch with her about the homeopathics she was using, BOIRON and the e-mail address she gave to contact her is not longer usable. Does anyone know how to contact her? Thank you
CommentHi everyone, this is my first time posting here, am so glad for finding you all, helps to know we are not alone. i have suffered from vulvodynia for just over 3 years and was dyagnosed around 2 years ago now. i take 20mg amnitryptaline(srry bout spelling) every day and apart from the occasional flare up i am doing pretty well. i dont know if this is in my head or not but wanted to tell you all incase it helps you also, wen i was at my worst i was constantly getting symptons like i had a UTI but they never came back with anything so my doctor prescribed me a bottle of trimethaprim and wen i get my flare ups as long as i take the triprim for a few days i do not get any bladder problems. hope this helps. feel free to mail me. i am haveing a flare up at the mo and has lasted for a few weeks now so of course im worried that the amnitrip has stopped working, but i know we all feel this way wen we get a flareup, i have an appointment on friday with my doctor and hope she will have some insight as to why im flareing up so bad all of a sudden. ty all for sharing it means alot
CommentFor those of you who suffer from UTI's, D-Mannose powder is great. I have been using it for years. If i still feel like I have aUTI after using it for a few days, I will see my gyn and have my urine tested. So far the tests have been negative and I dont know what caused the bladder irritation with no infection. It usually happens when my vvs is flaring up. Have any of you ever tested your urine pH? I would like it if as many of you that can would get some test strips from a health food store and test your urine pH on your first pee in the morning. I am trying to figure something out. A roll of strips is really cheap. My urine pH is VERY acidic it ranges from 4.5-5.5. I have come across a few other women who tested their urine as well and they are acidic. Doesnt vvs burning feel like heartburn in our crotches???? Acidity causes buildups in our tissues and this includes salicylic acids and that is what causes alot of fibromyalgia pains! I found this out yesterday. I go to the chiro to have my fibro lumps massaged out, it takes a long time for one lump to clear. I have them all over and have to have my husband treat me at home as well, my chiro taught him the correct way. I am now thinking that these lumps are caused by acid buildups. I would truely appreciate anyone here who is willing to test their first urine of the morning with pH test papers. This may help some of us. Its easier to become acidic than it is to become alkaline again. Thanks in advance for anyone who is willing to do this.
CommentI’m not entirely sure if this is the condition I have, but all of a sudden a few months ago I started experiencing cyclic bouts of itching, burning, and pain, usually around menstruation. I didn’t think any of it I just assumed it was hormonal shifts. I was on birth control pills for about 3 years (ortho tricyclen lo) and switched a few times off and on due to insurance. I recently went off of them because I thought they may have been contributing to my symptoms even though for 3 years I never had the symptoms before, and I was also experiencing brown discharge and unusually short or discolored periods. I’ve been to gynecologists several times in the last few months, got tested for everything from yeast infections, to BV, to UTIs, STDs, you name it. All negative. I took three different antibiotics, Clindesse cream which made my vagina swell up like a balloon, and then Cipro and Tindamax for bacterial infections I didn’t even test positive for but thought maybe they were just false negatives. I had an ultrasound done which showed nothing. I’m still experiencing this burning, sore feeling from the pubis mons to the insides. My symptoms shift from time to time which is weird because some days it will be more itchy or more burny, some times when I pee it burns and sometimes it feels perfectly fine. I never took a good look at my vaginal vestibule before, but it looks larger, maybe swollen. I can’t really wear pants anymore, usually it isn’t really bad when I’m walking or laying down but when I’m sitting or cross legs it feels so uncomfortable. It feels like it’s burning from the inside to the outside. When I touch it, there is no point pain or anything, just a generalized feeling of burning and soreness. The inner labial tissue feels almost thin. Sometimes it gets really dry, but I tend to have excessive vaginal discharge, smooth and watery. It doesn’t really hurt when I don’t wear underwear, lay down and keep legs open. Sex feels tight, and burns like hell afterwards. I’ve been reading god knows how much information about the underlying cause. I have all these theories that I can’t figure out… maybe it’s systemic yeast or that yeast that grows under the skin, but all I know is my tests keep coming back negative on cultures for yeast. I thought maybe it might be allergies to something that I’m unaware of, but I stopped using soaps that irritate, all I ever wore was cotton underwear, and my detergent is natural. I’m scheduled for a biopsy tomorrow I guess to rule out herpes or some skin infection although at this rate that will probably be negative too, especially since I’m experiencing this pain on the inside as well it doesn’t sound dermatological. I have no idea what to do.. I thought about seeing an allergist/immunologist to see if I have some kind of elevated levels of candida antigens or some other allergies I’m unaware of. I can’t tell if it might be too much yeast, or too much oxalates… and both diets are complete opposite so for me to do both at the same time means I can’t really eat much of anything, and a yeast-free diet seems almost impossible especially when I don’t even know for sure if that’s it. I’m so depressed about it though, because it’s putting a real strain on my relationship and my mental health, I’m really depressed and stressed over it which I am sure is making the pain worse so I feel like it will never end. I wanted to see a specialist in this field but I haven’t been able to find one that is covered by my insurance or at least has reasonable prices and I live in the Washington DC/Maryland area. A consultation alone with a vulvar pain specialist in my area was $350 without insurance. =( I don’t know what I should be doing… is it allergies, or nerve damage, too much yeast, too much oxalates? The possibilities seem endless and I don’t know where to start. I’m worried I damaged myself from the years of birth control pills, I didn’t really have too much trouble with recurrent yeast infections before although I did get them a few times in the past few years and treated them. Never had a UTI, or any other STD or bacterial infection except yeast. Sex has always been a little uncomfortable, mostly dry and tight especially since I was on birth control pills, and I’m concerned maybe after a year or so if sex like this I’ve permanently damaged myself, or how I’ll even know if its neurological or something else. I’m so overwhelmed…
CommentI’m not entirely sure if this is the condition I have, but all of a sudden a few months ago I started experiencing cyclic bouts of itching, burning, and pain, usually around menstruation. I didn’t think any of it I just assumed it was hormonal shifts. I was on birth control pills for about 3 years (ortho tricyclen lo) and switched a few times off and on due to insurance. I recently went off of them because I thought they may have been contributing to my symptoms even though for 3 years I never had the symptoms before, and I was also experiencing brown discharge and unusually short or discolored periods. I’ve been to gynecologists several times in the last few months, got tested for everything from yeast infections, to BV, to UTIs, STDs, you name it. All negative. I took three different antibiotics, Clindesse cream which made my vagina swell up like a balloon, and then Cipro and Tindamax for bacterial infections I didn’t even test positive for but thought maybe they were just false negatives. I had an ultrasound done which showed nothing. I’m still experiencing this burning, sore feeling from the pubis mons to the insides. My symptoms shift from time to time which is weird because some days it will be more itchy or more burny, some times when I pee it burns and sometimes it feels perfectly fine. I never took a good look at my vaginal vestibule before, but it looks larger, maybe swollen. I can’t really wear pants anymore, usually it isn’t really bad when I’m walking or laying down but when I’m sitting or cross legs it feels so uncomfortable. It feels like it’s burning from the inside to the outside. When I touch it, there is no point pain or anything, just a generalized feeling of burning and soreness. The inner labial tissue feels almost thin. Sometimes it gets really dry, but I tend to have excessive vaginal discharge, smooth and watery. It doesn’t really hurt when I don’t wear underwear, lay down and keep legs open. Sex feels tight, and burns like hell afterwards. I’ve been reading god knows how much information about the underlying cause. I have all these theories that I can’t figure out… maybe it’s systemic yeast or that yeast that grows under the skin, but all I know is my tests keep coming back negative on cultures for yeast. I thought maybe it might be allergies to something that I’m unaware of, but I stopped using soaps that irritate, all I ever wore was cotton underwear, and my detergent is natural. I’m scheduled for a biopsy tomorrow I guess to rule out herpes or some skin infection although at this rate that will probably be negative too, especially since I’m experiencing this pain on the inside as well it doesn’t sound dermatological. I have no idea what to do.. I thought about seeing an allergist/immunologist to see if I have some kind of elevated levels of candida antigens or some other allergies I’m unaware of. I can’t tell if it might be too much yeast, or too much oxalates… and both diets are complete opposite so for me to do both at the same time means I can’t really eat much of anything, and a yeast-free diet seems almost impossible especially when I don’t even know for sure if that’s it. I’m so depressed about it though, because it’s putting a real strain on my relationship and my mental health, I’m really depressed and stressed over it which I am sure is making the pain worse so I feel like it will never end. I wanted to see a specialist in this field but I haven’t been able to find one that is covered by my insurance or at least has reasonable prices and I live in the Washington DC/Maryland area. A consultation alone with a vulvar pain specialist in my area was $350 without insurance. =( I don’t know what I should be doing… is it allergies, or nerve damage, too much yeast, too much oxalates? The possibilities seem endless and I don’t know where to start. I’m worried I damaged myself from the years of birth control pills, I didn’t really have too much trouble with recurrent yeast infections before although I did get them a few times in the past few years and treated them. Never had a UTI, or any other STD or bacterial infection except yeast. Sex has always been a little uncomfortable, mostly dry and tight especially since I was on birth control pills, and I’m concerned maybe after a year or so if sex like this I’ve permanently damaged myself, or how I’ll even know if its neurological or something else. I’m so overwhelmed…
CommentTo SadMEL: I'd like to address some of your thoughts and concerns. First of all if you have the time read past guestbooks starting at 13. My wife took The Pill for twenty years and when she stopped her problems of thinning tissue started. Prior to that she did have the burning and occassional yeast and UTI problems. Your symptoms do sound like Vulvodynia, very real but a mystery to define the cause and treat. Regarding your burning, inflammed skin, if it was due to trama resulting from sex and not enough lubricant I believe the body is capable of healing from such damage if given time. You can easily figure out if sex is the culprit by abstaining for a month of so and when you start use plenty of lubricant. In my experience Vulvodynia causes damage to the skin and not sex, although sex does make it worse. Vulvodynia experts will charge you a lot of money only to prescribe one of several antidepressants designed to "calm" the nerves and reduce your symptoms of burning, swelling and pain. Don't torture yourself and accept pain relief if you are suffering and can't get some answers and treatment that works. If your skin is raw and inflammed, don't have sex! I have refused to have sex with my wife at times even though she was willing to accomdate me. She should feel good and not be painful or cause pain. I know it is upsetting and frustrating for both you and your partner but accept the situation and work with it. When my wife is not having flarere intimate, when I see she is having a problem we hold off. The past guestbooks contain many personal stories and useful information. You are not alone and you need to slow down in your quest for answers. Please involve your mate or husband? Yes, us guys get frustrated and angry when we can't have sex, but we must also support the women we care about. Good luck and stay in touch here.
CommentFor anyone in Florida, my gyn told me of a newer Dr. in the Tampa Bay area who is very impressive and has helped a few of her other patients with conditions that other gyn's haven't been able to figure out. I have an appointment with him tomorrow afternoon as after 4 years my vestibulitis has flared up again. I was diagnosed 6 years ago and then after 2 years it just went away for the most part, a little flare here and there for a day or even 4, worse around ovulation. But it has now lasted 2 months and if he can figure this out, then he will be my hero. I was wearing jeans daily and now am b ack in those awful dresses again.
CommentFor Cris above, my urine is very acid too! About 5.0 in the morning. Maybe you are on to something. hmmm Some ladies have posted on Evergreen Nutritionals about Acid Redux for vulvodynia. I think I will try some and see if it helps, if it doesn't then I got a good dose of calcium and magnesium by taking it. I eat alot of sweets and meat so maybe this is a problem.
Commenthttp://health.usf.edu/medicine/obgyn/facstaf/hoyte.htm I forgot to post the link for that Dr. His name is Lennox Hoyte and hes based out of USF.
CommentHi everyone....haven't posted here in a while. Although my pain is for the most part under control, I still have occasional bouts of itching. My symptoms are very similar to yours Sad Mel. I have heard of so many remedies, such as douching with baking soda, but am in fear because I have read that it can actually make things worse. I do notice a flare up around my menstrual cycle, both before and after. I also have the same discharge. I was just at my gyno last week and she said it is normal. (?) Does anyone have anything they do or take to manage the itching? Thanks Holly
CommentHi, This is my first time posting but I have suffered with this terrible affliction for approximately 10 years. I am now 50 years old and have experienced this problem both as pre-menopausal and post-menopausa. My first problems started at around age 40 when I was diagnosed with bacterial vaginosis and treated with Metrogel. The stuff burned like battery acid but I was told by my doctor to continue using it even if it caused some "minor discomfort". After this I was very irritated and was told that I had yeast and was prescribed diflucan. After no relief I was told to us an over the counter cream. This began a six year nightmare of alternating between antibiotics and yeast creams. I saw too many doctors to count and tried every treatment known to man along with a biopsy and a dozen cultured which were all negative. The last"pain specialist" I saw burned two holes into my vulva area with silver nitrate in the hopes of opening my bartholin glands. (There was no indication that the glands were blocked). and finally scheduled vulvar surgery for me. At this point I said enough and refused the surgery at the last minute. At this point my vulvar area was red, raw, and burned 24 hours a day. I sat at a desk all day and it was absolute torture. Nothing worked and I made the observation that most topical creams (yeast medications, cortizone creams, steroid creams, estrogen creams) started out like they were going to help and then after a couple of days the pain came back full force and then actually got worse. I finally decided to do nothing more than plain water in the shower. I gritted my teeth and suffered through the pain. After several months the pain improved and lessened to about 10 to 20% of what it had been. I still had flairs about 2 days before my period. It continued along this way for about the last four years and I was able to function. About two years ago I went through menopause and for health reasons on my husband's part we stopped having sex. Everything was fine until my husband's doctor decided to put him on Cialis to restore his sex life. Guess what? Because of the dryness brought on by the menopause I tried to us a lubricant during sex. The vulvodynia returned immediately and shows no sign of improving. I think this thing is some kind of mutated stain of fungus that simply has not been identified yet and cannot be killed with medications directed at candida. Just my opinion. l
CommentI saw the specialist I mentioned in my post yesterday . He was very nice. the first thing he said to me was "This is NOT in your head". He did a cath and now my urethra is bothering me. He said he has had some success with treating vulvodynia but it is very hard to find what the cause is. He said that you can have pain in one area of the body and that pain is being caused by another area on the body completely. He pressed on many areas of my body because he believes some of us siffer from musculoskeletal problems causing our VV. I have had awful sensitivity running down my left outer thigh for years, pretty much as long as the VV . He said that the muscles and nerves in that area run into the pelvis. He has put me on Lyrica 50mg 3 times a day. He said I will know if it working in a week. I just got online and read up on it and women are complaining of pretty scary side effects. My insurance only covers generic drugs, Blue Cross Blue Shield of Florida, and a 30 day supply was $217!! I got enough for a week, so I can see if it is going to work and to see if I suffer any of the unpleasant side effects, urinary problems, weight gain since you always feel hungry and water retention as well as a spaced out feeling and headaches. Ill let you all know how I feel on it in a few days. I do not like taking things like this. He did a very thorough exam, there was not an orifice down there that he did not put something in. My anus feels healthy, so glad to know that! LOL My vulva is burning so much worse now. He was quite rough, but he had so see if areas that were pushed were painful. He also said my pelvic floor muscles were weak and wants me to see a pelvic floor therapist to try and strengthen the muscles. I have to e-mail him personally in a week and let him know how I feel on the Lyrica. He said he is not a Dr. that expects you in his office all the time which is good because I can't afford that. I am still going to try to alkalize myself since my urine is acidic and the person above said the same thing. I don't see that anyone else has checked their urine. I would really like to see what others here have to say about that. To see if we are all acidic. You have to check your first potty in the morning. Go a little and then dip the strip into the stream. Please, please everyone, try this so we can compare our readings to yours. I am very acidic. The strips are very cheap. God bless all of you and my sympathies on what we are all going thru.
CommentTo Holly: You said you had similar symptoms to me... What did you do to make them go away? Or did it just disappear on its own? Any input would be appreciated. Thank you!
CommentTo Holly: You said you had similar symptoms to me... What did you do to make them go away? Or did it just disappear on its own? Any input would be appreciated. Thank you!
CommentDoes anyone know a good vulvar pain specialist in the MD/VA/DC area? I've heard of a Dr. Treene in DC but she doesn't take my insurance (BlueCross BlueShield.) Thank you!
CommentI saw Dr. Hoyte on Friday in Tampa, Fl. He said he has helped a few women with vulvodynia, but not all of them. He feels my problem is musculoskeletal based on pain in other areas of the body that share nervefs and muscles with the pelvic area. I do not h ave pelvic pain, only vulva burning. I do have a weird white creamy discharge that seems to burn my skin. It shows nothing abnormal in cultures that are sent out to a lab. Someone in I think it was guestbook 13 mentioned this as well. She said that we seem to burn wherever that discharge sits. This is true for me, I only have that discharge when I flare up. Doc put me on Lyrica 50mg 3 times a day and try it for a week and e-mail him. I have not had any relief of pain, and I feel TERRIBLE. I am fatigued, dizzy anad have a "high" feeling and my muscles are constantly twitching, especially in my stomach. I hate this drug and even if it made the pain go away, which so far it hasn't, I don't know if I could handle being on it forever with these side effects. Oh, it also makes my face and neck itch, I do not have a rash or hives though so I am toughing it out just to tell him I did. I don't know where I go from here. Just going to continue to see a chiropractor for my SI joint and all of the painful lumps all over my body that he painfully rubs out.
CommentHi, Just wondering what experiences anyone else might have had with Rephresh gel. After about a four year remission I have been suffering for the past few months with very severe burning pain again. I tried the Rephresh gel on Friday evening and by yesterday was almost completely pain free. The strange thing about this stuff is that it is promoted to treat odor which I have never had. Now I have a slightly sour odor and no pain. (I will take anything over the pain). It increased the burning slightly the first night but then started to lessen by Saturday evening and almost disappeared by Sunday. It comes in a four pack (each treatment said to work for 3 days) and now I wonder how long to use it. I'm afraid that if I quit the pain will come back or that If I continue too long it will be too much treatment and cause some kind of damage.
CommentTo Sad Mel- Honestly I really don't have any magical cure. It comes and goes. When I'm in a flare up I rub an ice cube over the area which does provide relief. I try to make sure the area is clean; when I experience the white discharge I use a cotton ball and wipe away any fluids. This also helps. I find my worse time is when I'm walking in a store, the friction can be miserable.
CommentHello everyone -- I haven't written in a while but thought I would put my two cents in. I have had some type of itching burning or pain for the last year. Until about March of this year it was really painful at times and I was so upset and depressed. I did about 4 months of Elavil and also use Lidocaine gel at night and still continue to do so -- but I don't panic when I miss a night. For the most part my life has returned to normal -- but I am very aware of "down there" I am able to sit and wear clothes as I see fit. I do notice a difference if I wear jeans too many days in a row. I got rid of all my tight jeans -- whether it was because of the discomfort or they just don't feel right I'm not sure. I too have been through a battery of tests and multiple doctors and finally found one in Chicago that specializes in this and pelvic pain. I don't have pain when I have sex which I am thankful for. I am a RN also and have done my own research as well as picked the brain of my doctor. I'd advise everyone not to use anything down there unless directed by a MD and even with that I would be careful. Your ph can change from day to day and doesn't mean you have an infection -- who checks their ph everyday -- no one!! This is more a nerve problem and in some cases can involve the muscles too. Accupuncture and therapy can be of help. Medications can work -- I had some help with the Elavil -- but I think it helped my depression mostly. Once you realize that you will not die from this -- that helps -- you need to learn to live with it -- which is not always easy. I always try to remember how bad I felt in the beginning and how much I have improved -- that helps. Also, be careful what you do -- no bike riding -- no unusually vigorous sex, no fancy soaps, powders or feminine products. I use Natra pads when I get my period -- I only use dove soap and I don't use it down there and I always rinse with clear water. Be mindful of the clothes you wear -- in the winter corduroys have been a nice replacement for jeans and in the summer -- lots of cotton. Rinse after swimming and don't sit in a wet bathing suit for hours on end. An understanding partner has done a world of good too!! When I feel kind of "scratchy" and uncomfortable its a no go for sex and sometimes I say what the heck and don't really notice a difference. Patience and finding the right MD. In Chicago there is Dr. Tu and Dr. Senapati -- they are wonderful and know exactly what you mean and they will spend the time with you and wipe your tears. I can only tell you that I have shed many of them and if my advice can help one person that will make it all worth it. Goodluck ladies and have a blessed holiday season. I hope 2009 brings better days for all of us sufferers.
CommentHi, Cheryl, I would like to respectively disagree with you. Not all cases of vulvodynia ( vulvar pain) are caused by nerve damage or muscle problems. The only thing the medical profession can agree on is that they simply don't have a cure. There are many different forms of treatment and some work on some people and not on others. I still have a problem believing that nerve endings not visible to the eye can cause red raw irritated skin that in some cases shows blistereing or rashes. Some people have been helped by treatments aimed at yeast sensitivity or hormonal problems. To some of us our PH balance can be very important since acid burns. Especially in urine and vaginal secretions. It's attitudes in the medical profession that "one treatment fits all" and we should "learn to live with it" that prevents progress in the treatment of this horrible condition!
CommentTO CRR: I've been on Lyrica 150 mg bid for over two months now for vulvodynia. I had a lot of problems with side effects when I first started taking it - dizziness, tiredness, forgetfulness and just plain "feeling weird". However, my side effects diminished considerably after about a month and now they are completely gone. Unfortunatlely, it has not helped with my pain, so I am switching to Cymbalta (which I think Holly has had some success with???). Anyhow, I guess my point is that maybe it is worth sticking with the Lyrica for awhile, especially if it is helping with your pain, because it's possible that your side effects may get better. TO JUDY: I tried Rephresh early on with my vulvodynia and I had the same experience as you. It seemed to work really well the first couple of times I used it and I thought I had found the miracle cure. However, it quit working for me after two or three times and I also had issues with the "white chunks", which you can read about ad nauseum if you google Rephresh. Everyone is different, so hopefully it will continue to work for you. Best of luck!
CommentSnapdragon -- I do understand your frustration because I am a sufferer too. Yes, yeast and other conditions can cause the redness inflammation etc. Lichen Sclerosis is a terrible condition. Vulvadynia can be the result of all these problems complicating things even further. I did not intend for people to "live with it". But you do need to find a way to live beyond it. It controlled my life for a good part of a year -- between meds, treatments, and lots of good advice from a trusted physician I am able to resume some normalcy. I feel "down there" every day -- some days worse than others -- but I refuse to be paralyzed by it. That was part of the healing process. The biggest thing that we can do is find the right doctor who understands and willing to find what works for you as an individual. My contributing to this guestbook is to help others and share my story and information. Maybe someone out there feels the same way so please don't knock anyones contributions. Goodluck and I hope you find what works for you.
CommentSnapdragon -- I do understand your frustration because I am a sufferer too. Yes, yeast and other conditions can cause the redness inflammation etc. Lichen Sclerosis is a terrible condition. Vulvadynia can be the result of all these problems complicating things even further. I did not intend for people to "live with it". But you do need to find a way to live beyond it. It controlled my life for a good part of a year -- between meds, treatments, and lots of good advice from a trusted physician I am able to resume some normalcy. I feel "down there" every day -- some days worse than others -- but I refuse to be paralyzed by it. That was part of the healing process. The biggest thing that we can do is find the right doctor who understands and willing to find what works for you as an individual. My contributing to this guestbook is to help others and share my story and information. Maybe someone out there feels the same way so please don't knock anyones contributions. Goodluck and I hope you find what works for you.
CommentKeely, There was no way possible that I could stick with the Lyrica AT ALL. I was itching and broke out in a rahs, these are symptoms of a drug allergy. I'll take a pass. I also used RepHresh especially after my periods, because I was not flaring and was at a pain level 0-3 most days for years ( I do not know what made my pain pretty much go away for those years, it just did). I always had more pain after my period so I used repHresh and it really helped after just one tube. I got the chunky discharge too, its supposedly skin cells and would go away as you continue on the gel and the vagina balanced out. As soon as this flare started a few months ago, I could no longer tolerate the repHresh at all and I can no longer tolerate my lidocaine ointment either. It causes my vulvar skin to peel and that in turn causes more pain, if that is possible. I have to e-mail the Dr. tomorrow and let him know I can not take the Lyrica and see what he wants me to do.
CommentJudy, you can use repHresh forever, it is just not recommended during your period. I had 4 years of pain relief as well and was using repHresh after my periods since I still had some pain after and figured the blood changed my vagina's pH. If it's helping girl, I say keep on truckin!! I am trying to balance my entire bodies pH, which is so much harder than you would think, I ALSO have nerve pain in my left thigh and my chiro AND this vulvar specialist i just went to said the nerves and muscles from the thigh run into the pelvis. I do not have pelvic pain, just vulvar pain. Burning actually so to Cherly and snapdragon, you both can be correct. An imbalanced overall pH in our bodies cause all sorts of degenerative conditions including the inflammation of muscles and nerves and acidic urine and vaginal fluids can cause rashes, blisters, fungi, bacteria and the list goes on and on and on. I am presently seeing a chiro weekly for my curvy, twisty spine, my SI joint is out of whack and so he adjusts me, then we do ultrasound therapy on my SI joint and then we just started Electro-stim which is electrical currents that run down my leg (this sorta "zaps" the nerves). I am also TRYING really hard to alklaize my body, but have not been able to go an entire day without eating somehting acidic cause I am not used to eating "raw" or alkalizing. I will see what this "specialist" wants to try on me next because he is all about my problem being musculoskeletal. I am just sensitive to chemical drugs. If his next 2 things dn't work, I will try a nerve tonic I saw at the health food store. Also, medications throw off our bodies pH and so does stress and so does ovulation and the higher amount of estrogen we have before our periods. Ovulation and the week before our periods is also a time when our bodies have trouble with digestion so we become more acidic. I have learned alot the oast few weeks, now if the things I learned can heal me then I will be indebted to those who have taught me these things. Also, it is better to try to alkalize first and work on killing yeast, bacteria, viruses etc. afterwards. These things thrive in an acidic environment and are easier to kill if we are more alkaline. Also, again, PLEASE TEST YOUR URINE PH IN THE MORNING AND POST IT HERE. Its so easy I don't understand why none of you are willing to do this. If your doctors told you to pee on a stick I am sure most of you would, but if a fellow sufferer asks it so we can see if there is a link, noone wants to respond. Makes me wonder why.
CommentTo CCR I get confused with PH. Is the higher the PH the lower the acid or vice versa? Also does yeast thrive in higher acid? I thought I read somewhere that bacteria thrives in lower acid. Anyway I have found that rinsing with a little bit of baking soda water after urinating helps relieve the burn. Do you believe that the high acid in the body causes the sore area to begin with or does it prevent the skin from healing? After the second round with the Rephresh I started to have the burning again and it didn't go away at the end of the three day treatment like the first time. Oh well I still think it is somewhat better than before I tried it.
CommentJUDY-You do not want acidic urine. On the back of the box of test strips it will show you what you want your pH to be. Usually 6.5 on your first pee of the morning and 7 on your last. 7 is neutral and that is a perfect pH. Anything over 7 is too alkaline and that is also bad. Yeast, fungus, viruses, bacterias all thrive in an acidic environment. That is why you should start by alkalizing your body FIRST and once you get that down THEN start to deal withthe yeast. It is easier to get rid of the evil invaders when your bodies pH is optimal. I have been peeling on my vulva for 2 days now and even though I have eaten well, I am so acidic. Your digestion is not very good during ovulation anad just before your period. I am scheduled for my period today or tomorrow! Here are a few links you should check out and then if you are interrested, get some test strips. The diet is HARD. The one site is by a vulvodynia sufferer. She only has trouble 2 days before her period now. JUST LIKE I AM. http://www.vulvadyniasolution.com/ Here is a good one on pH http://www.naturalhealthschool.com/acid-alkaline.html There are somoe omen on another site that have said their pH is acidic, I am not an expert on the pH diet by a long shot. It is hard and I am trying really hard. Like tomatoes, lemons and beets are VERY alkalizing, but they tend to bother some of us with VV. I do not know why. They just do. I have checked out books at the library and do research online. I got a supposed alkaline bread Genesis 1:29 bread at the health food store, and I think it made me burn. I popped it in the freezer and will try it another time. It holds for 6 months frozen. I just really want women to test themselves in the morning so I can see if there is something we really have in common. My urine burns my skin and so does my vag fluids. Laura who runs the first site I linked you to says that is because our fluids are acidic. Wherever my urine or vag fluids sit, is where I am in pain so it makes so much sense to me. Is is my cure? I have NO CLUE. I sure hope so!! When I was in my 20's I lived on salads and raw veggies. I wanted to be thin and hot LOL I was never sick. After I had my son, I started eating whatever and look where I am. I am out of options and pray I accidently stumbled across sometihng that will either cure me or at least put me baack to where I was the last 4 years, at a pain level where I could wear pants and have sex and not really notice it. I DID notice I burned when ovulating and just before my period the last few years tho, but it always went away and I was fine. 3 months ago it came back at my period and then never went away. Look over those sites. I have more I can post if you want. Google acidic bodies and fungus or yeast or bacteria or even vulvodynia! Alkaline foods are raw. Check out the books The pH Miracle b y Robert Young, Alkalize or Die by Theodore Baroody (I havent read this one yet) and The acid/alkaline diet by Christopher Vasey
CommentSorry if this is a repeat... had some problems submitting a post... I'm going on 13 years of off/on vulvar vestibulitis symptoms that began with what I thought was yeast. Had both overall and localized burning and irritation. Went through variety of treatments including anti-fungals, antibiotics, antivirals, aldara, small section of skin removed, physical therapy, cortisone creams and injections, etc. Most recent biopsy shows hyperplasia. My symtoms have kind of changed over the years. I don't have general burning anymore. Irritation occurs with touch, sex, tight pants, sitting, things like that and is very localized. what may have been a simple yeast infection or allergy at one point, seems to have developed into a permanent damaged area of skin, very localized in one spot on the vulva. It is always sentive to touch and somewhat more red than the surrounding, normal skin. It did at one point, seem worse around my period, was definitely aggravated by birth control pills and pregnancy but now it's pretty much the same all the time. It's bearable but interferes with my sex life. As a side note, during the 13 years that I've had symptoms, I've gone for probably 8 years doing absolutely nothing about it (no treatments, nothing) until a biopsy about a year ago. Since then I've used the standard treatment for hyperplasia, which is corticosteriod cream, with maybe 10% improvement. I do remember several years ago having corticosteriod injections in addition to cream which relieved my symptoms completely for several months. I think I may try that again. I also have a close friend with very similar symptoms to mine who got wonderful results with injections of interferon-A. I'm considering that also. It seems like I had some success with low-oxalate diet, but I couldn't stick to it. I'm also considering an antidepresant, although I see a lot of mixed results here. My do-nothing strategy definitely did not fix the problem so I guess it's time to start trying things again.
CommentHi, Just tried a new lubricant called Carrageenan. It said it was all natural, glycerine free, gentle etc.. I found it to be much more irritating than Ky gel so I typed "Carrageenan irritant" into the computer and started pulling up entries about how carrageenan is used to deliberately irritate mouse paws in scientific experiments. Why in the world would they use something like that in a personal lubricant? Just passing along my experience. After a while the cost of trying these things adds up.
CommentHi there Just an update on my VV. I have localised pain in the small area around the urethra. Its been like this for 6 years. I am 27. Isn't this just a nasty disease??? I feel like it has become so much part of my life and identity that I dont know what I'd do without it or who I would be - isn't that sad ladies?!! Chronic pain consumes your thoughts all day, everyday. I believe my localised pain is as a result of repeated yeast infections, that somehow the skin and tissue there became permanently damaged from all the bacteria and treatments over the years. Like KIM, I have often left my condition untreated for months to years, which is why it has taken so long to get help. Its just so emotionally taxing to try all these different treatments all the time. KIM - have you considered surgery? There is an operation called a vestibulectomy that seems to be very successful for localised pain in the vestibule. I am considering having it done as a last resort as no treatment has ever worked for me completely. I am currently on cymbalta. I would recommend this drug to you all, but stay on max dose for at least 3 months to see a result. It does not take my pain away, but reduces the type and level of pain I experience. I am also able to have sex occasionally without too much discomfort ( lets say it no longer makes me suicidal!!!). I feel like Cymbalta has helped me to continue with a normal life despite the VV. I still want to try the surgery though, as I am not so happy about taking such heavy medication for the rest of my life. Good luck to you all and thanks for posting!
CommentTo Josy- Glad to hear you are getting some relief. I am also on cymbalta. It does help you to maintain a somewhat normal life. I have been on it for about 4 mos now. Keep in touch and let us know how you are doing. Holly
CommentI have been reading this tonight and crying at the same time. I know that most of you know what I mean. I have been suffering from pain/burning during urination and sex and well, all the time it just hurts down there, tampons hurt to insert as well as a penis, right as you go in. I frequently pee and feel like I have a full bladder at all times and it burns and stings in the bladder area also, terrible pain above the pubic bone and on the lower left abdomen. I wonder if anyone else has had this, do I have vulvodynia and IC? I am so frustrated. I am pregnant too, so I am not able to take things that would normally help. Any suggestions or thoughts from anyone? I live in Connecticut, anyone know of anyone I could go see? I am desperate, this is affecting my day to day life and my attitude. I am depressed and frustrated and well, you all know what I am saying. Thank you for this website and your stories and help.
CommentTo Tara S: Very sorry you are going through such pain during your pregnancy. The Vulvodynia expert in Ct used to be D. Benson Horowitz in hartford but I believe he is retired and a female doctor has taken his practice over. The fact that you are pregnant may contribute to the many symptoms you are experiencing. Is this your first pregnancy? Have you had the pain and bladder discomfort before? Have you seen a urologist? I think right now your priorities must be to reduce your pain and stress levels for both yourself and your baby. If this means abstaining from sex at least for the time being then that's what you need to do. I know this is not something your husband will be happy with but what is more important ? There could be several different things happening at the same time causing these symptoms, pressure on your bladder from the baby, changes in hormone levels which may affect your vulva/vagina? I would suggest you talk to your obgyn and see a good urologist before you consider a Vulvodynia expert. My wife went throught three pregnancies and we were intimate throughout all of them and it was tender, loving and intimate, but lovemaking should not be painful! Take care of yourself now before any futher damage or pain takes place. My best to you, your husband and baby to be. Frank
CommentTo Tara S: Very sorry you are going through such pain during your pregnancy. The Vulvodynia expert in Ct used to be D. Benson Horowitz in hartford but I believe he is retired and a female doctor has taken his practice over. The fact that you are pregnant may contribute to the many symptoms you are experiencing. Is this your first pregnancy? Have you had the pain and bladder discomfort before? Have you seen a urologist? I think right now your priorities must be to reduce your pain and stress levels for both yourself and your baby. If this means abstaining from sex at least for the time being then that's what you need to do. I know this is not something your husband will be happy with but what is more important ? There could be several different things happening at the same time causing these symptoms, pressure on your bladder from the baby, changes in hormone levels which may affect your vulva/vagina? I would suggest you talk to your obgyn and see a good urologist before you consider a Vulvodynia expert. My wife went throught three pregnancies and we were intimate throughout all of them and it was tender, loving and intimate, but lovemaking should not be painful! Take care of yourself now before any futher damage or pain takes place. My best to you, your husband and baby to be. Frank
CommentTara, I used to have all of those exact same symptoms when I had vulvodynia. Oh, I remember the pressure and feeling like I had to pee all the time...it was horrible. THen, I found out that I had pelvic floor dysfunction, which can cause vulvodynia. When your muscles are all out of whack, then there is this muscle that spasms around the bladder that makes you feel like your bladder is full and that you need to go to the bathroom all the time.
CommentJOSEY AND TARA-Josey, I was curious when you saiad your pain was localized to around your urethra. I am looking into alkalizing my body and since my urine is acidic and pee touches our vulvas, especially right there near the urethra....check out this website www.vulvadyniasolution.com This site is good for Tara as well and Tara you might want to check into the book "Solving the Interstitial Cystitis Puzzle" by Amrit Willis. You can also do a google search and there is a Yahoo group dedicated to healing your IC following her cure. Just look up The IC puzzle. I have some urethra irritation, that feels like it is just inside the opening and it seems to irritate when my urine is most acidic. The acid/alkaline diet has been touch for me, I am a carnivore , but have had good minutes and even hours so far eating this way so I am hoping to have found something to take me back to at least where I was the last few years, almost pain free, having sex and wearing jeans and not sitting, crying and wearing dresses and having no sex with my gorgeous and sweet husband. The above link you should look into as well. I ahve now come across 3 women who are well from alkalizing, one right here in my town!!! I met her through our health food store owner. Thank God we were both not too embarrassed to talk about our pain to her or we would have never met. She also has the urethra and bladder irritation when she starts eating bad too often and then has to get her pH up fast and she also carries a bottle of a product by a company called Hyland's the product is Bladder irritation, it is a homeopathic. She takes those and pH drops for her water with her when she goes out of town. Alkaline eating is a new way of life, not a quick fix. Once you are well, you can expand you foods as long as you eat 80% alkaline. I eat a tiny bit of meat once a day. I used to eat meat for every meal, pizza, tomatoes almost daily (they are alkaline, but acid forming for some people and irritate VV) Lemons are VERY alkaline IN the body, but for us with VV they irritate for some reason, maybe the vitamin C. Try limes instead and see if they are ok. Laura, the girl from the above site could use them and so can I. Always add a new food, one at a time and see how you react. I can eat spinach, but some women can;t. I hope you feel better soon, I feel for you. I am miserable anytime my urethra and bladder act up so I can not imagine having IC. I alwys fear when mine acts up that it will never go away and the VV is bad enough to handle
CommentHi Everyone, I have been reading websites about my condition for years, going to different doctors who know less about VV than I do, and still the pain is there. Like most of you, my condition was diagnosed at the same time as a severe yeast infection... both of which I believe were triggered by soap getting into my vagina. Since then, I was 18 and I am 25 now, my VV has affected me so ino many ways: emotionally, physically, mentally, sexually... I went through the normal... "its yeast, now its bacteria, now its yeast, oh, actually, we believe you, it has to be vulvodynia" situations with my gyns and I think I ended up teaching some of these dr's more than they knew about the condition. My symptoms have varied over the years. Every once in a while for no apparrant reason I was fine, even enjoying sex like a normal person a few times when my VV decided to allow me a few short burst of pleasure (but now I know how much fun it is and I am not getting to have it!) but most of the time I was itching, burning, and raw... sometimes for no reason, other times from wearing a tight pair of pants, or I would on have pain during/after sex. I eventually realized about 18 months ago that things would get bad for me right around the start of my period - tampons! I would essentially be in pain for 3 weeks of my cycle... the week of my period when I was wearing the tampons and two weeks afterwards while my glands/skin was trying to recover from the all the chemicals and dyed cotton etc in tampons. I don't know if this will help anyone else on the site, but if you are able to use tampons, I ended up switching to the natural brands that are rayon free and have no chemicals in the cotton. I am telling you, I feel ALMOST like I don't even have the condition anymore... except of course when we bring sex into the picture. With the natural tampons, I don't itch or burn when they are in and I will get maybe a tad bit of itching when its over, only if I leave one in too long when I could have used a pad (all natural of course - get them at the health food store). Anyway... hopefully that helps someone out there! A few questions for everyone... and nice to meet you all, by the way! I feel like I know some of your stories so well now... I was wondering if anyone knew of a gyn who actually KNOWS more about VV than I do in Manhattan that I could see... I have tried a few treatments, none have worked. Now that I have switched to natural tampons, my pain is concentrated right at the opening in the glands and is something I experience primarily during sex (the story goes like this: we try it, it hurts and feels really tight the whole time, way too tight to be normal, it feels moist for him, but not for me, i grin and bare it, any movement that involves the penis moving in and out over the glands is dreadful, it stops because i can't take it anymore, burns for a long while, is sore and then the pain goes away after 12-24 hours until the next time we try) I was wondering if anyone else with similiar symptoms has tried pelvic therapy and seen it work. Erin's post from a while back talked about acupuncture and seeing a chiropractor and how that helped. I really don't want to use drugs and I don't want things to get worse again... has it helped anyone else? Thanks for reading my story. I have been dealing with this condition for 7 years and reading every one's posts has helped me tremendously already.
CommentMeghan, I live in East Hampton and use to live in Manhattan. There is an excellent physical therapist and an accupuncture that I could refer you to. Dr. Roberta Shapiro, but she has a long wait list and very expensive, but good, and an accupuncturist in the village who can help you. E-mail me. We will be driving for Florida today and I will answer you as soon as i get hold of a computer on one of our stops. Jenny
CommentThanks for all the comments above. I went to the doctor today and got nothing accomplished except more frustration. She basically patted my back and took more urine culture and vaginal culture tests, which will probably come back negative again. Frank, I did have these problems before pregnancy but they have gotten worse and worse with the pregnancy. Has anyone been pregnant and dealt with this, either vulvodynia or IC? What have you done to help your suffering? So frustrating!!!!! Thanks again for the help everyone.
CommentHi ladies! I have just been diagnosed with vestibular adenitis. I've had the symptoms for 3 months now. It all started after rough fingering from b/f and I believe a yeast infection. B/F and I have broken up- not because of this- I haven't told him. I am encouraged about stories of women with supportive partners. I am seeing a specialist next month, but I'm scared that most men won't put up with this. I now find it painful just to sit! I'm ok if I lie down all day or sit very minimally and with a donut shaped cushion. Any advice or ideas are welcome. I'm worried that I'll be single forever if I can't get treated. Thanks for reading! Robin
CommentTo Robin: Welcome to the site and sorry you are suffering. Most of us men are jerks anyway so for the moment think about getting better and not being alone! Your ex BF probably has watched too much porn because in real life the rough stuff leads to damaged tissue, gentle to moderate can result in pleasure without harm. If there is one thing I have learned in my years of reading here and being married it is that most women are all too willing to please a man even if it hurts, which it should not. Just a few suggestions and I hope you are not offended, do not use any soap near the painful area, cotton underwear and loose fitting clothes. Give yourself a chance to heal, and if you must live with some level of discomfort or pain, you decide what sexual activity is appropriate for you and communicate it to your partner. I love my wife and after twenty six years together I still want to make love a couple times a day, but I understand she is not capable of that anymore. I accept what ever she is up for in terms of lovemaking and while I'm frustrated at times that's life and I deal with it. The most important thing for you right now is taking care of YOU. I wish you the best.
CommentI can relate to a lot of what has been said. I have been to 3 ob/gyns and a general practitioner. The problem started around 3 months ago. I went to the first doctor and she diagnosed me with a yeast infection. I also was tested for all STD's and was found negative for everything. The itching and burning continued and when I went back she said I had BV. She prescribed Clindesse for this. I went back two weeks later and she said I was still red but everything was clear so it must have been my soaps/detergents, etc. I changed everything, soap (Aveeno, switched to a mild detergent, bought new cotton underwear.) It was more of an irritated itching feeling then. I continued to feel the symptoms and went to a new doctor. At this point my insurnace ran out so I went to a clinic (a waste of money) She examined me, asked same questions about detergents/saops. She said she saw yeast and gave me an internal and external prescription. It provided little relief if any. I called a few days later to tell her and she prescribed something for a UTI (I had no symtoms) Then I received a referral from a friend for her doctor-an OB/gyn. I went to him and he said it was another "very bad" yeast infection. He prescribed boric acid suppositories for 2 weeks twice a day. It seemed to help at first but by the 12 day I was still feeling really itchy and irritated. My doctor told me to come in. He examined me and did an in office culture and said the yeast was gone. He did say I was still very irritated. Now he wants to do a skin biopsy. My vagina is itchy and irritated and my rectum. I also have some itching on the back of my legs (has anyone else experienced this ) I am going back on Tuesday for the biopsy. His nurse also said he wants to do a D and C. I am really opposed to this because it seems very invasive and I have to pay out of pocket. He also scared me because he said it might be herpes (which I was tested for 2 months ago and came back negative) This is affecting my mental health, my relationship. I have also tried Estrace and a steroid cream. They provide temporary relief. When I sit for a long period of time, the pain begins. It's like a pressure. Can anyone relate to this? I am still worried its an undiagnosed STD.
CommentHi Heather -- yes you are getting the runaround. OB/Gynes feel the need to find some explanation for your symptoms and most won't admit that vulvodynia exist. I must have went to the Dr 20 times in three months. Try dove soap for sensitive skin to wash with and don't wash down there just spray with clear water to rinse well. Use All free and Clear detergent -- seems to be the one with the least stuff in it and double rinse your undies and hang dry -- or no dryer sheets. This will limit your exposure to external things. Next -- try to find a UroGyne in your area -- you don't say where you live -- many people that post on this website have doctors who do believe and treat for vulvodynia in different parts of the country as well as Canada and the UK. Like yourself, i came in contact with some type of soap or detergent and it started a whole load of trouble -- after my own research I saw a urogyne who referred me to a Gyne who did their fellowship at the vulvar pain clinic in Michigan -- Eureka!!! I found some help after 5 months. I had a lott of pain sitting and couldn't tolerate a lot of clothing or even fabrics from certain chairs. I had burning all across my buttocks but only pain in the vestibule of my vagina. I had tests, biopsies and more tests. Several antibiotics etc -- what a nightmare!!! Finally used lidocaine gel and Elavil for 4 months and got my life on track again. Not depressed any more, having sex and can sit and wear what I want. Yes, I do still feel some burning on a daily basis but I can ignore it and i keep myself busy and that helps -- if I get nervous I take a minimal amount of Xanax to calm me down -- I only do that once a month. Certain times of the month can be worse -- right after my period and then it seems to get better. Its a lousy thing to have and hopefully can find the right MD and get a diagnosis. Hang in there. Also to Robin -- hang in there don't get down try to find an answer and all men are not jerks -- most are good -- if they are a jerk than they are not worth being with. Goodluck
CommentTo All: I have posted this warning in the past but I want to repeat myself in the hopes of raising awareness. My wife used Estrace several times over the last few years in an attempt to prevent the thinning of her skin and recurrent tear to the vulva at the six o'clock position. During this time she was still getting her period and the Estrace never did help with the tear. Last April she was diagnosed with breast cancer and the type she had was "estrogen sensitive". That means estrogen makes the cancer grow, so taking Estrace was not a good thing. Please ask questions, and if you are going to take Estrace or any other estrogen supplement make sure you have routine mamograms and breast exams. We were lucky because the mamogram showed nothing, it was through a breast exam by my wife's gyn that the tumor was discovered! She completed chemo, radiation and is currently fine and taking tamoxifen to futher reduce the estrogen in her body.
CommentHi everyone, it has been awhile since I posted. I have L S and I am wondering has anyone ever had spots of blood.? I was at the mall with a friend and felt really sore and irritated,more than most times. I rubbed the Vulva area slightly and when I went home I found some blood on my panty. Can anyone tell me if they had the same occurance. Thanks Amzy
CommentTo Heather: I have some of the same symptoms as you. Although I don't have many tips or suggestions, I can atleast tell you you're not alone. I have been diagnosed with vulvodynia. I tend to be at my worst around my menstrual cycle, 1 wk before and 1 wk or so after. Also though it might sound ridiculous, I do find some relief with rubbing an icecube over the area. I try to avoid any creams, don't use soap.
CommentFrank and Cheryl, Thanks for the encouragement! I'm having a lot of difficulty dealing with this. Anyway, I'm hoping the specialist can help me with some relief. Best wishes to all on here. This is so difficult, but I'm grateful that this site is here. I'm feeling pretty alone with this. Robin
CommentTo Robin: Please don't deal with this by yourself. You have this site and the people here for support. I wish you good results with your upcomming appointment, but remember you can let those close to you know you are dealing with pain without getting too specific if that is a problem. Sometimes if those close to us know we are dealing with chronic pain they are a little more understanding, and you should also give yourself credit for handling such a difficult situation and doing your best. Good luck.
Commenthi- I am 26, I have had vulvodynia for 10 years. It hurts to have sex, not all the time, sometimes we just need to be quick, and often I can't do it 2 days in a row, I use KY non spermicide lubricant. For the last 3 months we have been trying to concieve. Is there any suggestions, maybe trying different things to lessen the pain, and to do it everyday around ovulation time, so I can concieve?
CommentTo Amber: KY lubricants contain,Water, Propylene Glycol, Sorbitol, Polysorbate 60, Hydroxyethyl Cellulose, Benzoic Acid, Methylparaben. Some women believe the propylene glycol can be an irritant. Have you tried or considered a silicone based lubricant? My wife and I are long passed our baby making days, having had three daughters. I remember seeing a tv program several years ago which looked inside the body during sex and it showed the cervix actually dipping into the semen during orgasm. I don't know if this would be of any help to aid in conception but I would imagine if it were possible to orgasm soon after ejaculation it might help?
CommentHello everyone, I do believe that I made a little entry some time last year, but I cannot seem to locate it. I suffered from this awful disease as well for almost a year. It started out to me as a regular yeast infection, so I thought. I went to doctor after doctor to try to get help. It was almost like a "mystery diagnosis" Everyone keep giving me cream cream and more cream. I went to Physical Therapist, Chiropractor, Neurologist, you name it I tried it. I was miserable, and can't figure out what was wrong with me. All types of test, even as far as an MRI. Everything kept coming back negative. I was being told your fine. I know I wasn't crazy and I know my rare end was in pain. A constant pain, some times better than others. I just prayed to God that he helped me for almost 11 months, I didn't get the proper help. FINALLY FINALLY, my mom suggested that I go see her OB/GYN!!! Thank God for GOOD mothers. Well, I did that, and I know what worked for me may not work for you but I m writing this to encourage you all and let you know, in time you will be free of that pain,and there is help out there. He immediately put me on Nortripyline once a day. Well, let me tell you immediately within a week or so I started to fell better. I wasn't too happen about taking an antidepressant and everyone had me scared about the side affects but thank God, I had none. PRAISE THE LORD FOR THAT... I have been pain free for over a year, but the thought of it still scares me. That was the worst time in my entire life. I want to encourage you. There are not enough victory and recovery stories on this site to give people hope. We need more women who have been cured of this to come forth and encourage those of you who are still fighting this disease. I pray my story reaches someone and gives them a little hope. YOU WILL BE PAIN FREE AGAIN!!!!!
CommentKim (and others), Thanks for sharing your success story. After reviewing all the entries, I noticed that many, many people stopped posting, and I am assuming (hoping) that many no longer suffer from vulvodynia and have moved on from that chaper of their life, and that gives me hope that one day I, too, will be pain free and can close this painful chapter of my life. I have had vulvodynia for 2 1/2 years that, too, started with a yeast infection. There were days my pain was so severe that I just wanted to die. I was lucky if I would have two "good" days a month. I, too, tried every therapeutic approach -- accupressure, chiropractic, naturopathic, etc. I have been to supposedly the best of the best gynecologists who specialize in vulvodynia, some of whom were a total waste of my time and money. I have literally spent thousands of dollars on my vagina, usually to no avail. I finally found a gynecologist who deals specifically with vulvovaginal pain and found what the numerous doctors missed. My pain is caused by yeast spores, so minimal in number, yet my body is highly sensitive/allergic to these spores. Most times, yeast is in the tissues and not on the surface, so cultures give negative results, and usually there are too few yeasts to show up on biopsies. This low-grade yeast infection is called chronic atrophic erythematous candidiasis. The yeast invades underlying tissues and penetrates inside epithelial cells and releases toxins that cause this chronic tissue irritation. Creams just sit on the surface and do nothing against the yeast. After months of mega dosages of oral antifungal medication, I am finally seeing light at the end of the tunnel. The goal of treatment is to minimize the number of yeast spores present until the body chemistry changes and decides to become "unallergic" to any yeast spores present. We all have yeast; my body just decided to become allergic to it. It is almost like an autoimmune disease. I tried decreasing the antifungal medication from 3 times a day to 2 times a day and started to flare, but once I bumped it back up to 3 times a day, I am feeling that life is good again. I also had tried several systemic antifungals until, finally, they found one that works for me. I just recently came across an article online written by Marjorie Crandall who describes this is in layman's terms and am looking into her advice to possibly be tested and treated for Candida allergy in addition to the systemic antifungal medication and will bring this up with my doctor at my next appointment in March. There are many different causes behind vulvodynia. To everyone reading this, do not give up hope to one day feel better again. Look behind every closed door, search under every rock -- what works for one person might not necessarily work for another, but keep on searching -- there IS light at the end of the tunnel.
CommentVulvoydynia was only part of the problem. Worse with yeast. When Dr. Glazer says work on your immune system, he ain't kidding. Try to compect 5 years into short story.I have had Vulvodynia now for about 5 years. First had irritable bowel, Then vaginal problems-tested negative for yeast by family doctor. But gyncologist said had a yeast rash. So treat for yeast, and of course did swab came back negative.So has my family doctor leaned over and said into my ear you don't have yeast, I went to see a natropath. Was some help. Over the last five years went from IBS, yeast burning white discharge etc. to inflamation of the bladder,(Cyctitis) to kidney stones. Continually go into doctor for cloudy smelly urine and of course test negative. So I have found doctors won't treat if they can't test. Candida is not black and white you have to find out what foods bother you and what do not. Natropaths have the right treatment for Candida but everyone responds different to treatment. Funny thing is doctors or more than happy to had out drugs for in my case, swab vaginal area and it hurts. Must be vulvodynia all other tests negative. The ones they can test for. Too sum up five years there is hope. I take 300 3x a day of Neuronitin(Gabapentin) and 100mg of elival a day. Neuronitin during the day and elival at bedtime. This not only helps with Vulvodynia but IBS as well. Through trial and error I am slowly getting rid of Candida.. It has taken antifungal supplements, probotics, and immune boosting supplements. For me I found one would help but I could never get rid of Candida. I need to do all three together. Antifungal and immune supplements during the day. Probotics at bedtime.. I tried taking them all in the day and it didn't work. As nuts as it sounds there is one test you can do yourself to see if you have Candida. When you get up in the morning before putting anything in your mouth get a glass fill it with water and spit in it. If your spit floats no yeast. If you have strings hanging down from your spit there is yeast. I can also physically feel it. My right side under my ribs felt like it was bulging went into doctors said yes it does feel enlarged. Go for altrasound guess what nothing looks unusual. Meanwhile I was taking all the supps except immune booster and swelling goes away. I could physically feel the difference test or not test. Since then I found I have to help my immune system as well to keep yeast in check plus stay away from scented cleaners. Scented anything for that matter.Now the only one thing I can tell you is when I started to treat for Candida. I felt tired, headaches, skin changes at first plus I don't know why unless it is to do with senitive nerves do to changes- when yeast die off my vagina would burn but then get better. So things did get worse but are now much better. Funny thing my thyroid was tested of course normal. Started taking kelp supplements and eating tuna vagina got better. Added in calcium citrate 1200mg a day (I am 46) and magnesium 300 a day - read about it in The Yeast Connection by WilliamG.Crook,M.D. and vagina got better. For me it seems if my system is out of wack my vagina will burn. I can`t think of anything I have missed. Oh yes I also added in Selenium (antioxidant) yes with brewers yeast. Which I have read many times that is a no no on the Candida diet. But I did read an artical (sorry I can`t find the paper at the moment) that said that the brewers yeast is a dead yeast and that the yeast that is left actually kills candida. For me it works. Between all the supps up to 40 acidophulus at one point. I am doing much better would hardly know I have vulodynia. Probably 90 percent of the time good compared to about 10 to 50 percent the last five years. Not only is the vulvodynia better no more cyctitis ( bladder problems) Vagina still feels well used but doesn`t burn after intercourse. No discomfort during intercourse. Yes I do have vulvodynia but there are many things that promote the discomfort of Vulvodynia for me Candida is only one Stress is an annoyance as well. Of all the places to have nerve pain. Listen to your body your M.D. can`t. I know there is nothing more frustrating when you feel not well and you know it because you live with it and you feel you can`t get the help you need because there is no medical test for it. Fortunately I found you can get the help you need some from the doctor and in my experience with vulvodynia from yourself. Research and do everything you can to get your body balanced including medications. (Which at first I didn`t like as I don`t drink or do drugs) but they seem, no they do help because I did try not taking them and I had trouble with IBS and vulvodynia. Hope this may help some of you out there.
CommentFor those of you who have had success with topical lidocaine for VVD, could you tell me what type of preparation you used (i.e., cream vs. gel vs. ointment)? I would like to try it, but I've heard some people have had problems with burning and irritation. I am just wondering whether there is one type of topical preparation that is better than others.... Thanks!
CommentHi Keely -- I used topical lidocaine nightly for almost a year -- I still use it now when I'm having "bad days". I use the straight lidocaine gel that is prescription. It is not compounded with anything. I did use it at first with some type of compound (not a med) and it was totally useless. In the beginning it burned for a few minutes -- but nothing horrible -- it was tolerable. I used to get ready to rest in the evening (in the beginning of this whole nightmare -- my behind was burning and sore by 6pm at night) I would put some on my vulva and vestibule (opening) of the vagina and sit with no undies on for about 1/2 hour or so then put my underwear on and rest on my side till bedtime. Then before bed I would reapply and then saturate a cotton ball and put it at the vestible at night. It took months -- I started in mid February and with every month I would feel better. I was still a nervous wreck and had to start some Elavil for about 4 months -- but I truly believe that the lidocaine really helped to "give the nerves a rest" I am doing much better after a year. You have to be very diligent and even use it during your period. I would have done anything by that time to make it better. You can have this compounded with elavil or pamelor and even gabapentin. They also compound it with estrogen -- but I do not advise this -- estrogen and breast cancer do not have a good mix and you don't want to be on it for any length of time. Check with your doctor and you need a prescription for any or all of these. Good luck -- I hope you have some relief.
CommentHi Cheryl! Thanks for your message, the information was very helpful. I just got a lidocaine prescription today, although my doctor wrote it for the ointment rather than the gel - I hope it works the same. I'm sorry to bother you with more questions, but could you tell me whether you used it during the daytime, too, or only at night? Thanks!
CommentHi Cheryl! Thanks for your message, the information was very helpful. I just got a lidocaine prescription today, although my doctor wrote it for the ointment rather than the gel - I hope it works the same. I'm sorry to bother you with more questions, but could you tell me whether you used it during the daytime, too, or only at night? Thanks!
CommentHi Keely -- after I answered I do use the ointment too -- 5% to be exact. Sorry. I mainly used it at night but my doc said that if I had something important and was uncomfortable to go ahead and use it -- although I didn't. The point of nighttime is to have a concentration in that area uninterupted. That is the whole point with using the cotton ball also. At first it would fall out but believe me you become a pro quickly -- put enough on there and it will stay. Some doctors recommend no underwear -- but mine said that since I always wore underwear to just continue. Have you changed soaps underwear and overall habits. If you haven't here are some suggestions. Cotton White underwear -- jockey brand last forever. All Free and Clear detergent -- double rinse and hang dry -- no dryer sheets for your underwear and pants that have close contact. No soap down there. Dove for sensitive skin for your body -- but none down there. Rinse with clear water down there at the end of your shower. When it was real bad I didn't even let the shampoo run down in the shower -- I would lean over in the tub and wash my hair - rinse - then shower normally. No perfumes, lotions or powders in the area. I never had to worry about a thing ever -- I was probably very careless for years. All of a sudden I had an allergic reaction which lead to a ball of trouble and whammo I was miserable. Took me 4 months to find the right doctor. When I did the world changed for me back to some normalcy. Also, no tampons for a while. I only use pads by "Natra" you can get them online or at Whole Foods and I still haven't tried tampons -- just feel too good to risk anything. Abstain from intercourse for a while till you get better. It never hurt but didn't want to start with that happening. So waited until it was right and never had a problem. Good luck keep in touch and let me know. I check in almost daily unless I am on vacation. I just want to help others. I'm an RN and very proactive about this topic. Good luck!!
CommentIm not sure it I have vulvodynia, but i have alot of the same problems. i have UTI's all the time sometime twice a month and as soon as i get a uti i get a yeast infection. i normally have to be on pain medication just 2 have sex. but if i have a uti or yeast infection sex is not happening. i have suffered for almost ten years and im only 24 years old. sometimes the pain is so bad i cant even function. i think i have spent half my adult years in a bath tub or a doctors office. if somebody can help please email thanks
CommentI'd like to respond to the last post regarding UTI's and yeast infections. If you had the time to go through many of the past guestbooks you would gather much of the information and suggestions I am about to mention. We know that by design the vagina, vulva have been refered to as being like a "self cleaning oven" by using discharge to remove unwanted bacteria and other matter. Unfortunately for some women the balance of ph is delicate and once is goes off both yeast and bacteria can flourish. The list of things that contribute to the problem is long but all must be considered and dealt with in order to effectively resolve the problem of reoccurance. Let's start with UTI's, most of the bacteria is e-coli and once it takes root in the bladder it is very difficult to completely erradicate. Antibiotics meant to kill the bacteria, also lead to yeast overgrowth. There are some things you can do to reduce the chance of a UTI or yeast infection. Most women understand the importance of wiping themselves from front to backng the bathroom and this helps prevent the transference of e-coli, but during sex there is often the opportunity for this bacteria to be brought from the rectal area to the vulva and vagina simply by the positions used during sex. I am in no way referring to anal sex, but the unintended proximity of the rectum to the vulva/vagina and the movement of the penis in that area. I am not saying this to sound gross or inappropriate but rather to point out a possible source of infection. Then there is the problem of semen diluting and upsetting the ph of the vagina, especially if sex is frequent or the balance is delicate to begin with. The use of condoms would either resolve or disprove this as a possible source of trouble. Not drinking enough fluids, avoiding urination are also not good ideas if you are having problems with UTI's . Boric acid suppositories are very helpful with restoring acidity to the vagina, but they are only part of an approach to staying healthy and infection free. A regimine of healthy eating , exercise and proper rest contribute to a strong immune system, together with supplements including D-Mannose which acts in the same way as cranberry juice or extract to make the bladder slippery so that the bacteria (e-coli) cannot take root. There have been more causes and treatments but I just wanted to touch on a few. I hope no one was upset with my opinions, but many are based on my personal experience with my wife and by sharring these suggestions I hope someone will be saved time, money and pain.
CommentHi all. It has been several months now and I am still dealing with my flair up. Everything I try seems promising for a little while then it's almost like a rebound effect. It comes back worse than it was. I recently tried the Estrace cream and had some improvement in the look of the tissue but it burned so bad I couldn't sleep. After several weeks I gave up. I am a little afraid of the antidepressants because I have had some bad experiences with them in the past. I am curious now about the lidocaine. Some people say they use it just for numbing prior to sex and others say they use it more often. Some days I would be sooo grateful to just be able to fall asleep without this awful burning pain. I am worried about further skin damage since I think I developed some damage from the overuse of fungal and bacterial treatments when this first started. Has anyone else found this treatment to be more damaging? Also does there seem to be any rebound effect when you withdraw from it? Thanks.
CommentI saw the specialist today who recommended gabapentin cream-6 percent solution and diflucan once a week. Anyone had any experience with these meds? Also, does anyone have any tips for dating with this condition. Hang in there everyone! :) Robin
CommentTO CHERYL, THANK YOU FOR YOUR INFORMATION. I HAVE LICHEN SCELORIS AND WENT FROM DOCTOR TO DOCTOR. I WAS GIVEN TESTOSTERONE COMPOUND THAT GAVE ME MALE SIDE EFFECTS. I FINALLY WENT TO A DERMOTOLIGIST WHO PUT ME ON CLOBETOSOL AND ANOTHER LOWER CORTISONE. HE ALSO PUT ME ON TEMPORARY DISABILITY BECAUSE MY WORK WAS A LARGE FACTOR. I READ YOU E MAILS AND SAW YOU ALSO USE LIDOCAINE AND HE SAID THAT WAS OK FOR ME TO USE. I AM 62 YEARS OLD AND HE IS THE ONLY DOCTOR THAT EXPLAINED THIS TO ME. "HE SAID THAT OUR BODY IS HELD TOGETHER WITH A GLUE (IF YOU WILL) AND THERE ARE TWO TYPES OF GLUE. THE SOFT ONE LIKE A POST IT NOTE AND THE OLD FASHIONED YELLO HARD GLUE. MY BODY CHANGED FROM HORMONE LOSS,PROBABLY, AND NOW MY BODY MAKES THE HARD GLUE WHICH CAUSE THE INFLAMATION AND THE THICKNESS THAT MAKES THE SKIN BURN. SINCE I HAVE BEEN USING THE CORTISONE THE SKIN HAS SOFTEN. HE ALSO EXPLAINED THAT WE HAVE TO BE SURE NOT TO GET THE SKIN TOO.THIN. I HAVE SEEN ABOUT 80% INPROVEMENT AND I HAVE USED THE LIDOCAINE ONLY ONCE. I DONT WANT TO USE IT UNLESS I HAVE TO. I WAS HOPING FOR YOUR OPINION ON MY DOCTORS EXPLAINATION. AMZY
CommentHi Amyz - as my doctor told me the lidocaine must be used nightly and consistently for months to work. If you have Lichen Sclerosis they may treat this differently -- but the use of Lidocaine must be consistent for it to work. As long as you do not have any prolonged burning it can't hurt. Initially when I first applied it would burn for a few seconds but my doctor said that was ok but not for a long time. Give it a try nightly. Put some at the entrance of the vagina and then saturate a cotton ball and put it at the entrance over night. I am finally free of any treatments and feel great most days. Get a little sore around my period because of wearing pads but other than that I am on most days 95-100 percent better. Goood luck.
Comment
CommentHi Cheryl, Thank you for the information. I am not sure, but I thought you also had Lichen Scelrosis. I use the steroid cream and I guess you do not. Is that correct? I have most of the problem now around my butt when I sit for too long. What did you think of my Doc's explaination. I will use the lidocaine everynight. Please get back to me. Thanks so much AMZY
CommentTo Cheryl again. I am sorry I forgot to ask you about prolonged burning. Do you mean as long as the lidocaine does not burn for a long period of time? AMZY
CommentHi Amyz -- no I do not have lichen sclerosis -- look back at the guest books it might have been someone else. In regards to the Lidocaine -- prolonged burning after you put the Lidocaine on. Also -- I had a lot of pain in the rectum too and my doc said to put the Lidocaine on there too -- can't hurt. She explained that it gave the nerves a rest and hopefully will calm things down over a period of time. Hope this helps. Any questions just write her and I'll answer. Good Luck
CommentTo Cheryl, Thank you again. I have applied the lidocaine on cotton ball and also on the rectum. I am very grateful for your responses. I will let you know how things go. Amzy
CommentTo Cheryl, Hello again. I am not really good with the computer so my husband showed me how to go back into the quest book. I see all your postings and at some point in the past we did communicate. Please continue to give your support. I do agree that this type of pain is nerve related and so does my derm. I use a low dose of xanax when my nerves get too bad. I have been helped with the cortisone treatments and see my derm.on a regular basis. I worry about vulva cancer but he said I am not in that position. Thanks again and please keep posting. AMZY
CommentHi Amyz -- I too used Xanax on occasion to help calm me down. It can be addictive so be very careful. I was put on low dose Elavil for about 4 months which really helped a lot. It helped with the pain and did loads for my mood. I was depressed. I wasn't a zombie but I was not myself. Everyone has their own combination of things that worked. I started with the Lidocaine and got some relief and then added the Elavil first 10mg and then increased by 10mg every couple of weeks. At 40mg I was feeling pretty good. I stayed on it through the summer and quit early September and had no rebound. I continued to use the Lidocaine faithfully until about 1 month ago and stopped and I am feeling great. I always worry that it will rear its ugly head but hoping that doesn't happen. Even got on my recumbent bike with no repercussions. I won't ride a regular upright bike. My doctor said it was not a good idea. Good luck and keep me posted.
CommentTo Cheryl, Thank you again so much for the response. I used the Lidocaine today mostly on my butt with a sort of panty liner. I got thru the whole day with little discomfort. I also used it in the front to be safe. I will use it again tonight and then alternate with the cortisone to keep my tissue thin. I know you are an R N and I work in my local hospital. I am in finance. No one has ever heard of this type of problem. Only the E R doctor who helped get me on the right path. I believe that L S falls under the category of Vulvadynia--am I correct. Looking forward to your response. Amzy
CommentHi Amyz- You can find info about Lichen Sclerosis -- its been around and noted by MDs. I have a friend with it and she deals with it best as she can. Her mother also had it and lived in a lot of pain for a lot of years until more recent times. Vulvodynia is a umbrella category for any type of pain in the vulva or surrounding tissue. Any number of things can cause the vulvodynia and the treatments vary. My sister in law had a lot of problems due to yeast from being a diabetic -- she suffered about a year and was a good source of comfort for me -- although she was very adament about not dwelling on it but she did not have the pain while sitting like I did and that truly made it very difficult to ignore. I'm glad you got some relief from the lidocaine. Using it at night is even more beneficial because you are not going to the bathroom or moving around as much -- it goes more undisturbed. I rarely used it during the day just because I felt it was too messy. I would put some on all over in the evening and lay on my side while watching TV and then reapply before bed with the cotton ball -- so I had a good 11-12 hours of it just sitting there. I think that was the key. Unfortunately it didn't allow me to do a whole lot but by this point I would do anything to make myself better. Once I started to notice a difference and get back to my normal routine I just did it at night. I know this is difficult -- I had a rough time during all this -- I am a vibrant active woman in my 40's -- I work part time have a loving husband and a beautiful child -- this problem practically crippled me so I hope my info helps. Also -- where do you live -- a lot of people have posted different doctors in different areas of the world who are very well versed on this condition. I am in Chicago -- I luckily went to a urogynecologist who then sent me to a Gynecologist who specialized in Pelvic and Vulvar pain. She did wonders for me -- physically and emotionally -- we laugh now that I should be on a poster with jeans on smiling. Good luck -- keep me posted. Glad I could help -- its my mission to help someone not feel as bad and alone as I did.
CommentHi Cheryl, I am so glad to be able to contact you. I live in New Jersey. I am 62 years old. I first was diagnosed with Atrophic Vaginitis by my OBG and she gave me Premarin creme. The Premarin made me spot I still have my ovaries. Because of the bleeding I had to get a biopsy of the Lining and a ultra sound to be on the safe side. The results were negative "Thank GOD". I was in such pain from this I didnt know what to due. This was last February. The E R doctor in the hopital where I work, gave me low dose of testosterone which helped a little. But I was still very much in pain just when I walked let alone at work. I asked my family Dr. to suggest a new OBG and she did. That OBG diag. me with L S and doubled the testosterone which gave me scary side effects. I reaserched the web and found that Clobetosol was the mainstream medication. In the meantime I spoke to my Derm. and because I knew him for years I just wanted to talk to him without and exam because I was embarrased. He did talk with me and said without an exam I cant be sure but it does sound like L S. I eventually let him exam me and he confirmed his diag. He is well versed in this because everything I researched he knew about. He also warned that we have to careful in the use of the clobetosol for thinning. He also to me to use Cetaphil Moisturizer in between. That also helps. He said the Lidocaine is also fine to use. I had some bleeding one day and he took me right in and assured me it was from the tissue disease. I am not working right now and the bleeding is a lot less. He said that this can just go away in some people and if it doesnt, I can controll it. I really get scared sometimes when I am by myself. I have a great husband also. We have been married for 41 years. I have not been itimate for at least 3years. Maybe with the Lidocaine I can resume an intimate relationship with him. If there is anyway we could communicate by e mail other than the site please let me know. I am so greatful for your help. I hope that others will be helped by our communication. AMZY
CommentHi Amzy -- sounds like you are in the right place. This site has given me a lot of insight and direction on which way to go and if not for anything else -- just a feeling that you are not alone. I hope your treatment plan helps and keep me posted. I check in most days just to see if there is anything new. Good luck and post anytime.
CommentTo Cheryl, Thanks again for your response. I will use the Lidocaine again tonight. I also read back to your previous e mails and I got Jockey Underwear today. I also read where you stated that your sister in law is able to put her situation in the back of her mind but you couldn't because of the constant reminder everytime you sit. That is exactly how I feel. People just cant't understand the pain and how you really cant escape it. I also sit on my side (left) at night because a lot of the pain seems to be on my right side. Again, thank you so much for responding to me, you have been a wonderful oasis just for the understanding alone of what I am feeling. I pray the lidocaine works for me again. Please stay in touch your information is very calming to me. AMZY
CommentHello, If you are reading this, either you or someone you know is in lots of pain. I was diagnosed with vulvar vastibulitis in Feb 2008. I was directed to Esperanza McKay in Houston, Texas. She is a wonderful woman and happens to be a student of Dr. Howard Glazer. Since I moved to the east coast, I've been able to visit Dr. Glazer myself. Both Ms. McKay and Dr. Glazer have placed me on an "exercise" treatment to gain control of my vulvar muscles. This treatment was simple and non-surgical. Within two months the abnormal swelling and "spontaneous" pain subsided. I can now wear jeans, sit for long periods of time, and have control of my bladder. I also learned about the psychological affects of vulvar vastibulitis with Dr Glazer and I am currently working on my sexual relationship with my partner. I can't tell you how much my confidence has increased since gaining control of this situation. I also enjoy knowing that I did this without costly and invasive surgury that may or may not work. I had tried anti-inflamatory creams and bacterial gels previously, but with no real results. If you are serious about combating this "injury" for the long term, please contact Dr Glazer for his assessment. Surgery is permanent!! Leave it as a very last resort. I tried to keep this short, but of course there is always more to the story. If you would like to contact me, please do! I am more than willing to share more of my experience. Please contact Dr Glazer for my email - he will know who Victoria from Washington DC is. I wish you luck! VM
CommentDr. Oz Interviews Dr. Howard Glazer, NVA Board Member, about Vulvodynia on XM Radio Tune into XM satellite radio channel 156, Oprah & Friends, on Tuesday, March 3rd, when Dr. Mehmet Oz, aka America’s Doctor, will interview Dr. Howard Glazer, clinical associate professor of obstetrics, gynecology and psychology at Cornell University, about vulvodynia. The show repeats throughout the day at 3am, 7am, 12pm, 6pm and 10pm EST. Dr. Glazer’s New York City practice focuses on the use of surface electromyographic feedback (sEMG or “biofeedback”) in treating pelvic and urogenital pain syndromes, such as vulvodynia. During the hour-long show, the doctors discuss “everything vulvodynia,” including the importance of assessing a woman’s pelvic floor muscles and treating any dysfunction that may be present. XM radio subscribers can tune into Channel 156 from their satellite radios. If you don't have an XM subscription, you can quickly sign up for a free trial and listen to the show online: http://xmro.xmradio.com/xstream/index.jsp
CommentTo Cheryl, Hi Cheryl I just wanted to let you know I have been using the lidocaine ever since my first e mail to you. I use it at night and during the day because I want to stay away from cortisone for a while. I must admit, I want to feel instantly better because my nerves are getting the best of me. I have felt some relief, and I know that I have been using it for only a few days now. I am at the point, however, that the first little discomfort I feel I get crazy. I do use .25 zanax once in a while. AMZY
CommentHi Amyz -- its going to take a while -- you need to be consistent -- The Lidocaine will not harm you so just keep using -- after about a month I noticed a 25% decrease in pain and then just kept getting better over time -- I used it from last February til this past January every night!!! Finally stopped and I am just fine. So hang in there -- even some relief should give you some confidence but I know the feeling of "OH MY GOD ITS COMING BACK" when you start to have better days this will happen less. I can go a couple days without not thinking about it which I thought would never happen. Hang in there.
CommentTo CHERYL, Hi again your imput has been a great comfort to me. I dont feel so hopeless. I hate to have another question but if you could answer this for me it would be great. I am using the lidocaine at night and even during the day. I know you said to give it time. What I dont understand is "I think of Lidocaine as a creme that just numbs the area so how will it work as far as not having the pain anymore when I sit. I hope to hear from you soon!!!! AMZY
CommentTO KEELY, I would like to know how the Lidocaine is helping you. And what are your symptoms and Diag. Thanks LUCY
CommentHi everyone, I have been reading this site for about 2 weeks. I suffer from vulvodynia also. I have sever burning when I sit for long periods of time and sometimes just walking is difficult. My Dr. said I have white patches along the vaginal lip. She gave me premarin cream which I am not happy about using. I have seen postings about Lidocaine. Can someone explain how that works so I can speak to my Dr.? Thank you, Dottie
CommentHi Amyz and anyone who has questions about Lidocaine -- as my doctor put it -- by consistently using the lidocaine and leaving in applied for long periods of time undisturbed -- that is why nighttime is optimal -- it gives the nerves down there a rest. Now if you have some underlying cause of the pain like lichen sclerosis or chronic yeast or several others -- you must also treat the problem -- maybe by treating the problem you will decrease the pain. In my case -- I had an allergic reaction and the nerves were on "high alert" after the reaction and the problem were gone. By using the Lidocaine it helped to give the nerves a rest and to reset this nerve pathway. The less it is sent the signal for pain this leads to a decrease in pain. In all my research that I had done I have read about the lidocaine with the cotton ball and its success. In my case I have no underlying disease in the vulva and it worked. i hope all of you have success and relief. Good luck.
CommentTo CHERYL, again I thank you for the information. I am going to continue to use the Lidocaine at night. As I stated previously, I use it also during the day. I do ha ve lichens also so when I feel I should I will use the cortisone. I hope the Lidocaine will help me also and maybe I can go a few days without thinking about down there like you do. AMZY
CommentTo CHERYL, Hi Cheryl, I just wanted to let you know I went thru another day with just the Lidocaine. I realized my script is for 3% and not 5%. I get a little burn if I sit too long and I just reapply the Lidocaine. I hope to be able to continue to use it and stay away from the cortisone for awhile longer and maybe, I will get lucky and go a few days without any problem. AMZY
CommentHello everyone, It is my pleasure and also my sorrow to meet all of my fellow sufferers. That being said , i would love to know if anyone shares my unique problem. I tend to chronically grow out unusual germs such as Group b step, e coli Klebsiella and even some thing called pseudomonas which is known to cause a uti. Picked up i think on very Sick skin . Many docs say normal flora to all germs , however i do not believe this. Wemon who have vulvar disease ARE NOT NORMAL, they are immune comprimised. Does anyone have anything like this? BEEN on way too many antibiotics , and now i am only left with burning , stinging swelling and chronic pain . Plus the kicker is I still have the overgrowth of the bugs on culture. Has anyone found a way of treating this kind of vaginitis. it is not BV. Anyone tried Betadine douches or HYdrogen peroxide? Been to many vulvar specialits , Benson Horowitz MD. DID believe an overgrowth of gbs. caused a cremy white or yellow tinged discharge. and WAS an infection. MY flora is all these germs. Would be so grateful for any thoughts or if they have found a Doc that does not think Strep , E coli and KLebsiella OVergrown are part of a womens NORMAL flora. LOVE TO ALL< and take even a tiny piece of comfort in knowing i get what your all going thru.
Commenthi ive had vuvlodynia for 18 months, since i gave birth to my daughter in 2007. the gynocologyst has been looking into my pain, and thinks it has been caused by tearing giving birth and then the hospital sewing me up ( 2 attempts) he thinks it is pudenal nerve entrapment. i feel like i need someone to blame and have considered sueing the hospital, as i cannot sit/stand for long, wear trousers/jeans /tampons etc.im in constant pain, and just about to start lignocaine injections after taking amytriptyline for the past 12 months.has anybody else had this or sued? would like to hear your views please rach x
CommentTo Rachel: I was present when my wife gave birth to our three daughters and each doctor seemed to perform the episiotomy and repair differently. My overall opinion is that there is a rush to make the incision and very little care taken to reattach anything damage during the procedure such as reattaching muscles and I'm sure nerves as well. My wife has suffered from a thinning of the skin and a reoccurent tear at the six o'clock position which may or may not have something to do with all the deliveries? Eight years after the birth of our last child and in an attempt to form a new scar in the area of the episiotomy, her Gyn performed a more thorough repair. I don't know wheter or not he actually reattached any muscles but the procedure did not resolve the problem. I would suggest you get another opinion and consider a more thorough procedure to repair anything damaged during the delivery. Best of luck.
CommentHi to cheryl. I appreciate the response to my posting. I have called my Dr. for a script fot Lidocaine. It will be ready for me to pickup today. I will continue with the premarin for now but I will use to lidocaine as well. I pray for some luck because I cant stand the burning and thinking about it all the time. Dottie
CommentI havn't visited this site for a couple of years, and it breaks my heart to see there are still many people who are hurting. After a year and a half of suffering with the usual "V" symptoms I started on Elavil. I worked my way up to a dosage where I felt complete pain releif and stayed on this doage for 6 months. I then slowly weaned off the medication. I have remained completely pain-free. Maybe this will help at least one person.
CommentTo Been there done that, I have read a lot of people who suffer with V pain use Elavail but I am only 5 feet tall and I know there will be weight gain on top of my over weight now and I will get really depressed. Dottie  |
Home | Products & Services | Research & Articles | Connect with others | Dr Glazer | Professional Area |
