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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
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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!
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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 .
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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.
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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 experienc |
