CommentWelcome to the 30th Vulvodynia.com Guestbook.
CommentHi everybody. I was diagnozed with vulvodynia and IC about 6 years ago. Burning and stinging and pinful intercorse. Was put on Elavil and went up to 100 mg a day. I was on it for a few months maybe a year. The vulvodynia went away, mild pain upon getting the urge to urinate was stil present. But I felt like I had my life back. The vulvodynia symptoms showed up after a few back to back infections. I haven't had pain since 2005. Now two months ago symptoms came back. I was treat for yeast and bacterial vaginosis. Symptoms cleared up, thencame back and cleared up again. This happened a few times. I went to the gym alot and rode a bike. Last time it came back, it just stayed. But unlike last time the burning stinging is in the clitoris only and it feels like the pubic hair above the clitoris is getting pilled on. Has anybody had symptoms in the clitoris and the area above the clitoris? The pain is significantly less than last time, but I feel like I will have to go back on Elivil cause they worked wonders on me. However, I am afraid to take it because of the side effects I had whenI was on it. Can anybody tell me about their experience with Elivil please? Also has anybody found a refeif from nerve block? And has anybody been to see DR. Hamond and John Hopkins in Lutherville, MD and any experience good or bad with him? Thank you so much. I am very deressed and emotional and feel hopeless. I am not sure why I feel like this, when I have been treated before but still I feel like my life is over. As I said pain is in the clitoris, burning feeling and a feeling of sand being trapped under the hood and also burning tingeling sensetion in the pubic hair right where the labia majora comes together. Please give me some hope. Thank you
CommentRegarding Botox- I tried it a few weeks ago in hopes of relieving tight muscles that were causing pain mostly in the rectal area. I thought it would be a final treatment on the road to recovery from this horrible condition. I suffered greatly for years with vulvodynia, but slowly got better. Well now after the botox, I feel I have set myself back greatly. Most of my symptoms have returned. I am in lots of pain and very upset with myself for deciding to go ahead with the botox injections. I guess I just got too greedy in hoping for recovery. To all my fellow sufferers, I am praying for miraclulous recoveries for us all. No one should have to live like this. God Bless.
CommentTo private: I haven't tried botox but talked about with my gynvabout it and he said it takes 4-6 week to see full effects of it. So there is still hope!
CommentDEAR PRIVATE, I am kind of new at this. I am sorry you had this relapse. You said you suffered for years and then slowly got better. What did you do to slowly get better? Could you share that with me? This is the first time I have written here,I have pincing and burning in both areas.
CommentDoes anybody here have burning/stinging and sharp pain in the clitoris and also burning feeling and pain when urinating?
CommentTo Vesna, I have suffered from Vulvodynia for going on 20 yrs. I have been prescribed a lot of different antidepressants and after reading the side effects was afraid to take them. Its as if the cure is worse than the disease. I read the posts from other sufferers like us and the antidepressants don't seem to help a lot. I have been taking 100 mg of Elavil at bedtime for 6 yrs. I really don't know what it does for the pain but it helps me to sleep. What has helped me the most over the years is xanax. I started with the lowest dose when the vulva burning first started. It was a life saver. The trouble with xanax is over time you have to keep increasing the dose. I am up to 1 mg 3 x day now and my system is calling for more. I mostly try to stay on the dose my doctor has prescribed for me. I am retired now and my goal is to wean myself off of it. Its very hard to get off of it but I also have to face the fact that its long term use is causing me to lose my balance and have taken a few falls. Every medication, no matter how good they are, have long term side effects but I will stay on the Elavil for now. I have gained a few pounds but the vulvodynia causes such pain and burning I can't even take a walk. I used to love to go to the gym but now it hurts to do anything. I have done the pelvic floor therapy which only hurt me some more. You asked about nerve blocks. My PT didn't think I had a problem with my muscles down there and suggested I try a nerve block. I went to the pain clinic and the dr. there suggested a Superior Hypogastric block. That did nothing. He asked me to come back in two weeks and he would try a Stellate Ganglion block which targets a different set of nerves. Again nothing happened. $6,000 later I still have the pain and burning as bad as ever. My problem is all in front, the vulva and under the pubic hair area. Those nerve blocks might work for someone else. I was very disappointed when I read the post right after yours. I was waiting to hear from someone who tried the botox injection. I am sadened that it didn't work for her. I was hoping to hear some good news about that as my gyn. had mentioned that as an option. I really don't know where to go from here. I pray every night that someone will find something to give us some relief from the pain. Hope you and all the rest of us will find the answer soon. God Bless!
CommentMaybe the botox injections triggered the pain receptors, I don't know. The botox is working to ease the muscle tension, but it is being overshadowed by the burning and discomfort. I was able to slowly get better by my body healing itself. I try to eat right, take omega pills, exercise, and stay away from triggers (tight jeans, sitting too long) I believe the body has an innate ability to heal itself... just need to help it along. It is very hard to constantly be in pain. I do yoga to get my mind off the pain and just try to deal. It is hard, but I have to keep earning a living and keep an appearance of health. This is an expensive illness, but I hope doctors and researchers can find a cure or even a reason why we are affected. I wonder if environmental, antibiotics, stress levels, a virus, or genetics are responsible. Also, I wonder if living in less humid climates help with the pain. Deciding to try botox is an individual decision. I only posted my experience, because I wouldn't do it again and going into it all I heard was positive.
CommentI got back from Baltimore last night. I went to see Dr.Hamod at the dvp center (dvpcenter.com) and John Hopkins. I was diagnosed with IC and peripheral nerve sensitization or neuralgia due to irritation of the genitofemoral and the ilioinguinal nerves which supply sensations to the labia and urethra and clitoris. The test he did for dyspareunia or painful intercorse was negative since I felt no pain as he inserted a finger and pushed around, so no pain with sex. He said there are two different ways that this is treated, with medicine or nerve blocks of the irritated nerves. He opted for trying the oral treatment first for 6 weeks. I am to take 20mg of Elavil (since I had a huge success with it before although I don't know if this was a mind over matter and my body just healed itself), but anyways he put me on 20mg of Elavil, I am to increase the dose to 30 in 5-6 days and to 40 in 5-6 days after that. I am not to take a dose higher than 40mg without checking with him first. Also, he gave me a cream that I had to go to a special pharmacy in Baltimore to get it filled in, it was 30 dollars and it contains 6% Neurontin. I need to apply it to the vulva, cltoris and urethra three times a day. Also he gave me la ist of foods he wants me to avoid for the IC and told me to take two Citracal tablets a day with the largest meal. I was very relieved to find somebody who knew exctly what I have. I have a peripheral neuralgia because he examined the pelvis and there was no pain in the pelvis so I am thinking there is noting entrapped in there and it's purely on the outside. So PT would not do any good for me. As I told you before my symptoms are burning and stinging in the clitoris and above the clitoris and the most annoying of them all is tingling/prickly feeling in the mons pubis above the clitoris where the the labia majora come together. If the oral treatment doesn't help I will go in for a nerve block on July 20th since he wants to give the pills some time to work. This relaps was brough on by too much friction of that area. I have a pair of very tight jeans that I have been wearing to work at least twice a week for the past 5 months, also excercising alot, running 6 miles 3-4 times a week and also bike riding (a huge mistake on my part). I will keep you posted on my progress. As I said Elavil did wonders for me before. Before the pain was everywhere, it basically hurt 24/7 in the vulva and vagina and everywhere else. So I am glad (as glad as you can be to be hurting) that now it is only localized, it was not due to sex or infections or any entrapped nerves but it is solely on the surface. The pain started about two weeks ago. I have cried ever day for the past two weeks. I have lost 3 pounds, I haven't smiled or talked to co-workers (unless it's about business) in two weeks. And this comes from the girl that was voted The Funnies and The Second Most Outgoing person last year (a girl in the office makes this polls and people in the department vote , it's cute:)). So it is definitely impacting my life tremendously. Please ask any questions you might have, either here on through email.
CommentWanted to update everyone on me in regards to BOTOX. The insurance approved the botox,. I had botox and prudundal nerve block done on Wednesday June 9th. Everything went great I was out for the proceduce he put the botox in my vestibular glands ( I have alot of pain in my right vestibular gland), vulva and pelvic floor. They put the botoc basicly where ever you have pain. I am sore casue I have like 50 injections in my Vagina but thats to be expected! But I am not in any more pain then I was . My doctor says the the botox injections will take 4 to 6 week to work. So I will update you then...
CommentTo Laura - Thank you for posting about your Botox injections. I pray that this will turn out to be the cure you have been waiting for. I am really interested in having it done also. I will wait a few weeks to see how you are progressing. The idea of getting 50 injections in the vagina gives me goose bumps. I couldn't even comfort my kids when they got shots. Did you really get 50 injections or do you just feel like you got that many? Also will the botox injections have to be repeated every so often? Is it anything like cosmetic surgery that has to be repeated after a certain period. I would be willing to do anything for a few pain free months. Sorry for all the questions as I understand you don't know all the answers yet. My prayers will be with you during the next few weeks. God Bless!
CommentMonica- Thanks for the questions! I am glad to answer any you have! Do to the fact that botox is in expermential stages for vulvodynia and vestibulitis nothing is black and white. Everyone reacts differently to botox. Yes I did get 50 injection in my vagaina mostly in vestibuliar gland, that is where most of my pain localized. I also got them in my pelvic floor muscles and vulva. I know this must sound painful! But they use tiny needles with botox and I was out thank god! I was a little sore for a few days after but I was NOT in any more pain then usual. I noticed when I walked the kids around block it hurt a little more but that was only for the first few days. My doc said if this treatment works for me then we may have to repeat maybe ever 3-4 month. But he says studies have shown that botox seems to last longer in the vagaina they are not sure why. I will keep you posted on the botox I see the doctor in 4 weeks we should know more them. He will probably do the cu-tip test again and see if its still painful around the vagainal opening I have a lot of pain with pressure and after sex, wearing tight jeans, and of course sitting. Let me know if you have any more questions?
CommentI was wondering if anyone ever used any type of hormone creme for the vaginal or vulva burning??? I have bee doing some internet research as I am new to this and found that some women use different hormone cremes???
CommentJosie, a lot of women use an estrogen cream, either Estrace cream or a compounded one. Some also use Testosterone cream.
CommentTo the person who just answered my question about hormone creme....Thank You..I am just a little concerned about breakthrough bleeding since I still have my ovaries. I have not had much luck with OBGs and my family Dr. perscribed one for me until I find a good OBG but as far as if I get any breakthru bleeding while on it...she really could not be specific.
CommentJosie- I would get your hormornes tested before i tried any estroil or testostrone cream. It usually works well for post-menapausel woman. I treid the estroil cream 2% and I am 30 and I had a lot side effects hair loss, dizzness, and feeling out of it. My hormone levels were normal so I think I was having a estrogen over dose. Only used it for two weeks and then stop due to side effects. Good luck!
CommentJosie, I still have my ovaries too, and have never had breakthrough bleeding from the Estrace cream. You could try it for awhile and see if it helps you.
CommentTO THE PERSON WHO POSTED WITHOUT A NAME..THANKS I am post menauposal so I will try it. You stated us use it and never had a problem.. couldyou tell me how much and how often u used it in the begining of the problem and how much u use for maintance?? Laura thank you for your help also, but I am well over 30unfortuantely.
CommentJosie, I've always applied a pea sized amount of Estrace cream twice daily. I'm also post menopausal. Hope it helps you.
CommentHI again, I don't know how to address you so I will call you MY FRIEND. Thanks for your response on the Estrace. I have been using it inside for 4 days 1grm at nite and 1 in the morning. Previously to that I was only using it 2x a week and I felt I needed to use more. I am having a difficult time with OBGs and I am in between Drs. I also had my hormone levels tested sometime ago and they were all LOW of course. I only intended to use it internally for a week and then just a pea size every nnite. Do you have burning or pain or itching. Mine is burning when I sit for a long time mostly.
CommentHi everyone. My name is sheila and I have had vulvodynia for 1 year now. I have pudendal nerve pain (the pelvic nerve) i can feel alot of inflammation in the vaginal area but mostly I cant sit down without my whole butt going completly numb and its painfull. This affects me everywhere I go..im only comfortable on my belly on the floor. I guess the vulva pain has hurt my nerves. I hope I will hear from someone who knows something about this or someone who has this.Im taking lyrica and desipramine..thanks..sheila..please email me be2she@bellsouth.net
CommentJosie, sitting too long causes soreness and/or burning and intercourse is out of the question. It causes excruciating pain. As long as I don't attempt it or sit too long, I do OK. My hormone levels are low too. I've never inserted Estrace cream though.
CommentTO MY FRIEND:: intercourse is out of the question for me also. I was using estrace creme only 2x a week for the past year and it has helped. But I ran into an old friend of mine from school and she said she had the same thing and used the creme inside and now only once a week and she is rarely bothered by the burning. Is the Estrace the only thing you use for your burning?????
CommentYes, Estrace cream is the only thing I use. It would be great if inserting it once a week would get rid of the burning.
CommentTO MY FRIEND::: I am going to try inserting it for 2 weeks now once a week,,It helped my friend and the the lttle insert saids to do it that way also. I also have some kinda of pain on my butt now also. I dont know what that is about. This is sick...really getting upset
CommentHi Everyone, I have been suffering from Vestibulitis and Vulvodynia for 2 years now. I have seen 5 doctors and they have treated me with most conventional treatments but nothing has helped. It is like the more that I pay attention to the condition, the worse it gets! The pain initially started when I used over the counter yeast creams and the antibiotics to clear what I thought was vaginitis. Neither worked and I have had burning between my urethra and clitoris, discomfort in the pubic hair area and pain at the base of my vaginal opening since then. A couple of months later, I had a terrible tailbone injury which further tightened my pelvic muscles. The symptoms accelerated slowly as I switched birth control pills for low sex drive (thinking this was causing the pain during sex) then a year after my initial incident, I was formally diagnosed with Vestibulitis and given a cocktail of Elavil, Citrical, Diflucan and Estrace. The pain just got worse and I began experiencing horrible urinary symptoms. Now I can't pee without burning (despite physical therapy) and a single unhealing fissure developed in the skin between by urethra and clitoris which has been bothering me for atleast the past year. STD, Herpes cultures are negative, HPV is negative and the biopsies I have had just come back "inflammation. Steriod creams just make it worse. Is it possible that this is a skin-imbedded yeast infection? Some doctors think this is mythical but I am wondering if anyone has experienced similar symptoms and tried an anti-candida diet or other natural remedies? Or any other treatments that have worked? Please help me!
CommentHello its me Sheila,again. I have been readinf so much on here the last few days and I cant find many people with the burning on the butt cheek pain. I have read that vulvodynia can lead to pudendal nerve pain. I have vaginal burning and a feeling of pressure or swelling in the vagina when Im on my feet to long. I have to sit to get off my feel but then my butt cheeks are on fire..it feels like sitting on hot coals or like Ive been on a 20 hr road trip without getting up. Im taking 450 mg of lyrica and just upped my dose to 50mg of desiprimine(only on it for 2 weeks) I couldnt stand elavil..I gained 20 pounds in 4 months and stayed sleep alllll the time and most of all I couldnt remember things or concentrate. I hope I never have to take that again. Anyway, I cant believe how many different symptoms of vulvodynia there are. Im glad this site is here..it makes me feel like I am not alone in this daily battle...Does anyone live near shreveport bossier Louisiana?? I will be checking back in from time to time. I pray that one day they will find a cure for us.. Love to you all..Sheila
CommentTO MY FRIEND::Hi, I was hoping hear back from you. Have you tried inserting the hormone creme into the V. ??? I have been for 5 days and I have not had any spotting Thank GOD I am going to continue for another week if there is no spotting and maybe I will get better results with the V burning. Is the Estrace the only thing you use for V burning???
CommentWHY THE HECK TO THE WOMEN ON THIS SITE STOP POSTING, DISAPPEAR, GONE. THIS IS A SITE FOR WOMEN HELPING OTHER WOMEN......ISNT'T IT
CommentWHY THE HECK TO THE WOMEN ON THIS SITE STOP POSTING, DISAPPEAR, GONE. THIS IS A SITE FOR WOMEN HELPING OTHER WOMEN......ISNT'T IT
CommentSome of us stop posting from time to time because we're crying our eyes out from pain and despair and can't see the computer screen through our torrent of tears. Others are vomiting into the toilet from the agonizing torture of this insidious illness.Some of the "lucky ones" who can feel human again are so filled with joy that they get back to their families and pray to god this crap doesn't hit again soon. Please try to read older posts and see if there is any help there. We feel your pain...honest! We'll be back soon.
CommentTO WHY, you come across as very demanding. Nobody is obligated to post and if you take the time and look back over previous posts you will find that most of us post over and over again. Sometimes there is nothing new to post, its already been said over and over again. I find that most of us that have anything new that might help others are very glad to share the info. I have found a wealth of info. on this web site. I realize that you are probably suffering like the rest of us and if you have any specific questions I can guarantee you that someone will answer you and let you know what has helped her. Getting upset is not going to help you. We are all suffering from this horrible disease and quite frankly there is no cure for it as of now. Different things work for different people so I suggest you start reading.
CommentDear Private, Im not demanding just scared and feel very alone. I have no one to talk to butthe people here. U must be more fortunate than me. Sorry for the trouble
CommentWHY..you are not alone. We are all here. What are your worst symptoms? Are you still trying to keep up an every day schedule, or, has VV changed your daily routine? Can you sit for any length of time, or is not an option? How about S-E-X? Comfortable or out of the question? This illness can change personalities..lives can go upside down. I've had other things go wrong through my life, but this is the WORST illness I can imagine...I still can't believe I have it. It is SO painful. Sally
CommentTO WHY, so sorry if I came across as one of the fortunate ones. I wish that were true. I do have plenty of friends and family but guess what - my husband is the only one who knows. I suffer every day with this horrible disease that I am embarrassed to tell anyone about, not even my closest friend, I am glad I got you to post back and now I am sure you will get lots of support. I know how you feel and you are not alone. Vulvodynia affects all of us in different ways and although none of us have found a cure we have been helped a little with meds, pelvic floor physical therapy, nerve blocks to name a few. Again I am sorry if I hurt you but that was not my intent. I just wanted you to post back and tell us what your symptoms are. You are right. That is what this web site is about - women helping other women. Will be waiting to hear back from you.
CommentSALLY,thank you so muchfor your response. I am so scared and so disgusted and yes my personality and my life has changed because of it...As I feel yours has also. My symptoms were first severe vulva burning, No underwear and not bath in the tub.Now I have this pinchy feeling in the clitoral area. i also have butt pain. I have been going to Physical Therapy for the Butt pain and at this time I feel it is helping. I still cant believe I have this. People dont want to hear it, they think its funny or they just say OH well...I have a sinus infection. I have no one to discuss this with and as far as thr DR. well I had to go from place to place like I am sure, everyone else on this site has done. It just seems to go from on symptom to another. Thanks Sally any suggestions from you would be a GOD sent
CommentTO WHY: There are other website that are more active out there http://vulvodynia.hannaoriginal.com this is a nice one. I use to posted a lot more when first got this years ago but I have tired just about everything out there except surgery and nothing has really helped. So I am just sitting waiting them to come up with a cure like the rest of us...
CommentDear Laurea thank you I will try that site.
CommentTo Why and other members, In the past, before I so stupidly weaned off of them!!!!!!!!!!(I was better, for God's sake, a bit. I could actually work and function like a relatively normal woman...I could wear jeans!!!!!! for goodness sake!! ((no penetrative sex, but who gave a crap??? I was almost pain free)) ),,,,,I was taking elavil ,40 mlg. and 600mlg. of neurontin. It took about 2 mths., but the pain slowly subsided. I was a happy camper. I am divorced, so , no pressure there. I am basically in a "pact" w/ some higher power...if I can be relatively pain free..I'll put sex on the back burner, so to speak. WELL..then comes the notion that I'm doing pretty well..& I'll taper off the neurontin. What was I thinking????????????? I also went back to 30 mlgs. of elavil. WRONG!!!!!! Within one month of no and lesser drugs.....I was cooked!!! Actually, I was fried..down below. And that's where I am. So,....what has worked in the past...elavil, neurontin, some Estrace cream, w/ Aquafor. That was the past...let's see about now. I can't believe I was so stupid. I've had severe VV since '95. At times, it has really crippled me up..literally. Dozens of dr.s, practioners, Pt's, nutritionists, acupuncturists, blah,blah,blah. Oh ..I forgot...creams that made everything much worse..pantyhose w/ no crotch(from Frederick's of Hollywood..how ironic..pantyhose for a hooker and I can't have sex...almost funny)....hundreds of supplements, too. Opps, don't forget the cotton undies and the scads of $$$ finding the right detergent. IN THE PAST..it was the meds that got me to a place of functioning as close to "normal" as I could get. What meds are you, WHY, and other members on that might help? Sorry if I sound bitter, but I either cry or get angry...today I'm angry! Sally
CommentWHY and members, Sorry I forgot in my previous rambling, once a cream called Vanicream worked a bit. I twas the only cream that didn't hurt or burn. Also, very few people know about my condition. It makes me feel like some "freaking phony", but I've learned that the average gal just doesn't get it. Also, in the medical community, if you're not bleeding from every orifice,,you're basically out of luck. My own GP deals w/ this for me. We sort of work on this together..she's clueless, but admits it. How are internals for you? I can't do them..might as well give me a lethal injection instead.
CommentDEAR SALLY, NO need to apologize for your anger,pain and just in general unnerved. Check back, remember that is where i was, I have not tried any of the meds. u mentioned. The only thing I use is zanax to relax me and that helps. I will see my GYN on Monday. The dermatologist told me that the skin in the V areas is a lot better than 3 years ago but you cant prove it by me. Always thinking about it and worring about it. I wonder why hormones and hormone creams help some and not the rest of us. It makes me soo MAD.
CommentTo WHY and other memeber looking for help_ I have tired everything neurotin elavil, 2 different PT, accupunture dozen of compounds and compounds with elavil and neurtion biopsy of the vulva. The only compound that helps numb the area for bit is lidociane, benadyral, trimosone ( some mild steriod). Earth mamma bottom balm have been my savor its all natural so it like the only thing the donsn't hurt me more here is the website it sort of gives the area cooling soothing sensation:http://www.earthmamaangelbaby.com/product/pregnancy/earth-mama-bottom-balm.html I am considering surgery because most of my pain in around the 4 and 6 O'clock postion on the vestibuliar glands on one side. I am afriad surgery will make it worse I can't handle any more pain. I have also tried prudunal nerve block and recently tried botox.
CommentHang in there everyone who is in pain (myself included)... I think we are some tough women to put up with this. If others only knew what we go through everyday, they would be so proud. I have suffered with kidney stones in the past and I would take a kidney stone everyday over this pain anyday! Well it has been 6 weeks since my botox injections and things are not improving. I hope my body is just slower... Wanted to get others opinions. If botox injections caused a setback in my healing process (it brought back symptoms I had when this all started, I am led to believe that my pain is all muscular/nerve related. Since the injections, I constantly feel like I have to urinate, especially while walking. Could this be from the muscle too loose and resting on the bladder or is some nerve been affected/pinched that is sending false signals to the brain. Does anyone else have this sensation? Is there a test doctors can run to test for pinched nerves. I have really had it. Getting 90% better and going back to 0% has been very frustrating. But I hold out hope that my body can heal again. Maybe it is a muscle injury that just got hurt again with the botox. Thanks for any help anyone can give. I'm thinking of you all and hoping we get better soon.
CommentTO MARY, what did u do to get90% better before the botox??
CommentTo WHY - Sorry for the pain you are you are going through. I have been suffering with this horrible disease for going on 20 yrs. I have been on all the meds, physical therapy, accupuncture, nerve blocks, creams, just to name some of the things I have done. I thought the post from Private was not very nice but in retrospect I think she was only trying to get you to tell us your specific problem. It worked. I remember when I first found this web site less than 2 yrs ago I had the same feelings of being alone. I never even knew there was a name for it and that so many women suffered with it. When I read all the posts I didn't feel like a freak any more. I still could not tell anyone but my husband. I only leave the house because the pain and burning has restricted my walking. I tell people that I get migranes and backaches. I was very interested to see that you said that xanax helps you. If it weren't for xanax over the years I would not have been able to hold down a job. How much do you take? I started off with the lowest dose but over time people build a tolerance to it and have to keep increasing it. I take 1 mg 3 x day and on stressful occasions would pop another pill. I notice now that it doesn't work like it used to and I will not up the dose any more. Its long term use is causing me to lose my balance and on a few occasions took a fall. I am retired now and I have started to wean myself off of it. Research I did on it says it is one of the hardest drug to get off of. I am taking it real slow and am not looking forward to withdrawal. Please keep posting. You are not alone. We may not have a cure for you but we can share our good and bad experiences. God Bless and like most of us this is a great venting site.
CommentMonica & all members, I, too, have been dealing w/ this illness for decades. In my case, 3 decades. At first it was manageable. I could still have sex but it burned a lot and I felt raw for days. I went to drs., but they thought I had yeast. It all started after a LONG dose of antibiotics for an illness that was never identified.I think it was chronic fatigue, but my dr. thought it was a bacteria or something. So, I took antibiotics for months. FINALLY, I got better. When I stopped the antibiotics, I got the worst yeast infection EVER. I'd never had one before! It basically never went away. We tried everything...just made it worse. But, I was young...so I just made the best of it. Then , in '95, one night , things turned for the worst. Severe pain, etc. Many months and drs. later, I ended up in the emergency room. An intern diagnosed me. I finally had a name to this stuff. He gave me elavil.And that was the beginning. I wanted to mention...about 10 yrs. ago, I was in a horrendous flare. I started changing my underwear 3-4 times a day. I got the flare to calm down!! It's not working this time, but it did back then! Gals, give it a go. Harmless, and it worked once. P. S. Does anyone here have problems w/ bowel movements and symptoms getting worse?
CommentMonica and Sally- It so sad to hear that you have been suffering with this for so many years. How do you live with it for so long does your bodies get use the pain? or does your pain tolerence go up? It sure doesn't give those of us that are younger and have this much hope. I had it for two years and I have come to the conclusion that I will have this the rest of my life becasue nothing really helps long term and ofcourse there is no cure. The only thing that temporarly helps me is the earth mamma bottom balm that numbs it with a cooling sensation for a few hours. Sex is possible if I put lidocaine compound cream on 20 minutes before but I burn for days after. My husband is pretty understanding but it sure does take a toll on your marriage. Take care and I hope everyone has a pain free weekend!
CommentDEAR MONICA AND SALLY:: SALLY, it is because of your kind words that I started to post my symptoms. You r very kinda as you r too Monica/ BUT MONICA, if you read back the post from private to my despair, is that how U would reply if U wanted someone to open up and post here?? I dont' think so. It was very hurtful to call me demanding. That wasnt what I was doing. So again to SALLY AND MONICA THANKS
CommentI wanted to ask the ladies that say that they hurt down there, how does it hurt? For me it just this burning feeling around the clitoris, but it doesn't really hurt, it's just annoying more than anything.
CommentI have all sort or pain when it start everything burned.. Mostly I have more of burning pain around the vaginal opening. If I don't rinse after going to the bathroom I have burning around urethrea and clitoris area. The urine makes me burn. I also have shooting pains sometimes so there are all sorts of pain with VV.
CommentTo None: I have been taking cymbalta and did physical therapy. I found the PT was painful for a few days after each session, but I think it helped the healing. I also stretch on my own. I also try to put it in perspective and try to keep my mind occupied. Not easy, but I find yoga classes help. I also was jogging (although now that has become impossible). The endorphins help w pain.
CommentTo WHY and members..Thanks for all the advice and kind words. I was out today and saw a young woman w/ the tightest jeans on that I had ever seen. The term "painted on" came to mind. Then, of course, as I walked somewhat bow-legged due to the "fire-below", I thought.."Boy..she sure doesn't have VV!" I am on my way to the Babies 'r Us to try that new cream. Hey , at this stage, I'll try ANYTHING. Maybe I should switch from elavil to cymbalta. I'm upping the neurontin..boy, do I feel fuzzy!!! Do I care? NOPE! If it can keep me from being doubled up..Hey , I'd chew 'em like candy!! Oh...on one of my flares, I used a cream called "Bag Balm". It is used for sore cow utters from milking machines. It worked for me once...but not now. It actually has sulfa in it as an antibiotic. They sell it at some drug stores..or what used to be Agway. Also, WHY, I'd like to especially thank you for your cry for help. I usually don't post, just read. You got me out of my private horror and out here w/ the rest of you. You're right. We just might be able to figure something out if people like me come out of our shelters and add to the dialogue.
CommentTO SALLY AND MARY...SALLY let me kno w how the new baby balm works out. I use diaper medicine in between my estrace creame. I know what you mean about girls with tight jeans. I find myself looking at women and saying to my self :"If they only knew: MARY I do physical therapy also and sometimes my butt gets sensitive from the excercises. I use zanax instead of cymbalta. Do you use any hormone creme or HRT
CommentTO SALLY AND MARY...SALLY let me kno w how the new baby balm works out. I use diaper medicine in between my estrace creame. I know what you mean about girls with tight jeans. I find myself looking at women and saying to my self :"If they only knew: MARY I do physical therapy also and sometimes my butt gets sensitive from the excercises. I use zanax instead of cymbalta. Do you use any hormone creme or HRT
CommentTO SALLY AND MARY...SALLY let me kno w how the new baby balm works out. I use diaper medicine in between my estrace creame. I know what you mean about girls with tight jeans. I find myself looking at women and saying to my self :"If they only knew: MARY I do physical therapy also and sometimes my butt gets sensitive from the excercises. I use zanax instead of cymbalta. Do you use any hormone creme or HRT
CommentTo WHY - I just checked back to your post and I just take it that PRIVATE might just be having a bad day and was in a venting mood. That happens to all of us at times. I have a few women that we privately vent back and forth to. For me the only thing that has helped me is the xanax but after 20 years its not doing the job it used to. You mentioned that xanax helps you. Would you mind telling me how much you take. We are very honest with each other on this web site. Its the only outlet we have to let off steam and I know I for one feel better afterwards. Hope to hear back from you soon and don't let PRIVATE'S post stop you from venting.
CommentHi Monica, thanks for your kind response. I take 1 mg of zanax 2- x a day, I use to use less. I also used testoterone compund which helped but I didnt like the side effects. i do know that some women use differentkinds of hormone cream and the burinign goes away. Do u use any or r you on hormone replacement.
CommentTO LAURA: I have had vulvodynia for seven years. My pain tolerance has not gone up nor has my body gotten use to the pain. I have concluded too that I will have it for the rest of my life. You mentioned that you burn for days after intercourse. I do the same. I use a corticosteroid, Lidex, though, on the vulva after intercourse for usually three days. I would die if I did not use this because the inflammation is so extreme. The Lidex works amazingly for the extreme inflammaton. I didn't know if you had tried a corticosteroid for the days following intercourse. Vulvodynia really does suck to put it lightly. From the moment I wake up to the moment I go to bed, I am taking care of my vulva like it is a separate person!! If you have any aching symptoms or pinpointed sore spots, I highly recommend Lyrica. I think there is some tie between urination releasing histamine and causing the inflamed skin. Has anyone noticed that constipation makes their prob. way way way worse!! It puts sooo much pressure on the nerve endings!! I have to sit every day at work so that makes it worse. Lidex, Lyrica, and Lidocaine (the three L's! ha ha) are my best friends with this prob. I am working on figuring out the histamine and oxalates thing. I thought I would try taking an antihistamine every day and see how it helps.
CommentWhat happened to this site, is it broken? No posts for weeks, and no more lively discussions? Dr. Oz did a segment on Vulvodynia and no one commented here, why?
CommentTo Carol...yes , this site was broken for several weeks. I called Glazer's office and left a message that I knew that the site was in trouble. Then, in a matter of days, the site was up and running. OK..question, ...I read a few posts ago that someone was having trouble with constipation making symptoms worse. I have the opposite problem. BM's make symptoms worse. They cause a rectal pain that is HORRIBLE. It doesn't go away either. Does anyone experience anything similar? And ...what can be done??????????
CommentTo SALLY, I also have promblems when having BMs so i started to eat about 5 to 7 Prunes per day and it has really Helped me.
CommentTO SALLY - I just read your post from June 24th and in spite of terrible burning right no (had sex yesterday) I had a good laugh. You went to Fredrick's of Hollywood for pantyhose with no crotch. I thought I was the only woman who needed such pantyhose except I was more creative (or cheap). I bought them at Walgreens and cut the crotch out. I have a drawer full of them and if anyone were to see them they would probably think I was nuts. I am retired now and hope I never have to wear them again. I think we are a lot alike. We have to keep our sense of humar and not let this horrible disease get the better of us. A cure will be found one of these days and soon I pray.
CommentTHIS MY TRUE STORY TO THOSE WHO WANT A GOOD LAUGH. Several years ago, before this thing got out of control...I was a party given by my employer. I had my usual pantyhose on and started to feel this terrible irritation in my V, my male boss was sitting to the right of me and a friend to my left and there was an empty seat and place setting next to her. I said to her "Linda give men that unused fork please. I went to the ladies room and ripped open the crotch until there was no crotch left and I did that all the time until I now cant wear anything that squeezes that area. She didnt know what to say when I told her what I did so she said LET ME BUY YOU A DRINK. I THINK YOU NEED IT.
CommentWHY and members.. So, week 4 of HORRIBLE flare up..2010!!!!! I've got so many creams on down below, I almost slip out of my chair when attempting to sit!!!!!!! Not to mention all the stains in the crotch area of my glamourous cotton underwear. I'm up to 900 mlgs. of neurontin. I feel like I've had 6 vodka tonics. The doubling over pain from the anal area seems to be lessening the last few days (THANK GOD!!!!!!!!!!!!) But...I've got a sinus infection. Let's see...V V full blown hell...or sinus infection with stuffy head, ache all over, want to sleep feeling???Hum...I choose suitcase #2..as my "Deal, or No Deal". At least I can walk. Right? Oh..I gave up crotchless pantyhose for thigh-highs. They usually stay up while cutting the circulation off to my lower extremities, or, the lacey kind roll down around my ankles after taking ten steps from my car. Now that's HOT..as Paris Hilton would say. :) Seriously, I don't wear any hose whatsoever anymore. It's just not worth it. Have any of you tried those special cotton things that they advertise on the web? They stick on the seam of your slacks and you don't need underwear at all. Yes , they were invented for women who wanted to be underwear and pantyline free. However, some have found them comforting for our condition. I'll research them and get their name.
CommentSally- I Have tried those things you talking about that stick you your pants so you go underwear free. I found that they didn't stick well they rolled up and ended up sticking to my leg. It was sort of uncomfortable for me anyway!
CommentLaura, Now I'm laughing!!! The thought of those pants inserts rolling up and sticking to one's leg! Truthfully, it seems like it would mean added pressure to an area that already has a seam that is causing problems anyways. Yes? I'm sticking to my cotton pantaloons. They even hurt. Of course...everything hurts down there anyways.
CommentSally- yes it sounds rather funny but isn't when you in that siguation lol lol I thought they were rather pricey also. I love there cotton underwear at motherhood. But every time I buy them they ask my due date so I just give them a date. They must think I had like 3 kids by now! Hey has anyone had partial vestibulectomy? I am considering this because most of my pain is locialized.
CommentHi Ladies! I was just checking in to read all th recent posts. Im having a pretty good day today. My medicine seems to be helping me ok. im still taking 450 mg of lyrica but had to stop the desipramine because it made my heart beat to fast and hard. I still wish so bad I could sit without the pudendal nerve pain. Ladies, maybe one day soon they will have a cure for us. I do know that since I have found this site I feel alot better knowing I am not alone..and I think about all of you women on this site. Well, I just wanted you all to know Im was thinking about you today. I hope you all have a wonderful 4th of July holiday. God Bless you all..Love, Sheila
CommentSheila, Why, and members, Yes, the 4th is upon us once again. I think the neurontin is kicking in. The fire below has notched down a bit. I guess I will have to be a "druggy" in order to function ...drat the luck!!! I, too, feel calmed knowing that we are in comradeship on this site. Here's hoping that our bottoms are not nearly as hot as the 4th of July's fireworks. :) Oh, almost forgot...I apply an anti-yeast cream from Walgreen's...their brand. I can only use the 3 day tube..it has no phosphorus. The phosphorus in all other creams burns me. I use this just in case I have any yeast floating around. It feels cool on application. Of course, I just rub a little on in the a.m. NO INSERTING!!!! for me. I know better. It's expensive..$10.99. I get very little itching if I use it. I SWEAR by this brand. Believe me, girls, I've tried 'em ALL over the yrs. and this one is the only one that , at least, doesn't hurt. Walgreen's has made a fortune off me, but this is one investment that has been worth it , for me.
CommentTO SALLY AND ALL MEMBERS I HOPE EVERYONE HAD A SAFE 4th of July. One question, does anyone get a pinchy like feeling in the V area anywhere and if so what do u use. THANKS WHY
CommentTO SALLY AND ALL MEMBERS I HOPE EVERYONE HAD A SAFE 4th of July. One question, does anyone get a pinchy like feeling in the V area anywhere and if so what do u use. THANKS WHY
CommentDear WHY, Yes, I get that pinchy feeling on the left side. Sometimes it actually feels like a pin pricking me. I use Aquaphor on it, plus a dab of prescription Estrace. It usually calms it down. I wish it worked on the rectal pain!!!! E-gads!! I went out and bought the prunes in hopes that that rear end problem calms down soon. Hot enough for you gals in the northeast? The heat makes me worse.
CommentHello ladies! I hope you are all having a good day today. Im doing ok today..Im suffering from a bad tooth (filling to deep) pain..root canal tomorrow,i hope. The only good thing about this horrible pain is that it takes my mind off the other pain..Do you all know what I mean by this?? ANYHOW, Sally I was wondering how your recatl pain feels??Does it ache really bad,burn??Do you have problems with bowel movements? I used to ache really bad and once in awhile OH MY GOODNESS..I get a sharp shooting pain after a bowel movement..scary feeling..Ive had to put an icecube between my cheeks to calm the nerves down. I now drink about 2/3 tablspoons of metamucil daily and it helps tremendously along with my lyrica. It is so nice to be able to talk with ladies that understand all of this. I'll check back in later with you ladies..xoxox to you all
CommentHI SALLY, THANKS for the advice. I will try the aquaphor. I will dab the estrace also. i found that eating the prunes keeps me regular and bowels r not too hard to pass and it helps the rectal pain. Give it a few days Hope you answer me and telll me it helps.
CommentHi ladies, my name is Desiree i'm 16 years old. I have vulvodynia, vestibultis, and neuropathy of the vulva. I wanted to let any woman living in FLORIDA know, i have found an AWESOME gyn. There is a doctor listed on glazers website, but i recommend this woman instead. If your interested in knowing her name email me. She treats vuvlodynia (it's even on her card) She is wonderful. ALSO COULD YOU LADIES VOTE FOR MY PICTURE? MY PICTURE SAYS "the love of a father" AND MY DAD IS WEARING A RED SHIRT, AND I'M IN A BLUE JACKET. HERE IS A LINK TO THE WEBSITE! THANKS (YOU CAN VOTE ONCE PER DAY) http://www.childrenseyefoundation.org/Programs/Eye-Care-for-Kids/Vote.aspx?page=2
CommentI am new to this site and this aggrevating condition is new to me also. I have bouts with IBS about 3-4 times a year, usually due to stress. A couple of months ago I had an "episode." In the interest of cleanliness, I have a habit of wiping vigorously after each trip to the restroom. I may go 15-20 times in a 2 hour period before my stomach settles down. I'm convinced that I injured some nerve endings with the toilet tissue since the first external burning started 2 days later. I've told 3 doctors that and I just get a puzzled look. I've been given a cream that is also used for poison ivy which set me on a fire, a steroid cream that didn't work, and Premarin cream which has helped some with the urethral discomfort. My main symptom is external burning---very little, if any, itching. I'm fine as long as I don't have to sit for any length of time. I was also given Cymbalta which I have not tried yet. My body is very sensitive to medication. I started taking Citrical with magnesium tonight. I don't have much hope of it helping but since I"m post-menopausal, I probably need it anyway for the calcium. I've always taken low dose of zanax from time to time to help me sleep. I have noticed that when I take zanax, it helps the burning for a couple of hours. Sleeping at night is not disturbed by this problem. I ordered Dr. Glazer's book from Amazon a couple of days ago (at least I think it is this Dr. Glazer).
CommentHi LAURA, I am sorry it has taken me so long to respond to your June 25th post. You asked if those of us that are suffering with this terrible pain build up a tolerence to it. For me my answer is a NO - FINAL ANSWER. I have suffered with vulvodynia for going on 20 yrs. I blame it on the high doses of antibiotics my gyn. prescribed for what he said was nonspecific vaginitis. After several months of being on antibiotics I went to two other different gyns. and they could not see any infection. One of those drs. must have seen that I was a wreck and prescribed the lowest dose of xanax. The xanax worked like magic. The burning went away for hours. I was like a different person. The xanax allowed me to hold down a very hard and stressful job that I loved. Like most other meds over time I had to to keep upping the dose to get the same affect. It was only 2 yrs. ago I found this web site and learned that what I suffered with had a name and that so many others were suffering from it. That was a tremendous relief to find out I was not alone, although I honestly didn't wish it on anyone else. I read back over years of posts and started looking for drs. with expertise in this field. Since then I have been on so many different antidepressants, MRSs, ultrasounds, neurologists, urologists, nerve blocks and on and on. I take 100 Elavil at night and allows me to sleep. I was up to 3 Mg and sometimes 4 Mg of xanax/day. Long term use of xanax brings its own bad side effects. I started weaning myself off of it about a month ago. Its a very hard drug to get off of. I am taking it very slowly and even at that I suffer a little from withdrawal. As much as it has allowed me to live a normal life I don't recommend it to anyone. I have sort of resigned myself to living with it for the rest of my life. Like you having sex don't hurt too badly but I burn for days afterwards. I am postmenopausal. I use Vagifem for the dryness inside and it works fairly well for me. I like it because its easy to insert, disposable and no mess. I feel so sorry for the younger women who are suffering. I had my kids before it started. The good news one dr. told me was that the younger students are learning about it in med school now. That gives a glimmer of hope. Forgive me for rambling on about my life. You asked a simple question but I am giving you your money's worth. God Bless!
CommentHello Why and members, A little update. ..I'm up to 900 mlgs. of neurontin. Also taking 40 mlgs. of elavil at bedtime. I added the prunes every day..3 or 4. (I COULD EAT THE ENTIRE BAG! YUMMY!) Also Aquaphor cream, a tad of Estrace, yeast cream,,,all twice a day. I use more creams as needed. For ex..if I feel a twinge of itching or pulling or pin-pricking sensations..out come my creams. Also, I do use a cream called Vanicream just to sooth the area. Thus...I can slide off a chair very easily!!! :) I'd say after many weeks of HELL..the last 3 days have been a lower level of pain. I'd say maybe a 3 or 4 out of ten. I can function somewhat if I DO NOT wear anything remotely tight, stay away from the dreaded, evil, pantyhose, and of course..stay away from penetrative sex. I'm leaving sex to the young and brave .
CommentMonica...my case of V V is almost identical to yours . I took antibiotics for 8 months. It was erythromycin. I was sick, but the dr. just didn't know what I had. So, I took the antibiotic all fall, winter, and into the spring. Then, I got my first ever yeast infection. And..it never went away.....just got worse. After yrs. of mild suffering, it turned UGLY and turned into severe VV. I agree, you NEVER get used to the pain. This illness has altered my life dramatically. I, too, am resigned to this crap, This is the way it is for me. I know women get over this...but I haven't. I've been at this severely since '95....firat yeast symptoms back in '86.
CommentMonica...my case of V V is almost identical to yours . I took antibiotics for 8 months. It was erythromycin. I was sick, but the dr. just didn't know what I had. So, I took the antibiotic all fall, winter, and into the spring. Then, I got my first ever yeast infection. And..it never went away.....just got worse. After yrs. of mild suffering, it turned UGLY and turned into severe VV. I agree, you NEVER get used to the pain. This illness has altered my life dramatically. I, too, am resigned to this crap, This is the way it is for me. I know women get over this...but I haven't. I've been at this severely since '95....firat yeast symptoms back in '86.
CommentThanks Monica! My case was similar to yours Monica and Sally. I was on difflican for 4 weeks high doses then like three different antiobotics. I am not sure the antibotics made it worse but they didn't stop the burning pain. When it started for me I was like a month pregnant and they thought mine was hormone related. When it didn't go away after pregnancy they know it was not a hormone related. Ijsut happend to be pregnant when I got it. Plus I have tried the estroil cream it didn't help me. Moncia and Sally is your hormone realted, muscle, or more a nerve/skin issue? Have you ever consider the vestibulectomy? I know this it only will help people whos vulovdynia is related to nerves. They say the surgery works best an people that have secondary VV, means they got it in the childbearing years or its not hormone or muscle related,
CommentSALLY, I am glad u have added the prunes. They will help ease your bowel movements and cause less pain. I wish i had you great attitude toward all this. I am so glad your pain level is down. I know what u mean about bringing out the cremes with just the hint of a pinch or pin pricking or iritation. I am the same way with this. It really scares me sometime especially at nite when I am trying to sleep. These scary thoughts creep into my mind and it makes my nerves get really bad then the skin gets worse. It is horrible. I like when u post it makes me feel a little uplifted. U have a good attitude.
CommentDear WHY and members, Thanks for saying I have a good attitude. Truth be known, I'm the "Queen of Pessimism" when it comes to this condition. For ex....today I went on a shopping spree to cheer myself up, yes? Massive summer sales going on due to the fact that the fall fashions are practically on the racks already. Anyhoo, my symptoms were up today for some unbeknownest reason (the planets were misaligned within the Milky Way???) I've been taking all meds, slathering on all creams,etc. I tried on a pair of shorts and did the obligatory knee bend and sitting to see if they'd rub the wrong way. Boy, did they ever..ouch!! Guess who didn't buy those!! Yup, 'twas I. Foiled again!! I'd give my eye teeth to wear what I'd like. So, I must admit, I did not have a very good attitude today.
CommentDEAR SALLY, strange as it may seem...i didn't have a good day today either . I tried everything I had and it just kept coming like a train out of control. OMG this is so disgusting. Yes, I would like to wear somethig fun. I guess it wont' happen im the near future. But they have something that helps ERECTILE DISFUNCTION....
CommentWHY...that's the best laugh I've had in AGES!!!! Thank you. I've been sitting here steeped in creams, potions, and some medieval unguent that I found at my mother's house. On top of all the bottom problems, I've got a summer cold. In my case , divorce helped remedy my problem. People ask why I don't date. I tell them Bill Gates is happily married..darn it!
CommentGood luck to all of you. From experience I find Cymbalta is very good. Find a good PT. A couple of helpful books are A Headache in the Pelvis by Wise and Anderson. Heal Pelvic Pain by Amy Stein.
CommentI have just started using capsaicin- it's too early to know if it's working, but if anyone else has used it, I'd be grateful if you'd be willing to talk about it in detail via email or on this forum. I could use the moral support! Thanks!! :)
CommentI have suffered from Vulvodynia for about 2 years, no one could tell me what it was. They finally diagnosed me about a month ago. I study natural cures, Vitamins and supplements and have found a few things that seem to help. I hope I can help some of you because I understand how terrible this can be. First Please read about Magnesium, I started taking a 2-3 ratio of Magnesium and Calcium this has helped so much, after being diagnosed they tried to put me on Elivel and I declined after reading about it, I discussed this with my Ortho and he suggested Lyrica, I'm not big on medications but would do almost anything to get rid of this pain and burning. The Magnesim worked immedaitly on the burning but there was still so much dryness, I started the Lyrica and within one week I was able to remove my estring. They had me on 50mgs to start and have now increased me to 100mg's. I believe the Magnesium and the Lyrica is a good combination and I really hope this will help others. I really appreciate your posts you do feel alone with this terrible problem, its not like I want to tell anyone about my problem.
CommentHello, I've also had vestibulitis for a very long time (> 20 years). It was very difficult way back then to try to explain this to a doctor as this was not well known in the medical profession. Anyway, my condition has come and gone--never completely gone but enough so that I had a child 10 years ago. It's back in full force recently. I am postmenopausal now, and the vestibule area is inflamed and tender. Intercourse is out of the question. Steroid creams help a little and lidocaine jel. I also now have a problem with a chronic anal fissure. The nurse at my doctor's office said that she has heard that anal fissures and vulvodynia/vestibulitis can go hand in hand. Does anyone also have an anal fissure? If so, what treatments work for you to relieve symptoms? I do not want to get surgery for this if I can avoid it. Thank you.
CommentHello everybody! I was just wondering if anyone on here has tried a chiropractor? Since my vulva/vaginal pain is accompanied with pudendal nerve (butt) pain i read maybe it has to do with something in the extreme lower back? Im up to try about anything. Just to recap... y problem started in March of last year..so almost a year and a half ago. I thought i had a uti and stayed on antibiotics for 30 days then sent to urologist to be told i had ic..by now (may) i am having EXTREME vaginal burning at the intrance to vagina (feels like the inside) and going from doctor to doctor and finally a gyn did a biopsy and came back chronic inflammation caused by yeast infection..i thought great!!!!!!Now give me some meds to clear it up now that we kn ow what it is......geez...little did i know of the journey and pain that lay ahead :( i stayed on diflucan for 6 months (not needed,i dont thn k i had one..no itching ,burning..ver little discharge..I thnk diflucan caused that.Anyhow, she started me on lyrica 75 mg and the burning went away..im now on 450 mg of lyrica ..The worst part of all this is i am left with pudendal nerve pain..i can not sit on my butt for more than 15 minutes without pain..after bowel movements sometimes i feel nerve pain also....ughhhh it hurts so bad. Im afraid it will get worse..the nerves wont heal???It seems if the burn stops the nerves should heal?? I dont get it. So Im going to a chiropractor to see if he can help the pelvic nerve pain. i don feel lately that the vulva seems to feel kinda hot with heat and a few sharp pin like sensations :( living with this is like living in torment..you never know what is coming..is it going to get better?Worse? Terrible. A good book that has helped me the Vulvodynia Survival Guide. Im gonna ru..Please email me if any of you want to talk...I live in louisiana..anybody close to here????? Ill check back later..God Bless you ladies <><
CommentDear Why, F. Stein and members, Briefly, I kept this condition at bay w/ neurontin and elavil. Weaned off the neurontin only to get the symptoms back, two-fold. Went back on the neurontin VERY QUICKLY and was doing OK until a week ago. The burning is back and it is awful. Also, I have anal burning and pain. My dr. says it is not a fissure, but feels like one. It is the vulvodynia spreading out towards the anal region due to the fact that that area is all interconnected..nerve and muscle wise. I've tried creams, meds , EVERYTHING except surgery. I, too, am getting desperate once again. Luckily , I do sleep w/ the elavil. However, I wake up to this burning pain. I'm having trouble walking now. I, too , am post menipausal. Basically, I'm too old to handle this crap!!!!!!!!!!!!!!!!!!!!
CommentTO SALLY Damn it....I am so sorry that u r getting the burning even goin back on your meds. I have not tried any of the meds yet but now knowing u have to keep uping the dose and it still comes back is making me very scared. It could spread ????Oh Dear LORD why cant some research be done so we can get some real help.???I am sick of this CRAP too. I am over the hill and dont need this in my life. I want to enjoy what the rest of my life has to offer and I cant. Like all the rest of us it is taking over my life....Has anyone ever gotten completely over this. I keep reading back and so many women don't post anymore. R they cured....???
CommentWHY, I'm SO over the hill it's pathetic! I retired from teaching a year ago. I don't know how I worked through bouts of this heinous crap..I really don't. Luckily, I had tons of sick time accumulated. I, too, am scared out of my pantaloons. I'm back on all meds, creams, etc., and fell back into pain after that shopping spree last Sunday. Yes, some people do get rid of this. At least they get it so it doesn't ruin their lives. I was OKish until I was 44. Then , I" hit the skids," as they used to say in the old days. I don't even want to go to the dr. for this anymore. What for??? New meds??? BTW...I'm going to be 64 soon. That makes 20 yrs. of this. Holy Cow!! I did have yrs. with very little pain. However, something always brought the pain back. Hot weather, tight jeans, or attempted penetrative sex, bring it all back.Notice I said attempted!!!!) Phooey. I remember wishing jeans would go out of fashion. Only farmers wore them when I grew up. You wouldn't be caught dead in jeans back in the 50's and 60's. Now, you wouldn't be caught dead in anything BUT jeans. How ironic. Wish I'd bought stock in Levi!
CommentOkay, ladies, Desperate times call for desperate measures -- right? This morning as I was getting my morning Dr. Pepper out of the refrigerator, my eyes came across something that has been in the fridge for years -- Mary Kay Eye Mask. I don't use it but it is a gel made for puffiness of the eyes. I decided to look at the ingredients -- Green tea extract, cucumber extract, witch hazel extract, chamomile extract, comfrey extract, dog rose hips extract, euprasia officinalis extract. All are botanical and as I looked up each one, each is for skin irritations and have soothing properties. I'm NOT suggesting this for everyone, but I am going to try it -- and not on my eyes! Just a thought..................
CommentMembers, Sorry about the"only farmers wearing jeans" statement in the above post. It is probably not a "politically correct" statement ??? We WERE farmers. I grew up in jeans on the farm. Hey..at least I could wear them back then...right? I'll try not to complain or vent so much. If there are any members who would like to correspond by e-mail...let me know and I'll post my address. Be forewarned...I vent a lot in between trying to sort out this puzzle of vulvodynia
CommentHi Sally/everyone! Sally, I would love to chat email. It sounds I have the same symptoms as you. Ive posted a few times on this site. The last week it seems the vaginal burn is coming back (this is how it all started) I dont know which is worse..having extreme vaginal burning or not being able to sit because it has spread to the butt cheeks. Its such a tormenting condition. I wake up every morinig and for a split second I feel normal and then I have a very bad feeling of doom and gloom. Its very hard to stay positive. Im scared its going to get worse. I dont know where else to go because know one really knows what to do but give the meds..I WANT A CURE. I posted im currently taking 450 mg of lyrica which helped tremendously in the begining (ive been on it since thebegining...maybe its not workiong anymore???I dont know or maybe the condition is getting worse??) I also have just started 1200 ic/mg (whatever it is) calcium and 500 mg of magnisium. Ive tried elavil but geezzz its awful side effects are the worst and i couldnt get past 30 mg. Ives also tried desipramine,made my heart beat really fast and HARD, lexapro raised my blood pressure, cymbalta, made me angry just to hear my childrens voices..ugh hated that one ! Steriod cream I felt that made me burn more. I think that about covers the meds. I feel handicapped with this illness. Im tired of laying on the floor at home! Oh I also tried physical therapy with not much luck (although I had started lyrica so maybe I couldnt tell??) I am going to try chiropractor..maybe it has something to do with my lower spine. I havent read a whole lot of wome on this site that have pain in the butt cheeks with this condition. Once in awhile (about 5 times over the course of a year or so) I get a very uncomfortable stabbing aching like pain in the rectum after bowel movements..UGHHH thats how I can keep count..ITS AWFULLY scary. Im just exhausted. Im 41 years old and I dont want to look forward to this for the rest of my life!!! I feel sorry for my family having to see me cry so much ...sometimes everyday! No one knows what to do to help me..I wish I had someone to tell me where to go and who to see..but when and if tehy do..Im sure there going to give me what the book says...everything Ive already tried :( I have the vulvodynia survival guide...EXTREMELY GOOD BOOK..I follow it..There are lots of women who can keep conditions at bay so hoepfully one day we will all find something that works for us. Im sorry Im babbling this morning. Im on vacation this week (first time ive taken a vacation and stayed HOME in 15 years.. I dont know what to do..my favorite hobby is crosstitch and I cant do it very weel without sitting, cant enjoy much of anything laying on the floor and standing puts so much pressure on the vulva that it just aches and burns and so forth..WHAT TO DO????? I tell my husband What am I going to do when ive agaed..How am I going to get down on this floor??? I guess I will close for now but im always up for making new friends..I sure wish I knew someone who lived close. Ive met a few very nice ladies on this site. Imlooking forward to meeting more. God Bless you all so much :)
CommentDEAR SALLY, I WOULD LIKE TO E MAIL YOU IF U WANT TO POST IT,
CommentHello everyone!! Well I just got back from picking up my mri's (lower spine and pelvic) I wish they would have showed something in the spine so that maybe my problem could be fixed. Im sad to say there was NOTHING! Though I will show to chiropractor next week to see what he says. Im tired of giving money to these doctors if they really cant make me better. I had hope for the spine as maybe something could have been done. This illness is pathetic..its up and down with emotions..MY young daughter says Mommy never give up and TRUST IN GOD..she says God told her he was going to heal me..She is a very sweet girl and Im thankful my children can boost me through some of this hard time.. God Bless you all
CommentDear WHY, Sheila, and Members, There is my e-mail address. To Sheila, I have the pain w/ bowel movements also. However the pain remains in the anal canal and intensifies over the day until I'm just about hysterical. (Am I being too anal?:) ) We do have a lot in common w/ this illness..its onset in particular. I'm SO sick of dealing with this!!!!!! WHY..are we close in age at all? I've lost track. Of course, I've lost track of a lot seeing I'm concentrating on bottom problems 24/7. See you all here or on e-mail!
CommentIM BACKKKK! Hello again ladies! I just wanted to drop in an dsay hello this morning..I feel as if you've become my family,lol. Little humor first thing in the morning..it wont last..as the day goes on everything seems to get worse :( i have decided to go see a doctor renney in Houston Texas (if im accepted..have to do a phone consult first) he deals with PN or PNE..pudendal nerve.. I know i have that damage since I cant sit on my butt cheeks and its relieved on a toilet seat..I dont want to live the rest of my life like this. Once and for all I want to know if this can be fixed. The web site says that sometimes vulvodynia is called to be the cause but its not. So i dont knwo..I just know I cant sit and i also still have some vaginal burning and sharp pains and i know it can continue to get worse and the longer you wait the harder to treat. Im hoping that a simple steriod shop by a good doctor will be helpful or cure..it says it can!! I have to be hopeful. My only BIG QUESTION IS THIS...If I do have vulvodynia (which they say casued by chronic yeast...weird iv ehad one in my life and not another since) and i have chronic inflammtion then wouldnt my nerves become inflammed again??Strange.. So much going through my mind..i dont even know how we will afford for me not to work if i did have surgery or how to pay such a huge bill...I guess that should be the least of my worries this morning. I feel for evryone that has this horrribe illness..I wish they find a cure for us.. :( I thnk I still may go see chiro next week..Why not all the rest of them get my money and do nothing ,lol! I guess I will end here..I just wanted to let you all know what my next step is.. Im tired of this! We will talk soon..Sheila
CommentHi ladies, I've been reading through this guestbook for about two years now. It just seems like everyone has something different that helps them. Well, I have been helped by a combination of 25 mg Nortryptiline and 200 mg Lyrica. It's not perfect, but I can get through the day with little to no burning- still have to wear dresses or skirts or VERY loose pants. All with no underwear. I have been using Capsaicin recently- only for a week. And now all that rawness and soreness is back. I am willing to stick out the pain since it's not awful, but I sure hope the Capsaicin works because I was feeling better before starting it. Apparently it works by damping down the nociceptors- the nerves that are causing the burning. Well, I will keep you all posted. Someone on here posted good success with Capsaicin. I'm going to try the magnesium and calcium too that someone mentioned. I think it's up to us to be our own doctors unfortunately. I'm a teacher too, Sally and sometimes I don't know how I've made it through the school year. I just need summer break to go on forever so I can keep trying things!! wishing you all the best!! :) keep posting- we'll all find some light at the end of the tunnel. There is strength in numbers! Trying to remain hopeful! Lord knows I've had plenty of bad days crying about all this. Just like many of you...
CommentHello everyone! My name is Sarah and I'm 23 from the Chicago area. I'm excited to hopfully have you all to talk with for support! I've had vulvodynia for a year now. I have pain where you enter the vagina at the 6:00 location. It goes up the sides as well. It is HORRIBLY painful. It is so bad that I stopped doing anything sexual at all and burns badly on urination. I also went through a handful of doctors until I figured out that I wasn't crazy and this IS a real condition. I have went through many creams and am now taking neurontin( or gabapentin 100mg). This is my first real attempt towards hopful relief for me as I was just recently diagnosed with vulvadynia. I am currently single and now afraid to even re-enter a relationship. I never imagined myself single or alone. I want a family and kids and now I feel at a complete loss. Is anyone married or sexualy active with this condition? Any success at all? I was also curious if anyone has made the effort to change their diet. I read that eating foods with low oxidates can be helpful. Anyone is more then welcome to email me. I would love the support. I am an NVA member. I want to help towards the cure as much as I can.
CommentHi Sara! I hope the medicine is working for you. I have the same symptoms as you..the burning at the entrance to the vagina and Im currently taking 450 lyrica. Its been over a year now and it seems the burni ng may be starting up again..time will tell. I had a biopsy done that showed chronic inflammation, YUKKKK! I dont want it!!It seems like they could come up with a medicine to help us all with this inflammtion. I asked my doctor to give me celebrex and he said you look fine..uGHHHH..The inflammtion lies below the skins surface(sometimes not visible). Im now waiting to talk to a doctor on the 6th august for my problem with pudendal nerve pain.I am doubtful he will be able to help..but who knows. This condition is for the birds. my life is totally different now :( Its nice to have this board to communicate. Anyone feel free to email. God Bless you all
CommentHey Sheila, I just started the neurotin but am only on 100mg so I will be calling the doctor to increase the meds soon. My doctor works really well with me so I am lucky in that way. She has diagnosed vulvodyna before but has not seen alot of it so I'm wondering if she will up my dosage enough. I've heard that it goes up to like 1200mg. I am going to see a specialist that deals with vulvadynia for a second opinion and he will probably know that the dosage needs to be higher gradualy. I have a list of doctors who understand vulvodynia in different states if you need any help searching? How is the lyrica working for you? Did you find relief for a whole year and it just now has began acting up again for you? I agree, you would think something like inflammation could be taken care of with a magical oral pill. Add the nerve pain to it and WOW...pain! Nerve pain anywhere has to be taken care of I guess otherwise it will flare up even if its your back or another part of the body so I understand that I guess. I don't want it either! I've taken celbrex before for a nerve in my back but I don't think it did much for me. Very true that inflammation may not be seen. That's the crazy thing with this condition. The doctor may tell us that we look great and healthy when in reality your like NOO I'm not. Trial and error is the process for me until I find something that will relieve it even a little. I am going to try a cool shot of water after urinating and a gel ice pack at bed time or when I can. I want to try and stay strict on keeping up with taking care of those nerve endings and reducing them as much as I can. I just tried lidocaine because I was told that I should apply it every night to calm the nerves and it will get in a system and hopfully be benificial. for some reason it burned a little when I applied it but it's not hurting right now. I really hope you find a doctor that can help. When you say your life has changed do you mean with daily functioning or with relationships? I'd love to hear. How old are you and how long have you had it? Anything you are willing to share would be nice! Thanks for writing, Sar
CommentHey Sheila, I just started the neurotin but am only on 100mg so I will be calling the doctor to increase the meds soon. My doctor works really well with me so I am lucky in that way. She has diagnosed vulvodyna before but has not seen alot of it so I'm wondering if she will up my dosage enough. I've heard that it goes up to like 1200mg. I am going to see a specialist that deals with vulvadynia for a second opinion and he will probably know that the dosage needs to be higher gradualy. I have a list of doctors who understand vulvodynia in different states if you need any help searching? How is the lyrica working for you? Did you find relief for a whole year and it just now has began acting up again for you? I agree, you would think something like inflammation could be taken care of with a magical oral pill. Add the nerve pain to it and WOW...pain! Nerve pain anywhere is hard to get rid of I can assume or at least acts up every now and then. I don't want it either! I've taken celbrex before for a nerve in my back but I don't think it did much for me. Very true that inflammation may not be seen. That's the crazy thing with this condition. The doctor may tell us that we look great and healthy when in reality your like NOO I'm not. Trial and error is the process for me until I find something that will relieve it even a little. I am going to try a cool shot of water after urinating and a gel ice pack at bed time or when I can. I want to try and stay strict on keeping up with taking care of those nerve endings and reducing them as much as I can. I just tried lidocaine because I was told that I should apply it every night to calm the nerves and it will get in a system and hopfully be benificial. For some reason it burned a little when I applied it but it's not hurting right now. I really hope you find a doctor that can help. When you say your life has changed do you mean with daily functioning or with relationships? I'd love to hear. How old are you and how long have you had it? Anything you are willing to share would be nice! Thanks for writing, Sar
CommentHi Sara! Good to hear back from you :) Im 41 years young and have to teenage daughter and happily married. I got this condition one year and 4 months ago. It started with realllllly bad vaginal burning and then led to pain on my butt cheeks with sitting. I have read that chronic inflammtion will damage or compress the pudendal nerve..which starts at the butt cheeks and travels. I havent had a whole lot (maybe like 6 times) of sharp shooting nerve pains in the rectum or vulva area..PRAISE GOD! You see I can remember how many times. I get scared because i hear that it gets worse..but i dont know. I can have sex..maybe once a week and it lasts about 2 minutes,lol. Thats all it takes for my hubby and thats ok with me,lol. I miss it and i know other things can be done but quite frankly im not in the mood but i try and do what i can. I dont have pain during the act but after sometimes i burn a little. The last 2 weeks my vulva/vagina has been burning so i dont know whats going on..IS the inflammation coming back? Do I have an infection again?I am going to try and get an appointment and check up but every doc here that ive seen doesnt know much about what i have..they give what i want basically. Im so sad that not only do I have the RARE vulvodynia but I also have the VERY RARE pudendal nerve pain which vulvodynia has caused. Dang it they do surgery in France..what the heck!!!!! Why me????? So fustrating. You are so young Im sorry you have to deal with this. Many women get much better with meds..I hope you will. Lyrica is ok but not good enough.I think I may have to try neurotin..Are you getting any side effects? I know I just cant sit on my butt without apina dn my vagina is burning!!! You should check out or buy the book online at barnesandnoble.com The Vulvodynia guide..I basically follow that and give advise to my docs..VERY GOOD BOOK.......You should check it out! You can email me anytime..I live in Louisiana..and Im on facebook (EVERYDAY,LOL) Sheila Kile if you facebook..dont worry I dont announce things,lol..Have a wonderful day.. :)
CommentSheila, I like the happily married part! I also like that you can have intercourse once a week! That gives me hope but still makes me scared to be with someone! I haven’t had to worry about it until now so it’s changing my life in that way. I have some pain on my butt cheeks if I sit on hard surfaces like school chairs or bleachers sometimes and if I’m sitting along time then I definitely have the pain. I worry about the getting worse part too. It sounds like we have the same kind of doctor. Neuroton has actually been helping me so far. It’s supposed to help with appetite I read somewhere too so I take it in the mornings after I eat breakfast. There's some medication that can make you gain weight so I try to stay clear of those. I’m not sure it’s been helping me with food but that’s not saying much for me! LOL! I am hoping to gradually go up in dosage so as I go up I will let you know if it helps. I heard that vulvodynia surgery is very successful from an expert but I’ve read some scary things so I dunno. I just bought the little squirt bottle! France…wow! LOL! It’s so frustrating..I really hope someday and I want to say SOON they figure something out. I would think the neurotin may also help with your pudendal pain possibly since it’s supposed to help with nerve pain? I’ll have to check the book out and see what kind of new info or ideas I can get from it. Thanks, Sar
CommentHello again Sara!I surely want you to let me know about neurotin. I think i may be switching,,ugh i hate to wean off of this stuff. Just think I used to hate to take tylenol.Elavil made me gain about 25 pounds quickly..never in my life have i experienced such an appetite and i dont even think it worked! Actually, I couldnt really get passed 30 mg. OK, what i want to know fcrom you is..........when you sit on your butt for awhile how does it feel? mine is like sitting on hot coals.I also think im getting another yeast infection. I had to take diflucan for 6 months once a week last year. Have you ever had a biopsy of the vulva to see if u have inflammation?Isnt it nice we have this site to find someone to talk too and see if someone has the same symptoms? Have a great evening.Sheila
CommentSheila, My butt cheek pain doesn't sound as drastic as yours but I know that when I sit on anything hard for a good amount of time I really struggle. Mine actualy almost itches really badly as well as feels like really small tiny sharp pains that keep shooting and itching. It gets alot worse if I were to take a bathroom break and sit back in the chair or bleachers. My butt cheeks are hot but don't feel completely like hot coals but it is very hot temperature wise. I can't imagine if it were coals and extreme pain on top of what I feel. The doctor told me that elivil or neurotin were the two best choices and I went with neurotin because I feared gaining weight. I have not had a biopsy done alothough I am going to see a well known doctor for vulvodynia soon and I will go from there on suggestions and will update you. Even if I have inflammation what could I do other then take my medicine and do the small things? I feel like theres no great option but what I'm doing. I know that my vulva was extremely red but it has gone down in redness each time I've seen the doctor and now is to the point where it looks healthy. It's really frustrating that if we have an infection the vulvodynia flares worse like yeast or bladder. I wish we could just take the prescribed yeast medication instead of having to go into the doctor all the time. Medication should be eaiser to get or something with our condition. There are those yeast pills you can take everyday over the counter though. I haven't done that but maybe I'll consider it because you never know and in many cases you have to have a really good doctor that can look under a microscope and see the yeast. Alot of the urine tests come back negative for yeast when really you have it is what I found from another lady. I feel like I get infections all the time and I just think it's part of the vulvodynia. It's SOO frustrating!!!!!! I really hope that your bottom pain goes away. Are you dealing with that right now? How long does it last and is it only when your sitting too? Thanks for the chatting! Sar
CommentHi Sara! I guess we are just taking over the boards arnt we,lol? Yes, Im having the pain now. I guess what you feel on your butt is what Im talking about..because mine feels really warm but no shooting pains in the butt cheeks just heat. It doesnt hurt when I move around though I worry about the pain becoming habit for the brain. Im waiting to talk to the specialist from Houston and hope he can suggest a block or something. My butt hurts after i sit for about 10 minutes I guess. It also seems like it is spreading to the outer thighs and below my butt cheeks. Its been a year and 4 months of this..ugh..I may call the doc and see if he will give me something over the phone. My doc is not the best, he basically gives me what I want. I believe you will be happy if you order the book..its been my guidance. I also ordered another book I should be getting soon, its the story of 90 women with vulvodynia.Ill let you know how it is.Isnt it nice to have women to talk too? Is your family helping you through this hard time?I appeaar perfectly normal on the outside of the vulva but I really do feel like an infection has come back OR it could just be vulvodynia itself..who knows????I dont think the doctors know thats for sure!! Dont forget I have facebook and we can send privatly there too.I have a few other ladies on my facebook that we keep in touch there too..its great.. I will check with later..Sheila
CommentSheila, LOL! I guess we are. Have you tried estrace cream did you say or has anyone? I was thinking about giving that a try. I absolutely agree with the becoming a habit in the brain. That's the worste feeling. I have heard that blocks are not that successful unless the doctor is very good at hitting the exact spot and if its more then one area I dunno. I was also told to stay away from Interferon shots. Cortizone or Lidocaine shots may work. A year and 4 months..wow! I'm sorry! Ya, let me know what the book is like. My Mom is really supportive about it. Thanks, Sar
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CommentTO CHERYL; I havent seen you post on the site for a long time. You helped me quite a bit along with a few others. I would like to know how u r and r u still using Lidocaine Thanks
Commenthello everyone! .... got diagnosed with vulvodynia ,, been haveing it very badly for about 3 yrs since i was 15 im now 18 ..it got to the point were i could not get out the bath it was burning that bad it feels like i have a blader infection 24/7 And that what i thort it was and it kills to have a wee .. been bleeding for 5 month .. been told the bleeding had nothing to do with this thay dont think? ...got put on amitriptyline and thrush pills for 3 month thay dont seem to be working ... is there eneything i can get to stop the burning because its geting realy bad now :[ ?? xx
CommentHello, my name is Bliss. I am currently seeking a vulvadynia specialist in the Louisiana area. if you have any information please let me know!
CommentHi Libby! im sorry you are suffering at such a young age. One thing i would suggest is lyrica or neurotin because they work on your nerve endings...which your vulva is full of them! I am on lyrica and it stopped my burning though i have other nerve pain it hasnt helped. Its surely worth a try. Bliss, I live in the Louisiana area...shreveport/bossier..and i have yet to find a specialist. Basically Ive been to at lest 6 gynos and they all just give me what i ask for to keep me happy. I buy the books and educate myself the best I can and then go to see doc.This condition just plain ole SUCKS! I think im about to switch meds and try neurotin...I hope the two of you can find some help on this site. Please email me if youd like. Have a blessed day..
CommentI have some news ! My doctor had a cancellation in his schedule for surgery I ended up having my vestibulectomy vaginal advancement with vaginoplasty surgery on wednesday afternoon. The surgery went well was painful but they gave me good pain meds. I am on oxycontin and motrin 600mg needless to say I am pretty much out of it I pretty much just sleep. After the surgery I wasn't able to pee my bladder and urethera was really swollen from the them operating on my vestibulitis area it made the whole thing swell. It was 11PM wednesday night and it took them 12 tries for them to get catheter in, it was awful. My doctor had me spend two night in the hospital do to not being able to pee. It was suppose to be outpatient surgery. I haven't went # 2 sense wednesday morning so I am taking miralax. Friday morning was able to go pee to pee my own they sent me home. I seem to have more pain on the right side of the vestbulitis area. I have also been taking sitz bath a few times a day. It sucks laying here but at least I have my laptop. I miss taking care of my kids my parents have been helping with them. Pray I heal fast! As long as I take my pain meds I am ok I am off work for a few weeks. I see the doctor thursday not sure how long we have wait to see if it work. I don't expect to be 100% but hope a it helps some. A great drug that helps is oxycontin I only take 10mg but it sure does help. In the hospital the were giving my (dillutin spell?) and tordal in my IV those were great also! If anyone has any question is regard to the procedure feel free to e-mail me.
Commentsheila thank you ...i will try them,.i think a lot to do with this,is when it does hurt its in your head most of the time that it is burning and it's just geting on top of me i real do hate it i carnt even sleep .... pain kills dont work :[ and it does mess up your life because you have to work around the pain !!! i just want 2 get better now xx
CommentLAURA, I was really interested in your latest post. So glad you had the courage to have a vestibulectomy. I am at that point right now. There doesn't seem to be no other option. It is so nice of you to be thinking of us when you are in so much pain. I am certainly praying that it will be 100% successful for you. We will talk more about it when you are feeling better and until then I will pray for you and may God Bless you.
CommentHello, I am going to post this in the hopes that it might help someone. I do not know what the disease is caused by and what it is, I do not believe that pain comes from nothing. There must be an infection, past infection, sensitivity, I do not know. Mine started after a yeast infection was misdiagnosed as a bacterial vaginosis. I got Metro gel and that is when it all started. I woke up in excruciating pain that I realized after a few days and then weeks is not going away. I went to multiple OB/Gyns, etc, nothing was ever found. I tried multiple things, nothing was helping. Antibiotics, antifungals, natural treatment, nothing was helping. I lived with it for a few years, depressed, reading and searchiing this blog for a cure. Then by accident I read an article by a doctor from Australia who said that it is a good idea to wash certain areas with distilled water. And I started dong it, take a shower, but not wash. Wash afterwards with distilled water. I felt the relief almost immediately. I have been doing it for a while, and it has gotten a lot better. So just hanging in there, if it helps someone else, great.
CommentMonica- Thanks for your kind words! I am pretty much in bed with my laptop right now recovering so I love e-mails. lol lol lol If you have any questions about the surgery feel free to ask on the board or e-mail me. I will update the board on my recovery every few weeks.
CommentI watched a program about strange sexual problems on The Learning Channel tonight. One of the cases was about a young married woman who had painful sex. She was finally diagnosed with Vulovdynia, and her obgyn said nothing is really known about this disease. Millions of us suffer from Vulvodynia at some point in our lives but there is insufficient research. "No name, no e-mail", and unfortunately NO Progress!!!. This Guestbook is a wonderful place to share personal experiences and offer support, however more is needed. We need to get angry, we need to organize, we need support, we need publicity and research.
CommentCarol- I watched the same program on TLC I hope they replay it for some on the other girls can see it. It was an hour show on sexual pain and other sexual disorders. Needless to say they didn't say anyhing that we don't already know they said they had no idea what really causes or cures it and we do need more research. Sort of like the segment on 20/20 or the Dr. Oz show on vulvodynia. There married girl had primary vulvodynia and had the vestibulectomy and she got no relief from it. So I guess it just something we have to learn how to manage some how. She had a child and a supportive husband and they could have sex but it was painful for her she used lidocaine with sex it brought her pain level down from a 10 to a 6.
CommentHi Laura! I dont know much about the surgery you had BUT I was wondering..I have inflammation at the vaginal opening that will not go away. Do you think this surgery would help this? I hope you get 100% recovery from this. My heart goes out to all the women who suffer this horrible illness..I get soooooooooooo tired of looking for answers..EVERYDAY!
CommentHi Laura - I hope you are starting to feel less pain and a little better with each day. Are you still taking the pain meds? I can't even imagine how painful it must be down there but it will be sure worth it if you will be cured and I say a prayer every night for you. I have a few questions if you are up to answering them. Had the surgeon done a vestibulectomy before? If he had previously performed such surgeries did he give you any idea as to what his percentage of success was? When you are all better will you be able to have sex again? ( I am sure that is the last thing on your mind right now). Since I am seriously contemplating surgery would you mind telling what State your hospital is in. I am in the Chicagoland area and we have a lot of fine hospitals here. I mentioned it to a few doctors and none of them encouraged it. I am convinced that doctors don't want us to get better. I have read that some women that had it done said it was the best thing they ever did. I pray that you will be posting and telling us the same thing a few weeks from now. God Bless!
CommentMonica - My doctor is a pelvic pain specialist and uses the surgery as a last resort when all the other primary treatments for vulvodynia fail. He has done the vestibulectomys before and he has a 80% sucess rate. Pretty much anyone that fine that specilizes in this surgery its knows to have 80% success rate over all. My doctor said there are really not a lot of docotrs that do a lot of these surerys. The only one I know of that does a lot is Dr. Goldstein he has and office in New york and one in washingtion DC. My doctor say its a fairly simle procedure to do it takes about 20 minutes. He says I should be able to go back work in 2 weeks. As for sex I am not sure when I will be able to have sex again. Some womans have to dilotors before attempting interouse after surgery. But I think sex it possible after surgery. I have my first follow up appointment tomorrow and should know more. I am week out of surgery and every day I get a little better. I am almost off my pain meds. I use a lot ice diapers and take stiz bath with salt water and tea. Sitting and walking are still limited. Shelia- I had burning pain with touch and pressure around the vagainl opening I would think it could help inflamination...Monica- is your pain just around the vaginal opening?
CommentSorry fo the typos! Monica- I had my surgery done in Michigan by Dr. Eisentein. He works with Dr. Hope Halfner who is a well know specialist for vulvar pain in my area. I have heard the NVA has a list of docs that preform the surgery. But you have to make sure you are a canadiate for surgery a specialist should be able to tell you. Your pain MUST be locialized around the vagainl opening. If you have genealized vulvodynia meaning you have a pain on the vulva or around urethera area the success rate is lower with those cases do to the fact a vestbulectomy only removes skin around the vagainl opening.
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CommentHi ladies. I suffered with this condition for three years. I feel for everyone, I know how awful it is. I cannot tell you how many tears I shed over it. Anyway, in December of last year after struggling with doctors I found a holistic doctor who helped me. I ph balanced all my water, quit coffee and tea (forever) added huge portions of greens with all my meals, bought a juicer and juiced my greens, and took a regimen of herbs. I used to burn 3 weeks a month. It was awful. I saw specialists gyns, etc. It took me months on this, but I improved, and the last few cycles I have not had any burning. I know all of our conditions are different, but I wanted to share what worked for me. Oh, and she made me stop all meds I was on (she says they make your body acidic). God bless. I am praying for all of us.
CommentHello, I have suffered for almost 4 years. I tried a lot of medications and some of the (supposed!!) best specialists in the country. Nothing has helped. I can't take it anymore, really. As a last resport I want to try alternative treatments. Can anyone recommend a good acupuncturist or alternative doctor in the Dallas area? Thank you.
CommentHi Everyone! I am a 30 year old woman who was diagnosed this year with vulvodynia and vaginismus. I have read the posts on this site until my eyes crossed. It is a Godsend. I've struggled with the burning vulva on and off for as long as I can remember, but the constant burning, nagging pain just started last year. My story is similar to everyone else's-- thought it was yeast, treated for yeast, nothing helped, doctors looked at me with confused pity, fell into depression, went to acupuncture, tried lidocaine-- whew! The list just goes on and on. I finally remembered a doctor telling me about 10 years ago that she thought I had vulvodynia. At the time I'd never heard of this and nobody else had either so I dismissed it. So I began researching this mystery condition and went to a new doctor with my self-made diagnosis. Luckily, she confirmed it and send me to a physical therapist for the vulvodynia and vaginismus. So, I always thought I'd be a secret site reader, but I'm just feeling so lost again. I'm wondering if anyone who reads this has a moment to share a success story-- partial or whole. My doctors and I are having trouble figuring out the root of the problem, thus treatment is elusive. The burning is so intense and I just feel so alone and lost. Luckily my family, boyfriend, and friends are supportive, but they can't truly understand the emotional and physical pain I'm in. Do you know what I mean? I went on the yeast diet for two months-- no sugar, no cheese, no wheat, etc.-- and then this weekend I was in pain and just went a little sugar nuts. I'm trying to get back on the wagon... and if I just had a little hope to work towards I think I can keep going. I am so so sorry for all of the women who've dealt with this for years! I just don't know if I could make it. It has taken over my life and now I'm trying to reclaim my life back! If you are still reading-- one more thing! I'm on 600 mg of gabapentin. Does anyone else take gabapentin? How many milligrams do you take? I was accidentally taking the wrong dose (900 mg) due to a mis-communication with my doctor and felt so loopy. I like this dosage better, but I want whatever will make the pain go away! :)
CommentElizabeth, I just wanted to tell you and the other ladies not to give up hope. When this all started, I had burning 24/7 as well as urinary urgency, dryness, stinging, etc. I've come a long way since then. After a vulvar biopsy, I was diagnosed with Lichen Sclerosis and prescribed Testosterone ointment to apply to my vulva. After using the ointment for many years, I saw a vulvar pain specialist who told me I either never had L.S. or it was now in remission. He had me stop using the Testosterone ointment and use Estrace cream topically instead. I apply a pea sized amount twice daily, use Clobetasol ointment once a week to keep the L.S. at bay, use Emu oil as needed for dryness, burning, irritation. I also have Acupuncture once weekly. I believe that the Estrace cream and Clobetasol steroid ointment have helped me the most. I've never tried Neurontin. I do take Prozac for anxiety and/or depression though. Intercourse causes such pain so I go through a whole ritual of taking a warm bath afterwards, using ice, and putting some of the steroid ointment on. That way I don't suffer for weeks or months at a time. I hope you find something that works for you.
CommentI am currently taking neurotin as well as applying a compounded topical ointment with estrace and lidocaine. I am going to be working my way up dosages with the neurotin. My doctor started me on 300mg and I have a schedule that I will gradualy work my way up to 1200 or something like that. I've been on the 300mg for 3 days now along with the topical ointment I mentioned and I do NOT have nearly the burning during my daily functioning as i normaly did. I have exzema or dry skin since I was a baby and creams made me break out horribly and always burned my skin and it's the same thing with creams on my vulva so try ointment if creams are not working. Just a suggestion since it's worked better for me. I work out alot and am walking and I do NOT have that burning nearly like I did. I also ice my vulva with an ice pack because if they are really nerves flaring up down there then I think ice will help but who know. I use a cold water bottle when I urinate because I think my urine is very acidic and that helps. I have the vestibule vulvodynia so my pain is at the 6:00 entrance as well as goes up the sides and very slightly inside of my vaginal opening. I am positve for now and eventualy I will try intercourse but that's what scares me the most. I am with someone who is very supportive for four years now and I have not been able to enter my vaginal area for about 6 months but am just now starting treatment because I had know idea what this was until I found help. Has anyone found relief from acupunture or I've heard even chiropractors have been helpful. I'm willing to try it. Gotta try it all till we figure out how to help relieve and control the pain. I've never been on treatment until now so I am positive to see results and manage me pain. For now I am positive I guess: ) Please feel free to email me. Oh, and I have no side effects on neurotin either. I've heard a few people that were concerned because it says confusion or dizzyness. I am fine on it thus far.
CommentI have been helped so much by site members with my V burning. I was diag. with LS about 2 years ago and now I have that pretty much under control. Now I have this burning pain about 3 " to the right of my V. My family Dr. perscribed neurotin 100 mg for1 week next week 200mg and the following (3rd) week 300 mg. She said that because of the LS inflamation my nerve endings around the V and near my Buttocks r inflamed. Does anyone have this problem and if anyone has used neurotin how long does it take to work. Thanks in advance for anyone's response
CommentCan anyone give any insight on acupuncture?
CommentHi Sarah, Concerning acupuncture, I think not all women will react the same to acupuncture. I tried it and felt instant relief while the needles were in but the pain would come back the next day or the day after.Only the constant burning pain would go away. Acupuncturists say that the longer you have the condition, the longer it takes for it to leave. I went once to twice a week around thirty times and then stopped because it was getting a little $. It may work for you but you won't know unless you try it. Another thing I suggest is to find an acupuncturist with a lot of experience. I hope this helps you. Take care
CommentQuestion about relieving c pain Hello, I was wondering if anyone knows a natural way to relieve excrutiating cl. pain. I have been having a really bad episode for the past three weeks now. My pt gave me exercises but they aren't really helping. My doctor wants to put me on neurontin but I want to have a baby... So please please ladies if you have any idea of something that could help, let me know. Getting pregnant with this scares me a little.. Thanks ladies
CommentHi all, I've read the board before, but haven't posted. Was diagnosed with vulvodynia by a dermatologist I went to when my gynecologist was at a loss. Like most if not all of you, I tested negative for STDs, Yeast infection, bacterial infection, and also had a biopsy done of the skin near the vaginal opening. It was reviewed twice, by two different pathologists, and showed nothing. My main symptoms are redness and burning. It burns ALL the time. Creams offer only slight relief and usually just make it worse. On the suggestion of someone on another forum, I just bought some natural, dye-free soaps, and will switch to a dye free detergent again. Any suggestions on soap or laundry soaps? Anything helped your redness or burning? What about seat cushions? Have any of you tried the type designed for low back pain/U-shaped cushions? Did it help? Also, I've suffered with low back pain/stiffness for several years..could it be related? This all began a year and a half ago with a new boyfriend. He and I are still together. We fooled around in his hot tub, and the very next day, I felt strange...almost like a bladder infection was coming on. I'd only had 2 bladder infections in my life, and these were years ago. I used OTC yeast infection stuff (Although I had never had a yeast infection before) In case that was it. When it didn't help, and the redness, irritation and burning continued, I saw my gynecologist. She did swabs and an exam..found no discharge or odor. Pending results, she put me on Diflucan. More than once. No relief. I tested negative for HPV and other STDs, and had a normal pap smear result as well. I went to the dermatologist after more pointless trips to my gynecologist who put me on Elavil tablets. It reduced the burning, but caused something like numbing in my crotch area which didn't help my flagging sex life. It also made me a drowsy zombie, and I gained 15 pounds, which I have only recently lost. I'm vain...getting fat from a medication is NOT cool. I have been on: Neurontin, Elavil, 2 different steroid creams, Cymbalta, and Lexapro so far. Currently, I am off all medications, and even stopped taking birth control pills around four months ago because I suspected it was making things worse. I plan to try and see a gynecologist specializing in this thing, and live in Southern California if anyone can suggest someone. I am 32, and this all began after the hot tub incident. No history of yeast infections, bacterial vaginosis, or STDs. Have never given birth. It has to be *something* right? Vulvodynia is just a long word for "I have no clue why your crotch is on fire" in my opinion. Clearly, to go all your life without ANY problems, only to end up with this chronic, constant thing...SOMETHING is wrong, and they just can't find it? Sorry..I just feel like screaming today. Rachel
CommentHello, can anyone tell me if they had weight gain on Neurotin only. I am on 200mg. now and have not had any side effects. I am mostly concerned with weight gain. Thanks
CommentThank you who ever responded about acupuncture. Do you think the pain helped significantly with intercourse those days for you if you were having it or just burning?
CommentHi Sarah, I think my v pain changed over the past 3 years and at that time (2 years ago) it helped the constant burning but not pain with intercourse. Three months ago I started taking pure magnesium citrate twice a day and a mix of potassium, magnesium and calcium in powder form three times a day and low and behold, almost pain free in the v area. MY pain has changed though and has moved to an even more unpleasant place... Sometimes I feel as though I can't win....
CommentSo you actualy are now capable of having intercourse and feel almost pain free now with that combination? I bought some calcium citrate today with vitamin D in it. I'm hoping that will help along with working my way up to a high dosage of neurotin. I bought some calendula ointment today and that has helped with the burning too but my pain is usualy always there but if I keep up with things I can lose the burning. No intercourse though and that is what scares me most b/c commiting to someone scares me and it's time to do that but I just don't know: (
CommentForgot to mention...Sorry about your pain moving but if you can have intercourse I guess that a plus. I don't understand how this vulvodynia can cause so many other pains or move like that. I wish I could make it better for everyone honestly. It all seems so unfair
CommentHI, Yes I feel no more pain there really, not even during intercourse. My pain is elsewhere now, kind of close to there but worse than in the v area. I went to see a chiropractor / osteopath a while back, he told me that I had signs of acidity (a cold sore and tenderness in the inner thigh area)... I had read about supplements helping to reduce the acidity in the body (my diet is good but I don't eat 80% greens) and so any time I felt burning there, I would take the powder. At first I took 6 magnesium caplets a day but now I'm down to two, three is ideal for me. I also wanted to mention that there are better brands than others out there for pure magnesium calcium and potassium. In the past I tried different magnesium caplets or liquids from the health food store that made me really tired but once I got just magnesium, it really worked for me. The ideal mineral mix has manganese in it too and another mineral that you could read about in a book on acidity that I forget... For me magnesium is the key, it relaxes the muscles and soft tissues. Unfortunately for me, I have developed pain in the c area and it is intense. Nothing seems to help that. I keep taking the supplements. At least I have no pain in the other place. I have been taking the supplements for over three months. This might not work for everyone but it helps me. Now if only I could figure out what to do to take care of the other pain I have without taking meds.... Take care
CommentI forgot to tell you, my c pain is worse with intercourse. It usually starts to hurt After intercourse but for the past three weeks I have been in pain there all the time and that is why I feel like I am personally back at square one... I wonder if anyone else out there is going throught the same thing as me... The doctor wants me to try neurontin but I want to get pregnant... The pain scares me though... not pregnant yet + nine months of pain is frightening. I hope I will be strong enough.... Sorry for pouring my heart out, Thanks for listening.
CommentI can’t imagine having it in the c area and worse. Thank you for giving me some hope towards my healing journey. Hmm…I wonder if I ought to give your combination a try. Can you tell me what brand you use for your vitamins as well as how many mg of each? Like I said…I’m taking 1200mg of calcium citrate + vitamin D 800mg. I started that today. I’m going to look into magnesium. You can pour your heart to me anytime…I feel as though I am in the same boat as you. This condition is emotional. Have you ever tried calendula ointment? You can get it at whole foods. It helps with healing, scrapes, burns..etc? It’s been helping me to make it through my days without intense burning. I really feel for all of us. Email me if you would like to talk private! Again, thank you for giving me some hope: ) and you’re in my prayers to heal. Everyone of us women is every night.
CommentHello Sarah, The magnesium citrate I take is Metabolic Maintenance. It has 500 mg of magnesium per capsule and thirty mg of vitamin c. I was told to start off by taking 6 per day, 2 thirty minutes after every meal (three meals a day) 6 was too much for me so now I take 2 caplets a day one in the morning and one at night. If I take one in the afternoon (making it three caplets a day) I feel almost normal again (v pain wise) but, I can't do that on busy days. The other thing I take is Ecological formulas tri-salts two to three times a day sometimes with the magnesium, sometimes without. half a teaspoon has 450 mg of calcium carbonate, 250 mg of magnesium carbonate, and 99 mg of potassium.bicarbonate. I think you could probably get those on line. I'm sure other brands are as good, I'm just a really sensitive person and I seem to have a lot of sensitivities to supplements. Last night I had one whole teaspoon before going to bed and my very frustrating pain is better this morning. Stress really seems to make my pain worse. Don't worry about taking too much calcium or magnesium, your body will eliminate what it doesn't need. I'm glad the calendula cream works for you. For me on some days it helps and other days it burns.... Thank you for your kindness. You are in my thoughts too as well as everyone else. Have a wonderful day.
CommentI forgot to mention, if I don't take the supplements, the pain comes back, if I feel burning there, the supplements make it calm down. I don't think it makes my pain go away, I think it helps to control it.....
CommentI’m going to go get some of the magnesium citrate. Like I said..I’m already taking calcium citrate + vitamin D and I think I will add the magnesium citrate. After taking calcium citrate + vitamin D along with the calendula ointment and neurotin I am feeling 50% relief. This is very exciting for me to say the least. I’ll get the 500mg of magnesium citrate! I think some of my pain relief is b/c I tell my urine is not as acidic and doesn’t burn as much after urinating. I am trying to drink a lot of water and that is also probably helping. I’m doing my best to stay CLEAR from the high oxalate foods. So..I think I will try to take one of each..1 magnesium citrate and 1 calcium citrate in the morning and night along with all my other things: ) I’ll add on an afternoon if needed but want to try that system first. I’ll keep the ecological formulas in mind if all else fails. I agree that stress makes pain worse so I’m trying to stay positive and not give up on this battle until everything fails and I’ve tried it ALL : ) Yes..the calendula ointment is wonders for me thus far. THANK YOU so much for all of your information and sharing your experience with me. I’ll keep praying for you. Thanks for being so quick to reply. You have kept my motivated.
CommentHello ladies, Anyone here living in or close to Ottawa Canada who know of anyone who treats vulvodynia? Do you know any good alternative medicine practicioners who treat this condition? Thank You
CommentTO LADY WHO POSTED TO SARAH - This is my first time posting although I read the posts almost every day. I have already been helped so much over the last 10 years and have seen more drs. than I care to remember and each dr. gives me a different med and none of them has helped very much if at all. I was very interested in your post to Sarah. I take supplements and vitamins but not the ones that help you. I don't know much about Metabolic and Ecological. I would be so appreciative if you would post a list of exactly what my husband can ask for when he goes to the health store. I can't even drive anymore because of this darn problem. I hope I am not asking too much but my husband and I are huge believers in alternative options to health problems and a list of exactly what I need would be so helpful so until then God Bless.
CommentHi Cheri, Here's what I would ask for: one: A good probiotic, I take trophic but there are lots of other good ones out there. two; a powdered mix of calcium carbonate (approx 450 mg per serving), magnesium carbonate (approx 250 mg per serving) and potassium (99 mg) *Any alkalizing formula will do. three. Magnesium citrate caplets. one hunderd fifty to 500 mg per serving. This will help your muscles to relax... There are lots of alkalizing products out there. Another I know of is erbacit. I personally don't take this because I am sensitive to whey (an ingredient in the powder)but it really helps to take the pain away. I guess it's equivalent to having heartburn and taking tums.... It relieves the symptoms of heartburn..... Alkalizing products do the same thing for my v. Any health food store person will be able to help your husband find something alkalizing if they don't have the tri-salts. If he tells them that he wants a powder that will alkalize... (there are even drops) they will know what to recommend. Also anted to mention that the Tri salts are a third of the price of erbacit. There are less minerals in the tri salts but in my opinion it is just as effective. I really hope this helps you Cheri, another thing that might help is physiotherapy, that along with the supplements really helps me. Also, I just wanted to let you know that I eat a gluten free diet, try to limit the amount of sugar I eat and feel better when I eat lots of greens.... I really hopes this info helps you... Take care
CommentTo KAT (from October 2009), My vulvodynia was caused by low B12 and zinc levels. Very rapid cure in my case as solution was simple. I had other related symptoms by the end too (burning mouth, a red foot...).
CommentTO NICE LADY WHO RESPONDED TO ME: Thank you so VERY VERY much for responding to my post so fast. My husband is going to the health store in the morning. He is so supportive but I have to give him a list of what I need and even at that he calls me several times from a store. He is afraid if he brings home the wrong thing I will be mad at him. We have been married for 40 yrs. so I guess something works. Thanks again and I will post and let everyone know how it works for me. Lots of love!
CommentHello all- I have recently been diagnosed with vulvodynia. From my symptoms (redness originating at 5 and 7 o'clock), I have deduced that I probably have vestibulitis. My doctor has started to treat me with amitryptiline and 5% lidocaine. He also referred me to Dr. Andrew Goldstein. After calling his office, I am very hesitant to make an appointment. He has contributed a lot to the body of research on this topic, but does not accept insurance and charges a hefty $1300 for a first appointment. Seems like a bit much for my first stop, especially since I seem to be improving on my current course of treatment (reduced pain while sitting, but still can't have intecourse). So, I did my own research and found that Dr. Hamod in Lutherville, MD does accept my insurance and also treats these conditions. My questions are: 1) have any of you ladies had any experiences, positive or negative with these doctors? and 2) do you find that going to doctors even helps? I feel as though I've read a billion journal articles and have heard about all of the treatments currently available. I know that sounds brash, but honestly, what else is there to do? In addition to what I'm already doing I can stop birth control, try estrace, change my diet, swallow calcium citrate, wear granny panties, and failing these get nerve blocks or surgery. Anything I'm missing?
CommentTo B- I was just talking to my PT today about which doctors they see their patients get the most success with. Although Dr. Goldstein is good, they recommend Dr. Richard Marvel at GBMC in Towson, MD. He is just as good; the only difference is that he accepts insurance. Have heard mixed reviews about Dr. Hamod. My other recommendations would be to see a good PT who deals with women's issues only (there are two outstanding practices in Maryland that I am aware of) and to see a good naturopathic doctor who can balance the body and get rid of any underlying issues.
CommentTo S- Thanks for the recommendation! I have an appointment with Dr. Hamod in September, but will definitely see if Dr. Marvel has any available in the next few months. Do you mind me asking who your PT is (if he/she is in the DC/MD/VA area)? Does PT help vestibulitis patients? My skin is so red, its hard to believe that the underlying issues are potentially nerve-related. I keep thinking I am going to wake up and find the right cream or pill to fix the issue... it seems so unreal that I may feel this way for the long haul.
CommentTo S- Thanks for the recommendation! I have an appointment with Dr. Hamod in September, but will definitely see if Dr. Marvel has any available in the next few months. Do you mind me asking who your PT is (if he/she is in the DC/MD/VA area)? Does PT help vestibulitis patients? My skin is so red, its hard to believe that the underlying issues are potentially nerve-related. I keep thinking I am going to wake up and find the right cream or pill to fix the issue... it seems so unreal that I may feel this way for the long haul.
CommentHello, can anyone tell me if they use Neurotin??And if so how much and if they had any side effects from it. THANKS
CommentHello, can anyone tell me if they use Neurotin??And if so how much and if they had any side effects from it. THANKS
CommentB- Please e-mail me at iscribeinc@gmail.com for PT info, and I really think you need to see a naturopathic doctor as it sounds like you have yeast deep in your vulvar tissues that medicine isn't going to touch or perhaps even make worse. S-
CommentHi ladies i wanted to let you know i made a website for vulvodynia here is is http://vulvodyniasupport.weebly.com/index.html
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CommentI was treated for bacterial vaginosis and yeast infection for six months, even though my cultures always came back negative. My ob / gyn did not know what else could be causing the pain and irritation. Finally after seeing three doctors, I was diagnosed with vulvodynia. Around the same time, I was reading about pinworms in my search for an answer. My rear-end was sore and itching along with the vaginal discomfort, so I decided to watch for signs of pinworms. Sure enough, the second morning I looked for them, I was both horrified and relieved to find two small moving worms. I was treated for pinworms (mebendazole) as well as for vulvodynia (50 mgs. of amatryptaline). I want to share this story, because it seems that doctors don't look for pinworms as a cause of vulvodynia. Apparently they live in the rectum but can wander into the vagina, as well (yuck!) Now it has been six months since I was treated for pinworms, and my vulvodynia symptons are almost completely gone. The discomfort did not subside immediately, and my ob / gyn thinks it's because that area got so irritated and hyper-sensitive that it is just taking a while for the nerves and skin to calm down. I hope this helps others who are looking for answers. Pinworms may be to blame!
CommentHi, I wanted to know if anyone else beside Sarah takes neurotin. Thanks
CommentI am a bartholin cyst sufferer. I also have chronic pain (mainly burning sensation) on my labia, clitoris ... I often feel like I am getting UTIs but the results come back negative. I am considering a low alkaline diet HOWEVER, I am also considering a low oxalate diet. The problem is that many foods in these diets conflict. Does anyone have any feedback on whether or not either type of diet decreases burning sensations and pain? Thanks!
CommentAs a follow up, I did find this: http://oxalicacidinfo.com/ seems that the oxalic acid combines with magnesium & calcium to form the oxalate crystal.
CommentHello Rebecca and all others, If you are wondering whether oxalates is a problem, you can always do a 24 hour urine test. A homeopath may be more inclined to this but doctors can also request this test. They send your urine to the lab and test it for oxalates. The idea is that if you have a lot of oxalates in your urine, you have a problem with oxalates.
CommentHi Everyone! My name is Karen, I am 59, married, I have two children (now men) and I have had vulva vestibulitis for more than 5 years. I have seen 19 health care professional...some helpful, some not so much. I am waiting for a cure.
CommentHI, Just wondering if anyone with vulvodynia has taken accutane? If so do you know of any connection between the effects of accutane and damage to the liver or reproductive system/hormones that can cause vestibulitis/vulvodynia? I was diagnosed with vestibulitis 5 years ago and have so far tried pelvic floor rehab physio (totally ineffective for me), estrogen cream ( little to no help), xylocaine ( temporary relief but extremely painful to apply), nortryptaline ( helped for 3 years), and am now on BCP's and Gabapentin/Neurontin (helps about 80% of the time). I have also had 3 surgeries related to Uterine Fibroids and Endometriosis. Any responses would be appreciated! Good luck and best wishes to you all:)
CommentHI, Just wondering if anyone with vulvodynia has taken accutane? If so do you know of any connection between the effects of accutane and damage to the liver or reproductive system/hormones that can cause vestibulitis/vulvodynia? I was diagnosed with vestibulitis 5 years ago and have so far tried pelvic floor rehab physio (totally ineffective for me), estrogen cream ( little to no help), xylocaine ( temporary relief but extremely painful to apply), nortryptaline ( helped for 3 years), and am now on BCP's and Gabapentin/Neurontin (helps about 80% of the time). I have also had 3 surgeries related to Uterine Fibroids and Endometriosis. Any responses would be appreciated! Good luck and best wishes to you all:)
CommentI had vulvodynia and interstitial cystitis. I also have experienced tingling and numbing of my right arm (from the elbow down to the hand) when my symptoms of vulvodynia and/or cystitis have occurred. I have noticed the symptoms come on when I'm trying to manage stress. The thing that has worked for me: I have to temporarily stop eating banannas (postassium) I have to take a 1/2 teaspoon of baking soda in the morning and night (this gets rid of my yeast). I have to temporarily stop taking vitamin B6 I have to temporarily stop eating whole grains I have to temporarily stop eating turkey Doing these things have consistently cleared my symptoms up in a few days. I introduce things back slowly and after the stress has let up. Hope this information helps someone else. Best of luck.
CommentRaphaelle- I have taken accutane when I was in my teens I am now thrity. Not sure if there any connection they a lot of side effects that can my caused by accutane. I think there needs to be more research. I have had vulvodynia vestibules for 2 years I have recently had vestibulectomy. Most of my pain was around the vaginal opening. I am now 2 months post op and burning around the vaginal opening seems to be gone! However I am still healing so I still have incision pain in that area. Also after surgery I started having pain inside my urethra and some urgency. I was tested for a UTI but the doctor thinks it more muscler from surgery. I guess the pain from and trama from the surgery caused my muscles to be tight and we have give them time to heal.. He says I don't have pelvic floor dysfunction so I am a interesting case. A normal response to when we have pain down there we tense up our muscles which in term cause pain. We tried having sex around 6 weeks post op and it was worse them before surgery! I had deeper pain in the vaginal wall we only did it like 10 seconds I had to stop. For 2 days after I had EXTREMLY painful spasms in my rectum. Thank god they only lasted a few days.. Before surgery I only have pain with sex around the vaginal opening. My doc will see me in a month and if things don't get better he will send me back to PT. I have done 7 months of PT prior to surgery and it did help some. Other them PT not sure where to go from here. I have tried everything to treat this disease and I did not get much relief. I have tried drugs, creams, valium suppoitories, botox injections, compounds etc.... I guess time will tell if I will fully heal from the trauma from surgery or not. Well thats my post surgery update as promised....
CommentTO LADY WHO RESPONDED TO ME ABOUT SUPPLEMENTS, Hi, I hope you can help me once again. I have been taking a probiotic, magnesium citrate (which helps big time with my constipation) and tri-salts. I was wondering if you know more about tri-salts. I am on high blood pressure medication and I know that people with this problem are told to watch their salt intake. The ingredients on the tri-salts says there is no sodium in it. Do I have anything to worry about? No use asking my dr. She doesn't even know what tri-salts are. Also there has been a lot on the news recently about too much calcium. It causes hardening of the arteries. It is hard to believe anything you see on TV anymore. One day its great for you and the next it is killing you. I know you are not a dr. but I would just like your opinion on this. Also, do you take them everyday and how long have you been taking them. Do they really help your V pain. Thanks again.
CommentI wish magnesium would relieve my constipation. I've stopped taking calcium supplements as they also cause constipation and they never made a difference with my Vulvodynia. Heart disease runs in my family. I get calcium in my diet.
CommentHi Cheri, Apart from regularity, have you noticed any relief from burning after taking these supplements? Don't worry about the tri salts having sodium in it, the three ingredients in it are potassium, magnesium and calcium. If there were sodium in it you would definitely see it listed on the label. I am not a doctor but I don't think taking too much calcium is harmful if you listen to your body. If you take too much calcium and magnesium, you will get the runs and that will give you a clue as to whether you need to take less. Yes I do believe that the calcium and magnesium helps to take the burning away... I also believe that taking the supplements helps to control the burning, I sometimes think that one reason for the burning is due to our bodies being too acidic. Stress eats away at our calcium and magnesium reserves. You can read about it here: http://www.guidetostressmanagement.com/articles/natural-enemy-of-calcium-magnesium-zinc.html Usually I take three quarters of a teaspoon of trisalts and one magnesium caplet after eating in the morning and same thing at night except I take it before going to bed. On bad burning days I take a whole spoonful of tri-salts and I will take the supplements three times a day instead of 2. The only downside which is not a downside for me is that I may be very regular that day but at least it makes the burning go away. A goal of mine is to get pregnant so that is one of the main reasons why I would rather take calcium and magnesium. My doctor told me that taking that during pregnancy is safe. Also I am a very sensitive individual and don't react very well to many meds, homeopathic remedies and herbs... On another note I am not pain free or cured from vulvodynia but I have been having some pain free days lately. I also wanted to mention that I do other things to help myself cope with vulvodynia such as: doing yoga at least three times a week trying to be more positive getting chinese cupping on my back taking chinese herbs that I get from an acupuncturist I try to limit the amount of sugar I eat Fruit juices are a no no for me I try to drink as much water as I can I try to eat as many vegetables as I can I do physical therapy on bad days I don't eat gluten I don't eat any corn I remind myself that flares will pass when I'm having a bad pain flare I talk to a specialist about my pain If I feel pain, I won't let that stop me from getting out of the house.... I find that doing things.... Anything seems to make the pain disappear for a while... I also wanted to share that something that really helps me to relax my butt muscles and leg muscles is chinese cupping. I hope that the supplements help you with your pain... If not there is something else out there that will... Don't give up and keep looking. Big hugs, the calcium / magnesium lady
CommentHi Cheri, I forgot to mention... I just wanted to let you know that I have been taking the supplements for the past four months... If I'm in pain I know the supplements work because I feel way better by the end of the day after having taken the supplements three times that day. (One teaspoon of tri-salts + one magnesium caplet three x a day) I hope this helps you figure out whether the calcium + magnesium will be helpful for you.
CommentAll of you Ladies, I felt your pain, but I am recovering... PLEASE SEE A WOMEN'S HEALTH PHYSICAL THERAPIST, FOR MANY OF U THE CONDITION IS HIGHLY TREATABLE, BIO-FEEDBACK IS HIGHLY SUCCESSFUL IN TREATING VULVODYNIA, VULVOVESTIBULAR DISORDER AND VAGINISMIS... the reason we suffered for so long is b/c most doctors are unfamiliar with these disorders and don't know what there doing.
CommentDoes anyone feel that medication has truely helped their actual nerve pain? I am having the small side affects and am half way through the dose that I need to be at. It seems like such a high dose of medication to work up to. Has anyone continued to take their meds and feel that when they finaly got up to the "needed" dose it has helped them? I'm debating if it's worth continuing since I do feel a slight almost "tipsy" feeling at this point but if it helps I'm sure I can continue to get use to it and continue going slow and make it up to the suggested dose? I dunno..any advise would be great!? Thanks.
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CommentIn response to your question regarding medication, I just saw a new doctor who put me on Lyrica for pudendal neuralgia. I have been slowly tapering up my dose to 150 mg. I am currently at 100 mg, and for the past two days, this is the best I have ever felt in the past 4½ years. In addition, I am on a clindamycin/hydrocortisone cream that is in a syringe that I inject vaginally every night for inflammatory vaginitis and cytolytic vaginosis. For the past 4+ years, I have been treated for yeast with antifungals when all along, although my problem was initially yeast, but with overtreatment of this, I developed too much good bacteria that has the same symptoms as yeast. Why all the other doctors never picked up on this, I don't know, and I have seen some of the very best doctors on the East Coast. Also, for the nerve pain, I sit on a 2" U-shaped foam cushion so as not to put direct pressure on the nerve, although I try to avoid sitting as much as possible. I have a cushion at home, in the car, and at work. I currently see Dr. Richard Marvel at GBMC in Baltimore, MD. My first exam was 2½ hours long. He has a camera that he inserts vaginally that shows up on a television screen. He showed me all the inflammation (blood vessels at the surface). I could see all the discharge, all the vaginal folds and nooks and crannies. He then examined the vaginal secretions under the microscope, and I could see what he was seeing, but I saw it on a computer screen--way too many lactobacilli and white blood cells. I was very skeptical of his treatment plan as so many other doctors would get my hopes up but the pain never went away. With Dr. Marvel, I was cautiously optimistic, but as I stated above, for the past two days I have felt great, so I truly believe I am on the right path. When I first started the Lyrica, I was slightly lightheaded for the first two days. The only other side effect, which I don't consider bad at all, is that I have increased energy. I have to take my med earlier in the evening so that I can fall asleep. I was afraid it was going to have the opposite effect as so many other meds make people tired, but not this one...I just go, go, go...feel like the Energizer Bunny. I also noticed that as an additional benefit, it has helped with some anxiety issues I was having, which are much less on this med. Lyrica so far has been a miracle drug for me!!!
CommentThanks for sharing. I almost feel as if I did better on the lower doses anyways so I am going to slowly go back down. It is not worth the side affects I've started feeling. I take 1800mg a day and I was slowly going up and it's time to get back down. It's too much now. So happy lyrica is working for you. Energy is always good : ) And your anxiety it helps with too..that's wonderful! It sounds like you have found the right medication for you.
CommentI just started using neurotin for nerve pain...has anyone evertried it...and if so what kind of results.. Thanks
CommentHey Mary, I am currently taking neurotin. I think it is a good option to try since it wont put weight on and many of the other options do. I seemed to do better on a lower amount for some reason. I did wonderful on it at first until. I was feeling very positive and there were times I felt..maybe I could attempt intercourse and had a little pain. I have some side effects from the medicine now but am seeing if they last since I gradualy am going up and am just hitting the "high" dosages..My doctors thinks that the higher the better..you probably have been advised to do the same thing?? I've been more stressed lately then usual and I know stress plays a big role so maybe that's why I have been in more pain then usual..I am trying to eat better..stay away from sugar..yeast..and some of the high oxalate foods that I use to eat prior to being diagnosed...I have not been strict on those things and need to do better. I'm not completely better but I do think it's taken the edge off my daily pain but my back pain is completely gone so maybe I just need to stick to it and I will soon see results. I didn't think anything could take my back pain away and this HAS and it's a nerve problem. It would be great to know how you do on it. Email me if you want to talk more detailed.
CommentHi ladies. I am so sorry to see so many women are still suffering with vulvodynia here. I started posting here 9 years ago and finally for the last 2 years have been so great. I took all the drugs and used all the creams and had biopsies of my vulva, i did it all. I found a doctor that did a vaginal smear and tested for everything including superbugs and she had my urine tested. Turns out I have uric acid, which is crystals in the urine that causes gout. I now see a nephrologist, a kidney specialist. These uric acid crystals come out in the urine and this touches my vulva. I now have to drink 2 to 2.5 liters of water every single day to dilute this. I have had gout 2 times and it hurts like the devil. I also recently had my vitamin d and B-12 levels tested and was slightly low in b-12 and frightening low in vitamin D. I have a normal life again. this past week i ended up with a flare, red vulva with swelling. The first thing my husband asked was how much water i drank. In 2 days I had drank 3 cups of water and a ton of coffee. I ws so busy I just forgot to drink, as i dont ever feel thirsty i didnt think about it at all. i started downing the water and within 2 days I was back to normal. Like i said, i suffered for 9 years and all it took was water, water, water. I do not use anything on my vulva at all. I also have noticed if I put lotion on my dry legs i get burning and swellling. When you pull down your pants, it rubs the legs and then that lotion touches you down there when you pull your pants back up, i never thought about this before. I also can not eat wheat.I felt worse after eating raisin bran and sandwiches. So i cut out wheat, drink a ton of water, and use coconut oil in place of lotion. I use scott toilet paper and use only dove dye free scent free soap and dye free scent free laundry detergent and wash my hair leaning forward in the shower since i have become obsessed with nothing touching my vulva over the years. I wear pants daily and can have sex again. Water seems to be a huge issue. I would suggest you all go and get your urine tested by a lab for anything at all that is abnormal. Vitamin D deficiencies are also at an all time high in this country. To the girl with the clitoral pain, i had something like that earlier this year. it was a first and it was awful. At the same time i had a terrible pain in my inner thigh and lower back. I went to my osteopath and embarrassingly told him about my clitoral pain. He adjusted me and gave me a steriod pill to take for 11 days and then i was fine. We believe i had a pinched nerve and pulled muscle as the muscle in my thigh ran into the pelvic area and where my back was hurting, there was a nerve ending between those vertebrae that lead to the pelvis as well. If you have acidic urine, or uric acid crystals, you pee and that pee touches your vulva. Water dilutes this. Topical anything on the vulva is sooooo bad. I even quit using lidocaine ointment, which was hard at first as i relied on it, and after a few days i felt better. Stress causes more pain because stress causes more acid in our bodies. I keep a bottleof a low dose xanax in the house for those times, sometimes you need it. Stress causes me to have more uric acid and after having gout twice, i dont ever want it again. So, drink water, water, water. i would bet most of you dont drink near enough.Chlorine in tap water is bad. Filter your water! Check your vitamin d levels and b-12 too and stop putting stuff on your vulvas or near it. like lotion on your legs.
Commentplease remarke my computer
CommentHi there Candi, I'm the girl with the clitoral pain. Thank you for sharing your experience. You're lucky that your chiropractor was able to help you with yours, I think mine got worse while I was seeing a chiropractor to work on the vulvodynia. Luckily things seem to be getting better there due to pt and acupuncture. I totally see how drinking lots of water can help us. On cure together, it's listed as something that helps women with vulvodynia. I'm really happy that is working out for you. I will try to be more vigilant with my water intake. I know I would benefit from drinking more of it. My chiropractor / osteopath told me to drink lots of water because he believed that it would help me. He also told me that drinking lots of water helps to keep depression at bay. Thanks for posting on your progress. It's really encouraging and helpful.
CommentHi Candi, I meant to say you were lucky that an osteopath (not a chiropractor) helped you with your pain....
CommentHas anyone used the dialators from physical therapy and had luck or any remarks for me? I am currently in my second day of PT-bio-feedback and I got started with a dialator yesterday.
CommentHas anyone used the dialators from physical therapy and had luck or any remarks for me? I am currently in my second day of PT-bio-feedback and I got started with a dialator yesterday.
CommentI have been living with vulvodynia for over 12 years now. I just recently got married and I waited until marriage to have sex. My husband new that there may be a chance that sex would be too painful for me but I always hoped it would be do-able. Although I can push through it and have sex it can be very painful. Does anyone have any suggestions on good positions or things I could do to make this a more enjoyable experience???
CommentHi everybody! I havent written anything on this site in awhile..nor read. I am doing ok. I mostly just have burning pain on the butt cheeks that runs down my leg a little. I believe its pudendal nerve pain. I still have some slight vaginal burning off and on. I can NOT do much walking (arobic/fast) for long periods otherwise I have vaginal burning or aching. This whole thing is just so weird..WHY oh WHY isnt there a fix or cure???I take 300 mg lyrica 2 xs a day. I was also taking doxipan 50 mg with no help. Soemtimes i wish doc would put me on neurotin but they all say its the same as neurotin. I hate not being able to sit for long periods. The way it feels is like when you travelo for a lonnnnggg time your butt will burn..I feeel like that at a very SHORT time. It sucks!! I am also using lidocain patchs (one on each butt cheek and one across top of butt crack) this helps alot but i cant use everyday because it will irritate skin. I just called doc and asked for a prescription for the creme or gel so Ill see what happens. ALL OF THIS because I have chronic inflammation at the vaginal opening for NO REASON! I just dont get it. Do we all nhave inflammation? The rest of the V area is fine..its just slight burning or aching at opening..Is there anyone else out there with nerve pain on the cheeks????Thank you all for being there. please feel free to email me. I always welcome new friends :) I hope you all have a wonderful week :)
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CommentTo Guest: I also received dilators to use at home while doing PT. I found them to be helpful. They are not a cure-all, but they will help. Good luck.
CommentHello Everyone, This is my firs post but i have been reading the guestbooks for a couple of months now.On July 20th of this year I had the Novasure procedure done which is where they burn the lning of your uterus to lessen or make your periods go away. Everything was fine for about a week and a half and then one day i awoke with the vaginal burning. The burning was constant and would not subside nomatter what i did. I went back to my gyn and like all of you the treated me for yeast even though they said i had none ...didn't help of couse so i went back again and was given a steroid cream which hurt like hell to apply and also didnt help. The third time i went back my gyn was very rude to me and said I don't know what you want me to do there is nothing wrong with you. I said could i have some sort of nerve damage from surgery and she said no that was impossible and that only people with trauma have nerve issues ...then she looked at me and asked me if i had been raped!!!!! I said no..then she looked at her laptop and said well there is a condition called unknown vulvar pain and since you have no problems i can find but pain i am sure thats what this is right?? I left there with 25mg elavil pills . I started taking the pills and in 2 and a half weeks i was feelingmuch like my old self. I wasn't happy with having to rely on a nerve pill though so i decided to try my family doctor. He also thought it was nerve related and of cours i had dome my research and requested some simple blood tests...folic acid,b-12 , he did a complete blood count,thyroid,and hormone levels.While waiting for the labs to come back he ordered an mri. I went for the mri and it showed a protruding disc and some mild arthritis nothing he said wasnt common for my age..i am 37. I sat at home like most of you and wondered why me and how can i fix this there has to be something i can do. At work i would have trouble walking because of the rubbing of my clothes...come home and have trouble sitting because my butt would hurt so bad...so then the dr. office called me and said guess what your vitamin b-12 is low and you ned to come in for injections and also you need to take a folic acid supplement because that is low too. So i am on weekly b-12 shots and taking supplements of both b-12 and folic acid and i feel back to normal pretty much. I would say i am 90 percent better. No more burning thank god!!!!!!! I also must add that i never had problems with having sex only forplay as my clit was sooo painful and the mons pubis it felt like someone was constantly pulling the hairs and i am a shaver so there were no hairs to pull. Please if you haven't done so get your vitamin levels checked because for me it has been a lifesaver. God bless you all and I hope there is a cure soon!!!!!!
CommentHey all, I have not been having luck with many treatments for vestibulitis, but have found some relief with domeboro sitz baths. Just thought others might find this helpful...
CommentB- Were you the person who was going to see Dr. Hamod or Dr. Marvel? If so, how did you make out at your appointment? Sorry to hear you are not getting much relief. S-
CommentDoes anyone else get sharp pains in their vulva? I had forgotten I use to get those until today when I started getting them again. It's so painful. I took a warm bath and a muscle relaxer. Is there a different medication that stops the spasms? Thanks in advance for any info.
CommentIs there an orthopedic Dr. in Boston area that treats tailbone injuries related to an unstable SI jointand or gives injections to strengthen ligaments tissues for this joint?
CommentSue--yes, I know what it feels like to have sharp pains in the vulva. Have you ever tried Lyrica? It is an anticonvulsant also used to treat neuropathic pain. It has helped me a lot. If that doesn't help you, maybe a mild narcotic may due the trick. After seven years of vulvodynia, I find that a mild narcotic, Darvocet 100mg, helps me when nothing else is working.
CommentSue--yes, I know what it feels like to have sharp pains in the vulva. Have you ever tried Lyrica? It is an anticonvulsant also used to treat neuropathic pain. It has helped me a lot. If that doesn't help you, maybe a mild narcotic may due the trick. After seven years of vulvodynia, I find that a mild narcotic, Darvocet 100mg, helps me when nothing else is working.
CommentCassandra, thanks for responding to my post. I did try Lyrica a few years ago and it didn't help me. Darvocet was just taken off the market, so I won't be taking that one again. lol. I do have some Percocet that I can take. Thankfully, I haven't had any more of those sharp pains since the other day. Most of the time, my pain is bearable, but when I get a flareup I get scared that's it all coming back again. Have a great painfree Thanksgiving. Sue
CommentAfter suffering from severe vulvodynia for 6 years, I finally found a specialist who could really help me. He is Dr Richard Reid in Sydney. I had an operation to remove my Bartholin Glands and a month later started dilator therapy with Marek Jantos. Dilator therapy alone had not worked for me before surgery, but after the painful Bartholin Glands were removed, I could feel the muscles gradually relaxing when I used the dilator twice a day.I was astonished that I could have sex 11 days after starting with the dilators, and after 3 months I am pretty much back to normal. It is wonderful not to have this terrible burden on me any more. I am very grateful to both Dr Reid and Marek for helping me through all of this.
CommentTO KAREN - Very interested in how the dr. in Sydney helped you get better by removing your bartholin glands. Would love to go to Sydney but can hardly afford the doctors in the U.S. I would appreciate it if you would let me know what your symtoms were before you saw the dr. that helped you. Were you on any of the medications and creams that most of us on this website are being treated with by our drs. I think I can speak for all of us when I say we appreciate hearing from somebody that was blessed to find a cure.
CommentHi Carol, Thanks for your response. To answer your questions: I have been on 50mg Endep (amitriptyline)- I think you call it Elavil in the US. At first this was enough to cure my symptoms and enable me to have pain free sex, but as time went on my pain became worse and the Endep was not enough. I tried going up on Endep but it didn't make any difference. My symptoms may have been complicated by going through menopause as well as I seemed to get much worse when my periods stopped all together. My symptoms have always been vaginal pain which makes sex impossible and without the Endep I also had pain when sitting and wearing tight clothing. I am still on the Endep and when a few months has passed will try slowly going off it. Dr Reid has also put me on Livial HRT and estrogen cream for menopause symptoms. In addition I have had a lot of interference with chronic candida and have been taking Three Lac, Traditional Chinese Medicine and this Dr has also given me Nizoral tablets and Boric acid pessaries for if the symptoms of candida reappear. So many problems that affect the same area! I know how depressing this problem can be as I suffered for such a long time. I hope my response can be of help to some others. I have been to several gynaecologisgts- one suggested I have a vestibulectomy, but I'm glad I sought another opinion as I don't think that would have worked for me. When I first saw Dr Reid, during the examination he pressed on my Bartholin glands and I felt so much pain. I'd never heard of Bartholin glands until I saw him. I really think he is a brilliant surgeon and he is willing to listen to his patients as well.
CommentI have only tylenol and codeine 3/4 of a pill per day. exercies from Spaulding clinic here in medford ma. Dr. Elizabeth STewart renowed in this field and a pain clinic in Harvard van gard in Kenmore Sq. Boston. I`m cutting back on hi oxalate foods and am using Emu oil from a ranch in Montana. I am at least 50 to 60 % pain level. Is there anything else beside calcium citrate I just heard helps. Do tens units help?
CommentHi Karen, Let me first say thank God for the internet. It's so great to hear from somebody down under. I have been in Sydney and loved it. I find your story very interesting also. I have read about Bartholin glands but that is the extent of my knowledge. I have been to so many so called great doctors in the U.S. and they all seem to want to write you a prescription for the antidepressant they are pushing. I take 100 mg of amitripyline at bed time. Great for sleeping. By the way it is the generic for Elavil. Like you it helped a lot for some years but like most meds the dose has to be increased over time. At the moment I am trying to wean off xanax. Not an easy job. I can't complain too much as they have been a life saver while I worked. I am retired now and my goal is to get off of at least the xanax. I was starting to loose my balance and since I am also post menopausal I certainly don't need to take a tumble. I had to give up driving which sucks. Have you ever tried Vagifem. That helps the vaginal dryness a little. It may have a different name in Australia. I am going to make an appointment with my gyne. to check my Bartholin glands. How did Dr. Reid discover your problem. Could he tell by just examining you or is there another test. I am definitely following up on it. Something has to be causing our problem. Hope to hear back from you. I think we all love to read the success stories. It gives us hope. God Bless!
CommentHi Monica, I'm glad that you found my comments interesting. You can tell the state of a woman's Bartholin glands by the doctor pressing on them. I had never had this done to me before so it took me by surprise a bit. Dr. Reid got me to stand up straight and inserted a gloved finger and pressed on the side wall of the vagina. The automatic response if you have pain is to buckle at the knees. I then realized that this is where a lot of the pain is coming from. In his report after the op he expained that the Bartholin glands had atrophied due to constant inflammation and were no longer functioning but still take part in continuing the pain loop. It is microsurgery and takes 2 hrs and an overnight stay in hospital. After that you are right to go about daily activities, but obviously take it pretty easy. After 2 -3 weeks you feel it is pretty much healed up. This type of surgery does take a lot more skill than a vestibulectomy and is not anatomy altering. Last time I saw him Dr Reid said no-one would even be able to tell I had the surgery it has healed up so well and there is no scarring. I don't know how many gynaecologists do this type of surgery but I could obviously recommend my doctor. I'm sure there would be doctors in the states who do it too. As with any surgery, you want to make sure you get the right person to do it! I wish you all the best as you continue to find a solution to this problem. For me it was like trying to find your way through a maze- I had to be the advocate for myself by asking lots of questions as the gynaecologists I saw did not refer me on to a more experienced colleague. Anyway I'm glad I didn't give up on it, as I'm sure we all feel we want to do at times-but it's not really an option if we want to live our lives in a relationship as most people do. Hope my answer provides you with some relevant info as you continue to look for a solution. My best wishes go with you...
CommentPS Monica, I should mention as I did in my very first posting that it is essential to follow up after the surgery with biofeedback therapy using a dilator. The surgery is the first step and biofeedback therapy is the second step to enable the muscles to return to normal functioning
CommentI am a long time reader - first time poster. I always promised myself I would come here to this forum one day and shout out what cured me. Well, I am not cured yet, but I am a hell of a lot more comfortable. I want to share what has worked so far for me in the hopes it will help others. I started having issues after two back to back yeast infections. My vulva was burning and painful and I received a diagnosis of vulvodynia and vulvar vestibulitis. The place I am at right now with my pain is I am mostly pain free in the morning, but it gets worse as the days goes on. The pain is a burning pain. It is worse with sitting and less with standing. Sex is not painful if done first thing in the morning. Here is what I have done to get to this "better" place. These items are listed in the order I did them and I have left out everything that didn't work. Nortriptilyn 10 mg daily Vagifem every night I went on a two month regimen of 300 mg boric acid vaginally at bedtime. The next night I would put in my vagina an acidophilus capsule. Then the third night back to boric acid and so forth. I also took 150 mg diflucan at the end my period and at ovulation. Then I changed the regimen to diflucan weekly for two months and stopped the suppositories. I stopped taking my multivitamin. I was taking New Chapter Organics Women's one daily. This had a bunch of hormone enhancing herbs. I felt better off of it. Then I added into the regimen activated quercitin capsules (Source Naturals Brand). Three capsules daily. Next, I stopped taking my 5-HTP capsule at bedtime. Read somewhere this changes my seratonin level which can affect this kind of pain and they were right. I feel better without it. I do not take diflucan anymore. If I have a really bad pain day, I make a boric acid capsule for my vagina and that helps. Also soaking in a warm bath helps. Things I am going to look into now to see if I can rid of this problem. Adding effexor to my medication regimen. Taking nutmeg oil (young living brand) orally for pain. Trying wearing static magnets in my underwear for several hours a day. Eliminating food allergens via IgG allergy testing. Tissue Salts and Devil's claw are also things I am going to look into. I had a recent doctor tell me. "We need to get you out of pain and keep you that way for a minimum of a year before we consider having you stop anything that you are doing." So there is hope if you can get to a good place, your body will "forget" how to be this way. Best wishes to all of you. If I get the rest of the way out of pain, I will share it with you all what helped.
CommentIs anyone having real success with pain meds? Anyone feeling like they did before vulvodynia? Please share your success story. Thanks
CommentHello all. I have been diagnosed with vulvar vestibulitis and have been responding to Allegra, Domeboro sitz baths, and topical gabapentin. No more redness! However, the burning and stinging pain has not gone away. My current doctor has told me that there is nothing more he can do for me unless I agree to try antidepressant therapy. I have already tried Elavil which gave me high blood pressure, fried my brain, and helped me put on 10 pounds. He wants me on Cymbalta. I know all antidepressants are different, but I would rather not go back on any kind of mood altering medication. I really want to try physical therapy. Has anyone here had any luck with PTs in the DC-MD-VA area?
CommentHello, I know it's hard but I hope ALL of us have a wonderful Christmas with better health ahead of us all. I was diagnosed with Licehens Scelrosus 3 years ago. With the help of many from this site I have been able to keep the Licehens in control. I first started with this terrible burning when I got out of the tub from my normal bath. Well long story short I found I had The LS....Since that is under control I have been left with nerve damage now in the Vulva and Buttocks. Pinch,burn,etc. I Use hormone creme, steroid creme once a week and neurotin 600mg. 3x a week along with tramadol only when needed. I am about 90% better even with all this. I wonder if there is anyone else out there that has experienced the same thing. Healthy Happy New Year to ALL <3 AnneMarie
CommentThis is my first time on the site. I had surgery for vulvar vestibulitis by Dr. Baggish in Cincinnati, Ohio. I was his last surgery before he moved out to California this past summer. After the surgery my recovery seemed to go well. Since then I have had bacterial infections and yeast infections a couple of times now. I ended up on Christmas Day at the emergency room because I was in so much pain, pressure to have to urinate quite a bit. It was a yeast infection. I had this surgery to relieve my pain, but it seems that it has migrated to a new area. I am really red on the outside genitalia area and just hurt. Has anyone had the surgery and then still had problems? If so, what have you done? I am seeing a follow-up doctor from his practice, but he doesn't specialize in this so I am really worried that I need to see someone else. There is a center in Louisville, Kentucky -Pelvic Pain Center and the doctor specializes in vulvar vestibulitis. Has anyone ever been there before?
CommentI am new to this site and this is the first time posting. I am 33 years old. I have suffered with what I think is vulvodynia for almost 2 years now. It started off with a slight discomfort/redness while urinating after foreplay with a new partner, no intercourse. About a month later I had to go on a 2 week antibiotic treatment for a infection not related to the vaginal area. At the same time I took acidophilus and inserted Monistat vaginally at evening, because I figured it would prevent a yeast infection. Never had a yeast infection before, and never used monistat before. By the time I finsished the antibiotics and monistat, I was literally on fire. Went to my ob gyn and she was surprised to see the slide, said she doesnt know what it is. She just said the word Vulvodynia. Needless to say the pain started to be severe, to the point that I barely could walk, sit down or live my life and the burning was severe too. I literally could not sit down because it would hurt, the skin would hurt so bad, that I could not even wear underwear anymore. I used to come home from work and take my panties off and lay in bed under the covers with my legs wide open and don't get out of the bed till next morning. I used to be a very active person, worked out 4-5 times a week, I always tried to be in shape, very sociable and always stayed busy. I have gained 50 pounds in 6 months.The pain was so severe that I bought a 3X mirror to look at my vagina I got terrified when I got to see what it looked like, red, wrinkled, rash on the lips, and vestibuli - never seen anything like that before. Plus it was always wet or felt wet like it was a sweat. When I urinated the discomfort/pain/burning would become unbearble and the skin would turn bright red and would stay like that for hours. My whole life changed. I stoped going out, when my friends or family asked to go out with them, I always used to say how tired I am because I work so hard. The truth was that I could not stand that friction/pain/burning/stinging/irritation in between my legs. I visit my ob gyn, once a month and each month she would take a culture and sometimes would culture for 30+ days and that didnt show anything. I then started reading online about women with similar problems and I cut completely cut off coffee and sweets and noticed a slight improvement in the symptoms. I used to drink coffee every day so that was another slap in my face. I was always tired, moody and had no desire to live anymore. Made me severely depressed. Then I started feeling "crawling" under the skin to the point where I could not even a ring or a watch, socks, pants etc. Needless to say that my husband wasnt happy with me anymore. We completely gave up sex a few years ago, because of his serious medical problems, so sex was out of question, but he just didnt understand why I wasn't happy anymore. This has been the most traumatized experience in my life. We eventually ended up getting a divorce. I also had to quit my job because my job requires a lot of physical activity and I just couldn 't do it anymore. I kept going to the ob gyn and one of the cultures finally showed at least 2 types of non albicans yeasts. So I thought my nightmare came to an end. Didn't get any prescription for the non albicans yeast which I thought was unusual. I came home and googled non albicans yeasts and found out about the amphotericin and flucytosine cream or boric acid suppositories. I, then, convinced my doctor to prescribe me that, insurance didnt pay for it, so that cost about 2,000 dollars and happily started my treatment, only to realize that the best anti yeast medication is not helping with my infection. However at the end of my treatment, something weird which I have never felt before happened, it felt like a burning liquid came out of my vagina and the skin healed in one day, looked completely healed. Thought my nightmare was over. And then it came back within 1 or 2 days. I also think I got the die off symptoms, because I felt a different kind of dizziness. Now after 2 years, I still have pain, burning, stinging and the vulvar vaginal area is red and irritated. Inside I feel like a cyst and when I touch it, it feels hard as a bone, and I never felt that before I got this infection. It hurts when I walk, when I bend over, when I tie my shoes, when I sit down it basically hunts me no matter what activity I try to engace into. I kinda learned to live with this condition, and I feel like a handicaped person. I am still depressed, but try to make the best out of my life. I have given hope that there will be a cure in my life time. What still upsets me is, that before I got this infection, each time I went to the ob gyn office, I never saw a flier about vulvodynia or non albicans yeasts, but I always saw fliers about HPV or genital herpes or bacterial vaginosis. Why vulvodynia or non albicans yeasts are not advertised, so women know that there is such a monstrous disease out there? I eventually talked to a few family member and friends about my pain, and none of these women heard about vulvodynia and looked at me like I was crazy when I told them about it. I think Vulvodynia is a lifetime commitment or a condition hard to cure, and yet there is no education in the dr.'s office about this monster.
CommentThoughts and prayers are with you. We care very much for all , and hope with all my heart, that a good speedy recovery will occur!
CommentHello Christina. I fully understand your problem. I am now in year 14 of this condition and am just trying some new treatments. First I should say that Vulvodynia cannot be caught or passed on. It seems to be the bodys reaction to a stimulus which is then pecived as pain. It can be caused by a number of things and some new findings seem to point to a trauma, such as a car crash or fall involving the spine. Then sometimes many decades later the burning and pain start. Antidepressants help many break the pain signals, so do ask about them. Its a much smaller dose than for depression. Also pain killers work for some. Also Lidocaine, a local anaesthetic cream is good to keep in your handbag. Avoid baths and getting anything other than water near the area. Swimming in anything but sea water is also a no no. Acupuncture can also help with pain. I am seeing a chiropractitioner who is re aligning my bones from a car crash, skiing accident and fall onto my bum many years ago. I hope this will help with my pain. She is a McTimoney Chiropractitioner, which is the correct type to try. I wish you good luck and will let you know how I get on with this treatment, I have so far only had one session.
CommentI drink 4 to 5 bottles of water daily now. I have water with me at all times. I originaly had constant daily pain. The difference between then and now is my commitment to myself and my health. My pain has decreased dramaticaly on neurotin and constant water. I've changed my eating habits and have a list that I will add random foods that bring on pain. I've given up coffee as well as salsa. Those have caused me the most issues. I am feeling better and working towards continued healing. I also take by mouth calcium citrate and a probiotic daily. I try and keep my stress low b/c I can tell pain occurs in stressful times for me. Things are getting better from day 1. I use to always be in pain and have no sex life. Things are managed now. Email me if you'd like to talk.
CommentDear Christina....I was so moved by your entry. You sound EXACTLY like my case. I was on antibiotics for months for a stubborn upper respiratory infection. I ended up with my first ever yeast infection. I was prescribed Monistat..back then, it was only a prescription.(OK.......that dates me) My life TOTALLY changed. I was in constant pain, just like you. After almost a year of suffering, ...dr.s, etc. ..I ended up in the emergency room. An intern told me I had vulvodynia and started me on elavil. He said to get a refill from my dr. It would take awhile, he said 2 mths., but I would feel better. He was right. Well, at least I could wear underwear and walk without dying with pain. Through the years ..I've done all the proposed remedies. I was feeling so well I went off my meds this past summer. I was on 40 milligrams of elavil and 900 milli. of neurontin. I just went off the neurontin....HUGE MISTAKE. Within 2 weeks...agony. Like you..I got divorced. It was a relief not to have the "What the hell is wrong???you can't have sex??? You must be frigid..I don't believe this crap about vulvodynia" from my ex. I've had times when I almost think I could be normal. HOWEVER,, the pain, burning, stinging, redness,horrific agony somehow creeps back. I just had 2 weeks of relatively pain free time. BUT, it's back....but manageable. My advice...get on some good meds...elavil or neurontin or both. Take care of yourself..so what if you're depressed!!!! Who wouldn't be???This illness is by far..pure HELL. Visit this site every day. There are other good sites also. There is a yahoo club called VPD...write them every day ...lots of good advice.Last..buy some Aquaphor cream by Eurcerin and put a dab on after you urinate and deficate. It's VERY soothing. You are NOT alone.
CommentI've been dealing with vuvlvodynia, vestibulitis for a few months now and I find it to be very depressing. I am on an antriptyline cream. This seems to help numb the pain, I was wondering if any body knows the side effects of the cream? Also, my gyn gave me a prescription for doxepin cream, has anyone tried this and did it work? I would appreciate an email from anyone with info, Thanks!
CommentTHIS IS TO SALLY;,,I will try to make this short I suffered for 3 years and got some good info from women her. I couldnt wear underwear or sit at work. I went fromDr.to Dr. and finally got info from this site. I was lucky to get my dermatologist to give me the same diag as a ne gyn and went from there with the meds. I am now down to once or twice a week with steroid creme....very little and 600 mg. 3x a day of neurotin. I am feeling about 95% better but I also get the residual pain in the buttocks and outer area of the V from the inflamed skin for such a long period of time. So that is more difficult to deal with at this time than the burning and stinging of the V. But my chiro. seems to help some of that.I was wondering if you have that pain in the buttocks also. If you would like my e mail i will be glad to give it to you if not you can answer me on this site. OH I also use hormone creme everynite on the outside of the V Hope to hear back AnneMarie
CommentHi Anne Marie and members, I do not have buttock pain. However, I have severe rectal pain. It feels like horrendous hemorroids (sp...why can't I spell that after all these yrs.?)but..my dr. says it is NOT 'roids,..it is the vulvodynia. I am somewhat discouraged. I had several weeks of almost pain free days and now I'm burning, etc. I shouldn't be discouraged..I've been dealing with this FOREVER. I know it will subside..just when?????? Also, I've been putting on anti-yeast cream and now they stopped making my special cream from Walgreens. I can't use cream with phosphorous in it..it burns. I found a three day cream at Walgreens. They recently changed it and it burns to put it on!!!! (Just in case I have yeast?????????????? I thought if it didn't hurt??? Another stab in the dark. So, I'll have to start a new search for a cream that won't burn..Oh boy!!! What fun!!! ) I just found some super stretchy jeans and am living in them. Anne Marie, I rarely use e-mail anymore, so this might be the best place to write each other. If we get too verbose..we can exchange addresses. :)
CommentSally, emu oil is very soothing and doesn't cause me any irritation or burning. It's available online or at health food store. Aquafor is also supposed to be good, but I've never tried it. I hope you get some relief soon.
CommentHi Sally, I also used to have really bad rectal pain and my physiotherapist who specializes in vulvodynia and incontinence gave me exercises to do for that and it's gone now. I hope you find relief soon.
CommentTO SALLY, OH yes i get the rectal pain also...It burnns and hurts after I go to the bathroom...sick of it all..I even get pain along side the V area...I wish I knew of some type of exercise to stregthn the muscles. YES it does also feel like hemroids..(spelling) I use A&D baby diaper creme. That helps sometimes AnneMarie
CommentAnne Marie and members.......WHAT WHAT WHAT???? There is an exercise to rid myself of this awful, debilitating rectal pain?? I've tried kegels and they made it so bad I just hunkered down in bed with drugs until I became somewhat human again. Can I have an address where they show the exercises on the net or something? Maybe you can describe them? I've done it all..I thought..accupuncture..physical therapy..just plain therapy(one dr. thought I was "mental" and sent me to a shrink. I was so desperate , I gave it a try.) Geez, I thought I was the only one with rectal issues. Thanks girls!!! Oh, I just remembered something. I can be relatively rectally pain free, just burning vaginally, and I'll wear some slacks or jeans that may rub just a hint the wrong way, and by nighttime, I'm riddled with rectal ,'roid like pain. Has that happened to any of you? I wish 'freaken jeans would go OUT of style..(.wishful thinking)
CommentHi Sally, It's hard to explain the exercise to you. You need to do internal massage in your v. I really think you should go see a physical therapist that specializes in vulvodynia. I know a physical therapist can be expensive but they are the best people to show you what to do. If you take even just one appointment, you'll have the techniques needed to do the exercises and you'll be able to do them on your own. You might want to read heal pelvic pain by Amy Stein, in chapter 5 she explains how to do the internal massage, but it's still not as good as having a pt show you what to do. Hope this helps you. Where are you from? Maybe someone reading the guestbook can help you find a good pt in your area. Another thing I wanted to mention is: Is it possible that you might have internal hemeroids? I sometimes itch and don't seem to have any hemeroids. I use anusol and then the itch goes away. I had also thought I had candida in the rectal area but the cream brought no relief, only the anusol. Hope this helps and good luck
CommentHi Sally, I forgot to mention.. DO NOT DO KIEGELS. They will cause you more pain. It's better to drop than to squeeze. If you read Amy Stein's book it explains that concept really well. You should only do kiegels once you have learned how to relax your muscles down there (the pelvic floor). I hope you feel better soon
CommentTO SALLY, AND THE MEMBER NONE. I have the exact same thing with jeans . I did buy one pair of "Not my daughters Jeans" I think thats what they are called...expensive but very comfortable. And the member that writes NONE said there are exercises for this rectal and I have amy steins book . I will have to re read it but unfortunately I dont live where there are any therpist familiar with any of this stuff, NONE can you give Sally and myself a little more instructions. I will try the rectal thinhg. AnneMarie
CommentHi Anne-Marie and Sally, When you do the internal massage, you have to aim for the 6 o'clock position (in your v) and massage with your thumb as though you are trying to massage your rectum through the wall of your v. That will give you relief. It does mention massaging at the 6 o'clock position but not in detail. That's why I think a pt can really help you do the necessary exercises. I couldn't have figured it out by myself. Good luck
CommentTO NONE, AM I SUPPOSE TO PUT MY THUMB INSIDE THE V AND MESSAGE THE RECTUM FROM INSIDE WITH THE THUMB....I DONT HAVE AMY'S BOOK WITH ME . ANNEMARIE
CommentAnne Marie and members.....My doctor doesn't even give me internals anymore because it would KILL me. I will buy the book, but... I know I won't be able to do those particular massages. Geez...I can't even get a cu-tip (cotton swab) near there. I'm a hurting unit. I do have a book called "A Headache in the Pelvis" that has exercises that don't involve touching. I'll have to revisit that. Thanks for all the advice girls. 8-)
CommentHello ladies, ANNE-MARIE, that sounds about right, you massage by puting a small amount of pressure and then you can kind of go in circles. Amy Stein's book talks about internal massage and massaging the 6 o'clock position (never the one or two near the bladder... that's a no-no) but it's not really explicit and there are no pictures. As mentioned earlier, had I not seen a pt, I wouldn't have known what to do. There are more resources out there than advertised. The first pt I went to specialized in incontinence and mentioned pelvic pain on her website. I went to see her and she made me do kiegels. It made things worse... When I told her, she told me that I didn't want to help myself. Some time later, I heard about a pt half an hour away from my house through a woman I chatted with on the IC forum who lived fifteen hours away from me. This pt specialized in pelvic floor disorders. She's the one who told me kiegels are useless when you have v and it makes sense, if everything is tense down there, why make it worse by clenching, especially if it doesn't go down when you clench. She taught me about dropping and told me that when you have v, you only do kiegels when things are relax enough down there that the kiegel can release. The pt has really helped me a lot. It's work but it's so worth it. To SALLY, Doing the exercises may hurt at first, thats why seeing a pt can be reassuring if you start hurting but then the more you do it, the more it helps. About the q-tip test, I remember doing it at the beginning of physical therapy. I was told to draw a picture of my v zone and mark every spot that hurt when coming in contact with a q-tip along with a rating from one to ten. I had to do that exercise again later on during treatment and what started off as 9's and tens were reduced to two's, three's and fours in the space of 2 to 4 months. I think pt is a nice alternative to meds and I'm really glad I did it. The relief I have gotten from doing physio was well worth the price and the work. When researching a pt it may be easier to find one if a search is done using the key words pelvic floor disorders. Even if the pt is far away, I would call them and ask them if they know of any other pt's in your area. Usually, there's some kind of network set up and nice pt's will be willing to help you. There are even some registered on this website. I hope both of you and everyone else who has v finds relief soon.
CommentTO NONE AND SALLY;;;NONE,do you know a pt in the south jersey area, Thats where l live.I went to a pt and she told me to do kegels and i knew immediately that was a no no. I started with Lichens Scelrosus of the V when I got that under control it went to this stupid pain around the outside of the V and to the rectum and sometimes the buttocks. I have Amy Steins book but it is a little difficult to understand somethings. Also, I have hthis skin irritation that I take neurotin for and that has helped. After many years my husband of 45 years have been able to be itimate again but I still suffer with this in so many ways. What else is left for me Thanks AnneMarie
CommentTO NONE AND SALLY;;;NONE,do you know a pt in the south jersey area, Thats where l live.I went to a pt and she told me to do kegels and i knew immediately that was a no no. I started with Lichens Scelrosus of the V when I got that under control it went to this stupid pain around the outside of the V and to the rectum and sometimes the buttocks. I have Amy Steins book but it is a little difficult to understand somethings. Also, I have hthis skin irritation that I take neurotin for and that has helped. After many years my husband of 45 years have been able to be itimate again but I still suffer with this in so many ways. What else is left for me Thanks AnneMarie
CommentTO NONE AND SALLY;;;NONE,do you know a pt in the south jersey area, Thats where l live.I went to a pt and she told me to do kegels and i knew immediately that was a no no. I started with Lichens Scelrosus of the V when I got that under control it went to this stupid pain around the outside of the V and to the rectum and sometimes the buttocks. I have Amy Steins book but it is a little difficult to understand somethings. Also, I have hthis skin irritation that I take neurotin for and that has helped. After many years my husband of 45 years have been able to be itimate again but I still suffer with this in so many ways. What else is left for me Thanks AnneMarie
CommentHi Anne-Marie, I bought a book written by physical therapist Isa Herrera this summer called Ending Female Pain, It's quite good and also has an exercise for the buttocks that you can use (you need a foam roller). I think she owns Renew Physical Therapy and has also had vulvodynia herself. There are two clinics:149 Madison Ave. Suite 903 New York, NY 10016 and 293 6th Ave. Brooklyn, NY 11215 . If you google Renew physical therapy, you will get more info. I'm not sure if this is close enough for you but you can always call and see if they can recommend someone closer where you live. She seems to be quite excellent and if I lived close enough, I would definitely go see her. I hope this helps
CommentDEAR NONE I thank you for this info. unfortunately I live in a little town in South Jersey which is very far from the NY location. I will buy the book. I asked my husband if he knows what a foam roller is and he said he thinks he knbows what I am asking for. I assume when I purchase the book she will tell me what I need. I will also call to see if they could suggest some place closer to me. The fact that the author of this book has dealt with vulvodynia really gives me some hope. I dont know if I mentioned I started with Lichens Scelrosus of the V which has been kept at bay for over a year but now I have the rectum thing like Sally has. SALLY I am going to get the book....hope you do to Thank you NONE Anne Marie
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CommentHi, I am new to this, I have been diagnosed about 5 years ago with cyclical vestibulitis secondary to yeast infection and have been on & off ketaconazole during this time. I have recently started on elavil & cymbaltum with good effect. However we have just put in a salt chlorinated pool (a lap pool) so i can do low intensity exercise (have fibromyalgia as well) and I am now having irritation in vv area extending to perineal region after swimming/ Any suggestions re protective barrier cream etc. I live in Australia so weather is quite warm at moment, not like the US.
CommentAngela, some women put vaseline on their vulva before going in the water. Hope that helps.
CommentTO SUE FROM ANNE MARIE,Do you think the vaseline would help if you want to sit in the tub. I cant sit in the tub for more than 5minutes. the skin in and around the Vulva gets very sensitive. Thanks Anne Marie
CommentHi Anne Marie. I think maybe the vaseline would come off the tub, but in a bathing suit, you'd have the barrier of the bathing suit to keep at least some of the vaseline in place.
CommentTO SUE: Hi, you r right about the vaseline coming off in the tub but it is still a good idea and I am going to try it with my bathing suit bottom on. I just want to sit in the tub and relax for a few minutes. Even if I get 10 more minutes with the vaseline in place that would make me feel soo much better. Thanks for the idea. I dont know what type of symptoms you have because I know all of us have something different. I also get the pain along the outer portion of the V that I researched and found that can happen also. YUCK I guess we will neve get done ever...Thanks and if you have any other tips PLEASE let me know AnneMarie
CommentHello Ladies First and foremost let me say how brave we all are to face this on a daily basis without the support we need...both personally and from the medical community. Sadly...like most of you, I had to self diagnose and then finally doc number five confirmed my worst suspicions. She was a dermatologist and god bless her because she actually is familiar with this and has since referred me to a Vulvar specialist. But anyways...I could write out a long letter here...describing in excruciating detail my pain and not to mention psychological damage from all this...but nevermind at this point! Lets get to some treatments and maybe one day a cure? I have found some relief from St Johns Wort and other anti depressants...tried seabuckthorn oil topically...just soothes at times, thats it. This is really quite frustrating because its such a shot in the dark in terms of treatments...just reading here...seeing how many women have turned themselves into guinea pigs. But I guess thats part of the journey. Anyways...god bless you all.
CommentWas wondering how you cope with the psychological effects of vulvodynia. To me that's the worst part of this condition. After several years of trying many many remedies, I have come to accept that this is a condition I MAY have to live with. There are several books out there on what to do to physically alleviate the pain. But what about the psychological ramifications? How do you cope with feeling like you are depriving partner of something? Or how do you cope with getting up the courage to date in the first place? I am fortunate to be in a relationship with an understanding partner at this time. However, I have no interest in anything sexual. ANYTHING at all. I wish it weren't so, but it's the truth. It's bad enough having to live a life avoiding activities to keep the burning at bay. My libido has flown out the window. It has been replaced by fear- extreme fear. The only reason I'd want to change that, would be for my partner. As for me, I'd be happy to never deal with anything sexual again. I had no pain prior to my last sexual relationship, and so I associate anything physical with emotional and physical pain. Been through counseling, but the truth is I just want to avoid the whole thing. If I could, I would. But I don't know how long my bf will deal with this. And so I feel I must "fix" things for him. It seems so unfair. Thanks for listening. Would appreciate any feedback. Anyone else feel this way? Prayers to you all. :)
CommentTo Snowflake: :) Your contribution to the guestbook really struck a chord with me. You are right in saying how brave we are. The combination of being a guinea pig and having very little support from the medical community is rough. Thank goodness for support group sites like this one. I was interested in your experiences with St. John's Wort. I'm about to try that myself! You sound like a brave person yourself. Are you able to correspond by email? If not, that's fine- you can just post on here. Thanks again for your thoughts and blessings. :)
CommentTo none and anyone else: please feel free to email me at vulvodyniagroup416@gmail.com...the ``group`` referring to a support group I am desperately trying to start up in toronto. Thank you for your kind words...I try my best but again some days are really rough...to say the least...life seems very limited at the moment...in terms of the St Johns Wort it seemed to work the first couple of days and now....nothing really to write home about! But who knows....maybe just having a bad day or something. Well my vulva is the fulcrum of my existence now....has eclipsed any plans that I had for the future....any concerts I wanna go to...anything pertaining to fun...what a silly thing this vulvodynia thing is...if you think about it...like an invisible cripple! Well im optimistic that we will all find something that at the very least makes life manageable again and enables us to function at a level to where we used to be. I just wanna go to med school and start writing prescriptions for you guys! Mwahahaha. Hmmmm....Lyrica for so and so....Celebrex for such and such...oh maybe Ami for ....lol. Anyways....one day at a time. Peace out...Noni :)
CommentTO SUE:::Thank you for the vaseline tip. I didnt have any in the house but I did have A&D ointment that I use sometimes for dryness. I used that and put my bathing suit on and sat in the tub (used just the bottom of suit) I took a BATH Yeah thanks to your great idea. Anne Marie
CommentYou website is amazing, seriously! I love all your products. Please visit my site www.plussizepinup.com - Plus Size Lingerie, and tell me how you like it.
CommentHello, my name is Katie. I have been reading these posts for quite a while now. Please listen to what I have to say, I need help or advice or something. I was diagnosed with vulvar vestibulitis. I am 18 now, and have been dealing with this for a year now. It all started back last year when I was having unbearable menstral cramps. So my mom and now mother in law advised me to get birth control to help ease the cramps. Well, guess what my cramps got so much better. I think it all started from the BC pills. I was on Loestrin and then switched to Ortho Tri Cyclen Lo due to nausea. Before I went on the pill, me and my boyfriend (now husband) would have sex and it would occasionally burn afterwards. But I just figured it was because I was too dry. (Im really petite as well) So Im not sure if this had something to do with it, or the BC pills just made it really worse. After the BC pilld I started burning really bad with sex and it became really painful with burning, and when I would pee it would just burn and burn. So I went to my gyn, they said I had a yeast infection and gave me the little pink pills. So me, had no idea what was coming for me. I have been to five doctors since then. 3 gyns and 2 uros. I first started with my first gyn and i asked her what caused the burning and she said she didnt know, and for me to practice abstinence. WHO wants to do that??? SO I switched gyns. This doctor did tests, everything came back normal. She tried me on so many medicines: Estrace(help for awhile then made it burn incredibly worse), Clobetisol(same as estrace), Amnitryptiline(didnt work at all just made me extremely tired), Flexoril(didnt work), gave me antibiotics. Nothing worked. During all this I experienced pain when urinating. I had to push for it to come out so I went to a uro she had refered me too. He said I had severe stenosis and I had to have my urethra dilated. So I went to have that done and that mostly helped that problem. But all the other excrusiating pain was still there :( So I went to a different gyn and he said I had chronic vestibulitis. So I went and had a perinneal plasty done. (that was three months ago) still trying to stretch. If anyone had this, how long did it take till you could have sex again, pain free?? It mostly took care of around the rim of the vagina. But it still burns above and around my urethra. I got married a month ago, with my high school sweet heart. He is very understanding ( thank God)! He and my mom are the only things from not keeping me from laying in my bed all day! This is a horrible thing that some women go through! I pray everyday for this condition to be cured. I also have been trying the low oxalate diet. It seems to help, I can see a difference and have only been doing it a week. But the pain is still there, Unfortunately. I also recently went off the BC pill and already have seen a difference. I was so dry when I was on the pill, and its crazy how much that has changed. I drink lots of water every day. That helps tremendosely. I have also recently noticed that if I eat sugar, my vulva is screaming!! It also makes it harder to pass urine. Another thing I seem to have, is like the glands under the urethra, that go into the vagina, they feel a contact pain when I touch them or lightly push. Does anyone else have this pain??? Im really concerned because I told this to my uro and he said it could possibly be urethral diverticulim. I really dont want to have another surgery. Nor can I afford it. Also as those glands go inside the vagina, like on the right side where the crease is from the glands, is completely sore. Idk what that could be. :/ I use neosporin with pain relief. and that soothes it sometimes, or Ill use a cold pack. I am going to my family doctor to get a referrel to a specialist soon. Hopefully they can help me in some way. I know how much of a struggle it is everyday to push yourself to do things. Atleast this is the way I feel. Im 18, who wants to deal with this!? I keep telling myself it could be worse you know. My brother died of cancer, and my dad suffered and died from ALS. All in one year..So yes it could be worse ha. I thank God for each day, and hope for cure. But until then, Ill try and keep my head up :)
CommentDear Katie, Sorry we've taken so long to reply. Believe me, we FEEL your pain. I'm, so sorry you are suffering this illness so young in life. It sounds to me like you have a good handle on your treatment. You became very proactive right away..that is good. Your case sounds exactlly like many of us on this site..a whole batch of factors lined up at the same time and rendered you with vulvodynia...BC pills, yeast medicine that made it worse, etc... One thing..did you take the antidepressant for more than 8 weeks before you gave it up.? Sometimes those pills take awhile to work. My doctor said it would take 2-3 months and he was right. Keep searching for a sympathetic doctor because it can make a world of difference. Keep reading all the back entries on this site to look for something that you think may help. Also, there are groups on Yahoo that deal with vulvar issues exactly like ours. Just log into Yahoo Groups and list vulvodynia and they will come up. Stay away from skin tight jeans and slacks until this illness abates..tightness only aggravates..BIG TIME!! You're young...so maybe a short jean skirt???Still HOT, in fashion, but no pain!! Also, buy a cream called Vanicream from Walmart. They have to order it from the pharmacy,( it's not a script) but it is very cooling and will not irritate. You have done an exemplary job battling this illness and I'm positive you will get it under control. We're all praying together for a cure soon!!! Keep posting and we'll see what we can come up with for you.
CommentHi sally! So since I went off the bc pills i have seen a tremendous difference. I was sooo dry before and I think that is why I got irritated to everything. I couldnt even use my shampoo, I had to change to baby shampoo. Its also ph balanced. But recently I have been using my hubbys shampoo because the baby shampoo makes it kind of oily. But that problem seems to have gone away. Now I am at the point where I can actually play around with my hubby. I tihnk the dryness had a huge factor there as well. I bought a dilator set that I have been using and that seems to be helping with my surgery. As for the anti depressant I took it for about a little over three months. It ade me soooo tired haha. I was falling asleep in church. Sleeping all day. It was only 10 mg. I dont know if I mentioned before but one of my doctors put me on Flexirel. Or however you spell it. It was for the muscles I think ( this was before my surgery) That didnt help. Then she said if that didnt work that she was gonna do the kenalog injection. ( I dont do well with needles) Especially down there!! Cant imagine. Thats when I had my surgery. About the cream, it that the same type as vaicaine from walmart? I used that once and it burned like crazy! I immediately wiped it off. I also tryed auqaphor. That would irritate as well. Last summer I used Petroleum jelly with my bathing suit that helped. But recentely I have been doing alot better. I also tryed the vitamin e oil, but that irritated as well. What im using now is neosporin, with the pain reliever in it. I apply at night. I am going to start taking calcium tomorrow. I have before I just usually forget. The only problems I have now is when I pee, it just burns kind of when it comes out. Idk if im thinking to much about it, since my dilation. I just want to pee normal again ha. Its like I need to relax my muscles. But the calcium helps with that. So im gonna start. Also as I mentioned before, like the area below the urethra and the vagina, its like a contact pain. Only hurts when I sorta push. Only sometimes though, so that gives me doubts about the diverticulum. The only other things is when I eat sugar and high oxalate foods. especially tomatoes!!! I was crazy about ketchup too! Im going through withdrawls ha. But I am going to see a specialist once my files get transfered. Hopefully they will help me. :) I know how hard this is! I would just lay in my bed and cry allllll day. I was beginning to consume me. But im getting through it, one step at a time. I deff need patience lol. It will work out in the end though. I have faith. I am too praying everyday! With God all things are possible!
CommentKatie, You said you had surgery called a perrineal plasty. What is that? You said it really helped.
CommentWell when I went to my last gyn, he diagnosed me with chronic vestibulitis. He asked me to try the Clobetesol for two weeks and if it did not work to come back and he will schedule the surgery. (even though I knew the meds wouldnt work. When he told me about the surgery I asked him so a vestibulectomy? he said well you have been doing your research. So I am guessing it is something similar to that. What he did was he took away the skin/glands in a U shape. I am still healing but I think it will be a success. Before I couldnt even touch it, and the sides were blooddd red. It was so bad. Like I said I just have to deal with the top part of the vulva now.
CommentKATIE, I too am happy to see that you have pretty much got a handle on your problem. I have been dealing with my problem for more than 10 years. Have tried pretty much everything out there with very little results. It sadens me when I read about those of you that are suffering with this at such a young age. I was married and had my kids before it started with me. I appraud you for getting married and living your life in spite of it. Way to go girl. Its good to keep busy and not think about it. My husband and I saw a movie that is currently in the theatres, UNKNOWN, and I never once felt my pain or burning. Great movie! You mentioned in your post that your dr. removed U shaped glands/skin. Do you know if they were called Bartholin glands? A lady from Sydney had hers removed and it solved her problem. I hope you keep gettting better and God bless you.
CommentHe Carolyn! Im sorry to hear that! I sometimes get depressed. Mostly when im in pain. Its so difficult, I just try to think of the little kids out there that are far worse then me and try to suck it up ha. I have found that when im doing stuff it does keep my mind off of it and the pain goes away. I think stress is a big factor as well. When I go out shopping or to the grocery store, it seems to let up tremendously. On my wedding day I was pain free. Go figure. Some days are better than others. Today im having a bad day. I ate some of those marshmellow peep things. There good :) I am deffinately paying for it! Hopefully if I drink some water and put some neosporin on it, it would ease it. Ill be okay though. Ive gotten this far. I do believe that they were the Bartholin glands! Most of my problems now are in the Skene glands, more so to the right. Still waiting on my referel. Keeping faith<3 It really helps to pour out my mind on here!! Give my mom and hubby a break :) God bless
CommentHi everyone....I have posted and read so many times...It seems I get one thing under control and something else starts up. Does anyone experience pinching in the V areas for no reason. And if so what do u do to help it. Thanks for anyone's help
CommentHi Everyone, does anybody tried the Interferon injection, what do you think?
CommentHi everyone, I just bought a book that has lots of info on Vulvodynia, IC, vaginal infections, LS, etc. I ordered it from Amazon. com. through the NVA.org. site. Some of the proceeds goes into Vulvodynia research. It's called "When Sex Hurts" by Andrew Goldstein MD, Caroline Pukall Ph.D, Irwin Goldstein, MD.
CommentHi , I was diagnosed with LS about 3 years ago and I have been in remission for at least one full year...thanks to this site and the info and help from memebers. Now I have a burning in the buttocks when I sit. I just had a check up with the dermatologist and he said there is no LS anywhere Does anyone else have pain when sitting in the buttocks and if so what helps. Any info would be appreciated....Thanks
CommentHi , I was diagnosed with LS about 3 years ago and I have been in remission for at least one full year...thanks to this site and the info and help from memebers. Now I have a burning in the buttocks when I sit. I just had a check up with the dermatologist and he said there is no LS anywhere Does anyone else have pain when sitting in the buttocks and if so what helps. Any info would be appreciated....Thanks
CommentHello ladies, my name is Desiree i'm 17 and have both vulvodynia & vestibultis. I've had these condition for over 2 years, if anyone of you ladies need someone to talk to please feel free to email me, I hope you ladies have many pain-free days ahead.........
CommentDoes anyone know of a Vulvodynia specialist in Las Vegas?Thanks for any help.
CommentTo Sue: Have you thought of trying phydical therapy? here's a physical therapist who specializes in pelvic pain in Las Vegas: Tina L. Baum http://www.pelvicfloortherapy.com/
CommentThank you for the recommendation of the PT in Las Vegas. It will be a few months til we move down there, so I was just doing research ahead of time.
CommentAfter many years of contributing to the vulvodynia association I find our that the money is being use for a new building.I'm 84 years old and am tired of waiting for the research to come up with a possible cure -or even some new form of teatment.My dream is to be cured before I die.
CommentVera, are you talking about the Vulvar Pain Foundation, or the National Vulvodynia Association?
CommentI hear the complaint about building a new office for one of the foundations. I, too, have been dealing with this insidious illness for 30 yrs. I'm in a horrible flare and am trying my old remedies. NOTHING is working, So, it's spring and I have tons of work to do. But, here I sit, cripppled up with a bottom on fire. So discouraging. I doubt if I will see a cure in my lifetime either. If I had all the money I spent on doctors, creams , ointments , pills, liquids, bath salts, etc....I'd be able to live in Hawaii for 3 yrs. in a posh hotel on the beach. No...the researchers need a new building. Big Hooray for them!
CommentI hear the complaint about building a new office for one of the foundations. I, too, have been dealing with this insidious illness for 30 yrs. I'm in a horrible flare and am trying my old remedies. NOTHING is working, So, it's spring and I have tons of work to do. But, here I sit, cripppled up with a bottom on fire. So discouraging. I doubt if I will see a cure in my lifetime either. If I had all the money I spent on doctors, creams , ointments , pills, liquids, bath salts, etc....I'd be able to live in Hawaii for 3 yrs. in a posh hotel on the beach. No...the researchers need a new building. Big Hooray for them!
CommentI too have been dealing with Vulvodynia off and on for 30 years. It's hard to fathom that it's been that long. Thankfully, I'm not suffering now as much as I use to, but I worry that the awful 24/7 burn will return at any time. Sally, I have also sad that there won't be a cure for Vulvodynia in my lifetime either.
CommentHello I live in Ontario Canada..does anyone know a specialist in this area that can help me. Thanks so much. T
CommentTo Tammy: Where are you in Ontario?
CommentDear readers...week 2 of a horrible flare. I went to my dr. She ruled out urinary tract infection. She did see some spores that might be yeast, so she gave me a script for that. It is one giant pill. Because she had to look down there and take some samples....I am now in agony. Also , a Women's Health Center opened up next door to my dr. about a year ago. My doctor said she'd heard good things about them and to give it a try. But...guess what...they deal with every woman's issue out there EXCEPT vulvodynia. The receptionist said that the Women's Health Center's three women dr.s DO NOT have the expertise and training to deal with this particular women's illness. Oh...here's another shocker..I had to spell out the illness on a scrap sheet of paper before the receptionist disappeared behind the inner sanctum that protects the doctors from sick patients. Nothing is any different...in 30 yrs. NOTHING has changed. If you are not of child bearing yrs., having a baby, or going through menopause, you are out of luck. So disappointing. I can't believe after all these yrs., I got my hopes up. You'd think I'd know better. My own GP can deal with this the best she can, but not these three dr.s. I guess I am bitter. Meanwhile, I'm drinking tons of water, not eating any carbs or sweets, wearing loose clothing and taking drugs to try to get through this. Also...I've become somewhat reclusive because the pain is so bad, I can not think well enough , or feel comfortable enough to be out in public. Oh pooh! Any suggestions?
CommentHi Sally. I'm not surprised those Drs. don't treat Vulvodynia and they aren't willing to learn about it b/c it's more lucrative to deliver a baby. There are a lot of Gyno's where I live, but none of them know how to treat Vulvodynia and refer their Vulvodynia patients to the "expert" around here. I saw him and he was arguing with me when I told him most of my pain was on the left side. On top of that, he will only agree to see a few new patients, so I don't know what the other patients are supposed to do. I've given up on finding a Gyno and just have my Internist prescribe my Estrace Cream. You and I have had Vulvodynia for the same amount of time, unfortunately.
CommentTo Respondent....Yes, I agree. I'm sticking w/ my GP. At least she is willing to try different things with me and doesn't shy away. This center boasts.."Total Women's Health"..What a joke! Our only so called expert in my area is an oncologist! He starts out by sayibg ,"I just want you to know that this vulvodynia may lead to cancer." Well then...that just makes one feel hopeful now, doesn't it???? He's a pill pusher, period. Yes, it looks like me and my GP, and this web site and some other sites will have to stick it out together.
CommentI got vulvodynia shortly after I got treatment for HPV warts, My gyno took a while to relized I got warts so when she removed them using a chemical they were everywhere. Anyway that was in 2005, 7 months after I got married (I was a virin but my husband was not) I saw 10 different doctors for my pain, one wanted to give me hormone creams, other pills for depression, other wasted to do surgery, etc. I came to this website and I did not feel alone, I could only let my husband near me, oral sex or keep my legs very tight to simulate penetration, it was awful. then in 2007 I found a homeopatic guy that told me about waterterapy, I started cleaning my vagina with cold (ice) water, eating healthier, exercising etc. I was able to have sex, with pain but with the right foreplay and lub it was bearable. We were able to have a baby after that once in a while it was not painful at all. by 2010 I could almost do doggy and now 2011 I can say I am 90% cured and I can only thank God for it, something that nobody would help me with for years, my shame, my calvary is gone. I wanted to share this with other women out there. God bless you
CommentDear Karen.....Could you tell us any more about this water therapy. I've tried washing with distilled water. ..no luck. I do eat extremely healthily. I'm anal about it. Also, I do upper body exercise and lower body stretching. I can't do a lot of walking or vigorous cardio because the burning and swelling vaginally and rectally are NOT worth it. Please let us know about water therapy. Is there anything else besides washing with cold water?
CommentI have been living with this condidtion for 3 years now, and although it comes and goes, the depression that accompanies it do not. I have an understanding man, who loves me, and finds me atractive. However, his desire for sex far surpases mine, due to the depression and the fear of pain from sex. I know if I don't learn to please him in other ways I will lose him, but if I please him I become aroused and then I want sex, I normally end up over doing it and paying for it for the next 5 to 7 days. Thanks you for this website and the expertise and opinions of other women. I was two years into this mess when I was finally diagnosed, 5 Obgyn's later. I am one of the lucky ones who has been able to find ways to abate the condition from time to time, but everyday is a challenge and some days are harder than others. I know it won't ever go away, but I am determined that I will not let it ruin my life.
CommentWater or ice therapy, worked for me as well. You can take a cold pack and apply it to your vaginal area for about 15 min anytime during the day. I normally did this at night or directly after having sex. It helps immensly with the burning. You can also wash the area ligthly (don't scrub) with cold water, it's soothign when the tissue is angry or dry. The ice packs worked the best for me.
CommentWater or ice therapy, worked for me as well. You can take a cold pack and apply it to your vaginal area for about 15 min anytime during the day. I normally did this at night or directly after having sex. It helps immensly with the burning. You can also wash the area ligthly (don't scrub) with cold water, it's soothign when the tissue is angry or dry. The ice packs worked the best for me.
CommentJenna and members...Thank you for your last sentence saying that you are determined not to let this condition ruin your life. I retired from 42 yrs. of teaching in 2009. I went on to become a landlady for 4 units. I was feeling pretty good, so I could do a lot of the painting and clean-ups myself. Now, I'm in a sickening flare , and, of course, am panicking about all the work in front of me. But, I'm not going to let this ruin my new life and career. Somehow, I will work around it. Thanks for the inspirational words.
CommentI was diagnosed with vulvodynia this March after many treatments for bacterial infections and yeast infections. I was so frustrated because nothing I tried worked, and I was in constant pain/burning. Unfortunately, one doctor told me I had vulvodynia but then left me high and dry to deal with the problem by myself because he didn't know what to do. I was terrified reading the horror stories of other women with this condition. Finally I found a good ob/gyn who put me on nortriptyline and suggested that I go to a physical therapist. I also stopped using birth control. Now I am up to 50mg on the nortriptyline and I see the physical therapist once a week. The PT specializes in pelvic floor dysfunction and most of her patients have some form of vulvodynia. I was so relieved not to be alone anymore! Now only two months later I don't have constant pain and I have resumed all of my activities except for wearing jeans, which I am slowly working towards. I plan on seeing the PT until I am completely better, which she thinks should be sometime in the next few months. Even if you have tried everything else, you should ask your doctor about trying physical therapy with someone who specializes in women's issues because it has really helped me.
CommentHi Jackie. It's great to hear how well you're doing. I've been thinking about trying Nortriptyline also. First, I have to find a Gyno who knows what Vulvodynia is and how to treat it. It makes me angry how many Drs. aren't willing to learn about it and how to treat it. I don't have the warm fuzzies for any Dr, unfortunately.
CommentHi Sue, I can't say for sure if the nortriptyline is working or the PT is what is really helping. It is hard to tell because I have been doing them at the same time. I totally understand your frustration with doctors! My PT knows more about vulvodynia than my ob/gyn, but the doctor is willing to try different things that he has seen work. Good luck with your doctor search, and run if they suggest anything that sounds too crazy!
CommentDear ladies, I am a long time reader, but never a poster. I have had some success with my vulvodynia and I would like to share with you what I have done to get to a better place. The burning has stopped. I can sit in comfort now. Sex is mostly pain free. I still cannot wear jeans or tight clothing. In the past I noticed my vaginal burning got worse the higher my vagina pH was (6+). Vagina pH is supposed to be 4.5. I got a sinus infection and decided to treat it naturally with Young Living Essential oils, the thieves blend in particular. I filled one empty gel cap with 10 drops of thieves oil. I filled a second gel cap with olive oil (I would get heartburn otherwise). I took this remedy with lunch and dinner for two days and then once daily for 6 days. I would take one Young Living Life 5 probiotic at bedtime. My vaginal burning was greatly reduced after this regimen. My gyn then switched me from daily vagifem to a pea sized amount of estrace cream applied at bedtime. This combination of things have brought me to the good place that I am now with this condition. In the past, if the burning was bad I would peel a garlic clove, wrap it in a sterile gauze, tie it off with plain dental floss and insert it into the vagina overnight. That would always help. Many blessings to all of you out there still suffering. -Denise
CommentHi Everyone - just hoping someone out there can help me. I was at my Ob Gyne yesterday and although she is very familiar with vulvodynia she admits she has no answers. Anyway she said she attended a conference and learned about a Dr. Hope Haefner at the University of Michigan, Ann Arbor, Mi. My doctor feels that Dr. Haefner may be of some help to me. Before I make the long and expensive trip to Ann Arbor I was wondering if one of you nice ladies had seen her and was she able to help you. I would spend my last dollar and go to the ends of the earth to get some relief from this darn problem. I already spent a small fortune with no results. I would appreciate info. from anyone. Thanks in advance.
Comment@ Carolyn: I am not familiar with the doctor you mentioned in your post. Sorry. All I can suggest is do some research beforehand and go to the appointment with a game plan. Have your list of questions with you...dont be shy or hesitate. You cant afford to at these times. I learned the hard way. We really need to fight for our rights in the healthcare system, especially since we are women and our vioces get shut out all too often. Im in Canada, the healthcare system is OK. Lots of specialist visits are paid for as long as you get a referral from your GP or another doctor. My prayers are with you. I hope you have a good support sytem...family, friends, etc. Its a long and hard journey. But we can do it, one step at a time.
CommentThere may be a "cause" that not too many people are aware of. The cause may be an "antibiotic"... specifically, a Fluoroquinolone, such as Cipro(Ciprofloxacin), Levaquin(Levofloxacin), Avelox(Moxifloxacin), Floxin(Ofloxacin) or others of this particular class. This one class of "antibiotic" (which works by destroying DNA and healthy cells), has the potential to cause great damage and injury to the patient, so much so that there is currently a Black-Box Warning on them along with thousands of lawsuits against Johnson & Johnson for "Levaquin Tendon Rupture", which can occur up to 2 years after stopping the drug. Many patients and even their doctors never correlate their symptoms to the drug. Tendon rupture is the least of a patients worries as the Fluoroquinolones are shown to be toxic to cells and every system of the body, leaving a trail of injury and destruction.... everything from joint and cartilage damage, heart problems, digestive issues, central nervous system damage, kidney problems... the list is endless. Please check your medical records to see if perhaps a Fluoroquinolone could be the culprit. For more info search, WIKI, YouTube and Friend on Facebook "Fluoroquinolone Toxicity". Thank you.
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CommentHas anyone out there had any success with botox? There is a plastic surgeon in manchester, new hampshire who deals with vaginismus & vulva pain. He was recently FDA approved..I am undecided if I should go forward with this. I've been suffering with vulvudynia for 15 yrs.
CommentI was recently diagnosed with focal vulvodynia. It was the most devastating news I had received, with the exception of the passing of my mother. I am 29. I've had several vaginal infections over the last 2 years, with vaginal pain with intercourse off and on over the last 10 years. How I was diagnosed was I had felt I had vaginal inflammation, thinking I had another infection I went to my primary MD. She couldn't find anything wrong, so she referred me to an OB/GYN. With in 10 seconds of my physical exam, he knew exactly what I had. I was prescribed amitriptyline 10mg daily for a week then increase to 20mg daily. This has improved the pain somewhat, but not completely. I keep reading about PT. Wondering if this has worked for many people? I've also read that this could be caused by the body's response to inflammation/allergies. I've had dermagraphia for years now, which I'm on several different allergy medications on to control it. Basically, without allergy meds, my body flares up with histamine, causing itching and red raised welts all over my body. I'm wondering if these two conditions are connected. I would love any help or advice offered on these diagnoses.
CommentHI Jennifer, I have had vulvodynia for over three years now, it started after a miscarriage. I had been having issues with vestibulitis before that, maybe for about ten years. I do pt, it has not made my condition go away but it does make the all the time pain go away and that makes it really worth it for me. Some lucky women do pt for a while and go in remission, for me it is something I have to do regularly in order not to feel the burning. Learning how to address issues that stress me out also helps me manage the burning, along with drinking lots of water, the more water I drink, the less pain I will feel. I would also like to tell you to carefully research who you are going to see if you are going to try pt, just like any other profession, some pt's are more qualified in regard to treating vulvodynia than others, Ask questions and make sure that you find a pt tha has lots of experience working with women who have vulvodynia. I first saw a pt who told me she could help me but by doing her exercises, I found that I had more pain than before, she specialized in incontinence and gave me incontinence exercises to do, If your pt makes you do keigels instead of telling you to drop your pelvic floor, you need to look for a new pt. I hope you will feel better soon.
CommentHi girls, other than Sheila, is there anyone that has experienced buttocks pain as well a vulva problems. I am much better after using estrace, and a steroid cremem but I have this pain in buttocks area and sometimes down my inner leg. I am going to see a PT next week...I was hoping others have had this buttocks problem and could shed some light. thanks
CommentHi getting better, It's nice to hear that you are getting better! I used to have pain in the buttocks, I bought a hard foam roller thingy and followed some exercises found in Isa Herrera's book (I can't remember the title exactly, I think it's ending female pain). I think the pain in the buttocks is due to overly tight muscles and bad circulation down there. Another thing that has helped me is to start walking, it seems to help the muscles a lot. Good luck!
CommentI've got buttocks pain, too. Doc says this is from the pudendal nerve being irritated. He has me on Lyrica and amitriptyline. I've been unable to increase the dosages quickly due to extreme tiredness, so I'm not on the therapeutic dosages. Currently on 25 mg of amitriptyline and 50 mg of Lyrica with no decrease in vag symptoms (one spot at the 7 o'clock position that is irritated) nor the buttocks pain (right-sided pain between sit bone and rectum). I tried PT a year or so ago, but it only triggered flares. My gyn recommended an acupuncture doctor who works with vulvodynia patients with a pretty good success rate unlike the other acupuncture doctors who were a total waste of money. I'll see what happens. Can't find any rhyme or reason to the pain besides worse during ovulation and right before my period.
CommentHello, I was diagnosed with vulvodynia last year when I was 18. I fortunately do not have any burning or itching during my day, but I cannot have sex at all which is how I found out what I have. My boyfriend of 2 years has been really supportive which I am happy about, but it still leaves me feeling hopeless about ever having sex. I was diagnosed with endometriosis at a very young age, 11 years. When I realized something was wrong I saw my endometriosis doctor who was not understanding at all and basically degraded me for being 18 and having a sex life. I am seeing a really great vulvodynia specialist and am on gabapentin as well as clobetasol. So far nothing has improved, but I am going to see a physical therapist very soon and they are upping my medication. I worry that with the combination of endometriosis and vulvodynia I may not be able to have children. I feel like I probably have a long wait before I am able to have sex with my boyfriend but I know that he is willing to wait. It can be frustrating at times but I do feel lucky that I do not have pain regularly and only when I have tried to have sex.
CommentHello Jess, I hope you will soon find relief from your pain and I hope that the physical therapy will help bring you to a point where you will feel much better. I just wanted to let you know that even if you have endometriosis and vulvodynia, it is still possible to have children. Talk to your physical therapist about both your conditions, she or he may be able to refer you to other specialists they know that can help you.
CommentI first came here almost 10 years ago when I was diagnosed with Vulvodynia/Vestibulitis. I check back here maybe once a year or so. I lived in dresses for 2 years solid. VV made my life hell. I will never say I am cured as I dont htink anyone with VV can be "cured" but I know it can be kept under control once you find your reason. There are many reasons for VV. I was thankful a woman came here and posted that was better and I have been friends with her for almost 10 years. Her name was Wendy and she created quite a stir here since her methods were different. Well, when you are in pain like I was, you will try anything and I am so glad I listened to her. She uses muscle testing to allow her body to know what it needs. This is used for foods, supplements, prescriptions etc. You can learn how to do this on Google. It takes way to long to explain it. My former chiropractor uses muscle testing to know what areas of the body to treat. I also was soooo lucky to find a D.O. that specializes in gynecology. She has also helped me so much. I was able to wear jeans again and have sex by using muscle testing on my foods and was never really quite sure what to try as far as supplements. I know now that I was feelingbetter becaus I was staying away from all of the wrong foods. I found this doctor during a flareup, as I dont ALWAYS stay away from foods, and when I have a flare I always go to the gyn to make sure its a flare and not an infection since we never seem to know since it feels the same. This new gyn. did a newer vaginal culture that checked for superbugs and she also decided to test my urine for everything that could be wrong. My vag, culture was all negative, which was awesome. No infection, but my urine showed I had crystals. She didnt really tell me anything about the crystals, but told me to see a urologist. Well, I got sick and had to go to my primary and I showed him my results and instead of a urologist he sent me to a nephrologist. The Neph. had me collect my urine in 2 jugs over a weekend. One I had to keep in a cooler, the other had some very stinky preservative in it. He tested me for oxalates, which is a cause of some womens VV, and tested me for it even in my blood, I was negative, but I DO have URIC ACID. Those were the crystals that showed in my first urine test. I did some research on this and talked to my usual gyn and she said that the acid could cause my vulva to burn. I do not have this all the time so the Neph. didnt put me on meds. I was instructed to drink 2 to 2.5 litres of water daily. I dont get thirsty so this was very difficult for me. After about a week my flareup went away. I decided to do some research online and somehow came across a woman named Laura that links vulvodynia to an acidic body. The diet for uric acid is an alkaline diet. Which is why when I muscle tested I was feeling better, because I was eating foods that were keeping me more alkaline. I just didnt really know that at the time. Laura was also "cured" from VV as long as she stayed on an alkaline diet. Which is very hard. So she told me about a product called Buffer pH by a company called Vaxa. She also told me to check my urine pH. I am very acidic. I had the priviledge of meeting Wendy when she came from Cali to Fl. about 2 years ago. I drove 8 hours to meet her and her husband and foster daughter. I brought foods and supplements with me and she tested me on everything. I had done so myself and we just double checked that I was doing it right and that we got the same results. Wendy had issues with yeast and calcium oxalates, so the foods and even the buffer ph I can eat and use she can not. I also had some yeast and I took some Diflucan for about a month, watched by my doc. I continue to TRY and eat right and use my buffer ph. Recently, about 3 months ago I was very busy and wasnt doing myself right and not drinking my water. I got a flareup that was awful. After 2 months I decided ot go to that DO and she said I had bacterial vaginosis. So it is always good to see a doc when you have a flare. I never have had an infection when Ive burned. She treated me for is using Tindamax and it went away. My brother was recently in an accident and my othe rbrother was married an dI have not been drinking my water alen have bene running around trying to help them out. I got burning back again. This new gyn also told me she thinks my issue is from the uric acid. She told me to continue on the buffer pH especially if I wont always eat right and to keep on my water/ She also said I can add cherry juice from the health food store as it helps to get rid og uric acid naturally. If none of you have been tested for uric acid or even oxalates, you would be wise to do so. I wish someone would have tested me for them many years ago. There is a product a company posted about here years ago called Acid Redux. Some women were saying how they were helped by it. I didnt know why at the time. Now I do. It alkalized their bodies! Less acid coming out in the urine. Acid burns the delicate skin. I still will only take Buffer pH by Vaxa. It is a homeopathic and helps to repair the body. I love this stuff and am doing my very best to take it times a day like I am supposed to and drinking my water, forcing it is more like it. Will this help everyone, probably not, but its worth it to have your urine tested. I also have VERY low vitamin D levels. I wonder how many of you have that as well. An out of whack body pH can cause your vagina to be out of whack as well.
CommentHi everyone, I just wanted to post my new blog here http://www.followyourheart513.blogspot.com/ about dealing with vulvodynia and endometriosis. Because I am young my target is mostly a younger audience but older people are definitely welcome to read as well.
Commentsorry i just changed the blog to a new link http://followyourheart513.blogspot.com/ if you want to check it out that would be great.
Commenthello, i have not been diagnosed with vulvodynia yet, but my ob/gyn hinted towards it. she never even said the word vulvodynia, she just gave me prescription for amitriptyline and left the room. i never filled the prescription, as i always knew it to be an antidepressant and the dr didnt explain what it was for. i would much rather try something else though. maybe something topical or milder. my symptoms arent debilitating, theyre just driving me crazy. does anyone have any suggestions? the pain is just at the border between being internal and external... i dont really know how to describe it... i have been turned away by 5 doctors to date, with all of them trying different things to treat the problem. it started with a yeast infection that they felt was chronic. i have been on diflucan repeatedly, boric acid capsules, canesten creams, triacomb cream, and terazol.i experienced one month of relief after three months of taking diflucan weekly. everything else either helped for a day or a week at most. maybe they didnt even help at all, and it was just because i wasnt having sex. if im not having sex, it doesnt affect me very much. it has just become a slight pricking. however, when i do have sex, it is painful and the pain lasts for days, or even weeks. my last doctor managed to actually make some sense. she said she didnt know what it was but she acknowledged that i have a combination of problems. firstly the pain, and secondly, i have a thick discharge that only emerges exactly four days after sex, and then goes away. she said both should probably be treated differently and referred my to another ob/gyn. any ideas?
CommentHi Ladies. My name is Kathy and too have vulvodynia. I suspect I have had it for 28 years but was diagnosed about 11 years ago. I tried various things - anti-funal tablets, antidepressants and biofeedback before I decided to have surgery. After surgery and more biofeedback I was pain free for about 9 or 10 years. Within the last two years I have developed pain again, but not nearly as bad. I have had biofeedback and am taking Pristiq (a new anti-depressant). I still have a bit of pain with intercourse but I am managing and am not too stressed by it at this point. Funnily enough I also take Cialis (the erectile dysfunction pill for men) when I am going to have sex and that helps with the pain and increases pleasure. I am also a PhD candidate at the University of Sydney and I am conducting some research on treatment seeking for genital pain conditions. Dr Glazer suggested I post on the guest book to see if anyone is interested in participating. If you are interested you can get more information directly from me at my email address above or you can go directly to the survey by clicking this link: <a href="http://www.surveymonkey.com/s/FemaleGenitalPain">Click here to take survey</a> Thanks for reading this. Kathy
CommentHI, I just wanted to let everyone know about a new radio show on pelvic health. Pelvic Zen premieres August 2nd! Pelvic Zen is an Internet-based radio show on BlogTalkRadio launching this August! The show is designed to address sensitive issues related to the pelvic floor and to provide support to those that suffer from these conditions. Examples of topics that will be addressed include: urinary and fecal incontinence, prolapse, constipation, male and female chronic pelvic pain, sexual pain and dysfunctions, and pregnancy-related issues. The audience can listen to live shows, call in, and submit questions in a chat room format that will be addressed on air. Future shows, guest speakers, and archived shows will be included on Pelvic Zen's homepage on BlogTalkRadio. The show will air on the first Tuesday of every month from 5:30-6:00pm. Sullivan Physical Therapy's very own, Angela Dobinsky, PT will be hosting this show. For more information regarding the show of to inquire about guest speaking opportunities, please contact Angela at angelad@sullivanphysicaltherapy.com Pelvic Zen premieres Tuesday, August 2nd at 5:30pm CST. To access that show, please bookmark this link: http://www.blogtalkradio.com/pelviczen
CommentHi Everyone: This is my first time posting but have been suffering from vulvodynia for many years. My problem has never been diagnosed by any of the many doctors I have seen. When I ask them if it could be vulvodynia some of them didn't know what I was talking about and others have prescribed antidepressants and creams. Over the years I have tried everything I have read about on this website. Nothing has helped. I was watching the Dr. Oz show during the week and the topic was medical marijuana. Montel Williams was a guest on the show as well as a M.D. who prescribes it to some of his patients. It gave Montel who suffers from MS his life back. Another lady in the audience suffered from seizures and had to give up her job and driving. Eight years ago a doctor prescribed marijuana for her and since then she is back working and driving. There were guests who were for it and against it. The bigest thing against it was addiction. Well I am addicted to antidepressants that do nothing for me so why not try something that might work. unfortunately, it is not legal in my state yet. My question is if anyone of you who suffers from this awful disease has ever discussed it with a doctor. I am sure alll of us who suffer are very responsible people and would not abuse the drug. The disease is abusing us and I am ready to fight back. I would appreciate your thoughts on this. By the way Dr. Oz is in favor of responsibly prescribing it just like he prescribes other drugs with far worse side effects.
CommentTo Jackie - Your post really got my attention. I just saw the very end of Dr. Oz's program and I also found it interesting. I had not even thought of it for vulvodynia. Its not legal in my state either but I think it is legal in about 34 states. I also have suffered with vulvodynia for many years and like you have tried almost every drug and cream out there to no avail. If medical marijuana was legal I would not even know how to use it. Do you smoke it? I don't mind taking pills but I can't even imagine having a stash in my purse and smoking a joint. Can it be turned into pill form? Boy! you got me thinking though. Hope someone responds to you and enlighten us a little. Good luck!
Commenthi , my name is karina and i have to say omg im ready to pass out and cry myself to relief... i am usually the happy go lucky person and i feel that since i been diagnosed with vulvodynia i cant be that person again.. ive seen 3 obg/yn and allll say the same...its probably just a yeast infection then the fourth doctor tells me its vulvodynia but he has no clue on how to treat it or atleast make it more comftable for me i have been taking diflucan 150mg and yeast infection creams and the symptoms go away for a while then soon after intercourse it comes back or if there is any penetration on the clitoris it burns extremely and its driving me crazy im so embarrased i cant even tell my boyfriend whats going on because of what he may think i have also been on estrogen cream like (premarin) and it relieved it for a bit and soon after it came back.. im at my witts end .. i dont have any itching any discharge no swollen anything .. it just BURNS !! does anyone have any suggestions i could maybe bring up to my doctor or anything i can do to aliviate the pain even if its for a few months .. i cant take this anymore
CommentTo Karina: You might ask your dr about boric acid suppositories which help to balance the ph of the vagina and ward off the yeast overgrowth. Once the skin is inflammed from a combination of the yeast and scratching, sex and semen easily cause the burning sensation. Be honest with your partner and take a few weeks off. I know that's not easy to do but it beats hurting. Take care.
CommentHi, my name is Jessica. I have beem having intense itching 'down below', since Im only 14 i have been really worried about this but I am to scared to tell me parents. A week ago, i felt like i have to go to the bathroom ALL the time and when I did go it hurt and i peed alot of blood, once i started drinking more water the blood when away as did *some* of the pain which now only comes once im done going to the bathroom. The itching is really bad, but i have checked myself and there are no bumps or inflamation which really doesnt worry me but the itching does. If there is anyone who can help me either get rid of the pain and itching on my own or help me find a way to tell my parents that would be wonderful. Thank you.
CommentI just left a comment above, my name is Jessica and im 14. I dont know if this helps or not, but i have not started my period yet.
CommentTo Jess: You are a young lady and must share these things with your parents as you grow. The symptoms you describe are typical of a bladder infection, simply fixed with medication. Please don't shy away from learning about your body, and asking questions. Bladder infections, yeast infections and other common "women's" problems are part of growing up. You should be able to talk openly to your mom about such things, your body is not dirty or something to be ashamed of.
CommentAge 52, postmenopausal After routine pap got my 1st ever uti. Was on 4 different antibiotics over a month's time. Uti came back 3 times. Was in ER 2x with bloody urine containing matter. Finally defeated uti. Yeast infections started during antibiotic use. Antifungal cream and antifungal pill prescriged to help those go away. As yeast infection ceased, that's when vulvodynia started. Constant burning in opening to vagina. Feels warm and heat eminates to butt and down legs sometimes. There's an urge to urinate but can ignore it. Movement/exercise helps and reduces pain to 0 sometimes. Just rode my bike and feel like I really did some damage to myself. Won't ride again with this. The vulvodynia just started a few weeks ago and have not attempted, nor do I want to attempt sex. Have been seeing my family doc, who is very good. Don't want to return to the gynecologist that I think gave me uti through bacteria on instruments. Now I want referral to new gynecologist. I hope I can get rid of this.
CommentVivian, I'm also post-menopausal and riding a bike causes me a lot of pain too. If you're interested, there's a bike seat you can buy online called the Spongy Wonder Bike Seat. I don't have one but another Vulvodynia sufferer has one and loves it. I hope you find some relief soon.
CommentThanks for the bike seat hint. If Ketoconazole helps reduce the pain at the vaginal entrance, does this mean I have some kind of fungus that is treated by the cream? It really does help and almost immediately.
CommentOne more thing I thought of. The last couple of posts are by me too. On my last doctor visit 2 weeks ago before I started using anti-fungal cream I asked for a ph reading of my vagina. I am post menopausal and the # was 8. At that visit I had some tests done (I'll have to find out if the tests were another wet mound or a culture). Doc office called few days later and said NO yeast, NO infection. But anti-fungal cream always makes sore vagina entrance feel much better, very tolerable. How can anti-fungal provide consistent relief if there is supposedly no fungus/yeast? Thanks.
CommentContinuing from previous posts of mine. At my last appt about 2 weeks ago I requested a ph of vagina. It was 8. I am post menopausal. At that appt some tests (not sure if the test was another wet mount or a culture) were taken. Doc office called back and stated NO yeast, NO infection. If no yeast, then how come the anti-fungal cream always provides relief? Thanks. If this is a duplicate post, sorry. I did not see the other one I thought I sent.
CommentThanks for the Bike seat name. I am managing sex now so the only thing I really miss is riding a bike. Will have to give it a go. To Vivian. Perhaps the anit-fungal cream helps relieve the burn because it is moisturising the area...One component of my pain this that I get really dry skin and it cracks. I use almond oil to moisturise the area and that really seems to help with that aspect of my pain.
CommentEmu oil works great for dryness and burning. My burning is always worse when I'm dry. I get cracks in the skin too sometimes, especially when I'm constipated and straining to go.
CommentHello, I am 24 years old and have been diagnosed with primary vestibulitis. I have no pain other than upon attempting intercourse or trying to insert a tampon. Is anyone able to advise what has been most helpful? Is physical therapy most effective if I am sure I do not have any infection/skin related problems? I have been on the pill since I was 16 which really helped clear my skin - I never realised it might cause other problems. Whilst I have a supportive boyfriend neither of us are happy in an unfulfilling physical relationship - I am considering surgery next year if I can't resolve this with alternative treatment. Thank you in advance for any suggestions/feedback!
CommentHi LAB. I can only tell you what worked for me...I found physical therapy/biofeedback very helpful but it didn't solve all of my problems. I also had surgery which was really helpful but didn't solve all my problems. I am also on a low dose of antidepressants and that helps as well. I had to try 6 or 7 different ones to find the one that was most effective for me that didn't have side effects (unable to orgasm). Most of the side effects of the antidepressants go away within a few weeks so my advice is give each one a really good go and persist with trying different ones. It is not a fun process but well worth it if it brings results. I also found that during all of my years of trying to find helpful treatment the times that I was the least distressed by it all were the times when my husband and I were able to be sexually intimate in other ways (rather than intercourse/genital contact). That also took some work but in the end well worth it. I am the woman who posted the link to the research and what I am finding with the women I am talking to is that it can be a long road to finding solutions. I was so inspired by my participants and their (and their partners) committment to finding solutions that work for them individually and as couples. It is a frustrating journey but one that can be managed satisfactorily and from my own experience, and that of others, a relationship can flourish through it. Kathy
Commenthi ladies.this is the first time i wrote on this site.my nightmare started over two years ago.i went to a womens clinic for a yeast infection she gave me diflucan just one pill.well thats when it all started.within 30 minutes my vagina throat and inside of ears felt like they where on fire.that was on a friday.by monday all my skin on my vagina was gone like i sat in hot boiling oil.so monday i called the womens clinic again she told me to use a&d ointment.within 2 days the skin healed up.but the burning pain in all 3 places was still there.then after 3 weeks i had really bad discharge.so i made a appointment again she checked me again and told me i had bv.o just great she said the diflucan killed the good and bad bacteria.so she gave me flagle the pills.i thought the nightmare was bad all ready boy was i mistaken.i took the first pill then the second 1 10 hours later now im cooked.within 30 minutes of that second pill the burning increased 100 times worse .i thought i could breathe fire lol.you could feel the burning heat right thru my pants.it also felt my whole body was on fire.i had to keep on taking a cold bath just to cool down.then it felt just like my body was hooked up to jumper cables. and every 15 seconds my body felt like it was getting a zap.then i really started to panic.within 5 days i lost 10 pounds i just couldnt eat.by then the zapping issue was getting out of control.so i made a dr appointment with a regular dr.i told him everthing he wasnt to worried about the burning issue but the zapping issue so he sent me for blood work.well i got the blood work done the hospital called and told me my sodium level was very low to drink gatorade that should help.they said that is why i keep on having the zapping feeling.i had this feeling for 8 months so thats all i drank for all that time.but the vagina and anal burning was still there.so i went to another dr and explained what was going on and he said it was mild case of steven johnson syndrone.it affects the mucous membranes in some people.he said within 5 or 6 months it should be gone.boy is he wrong.so i waited 6 months and seen a internal medicine dr because the vagina and anal pain was still there.i told him everything he gave me a exam and told me i had linchen planus.so he gave me steroid cream to use really big mistake.i used it for 3 weeks by the end of the 3rd week there was nothing lefted of my vagina lips.just to walk was painful.so i had appointment with that same dr i told him about the thinning i was having. he wanted me to see a gyno that he works with to make sure it really was linchen planus.i dont think he knew what he was talking about.i went to see the gyno he said definaly not it was not linchen planus.he doesnt know what is going on.he took swabs to make sure there was no infection.guess what there was bv again.so this time he gave me cream instead of pills no more pills for me.this cream had anti imflammatory in it so here goes the thinning of my vagina again.i think all the burning that im still having after 2 years is the steroid cream it ruined my nerves down there.i tried everything on my vagina now im not using anything im giving it a break lol.the pain and burning is still there not a 10 but maybe a 7.well about 6 months ago i made another appointment with a gyno about 45 minutes away from my house.so i told him everything what happened he told me it was vulvodynia.so he gave me nortriptyline 25 mg.he told me if its not working after 3 weeks to call back and he will up the dose to 50 mg.so within 3 weeks its not working so i called he upped the dose.it made me really sick it felt like i had stomach acid coming up into my throat.so i called back so then he want me try another antidepressant.well this 1 was for seizures .so i looked up on the internet for side effects they where really scary .like hair loss no way was i going to take it no thank you lol.well right now im at a loss at where to turn next.it seems like i tried everything and the burning is still there.every time i read on this site about women on here using diflucan i want to kringe. because that what started it all off for me.so if any of you women have in fection please go all natural cures instead of using all the poison like antibotics.i finally got rid of my bv by doing it naturally.if you want to know what i used just email me.i was also talking to a alternative medicine dr that helped me out alot.he was a god send.i hope all you ladies on here the best.i know we all need it.i just hope this goes away soon because i dont know how much more i can stand.thanks for reading.
CommentHello everyone, It has been sometime now since I have been on this site. I want to say again, as I have in the past, I have gotten some wonderful help here and because of the posts, I found I had lichens scelrosis of the vulva. It took me almost 1 1/2 years to get what I needed which was clobetasol 3x a day for 3 months....then I tapered down. My dermatologist was willing to give this treatment a try and it worked. I also bought the V book by Dr. Stewart. All the information i got on this site was in that book and more. The sad thing is I got all the other symptoms that a women can get. After I got the LS under control I use the clobetasol 2x a week and I use estrace hormone creme every nite lightly in the vulva. I then developed pain in the buttock and inner thigh and because of the V book I was able to determine that I needed a female physical therapist that specialized in these types of problems. She has helped me tremendously but now I have stinging in the clitoral area...Would't you know it....I have only been suffering for a little over 4years...I guess I need a little more. So now I am using the estrace in that area and will use the clobetasol and also lidociane when i need it. I forgot to mention that I am on neurotin 3x a day total dose is 1800 mg. That has also helped me with some strange crawling feelings and stinging in the vulva and on the outside of the vulva. I hope there is someone else that can talk to me if they have had all these symptoms and I hope I have been able to help others. I also take tramadol 50mg. when I think the pain is getting bad in the buttocks again or when the burning is starting to frighten me again. The V book was a suggestion a long time ago by a site member and I am very thankful AnneMarie
CommentHello Ladies, I wrote in the guestbook earlier about my vulvodynia and treatment with nortriptyline (25mg a day) and pelvic floor physical therapy. I felt like I was seeing great physical results to my vagina and pelvic muscles, but the burning and itching have lasted since 12/10. I have been under the care of a gynecologist, but becuase we didn't see any external changes, he and my physical therapist were pretty sure it was a nerve problem that would get better with physical therapy. Well, during my last period the pain and itching became unbearable. In addition, my pt noticed that my vulva skin was turning white. My doctor did a vulva biopsy and I received the results yesterday. I have lichen simplex chronicus, which is basically a severe itch/scratch condition. I am using clobestal twice a day for 4-6 weeks and with time and proper care my doctor says the skin should heal. I am so relieved. I attribute my long-standing irritation which led to the LSC to repeated yeast cream treatments. It itched so I thought it was yeast, the treatment led to more itching and scratching and the cycle continued... If any of you even remotely suspect that you may have a skin problem and not a nerve condition, please ask your doctor for a biopsy. The biopsy is not fun, but I feel so releived psychologically to have an answer. I have suffered with the physical and mental anguish of this for so long, and I hope that my experience will help someone else get a diagnosis. I will keep you all updated on progress. With hope, Jackie
CommentTO JACKIE, I was wondering if you read the post I made right before your' post. I was diag. with Lichens Scelrosus about the same as yours, but no itch. I have been doing the same treatment....I would really like to talk to you and if you would like here is my e mail amzy46@gmail.com...I would really like to talk with you as I also see a Physicial Therapist for some muscle'spasms that occurred after the Lichens was controlled. I have beeen free of the white patches, for over a year now...THANK GOD I would love to hear from you AnneMarie
CommentHello, A year ago I wrote here about clitoral pain, my doctor gave me a referral to see a gynecologist. I got a call from the secretary three weeks ago letting me know that I could finally have an appointment with her. So many things have happened in the last year, I got pregnant and gave birth to a beautiful baby girl. I was hoping that the natural delivery would erase the pain but although there has been a huge improvement, I'm still feeling weird and kind of dead down there. Imagine my surprise when the gyne told me I see four things wrong with you after 2 minutes of poking and prodding... I have lichens sclerosis on the top of my clitoris, I have vestibulitis, vulvodynia and bv. My jaw dropped when she told me all that. I also have two fissures at the 5 o'clock and 7 o'clock position. Wow, so many things going on down there. She prescribed betaderm for the lichens and clotrimaderm + hyderm for the fissures along with stuff for the bv. She said we should attack that for now and then deal with the rest later. She also recommended taking vitamin d, zinc and probiotics. I've seen so many specialists, doctors, naturopaths, acupuncturists, a physio etc... I guess there's always more to learn to make your condition less of a mystery. Just wanted to share.
CommentHi ladies, have been reading your posts on this website for some time and have tried almost everything that has been suggested by a lot of you but unfortunately nothing has helped me. I am at my wits end and have decided to seek out a doctor that does vestibulectomies. It can't hurt anymore than I do now or at least I hope so. My question is has any one of you ladies had the surgery done or know of any one who had it done. I live in the Chicago area and if anyone knows a reputable vulvar specialist in this area I would greatly appreciate it. Any comments or thoughts would also be welcome. Thanks!
CommentHello, I was diagnosed with Vulvodynia about 14 years ago. Yes, that's a long time ago. After about 6 years, with the symptoms of Vulvodynia beginning in 1998, the Vulvodynia disappeared. There is hope, I am proof. I went through years of suffering, and even came to the point of not wanting to live like that anymore. I been to every kind of doctor, had every test done, been treated with everything you can think of, accept for surgery on the vulva. The only surgery I had was a hymenotomy. I think that's what it was called. Anyways, the only thing that tests would show was chronic inflammation on multiple biopsies, and that my pelvic muscles were weak but too tense. I can't give you an exact answer on what cured me, I can only give you what I think helped to cure me. One is using a biofeedback machine, physical therapy for anal muscle problems, a surgery called hymenotomy where the doctor cuts the hymen to loosen the muscle so it's not in constant spasm, low dose valium to help with burning with urination after hymentonomy, then finally childbirth. After the hymenotomy, my constant burning pain ceased and I only had severe pain when having sexual intercourse and burning with urination. After I had my first child, which was a year or so after I had the hymenotomy, no more pain with intercourse. I was completely 100% normal again, no burning, no pain, and on no meds, and no treatment of any kind. I had a period of about 7 years perfectly normal. However, just after I had my son in 2010, there was this itching, for 4 months. I thought, yeast, but no yeast ever cultured, nothing ever cultured. In Oct. 2010 took antibiotic, followed by yeast med, and everything was gone for a month and a half. Then it came back. Had a biospy, came back chronic contact dermatitis? How? I don't use anything down there? Interesting huh? Currently on antibiotic again for what I believe is lactobacillosis. Anyway, the symptoms I am currently experiencing is not the same as a long time ago. It's constant itching, like you have a yeast infection, or some kind of infection. It is not like the severe constant burning like someone was setting my vulva on fire like several years ago. I believe what I have now is called lactobacillosis. The only thing that I have been officially diagnosed with is chronic contact dermatitis of the vulva. Doctor's don't know the cause yet, but I think I do, overgrowth of lactobacilli. So now I'm on another mission. I just want all of you who are still suffering from the symptoms of vulvodynia to keep going, don't lose hope. I got through those 6 years of hell, and then had 7 years of peace, and now, I have to deal with a different problem, with different symptoms but I'm still going to believe there is an answer, and I WILL FIND IT. Has anyone experienced constant itching and suspect lactobacillosis? Has anyone on here ever been diagnosed with lactobacillosis and been cured? Has anyone ever been diagnosed with chronic contact dermatitis of the vulva and found out exactly what was causing it?
CommentThank you so much for allowing those of us who are suffering to find some relief though you pages. I even started a blog to shine light on the issue and hope it would lead to help others. http://thewomanwiththeirregularvulva.blogspot.com/
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CommentIf you are suffering from pelvic floor dysfunction, burning pain like a bladder infection even if you don't have an infection, yeast infections, hair falling out, flu like symptoms like an achy body, gain or lost a lot of weight in a short period of time, stomach pains, lower back pain, painful intercourse, etc... Please read my story at www.symptomanswers.com. I can save you a lot of time and money by reading my story. I am pain free now and you can be too in the coming weeks.
CommentTo Shelby, I was diag. with Lichens Scelrosus in 2008. Long story short, from this site, I received so much help. I used clobetasol 3xaday for 4 months and tapered to 2xa week. I got that under control and now am dealing with the butt and anus pain that you mentioned. I am currently getting help with a female physical therapist. I feel I will always have discomfort but I am much better than I was in 2008. I am hoping now, after reading your post that maybe I will be pain free. I do exercises at home and still use estrace hormone creme and clobetasol. I pray I dont get the new problem you now have.
Commenti have different areas of pain. the worst is the clitoraldynia. the worst side effect to this whole thing is how its affecting my marriage. my husband really really likes sex. So i am still having sex with him, though it hurts. he said he understood but he really doesnt. im so afriad if i dont give him what he wants- he will go somewhere else. i havent been diagnosed yet, my appt is in 2 days but i KNOW this is it. what do i do to get through to my husband?
CommentTo VTG & All: I am husband and father of two daughters ages 17 and 23. I have been married 28 years and posted on this site since guestbook 13 when my wife was diagnosed with vulvodynia. He symptoms were a recurrent paper like cut at the 6 oclock position and raw skin of the labia and clitoris. I apologize in advance to any women who belive this is not a place for men, although I disagree and think we are stronger together than alone. I stopped posting because at least one or two women were upset by my presence and bluntness. A couple of years ago my wife was diagnosed with breast cancer and thank God survived that event. She was also diagnosed with lichen's sclerosis. The medication (tamoxifen) she takes to lower her estrogen which increases the risk of her specific cancer also makes all her symptoms of lichens worse. Basically if she uses plenty of lubrication we can have intercourse infrequently. I cannot give her pleasure with my fingers or through oral sex because her skin is so raw. Regarding cheating, I think that men who will cheat will do so wheter or not their wives can share intimacy with them. I think about sex, lovemaking and what we had constantly. I am frustrated and depressed by that loss and at the same time grateful she is still in my life. This is a very confusing and difficult time for both of us. I believe the best you can do is share your feeling and fears with the person you love. I try to avoid situations where I am around attractive women so I am not frustrated further but it doesn't help much. I avoid my wife because it is torture to not hold her and love her. I understand her pain and I don't want to make it worse. Like a person who is dying of thirst I understand there is no water, but I am still thirsty. I pray your husbands will have the love and caring necessary to cope with these painful conditions you must endure. Nature has designed us to have this almost unending, insatiable instinct to be sexual and at the same time we must strive to rise above that to be caring, compassionate partners. Frank
CommentFrank, I'm so glad to see you posting again. It's important to get a man's point of view on the subject. Does your wife use a steroid ointment for her Lichen Sclerosis? I use it once a week as I have Lichen Sclerosis too, although it's in remission. I too have probelms at the 6 o'clock position. Estrace cream helps me, but I remember you saying in the past that it didn't help your wife. I pray that all of us find somethig to alleviate the pain and burning so we can have a normal llife. HAPPY THANKSGIVING EVERYONE. Sue
CommentHi Sue: I not going to make a habit of posting because I don't want to cause anyone in need to shy away. My wife does use betamthasone diproprionate for the lichen's but it doesn't seem to help much. Since her breast cancer is estrogen sensitive she can't use estrace. This is a very difficult thing to deal with on many levels. I just wanted to make the point which I believe to be true, a caring, thoughtful man will not cheat. I have a strong sex drive, and I think about and crave intimacy all the time, but I know it can't happen. The man who will cheat will do so even if he has a healthy sex life with his wife, vulvodynia is not the problem with fidelity. I really had hoped this site would be more active and that more would be done to treat vulvodynia and other related illnesses discussed. My best to all, and now I'll keep quiet. Frank
CommentI just wanted to share my story since I understand what it's like to feel hopeless about this. As far as I can tell, I was born with vulvodynia. Starting with my first sexual encounter when I was 16, I was in severe pain. Sex was not an option and I lost a lot of relationships due to this. I am now 26 and am just starting to feel painless sex. I am still dealing with the mental issues involved in this and the post-traumatic stress of losing many people I loved due to my inability to have sex, but I am working through that. The thing that worked for me was topical Gapabentin. I found out that it worked when I took it in pill form for some ear pain I was having, and suddenly I wasn't feeling vaginal pain. I went to my doctor and after 4 months of pleading with her and several other doctors, I found one that was willing to write me a prescription of Gabapentin as a topical treatment. I didn't want to continue taking the pills because they made me dizzy. After one month of daily topical treatment with Gapapentin, I was pretty much pain-free. It works, you just have to get your doctor to prescribe it for you. I wish more people knew about this... This is coming from someone who has never had enjoyable sex and doesn't know what it's like to be able to connect with someone on that level. Things are changing for me now and one day I may be mentally cured from the trauma that this brought on.
CommentFrank- i appreciate your comments really. It is nice i think to hear from a mans point of view as the man in the relationship is suffering also. i had my appt and the dr told me he thought i had hpv and did a biopsy. results come back next week. but i am so confused. can hpv cause this pain? with the prevalence of HPV i find hardly anywhere that it causes the symptoms i am having. anyone hear of this? I dont think he is right.
CommentHi, I wanted to direct this to Sue. I tried this once already and I dont see the post. Sue, you stated you were in remission from Lichens Scelrosus. I wanted to know, at this time, do you have any type of symptoms like burn,sting,or pain even though you are in remission and how long have you been in remission. I was diag. 6 months ago and I would like very much to hear back from you if you don't mind. Thank you for your help Meg
CommentHi, Sue, this is a question directed to you. I hope you dont mind. I have tried this 3 times and for some reason I cant' get the post to show. I was diag. with Lichens S. 6 months ago. You said you have been in remission. I wanted to know if you are completely free of any symptoms or do you still get, either pain, burning or pinching at anytime? Thank You for your help Meg
CommentI can't believe this guestbook is still going, I haven't been here in years and Frank I can't believe you are still here, fighting the good fight :). At the moment I am collecting information on women who's vulvodynia was possibly triggered by a vaccination. At the time I got sick I received the hep b vaccinations and I have been reading a lot about the immune system and how vaccination additives such as mercury and aluminium can promote t-helper 2 dominance (lots of inflammation). I was 100% well before then. I do not want to start a debate in the the pros and cons of vaccination. I am pro-vaccination if it is done in a safe way that is consistent with the Hippocratic oath philosopy of 'do no harm'. If this applies to you please email me directly on lizj279@yahoo.com.au with your specific symptoms, when they started and when and what vaccination you received. Thanks
CommentHi Meg. Most of the time I'm OK unless I have sex or ride the stationary bike, or sit for a long period of time. I have generalized Vulvodynia and Vestibulitis. I'm lucky that the Clobetasol ointment I use once a week helps reduce the burning and the Estrace cream is the biggest help. I also go to Acupuncture and don't wear panties if I don't have to. I hope something I said helps. Sue
CommentTO SUE, Thank you for your response. So I guess there is hope for me too. I have to say the terrible burning is gone. I sometimes get this prickly type feeling in the clitoris and some pain on the inner thigh when I sit too much. I just started to use a hormone creme about 2 months ago. Do you ever get that prickly or needle pinch in the clitoris or anywhere at all? Meg
CommentHi Meg. Once in awhile I get that pinching too. Yesterday, I made the mistake of using the stationary bike. I'm getting rid of it so I won't be tempted to use it again.
CommentTO SUE: Thank you for your answer, it makes me feel a little better that someone else gets those pinching feelings. This thing has got me so out of control. I also forgot to ask you, if you don't mind...I also get muscle spasms around the anus....(I hate disgusing this) but it may help my state of mind if I know that others get that pain in that area....Thank you again, I hope you don't mind all these questions.....your responses have helped me Meg
CommentI've had V for 3 years now. I am better as far as every day living is concerned. Virtually no pain. Sex is still out of the question. These posts by women who are enduring pain because they are fearful of their significant other leaving them makes me very very sad and angry. I keep thinking that if this were a man's problem, there is no way that they would put up with excruciating pain to keep the woman in their life. Why do women have to feel like martyrs? Just a philosophical question I am throwing out to the group. I am thankful that my boyfriend is empathic, and doesn't make me feel guilty for what I am unable to do. It is a strange world we live in- where women feel they must endure pain in exchange for companionship. Wishing everyone on here peace and relief and happiness!
CommentTo Anon, I have been happily married to my husband for 30 years and suffer from vulvodynia for nearly 15 years. I am like the lady that is afraid that if she doesn't have sex with her husband that he will find it elsewhere. I also suffer pain for days after sex but I have been around long enough to know that most women can live quite well without sex but men are sexual creatures by nature. My husband and I have agreed that we do it every two weeks. I enjoy sex just as much as he does so sometimes we have to suffer a little in this life to keep someone that is worth suffering for. Significant others will never understand how vulvodynia makes us feel. I recently read a post from a husband named Frank and it really upset me. He posted about not being able to have sex with his wife and how frustrated he was and it was hard for him to be around attractive women. In my opinion he made himself out to be a martyr. I hope he surrounds with a lot of unattractive women so he doesn't get too frustrated. But I must give him an A for honesty. Thats how God made men and no matter how independent we ladies think we are we need them in our lives.
CommentTo Betty, I agree with your post. That husband that posted about being frustrated...well isn't that too bad for him. Im just curious why his poor wife doesn't post instead of him. She is the one with the pain and physical as well a mental uspsets. I havent been on lots of these women sites but the ones I have been on do not have male posts. I have had vulvodynia for about a year and my husband talks to only me and the doctor about it. Just curious
CommentTo Betty & Just Curious: I would advise other ladies to not read past this point, I prefer to explain myself and answer the curious. I have read and posted here since 2000, and during that time I believe I have helped many women who did not receive answers from anyone else. The problem with this most personal and intimate illness is that it is just that and suffering in silence or keeping it between you and your spouse makes it worse. The research and treatments have not been forthcoming and that concerns me because I have daughters who may one day become sufferers! We should be able to openly discuss this issue as responsible adults and not children afraid of who might hear. Yes, I'm a man and I am out spoken because I am troubled and frustrated, and hate not getting answers almost as much as I hate this illness. We live in a civilized society and strive to be well behaved, thoughtful and considerate of others, at least I do, But, we are still driven by our biology, hormones and instincts. I am not a martyr, I'm a loving, caring guy, remaing faithful while trying to make some sense of life and the disparity between men and women illness and age affect. My wife has absolutely no concern that I will be unfaithful, no fear of losing me to another, but she does understand that I am upset, frustrated and depressed in not being able to give her pleasure. I was never into drinking, drugs or trying to bed any other woman than my wife. We shared a feast of intimacy and I will always remember those times, be thankful for them and miss them dearly. Yes, it is too bad for me, the same way it is for women who are married to good men who have erectile dysfunction. Ladies, the difference between us is more than physical, I have compassion for both people in the relationship. My wife does not read or post here because she has no interest, no desire to share, to inspire others to join together and fight the injustice. The medical community is the enemy in my opinion, not a complaining husband! I wish I had the words to express to you the person I am and not the person you imagine. I will stop posting if you have no more questions, but that won't help the women and men who suffer and fear coming forward because of closed minds and mean spirits. We are stronger together, but some women don't see that and the men in their lives won't bother to come forward and be heard. Frank
CommentTo Just Curious, Thank you for responding to my post. I am glad someone else agrees with me about that husband Frank. My husband would never respond to any lady on this web site. Its kind of obvious that this site is for women helping other women with a similar problem. We don't need a frustrated husband telling us how badly he feels. I agree with you that his wife should be the one posting.
CommentTo Frank, I looked back since you said you have been posting since 2000 and I dont see where you solved anyone's problems...seems strange to me , as I agree with Betty, that your wife doesnt want to share and help but you do.....All that blah blah about being an adult etc....how about women who don't want men listening to their female problems with their female parts....Just Saying !!!!!!
CommentTo Frank, I looked back since you said you have been posting since 2000 and I dont see where you solved anyone's problems...seems strange to me , as I agree with Betty, that your wife doesnt want to share and help but you do.....All that blah blah about being an adult etc....how about women who don't want men listening to their female problems with their female parts....Just Saying !!!!!! I never said I "solved" anyone's problems, but I did help by responding to dozens of posts that went unanswered by the women here. If you really took the time to read through all those entries you would have seen that. You find it strange that I was here all those years because you can't fathom a man who is not embarassed, afraid or ashamed to discuss female problems and female parts. I find it offensive that you can't even you the proper terminology. You remind me of when Oprah tried to discuss Vulvodynia on her show years ago and laughed like a little girl because she was ill at ease. How do you expect to have this problem "solved" if you can't even discuss it openly and include men in the conversation? The blah, blah, blah, is your escape from conversation that disturbs you and that is damaging to all women who suffer! Why can't you see beyond you specific situation and think of the women down the road who may suffer needlessly because nothing was done now? My wife is similar to you in that she is not at ease with discussing sexually explicit matters, not even with her gyno! I simply refuse to hide in the shadows, bury my head in the sand and hope no one asks my opinion. We either get over our fears and uneasinessness and have grown up exchange or vulvodynia remains a mystery. Why is it that erectile dysfunction can be discussed, shown on tv and solved? I believe because there is a double standard, problems impacting men get attention, but women have been condition to be ashamed of their bodies, afraid to speak out and demand help, to suffer in silence. You need to get angy, get loud, but not with me. What would happen if you allowed or requested your husband to speak about this problem you share? You do understand you share this? Would he shrivel up like the young man sent to buy tampons for his mom? I wrote in one of my posts years ago that discussing vulvodynia even with sufferers and healthy women, without men present is difficult. Most people have some curiosity, but they don't want their perfect world shaken, they don't want to think about what could happen. I realized this when I became friendly with several women who exercised at a gym I frequented. One of them was going through a divorce and she needed to share her pain. One of her friends once expressed that she was sick of hearing about her problems, one time when she was not there. I think this woman was really afraid of catching a divorce, just like you can catch a cold. She had or thought she had a good, safe marriage so all this talk of divorce was disturbing. Well a lot of women who do not suffer from vulovdynia don't want to think of the possibilities either. That has to change! Look at all that has been done to advance the treatment of Breast Cancer. Do you think all the progress would have been possible if women kept it a hidden secret? Please get over your fears, embarassment and taboos. Welcome men to the Forum, if you really want more of us. Men can be more than a necessary evil, which is my impression of how you see us. I don't know what else I can say to make myself understood. Can a closed mind be opened? Can you at least consider my opinions and thoughts without assuming some dark alternative motive? Are you satisfied with things the way they are right now? I'm fifty eight years old and my time is growing short, I think about all the loving couples in the future who might be spared this pain if we only do something now. I think about all the young women who have only know pain, who will speak up, speak out and help them? I wrote to Oprah many times requesting she give this subject more exposure, so did several other women here. Our society was not ready, maybe women were not ready, are you ready? I'm not just saying, I'm serious. Frank
CommentI can't believe this subject has been brought up again by women who won't even list their names. I'd be thrilled if my husband cared enough to post on this board on my behalf. We're all adults here, not grade school children. If you don't like Frank posting on this site, then don't read what he's written. Did you ever hear of freedom of speech? Frank, please post here if you want to. I, for one welcome your point of view since my husband has no interest in hearing anymore about Vulvodynia. Sue
CommentHello, Just wanted to update on my post concerning clotrimaderm + hyderm cream for fissures, it's been a real success, the fissures aren't as prominent and the pain I felt because of them is almost nonexistant. Hope this helps someone.
CommentFIRST to BETTY Im with you and Im sure lots are too cause many left the group because of male posts. As to Frank, GIVE ME A BREAK WILL YA....IM ADULT AS YOU CAN GET....JUST DONT NEED MALE RESPONSES ..AS FOR MY HUSBAND, HE'S THE BEST. IM DONE WITH YOU...AND I DONT GIGGLE ABOUT SOMETHING THIS IMPORTANT
CommentFIRST to BETTY Im with you and Im sure lots are too cause many left the group because of male posts. As to Frank, GIVE ME A BREAK WILL YA....IM ADULT AS YOU CAN GET....JUST DONT NEED MALE RESPONSES ..AS FOR MY HUSBAND, HE'S THE BEST. IM DONE WITH YOU...AND I DONT GIGGLE ABOUT SOMETHING THIS IMPORTANT
CommentTo Betty and anyone else who cares to comment: When I hear about ladies on here having sex and suffering for fear of losing their partner, it makes me feel like something is wrong with me. If I did get up the courage to have sex again, I know what would happen. I'd be in pain for days if not weeks. Unable to walk and burning stinging pain. I am terrified of going through that again. Does this make me a bad person? I still say that if men felt extreme burning on their penis for days on end after sex, they would not do it to please us ladies. I feel like this is a discussion worth having on here. I do wonder if most guys are as frustrated as Frank. There certainly are men with low sex drives. My bf says that he could not have sex with me because he'd get no pleasure from putting me in excruciating pain. I certainly could not get any pleasure if I were subjecting the love of my life to that kind of pain... the point is that women are willing to suffer, but I highly doubt that men would endure that kind of pain if penildynia were a condition... hmmmm... Am I a terrible person for not allowing my boyfriend to hurt me physically?
CommentFRANK - This will be my last post as I dont want to get upset when I read posts from a man who thinks he is helping those of us who suffer from vulvodynia by telling us about his frustration. You call that helping. I am not close minded. Both my husband and I are mental health counselors and deal every day with people who have much worse problems than I have. You said in your post that you have helped many women over the years. In my profession I have to be qualified and licensed to help people. Are you qualified to help women on this site. You can only give second hand informaion to us. The ladies who post have the same problem most of us have. Other than not being able to have sex with your wife and being frustrated because of it, what advise have you passed along. Instead of posting to a lot of vulnerable women about the lack of research on vulvodynia why don't you donate your time and money to help with research. How does a husband posting help our cause. Does it ever seem strange to you that no other husband posts. I don't believe that our husbands or significant others are ignorant of our problem and I for one have no problem talking to a man as long as he is qualified.
CommentTo Anon: You did say anyone, so here goes. First of all I am glad to see you write like an adult and use adult terminology. No, you are not a bad person for not wanting to endure pain. Lovemaking should be pleasurable, rewarding, exciting and bring you together, not cause pain! Many years ago when my wife had yeast infections I actually had an injury to skin on several place on my penis and I did not want to have sex. I hope that answers and confirms you thoughts about men enduring pain to have sex. Regarding a man's sex drive, unless there is some medical issue I believe we are designed by nature to be highly sexual. Testosterone fuel both male and female sex drive so it makes sense that men will be more driven with much higher levels. We are also more visually stimulated that is why so much advertising is geared towards sexual content. I hope in your specific situation you have found a young man( I assume you are a young woman) who is not only caring but who has a very low sex drive. I have never force my wife to have sex, or tried to make her feel guilty, in fact I have often refused to have sex because I know the outcome. I have tried to explain to her that if lovemaking caused me to have skin tears and pain how would she feel? Would she want to have sex if it hurt me? Everyones experience is different but as I posted a long time ago when a young woman asked if she should go through with an engagement while suffering from vulvodynia making intercourse impossible, if she were my daughter I would advise against it. Lovemaking, passion, sexual intimacy is usually what attracts couples and helps form a bond. My wife and I had that experience for years when we were younger so I have that to draw from. I also understand the nature of aging and the changes it brings. I wish you strength to live a good life with vulvodynia, but I also wish you the desire and intelligence to seek answers. Your boyfriend may be an exceptional man, however too many men disappoint even when the women who love them do not have your problem. Do not suffer in silence, and do not stay hidden in the shadow of this or any illness! Frank
CommentTo Betty & your Husband: I am sorry you have such loathing for a man who loves his wife and has helped women here. The fact that I do not have credentials to practice does not mean I cannot offer advise here that women have offered. I find your attitude extremely sexist and backward. Throughout my ten years of posting I shared such things as how to make and use boric acid suppositories to resolve or treat yeast infections, how semen can dilute the acidic flora of the vagina. I won't bore you with more of my useless advice, but it helped the women who asked. How sad that you don't want the support of a person simply because he is not of the same sex. Your eduction should have continued beyond your credentials. Your lack of response to my lengthy post which included breakthroughs in Breast Cancer diagnosis and treatment, tells me have are close minded to anything I have to say and anything I can offer in support of my presence here. Unfortunately wheter I am here or not, Vulvodynia remains. I actually believe you are a professional by your attempts to shut me up and intimidate me by suggesting I have no right to speak unless I have credentials. I have had conversations with doctors who tried to do the same thing when I questioned their authority. Sadly you probably do the same thing to people you treat. Why not stop acting like you are better than me or any man and welcome the support? I guess you are set in your ways and incapable of change. Frank
CommentTo Frank - Just a little correction to your post. My post was from me alone. My husband did not post so there was no need for you to address him. I am an adult and can manage quite well on my own. I am sure you have given helpful advice to some women over the years but you are wrong about credentials. I have corresponded with a lot of different women from this web site and read a lot of books on vulvodynia and one thing that the books recommend and the women wanted was to see a doctor that specializes in vulvodynia. Some spent a lot of time and money crossing the country to see a specialist. I am sure your advice was well intended but has anyone really been helped. It amazes me also how fast you respond to a post. Why don't you encourage your wife to post. We would love to hear her side.
CommentTo anon - In response to your post I just wanted you to know that you are not a terrible person for not having sex. Everyone has to do what is best for them. In my case I have pain whether I have sex or not. Having sex does not hurt too badly but for a week or so after it does hurt more. I don't know how old you are but I use Vagimen and it helps lubricate the vagina and that helps a little. Some of the women on this site must be worried now about their frustrated husbands or significant others. We could do without a husband posting about that.
CommentTo Betty: You still refuse to address the points I made in my previous posts regarding the advancements in Breast Cancer diagnosis and treatment due to more exposure. Yes, women were helped from the advice I offered possibly more than you could imagine. Many women posted that they could not afford gyno visits much less to a Vulvodynia expert. Some of these women lived in canada and australia. My wife works a full time job, takes care of her father's affairs as he suffers from demitia, exercises and go to many doctor visits regarding follow ups for her estrogen sensitive Breast Cancer. She was never interested in posting here and does not think it serves any purpose unlike myself. I think the exchange of ideas, information and the effort to offer a kind word and emotional support is important. I am retired, prepare many of our meals and work around the house and property. I am very disturbed at your atttitude towards me and your resistance to having other men participate here. You can't really expect the kind of research and break throughs for vulvodynia if you keep it a women's only, secret illness. What exactly prevents you from dropping your guard and welcoming a man's opinions and support? Do you hate men that much? I can't remember specifics over the years but I am positive there were many women posting with tears in their eyes from physical and emotional pain, often I was the only person to respond. I told them to not suffer in silence, to not be told by doctors that it was "in their head", to not have sex if it was painful. I know there is no cure for my wife's symptoms, but I see no reason for my daughters or anyones daughters to face the same fate! Whatever is preventing you from embracing my presence must be something beyond reason, something that should be examined and overcome. Why should you allow your fears or prejudice to interfere with what might be the greater good? I probably won't be posting much even though I have plenty of time, I find it frustrating and depressing to deal with closed minds and backward attitudes. Shocking that in this day and age, in this country where so many women sacrificed for equality, that we should have this conversation at all. Betty, why do you need to speak for your husband? I would like to know why he and other men don't participate? Is the subject matter to disturbing, are you to controlling, or is this just not a place for men? Invite him here, he may actually offer comfort to others male and female. Is that such a bad thing?
CommentTo Betty and all: I hope you don't mind me quoting your last post: "This will be my last post as I dont want to get upset when I read posts from a man who thinks he is helping those of us who suffer from vulvodynia by telling us about his frustration. You call that helping." I completely empathize with what you said up there. Hearing about a man's frustration with this, only adds more "fuel to the fire" (no pun intended). All of us on here worry about the men in our lives and their frustration. Hearing about it on this forum makes me feel HORRIBLE. I'm sure I am not alone. A man talking about his frustration on this forum is NOT HELPFUL. We all already are quite aware of that. I think it inspires fear and hopelessness in many of the "vulnerable women" on this website. I for one, feel pretty terrible when reading about a husband's frustration on this forum. :(
CommentAdvising a young woman not to go through an engagement while she is suffering from vulvodynia??? HOw is that helpful. That advice will lead a lot of women to despair. My sex therapist has dealt with many women with this problem, and she has encouraged me to get out and date. If not for her, I'd be taking your advice, Frank, and lord knows what I'd do... spend my life alone... there are plenty of women in the support group I attend who have become engaged and happily married in spite of vulvodynia. Please don't post any more upsetting statements like that. We Don't need it here. I worry how women will respond to statements like that. I REALLY worry... many are vulnerable and desperate and on the verge of despair. I even remember reading a post from someone who was suicidal on here. Choose your words carefully...PLEASE
CommentTo anon: More than fifty percent of marriages end in divorce. Marriage is a something to be taken seriously and to think vulvodynia will not add a difficult to impossible aspect would be foolish. I would give that advice to my own daughters out of concern. I think it's a great idea to date if you are strong enough to deal with the sexual complications and emotional toll that comes with rejection. I won't continue to post and I wish you and others who think blocking men from this site and the conversation of vulvodynia while at the same time assuming everything will magically turn out all right the best of luck. I happen to think it takes more than luck to get the required research such as with Breast Cancer. I also think it takes more than luck to have a successful marriage. Incredible that you want to date and possibly marry a man when you can't even tolerate a man in this exchange who is anon as well. Good luck, you're gonna need it. Fortunately my daughters will benefit from a Dad who is not afraid to openly discuss anything, and not afraid to give advice that may help even if it not what they might like to hear. I would rather see someone who is in pain and suffering from vulvodynia, seek treatment and not have to go through the heartbreak and strain of a relationship, but that's me. Good luck, you're gonna need it, Frank
CommentFRANK, your post to anon says a lot about you. To quote you "it is alright to date if you are strong enough to deal with the sexual complications and emotional toll that comes with rejection." Is this your idea of helping. Do you believe you are the only wonderful man in the world. Is that why you are really posting. Do YOU feel rejected. Your wife sounds like a wonderful lady. She is a cancer survivor, works and even goes to the gym while you have all this extra time on your hands and you have to fill it by posting on this web site.
CommentTo Betty: Yes, that is helping because it is truthful even if it is not what you want to hear. I suppose in your profession you lie to the people you are supposed to help because the truth might be painful? You continue to disappoint me with your sexist attitude. My wife is a great person, thank you. She may not agree with me but she would not shut me up as you are attempting. I wish more people would give the seriousness of marriage careful consideration, maybe that would reduce the more than fifty percent failure rate. Too bad you are incapable of getting over your prejudice and bad attitude towards men. You are a disappointment to myself and the women who need help here. Keeping men from this Forum and keeping this illness in the shadows where you avoid the proper terminology for body parts and speak in blah, blah blah to avoid confrontation speaks volumes of the person you are, not the person you should be to actually help.
CommentTo Frank and Dr. Glazer: I have tried many many treatments. I don't need someone on here throwing cruel words around. This illness is difficult enough. I come to the forum looking for support as do many others. I think that Frank is trying to be helpful, but it comes across as mean-spirited at times. This is not the forum for me. Let Dr. Glazer decide on the appropriateness of these posts. I for one cannot come to a forum like this anymore. I wonder where the lady is that was feeling suicidal. I noticed she stopped posting a while back. I was hoping to offer her some encouragement in my last few posts. Frank needs to be on a support forum for frustrated men who are married to women with vulvodynia instead of making people here feel worse than they already feel Thank you Betty for your support. I will go back to other Vulvodynia support groups on the web. This forum is way too distressing.
CommentTo Dr. Glazer: I have read and posted on this site for over ten years. During that time I have exchanged ideas and both given and received emotional support. I feel I am being both punished and bullied for not being a female, and for offering a man's perspective to questions asked regarding marriage and relationships. I will leave any decision on this matter in your hands. Will this Forum be reserved to professionals who can produce credentials before offering opinions and advice? Will this Forum exclude all men going forward. Will Vulvodynia remain a mystery illness, hiding in the shadows because of the very personal, private and sexual content? The advancement in Erectile Dysfunction and Breast Cancer exemplify the benefit of public awareness and involvement. Closed minds and sexist attitudes should be a thing of the past and not the rule of the day. I am just one of many men who could benefit and contribute to this Forum and the women who suffer from Vulvodynia. Respectfully, Frank B.
CommentTo Betty and Anon, if you don't like what Frank is saying on this site, then please go elsewhere. He doesn't need your permission to post on here and I would like to hear what he has to say. This is really pissing me off. In my opinion, this is the best Vulvodynia site I've seen. Dr, Glazer, I hope that you don't ban men from posting here. Sue
CommentTo Sue from Frank: Thank you for the kind words and support. I applaud your openminded manner. Clearly you understand the value of welcoming men to the Forum. Change is difficult to accept for many people who have been raised a certain way and grown to believe to fear any alternative. I post on another Forum with tradesmen where we discuss the trades, politics, the economy, and family matters. Opinions on these subjects vary and it is interesting to observe the wide array of personalities. I am disappointed I could not reach those who are close minded, I can't imagine how they don't see value in joining forces? I wonder how many loving, caring men have been scared away from posting by such people? Thanks again, I enjoy sharing my thoughts as well as listening to those in need, sometimes just being able to talk and know someone is listening is enough. Frank
CommentTo Sue - Just want to let you know that I already found another site for vulvodynia sufferers. I feel bad for switching because I really liked this site and got a lot of helpful advice from the ladies who post here. I think you have the wrong impression of me. I am not objecting to men posting but I must admit I have gone back over several years of posts and the only man I could find posting is Frank. Where can I look to find more than him. I also discovered that ladies objected to his posts back then and just recently returned to posting. I know am a very conservative person. I believe in marriage and believe in certain things being private. Posting to some man that I have no idea who he is just bothers me. My husband and I have male friends who are aware of my problem. Granted they are in the medical field. Some of what he has recently posted is not very nice. He is playing the male sex card. No need to respond I am out of here.
CommentLove is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. I hope we can remember this through all of our trials and tribulations as well as when we post on this site. It's sad to see all of this anger back and forth. We need to support each other. This is a support forum after all. Let's foster hope and perseverence. Blessings to all! :)
CommentTO FRANK: I have been reading and posting on this great web site for a couple of years. when I first started you were posting and even back then I thought it was weird. I am not closed minded. I am an engineer and work with men every day. I am married and have a wonderful husband. I remember back then when women started complaining about you posting. I was surprised when I checked this web last night and saw the same thing happening again. I was shocked to see how mean spirited you were to Anon and Betty. I support the ladies. You come across as the person who found a cure for breast cancer. I think Dr. Glazer started this web site for women with vulvodynia. Women suffering from this disease should not have to leave this site because of one man who considers himself open minded and God's gift to women.Your posting won't stop me from passing along anything new I find that might be helpful to another lady.
CommentTo Carolyn: You believe I think of myself as "God's gift to women"? Why is that? I care about my wife, I'm faithful and I'm concerned about the future of my daughters. Do you make that accusation because I was interested and bold enough to post here? I get it, it's the same old sexist badwards, close minded thinking that prevents open conversations about delicate topics. The same attitude that keeps vulovdynia in the dark while Breast Cancer, Erectile Dysfunction and other illesses get attention. I find ignorance insensitive. Most doctors would enjoy having a husband take interest and show support , although I have challenged some in the past and they don't like that. Go back ten years and read, read, read, there were plenty of women who did not object to my presence and honesty. Evil minds look for perverted reasons for my posting, they are incapable of accepting caring and goodness as motives. I lost a infant daughter to Infantile Progressive Spinal Muscular Atrophy many years ago. My wife and I were told there was no hope, no treatment, only death. I know Vulvodynia is not fatal, but why should it be kept a secret? There are many illnesses that have no answer, such as my recent diagnosis of meniere's disease, and that too is frustrating. Let me get this right, you want the support of husbands, but only on your terms. Myself and other caring husbands are not allowed to post here, are not supposed to speak of our frustration or depression because that is insensitive, we should keep quiet. How caring and open minded is that? I believe it is rude and insensitive to ignore the questions of a young woman pondering an engagment of marriage while suffering from Vulvodynia. The caring thing to do is to use your maturity and life experience and share even if it hurts. In general I think people rush into marriage and with a more than fifty percent failure rate is it any wonder? The caring thing to do or say is wait, take some time and give this careful thought. I think you and Betty and women who think like you, do other women a great disservice by insulting and attacking men who want to share. Yes, I'm frustrated and depressed at times, I'm also loving, caring and supportive. These are good, healthy things to understand unless you don't care about your husbands or how the loss of sexual intimacy may impact a relationship. I can't get over how Betty only shares with other "medical professionals", I suppose all other men are too ignorant or immature to understand or have such knowledge? For your information, there is no sight for loving men who care for their wives but cannot share intimacy. I looked into a site for couple who had sexless marriages and when I posted that I purposely avoided sex with my wife for fear of hurting her I was attacked. Turns out that the site was ninety percent women whose husbands neglected them for a whole host of reasons. I don't need to post here to relieve my problems, but this site seemed more active years ago when I did. Since I stopped posting I had hope it would be more active, that women would reach out and stir up public interest. Just the oppostive happened, weeks went by without new posts. I have been sexual with two women in my life and I married the second one. I have no regrets and no delusions of being God's gift. I do not deserve the insults, and I suggest you turn your attention and focus your energy towards the illness. This is our time to either make a difference or do nothing, how unfortunate if you choose the latter. Frank
CommentFrank, you responded to my post a couple of years ago and I found it very helpful. I am trying to consider both sides of what is going on at the moment. What I think is that some women have (and rightly so) heard so much on the news about other web sites where a few men prey on women and unfortunately think all men are like that. I am sure they will run into what they consider a problem on those sites as well. Too bad more men don't post. Did you ever consider starting up a web site for the men who have to deal with women like us. It would be interesting if women could resist responding. God Bless!
CommentTo private: I am very happy to know my words were of some help. I don't blame any woman for being cautious, suspicious, or careful. I have warned my wife and daughters of perverts videotaping changing room, and bathrooms. Guys who put date rape drugs in your drink, and other warnings. Granted the world is a scary place at times, and the Internet is loaded with sickos. My twenty three year old daughter has said she will not live in fear and refuses to alter some of her freedom of movement. I don't know how other sites work, but unless you cross the line and volunteer personal information which would allow you to be contacted, what exactly is the risk here? The bad person might disguise himself as another woman to gain confidence, I'm honest with who I am in hopes that my perspective and thoughts might enlighten, comfort or be of some other help. There are plenty of adult sites where people can get some sexual thrill, this is not the place. We are different sexes with specific differences, but we share more than might be imagined I have suffered from intestinal adhesions for over thirty years. The pain from a temporary blackage is excruciating, women have compared it to labor without a baby. I have also had a kidney stone attack requiring synthetic morphin. I know pain, I know the euphoria of when it is absent after an attack. I don't know the specific pain you ladies experience, but I am compassionate similar to how I imagine you would be to the men you love if they had a specific male only condition. I don't see why we can't get beyond the differences that separate us. Don't let the bad people stop you from embrassing the good. Frank
CommentTo Frank: You have posted advice to me way way back- several years ago, and I was grateful because no one else responded to me, and I was extremely distressed at the time since I had just received this diagnosis. I felt that your words were comforting and helpful. It is because of you, that I got up the courage to date again and work on this illness at the same time. Thank you. Unfortunately, I am not better as far as sexual intercourse is concerned, but I'm engaged to a wonderful man, and I credit your words to my search for emotional happiness. I am sorry that Anon and Betty are so upset. I can understand that they may be upset because of the recent exchange of words. You are a good person Frank.I think you have been falsely accused of being "god's gift to women". There is no evidence that you feel that way. At the same time, I can see that Anon is suffering and is very sensitive. It seems Betty is sensitive as well. This illness makes us feel very vulnerable, and sometimes people say things they don't mean. I hope Anon and Betty come back. And I hope we can all pull together and support one another. Lashing out at each other is not helpful. And I suppose hearing about a man's frustrations only makes women with this illness very upset, and so they lash out. It's understandable because I know it was one of my fears, and us ladies feel helpless, scared, lonely, and vulnerable. Frank, your posts from years ago helped me immensely. I thank you, and hope that you can offer the same kind of support to women here again. I don't think men should be banned from this site, but I think it's important to be careful what you say. There is no reason for anyone on here to cause anyone more suffering. Kindness above all is what we all need to observe. We need to put ourselves in other people's shoes before we write. I hope you stay, Frank, and the other ladies (anon and Betty) and you can make ammends. Life is short, and kindness is the only medicine that can heal in a support group like this.
CommentPrivate, I'm glad that you appreciate Frank as much as I do. Frank, I hope you'll continue to post on this site. Dr. Glazer wants that also. Sue
CommentThese last few posts have me thinking. To change the direction of this conversation, I have a question. There has been much talk on here about what people have tried (meds, pt, surgery, etc). The truth is that some people find relief or are even cured, but most women still have some vulvar pain they are dealing with, even after years of trying many things. The question then becomes this- how do you cope emotionally? I haven't seen much on this topic, but it is very important. Yes, we need to talk about what works physically, but the truth is that many of us are suffering emotionally. So, my question is this: What has helped you emotionally and spiritually to deal with this illness? For me, it has been my V friends- those I've met in person and those I've corresponded with online. My fiance has also been supportive and understanding. But prior to meeting him, I gained much strength from my V friends. Meeting people who've struggled with the same emotional pain, and meeting those who've overcome and learned to live happy lives in spite of this illness has been inspiring. I also bought a meditation cd for vulvodynia sufferers, and that has helped me through many a sleepless night. So, again I'd be interested in what has helped you the most on an emotional/spiritual level? How have you learned to cope? I think that this will benefit all of us- especially those who are newly diagnosed. Love and light to you all! :)
CommentTo All: Please scroll back to see Miriam's post, I just wanted to thank private 2 and say a few words. I am so happy to have been of help when you were in need. I apologize to anyone I have offended or made ill at ease. I understand the lack of patience when you are in chronic pain. This is a difficult way to communicate because we can't see the other person's expressions or tone. I really had no intention of frequenting this site again with my posts. I read here once in a while to see if anything new is being discussed such as treatments and to see if there is anyone who is not getting a response. I won't continue to post unless there is a specifc request for a man's opinion, it was never my intention to push anyone away from support. I hope those who were offended by my presence will change their minds someday. Invite the men in your lives to share their thoughts and support, Someday. Frank
CommentI think Frank is right. I've spent 10 years trying to cure this illness- I've tried about 20 different therapies. I'm better only as far as daily activities is concerned. I have been through relationships that have ended as a result of this. I have to make a decision now. Do I keep plugging away? Do I resign myself to a life in a nunnery or do I take my life? I will not go through the pain of dating anymore. Testosterone takes precedence over love. Below is a quote from the research. I used to pray for a cure- now I pray for God to take my life. I am no longer a human being. I am a walking, broken vulva. The men in my life have taught me that. Frank is right and so are other men I've met. I pray for god to give me the courage to take my life. The pain is no longer bearable. ________________________________________________ "Vulvodynia interferes with daily functioning, such as sitting walking and most other physical activity. It often affects one's ability to engage in sexual activity. It can impair one's ability to work, and participate in a social life. These limitations often lead to depression and thoughts of suicide"
CommentTo Desperatado: If you are going to use my words as gospel then please be clear on my message! You don't apply a permanent solution to a temporary condition. Life is short and precious, and worth living and enjoying without intercourse. If intercourse causes pain then don't have intercourse and don't let anyone tell you that makes you less of a woman. A man who can't get an erection is not less of a man, he is simply limited in that one area. Couples who can't conceive are not bad people or less in love. I feel that my wife's lichen's sclerosis which causes the skin tears and pain is a natural condition along with menopause which thins the skin and causes dryness. Her nature right now is to not have vagianl sex or suffer the pain and damage. My "nature" is still sexual due to my hormones and health. I looked into medication to reduce my testosterone and kill my sex drive. There is such medication available from europe, but one of the side effects is severe depression. Why would I want to risk killing myself as a solution to a natural condition? It makes no sense. Life is well worth living without intercourse, billions of people do it everyday. Consider a life without pain through better pain management. Consider all that life has to offer and all you might contribute without the pain and depression of trying to be or do something that hurts. I am too frank with my words, but that's who I am. I constantly take stock of my behavior and actions, so I know my limitations. Sure, I get depressed not having a active sex life, that is natural and understanding. It does not mean I give up on life or suggest my wife should kill herself. How could you possibly in your worst pain read that from my repeated advice to not do something that causes damage or pain in order to make someone else happy? You don't need a sex therapist, in my opinion you need pain management and someone professional or spiritual to help with changing you mindset. My infant daughter died from a terminal genetic illness. I was helpless to change her fate, I am not helpless to tell you there are options. Live, not for anyone but yourself and live a good life beyond your pain. Love, Frank
CommentWow, this forum hasn't had this much action in a long time. Hi Miriam, Have you ever read the mindbody prescription? That book has greatly helped me deal with the physical / emotional aspect of v... placebo effect? maybe but I do feel better.
CommentDesperado, You are not alone. Please don't give up on life, it has more to offer than vulvodynia.
CommentTo cinder: That sounds like a good book! Do you know the author? To Desperadato: Taking your life is not the answer. I'm glad that you've gotten your pain down to a manageable level overall. There are good people out there. Just believe in yourself and good things will follow. You are more than your illness. Don't let anyone tell you anything different. They are wrong! you have much to offer this world. Life is full of surprises. Stick around and I'm sure good things will come your way. Keep posting on this site, we are all here to support you!:)
CommentTo Miriam: It's from John E. Sarno
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CommentTo Desperatado, your feelings right now is the reason why men should not post on this web site. I am referring back to the posts that a husband sent to anon and Betty. He says that it is a geat idea to date if you are strong enough to deal with the sexual complications and emotional toll that comes with rejection. Rejection is something a lot of us deal with in our every day life. You seem to have your share of it with the men you dated. Not all men will reject you and I am sure there is a wonderful man out there waiting for you. Committing suicide is not an option. Those of us that are married sometimes live with the fear of losing our husband to someone who can satisfy his sexual needs. The last thing we need is a husband posting that we are not strong and open minded enough to face the truth. No body likes rejection. If you can get through your every day chores that is a plus. I like to look at the glass as half full instead as half empty. We are all just dealing with our vulvodynia and pray every day that a cure will be found real soon.
CommentTo Private, Betty or whoever you are: That husband's name is Frank and I have been on this site for ten years. Where has your husband been? Obeying you to stay away no doubt.Why don't you go back and read my post to desperadado, there are some good things in there. I am sorry you do not trust your husband and think another woman who can satisfy his sexual needs is reason enough to leave you. Statistically since more than half of all marriages end in divorce vulvodynia is hardly a reason, perfectly healthy women are at the same risk in my opinion. You either are married to a good man or a cheat, which is it? My wife has absolutely no fears that I will cheat, I don't excuse bad behavior including the breaking of marriage vows. My advice which I stand behind is that single women suffering from Vulvodynia would be wise to take care of themselves and get to a good palce without the complications of a relationship including marriage. You are purposely trying to draw married women into that heading and that is a mistake. I must have posted a hundred times or more that married women should not fear their husbands staying because of this illness, but you are too busy bashing me for being a man to have read those posts. I agree that nobody likes rejection, so why would you advice a woman who might be suicidal to pursue further rejection and failure when she is in crisis? I sure hope you are not a professional, I would hate to think what advice you would give the people in your care! If you really like to look at the glass half full then stop worrying about your husband cheating and be happy if desperadado can get beyond needing a sexual relationship in order to justify living. God help the closeminded and cruel. Frank
CommentFrank - I had no intension of posting on this site as I stated in a previous post but after the bashing I got from you in your last post I just want to set the record straight. I take offense to you assuming I was the person who posted to Desperado. I just want to make it clear to you that I ALWAYS use my name when I put anything in writing. I know I have lashed out at you but I was never afraid to let you know that my name was Betty. You want to know where my husband has been for the last 10 yrs. We are both counselors in a mental health clinic, work long hours, it's a non- profit so we don't make big money and in spite of my vulvodynia I love helping the less fortunate than me. My husband and I are very happily married and have 5 beauthiful children. He doesn't have the time nor the energy to cheat. I am also very happy to be able to have sex more often than most of the women who post here. I feel very blessed to have had my kids before I was diagnosed with vulvodynia. I correspond regularly with 3 other ladies from this site and when we have bad pain days we e-mail back and forth which helps keep us from going insane. I don't see any reason to get my husband involved posting. I am the one with the problem and I am the only one who can describe how bad my pain is. I believe this site should move forward from this controversy about a man posting and start dealing with the real problem. I have moved on.
CommentThank you Miriam, private, and cinder. I am trying to keep my head above water. I have been trying for many years. I can't get past wanting a lifetime companion. If I can't find someone, I'd rather not live my life. I am trying to stay positive. I am generally a positive person, but years and years of this are pushing me over the edge. Thank you for your support... I will try to hope and stay on this earth. If it doesn't work, I will make other plans.
CommentInteresting how the name used in the first suicidal post was "desperatado", which is the one I responded to. The name Betty referred to was "desperado", and the next post was by desperado! At least be consistant with the spelling if you are playing games with such a serious issue. Betty I refuse to believe you are who you are or actually work at what you have suggested here. I can't imagine any intelligent and well intended person pushing a presumably suicidal woman who suffers pain during sex to keep self inflicting. Where is your common sense if not professional smarts? You really think a woman needs a man and sex to justify living? Rather than tell her to seek professional help you suggest the right guy is out there? Heck, tell that to all the women who do not have vulvodynia and have not found the right guy, or who thought they were happily married. Your poor husband, how shut out he must feel along with the other men afraid to share for fear of being attacked. Desperatado, or whatever your name is, if you exist, get professional help and stop thinking you need a man and a full sex life to be happy and live a good life. Please, to any other lady or young woman in crisis, get help, talk to loved ones, friends, clergy or a professional who will offer alternatives. God help the closed minded and cruel who think they can stop progress. Frank
CommentI've spent 15 years and thousands of dollars on the top specialists in the country. I am better- virtually pain free during regular activities. Bike riding and sex are excruciatingly painful though. I have run out of options. The only thing I haven't tried is surgery. And I'm terrified that it will make me worse. I have heard horror stories of women having more pain after surgery- and permanent. And my only reason for having surgery would be for a man. I wouldn't put myself through it for me. I feel okay painwise, except for the activities mentioned above. I appreciate everyone's encouragement here, but I think Frank is right. If I can't fix this, I need to learn to live a life without companionship. Men are attracted to me, and relationships last a long while. However, eventually it seems that they can't handle my condition. I really don't see any way out of this. I don't want to be alone, but there doesn't seem to be a choice. Women who developed this condition after being in a LTR, are in a different position. I can't think of a way out at this point, except surgery or suicide. Because I cannot accept a life alone. I can't. And there are no more options to try. Perhaps a life on narcotics in exchange for a husband. I've learned that my personality and love don't seem to matter after a while. To men, I am a broken vulva- damaged goods. I could spend a lifetime trying new things. I already have. I can't do it anymore. Frank is right. He confirms what I already know. I need to be alone until I get better, but the odds are against getting better. I have to be realistic. There aren't any other specialists for me to see at this point, except the guy who wants to CUT. I just can't do that. I am too terrified. I'd rather die, than have him cut me.
CommentI am a real person. I don't want my name on the internet for anyone to google. I don't know who Betty is. I misspelled my name as "desperadato" because I was an extreme distress that day and didn't realize that I spelled the name wrong. I'm already seeking professional help in the form of psychiatry and therapy. I've been seeing both for years. People don't understand- it's not a quick fix. You wouldn't understand unless you walked in my shoes. Prior to this diagnosis, I was a happy and healthy person. After diagnosis, my life has been a rollercoaster ride. Thank you.
CommentTo Desperado: I wanted to respond to your last post but I'm having some health issues myself. There are many healthy people who experience the loss of a sense such as sight, hearing or speech due to illness, disease or accident. People suffer horrific loss resulting from the aforementioned and war, but they rehabilitate and find new meaning, sometimes better menaing to live. I wish my presence here and well intended words were thought of as offering a different perspective to some who are trapped by their pain. We should not be defined by our deficits, the man or woman who has lost a limb, or sight is still a valuable person, still deserving of love and caring by others,still capable of enjoying life and contributing to others. Sometimes we need the words of others to help us see beyond our situation. The losses I have been speaking of require a period of adjustment, so we can adapt. Life involves loss and gain, it is how we respond to these events that define our existence. When my daughter died my wife and I mourned, but I told her we are good people and deserve to go forward and have good lives. I work at doing the same with the loss of intimacy. I am honest and open in saying it is not a simple, easy or painless thing to do! I struggle to balance the loss against all the gains life offers. Please, seek help with your pain and accept the brilliance of life outside of what vulvodynia has taken. Love, Frank
CommentFrank...I'm with Carolyn on this one. I remember back when you promised you'd refrain from posting on this website because there seemed to be misinterpretations of your comments. And, being the benevolent soul that you always profess to be , you were biding us a fond, but sad, farewell . And BAM..I check in , and you're back. Interesting! Very interesting!!! I've got some advice for YOU. I recall that you said you were of Italian heritage. ( You were assuming we cared about this tidbit of information as we lie writhing in pain.) Take a couple of months off from all the turmoils of your life,sickness, vulvodynia,etc., and visit the homeland. Go alone. Give your wife and yourself a break. DON'T take your laptop. Repeat this mantra.."What happens in Italy, stays in Italy." This is a win,win,win, idea. Your wife won't feel compelled to have sex with you and can rest. You can relax and do what you will. And, you"ll be so busy smelling lemon blossoms and drinking Italian wine, you won't be inclined to post here. Have fun.
CommentTo Sally: Sorry, I'll be staying right here. Now if you can inspire some positive change to the site, I'll be glad to take a break. I suggest every husband and boyfriend start learning, posting and sharing in the fight for public education and research. See if get the close minded here to do what those with Erectile Dysfunction and Breast Cancer did, make a change for God's sake! Seriously, Frank go to Italy? I can't stand Italians and if you forgot I'm a married man. I take my vows seriously or else I would be cheating and divorced instead of sharing. Sorry Sally, you need to step up and be heard. The doctors need to know of your pain and so does the public, they need to know you demand research and answers! I'm on your side, now get busy and stop all this foolish talk of me leaving. Love, Frank
CommentFrank...I knew it was a stab in the dark with you. You're like the proverbial tick. You can excise it from the skin it burrows into, but it leaves an unending malaise behind. Lucky us..Frank is our champion. You must be the new Oprah. Thank goodness there are other support sites that haven't been permeated by your dribble. I'm off to those sites, pronto. Oh,and Frank, not so politically correct..."I hate Italians."...on a public site, no less!! Not smart. Doesn't take much sparing for you to show your true colors , does it? Love, Sally
CommentSally, you're too easy! I'm not cool for saying I hate Italians in a joking manner which you can't pick up on, but you are a cool person for suggesting I should cheat on my wife? Good idea you find another site, you clearly have nothing of benefit to offer here. Much easier to attack and insult me than communicate with Oprah, myself and a few of the Forum members tried and failed. Have you at least tried or the extent of your efforts to hurt someone who is also in pain? I suffer a loss you would not understand or care to imagine. So simple for a person like yourself to dismiss the emotional distress of a man, so old fashioned in thinking, so sexist on your part. Let's see now, I should suck it up, be a man, keep quiet, or am I supposed to have feelings, be open, share my thoughts? Sure is confusing to be a guy these days. Go ahead and run away, you did your damage, had your say. How about the women who never got a response when they posted, where were you and the other feminists trying to keep this a women's only place? I suppose it is easier to ignore my thoughts regarding public awareness regarding the advancements in Erectile Dysfunction and Breast Cancer and just attack blindly? You would be lucky to have me in a position of power instead of Oprah! I would not be laughing at women in pain, I would not be afraid to say vulva, or clitoris. They are not dirty words. Grow up and accept me, accept men as partners here. Don't take the easy way out and leave. Teach by example that nothing gets resolved by keeping secrets. People remain ignorant and problems persist in the absense of open conversation. What exactly do you fear, or are you just lazy? Do you have daughters? Do you care for all the women who come after you and might suffer needlessly? Frank
CommentSally, thank you for your support. Frank had the audicity to tell one woman that he did not believe anything she posted. Like she has to prove anything to him. Are all our husbands stupid because they don't post on a site for women suffering from vulvodynia. How sick is that. And now he hates Italians. I am Italian and proud of it. Frank is living back in the Al Capone days. Doesn't he know Columbus discovered America and he was Italian. That statement was not the only off the wall statement he has posted since he came back. Lucky us, as if we don't have enough suffering in our lives. Frank go to Italy - don't wish that on those nice people and besides he is a married man, it would not be safe for him.
CommentCarolyn, really now! I don't hate Italians the same way Sally doesn't really want me to cheat on my wife to get me off this site. Didn't Sally just say this was a public site? Well, is it open to the public or only women? You can't have it both ways, and if you were open minded and progressive and trusted your husbands to be of help you would welcome them here. I'm starting to think your closed minds will allow vulvodynia to hurt more and more women needlessly. You might think I hate Italians because I was thinking of a smart remark to a stupid suggestion, but I'm convinced you don't care about the future of this mystery illness and the delay of treatments and a possible cure. By the way my wedding song was the theme to the godfather, "Speak Softly Love". I have never strayed from those feelings, and my love will never allow me to give into bullies, male or female!!! Frank
CommentFrank, just ignore the women who are so negative about your posts. I guess they have nothing better to do with their time. My father died this morning and I came here tonight to take my mind off of my loss only to see that the same women are being ridiculous with their far-fetched ideas. Sue
CommentTo Sue from Frank: I am very sorry for your loss. I hope you have loved ones close to ease the pain. My father passed a few years ago after several years of age related leukemia. I often told him I loved and repected him, there was nothing left unsaid. I appreciate your openness and support, I wish I could return the kindness. Sue, it's hard to say if these are differetn women or one in the same. I don't see Vulvodynia as a women's only problem, same as Cancer or Erectile Dysfunction impacts more than just the sufferer. I really had not intended to return to posting, but it's upsetting to know nothing is being done, posts go unanswered, I wish there was a open Forum for the loved ones of sufferers, men and women alike, but there is not. I'm gonna take a break for a few days and see if the focus and energy changes but I doubt it. These women speak of their husbands and if they are obedient pets or some kind of objects to be kept in their place, far from here. God forbid these men be allowed to share, imagine what horrible things might happen? Probably better if they keep their frustrations, thoughts,fears or concerns bottled up where they can cause a heart attack or disease. Where have these women been that they are so guarded in their thoughts, so unwilling to move forward? Sue, I do wish you peace and healing with your loss and with this illness. Love, Frank
CommentHello, I am a 25 year old woman suffering from this condition for 2 years. Although I have never posted on this forum before, I have always found great comfort and ease from reading the current and archival guestbooks. I rely on this community of women to put my condition in perspective with my life so I may have a glimpse of hope that I will be cured one day. However, I have recently began to feel very uncomfortable with the overbearing male presence on the current guestbook and feel like I need to express my thoughts because I utilize this site to understand the physical and emotional symptoms of this condition from women only. I hope that the women who are against men posting on this forum can look past the male posts by ignoring them, rather than replying directly to them. This will thus create a flow of conversation about our condition rather than a bickering fight that does not help any women, like myself, who read these posts and rely on them for emotional support. Thank you.
CommentTo jump start this from the last post, does anyone have any experience with taking elavil for pain relief and constantly having to increase the dosage every few months? My pain has significantly decreased with elavil but returns exactly 2 months after increasing my prior dose. This has been going on for 10 months and I would like to hear if any women are also experiencing this.
CommentFrank, thank you for your kind words. I really appreciate you and am glad you are still posting here. I'm sorry about the loss of your dad too. It's hard to get through the death of a parent and now both of mine are deceased. I hope you have a nice Sunday, despite what's going on here. Sue
CommentFrank, I left this site a couple of years ago because of your posting. I check back occasionally to see if I can learn of a new treatment and must say my heart fell when I saw your name again. The site has gone from no action last time I checked to a war zone. This site is promoted as a site where women with vulvodynia can find support and pass along treatments that help them. I have never read a post from a woman who does not have vulvodynia. If a woman without this awful disease don't seem compelled to post why do you feel you can be of help to us with your LONG and BORING posts. I think you are a man hungry for love and obviously not getting any from your wife and daughters. You are seeking out vulnerable women on this site and love to use words such as sexual dysfunction, breast cancer, vulva and clitoris. Instead of telling the ladies who object to your posting that they are closed minded why don't you ask yourself what your intensions are. I this your way of receiving sexual gratification?
CommentTo Jackie: Sorry your heart fell when you read my name and not when you learned not much has been done to help sufferers! I'll answer all your questions and comments and hope you are adult and open minded enough to accept my comments. Perhaps women not not affected by this illness do not post because there is very little public awareness, or because they do not have a loved one who sufferes? I do! I feel I can be of some help because I have read posts to confirm just that, some recently. I am not seeking out vunerable women, and why are you ill at ease with words such as clitoris, vulva and breast cancer? Your uneasiness with proper vocabulary disturbs me and tells me you are not a helpful person with this cause. My intentions are to be a voice for all the men who love women with vulvodynia, my intentions are to give a man's perspective so that ignorance does not prevail! My intentions are to inspire the lazy and closeminded that shuting men out and keeping this a secret will do more harm than good. My intentions are to convince you and others that this is about more than just yourselves. There are generations of women to come who depend on brave, standup women now to take action! Your last comment was completely ignorant and not even worthy of an insult. I do not enjoy sexual gratification in my life, not here, not anywhere. My sexual gratification used to be from an exchange of intimacy with my wife, but that is no longer an option. If I was a selfish, lazy, self centered man I would not be here, but you can't fathom a man of that nature. Your dirty, suspicious mind only knows the mistrust it was taught, and that is a flaw that cripples you more than this illness. Your mean spirit is disgraceful. My posts may be boring to the ignorant and hateful but I'm positive they have been helpful and reassuring to others. Why don't you consider that you are wrong and apologize for your horrible comments? Learn to use proper anatomical vocabulary without cringing and stop thinking because this is a site for women who suffer from vulvodynia that it should be closed to the men who love them and want to learn, share and help. Vulvodynia will not die with you, it is not your personal disease, unfortunately it will live on and that is not alright with me. Did I make my intentions clear or are you still confused? Is this just another long winded, boring post by "that" husband? Try putting a little faith into a stranger for a change and not just the people in white coats with credentials. I am a good husband, a good father, and a good person. Don't think you can frighten me by insinuating I'm a pervert or creep. If I ever had the opportunity to be on Oprah or any truly public Forum, I would not hesitiate. Frank
CommentTo Private..re: elavil I, also, have had to up my dosage of elavil over time. You get immune after awhile and it takes more to calm the affected area. I got scared taking such high doses and having to increase in order to be somewhat pain free. So, my doctor put me on neurontin (sp) also. She wanted me to take 1600 milligrams a day..but, I calmed down on 900 milligrams. Now, I take 40 mlgs. of elavil at night to sleep and 3 doses a day of neurontin, 300 mlgr. at a time. Two summers ago I was doing so well, I tappered off the neurontin. It was a BIG mistake!!!! I was in agony within a month. So, right now, it is the two drugs for me. Without them, I'd be dying of pain..can't walk, wear underwear, slacks..etc. With these 2, at least I can function somewhat normally..Notice, ..I said SOMEWHAT normally. No bike riding,,no penetrative sex..I'd be in the emergency room begging for a lethal dosage of sodium penethol.
CommentJackie....Your last post...Right on!!!!!!! I echo your sentiments on that "topic" exactly!
CommentPrivate, I have been on Elavil for approx. 7 yrs. My dr. started me on 100 mg from the beginning. It was great for sleeping. After 7 yrs. I notice it is not doing what it used to. As long as I slept during the night I managed to get through the day with xanax. I am slowly weaning myself off xanax and that might be the reason I am not sleeping as good. One doctor I went to wanted to replace the elavil with Neurontin. I was scared to start on it when she said I could keeping uping the dose to 3600 mg. I know that 100 mg of Elavil was too high to start with because a couple of times I got up at night I fell. Now if I have to get up I make sure I am holding on to something. Does the Neurontin help with sleep? The Elavil does nothing for my day pain. I am glad the combination helps you. I will definitely talk to my dr. next time I see her. I have seen several specialists over the years and none of them seem to have a plan of their own. Its like they don't want to change anything the previous doctor recommended. Very frustrating.
CommentI've been reading these last few posts, and quite honestly, I am appalled at the conversation for the most part. It's obvious that Frank has deeply upset many women on this forum. Women who are suffering and in pain and looking for support. However, there is no reason to start lashing out at him about unrelated things. The truth is this, this is supposed to be a safe place for women to vent, discuss treatments, etc. It is not a place for such drama. I correspond with a number of women on here, and they have "jumped ship". Off to forums where they can get support. They have enough of men in their lives making them feel badly. They don't need it on this forum. Dr. Glazer is a wonderful man, and he created this forum for us women to commiserate. It's not that Frank is a man. Or Italian. Or any of the other ridiculous insults that have been hurled at him. There is only one important fact: he is upsetting women on here who are in deep emotional pain. Whether or not he means to or not is not the point. The point is that he IS. I for one cannot even read his posts, lest I fall into despair. I frequent a group where I can feel safe. And I'm sure that's why many other women have left. This forum obviously is NOT being monitored. I wish all the ladies on here healing and love and emotional support. Please don't get drawn into this drama. It's not worth your emotional health. Frank has his own issues to resolve, but this is not the place for it. Women are leaving in droves. I hope you find some kind of relief, Frank (if not in a forum, perhaps therapy). We know you mean well, but you are upsetting many women. It's not necessary. We all know how frustrated and depressed some of our partners are. We don't need a double dose on here. It makes us feel doubly low. No need to respond to me Frank. I cannot read your posts. I skip over them for my own sanity. May god bless you, Frank. And bless all the ladies suffering from this condition. Amen
CommentTo praying for everyone who won't read this" I'm praying for you as well, I pray you appreciate my presence here for over ten years giving helpful advice to women who were otherwise ignored. I pray you and other women who believe I do not belong here and that this is something to be kept among women only, the realization that it needs public awareness and exposure. I did not spend countless hours here to hurt anyone but the dirty, closed minds will always find it easier to believe otherwise. I believe in prayer, but I also believe in action, the kind of action that helped Breast Cancer awareness, early detection and treatment. I don't see how any intelligent woman could find anything I said offensive after all these years, but the fact remains women are leaving here in droves! Imagine that droves! I didn't think there were that many women who even posted here. I'll shut up now, sorry to disappoint those who think I find this somehow sexually gratifying. May God Bless you all, including the ones who think vulvodynia must remain quiet, including the ones who agree with some men that women's private parts should never be spoken of in public for fear of offending. Personally I think you will need more than God's help to understand the importance of inaction. I only hope somewhere away from here, there are women fighting for attention, to be heard, for funding and research. Remind the women leaving in droves, that there will be future generations of women suffering in droves. I will not be finding any relief not here and not in therapy. I would like a little peace of mind to know the enemy is Vulvodynia and the doctors who doubt your pain is real, not a loving husband and concerned father. You know I stopped going to church after two sermons, one about how divorce is evil so people who divorce are evil. The other sermon was about how women should obey their husbands! I could not believe how the women just sat there and listened obediently. I guess that is a female thing, patience with authority. I won't be a part of that old sexism, but my wife was willing to skip over the hurtful stuff, just like you are skipping over my posts. Some women are just not ready to join hands with men, not ready to stay and be heard. I'm positive it is a lost opportunity for good, but clearly my efforts to convince some here otherwise have failed. No need to reply, I'll take the easy way out and refuse to read anything to the contrary. Amen, Frank
CommentTO JACKIE, You have said what I have not had the guts to say...I believe that everything you said is true.....Why does a MAN post here...I have never seen a MAN post on a women's site with this terrible THING we have. You are right on target, and Frank no one is trying to scare you with tactics.. It is disgusting to me and believe me I am not a PRUDE nor am I closed minded, narrow mineded or any other dumb over used adjective. Where is you poor wife....She is the one with the problem not YOU....Get off so women can feel at ease.
CommentTo Terrible: Obviously you have not been reading here for the last ten years, or you would not be surprised by a man's presence. Why am I here? Read back a few posts unless that's too difficult? Why do you need someone else to speak for you? You seem fine now, I'm proud of you. What sort of abusive hell were you raised in that you did not feel right telling me how you felt? This is horrible! My wife is not poor, she is loved and supported. Now if you really are upset, do something about vulvodynia! I pose no danger, no harm, no problem. Get your mind right that the problem is your fear to speak out. I strongly suggest you and the other misguided and confused , reread my last few posts. Take action now if you give a dam about the future. I'm some text in hyperspace, the enemy is the pain and damage of inaction regarding this condition. Now you have a choice, that the easy way out and keep up these baseless posts, or do something of value. Do something to be proud of, not something to be ashamed of. Are you really upset that Erectile Dysfunction got such attention and publicity while Oprah laughed at the word vulvodynia? Guess not, your biggest problem, fear, uneasiness is an old married man. Amazing! Ever think for a second that Dr. glazer had hoped this Forum would be used to organize a movement? No. keep it amongst yourselves and see how much gets accomplished. Frank the man with the poor wife. NOT! Where are your poor husbands? Oh, that's right you shut them up and shut them out. Great marriage idea.
CommentTo Sally and Kelly, THANK YOU for responding! I appreciate you taking the time to do so. I have been on elavil for 1 year, and every 2 months I have to up my dose by 10 mg to get rid of new pain. The funny thing is, my beginning, starting dose of elavil cleared up my non-provoked pain for the most part (aka pain from walking, sitting, wearing pants and underwear, etc) and those symptoms have never returned. It is only provoked pain (from penetrative sex) that slowly increases every 2 months until I go onto a higher dose of elavil. I recently switched from elavil to nortriptyline because of the sedating side effects. Has anyone had long term success with nortriptyline? Sally, has your doctor specifically told you that your body gets "immune" to elavil? or is it that your pain has just continously increased? What was the lowest dose of elavil that you were on where you were pain free or "somewhat" pain free? Kelly, did elavil help you at all in the beginning when you were prescribed it or have you always had pain despite taking the medicine?
CommentTo Frank: You just wrote today that you would cease posting on this forum (when you said you would "shut up"). Please keep to your word and not post, even though you already have again....
CommentI have another question that I hope some ladies can help me with: Before I was diagnosed officially with vulvodynia, my symptoms started after I used Monistat and a prescription anti-yeast cream to get rid of a yeast infection that lasted for 3 weeks. I had a nasty allergic reaction to both medicines, so I was prescribed a fluconazole/difulcan pill and it took care of the yeast infection. After my yeast infection cleared, my vulva became EXTREMELY inflamed after having sex every time. It would swell around my vagina opening/vestibule to the point that I could not see my vagina hole anymore when looking with a mirror. This would begin immediately after sex and would last for 6-12 hours- I could sit with a mirror and literally watch the swelling occur. Has anyone's vulvodynia began like this where huge amounts of swelling/inflammation occurred around the vestibule region after sex? Please respond!
CommentI have another question that I hope some ladies can help me with: Before I was diagnosed officially with vulvodynia, my symptoms started after I used Monistat and a prescription anti-yeast cream to get rid of a yeast infection that lasted for 3 weeks. I had a nasty allergic reaction to both medicines, so I was prescribed a fluconazole/difulcan pill and it took care of the yeast infection. After my yeast infection cleared, my vulva became EXTREMELY inflamed after having sex every time. It would swell around my vagina opening/vestibule to the point that I could not see my vagina hole anymore when looking with a mirror. This would begin immediately after sex and would last for 6-12 hours- I could sit with a mirror and literally watch the swelling occur. Has anyone's vulvodynia began like this where huge amounts of swelling/inflammation occurred around the vestibule region after sex? Please respond!
CommentFrank, I wasn't going to get involved in the exchange of posts back and forth between the women, I believe, this site was intended for and you. I agree with the ladies who say you don't belong here and I felt compelled to respond to the one question you ask all the time "where have your poor husbands been those last ten years" well I can only answer for my "poor" husband. He spent two tours of duty in Iraq and came home minus an arm. He now works 10 - 12 hrs a day to take care of me and our 3 kids. My husband doesn't have time to sit at a computer all day spouting the nonsense you do. I had him read your posts and he thinks you need help. Please don't post me back as your posts make me ill. What part of NO, WE DONT WANT YOU ON HERE don't you understand.
CommentTo disgusted with Frank: Please tell your husband I said thank you for his service and sacrifice. I hold those who are in service to others in the highest regard. You sound like a very bitter, disturbed person. Please do not make your husband's life worse with your mean spirit. Be thankful for all he has done and all he must endure. Love, Frank.
CommentPrivate, yes I swell up like a balloon after sex. I'm not sure why. I also have to wait awhile after sex before I can pee or the urine won't come out.
CommentTo the ladies who don't want Frank posting on this site, don't read his posts and/or go away. We don't need this constant fighting on the board. Sue
CommentHi Sue: Thanks for responding to me. Did this inflammation start at the beginning of your vulvodynia symptoms or did it start far into your diagnosis? Does your doctor know why your inflammation occurs post sex? Does anyone else have this symptom of major swelling/inflammation around the vestibule/vulva after intercourse? If so, did it start at the beginning of your diagnosis or during treatment?
CommentWhy are you being so mean to everyone? What are you trying to achieve by attacking those who are upset by your posts? WHAT are you doing about vulvodynia apart from sitting at your computer repeating the same thing over and over again and bullying women who don't want you responding on this forum? You don't seem like the same Frank who was here years ago, he wasn't mean like you are. Maybe you should reread your posts, they're awfully hurtful and malicious. I don't mind you being here but you should be more sensitive to others AND you shouldn't attack others with your words, think about it... it's not the fact that you want to help with vulvodynia that makes women angry, it's the fact that you're not being very helpful at all by attacking women who do have vulvodynia.. if that's how you choose to fight against it, we don't stand a chance! If you want to help, maybe you should convince your wife to come on here to share what she's doing to get better.
CommentIf you want to be fair in accusing me of being mean, then I suggest you read some of the hurtful, disrespectful and insulting comments towards me. Considering I have been of help to women here over the last ten years, I don't think I deserve the following. My wife and daughters don't love me, I am taking advantage of women, I receive sexual gratification here, some find it "strange" that a man would post here. I love my wife and daughters so I read and post if there is a unanswered post or a question best answered by a man, such as to how a man would see a specific relationship issue. Perverts think the worst of well intended and try to twist things to their liking. I wonder how many people would say such things to my face? I explained why my wife does not post and why I don't hide being a man. My daughters are in college and law school, they don't understand the urgency and need for involvement. I really don't want to be here, don't want to read these horrible comments by cruel people. I am very disappointed with all that has been directed towards me. Sue is a dear person for her support. Now if the comments are done, I'll stay in the background. I do wish there was more effort to organize and inform the public. Thank God that was the case with Breast Cancer or my wife might not be alive. Please no stupid comments about that, you would only be showing what a small person you are. There really is nothing my wife can do to help herself at this point regarding her issues. Her lichen's symptoms combined with the effect of Tamoxifen has her vulva and clitoris in a constant state of rawness. She can't use Estrace to relieve dryness because her Cancer is estrogen related. Yeah, I'm a real bad person for not wanting my daughters to live the same fate. Go ahead and keep insulting me, if there's a chance I can learn or share I will. There is one bit of information that might help any lichen's sufferers. We will be looking into a treatment that involves laser therapy to heal the inflammed skin. $1000 a treatment, not covered by insurance and three or so treatments required. I read that there have been some cures, but I don't like to use that word freely. Frank
CommentHello everyone, I posted a little while back about my experience with Vulvodynia years ago and about the symptoms I am experiencing today. I have constant vulvar itching and sometimes it burns and leaves me in alot of pain. I basically have symptoms of an ongoing yeast infection that won't go away. I've had several cultures for yeast done and nothing comes back positive. I've had every other test done, and nothing comes back positive. Then I went to a dermatologist, they took a biopsy of my vulvar skin and it came back chronic dermatitis. So I thought that maybe it could be an overgrowth of lactobacilli that was causing this chronic dermatitis. I asked my family doctor to prescribe an antibiotic for the overgrowth of the lactobacilli, and a diflucan pill to take after the antibiotic to prevent a yeast infection. Well I took both and there were absolutetly no changes in my symptoms except for when I was taking the antibiotic I had extreme burning! I decided to go to another gynecologist to be tested for yeast again since I knew that my problem was not an overgrowth of lactobacilli. I explained all my symptoms to this doctor and he is the first one that said that he has seen this before in other women. He said I have a chronic yeast infection, and after having this for so long it started to damage my skin. He took a sample of the discharge from inside and outside my vagina and looked under the microscope and saw yeast. He said he is not sure what strain I actually have but he prescribed more Diflucan. He said if the Diflucan doesn't work, I will have to come back to get a special culture done to see exactly what strain of yeast I have because I might have a resistant strain. I have an appointment in January to have this special culture done. I was pretty sure my problem was an overgrowth of lactobacilli because yeast never cultured but it was actually yeast all along! A resistant or non-ablican strain of yeast cannot be found unless a special culture is done. This is truly a breakthrough in finding a cure and putting and end to this nightmare that I have been living for over a year. My skin is damaged from this infection and if it had been diagnosed early, my vulvar skin wouldn't have gone through so much trauma. It took me so long to find a doctor who can finally help me. Ladies, can you imagine having a yeast infection everyday for over a year, that is insane! That is torture! Doctors really need to know that this is happening to some women, and they need to know about these special tests so they can diagnose and treat these infections! I am outraged that I have been suffering for so long. I am currently taking Tramadol 100mg daily for the pain, and Doxepin 20mg daily for the itching. Hopefully soon I will be able to get the right anti-fungal that will put an end to this chronic yeast infection. If anyone has experienced this kind of infection, please email me.
CommentTO FRANK, first of all, I have gone back as far as I could and I can see what was just posted about your boring over and over posts. Since you think you are so FINE where is your Banner to start the movement. I havent see on comment from you changing anything at all. You use all these big long sentence's that don't amount to anything..And I have seen many women ask you why your wife doesn't post and we never get a clear answer...I also agree with the other women, you said you were not going to post anymore>>>BUT her u are again and again say the same thing over and over. It's time to start your own movement and let us help you with the banner...
CommentTo Private: Yes, my doctor has said I've built up an immunity to the elavil...thus more drugs...neurontin(aka. gaba..bla..bla , I forget). My doctor does believe that after all is said and tested...I had some kind of yeast problem that did damage to my skin and nerves down there. What does that mean??? I'm screwed...not literally, unfortunately. :) It's pain management for me ..all the way. I'm older, so the "gotta have sex" idea doesn't permeate my thoughts much anymore. However, living in our sex oriented society, has made me very uneasy, to the point of getting close to nervous breakdowns when I was younger. Here's what I do to keep from getting crippled up w/ pain so badly, you want to die.1-take my meds..2-try to get rest and sleep 3-try to NOT get constipated. Rough bowel movements make my condition torturous. 4- DO NOT wear super tight anything!!! 5-I put a cheap antifungal on..NOT IN...morning and night. This helps keep away the itchees 6-get to Marshall's and buy their 17/21 brand stretch jeans. They are fabulous..no soreness from them at all. Unfortunately, they do not have front pockets..BUT..at least you can wear them without thinking "Well..I'll be doubled over in pain by noon if I walk or sit in these." I must stress that even if I am religious with this regimen..I still have days and weeks where I'm in pain. I don't know why. Oh..try to stay away from sweets...bad chemistry for our systems with this condition. Also, try to stay away from soda pop..drink water . Water is IN. Everybody and their mother has a water bottle in their hands nowadays. You may urinate more , but you"ll notice that it doesn't burn as badly or you won't burn at all. Yea! I've lived w/ this condition for almost 30 yrs. I got BAD back in '95. That's when my search for a cure began. I'm still searching.
CommentTo Frank, does your wife know that you post here and is she aware of the terrible and cruel things you call the women who are already suffering enough. I don't give a rat's ass about your posts but am terribly worried that because of all the stupidity that has started since your return that Dr. Glazer's will shut down this website. That would make you real important knowing that one selfproclaimed wonderful man accomplished such a feat. Why don't you do the decent and gentlemanly thing and butt out. It would make a terrific Christmas gift to yourself and the rest of the ladies here. You can't possibly enjoy insulting others and not to mention the waste of your time. There are so many organizations out there that could use your expertise. Volunteers are so badly needed especially during this season by the Salvation Army, homeless shelters (where I volunteer), wounded warriors to name just a few. I believe you are not a bad person but I know when buttons are pushed it can bring out the worst in us sometimes. God Bless you and Merry Christmas!
CommentDoes anyone have itchiness in the pubic hair area which is not due to anything visible? I found shampooing the pubic hair and then using a conditioner a few times a week softens the hair and stops it being coarse which probably causes it to irritate the skin underneath .xx
CommentE² Acupuncture Science Since 2600BC Any skeletal muscle pain can be easily cured by Tradition Chinese Medicine (TCM) Acupuncture. For 4,610 years (2600BC), Yellow Explorer's time. Until now acupuncturist continues this ancient TCM practice to eliminating all diseases (trying). All the main hospitals of China use this to treat most patients as busy as KFC fast food. Acupuncture treatment will has needling sensation effect for first few days. This called “DE Qi/Chi” (Arrival of Oxy’Blood---needling sensation). it must be achieved so that Yin & Yang(Negative and Positive energy) can be balanced and body’s immune system has strengthens, else diseases can’t be eliminated. The fundamental manipulating techniques are Lifting and thrusting & Twirling or rotating. TCM Acupuncture therapeutic works and easily cures muscular pain if apply correctly. Beside sciatica(more trials needed), all others skeletal muscle pains are not recorded in TCM text therefore no “Acupoints(???)” can be provided to any acupuncturist as that they need to advancing the practice and pick the right AcuPoints. Be respectful, Acupuncture is not a device or voodoo magic, it does not release any things (certainly not endorphins, inflammation, etc, ..) or anti-inflammatory agents. Please do not mislead. It is a marvelous 4,610+ years old, micro surgical tool, etc, . “An acupuncture is bad science”. not much can be expected in 4,610 years ago, science not even exist. Good science & Resources only available from 1850AD such great scientists: Heinrich Hertz (1887) & Albert Einstein (1905). Since 2005 E² Acupuncture has added a new chapter of modem acupuncture science. which has scientific proven, formulated, verified and even dispelling the amount of excessive Yins/-Toxin can be calculated. Treatment uses single new save disposal and painless micro-needle insertion to proper “Acupoints(??)” and has no side effects, least risk mainly due to accident same as any treatments. No Lifting and thrusting & Twirling or rotating manipulating needed so that patient cans comfortably having a cup of tea/coffee. Acupuncturist must fully understood the Five Elements(五行), Five Changes(五变) and Five Shu/Transports(五输/通) Yin & Yang balance principles. if any one treated by 5 X 30 minutes in 2 weeks and has no relief by 4 weeks, please discontinues and shop around. I have my Plantar fasciitis cured twice by my own EE Acupuncture, last cured was on march/2011 since then pain remains free and no sign of coming back. (E²/EE: Eliminates Excessive Yins/-Toxin/Electrons) check/click on my site below https://sites.google.com/site/jameschongpainfree/ or more help below sites http://talk.plantar-fasciitis.org/profile/JamesChong?xg_source=profiles_memberList http://groups.google.com/group/plantar-fasciitis-AcupCure/browse_thread/thread/708eb7de388fae5b?hl=en-GB Sciatica update (loc: buttock & 5 inches down, 2 spots). treated on 30th/10/2011. 12 days after and feedback: "Been feeling the slight tenderness in the area where the needle were inserted. Felt my legs is tired but not the numbness." (50% pain relief, 100% no numbness) 5 weeks Later (email on 4th/11/2011): "Seems to be fine, slight tenderness but definitely better than before" (now 90% cure) why pain relief if it can be so easily cured. and the cost of curing it is so much less then a pair of PF shoes and not to mention others, . cheers James
CommentDo you think you're the only one who has daughters and fear that they too may get this condition? Someone posted here before about betaderm, maybe that would help with the lichens? We're all here for the same reasons Frank, we're all looking for answers and solutions to cure vulvodynia. By the way, I'm sorry your wife got cancer, that's awful, luckily she made it and lets hope she and everyone else here finds what works for their vulvodynia. I wish you and everyone else on here the best.
CommentTerrible, what is your problem. Stop posting nasty comments and leave if you can't be civil to Frank or anyone else.
CommentTo Private....I forgot to write that I also take supplements. I buy cranberry tablets for urinary health, a multivitamin, glucoymen condrotin (aches and pains..I'm older) vitamin C, fish oil, magnesium tablets, vits that fight allergies, and acidophilus for yeast. Sometimes I take calcium with vitamin D. That tends to bind me up and that's a no-no for me. I used to swell up after penetrative sex also. The pain was horrific. Thus, I haven't had conventional sex since the pterodactyls flew the earth. Honest!!!! :)
CommentSally, you are my kind of person. I can see that even in a bad situation you have a sense of humor. I like that. Just want to ask you, if you don't mind, if you suffer from constipation and if so have you found something that works well for you. I am older too and like you sex is not foremost on my mind but my husband is younger and still enjoys a little. He doesn't push it and I even initiate it every so often because he is such a darn good husband. The problem is he is getting up there too and I lay there thinking "will this ever be over with". Whenever I see a new doctor and am asked if I am sexually active I answer them saying "my husband is but I am not". I always get this surpised look liike what do you mean and I say " I just lay there". I read a post recently where she said Neurontin topical cream helps her burning. I just picked it up from the pharmacy and I will try it and see if it does anything. Most of my pain is directly behind the pubic hair. I had PT but that only put me in more pain. I am OK when I am sitting but walking is really hard so I don't get any real exercise. I am on high blood pressure medication as well as my Elavil and low dose Xanax so I suffer from constipation big time. God Bless!
CommentOK...some things that help with constipation are...prunes. Sunsweet has new ones that have no preservatives. Unfortunately, they are so delicious, you are tempted to eat the entire bag. I usually try 3 or 4. Also, greens help too. I boil up endive once in awhile and that really helps....(maybe a little too much.???) When I get an attack of really bad pain, I drink Pepto Bismol and my meds and it seems to calm things down in maybe, 4 hours. Private..you are brave.!!!! The pain is so bad, even from a Cu-tip pressed there by a doctor...as the kids say....OMG. I do not have a husband anymore. This is a good thing . No more guilt. His new wife can help him out. I'm busy trying to live with as little pain as possible. Yup, old and alone. But, I'm fine. I retired and went into a little business. I try NOT to let this illness get the best of me. If I can walk and sit...it's a good day for me. Oh..stay away from pantyhose..EVIL. I used to cut the crotch out when I was working full time, but, the darn things rubbed in a different way. I ended up in pain. EVIL!! I even bought some from Frederick's of Hollywood!!! EVIL!!! I do upper body exercises with weights to try to stave off "bulking up"..aka, getting FAT. Not working!!!!! Before I came down with this hidious illness, I biked and walked 4 miles every day. I used to be very active physically. Then, vulvodynia crippled me up. Thank goodness for elavil and neurontin. It's not easy keeping a sense of humor with VV, especially when you are having severe symptoms. I'll lounge around in my nightgown until I feel "human." I had hoped I would be around for THE CURE..but , not so sure on that one. Can you imagine if we took some pill and were rendered cured????? I think I might become an old slut. I'd have to make up for lost time!!!! Yes????
CommentI think one of the main problems here is that people don't step into another's shoes before posting. It's difficult sometimes, especially when you're very upset or angry, but in order to have a productive relationship or conversation, or even a civil society, it must be done. Try and imagine that you are the person receiving the message before you say something. Would the statement hurt your feelings? If so, think of a way to say it in a way that won't, or perhaps don't say it all if it's not necessary. There are times when I've mentioned this to people I know. Times when I've said, did you think about how you'd feel if I said "such and such" to you? And I've had people actually tell me, that they didn't really think about that, and that it would make them very upset if they heard the same statement they just directed to me directed to them. Empathy is natural for some, and for some it's a skill. Empathy is a trait that must be nurtured in order to have a civil society. I know many of us V sufferers feel like other don't understand what we're dealing with, and so I try and offer this philosophy as food for thought. Peace out.
CommentTo Anonymous: That was a very thoughtful post. I hope you can consider my words in the kind spirit they are written. My twenty three year old daughter is home for the Christmas break. She is a first year law student, brilliant, lovely, and a tender soul. I asked her if she ever read this site out of curiosity because she is aware of her mom's health issues. She said"Oh no dad, it frightens me to think that I may someday get what mom has". I asked her to be patient with me as I explained my presence here and mixed experiences and responses. I explained as I have here how I felt sharing with loved ones, relatives, friends and public awareness might be a good thing. I told her that she should not avoid learning, discussion, and education on this subject because that is where hope lies. She was not upset but I know while she is a fighter for human rights, when it comes to her own health and things like mortality she just can't handle it. I think empathy is a valuable and precious trait, but so are honesty, bravery and many other traits that make us more than living creatures that simply exist. I know the limits my health and pain place upon me, so I don't expect those in severe distress here to accomplish great things for others. I do hope that most who have achieved pain management can see beyond their individual circumstance and do the difficult things necessary to make a difference for others. Love and best wishes for the holidays, Frank P.S. I have not see the mention of "D-Mannose" as a treatment for UTI's lately. This simple sugar works similar to cranberry extract only better. It makes the walls of the bladder very slippery so that bacteria such as e-coli can not take root and reinfect. It is available in health food stores or online at www.swansonvitamins.com
CommentFellow VV sufferers...now we've got two.... Anonymous AND Frank. Anonymous basically scolds us in a "I've got the answer to your problems" professorial manner. Frank is still feeling compelled to comment, searching for some thread of approval, Oh brother.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
CommentHi Sally, I really didn't mean my post to be a scolding or an answer to anyone's problems. I was just musing aloud. I hope it didn't come across that way because I didn't mean for it to. I think I was just trying to say that we come to these forums to support one another and empathy seems to be the best form of support anyone can offer. I am always open to comments, and do not profess myself to be an expert on anything. I was only musing aloud as to why people were feeling so hurt by other people's postings. Best that this site goes back to being a support forum imho. That's all I'm looking for and I suppose others as well- support and a safe place to post for information, expression of feelings... Peace
CommentHello all, I am a recent poster and was having a lot of pain like many of you. I just had to come back and tell you that in the last 3 weeks my pain has subsided 90%. I went to a physical therapist for pelvic floor. and i bought a book "heal pelvic pain" by amy stein. i would encourage any that have not tried this to try it. the only issues i had so far was the therapist gave me kegels to try-DONT DO IT. Not yet. The book shows why. I have actaully been following the book more than the therapist but both are good to try. There is also a 20/20 episode you can google for "Amy Stein" and there are some stretches that she goes through online. my best to all of you. if you havent tried it- please do so, but NOT kegels. At least not in my experience. The book first goes into stretches to "end the pain", then "strenthenging" then for some "kegels" I am in still in the "end the pain" section.
Commentto frank- thank you for your interest in your wife's condition. I dont get the mean spirited comments directed at you. Women- the man in a relationship also suffers and wants answers. Now IM no longer posting here as i came here for comfort and ideas for help. The ugly comments make things worse. what kind of support group is this? Now im concerned anything i post will meet with criticism and ugly comments. forget it. this isnt why im here. I will now scour the internet for somewhere else more supportive...to EVERYONE.
CommentTo anonymous & vic ctria: There is no need to leave this Forum and no need to apologize to Sally. I am positive she is as Oprah would say, "A poison person"! When my honesty and caring is met with vile comments I am more determined than ever that there is a need for my presence. I agree that not only women suffer as a result of this illness and associated illnesses. I refuse to be bullied or kept quiet by a person who is close minded, bitter and simply mean. I will continue to post whenever I feel it is necessary and whoever does not like it can either disregard or leave! I am sorry that I ever entertained the idea that someone so inconsiderate of others could be swayed. Please invite the men in your lives to share, post, be a part of your lives and this issue. Love, Frank
CommentI feel you read the wrong message into those of us who want Frank to please stop posting on this site. I for one is not close minded, mean spirited and bitter just to name a few of the adjectives he has described us as being as well as demeaning our husbands because they can't sit at a computer all day posting to VV sufferers. I fail to see how that is helping us. If he really knew the pain we VV sufferers go through every day he would never use those words. think Frank should get a life. We are not hurt by other people's postings just Frank's. He is not a doctor, he does not suffer from VV and from reading his posts he describes himself as being frustrated from not being able to have sex with his wife which I am not sure even exists. Is that what we want to hear. Hope the new year brings him much happiness, good health and another site for him to do his posting.
CommentNo, I'll be right here! My wife is real, our sexual problems real, my frustrations real. I understand more than you could imagine but since you refuse to believe that or anything else I post, I suggest you stop reading my posts or move on. Chronic pain does not excuse the rude comments by vile people with closed minds. Breast Cancer treatment, along with many other advancements would never have taken place without public support. I refuse to believe anything having to do with a woman's body is dirty, or too private to discuss if it will lead to enlightenment and understanding. I will not change my mind and strongly urge you to move out of the shadows, abandone your old fashioned thinking which has turned men away from this site and whatever help they may have to offer. You are wrong and if you still think you are right then you share responsiblility in keeping Vulvodynia hidden from any progress every other illness has benefitted from. I will not abandone my ideals, and I will not leave this site. Join in welcoming me, other men and others who are a part of your lives. Stop the disgraceful comments and negative behavior. You really think my wife is make believe? Disgraceful! Apologize and grow up. Frank
CommentVicctria...You are so right about NOT doing kegels before the area is ready! I have followed the Stein protocol and it did help tremendously. Also, I took my meds and supplements. However, in my case of VV, the pain did come back. It seems that things I try will work for awhile, some as long as 5 yrs. But, somehow, I end up in a fix again. Once it was bike riding when I was 95% cured. Next, it was medication reduction when I was doing so well, my doctor and I decided to wean off of neuronton slowly. NOT a good idea...pain , pain , pain. But, I'm a chronic VV sufferer. This is just MY experience. Others have found cures and are doing very well. So, I agree...kegels are a no-no until you are definitely ready.
CommentFrank, I worked in the social service field for 42 yrs. From your writings I can sense that you have issues, one of them being anger management. Another is narcissism. When we don't hang on to your every word as gospel, you have a hissy-fit and start with the abusive rhetoric. I resent the statement that it's our fault that the world doesn't know about vulvodynia. My vulva's been in more doctors faces than you can imagine...very close up and personal, I might add. Doctors close to home and many miles away have peered and poked through magnifying glasses..BIG ,POWERFUL magnifying glasses I've written and spoken on the illness for over 30 yrs. You grow-up and apologize! Oh...and get some professional help. Sorry girls..I know I'm just fanning the embers.
CommentSally: The respectful exchange of ideas is a start, but you have a long way to go. Regarding anger management, I suggest you stop insulting me and assuming alterior motives based on the other men you've known. You don't need to hang on any of my words or read my posts if you are not open minded and mature enough to interact with a man. I went with my wife to many of her gyno exams and I know for a fact that many of those doctors you hold in high esteem failed her. When she was no longer a baby maker her god like male gyno became upset with her complaints of vulva pain. He saw nothing, it was I who insisted he actually look closer and see the paper cut like tear at the six o'clock position! One of her female gynos suggested I go slow during intercourse and use plenty of lube. She assumed the tear was the result of rough sex and an impatient partner, nothing could be further from the truth. My wife's skin was frail and tearing regardless of intercourse but the easy answer was the one we were offered. The Vulvodynia expert in CT wanted to start her on elavil without knowing her full medical and family history. One expert female gyno claimed she would cure her and rebuild her vulva by having use apply a mixture of estrace, testosterone and another steroid. Surprise it did not work! I was there when she had surgery to creat a new scar in the area of an old episotomy repair, two months later and the tear reappeared without sex. I have stood by my wife through Vulvodynia and Cancer. I have stood by my wife as we buried our infant daughter. I will not be bullied from this site by a rude, vile person who thinks it is only for women with vulvodynia or men who are experts!. If you are not a mean spirited and closeminded person, apologize and wish me and my family Happy Holidays. I think we could all use some good wishes and kind words in place of insults and misguided assumptions. Frank
CommentI am in agreement with you ladies but I consider Frank in much the same way as I do vulvodynia they are both a terrible problem that we probably will never get rid of. Maybe if we ignore him he will go away. Maybe he is not a man at all but a woman suffering from VV and embarrased about it. What help is he giving anyone here. I know there are more constructive ways for men to get involved besides wining on this site. Why is he so anxious for other men to post here. Can we imagine this site if there were several men posting. BAD IDEA and I don't mean any disrespect to men. I love them. Do like he says and skip over his posts. I know that is hard as they take up so much darn space. Try and remember what this holy season is all about. He has issues so cut him some slack and PLEASE PLEASE DO NOT LET HIM INTIMIDATE YOU AND LEAVE THIS GREAT SITE. WE ALL NEED EVERY WOMAN'S INPUT.
CommentTo the above post about Mr. You Know Who............... As the British say.."Spot On."
CommentWelcome to The Current Vulvodynia Guestbook: This site is open to All who suffer from Vulvodynia and All who love and care about those who suffer and want to learn more, share and show support. Please do not allow the insults by a a few close minded and ignorant people to shy you away! Don't believe for a second the claims that these insults are written by educated people. Educated people know that exclusion is a policy practiced and endorsed by those who fear and hate! Exclusion fueled segregation, prevented American Women from voting, and is responsible for many more historic events which shame our society. I do not fear the ignorant, I hope to educate them. I hope progressive women who are willing to join hands with good men, will welcome men to this Forum. Together we can learn. Together we are stronger than apart. God forgive the ignorant who attempt to exclude and use lies and fear to further their vile cause. I have a lot of cooking to do for tonight's meal so I won't be posting back for a while. I'm a man who cooks, guess some find that strange, some who don't know any better. Frank
CommentGee whiz..I hope Frank doesn't suffer a burn whilst cooking Christmas goodies. He might experience what our vaginas feels like . OUCH.!!!!! :O
CommentFrank you certainly are a wealth of information. Of course this is the Current Vulvodynia Guestbook. Where in heavens sakes did you think we were posting. You must believe we are all entirely stupid and you are the lord over us. I think you actually believe that this is your website. Shouldn't Dr. Glazer welcome women with vulvodynia to his website or have you asked him to move on to another site too.
CommentCarolyn: You are welcome to stay as long as you have an open mind and do not believe excluding men will accomplish anything positive. I did not suffer any burns to the sick minded who think that is funny. I made five lobsters in tomato sauce, fried calamari and shrimp scampi. My wife made stuffed shells. We had a great evening. You think your vulvar burning is the most excruciating pain imaginable? I have compassion for my wife and you ladies, too bad it is not reciprocated. Several intestinal resections cause some serious pain and life threatening events. Herniated discs in my neck and back cause chronic pain. Where is your humainty and compassion? Some pretty small minds here, I'm very disappointed. I wonder how you treat the other men in your lives, if you have other men in your lives. Please continue the ignorant comments they serve to prove what kind of people you are, like I said earlier, exclusion is the work of those who fear and hate. Frank
CommentHi ladies Merry Christmas. This is to Frank. I been reading a little bit of whats going on in guestbook.And one article I came across was where you were talking about your wife using a steroid combo. Please please tell your wife never to use it again unless she has linchen planus. What it does is thins out the skin then all hell breaks loose. She will never get the thickness back in the skin. Her skin will always rip and tear after using it. Believe me i know. Two years ago I came down with a yeast infection and used diflucan. With in 30 minutes all my mucous membranes were on fire. So I went to doctor he gave me steroid ointment for the burning on my vjay and behind. I only used it for 2 weeks. After the 2 weeks there was nothing left to my vjay. Now every time i wipe down there after peeing pain like you wouldnt believe. I think its something to do with the steroid ontiment. I shouldnt have this pain when just wiping with toilet paper. Forget sex. Have your wife try taking a warm bath with epson salt and see if helps the vaginal tears. It helps me after i have sex with pain and swelling. Also when you do have sex try having your wife on top .She can lean forward so theres so much pressure on the six oclock position. Its something you can try. So good luck. I know alot of men out there that has girlfriends and wifes that are going thru this. They know what missery we are going thru. Just like you know what your wife is going thru. Well good luck. Please tell your wife no more steroid cream.
CommentTo vickyp: Thanks for the concern and reply. The combo of creams took place at least six or so years ago. She can't even use estrace because her Breast Cancer is estrogen sensitive. She occassionally uses the recommended ointment for lichen's sclerosis which is what they "think" she has! I posted here years ago that our positions for intercourse are very limited and the one which caused the most damage was doggy style. I'm fifty eight years old and just over two hundred pounds but I work out in spite of my health problems and I'm pretty strong. I can maintain the old missionary position wihout putting any pressure on her or causing damage as long as we use lube and go real slow. My wife will sometimes be on top but her strength is not so good although she has been taking yoga classes and doing weight watchers lately. My biggest upset is that I can't give her the kind of pleasure I did before she had these problems. I'm not a selfish lover and I feel so guilty all the time. I did research medicine to kill my sex drive but the side effect is severe depression which I can't risk given my current state of mind. I think about options and alternatives constantly, I'm confused and at a loss with our situation. I'm sorry some of the women here think my being a man and openly posting such thoughts is inappropriate. Men have been criticized for not being open and sharing their thoughts. Here I am empathizing, trying to be of help to those who are curious as to what a man might be thinking and I get insulted with stupid, rude comments because of my sex! These women are living in the dark ages. They lack compassion. Maybe it is only one or two women who think this way, but that is one or two too many. I'm not God's gift to women, but I've lived all my marriage in the hope of being that to my wife. Maybe that kind of love is beyond what some can comprehend, or maybe they are jealous? My wife won't visit here, she goes to work, goes to doctor visits for her various aliments and spends time taking care of her father's affairs and our daughters in college. I'm disappointed with some of the responses but I understand how life can make some people bitter. I posted that I'm here in hopes that my daughters won't suffer the same fate as their mom, and someone repsonded "Frank, do you think you're the only one with daughters!". Why the nasty tone? Why not say something, like "Hey, that's thoughtful, many of us share your concerns". My wife has an appointment to discuss laser treatments which may "cure" her lichens. The process involves a gel applied to the affected area and laser treatments to destroy the lichen's. There is much to learn and discuss prior to undergoing such treatment so as I learn more I will post back. I am hopeful for my wife and I am hopeful I have something good to share. Frank
CommentFRANK, give me a break already. Can't imagine any person being interested in your doggy style of having intercourse or any of your other styles. Is that supposed to be educational to those of us who are close minded, living in the past, bitter or any of the other words you use to describe us. I think we can all figure that out in our own bedroom. I am more convinced that you are nothing more than a dirty old man. We are interested in what other women suffering from Vulvodynia do that helps them. Call me what you want but I believe you are crossing the line for a lot of us. Get over yourself.
CommentDisgusted: If you weren't ignorant you would know I was responding to a post. I don't care what you are interested in, personally I think you are some kind of pervert getting off on my suffering. There happen to to sexual positions which cause less pressure and damage to certain areas of the vulva, and rather than cause more damage by experimenting, this exchange of knowledge might be of benefit to someone. I am here to learn, share and be of help. I suggest if you have other intentions you might be happier at an adult site, not a site where women need all the help they can get. I'm not going anywhere, so either stop reading my posts or continue the rude, stupid comments. It was not my intention to excite you, have you no boundaries? Frank
CommentOkay Listen Up all who don't want Frank here and Frank, First of all, FRANK I guess you are not a man of your word..You said you were only going to make one post and then stop....But NO your still here. To be very honest, I have been on this site for several years...I have received some great idea's, and help from lots of women...BUT NEVER EVER EVER FROM FRANK. Are you trying to make us think you are the only concerned husband??? I dont think you are.. And it is so strange to me that after all these years YOU are the only man that post's here...Makes me wonder why doesnt your wife post????OH that's right, many women have asked you that question and never got a clear answer. Another reason you creep me out. This is for women who want to help other women...Not for one male, ( can't use the word man...because a real man would get the hell off here)...and yes I have considered what the lady stated about how we would want others to speak to us and she is right..The difference is, If I thought for an instant that I was hurting someone or making them uncomfortable I would Exit for sure..But not you Frank, OH no, no, you have to still continue with this nonsense that you keep spewing. Save us all the long speeches that you give to project to us how smart you are. Save us your yatta, yatta, crap, and now we have to hear about your doggie style sex and have to listen to how strong you are...WE DON'T CARE...you scare the crap out of me....and Im sure lots of us cause I wonder what you are doing when you are reading our posts to each other. Let us alone, this is a site for women with VULVAS and VAGINAS...do you have one???? GET LOST and save all the intimidation...it doesn't work.
CommentThought I would help the reading impaired such as "disgusted" and Sally. In my response I wrote that doggy style is something to be avoided because it puts a lot of pressure on the six o'cock position and for women who have problems with tearing such as my wife that is not good. So it is not "My" doggy style for those who can't comprehend the written word. Now let's move on to the next moronic comment. Disgusted is more convinced than ever that I'm a "dirty old man", now that is brilliance based on either imagination or a lack of a better response.? Let's see what could lead a person to such a conclusion? I'm fifty eight years old, I'm a man and I love making love to my wife, although Vulvodynia and other health complications have severely impacted that part of my our marriage. I am a faithful man and never cheated on my wife. I am here and not on some porn site which is more than I can say for my detractors (people who write stupid things aimed at me). SO I'm old, I'm passionate, I'm a good husband, does that make me a dirty old man? That's about as stupid as saying a man who has many lovers is virile and a woman who does the same is a whore! The person who would say dirty old man based on fear, hate and ignorance would say the same about women. I sure hope it is only one moron posting such things. Gosh, I hate to think of the people who pass themselves off as professionals, stooping to such antics. Come on, grow up and stop acting like a fool. You are an embarassment. Frank
CommentThought I would help the reading impaired such as "disgusted" and Sally. In my response I wrote that doggy style is something to be avoided because it puts a lot of pressure on the six o'cock position and for women who have problems with tearing such as my wife that is not good. So it is not "My" doggy style for those who can't comprehend the written word. Now let's move on to the next moronic comment. Disgusted is more convinced than ever that I'm a "dirty old man", now that is brilliance based on either imagination or a lack of a better response.? Let's see what could lead a person to such a conclusion? I'm fifty eight years old, I'm a man and I love making love to my wife, although Vulvodynia and other health complications have severely impacted that part of my our marriage. I am a faithful man and never cheated on my wife. I am here and not on some porn site which is more than I can say for my detractors (people who write stupid things aimed at me). SO I'm old, I'm passionate, I'm a good husband, does that make me a dirty old man? That's about as stupid as saying a man who has many lovers is virile and a woman who does the same is a whore! The person who would say dirty old man based on fear, hate and ignorance would say the same about women. I sure hope it is only one moron posting such things. Gosh, I hate to think of the people who pass themselves off as professionals, stooping to such antics. Come on, grow up and stop acting like a fool. You are an embarassment. Frank
CommentI guess you didn't read my last post....Your the Child, never know's when to quite...You don't impress us with all your word's of wisdom...NOT....Leave us alone, leave us in peace....Your the child...and because you won't leave makes me think you have sores on your hands....
CommentTo "Get the hell off": I have explained at length why my wife does not post here and never has in ten years. Why don't you be a woman of your word and leave because you are hurting my feelings with the insults, accusations and rude comments. You have nothing to offer that is positive. I do have a Vulva, and Vagina and Clitoris..They are a part of the woman I love. I see no humanity, no caring or kindness in such posts by women who are trying to bully me. If there are no other men who are adult enough, concerned, caring, loving and strong enough to be here then that's their problem! I don't need anyone's permission, much less anyone who is so vile as to suggest the nasty things I have read towards me and my wife. I wonder if any of those nasty comments came from people who call themselves christians? IF so they are hypocrites and should beg God for forgiveness! This site is for wmone who suffer from Vulvodynia and the men and women who love them! I'll bet you are racist as well, and endorse excluding people of color from your lives! You profess to decide who belongs here and what qualifications they should have in order to participate. Who died and put you in charge? You will not intimidate, frighten or bully me. What twisted, misguided thoughts you must have to assume a man who loves his wife and daughters has no place here. Maybe you find the clinical discussion of sexual matterial as stimulating, if you that is your problem, not mine. Disgusting indeed!!!
CommentI'm crying into my pillow every night because I'm pea green with envy that Frank has love to share .Of course, I'll never experience that because of??????????the word ignorant comes to the forefront. Also..jealous ..reading impaired...oh yes "vile" that's a constant favorite! Don't forget closed minded, predjudiced , and now non-Christian. It's "been real" as they used to say. I'm calling in the BIG GUNS when the Glazier office opens up after the holidays. They know me. End of story.
CommentGreat idea Sally! If they read the Guestbooks, they know me too. They know that I have been posting here for over ten years. They know the some of the women I've helped. If they have read your posts directed at me filled with insults and baseless accusations they know what kind of person you relly are. Unless they change the format, it will be impossible to know who is really posting, and it will remain impossible to stop trouble makers like yourself who wish to keep good men away. I welcome Dr. Glazer and his staff to be more involved with the Guestbook.. Frank
CommentIm 20 years old and was told about this site and that it may help me. I have been reading these posts and I am sorry to say I dont think I can find help here. I am truly not at ease with one male posting and seeing what I write...with that said...there is no need for him or anytone else to act like a child and to post back to me how close minded I am and whatever other negative adjective can be found....this is totally stupid
CommentYoung: If you are who you say you are, "Young", then this is a place to learn and share. There is no way of knowing exactly who is posting and reading here, I am open and honest in stating that I'm a man, but for all you or anyone else knows there are several men reading and posting. I don't see the sexual stimulation one could derive from this site but I suppose there are some depraved people out there. There are better ways to operate this site, such as proper registration and moderating to prevent improper language, personal attacks and threats such as have been directed towards myself. Young, I strongly urge you to get over the thought that a man can't be involved with this subject manner without being a creep. Would you avoid going to a doctor who is a man? Talking to a police officer who is a man? I'm a person at a keyboard in cyberspace. I'm a husband and father of daughters your age. I have no interest in your sexuality but rather in this illness and anyone who might wish to share, question or respond in a respectful manner. Part of being a functioning adult is learning to do what is best for yourself and that is not always easy. I know adult women who have not had regular gyno checkups because of insecurity or shyness and they run the risk of serious health problems. I regret if you insist on not posting here, but I strongly urge you to overcome your objections, fears or mistrust. I have posted here for over ten years unlike some of those who have objected to my presence recently. I have shared advice given to my wife, advice I have learned along with my wife. Just because this illness affects a woman's private area does not mean it should exclude caring men who share their lives. We should be adults here, and act like adults. Young, would you refuse birth control counseling from a person simply because he was a man? Where is our society headed if women insist on excluding men from issues that affect both of them? I keep hoping the atmosphere will be more progressive and then I read something like this. I sure hope it's from the same person and that young women are better informed. Frank
CommentYoung...Sorry that this site has turned into something that resembles our local landfill. I'd tell you some other sites addresses, but I fear our nemesis will follow. He's having such a ball on this one, I shutter to see him infiltrate the others. This site has reached career status for him as it is. Just Google VV, and there are sane , helpful, informative sites out there. Their suggestions for relief and cures are current. They are discussing the new laser therapy!! Again, so sorry.
CommentFrom Young,TO SALLY I came back on this site to see if there was some way to get in touch with YOU, and there you are Frank in doubting if am who I claim to be....no wonder these women are at you to get off of here. I asked you not to post back to me but you couldn't mind your own business. No one else but you makes doubting statements like that. SALLY, IS THERE ANY WAY THAT YOU AND WE CAN GET IN TOUCH WITH EACH OTHER OFF THIS SITE...????? I THINK BY SOME OF WHAT YOU HAVE POSTED YOU COULD HELP ME
CommentFrank...No, no, no. no. no. no.no. When I say they know me, I meant they KNOW me. I'm not JUST a guestbook contributor. There are ways to track writers to a forum that doesn't display e-mail addresses...Dah!
CommentTO SALLY, I dont know if you have had a chance to read my last 2 post but is there anyway we can talk off this site....???I read some of your posts and I think you can help me...But with a male reading I am not open to that....Thank you
CommentTO SALLY, I dont know if you have had a chance to read my last 2 post but is there anyway we can talk off this site....???I read some of your posts and I think you can help me...But with a male reading I am not open to that....Thank you
CommentSally, it's called an ip address, and be my guest! You have insulted and threatened me so I have no problem with this going to a legal level. In the ten years I've posted here plenty of women have exchanged emails with eachother and me. I stopped posting my email address because of privacy issues and if this site adopts a registration policy I will be happy to post that information again. Where were you all those years when we discussed how to make boric acid suppositores to treat yeast infections? Where were you when I was the first to post how semen can upset the ph balance of the vagina and causeyeast overgrowth. Where were you when I was the only one to respond to some posts by women in pain, crying out for a caring soul? You have nothing to offer and your threats may work with people who live in fear but not me. Maybe we will meet face to face in the proper forum and a judge will have you apologize for the insults and accusations? Try not to poison any open minds and I sure the heck welcome any contact from Doctor Glazer. I consider some of your posts as terrorist threats, such as calling in the "Big Guns". I'll be right here waiting. Frank
CommentYoung, I'd LOVE to help you. I've got 30 yrs. of experience into this illness. Maybe if I tried some of the things I'm using now, way back then, I wouldn't be the pathetic, ignorant ,anti-Christian, unloveable, jealous, anti-progressive, unworldly, uneducated, man hating, reading impaired, OOPs, lest I forget, VILE {that's my favorite :) } excuse for a woman that I am. I'm on other sites?????? I'm also on a Yahoo group titled VPD. They are closely monitored...No way would VPD let this happen on their site. Don't fear, I'll get this situation cleared up.
CommentI can't wait! I've got eighteen Guestbooks of evidence to support my behavior, including the vile insults and accusations made by Sally. Maybe we will finally discover her real name? She could meet my wife in court, oh I forgot she is make believe and I'm a woman....Frank
CommentAs the kids say...OMG!!!!!!! That is the shortest response Frank, or is your real name Francesca?????, has ever posted!!!!!!!!!!!!! Hey.....Francesca...............I'm old!!!!!!!!! I've been lawyered up since before you were born. Have some respect for the elderly.
CommentSally, I'm old too and you've show me no respect! I would imagine if you have the same manners in public that you have here you would need legal councel. Maybe this time you nasty mouth has taken things too far? Care to apologize and start over? Over ten years of posts by myself and some other men prove this site is not exclusive to women. Like I said, I'm not going anywhere! Frank
CommentFrancesca..We'll just see about that one, now ,won't we???
CommentThat's right Sal. Can't hardly wait!
CommentFrank why dont you stand by your word...be a man and stop this...I looked over your years of posting....I dont see a thing that has really done much for anyone....leave us in peace will ya please...No more on and on about the 6:00 postion of pain, tears etc. if your such in demand why are we all still here suffering
CommentCurious: I don't know how many "years" of guestbooks you read over but there are posts by women who appreciated my responses. I did stop posting for a while in hopes that there would be more activity, but it was like a ghost town here. Several women posted with questions and no one responded which really upset me. I'm no savior who is going to cure anything. I have my own health problems to deal with and my own wife to care for. Recently though, the "vile" attacks by sal or sally or whoever that person is have shown me that is it never good to back up from a bully. This site has been open to me and other men and if that was not the case I would have stopped posting years ago. I'm trying to answer your questions so I have to repeat that I believe this illness needs more public awarenss, more support and research. I am not up for the job, but someone must be! I have nothing else to add except that I will post back if my wife learns anything from her upcoming doctor's visit regarding laser treatment for her lichen's sclerosis. Now unless there is another question, or unless sal/sally has another insult or threat, I'm done here for now. Frank
CommentI go by the adage, "It's not a threat, it's a promise."
CommentLet's hope so, this may be a good opportunity for publicity and for men to finally be welcomed. I hope you were not referring to guns or violence against my family? Frank
Comment"I'm done here for now."???????????????????? Let's see, anger management issues, narcissistic, AND paranoid. Lovely specimen!!!!!! Lovely!!!!!! Girls...I promise to do all I can to get this forum back the way it once was...women helping women. I've already gotten the proverbial" ball "rolling.
CommentTO SALLY ONLY, I will look for you on the sites you stated and you said you will get the ball rolling to get this forum back to women helping women. I just found where we can contact Dr. Glazer by e mail regarding stopping anyone other than women to post on this site...I wonder if you think that will help us to get back to just women. Please give me your opinion Sally and I will do whatever you think you need....
CommentTO SALLY ONLY, I will look for you on the sites you stated and you said you will get the ball rolling to get this forum back to women helping women. I just found where we can contact Dr. Glazer by e mail regarding stopping anyone other than women to post on this site...I wonder if you think that will help us to get back to just women. Please give me your opinion Sally and I will do whatever you think you need....
CommentYoung...thanks for the support. I already e-mailed Dr. Glazier. Could you e-mail him also? I'm calling via phone starting tomorrow. I hope his office is open. But, being the holidays, maybe not. I'll definitely leave a message. I'll keep calling until we connect. They have called me back before, but it was about my illness. Not to fret, we'll get the job done. I'm relentless. Did 'ya ever?????
CommentI also just e-mailed! Have faith that justice will prevail over the closeminded, who resort to insults and threats. I doubt Dr. Glazer will choose to close the forum to men after all these years, but ya never know. Glad you were not threatening my family with violence, that would have required a different communication. Frank
CommentTO SALLY, I sent my e mail to Dr. Glazer and I also have his phone number . I will make my call tomorrow but until then lets just not acknowledge any male presence and maybe without an audience he will have nothing to say. Im sorry I have to look for you on the other site but I will beause I think you can give me a little help with one last problem (I hope) from this damn problem we women here on this site have to battle...Until then...I hope Dr. Glazer will understand our situation...and give us some direction to go with this problem of male posts. (I should say only one male)
CommentFRANK wholy crap you said you were done here unless your wife had additional info or if there were anymore questions...I didn't see any question directed to you....But again you just cant shut up... OH MY GOD enough already....
Comment"Now unless there is another question, or unless sal/sally has another insult or threat, I'm done here for now. Frank" I had to make sure the threats were not of a violent nature directed at my family. We can't be sure who sal/sally really is or what he or she is capable of. You would do the same if you cared about your family and were receiving threats. Frank
CommentYoung...Thanks..we'll slay this dragon. Hey, I'm ancient. This internet stuff doesn't scare me one iota.
CommentDeath threats? Talk about anger management! Frank
Commentthis is turning into an episode of the simsoms... THREATS FRANK I dont think so a little dramatic don't ya think. Please let's stop giving him an audience.
CommentI am laughing so hard from "IT'S" responses, I can hardly see straight. You don't honestly think a woman my age is going to let "IT" have the last word????????????? I don't believe you even e-mailed Glazier. What can you say?? These suffering woman are being..".close minded, anti-Christian, yada , yada,...OH..VILE..WAIT..threatening terrorists......????????????????Please, do us a favor and e-mail Glazier lots and lots. You'll win our battle for us!!!!!!!!
CommentCurious, women who have ignored threats have not all survived to laugh as you do! How can you be sure Sally is not a man or that I am? The answer is trust! You trust we are who we say we are, isn't that right? Easy to believe that much but nothing else? Read Guestbook 29. . I have been on this site for years, and thanked for my contributions. Sally is an unknown who doesn't know the difference between cranberry extract and D-Mannose. Frank
CommentSounds of unabashed, sustained until I'm out of breathe, laughter!!!!!!!!!!!!!!!! Curious, you're right. No audience, no "IT." Got carried away. (Still laughing)
CommentI can't stop laughing, I can't believe Frank thinks a woman suffering from vulvodynia would get excited from reading his posts, I'm referring to a response to disgusted. These last few posts are getting ridiculous, I've got to say, I don't think he's very helpful but he is very entertaining indeed. I do agree with him though when he says that many posts from women go unanswered here, I've noticed that too. Personally I've found the IC network site to be more supportive, it has a thread for vulvodynia. You can private message on the forum. I hope this helps someone
CommentTo begin with the Doctor's name is Glazer, not Glazier. Sal/sally is referring me as "It" in an attempt to objectify me, in much the same way as men objectify women to rob them of their identity. People do this to make the object of their abuse less human, nameless and faceless. If sal/sally is a woman she is disturbed, if he is a man, he is dangerous. There is no way this behavior is the work of a professional. Ladies, don't let this disgraceful behavior represent you or this site. Frank
CommentTo:Comment and Suggestion for other site...: You're right Wonderful site. Great gals over there. Another is Happy Pelvis. Terrific site that covers IC , VV, PID, etc.
CommentI was out of town for several days and came onto this site tonight. How infantile are you people who are attacking Frank? If you don't like what Frank has to say, then do us all a favor and get the hell out of here!!!!!! Start your own Vulvodynia website. Dr. Glazer has no intention of banning Frank or any other man from this site. I emailed him weeks ago and that's what he told me. So, "ladies" and I use that term loosely, grow up and try to help the other women on this site instead of bashing Frank in every post. Sue
CommentSue, dearest, It's not because Frank is a man, that he should quiet down. It is the tone of his comments. Go back and read them. Ask yourself why he left this forum a year or two back of his own volition.The posts are dictatorial and lack compassion. You can read it and sense it. Something "ain't right " there. NOT appropriate for this forum. And, YOU know it.
CommentGood morning to everyone. As the owner of vulvodynia.com it has been brought to my attention that there has been recurrent contention here recently. It has been and remains my policy that everyone, whether sufferer, caretaker, professional, male or female.....all those seeking information, understanding and compassion regarding essential vulvar pain disorders are welcome. An open door, nonjudgmental, policy has served us all well, but part of such a policy is the inevitability that from time to time contention amongst posters arise. In the 10+ years that this guestbook has been on the vulvodynia website I have chosen NEVER to impose the views or positions of any individual or group upon others. In the spirit of recognition of the value of this guestbook to its posters and readers, I respectfully request that we all remind ourselves, whenever we post or view the posts of others, that tolerance, compassion and understanding are key to healing and we are all here to promote healing of ourselves and others through how we relate to other. Please be tolerant and respectful when addressing each other to promote the goal of this website......Sharing in a healing community. thanks. Howard Glazer PhD
CommentDear Dr. Glazer: Thank you for keeping this Forum open, and for reminding us why it is here. I hope this settles the matter once and for all that caring men do have a voice. I know I must be more careful with my words as there are women in pain and women who have been hurt seeking help. I would also like to thank Sue for her continued support and open mind. Please let us take the Doctor's advice and return to the helpful spirit of this site. Thank you. frank
CommentHello everyone, I read Dr. Glazer's post and I thought it was full of compassion, and caring but he really didn't make mention of a male on this site and, of course I understand his position.. But I have to admit, I for one am leaving this site and will find one where male presence is not allowed...I have visited a few while this was all going on and I did not find one site with male comments...So therefore, goodbye to all of you who don't mind a male reading about your vaginal and anus problems...There is nothing wrong with that...so call me narrow minded or whatever you feel is appropriate but for me , this is not. I hope Frank has great information to cure you all. Goodbye and I pray for pain free lives for all of us...Frank It's all yours.
CommentHello everyone, I read Dr. Glazer's post and I thought it was full of compassion, and caring but he really didn't make mention of a male on this site and, of course I understand his position.. But I have to admit, I for one am leaving this site and will find one where male presence is not allowed...I have visited a few while this was all going on and I did not find one site with male comments...So therefore, goodbye to all of you who don't mind a male reading about your vaginal and anus problems...There is nothing wrong with that...so call me narrow minded or whatever you feel is appropriate but for me , this is not. I hope Frank has great information to cure you all. Goodbye and I pray for pain free lives for all of us...Frank It's all yours.
CommentCurious: No, it is not "all" mine. I did not win and you did not lose. I pose no threat and offer no cures. I wish you would not be so sensitive with my presence. My only interest in any other woman's vulva, clitoris, vagina, anus or anything else other than my wife's, is purely clinical. I get no thrill from reading of women in physical or emotional pain. You can think what you want but I'm a caring man not a pervert. If there were more good men involved I think some of the stigma associated with our genitalia would lessen. I know europeans are not so hung up on such things as we Americans. I think it's a shame more women are not at ease breast feeding in public for fear of critism or perverts. Personaly I think it is a very natural and beautiful thing, not sexual in the least. Sorry if you insist on leaving for a site that is not open to men, any contribution you could have made is lost. Why would I have to offer a cure to post here? Why can't you just accept me as a person and not demonize me because I'm a man? Let it go, start the New Year by saying something nice. There is enough room here for good men. I never said I was perfect and I have apologized in the past. Is there no room for acceptance and healing? Please change your mind, this is not my site because I am allowed to read and post. Thank you. Frank
CommentHi Frank. I'm glad you're sticking around as I am. These "women" can attack me too as one already has, but that's her opinion. Over the years, I've made life long friends with other Vulvodynia sufferers who have posted on this site. Those women know what I go through at times and vice versa. Those are the caring women who come to this site. Sue
CommentTo Sue: I appreciate your support and am glad you are staying but I wish these other women would stay as well. I'd like to give them the kind of credit I wish they would give me and that is they are here for good reasons. I'm a broken record (showing my age) but the whole male/female only thing needs to stop if we are to move forward as a people. I understand this is a very private and personal area to discuss openly but that is exactly what needs to be done. I'm self conscious and shy but when the need arises I seek help and do what is |
