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Commentwe have just archived our seventh vulvodynia guestbook and started our eighth. The guestbook continues to be one of the most popular pages of the website. Welcome to all and please leave us your comments concerning vulvodynia.com
CommentDr. Glazer, do you know of a Gyn. in San Diego besides Dr. Willems who knows how to treat Vulvodynia? I live inland and his office is a long way for me to drive. I'm amazed how many Gynecologists don't have a clue how to treat this condition. I had to tell my current Dr. how Dr. Willems treats Vulvodynia because he didn't know. Thanks. Sue
CommentI wanted people to know I saw Dr. Glazer for about five months and his treatment really worked for me. I went from having a lot of pain to none at all. It's really terrific!
CommentI would be grateful for any information about partners view on the subject of vulvodynia or any work with couples with this problem area.
CommentDear Dr. Glazer, my life is in chaos since my development of vestibulitus. I was a premed student and a runner but have had to relinquish both. I am moving from Chicago to Miami/Ft. Lauderdale next month and I am broke from my extensive medical bills. Is there a therapist you can recommend in the Ft. Lauderdale/Miami area?Any other suggestions?Thank you, Gretchen
CommentI wanted to let everyone know that in the NVA newsletter there is an article about a program that will be on Wednesday, April 7 at 10 pm. It is called Body Human 2000: Love, Sex and the Miracle of Birth. There will be a story about vulvodynia. Please pass on the word!!
CommentI contracted vulvodynia two years ago February but it wasn't diagnosed until seven months later. I'm happy to report I did NOT have the slice and dice surgery recommended by my ob/gyn, but sought homeopathic remedies and my own body's wisdom to make peace with my pain. I changed my doctor, my diet, my relationship, my boundaries, my attitude. It wasn't easy, but today, I'm virtually pain free except when I'm pre-menstrual and very stressed. Will the calm last? I don't know. It's one day at a time. My prayers for your relief from this enigmatic condition.
CommentI am so glad that I found this website. I have been suffering from lichen schlerosis for a lot longer than I have been diagnosed. I recently moved back to Oregon, and I was terrified about not finding a doctor that knew what this was, let alone what it is like to live with. I have been using a testosterone ointment and some days are good somedays are not. I am wondering if there are other options. I was only diagnosed, 9 months ago and I don't really know a whole lot about it. I don't even no if it is transmittable to other places on my body, or to another person, which has not helped me in dating at all!!! If anyone, ANYONE has more information for me, or if you have partners that can give me their take on living with someone with this I am really needing information, and would appreciate it more than you know. If I can stop crying long enough, I would also like to thank you all for your stories, I didn't get to read them all, but I did read quite a few, and while it won't completely cure my lonliness in this, I don't feel so all alone. If I could hug you all I would Thank you
CommentIF ANYONE HAS A CHILD WHO HAS BEEN DIAGNOSED WITH VULVODYNIA, I'D BE INTERESTED IN CORRESPONDING WITH YOU. MJELK@AOL.COM
CommentIF ANYONE HAS A CHILD WHO HAS BEEN DIAGNOSED WITH VULVODYNIA, I'D BE INTERESTED IN CORRESPONDING WITH YOU. MJELK@AOL.COM
CommentIf anyone has any iformation on allergic skin reactions and how long the skin can continue to itch after the allergen has been removed, I would be extremely happy to hear from you. I've itched for almost a year and a half now. I've been checked for all STDs--nothing. I just continue to itch. I beg for your prayers.
Commentif anyone knows of a good doctor knowlegable in treating vulvodynia/vestibulitis in the utah or salt lake city area please e-mail me. thanks so much!!!!!!!!!
CommentWhew! Am glad Dr. Glazer started another guest book.The other was really full. Which just goes to show how many people are affected my this terrible condition. It is such a shame there aren't more Dr. Glazers around.Keep hoping to see the condition featured on one of the Prime Time News shows.They sure got the Viagra info. on quick enough. For those of you who are new to this site it is a good idea to take the time to read All the messages posted so you can get an idea of the things that others have tried,and the procedures that do and don't work.As for myself- I gave up on trying to deal with the doctors available in my area.AS I stated before-there are simply not enough doctors like Dr. Glazer around!I had been in constant pain for almost a year.I had fallen into a deep depression and was full of despair.Tried the Zoloft a doctor prescribed and it was an awful experience for me.Best advise I have to offer is this (A) NO Baths-only showers (B) drink plenty of water-and I do mean PLENTY (C)When possible-pour tap water over vaginal area after urinating and only use a white name brand unscented tissue (D)I do not recommend the use of Astro-Glide or any of the other lubricants during sex.Especially vaseline.(E)I apparently had a bad reaction to the material condoms are made up of. Because my husband and I suspected semen to be a part of our problem,we tried the condom thing and it made matters worse and I didn't know things could have gotten worse at that time.It's also important to twice rinse your clothes,especially underwear.And only cotton undies when you do wear them.I try to wear long skirts and long dresses and ususally do not wear undies then.Nothing wrong with that as no one else knows and believe me it helps.Hot tubs,spas,saunas,pools,etc are all contributing factors in making the pain and burning worse.If and when you use these facilities,Immediately wash your vaginal area. Same is true with intercourse-wash,wash,wash!For those of you suffering at this time and unable to have sex-as I was for almost a year-try these simple things and see if it makes a difference.Of course if you are fortunate enough to have found a doctor-you would naturally follow his/her advise.I grew weary of test after test and with no medical insurance I simply could not keep going for more test that seemed to be going no where.I even had to spell Vulvodynia to one of the doctors.Another one was just positive I had Herpes-not!Once that theory was shot down-he was not interested in actually solving the problem.So I made up my mind to find a solution on my own.I know there is no sure fire cure at this time for this dreadful curse,but for the time being I am doing very well.Some days I feel the familiar symptoms flaring up-so I double up on my water intake and am sure to use water after urinating on the vaginal area.A spray bottle of water works well also.I do Not find that soaking in Aveeno or Anything helps at all.In fact soaking in a tub is a definite NO NO for me.Hope this will help some of you...If I can think of something I may have left out,I will add on a later post. For now I continue to pray for us all.Please keep the Faith and do not let this condition get the best of you.
CommentI AM VERY INTERESTED IN FINDING A DR. IN PENNSYLVANIA WHO IS KNOWLEDGABLE IN THIS SPECIFIC AREA. MY FOUR YEAR OLD IS ONCE AGAIN EXPERIENCING A PROBLEM
CommentHello everybody, I have been reading these guestbooks for months, I thought it was my turn to make a contribution. I have been suffering from vestibulitis for nearly three years now: I have burning and pain in my vestibular area (3,through 6 and 9 o'clock positions) when I'm touched, and also burning, itching and sometimes stabbing pains generally. It gets worse a few days before my period and also when I do anything that increases my blood flow (eg: drink alcohol). Also I often get mild cystitis-like symptoms but this may not be connected. When I first went to the Dr. I was, of course, diagnozed with Thrush although I didn't have any symptoms except the itching/pain. Later I was prescribed steroid creams which didn't help and might have made it worse. I have found some things that really help, so that it doesn't bother me much from day to day, although sex is still painful. The thing that seems to have helped most is only bathing the area with clean, cool water and not allowing any soap, shampoo, aqueous cream etc near it. Don't use any sort of ointments/lubricators either. I also wear light baggy trousers and double-rinse my underwear when I wash it; I use an enzyme and bleach-free detergent. No sexual contact, of course, also helps too. I have tried various diets which don't seem to make any difference, I haven't tried anti-depressants but feel it's unlikely that they would make any difference. My symptoms first began a couple of months after a big course of metronidazole (Flagyl) and I often wonder if this was a contributing factor: lots of other people signing the guestbook seem to have been taking antibiotics when their problem started, too. I would be interested in hearing from anyone else who thinks there's a link here. Vicky
CommentI thought I would feel relieved after finding a name for my problem after all these years, but instead I'm very upset after reading all the letters. I recently used Terazol 7 for what I thought was a yeast infection, but after 7 days I tested positive for BV. Then I took 7 days of Flagyl for the BV, but I still had pain and severe burning. Then I took one day of Cleocin but went in to see if I had yeast and needed yeast medication instead. The results showed no BV and no yeast, but they are culturing the yeast now. My doctor also said that my tissues didn't look irritated. The burning seems to coincide with the acid level of my body. The first time that my bladder went bad (spasming, frequency, urgency, and a blubbling that I couldn't identify as bladder or vaginal) was preceded by acid reflux and acid stomach. I had an IVP which only showed a moderate amount of urine left in my bladder, and a cystoscopy which showed a normal bladder. I have symptoms of IC, but like I said, the cystoscopy showed otherwise ( the urologist did distend my bladder with water). I get UTIs about once or twice a year. I seem to constantly have BV or a yeast infection. A few years back, I had two kidney stone passing incidents, each one year apart. And about a year after that, I had "sand" when I urinated. But soon after no "sand" was detected. I was diagnosed with Irritable bowel syndrome 20 years ago (I'm in my 30s now), but as long as I eat enough fiber, I don't have any intestinal pain. My skin is getting more sensitive, and my allergies are getting worse. Last spring I got hay fever for the first time. My sinuses bother me most of the time. I've had a small to moderate amount of back problems (sciatic nerve and lower back pain). And since eveyone else is mentioning the tailbone thing, when I was in 7th grade, I did a handstand and landed on my head. I couldn't sit down normally until a doctor put everything back in place. I have had two children, and I am gaining some weight as I am aging. I think this is messing up my pelvic floor muscles and causing some of my problems. I notice that to some degree, my symptoms of pain and burning decrease when I contract these muscles. Severe stress also caused severe burning when my son was hospitalized, but I lead a fairly stress-free life. I have had trouble in the past with panic and anxiety disorder, but that was about seven or eight years ago. DOES ANYONE KNOW OF A KNOWLEGABLE AND HELPFUL DOCTOR IN THE SEATTLE /EASTSIDE AREA? The two OBGYS's that I've seen haven't given a name to this problem. They just say to use basis soap, no fabric softener sheets, and watch the caffeine and sugar. I've have this problem off and on over 20 years, but it's getting much worse now. I would very much appreciate any help. Lisa
CommentHi everyone, I am so happy to have come across this website! I have suffered from vulva vestibulitis for 10 years. I was diagnosed in England were I was treated with many different therapies. I will list the treaments I have tried, maybe there will be some sufferers who can benefit from them. I had a course if interferon injections for 14 days which I injected into my stomach. The treatment didn't cure me, but improved my condition by about 60%. I have used various creams one which I found to be soothing was a herbal cream called calendular. I have used hydrocortisone, but only found mild relief. A doctor in the UK told me to take a 1000mg Evening Primrose capsules, which seemed to help a little. I have also used lydocain gel to numb the area, which was a waste of time for me. Alongside all this I have been through the whole oxilate tests, doctors found I did not have a high oxilate level in my body, but it may be worth looking into.It is also a good idea to get tested for allergies, I was and the Dr's found I wasn't allergic to the things they tested me for. But I am now considering getting tested for other things eg food allergies. At present a Dr has told me to take 1000mg of calcium a day as a vestibulitis patient found it to give her relief. I also take 400mg of acidophilus daily. This is 100% natural and is what is found in live yoghurt. It helps me have less yeast infections. The less we have to take treatments for yeat infections the better. I was told that the preservatives in such medicines can trigger and make vestibulitis worse. I find I go through good months and bad months. In 1997-98, I went to work in Hawaii and found I was so much more relaxed. I was 100%pain free for almost a year. Since moving to Virginia and stress levels rising again I have found that I am now going through a rough time again. I had BV then a yeast infection and now I am suffering again. Stress diffinitely makes this skin condition worse. I have taken up Yoga in hope that it may help. I also tryed reflexology, this treatment seemed to help but was to costly. Has anyone out there got any new things to suggest? I am interested in the biofeed therapy, has anyone tryed it? Does anyone out there have any information on the connection between birth control pills and vulva vestibulitis? I find it to make my symptoms worse. Please try to stay as optimistic as you can, I try to focus on positive thinking. I know that if I get upset and stressed with this that my symptoms/pain doubles. Look forward to hearing from you.
CommentHello!!! I am so happy that I came across this websight! I have been reading everyone's comments for the last 2 hours. I can't believe so many people are going through the same living hell as myself. It is so comforting but also so discouraging. I am 24 years old and have had vulvodynia for 8 months. My story began when I started itching and burning and just like most of you I was told I had a yeast infection. After months of taking different anti-fungal creams my doctor was convinced I had an STD and proceeded to test me for every disease imaginable. Well, after all the tests came back negative he told me there is nothing he can do for me. At this time my symptoms were unbearable. I had constant pain, itching, throbbing, and a whitish discharge. I then started having burning, shooting pains into my thighs. DOES ANYONE ELSE HAVE THESE PAINS IN THEIR LEGS? It was then that I went to another doctor who told me I had vulvodynia but she didn't know how to treat it. I have realized that if there is going to be some cure for this problem it is going to come from us experimenting and communicating with each other. It is obvious that most doctors are completely ignorant on the subject. I started going to a herbalist and am going to try the low-oxalate diet and calcium citrate suppements. If any of this works, I will let you all know. This problem has ruined my sex life competely, I JUST WANT TO BE A NORMAL 24 YEAR OLD! If anyone knows of a doctor in the northern N.J. area please let me know. Otherwise, please feel free to write me and vent. Good Luck to everyone!!! KAREN
CommentI believe I am a sufferer of Vulvodynia. After reading on several articles and information, I meet alot of the symptoms and past history. What can I do? I am from the Lubbock, TX area.
CommentI heard about vulvadynia on a CBS special Body Human 2000. I was so glad to hear someone else talking about this. I have suffered from pain for four years and seen 4 different doctors, each of them telling me something different. I do have HPV, but none of them have been able to tell me whether or not that is causing my pain. I was amazed when I read about the research of this being genetic. I have a first cousin who is also suffering like I am. I am newly married and this is definately causing a problem. Thankfully my husband is very caring and understanding. But I am willing to try anything to stop this pain. Any advice is welcome!!!
CommentThis is my 3rd entry. I am unfortunately a sufferer with Vulvar Vestibulitis going on 3 years. I experience burning pain constantly along with painful intercourse. I have extensive knowledge on this disorder, as I have read everything and anything, and I have seen over 20 physicians. I ,too, have tried many things. Lots of creams, antidepressants, anti-epileptics, herbal treatments, calcium citrate and the oxylate diet. My urine was tested by Dr. Solomon (Vulvar Pain Foundation can give you info on him). I was found to have high levels in my urine. I faithfully tried the diet and calcium for 2 years. I am not better from it, but it does not mean that you who have not tried it, to not do it. I am currently doing extensive PELVIC FLOOR work with a fantastic physical therapist who specailizes in pelvic floor dysfunctions. We also use ULTRASOUND in the vaginal area and I get pain relief from this. My P.T. recently went to a seminar on Vulvar Pain in San Diego. The take home message from the meeting was that these therapists believe that the pain is due to nerve entrapment. I was thrown from a horse as a youngster. I landed on my tailbone. So, we are focusing on stabilizing the SI and working hard on relaxing and strengthening. We use a vaginal sensor that is smaller than a tampon. This biofeedback is helping. From 1 year to now, I am better, but I still am in pain. So, hopefully this information will be of use. I wrote Dr. Glazer and asked him if anyone is using ULTRASOUND for pain relief. To his knowledge, no one. If you are trying ultrasound, please email me. Good luck out there. Oh, and to reiterate on what someone said earlier, CBS put on a program tonight called BODT HUMAN 2000. There is a web site BODYHUMAN2000.COM. and they actually had a segment on VUVLODYNIA. Praise God that the word "VULVODYNIA" was actually used. It only highlighted how surgery helped her and did not go into other treatments. At least we got some media on our problem and the show's host James Brolin called it a DISEASE. We've come along way baby. God Bless and keep fighting for a painfree life.
CommentI was not aware of this condition until I watched a special called Body Human 2000. I in fact think that I had this condition. When I was married to both of my husband intercourse was so painful that I could hardly stand it. So natually it was not enjoyable. I went to a sex therapist and a hypnotist to resolve the problem. I thought for sure it was all in my head After I was divorced I had a vaginal cuff revision My GYN said that I needed it and so I let him do it. At this time it is no longer painful for me to have intercourse.
CommentI would like to get some feedback from husband's or boyfriends of women who have vulvodynia. How to be supportive in a constructed way and how to deal with the emotional stress it puts on a relationship. We hope to have children, but we have not been able to have intercourse for almost a year. My wife is going to a physical therapist once a week. I also have used the technique shown to us by the therapist to massage her vulvar floor muscles. I have not seen any men write in to this guestbook yet I hope I get a reply.
CommentI just learned about Vulvodynia from the show Human Body 2000 broadcast last night. I never knew such a condition existed. It literally brought tears to my eyes when I heard this women describing her symptoms and how it has desroyed the intimacy between her and her husband. I too have been plagued by painful intercourse for a couple of years now. The relationship with my boyfriend (future fiance) is slowly deteriorating. I have been to my ob/gyn so many times over the past couple of years with complaints of severe burning and painful intecourse. After too many cultures, biopsy's, STD workups, and even a cystoscopy {which have all been negative} I am always told the same thing- there's nothing wrong!!! There is something wrong and this isn't just in my head. I am 26 years old and want to have a normal healthy sex life. My boyfriend and I are so frustrated. HELP- I would like to find a doctor who knows about this condition in my Buffalo, NY area!!!- if anyone can help or would just like to talk please contact me.
CommentHi everyone. It has been a few months since I posted and thought it was about time. There is hope for this awful disease. I can finally say that I am 100% cured. In June of '97 I was on my honeymoon with my husband when my awful ordeal started. Like many of you I was on a course of antibiotics for a sore throat. Our second night on our honeymoon we made love. I awake the next morning with an awful burning sensation. I lay in the bathtub for hours just bawling. My husband is a nurse and didn't think this was right. We also had had 5 good years of intercourse before we were married. We went to a walk in clinic in Florida and I was told I had a urinary tract infection. I was put on another course of antibiotics. A few days later we went home and I was fine for about a month. Then I started to burn again. I went to see my nurse practioner at my OB/GYN's. Before I had gone in I spoke with my older sister. She started with the same symptoms about 2 years before me. After 8 months of suffering she found a specialist in vulvar disease. She was diagnosed with Lichen Schlerosis. I took the pamphlets into my doctors office and showed them to the nurse. She wouldn't believe I had it because my vulva wasn't whitish in appearance. I was RED! She just dismissed it as a yeast infection and sent me home. A few days later I was put on more antibiotics because she said I also had another UTI. I only kept getting worse. Sex began to become very painful. It felt like knives cutting me. When I wasn't getting better my sister told me to get a referral to her doctor. I did, and it was the best thing I could have done. I too after being biopsied was dianosed with Lichen Schlerosis. I was placed on Estrace and a topical steroid "Diprolene", to make the skin disorder go into remission. Once the daily burning stopped, I was still having pain with intercourse. I found I had vulvar vestibulitis. In February of 1998 I opted for a vestibulectomy. It is a good thing that my husband and I didn't have the internet at that time because I might not have chosen it had I read all the controversial opionions on it women have posted. I knew nothing! Luckily I had a COMPETANT doctor. I had 11 glands in all that extended an inch and a half deep. They were removed by laser. Then my hymen was also removed and my perineal skin was advanced more anteriorly and sewn inside me. It took about 5 weeks for the swelling to go down. I looked so gruesome I never thought it would! After 3 months we got the go ahead to have sex again. It was much improved, but still was a little uncomfortable. Because of the discomfort I no longer had an interest in sex. We typically only had sex 1x/month since 1998. I returned to the specialist in January of 1999 because my vulvar skin started to burn again. (That is the thing with lichen schlerosis; it goes away with treatment, but will eventually some day start again. When it does you just have to be put on medication to make it go in remission again). I was very depressed because our sex life had gone from very active to non-existant. She said it shouldn't be that way and sent me to an OT for biofeedback. I was very sceptical because it just seemed so hokey. After 2 months though, and daily tensing and relaxing exercises I can finally say I am 100% better. My husband and I have had more intercourse this last month than we have in 5! In this week alone it has been 3x. We are just so thrilled to have our lives back. I also went back to the specialist Wednesday and have gotten the go ahead to start having a family. I just wanted everyone to know that there is hope. I'm not saying that surgery is the only way to go because I have read others' horror stories. I truely only trust my specialist. I promise anyone that if you see her she can help you too. We should not have to accept non existant sex lives and burning vulvas. It is just not acceptable! I also emailed CBS tonight and asked them to air a story strictly on Vulvodynia so that the medical community becomes more aware of this condition. I encourage others to do the same. We need to be heard! When I first started with this we didn't have a computer so I thought that I was a freak and what I had was really rare. But, we all know that from reading each other's stories there are many of us out there. I pray that everyone finds some answers and relief to there pain. I just wanted to give you hope that there are some success stories. You need to remain strong. If I can help anyone I will. I have told others the only way I can justify being afflicted with something so horrible is to help others who are in a place as bad as I was. God bless all of you.
CommentAre there any specialists in the Tucson area that can treat this difficult probelm competently?
CommentIs there anyone who knows of a doctor in the Akron/Canton Ohio area who is knowledgeable and knows how to treat chronic vestibulitis? I also suffer from fibromyalgia. My doctor says she has no other options for me but surgery. Forget it!!!! I would appreciate any information provided.
CommentHello, I have suffered from vulvar vestibulitis for at least 7 years. I went to many ob/gyn doctors who mostly told me to go home and relax, the pain during intercourse was all in my head. One even gave me pain killers to take before we made love! I am very lucky that my husband is very understanding. Seven years ago I finally found a doctor who told me there was a physical problem that could be fixed with surgery. I didn't question, I just said do it. My surgery was successful in that the pain is 90% better. My problem now is how to undo all of the pyschological effects of years of pain. We have been to counselling several times. Will I ever be able to have a normal sex life?!
Commentdoes anyone know of a compassionate doctor who treates vulvar problems in the San Francisco Bay Area?
CommentPlease, I' m a vulvodynia suffer, and I'm looking for friends with the diagnosis in Charlote, NC I would appreciate if someone can help me!
CommentFirst, I would like to thank Dr. Glazer for replaying my e-mail. I really aprreciate the time and attention you gave to me. God Bless you ! Second, I would like to meet other vulvodynia sufferers in Charlotte, NC pewterrose@aol.com
CommentWell, I'm glad to say that my Vulvodynia is under control with Estrace cream and calcium citrate. If only I could say the same about my menopausal symptoms! Does anyone in San Diego want to get together and talk? Let me know. Sue
CommentPlease tell me how ot get the proper diagnosis of vulvodynia. I have spent the past 25 years in pain and no one has been able to diagnose my problem. I am desperate for any help and advice.
CommentI am amazed by this site! I started having problems during my pregnancy in 1997-98, don't remember exactly, i just remember that sex became extremely uncomfortable at one point and one of my midwives explained to me how the body, muscles and ligaments will sometimes change suddenly...a very realistic and reasonable explanation. My son will be a year old on the 28th of this month and it is stillimpossible for my husband and I to have sex....he is very!! frustrated needless to say. I had been treating myself for yeast infections with OTC meds...thinking that was my problem, this worked temporarily and finally two months ago I went to see my primary midwife to see if she could help with the 2 problems I was experiencing...chronic yeast infections and painful intercourse. She swabbed me and it came back negative...the swab just about put me through the roof and she told me that she felt I had VV....how lucky am I to have someone knowledgeable about it. She gave me samples of Premarin to use and a scrip for Xylocaine (haven't touched it yet...the thought is too painful!). The premarin has been somewhat successful in relieving the immediate dryness...but definitely not a cure. She also conferred with one of her partners in the practice (from Britain) and she felt that the symptoms I am exhibiting are definitely VV. I have received the name of a doctor at Oregon health Sciences University who is studying this and what we have decided is that I will try the Premarin for 2 months, that will give my birth control (Depo) time to be out of my system...am due for a shot at the end of the month and am not getting it...see how I am responding at that time and then refer me up to OHSU if necessary. My husband and I would like to try and have another child in the next year or two...but it seems like a mountain that I am dealing with. I am very blessed to have the son I have and will be just fine if we can't have another one....does anyone have any suggestions for this? I feel very fortunate that I have a great relationship with this midwife, that we can talk openly about this issue and that she is willing to learn more about it and work with me. I know that not all practicioners are like that. I have already sent her some research that I found and will be sending her more, including this website. Comments and suggestions are welcome....good luck to all of us!
CommentI am 27 years old and have been suffering with vulvodynia for about 8 years. The only relief I have gotten is with the calcium citrate. However, I am looking into getting the surgery. I would apperciate any information about surgery. Is there anyone out there who has had the surgery? Has it been successful? Jillwinter@AOL.com
CommentOkay, my turn to contribute. There's something I've wondered about but too embarrassed to ask. Have any of you, in the more carefree days of sex, (gosh, did they really ever exist?) - anyway, did any of you ever use a vibrator? At the time I used to wonder if this could eventually cause damage, i.e. chronic vulvar pain. I have had the same kind of history as most of us, frequent yeast infections, irritable bowel, and a hysterectomy 4 years ago. I don't remember having the burning until after the hysterectomy. But I passed it off as not enough foreplay or not enough lubrication or something. Anyway, the burning was present during sex only. But after getting a bad bladder infection in June, 1998, followed by yeast and vaginal bacterial infections, etc. that's when the generalized pain really took off. At first, I had hopes it would go away once the infections were cured. BUT the infections WERE cured, and still here I was w/so much pain that I lost my job, couldn't sit, can't wear jeans. Oh, and sex, forget it. I was in so much pain, I could barely stand to touch the area even to put diaper rash ointment on it. Okay, so anyway, see? Yes, my symptoms and the start of it all are very similar to many of yours. But I have recently thought about the vibrator and wondered if there is some connection. I mean how good could that have been for the nerves in that area thats loaded w/sensitive nerves. I'm not signing-I'm too embarrassed, but please, please any of you w/similar experiences, please respond on this guestbook. Thanks, and my prayers are with all of us!
CommentI have had vulvodynia over 7 years and just discovered this site. Two years after the onset, I found out about the Vulvar Pain Foundation in Graham, N.C. phone 336 226-0704. They put me in touch with Dr. Solomons in Denver, who has an ongoing vulvodynia research project. He analyzed my urine. This was all done through the mail. He sent a collection kit for 10 samples in a 24 hr. period. I sent it back overnight. Half of the samples were abnormally high in calcium oxalate. Dr. Solomons recommended a lot oxalate diet and calcium citrate taken at specific times of the day. He later added glucosamine. His phone is 303 388-7140. This treatment provided a great deal of relief but I still had some burnining. About a year and a half ago my doctor prescribed estrogen cream to be applied topically to the vulvar skin twice a day. I use ortho-dienestrol 0.01%. This has made the most dramatic improvement. It is very soothing and eventually took the burning away. It itches at first as the skin begins to knit. My doctor said my skin looks normal now. A daily sitz bath with warm (not hot) water with Aveeno oatmeal helps. Please contact me if you have any questions. Gail
CommentI have severe endometrosis need to find DR in Phila PA area Im in severepain HELP PLZ c_manz@hotmail.com
CommentI am 28 years old and have been suffering with vulvodynia for the past 9 years but I wasn't diagnosed until a year ago. After reading many entries in this site, its comforting to know I'm not alone. I'm really glad I found this site. My condition started 9 years ago as a major yeast infection after taking 2 antibiotics at the same time. After that yeast infection, things were never the same again. I started having painful intercourse, chronic vaginal itching and there was always a varying degree of "vaginal irriation and discomfort". I was checked for STD's which were negative. My tests kept coming back as bacterial vaginosis and yeast. I was put on every yeast medication and antibiotic for the "general bacterial infection" out there, but I never truely got relief. On top of the vaginal stuff, I kept getting many UTI, so again more antibiotics as well as explanations from my doctors to avoid soap, tampons, douches (I never did douche) etc.. One urologist even put my on preventative antibiotics to be used prior to intercourse. Nothing helped. I started undergoing various medical testing to figure out the "true problem", besides the usual cultures and treating for infection. I had a cystoscopy which was negative, Pap smears, colposcopy, pelvic and abdominal ultrasound, upper GI, barium emema, pelvic MRI and lumbar MRI which were all negative! Nothing found. Oh, I also had a vulvular biopsy which showed "chronic inflammation". I was given a steriod cream for that, but little relief. After going thru various urologists, ob/gyns, internists, psychologists, I turned to accupunture and biofeedback, with slight relief. Right now I'm seeing an osteopathic doctor, who dx my vulvodynia to be neurological an "irritable sympathtic nervous system". He put me on high doses of daily neurontin and prozac (both I've been on for a year) and it's helped some but not a major improvement for me. I've also been taking calcium citrate with not alot of improvement. I've recently gone thru 3 sympathetic nerve blocks which again have helped some, but no big relief. I still have the daily burning vaginal pain and irritation, with urinary symptoms of burning and frequency and very painful intercourse. I haven't been able to have intercourse with my husband in 2 years--it's extremely frusturating. Now I'm at the point where I'm considering surgery because, I haven't found relief any other way--my current doctor has been suggesting a sympathectomy (remove the nerve roots that feed the vaginal, vestibular area). I'm looking for any other suggestions! One thing I haven't tried, which I've read is the estrogen cream. I'm considering calling my doctor for that. If any one has suggestions or insight or just wants to share with me, it would be greatly appreciated! Also, ANYONE KNOW OF A PHYSICIAN WHO SPECIALIZES IN VULVODYNIA IN THE NORTHERN VIRGINA/DC AREA?
CommentWhile I have not been diagnosed with vulvodynia, I think I have this condition. I have been suffering (like all of you) with pain and burning for about one year. I too have been wrongly diagnosed with yeast infections and bacterial infections and all other tests are normal. I have used every cream out there. So far all the doctors I have seen keep getting frustrated and sending me to other doctors. I live in the Chicago area and really want to find someone here who can help me. If anyone knows someone I would appreciate the help. Thanks in advance to all of you for sharing your stories. Holly
CommentI was 19yrs old when I was dx by vulvodynia. I had a wonderful world renown MD. until he was sued. His name was DR. Richard Reid. Does anyone know where he is. He really helped me. After 5 laser surg, interferon inj, ultrasound and many other tx I still suffer from it, especially during intercourse with my husband. I have yet to find anyone who will tackle this condition in Michigan. DR. Reid was from Austraila and lost his practice because of this. The women who sued were just not happy people. He was honest and he was one of the first MD. to take us on. please if anyone has information about him let me know. I am a registered nurse and I am afraid to let anyone else touch me regarding this. thanks!
CommentHey gals,
CommentHey gals,
CommentAfter reading the entries in the latest guestbook, I don't know whether to laugh or cry. I am 24 and have had vulvar vestibulitis for over six years now, but like most of you was diagnosed only two years ago. I have seen several doctors during this time (not by choice - but due to the fact that I have moved around alot: I am originally from Canada and am now in the UK). Unfortunately, I've not found a cure yet and am beginning to wonder if I ever will. Sometimes I feel that not knowing was better. It's depressing to know that there is a name for this awful disease, yet no cure. Anyway, here's my story: Six years ago I had several yeast infections one after another. My doctor at that time thought it a good idea to treat me for something (I don't recall the name) that I might be carrying that was causing these infections. I was carrying this 'thing' albeit that it is harmless, and so began an initial ten day treatment without luck. I then completed a second ten day treatment before my doctor told me not to worry, I was simply a carrier and there was nothing that could be done. My VVS began immediately after that treatment. It began as mild discomfort during intercourse. Of course my doctor found nothing wrong when I complained of symptoms (discomfort and dryness) and sent me home with a lubricant. Unfortunately, it very quickly became obvious that sex was no longer enjoyable for me. However, at this point I began to think it was me!! I even went to the extreme of questioning my sexuality to the point of not dating men for two years! Admittedly, I didn't have any problems with intercourse! I do however have longlasting emotional scars that I'm not sure will ever go away. After two initial years of pain and agony, two years passed where I didn't even think about it. Eventually however, when I found myself involved with a man again the problem quickly arose. I had one month of mainly pleasurable intercourse until overnight the pain came back with a vengence! For the last two years I have not been able to have any type of penetration whatsoever. I immediately began to see a doctor and eventually found someone who knew about VVS. My first treatment was a six week dose of Premarin cream (which now that I know where it comes from will not use again). After three weeks I tried having intercourse once more and had the most memorable week of sex ever. I was so elated to be able once more to have sexual relations with my boyfriend that I think we must have had sex at least once every day. My joy was shortlived however, for as quick as the pain went away, it came back. After I completed the other three weeks nothing changed. I saw my doctor once more and she was about to prescribe another cream, but at this time I moved across the country. I was able to see another doctor who I wish I could have began treatment with but again moved before it was possible. She did however, get me on-line to Dr Glazer's site and it has helped at least knowing there are other sufferers out there. Since coming to the UK (where I expected treatment to be abundant...) I have been a victim of the 'passing the buck' syndrom. My consultant here, immediately diagnosed me with vulvar vestibulitis and sent me home with Trimovate cream. However, after only a few doses I began to feel an excruciating burning sensation from somewhere 'down there'. I find it difficult a lot of the time to distinguish where the actual pain is coming from since it is everywhere. We discovered that my urethra was extremely enflamed and irritated and was causing this new pain. For the past year now I have had daily burning sensations, but not from the vulva!!! My pain stems from the urethra and even in the anal area! The only time I ever experience pain in the vulva is by penetration, and since there is none of that, the pain isn't there. Because of the problems with my urethra however, I was sent to a urologist. Eventually, I even had a cystoscopy to no avail of course! I also saw a dermatologist who confirmed that the actual skin was healthy. These two referrals took over 8 months of waiting!!! I am so frustrated because I feel like it was all a waste of time and that I could have told my doctor who referred me the same thing in the beginning! I am trying to be patient, but I really think it's best for me to find another doctor. My current doctor is a researcher at the Royal Free Hospital, Hampstead, London, UK. Unfortunately, I feel that she is more interested in finding a cure for herself than for her patients!! I am despairing but am trying to find some sort of hope from your stories. My two year relationship did not survive the stress of VVS and the last thing in my mind is to even attempt another relationship knowing I have this dreadful disease. I thank you all for listenting to my story (those of you who actually read it all the way through) as this is probably the first opportunity I have had to actually 'speak' to someone who knows what I am talking about. I am not really looking for a miracle cure, although one would be nice, but would be greatful to anyone who just wants to talk! Please feel free to e-mail me with your thoughts! Good luck to everyone! Crys
CommentI am writing with the hope that anyone with a similar problem might get the correct diagnosis and treatment plan that I have finally found with Dr. Howard Glazer. My diagnosis is Levator Ani Syndrom. It is a pelvic floor muscle disorder. I have had this disorder for over seven years. I have been to eight (proctologists & O.B.G.Y.N's) specialist whose opinions ranged anywhere from you have a "back problem," "it's just in your head", to having one doctor actually tell me that I must have been molested as a child! My symptoms include unbelievable pain in the behind area due to muscle spasms of the pevic floor. I finally found out about Dr. Glazer using the internet while researching what I knew had to be a "real" disorder. At the risk of sounding dramatic, Dr. Glazer has been a miracle for me and my husband. He has diagnosed my disorder and devised a plan to try and lessen or stop my pain. More than this, however, Dr. Glazer has been one of the most kind, open, humanistic individual I have ever worked with. After talking and being examined by so many professionals who were unable to help me, I had become, along with being in pain, very emotional about my disorder. Dr. Glazer was so understanding/empathetic about what I was going through. It can be so hard when you once had a "normal" and pain-free life to continue searching for a cure, especially when professionals tell me they've never heard of such a disorder and cannot help. I want to take this opportunity to thank Dr. Glazer for all of his work in the field of pelvic floor disorders. I can only imagine what a stressful field this is working with people who are in a great deal of pain. I especially appreciate what he is doing to help me. I can't say for sure (it is too early in my treatment) whether I will ever be completely cured, but I can say I know I am improving, and that this is the first time in over seven years of searching that I have finally found hope through Dr. Glazer and his treatment plan. If you have any personal questions to ask me please email me any time. Thank you Dr. Glazer. Sincerely, Kim Palermo
CommentI am from Sweden. Is there any woman from Scandinavia out there? It feels so great finding this page. It means very much to know that you're not alone! This page has given me so much information! IS THERE ANYONE OUT THERE WHO WANT TO WRITE TO ME? I SUFFER FROM VULVAR VESTIBULITIS. I'D REALLY NEED SOME SUPPORT.
Commenti self diagnosed myself last week after stumbling upon literature for vulvodynia. i have been tormented by symptoms for 16 months now. i have been glued to this site since finding it this a.m. i just wanted to thank everyone that has contributed comments about their conditions. i have new strength and confidence to fight the fight - not just for me - but for all of us.
CommentI'm 16 and I just saw the Body Human 2000 special about vulvodynia. For a few years now I've experienced burning and sharp pain whenever I attempt to use tampons. I've seen many doctors and they've all told my it's a yeast infection and that everything else is normal--but I think something's just not right. I'm beginning to think vulvodynia may be what I have since a lot of the symptoms mentioned in the program rang a bell. If anyone has had a similar experience or has any advice for me I'd appreciate hearing from you.
CommentI recently saw a news program on one of the major networks that featured a couple. The woman had vulvodynia. The M.D. featured used surgery to solve her problem. Do you know who he was? Also, I am a nurse practitioner in gyn. i had never heard of vulvodynia until the news program I mentioned. The very next day I had a patient with the exact symptoms of vulvodynia. I wasn't sure where to refer her as she had been put off by quite a few doctors. I found your web site and I found it a good place to get her started. Can you also recommend anyone in Ct.? She lives in new london county or surrounding area. Thanks and the internet is such a help for so many!
CommentHello everyone, its so good to see so many people educating themselves about this disorder. And cheers to the only male e-mail I've read on this site This is my second entry. I have been diagnosed for almost a year, but have suffered for over two. I am lucky in that I only experiance pain during intercourse. My heart goes out to the women who suffer with VD daily. If anyone knows of any specialists in BC or AB, I would appreciate you letting me know. Preferably in Calgary. I would also love to know if there is any Canadain literature or associations. Keep up the fight everyone!
CommentI am so sorry to see that there are so many women who suffer as I do. I have found all that I have read on this site to be fascinating. There is no cure, no treatment works the same for everyone, be it therapy, oxalate diet, steroids, or surgery. Some have benefitted from surgery and some are worse off from it. I follow a slight oxalate diet, I used a steroid cream Desowen 1% and als mineral oil. No pants, only skirts or dresses and no underwear at nighttime for sleeping. I got quite a bit of relief. When I got pregnant in October all symptoms stopped. The raised skin on the vulva is still there but dormant for now. I can only use mineral oil for now. I am going to ask my dr. for a cesarean. One doc told me not to have a episiomty but to do exercises instead. I am due in june. So Instead, being that sex and a vaginal exam are super painful I should let a baby rip me apart down there and make it worse? This is incurable, only hormones have stopped it temporarily, I don't want to lose the relief I had found by having a vaginal birth. I have read some women got vestibulitis after giving birth, and one said she did do it vaginally. But why take the chance? I'ts my life and my body. Theses docs go home and have no idea what a burning crotch is like, but we do. I am hoping someone who has experiences with pregnancy and birth with vulvodynia will write to me. I need evidence to present to the docs as to why I feel a c section is necesarry. If the appt doesn't go well I will be contacting a lawyer about my rights. I will give updates if any one is interested in the legalitiies should it happen. I just can't stand crying everynight in fear of worsening the condition, It's all I think about. Thanks for letting me sound off and good luck to all of us. May they quickly find a cure!
CommentHello everyone, I have contributed my story to the guest book before but I now have an email address and would like to talk to other women with this terrible condition. I am only 21 years old and have suffered from vulvodynia for 2 1/2 years. It all started with yeast and bacterial infections which started shortly after going on the birth control pill. I have been diagnosed with HPV though I don't have any symptoms of it. I, like many of you have been on every anti-fungal, anti-viral, and a lot of other medications that you can think of. I unfortunetly had the surgery (the doctor removed my vestibular glands) last year. That was the worse mistake of my life. I am twice as bad now. I only did it because the doctor promised that I would be 50%-75% better. Wrong. Anyway my boyfriend has stuck by me the whole time. It is so hard to be so young and yet not normal. I envy my friends and every other healthy woman. This condition puts so much strain on a relationship and every other part of the womans life. Currently I am on Elavil. I'm going to get checked for IC soon. My doctor (#15) tells me that approx. 70% of vulvodynia patients have IC also. Well that's where I'm at right now. I would love to hear from anyone that wants to talk about this condition, until then keep the faith and take care.
CommentHave you ever heard of getting Vulvodynia from an allergic reaction from IVP DYE and bedadine? I came out of an operating room this way. I Had nothing wrong with the vulvar area before the IVP DYE MY LIFE HAS BEEN DESTROY
CommentHi Trish: I've had IVP's done many times to locate kidney strones. Maybe there is a connection to the dye and Vulvodynia. I've never thought about it. What are you doing now to relieve the pain? E-mail me back if you'e like. Sue
CommentHi Trish: I've had IVP's done many times to locate kidney strones. Maybe there is a connection to the dye and Vulvodynia. I've never thought about it. What are you doing now to relieve the pain? E-mail me back if you'e like. Sue
CommentHi Sue the dr.s have me on pain med they help to some extent I WOULD RATHER BE DEAD THAN LIFE THIS WAY THERE IS NO LIFE LIVING LIKE THIS I HAVE LOST EVERTHING BECAUSE OF THIS
CommentDr.Glazer, i have read various articles about this condition i believe i may have. my concern is that i've read about vaginal birth as a potential cure to the pain, but i want to know what concerns you have about carrying a baby up to delivery for a woman under this condition... thanks for your time, Valerie Barton
CommentThis was my first input to the website, so now that I know how it works, I'd like to get more info from anyone. I am 23 and have only been married 6 months. I have not been diagnosed for this condition yet, but I've been to 5 doctors in the last year who are convinced it is yeast/bacterial infections that I'm experiencing. After reading material from this website I am convinced there are answers out there for me--Thanks to all of you for your personal stories that help me to relate to someone. I AM CURRENTLY LOOKING FOR A GYN WHO MAY SPECIALIZE IN THIS CONDITION SO I DON'T HAVE TO START OVER WITH ANOTHER DOCTOR ON MY HISTORY OF PROBLEMS. DOES ANYONE KNOW OF SOMEONE IN THE STATE OF GEORGIA (where i live now)OR IN MISSOURI (where my hometown is)??????? I need help and haven't been able to find a doctor who has ever heard of this before...as many of you also experienced. Thanks for the help! Valerie
CommentDear Trish: I understand how you feel, but please don't give up hope. Keep in touch with me and maybe we can give each other moral support. I didn't think I'd get better either, but I have. Has your Dr. suggested a Estrace cream or calcium citrates supplements. Write back. Sue
CommentMy suffering began in Aug. 98. I had vascular laser of the vulva in December 98. I am glad to report that I no longer have daily pain and burning. I still, however, have "contact pain". My doctor is recommending a vestibulectomy. He has lots of experience, and his success rate with this is above 90%. If you have had this done and it worked for you, please e-mail me. I'm really scared, but think this is my only chance to be completely normal again.
CommentI am 24 years old and have been suffering from vulvodynia since I was about 15. I finally went to a doctor at age 17. Although I didn't find out what I was suffering from until a few months ago. It worried me so much not knowing what was wrong with me. My husband was not very supportive at first, but has just now realized what I'm going through. He still gripes alot, but not to the extent as before. I have tried a low oxlate diet and I have been taking calcium citrate, which help at times. Intercourse is still extremely painful. I also have a lot of stomach pains that I am not sure if they are related. I did read that someone with this suffered from irritable bowel, which my doctor said I could have. If anyone knows more about some things I can do to treat this that has worked for them, please e-mail me. I need all the help and information I can get.
CommentI really appreciate the personal comments you all have shared about your experiences and treatments with vulvodynia. It is helpful to have someone to relate to and validate so many of the feelings I have experienced. My heart goes out to anyone who has suffered from vulvodynia or vulvar vestibulitis. I have only noticed a few times someone has mentioned alternative treatments. I would like to strongly encourage anyone to check out other options before resorting to the invasive medical treatments(surgery). I was very skeptical at first, but was desperate and my husband encouraged me to try acupuncture. It worked. I am 99% better. Within a couple months, my vulvar pain is gone and I am able to have pain free intercourse. I would have never hope for such results, just some relief. I feel blessed and want to provide some hope that it can get better. Like I said before, you have nothing to loose with acupuncture, and I feel it was the only thing that worked after 2 1/2 years of every treatment out there(except the surgery which I had scheduled at one time). If anyone wants to discuss what was involved with the acupuncture please write me. I truely relate to all of your stories and pray that you all will eventually find some relief.
CommentI am 19 and have recently been diagnosed with vulvo- vestibulitis. About a year ago I contracted herpes. Before the outbreak my sexual life was healthy, eversince I have had this terrible pain during sex to the point where sex is no longer possible. I am lucky I guess-I only had to go to two doctors before being diagnosed. My current doctors remedies include applying cooking crisco topically, topical steroids, and then surgery. I am still on the crisco option I have only been diagnosed for 2 weeks now but have had the pain for about a year. I am hoping to find an alternative answer, I don't think I can handle the surgery. I am also engaged and have been with him for about three years. It has put some stress on our relationship, but luckily, he tries to understand and is patient with me. Has anybody else heard of this crisco thing? If anybody has comments or wants to chat please e-mail me. thanks.
CommentI AM FROM CLEAR LAKE, IOWA AND HAVE JUST BEEN DIAGNOSED WITH VULVAR VESTIBULITES. THE ONLY RECOMENDATION FROM MY DOCTOR IS EVENTUALLY SURGERY. ARE THER ANY DOCOTRS IN MY AREA WHO CAN HELP WITH SOME OF YOUR SUGGESTIONS?
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CommentI have posted before but I had a few questions I was wondering if any of you could answer. I was wondering if anyone else that has vulvodynia has problems with their nipples? In the past 9 months or so mine have been really irritated. I have asked my doctor. The only thing she could think of is for me to change my bras or soaps. I have done that. They appear normal except for tiny red dots. When my boyfriend touches them or even the water from the shower they hurt and burn. Also, if anyone knows of a decent doctor in the Kansas City area please let me know. I think yeast play a big role in my personal experience with vulvodynia. I'm on Elavil which makes me so tired all of the time. Well, take care ladies and hang in there.
CommentI was finally diagnosed with vulvodynia today. I was so thankful just to know that there was a name for what I had and that someone else had suffered the same thing. I was beginning to think I was alone. My problem started a year and a half ago. I started having severe lower back pain, then started burning and stinging. I had vaginal burning and painful urination. After three urologists and two gynecologists, an IVP, cat scan, ultrasound, bladder hydrastention, urethral dilation, bladder biopsies and antiobiotic after antiobiotic for bladder infections and yeast, I am finally diagnosed. I have vulvodynia. I was beginning to be very hopeful. My doctor started me on Elavil today, but from what I've read it may not cure me. I have sat and cried for the last hour. I am almost 28 years old. I have been married for eight and a half years and my husband and I desperately want to have a child. I also suffer from endometriosis. I want to seek fertility help but see no use since I can't even have intercourse because this debilitating disease. It is so depressing. I pray every day for relief. It is good to hear that I am not alone. I have a very supportive husband, but I have felt that no one understood what I have been suffering through the past months. Thanks for this opportunity to hear from others!
CommentThe website has been very interesting to read. I have not been officially been diagnosed with vulvodynia but seems I have alot of the systems. I have been seeing a GYN for the last year, right after I had a total hysterectomy. I have had vaginal dryness and vulvular redness for about the same time. Drs. have rearrange my hormone treatments, had me on Diflucan, Flagyl, Boric Acid Suppositories and cortisone creams. Next step is to try estrogen patches. Nothing seems to help the rawness. I also tried to change my diet. As far as vaginal dryness I was put on Estratest but after that does not seem to help intercourse, after a short while I burn and I am in pain. Any suggestions, comments ???? thanks
CommentI am looking for a doctor in Atlanta, GA and wonder if anyone out there knows of one. After reading all of these entries, I don't want to go from Dr. to Dr. I am being treated with the Dr. McKay/Emory protocol of Diflucan once a week. I have done the no sugar bit which really helped. I continue to burn. I do not believe I have VV, because I didn't have pain with the Q-tip test. I would love to hear from anyone with any info on Gyns, chiropractors, therapists,etc. in Atlanta. Thanks for the information contained here and please add me to your list. PS I have read that one of the national groups is having a seminar here in June. I can't remember which one. Dr. Willems (?sp) from SanDiego will be here.
CommentI am looking for a doctor in Atlanta, GA and wonder if anyone out there knows of one. After reading all of these entries, I don't want to go from Dr. to Dr. I am being treated with the Dr. McKay/Emory protocol of Diflucan once a week. I have done the no sugar bit which really helped. I continue to burn. I do not believe I have VV, because I didn't have pain with the Q-tip test. I would love to hear from anyone with any info on Gyns, chiropractors, therapists,etc. in Atlanta. Thanks for the information contained here and please add me to your list. PS I have read that one of the national groups is having a seminar here in June. I can't remember which one. Dr. Willems (?sp) from SanDiego will be here.
CommentHello, I am currently searching for a Dr. in the states of WI or MN that have some knowledge or specialize in this disease. If you know of anyone, please e-mail me. I think this site is wonderful. I'm also interested in chatting with others who have this disease so that I can find out more information. Thank you. Shelley
CommentI did get to see a doctor who specializes in vulvar disorders. I have now been diagnosed with early stages of vestibulitis. I also had an ultrasound for endometriosis and I am happy to say that my ultrasound was normal. I am now on a steroid cream and have been told that there is a 85% chance of this working for me. I just hope I fall into this percentage. I just wanted to let everyone know that the doctor did not say that surgery was the only option. If anyone needs to find a doctor in Chicago, I recommend Dr. Sebastian Faro. He seemed very hopeful that I will be cured. I am in much better spirits since my first entry and I also wanted to thank those who responded to my entry. I wish the best of luck to all of us.
CommentSomeone mentioned a seminar in June in the Atlanta area. Do you know what this is about Dr.Glazer?? Where can I find more info on this? Thanks!
CommentI have Vulvodynia and am looking for a doctor in my area who knows about this condition. I am from South Central Kentucky, close to the Tennessee border. Wondering if there is one at Vanderbilt Hospital in Nashville, or maybe at Louisville. Your help is greatly appreciated. Thanks!
CommentI am a Vulvodynia sufferer and also have a lot of lower back pain. I am wondering if this could be related. It seems that I may burn worse when my back hurts. After I have been on my feet a long time my back hurts more and I also burn worse. Could this be connected? Does anyone else have back pain?
CommentWhat a blessing it was to find this website. Thanks, Dr. Glazer. My VVD is the result of 18 months of chronic yeast infections secondary to a contaminated water supply. I was finally able to combat the yeast infections with Colloidal Silver...it worked like a charm, and then we dug a new well and I have had no yeast infections since. I have, however, had the ongoing symptoms of burning without the presence of actual yeast. My doctor has just graduated from med school and she says that VVD is not something that was taught in depth...she happened across an article in her family practice magazine the day after I saw her...so we were able to make a diagnosis right away. She started me on topical premarin cream, 0.625mg each morning, and DesOwen, a steroid cream, each evening. I really haven't had much luck with this, after three weeks. She also tried Diflucan twice a day for seven days, and I actually had pain-free times during that week. If you live in southern Washington or Oregon, I'm told that Oregon Health Sciences University has docs that specialize in the research and treatment of this miserable condition. I'm an RN and have researched this without much luck. I am willing to try anything...I just got married in November. Oh, yea, my doc also started me on birth control pills, OrthoNovum777, to increase the estrogen and help combat some of that "dry" feeling. I sympathize with you all, ladies. I know what it's like to dread having sex, and then suffering for days after. My husband is extremely understanding, but, there comes a point.... Thank you all for your candid input...it really does help to know I am not mental Take care, and good luck Judy K
CommentThe following site lists precise estimates of the oxalate content of some foods: http://www.ixion-biotech.com/oxcont.htm
CommentI am soooooo happy I found this site, great many thanks to DR.Glazer!!!! Reding throuhg older posts in the guest book I realized I am the "oldest". I know I have vulvodynia for about four, maybe even five yeras. It has become a part of my life I got used to it, just do not think I "like" it. One thing which keeps puzzling me is that about two years ago I was tranfserred abroad by my company. I was away from my husband, my diet was probably the same, but I stopped taking birth control pills (figured I'd have a rest from them). After more or less 2 months I was totally pain free, I felt ALIVE again, I started having erotic thoughts... and than my husband come to visit me. He4 stayed for a week, we enjoyed each other, than he left back home, than I come back home, still pain free and within a week of being back home: booom I had all full blown vulvodynia again. My Ddoctor prescribed Novocaine gel, which became the pilar of my marriage. Currently I am on 100 mg of Diflucan every three days as try and see therapy. What was it that caused total ceasing of symptoms?? Any ideas, anyone?
CommentI am 27 years old and have suffered from vulvar vestibulitis for at least the past eight years. Prior to having sexual intercourse, I was even unable to use tampons. After several years and about eight doctors I was diagnosed, but I have still not been able to find any source of relief. I have tried numerous topical ointments and a low-oxalate diet with no success. I have been married for almost six years and have probably had sex with my husband less than 20 times. I have not had sex at all in the past two years and my husband is about to the point of giving up. I don't want to give up my marriage and I would love to hear how some of you have managed to work through these problems. I'm also looking for a good doctor to work with in the San Diego area and also a good marriage counselor to help us deal with these issues.
CommentHi! I'm hoping that some of you can help me with some information. I'm considering having a vulvar vestibulectomy in the Fall. I have a terrific doctor who says that I am an excellent candidate for the surgery since my pain is only during intercourse and is very localized (3-9 o'clock). In the past three years, I've tried many medications, both oral and topical, but with little relief. My doctor has nearly a 100% success rate with this surgery, but I'm still very nervous. If you have had this surgery, could you please e-mail me with you experiences? In addition, my husband and I would like to start trying to get pregnant as soon as possible after the surgery. I'm curious how long it will be before we might be able to have sex again. Any input would be greatly appreciated, especially if your symptoms were similar to mine. Thank you!
Commentfinally . . . after finding this site and diagnosing myself, my doc put me in touch with a specialist that confirmed everything. i'm going to start with physical therapy and will let you know how that is going. i just wanted to pass this on -i suffer with constant external burning and have found that refrigerated 99% aloe gel (from a health food store) is such a RELIEF. i use it 3-4x/day, especially at bedtime, and have found temporary relief from something that was tormenting me to death. the doc said vulvodynia is a very rare disorder and i did the math - 2/10ths of 1 percent of american women suffer - a VERY SMALL percentage. this is one reason why we go from doc to doc with no answers. i am on a personal crusade spreading the word (by FAX, phone, email) to san francisco bay area docs. hopefully other women will not end up on the nightmarish merry-go-round that is vulvodynia and its related disorders. keep the faith ladies! we will prevail!
CommentHello all. I just found this website and was thrilled to discover this resource. I would also like to share my story. Is there anyone in the Anchorage, Alaska area that is suffering from vulvadynia and/or knows of a doctor I can see here????? I just moved here and am having a bad flare up. Unfortunately this flare up has coincided with a long awaited miracle - I am finally pregnant after years of battling infertility!!! Although I was quite joyful with the news I am devasted that my symptons have increased!!! Along with continual vaginal burning, I also have burning in the pelvic/stomach area. Does anyone have this symtpon??? I feel as though my insides are on fire!!!!!! I have noticed that my symptons flare up during mid cycle and just prior to my period. In the past, once I started my period, I felt better. Well, I just found out about the pregnancy last week. I feel very premenstrual and am suffering incredibly at the moment. I am feeling so sad!!! I had gotten pregnant in 97 and actually felt better for the short time i was pregnant (sadly, I had an early miscarriage). It was always my hope that when I got pregnant again, this horrible pain would go away!!!!!! I have struggled so long to get pregnant and I decided about a year and a half ago to "live with" the vulvadynia and focus on the infertility. I did not want to be taken medications while I was trying to get pregnant. I had tried the anti-depressants, but had no luck. I also tried acupuncure, but found no relief. Again, I was focused on getting pregnant and thought this would resolve the vulvadynia!!! Now, I am horrified to find that it has made it worse and I never even thought about the possiblity of a vaginal delivery causing more problems- now i am!! Someone mentioned the shooting pains down the thighs, I have experience that as well. The MOST painful thing for me to do is SIT!!! Does anyone else feel this way??? It seems that pressure on this area causes the burning to intensify. I actually do not experience a huge increase in pain during intercourse, and actually find it sometimes helps to divert the pain away (although I am usually sore afterwards) . The majority of sufferers seem to have extremely painful intercourse----is there anyone out there who does not have this as a main sympton? And again, is there anyone out there that has experienced the pelvic/stomache area burning?? Please, if anyone can offer some advice or support. Please e-mail me. I am hysterically crying while I type this!! I need help.
CommentHi! I wrote yesterday looking for input from anyone who has had the vestibulectomy surgery (especially if you were considered an excellent candidate), however, I didn't give my complete e-mail address. Here it is above. Thank you again to anyone who can provide me with some helpful information.
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CommentI am also suffering from this horrible condition. I've had this problem since last year. Symptoms have decreased over time. I just wanted to let everyone know that I recently meet with a nurse practioner in Auburn, MA. I had my routine pap smear. She also took a ph level which was very high and abnormal. She said that could be the cause of my burning. My treatment was to add acidity in that area with a suppository once a week for approx. 8 mths. Has anyone had there ph level tested. She claims most of the patients she sees with vulvadynia have very high alkaline (ph levels) which means the body cannot fight off infections. Please e-mail if this type of treatment has helped you.
CommentI am looking for a doctor who is knowledgable about vulvadynia in Delaware? Can anyone help?
CommentDoes anybody no of a doctor in Perth Australia who treats vulva pain
CommentSound familiar??...itching around vagina...small tears... whitish discharge...worsens around ovulation... irritation of skin around rectum... Sex is either terrible pain during (like skin rubbed raw) or burning afterwards. I don't even bother seeing doctor--especially after some of the horror stories I've read. To be dismissed by a non-understanding, unsympathetic doctor after I draw up the courage to go would be more than I could stand. My husband doesn't even know the depth of this misery. I soak in a hot tub of water because it is comforting..but maybe that is causing more problems. It seems that everyone has different things that work for them. When I am not "suffering" I am in heaven. I have been having bouts of vaginal irritation for years. At first I thought yeast infection but I know it isn't that.. After sex, there are small cuts or tears in the skin. I go from gold-bond powder dry it up to the a&d ointment keep it moist. My husband is a saint to put up with me. It seems that I might as well keep trying to doctor myself, because I refuse to let the medical establishment humiliate me as it has others. If this is in my head, why is my vagina so sore??? I'm new to this website, and haven't read too many entries but would appreciate any words of advise anyone has--as long as it involves self-help measures that I can use. Seeing a doctor at this point is not an option. Some say low oxalate diet, but then others are allergic to the food in a low oxalate diet. How does a person know where to start? The one thing I know for certain is that ovulation plays some part in my symptoms. Help me help myself!!!
CommentHello there. This problem doesn't exist for me thanklfully but for my younger sister. She's been with this terrible condition for the past 3 years. B4 this I've never heard of vulvodynia. She has recently moved to Anchorage Alaska and is seeking a doctor. She had recently had a miscarraige and presently is pregant. She said she's so uncomfortable now and me being in NJ I can't offer any help. She's so worried about being pregnant and not feeling well, I wish I could offer her some comfort. I can't even imagine what she is feeling.....sounds so terrible. Especially after reading all those letters. There has to be help out there. If anyone know of anyone or place in Alaska please email me@tweetypp@aol.com. God Bless All You Women out there with this terrible condition. Thank You
CommentI have contributed to the guest book before. I have been to University of Michigan and am presently on Elavil. I have been feeling better, but not pain free. They don't promise that, just that it might be helpful. I take 50mg. per day. Has anyone out there been on this long term? It has been about 9 weeks and I think that I have peaked. I like the rest of you pray daily for a cure from this nightmare. Why this happens I don't know, but I do know that we can't give up. I was so depressed that I considered some awful things. I know now that I have to hang on for the people that love and need me. I hope for all of our sakes that a cure is found. If anyone wants to talk or needs a friend that understands please get in touch as I know how you feel. Terry
CommentI was diagnosed 2 years ago with vulvadynia after being biopsied and frustrated by many doctors telling me that it was all in my head. Now that I know what the problem is, I am trying to deal with it. I have already tried a topical steroid (with absolutely no results), chickened out of the steroid injections options and I am scheduled to have surgery on June 10, 1999. CAN ANYONE GIVE MY ANY INFORMATION, POSITIVE OR NEGATIVE ON THE SURGERY. It is the same one that was described on the show Human Body 2000 - a partial vulvectomy. I also have burning and itching which seem to originate deep inside the vaginal walls. I too broke my tailbone and had a pilonidal cyst removed in the area in 1992. Any info. at all would make all the difference in the world to me. Thanks! Lissa
CommentHello everyone. I was re-reading some of the letters the other day and I had a question for Kiernan who posted in guestbook #6. I tried to e-mail you but your address must have changed because my letter came back. If you read this I was wondering about the test you were having to test for ureaplasma (which may be secreted from the bartholin gland). I had never heard of this and my doctor never mentioned it. Could you tell me how they test for it? How did your test turn out (if you don't mind sharing) and if it was positive what treatment is available? I hope you have found some relief. I have another appointment this afternoon with may gyn. I can't keep this up much longer so I hope I'm able to find something to make me feel "normal" soon. It is hard not knowing what to expect from one day to the next. Some days are bearable and some days just getting up is hard to do. If anyone reads this please send some positive thought my way. I'm so tired of running to the doctors. I just want my life back. Thanks for listening again. ~Terry
CommentTo Terry who went to the University of Michigan; I tried to send you an e-mail but it came back. I just wanted to say that I'm glad you didn't act out on your depression and I hope the Elavil brings you great relief. I've never tried it. Write back if you want to "talk." Sue
CommentHello, I am looking for Gyn Leslie Sedownick could you please help me get a hold of her? Also this web site has helped me a great deal. Dr Glazer was very helpfull and prompt to give me the info i needed. Thankyou. Luv Corrine
CommentCould anyone tell me of a doctor that knows about vulvodynia and how to treat it in the New Mexico area?
CommentI have be seeing my gyn for problems symptomatic of a yeast/urinary track infections for over a year now. The symptoms cleared up, but recently returned. I keep getting diagnosed with either yeast, urinary track, or bacterial infections. Each time my test results come back positive with slight traces of one of these infections. I take medicine, but the symptoms are still here. My gyn did mention that I may have vulvodynia, but hasn't suggested much in the way of treatment options. Lately I have had a lot of what feels like bladder pressure, slight burning, and a feeling of what I can best describe as a feeling of being stimulated. I have also noticed that my skin condition has changed, I now have breakouts and my allergies have worsened. CAN ANYONE OFFER HELP OR ADVICE? I cant take this any more, this constant discomfort. I have a husband of six years now and lately we haven't had much of a sex . It's not that sex has been painful, Its just that with these uncomfortable feelings its hard for me to get in the mood for sex. He has been very patient, but I know he misses our closeness. Also, does anyone have information of a specialist in the area of Delaware.
CommentHas anyone tried a new anti-depressant called Celexa (Citalopram)? My doctor just took me off amitriptyline (elavil) because I hated the side effects, but I was only on 25 mg/day, so I may not have given it a chance. Any comments on either drug, as well as neurontin would be appreciated. Thanks!
CommentI am writing this to Renee, who posted a comment a few days ago. I do not have an e-mail address so I will just talk to you here. You said you were scheduled for surgery soon and are worried about the procedure and it's outcome. I have had a less invasive surgery done a couple of years ago that I haven't seen mentioned by anyone else in the guestbook. It's called "vulvar fulgeration". My doctor is in Galveston, TX and is a member of a board of worldwide doctors looking for treatments and a cure for vulvadynia. Anyway, for the procedure you will be knocked out so you won't feel any of it. It involves using an electric needle to give the "trigger points" of the pain a third-degree burn, which in turn kills the nerves that are causing the pain. I know it doesn't sound pleasant, but to me it doesn't sound as painful as having the vulvectomy done to remove the whole affected area. I am currently taking 75 mg ot Elavil a day, but the "fulgeration" got rid of about 85% of the pain. The doctor said I had about 12 of the trigger points and now I only have about 3-4 of them. The recovery time is pretty short so you are only feeling pain afterwards for about a week which is much shorter than the other surgery. It takes about 2 months before you will know if it has worked or not. I had the surgery done two times and it has helped me tremendously. Well, I just thought I would give you and anyone else who was interested an alternate treatment that could be tried prior to the other major surgery. If anyone is interested in this surgery just write in the guestbook to let me know and I will give you my doctor's name and phone number.
CommentInterested in corresponding with another sufferer of vulvodynia and vulvar vestibulitis due to pudendal neuropathy or pudendal neuralgia. Have suffered for 4 years-tried everything,creams, medications, nerve blocks, trigger point injections, e stim etc. etc. No idea what caused it. Suddenly had the horrible burning feeling like there was a flame thrower inside me. Has anyone ever had the sacral stimulator implant and if so was it successful? Also curious as to whether biofeedback would help for pudendal neuropathy. Been in physical therapy for 3 years for piriformis syndrome, levator spasm, low back pain, irritable bladder etc. So far physical therapy seems to help the most. Burning pain is constant and unrelenting, sitting, standing, walking, any physical contact are dreadful. Will not give in to this pain, will continue to search for cure to regain my life again. My heart goes out to all fellow sufferers. Thank you for this website it helps us to know there are others who know what it is like.
CommentHello again. I just wanted to thank Kiernan for getting back to me and to Sue for her words of encouragement before my doctors app. the other day. He had another look and didn't think the skin looked quite right so he did 2 biopsies. The results should be back in about two weeks so I'm keeping my fingers crossed that something specific will show up and that it can be treated. I'm trying not to get too optimistic but at least it gives me a little hope for the next few weeks. If I get any good news I'll let you all know. ~Terry
CommentI am still making the rounds with doctors trying to determine my problem. I have seen orthopedist for "inflammation around the tail bone" and proctologist for hemmrhoids, and had a complete physical with my internists. Next step is OB-GYN. But I truly think this may be my problem. If anyone knows an OB-GYN in the Atlanta area that could treat this, please let me know. Thanks. And you will all be in my prayers.
CommentI have been married for 18 years and have always had painful intercourse. This site has so much information. I was first able to put a name to this condition by watching Body Human 2000 in which a woman described exactly the feeling I had during intercourse. Putting a name to this has dramatically helped in my own reseach ability and I think gives some credibility to it being a real condition instead of just a girl thing.
CommentI have signed in before but have new information that I wanted to share. After much research I have found a huge connection between yeast and Vulvodynia. I visited a iridologist today, this is someone who reads your eyes and treats you homeopathically. This is after seeing 6 doctors over a course of one and a half years, and having multiple tests done that has led nowhere. Anyway, this iridologist told me that my eyes were very hazy and white, this meant that I have a lot of yeast. I already knew there was a connection and she didn't even know I had Vulvodynia. When I told her that I had been diagnosed with Vulvodynia she said that yeast was the cause of my problem. She suggested that I buy and read "The Yeast Connection", the author's last name is Crooke. I bought it today and have skimmed through it and already have been amazed at the symptoms yeast can cause. It gets into your body and causes many problems. I suffer from almost all of them, symptoms that I would have never thought to be related. This book also lists Vulvodynia as a result of yeast. She also is having me begin a yeast cleansing. I am to begin taking the herbs Enzydophilus and Candida Formula. She said this will cleanse my body of the yeast. I only have to take them for 2 months. I will be adding other things as I go along. I also have to go on a yeast cleansing diet. I am very hopeful that this will work. I thought it was very interesting and some of you may want to give it a try. It can't hurt and I am desperate. I will post my results in a couple of months. E-mail me if you have any questions and get the book. It only costs $14.95. It has a lot of helpful information.
CommentI am so thankful for finding this site. My husband and I have not been able to have intercourse without my being in agony for over a year now and I had been to 2 different doctors who had no idea what was wrong. I really had begun to think it was all in my head until coming here and through this site I found a doctor near me and will be going to see him in three months. A long time away but I feel hope for the first time in so long. My husband and I have been married for almost 11 years and have 4 kids. He was so kind to have a vasectomy so we didn't have to worry and now this but just maybe it will now get better. Thanks for being here!!
CommentI have been trying to get into the chat room now for over 20 minutes and I am just going around and around. Could someone please email me back again and help me please. I suffer from Vulvodynia and would really like to chat with someone. Thank you Kelly Corry
CommentHello, I have had vulvodynia for about 3 years. I'm sure it will come as some relief to other suffers to know that my illness is much under control. I wanted to share with you some of the things i've done over the past that may have helped me. I do not consume items that have a high oxylate content, except on occasion. I have been eating a pretty healty diet which includes "Power Bars". No, I'm not telling you that Power Bars cured me, but I feel like something they contain my have helped. Go figure. :-)I cut out my morning Orange Jucie, and replaced Regular Cola with Diet. I also wash my clothing, including pantyhose with Cheer and run throug the rinse twice. Wash you clothing and bath towel after each use!I do not use fabric softner. I DO NOT USE pads with dry weave. These things will give me a flare within hours. Tampex tampons and Kotek pads seem to work wonderfully. I had a period of nearly a year where I was almost 100% pain/symptom free. I developed spiritually durning my dealing with the disease which lead to relief of ongoing Gastrointestinal problems. I found that prepared Aloe Vera Gel(it is specially made for drinking) works wonders for developing ulcers! I am a new woman, since i've had this illness. Sure, I wish i never had it but on the bright side....it made me work on getting strees out of my life. When people meet me they would never guess that I'm only 24. I have been able to work full time for nearly a year, without taking any sick days related to Vulvodynia. I've even told a few friends that i suffer from the disease. Sex becomes a BIG deal when your dealing with VV! I didn't think about how much people pry into your sex life and base the quanity of sex on the quality of the relationship. There are plenty of good relationships out there, having sex every night doesn't mean the relationship is great! There are people out there who are looking for a SOUL MATE and not a bed buddy. If you make a spiritual connection with another soul, you've made the greatest connection that can be made. Good Luck to you all! God Bless, MS
CommentThis is in response to Wondering's comments of 4/12/99. I have had vulvodynia for almost 3 years. I want to warn all women to be careful using vibrators. You can cause permanent damage and vulvodynia this way. I never had any genital pain until I inadvertently damaged the clitoral nerve while using a vibrator. (At least that is what I think happened.) I'd used a vibrator all my life, but had been using a it more in the several months preceding (about 3X a month, not just 1X a month). Why? I just felt sexier...my husband and I had some of our best sex in the few months before I hurt myself. My clitoris felt irritated the last few times I used a vibrator, but I didn't think much about it as I was still able to achieve orgasm despite the irritation. That was my first mistake. Then the very last time I used a vibrator, I got careless, pressed too hard on the clitoris and felt a horrible, sharp pain. I believe this was when I damaged (not just irritated) the main nerve in the clitoris by trapping it against the pubic bone. The ensuing months were a nightmare: tingling, then gradually worsening itching followed by copious secretions from the glands in the clitoral area; hypersensitivity to touch which still persists; then several months of an undiagnosed yeast infection which caused the clitoral hood/clitoris to swell 2-3X normal size; then a round of steroid cream which my old gyn prescribed. The cream almost finished me off, it was so painful. That's when I developed shooting pains up into the womb and pains going down the insides of my thighs. Then I was put on 150 mg. of the antidepressant Elmiron. This caused major acid problems in my stomach and I had to abandon that avenue (I am now on an acid blocker and have stomach problems as a result). In the past year, I have had to give up vigorous exercise but somehow manage 2X/week on a stair machine, if I am careful to keep my legs apart on the pedals. I can't wear underwear, hose, anything restrictive. Ordinary sitting and walking is difficult. My new gyn thinks I may have interstitial cystitis and is treating me for it: recent symptoms in the last 4 months include twinges and needle stabs on the front of my abdomen. (I doubt I have cystitis but will not allow a cystoscopy for fear of triggering a relapse.) I have also developed vaginismus because of all the pain. Most frightening for me at present is I have had sensations of burning around the rectum this past week. I am devastated and terrified by this new development. I am seeing a therapist in hopes I can learn how to cope with this condition. The remorse and guilt I feel for having caused this problem are enormous. I am also looking into biofeedback/meditation. (My therapist, who knows my whole story including the use of the vibrator, thinks stress is contributing to my relapses and new symptoms.) I have not told my gyn about use of the vibrator partly because of the embarassment and partly because I don't see how any doctor can fix a damaged nerve. At the suggestion of my gyn, I may explore an epidural with an injected steroid in hopes it may break the cycle of pain. Does anyone know anything about this? I think at this point, my only hope is to reprioritize my life and reduce stress, get enough sleep, exercise carefully, and look into the mind/body connection to reduce the vaginismus if nothing else. I still can't believe this has happened to me and how drastically it's changed my entire life. I have to learn to accept the fact that I will never be normal and must somehow learn to manage (not be managed by) my vulvodynia. I thank god that my husband loves me and only wants me to be pain free (sex is a thing of the past). I only pray that I will stabilize and that the burning will subside and not spread. Bless all of you women out there with this condition, regardless of its cause. May you find the strength to find some quality of life and respite from the pain.
CommentThis is an addendum to the comments I just posted. I erred when I mentioned the antidepressant Elmiron. I meant ELAVIL. If you are considering using Elavil or any tricyclic antidepressant to control vulvodynia pain, monitor yourself for adverse reactions. I was only on Elavil 3 months last spring but my stomach has never been the same since. Before Elavil, I had no stomach problems whatsoever. The gynecologist who put me on Elavil told me the drug was not the cause of my stomach problems, so I stayed on Elavil when I should have stopped it. If you experience any feeling of fullness between the rib cage or burning in the stomach or esophagus, see a gastroenterologist. Like me, you may be unable to tolerate this class of drugs.
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CommentMabe one way we can get the word out is by writing NBC to do a show on Vulvodynia. Please write. Story Suggestions Dateline NBC Room 510 30 Rockefeller Plaza New York, New York 10112
CommentHello! I was diagnosed with vulvodynia two and half years ago. As all of you can relate, life just hasn't been the same, always constantly in pain. I've tried many, many forms of treatment and the only thing that worked to dull the pain was the herb, Hawaiian Noni Fruit. Recently, I moved to Seattle from Indiana and came across a doctor who specializes in vulvodynia and has cured all but one of her patients. She's in the process of treating me and says I'll be pain free within three months. I can't express my emotions...anger for the doctors in Indiana who didn't care enough to help and absolute adoration for the doctor who is now helping to cure me. If you're interested in contacting this doctor, please email me and I'll give you the information. And just so you know, she's a dermatologist! What she says about vulvodynia makes perfect sense. Hoping to solve this painful mystery - Jennifer
CommentHello! I was diagnosed with vulvodynia two and half years ago. As all of you can relate, life just hasn't been the same, always constantly in pain. I've tried many, many forms of treatment and the only thing that worked to dull the pain was the herb, Hawaiian Noni Fruit. Recently, I moved to Seattle from Indiana and came across a doctor who specializes in vulvodynia and has cured all but one of her patients. She's in the process of treating me and says I'll be pain free within three months. I can't express my emotions...anger for the doctors in Indiana who didn't care enough to help and absolute adoration for the doctor who is now helping to cure me. If you're interested in contacting this doctor, please email me and I'll give you the information. And just so you know, she's a dermatologist! What she says about vulvodynia makes perfect sense. Hoping to solve this painful mystery - Jennifer
CommentMESSAGE FROM A PAST VULVODYNIA SUFFERER - STOP TAKING ANTIBOTICS. I don't know where to start, but my heart bleeds for all |
