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CommentWelcome to the 27th vulvodynia guestbook and I hope you find the information contained in this and previous guestbooks helpful. Howard Glazer Ph.D. owner vulvodynia.com website
CommentI have nerve damage from a bikini wax I received in Aug. 2006. The pain stopped after 2 1.2 months and was retraumitzed in Jan. I am taking 2400mg/day of neurontin and I still have severe pain. Does anyone take cymbalta in conjunction with neurontin with good results? I have 30mg and 60mg samples. I heard you either love it or hate it. I am concerned about hair loss. I also take wellbutrin sr. Thanks.
CommentI still itch like no tomorrow :'(.......seems like there are only short reprieves from it, but the "itch outbreaks" are several times a day and night... tough to deal with...
CommentHello everyone, I am Jan, 51 yrs old. I have gone back and forth to this site for many years. I was diagnosed with VV at UNC-Chapel Hill many years ago. I was told I didn't need to go back because there wasn't a cure for VV. However I went to a Nurse Practioner in our town. I told her what I had been diagnosed with and I took her a magazine article and things I had found out from this site and also things from the internet. She took the information home I had taken her because she hadn't heard of VV. Almost a week later she phoned and wanted to see me. She had a pharmacist here in town compound me Boric Acid suppositories to be inserted 1 every 3rd day. I took Citracal calcium tablets to rid the body of uric acid. I was also put on Amitriptyline. She helped me a lot. My point is this. Out of all that I have read anywhere. Not one other person has figured out what I have. I have discovered that my VV is triggered by what I wear. I cannot wear any slacks, skirts, shorts or pajamas that have polyester, linen, spandex or rayon in them. I purchased 2 pair of denim capris to finish up the spring in at school. I work in Kindergarten. I washed them and wore a pair to school. By 10:00 am I was in terrible pain with the burning, and itching by 2:20. I couldn't wait to get home to get them off. I went to a retirement dinner and wore a pair of shorts that had spandex in them. The same thing, again burning & itching. I wore a skirt to church that had polyester, rayon and spandex, same thing happened. I have learn to look for cotton clothes. I have always worn cotton underwear, so this has nothing to do with it. As strange as this seems I even tried wearing a large thick pad with the clothes and I get the same results. Please if you have had a similar experience please email me and let me know. It beats me. Thanks, Jan
CommentHI everyone. I have been battling vulvodynia for almost 2 years now. For the last month I have had very bad burning in my rectum/vagina area, really bad burning. I looked at the area last night and I have a red rash from the inside of my anus and it goes all the way up to my inner and upper thigh. I have no clue on what this is. I have an autoimmune disease but the rheumatologist isn't sure what kind and I don't go back for 2 more months. This is really scaring me. For the last few days, I have had extreme fatigue.. Has anyone else had this before?
CommentAllison, The reason you have symtpoms in your rectum area is because vulvodynia is a pelvic floor problem. Your pelvic floor stretches from your vagina back to above the end of your rectal area. Because your pelvic floor muscles are so tight, they are going to have an effect both on your vagina and in your rectum. If you want help finding a pelvic floor specialist in your area, let me know, and I'd also be happy to talk to you.
CommentHi everyone. I hope you are having a better day then me. I have been dealing with this VV way too long. I am starting to get a red rash on my rectum and now it is covering my vagina. It burns when I have a bowel movement. Today when I had a bowel movement, I had a small amount of blood in the toilet and on the toilet paper. It feels like fire when I sit down. The pain is now on my sides by my kidneys and my lower back and extends all the way down my leg. I have had ultrasounds,vaginal biopsy,CTs and blood work and the only thing that ever did show up was a 5 cm ovarian cyst but it went away in 2 months. I'm not sure if it's back or not but I don't have insurance to find out. I'm so tired of hurting. We went on a family get away this weekend and I couldn't even enjoy myself. I'm so worried about the blood and the pain from my rectum,vagina. I always thought 37 years old was too young to have all of these things but I guess I was wrong. I was refered to a gastrologiest a few months agop when I was having rectum pain before but the Dr wouldn't see me because he said it wasn't enough to warrrant a visit. Anyone else had this before? Allison
CommentMy vaginal problems began in 2002 when I was just turning 21. I was bitten by a cat, which in turn forced me to take a heavy dose of antibiotics. I believe this set off some kind of yeast infection, although when I went to the gynecologist, she told me everything was normal. I started having burning, raw pain, like a yeast infection, but there was no discharge. I went to doctor after doctor, tried sugar-free, yeast-friendly diets, changed all of my personal products, etc. Nothing helped. Finally, after two essentially sex-less years of burning pain, a doctor diagnosed me with having vulvodynia. Amazingly enough, she wrote it in my chart, but didn't tell me! Maybe she was having a bad day; we'll give her the benefit of the doubt. I finally figured it out on my own after googling everything I could imagine. I went back, and she started me on 50 mg of Elavil a day. The side effects were awful at first, but I eventually adjusted/got used to them. After maybe five months, my vaginal pain stopped completely. I had about two and a half years of no pain whatsoever. Then, at the beginning of 2006, I started having a myriad of other problems - muscle and joint pain, fatigue, etc. After another battery of tests (lasting about a year, theories ranging from rheumatoid arthritis to cancer), I was finally diagnosed with fibromyalgia. I suppose I'm just doomed to suffer through largely misunderstood, "made up" diseases with no cure! I changed my diet around with the fibromyalgia in mind, eating lots of fiber - nuts, bran flakes, all kinds of berries, etc (I'm a vegetarian). Truthfully, I didn't even think about vulvodynia much anymore because I had had such a long remission. However, about three weeks into this regimen, it came back with a vengeance. I can't even tell you the horror and depression I felt when I woke up one day with that old, familiar feeling. I'm still taking the Elavil, but I think my abrupt dietary change lends some credibility to the diet/low-oxalate theory - at least in some cases. I started taking calcium citrate, acidopholous, and cranberry pills immediately. I feel slightly better already after a week, but I am making an appointment with a local naturopath - I specifically asked if she had experience treating either or both of my conditions, and she does. Apparently, vulvodynia is something she comes across quite frequently in her practice. The fact that the information is out there is extremely encouraging, because when I first started having problems, no one could tell me what it was (and we're talking Planned Parenthood to private practice doctors to rheumatologists, etc etc). I think knowing is at least half the battle. Nothing is worse than chronic pain with no explanation and no end in sight! I'd take my fibromyalgia over vulvodynia any day - at least you can have sex and vent when you feel like crap. Also, if you need a day off work, you can cite fibromyalgia, but you're not going to tell your boss that your "burning vag is keeping you from productivity." But, I got my symptoms to disappear for over two years, and I have to believe I can do it again.
CommentTo All Pain Sufferers: I am here to tell you that you do not cure or control your vulvadynia and such illnesses with drugs and surgery....if anyone tells you this is the treatment plan...run,,,then run faster out the door...1) Take Charge of your pain and suffering 2) Do alot of research and find a doctor who specializes in this problem, 3) Then educate yourself with a consultation to learn about your options 4) Quit allowing the doctors to make all your decisions for you - you are the boss of your illness and pain not the doctors,,,, remember that....I suffered for over 20 years to the point it got so bad I could not work..I take all the credit for diagnosing, finding the right doctor and the right treatment plan,,, but I can guarantee you that there was no surgery nor was there any drugs. just a few months of special physical therapy I call it and practicing those keigel exercises and changing my diet was my cure and I am now back to being the energized bunny again..anyone wanting further info about a naturopathic route to control your vulvodynia...I am available for further discussion. I feels darn good to be me again ! And so can you so what are you waiting for...email me :) I am in the Central Florida area
CommentAm sending a huge bouquet of flowers to Dr. Glazer personally for taking the time to respond promptly to my desperate email 2 years ago...because of his prompt response and educational email his key word regarding inflammation was the key to unlocking the mystery towards a true diagnosis....of vulvodynia. If you are in the central fla area have I got an advanced gynecologist for you!! No surgeries or drugs...so THANK YOU DR. GLAZER for your support!!!!
CommentCherie, although I agree with you that everyone should explore multiple treatment options, including naturopathic (which I tried myself), sometimes surgery is the best solution for those whose VV is caused by virus-induced nerve damage. I have talked to multiple women who were considering surgery and ended up doing it because it was so successful for me and others.
CommentI have been suffering vulva pain for almost five months. The doctors did not know what was causing the pain and said it may be vulvodynia. One day I came across a web site about pudendal neurapathy. The symptoms were what I was suffering and it is often misdiagnosed for vulvodynia. The good news is it is curable. I went to a neurologist and it was confirmed that an irritated pudendal nerve was the cause of my pain. The symptoms I had were a hard pinching stabbing pain in the right side of the vulva that worsened throughout the day as I sat. Sitting became painful. Sometime in the fourth month I had a fluttery muscle spasm feeling. The neurologist told me to buy a foam donut cushion to sit on when ever I had to sit down. No excercise, swimming ok if it caused no pain. I am to use this cushion for one month and he said I will find complete relief. He prescribed gabapentin for pain. The medicine works well. A good website for info is: http://www.urmc.rochester.edu/smd/Rad/Pudendal.pdf http://www.pudendal.info/ My doctor does not recommend steroid shots as this may cause permanent damage if done incorrectly. He has had success in the above treatment. Another lady suffering the same pain was using gabapentin and said it took a lot of the pain away. They say pudendal neurapathy is rare. I believe if more doctors were aware of this nerve and the symptoms, more vulvodynia sufferers would be pain free. I am only a week into my treatment but already feel better. If this helps only one of you, all the suffering would be for a good cause. Hope I helped. Kelly
CommentI live in Central Florida....anyone needing a great advanced gynecologist for Vulvodynia feel free to contact me. Anyone who has found a great gynecologist to treat their vulvodynia..I want to hear from you...lets help others get on the right track...so Kick It In Gear With Cher! :) Here's to Happy Healing!
CommentI live in Central Florida....anyone needing a great advanced gynecologist for Vulvodynia feel free to contact me. Anyone who has found a great gynecologist to treat their vulvodynia..I want to hear from you...lets help others get on the right track...so Kick It In Gear With Cher! :) Here's to Happy Healing!
CommentI've suffered with vulvodynia. My recipe for successful recovery is stop all amino acids, that includes vitamins (B) and turkey with triptophen. Also estrogen replacement with a balance of natural progesterine. Eat healthy, get back in balance with excercise. I felt a huge difference in just a few days. Then when your body is back in balance reintroduce your vitamins. It worked for me, I hope it works for you too!
CommentSorry, just to clarify, I did take estrogen (estrodial) and I did balance it with natural progesterine. Take care.
CommentJust to clarify, I did take estrogen (estrodial) and balance it with natural progesterine. Take care
Commentjust a quick thank you for the website, it has so much useful information, and made me more confident about dealing with my pain when starting a new relationship! please keep up this great work! thank you again, Loretta
CommentHey anyone. I am in some serious need of a doctor who can treat vulvodynia or vulvar problems in Utah. I can't find one online. This is such a miserable problem. If anyone knows please feel free to email me. Thanks you so much.
CommentTo All: I just wanted to suggest the addition of Vitamin D to any supplement regimin. You may also request to have your general MD do a blood test to determine if you are deficient in Vitamin D. Don't self medicate and overdo it, Vitamin D can be toxic. My mother who is elderly was prescribed a very large dose of the Vitamin and I have done some reading on the Internet and it has been underrated. Seems that Vitamin D supplementation may help resolve many health issues and who know, it may offer some overall help with some Vulvodynia symptoms. Best of luck to All.
CommentIf you are having symptoms of vulvadynia please have yr gyn check your pelvic floor. I am going to pelvic floor pysio therapy after a bad UTI and getting better.
CommentI have pelvic floor dysfunction really bad along with the vulvodynia and my doctor won't even refer me for physical therapy. I also have PNE which is a nerve entrapment and it hurts like*-____* to walk or sit down. I'm looking online to see if there are any exercises I could try from the internet. I'm giving up on the medical part of it. They know about as much as I do. Has anyone ever heard of L-lysine and R-lipoic before?
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CommentI have developed symptoms after a one time use of KY warming jelly. Could this be the cause?
CommentTeresa Ei, Personally, I don't think that's the reason you have symptoms. The fact that you have to use KY jelly is a clue. You probably lack the natural mucus membrane that estrogen provides. Keep applying a barrier (vitamin E, or vaseline work well) until you get your hormone levels back into balance. Good Luck
CommentI have been seeing a physical therapist who does specialized myofacial release and trigger point therapy work and after 2 months, I am almost completely pain free. She is a specialist in vulvodynia and my other vulvodynia friends call her the vagina genius. Everyone who has vulvodynia needs to be evaluated by a specialist in this area.
CommentI'm curious, how many of you have suffered from the following problems? arthritis fibromyalga (spelling?) gallbladder diease Ok, this question is a a little strange. How many of you have a constant problem (conflict) with women in your life (Mom, sisters, friends)? Answers would be much appreciated. Thank you.
CommentGreetings all, What a liberating relief to find this website! I'm 52 and I've had this for the last 10 yrs, although it's really bad now. Didn't even know it had a name, finally found a physicians asst who gave me the word vulvodynia. What a relief to not be told yet again that there was nothing I could do, or that I should take premarin. Premarin burns! Sharon, can you talk more about that myofacial therapy you had? Also, can anyone recommend a website where I could learn pelvic floor exercises? Thanks!
CommentI have written on this wall a few times and i havent had any responses. i am up at 4 in the morning crying at my computer because i feel so helpless. im only 20 years old and for 2 years have had a problem that doctors cant figure out. i have no other prior health problems. my symptoms are yellow watery discharge that occasionally itches and has a strong odor like dirty feet. ive been on a million different anti biotics and yeast things with no releif. i had some relief with augmentin which is supposed to help with an overgrowth of lactobacilli. but it diddnt help completely. i am doing baking soda sitz baths which really arent working that well. i dont know what to do. i though i might have cytolytic vaginosis but if the baking soda sitz baths arent working i dont know what to do. i am at my wits end and its ruining my life. i cant even go to school without thinking about it. and i have no more money to spend at the doctors. what do i do???? :( i have never felt so alone and helpless.
CommentTo Tired Of Suffering: I am so sorry you are going through this difficult time. You are just about the same age as my older daughter and it is very upsetting to know you are not getting a break from this illness. I have a few comments and suggestions for you to consider. Vulvodynia is a general term to describe a host of symptoms, all of which have unknown origin. You cannot pinpoint the trigger that started your suffering, but from all the past guestbooks we can understand the damage antibiotics can have on the balance of healthy bacteria within the vulva and vagina. I have also read repeatedly that the vagina is self cleaning through discharge, so allow it to do so uninterrupted by medicines, cremes, douches and bathes. Stop all medicines and treatments for a couple of weeks and give your body a chance to heal itself. If you have been using the same doctors for the past two years, stop going to them and find new doctors to examine and diagnose you. You have to break the patterns you have fallen into because it's possible different doctors will ask diffferent questions and do different tests. Don't give up hope and continue to post here for support and to share your story. Best of luck and stay strong.
CommentOne last thought to add to the above post. Have you been tested for Endometriosis? It is a very common and often missed gynecological condition. Take care.
CommentTo tired of suffering - have you been tested for trichomoniasis? Considering the discharge color and smell it sounds very much like that. I don't know much more about it except that it is also treated with antibiotics. You might need to google it. I don't understand why they just can't take a swab to test absolutely everything under the sun but also tell us if our own microflora is out of balance.
CommentThank you for the feedback. I have actually been tested for pretty much everything under the sun (STDs, trich, bacteria, strep a and b, and yeast, i was even thought to have desquamative inflammatory vaginosis but was treated for that with no relief). and been on several antibiotics. the only one that gave me relief was Augmentin which is to treat too much lactobacilli. When they do a wet smear the doctor either comes back and says...i see nothing... or they see a lot of lactobacilli (which already exists in the vagina and thats why some docs say they dont see anything) that and a lot of white blood cells, but thats it. at my very last appointment the doctor said to keep taking a dicflucan adn that i must have a chronic yeast infection...even though they couldnt find any.... i tried taking it for two weeks and it made me more irritated and didnt change the consistancing of my disharge. she said,,.... i dont see anything wrong, you have more than enough lactobacilli..... so i gues that just stuck in my mind. sometimes baking soda sitz help my symtpoms but not completely, i dont know if overtime my symptoms would get better but ive been doing it for 3 weeks. this all started two years ago after i had a LEEP procedure done, which i didnt even need cause the peice of cervix they took out turned out normal. but ever since then ive had discharge that is like water, with an odor of cheese or dirty feel, the pH is more acidic, and internal and external itching around the opening and around the skenes gland. i dont know what to do. oh yea nad i asked my doctor about hte odor and she said the lactobacilli (if u have a lot) can have an odor.... but i dont get it. if i have a lot of white blood cells that means that my body is trying to fight an infection...but what infection could i have??? when i am negative for everything? and im not allergic to anything cause i have changed my soaps and detergents and underwear....dont all that...went off my bc pilll....no change... even on antibiotics and yeast pills.... no change.... i give up......adn this change happened overnight! i always had thick clear non odorous disharge. even tnough im young could it be hormones? i asked several doctors who believe it couldnt be cuase i wouldnt have my period and all that stuff.... AAHHHH what to do
CommentI think Frank's advice was very good - get off those drugs and get a different doctor. Give your body the time to truly tell you what's wrong instead of reacting to the antibiotics. After that, consider using boric acid capsules - it helps balance the yeast without killing all the good bacteria you need. One capsule per night in the vagina for seven nights. Wear a pad during the day to catch the runoff. Keep us posted, OK?
CommentWell, it's back and I'm sick of it. Stress and not eating right made it come back. Now it involves my bladder. I've had it now since February. My bladder is now leaking uncontrollably and my my vulva is swollen and painful. It's driving me crazy. But, I'm trying to focus on getting better and will not give in. I found something today I thought I'd share. The site is: www.springboard4health.com/notebook/health_candida_albicans.html. There is a paragraph that states: At the 1985 annual meeting of the Infectious Disease Society for Obstetrics-Genecology, it was reported that cellular immunity to candida was markedly reduced in those patients who had been diagnosed with chronic candidiasis. It is speculated that prostaglandin E2, an inflammatory mediator, was produced by macrophages (part of our cellular immunity) which interfered with the killing of the candida. In simple terms, chronic inflammation associated with chronic candidiasis leads to immune suppression by "over" stimulating macrophage to produce inflammatory prostaglandin E2. It is likely that excessive free radical damage to macrophage cell membranes causes activation of the inflammatory series including prostglandin E2. I hope this gives someone else an ah-ha moment. I'm going to follow the advice and I'm also working with a doctor of nutrition and an acupuntrist that does NAET clearings. I'll let you know how I make out. Tomorrow I'm scheduled for a CAT scan. The doctor wants to rule out kidney stones. But believe me, there is no doubt in my mind of what this is. I've been down this road before (minus the bladder being affected)..
CommentThank you for the input. I havent been on anitbiotics for several months, and even when i was on them, there was no change at all. the thing that i am doing right now to help is i am taking acidophiilus supplements, and doing baking soda sitz baths with make my pH not so acidic and reduces my disharge but doesnt do much else to help.
CommentHello ladies. I am almost 24, and have vestibulitis. It has been 1 1/2 years. I have tried an array, as I am sure you all have, of symptomatic treatments to no or little avail. By little avail what I mean is nothing signifigant or trackable to a single method. The diet works at first, the backing soda works from time to time. But nothing WORKS every time, or most of the time. If there is someone out there, who has had interfuron injections, pelvic floor dysfunction therapy, and the dreaded word, surgery with success or failure...PLEASE, please email me. I am out of ideas, and sick of 10 doctors that can't agree. I want to take control of my life back more than life itself. I am currently in physical therapy due to a high rest tone found through biofeed back, it has noly been 4 sessions and its starting to look "helpful" but rather bleek. Thank you in advance for your compassion and advise, use my email
CommentTo Colleen I've had my problem since last Sept but no bladder problems until a month ago when I started getting terrible urgency and leakage. Also about the same time my vulva got quite swollen.That has gone now, so yours may clear up soon. Bladder problems are common with vulvodynia. However, they are also caused by an overgrowth of candida and that can switch to an auto immune disease which as I understand is what vulvodynia is. My PT has helped in some aspects but there is still a lot wrong and I am more and more convinced candida is playing a strong part in all this. My symptoms keep changing and it is so frustrating. My gyno wants to help and he was pretty sure as soon as he saw me that I had VVS, so at least he knows abouth the condition, but there are no easy answers, it's all trial and error and it takes so long and I get depressed and often cannot see any light at the end and now I'm rambling.
CommentHi Dawn: I also have had vulvar swelling and urgency lately. It had been a long time since this had happened. So far, I don't have any leaking, thank God. It is very frustrating though. If I sit on an icepack, the urinary symptoms go away. I may ask my Urologist for Detrol b/c I hate walking around being afraid that I'm going to start leaking. I don't have any infections going on. I thought maybe my problem was b/c of my kidney stones, but they're still in the kidney and my Urologist said they couldn't be causing the urgency and frequency. Here's hoping that all of us will find answers to this misery. Sue
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CommentHi everyone! Haven't posted in awhile. I'm on a high level of Cymbalta right now along w/10 mgs. of amitriptyline and 10 mgs. of Singulair. It's working pretty good. I can have days of feeling good and then days of feeling bad. I guess it's better than never feeling good at all. I pray for the day when I'll feel good every day. I have a question for everyone. Does anyone who has this awful disorder go swimming? I'm afraid to even try w/the chlorine. I feel like it's going to irritate me to no end and I don't want to even attempt it. The only thing is, I love to swim and I have two small daughters who love to swim. They aren't old enough to swim by themselves yet and I feel bad not being able to take them in the water. Especially since I love it and I could even teach them how to swim. Anyway, I know I should just concentrate on what I can do, but it just makes me feel bad and they are too young to understand. Does anyone go swimming w/no problems or does anyone have any suggestions or tips? Has anyone had problems w/chlorine? What about wet bathing suits? Can't that cause yeast infections? Thanks! I appreciate any help. Please respond here or to my email above.
CommentHi Lin: I've read about women with Vulvodynia going swimming. Some of them apply vaseline or other barrier to their vulvas before swimming in a pool or the ocean. Chlorine bothers some women and not others. I'd say it's a good thing to remove your bathingsuit as soon as possible after swimming. Good luck.
CommentTO the woman who asked about the symptoms appearing after JUST ONE use of KY Warming liquid. My symptoms did not appear until AFTER I had used this product. There is some type of Glycol in that product if I recall from my research. Some doc's believe the Glycol should not go anywhere near the vulva or vagina. Vaseline is a petro-chemical product. I would rather use something like organic olive oil - cold pressed so no solvents are used in processing - my Gynae gave me this tip - she is also an Oncologist.
CommentSadPussy - Sorry to be so late in responding. I have met the best Physical therapist in the world. After an evaluation with her, she helped me understand that my tight muscles were the problem. Going to her is great...she first started on my abdomen, doing this very skilled massage, working out all of the knots. I never knew how tied in the abdomen was to the vagina/pelvic floor until I worked with her. She would work out a muscle knot near my belly button and all of a sudden my vulva would flare up! She also does work internally...it is not painful. She can actually feel inside all of my vaginal muscle knots and works at getting them out! It is really important that you not strengthen your muscles right now. They are very tight and you don't want to strengthen tight muscles. My PT gave me the example of how hunched over we are at the computer - do you want to strengthen muscles at that position? Of course not! These muscles have to be relaxed and gotten all of the knots worked out before they are strenghtened. Hopes this helps!
CommentI do wish everyone would stop saying that there is no known origin of what causes vulvodynia. I can't say that I know the reasons of all the symptoms that I have read about here, but my PT can name 5 things that cause vulvodynia, including yeast infections, surgery, urinary tract infections, stress, and sometimes just sitting too long!! (i had to sit for too long after having some feet problems) Anything that causes trauma to the pelvic floor muscles can cause vulvodynia. The vagina is a muscle after all and it can have all the same problems as any other muscle in our body, including being tight and having knots! It is amazing that in reading on the internet all of the different conditions that cause discomfort in the vagina, there is not one that is described as ...."caused by muscle tightness and muscle knots." How can this be true? How can there not be a named condition for the problems caused by the muscles of the vagina...there are for every other muscle in the body.
CommentTo Sharon: I am so glad you included the words "I cannot name all the causes of these symptoms", because it made your post more realistic. I've been reading and posting since guestbook thirteen and I've read posts by some very intelligent ladies. Some of these women had theories of what may have caused their various symptoms, but for the most part the causes do seem to be a mystery. I say that because many women get yeast and UTI infections without the long term unresolvable symptoms we read of here. We have the theories which include environmental, genetic, birth control pill, and antibiotic causes to name a few, but nothing that has been proven. Sure trauma can cause nerve damage and muscle damage but while some of those cases can be treated by various methods we still have a vast number of sufferers left in the dark by current medical experts. My wife has had a recurrent tear at the six o'clock position of her vulva for years now, no one could explain the thinning skin but the doctors were willing to have her try all sorts of medications in a worthless attempt at treating a symptom for which they could find no cause. We are probably looking at more than one illness or problem clumped under the name "Vulvodynia". Maybe someday several causes will be isolated including autoimmune, but until then doctors will be prescribing many unnecessary medications or trying to convince sufferers that it's all in their heads. How can it be that one course of antibiotics can cause severe vulvar pain and doctors cannot make the connection or undo the damage? If the symptoms are caused by yeast or UTI infections, why do they not respond to medications that help other women who do not develop Vulvodynia while treating these infections? You ladies and all women deserve better explanations , diagnosis and treatment, but it will take more than posting on this message board to make that happen. The term Vulvodynia and all the symptoms and vocabulary associated to it have got to move from the quiet conversations of doctor/patient and sufferer to trusted friend, to the worldwide media. If erectile dysfunction can be plastered all over the tv, then so should this serious, painful illness. What upsets me most is that while tv and the media is male dominated, a powerful woman like Oprah could have opened the door to finding answers to this mystery but she has remained silent except for a giggle at the mention of the term. Those of you who are able enough should hold marches and protests to bring attention to the word and it's meaning. My wife has been willing to accept her "Fate" in silence, but that attitude is not going to change the future. Vulvodynia needs a champion, a leader, a fighter, a woman who can change the future. Someday.
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CommentI have not posted in awhile, I was diagnosed last year, went to gyno for yeast,got gobs of meds to no avail, was referred to specialist who is suppose to know something about this.Was on elavil 100mg,estrace---helped about 40-50%--of course sex is out of the question.She gave me a scrip for linocaine5%---I have not filled it yet, told me to use when having sex---forget it, I cannot even think about,never mind do it. I was wondering if anyone uses linocaine for releif other than sex. Elavil makes me sooo tired, than lo and behold I go to her on 6-18, she says i have yeast infection again!! Well now I am in hell, I told her I was allergic last time to diflucan----she gave me a script--quite frankly I did not even look at it so floucazane or whatever and took it, well my face swelled up,I got welts---and I have been miserable ever since---I am burning down there and swollen, I am on Desperime100mg,Estrace, and boric acid suppositores, sometimes I put olive oil up there but that even bothers me. I asked her if I should try phy therapy,she said yes, unfortunately my insurance is not paying for her, and will not take referral for her. I will have to go to my primary care and get referred---so far looking into therapists in my area(Morganton-Hickory-Asheville N.C))and in my plan--not any so far do pelvic floor. I am hoping that is partly problem--I know if I lay down I feel better, and if I move around alot(I am in ladies senior basketball team, we are going to state finals)I feel a little better.After a shower I am miserable---use Aveeno liquid soap and nothing down there! I called ofc today because I was hysterical and depressed last nite, I told them what was going on,they said somebody will call right back---well here i sit in agony---no call---but it cost big bucks to go there!!! Sorry I am venting---I only wish somebody would find out something to relieve our agony. I am 58 and had been very active, biking,kayaking,motorcycling---sports---now I just sit around and cry. I read alot of postings and don't know what course I should take---I have read alot from Frank---u are understanding. I don't feel like a woman anymore, just an "it"-my self esteem is low, I back off from my husband, I know I cannot handle this much longer. My mouth even burns to my esophogus---I have only just stopped my period in the last 2 months---so hormones are all screwed up,my eyes are dry, and I read that could be "Sjogrens syndrome". I wrote an email to Meredith Veira on the Today show but I don't know if they would even get into this. Frank is right, Oprah who has Dr. Oz on who discusses some really personal stuff should address this-----sorry I am venting, and hope we all find someone or something that will help us.
CommentFirst thank you so much for your insight. I just happened to get a book back from a friend that was gone for ten years. Women's Bodies, Women's Wisdom. There, right in front of me were the words "Intersititial Cystitis". Wow! It has a name!!! It explains my problem to a T. In addition I read about bladder infections and the emotional connections that are attributing to them. That also hit right on the head. I was actually going around in my head saying my vulva is very angry, and it was (LITERALLY)! Anyway, I went on that website discribed earlier on in the month for yeast and got the green powder. It was amazing, the glands on my neck started to swell like my body had been charged with spinach and now was going to kick the yeasts' ass! And it did. God do I feel better. No more leaking. I even had a good cry about the things that I fthought I left behind long ago. Thanks again for the heads up. It sure helped!
CommentCAN ANYONE give me any insight/opinions on the effectiveness of NYSTATIN * compared to * SF722. An allergist/environmental doctor told me take Nystatin for several months- BUT, Not just orally- vaginally, nasal spray, etc.- wherever there is a hole, basically. Then my chiropractor at home "tested" me (using muscle testing) and said that my body would be happier with SF772. In the meantime, confused about what to do, I found DONNA GATES' BODY ECOLOGY DIET. This is a strict anti-candida diet. I felt soo sick the first week, and for some reason very very constipated. But feeling better now, though still havent taken any drugs/supplements. Just digestive enzymes now and then, plus magnesium and Triphala for my bowels. I know w/o a doubt I have LEAKY GUT- like Lynn, I feel symtoms w/in minutes (irritation, and often discharge- even if the food has zero sugar!!- strange!). So, I need to get this candida thing out!! After years of PT my pelvic floor muscles are still so tight, and I have irritation and redness in the vulvar area that wont go away. I know there are a million blogs and books out there about candida/"candidiasis"- But I wanted to get an opinion here, from woman who understand how specific ailments (whether it be candida overgrowth or whatever) can unfortunately target our most sensitive areas. : (
CommentI have used SF722. It was very strong for me and I only used a few drops. It works but you may have bad "die off.". But just the SF722 alone prob. won't cure the yeast. It must be a combination of killing yeast, bacteria, building immune system and tissues, strict diet, etc. Before I swore off meds, I tried Nystatin. It made me worse as did most other yeast meds. My suggestion: try EVERY possible supplement/herb you can before taking anymore pharma meds. All they did to me was make me worse and worse and almost killed me. Good luck, don't give up!
CommentDiana: I have VVS. I use a compound of lidocaine 5% and petroleum nightly. I apply it with a cottonball and leave the cottonball on overnight. It has given me more relief than oral medicine. It is soothing and not numbing. My gynecologist says it can take 3-6 months to see results. I have been using it for about 4 months. I still have significant nerve pain from touch at 4,5, 7, and 8 o'clock positions in the vestibule but my daily irritations were decreased after 2-4 weeks. If you do get a script for this just FYI you have to have it filled at a pharmacy that does compounding (if I had known this, it would not have taken me almost a week to get it filled!).
CommentI'm not sure but my primary care doctor thinks I might have vulvodynia.Based on what I've read so far I think I might too.I tested for a number of STDS including herpes & nothing was found. No vaginitis or trich. My itching & burning are in different areas & because of this my fiancee thought I was crazy & then there were days that there are minimal discomfort. So when my Dr. told meacouple days ago & I started researching I was somewhat relieved but it's not very comforting since most women suffer it seems forever. I've been trying to click on the live chat link to see if I could talk with some other ladies going through this but with no luck I've been so depress & I haven't been eating or sleeping too well because of this I'm not doing 2 good. I've had a sorethroat twice over a period of 2 weeks. Keep me in prayers & if anyone have any info. to share you can e-mail me
CommentTo Diana: So sorry you are going through this hell. I can't understand how your doctor would prescribe the lidocane given your more urgent and painful symptoms. We know sex is important, but it has got to take a backseat until you have calmed your body from this time of pain. I understand how yeast overgrowth can cause the burning, itching, redness and pain, but it seems that you are doing everything possible. I have a couple of thoughts to throw out and hope you don't mind. First you you have any problems with sugar, such as mild diabetes? I head that can cause problems with yeast. Secondly, I had a friend years ago who suffered from ulcerative colitis. He was in severe pain and extremely limited by the symptoms. His doctor felt the cause was autoimmune and he put him on a course of medication that was designed to prevent rejection in transplant patients. The medicine supresses the immune response and it helped my friend, but it is a very serious medication requiring constant monitoring. Someday if the causes of vulvodynia are not isolated and treatable, this may be an option. I don't think any gyn will pursue this kind of treatment, it is out of their realm and far beyond anything they deal with. If the doctors only understood how serious your pain is they would not be satisfied with sedation and the same old routine. Diana, if you were not the sufferer but someone offering help where would you suggest this person start? In other words what needs to be addressed first, the pain, the recurrent yeast and it's source, the hormone imbalance, sex? I love my wife and we're lucky that we can still have sex, but if she was going through what you are sex would not be on that list at all, and I'm a passionate man. Please, regroup, consider a different approach or doctor, maybe during this time of change in your body you need some changes to your diet? Small things like soy may help in addition to the meds. Best of luck and please share your story, I'm praying it gets better.
CommentThanks for your insight. Im glad that SF722 was helpful for you even if Nystatin wasnt. I actually took SF722 for a while- three pills a day- and felt nothing- but I was still eating tofu (which is BAD for you- esp. if you eat it everyday like I pretty much did) and eating wheat-free waffles every morning that are made w/ organic cane sugar (ITS STILL SUGAR!) and lots of grains (lots of jasmine/basmati rice) b/c I thought grains were good for me. However, I was and still am wheat-free and gluten-free (for 3 years now). I wonder if taking Nystatin the way this doctor proposed (that is not just orally- Plus mega doses of probiotics) is better or worse than just swallowing pills (?). hmmm... But I know of at least one person who says this is the BEST antifungal regimen/program she has ever heard of compared to all the millions out there- and she sees a LOT of women with candida and pelvic pain. So Im still on the fence- I know people are saying Nystatin made them worse or better and then worse again). BUT this is a TOTALLY different protocol from any other ones Ive ever heard of- just same drug- though thats no small detail, right?! I can say though that my OBGYN wanted me to take Diflucan b/c she said I had some "imbalance" and thought would be good to take something even though she had no idea what the "imabalance" was exactly. I said "NO" b/c in that case my body really stood up and said- this stuff will definitely just make you worse, and help create even more resistant yeast to fight. Most people Ive heard that take Diflucan end up taking it at least two or three times/courses of treatment and still may have problems. Nystatin isnt as bad for you or your liver, but maybe its just that- the lesser of two evils- thats still not good!! Also a note on PROBIOTICS b/c I know that everyone and their mom is taking them: Ive noticed that when I just take probiotics or eat natural probiotics (fermented food, cultured vegetables)- my body sends me signals, saying "no." I definitley agree- YOU HAVE TO ATTACK IT FROM MANY ANGLES- just as taking only probiotics wont help (for ME- probably b/c the little yeasty guys are taking up so much space in my porous weak gut), so will taking just antifungals not be enough as well. If anyone knows any amazing naturopathic doctors in the San Francisco or NY area, let me know. We can swap, since I know several doctors and PTs on both coasts. AND if anyone wants to talk about the BODY ECOLOGY DIET, let me know- if you have tried it or just want to ask me what it is- though the website has all the info youll ever need. Oh, and has anyone ever taken SF722 WITH ThreeLac??? I know there are some huge threelac fans out there. Thanks. Also, can I just say to all the people doing PT/biofeedback- have you considered adding craniosacral? it can be really amazing- really.
CommentRK, check out this site: www.icaroadtorecovery.com. Read through all of it. I think you will find it interesting. Good luck, don't give up!
CommentJust checked out the suggested website from MR. My intention in writing today was to express my success in stopping my bladder problem (IC). I took the route of chinese medicine and had NAET's done for bacteria and yeast together. Success! My acupuncturist followed it up with a blend of herbs as well. I feel great! I also have done a lot of reading and have come to the realization that I was literally pissed off. I have issues about women and I'm now working on them, but I've gained insights that I didn't realize were there. I thought I left the past in the past, but apparently not. I hope this helps someone out there!!!!!!
CommentI have been reading various entries and registered yesterday, but have not heard from anyone yet with suggestions or comments. I have suffered on and off most of my life. I am now 52. I am on 60 days of vagifem, which has helped some. But, I am still suffering. I can't use any topical or vaginal treatments for yeast or bacteria, or I get a real skin flare up. I can't even use cortisone creams. They irritate me. I am only sore one the outside vestibule area. Inside the vagina there is no irritation, but I believe a yeast and bacteria infection and the myriad of meds they tried to use made my condition worse. I have had it for 4 1/2 months. Any suggestions? Any doctors in swfla you could recommend?
CommentTo AJ: Have you considered or tried a "skin barrier" topical? There are several over the counte and several prescribed that will help keep irritants off the outer skin that's hurting. This is just one I got off the Internet, ask your doctor. ILEX SKIN PROTECTANT PASTE is a Biomedical topical skin barrier for use on a wide variety of dermal wounds and mild to severe skin irritations. ILEX is hydro active and helps prevent EXTERNAL MICROBIAL INFILTRATION ON CUTS, ABRASIONS, WOUNDS, MINOR BURNS, MOIST WEEPY WOUNDS, and forms an occlusive barrier. Effective against digestive and urinary acids and enzymes and wound exudates. ILEX is alcohol and latex free and not absorbed systemically so it is safe on all skin types including Neonates, Pediatrics, as well as the Geriatric patient. ILEX can be used safely in conjunction with other prescribed topicals including antifungal, antibiotic, and steroid indicated therapy. ILEX is the only skin barrier that exhibits a 0.00 cmh moisture penetration rate. ILEX IS A VERY EFFECTIVE TOOL FOR MOTHERS UNABLE TO CHANGE DIAPERS FOR PROLONGED PERIODS OF TIME. Ilex maintains excellent skin protection and effectively prevents diaper rash from occurring in these cases.
CommentCan someone tell me if there is anyway to search for a specific interest in the guest books? I myself have interstitial cystitis, fibromyalgia, vulvodynia and have had thyroid cancer. I believe they are all related in some way. I know that the first 3 are for sure. I have actually read that IC, vulvodynia, fibromyalgia, chronic fatigue and something else, that I can't remember, often go hand in hand. If you have one thing you are very likely to have or get one or more of the other things. It sounds as though Dr. Glazer only does pelvic floor stengthening although vulvodynia is so much more than that. It is chronic irritation and burning and frequent yeast infections. It feels like acid is coming out of your vagina and no one knows why. It is pain during intercourse and for me very frequent urination-30 or more times a day. The more irritated my vagina-the more often I go. Sometimes I go more than 50 times per day. The urinary frequency came on suddenly when I was 12 and I am now almost 50. The vulvodynia began when I was in my early 20's and had sex 5 days in a row. I became irritated and raw and then it just got worse and worse. I have found some things that help but would be very interested in anybody who has frequency and chronic vaginal irritation. Also does anyone know of a doctor in the Atlanta area who can help? I know of one who made my life much much worse. His name begins with an M. If you need to know I will tell you who so you don't go. Thank you to all who take the time to read this and/or respond.
CommentHi, my name is tanya and i am 23 yrs old... I live in south africa and i have vulvar vestibulitis! I have had it for 6 months now and it is the most depressing disease i know of. No doctor has actually diagnosed me with this, but i know the pain i feel and the pain i have during intercourse!!! If anyone knows of anything i can do, PLEASE help me:(
CommentHi, my name is tanya and i am 23 yrs old... I live in south africa and i have vulvar vestibulitis! I have had it for 6 months now and it is the most depressing disease i know of. No doctor has actually diagnosed me with this, but i know the pain i feel and the pain i have during intercourse!!! If anyone knows of anything i can do, PLEASE help me:(
Commentto Colleen: What were the Chinese tests you took?
CommentI was so happy to find this site...I have been suffering from Vulvodynia for over 30 years...I was diagnosed by Dr. Marinoff in the early 70"s...my problem was created by damage to the inner pudendal nerve, so I feel that I at least had that knowledge to start with...over the years I have tried many alternative therapies..I did the muscle therapy and biofeedback, which really helped, I did accupuncture,that also helped and the one thing I haven;'t read in any other emails ( and yes,I have not read them all) is HYPNOSIS....this therapy brought me the most relief...I was lucky enough to find an excellent therapist who worked for many years in the Carribean at a women;s clinic, and he actually knows what vulvodynia is and had treated it before...the therapy is amazing.. totally non invasive and you are awake and coherent the entire time ( no quacking like a duck) .if anyone wants to talk more about this option, please contact me and I will give you the info you need to find someone great to help you. .I feel that one of the main components of this illness is stress related, and the more stressed we are, the worse the symptoms, altho I believe this is true of any illness...so all I can say is that learning to control our stress, and that is a big order due to the nature of this illness, will help immensely. Yoga and deep as well as meditation help here... I hear so much pain and stress in these e mails... As I said I have had this disorder for over 30 years,but I am winning the battle as I am not letting it control my life and it seems that these therapies build on one another until you find some relief...I think we live with this disorder and manage it everyday...not so much fun, but hey, it can be done...here's a big thank you to Dr. Glazer for providing this outlet for so many women to find some solace in each other...
CommentDoes anyone know of a doctor in the Ft. Myers area (even as far north as Tampa) who is experienced with vulvodynia? Please e-mail me if you do. Thanks.
CommentTo Jean. The technique is called "NAET's". I'm pretty sure I've looked it up on the internet before. It has to do with energy. I actually believe the technique was developed by a women in California. But don't quote me on that. The technique is followed-up with acupuncture and chinese herbs. Hope that helps.
CommentColleen----what are NAET tests, are they done by a homopathic doctor? My massage therapist wants me to go and see a nathogy person(I think that is the person, she says she goes every 2months and has PH chked, last time she had to take some herb and she feels great----never goes to regular doctor. I am really starting to think western medicine has no clue. I would like to know if there is some permanent nerve damage that has been done, my mouth burns and is like methol, in addition to the burning vulva. Hopefully someone will help us, I am going to contact Ophrah, and maybe More magazine---people don't really know how we suffer with this
CommentI am 49 yrs old have had one vaginal dlvry/2 er C-sections. My girls are 21, 19 and at 40 had a boy. I hope my experience helps more of you than not. I experienced vulvadynia for the first time a year ago.I was advised that I had a typical case of vulvadyinia (inflamatory disease). The burning, pinching and itching drove me crazy. I had spent weekends away only to remain in the bathroom with ice and constant water rinsing frustrated and in tears. So I went to the best of the best in this field. I was on a regiment of an antihistamine and used the biofeedback method. At the end of a three month period I really didn't feel that I was getting any great results, with the exception that I strenthened the vaginal muscles (with the biofeedback) and eliminated the incontinence I was experiencing. I was then introduced to an antidepressent. After researching this medication I realized this is so not for me, it scared me to death. I am not a pill taker at all. So I began to take a closer look at my diet (I've been to allergists b-4 with my children so I had a good idea of what to look for regarding diet) but I was missing something. So I went to an accupuncturist. Believe it or not there I found I was alergic to night shade vegetables which are eggplant, white potatoes, corn, green (yellow e.g.) peppers and dairy, sugar and yeast I already knew I should have stayed away from (by the way the allergist was way more expensive than the accupuncturist). At the same time I had been investigating a product from my local heath food store that supports inflammatory disease;zyflamend. It has been three weeks now, I've stayed away from those food items, I've been taking two zyflamend daily, and I've had 2 accupuncture appointments. I not only feel GREAT but I have no more pain (none) & I've been able to have intercourse without any pain AT ALL. Please ladies take your health into your own hands, some of us know our bodies better than anyone out there. Look if this works for you terrific, if not keep searching. United we stand, none of us should be expected to live with this kind of pain or to be on antidepressants for any length of time. God Bless, faststep.
CommentHas anyone else had symptoms of vulvodynia after an attempt to remove bikini hair with a laser? I have heard of this occuring in many of the people who try it.
CommentDiana - NAET's are not a test, it's a technique used by an acupuncturist or homopahtic doctor. It's a clearing of the energy of what ever the body reacts in a negivtive manner. May I make one suggestion (in reference to this site). I feel we talk about all of our symptoms (not that there is anything wrong with that, at all). But I keep thinking that this condition in some cases, may have to do with what we all may have in common on emotional and "belief" (how we precieve things) level. Do we have similiar ways of thinking? How do we all process stress? How do we precieve the relationships in our lives. Maybe we would see some similarities and maybe that might have a bearing on why we developed this (again depending on the type of vulvodynia you have). Just a thought.
CommentColleen: I think we all have in common suffering. Probably long term suffering gets to everybody. When I don't have the problem (there's been quite a few years), I have a totally different mindset. I'm sure everyone is pretty much the same. It's frightening to think of not knowing when, or if, things will get better. I am still hoping someone has the name of a doctor in Southwest Florida I could see if I dont' improve. Thanks.
CommentHi guys, its me again! I just found a doctor yesterday who said he wants to check me and find out if i have vulvar vestibulitis and says that if he finds out that thats what it is, that he is gonna help me and remove my vestibular!!! What do you think???
CommentTo Tanya: He sounds like a butcher! That's the best medical science can offer? Amputation? Imagine if that was the treatment for erectile dysfunction? I honestly believe if there was meaningful research and public awareness the options for your pain would be very different. If you have the time, start reading past guestbooks one at a time. I've read of several women who had the vestibular glands and some tissue removed with different results. Please do not allow this doctor to push you into surgery. Best of luck.
CommentHi Everyone! I was having trouble with IC. Leakage and then vulvular swelling again for the third time in my life. First time 8 months long, second time only a couple months, now 5 months and counting. Anyway, I found a website that may be of interest to those of you who suffer from yeast. Actually, if you look-up ibprophen and killing yeast you'll get a few scientific studies that have been done. I found this particular site the most clear. http://jmm.sgmjournals.org/cgi/reprint/49/9/831.pdf I hope you find encouragement in it too! I'm trying just taking plain old ibprophen. It was only on rare times that I would use it. I'm hoping this is a success! Take care! And speed healing!!!!!!
CommentHi all... I just wanna know one thing!!! Has anyone ever heard of someone that has been cured of vulvar vestibulitis, what i mean is has anyone ever had it and its gone away without ever coming back???
CommentHello Tanya, I had vulvar vestibulitis for about 1 year and a half, and I'm curing it with homeopathy since about the same period of time. My treatment needs a lot of time, but it's always progressive. I'll definately let know everybody here how things go even after, it could be the proof that homeopathy works perfectly! Please, read first what the vulvar vestibulitis is, and then decide going under the knife. You need to know the character of the sickness, there is a lot in internet about. It's enough searching in google describing your type of pain, and you'll see what will come out! Take care!
Comment
CommentHi, I have been reading all the guest books starting from number one! Firstly i wanted to thank you Frank for your advice! Yesterday to my astonishment i recieved an email from Dr Howard Glazer, BIG, HUGE WOW!!! He informed me that he had just trained a group here in South Africa and gave me there details. I contacted them straight away yesterday and have made a booking for friday the 27th of July, im looking so forward to going!!! I read in some of your guys postings that you pay like $300 for a consultation, i think thats ridiculous... Here in South Africa we pay around R300 which is about $42, and we have some really good doctors! I would never be able to afford a doctor there!!! And here in South Africa our medical aid, which i think you call insurance pays for almost everything!! Take care all, and have a FABULOUS weekend, God bless
CommentHi, I have been reading all the guest books starting from number one! Firstly i wanted to thank you Frank for your advice! Yesterday to my astonishment i recieved an email from Dr Howard Glazer, BIG, HUGE WOW!!! He informed me that he had just trained a group here in South Africa and gave me there details. I contacted them straight away yesterday and have made a booking for friday the 27th of July, im looking so forward to going!!! I read in some of your guys postings that you pay like $300 for a consultation, i think thats ridiculous... Here in South Africa we pay around R300 which is about $42, and we have some really good doctors! I would never be able to afford a doctor there!!! And here in South Africa our medical aid, which i think you call insurance pays for almost everything!! Take care all, and have a FABULOUS weekend, God bless
CommentDoes anyone here have a tattoo, theres something im looking up on???
CommentTo Colleen It's interesting that you ask about the type of people we are, I sometimes wonder if certain types are more prone to the same sort of illness. i've always suffered from anxiety and I can't seem to handle stress well. I had therapy in my twenties and that seemed to help. In my mid thirties i had breast cancer and felt that it helped clear some mental issues I had. But I also think that the chemo and or tamoxifen triggered my vulvodynia because I noticed little symptoms now and again that I had never had before the cancer. Then last year after I had a UTI it just all flared up and has never gone away. The symptoms change but it's still basically sore/burning, can't wear tight clothes and sitting down aggrevates it. I am on a diet which is meant to help control auto immune diseases because that's what vulvodynia is, but I've only been on it two weeks so I should give it a bit longer I guess. I do believe though that it is a whole body issue, something is out of balance and if we could only find out what...... Was it just IC you had or did you have other symptoms like burning? It's great that the chinese stuff is working for you. That or homepathy is my next step, western medicine just doesn't have the answers.
CommentHi Dawn. Thanks for the response. And I'm sorry to hear you've been through so much. I would have to say I'm the same as you about stress. I've become better with age, yet still fall back into a pattern of distress. Unfortunetly, for my symptoms, I've had a set back on the clearing I had from the NAET"s. It didn't work and I think I know why. I was just tested by my nutrionalist (through bloodwork) to see if I had systemic yeast. It was a negitive. He's now having me take a test this week for leaky bowel syndrome. I've incorporated more fiber in my diet (along with acidophilous) and that seems to be helping. The funny thing is I do feel my immune system is so weak that even the little bit of yeast I have in my body is affecting me. I feel like I'm walking this thin line where anything can just throw me over to problems . I'm still also taking my green powder. I'll let you know the update on the leaky bowel test. I'm hoping that's the problem. According to my Dr. he said you can get a lot of weird symptoms (especially autoimmune problems) if you do have LBS. He explained that if your not processing things through your liver that it goes right into your bloodstream. The immune system then sends out an alert that there is something in the blood and then sends out prostaglandine E2 (which causes inflammation). I think the inflammation went to the vulvular area and the bladder because of how I'm handling things that are bothering me in my life. From the things I've looked up between body and the mind it really made sense to me. I wish you the best and I know we'll get to the bottom of this. I have faith in that. Take care.
CommentI am searching for an answer to my health problem, but not sure if this is what I have or not. I do share some of the same symptoms as ones I've read in this book. I had a hysterectomy 12 years ago and have had problems ever since mostly vaginal. Just looking for an answer and a cure if possible.
CommentWell just as I think things may be improving life throws some more sh*t at me. Now my clitoral pain is back, I haven't had it in weeks and thought my physio had dealt with it, but oh no here it is again. I don't believe I'm really here living this nightmare. The only thing keeping me alive is my husband because I know he would be devastated if I died, but I want to check out now I really do. My life is all but over I don't know how long I can keep going like this, how can you fight an enemy you can't see, if it was cancer then you know the enemy and you have a chance or maybe you don't but at least you know, but this!!! This is unreal.
CommentHey Dawn I know how you feel, it certainly is frustrating as I sit here typing I am burning like hell. I think we should all email Oprah and beg for her to do a story on this and get it out there, God knows Dr. Oz talks about "poop" enough.People don't realize how debilitating this all is.I am on a Senior Basketball team that will be going to to State Finals in Nov----when I practice believe it or not I feel better, I am running around and whether it is that my mind is occupied or what. Then when I stop, bang it's back, I try to turn my brain off to not thinking about my vulva, but it doesn't work. I have always been very worried and anxious all my life so this just adds to the mix. Please hang in there, get some counseling, my husband & I are planning to do that. I thought I found a great physical therapist in Asheville and I spoke with her and she does do alot of vulvodynia patinets with some success, however she is moving to Atlanta. By letting each other know about our successes and failures hopefully we can help one another. The nva site is pretty good.www.nva.org. I just joined and got a listing of doctors and physical therapists, now I can fight with my insurance company again, my doctor is on this list. To Tanya----yes I have three tatoos---- It's hard to believe there are so many women in agony and mental turmoil over this dreadful condition...
CommentTo Diana & All: If Oprah would discuss Vulvodynia on her show I think it would forever change the course of this illness, unfortunately myself and others have tried to contact her show regarding this issue to no avail. Oprah said the word "Vulvodynia" once years ago during a show on intimate issues and she giggled. The guests were the Berman sisters, I beleive they are both doctors. Oprah has a real problem discussing anything having to do with sexuality, intimacy or the body. Maybe her own history as a victim of sexual abuse left her with emotional scars and no one can blame her, but ignoring this illness along with it's many sufferers does not make it go away. Perhaps the time is right to try again, to try and have the most powerful woman on tv shed some light on this very intimate and vary devastating condition. Best of luck and please post any specific contact information to reach her show if you want more support.
CommentTo Dawn - My heart goes out there for you. I feel your pain. Please be strong. You'll get through this. You'll get answers, please believe. It's wonderful you have a loving, supporting husband. Lean on him for strength. I want to through some things out there for you; to see if we have similiar things going on. Maybe this could help. My thoughts are if food is making any kind of difference in your symptoms, that's a big clue. Also if your stools are not "normal". That's a big clue too. Then you can start evaluating if it's food allergies, etc who knows maybe it could be leaky gut or something similiar. Let's figure this out. I really believe we can. We didn't come into this world with this, it developed but, I do believe we're given clues and we can figure it out. Hang in there. This is a temporary set back. You'll move forward. I know you will.
CommentTo Colleen: I also believe food has a lot to do with these problems. Since I have been on this anti candida diet and taking nutrients I have felt more energetic and healthy inside, unfortunately it hasn't helped my symptoms but it is early days yet. I am still suffering from constipation which I notice is one of the leaky gut symptoms, I am hoping if I keep on this diet it will gradually help me get well again. I am also going to start taking things to help with IC because I may have that as I read that it causes genital pain/problems and all this started from when I had a bad UTI last year, so it seems quite possible it is bladder related. I feel a bit better today. My pain has subsided quite a lot. You are right about my husband being a rock, but I don't want to keep putting on him as he has been through so much already. If you wanted to email me anytime please do so and maybe we can talk more about things.
CommentDawn: My heart goes out to you. I have suffered with this on and off since my late teens. I am now 53. It was brought on by overuse of anti-fungal drugs and other treatments. I have thought about suicide too, but I always have remembered IT DOES GET BETTER OR GO AWAY FOR A WHILE. So, please hang in there. Keep your husband and family and friends as reasons to stay alive. As well as all the good times you are yet to live. If you are in sever pain, get some pain medicine. It really helps. I used it for a month a few weeks ago when the doctors had me all messed up again with anti-yeast and anti-bacteria infections I got (probably because I let my estrogen get too low and lost the 4.5 ph). I'm a little better, off the pain pills, not in as much paing, and not suicidal. GLAD I DIDN'T DO IT! You will get better again. Keep trying things and take pain pills to get you through the hardest times. No one should have to suffer in this day and age with all the meds we have.
Commenthttp://www.freewebs.com/freesexvideos/
CommentHi Al I first came across this web site back in March of 2005 when a doctor mentioned I might have Vulvodynia. I had never heard of such a thing. I was saddened by the stories I read and prayed that I didn’t have this Vulvodynia thing. But I do. However, today I am 95% pain free… and life is good! One thing that I thought was missing here was the success stories. I know this thing is different for all but I would like to share my journey in hopes that it may be helpful to others. I was your typical case study. Female in her early 40’s with burning, pinching, raw feeling in the vulvar. The pain was so excruciating. I visited multiple doctors. I tried multiple therapies to include Diflucan, Elavil, Lidocane, Amino Serve and Cryosurgery (for possible cervicitis), LEEP, Percocet, Vidocin, Acupuncture, Calcium Citrate, white cotton underwear, chemical free detergent, plain ole ice in the crotch, haven't worn panty hose in years, etc. etc. I was reading and trying everything. Nothing provided any decrease in pain. I was going insane! This went on for almost 2 years with brief episodes of relief. In October of 2006, I thought I would try biofeedback so I e-mailed Dr. Glazer asking for therapists in the Arizona area. Dr. Glazer couldn’t put me in contact with a biofeedback therapist in Arizona; but he did give me a name of a doctor at the Mayo Clinic that might be able to help. One of this doctor’s specialties is Vulvodynia. I couldn’t believe it! I went to see him in October of 2006. I was diagnosed with Essential (Dysesthetic) Vulvodynia. Finally, a doctor with a diagnosis!!! This doctor believes I could have an altered flora possibly due to a course of antibiotics I took prior to the onset of my symptoms for an unrelated issue. Or maybe my flora is so screwed up because of everything I have been doing over the past few years! (Nothing known for sure.) He put me on Vagifem to correct this along with a list of lifestyle changes to include using Oilatum unscented soap only, washing hair in sink, wear all cotton underwear, use Cheer Free detergent (no fabric softeners), use unscented white toilet paper, no perfume or powders, unscented tampons, Vanicream at night, rinse vulva every time after voiding with a small mixture of Domebora astringent and water, Astroglide for intercourse, and a bunch of patience as it would take 4-6 months to see improvement. By the end of December 2006 I was feeling better. For some reason, I had a small flare up in the first part of January 2007. But for the last several months have been 95%-99% pain free!!!! Thank God! And other than keeping up with the Vagifem twice a week, I had stopped all the other changes. Unfortunately, I had another flare up a few weeks ago. Luckily these "flare-ups" are only lasting for about a week. I did go back to see the doctor at the Mayo Clinic a few days ago. He added another dose of Vagifem per week and stressed the importance of sticking to the hypocontact vulvar care during treatment. So, that along with a handful of supplements (not sure if they make a difference but they can't hurt) is what I am doing and am feeling much better today and getting better daily. My pain is so very minimal that I can go about my daily activities while I wait for this thing to go away for good! I hope to one day have this whole thing behind me. I just wish I had found this doctor a few years ago and spared myself a few years of pain. He really was an answer to my prayers. I was also so very lucky to have a great Mom who helped with research and was a great support. And several months into this, I met my current boyfriend. He has been so very understanding, helpful and supportive. He was the shoulder I cried on when the pain just got to be too much. I can’t thank him enough for just being there! (T - You are amazing! I love you very much!) I hope some of what I have left here will help others in some way. If anything, I hope this will encourage you to be persistent in finding your answer and a physician that GETS IT! My prayers have always and will continue to go out to all who suffer from this. God Bless you all and Good Luck! Rebecca
CommentHi Rebecca, Would you mind posting the name of the Dr. you see in AZ? I'm so happy for your pain relief. I'm doing pretty well with Estrace cream. Thanks.
CommentDoes anyone currently have symptoms on just one side of their labia majora? I am currently treated with Neurontin but it's not helping. Also, has anyone been seeing Dr. Andy Roth or Dr. Ronald Meltzer?
CommentI am 26 years old and have been suffering from recurrent bladder/vaginal infections for over 10 years. I constantly have to make appointments with my gyno to be treated. I often have intense burning/itching/pain/redness/swelling around my vulva and I usually get treated with diflucan, flagyl, antibiotics for strep, lidocane for pain, and other topical ointments to no avail. Some of these "treatments" make me feel worse. I often feel very depressed, and I"ll just burst out in tears because of pain, anger and frustration. Luckily I have a very understanding partner, but not being able to have sex with him for long periods of time because of this, can put a strain on our relationship. I came upon this site as I was trying to diagnose myself online, since my doctors can't seem to figure it out and because I am currently having the symptoms. I felt so amazed to read about so many women who are going through this too! I feel relief in knowing that I am not alone. I plan on telling my doctor about the information I read on this site because I feel that I finally may know what is wrong with me! Thank you for this site, and for all the women who came forward and shared their thoughts and experiences. I feel better in knowing that I can start focusing on treatment rather that wondering what is going on with my body.
CommentRebecca - you mentioned you are taking supplements, which ones are you taking? Thanks
Commentwell i'm trevor and i live in the uk. i am 40 yrs old and have a nervous disorder since my childhood. i think having it has made me prone to depression which i experience on a regular basis. i want to be happy but i dont think i can be when everyday i have anxiety disorder. i would be happy to correspond with anyone that has a similar problem. best wishes from trevor
CommentDear guests, Can anyone tell me what there is about wearing pantyhose that can set these V V symptoms flaring up after months of pain levels down to 2 or 3? I was careful...bought queen size when I just take average..thought there would be no pinching or binding..and there wasn't. Had a successful evening of wearing the hose..and then I took them off and withinin a half hour....BAM!!! burning! ..that won't let up. I'm suffering ..again. Does anyone know why plain old pantyhose are so EVIL?
CommentRoxanne, have you tried cutting the crotch out of your pantyhose or wearing knee highs instead? Pantyhose can trap moisture, I suppose. I hope you find some pain relief.
Commenthttp://www.pelvicpainrehab.com/symptoms.html Sloan - yes that is normal, i think its called sebum. its a cottage cheese like build up. you can google it. if there is a lot you could have sabatiaous cyst too. try treating with hot bath and epsom salts.
CommentHi Dawn - Supplements I currently take are Calcium Citrate (of course) Magnesium, B12, Folic Acid, St. John’s Wart, Acidophilus, Flaxseed Oil, Grape Seed Extract and a Multivitamin. I try to take most of these supplements three times a day with meals. These are supposed to be good for the immune and nervous system as well as your skin. Others I have heard that are good for Vulvodynia symptoms are Olive Leave Extract, Alpha Lipoic Acid, COQ10, DMAE, Evening Primrose Oil, Hyalurolic Acid. These are also antioxidants to strengthen the immune system and may support the health of your skin. If anything, you will have a beautiful complexion! If you go to http://www.vulvodynia-treatment.com/ you can see more information about supplements for Vulvodynia. I purchased the treatment guide that contains great information, some of which I already knew. However, the supplement portion was very informative. The author (an ex Vulvodynia sufferer herself) explains what each supplement does and recommends daily dose schedule. Good luck! Rebecca
CommentTo the individual who requested information about a physician in AZ. His name is Dr. Stuart Fowler and he was a huge help to me.
CommentI'm just wondering, am I the only one that has had horrible experiences with doctors. Unproffesional office workers, unqualified "assistants", unsympathetic gyn's, worse...ignorant gyn's. I find that I've gone to many doctors to deal with my multitude of pelvic pain/gyn/vulvodynia problems, but I leave feeling worse than when I arrived. One of these people is supposedly one of "the best" in the field. Anyone else dealing with this frustrating situation.
CommentSloane, I've been to so many horrible Gynecologists since being diagnosed first with Lichen Sclerosis and then with Vulvar Vestibulitis. For now, I've stopped searching for a good one. Thankfully, I haven't been suffering too badly lately. I dread looking for another one and it makes me angry that there are so few Drs. who know how to treat Vulvodynia.
CommentHello everyone, I am having a cystoscopy/urethral dilation tomorrow 6/8/07 at 9.15 am and I am scared. My gyno/uro mentioned urethral syndrome maybe but after reading your letters and letters to the IC Forum I really think I have vulvodynia. After wearing tight jeans all day and into the night on the 10/6/07, without underwear,doing a lot of walking , sitting, getting overheated a couple of times, had a full bladder at one time , dying to wee and had a very long walk to toilet, I think I traumatised everything down there without even knowing it. during the following week I thought I had a UTI but was treated with two lots of antibiotics but didn't work. My symptoms are, a very sore urethral opening, very sore Skene's Gland on lefthand side of urethral opening and very sore clitoris on lefthand side. My clitoris is throbbing as I write this. I do have some urgency/frequency but the soreness skenes gland and the clitoris wake me all thru the night. I am so tired and am living on paracetamol/codeine. Doctor also gave me Lignocaine Gel 2%. Only helps a little, should I get 5%? My quality of life is awful, I can't walk, sit or sleep. It is the lack of sleep that is the killer. I could almost cope if I could get some sleep. Sorry I am waffling on but I am so pleased to have found you all. It is early days for me I know but I would like to try and get on top of this as soon as I can. I live on th Goldcoast in the state of Queensland in Australia and have no idea where to go for support or if there is any foundation in Australia. I think it is a great idea to lobby Oprah to talk about this suffering. Should we all email Harpo her company? This is my first wriing to a forum on the net so I hope I have explained my symptoms correctly.
CommentHello everyone, I am having a cystoscopy/urethral dilation tomorrow 6/8/07 at 9.15 am and I am scared. My gyno/uro mentioned urethral syndrome maybe but after reading your letters and letters to the IC Forum I really think I have vulvodynia. After wearing tight jeans all day and into the night on the 10/6/07, without underwear,doing a lot of walking , sitting, getting overheated a couple of times, had a full bladder at one time , dying to wee and had a very long walk to toilet, I think I traumatised everything down there without even knowing it. during the following week I thought I had a UTI but was treated with two lots of antibiotics but didn't work. My symptoms are, a very sore urethral opening, very sore Skene's Gland on lefthand side of urethral opening and very sore clitoris on lefthand side. My clitoris is throbbing as I write this. I do have some urgency/frequency but the soreness skenes gland and the clitoris wake me all thru the night. I am so tired and am living on paracetamol/codeine. Doctor also gave me Lignocaine Gel 2%. Only helps a little, should I get 5%? My quality of life is awful, I can't walk, sit or sleep. It is the lack of sleep that is the killer. I could almost cope if I could get some sleep. Sorry I am waffling on but I am so pleased to have found you all. It is early days for me I know but I would like to try and get on top of this as soon as I can. I live on th Goldcoast in the state of Queensland in Australia and have no idea where to go for support or if there is any foundation in Australia. I think it is a great idea to lobby Oprah to talk about this suffering. Should we all email Harpo her company? This is my first wriing to a forum on the net so I hope I have explained my symptoms correctly.
CommentI am 26 years old and have been suffering from soreness and pain at the 6 o'clock position of the vestibule for 7 months now. My OB/GYN and I are all but certain that I have vestibulodynia, though I did not want to face that fact at first and kept throwing out other hypotheses that I had read about. I have been reading up on this condition extensively, including many of the guestbook postings on this website, in the hope that I will be able to make a more informed treatment choice. So far, I have only started to adjust my diet to "yeast-free" and "sugar-free," but I have not tried any of the so-called "conservative" treatments yet (e.g. anti-depressants, anti-convulsants, surgery). Lidocaine provides some relief, but I am afraid of using it because at least one poster from the guestbook wrote that long-term use can actually sensitize the nerves even more and make the pain worse. My next step will be to try either an anti-depressant or an anti-convulsant, though I already dread the common side effects. I am not a fan of strong medication either - especially since I believe my problems started with the prescribed use of a low-dosage antibiotic for 8 months (to prevent recurrent UTI's) - but I have read quite a few professional studies, books, and patient stories that have credited these drugs with a great improvement in their condition. I do have a question for those of you who have had positive experiences (or negative?) with anti-depressants/-convulsants: is the weight gain pretty much guaranteed, or can you counteract the drug's effects with lots of exercise and a low-carb, low-sugar, etc. diet? Also, one last question: those of you who have had a vestibulectomy with good results - could you possibly share the names of the surgeons with me, please? My OB/GYN had a patient with vestibulodynia who succesfully underwent a vestibulectomy at the Mayo Clinic in Minnesota, but I would very much like to get more recommendations. Just in case it ever does become the last resort. Thank you very much for taking the time to read through my post, and I would be very grateful if even one person replied to either or both of my questions. Best, VYS P.S.: Somehow it is hard for me to give any treatment a fair chance once I have read about failure in individual cases. Does anybody else have that problem?
CommentYou said you were taking St Johns Wort - can I ask if you are taking it for depression or is it meant to help in another way? Dawn
CommentMaybe you have IC. Anti biotics wouldn't work for that and symptoms can include genital pain. Dawn
CommentHi I have suffered from vulval vestibulitis for all of my adult life but have only been diagnosed this year.I have had two bouts of severe depression and my relationships with men have been very difficult.;because of inevitable sexual problems.I have been taking gabapentin which has helped the pain but has given me weird side effects,the main one being a distinct lack of co-ordination in my arms(like they dont belong to me!) and a srtange feeling of detachment.I was wondering if anyone has experienced similar side effects from taking gabapentin; my doctor has told me to cut down on my dose from 1200 to 600mg.looking forward to a response! Abigail
CommentI've read many of the postings, but haven't really seen one like what I have experienced. I had surgery for organ prolapse, first one being a hysterectomy, with two other surgeries following. After each one, I experience vaginal pain, burning and general discomfort. Depending on which doctor I saw, they either thought it was in my head, would eventually go away when I totally healed or prescribed meds that didn't really work. This condition still recurs every now and then even though my last surgery was two years ago. As I write this now, I am having bladder pressure and the same vaginal discomfort as before. I am so depressed and don't know how much longer I can take any of this. I suffer from anxiety and stress too. I know others on here have felt the same, so I guess I just want to vent and know that I have people reading who understand this feeling of hoplessness.
CommentSOmeone in July, I think the 19th, mentioned Dr. Oz on Oprah, I have thought about him and our troubles many times. I bought his book YOU, On a Diet and I almost dropped when in the middle of his book is a test about how much you know about your body. It was a multiple choice test and there was a question, I can't remember what it was, but one of the multiple choice answers was Vulvodynia. It was a WRONG answer of course, but I thought I'd just die that that word was on there!!!!! I haven't read any of his other books, maybe Vulvodynia is mentioned in one of them.
CommentYes, I have a tattoo. I got it about 3 years or so before I got VVS
CommentThanks for providing such a useful and informative website. Keep up the good work and continue to provide more quality information. Hmark, http://www.herbmark.com/5-htp.html
Commentgreat site
CommentI was talking with my sister who unfortunately suffers from the same problem as I do and she told me that her doctor told her about an injection that will kill the nerves in the painful area and permanently numb that area. This sounds pretty interesting to me but I am unable to find any information on it. Has anyone heard of these injections?
CommentTo Katie: The only injection that comes close to what you are suggesting would be Botox and that lasts for weeks or months. I can't think of anything permanent and even with Botox there are risks involved. Nerves not only relay pain, they also control muscles and if Botox or any other nerve deadening medication is injected into the wrong area you could end up with very disturbing side effects. Do some research into the down side of such procedures before having them done. Best of luck.
CommentMy acupuncturist was featured on the news for NAET's. If anyone is interested in helping themselves through this method please contact me. She has healed me, I know many others can be helped as well.
CommentAlso, I can email the clip featured on TV on NAET's. Take care.
CommentHello everybody, I just came back to visit the guestbook after a long time.... I just want to say how sorry I am to all of you suffering out there. I suffered a lot for over 10 years myself (vulvodynia/vestibulitis, cause unknown) and tried a bunch of things... I used to see Dr. Jessica Thomason in Milwaukee (a vulvar disease specialist who I heard has retired). About 3 years ago, finally fed up with my disintegrating and pain-filled life, I finally had the dreaded surgery (not in America, I don't live there anymore). I know that a lot of people writing in this guestbook absolutely detest the idea of this surgery, but for me it was truly one of the very best decisions of my life and I wish I hadn't waited so long to have it. The pain and all discomfort is TOTALLY GONE. I had one short mini-flare up a few months after the surgery when I used a soap I knew I probably shouldn't use, but that was it. The surgery was very short, not too much tissue was removed (it certainly was NOT like an "amputation") and I look totally normal "down there." Sex is great now and doesn't hurt. So, I thought that maybe my story would help some people considering surgery. Obviously, it is not for everyone and there is no guarantee of sucess, but I think it does benefit some people.
CommentHello, I have been suffering with vulvar pain for over 5 years now. I am looking for a vulvar specialist in the nyc area that possibly takes GHI insurance or even someone that offers a payment plan or low fees. I have been finding no one that can help me because everyone that specializes in this disorders charges hundreds of dollars. I am young and do not have the finances to afford this. Please let me know anything helpful. Thank you.
CommentTo Erica: Unfortunately cashing in on human suffering is also a specialty of the medical profesion. The expert my wife saw in CT several years ago charged hundreds and offered next to nothing. Fact is just about any gyno can do standard tests for STD's, yeast and UTI's prescribe the same medicines as the experts including antidepressants and pain meds. I'm not trying to be negative or upset you with my opinions, I want you to have a clear understanding that this is a business for these "experts". Be your own advocate and try to ask some questions before going to a new gyno, such as "does the doctor treat patients with Vulvodynia"? I honestly do not believe the experts offer any expertise, cures or treatments beyond what a good and caring doctor does. Avoid the OBGYN's who are in the baby business, they don't have time for anything else. Best of luck.
CommentOn this site we have placed tens pages the helpful information. http://www.freewebs.com/freesexvideos/
CommentI am a 46 year old living with VVS since CHILDHOOD!!! My earliest recollection was not being able to insert a tampon when I first menstruated. I was not officially diagnosed until the birth of my second child in 1997. First, a diagnosis of Human Papillomavirus was made. My physician at the time tried several injections of Alpha Inteferon which were a HUGE SUCCESS!!!! I was actually able to have intercourse nearly 80% pain free. My dilemma is that now we moved from New Jersey to Chicago and I still (4years now) cannot find any doctors who will use interferon. I am now suffering the terrible, endless burning and can no longer have intercourse. Could anyone in the vulvodynia/vestibulitis community recommend anything? Thanks for listening!!! Jeanne
CommentTo Jeanne: Have you tried bringing copies of your medical records showing treatment with Interferon to any of the doctors who refused you? I did a search on the Internet on Interferon and if it is the same medication they referred to it seems to be used in the treatment of Multiple Sclerosis. If that's the same medication, could you approach a doctor who uses it to treat that illness and present your situation? I'm guessing a Neurologist would be your best bet. Hope some of these ideas will be of help and if you've already tried them, sorry. Best of luck and please let us know how things progress.
CommentDoes anyonelse have an overgrowth of the good bacteria? Lactobicillis (spelling?) After months of suffering from a discharge like yeast right before my period...and getting relief during my period..my dr found imy lactobicilli is overgrowing. Im treating with doxy. I was taking probiotics, a lot of them to ward off yeast. anyonelse have this?
CommentHello everyone! Hope you all are finding some kind of relief. I have a question. How many out there ride a bike? I started feeling a bit better so I thought I'd try to ride after 5 years of not. I found some bike seats that are a bit more softer so there's not the same amount of pressure down there. Well it seemed to have gone fine. I really enjoyed myself. I found I really missed the riding. My butt actually hurt more than my vaginal area. Then after a few hours my butt stopped and the vaginal area began to hurt. Luckily, that stopped as well after a few hours. Anyway, just trying to see if any of you ride and if you have problems or have found ways to not have problems. Thanks!
CommentHey everyone. I contributed a few months ago, and wanted to give an update/ask for advice. I was diagnosed with vulvodynia in 2003 (after having suffered for a year and a half with no answers). Shortly after I started taking 50mg of Elavil, I went into a complete remission. I had two and a half pain free years, then I began experiencing pain in other quadrants of my body. After a year of no answers (again), I was diagnosed with fibromyalgia. About two months ago, I went on a long bike ride (the first time I dared to in years) and immediately had a flare-up of my vulvodynia. I found out I also had a yeast infection, so now I'm on six months of diflucan to suppress that. However, my current vaginal pain feels less like an uncomfortable yeast infection and more like someone rammed a hot poker into it and stretched the muscles apart with a medieval torture device. It's one thing not to have sex, but when you can't even sit down... anyway, I have a very understanding doctor, and he just prescribed Lyrica to me. I've only been taking it for a day, so I can't give a full report, but it seems to be helping a bit. I'm also taking 75 mg of Elavil and various other muscle relaxers and painkillers. I can handle the fibromyalgia pain, but the vulvodynia is almost too much to handle. I'm moving to California soon, and I have an appointment with a pelvic rehab specialist. Does anyone have a success story regarding physical therapy and/or Lyrica? I'll report back regarding the physical therapy. I hate the idea of masking the pain with drugs, but I'd be willing to try anything at this point.
CommentI have a stationary bike that's semi recumbent and I can't ride it b/c of the pain it causes. Alissa, what part of Ca. are you moving to? I'm sorry you've been suffering. My Vulvodynia hasn't been too bad lately. I just apply Estrace cream topically 2-3 times a day and use Emu Oil for dryness. I didn't have luck with Elavil or Lyrica, but everybody is different. I hope the Lyrica will work great for you. Good luck to you.
CommentDear Allissa, Bicycles are EVIL!!!!!.(.if you have V V.) I, too, had a 5 yr. remission w/ elavil. I felt great! Pumped up the old tires and went for a short ride around the block. I knew immediately it was a mistake. Two yrs. later, neurontin, more elavil, internet vitamins, dr.s appointments...blah..blah..blah..I am in and out of severe pain. PT helped me once...give it a try. If it can get rid of symptoms for weeks or months, it's worth it. That buys you time finding a final cure. Stay off bikes until you know for sure this beast has breathed its last breath. If you are moving to the Bay area, there is someone there named Dr. Weiss that specializes in PT for V V. (I think that's his name ...I'll check)
CommentAlissa, I have had great experiences with physical therapy, and I hope you will too. My PT consists of myofacial massage and trigger point therapy - no strengthening until the very end. If you find a PT who tries to get you to do that, then get another PT. Also, make sure your PT has treated many people with vulvodynia, not just 1 or 2. Also, does what they say about the condition make sense of with what you have experienced? Good luck! Sharon
CommentOk ladies. I have ONE question. Has Physical therapy...reduced your symptoms, or "cured" them. I love reading success stories, but they are only about improved symptoms, not being symptom free from benefits of PT Please help me in this decision with an answer Thank you
CommentI am 20 years old and have been diagnosed with Vulvodynia and a slanted Uterus for 3 years now. I have been able to keep the pain at bay with calcium citrate pills (they really work!), but I fear with the combination of my conditions, I will never be able to have non painful sex, let alone enjoyable sex. This fear has been increasing over the years. Has any one found anything that can help?
CommentI think the key to avoiding pain is where you sit on your pelvis and what your legs are doing. I got rid of my bike because it hurt too much, but am a professional horse trainer and had no pain while riding, even before my vaginal surgery for my VV. On a horse, you don't sit on your vagina, and your legs are farther apart and not moving much. It also strengthens your pelvic muscles. So, ladies, if you want some fun exercise that doesn't hurt, borrow a horse. :)
CommentCalcium citrate protocol. How much do people take? With or how much time before meals? Please explain why this helps - how in the digestive tract it helps. I eat 6 times a day and low oxalate diet - isn't this too much calcium? If I still get burning does that mean I absorbed the calcium and aren't I getting too much then? If a hormone problem/may be, how am I supposed to be healthy without eating oxalate foods (nuts, seeds, whole grains, dark leafy vegs and other healthy foods?). I also have IBS and IC so between all 3 diets I have NOTHING left to eat but white rice, green peas, chicken and eggs. My body has fallen apart nutritionally - been deficient in magnesium / I now supplement, but also - never know when to take THAT either since it ENHANCES calcium absorption yes? So I wouldn't want to take it with the calcium? I'm very confused. My first post. There is so much to read here and no way to "search'. Its awful.
CommentKristen: You mentioned about having surgery in your positing when talking about bikes and horseback riding. Did the surgery take away your pain? I have considered it, even if there is initially a lot of pain. In the end it might be worth it. Please let me know about the surgery.
CommentThanks to everyone who replied. I just had my first physical therapy appointment today, and it was really great. I'm in San Francisco, in case anyone else is in the area (and the therapist's name is Stephanie Prendergast at the Pelvic Rehab Center). She was super nice and understanding, but very professional too. She massaged the connective tissues through my upper thighs, legs, stomach, etc. I couldn't believe how tight it all was... that there was so much badness concentrated in those areas! I feel better already. I'm going to see her once a week, and she said I would definitely improve quickly. I'm not sure whether it will be permanent or if I'll need maintenance therapy; I'll ask her next time. Regardless of whether it's permanent or not, it's the first thing to make me feel better in months... it gave me hope, an emotion I've been lacking of late. I'm still taking the Lyrica, but it's only been five days (apparently it takes a week or two to reach full effectiveness).
CommentI had laser surgery for dysplasia of the vulva on Dec 5, 2006. I have yet to heal. I have been in agony from the very first with only minimal healing. Morphine was given to me but did not even begin to alleviate the pain, it only made me sick. It's been a total nightmare. I wish I would have had more information but I was scared after hearing the word cancer associated with my genital area. I've left the doctor who did the laser as I didn't feel confident in her care. I went to two other doctor's who had laser experience and one of them told me I had at least 6 weeks more to go before I'd be healed. That was back in March. I live with pain everyday. I went to yet another doctor who couldn't do anything for me but did hand me off to his nurse practicener. She also is at a loss to know what to do to get this area to heal. She said my age (67), being post menophausal, overweight, and have thinner tissues in that area has been the reason I haven't healed. I don't know if this is true or if the original doctor has done something that wasn't correct. These past 10 months have been depressing. My life as I knew it has stopped. I can't even go to church becasue sitting is so difficult, even with a pillow. Help!! If anyone has suggestions, please let me know. Sincere Thanks
CommentTo Elizabeth: Very sorry you are suffering so badly. I have a question and a suggestion. My wife has a thinning of the skin at the six o'clock position which tears at times but nothing as serious as you have endured. I am curious if any doctor ever mentioned the use of a skin graft to the area unless that was totally impractical or unnecessary. The suggestion I wanted to throw out was to seek treatment at a wound center if there is one available to you. Unfortunately doctors and especially surgeons do not have the time needed to devote to someone such as yourself who would benefit from specialized treatment at a wound center. I wish you relief from your pain and strength to weather this difficult time.
CommentHi Elizabeth, I have a friend in the same situation. She was always being told that she has very thin skin. She is 70 years old. Her pain was unbearable. She tried everything, nothing works. Finally she went on cymbalta and at her age did not worry at all. she wanted to be relief from the pain. Yes after six months going up on the dose up to 60mg the pain disappeared and now she has her life back. I think at this point you should just see a doctor who could give you antidepressant who works that works on the pain level and to stop analzying what went wrong. The harm has been done, look for someone that can give you pain medication. There is no guarantee but most of the time they do work. Do not be afraid, they vefy seldom have mild side effects and my friend plans to take it for life especially at the age of 70, she said who cares. she has her life back. I can e-mail you personally and have her talk to you if you wish, if that this fine. Please let me know.
CommentFor those of you considering pysio therapy ~ if you do have pelvic floor dysfunction its a life saver. I started pt last november , my symptoms : clitoral pain, vaginal itching, burning with urination and pain with intercourse. I am 100% pain free now. I am starting to slow down on my pysio and will be discharge in the fall. If you have any of these symptoms it may be caused by Pelvic Floor Dysfunction (I got mine after a very bad UTI) so pls have a pelvic floor pysio check your muscles. Feel free to contact me w/ any questions.
CommentI am with Jenn: make sure you get yourself evaluated by a competent PT in pelvic floor dysfunction. After 3 and a half months of physical therapy, I feel great. I am not totally pain free, but my PT says that that will definitely happen. Alissa, I am really happy that you have found a competent PT - horray!
CommentI have been suffering from vaginal problems for the past 3 years. Believe it is caused from the onset of Menopause and overuse of antibiotics due to bladder infections/bout of Diverticulitus. Gynocologist tested for yeast/bacterial infections. Also took biopsy for Licheon. All came out negative but still had burning and some itching. Tried creams for hormones, didnt work. Cut out all soap, creams, use All free detergent and still had problems. Doctor suggested the Estring. After 2 weeks, a lot of improvement. No need for lubrication during intercourse (used Astroglide which Dr said shouldnt be causing problems?). Also found that Calamine lotion on burn/stinging helped a lot instead of Benedryl. Not a single Dr recommended use of calamine. Also found Aveeno with menthol to be very soothing when skin is dry. Doctors wanted to use hydrocortison or low dose steriod which is not good due to thinnning of skin. Problem has seemed to go away. Can even go swimming in pools now without iriitation after. May even start wearing underwear (which I couldnt for a long time). Good luck....
CommentHi, What is Estring??? also has anybody ever tried one of those special bicycle seats with the long holes in the middle.My doctor has suggested that, and I know alot of guys have those seats cause they have pressure down there and can become impotent. I am not that far from Asheville,N.C. and they have a bicycle store up there that evidently measures the pressure and can tell u what seat would be good for you, I think it is Liberty Bicycles.Also I am currently on Neurotinin and up to 3200mg, have some relief but still feel prickly down there and it is still uncomfortable to sit, when I stand it is not bad. Does anyone know of a good Physical Therapist either in Hickory or Asheville, North Carolina, I am trying to get one that will take United Healthcare, I am fighting them regarding my specialist in Charlotte who they will not pay. I seem to see alot of people that get relief with PT, and I think that may be part of my problem, I have written here b4, I am 58 and not yet thru menopause, I am using Estrace 3x a wk and Replens for lube. Still can't even think about sex, hoping some day to get some relief. Has anybody tried Lyrica, does that make you sleepy and gain weight cause that is what happend with Elavil although that did work somewhat. Thanks for any advice guys, I wish there was some kind of breakthrough,sometimes I think I should go to a Naturopath. Take care
CommentTo: vanessa.yvonne@googlemail.com- I had a vestibulectomy in Sept. 06 with Dr. Slocumb at the University of Colorado Hospital. He was trying to retire at the time and may have but there were a few docs-in-training when I was there. I specifically urged one of them to take Dr. Slocumb's place...I told her that we NEED her! Anyway, if I were writing this about 3 weeks ago I would have told you that the vestibulectomy was about a 90% success but in the past two weeks I am having a flare-up. I am praying that it will go away. I read another woman's posting that this happen to her after using a "bad" soap so I will be positive and think that it will go away. I can say that before this, I was almost completely pain free during sex with no burning or stinging and would have slight pain for the next day or so. Mainly because my vagina "splits" a bit at the 6 o'clock position and I get a fissure there. My current OBGYN said to put neosporin on that. Compared how my sex life has been for the past 7 years, this is a wonderful thing. I tried just about everything prior to surgery....and had the same experience as most, docs didn't know what was going on and treatments that didn't help or made the burning and itching even worse. Everyone is different and I think that you should try the other things first to see if any of them will work. The only thing that slightly worked for me was steroid shots directly into my labia every couple of months but it was only temporary relief. The antidepressant that I tried was Amitriptyline, which I tried for a year with no relief. The side effect of being "out of it" all of the time really was horrible for me. The doc lowered my dosage to 25 mg and then I would cut that pill in half and still felt drugged. Anyway, I also tried the low oxalate diet, the calcium citrate (I still take 1200 mg./day- not that I see relief from it but I feel like it can't hurt), multiple treatments for yeast infections, estrace, steroid creams, homeopathic therapies, had a biopsy, was treated for HPV (even though I didn't have HPV). different types of steriod shots and lastly, biofeedback. The biofeedback really helped me relax and not be so "tight" when having sex. Sex was so painful for so long that my body responded by tightening all of my pelvic muscles. The biofeedback was part of my therapy involved with getting the surgery. I wish you the best of luck. My advice to you and everyone else would be to try other less invasive options first. See what may work for you. I've read about people having success with so many different treatments that didn't work for others or for me but every body is different. I think this website is a great idea for sharing what has worked and hasn't and it is key to find a good doctor who is educated in this condition (which has so many names starting with "v"!) and who is willing to try the different treatments also. At least with a good doctor, you feel like you have someone on your side. I could have cried when my newest gynecologist (I recently moved) told me that she knew all about my condition....it was such a relief. For 7 years it was incredibly frustrating. My advice to everyone is to keep trying....new doctors and new treatments.
CommentAnyone try Desipramine for neuropathic pain/vulvodynia? I am only on my third night of it. I can't believe how way, way less sedating it is than Elavil. Even when I took 2.5mg of Elavil I would be out in five minutes and even the next day felt extremely tired. I was wondering if anyone has tried this and if they got pain relief and please tell me what dosage you are on. I am just starting out on 10mg of it. Thank you.
CommentDiane: The bike seat you mentioned did nothing for me - I even tried raising my handle bars ridiculously high so I could sit more upright, but that didn't work either. And yes, see a naturopath and get off the drugs. Vanessa: I also had my surgery with Dr. Slocumb, in January of this year. He's still trying to retire, still hasn't found a replacement, but he's excellent. I'm also having a flare-up now, but will be seeing Dr. Slocumb next week to get some answers.
CommentI can't help but think that the women who are complaining about the fishers they are experiences are either defienct in vitamin B6 (or other B vitamins) or allergic to it. Has anyone with that symptom been tested for a defiency or allergy?
CommentI was wondering if using a vibrator to mastrabate can cause these problems with vulvadynia......I have not seen anyone talk about a possible link....
CommentTo Elaine: I've been posting here for years and can't remember any discussion linking the two. I have read elsewhere that vibrators can cause nerve damage but whether or not that damage leads to pain or actually desensitization is another question. Since Vulvodynia covers many different symptoms the link you are suggesting would be limited to a specific group of sufferers, but any connection into a cause is a step in the right direction. I've read of recurrent yeast infections, antibiotics, antifungals, The Pill and many other things possibly setting the cycle of pain into motion.
Commenti love ur site
CommentAccording to my physical therapist, this is an awesome clinic in New York City that treats pelvic floor pain. Their explanation about pelvic pain and doctor's ignorance to it is right on! http://www.beyondbasicsphysicaltherapy.com/pfd.shtml
CommentThanks to the person who suggested vitamin B6/B for the fissures. I'll try anything so I'll try it and let you know. Also, Elaine, at the time of the onset of vestibulitis for me, it had been at least six months before that I had used a vibrator. I too try and think what it was that I was doing in my life at that time that could have brought it on.....living in a dry climate, using a certain soap, eating a certain food, drinking wine more than beer when I chose an alcohol drink. I had what I thought were yeast infections that I now just think was the onset....perhaps we made it worse by overly treating a yeast infection that wasn't yeast. I hope that the surveys that we all fill out will lead to some answers that may link it.
CommentHi: Has anyone had a flare-up caused by strep b? If so, did the burning and itching go away after penicilin (or similar antibiotic treatment)?
CommentTired of Suffering posted on july 3 that she had a lot of white blood cells and a high PH. I too have that. For my job, I take blood tests every year. For the first year, before the onset of vv, everything was normal, then in 2000, when this really started and since then, my white blood cell count is high (I've been told every year that I must be fighting off an infection) and my PH has been higher than the normals. Does anyone else know this is happening to them? I've read about baking soda sitz baths and yeast fighting but has anyone tried immune boosters or anything specific for reducing PH and if so can you post what has worked or not worked for you? Thanks!
CommentI have been reading this site for a while but have never posted any comments. :Tired of Suffering" asked about pH. My problems with vestibulitis and vulvodynia include an increased pH. I discovered two things that help acidify the vagina: vaginal vitamin C tablets (avaialable throught the online Today Store or at drugstore.com) and vaginal boric acid suppositories. For me, the increased pH casues terrific burning at the vestibule. I used baking soda sitz baths for a brief period of time, but they did not help long term with this particular problem. The acidifying agents help me ALOT. The vitamin C tablets are pretty expensive; the boric acid suppositories are not, and I make my own at home using powdered boric acid from the pharmacy and gelatin capsules from the health food store. My only complaint is that the boric acid increases vaginal secretions--I always carry dry panties with me so I can change during the work day (I don't use pantyliners). Elaine Shapiro asked about vibrators. I have no experience, but my PT suggested getting one to use on the pelvic floor muscles. She said to find one that is specifically designed for Gspot stimulation, because the angled head makes it easier to massge the muscles. Whether the vibrator could cause pain I don't know, but it seems that it might, depending upon what causes your symptoms--nerve problems might be made worse while yeast problems might not be. I have been working diligently on this problem since December and have found some things helpful. Will share more when I have another few minutes.
CommentI have been taking Citrical pills for the past 4 months and my every day pain has gone away. I hope this information can help someone else.
CommentDesipramine anyone? has this worked for you? and what dosage are you on??
CommentHello everyone, I am desperate to talk to someone who knows what its like to be going through the pain of vulvodynia. I have always had problems in that area since I can remember. I had a smear test at 16 and it was the most painful thing. I think a lot triggered it off aswell as that. I have grown up with something just not being right. I'm 22 now and have been (finally) diagnosed with vestibulydnia. After years of seeing doctors and gynacologists who told me there was no infection and nothing 'urgent' at least I have a diagnosis. I think the hardest thing for me and something I've just realised that I do - is cutting myself off from people particularly of my age as its like they pose some kind of threat. They really don't and can't understand how I feel. And I slightly resent my female friends because they don't have to and never have had to deal with this problem which is a terrible thing to admit. I have never had sex without it being hurendously painful. And they can't understand how that feels. And people ask if you have a boyfriend and who you like etc. and I can't. I can't like anyone and I don't want to. I used to put up with the pain of sex for a long time with any boyfriends I had (which wouldn't last long anyway - thank God!) because I would keep going to the Doctor and they would tell me nothing was wrong. So I believed them. Now I will never do that and urge you not to. I have tried a whole host of things to ease the discomfort. Something that has helped the dryness has been calendula oil - but its a bit messy. I want to try biofeed back now, whilst doing the low oxalate diet and taking lots of supplements to promote healty skin growth. I also read somewhere about the relationship between back problems and VBD. I think if I can strengthen and work on the problems with my back too it may improve things. I think the fact that I feel alone in dealing with this everday - and obsessing and thinking about it all the time is making it worse. I think that a positive attitude would show that it isn't the worst thing to happen and one day, I will control it and I'll start to feel better. If anyone can identify with these feelings please let me know. I wonder if women with VD know what I mean.
CommentHi Hannah, yes, we all understand how awful it is to have such pain down there. You're not alone. One thing to remember, the longer you have sex before being treated, the more your brain and your body learn to unconsciously tense up and dread sex, which only makes it worse. Change your focus to getting help from the right sources. Sex can wait, and true friends will not judge you for that. Keep reading previous postings on this site, find women with similar symptoms, and try their solutions.
CommentHi, my name is Colette. I am 22 years old, and have been suffering with Vulvodynia for about a year and a half. It began about 2 years after the removal of my ovary due to a very large ovarian cyst. I had the same partner for over a year at that time. It was much like what everyone else is describing. random pain. I had always thought it was from yeast infections. The birth control I am required to take for the prevention of further ovarian cysts also causes terrible yeast infections. I had been to my typical gyno who claimed the only chance I had was to get shots every couple months to treat the inflammation. I was prescribed Lidocaine, as maybe I'm an adult, but I'm certainly not fond of the idea of a needle in an area that is already KILLING me. I found a blessing in Philadelphia, who's name is Dr. Kellogg-Spadt. She has been researching women's gynocological problems and sexual health for many years. She's friendly and very helpful. She provided me with a very hypoallergenic cream. Since this cream, Soma at night, and Diflucan, which has prevented the yeast infections, but not caused any problems with the effects of the Birth control, I have successfully been able to have pain free sex with my boyfriend. I thank God because I know how difficult it must have been for him to be patient. The symptoms are not gone, however. I do sometimes experience what feels like inflammation after the intercourse. I do have random pains throughout the day every now and then, but it has all been bearable. Most of the inflammation has subsided with daily use of the cream. I want to recommend this doctor (Kellogg-Spadt), and the use of this cream, to anyone out there who can get it. It is not extremely expensive, and it could change your life. I was at a point where I was losing hope for myself and any future for my reproductive system. Now I am actually going somewhere. It's funny to think that something so simple could change everything.
CommentHi Collette: I'm glad to hear you're doing better. Can you tell us what the name of the cream is that was prescribed for you? Thanks.
CommentThanks Kristin. This guest book is brilliant. Its so refreshing to have some understanding for a change! And reading the comments makes me realise that it is possible to control these symptoms and get some normality back.
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CommentHannah, I recommend doing some physical therapy before you try biofeedback. Physical therapy, through myofacial release and trigger point work, can help relax your muscles before strengthening them. If you need a referral, I can help you find someone specializng in pelvic floor rehab.
CommentHi everyone, its me again... On the 5th of September i decided to have the surgery, i didnt have the vestibulectomy though... After going to a new gynie, he did all these tests on me and said he wants to do a fentons procedure on me as well as moving my tender spot out of the way so that when i have intercourse that spot will not be touched! Its been 2 and a half weeks and so far so good, it was not painful at all. My problem was only painful to the touch and to be honest i havent exactly tried to feel if the pain is still there but when i go for my check up on the 2nd of october, my doctor will do the examination to see if the pain has gone... Im quite confident thats its gone and i havent felt this happy in a long time... I will let you all know how im doing
CommentFor Sharon. Thanks Sharon. A lot of the problem I think is impounded by the way my muscles tense up when there is pain. I think you make a good point that I should try to relax them before I strengthen them. If you know anyone in the United Kingdom that would be wonderfull!! Thank you for your comment. I am going to Pilates tomorrow so maybe that is a start.
Commenti just had a quick question, i am going to be using once a day pressaries to help treat my cytolytic vaginosis problem ive had for two years. in it, is boric acid.... anyone ever used this vaginally? what is your opinion or experience on it? thank you!
CommentI have vulvodynia and would like to talk with others who have it too.I'd like to know how to get rid of it as quickly as possible.This is a very difficult thing to treat.Any help would be great.
CommentTo Tired of Suffering and Ann, who posted about the boric acid suppositories. I logged on today to ask Ann about this and then saw that Tired of Suffering was also asking about the boric acid. Ann, how often do you use the suppositories? Every day? I'm also wondering if you have symptoms of a discharge that is irritating (not from the boric acid, I mean just normally, before treating it). I am asking because when I do not have the discharge (it is just white, not smelly), my vagina is not irritated but recently during my "flare up", I am having this discharge and my vagina and vestibule are irritated. This is why I think I will try the boric acid suppositories. I think the discharge must be high in PH and causing the irritation. Please let me know how often you are using the suppositories. I've read of others doing this too by the way...for anyone else who is reading this and wondering about it. Thanks!
CommentYes, you use the boric acid capsules daily. If you put one in at night, it goes to work while you're laying down, then you use a pad during the day to catch the runoff. Usually a one-week course will cure a yeast infection. Hope that works for you!
CommentI've been suffering from VV for about 4 years now and really felt like I was alone for a lot of that time. Everything started after a severe throat infection when I was prescribed a lot of antibiotics. After that I thought I had recurrent yeast infections and urine infections so the doctors kept giving me antibiotics and anti-fungal treatments. Nothing seemed to work. My boyfriend thought I was avoiding sex on purpose and the pressure became unbearable. By the time I was eventually diagnosed my sex drive had vanished, my relationship was in tatters and I was a nervous wreck. Thankfully my GP had faith in me and realised that my symptoms weren't as "simple" as a yeast infection. I began seeing a sex therapist who talked me through vulval pain and the many causes. A lot of what she said made sense in that she spoke of pain being an interpretation of a sensation by the brain so that, theoretically, the brain could be retrained to ignore such sensations. After almost 2 years of being single and not having sex all of my symptoms disappeared (pretty much). I recently started seeing a new partner and things were going really well...everything was functioning normally and for once I was able to have sex...pain free! That was all until last week when suddenly the symptoms that I'd been free from for 2 years reared their ugly head again. I am distraught. I honestly feel that my symptoms are very much emotionally related and stress related but I don't think I can watch another relationship potentially suffer because of this condition. It makes you feel so useless and abnormal, especially in a society that is obssessed with sex. All I want is to be able to have sex with my boyfriend without worrying about the pain I will suffer the next day. All I want is to be able to go to work without being in pain. I know there's no easy solution to this and I know that a lot of people live with a lot worse conditions than VV but all I desperately want is to be able to consider a life where I can have sex normally - sometimes you wonder how something so seemingly simple can have such an effect on your life!
CommentHello to All, I'm here to tell you that my homeopath has reduced for last time the dosage of the homeopathic medicines. Now I have to continue for few years, but I'm almost cured. No pain at all, the sex is wonderfully pleasant as before and my life has come back to me! Good luck to all of you!
CommentTo Chiara: So nice to hear such good news. Best of luck in the future and say a prayer that all forms of Vulvodynia will be treatable someday.
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CommentCan someone tell me why Calcium helps with this? Like what exactly does it do to help?
CommentHey ladies, so glad I found this board. I have Vulvodynia of the Clitoris which is called Clitorodynia. I am about to try Elavil for treatment, than plan to try Neurontin after that if this doesn't work. I plan to get in touch with a pelvic floor rehab and start that after meeting with the specialist. I do not plan to let this beat me. I am in a lot of pain and been in tears for days now. I notice when I am more stressed over this the more I hurt. I know stress did not cause this and I know exactly what did, but stress is keeping it going. What caused this was Summer's Eve Feminine wash. I took a lot of showers over the summer. Almost twice a day and i washed and washed my genital area. Finally when I would take a shower it started to hurt when I used any soap on my vulva area. Now I cannot even touch the are. My OBGYN says my vagina looks normal, but I have obviously irritated it badly from the overwashing. She thinks I will likely get better if I leave my vulva alone. I'd like to know how long this will take. It is now been a month and hurts like hell! I plan to be proactive and not let this get me. I look forward to chatting with all of you. I'm new to this but I am not going to allow this to go on for years like some of the stories I have read. I will beat this and and I hope all of you find the relief you deserve as well.
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CommentHi Holly I had the exact same thing as you this time last year. It came on after a very bad urinary tract infection. After 6 doctors misdianosing me i finally found one that sent me to pelvic floor pysiotherapy. My clitoral pain was gone within 2 months of therapy :) and never came back. Feel free to email me with any questions. Jxoxo
CommentIs anyone else missing guestbook # 26? Is it just me?
CommentHi Sara: I'm missing the 26th guestbook too.
CommentI think Guestbook 25 ends on June 12, 2007, and Guestbook 27 begins with June 13, 2007? Does this look correct?
CommentI read them all without any problem, the 26th ends on June 12, 2007, and the 27th begins with June 13, 2007. To me all looks correct! You might have problems with the server?
CommentHi there i have recently been diagnosed with volvodynia by my gynae. having read the emails of other women i am so glad that i am not going through this alone. i am in virtual constant pain at the entrance to my vagina. my labia are sore and nothing i use creams etc are working. after a laparoscopy which gave me the all clear with regards to other internal problems i may have had i find that i am am worse than ever. it started about 1.5 years ago with what i thought to be a yeast infection but nothing i took cured me of the soreness and excess discharge. i am now taking amitriptylene 10mg twice a day to deaden the nerves which does somewhat ease it. i havent been able to have sex since it all started as the pain is so severe; thankfuly i have a kind, patient husband but i have needs too which is stressing me out a little. also i have started to tear in between my inner and outer labia and also around my anus which is also causing me sress and waking me up at night. it feels to me like everything is inflammed and full of pressure which would posibly account for the tears in my skin in that region. please, please,please what can you say to help me. i am in the process of getting a second opinion as i dont feel my gynea knows what to do for me. as with all your women on this site we are desperate! how on earth did this all start? ive always had a healthy sex life but we are always clean and arent into putting toys were they shouldnt go! Now i'm laughing!! thanks for listening to my ranting on. Gina
CommentTo Gina: Very sorry you are going through this difficult and hope you don't mind a man responding. My wife started getting tears several years ago and although she still gets a recurrent tear at the six o'clock position we have not noticed the skin tears she used to get in the folds of the labia or in between the labia and thighs. She used many cremes including Estrogen, but none of them strengthened the skin. Vitamin E oil was applied to no avail. Possibly yeast overgrowth caused inflammation over the years and damaged the skin? This also began seveal months after stopping The Pill. I would strongly recommend not using any soaps, fragrance in the area or strong detergents on your garments. Do not take bathes, shower instead. If you are going to be treated for yeast or a suspected bacterial infection please encourage your husband to be treated as well. I did not understand the necessity for this years ago, but yeast and bacteria are passed back and forth so it makes sense. Healthy teeth and gums are also very important because of the high concentration of germs and bacteria which can be spread during intimate contact. Best of luck to you and your husband.
CommentIn March I thought I had a yeast infection. I have had several in my lifetime so I thought this was the problem. I saw the nurse practitioner at my GYN's office to confirm. She gave me the usual pills and creams. I used them as directed but the symptoms returned within 3 days of completing the treatment. I had severe itching beginning at the 12:00 position and burning from 3:00 to 9:00. The itch or tingling, prickling feeling started deep inside of the tissue mostly at night and spread throughout the entire area. I thought the burning was from scratching during my sleep. I returned to the doctor and she said I now had a bacterial infection, BV she called it. More pills and creams with the same result. She told me not to use any soap in the area. I changed my tissue brand, panties, laundry soap and fabric softener but nothing seemed to help. After a rather embarrasing appointment where I had to view my "pelvic floor" in a mirror and point out where all the symptoms were coming from all the while the NP and her assistant accused me of not knowing my body, using soap when told not to and basically placing the blame on me, I found another doctor. She has prescribed a steroid ointment that has helped me considerably. But, I still have symptoms brought on by sexual activity and even my clothing coming in contact with the area. My question is, do I have vulvodynia? Neither doctor mentioned the name vulvodynia. I have ordered the doctors book and will continue to read the entries here, but I an looking for answers. Am I a victim? I have even thought I was allergic to my husband's semen. I found this site when searching for documentation of this kind of allergic reaaction. After sex, I am simply on fire and can't wait to get to the shower. So, what do you ladies and gentlemen think?
CommentTo Anoymous(sp): I've been posting here for years and if your symptoms do not respond to treatment, then I think they fit the description of Vulvodynia. Nothing to be embarassed about, you are a sufferer. There is true allergic reaction to semen and there is also a different problem some women have with semen. There is a delicate balance of ph that keeps the vagina slightly acidic preventing yeast from overgrowing, some women have this balance upset with the introduction of semen which acts to dilute the acidity. You should be able to find this information on the Internet or have your gyn confirm this in person. One way to eliminate this element of irritation and pain would be to have your husband either use a condom or not ejaculate inside you. My wife used to have the exact same thing happen as you described, she said she felt as if she was burning inside when I ejaculated, and she appeared to be red and raw. There may still be a problem with yeast and or bacteria that is not visible but causing irritation. You need to see a gyn who understands Vulvodynia and treats you with patience and respect. Completely avoiding soaps and other irritants can only help soothe the skin that is inflammed. I think the worst thing you can do is continue to have sex when you are in pain or anticipating pain, talk to your husband and take a break. Learn more and get answers. Read past guestbooks starting with Thirteen. You will get a crash course on the symptoms and treatments of Vulvodynia in addition to the personal stories of the women this mystery illness affects. Best of luck.
CommentHi all, I stumbled across this site in my desperate quest for some relief. I've had what I affectionately refer to as "flaming fanny" since about May which I think was brought on by shower gel. I am a gym devotee and used to spin (lovely bike seat...) up to 5 times a week but I've had to knock this on the head due to the FF. I've spent a King's ransom on Thrush treatments at Boots and have been a regular visitor at the dr's where I've had countless smear tests (which all come back all clear). But still it burns...Having been to the GP about 5-6 times I was refered to see a gyn (privately), who has prescribed me 1 x 150 Fluconozole tablet along with some steroid cream. The Drs's have been utterly crap and I feel like they are just trying to get rid of me. I've been trying the steroid cream for about the past 10 days but it doesn't seem to have any effect and from what I've read on the postings so far it doesn't sound like i should continue with it. I'm not due to go back to see the the gyn for 4 weeks and even then I'll have to do so privately (and the freezer has packed up to compound my financial misery). I don't know if I have vulvodynia but from what I have read so far I suspect I may have. Sex is painful (and always has been) as I seem to have superhero muscles down there. Why don't bloody drs help. I am distressed, constantly in tears and in constant discomfort. Can anyone offer anyone help here with advice. I'm in Northants, in the UK
CommentHello. I've never posted before, but wanted to share my story. I'm 23 and was diagnosed with VV about 2 years ago. I had surgery and it helped a little.. I'm not having random pain or what they thought were yeast infections anymore, but sex is difficult still although I haven't tried in a while due to a recent break up :) Anyways I hate that you are going through all this, but at the same time I'm thankful that others know what this chronic illness truly is. I hope doctors and the media get a hold of this and tell others about it so more research can be done and we can get healed!
CommentWhat is this disease? From reading the posts, it sounds like it's a muscle thing but the irratation, burning and itching seems to indicate something nerve related. I guess I am confused by the symptoms. My GYN tested me for many types of yeast and bacteria, even those that are drug resistant. They were all negative. She told me that it may take up to 6 months of using a steroid ointment to get things back to normal. She said that once the vulvar tissues are upset, it takes a long time to restore them to a normal state. There are some really good suggestions in this post which I will try, i.e. condoms to avoid upseting the ph balance.
CommentVulvodynia: In the years since my wife and I heard the term "Vulvodynia" and I began reading and posting here, it is my understanding that Vulvodynia is a term used to describe any single or combination of symptoms which involve pain either with or without intercourse, burning, itching, redness, tearing of the vulva in addition to but not limited to recurrent yeast, bacterial infections and bladder infections, all of which do not respond to well to typical treatments. Most sufferers will be treated unsucessfully with a wide array of medicines including steroid and hormone cremes, anti itch, anti fungal, anti yeast and antibiotics. Surgery is also used to relieve pain, as well as physical therapy, injections, and natural remedies. I think the common element is not knowing exactly what causes these symptoms to begin and not having a specific treatment or cure to relieve them. Antidepressants such as Elivil and Neurontin are prescribed to "calm" the nerves of the inflammed tissue.
CommentDoes anyone know of a good natropathic Dr. or gyno specifically in the Fort Lauderdale, FL area for Vulvodynia? I was diagnosed in 2003, then it went away for a few years, then it came back again in 2005 and has been awful and non-stop since. I just found out today that I have low vitamin D levels and my gyno is sending me to a endocronologist though I'm not too sure of the link between the two, does anyone know from experience how this connection can help to the solve the problem? Thank you!
CommentTo Risa: Vitamin D has been brought up in the last several guestbooks and I think Dr. Peacock in NY uses this in her treatment of Vulvodynia sufferers. Don't know the connection with endocrinology, but my wife saw an Endocrinologist several years ago. He took blood to check hormone levels and also did a swab of the vulva tissue to check for the levels of estrogen in the tissue of that area. Generally speaking he said if she was having somewhat normal periods, then her hormone activity was probably within normal range. Results came back that levels were within normal range but on the lower end. Some people believe stress can deplete your body of the ability to produce healthy levels of hormones and low estrogen for example will have a negative impact on your vulva, vagina, etc. Getting back to the Vitamin D for a moment, this vitamin is getting a lot of attention recently. Experts believe most of us are somewhat deficient, especially those of us in the North East. Be careful if you decide to supplement, there are blood tests to determine exactly what you need to take. The best form of this vitamin is D3 (Cholecaliferol) and it's available for temporary use in as high as 50,000 IU, but most people take between 1000 and 3000IU a day. I urge you not to self medicate. Good luck.
CommentHi everyone: I received my Nov. issue of Prevention Magazine today in the mail and there's an article entitled "Help for Intimate Pain". They discuss: Endometriosis, IC, Pelvic Floor Tension Myalgia, Pelvic Congestion Syndrome and Vulvodynia. I'm glad that more articles are coming out on female pelvic pain, but there still aren't enough Drs. who know about Vulvodynia or these other disorders and I'm sick of trying to find one who does. I always know more than any Dr. I've seen. My Urologist had never heard of Vulvodynia before I told him about it. It think it's absolutely ridiculous and I'd like to have a choice of Drs. to see instead of having to see the only one around who has a clue.
CommentTo private: Regarding your observations on muscles vs. nerve, I have a couple of comments. First is that tight muscles do involve nerves - when muscles become very tight, they entrap, press down on, and cause nerves to flare up. If you ever have had a charlie horse in your leg, you know very much that the nerve is acting up. Secondly, very tight muscles do cause burning and even itching and even tearing in the vulvar area. Tearing aside, I had all of these symptoms before I started to see a physical therapist. After 4 monthes of her massaging out my tight muscles, I am 99 percent pain free. Kim, my physical therapist, has helped me understand vulvodynia very well, and we have helped a lot of women find physical therapists in their neck of the woods. I'm lucky to have found her.
CommentSick to the Back Teeth: It sounds like you do have vulvodynia but maybe also vaginismus. Your doctors don't sound great - I am so sorry. So many of us have had that experience. My recommendation is to see a physio to examine your muscles. Let me know if you need help with a referral in the UK. Sharon
CommentI have been dealing with intense burning, like a sunburn, in the vaginal area for the past couple of years on and off. I went the ob/gyn and was checked for yeast and nothing out of the ordinary was found. I was told that it was probably hormone related, since I am now in menopause, was prescribed Estrace cream and that was all he had to offer. It really didn't make much difference and I could never really find a cause and effect for the problem. I had a hunch that it was some kind of a yeast infection since it did seem to be somewhat better when I used a colon cleanse product. Recently I was having some unexplained stomach problems so i bought a candida/parasite cleanse product thinking I might have picked up some weird bug. The vaginal burning came back...so I theorized that this could be related to candida (yeast) being stirred up. I started searching the web to try to find someone else that has had this problem and finally, thank God, found this site. I now know the name, and there, in the frequently asked questions section under item number 7:18 was the answer...bingo, systemic candida yeast infection in the intestinal tract is suspected in vulvodynia!! I am so relieved to know what I am dealing with, and i also have a direction to take. I have also found a very powerful probiotic online that I have ordered...the testimonies are encouraging for actually reversing and controlling the overgrowth of candida for good. Interestingly, candida is also blamed for leaky gut syndrome, which has been linked to autoimmune disorders like fibromyalgia and chronic fatigue that some many at this site are also suffering with. Our diets are loaded with refined sugars that candida feeds on, we are prescribed antibiotics without replacing the good bacteria that is killed off, we are stressed out...all factors in candida overgrowth. When candida takes over the system it wreaks havoc on the body and manifests in many different ways. MD's don't seem to be aware of this to a large degree, but I plan to inform mine at my next visit. I am pretty confident that this will help me on so many levels...sugar cravings, brain fog, stomach aches, lethargy and yes, vulvodynia! Kathy
CommentTo Kathy: Do some research on the benefits of L Glutamine, it is an amino acid. Yeast overgrowth can deplete the body of this essential nutrient and supplementing with it can improve gastrointestinal functions and other areas of the body. Check it out.
CommentFrank, Thanks, I will... k
CommentSharon, Question for Sharon if she's still around? Sharon what area are you in and who is your PT? Sorry if you posted this already, but in reading thru I couldn't find it. Thanks
CommentRebi, her name is Kimberlee Sullivan in the Austin, Texas area. Sullivan physical therapy. She knows of other PTs in other parts of the country so let me know.....also feel free to contact me off this list serve.
CommentI WAS DIAGNOSED with Vulvadynia in Arizona. I have changed my diet and it has helped me with the burning. I am still feeling a wierd pressure in my rectal area,my inner thigh hurts as well, I have had it checked but nothing organic was found. The pain I feel the most is from my bartholin gland. It is a deep pain that hurts to the point I do not want to continue. I am considering getting them removed has anyone had this surgery? Please help me.
CommentI also changed my to non perfume detergent as well. The low oc diet and the other things that the mayo clinic proveided has helped with the burning. The pressure in my rectal area and the DEEP pain in my gland area are killing me. I saw that Thomason does the surgery has anyone had the procedure done by her because of deep pain from the gland? Thanks LBH
CommentHello ladies, I had the surgery last January to remove my glands and the skin around the vulvar opening. It mostly worked - I have far less pain and am having a few remaining sore spots removed this coming January. If you have a good surgeon, I do recommend the procedure if other solutions haven't worked.
CommentHey thanks for the response and thanks to the others that have emailed me. I am going to try PT first and if that does not work I will get the surgery. Can you email me and tell me who did your surgery. Thanks for giving me hope LBH
CommentDoctors are morons. I had to share this...it is really sad but also funny and ludicrous at the same time. So many of us have been been mistreated by the medical profession and have seen just horrendous doctors but this one TAKES the cake. My physical therapist told me that she recently started a patient who had come in really really upset. When she had seen her last doctor with clitoral pain, he told her that he thought she was growing a penis. Yes, that's right..growing a penis. It took my PT a whole session to calm this woman down and tell her that was medically impossible. Just a story to let women here know that doctors have been wrong about so many things and to fight back at ridiculous and harmful treatment!
CommentThat's unbelievable. I thought "I" had been to some horrible Drs. but that one takes the cake.
Commentregarding the comment about monistat. It contains propylene gycol, which can be an allergen to some. I found out that it is in estrace cream, KY Jelly, yeast treatment creams, and the cream my dr gave me for bacterial vaginosis. Also, physicians doing exams use it. I noticed this condition worsened after exams, after infections, after sex with KY, etc etc. Avoid it. Most doctors don't seem to have a clue about this connection. My allergy clinic does.
CommentTo Judith: Propylene gycol began being discussed several guestbooks ago. Once we became aware of the problem my wife and I were shocked to see how many products use this ingredient, mostly as a preservative. The double edged sword here is that KY Jelly or vaseline hold bacteria like a petri dish making matters worse. One of the least harmful methods of resolving yeast infections has been boric acid suppositories. If you have time to read past guestbooks you would be amazed at the various products some of the ladies have used to either soothe their burning discomfort or act as a sexual lubricant. These include crisco, olive oil, Vitamin E oil and vanicream( vanishing cream, make up remover).
CommentHi ladies, I been reading along periodically for the last couple of years matching symptoms with what i experience. I am 25 and I have been suffering from vulvodynia since the summer of 2004. I'm in the military and I thought that perhaps after going back from over seas that I had picked up something from there but who knows. It started as frequent yeast infections following any sexual encounter. I start self treating myself with OTC drugs. I got one last yeast infection after a sexual encounter and the itching and burning never went away. Since then I’ve seen over 25 different doctors of all possible disciplines and no luck for pain relief. I finally went to Dr. Libby Edward a DR. from NC who specializes in VV and she told me that she didn't know what was causing my yeast infection following sex, and she didn't know what was causing the itching and burning. But she was one of the first Dr's willing to experiment with medication. We tried several meds but the most helpful thus far is Lyrica. I start taking 150mg 2 times per day and i was pain free. Eventually the med dosage wasn’t enough to alleviate the pain so I had to gradually increase it. I’m currently at 300mg 2qd and now I am pain free again. I pray everyday that the med continues to work. I’ve been taking Lyrica for 7 months now since April 07. Unfortunately the yeast infections still came with sex. If so bad now that even if I dream about sex or think about having sex I get a yeast infection. It’s crazy. I'm starting to wonder if there might be something wrong with my hormones. I'm not sure what type of Dr. to see for that type of problem or even if a sex therapist could help. I see a lot of the ladies mention using boric acid suppositories...? Is that a daily use thing or just when ever you have one?? Does anybody know where to get boric acid suppositories?? I also dropped in on some messages from ladies mentioning different surgery's but I’m not sure which ones they are. If there is anyone out there that might be able to assist me with any helpful information please email me. I would really appreciate it. Like all of you I just want to be normal again. Miss_tyrrell@yahoo.com
CommentHi ladies, I been reading along periodically for the last couple of years matching symptoms with what i experience. I am 25 and I have been suffering from vulvodynia since the summer of 2004. I'm in the military and I thought that perhaps after going back from over seas that I had picked up something from there but who knows. It started as frequent yeast infections following any sexual encounter. I start self treating myself with OTC drugs. I got one last yeast infection after a sexual encounter and the itching and burning never went away. Since then I’ve seen over 25 different doctors of all possible disciplines and no luck for pain relief. I finally went to Dr. Libby Edward a DR. from NC who specializes in VV and she told me that she didn't know what was causing my yeast infection following sex, and she didn't know what was causing the itching and burning. But she was one of the first Dr's willing to experiment with medication. We tried several meds but the most helpful thus far is Lyrica. I start taking 150mg 2 times per day and i was pain free. Eventually the med dosage wasn’t enough to alleviate the pain so I had to gradually increase it. I’m currently at 300mg 2qd and now I am pain free again. I pray everyday that the med continues to work. I’ve been taking Lyrica for 7 months now since April 07. Unfortunately the yeast infections still came with sex. If so bad now that even if I dream about sex or think about having sex I get a yeast infection. It’s crazy. I'm starting to wonder if there might be something wrong with my hormones. I'm not sure what type of Dr. to see for that type of problem or even if a sex therapist could help. I see a lot of the ladies mention using boric acid suppositories...? Is that a daily use thing or just when ever you have one?? Does anybody know where to get boric acid suppositories?? I also dropped in on some messages from ladies mentioning different surgery's but I’m not sure which ones they are. If there is anyone out there that might be able to assist me with any helpful information please email me. I would really appreciate it. Like all of you I just want to be normal again. Miss_tyrrell@yahoo.com
CommentTo Jade: You can have boric acid suppositories made up at a compounding pharmacy, or you can get the empty capsules and pharmacy grade boric acid and make them yourself. If you have the time, read through several of the last guestbooks to get specific information. My wife used them one in the morning and one in the evening for two weeks. You need to wear some kind of pad because of the leakage. At night best to use right at bedtime. Good luck.
CommentHello - I was diagnosed with vulvodynia/vestibulitis about 3 1/2 years ago (but have been suffering from it for much longer). I live in the Boston area, so am lucky to be surrounded by good doctors, but still haven't seen a lot of results. I've tried just about every option, except for surgery. Currently, I've been taking estrogen b/c my levels were low and i was very dry. I've also been visting a physical therapist, who has recommended using dilators (which I was doing pretty diligently, until recently). I did see some improvement with the physical therapy and dilators, but realistically, it's hard to find the time in the day to do dilators..and when you've been doing them for over a year with minimal results, it begins to seem futile. I haven't had sex for over 2 years with my husband and I want results. Did anyone happen to see the show Private Practice a couple of weeks ago (the not-so-good spinoff of Grey's Anatomy)? They had a woman on there who couldn't have sex and complained of the same symptoms we have all been experiencing. Well, the solution there was to give her trigger point injections (basically lidocaine shot into the vagina) and then miraculously the woman was better and able to have sex with her husband. Now, I know it's TV, but I was wondering if anyone has had success -- or no success -- with trigger point injections? I'm really getting to my wits end with this problem. I am really just so tired of dealing with this...
CommentJade, I have a friend who has the exact same trouble with sex and yeast infections and I finally found an article that explains it, and sent it to her. I'll ask her if she still has it, but basically this article explained that with this problem, women actually are reacting to an allergen in the man's semen. He is eating something or taking some medication that the woman is allergic to. IThe allergen disturbs the woman's vaginal area, causing an overgrowth of yeast to form. She takes a supplement that helps return her vaginal flora...I think it works. If you want, I'll ask her what it is. YOu might want to try a condom with sex to see if that helps. If you are already using one, you might try a different brand or get tested for an allergic reaction to condoms. Also,where do you live? I think you should be examined by a physical therapist who specializes in pelvic floor dysfunction. I can help find you one through my physical therapist.
CommentJune, I've talked about trigger point injections with my PT (because I've heard other women talk about them) and she says they are 50/50. They can have really good results, but they can also make things worse. Does you physical therapist do myofacial release/trigger point therapy?
CommentHello, I am new here. I was wondering if anyone has seen Dr. Peacocke in NYC and what your exprience with her has been. I have had a first visit with her and she made some very encouraging statements about the likelihood that I will go back to normal. She thinks my vaginal problems (Burning and inability to have intercourse) are caused by Vitamin D deficiency. I am going back to see her tomorrow and my test results should be back too. I admit to being rather skeptical. Any wisdom? Also, I read from some of your posts that your VV symptoms improved by changing diet. What did you increase or omit? Thank you for any help. I know many of you have been or are going through the same. I don't know what to do anymore. Best, Fi
CommentTo Fi: Please take the time to read through as many of the past guestbooks as you can. They will provide you with a vast insight into this illness. There are many comments about Dr. Peacock, you will have to make your own decisions about her. I don't have much respect for people who promise cures for an illness which has no established known causes or known treatments. Some sufferers get temporary or long term relief from different treatments and some have varying results, just be your own health advocate. Vitamin D deficiency is being more closely examined lately and there are blood tests to confirm such a condition. Your general practictioner can perfom these tests and prescribe Vitamin D3 supplements if necessary. Stay positive but don't expect miracles. Best of luck.
CommentHello everyone, I am a 22 year old girl from France, I have had vulvodynia for 9 months now. The first 4 months were a real hell as no doctor would find out what I had. Then, after having being tested clear from mycosis and psoriasis, my gynecologist and dermatologist, both specialised in vulva diseases, declared me vulvodyniac. I was prescripted Laroxyl in microdoses (25 mg a day) and a cream called Emla to use during painful sexual intercourse. The treatment is very efficient. I also go to a kinesitherapist to reeducate my perineum, and follow a therapy to manage stress. In about four monts I was already really better, I only felt pain during my periods, less and less strongly, and I could have sexual intercourse without using Emla about 1/3 of the time. Now it has been six months since the beginning of my treatment, and I am almost cured. I feel really mild pain about once or twice a month, and I can have sexual intercourse more than 2/3 of the time. My dermatologist attested that I don't have any visible signs of the disease anymore. I still have six month of treatment left. In the beginning I was told this disease was horribly long and hard to cure, but it has been only 9 months and I already feel way way better. My life is not totally back to normal yet, but it is close to. And the best in it is my boyfriend didn't leave me even when I could not have sex at all - so don't lose faith in your relationship if you start to have this disease. And don't lose hope, you never know when you're gonna heal. My story is the proof that vulvodynia is not necessarily a long disease.
CommentFrank, thank you for your reply. I appreciate it. I did read some of the back books and some of the comments about Peacocke. Clearly different people have different problems (although symptoms may be quite similar) and different personalities react to each other in different ways. Aside from all this, althouh I work in a completely different area, I am a micro-biologist and I have taken the time to read some of Peacocke's papers and related work by others as well. The Vitamin D story makes a lot of sense (My level turned out to be well below the normal range). I have decided to give it a try (most other things have not worked anyway). I'll write again in a few weeks to tell my experience. If anyone else out there is using vitamin D I would love to hear their story. Good luck everybody and thanks, Fi
CommentTo fi: You are very welcome. A few months ago my eighty year old mother called to tell me her doctor had prescribed a course of Vitamin D of 50,000 IU per day. I was shocked at this high level because I have taken vitamins for the last thirty years and I had never heard of such a dosage. I immediately started to research the Internet and discovered this was indeed the recommended dosage to bring Vitamin D level back to normal in those who are deficient. Usually one week of 50,000IU is prescribed and then a maintenance dosage of between 1000 to 3000IU. Good luck and keep us posted.
CommentHello--I was wondering if anyone knew how to find therapists who did myofascial trigger point therapy? I live in Ohio and am trying to find a good one. If anyone knows how to find listings i would really appreciate it.
CommentHello to All of you! I just want to inform you that I'm completely out of pain! Started forgetting about, I'm very very happy and full of enthusiasm! I hope some of you will follow my advices, they really worth it! Good luck
CommentHi Everyone I have had vulvodynia for 14 years now and have posted my history some years back. I live in New Zealand. To June re the lidocaine injections. As an introduction, I have been seeing a doctor here who is still registered as a general practitioner but has moved into the alternative health field. He is very knowledgeable and finds my case interesting as he hasn't come across vulvodynia as I have it before. Actually I don't think he came across many cases at all. He has prescribed for me natural hormone troches (these are specifically designed for me by a compounding pharmacist being a mix of hormones, estrogen, progesterone etc. - having had my levels established by a blood test). The troches are wax like squares that disolve and are absorbed through the membranes in one's mouth. For my general hormonal condition (I am 56) these have been the best I have used, and I had tried just about everything on the market, both natural and through prescriptions, i.e. HRT over the years since I was about 40. Back to the injections. In his research he came up with the suggestion of trying anaesthetic injections into the nerves that feed to the vulva area. (He spoke with a Doctor in Australia re this also ). It is a bit unnerving (forgive the pun) to say the least to have this done. The injection (it was a very long needle!) was put into the nerves through my stomach above the pubic bone - left and right. You have to have someone who knows what they are doing! You know it has hit on the right spot as you can feel it, not particularly pleasant but bearable. We tried two sessions of this. He gave me no guarantees and I can't say that there has been any noticeable improvement. That was about a year ago. During the course of testing my hormone levels (I am due to have this done again soon) he noted that my growth hormone is non existent. Apparently at my age I should still have some growth hormone. This is not something I have seen mentioned on this site. I also have a lot of food allergies which give me symptoms of IBS, depending on what I eat. Acid foods are right out. As I understand it, and I haven't researched this, growth hormone can be tailor made to suit the patient. Optimum growth hormone levels for women are at about age 30. It is only administered by injection and is very expensive here in NZ, about $NZ800.00 to $1,000 a month and being reasonable I think it would take a six month course to see if it worked. So, as yet, because of the expense I haven't been able to do it. As I have no growth hormone levels I am interested to know if this has affected the vulvodynia in my case and also the food allergies as I seem to have low level inflammation throughout my body. Does anyone else know what their growth hormone levels are? This Doctor attended a growth hormone conference in Paris last year - anti aging seems to be the main area it is known for, but it seems other area medical areas which it could be useful for are being explored. Like Frank's wife I too have tearing of the tissue at the 6.00 p.m. position. Actually it is more like the skin is rubbed off during intercourse, so that doesn't happen often! I have also just started using a cream on my vulva which is produced in New Zealand using Active Manuka Honey and Propolis (18+). It is healing and moisturising and I haven't reacted adversely to it. Manuka honey has antibiotic and antiseptic qualifies and is used in wound healing and burns. Manuka is a native tree here. Commonly known as Tea Tree (Oil) here. When my skin tears/rubs off it takes about two weeks to get back to normal. I am also about to try frequency specific microcurrent treatment for skeletal/muscular pain in my back, and my stomach (IBS symptoms), I have had two treatments for the vulvodynia. These are being done by a woman naturopath whom I feel is very knowledgeable also. The seminar on FSM and pain management she attended in Melbourne was run by a Canadian Chiropractor and one of the conditions on the list that this process could help was vulvodynia, which surprised both of us, although the most common pain improvement has been with muscular/skeletal. If I have any positive results (or otherwise) I will post them. Kind regards to everyone on this site - vulvodynia is a very distressing condition - I've tried to keep positive - at one stage I thought I was the only person in New Zealand with it! This site is invaluable.
CommentHello all - I have had vulvodynia for over three years. I mostly self diagnosed through reading the internet. My doctor agreed with me and after the most agonizing months of sever burning (I can only describe it as if a match was held against my skin in my entire vaginal and anal area) stabbing pains in my pelvic area that ran down my legs and off and on itching, she prescribed Elavil. I felt horrible on it, but it did help the pain, although every few weeks I had to increase the dose until I was at about 100 mg a day and it wasn't helping anymore. I took myself off of it and dealt with pain for about a year and a half with no help. I stopped going to the doctor for this because there were no more answers anyway. I read many posts but never posted on this site myself, I got too depressed, truthfully, to hear of all the others suffering like myself. I recently read a book called Greens for Life" by Victoria Boutenko, and I believe it is helping me greatly. I know many people are following the low oxalate diet and perhaps that helps, but this book tells you how to hugely increase your vitamin and mineral intake through blended greens and fruits and it can heal almost anything, from cancer to diabetes, etc. I have been drinking these "smoothies" daily now since August 1. In the first two weeks, the stabbing pains in my legs have completely gone away. The next month the radiating pain all across the vaginal area dissipated and now the only pain I seem to have regularly is around the clitoris. I continue to use a small bottle of warm water to rinse after I urinate in case the oxalates are bothering me, and that seems to help and be soothing. Here is my recipe below in case anyone wants to try it. I do suggest reading the book too, it is fascinating and a very easy read. I ordered it from Amazon. As an aside, my husband has Parkinson's Disease and has had severe leg pain for 10 years. (He is 42, I am 34) He drinks the smoothies every day as well and his leg pain has greatly diminished. He also sleeps much better. My bowels are better too (I am celiac - autoimmune problem with gluten) VERY STRONG BLENDER NEEDED (I have a K-Tech, others use a Vitamix. Most regular blenders won't work as they are not strong enough) 1-2 cups of water or fruit juice 1 + cups of frozen mixed fruits of choice (I love strawberries, mango, peach and banana) 6-8 large leafs of greens, or more if they are small (kale, spinach, romaine, dandelion, beet or mustard greens, etc) any additions you like, such as ground flax seeds, aloe vera juice, your vitamins, etc. Blend on high, mixing as needed until very smooth. If you like it more frozen, add more ice cubes. With the right combination of what you like, this can taste great. I get up every morning at 5:30 to make this before work. I can actually feel pain going away if I am in pain and I drink it. This amount will make a huge blender-full. Drink as much as you can daily. If you can't drink it all in one sitting (I can't!) Put the rest in the fridge and drink it later. I highly suggest you try this - it is so healthy and the ground flax seeds with the Omega 3s will really help the mental and emotional anguish and depression that inevitably goes with dealing with this problem. Please email me if I can answer more questions about this and post your responses as I would love to read about who has tried this too. Thanks - Keep your spirits up. I have always believed I would find something to help me and I think my strong conviction finally led me to this. Keep in touch.
CommentI am curious to how many people were effected by Vestibulitis after taking Cipro and if so, what were your symptoms. Thanks. you can e-mail me at cynthiaallf@aol.com
CommentHas anyone heard of this? I had a biospy to rule out precancer. I've had itching for about 2 months. The tests came back with eczema. I had the biospy done toward the back inner part of the vagina. I feel inflammed from the anal area to the outer back vaginal area. Any thoughts?
CommentAllision--In regards to your question as how to find a PT for PFD... The following link has a long list organized by state: http://www.ic-network.com/md/ptlistings.html#pm These are the practitioners who come up for Ohio: Eastlake -Troy Zigman, PT, Hands On Physical Therapy of Mentor, LLC. - 34536 Lakeshore Blvd., Eastlake, OH 44095 - Phone: (440) 951-9553, Fax: (440) 951-5916 Interests: Manual physical therapist with emphasis on myofascial release. Practice is focused on spine care, head, neck and TMJ pain. The origin of dysfunction is often related to pelvic torsions. I focus on pelvic correction and stabilization training. Mason -Kathleen Novicki, PT, Sports Therapy, Inc. - 7450 Mason Montgomery Road, Mason, OH 45040 - Phone: (513) 336-0540 Pickerington -Cathy Konkler, PT, Rehabilitative Associates, 479 Hill Road North S.R. 256, Pickerington, OH 43147 - Phone: (614) 837-8227 - Interests: pelvic floor dysfunction. Another great resource is the National Vulvodynia Association. You must pay dues to join (if you are unable, they will allow you to pay a lesser amount just to cover shipping costs for their newsletter). They will send you a comprehensive list of all sorts of (self-proclaimed) vulvodynia healthcare practitioners.
CommentAllision--In regards to your question as how to find a PT for PFD... The following link has a long list organized by state: http://www.ic-network.com/md/ptlistings.html#pm These are the practitioners who come up for Ohio: Eastlake -Troy Zigman, PT, Hands On Physical Therapy of Mentor, LLC. - 34536 Lakeshore Blvd., Eastlake, OH 44095 - Phone: (440) 951-9553, Fax: (440) 951-5916 Interests: Manual physical therapist with emphasis on myofascial release. Practice is focused on spine care, head, neck and TMJ pain. The origin of dysfunction is often related to pelvic torsions. I focus on pelvic correction and stabilization training. Mason -Kathleen Novicki, PT, Sports Therapy, Inc. - 7450 Mason Montgomery Road, Mason, OH 45040 - Phone: (513) 336-0540 Pickerington -Cathy Konkler, PT, Rehabilitative Associates, 479 Hill Road North S.R. 256, Pickerington, OH 43147 - Phone: (614) 837-8227 - Interests: pelvic floor dysfunction. Another great resource is the National Vulvodynia Association. You must pay dues to join (if you are unable, they will allow you to pay a lesser amount just to cover shipping costs for their newsletter). They will send you a comprehensive list of all sorts of (self-proclaimed) vulvodynia healthcare practitioners.
CommentDid anyone else watch The Tyra Banks Show today? They discussed everything EXCEPT Vulvodynia, so I was very disappointed.
Commenti've been suffering on and off for 6-7 years now. i got it to go away for a couple of years inbetween, but for the past 18 months it has been back and for the past 3 months i've been in mindblowing PAIN. i just received interferon shots and now and am in more pain. is this normal? do the interferon shots hurt at first and then make everything better?
CommentTo Sue: I didn't catch the show, but if it's like most of them like Oprah when the discussion turns to sex the adults turn into ten year olds. I don't think Oprah can say Vagina or Clitoris without cringing, laughing or gigling. Our society is so terribly backward when it comes to discussions involving sexuality or sexual anatomy. Look at what happened when Janet Jackson's breast was exposed during the SuperBowl? You'd think children were exposed to a graphic porno flick, it was just a woman's breast for God's sake! You are expecting too much from a society where a woman can get a ticket for breast feeding her baby! Vulvodynia is still taboo, women have trouble discussing it with other women even family membes and close friends. Other women don't want to hear what terrible things can happen, they can't take it. Oprah, Tyra and the rest will keep playing it safe, they dare not mention Vulvodynia because they would have to say "dirty" words and explain difficult things to an audience who just wants to be entertained. This will be a dificult task, getting this mystery illness that involves such an intimate area of a woman's body the necessary public attention it deserves will not be easy. The most we have seen so far is an occassional blurb in a woman's magazine, that's it. Oh, Oprah did mention the word once when she had the Bergman sisters on a few years ago and she laughed! Myself and others have written to the Oprah show and not gotten a response. All I can say is don't give up, write to these shows and state your case. Best of luck.
CommentMaw: Unfortunately, my physical therapist says that she has seen interferon shots make things much worse. They are 50/50. If you'd like, I'll send you some stretches that help stretch out those muscles. I'm sorry about your response!
CommentI saw the Tyra show and was also disappointed that nothing was mentioned about pain or burning due to vulvodynia...I was hoping they would talk about it to at least acknowledge that it exists. I am sure they wouldn't have had any suggestions, though. I want to give you all an update from my first and only entry on October 10. Please refer back to that for more details of my situation. I am writing to say that I have found COMPLETE RELIEF from the burning pain and I am completely without symptoms at this point! My hunch that my condition was caused by a systemic candida yeast infection was apparently correct. At the time of my entry I planned to start on ThreeLac, a powerful anti-fungal, which I have been doing for the past several weeks. That did not take away the burning, but I did experience some of the "die-off" reactions so I felt it was working. I also added pao d' arco tea as a further means of killing off the yeast, but still had the burning. Then, just last Monday I started on a probiotic that I read about that had 15 different strains of good bacteria in a whole food base. Within 48 hours I was about 99% relieved and as of today, one week later I am completely without any burning or itching sensations. I wanted to wait to be sure that this is really working for me before I shared this information, and I do feel that this is the cure for me, and may be for many others as well. The product I'm taking is by Garden of Life called Primal Defense. They also have a good fungal killer called Fungal Defense, which I am sure would be just as good as ThreeLac if not better and cheaper, too. You should look into information about candida to find out all the symtoms it can cause such as the burning and itching of vulvodynia, loss of sex drive, loss of feeling and sensation, inability to reach climax (and I thought these were all results of menopause--sex is now not only possible but enjoyable again) menstrual cramps, plus irritable bowel syndrom, fibromyalgia, and many other auto immune disorders. Candida actually penetrate the lining of the intestines and cause leaky gut symdrome leading to auto-immune disorders. Learn more at www.candidafree.com under the resources tab. (I also had IBS most of my life, which has become much better with another natural remedy I've been taking for the past year called Ambrotose by Mannatech). I have also had my daughter taking the ThreeLac because of the menstual cramps she's had and the last time was somewhat better for her. She is now taking the Primal Defense, too, so I'm hoping this next month will be even better still. We have noticed that her acne has cleared up while taking the ThreeLac, (acne is also related to candida overgrowth). If you have had IBS, fibromyalgia, severe sugar cravings, hormonal imbalance, etc. I would encourage you to do the research on candida overgrowth and probiotics before you do anything drastic like surgery or prescription drugs. It has been a simple natural cure for me, but you should be prepared to go through yeast die-off, which can be difficult for a few days. I am just so happy to be free of the constant burning and my husband is, too! I'm hoping this will help many others as well. Kathy
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CommentHi everybody--I have a quick question for anyone who knows about yeast die off reactions. i have been taking anti-yeast supplements for a couple of weeks now and been on a diet, and have actually noticed a huge increase in my pain. Is it possible that this is part of the die-off reaction? I I know I have heard of symptoms like chills and fever, but didn't know if it could cause an increase in vulvar pain. If anyone has any ideas I would really appreciate it.
CommentMary, I just went through several weeks of killing off yeast myself. I had actually thought it would decrease the burning, too, but it stayed about the same, maybe more painful at times. It could be that the areas where you are most susceptible to yeast manifestations take the longest to see improvement in. It wasn't until I added the probiotics to my regimen that I experienced total relief. (you probably read my post above). I would highly recommend adding this because relief was very quick. If you are still doing the kill-off you should be sure to space the probiotic well apart from when you take the anti-fungal. The probiotic I'm taking says to take it on an empty stomach 3 times a day, but I've been taking it more like twice a day. Hope this helps! Kathy
CommentHi Everyone! I think that vulvodynia has many different causes, for me mine was caused by pelvic floor dysfunction. After several months of pelvic floor psyiotherapy I am 100%pain-free and have my life back. If your symptoms including itching, pain, urinary symptoms and period pain and if they were brought on after an infection please have a qualified pelvic floor pysiotherapist evaluate you. If I had not found this therapist I would still be in pain and still searching for answers. Pysiotherapy can cure pelvic floor dysfunction. Sarah
CommentI want to second what Sara said. I have had enormous relief from physical therapy. Pelvic floor pain can be brought on by stress, trauma ( a fall), sitting too long, surgery, yeast infections, and urinary tract infections. Everyone should be at least evaluated by a PT specializing in pelvic floor pain.
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CommentI looking a doctor in nsw australia that that knows about about vulvodynia.I have burning,pain,redness,dryness in my vulval and vagina it never goes away Its been going on for about years.I 've been to many doctors and the last one I went to give me a erythema ointment which made it worse.I also have interstitial cystitis which made go the toliet all the time and think this vulvodynia brings on the frequency.
CommentSorry. I sent that last message before I meant to--not used to typing in these little boxes...As I was saying, I'm going to see Dr. Toth. After a year of trying various things and seeing how my body responds, I really do think that I have an infection of some sort. I have symptoms of vestibulitis (redness and swelling at the opening of the vagina) as well as very serious pain at the point where the labia meet right below the clitoris. The pain ebbs and flows, but I can't tie it to diet or physical therapy or salves or anything. The greatest relief I have is to rinse the area well--usually in a sitz bath--several times a day. It feels as though the secretions from my vagina are toxic to my skin. In fact, it helps to wear a tampon most of the time during the day. I am very nearly pain free every morning when I wake up, but once I get up and start moving around, the pain kicks in. I use boric acid suppositories every day, and they provide the most relief of any medication I have tried. I also lubricate the entire vulva with one or more of the following: vitamin E oil, vitamin A oil, coconut oil, Aquaphore ointment. It helps for me to keep the area moist. I have been to a couple of gynecologists, a dermatologist, and a physical therapist, but the most help has come from a doctor who practices functional medicine. She has been open to trying different things, both pharmaceutical and herbal. She has also offered suggestions of things to soothe the inflamed tissues. In my experience, it has not been the gynecologists who have been the most helpful to me. I have done alot of research on my own, which has led me to Dr. Toth. Any thoughts, anyone? I would appreciate hearing from you.
CommentAnn, Your symptoms sound just like mine...I have also had the drainage that feels like acid burning. I also went to my gynocologist looking for answers but when the yeast culture came back negative he said it was probably a side-effect of menopause. It's interesting to see how many other women here have the same symtoms that are a lot younger...the MD's clearly don't always have the answers. I've writen an entry (above) about my success lately with antifungals, since I believe this problem relates to a systemic candida yeast infection. I've done a lot of research on this and it all seems to make sense, plus my own experience recently. I had some great success after using a powerful, natural anti-yeast formula coupled with a good probiotic. This combination gave me complete relief, but like a dummy, I forgot about the fact that once you stop killing the yeast off you still need to keep taking it for up to a few months. Once the first batch dies off the eggs will hatch and it starts over again in about three weeks, which is exactly when my symptoms started up again. I'm back on a different anti-yeast with the same probiotic and still am having symptoms, athough not as strong or consistent. After reading more on the subject I may ask my doctor to put me on Lamisil for a few months until I can really knock it out. After that I will maintain with the natural anti-fungal and probiotic on a daily basis. When I had my three week reprieve I have to say that it was wonderful...libido returned, as well as a few things that I had attributed to menopause before. I feel that I am on the right track but have had a set back due to my own stupidity. You should do some research on systemic candida overgrowth, if you haven't already to find out more about how it works, how the toxins from the yeast are what react in the body in different ways. For me it seems to have done a number on my hormones, caused irritable bowel syndrome and vulvodynia, but it can also cause lots of other problems like fibromyalgia and alergies to name a few. Kathy
CommentHey everyone--has anyone ever heard of a link between vulvodynia and celiac disease? I just found out that I am gluten intolerant and while I dont' really have stomach issues I am wondering if it would help my vulvodynia.
CommentTo Annie:My wife tried a diet a couple of years ago that eliminated the most common allergens such as wheat, corn, yeast, milk products, etc.. In her case the diet did not help with her symptoms itching, some burning and thinning skin. Since everyone is different and there hasn't been any cause discovered (to my knowledge), there is always a chance eliminating the foods you are sensitive to because of your digestive condition may help in other areas. The most popular ingredient in foods to avoid in order to relieve some symptoms of Vulvodynia seems to be oxalates. Hope this is of some help.
CommentKATHY: Thanks for the info. I've found some relief from antifunglas but not as profound as the relief you got. I haven't ruled out that yeast is a factor, but I am also investigating other avenues. I am sending a urine sample to United Labs in McLean, VA, this week, as well as a sample of my husband's semen, for analysis. This lab is well known by doctors who specialize in interstitial cystitis and offers very sensitive testing for bacteria and yeast. As we all know, regular testing through the doctor's office rarely finds anything, so I am branching out. If you look up this lab online, it outlines how to prepare the sample and ship it to them--no need to have your doctor collect it from you. II am curious to see if anything shows up. I'm still hoping to hear from anyone with experience with Dr. Toth. I'll add to that to say that I am also curious whether anyone has been to the Medical College of Virginia (MCV). According th their website, there are a couple of doctors there who treat vulvodynia. I have tried to get more info but have been unsuccessful so far. I live in southwestern Virginia and there are not many resources in this area. Ann
CommentHi, I just wanted to say that I am really gratetful to everyone for all their information on this site. I have been reading for about 4 months and have learned so much. I thought I should share what has been working for me. I really found the list of things to do on Dr. Glazer's site really helpful, along with the Vulvodynia-Treatment Guide. I ordered the guide from Vulvodynia-Treatement.com This guide is a complete summation of most things I have found online about improving Vulvodynia symptoms. What I am most excited to share is that I have been following the author's "10 steps" for about 6 weeks, including taking the supplements in her COMPLETE V-Treatment Kit, and I am actually noticing a SIGNIFICANT positive difference. I am on my second kit now. I have Vulvodynia Vestibulitis and convential sex with my husband has been limited to a couple of times a month - until I started on this Complete Kit program. What I notice mainly is that my flare-ups are becoming fewer and far less painful. I think the estrogem cream that the author mentions getting is also recommended from the Vulvodynia Support organization, and I think this, combined with the Calendula Creme I get, as well as sticking to a low-medium oxalate diet and taking these supplements is giving a one-two punch to my Vulvodynia!!! I cannot tell you how happy I am to feel that my life may actually be turning around. I have had this condition for four years. The only thing I can think that might have started it, after reading this guest book, is having multiple bladder infections and taking antibiotics too many times. I think I just got my digestive and hormonal systems completely out of whack, which somehow triggored the Vulvodynia. Best wishes to all of you, and I hope you find this information helpful. L.H.
CommentWhen trying to find food allergy connections, don't rely on the blood testing - it yields so many false positives for food allergies. Take a skin test instead. I also thought I was allergic to gluten for awhile but had no symptoms. Then a skin test showed I wasn't allergic to any foods at all.
CommentHi Kristin--I wanted to ask you about the testing you had. I had blood testing, too, like they injected something into my blood and waited to see a bump and then neutralized it afterwards. Anyway, these tests said i was allergic to wheat, yeast, corn, rice, milk, egg yolk, egg white, potatoes, tomatoes, bananas, almonds--so needless to say life has been hard avoiding htese foods. Anyway I don't ever get stomach pains (or not really at least) but I thought maybe it was causing my vulvodynia. I had skin tests done a while ago which said i had a slight allergy to milk adn egg white but not much. So anyway I guess i was just wondering if you had any improvement with going off gluten or any other food allergies or if you found anything else that worked. Thanks!
CommentDear Leslie, I went under Vulvadynia Treatment .com and got nothing. How do you get to this site that provides a kit that will lessen symptoms? This seems very interesting. Thanks. Sara
CommentSara, the site you're looking for is:www.vulvodynia-treatment.com.
CommentI've been writing entries here since October about my success treating vulvodynia with anti-fungal medication and probiotics. I've been on a search for more information about the cause of vulvodynia rather than just trying to treat the symptoms. I am sure there are many successful treatments available, but until the root cause it dealt with it will always be there, along with alot of other accompanying medical issues. I have just read a book called "I Was Poisoned My Body...I Have a Gut Feeling You Could Be Too" by Gloria Gilbere, N.D, D.A. Hom, PhD. She is a person that went through hell trying to get well from dysbiosis (unbalanced intestinal micro-flora) that was brought on by overuse of several different prescription and over the counter drugs. She explains her journey from good health, to several severe allergic reactions to all kinds foods and environmental toxins, chronic pain, hair loss, insomnia until she was finally able to get to the root of the problem. She explains that several factors, including overgrowth of candida cause the digesitve tract to become putrified and to "back up" as she explains, much like a clogged drain. The overflow accesses the body through "leaks" in the intestinal wall (hence the leaky gut syndrom) which causes toxins to spill over into the liver which can't keep up with the overload of toxins. The back up keeps working its way thru the body and ends up causing inflammation in joints and muscles, causes allergic reactions and a whole host of other autoimmune diseases such as fibromyalgia and arthritis. The way she got well was through a series of natural remedies to first deep cleanse the bowel, kill candida and then repopulate with good probiotics. The book is well written and has made the problem crystal clear to me, although I can't completely spell it out here. I would encourage you to get ahold of this book, or do some research on candida and leaky gut syndrome. I am have a feeling that vulvodynia and IC are autoimmune reactions resulting from an unhealthy digestive tract. I have had great success with my two main complaints, irritable bowel syndrome and now vulvodynia by just using an anti-fungal and a good probiotic.
CommentI would like to hear from women who have tried biofeedback for vestibulitis. I have tried all the lifestyle and diet changes (which did stop the itching) and hormonal creams as well as lidocaine with minimal relief for the pain upon petetration. I am ready to try biofeedback and would love to hear other's stories. Thanks!
CommentHi! I just want to let everyone know that I have Vulvadynia and Interstitial Cystitis. But I have gotten a ton of relief from a natural product and would love to share it with anyone that is ready to defeat these 2 horrible diseases. I really feel that I have found the answer. Just email me if you are interested and I will share with you what I have discovered. There is hope for us with these diseases, and its called MonaVie. If you want, check out a website that I purchased to better help explain this awesome product! www.mymonavie.com/monalisa We don't have to be helpless! I know that I have never felt better with both of these diseases and hopefully other people can feel the same! I also found relief in other ways with my vulvadynia, even before I found MonaVie. Just email me if you want more details. Mainly I had taken some herbs that over a short time took away the vulvadynia very well! I still don't eat blueberries though! Plus I stay away from sugar just as much as possible! I would love to help someone get relief as well! I feel that what I have learned can save other people from these horrible diseases.
CommentEvery once in a while someone posts to have discovered a cure for vulvadynia, correct spelling Vulvodynia. I'm sure "mona vie" antioxidant, all natural juice is good for general health but to suggest it will treat and cure the host of symptoms which comprise this mystery illness is quackery and cruel. I'm happy for anyone who can find relief from the physical and emotional pain associated with Vulvodynia but I cannot imagine mona vie juice to be the miracle. I wonder if it is high in oxylates which have been found to worsen some sufferers? All I can say is good luck if you try it and don't have your hopes set too high.
CommentI'm wondering if that product asks as a neutralizer to acidic foods, in which case I can understand why it might help. I also know that the term vulvodynia is a confusing one, because it encompasses such a wide arrange of syptoms that are not understood or misunderstood. I think it is unfair to lump all of vulvodynia into a "mystery" disease that has "no cause or cure." There are many many women who have been cured by physical therapy, and I am one of them. My PT sat down with me and we discovered the cause together, she taught me all about it, and she proceeded to cure me. She has cured lots of women and balks at the term "mystery" about the disease. Continuing to call all vulvodynia cases a mystery perpetuates the myth and leaves a lot of women in unnecessary pain. I've educated every doctor I saw about my physical therapist and now they send their patients to her too.
CommentHi, its been a little while since i've been on this. I have been having vaginal disharge problems for about two and a hlaf years now. My symtpoms started after a LEEP procedure i needed when they found dysplasia...but after the procedure, they found that the peice they took out, was normal! ugh.... my symptoms..which are constant.... watery, sometimes pasty, yellow discharge, irritates outside of vagina, and aroud urethra, urinating is NOT painful...has an odor of dirty socks, like athletes foot, kind of cheesy... I know TMI :o( I have been to several docs. they do not see anything abnormal under teh microscope, and my paps (like 8 of them) have all been normal. I'm negative for Trich, gonnerea, clamydia, herpes, yeast, bacteria, strep a, and b,,,, I was thinking, maybe its dequamative immflammatory vaginitis but i was treated for two weeks with clyndamycin cream (suggested treatment) and it made me feel better but it didnt go away...maybe i should try it for longer?) i tried cortico steriods but that did nothing. Has anyone has this problem? I never had any vaginal issues until all this, not even a yeast infection, i dont know why this is happening. Could it be aerobic vaginits? go that go undetected? any suggestions would be nice! i actually saw a specialist in boston and she said it was chronic yeast, even though my cultures were negative..does tht sound right? i took diflucan for four weeks and it did nothing but make me more irritated.... any help would be nice, im at my wits end, i get so depressed about this...
Commentalso, the discharge when it his the water falls appart into flakey peices, and my mentrual blood is the same. And this discharge is far less than i normally would have...i used to have clear mucousy odorless non irritating discharge... could it be hormonal even though i am 21?
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Commentfor Tired of Suffering: I think you may be on to something with your idea about aerobic vaginitis. I wonder if you contracted a bacterial infection when you had the LEEP procedure. I know that you have had lots of cultures--all negative--but the symptoms you describe really do sound like infection. In my search for answers I have read alot about bacteria and encourage you to do the same. Two places you might find helpful information are http://emedicine.com/MED/topic2945.htm This article explains why it is so difficult to culture bacteria. Another place for you to look is www.fertilitysolution.com/pdf/manuscript.pdf. This is a book by Attila Toth, MD, whose speciality is the interface between infertility and infectious disease. He treats patients for infection alone, not just infertility, and he also treats chronic prostatits, which is in many ways the male counterpart to vulvodynia. I have been considering going to see him, mainly because I found myself in the pages of his book. His theories fit my situation almost perfectly, and reading his book made me look at vestibulitis as part of a disease process rather than as an isolated incidence in my life. You have a very specific event that led to your symptoms, and I think you would benefit from reading Dr. Toth's explanation of the transmission of bacteria and the progression of bacterial infection once it gains a foothold in the reproductive organs. If you want to contact me directly, please do so. I know how hopeless you feel--all of us in the guestbook know that awful place. But I am here to tell you that education is power, and you are your own best detective and advocate. Good luck to you. Ann
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CommentCURE: This really works. I have been having this problem for over a year going to doctors who couldn't find out the problem. My mothers friend in fl. said her mom had the same thing and used these 3 types of herbs and was completely healed. I started 3 days ago and i am able to have intercourse without hurting for once. I am so happy and my husband is to. You go to a herbal store and get golden seal, juniper seeds, magnolia (you can use the bark of the tree if you want) just slice the bark with some of the green under neath. Golden seal is expensive though about 8.00 an oz. but it is worth it. I got i 2 oz of each and you boil water after it comes to a boil . Pour about a cup 1/2 of the boiled water in the a GLASS jar. it has to be glass. Then put your herbs in the jar and let it seap for 15 minutes. When done pour it in a spray bottle. And everytime you go to the bathroom spray it all over and make sure you get it on the lips and everywhere else that it hurts. This really did work for me. I am so happy i hope this works for you. Oh you don't have to refrigerate it just keep it by the toilet and spray everytime. Shake it up though before you spray. YOu can also take a teaspoon of it a day if you want. It taste like dirt though. If any questions email me at mommy_tobe_2007@yahoo.com
CommentSharon - Please, please share the details of your physical therapy! I started out with pain in the hymen area because of a flap of skin out of place, after a while the pain moved from deep inside to the vestibule. I am beginning to wonder if the hymen eventually stretched and fixed itself but the vestibule got "scared" and started tensing up anticipating pain upon penetration. This is the only time I have pain as long as I don't wear tight pants, stay away from perfumed soap, etc. Does this sound anything like your symptoms? I live in a remote area and am thinking about getting Dr. Glazer's at home biofeedback kit, is it similar to what your P.T. did with you? Thanks for any insight you have, I've been dealing with this for at least 10 years and my OB/GYN is out of ideas.
CommentA couple of years ago I was diagnosed with Vulvodynia by a dr. who really did not have time to work with me. This fall I switched to another gyn (not OB/GYN) who did alot of tests including a biopsy for Lichen Sclerosis. I had seen the pics on the internet of this condition and was sure that I did not fit that profile, but she said many patients do not have visible symptoms. Anyway, the biopsy came back positive and now I am on a regimen of clobetasol (sp?). Anyway, I've only been using it for a couple of weeks, but the treatment is supposed to take effect in 3-4 and it is usually very successful. I urge anyone with a vulvodynia diagnosis who has the symptoms (listed on the internet) to discuss this with your dr. even if you look "normal." It could be that a diagnosis and successful treatment is in your future!
CommentHey everyone, i wanted to see if anyone had any information about capsaicin cream? I wanted to try it but have read that you should get it mixed with a base of something else to make it not burn as bad--does anyone know what it should be mixed with, or has anyone had any good results with it?
CommentJodi, Women with vulvodynia can have really differeing symptoms. Mine was pain and burning in the vulva area and also this feeling of pain up into the vagina. My PT does use biofeedback, but not until the very end of treatment. At first, she uses myofacial release and trigger point therapy to relax the muscles so that they don't tense up and press down on the vaginal/vulva nerves. When the patient is almost completely done with pain, then she starts with the biofeedback. Unfortunately, biofeedback can make the pain worse before it gets better because you are strenghtening already tense muscles. Probably better to do yoga and also a lot of stretches....i can send those to you if you want.
CommentJodi, Women with vulvodynia can have really differeing symptoms. Mine was pain and burning in the vulva area and also this feeling of pain up into the vagina. My PT does use biofeedback, but not until the very end of treatment. At first, she uses myofacial release and trigger point therapy to relax the muscles so that they don't tense up and press down on the vaginal/vulva nerves. When the patient is almost completely done with pain, then she starts with the biofeedback. Unfortunately, biofeedback can make the pain worse before it gets better because you are strenghtening already tense muscles. Probably better to do yoga and also a lot of stretches....i can send those to you if you want.
CommentHi was diagnosed several years ago with Lichen Sclerosis by biopsy also. My L.S. has been in remission for quite awhile now, but I now have Vulvar Vestibulitis. So, I went from one vulvar disease to another. Thankfully, my V. V. hasn't been too bad lately. The burning has gone, but I still get irritation and soreness sometimes with an occasional stabbing or shooting pain. Clobetasol ointment helped get rid of the burning and now I use Estrace cream and Emu oil and take an Aveeno bath sometimes. I do also take Xanax and Flexeril at night, but I don't think either one affects my vulvar pain one way or the other. Sometimes exercising causes pain and I had to give up using my stationary bike. I either walk on the treadmill for 45 minutes or do an exercise DVD and I ordered a yoga DVD to try out. Hope this info helps someone.
CommentSharon, Thanks for the ideas about biofeedback, I am going to pursue a physical therapist after I test 8 weeks of lidocaine. I would love to try the yoga you use. I am already a yoga person, but only really do it to relieve work stress or stretch after exercise. Anyway I can tie that into VV would be great. Thank you!
CommentHi! I just wanted to let everyone know that the MonaVie juice that I take is acidic of course. And when I first took it I was flaring a bit. But, then after using this product called Prelief, (It takes the acid out of foods and has really helped my I.C. and vulvodynia) I can tolerate the MonaVie very well, and I don't get any pain when taking the MonaVie. Then it can give my body the antioxidants that my body needs to fight off the inflammation that is in my body. This is why I believe I am feeling so much better! Also, I take acidophilus everyday. And this really helps my I..C. and vulvodynia. Plus, I am very careful to only use dove or tone soap. And I stay away from any perfume etc. And I also have acupuncture done right above my pelvic hair area at my chiropractors office. At least, these are some things that have worked for me. And maybe they can work for someone else. I am not trying to say that MonaVie has cured me. I am just saying that it has definitely put me in control of these horrible diseases, not these diseases controlling my life! Hope this information helps someone else find relief as well! www.mymonavie.com/monalisa will better explain MonaVie if you want to check it out for yourself. If anyone wants to get it at the wholesale cost that I buy it for, you can use my number to order if you like. I'm not trying to just sell this product. I just want everyone to know that it has worked for me. You can email me at my email address if you like as well.
CommentI just wanted to add some other natural things that have worked for me. Again, for me at least, the MonaVie has been a huge help. But, there is other things that I have done and still do alot of them. I wanted to let other people know as well......My mom had heard that almonds and asparugus are good for vulvodynia and I.C. patients. So, I eat them quite often. As mentioned before, the acidophilus with probiotics is a must for me. It helps alot! Staying away from pop, and eating very little sugar has been very important in keeping my pain away. Eating organic as much as possible is really good for us with these diseases. Using a heating pad on the painful area takes the edge off alot! Thankfully I don't need my heating pad much anymore. And like I mentioned before, using Prelief with every meal and even with snacks has been a big help! I can't remember if I mentioned where I get Prelief before, but it can be special ordered from the Wal-mart pharmacy. Or if you have a Wal-greens, this is where I almost always get mine. It comes with 120 tablets and cost $10.99 a bottle. I usually take 2 to 3 tablets per meal, and definitely if I am eating something acidic like sphagetti, a pop or chocolate. (We all have to have a pop and chocolate every once in a while---I just do it occasionly.) Anyway, I am just trying to give out some things that have worked for me. I know that these have worked quite well, because its going on almost 3 years now that I have felt for the most part in control of these diseases. Oh, and I did detox my bowels and do an intestinal cleanse along with a parasite cleanse for quite some time. I don't do this anymore, because they say the MonaVie detoxes your body. And I am just doing so well. So, obviously these things are working. If I can think of other things I do, I will write it down. Just trying to help people get relief of this horrendous pain. Best wishes!
CommentHi everyone. This message is to Sue and Celeste and to anyone who has Lichen Sclerosis. I also have Lichen Sclerosis and have been following the steps in the Vulvodynia Treatment Guide and it has really been working for me. I read on another doctor article site that Calcium Citrate helps women with Lichen Sclerosis as well as women with Vulvodynia. I take the Calcium Citrate that I order from www.Vulvodynia-Treatment.com. I like it because the pills are in capsules and not the big chalky calcium pills that are so hard to swallow. I had LS for 6 very difficult and sad years and ended up getting divorced as a result. I went to so many doctors and spent so much money on products that I thought would work but did not. I have been following the low oxalate diet faithfully since July and taking the calcium pills every day and it has really made a difference. It is so nice to have this site to read that there are other women like me. I love the Internet and how it helps us share information. Good luck to everyone and thanks. Dorothy.
CommentHi. I just read your post about the Calcium Citrate. I love their Calcium Citrate too! There is a special on now at www.Vulvodynia-Treatment.com that you get a third bottle free with your Quick-Start Kit. This kit includes Calendula Cream and the Vulvodynia Treatment Guide which is an excellent resource. I have had Vulvodynia Vestibulitis for 9 years and have found a lot of success using daily topical estrogen creme. I only use a little bit of cream once a day and I also gently rub in Calendula Cream on top. They actually describe this in the Vulvodynia Treatment Guide and it has really helped. I used to have varrying degrees of flare-ups almost every week, and now I get a flare up maybe every few months when I have had too many high oxalate foods or I am feeling a lot of stress (I have 4 kids - which is great but can be stressful!). I hope this information is helpful. Everyone who posts here has been so helpful to me. Here is the website where you get the free bottle of Calcium Citrate - I think until January: http://www.vulvodynia-treatment.com/vulvodynia-my-story.html
CommentHi, I have a question for anyone out there who has ever used capsaicin cream--if there is anyone who found success with it, about how long does it take for it to sto burnign so horribly when you first put it on? If anyone knows anything about this cream I would really appreciate to hear about it. Thanks!
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Commenthi everyone, I would like to hear from anyone with V.V who has given birth. I was diagnosed with V.V 4 years ago after a lifetime of pain ( seriously - it started while I was a little girl worsening in my early teens. I am now 31). I guess I am unusual as I managed to have great success with biofeedback treatment and have been 90-95% painfree for the last 2 years. Until now-I am 6 months pregnant and the V.V came back very early into the pregnancy and while not back where I started I am close to it. I am again on the original treatment but finding it difficult to really apply myself as I feel so disheartened by the fact I am back to square one again. I am really scared about the delivery despite the fact that I know that studies have shown there is no difference for woman with V.V then 'normal' woman. The other question I have is do you other ladies find that you get a lot of vaginal fissures? I always have been constant in the pregnancy and I am scared I will tear there in the delivery. Any info would be most welcome and you can email to my email address. Anyone wanting info on biofeedback feel free to ask...oh and I am in Australia so anyone wanting info on help for V.V you can email me about that as well!!
CommentCath, I have had VV for at least 10 years. I had a baby in 2003 so I can still relate to your anxiety. Never having known what it feels like to not be in pain in the vestibule I can't really tell you if it will be any worse than anyone else's experience. In my case my girl did not want to come out so I was in labor for 40 hours with a lot of exams from a doctor who wasn't my regualr OB/GYN and didn't realize, or care, that I was extra sensitive. It was extrememly painful when he broke my water and when I finally delivered (thank God I had an epidural!) she was "sucked" out quickly and I did tear. That area of the perinium has since remained painful along with the vestibule...ugh! I hope this gives you an idea of what it was like for me - painful but probably not anymore than someone with a stubborn baby who doesn't want to come out :) Overall, the joy of that new baby comletely overshadows any pain from VV...I hope you don't worry too much about it, if you've put up with VV this long you're tough enough for delivery!! All of us with VV know what a miracle it is to even get pregnant!! I would love to hear all about your experience with biofeedback. I am ready to try it after having little success with creams, hormones, antidepressants, low-oxalate diet, no perfumes in detergent, etc. etc. I feel it's the only thing left besides surgery, which I detest the thought of.
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Commenthello everyone..i have checked in and out of this website when i first started having pain 2 yrs ago and had begun searching for answers myself ...at that point i had been to 7 drs and had no answers...the closest i have gotten to a diagnosis at this point is a biopsy whiched showed "squamous cell hyperplasia" my pain is a constant ache in the same area right inside my vagina with redness and irritation...the pain is at times overwhelming..i do have genital herpes (for 10 yrs) and was wondering if somehow this is related to nerve damage from an outbreak?? i haven't seen much in the guestbook about herpes and wondered if anyone else has a similar experience?? i am between drs until feb. 6 and currently take hydrocodone 3 x daily but i don't think its helping to relieve the pain anymore...i am at my wits end and i appreciate just knowing others feel my pain...prayers to you all...
Commenti'm sorry i forgot another thing i forgot to ask...i also have severe "muscle pain" in by lower buttocks that sometimes goes down the back of my legs (almost like the pain after you have overdone in a workout which is definetly not the case) does anyone else have this pain?? thanks again
CommentKelly, I work very closely with a physical therapist who is just a vagina genius and knows all about vulvodynia. When I finally found her, I made her teach me everything she knows. She talked about a patient who had symptoms very much like yours in terms of pain inside the vagina (I had that) but as well as pain in her buttocks traveling down your leg. Your muscles are too tight and strained and are causing a host of symptoms. I'd recommend a good physical therapist to you if you can tell me where you live.
CommentKelly, I've had VV for over 4 years and painfree since Sept 07. I was treated w/ meds and internal physical therapy which has helped immensley. AND I have right buttock/hamstring tightness that hasn't released with meds, stretching, exercising, massaging, TENS unit, acupuncture, heat etc.. It's annoying more than anything. From all of the stretching, I can touch my toes, do splits, backbends - all sorts of crazy positions that I couldn't do at 6 years old (I'm 35), but I feel tight as hek. I know if I give up, the VV pain will come back. Any suggestions?
CommentI have been researching all over the net about vulvudynia, which I was diagnised with about two years ago. the Nurse practitioner at my doctor 's office prescribed cymbalta which has worked great for me. I have read a lot on the net about patients who have had bad experiences with Cymbalta but my side effects have been minimal. If you haven't tried it, you may want to consult with your doctor to see if it may be right for you. It has been a godsend for me.
CommentDoes anyone know of a specialist for VV in Washington State???
CommentI have had the itch problem too for some time, I used to find kits that helped me at http://www.professortestkit.com but there may be better websites out there with new itch cream serums. Denise
CommentI have had vulvodynia for 4 months. I am on Neurontin, somewhat helping, but want to go the natural route. I have contacted Duke and the Doctor show, Dr. Jan McBarron, whom I have been an avid listener for years. She suggested Vitalogic Women's Balanced Pack twice a day (which I have already been on), and adding Vitalogic Women's formula twice a day and Natren's Gynatren vaginal capsules. She says that vulvodynia is from past trauma, past vaginal infections, and menopause often causes it. If anyone has any questions about these products, please feel free to E-mail me. She also suggests Kegel exercises, and exercise in general for chronic pain.
CommentThanks for your reply Jody - you story sounds a bit traumatic! I am going through a birth centre and planning for a waterbirth so hopefully I won't need much intervention but you never know. Some info on the biofeedback with my experince. As vulvodynia is largely a result of certain muscles being in a constantly contracted state even at resting , it trains you to recognise which muscles these are, learn to relax them and then using dilators helps you stretch them. Kind of like constantly having a cramp in your foot all the time but you are not aware of it - you only know you have a very painful foot! At first appointment I had a special device inserted similiar to a tampon that is hooked up to a machine that reads the electical activity of the muscles ( kind of like an ECG that reads your heart activity). On people with V.V it will be very high as they are constantly contracted and the idea is that you want them relaxed - giving you low readings- (my readings where off the screen of the machine). I was then given a machine to work with at home that taught me how to identify these muscles ( as they are the deep internal ones that you never pay any attention to). Once I had established that and was able to relax enough to bring the readings down to a certain level through concious effort I had to start with dilators that help to stretch those muscles. It was interesting to see how my reading where coming down even without me trying - they naturally started resting at that more relaxed state ( though still higher then a normal person). The Dr I saw taught me how to do internal massage which was very painful but it was amazing to see how with the slightest pressure, the pain was able to be reproduced in areas that seems to be unrelated to the area of focus - it mimiced the vulvodynia pain exactly. Once I became aware of how these muscles interact and how they are linked I became a lot more aware of when i was feeling very tense even if I didn't relise it. I often get very anxious before sex and sometimes I can even feel as these muscles are getting tighter and I can try and now make the effort to relax them. It is not an easy process and it takes a long time but for me I was seeing results in 12 months and considering I had, had this all my life it seemed a short time really. The pain I experinced between sexual contact was almost gone completely and as I mentioned above the pain with sex was also hugely reduced to occasions of actual pain free sex. However - that has all returned with the pregnancy so I am hoping that I can get back to normal after the pregnancy. I know some people have tried biofeedback without much success but you have to be very strict with yourself about doing the excercises and constantly being aware of the activity of these muscles that are normally not under concious control. I work in health so when it was all explained to me it just made so much sense on a physical level which I guess is why I am such an advocate for biofeedback. It makes perfect sense!! I also think though that people with V.V do have an extra sensativity in the vaginal area that either comes as a result of the V.V or as a prelude to the V.V. I have always seems to have them together but I have had it all my life so not sure what came first!
CommentHello, I am a First time post-er. Thank you Dr. Glazer for this site. I have spent years researching my problem (VV) and this is by far the best source of information. Thank to everyone who has posted. I am particularly impressed with Frank--this guy loves his wife and wants to help all of us. Great guy with great advice. Okay--I'll try to add some value to the dialogue. I am 44 years old and single, and active physically. I have never been pregnant. My pain began in 2000, characterized by vestibular redness, soreness, and inflammed glands on the labia minora. I had had yeast infections, but the number and frequency did not seem out of the ordinary. In my 30s, I suffered from bronchitis each winter and often took two to three cycles of antibiotics. Maybe this contributed to the onset of the problem/ pain. My doc in Phx identified an "ulcer" next to my cervix and explained the "discharge" from this wound is causing the pain and that it could last for years. We tried silver nitrate, Flagyll, and a host of other treatments that did not work. For the next several years, I did what I could to "manage" the pain. Once or twice a month I would go to the doc and the nurse practitioner would "paint" the are area with gentin violet, which provided short term relief. Over the years, I would have good days and bad days. THe bad days were right before my period and during ovulation. I moved away from Phx in 2004 and did not seek any help here in NY. (I did not think there was anything anybody could do) In early 2007, the problem seemed to resolve itself. The burning turned in to an itch and then subsided. I thought I was through with the nightmare. I went and saw a OB/GYN who said there was no longer an ulcer although he could see/feel scar tissue. I was pain free until about a month ago, and the vestibule pain returned. I went to the doc who did an exam that turned out "normal." I don't know how this is all going to play out, but what I wanted to report on this site is that both times the pain began I was undergoing the stress of a breakup of a long term relationship. I broke up with a long term partner in 2000, and then another relationship ended in late 2007. I share this because I think STRESS plays a huge part in this affliction -- which I sure most of you knew already. I am an optimist, and I believe I will recover from both the breakup (my doing--I am relieved to have my life back!) and the VV. I have read so much in the last month and the approach I want to take is restoring the balance in my body-including my vag. fluids. I'd appreciate any input on reducing stress. I am the type of person who kids myself in to thinking I am above stress, that I am too strong to be stressed, but obviously that is not the case. I am not interested in anti-depressants. I do exercise regularly (thanks to lidocaine) so I have the physical side of stress reduction covered. My job is not completely stress free but I love what I do and I have a great team and boss. I take Melatonin for quality sleep, but that has not been working too well in the last two to three months. So here are my questions if anyone wants to respond: 1. tips on reducing non-work-related stress 2. has anyone used gentin violet lately, and 3. what is the opinion on zinc oxide cream to alleviate pain/burning? I'll check back and thanks for reading. WD
CommentI've only posted one time before, in Jun 2005. I stopped treatment for VV so that I could try to get pregnant, which I did right away. My baby came via emergency c-section in March 2006. I found the post-delivery bleeding made the VV much much worse and it took quite awhile (until I could start using tampons again) before it started to get better. I'm writing because my baby is not yet two ( a girl ) and it looks like she has VV too. She says it hurts when I try to clean her and see how it looks. Has anyone heard if this is likely to be inherited? My heart is breaking for her.
CommentTo WD & Amanda: WD, welcome to the site and thanks for the kind words. You truly understand why I read and post here, right on all accounts. Amanda, it's very common to project our illnesses or family illnesses on our children. I've had a life long problem resulting from a ruptured appendix during my childhood and everytime one of my daughters had a tummy ache I assumed the worst. Chances are she is either very sensitve in that area or you might be cleaning her too agressively. When my thirteen year old daughter was about one and a half years old she had adhesions of her labia and I thought this was serious and somehow connected with my wife's Vulvodynia since my wife was having some problems with her labia. Our daughter's Pediatrician assured us that this was perfectly normal and that she would outgrow this condition. Subsequent doctor visits proved her to be right and my daughter is fine. My suggestion is to take your little girl for her normal check ups and do your best to shelter her from your problems with this illness. Children have a way of sometimes adopting our problems in an effort to be closer to us. In reading many of the Guestbooks, I can only recall a few women who claimed to have had problems early on in their lives and usually they were connected to some trauma to the area suggesting nerve damage. I am in no way suggesting you are anything but a loving and concerned Mom, so please try to take care of your needs and let your daughter come to you if there is a problem. Best of luck to both you Ladies.
CommentI spent over 40min. on the survey and half of the questions were repeats and I did not know how to fill out the mail info to submit, so I could not.
CommentA wonderful site.Amazing information.And well arranged.
CommentAmanda, I don't want to discount your fears, but I think Frank is right when he talks about children picking up on the feelings/ailments of their parents. VV is not passed down from parent to child, and I've only ever encountered one child, 7 years old, who actually had VV, and she had experienced a lot of trauma to her vaginal area in younger years. Take care.
CommentI would like to respond to the discussion about children inheriting VV...I am truly relieved to hear you both say it is not hereditary!!! My OB/GYN told it WAS hereditary and I have been so scared for my daughter who is 4 to have to go through this hell all her life like I have. I pray you two are right!
CommentTo Jody: I want to clear up any misunderstandings regarding my comments recently. I have not read in these Guestbooks of children of sufferers developing symptoms of Vulvodynia. Since there is no known cause as to why some women develop Vulvodynia, then there is no way of testing or knowing who will have this illness. Depending on the symptoms, some Ladies have thought the onset was connected to trauma to the vulva area at some point in their life, the use of antibiotics, birth control, a sexual encounter, repeated yeast or bacterial infections which caused skin and or nerve damage, possible link to genetics and a whole host of other things including douches and soaps. I think we need to be very careful in how we approach our female children regarding this illness, children hear so much of what we think they don't hear. I simply wanted to make a point of caring for yourself and allowing the child to come to you if she has any discomfort or questions. As a grown man and father, I can tell you if we are not careful we can make our children nutty because of "Our" problems. I hope I've cleared up any misunderstanding and I apologize if anyone thought I said anything to the contrary. Thank you.
CommentI suffered from vulvodynia for 7 years before I found a Physician in Houston who knew what was wrong. Two years ago I had surgery to remove inflamed glands which helped alot to where I could have intercourse with my husband and now I am 12 weeks old, but some itching and burning have occured. I would say my pain level is at a 3, but of course my fear is the bigger the baby gets and the more my hormones change the pain will become greater. I have not found information that helps clear my mind of that happening and being in labor terrifies me even more. Is there anything that you could ease my mind about with these two problems? The unknown drives me to have anxiety and sadness and I am so willing to fight this fear. I ask greatly for a reply, I feel like I've come to the end of my rope to finding answers. Thank you very much , Kim Lake in Longview Texas.
CommentWell the good news is that I'm not alone, apparently. It's a relief to know that I don't need to go mad with worry over what the hell is going on with me! I have seen SIX doctors so far, SIX!!! Because everyone else thought it was thrush/ BV/ you name it !! And I got all sorts of treatments for these things but of course nothing worked. The sixth doc finally diagnosed Vulvodynia (and it was the first time I hear of it). Now that I have done a lot of reading about it, I am relieved to know I am not the only one in the universe who is going through total HELL for no apparent reason. I cannot describe the amount of suffering, the stabbing, the sleepless nights. I've had ENOUGH !!! I'm at my wit's end. I just don't know what to do anymore and I refuse to see any more doctors, I will NOT see ANY MORE DOCTORS!! That's it! But I don't know what to do. So if there is no cure as such, what are we supposed to do? Just sit there and weather it out? I have been given some topical creams and they help a little, but the problem is still present. It gets worse round the time of my period. Apart from this, I have severe IBS and some hormonal imbalances too (recently my periods have become irregular). So my body is weak and responds to allergens in foods and such. I have found that the VV gets worse with sugary foods. When I cut back and eat totally healthily and exercise, it almost goes away. So I guess that's all I can do. And when it attacks, I just need to wait it out. Or something. It is driving me up the wall. And I'm not even sexually active for God's sake. Well it feels good at least to be able to post this and get it off my chest, and that it will be read by women who know exactly how I feel !! I've had enough of ignorant people telling me to get treated for thrush! IT'S NOT THRUSH FOR GOODNESS' SAKE !!!!!!!! What is WRONG with people! It's like no one believes me! And I'm talking about actual medical professionals here! Whatever.
CommentHello Tavo, the main thing seems to be the way they study and treat our vagina. No one of them talks for inflamed nerves, or if they do, they want to operate and cut them. Where is the logis here? Isn't better if the gyneacologists study as well neurology? I don't know if they do it, but it seems they take care only of the surface of the problems, THE SKIN!!! I'm out of my vulvar vestibulitis, thanks to the homeopathy and the understanding I've received from my homeopath. I' ve been cured from inside to out, not from out to in!!! I'm cured and happy, my sexual drive is still too low because of the long time of frustration connected to my sexual wish, but all is gonna go to it's own place, the time will fix it back. Wish you lot's of energy and patience!
CommentChiara, thanks a lot for your reply. You know, the more I think about it, the less I feel this is a gynaecological (sp?) issue and more of a dermatological one. I don't even think Gyneo doctors should be involved in the first place. A lot of them are not aware of this condition! There needs to be more awareness of course, but mainly, the people who need to deal with this conditions are dermatologists. Just because it's in the vulva area does not make is a women's issue. That's my personal opinion. It's surprising how diet can affect the severity of the problem. It's very similar to allergic reactions (which confirms that it's more of a skin condition rather than a female issue).
CommentI had a cystocele for 1 year before my doctor decided that I needed surgery. During that year I started to have severe pain in the vulva. My doctor brushed it off as pain from the cystocele. After my cystocele repair and hysterectomy and incontinence repair, I kept having the same pain. My urogynocologist told me that there was nothing that he could do. I was determined to not live like this. I started doing some research and discovered exactly what I had (Vulvodynia). I called my gynocologist and told her what I suspected and what I wanted to happen. I had used amitriptyline in the past for rebound headaches and nerve pain in my arm and it worked very quickly, so that is what I wanted to try for my vulva pain. She prescribed it over the phone that day. I started on 25mg of amitriptyline and 4 calcium citrate tablets a day. My pain actually started to subside in two days, and within 4 days I had no pain at all. Sometimes I burn if I drink alcohol or do aerobic exercise. I am just hoping that the pain doesn't come back full force. I have heard that it can. I am just puzzled at how much my doctor knew about vulvodynia, but it never crossed her mind that it was what I had. I saw 5 different doctors and they could not figure this out. I guess I got lucky having heard that antidepressants do not work for everyone. I hope this will help others. Martha
CommentTO ALL POTENTIAL POSTERS IN THIS GUESTBOOK: PLEASE THOROUGHLY CONSIDER your decision to post in this guestbook, and consider whether to post with identifying information. This information will be stored on the Internet for a very long time. If employers or potential employers search for your name, they will find you posting if you provided real information. Not to mention significant others or potential significant others, dates, friends, family members, etc. This site will not remove your information from the guestbook. AGAIN, PLEASE BE VERY CAREFUL BEFORE POSTING ANYTHING TO THIS GUESTBOOK. IT CAN COME BACK TO HAUNT YOU.
CommentAnon: That was a good warning, especially considering Internet Trolls who live to harass others. I know it's a personal issue and decision, but I think it's important to have significant others involved.Employers or potential employers have no business on this kind of site but we know they check out all sorts of sites such as "FaceBook". I can appreciate the warnings to young men and women in posting suggestive or controversial pictures and comments because they can give the wrong impression to people who don't know you but have an impact on your life. I really think this illness needs public exposure and media coverage to get necessary attention and funding . Our society needs to grow up and get past the sexual connotations of words such as vulva, vagina, labia and clitoris. These words are a necessary part of any discussion describing and explaining "Vulvodynia". You don't see men or the media hiding the problem of erectile dysfunction and it's received funding, research and effective medications.
CommentHi, Iwas diagnosed with Interstitial Cystitis 10 years ago. I would like to share my thoughts, suggestions, and questions with others.
Commenthttp://www.nytimes.com/2008/01/29/health/29brod.html Hope this link works! It's about time. Of course no mention of any type of "alternative" therapies like chinese medicine or homeopathy but still.
CommentGreat article, lots of information. I hope it encourages more women to seek help, speak out and join this site. I would like to see tv coverage as well, imagine what Oprah could do for this illness if she could keep from giggling at the mention of the word Vulvodynia? Someday!
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CommentI was very happy to read Sharon's postings that a type of physical therapy may help vulvodynia. It makes sense. I feel better after yoga or a brisk walk, which makes me think that stretching or strengthening this area could decrease pain. I also, on occasion, have muscle spasms in the perinium. I have made an appt with a local myofascial release therapist who has worked with other women with vulvodynia to much success. She has taken specific courses in women's disorders, including pelvic floor disfunction. I have to wait to find out if my health insurance will cover it, and get a referral. But I am so excited to try this. Thank you, Sharon, for your suggestions. I will write again after my appt and let you all know how it is working out. As an aside, I feel like I have tried everything else to no avail, such as acupuncture, supplements, Elavil (antidepressants), etc.
CommentTO JODY - re: inheritance of V.V. I had actually been told by the specilist I see that it is not uncommon for women with V.V to find out a close female relative also had it ( mothers or grandmothers). I was diagnosed about 4 years ago but my pain memories date back to at least 3 years of age ( and I was not sexually abused), so it does occur at very young ages ( known as Primary Vulvodynia as in it pre-dates any sexual activity). My Mum doesn't have it though or my sister and I am NOT asking my Grandma!!
CommentI was wondering if anyone had used the Epi-No device that is designed for use during pregnancy to prevent tearing. I know of someone women with V.V who used it and recommened it - anyone else? I currently use biofeedback and dialators however I am 7 months pregnancy and I think the Epi-No would be much easier to use!!
CommentTo Cath: Two things come to mind when I read your reluctance to ask your Grandmother about Vulvodynia. The first was when my wife and I were trying to find out if anyone in either of our families had lost a child to the genetic illness of infant daughter had and died from, this was fifteen years ago and people rarely talk about such personal things. The illness was very rare and may have been misdiagnosed in other infants so it would be difficult to confirm in any case. The other incident of course was my wife's sympotoms of Vulvodynia, through her mother she tried to collect as much family history as possible but there too it is such a personal issue and even now women are reluctant to discuss this matter. I know it's easy for me to say try and be open to sharing this problem with friends and family in the hopes of bringing it out of the shadows and into more of a public light, but I'm not a woman or sufferer. Hopefully future generations will not have to suffer from this painful illness, but at least there is better record keeping and discussion. Take care.
CommentHello everybody. I was diagnosed with vestibulodynia at a local GUM clinic around 8 months ago. Apparently this is different to vulvodynia in that it describes provoked pain (pain at light touch) whereas vulvodynia is unprovoked pain (this is according to the vulvar pain society, which is a UK-based organisation). I was wondering whether anyone else had something similar, as many of the people here seem to experience pain a lot of the time. I only really get symtoms during sex, it seems that no matter how much lubricant is used I have a severe burning pain at the entrance to my vagina that feels as if I'm being over-stretched. If I continue having sex, this pain usually continues all the way through, but sometimes subsides slightly. I'm absolutely fine with a carefully inserted finger, and feel no pain when I wear tight jeans or anything like that. I was given a lidocaine cream (EMLA) to use 20 minutes before sex, and this allows me to have actual intercourse totally pain free. However, minutes after my boyfriend withdraws I feel a horrible burning pain and have to wash myself with cold water (no soap of course!) and then press a cold flannel against my vulva for ages. I then have some discomfort for the whole of the next day. I've started using a lubricant that contains vitamin E and aloe vera, but it doesn't seem to make much difference. I'm happy that I can have intercourse again pain-free, but my sex drive is very low as I dread the pain afterwards. I've been with my boyfriend since I was 15 (I'm 20 now), and he's been pretty understanding since I started having these problems last year, but we'd previously enjoyed a great sex life and I just want to be back to normal again. I attribute the start of my problems to a yeast infection which I developed after taking a course of antibiotics, but I didn't treat it well and now wish I had. I'd bever had thrush before, and it was a little while until I realised what was wrong. After diagnosing myself, I treated the probem with cannesten cream, which cleared my symptoms for 2 weeks, but they then came back. I continued to use the cannesten cream until my symptoms had gone, and then for a little while afterwards. It was after this that I started developing the problems during sex, but I still waited 3 months before going to the GUM clinic. I was initially diagnosed with thrush (again), and told that I was inflammed and had 'hairline cracks' in the entrance to my vagina. The Gyn I saw gave me cannesten HC (cannesten cream with a steroid), and a tablet to take. This did nothing for my symptoms during sex, and I went back after a month and saw a different doctor. She poked at bits of my vulva with a cotton swab and asked me if it hurt (it did) and then diagnosed me with vestibulodynia. I'd already seen this website before then, and nearly cried when she told me because it seemed like such a chronic disease. She told me that its actually quite common, and usually clears up by itself after a couple of months. She also offered me amitriptyline if it didn't clear up in 3 months, but as a medical student I've heard about the side-effects of this and am reluctant to use it myself. I just wondered whether anybody else experienced anything similar, and whether you have any tips you can share on being pain-free during and after sex. Thanks.
CommentHello everybody. I was diagnosed with vestibulodynia at a local GUM clinic around 8 months ago. Apparently this is different to vulvodynia in that it describes provoked pain (pain at light touch) whereas vulvodynia is unprovoked pain (this is according to the vulvar pain society, which is a UK-based organisation). I was wondering whether anyone else had something similar, as many of the people here seem to experience pain a lot of the time. I only really get symtoms during sex, it seems that no matter how much lubricant is used I have a severe burning pain at the entrance to my vagina that feels as if I'm being over-stretched. If I continue having sex, this pain usually continues all the way through, but sometimes subsides slightly. I'm absolutely fine with a carefully inserted finger, and feel no pain when I wear tight jeans or anything like that. I was given a lidocaine cream (EMLA) to use 20 minutes before sex, and this allows me to have actual intercourse totally pain free. However, minutes after my boyfriend withdraws I feel a horrible burning pain and have to wash myself with cold water (no soap of course!) and then press a cold flannel against my vulva for ages. I then have some discomfort for the whole of the next day. I've started using a lubricant that contains vitamin E and aloe vera, but it doesn't seem to make much difference. I'm happy that I can have intercourse again pain-free, but my sex drive is very low as I dread the pain afterwards. I've been with my boyfriend since I was 15 (I'm 20 now), and he's been pretty understanding since I started having these problems last year, but we'd previously enjoyed a great sex life and I just want to be back to normal again. I attribute the start of my problems to a yeast infection which I developed after taking a course of antibiotics, but I didn't treat it well and now wish I had. I'd never had thrush before, and it was a little while until I realised what was wrong. After diagnosing myself, I treated the probem with cannesten cream, which cleared my symptoms for 2 weeks, but they then came back. I continued to use the cannesten cream until my symptoms had gone, and then for a little while afterwards. It was after this that I started developing the problems during sex, but I still waited 3 months before going to the GUM clinic. I was initially diagnosed with thrush (again), and told that I was inflammed and had 'hairline cracks' in the entrance to my vagina. The Gyn I saw gave me cannesten HC (cannesten cream with a steroid), and a tablet to take. This did nothing for my symptoms during sex, and I went back after a month and saw a different doctor. She poked at bits of my vulva with a cotton swab and asked me if it hurt (it did) and then diagnosed me with vestibulodynia. I'd already seen this website before then, and nearly cried when she told me because it seemed like such a chronic disease. She told me that its actually quite common, and usually clears up by itself after a couple of months. She also offered me amitriptyline if it didn't clear up in 3 months, but as a medical student I've heard about the side-effects of this and am reluctant to use it myself. I just wondered whether anybody else experienced anything similar, and whether you have any tips you can share on being pain-free during and after sex. Thanks.
CommentTo T123: My wife had many yeast infections during our early years together and to our ignorance and my strong sex drive we often had sex in spit of the infection until we knew better. I'm sure the combination of the two (yeast and sex) lead to tissue inflamation and eventually tissue damage. I would recommend doing whatever it takes to reduce the incidence of yeast overgrowth. Read up on this problem, alter your clothing, diet and include your boyfriend because he can reinfect you as well. Even certain things used as lubricants can cause yeast to flourish. I wish you the best of luck in resolving this problem.
CommentI started getting the symptoms of vulvodynia almost two years ago. I had taken an antibiotic for a sinus infection and thought I developed a yeast infection from the antibiotic. I went to the gynecologist several times and was repeatedly treated for yeast, even though it only showed up on a lab test once. The doctor did not know anything about vulvodynia, but his nurse RNs knew enough to try giving me Amitripiline. I thought that the Amitripiline helped for awhile, but the symptoms returned. My symptoms are burning, stinging and rawness. I usually wear my pants a size bigger and I love Victoria Secret no-show panties/cottom hiphuggers (I also buy them a size bigger because they shrink). The hiphuggers stay in place and do not ride up the crotch. My symptoms also occur in the anal area like some of the other women. The worst part for me is the lack of a relationship. I was single when it started and I don't dare get involved with anyone because a new relationship would entail very frequent sex and I know I cannot handle that. It would not be fair to get involved with someone with this limitation. I miss having a great sex life, but miss the emotional comfort of a relationship more. This condition can also cause depression and I tried antidepressants (Effexor and Cymbalta). I was allergic to Cymbalta and I have read that Effexor has very horrific withdrawal effects so I got off of that also. Neither one helped the vulva burning. I stopped pursuing a cure until I mentioned the problem to my primary care physician who was absolutely convinced with one glance that I had lichens scherlosis. I did some research of my own and did not think that I did, but I got a biopsy from a dermatologist to be sure. I did not have lichens schlerosis. I then saw a really great female neurologist who did an MRI to make sure my problem was not structural. She believes that the experience with yeast triggered an overreaction of my nerve endings and she asked me if I would like to try Neurontin. I took my first dose today and will let you all know if it works for me. I would be interested in more information on natural treatments if anyone would like to email me. I have tried Vitamin D. I would be interested in more information about he pelvic floor exercises. They would be beneficial even if they did not relieve pain, for the bladder. I would also be interested in knowing if Neurontin has helped anyone. The interesting thing is that it seems that I, like some of you, am prone to "mystery illnesses." I had irritable bowel for about 10 years and cured it myself by quitting nicotine, caffeine, alcohol and drinking Metimucil everyday. If only I had known sooner how easy that was. I also had chronic fatique syndrome for two years and finally quit pursuing a medical cure and tried to remember the things I was doing before it started and one was stopping the birth control pill because my then husband had a vasectomy. I have stopped feeling sorry for myself along time ago, but I think that traditional medicine can only help so much and after that it is up to you. I found with all of these ailments, exercise and meditation certainly has not hurt. As far as the vulva pain, I also use a cold pack to sit on when I watch movies at home and I have a heated mattress pad which feels nice when I sit in bed and read or meditate. I hope you all find something that works for you, or even better, I believe this malady can disappear as mysteriously as it appeared.
CommentMichelle, I tried to email you, but your address doesn't work. I just wanted to tell you that I was diagnosed with Lichen Sclerosis many years ago by biopsy. The good news is that my L.S. is in remission. The bad news is that I have Vulvar Vestibulitis. I used to have 24/7 burning and was going out of my mind. I used Clobetasol ointment for about 2 years and it got rid of the burning. Nowadays, I don't have much burning but more of an irritatation, soreness and swelling sometimes. Anyway, if you want to talk, feel free to email me. sdsue123@san.rr.com
Commenthi everyone...i have posted a few times and love that everyone here understands my pain and i want you all to know that i feel yours and say thank you..this site has helped me feel somewhat "sane" when i have felt so sad and angry and confused by this pain the last 2 yrs...anyway...i wanted to ask...i finally (8 drs later) had a dr. today mention the work "vulvodynia" FIRST on his own ...w/o me cueing him ( i have learned to try to find out what these guys/girls know before i try to explain the whole thing to them) that way i know who knows I'M NOT CRAZY...anyway...it's a postive thing today..so i have hope for help this time...my question is..he started me on Lyrica?? i wondered it anyone had tried this med..and experiences?..again thank you all...and keep being positive!!! kelly
CommentThis is to Sue. I'm sorry I actually typed my e-mail address wrong. Please feel free to write if you like. And also to Kelly, Lyrica is the second drug my neurologist suggested I could try if Neurontin does not work. I think it is a similar, newer drug. She said she wanted to try Neurontin first because she felt she may have to fight the insurance company for me to try Lyrica. In other words, if Neurontin does not work, the insurance company would probably approve the Lyrica. The Neurontin has a side effect of tiredness and slight dizziness. She wants me to start taking it once and day and build up to three times a day (every six hours). I took a dose at 6:30 last night and 12:30 today and have been able to deal with a son with the stomach flu and clean the house and do laundry without falling asleep. Sitting at my desk on Monday might be another story. Let us know how Lyrica works.
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Commentoops sorry don't know what happened i thought i sent but didn't....anyway....thank you michele for replying...so at least i know lyrica has been suggested to someone else...i tried neurontin and didn't get much relief...i have hyperplasia/vulvodynia of unknown origin pain ache, burning...the usual oh and genital herpes which caused nerve damage...therefore the lyrica for postherpetic pain...so..i've been on it 2 days now...call it desperate for help or just positive thinking but i almost swear the pain is a little better today...so thats the thought i'm going with...i'll keep u updated..hope the neurontin helps for you...at least we're not giving up!!!!! hanging on until a cure!!! prayers to u...kel
Commentoops sorry don't know what happened i thought i sent but didn't....anyway....thank you michele for replying...so at least i know lyrica has been suggested to someone else...i tried neurontin and didn't get much relief...i have hyperplasia/vulvodynia of unknown origin pain ache, burning...the usual oh and genital herpes which caused nerve damage...therefore the lyrica for postherpetic pain...so..i've been on it 2 days now...call it desperate for help or just positive thinking but i almost swear the pain is a little better today...so thats the thought i'm going with...i'll keep u updated..hope the neurontin helps for you...at least we're not giving up!!!!! hanging on until a cure!!! prayers to u...kel
CommentJUST RECIEVED THIS FROM THE NATIONAL VULVODYNIA ASSOCIATION!!!! Maybe we will FINALLY get some big media attention... Dear NVA Friend, Producers at The Oprah Winfrey Show are working on a possible upcoming show on vulvodynia. If you are a single woman in your 20s or 30s who is worried that you may not be able to get married or have children in the future because of your vulvodynia and/or a non-Caucasian women of any age who is willing to be on the show, as soon as possible, send an email to chris@nva.org with the following information: - Name - Age - Ethnicity - Summary of your history with vulvodynia, i.e., When were you diagnosed? How many doctors did you visit before receiving a correct diagnosis? Have any treatments helped you? Is your vulvodynia better, worse or the same? - How has vulvodynia affected your ability to pursue a career and/or engage in social activities? How has vulvodynia affected your sex life, marriage or relationships? - Contact information - phone number and email address - Current photo (attachment) - Statement that you give NVA permission to forward your contact information to producers at The Oprah Winfrey Show. Please try to limit your summary to 1-2 paragraphs.
CommentOnce again, I'm posting to see if anyone else is from San Diego and if you have a good Gyno. I'm looking for one that isn't associated with Scripps and I don't belong to Kaiser, so I can't see one of their Drs. I live near Poway and although there are several Gynecologists here, they either won't or don't see Vulvodynia patients. TIA for any help. Sue
CommentOPRAH?: If that info about a possible Oprah show was not a cruel joke it was certainly an insult of sorts. In the years my wife has been suffering from Vulvodynia and I've been reading and posting here, serveral things seem to have come to my attention. They are that married women and women in relationships seem to be more worried or concerned through their posts on this site of losing their relationships due to problems associated with Vulvodynia, than single women. Not that single women do not suffer, but only that they do not have the added stress of dealing with a current relationship! Secondly, from all I have read about sufferers I believe statistically Vulvodynia affects fair skinned caucasion women the greatest, with non-caucasion women in the lowest percentage of sufferes. Lastly, that Oprah laughed at the mention of the word "Vulvodynia" several year ago when one of the Dr. Bergman sisters tried to discuss this illness on a show Oprah did about Sex and gynecological issues. I think any attention on this illness is better than none, but to limit it to single, non-caucasion women i just plain stupid. Maybe it's a start, so I hope I'm wrong and I hope some good comes from this show if it ever comes to pass. Best of luck to all.
CommentHello! I live in the UK and was diagnosed 5 years ago with genital psoriasis. My skin constantly split (down there) and was excrutiatingly painful. I was sent to a clinic with 3 doctors, one a dermatologist and one a gynaecologist. Starting with hydrocortisone and ending with Lanocane and Betnovate, my skin gradually got used to each steriod cream and they did not work well. The gynaecologist suggested a modified Fentons procedure in day surgery; however another surgeon was there on the day, he did too much surgery and I was in terrible pain and the area did not heal, had to got back into hospital 4 months later. For a year after, could not feel much, esp, when in bed with husband, then when I went for walks I began to feel sharp pains like pins and needles sticking into the skin. When I looked, there was nothing to be seen except uneven skin from the botched surgery. This pain now comes and goes. Sometimes it's like sandpaper rubbing against the skin; sometimes just red and sore; sometimes dry. Can anyone suggest what I put on the skin? Have been using vasoline or calendula cream as a barrier.
CommentI live in NW Ohio.Is there any support groups in the area or would anyone be willing to join. I have had Vulvodynia for over 1 year now. I can't imagine living with this for many years. Dr. just started me on Lycira, its seems to be helping. Is anyone else on Lycria and if so has it helped. Thanks and God Bless!
CommentI agree that it's stupid that Oprah is specifically looking for "non-white" and single women with vulvodynia. I think we should all IGNORE that part of it and contact whoever it is we need to and tell our stories anyway!! It's US that is always teaching everyone else (including doctors) about this horrible condition so why should Oprah be any different??? It's ALL UP TO US to get ourselves better and to get the word out. Hopefully one day that won't be the case. Maybe Oprah can deal with it like an adult this time and help us bring about some awareness and help.
CommentTo agree: I wrote to the Oprah show in their "contact us", "Idea for a show" section. I said I hoped they would do a show on Vulvodynia and to please make the panel a diverse group. I explained about the same things I mentioned in my last post about the statistics and my belief that women who were married or in relationships were probably more stressed out dealing with this illness than sigle women who could focus on their health without the complications of a mate. I don't know if any of this lead to a show but "Any" publicity on the scale of an Oprah show would be a help to get the word out. I asked my wife if she would be willing to appear on the Oprah show and she said "No"!. So I said if I had to I would go with a stranger. Trust me if they should give me the opportunity, I will go and do my best to have my wife with me. I told her if not for herself she should make the effort for our daughters or possibly granddaughters someday, because if this illness is not properly researched and cured many more will suffer.
Commenthello all...i also was thinking about the married/single issue the other day for some reason...i am married 11 yrs and have been in extreme pain for 2 yrs...my husband is wonderful and patient and kind (especially considering he doesn't have sex) hardly ever...anyway i was thanking God the other day that i have him and that i am not single and trying to figure out how in the world i will ever be able to explain this vulvodynia situation to someone new in my life...once upon a time i had to tell my husband that i had genital herpes when we were dating (oh how hard)...i can't even imagine how hard it would be to explain something so mis (un) understood, to someone new in my life...how blessed i am to have someone who understands...also to kathryn...i started taking Lyrica 3 days ago and as i mentioned ...maybe just wishful thinking but...i think today is better already...thanks everyone and hang in there!!!!!!!.
CommentI haven't posted here in quite some time. My last update was about my using RepHresh. I am still feeling well. Just some mild irritation for a day or so after intercourse (not everytime though). I am presently seeing a chiroprator because of back issues that have started bothering me. I had my 3rd appointment today and am sooooo sore. Back and muscles hurt badly after he adjusts me and he does a deep tissue massage. I did learn something on my first appointment that I have not discussed with him yet. My lower 5 vertabrae are twisted and he said it is causing the pain in my upper back. He has this little board in his rooms that show different vertabrae and nerves etc. It lights up. Well, he lit up the lower vertabrae that are bothering me and it lights up areas of the body that are affected by these vertabrae being out of alignment. Well ladies, one of the areas that can be affected is the genitals!!!!! I couldn't believe it. It doesnt hurt to have an x-ray of your back. And it certainly wouldn't hurt to find out that back problems just might be a cause of your pain, I feel mine is more than one thing. The RepHresh definately helps me. But I started thinking and then my moom called me as well adn brought it up. I was in a car accident about 6 months before I got VVS. I have been in many car accidents but this time I had pain in my back and neck, but it went away after a month so I never got treated for it. It could be a coincidence, or it could be a cause of my VVS. I am in early stages of my chiro treatments so if I ever get completely cured I will post it here as I do things that I find help me. It is just better for my sanity that I don't read here everyday like I used to. It helps me to not dwell on my disorder to not read and think about it all day, every day. I will be posting a separate post from the NVA that I got today. Good luck to you all. My heart goes out to you.
CommentI received this e-mail today from the NVA. I hope this happens. If so then all of our letters to Oprah have finally been heard ----------------------------------------------------------------------------------------- Dear NVA Friend, Producers at The Oprah Winfrey Show are working on a possible upcoming show on vulvodynia. If you are a single woman in your 20s or 30s who is worried that you may not be able to get married or have children in the future because of your vulvodynia and/or a non-Caucasian women of any age who is willing to be on the show, as soon as possible, send an email to chris@nva.org with the following information: - Name - Age - Ethnicity - Summary of your history with vulvodynia, i.e., When were you diagnosed? How many doctors did you visit before receiving a correct diagnosis? Have any treatments helped you? Is your vulvodynia better, worse or the same? - How has vulvodynia affected your ability to pursue a career and/or engage in social activities? How has vulvodynia affected your sex life, marriage or relationships? - Contact information - phone number and email address - Current photo (attachment) - Statement that you give NVA permission to forward your contact information to producers at The Oprah Winfrey Show. Please try to limit your summary to 1-2 paragraphs. Thanks very much, Chris
CommentI am writing from Canada - and need your help! I have been dealing with what I believe to be Vulvodynia now for 5 years and cannot find a doctor who can help me. While I am generally very proud to be a Canadian, I am completely disappointed at the lack of information and knowledge in Canada available to women. I have seen doctors on both the east and west coast of this country, and have yet to find a single one who knows more about this than I do. From age 16-23, I had increasingly frequent bladder infections, for which I was always prescribed antibiotics. I have been told over and over that there is no relationship between oral contraceptives and bladder infections, but my mother, like me, experienced chronic bladder infections while on the pill. I stopped taking the pill at 23 and have not had a single bladder infection since. When I was 23, I was prescribed 5 antibiotics in 3 months for bladder infections. After the 5th dose of antibiotics, I was left with a constant vaginal burning. I returned to my GP who suspected I had a yeast infection from the antibiotics; however, the swab for yeast came back negative. Over the next two years, I visited my GP numerous times, two gynecologists, and a urologist, all in Halifax, Nova Scotia. I was checked for yeast, bacteria, STDs, bladder function, and kidney function, and all doctors suggested that there was "nothing wrong with me." I recall one meeting with my GP where I realized that she seemed to think I was fabricating the whole thing - I was devastated. I felt completely helpless and alone. After 2 years of suffering, I experienced one year symptom free! However, I awoke near the end of my wonderful symptom free year mortified that that familiar burning feeling had returned. For the last two years, I have again suffered with vaginal burning. I have visited two other gynecologists in the last two years, one in Calgary, Alberta and one in Auckland, New Zealand, and have still not found a doctor who knows anything about Vulvodynia. In total, I have now seen 4 General Practitioners, 4 Gynecologists, 1 Urologist. I am desperate to find a doctor who specializes in Vulvodynia - can anyone help me with this? Ideally, I would like to find a doctor in Canada. My vulvodynia cycles; I have good days and bad. I have read, in an American Family Physician journal: http://www.aafp.org/afp/990315ap/1547.html that there are sub-groups of vulvodynia, some which have cyclic patterns. I have followed low-sugar/low-yeast diets, low-oxalate diets, and taken long term antifungals. To date, nothing has given me quick relief of my symptoms. I seem to have had 3 acute points of onset of my symptoms: - one being the initial onset 5 years ago following excessive antibiotics - one being two years ago following my symptom free year - I cannot seem to identify a major trigger point for this recurrence. I was in the midst of a major life change: moving cities and changing jobs. Perhaps stress was related? - and one being in January 2008. My symptoms are currently quite severe. The only thing I have picked up in my recent reading is the possibility of irritation by oxalates. I normally eat extremely healthy; however, during this past Christmas season, I was eating much more chocolate and nuts than normal - all of which are listed as high oxalate foods. I find that my symptoms worsen during my period. I don't find that I suffer from added pain due to touch. My symptoms are perhaps best described by saying that it feels as though someone poured acid in my lap. The pain is not internal. The only medication I have tried is Diflucan. About 10 months after the second onset, I was prescribed Diflucan: 1 pill/day for two weeks, followed by 1 pill/week for a year. Throughout this time, my symptoms did seem to improve; however, I was still on the Diflucan when my symptoms returned last month leading me to wonder if the Diflucan actually did anything? Given that my symptoms eventually (after 2 year) subsided after the initial onset, perhaps it was just concidence that they subsided the second time. I just visited a new GP this morning in hopes that he might know something about Vulvodynia. When I asked him about it, he told me that it is not a medically recognized condition, and that this is the reason it is so poorly understood. I nearly screamed at him. Instead, I cried at my frustration. Is there anyone in Canada that knows anything about this condition??? Vulvodynia is something that is greatly affecting my life. I was married just 5 months ago to my wonderful husband, have a great job, and love my life. However, Vulvodynia affects me daily and I struggle, at times, to stay positive and enjoy my life. Having been to doctors from the East coast to the West coast of Canada, and even to New Zealand, I find it completely devastating that I have not found a doctor who knows anything about Vulvodynia. I wonder how many other women are out there suffering, not knowing what is wrong with them, having no one to talk to, and maybe even beginning to believe that they have a psychological issue (which is not true in my case.) Suffering from Vulvodynia is affecting my sex life, I sometimes avoid social outings with friends because I just want to go home and lay down when I am in pain, I worry about planning holidays because I do not know how my symptoms will be at that time and worry about being in an unfamiliar place and suffering, I am often distracted while at my job (I spent 7 years in university and have a Bachelors and Masters degree in Mechanical Engineering) due to severe pain, and, in addition to all of this, I suffer emotionally and mentally because I cannot find a doctor who knows anything about Vulvodynia. This morning, I read the article recently published in the New York Times on Vulvodynia. I think it is wonderful that this condition is finally getting the attention it deserves. The more we speak about this and make ourselves heard, the more the medical profession will begin to listen and research this condition. I have read that some women have used antidepressants, while others have used anti-inflammatory medications or muscle relaxants. Is there a method to choosing one over the other? The GP I saw this morning, wrote me a prescription for Elavil. I noticed that some other women have tried this medication – how long did you have to take it before you saw some improvement? If anyone can direct me to a doctor in Canada that specializes in Vulvodynia, I would be forever grateful. If I cannot find somebody, I may elect to travel to the U.S. to see a doctor, though I would have to pay entirely out of pocket. Also, I would love to hear back on my questions regarding Elavil. It’s nice to know there are others out there dealing with this – it makes me feel less alone.
CommentTo Candi:Nice to see you posting again and becoming known to the ladies who are new to the site. You were always agressive in your approach to this illness. The issue of the Oprah Show was discussed briefly a few posts back. I thought such a show with only single, women of color was very limiting and that a diverse panel would more accurately represent the victims of this mystery disease. I wrote to the show with my concerns, but as I posted here any publicity is better than none. Look forward to reading your informative posts. Take care.
CommentHello Friends, This is my first posting, so I want to thank you all for the furtherence of my VV education! A thank you as well to Cr. Glazer for this very valuable site. To Jody, there is a vulvar pain specialist in Seattle a UW: David Eischenbach. I've not seen him yet (April), but you might give the office a call 206-527-2800. I have no feedback on his manner, etc., but have heard throught the grapevine that he's good. I'm 47 and have been dealing with vulvodynia for over ten years; this includes the usual round of countless doctors ("you need a shrink", "let's do some surgery", "frigid"). I finally found John Willems at Scripps in San Diego where I used to live. He was a big help to me, but his NP is phenomenal – patient, kind, educated. However, I have moved to the Northwest about three years ago and am having some real "issues" here with the V-word. I'd been doing well until about the last year . Previously, the greatest help had come from the low oxalate diet (the cookbook from the Vulvar Pain Foundation has the amounts off oxalate for given foods and is a tremendous resourse) and biofeedback. I had a very long period – with some flare-ups of course – of normal, pain free days until this past year. In Dec., a GYN in Seattle discovered a yeast overgrowth (I thought my symptoms were from the vulvodynia and hormonal changes as I didn't have the more common symptoms of yeast infection). I now believe I've had this infection for about a year! I'd been to the doctors here several times, but I live in the sticks where they really won't do cultures, so I think they simply couldn't figure it out and therefore dismissed me. I was, of course given Flagyl last year. and haven't been the same since then – an old, familiar story it seems. Since the yeast culture (Dec. '07), I've taken diflucan (2 pills) with no resulting change. I was then recultured for yeast...heavy overgrowth of candida! After conversing with my doc in Seattle and my ND I'm on a 12 day course of diflucan, but I feel no better. In fact I feel worse in my "nether regions". The diflucan seems to help for a couple of days, then the symptoms come back. Lots of stinging and burning, and a great deal of frequency and urethral spasms (I was diagnosed years ago for IC as well). I'm now on an "anti-candida" diet with only 2 days left with the diflucan; I'm getting worried about how to proceed now. I'm feeling very distrustful of doctors as it seems they want to throw diflucan and Premarin at me. I also understand that diflucan can sometimes cause the vulvo. symptoms to really flare and feel a bit frightened. I plan to continue with the remaining two days of pills, then go for another culture and make sure that I'm dealing with candida albicans and not another kind of yeast, but...what next?! I have 3 different kinds of vaginal suppositories (Acidoph. with vitamin E, Boric Acid, and E3) in the fridge and can tolerate none of them! Yogurt isn't doing the trick either. Everything that I've used internally seems irritating, so I'm a bit concerned about using nystatin suppositories. I have the Yeast Connection Book and Golan's book Optimal Wellness, both very helpful... Can someone please help me figure out what to do if and when the upcoming culture comes back for yeast? I am really at a loss, have not had relations with my WONDERFUL husband of 24 years for ages, and don't know where to turn. It seems that when I think I have yeast, its the vulvodynia, yet when I finally learned that my discomfort was due to the vulv., it turned out to be yeast! I know there are a lot of knowledgable, informed people out there with – unfortunately – a great deal of experience. I'm hoping that someone can set me on the right track! Thank you!
CommentHello Friends, This is my first posting, so I want to thank you all for the furtherence of my VV education! A thank you as well to Cr. Glazer for this very valuable site. To Jody, there is a vulvar pain specialist in Seattle a UW: David Eischenbach. I've not seen him yet (April), but you might give the office a call 206-527-2800. I have no feedback on his manner, etc., but have heard throught the grapevine that he's good. I'm 47 and have been dealing with vulvodynia for over ten years; this includes the usual round of countless doctors ("you need a shrink", "let's do some surgery", "frigid"). I finally found John Willems at Scripps in San Diego where I used to live. He was a big help to me, but his NP is phenomenal – patient, kind, educated. However, I have moved to the Northwest about three years ago and am having some real "issues" here with the V-word. I'd been doing well until about the last year . Previously, the greatest help had come from the low oxalate diet (the cookbook from the Vulvar Pain Foundation has the amounts off oxalate for given foods and is a tremendous resourse) and biofeedback. I had a very long period – with some flare-ups of course – of normal, pain free days until this past year. In Dec., a GYN in Seattle discovered a yeast overgrowth (I thought my symptoms were from the vulvodynia and hormonal changes as I didn't have the more common symptoms of yeast infection). I now believe I've had this infection for about a year! I'd been to the doctors here several times, but I live in the sticks where they really won't do cultures, so I think they simply couldn't figure it out and therefore dismissed me. I was, of course given Flagyl last year. and haven't been the same since then – an old, familiar story it seems. Since the yeast culture (Dec. '07), I've taken diflucan (2 pills) with no resulting change. I was then recultured for yeast...heavy overgrowth of candida! After conversing with my doc in Seattle and my ND I'm on a 12 day course of diflucan, but I feel no better. In fact I feel worse in my "nether regions". The diflucan seems to help for a couple of days, then the symptoms come back. Lots of stinging and burning, and a great deal of frequency and urethral spasms (I was diagnosed years ago for IC as well). I'm now on an "anti-candida" diet with only 2 days left with the diflucan; I'm getting worried about how to proceed now. I'm feeling very distrustful of doctors as it seems they want to throw diflucan and Premarin at me. I also understand that diflucan can sometimes cause the vulvo. symptoms to really flare and feel a bit frightened. I plan to continue with the remaining two days of pills, then go for another culture and make sure that I'm dealing with candida albicans and not another kind of yeast, but...what next?! I have 3 different kinds of vaginal suppositories (Acidoph. with vitamin E, Boric Acid, and E3) in the fridge and can tolerate none of them! Yogurt isn't doing the trick either. Everything that I've used internally seems irritating, so I'm a bit concerned about using nystatin suppositories. I have the Yeast Connection Book and Golan's book Optimal Wellness, both very helpful... Can someone please help me figure out what to do if and when the upcoming culture comes back for yeast? I am really at a loss, have not had relations with my WONDERFUL husband of 24 years for ages, and don't know where to turn. It seems that when I think I have yeast, its the vulvodynia, yet when I finally learned that my discomfort was due to the vulv., it turned out to be yeast! I know there are a lot of knowledgable, informed people out there with – unfortunately – a great deal of experience. I'm hoping that someone can set me on the right track! Thank you!
CommentTo Elaine: You have found a good place for information and compassion. My wife who is 48 has had numerous yeast and bladder infections throughout our 25 years together. The boric acid suppositories seem to help restore the proper acidic balance to bring the yeast under control, she used one in the morning and one at night for about two weeks at a time. Diflucan works great for her. She has not followed the yeast free diets but I know they help many people women and men alike who have issues with yeast. I've heard that problems with yeast can also be an indication of other medical conditions. I absolutely believe having sex too frequently has caused a number of my wife's yeast infections, I read on a Women's Health site years ago that semen can upset the Ph of the vagina and lead to an infection. I also agree that it is helpful to identify the specific strain of yeast which few dr.'s do, even though many of the medicines have informational paperwork which suggests doing that. There was a time when my wife was using several medicines inserted into the vulva and she finally said "Enough" and stopped all of them, said they just made her feel yucky all the time. I've read over and over again that the vagina is "self cleaning" and it makes sense that too much medicine, artifical lubricants or anything else will disturb that delicate balance and make things worse. I wish you the best in treating this problem and please post your results to help others. Take care.
CommentElaine and others: I truly empathize with your suffering. I have been battling vulvodynia for almost two years. For five months I was misdiagnosed -- told to "stop worrying, it'll go away." Yeast cultures kept coming back negative. I was miserable and many nights I would pray that I would fall asleep and never wake again because the pain was that unbearable. I told my husband that I felt like someone took my vagina, turned it inside out, scrubbed it with a brillo pad, stuck it back in, and then gave me the brillo pad to wear as a pantyliner. Other times I felt like I had a clothespin hanging off my inner labia. Sometimes I would feel like I had battery acid splashed down there. Other symptoms included feeling like I had little critters crawling inside my vagina and in my pubic hair, feeling pressure in my rectum almost as if a finger was stuck up inside, feeling like I had a yeast infection on the outside, burning/stinging at the vaginal entrance closest to my rectum, feeling "dry" right inside my vagina but only on the one side, and feeling as if I were allergic to my vaginal secretions. I was lucky if I had two "good" days a month. A friend called one day and told me that I needed to see a specialist, and I looked down at that very moment and saw the word "Specialist" on a paper I had just printed out for job research, and, upon further inspection, this doctor specialized in vulvovaginitis and yeast infections and is one of only a handful of specialists on the East Coast who deals specifically with this condition. I immediately made an appt. I was loaded with YEAST SPORES -- lots and lots of yeast spores. In fact, I was one of the worst cases they have seen. How my other doctor missed this for five months I will never know. From my understanding, most doctors are looking for YEAST INFECTIONS, not YEAST SPORES. They are looking for hyphae, which the spores are just mere buds. Also, most doctors swab on the inside and don't bother swabbing outside areas so miss the spores. It makes me wonder how many people are being misdiagnosed and how often this is being overlooked. The cause of my problem was not being treated long enough with strong enough medications to treat my initial yeast infection. Another interesting fact I learned is that most times the yeast spores cannot be typed to determine which anti-fungal will work. When the culture is sent out, unfortunately the vaginal secretions inhibit the growth of the spores in order for it to be typed. If you talk to just about anyone in the medical field, you will find that yeast spores are extremely difficult to kill off, especially the drug-resistant yeast spores. Treatment includes long-term antifungal therapy and is not the same for everyone. What works for one person does not necessarily work for another, and it is basically trial and error until they find the comination that works for you. It was recommended that I start probiotics immediately to help boost the "good" bacteria. I was then placed 200 mg of Diflucan every other day for two months alternating with 250 mg of Lamisil on the alternating days that I did not take the Diflucan. This continued for 2 1/2 months. When I returned to see the doctor, the yeast spores did not even budge and obviously were resistant to those medications. During this time, I was prescribed various topical anti-fungal creams, Mycolog ointment to try as well as Lotrisone, but these only made my symptoms worse. During this time, I tried accupressure, and, although I felt good during the treatment, within a short period of time, the symptoms would flare again. I saw a naturopath/homeopathic doctor who put me on some tonics and anti-candida supplements as well as an anti-candida diet. Because of the severe pain, I wasn't eating much anyway and when you add the restrictions of the diet, I was barely eating anything at all, and my weight plummeted to unhealthy levels. During this time, the specialist had stopped the Diflucan and Lamisil and started Sporanox 100 mg twice a day. When I returned for my checkup, the spores had decreased by 50 percent, although I didn't notice a decrease in any of my symptoms. Whether it was from the diet or the Sporanox or the combination of the two, I don't know. I stopped the anti-candida diet because I was at such an unhealthy weight, plus the specialist insists these diets do not work in controlling the yeast. She boosted my Sporanox to 100 mg 4 times a day (2 in the am and 2 in the pm with meals) and added Lamisil to be taken during certain times of the month that I felt like I was flaring, although I didn't notice any change adding the Lamisil at all. She also put me on 20 mg of Cymbalta, which is for depression and pain. Although it didn't help the pain, it certainly elevated my mood. We tried boosting the Cymbalta to 30 mg, but I developed cluster headaches with nausea and vomiting. She had wanted to put me on Elavil, but I was resistant as I had tried it several years earlier and I slept for three days straight. She also prescribed boric acid suppositories to be used twice a week. Sometimes these feel soothing and other times they burn the heck out of me. At my next visit, she continued me on the high-dose of Sporanox, stopped the boric acid suppositories, and prescribed Gynazole-1 to be used once a week except during the week fo my period. However, I use this about once a month because it does burn about two or three days after the initial use when the medication starts coming out. However, once I get past the few days of burning, I feel like it has knocked the yeast out, that is until whatever triggers them to start flourishing again. In December, I went to a local gynecologist to see if they would swab me with gentian violet, an old-time remedy to treat yeast infections. I knew the specialist probably wouldn't approve. I have had this done and really have not noticed any difference in my symptoms. In the meantime, I had a stomach virus around Thanksgiving and stopped taking all medications due to the queasiness. I didn't feel much different off the medication as I did on, so I kept myself off to see what happened. When I returned to the specialist in January, she stated that she only saw a rare spore (this is after being on the Sporanox for a year) and that she was releasing me from her care and that I could be treated/followed by a regular gynecologist. I told her that although she only sees a rare spore, I still do not feel 100 percent. I have a "dry" feeling, although it is not every day. She stated that she never promised a 100-percent cure and that I was much better than when I first started. She stated that perhaps it was a focal spot that I perceived as pain or a hot spot and prescribed more anti-fungal cream, which I have not used since I have not had any luck with them in the past. I am to continue the Gynazole and the Cymbalta. My pain level on a scale of 1 to 10 initially was 10+ -- the wishing I would die kind of pain -- now down to a pain level of 2.5. My good days actually outweigh the bad days, and it is nice not being reminded by my vagina that I have a vagina 24/7. Sometimes I worry that the yeast caused permanent nerve damage, but, as my husband pointed out, if there was nerve damage, nerve damage wouldn't come and go, the pain would stay. Other things I have discovered along the way that I hope others may find useful -- never ever bleach your underwear. I read this kills yeast, but the residual bleach left over even after additional rinse cycles burns like you wouldn't believe. The yeast spores have no problem letting you know when they are unhappy, and this really pissed them off. I now make my own laundry detergent. I tried the hypoallergic detergents at the store and am just amazed how much residue is left on clothing after washing. I once heard that you want have to run 25 rinse cycles in order to remove all the detergent residue. Actually, I was looking to save money, too, and came across a recipe for laundry detergent, which also happens to include Borax, a laundry booster. I use the recipe found on www.soapsgonebuy.com. I do the dry detergent recipe -- Fels Naptha soap, Borax, and washing soda -- and just buy the ingredients at a local grocery store. On the subject of sanitary napkins -- I used to use Always pads but did not realize that most sanitary napkins contain fiberglass and other fillers. I used to dread my period because of having to wear a pad because I would flare so bad during this time. Someone from church mentioned to use only 100% cotton and that she used Kotex brand. I switched and haven't had a problem with this brand. Personally, I prefer not to use tampons only because I want whatever yeast/bacteria, etc to have an escape route and not be holed up by a tampon multiplying and causing additional problems. Finally, one last thing, my chiropractor recently found a supplement called Candisol. He muscle tested me on it and was amazed how well my body responded to it. I began taking this and within two days was feeling remarkably better and noticed other changes as well such as my bowels being more regular. In the meantime, despite being released from the specialist, I do feel like I am battling some residual yeast that are causing some slight burning symptoms and mostly a dry feeling, but this is nothing compared to the days that I sat on and slept with ice packs between my legs. Sorry to be so lengthy, but I hope by telling my story it will help someone who may be dealing with the same issue/symptoms. My personal feeling is that the body has an amazing ability to heal itself and that if I am able to have one day without pain, then why can't all my days be without pain. I am determined to beat this. My heart goes out to all of you who struggle with this day in and day out. You are not alone.
CommentLyme disease is a bacterial infection transmitted by the bite of an infected tick. It may cause a number of medical conditions. The disorder is often hard to diagnose because its symptoms and signs mimic those of many other diseases. . Some people never notice a tick bite , like myself.....It wasnt till I had symtpoms due to a weakend immune system that I started to see bad things happen,,,vulvodynia being the worst of them. Unfortunately, the Lyme disease microbe itself is difficult to isolate or culture from body tissues or fluids, therefore making blood tests not always reveal the lyme bacterial infection. I was tested by a doc outside my network...I ordered the test direct from the lab, (WWW.IGENEX.COM) and then my doctor had to sign authorization for the blood to be drawn......I then sent the test back to the igenex lab and 7 days later the CDC was calling me... I was extremely infected, even though labs through my PCP came back negative. Lyme can lay dormant in a body and therefore it can be complicated to detect....the good thing is that Lyme doctors can and do diagnose based on clinical symptoms, without the need for a positive test. It is SO prevalent these days, I feel that many people are suffering in silence, due to the fact Lyme can really mimic a lot of things, Fibromyalgia and chronic fatigue being TWO BIGGIES. the nerve pain alone it causes is intense and very wicked. Basically in my case, the lyme attacked the facia (connective tissue) in my whole female groin area. It felt like chards of glass slivers in my skin and the burning was so insane. I was diagnosed previously as having vulvodynia and PFD. I had PT in SF for a year with no results, and that is when I continued searching for answers. By the grace of God , I found my doc who, routinely, checks for lyme, and that is how I found my main cause of pain. pain is not normal, it is not something that happens without cause. Feel free to ask me any questions via my direct email address. I am always happy to help a fellow pain suffer! below is a very long list of symptoms that are related to lyme disease,,,if you have more than 25,,,,,you clinically are a lyme infected person. Symptoms of Lyme Disease The Tick Bite (fewer than 50% recall a tick bite or get/see the rash) Rash at site of bite Rashes on other parts of your body Rash basically circular and spreading out (or generalized) Raised rash, disappearing and recurring Head, Face, Neck Unexplained hair loss Headache, mild or severe, Seizures Pressure in Head, White Matter Lesions in Head (MRI) Twitching of facial or other muscles Facial paralysis (Bell's Palsy) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose Eyes/Vision Double or blurry vision Increased floating spots Pain in eyes, or swelling around eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes Ears/Hearing Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears Digestive and Excretory Systems Diarrhea Constipation Irritable bladder (trouble starting, stopping) or Interstitial cystitis Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease) Musculoskeletal System Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia) Respiratory and Circulatory Systems Shortness of breath, can't get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Endocarditis, Heart blockage Neurologic System Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness Psychological well-being Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxiety Mental Capability Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasks Reproduction and Sexuality Loss of sex drive Sexual dysfunction Unexplained menstral pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain General Well-being Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Continual infections (sinus, kidney, eye, etc.) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well. Low body temperature Allergies/Chemical sensitivities Increased effect from alcohol and possible worse hangover
CommentTo All: I agree that it's a good idea to be checked for Lyme disease. My wife has had that test more than once and I recommend having this simple blood test frequently depending where you live. My wife's Vulvodynia symptoms which include thinning of the skin are not the result of Lymes. She has a friend who did not get properly diagnosed for years and now has lesions on her brain. I think it's great to explore all possible causes of this mystery illness, but we still need agressive and meaningful research. Someday.
CommentThat thing from Oprah just makes me furious. Dealing with this condition has been hard enough without someone putting their own spin on what the "real" casulty is - the ability of getting a man!!!!! What an insult. They push aside all of the other emotional and physical trauma that this condition brings to women of all ages, races, and relationship status have to deal with including the fucking medical profession. This message makes me feel truly exploited for my pain. As if what I and every other woman have gone through isn't enough to make a riveting show on Oprah without putting this offensive spin on it.
CommentTo Sharon: You have every right and reason to be outraged. Don't remain silent, write to the Oprah show every day and let tell them what you told us! Imagine if they had to read 100 or 1000 letters a day? I wrote to them on several occassions but it's easy to ignore one letter, especially if it's from a guy.If you haven't noticed Oprah has a real hang up when it comes to discussing sex, she acts like a little kid talking about something dirty. That's a big part of getting this illness discussed and researched, people are fine with discussing erectile dysfunction but mention "vulva, or clitoris" and all of a sudden the conversation ends. Our society is screwed up, women like yourself who suffer from this very personal and intimate illness need to talk to your friends and family openly, use the proper vocabulary and let them know what you deal with. Write to magazines, women's magazines who spend most of their time exploring "How He wants you to touch him" and other nonsense. Research will not happen as long as this remains hidden and your gyns are a big problem too. When they see my wife, I can almost read their minds "Oh, No! it's her again", she's the one with the problem I can't resolve. Where would the urologists be without viagra and cialis? All their patients with E.D. benefit from millions of dollars of research. Women deserve nothing less.
CommentI have been using Endep or Elavil in America for 5 years and its the only thing that has worked for me.I have Dysethetic vulvodnia which means the pain is there 24/7 but I can have sex pain free, Endep is the tri cyclic anti depressant Amptriplimine. It takes about 2 or 3 months before it works a 100 %. I have been pain FREE for 5 years and I pray it keeps working. Good luck everyone.
CommentI have suffered from vulvadynia since 1989 when I was diagnosed with allergic vulvitis by Dr. Ledger at Cornell Hospital. I was prescribed allegra, which I still take and went into a long remission for 10 years until I moved to Florida in 1996. I had a flare up and was treated by a gynecologist with Celexa, which also worked quite well and that I continue to take. I am 60 years old and post menopause since the age of 53. Recently, I went off of synthetic hormones in December after a breast lump scare and experienced terrible hot flashes. I saw Dr. Eckert, who is noted for his work with bioidentical hormones and began taking them 2 weeks ago. Since then I am again experiencing vulvar pain and believe that there is a connection with the bioidentical hormones, especially the progesterone. I spoke with Dr. Eckert who recommended that I cut the dosage but I am still experiencing discomfort. Of course I would rather have hot flashes than vulvar pain. What do you suggest?
CommentI went to the Oprah wensite and was overwhelmed and unable to find any info about her upcoming show. I would love to let her know how VV effects people outside of her preferred demographics and I find her pandering to pop culture! (Why doesn's she get the incredible husbands on there who support us?!) Can anyone walk me throught her website and tell me how to find where I need to go?? Thanks!
CommentJody: Go to "contact the show. Contact us" Then choose "idea for a show" and give them your thougths about Vulvodynia and what you think the show should include.
CommentI am trying to join the chat room and professional registry-I joined Yahoo and was now told the group denied access-can anyone explain why?
CommentI am trying to join the chat room and professional registry-I joined Yahoo and was now told the group denied access-can anyone explain why?
CommentWhen I had attempted bladder reconstruction in Nov. 06, the doctor put a hole thru my urethra. 1 wk later, I developed a hematoma that was 9.2 cm and sat on my entire pelvic floor. It stayed there for almost 8 weeks. Since then, I have had chronic sciatic pain in both left and right, left worse, and chronic pelvic pain. I have continous vulvodynia symptoms also. I have been taking Imipramine since 06, have had "physical therapy" and things of that nature but have found no relief. I'm concerned about taking medications like imipramine for this lenght of time and for what appears will be the rest of my life (I'm 38 years old now...). There seems to be no relief for me in New Mexico or Colorado but believe, or hope anyway, that I'm not at a total loss for help of some type. I've felt alone for a while with this pain and feel very overwhelmed and depressed. This is the first possible sign for help that I've seen so things may be looking up!
CommentI have vulvodynia and my doctor put me on Elavil 25mg at night. It worked for a few week and I call and talked to him about the medicine and he told me to go to to 50mg a night, will this help me with my problem?
CommentI am a sufferer of linchen schlerosis probably it as been on coming for some time I suffer in the genital area ,I am still not sure what is happening to me but maybe I tend not to take it seriously.
CommentI am wondering if anyone has noticed your symptoms getting worse around your period? I've noticed for awhile now that the pain gets worse during my period, though i've been painful everyday for 3 years so didn't notice the extent. A few weeks ago I upped my dose of amitryptyline and was finally starting to notice a difference...still hurt but definately not as bad! Then two days ago it got much worse again, and today I started my period. Wondering if thats related. Does anyone else pain worsen during their period? I'm wondering if I should be on some sort of hormone thing if it gets worse during that time of the month then i'd assume its a hormone thing? My vulvodynia also started three years ago when I was pregnant with my first son...so again, hormones out of whack! Thanks!
CommentMichelle: In the years I've been posting and reading here there have been many women who report worsening of pain during the time of their period. You can have your hormone levels checked, but chances are they will be in normal range. There are other factors which come into play during your period such as fluid retention which could paly a role in pain. My wife says that discharge during her period further inflames already sensitve or damaged skin which is her problem.
CommentI have yet to meet a woman with vulvodynia who doesn't complain of worsening symptoms related to her menstrual cycle. I too flare big time during ovulation and during my period. I have found avoiding always brand pads to be helpful, as they're very irritating (but this is by no means is a cure...)
CommentHullo, I am 54 and live in Australia. Over the past couple of weeks I have read some of the guestbooks and I can sympathise with the many sufferers just like me.The frustration, despite seeing many doctors who can't really help, and not getting any answers but still having problems.It drives you crazy. My problem started end of July last year. I felt really irritated in vulval area, and used a mirror to look. Shocked I noticed what looked like an ulcer . Dr. said bacterial infection and cyst (sweat gland left side) Gave me 2 different anti-b (1 with repeat) said to come back in week. Said was getting better. By now had terrible pain on left side could hardly walk. Sent me to a gyno. who did swabs, came back said I had a cervical infect. (not STD). He put me on 2 more anti-b., then came recurrent thrush. GP thought the root of my problems was dryness ( I did feel dry) and put me on Vagifem oest. pessaries. Helped a lot (started using end of Sept). For 2 and half months my life got back to normal until 2 weeks before Xmas started to get sore again. My GP was on holidays so I tried a couple of creams. Thought I may have thrush. They made things worse (burning). I had a look and inside opening was an area of round white flesh that looked like a cats bottom. He said infection and gave me Flagyl.Said what I saw was my cervix. Shocked. The tablets took away the burning . I saw another gyno 10/1 She did another pap ,results - inflammed but no cancer. Took blood. Suggested I have vulvul biopsies, cervical biopsy and hystercopy and D and C.(I still get regular period, very heavy, mother had urterine cancer)She also took off remains of sebaceus cyst and ingrown hair follicle - vulva Results OK but showed chronic skin inflammation. .Had it done 30.1.08. Any yeast or cortisone creams I use cause pain and burning, so won't use them. Told me to use squirt bottle, cool boiled water after urinating.I could tell she doesn't know whats wrong, but I am still suffering with the constant pain, irriration, its almost unbearable. Not game to use over the counter creams am afraid to make things worse, they all have extra chemicals and preservatives, even Aloe Vera and Sorbelene. 7 months now of hell and still no answers.If anyone has used something that helps and doesn't have nasty side effects, I would like to know. thankyou. Next step will see a dermatolagist. This has been so stressful that at times I have felt like I wish I would just not wake up one morning. I know many women in their 50's to 80's and none have suffered anything like this.
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CommentI have been suffering from the pain for about 3 to 4 months now. it felt so horrible I would have this horrible burning feeling after I went to the toilet and I would have to sit in a position on my chair to stop the pain from hurting so much. I drink alot of coke and soda. so when we ran out of soda I drank water all the time this went on for about 2 days or so and I felt no pain what so ever. then we got more soda and when I started drinking it the pain came back then I stopped drinking and the pain went away. so it must be something in the coke or soda. Maybe its the bubbles or the caffine.
Commentthink I can help you re cola drinks. They are in the moderately high class of drinks containing oxalates.This substance creates uric acid in your urine which irritates the skin which is already inflammed. Its recommended to take calcium citrate tablets which is supposed to bind the uric acid in your urine..A gyno recently told me to get a squirt bottle filled with cool boiled water and squirt the area after you urinate. Have noticed a lot of women in the guestbooks do this as well. Hope this info helps you.
Commentis all vulvodynia caused by pelvic floor dysfunction or are there other causes? thanks
CommentIt can also be caused by hormonal imbalances, infections, anatomical problems, etc.
CommentFinding a Doctor that understands this condition has been worse than the condition itself. After several doctors failed to diagnose my condition I found I found useful information on the web. More than two years and later and I still continue to suffer in silence. I made an appointment with a Dr. who claims to have successfully treated this condition. What's new out there? Aside from surgery I have tried many of the treatments, was even sent to a Mental Health Specialist ;-(. Anything new out there on this topic?
CommentJohanna, more doctors are aware and accept the term "Vulvodynia", but to my knowledge there is nothing new regarding treatment. I have not read of any "Cures", and I would be very cautious of anyone claiming cures! We don't evne know what causes the many symptoms of vulvodynia. Some women may have pain and or thinning of the skin and other symptoms due to trauma to the area and nerve damage, some women associate their problems to a new lover, the Pill, antibiotics, anti yeast or antifungal medications, genetics, and many other possible causes. Unless we all have missed something, this doctor offers nothing but hope for you and the opportunity to increase his income. Please post your opinions after meeting with him and any course of treatment he suggests. I'm not saying there aren't treatments to reduce symptoms, but to claim a cure is cruel and fradulent. Hopefully with enough research the exact cause or causes can be determined and precise treatments can be applied.
CommentJohanna, more doctors are aware and accept the term "Vulvodynia", but to my knowledge there is nothing new regarding treatment. I have not read of any "Cures", and I would be very cautious of anyone claiming cures! We don't even know what causes the many symptoms of vulvodynia. Some women may have pain and or thinning of the skin and other symptoms due to trauma to the area and nerve damage, some women associate their problems to a new lover, the Pill, antibiotics, anti yeast or antifungal medications, genetics, and many other possible causes. Unless we all have missed something, this doctor offers nothing but hope for you and the opportunity to increase his income. Please post your opinions after meeting with him and any course of treatment he suggests. I'm not saying there aren't treatments to reduce symptoms, but to claim a cure is cruel and fradulent. Hopefully with enough research the exact cause or causes can be determined and precise treatments can be applied.
CommentI think there are cures for vulvodynia, DEPENDING on what is causing it. But for some..there is no cure at the moment because they cant pinpoint the cause. If yeast is the problem then getting that under control will eliminate symptoms. If you have pelvic floor dysfunction then pelvic floor pysiotherapy can treat this. It depends on the cause. Vulvodynia is a 'catch-all' phrase meaning pain in the vulva, not a disease in itself.
CommentHaving read many of the guestbooks it seems to me like most women fall into 2 categories. Those with a diagnosed disease e.g. Lichen, herpes. etc. or those that had a bacterial inf. etc. followed by anti biotics which lead to thrush treatments. I feel sorry for the women who have this that have to go out to work, also the ones with partners who try and have intercourse, because that is the last thing you would feel like doing. Imagine having to use a numbing agent just to have sex as some have mentioned - and the doctors can't find an answer to this problem - incredible. Also there seems to be many young women affected. With myself (54) but still with regular period (freakish I know) I'm sure that there is a hormonal component involved, but the younger women should have normal hormonal levels. I think the skin gets oversensitised with different lotions and potions we try to get some relief. I can't use things now that I could just a few months ago. Most creams make things worse for me and the cortisone creams burn like hell. To Frank - I think it is great that you write in on behalf of your wife, I hope she is feeling better. The next step for me is to see a dermatologist - have already seem 10 general practictioners and 2 gynos. God bless Dr Glazer for this website, especially the guestbooks.I would like to hear from women in the older age group that are sufferers. Anyone is welcome to email me personally.
CommentTo Linda: I have the time and interest to read and post so I visit here hoping to hear something that might help. If you think there is a hormonal component to your problem then if you can afford the expense you shold seek out an endocrinologist and put that issue to rest. My wife's results came back in the normal range, but on the low side. I've heard of optimal hormonal levels but not all doctors agree with this theory and to correct thses levels adds to health risks. Regarding the diagnosis of Lichens, my wife has one labia that looks normal and one that is disappearing, her gyn says Lichens and "Welcome to menapause". That's the extent of the medical advice and research available at this time. To a previous poster regarding "Cures", if a doctor successfully treats a yeast conditon that is causing you redness, itiching, tissue damage and or pain, then you were cured of a yeast condition not vulvodynia. In my opinion Vulvodynia describes the more vague unknown problems that cause these various symptoms and not the recognizable and treatable problems such as yeast, infection, definitave Lichens and so on. Many women here have been suffering from thinning skin of the vulva and have been treated with Estrace and many other topicals to no avail because the problem was not hormonal. Many women here suffer from burning, itiching and pain and have been treated with anti fungals, antipuratics, antiyeast treatment to no avail. All I 'm saying is if your doctor is able to diagnose a treatable condition then you never really had Vulvodynia, you were simply misdiagnosed by your previous doctors(s). Vulvodyia is the unknown, the unresponsive, the unresearched that doctors mention when they are at a loss.
CommentI have not contributed in years, but felt compelled to check out the website again. I see below someone is having symptoms around their anus also. I had vulvar pain; pain at my anus and rectum. My vulvodynia was 95% cured with antibiotics, but I had symptoms of infection. strange discahrge plus other symptoms. All of my cultures came back fine, but the antibiotic augmentic is a miracle for me when many antibiotics did not work. Without telling a very long story, but sddressing the girl that has pain and a rash at her anus, if you dont have a bidet in your bathroom get a squirt bottle (the ones restaurants use for decorating the plat like the old ketchup and mustard plastic bottles work best) fill it with water and rinse every time after you go to the bathroom to urinate or bm. If you can take a bath at night before you go to bed. You don't have to do it for a long time, just do it for a week, and see if it helps dramatically (try it at first while you are not menstruating). If it does then I believe it is your discharge that is irritating you, and when you wipe back you are spreading it to your anus. If it works you can summize what you like. I tend to believe that if it works it is then not muscular or nerve endings, but irratation from either an infection or possibly an allergy.
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CommentRe: Pain during mentrustion. For those who report worsening symptoms during periods. I also had this, and my PT explained it this way. Right Before a period starts, *and during it) the body starts getting ready to have a baby, and releases a hormone that loosens up the cartilege and joints, so that the body can be more flexible during birth. However, the whole body isn't aware of this and so the muscles try desperately to keep the body together from its perceived "loosening." Because of this, those who suffer from pelvic floor dysfunction, this tightening makes things worse because the muscles get even tighter. Hopes this helps explain some of it.
CommentVulvodynia is an unfortunate word, and is as general as back pain. For those with pelvic floor dysfunction, there definitely is a cure. QUALIFIED physical therapists who I have talked to have a near 100% success rate, as mine did, and I am completely pain free, with lots of pain free sex. There are lots of unqualified PTs out there who unforunately have a lot less success.
CommentI have not yet been diagnosed with vulvodynia, yet. However, I believe that my chronic sexual pain is due to vulvar vestibulitis. I am only 21 and have been havng mild to moderate pain during intercourse over my entire sexual life ( since i was 15). Recently my pain has become unbearable and I'm not sure what has caused it. I do know that the pain has gotten worse since I started taking Loestrin 24 last year (bc) and my partner of two years just could not believe that there is such a thing as vulvar pain. He's gotten better since I've shown him this website. Having this is so depressing and I find myself going through the stages of denial, acceptance, bargaining, etc. The concept of this being a medical issue is so new to me because my doctor group all treat me as if this situation is not that serious. Needless to say I will be searching for a new OBGYN on Monday. Like I stated in the beginning of this post, I have not been diagnosed with vulvodynia or vulvar vestibulitus which is ridiculous considering the overwhelming evidence. I just saw this site four days ago and in that time it has helped me more thanthe help I've received in the past SIX YEARS! So thank you for the info Dr. Glazer and I would like to be added to the mailserve. And if anyone knows of a good doctor who specializes in this issue in the Washington, DC metropolitan area would you let me know? Also everyone here has to do their part like Dr. Glazer stated and let the world know about this because I had never heard of vulvodynia and thought that this was every woman's reality ( such 1950's thinking huh?) until I saw this site. I know that I'll be writing letters and emails to Oprah, The Tyra Banks show, Ebony and Essence magazines, and BET!
CommentMiya: Welcome to the GuestBooks. Getting the word out has not been very successful in the past. The media is fine with talking about and advertising male erectile dysfunction, but has major problems discussing women's genitalia or God forbid Vulvodynia and pain. Oprah had a show about "Women's " problems a few years ago and when the word Vulvodynia was spoken she giggled! I and others have written her show with no response. We have heard that she may do a show with a panel of single Black women who have Vulvodynia and how it has impacted their dating lives. I hope you have something that is treatable and not the mystery of illnesses clumped under the title Vulvodynia. If you have the time read some of the past GuestBooks, they are very helpful. Take care.
CommentFrank, you keep talking about all of the conditions that fall under vulvodynia as being '"mysteries." You do not have a vagina and you have not had vulvar pain. You have not sat in the room of a specialist of the vulvodynia type which is vulvar pain and have her explain every symptom you have ever had and explain why it is happening to you and what caused it and how she can make it better. And you have not spent every week in a PT's office with her hands up your vagina proving that she knows what is going on with you and with the hundreds of patients she has seen. So, please, you may be good intentioned, but you are not an expert on this condition, so please stop calling all vulvodynia "mystery conditions. It just helps perpetruate the myth, at least for those who suffer from pelvic floor dysfunction.
CommentTo Sharon: It is never my intention to make any of the ladies here upset and I apologize since my frustrations and comments have annoyed you. You're right I don't have a vagina, at least not on my body, but I do have my wife's and it has not been well in a long time. When she hurts, I hurt because she is my only outlet for female sexual intimacy and it kills me inside! I've sat in plenty of gyn and Vulvodynia expert offices. I've challenged their bullshit and argued their treatments and sincerity. I wish more husbands and especially more women had my passion to get answers. When every single gyno and expert prescribes Estrace when they don't even know if my wife is deficient in estrogen they are treating a ghost! When I say the "Mystery Illness" of Vulvodynia I mean exactly that, I mean all the pain and suffering which is not caused by treatable yeast, nerve entrapement, out of whack hormone levels or some other defineable and treatable condition. There are women here my wife included who have suffered for years after being treated by dozens of experts promising cures. Women who have had surgery, taken countless medications to no avail. Oprah doesn't want to hear of your problems, your relatives and best girl friends don't want to hear the troubling details because it is too personal, too painful to think of. I do, I care and I want women to get made, not at me but at the system that has ignored them, the system that has tried to convince them that it's all in their head. Go back and read the past Guestbooks, women smearing crisco on themselves to soothe the pain, packing frozen peas against their crotches to ease the burning. Men get millions of dollars in research and medication to resolve erectile dysfunction and women get frozen peas! Am I really the one to receive the anger? I've spoken the truth in the hope that someone with enough clout will finally reach out and start the ball rolling that gets this illness out of the shadows and into the spotlight. Like I said, aside from the conditions that can be diagnosed, there are several conditions at work causing burning, itching, pain, skin tearing and other symptoms the cause of which have NOT been discovered and for which there is No treatment and No cure. Whenever I read of a new lady posting here of her symptoms I pray that she has some treatable condition that has just been missed by her current doctor. I have daughters and if this excuse for medical ignorance termed Vulvodynia is not properely researched and CURED, my daughters may suffer needlessly. I don't want that and I hope you don't want that either.
CommentHi, I have been suffering from Vulvodynia and unable to have sexual intercourse for 4 years now, I have tried biofeedback, dialators, interferon injections, botox injections and sexual counselling with no results. I am about to undergo surgery; a Vulvoplasty and YV advancement flap. Has anyone else undergone surgery of this nature?Thanks
CommentSharon--If you would not mind, please share the name and location of your physical therapist with the rest of us. Thanks.
CommentMy Physical Therapist is in Austin, Texas and you can see her website at www.sullivanphysicaltherapy.com. We just had a great success. A Mexican woman (living in Mexico) who has been suffering from vulvodynia from 3 years contacted me after finding one of my posts on this site. After 8 monthes, I finally convinced her to come to Austin and see my physical therapist. She had her first appointment with our PT today and called me an hour ago. She was absolutely thrilled beyond belief. Finally, someone was able to talk to her and explain all of her symptoms to her and to finally make sense of her body!
CommentTogether with my wife Pascalle, I have a practice for Massage and Advanced Bodywork in Marbella, Spain. Originally we are from Amsterdam, Holland. I have more than 20 years of extensive experience and I am an expert on Psoas- and Pelvic release. What surprised and puzzled me the most, when I started working with Psoas-, Pelvic muscles and surrounding connective tissues, is that they can be so incredibly tough, shortened, twisted and hard; that almost no blood or even lymph can go through there. And this happens to normal beautiful young people, women as much as men. So, somehow it is no wonder at all that something so serious like vulvodynia can develop. That incredible amount of blocking pressure on vital nerves has to lead to some kind of physical or energetic breakdown. Sports and physical exercise usually is not going to be of much help to release all the tension. There has to be, or has been emotional stress connected to it too. Many years ago, I developed a special way of manipulating the Psoas and Pelvic muscles and it took me quite a long time to master the technique. My technique is very unique; just to let you know and I have a lot of success relieving many serious complaints. Maybe you are going to be near Marbella, for a vacation, who knows. Visit me and let’s do some good work on you. Kind regards, Jelle Schaegen Marbella, Malaga, Spain info@bodywork.es www.bodywork.es
CommentJust a few tidbits of info. I've come across on different sites that may be helpful. 1.constipation and a full bladder put pressure on vulval area. 2.Ointments may be more gentler to use than creams, but ointments are better absorbed by skin so don't use too much. 3.It can take some time for symptoms to resolve as the skin of the vulva generally takes longer to heal than in other areas of the body (was talking about vulval dermititis). 4. A derm. site that wrote about cortisone creams said that the genital area skin has an absorbtion rate of 30% as compared to other areas of the body (it stated them but I can't remember) that may only have an absorbtion rate of 1 or 2%. I went to my general practioner yesterday for the upteenth time with my problem and I sensed he had an "attitude" with me. Like he was sick of the sight of me, well I'm sure as hell sick of the sight of him as well. I've noticed that with a couple of others I've seen as well. They were both woman, one a gyno. It's like you have offended their ego or something because they can't "fix" you. He wants me to take Endep (Elavil in USA). I looked it up and its a anti depressant I gather. Remember from the guestbooks that many have taken it.To people that have taken it could you comment on whether it helped you and any side effects it has. A friend of my sister has taken Arapax and Effexor XR in the past and said the side effects were deadly.Something else, I can't see the link between having a sore, burning,stinging, itchy vulva and people having physical therapy on their pelvic floor muscles. Some say it helps them but I can't see the connection, any comments.
CommentBefore I forget, something else I read was that most of the nerves in the vulval area are on the left side. Many have mentioned that their pain is on the left side - me also at times.
CommentRe: vulvodynia and physical therapy. It doesn't take much to get all of the muscles in the abdomen, glute, and vaginal area in a wad. Extrememly tight muscles press down on the vaginal nerves, which causes pain and burning. When I heard about this for the first time, it did seem funny. But, when I went to see my physical therapist for the first time, she calmy proved it to me by pressing down on a huge knot by my belly button and whamo! huge pain in my clitoris. The body is all tied together, and I have found 100% relief when my PT worked on my muscles every day to loosed them up and they stopped pressing on those nerves.
CommentTo Sharon - thanks for your comments re physical therapy. I'm glad it worked for you. One thing I find disgusting is that when you Google any proper medical term for the female genitals to find info. that may help, all these disgusting porn sites come up. It really makes me sick. It shouldn't be allowed.
CommentTo Erin that posted on 23/3 and is about to have surgery. I noticed by your email address that you are Australian. Me too from Sydney. Is your doctor Richard Reid from Sydney.If not, and your dr. is a good one, could you give out his name and where his practice is. You are welcome to email me personally if you like.
CommentI found this interesting, although somewhat overly academic article on vulvodynia and trigger points. This is my belief of what the majority of vulvodynia patients actually suffer from and was definitely my case. http://www.pelviperineology.org/practical/chronic_pelvic_pain.html
CommentHello! I have been diagnosed with PCOS since 1999 and recently received the diagnosis of Vulvar Vestibulitis. I was wondering if anyone else out there had these two syndromes as well. I am wondering if they are somehow linked? Any thoughts or experiences? Thanks!
CommentMy name is Aimee and I was a sufferer of Vulvadynia from Feb 2005 until around November 2006, nearly two years. It was a period of desperation, extreme depression and anguish for me. I initially saw my GP who was hopeless and then was referred to one of only two gyno's in my city, I went along expecting to be diagnosed with sever thrush or something that they would write me a perscription for and would be gone in a week, when he said there was no known cure and didn't know how long I would suffer I was horrified, To cut a long story short I was unable to have sex with my Fiance for over a year, I took a ring cushion with my everywhere to sit on. I couldn't wear pants, or underwear, only skirts including through winter. I felt the pain of it every single day, I kept a pain diary and recorded everyday where the pain was at on a level of 1-10. When it first began it was at a 8, I was hardly able to leave the house, I would lie on my bed with a cold flannel between my legs feeling like the whole area was on fire, I sobbed for weeks. Over the months it gradually came down and a year after it started was down to about a 2/10, though it was still too painful to have sex or wear underpants. On my wedding night I had sex for the first time in over a year, the discomfort was still there for a few months after that. I then got pregnant two months later, something I had been unsure would happen, the pain gradually subsided throughout pregnancy and I was able to deliver naturally, I was very nervous about this as the idea of having to go through a major setback was very frightening. Now I am fully recovered, since having my daughter 6 months ago, I wear jeans, underpants comfortably and sit without my cushion. I also go to the gym and walk regularly, something I missed so much when I couldn't I wanted to write this posting to give hope to all those woman suffering from this condition, it makes you feel trapped in your body sometimes and there were nights I would lie awake and dream about the bliss I would feel when there was no burning throbbing and itching pain in my vagina. At times I couldn't see the light at the end of the tunnel, Because the recovery process can be so slow it isnt easy to see how far you have come, that is where my diary helped me, sometimes I would have to look as far back as four months to see that I had made progress. I am so thankful for my health now, having been through this major health issue I feel so much stronger for it. At the time I would never have said I was thankful for it but now looking back at it, it really changed me as a person for the better. Now when I have the flu or even when I was experiencing child birth and afterwards when I was extremely tender I felt like I could deal with anything after all a bit of discomfort for a few days was nothing compared to what I had been through. Reading some of the sites online now, I can see that there has been some huge leaps and bounds in the publicity of this condition. It is also made more difficult because of the nature of the problem. There is so much known about something like cancer for instance, but my condition was not something I felt comfortable sharing the details with my co-workers and most of my friends, so I felt like I had to hide how I was feeling all the time. I truely felt like I was the only person in the world that had this crazy thing. Anyway, even if this posting makes one person see the light at the end of the tunnel I will be satisfied, because it will go away!!!
CommentTo Aimee - thanks for your encouraging post. You state that "over the months it gradually came down" (pain) and "the pain gradually subsided throughout pregnancy" I would like to ask did you use any treatments that you feel made the pain subside. By reading your post, it seems that the pain just went away by itself. Could you be more specific.In saying that, maybe your pain did just go away by itself which is great for you. Congratulations for your baby.
CommentHi Erin, I have had the surgery you mentioned. The first round was mostly successful, but a few remaining "hot spots" were removed a few weeks ago and I already notice improvement. I'm not ready for intercourse yet, but I'm pain-free in all other activities. If you are sure surgery is the right option for you, then I highly recommend it. I did not have hormone-related symptoms, diet change didn't help, neither did drugs or PT. Damaged nerves do not heal.
CommentHi Erin, I have had the surgery you mentioned. The first round was mostly successful, but a few remaining "hot spots" were removed a few weeks ago and I already notice improvement. I'm not ready for intercourse yet, but I'm pain-free in all other activities. If you are sure surgery is the right option for you, then I highly recommend it. I did not have hormone-related symptoms, diet change didn't help, neither did drugs or PT. Damaged nerves do not heal.
CommentTo Frank - good on you for your last comment. In my experience so far, the medical knowledge on this condition is nothing less than Third World. Maybe the witch doctors in some countries would have more success than our Western quacks. If the condition doesn't kill you, the stress of it will.
CommentTo Linda: Thanks for your response. It's been years of pain and discomfort for my wife and frustration and upset for both of us. She has had her long time obgyn literally turn his back on her when she was in the office for a routine checkup because he probably thought it had something to do with the symptoms he could not resolve. Now she is going through needle biopsy for a breast lump and will get the results any day. Thank medicine that breast cancer has been researched and mnay procedures are available if the mass is malignant. I know my presence here is not well received because I am a man and not a sufferer, but I need to be here. I sincerely hope more of the ladies who suffer from vulvodynia realize this illness needs to get the attention and coverage of any other major medical problem. The only way this can happen in my opinion is if women who suffer can somehow desensitize the media and other men and women from shutting down when they hear the details. How backward is our society that we cannot discuss the female anatomy, we fall apart when a woman's breast is shown on tv as in the case of janet jackson. We accept the horrors of war and endless violence on tv, but the beauty and wonder of a woman is treated in the worst way. The media has no problem airing countless ads and infomercials having to do with male erectile dysfunction, and that problem received plenty of research. I care for the women suffering now and those who will suffer needlessly in the future. All this guesswork and unnecessary medicating should stop, and women should be properly diagnosed and treated but we are not there yet. Take care.
CommentHey, I was diagnosed with vestibulodynia almost a year ago now (pain on light touch, but not unprovoked), and have been using EMLA cream for intercourse with my partner, which has worked ok so far. Obviously I would rather have intercourse like a normal person without the need for a local anaesthetic, but it's better then the 5 months when we had no intercourse at all. I was wondering whether anybody has tried acupuncture for vulvodynia/vestibulodynia, and if so, what were the results? Any info on this would be greatly appreciated, thanks.
CommentI have gotten relief from Acupuncture. I started out going twice a week when our insurance was paying part of it. They don't cover it anymore, so I go once a week. I haven't had any bad pain in quite awhile. You could try it a few times and see if it helps. Good luck.
CommentSomeone said recently to see a gyn. not an ob/gyn. I agree with that. The first one I saw was an ob/gyn and a fertility specialist, and he was hopeless. The ob/gyn's are too busy delivering babies to worry about us.
CommentIf PT isn't working I would think you are not going to the right PT. I chose the wrong PT and am now going to the right PT. Vulvodynia/Vuestibulodynia is neuromuscular in origin and yes, there are some things that can help with it and treat it, but the cure is to fix the cause. And most of the time the cause is because of muscle spasms in the pelvic floor. Seeing a pelvic floor physical therapist who understands nerve pain that goes along with this is the way to go. If anyone wants more information, help, advice, etc... please contact me.
CommentI am starting a support group for pelvic pain in the Dallas, Texas area. If you are interested let me know.
CommentThere aren't any Gyno's out here who don't deliver babies. Some nurse practitioners treat Vulvodynia patients.
CommentI have just been diagnosed - in a tentative sort of way by my OBGYN - with Vulvodynia. I have been seeing symptoms for ten years (since 1998), but have been mostly pain free until the births of my two daughters in 2004 and 2007. A long list of abdominal complaints took me to my doctor initially a few months ago, and on my own it occurred to me to go see a chiropractor. I was fortunate to find an amazing chiro who is so well informed about whole-body-health and women's health. He quickly suspected hyperactive psoas muscles and used an activator tool to loosen the muscle knots (just from the outside of my abdomen). What an amazing difference! Between that and the rest of the skeletal and soft-tissue adjustments I can touch my toes for the first time in at least ten years, look back over my shoulders, lean back and arch without pain, and I have remarkably improved muscle mobility in my pelvis. What I really want to see on this site, though, is a list of ailments, diagnoses and treatments in the history of other vulvodynia sufferers. I suspect that a significant cause is stress, although auto-immune/inflamation history seems to pre-dispose. Another factor I suspect is the "highly sensitive person" characteristic. Here's my list, in roughly chronological order: Colic (age 0); Infectious mononucleosis (age 7); swimmer's ear and ear aches (age 7-15); fainting spells (due to dehydration? - age 16-21); stress fractures in sesamoid bones (feet)(age 16); frequent throat infections (age 16-19); birth control pills (ages 18-21); rheumatoid arthritis (diagnosed age 20); occasional gardenella vaginitis (age 18-22); yeast infections after all antibiotics (ages 18-25); occasional UTIs (age 20-21 and 30); strep throat (age 21); trichamonas (age 22); hairline fracture in lumbar (age 22); bronchitis (age 23); fractured shoulder (proximal humerus)(age 24); antibiotic protocol treatment for RA (age 25-26); HPV (diagnosed age 27); cryo for HPV damage (age 27 and 28); acute pain indicating onset of vulvodynia (age 28); endometriosis (diagnosed age 30); laparoscopy and leep (age 30); treatment with depot lupron (7 mos), depot provera (3 mos), depot lupron (3 mos) (age 31); pregnancy and birth (age 34); sleep disturbances (oddly associated with maya abdominal massage)(age 34-35); urinary incontinence (treated well with PT (age 34); throat infection (age 34); recurrence of Epstein-Barr Virus (resident as a result of Mono)(age 34); episodes of acute vulvar pain (age 34-38(present)); two miscarriages due to hormone imbalance (age 36); pregnancy and birth (age 37); periodic mild depression (age 11-38, except during depot injections); high anxiety (age 27-32); regular chiropractic care and therapeutic massage (age 32). I also have low blood pressure, never get fevers, have blood type AB-, and fit the profile for a "highly sensitive person" as described by Elaine Aron. Interestingly, the percentage of the female population estimated to suffer from vulvodynia is approximately the same as the percentage Aron suggests are "highly sensitive". Thankfully, I have always had many more days pain-free than suffering, in spite of my medical resume. My healing wishes are with all of you out there suffering so much more than I am. And may they find some answers for us all soon! - Jessie
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CommentThis might sound bizarre and antifeminist, but it is the truth. I was suffering terribly from vaginal pain and tried all kinds of creams, soaks, humiliating visits with do-nothing doctors, etc. Well, the weirdest thing helped. I'd had the feeling often as though something was pulling on my pubic hair. And as painful as it sounds, I shaved it all off using Aveeno shaving cream. Since then, I have had virtually no pain there, as long as I keep shaving it off. Wondering whether it might be possible to become allergic to your own pubic hair. Might not work for everyone but could be worth a shot. And it is so true how horrifying it can be going to these doctors. I wish I could find a GYN who didnt deliver babies. I hate going and sitting in a waiting room by myself while there are so many women coming in pregnant and then coming later to show off pics of their babies, everyone happy happy happy and I am sitting there in tears, feeling in pain and left out. Much love to everyone, I hope you get relief.
CommentTo Amelia: Trust me not all of those pregnant women end up with healthy and happy babies, there are heartbreaking stories among them. Why do you consider shaving public hair as antifeminist? I think it's just a trend and will pass in time. Your relief may have to do with nerves in the area and shaving somehow disrupted the pain cycle. This could be a problem for women whose pain, itching, redness and inflamed skin is due to yeast. The shaved skin might be more sensitive to the irritation caused by the yeast Just a thought.
CommentI have suffered from vulvodynia fpr 5 months. It was so bad that I could not even sit which left me to have to quit my job. I am noe pain free and working again. My doctor prescribed Effexor XR 75 mg and after 4 weeks on the treatment the pain went away and I have a normal life again. Hope this helps. CS
CommentPlease help my sister, Lauren! She has been suffering for four months! Constant vaginal pain. She has had every test and been to a dozen doctors. No one can help her. Please advise!
CommentTo Lauren: Pain management is available and there is no reason your sister should be suffering so badly. Elivil and other antidepressants are commonly prescribed to reduce pain. Doctors may not be able to identify and treat the specific causes of the pain but they can prescribe medications to take the edge off. Please encourage your sister to find a doctor who is willing to write her a prescription. Some women are hesitant to take these meds because they can cause weight gain and there is an adjustment period to find the right dosage, but chronic pain takes a toll that's worse. Best of luck to her.
Commentfor Frank - About Oct. you said that Propylene Glycol (sp?) is used as a preservative in cleansers. I have noticed that any cleansers or soaps for sensitive skins that are supposed to be gentle, that when you read the ingredients are loaded with chemicals with long names. Even though we are told not to use anything but water on the area, I don't mean to sound indelicate, but you have to wash your rear end with something, and I realise that even though you rinse off thoroughly, some of the cleanser would get to the vulval area.Was wondering if you did any research on this, or if you have any suggestions. After a long time of using nothing in the area, you tend to feel 'dirty' down there. Also re taking Elavil. A lot of people have said it helps them, some have even become pain free. I know its supposed to calm the nerves, but why are the nerves inflamed in the first place. Are you supposed to take it for the rest of your life, if not, what then? It just sounds like a cover up to me. There's got to be a reason for all this - people wash down there, from the day they were born, by their mothers, then most of their lives, then this comes on them, then the doctors tell you use nothing, and your living with pain everyday, and no one can really understand how it feels, even other women.
CommentTo Linda: I'll start with the Elavil questions. My answers are based on what Dr. Horowitz the former Vulvodynia expert my wife and I saw years ago told us during a visit at his office in upstate CT. He said that the nerves in the area of the Vulva become inflamed causing redness, itiching and pain. He did not say why and I ifgured it's because they did not and still do not know the causes. He said that Elavil would "calm" the nerves, personally I think this and other antidepressants sedate the entire body more or less numbing the patient to the pain. I guess on a person to person case that can be a life altering relief. He also said that the medication would only last several months to just over a year before it would not be effective. I'm guessing here again that the body builds a tolerance to the medication. I suffer from chronic neck and back pain and I believe that occassionally breaking the cycle of pain is very important not only for our emotional needs but also for all the nerves and muscles that cramp up due to our response to pain over a long period of time. My wife refused to take the medication because she did not want to be sedated or gain weight as she remembered her mother having done when she was treated for manic depression years earlier. My wife also did not have the constant or chronic pain that some sufferers experience, she only has pain when she has that paper cut like tear due to the thinning skin. Lastly regarding soaps and washing, my wife primarily will use Dove Bar or Ivory and she does not scrub her vulva or anal area. I know we all get sweaty and dirty but she will flush and wash with the shower spray and not really soap up that much. I think she gets clean and without the harsness of the soap washing away more of the skins protective layer than necessary. There's a fine line between washing away the sweat and odor of life and causing damage to sensitive skin. I think you might find soaps with less additives in a Health Food store, for get the so called "Sensitive Skin" products because they will all contain a vast assortment of chemicals to preserve, prevent separating of ingredients and so forth. Take care.
CommentHi everyone, I believe that I have vulvodynia, and I am seeking some advice on getting on the proper course of treatment. About 2 years ago, I experienced some burning during and after urination. I was referred by a gyno to a urologist. He put me on alpha blockers (Flomax), which did nothing. He did a cystoscopy, which helped some (apparently my urethra was contracted). I was still having problems after many months, and I was getting frustrated and depressed. Finally, uro referred me to a pelvic floor PT, and at the same time I went on Cymbalta for my depression. Either the therapy, the medicine, or the 2 combined worked miracles. I have been great for almost 18 months, but now I am experiencing a burning sensation in my vagina and vulva after urinating, vaginal itchiness, and a tingly sensation in my vulva/genital area occassionally (usually after I urinate). Went to the MD, no UTI, no yeast, no trich, no BV, nothing. My GP thinks this might be vulvodynia (based on the pattern of symptoms I have had over the years, including a lot of vaginal/yeast infections). She has referred me to another pelvic floor PT. But, I am wondering what else I can do? Is it reasonable to think this is vulvodynia? Do I need to switch antidepressants? I could really use some help...last time I went through this up and down, back and forth with doctors and treatments I ended up in this downward spiral of feeling terribly alone and depressed, and I just don't want to start down that path again. Thank you!
CommentTo Frank - thanks for your comments. I was prescribed Elavil (Endep here) a while back. I haven't taken it yet, like your wife I am wary of the possible side effects and will leave it as a last resort if nothing else works. You won't believe this - last week I felt like I had yet another bladder/vaginal infection,went to this doc I had seen once before, and said I wanted a urine test/vaginal swab done. He said ' you can do the swab yourself out in the toilet when your doing the urine sample'. I said no I wanted him to do it. I thought you have got to be joking, how unhygenic is that! Again Third World. Tests came back neg. as usual. I saw a derm. today. She told me to use QV Gentle Wash and QV Cream. Also prescribed a cream called Elidel (pimecrolimus). Noticed it has benzyl alcohol as a preservative, so it will probably burn like hell. Told her I can't use cortisone creams. Told me the usual precautions e.g. cotton underwear etc.etc. things your average 10 year old would know. I agree with you about breaking the pain cycle though.12 years ago I had a pinched nerve in my neck due to degenerative disc disease and had to take anti inflammatories for 6 months. Luckily I could tolerate them.
CommentJust a word of advice that might be useful. When you feel like you might have a vag.infection/yeast. Don't diagnose yourself and buy over the counter yeast treatments to use. It's a pain, but its best to see your doc. and have a swab done to make sure. If you use this stuff and don't have one, you are going to make the problem worse. Because with this condition, you feel that you have yeast etc. but most of the time you don't.
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CommentAfter reading this website for many months I decided to share my story. I am a 43 year old RN married and a mother and I have suffered with vulvadynia for almost 6 months. After 2 OB/Gyne MDs, a Nurse Practicioner, at least 10-12 visits and many phone calls all in 3 months I finally found myself in the right place. It all started with an allergic reaction and 3 diagnosis of BV that got me thinking that something was not right. I had never had a yeast or bacterial infection in my whole life and I am in a good marriage. How could this be? My Gyne MD recommended a Uro Byne who diagnosed me with Vulvar Dyesthesia and prescibed Lidocaine Cream -- which unfortunately did nothing but he was kind enough to refer me to Dr. Frank Tu and Dr. Sangeeta Senapati in Skokie for those of you in the Chicagoland area. This practice took the time to listen to me as well as a thorough exam. I had already ruled out Cancer and IC before I had even seen them. I was so depressed and sad. I lost 10 pounds, couldn't sit or even just be myself. We started treatment with Lidocaine Gel at night with a cotton ball and saw some good improvement but I was still emotionally drained and anxious. I have now been on Elavil for almost 4 weeks and I am starting to feel like myself again. I was nervous to take it but we started at 10mg and increased it by 10mg every week. After 3 weeks I was feeling better. I am not 100% but feel like a real person again. I can wear jeans and even had intercourse with no problems. My feelings are that if you can find the right Doctor with the right knowledge you can and will feel normal again. I do have a few side effects from the meds but nothing I can't live with and now I really think they have subsided. The grogginess seems to go away, watch your eating because you do feel hungry and drink lots of water -- it helps with dry mouth and its good for you to. I hope this continues for me -- I have a kind husband and wonderful family and friends who have helped me and not to mention a lot of prayers. One thing I learned is not to take things for granted. Be your own advocate -- When the doctors said "No" to vulvadynia and yes to anything else that would cause it -- I pursued my gut feelings til I got to the right place. I hope anyone reading this can get help from my story or at least some hope. Hang in there and I'll keep praying.
CommentI recently came across some articles on vulvodynia regarding the association with lupus and allergies. I'm wondering if anyone has lupus or severe allergies, and if so if your vulvodynia is being treated differently b/c of this, and if your doctor attributes the vulvodynia to these issues? I have been diagnosed with lupus, though I don't show the typical symptoms, i'm wondering if my vulvodynia could be a symptem? Also, i've had severe allergies for years, enough to have sinus surgery about 4 years ago. My allergies are now not as severe, but still pretty bad. I'm wondering if that could contribute? Any experience in these areas would be great, i'm currently trying to get into see Dr. Stewart who wrote the V book, but her application process to become a patient is quite lengthy and after over a month i haven't heard yet. My current doctor treating me will not return my calls and her nurse tells me to "discuss them at your next appt." Which happens to be in two months, and i'm in pain!!! Thanks!
CommentIn response to the posts about about no gyno's not delivering babies and them being too busy delivering babies to deal with us...the doctor that is currently treating me for vulvodynia does not deliver babies. She must be too busy doing something else though, b/c she won't return my calls! I'm currently trying to get in with someone who specializes with vulvodynia.
CommentIf you have been diagnosed with vulvodynia, you might actually have pelvic floor musculoskeletal dysfunction (PFMD); women with PFMD are often misdiagnosed as having vulvodynia; please log onto www.pelvicpainmatters for an article explaining why this occurs. I am currently collaborating on a book about chronic pelvic pain caused by PFMD with one of the best Urogynocologists in the country, Dr. Karen Noblet, MD and one of the best physical therapists in the country, Julie Safman, D.P.T. Both practice at the University of California, Irvine. Please visit our site at www.pelvicpainmatters and leave your comments and questions. Be well, Bonnie
CommentHello, I suffered with VVS for a year. Nothing helped so far and I am miserable. I have seen a number os "specialists," they could not help either. I don't have any wisdom to give. I just want to share my experience with two doctors in the hope it will help others to avoid wasting time or, at least, to deal with similar situations more effectively than I did. I don't mean to question their knowledge or ability. I am sure these are great doctors. I am merely reporting my personal experience that, perhaps, is not representative. Six months ago I saw Monica Peacocke in New York. She put me on mega doses of Vitamin D and made strong representations that my conditions would improve. I saw her a few times and she continued insisting on the Vitamin D. Unfortunately, I saw no improvement at all. I have now an extremely high level of Vitamin D in my system and she has not been able to give me a timing or any real information about when and how this wonder cure is supposed to start paying off. Three weeks ago, after a 3 months wait, I saw Elizabeth Stewart in Boston. She saw me on one of my rare "better" days. I went with my husband and we both explained how bad my condition normally is. She seemed to listen but then told me that I was on my way to recovery, Told me to continue taking Elavil (which I have been taking for 3 months and helped a little) and told me to use Clobetasol on the irritated area. I told her that I had used Clobetasol before and it had not helped but, in fact, made me worst. She said it was because I had used a cream rather than an oinment. I did what she said and after 3 days of Clobetasol I reached a new level of pain and burning. I called back a couple of time asking for help. So far they have returned my call but everytime I have to talk to a different nurse and repeat my story. Stewart is evidently too busy to come to the phone. I get a lot of sympathy from the NP but so far their suggestions have not helped and I am worst than I ever was. We don't need sympathy, we need serious doctors who evaluate all the information and thinks about our individual cases. I hope other will have better luck than I did. Fi
CommentI feel terrible that you have suffered for a year. Has anyone recommended Lidocaine 5% ointment nightly? You apply some to the area and then use some on a cotton ball and put it right at the entrance of the vagina. Try to see if you can see a urogynecologist or any gyne who specializes in pelvic floor dysfunction or pain. DO NOT GIVE UP!!! and don't wait forever for an appointment -- I was very persistent. I'll keep you in my prayers and there is help for you.
CommentTo Fi: Dr. Peacocke is another example of an expert who doesn't know and can't prove the cause/causes of Vulovdynia but is willing to offer a treatment/cure. Cream or ointment if it was going to help it would have. These guessing doctors and my wife applying Estrace to heal a recurrent tear and it never helped because she was never deficient in Estrogen! The suggestion of pain relief makes the most sense along with renewed hope for the future. Stop spending hundreds of dollars to see a guessing expert and ask your gyn or md for some pain medication. Stop the mega doses of Vitamin D.
CommentDear Fi, Don't give up. You need to see a urogynocologist who is an expert on pelvic floor dysfunction; your pain might be caused by muscle spasms within your pelvic floor; please check out my blog on the topic: www.pelvicpainmatters. Oftentimes, the culprit of VV are compromised nerves and muscles of the pelvic floor. Best to you, Bonnie
Commentto Fi - I have no answers to help you as I suffer also. I also can't tolerate the cortisone creams. The times I have been told to use them for various problems make things 100% worse for me. It takes about 3 weeks after stopping using them for the burning they cause to subside. A gyn. told me that the ointments are more gentler than the creams. I don't think cortisone creams should be used on that area at all. I think that the doctors just haven't a clue but feel obliged to give you something to try. As for the vitamin D, in all the info I have read re this condition, I have never heard of anyone given vitamin D before. In too large amounts it can be toxic, read that it reduces inflammation, maybe thats why you were given it. If I were you, I would stop the vit. D and the cortisone cream.
CommentI recently had a doctor tell me that I have Vulvodynia, and she encouraged me to look it up on the web to see if it sounded like the type of pain I experience. I was thrilled that she had a name for the unusual pain I have had since I was a teen (I am now 31), and felt a small glimmer of hope that perhaps there was some cure (or at least a possibility of partial relief), but the more I look through this and other websites, the more I feel that Vulvodynia is not the problem I experience. So let me explain. The only time I experience pain is during orgasm. It is an extremely intense pain that is very sharp and steady, increasing in intensity the longer stimulation continues. The pain is centered around my clitoris, but if it goes on long enough, I can feel it spread throughout my pelvic area up up through my stomach. I have always felt this pain. I have never experienced an orgasm without this pain (that means by self stimulation or by any type of sexual act). I do not have a yeast infection nor am I prone to them (I've had two thus far in my life). I do not have IBS. I don't believe I have an inflammation. It does not hurt to touch my clitoris or any other area around the vulvar. I do not have any pain during sexual experiences until I reach the point of orgasm. I have yet to find anyone who has ever heard of a problem similar to mine. I have had doctors tell me it's psychological. I have had psychologists tell me it is physical. But mostly I am ignored because my symptoms are so bizarre and unlike anything anyone has heard that it just can't possibly exist. So, has anyone here heard of or experienced something similar to my problem? Even if there is no cure, just the knowledge that at least one other individual in this vast world has experienced the same pain as I have would make me feel a thousand times better and just a sliver less alone.
CommentTo Fidget: The pain you experience during orgasm is probably rooted in the nervous system. I'm positive other women experience the exact pain, but you would have to find a neurologist who was open minded enough to discuss this event. Many doctors have a problem when the discussion goes from the clinical to the sexual, and orgasm is a sexual topic. We look at doctors as if they are machines but they are people like us and many have their own level of shyness or discomfort in this area. I'm a fifty four year old married man and I read and post here because of my wife's history with Vulvodynia. Last year I went to the urologist who treated me when I had kidney stones because I began to have spasms in the upper areas of my thighs when I would reach orgasm. He sent me for an ultra sound and said nothing was wrong. He really did not want to go any further in helping me find an answer. I would have to find a specialist who deals with sexual problems and they are not easy to find. I think part of the problem with having Vulvodynia properly researched is the attitude our society has in discussing sex on an intelligent, adult level. Men get Viagra and tv commercials openly pushing this product but there is very little when the topic turns to women. Words like Vulva and Clitoris are worse then profanity to many people and that is tragic, it keeps people ignorant to their own bodies. I think from how you described what you feel that it is physical in nature and may be the result of genetics ( have you discussed this with other women in your family?) or it may be the result of a childhood trauma that caused some scarring or nerve damage. If you want an answer, don't give up and talk to doctors who work with people who have sexual problems, they may be your best hope. Good luck.
CommentHi there. I am 33 years old and have suffered from vulvar vestibultis since I was about 18 years old. I had four surgeries in the late 90's. None of them worked. I tried medications with bad side effects, creams, ointments, and biofeedback. Still no success. I have been to dozens of doctors. One doctor finally told me that I would probably not get better without having a vaginal birth to stretch out my vagina. After my third vaginal birth I had some relief for a short time. I was able to have sex with my husband without crying in pain. Still uncomfortable, but not awful. Then I developed a sore that would not go away. So I had surgery to remove it. The surgery left me with a swollen bartholin cyst and continued pain. I am scheduled for yet another surgery and am not sure if I can do it. Every time it has left me worse than before. I just want the stinging and burning to go away. Any thoughts? I have tried everything in the book. Will a sixth surgery give me some relief?
CommentFidget, I think you have a muscular-skelatal problem. Another woman once described something similar, and when I talked to my physical therapist about it, she said, yes, that it is actually the orgasm that triggers off muscle spasming that causes this pain. I think you should really be evaluated by a pelvic floor specialist.
CommentI've been suffering for almost 5 years now - I've accepted most days that I am going to live w/ vulva/buttock stinging pain for the rest of my life...be on 3 nerve pain meds for the rest of my life...take a soapless shower for the rest of my life, have scheduled sex for the rest of my life... Then there are other days where I check this website hoping to try another approach or a cure!! On 4/5, I read Jessie's entry and thought to myself, "I haven't tried a chiropractor .. what's some more money flushed down the toilet". A co-worker saw a guy who uses the Pro-Adjuster computer system that cured her sciatic nerve problem. I saw him and explained my nearly 5 year battle. First impression; he listened carefully to me, showed compassion, and expressed utmost optimism and enthusiasm on my condition. And was very comprehensive during my visit. Today, was my first adjustment. He explained everything he was doing, provided education and again, lots of positive reinforcement. And the best part, he called me this evening to see how I was doing?!!! My insurance covers all but $8 per visit - did I die and go to heaven???!! All of the information I've read talks about the nerves. I've already done the muscular skeletal work during my years of PT (pelvic floor dysfunction). The chiropractor explained that my sacrum is 'crunched' - from sitting at work coupled w/ all of the stress. This resulted in my pelvic floor dysfunction --> VV. That's why the years of stretching hasn't cured me. He's confident by adjusting my sacrum - the delicate nerves will become healthy (not pinched) and improve the muscle elasticity, loosen and lengthen. has anyone tried the Pro Adjuster?
CommentLiz, How long were you on cymbalta and physical therapy. What mgs are you taking. Are you still on them? Do you think they helped, perhaps I will try them. My doctor said it helped a lot of her patients. Did you have any side effects. I am so afraid of side effects. What do you think make it come back? Are you planning to do anything else or are you still going to the PT. Appreciate responding to me so I can get some info. Pls e-mail me if you wish so we can exchange ifo. Thanks so much Liz.
CommentLiz, How long were you on cymbalta and physical therapy. What mgs are you taking. Are you still on them? Do you think they helped, perhaps I will try them. My doctor said it helped a lot of her patients. Did you have any side effects. I am so afraid of side effects. What do you think make it come back? Are you planning to do anything else or are you still going to the PT. Appreciate responding to me so I can get some info. Pls e-mail me if you wish so we can exchange ifo. Thanks so much Liz.
CommentHi, I have a dull ache after orgasm that does not resolve for weeks. My vestibule is always red and sore. There is a tingly itch and stinging sensation also. I know it is not an infection this is a chronic problem. I am 6 months pregnant and it has gotten so much worse. Help
CommentTo Talia: You didn't give enough information from which to offer suggestions but here are some thoughts. If these symptoms did not start until you were pregnant then you can hope after you deliver your baby things things will return to normal. There's a chance if the symptoms have gotten worse that hormone levels are playing a part or the pressure caused by the growing baby and fluid are inflamming nerves in the area. I could go on guessing which is what most of trying to figure out Vulvodynia is all about but that won't help you very much. There's also a condition in which some women are allergic to their mates semen and it can cause itching, burning and other problems. Of course now is not the time to start taking medicines so you might get some relief from ice packs on the area and if you are still using soap, stop and only wash with water. You have to avoid anything that can irritate the skin. Good luck.
CommentI am 63 yrs old, and have been in severe pain for a year now. I have been to 7 Doctors, currently the one I am now seeing is an expert.or so they say. Next week will be my 3rd visit with him. I am still in terrible pain.I am on Gabapentin now(helps a little) last visit put me on a low oxilate diet. next he is talking about a physical theropy, In my case you can visably see the problem I have a hole in my vestibule wall, all around my uretha,so to my mind I will never be well until it is fixed thru surgery..but it seems I have many more months to suffer, I don't think I will ever be free of pain again. can't sit ,can't walk, can't go anywhere, have to have icebag with me. Maybe like All Creatures Great and Small, there comes a time to put the old dogs out of there misery...Any older ladies with my problems???
Commentto Talia - sounds like you have what everyone else has, sorry, but go see your doctor.
CommentHey, a couple of times people here have mentioned applying lidocaine cream at night, and using it with a cotton ball. Is this supposed to stop the vulvar pain completely even when you've stopped using it, by re-programming the damaged nerves or something? I've been diagnosed with vestibulodynia, which is provoked pain on light touch (unlike a lot of the ladies here, who seems to have generalised, unprovoked vulvar pain). This means that I am pretty much pain free except when I attempt intercourse, so I was advised by a gyn to apply lidocaine cream 20 minutes before sex. I am able to have painfree intercourse in this way. However, I don't want to have to 'plan' for sex for the rest of my life, so do you think nightly applications of lidocaine would be beneficial for me, and do you know how its supposed to work long-term? Thanks.
CommentTo T123: The Lidocaine treatment does need to be maintained to deaden pain. Whatever has caused your pain needs to stop. One important point is that by breaking the cycle of pain, you also prevent the anticipation of pain which can lead to more problems. My wife never used this method personaly because her pain was/is the result of thinning skin and a tiny recurrent paper cut like tear.
CommentThanks to Dr. Glazer for keeping the archived guestbooks available for viewing. God this is a weird condition! It would be good if some of the people who have posted years ago, if they are still around, to post again to let us know if they were "cured", improved or still suffer, it would be beneficial to all.
CommentTo Linda: I've been reading and posting here since Guestbook Thirteen, eight years ago. I have been lucky enough to read the stories of many brave, smart and strong women. I know that some were able to become symptom free as a result of changes in diet, certain medicines, and for some either physical therapy or surgery. There still remain many women who whose symptoms were not treatable, I hesitate to use the word cured. The issue of thinning skin remains a problem for women who are not lacking in Estrogen, Lichen's sclerosis remains a big problem with I believe only one medicine to help relieve symptoms. I believe many women who no longer suffer tend to drift away from the Guestbooks. Depending on your symptoms there are things to try in order to find relief. Read past Guestbooks, try not to further inflame problem spots, don't mix medicines, try to stay strong. I hope we hear from some of the ladies who have found "cures" and if not I hope all of you reading now become pain free and post your own success stories soon. Take care.
CommentTo Linda: I've been reading and posting here since Guestbook Thirteen, eight years ago. I have been lucky enough to read the stories of many brave, smart and strong women. I know that some were able to become symptom free as a result of changes in diet, certain medicines, and for some either physical therapy or surgery. There still remain many women who whose symptoms were not treatable, I hesitate to use the word cured. The issue of thinning skin remains a problem for women who are not lacking in Estrogen, Lichen's sclerosis remains a big problem with I believe only one medicine to help relieve symptoms. I believe many women who no longer suffer tend to drift away from the Guestbooks. Depending on your symptoms there are things to try in order to find relief. Read past Guestbooks, try not to further inflame problem spots, don't mix medicines, try to stay strong. I hope we hear from some of the ladies who have found "cures" and if not I hope all of you reading now become pain free and post your own success stories soon. Take care.
CommentIn looking in some of the past guestbooks, I have come across some comments about a Dr. Richard Reid, one which said formerly of Michigan now practising in Australia. One said he was sued, another said he lost his licence to practise in USA.. I was actually given a referral to see him in Oct. last year by the 1st gyn. I saw. The gyn. said he couldn't help me any more and said Dr. Reid was a world renowned expert. I just presumed he was an australian dr. I actually rang and made an appt. Had to wait about 3 weeks. His practice was in the ritzy part of Sydney and his fee was higher than the usual gyno's. But in the meantime I started using Vagifem and started to improve. So I cancelled the appt. If this guy is american, how can he lose his licence there then come over here and practice. Has anyone seen him either here or in USA and have a comment.
CommentJust adding to my last comment. Don't get me wrong, I'm not trying to slur this doctor's reputation in any way. It's just weird to be browsing through a guestbook and suddenly a couple of disturbing comments pop up about a dr. you were going to see. I still have the referral from the gyn. to see him. He is the only one I am aware of that specialises in that area in Sydney.. I have Googled and no other names appear. You USA people seem to have a lot of vulvar specialists over there.The comments I came across were in guestbook 16, one by Marilyn dated 3/7/2001 and another by Cheryl dated 4/6/2001. Anyone out there from Sydney, there is a derm. that specialises in the vulvar area in Chatswood, her name is Gayle Fischer.
CommentSo it has been two weeks since my sixth surgery for vulvar vestibulitis and well as a drainage of a bartholin cyst. It has been an awful recovery and have gone through so much vicodin. I am now experiencing an awful deep aching and throbbing in my entire vulva. Could this be a symptom of vulvodynia, or just a recovery from surgery. I have never taken this long to recover and am so fearful that the surgery will make things worse. I guess it will be a few more months before I know. Anyone out there had multiple surgeries? How was your recovery?
CommentFrank, I noticed that you have been posting for quite some time. You mentioned your wife had/has "paper cuts" at the 6 o'clock position.... has she found any relief over the years? If so, what has helped? I have had this for 2 years now and am trying or have tried a number of things... courious to know what you have found! Thanks
CommentTo Paige: Yes, I've been posting for a number of years and I'm glad you asked because I have some important information to pass onto the ladies here. To sum things up shorty after I saw the papercut like tear and not her gyn, he performed surgery to repair a rectocel ( buldge of the rectum into the vagina) and to reattach some muscles damaged by several episotomies and to form a new scar. Mind you she had been pain free and free of this tiny recurrent tear for eight years after her last delivery. Following the surgery he had her apply estrace (estrogen) cream daily as we abstained and allowed her to heal. I believe it was eight weeks later that we attempted intercourse and it was with plenty of foreplay and lubircant, but she tore again! Since then she has seen numerous gyn's and tried many ointments and creams, none of which have helped. She has not used any medications to resolve the tearing and thinning skin for several years and we have come up with some strategies on our own. On her own she is very careful how she either wipes herself of if she is itchy down there, how she scratches to prevent causing further damage. We will use simple mineral oil as a lubricant regardless of how naturally lubricated she is( I explained to more than one gyn that the problem is not lack of lubrication but rather the frail nature of the skin itself) and have refrained from mnay of the sexual positions that put pressure on the six o'clock position. I am very careful to bear my own weight and not get too forceful, this takes a certain level of control and discipline. You and your partner need to deal with this condition together. On a more serious note, and there are more serious things, my wife had surgery two weeks ago for breast cancer (lumpectomy). The surgeon side the tumors were estrogen sensitive (good news because they can be deprived of estrogen with medication). Bad news was the surgery, and chemo and radiation in the coming weeks. My suggestion to you is to not be a guinea pig for a doctor who has no idea of how to Cure or treat this mystery illness. Do not take unnecessary medications that can negatively impact some other part of your body and cause you more problems down the road.
CommentFrank, Thank you for your quick response. I had the paper cut tears 11 years ago. My doctor diagnosed it a vulvar vestibulitis. He did surgery to remove this tissue. Full recovery until 2 years ago when I was trying to treat what I thought was a yeast infection... th burning came on strong and has not yet gone away. The paper cuts have returned. I visited with a Dr. who specializes in vulvadynia(he writes for VVA) he put me on a low oxalate diet, calcium citrate and amitriptaline. The burning is a little better, however the paper cuts make being with my husband next to impossible. I am having surgery in 2 weeks to remove tissue that has VIN (precancer cells) the oncologyst said that he was going to remove ALL affected tissue along with the paper cut area. (cells were present there as well.) Thank you for being so open with your thoughts. Best wishes to your wife as she deals with breast cancer.
CommentTo Frank - just on a personal note, I'm so sorry to hear about your wife. I remember on a earlier post you mentioned she was having tests. As if she hasn't got enough problems already with this other thing. Stay strong for her. I wish her, you and your family all the very best for a healthy future. Take care.
CommentTo Linda & All: Thank you for the kinds words and silent good wishes. This is another facet of our lives and we will face it together. I am here for my wife as always with open arms and heart along with occassional arguments. I am confident she will have a good result when this is all over, and as difficult as the next four months will be this too shall pass. My wife has a pretty good atitude so far and I am doing my best to have our daughters pull together and help matters, but this is easier said than done.
CommentHi All, I posted several years ago, and thought I would share what has helped me. I take cymbaltra 60 mg and Neurontin 200mg at night and 100mg in am. I have been dealing with this since 1998. These meds have helped but I still have occasional flare ups. I try to do yoga, exercise, keep stess level down as much as possible. I have been in a flare up last several weeks and wonder if anyone knows of a good Dr. in the Phoenix area. My Dr. is no longer practicing. This is a very difficult disorder but there is hope, keep reading and trying until you find the combination that helps you. There is no one size fits all! Laughter, ice, and Jesus have also helped me through these last ten years!
CommentI just did a post and my full email address did not appear. If anyone has a good Dr in Phoenix, AZ area... and a good Physical Therapist that has experience with pelvic floor muscle therapy. Thanks!
CommentHello. Was wondering about your opinions about this numbing cream EMLA that have been mentioned here before, and how it worked for you. How you applied it properly. Any thought on it at all. Anyone that has an opinion about it is free to email me, cause Im really interested in knowing what your experiences are.
CommentWent to see a derm. who specialises in the vulval area yesterday. Waited 3 months for the appointment.After having a good look and poke around and listening to my story and reading the test results from the gyn who did biopsies,blood tests, she looked me in the face and said "you have a condition called Vulvodynia". I said 'I've heard of it", (oh yeah) She is the first one of the "don't know" drs. I have seen except for one, who said I had Atrophic Vaginitis, who has given it a name. Anyway, after having time to reflect on how the appt. went, I am not happy. She wrote out 3 prescriptions for 3 different antidepressants. Said if the 1st one doesn't work then try the 2nd one, if that doesn't work try the 3rd one.She asked me if I had lower back pain or ever been in a car accident, which I haven't, but during my life I have had a couple of times of problems involving my lower back (who hasn't).She recommended I see a pelvic floor physical therapist - said trapped nerve that runs into vulval area - and that was it. I have had an area of itching, sometimes severe in the 11,12, 1 o'clock position since 3 weeks after the biopsies, when I noticed a substance there (mainly just into the hairline). I thought it was thrush but saw dr. to confirm. He said it wasn't thrush, it was dead skin cells and told me to use a cortisone cream. The cream got rid of the substance but the itch has stayed in varying degrees of severity ever since. He never did a test to find out what it was. She examined that area thoroughly but didn't recommend anything to help. I would have been happy to have a biopsy or anything else, as I said to her I was thinking it might be thrush that had gone under to skin or one of the Lichen diseases. She said no.The previous biopsy was done in the 6 o'clock area. So $200 later I still have no answers.Don't they GET IT. It's a PHYSICAL problem, not a mind one. It's like giving my 17 year old son antidepressants to get rid of his acne. As far as I'm concerned, they can take their s--t tablets and stick them up their a---.. Sorry if I have offended anyone, but that's how I feel. As for the trapped nerve, maybe she's right, but I'm not taking the tablets. That's how I feel at the moment anyway.
CommentTo Linda: In a word "No", they don't get it and that's the problem. The dr. who asked if you had been in a car accident was repeating what she had read about Vulvodynia and trauma, it seems that auto accidents can trigger this pain. The experts decided that antidepressants acted to "calm" the inflammed nerves that cause redness, itching and pain, although like yourself I think they act to simply sedate the complaining female. I can understand the theory of trapped nerves due to trauma at some point in your life but that does not begin to explain the many symptoms including thinning skin and tearing not related to lichens. Just having a dr. perfom tests is a small victory, when I asked if our family dermatologist treated Vulvodynia patients I was ignored at first and then made to feel as if I was out of line somehow. I believe it will require a concerted effort to bring attention to this problem and get the needed research and treatments. Try to not get upset but rather understand your doctor's ignorance. The problem is shared by you the patient who is suffering and the doctor who is at a loss to understand or help. Please stay strong and see the bigger picture, you are not alone and this is a big problem that will require big answers. Take care.
CommentI wrote a few weeks ago to let all of you know my story. Now I have a question for anyone who has this condition. I have vestibulodynia and I am currently using Lidocaine at night and Elavil 30mg. I just noticed the last 2-3 days that I am feeling a "sandpaper" feeling like I had before I started the Elavil. I am certainly not as bad as I was originally but I seemed to have regressed a bit -- I'd say from feeling 80% better to 50-60% better. Has this happened to anyone and did you take more Elavil? Just thought maybe someone who has this could share some info. I was just to the Doctor last week and was feeling wonderful and now this -- I just ovulated a few days ago and won't get my period for another 10 days and I'll certainly call my Doctor if this persists. Thanks for any feedback.
CommentHello - I have had vulvodynia, generalized, for 4 years. Elavil helped for a while with the pain but made me feel horrible otherwise. Plus, I kept needing to increase the dosage in order for it to work. I started at 5 mg and by the time I hit 100 mg I decided to stop. I tried acupuncture but it did not work for me. I am currently going to a physical therapist for myofascial release therapy and after three sessions feel an enormous decrease in pain! She says that I have a lot of scar tissue built up from some trauma (which can be caused by accidents, sex, or even body positioning or movement that otherwise seems normal) and we are working to release it through this technique. While she is working it out, I really feel the areas of pain, and afterwards, there is so much less pressure. I feel pain free for days and then it starts again. That is typical and she tells me that over time I should have to go less and less until it goes away. Oddly, I had so much pain in the labia, mons, my legs, anus, etc before but since they are all interrelated, the pain there has greatly subsided since these treatments. I believe it was Sharon that recommended this treatment back in the winter and I am so grateful to her. I will continue to go and update in a few more weeks but please email me, anyone, with any questions on this technique. Luckily I found a practitioner that takes my health insurance!
CommentI suffered from Vulvodynia for about 2 years. I have now been free of it for the same length of time. I'm not entirely sure what made me want to post, or even look for this site - I suppose a part of me felt I should help someone else get through it. I don't exactly remember how it all started but I had the most terrible pain during sex and after a few months of it I realised I had to see a doctor. I was terrified but I was afraid something was really wrong. As I already had a skin condition (psoriasis) on other parts of my body, the doctor initially attributed the pain to this. I kept going back, being given about 5 different creams, some of which were very strong, but nothing helped and I was becoming increasingly unhappy. My doctor told me that the symptoms I had were consistent with someone who had been abused but I had no such memory of this. She was unable to test me for anything because my muscles tightened so badly when she tried that there was nothing she could do. After over a year of this she finally referred me to the hospital. This was when I found out what I had but was basically told that they did not know how to cure it and gave me a leaflet saying that if it was incurable they could refer me to a counsellor to help me come to terms with it. That was probably the worst thing they could have said at that point. After some very painful testing and establishing that I had a rather severe case I was given some dilators to try and train my muscles (which did not help), some anaesthetic cream that they give to bedwetting children - in the hope it would numb the pain (that also didn't work) and then eventually increasingly large doses of an antidepressant called Amytriptyline They had discovered that amytriptyline did not work for treating depression but that it helped nerve disorders. What they did not tell me at the time was that it had caused children to become suicidal, it was that ineffective. Before knowing this, I took the tablets and fell into an awful state of mind - I had practically given up. I was destroying my relationship and I didn't know what else to do. I went back to the hospital for my usual check and they popped the 'I think you should see a psychosexual counsellor' card. She had given up too. I burst into tears in front of her. The silly woman just kept asking me what was wrong - as if everything should be just great. I refused to go and said that I would stick to what I was doing. I did something I shouldn't have and took myself off the tablets (I did it slowly so I didn't shock my system). I felt better emotionally but the pain was still there. A few months later, I left my partner and started a relationship with someone I had been close to for years and trusted implicitly. Overnight I was feeling 80% better. I still get moments even now when my muscles tighten for no reason, but I can control them now. I went to the hospital for the last time and told her what I'd done and that I wouldn't be coming back. I still don't know quite what happened. I like to think that my heart somehow knew I was with the wrong person and forced me into seeing it. Perhaps I just needed some faith and an understanding partner. All I know is that I had to tell you that I found no cure from medicine, I found it from believing that I could and following my heart. We are still together and nearly every day I think of how lucky I am that we found each other and he found me my cure. I'm sorry if that all seemed very silly but it is a true story and I hope that it gives someone out there a little faith.
CommentHi, This is probably the 4th time I have submitted. I have had vulvodynia for almost 2 years now. It seemed to have started with a yeast infection, that was probably overtreated, I was in such pain could not sit down with searing pain going up vagina. My gynocologist after many visits decided it was the Big V, and told me "This is the Cross that I will have to bear". Oh I was ready to kill him, he did however refer me to a dermotolgist who treats this, we went through meds,creams etc---My insurance did not pay any of this, and I was disgusted because I was 57 and very active in sports,bicycling,kayaking,basketball etc. Incidentaly at the time I had not gone through menopause. could not wear jeans,have sex basically was very depressed etc. I finally asked if I could change doctors and go to someone closer in Asheville,N.C. and she said yes, she had worked with her. Well I did go to Dr. Kiran Sigmon and found her most understanding, she referred me to her midwife who has been trained in physical therapy. I have stopped Cymbalta(I at one time was on Effexor, oh what sideaffects when you stop!!) I now take 50mg of Elavil and do my exercises. Basically I do Kegels, hold for 3 seconds and release(they are called flicks). Started with 10 of those, then move to holding it for 15 seconds and release. I also use a towel, put between my knees and pull up, do that 10x. Also put ice in a face cloth and apply to vagina at different locs, only use for 1 minute each place. I do use Lidocaine on a cotton ball and go to bed with that at the opening of vagina(2%). I do feel much better, of course it is not a cure, but certainly better than I was, I am able to have sex, and able to wear shorts and jeans, but I try not to do it for long periods. There is still some prickly feeling,especially when I don't do the exercises. Also 3x a wk I put Estrace the size of a fingernail amount up the vagina. I know how depressing this thing is, believe me I was just laying in bed feeling sorry for myself. I defintely feel there is a mind, body connection. Hopefully this will help you and just hang in there!
CommentThanks for writing Diana, because like you I do feel better with Elavil and Lidocaine. I recently had to increase the dose of Elavil to 40mg and I seem to be better again. How long have you been on 50mg? Also, how did the midwife decide you needed to do these exercises? The Gyne I see has checked me on several occasions and each time when she does an internal she asks if I have pain when she presses on the muscles in that area and I have not had any pain during the exam. I did not have intercourse until about 1 month ago but did not have any painful intercourse prior to all of this and when I felt so bad we just abstained for fear of making things worse. Diana if you could write back I'd appreciate your thoughts. I too get a prickly type feeling in the vulva. On a good day it is an annoyance but can be forgotten and on a bad day I'm still better than prior to diagnosis and early treatment. Thanks.
CommentHello, I have been in terrible pain for more than a year. Everything started 2 months after I had an hysterectomy. I kep an ovary so I am still ovulating. I can't have sex, wear jeans or pants, and walking or sitting are often painful. I tried several things and various doctors (including some specialists...) but nothing really helps. Since January I have been on Elavil. It helped for a few months and I felt much better. After a visit to a so call specialist who prescribed the wrong things, I got back to square one. Now I am up to 30mg. of Elavil but it doesn't seem to help much (I can't tolerate more than that.) I have an irritation around the entrance of the vagina and I can't get read of it. The last specialist gave me a corticosteroid that made me way worse. For the ladies taking Elavil, do you have the irritation too? Can you have sex? How do you do it? Lidocaine? I will welcome your suggestions. I am desperate. I have lost hope and I don't know what else to do. I would never have believed to have such thought but now I spend my nights crying and wishing I will not wake up. Sorry I am venting. Thank you for any suggestions. A
CommentHello all. I have not been on this site in years and I'm home alone on this memorial weekend and I decided to log onto this site to read new recent posts. I figured if I can help someone with my story, I will. I was diagnosed 9 years ago. But my pain started when I began a special diet. I was trying to eat healthy, staying away from fast foods and only eating wheat, whole grains, drinking lots of 100%juice....well about 6 months after starting my diet, I began getting the pain and lots of yeast infections. I had also just ended a very bad relationship when my pain started. After seeing numerous of doctors for 2 years, I finally was diagnosed. But no dr. ever informed me that it was my diet causing me pain. I learned that on my own. So I stay on a regular diet, except I harder eat wheat, whole grain daily. I only eat it aprx once a month. and I try to stay away from sugar as much as possible. I drink plenty of water to keep myself cleansed. and no vulva pain. some of you should try changing your diet, get on some good probiotics if you constantly keep getting yeast infections and get on a wheat free, low oxolate, low sugar diet. good luck to you all! and one more thing, try now to stress. The more you stress, the more pain you have down there.
CommentHello -- this is for Assunta -- I have been taking Elavil and am now up to 40mg and feeling relief -- not perfect -- but better and acting normal again. I also use Lidocaine at the entrance of the vagina nightly. When my doctor performed the q-tip test last visit it wasn't painful and I am able to have sex, sit and wear jeans. I use the Lidocaine 5% with no problems. I asked all the ladies a few days ago how many had a wearing off effect of the Elavil or does it finally kick in for a longer period and then you can wean yourself off -- this is what the Doctor said should happen. So any advice would be great. There is also other drugs that have less side effects if you are having trouble -- how about Pamelor? Hang in there and keep on trying.
CommentHmmm....I've had this for 31 years....tried everything but surgery. I've had it under control for about the last 8 years. Yes, I can have sex now and I only occassionally feel a small amount of pain and itching. I've improved about 85% since I started learning about what i could do on my own. I learned a lot from this website years ago. My top 3 picks for treatments that worked for me are 1) boric acid vaginal suppositories (3Xper week), 2) reduction in stress (yoga and a few less working hours) and 3) sugar free, grain free diet The thing that helped the most was the diet change. I would recommend trying this. Eat nothing but organic meat and cruciferous veggies for one week. Eliminate sugar and carbs completely except for the veggies. Eat a lot of those. The second or third day, expect to get withdrawl symptoms like shakiness and sugar cravings. These go away after about 12 hours. If your vagina feels a lot better after this, then you know you are on the right track. If it doesn't, try something different. If nothing else, you should drop a few pounds and feel a boost in energy. I dare anyone to try this and tell me how it works. I'm so curious to see if anyone else gets the same miraculous result as I did. My pain level dropped so much right away that I would never in a million years go back to my old diet. If you think that a diet like this is bad for your heart, guess again. My lipid panel looks like I must be a vegetarian or something and my cholestrol has gone down about 30 points since I switched from a low fat diet about 8 years ago. As an extra special side effect, I now weigh what I weighed in my early 20's. (I'm 49). That's 82 pounds less than I weighed when I was 39. I eat lots and lots of coconut oil and coconut milk every day. Salmon and tuna are good for inflamation. I eat lots of nuts and I also eat full fat, (sugar free) salad dressings. I enjoy a great life now. Even my brain works better, I'm not in a "fog" anymore. I wish you all the best, I know it is a struggle.
CommentHello, I was just diagnosed with vulvodynia a few months ago. I have been on Neurontin (1200mg a day), but it doesn't seem to be helping, other than helping make me very very tired! Has anyone benefited from taking this drug? Also, does anyone know of a good doctor in Winston Salem, NC, or close by? Thanks so much! Abby
CommentTo Nancy, Sheryl, and Lynn, Thank you for your posts. My experience with Elavil has been mixed. I started taking it at the beginning of the year (30 mg) and by the end of March I was much better. Not cured, still no sex, jeans or pants, but way better than I was. Unfortunately, at the beginning of April I went to see a specialist. She put me on clobetasol and within 3 days I was back to square one. Following the "specialist" disaster I went to see my OBGY who found a brutal irritation and some yeast. I took some Deflucan. Since then, the visible irritation has abated and it would seem I am yeast free. Unfortunately, though, the Elavil does not seem to help anymore or, perhaps, it makes just a minor difference. Tomorrow I am due for a control and I will ask whether I should increase the dosage or switch. I would rather stay on Elavil since it did seem to help and I got used to it. Reading your posts, this is what I plan: - Continue the Elavil (perhaps a higher dose) - Start the no sugar, no grain diet - Start the lidocaine - Start the exercises - Drink tons of water and take citric acid I agree about the stress but reducing that it's easier said than done. By nature I am a rather relaxed, happy person. lately, I don't recognize myself. I cry every day and I am having a hard time just doing normal things. Of course, I am under a lot of stress but it is the result of the VV rather than the cause. Reading your posts, and your improvements, has been a life saver. We'll see how I am doing in 2 weeks. Keep your fingers crossed for me. For all of us. I'll write again and thank you for helping. A
CommentHi Everyone -- based on the answers that Assunta had received I think this proves that every case of VV has a different way of manifesting itself, what the initial cause was -- long term or sudden onset and what really can work for each individual based on findings and cause. I have looked at hours and hours of info on this subject and have spent lots of time talking to my doctor as not only a patient but also as a Nurse. I want to help others because this problem can cause so many problems -- like depression and anxiety. I once had a Nurse Practicioner tell me that we shouldn't have to think about "down there" and you know what she is right. I never gave it a thought until all the trouble started -- not that I was reckless or careless but I never thought about what kind of chair I was going to sit on and what kind of clothes and fabrics were more comfortable. It made me a basket case. I think for all of us we need to take all the suggestions and find what works, the hardest thing is to find a physician or healthcare person (Phys Therapy, Nurse Practicioner, etc) that will take the time and pay attention to us. I have been under a lot of stress over the years but this problem took the cake and there are still days I ask "why me" but I try to remind myself that I can't let this get the best of me. For all of us sufferers we can only hope to find a place of comfort and relief and not focus on perfection. Hang in there everyone, I'm still praying for everyone and hoping that every day I have a "good day" Keep posting ladies.
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CommentThis is great to find this website. I have really needed someone to talk to that could understand what I'm going through. I have been dealing with this for about 6 months. My doctor has put me through a battery of tests and has found nothing but one lesion. He has me on benedryl at night, I also take ambien so I can sleep. He has me using hydrocortisone ointment. It helped at first, but now isn't helping much. He prescribed Elavil. I took it one night and woke up feeling absolutely terrible in the morning. I couldn't even go to work. I told him I have alot of anxiety which I've been dealing with for a long time, but now it's much worse because of this constant pain. Then, if I feel better for a few moments and notice the pain is gone, I get anxious that it will come back and so it does. Because of the anxiety, he had me try celexa. I took a half pill this morning and felt terrible, then went on a crying jag. I need help and I don't know where to turn. I can barely function at work. I've tried to change my diet to a low-oxylate diet, but I'm not sure what I CAN eat, so I end up hungry. I don't eat much lately because I don't feel like it and I'm afraid I'll eat something wrong. Any help out there?
CommentHi to all members!!!!!! My friends call me dodz!!!!!! I came from Canada. This place is good to tour!!!!! _________________ ann Suffering from an addiction. This website has a lot of great resources and treatment centers. http://www.treatmentcenters.org
CommentI just posted, but here's another one. I found a website that sells a vulvodynia treatment plan, as well as calendua cream and calcium citrate pills. I have found the calendua cream on another site for less money. Has anyone had any luck with that? Another thing I read said they have had success with cream that has Capsicum in it. (Capsicum is from chili peppers). I got some and it says not to use on mucous membranes. I tried a little bit on one part of my vulva and of course, it burned like crazy!! The thing I read said it would sting at first but that they had some good results with that and diflucan once a week for several weeks. Has anybody heard of the capsicum ointment for this? Also, is this thing related to estrogen levels and menopause? I'm 52 and have been menopausal for about a year and a half. Thank you for all you have written, but after reading that many people suffer for years with this, I'm more hopeless than ever.
CommentDeb -- I have been suffering with this for about 7 months and have started contributing the last 2 months or so. This problem is very distressful and can cause a lot of anxiety until you start to feel better. Sounds like your Doctor has checked you over pretty well -- is he/she at all familiar with Vulvodynia? If not try to seek out a Urogynecologist or a Gynecologist that specializes in pelvic disorders and preferably not one that does Obstetrics. I don't know where you live -- I am in the Chicago area and have a good resource. Getting back to the creams and diets -- I have tried a few things and really putting all those creams can sometimes aggravate the problem. As far as the low oxalate diet it works for some and not for others. I found no difference. Problem with this disorder is that it causes a lot of anxiety which I feel causes the problem to be worse. Yes you feel better sometimes and then worry its going to come back. I still do that. I am on Elavil 40mg at night and Lidocaine 5% at night -- I feel so much better but believe me I still worry but much less. I lost 10 pounds and cried everyday until I found the right doctor -- I truly feel for you and wish I could do more. I have been a nurse for 25 years and been through 10 years of infertility treatments before all this and I pray everyday for a cure and I swore I would help anyone who I came across who had this. Do your research and bring it to your Doctor if you have to or find one who will listen. Believe it or not my regular Gyne I had for 20 years thought I was nuts and he called me the other day for the number of the doctor who is helping me now because he has a patient with a similar problem Hang in there Deb and you will eventually feel better and not always this bad. It takes some time but you'll hopefully get some relief when you get on the right track. Read through some of the later guestbooks and maybe you will find a name of a MD in your area you can contact. Goodluck and hang in there.
CommentDeb, I'm sorry you have to go through this... I have been suffering for about 3 years now. I can only tell you what seems to work for me, maybe it will help. I know you said the elavil didn't work... the first time I took it, it made me dizzy and sick. My doctor put me on 10mg and had me work up to 75mg. I take it around 7pm so it doesn't affect me in the morning. I also take 1200mg of Mucinex. This dries me up and pain is then bearable. I also take calcium citrate and I TRY to follow the low oxalate diet. You can find a list of foods that are high in oxalate on the VVS website. I hope this helps a little. Oh, my doctor did say that stress is a huge trigger for VV.
CommentTo All: Ladies, just a reminder that Estrace contains Estrogen and if you are predisposed to Estrogen sensitive cancer like my wife, you could be hurting your health. My wife had surgery for breast cancer about a month ago and is undergoing chemotherapy. She used Estrace cream several times over the last few years, it did nothing to relieve her thinning skin and tearing but it probably contributed to her cancer!
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CommentHi! I was diagnosed with vulvarvestibulitis just weeks after my honeymoon. I was a virgin when I got married and had always used pads instead of tampons--I do not have vulvar pain when nothing is touching inside my vagina--and so I was completely unaware of my condition until we were on our honeymoon. Needless to say, the pain I experienced came as quite a surprise to me as an eager young bride. I'm sure many of you can relate! My pain includes a severe stabbing pain during intercourse where the vestibule hits the back wall of the vagina. Since this was the first sexual experience for both of us, we actually thought we were doing something wrong! Well, it didn't take us too long to figure out that there was something else wrong. The pain was so severe that on the fourth day of our honeymoon we spent several hours in urgent care waiting for me to see a doctor. The urgent care doctor told me that it might be vaginismus but that I should see a gynocologist when I got home. My loving husband William spent two more hours of our honeymoon surfing websites with me to find out what vaginismus was and also exploring sites with info about other types of vulvar pain. The`description of vaginismus sounded somewhat similar to what I was experiencing, but only somewhat. The disgnosis didn't seem quite right to me, though. Will listened, and said that if I didn't think the diagnosis quite fit what I was experiencing, maybe I was experiencing something else that was similar. A half hour later we came to a site describing vulvarvestibulitis. As soon as I read it I said, "That's it! That sounds like my symptoms! I can point to specifically where it hurts. If I don't have this I at least have the same symptoms." When we returned from our honeymoon I talked to my mom. My mom recommended her gynocologist, Christina Holbert and I immediately made an appointment. I went to her gynocologist because my mom said she always listened. I went, and she listened! She let me explain that I could litterally point to where the pain came from and that it only hurt when touched. She let my husband be in the exam room with me and hold my hand while she touched me with a Q-tip. when she touched some places is felt like something soft was barely touching me, but when she touched others I screamed and then silent tears went down my cheeks. Again many of you can relate. what amazed me was that she listened to me even before she examined me and she didn't let the urgent care doctor's tenative diagnosis make up her mind for her. She diagnosed me with vulvar vetibulitis and drew a diagram for us showing us where it hurt. she also gave me lidocaine cream. On my second exam she actually showed my husband where it hurt and pointed the spots to him! That helped sooo much! Ladies, for those of you who have vestibulitis or pain in localized places but your husband hasn't been to the gynocologist with you, please try this! It is no cure and the pain is still there, but this helps a lot! Hopefully your husband is willing to go with you; if not, try to pursuade him and ask your gynocologist to point out which areas hurt. The diagram was helpful but this helped much more. As soon as my husband could physically see exactly where it hurt, he was able to avoid putting pressure in those places during intercourse. Well, for the most part anyways. This information may be helpful to other women like me who only experience pain in specific places during intercourse. I am well aware how blessed I am because people listened to me and I was quickly diagnosed. While a diagnosis of vulvarvestibulitis is still vague and is probably not a full diagnosis, it helps to have a husband, a mother and a gynocologist who listened. On June 18th we will be married for three years now and our sex life has certainly improved and so has my pain. I still have issues with severe pain but sometimes I'm pain free! I just wanted to share my experience with all of you. Also, I just moved to the San Francisco East Bay from southern CA and don't have a new gynocologist, yet. Can anyone recommend one? I live near Walnut Creek. May God bless you, Lindy
CommentI have recently been diagnosed with vestibulitis. I am just starting the process of "physical therapy" and am pretty nervous about the whole thing. Not to mention my marriage is headed in a bad place right now due to everything going on. Anyone have any advice?
CommentTo Rhonda: I am very sorry you are going through this difficult time. I hope you are not upset or offended that a guy is responding to your post, but I 've been reading and posting here for years and maybe my words will be of some help. Your first priority should be reducing your pain and stress in order to have a clear head for other important decisions concerning both your health and relationship. Don't think or let anyone tell you it is selfish to protect yourself because no one else is stepping up to do the job. Regarding your marriage and how these specific health problems cause problems, I have some suggestions. First make an effort to have your husband involved with your treatment and doctor visits, let him see and hear for himself how real this is and how he can be a part of supporting the woman he loves. I know it's easy for me to sit here and write this stuff, but I do believe it's true. Do not suffer in silence. I have read in past posts of married couples who have not had sex for years and while I believe them I know it will not work for most marriages. If your husband is a sexual, healthy man, he will want to be intimate with you and you must choose wheter or not you can somehow accomodate him and still protect yourself from pain and injury. Without being graphic or insensitive there are other ways to be sexually intimate and maintain a closeness in your marriage. The success of these alternatives depends on your desire to try and see if it will change things for the better, and your husbands willingness to appreciate the nature of your illness and your extreme efforts given the situation. You may need to accept that regardless of this health event your marriage may have been headed for trouble as is the case with most marriages. Encourage your husband to read some of these guestbooks, talk to him, but do not allow him to cause you more emotional or physical pain. Love should not hurt! He can respond here, or e-mail me if he would like to talk. Take care.
CommentLindy, I'm glad you didn't have to see a gazillion Drs. before being diagnosed. It's wonderful that you're having some painfree days now. What part of southern Ca. did you live in? I live in southern Ca. and was wondering which Dr. you saw that was a good listener. I hope you have more good days than bad!!!
CommentHi everyone, I just wanted to share some exciting news. On July 23rd, at 2:00 pm CST, my physical therapist and I will be on a 1/2 radio program on vulvodynia and vestibulitis. Anyone can listen in via their website, http://www.koop.org/ I hope many people can listen in, as my PT is such an expert that I hope she can answer many questions.
CommentHi, Wonderful site. It is very nice. i liked it. thanks =========== detta Problem With Drugs or Alcohol? This Drug Rehab has Helped Thousands of Individuals to Recover. <a href="http://www.drugrehabcenter.com">Drug Rehab</a>
CommentI am currently following a low oxalate diet and having a hard time finding a multivitamin that doesn't have things that would irritate or inflame... Does anyone have any suggestions? I am currently taking calcium citrate with magnesium and vitamin d... I have heard about ox-absorb but i am not sure i can take it with taking calcium citrate.. 4 tablets equal 1000 mg... ??? Thank you!
CommentHello all, I've been reading this guest book off and on for quite some time now. I'm sorry to hear that so many of you are in such pain. :( I can certainly identify- I've been suffering from vulvodynia myself since February of last year. As you might have guessed, my life is absolutely miserable right now. I am engaged to be married, and have no wedding date b/c I refuse to start a new marriage off with abstinence. I somehow think that a sex life will *never* be a part of my future- a very discouraging thought considering that I'm 26 and still a virgin. :( Life as I knew it will probably never return to me again. I have a question: has anyone on here ever travelled a long distance to get help for their vulvodynia? I ask because I live in a city where treatment options are few and far between, and knowledgeable doctors are almost non-existent. For those who have done it, how did it work out for you? Was the financial expense worth it? I am struggling with major guilt because I'm Canadian, and therefore will be paying thousands of dollars if I come to the States for treatment (government won't pay any of the costs). Also, I'm somehow under the impression that some women *never* get better from this disease. Is this true? Have I really been dealt a life sentence with no chance of parole? Because that is how I feel right now. Any advice you can offer is most appreciated. Sorry about the venting- I just needed to get this off my chest!!! B.
CommentHello dear, I've been suffering the vulvar vestibulitis, and the homeopathy has took me out completely. I know the french part of Canada believe more and uses homeopathy, why don't you try there? All you have to do, is to find a good homeopath, not monotherapist (they look for only one homeopathic remedie, and it might take lots of time before they find it.. also money!), then you have to be listened, in details. A good homeopath will cure your homeotype, not only the symptom. I know vulvar vestibulitis is not vulvodynia, but they are very close, and the reasons why we get it might be similar, if not the same. I've got it just 4 months after my marriage, so, my sexual life has been completely crashed in the middle of nowhere. Read all my entries, if you're interested. I know the pesimism you're feeling right now, and I also know that once you see the positive results of a good cure, you'll start getting back to your positive way of thinking. The vulvar vestibulitis and the vulvodynia are sicknesses we're producing by our selfs, in a result of the chaotic world we're living in. Stress, discrimination, injustice, you name it! I'm reading the books of Lise Bourbeau, she's canadian, find some of them and start getting closer to the reasons why do we get sick. It's very interesting! Keep up!
CommentHello, This is my first post. I have had vulvodynia for around 18 years. I have had it for many of my childhood years, and have felt like it has taken over many years of my life. I have been to see pretty much every doctor in the book and am fed up with the pain. the only relief i had finally was 5 months ago when I got proscribed on lyrica, it helped me alot. But i had to be taken of it because it made me gain 80 Ibs and was causing me health problems. so i am back to square one. And after almost 20 years of pain, i am at my last straw does any one have any suggestions? I have tried physical therapy, and pretty much anything else. the only thing that seemed to work was the lyrica.
CommentI have been reading the 10th guest book...There was a lady who said that she had a perineoplasty. I have had a perineoplasty also. The doctor pulled the skin over the cuts and stitched it toward the anus. Just like her, it stopped the pain during intercourse. But, I would agree that it has only helped 80-90% because I still have pain around my anus and my clitorus which is unbearable during my period. I have tried all kinds of creams, Zoloft, changing washing powder and toilet paper, wearing cotton underwear, etc. Right now, I am soaking in Epson every day around my period, and when I have unbearable itching, to keep from scratching myself open, I am using CampoPhanic (I think I spelled it wrong). I hope this helps anyone reading, and if anyone has any other suggestions, please let me know.
CommentHello, I have been using topamax for over 3 yrs and have been 90% symptom free. Yippee!! However, 3 days ago, after examing my vulva with what was just a pimple, my vulvodyania has returned. I am on a dosage of 250 mg daily and am thinking of calling my doctor for maybe an increase. Is it common to have a relapse? The only thing I can think of is that I ate a couple of strawberries the day before this started and I have avoided them all along. I also have the redness back as well. I did so well for so long.......I cannot believe this!!!!
CommentHi! I stumbled onto this website last night and have been pouring over it in all my free moments since then. At first I just sat and cried reading the stories because for the first time I knew I wasn't alone!! I'm 32 and for the last 10 years I haven't been able to have sex without intense pain. It literally broke up my first marriage. I'm remarried now, fortunately to a very patient man who supports me and is willing to help me in whatever way he can. Everything started when I went on the birth control pill. My doctor and I had to try several different ones before we found one that didn't give me major headaches or make me 'dry'. That took about a year and during that time my sex drive was dead - once I started the pill I'm on now, my drive came back, but it felt like I was being raped everytime I had sex. And it's just been a battle not only with the pain, but with |
