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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.
CommentI have never posted anything before and am doing so now out of desperation. First, my sincere apologies for the long posting, but I am at the end of my rope. I am feeling hopeless and like I am going to lose my mind. I am hoping there is someone out there that can relate to my situation...perhaps then I would feel like less of a freak. I've had Chronic Fatigue Syndrome, Fibro and IC for 7 years. For about 6 years I've also had irregular periods, cramping not just during my period and what feels like hormonal imbalances (althought according to blood tests are not). During this time, I also have experienced pain in the pelvic area which I now realize is most likely PFD from the muscles in that area getting tight and inflammed In the last few years, I've suffered from weird rashes on my body and eczema. Now I've found out that I have Lichen Sclerosis. Biopsies confirmed this. At this point I am a nervous wreck. I feel sick all the time from my various problems and the pain and itching in my genital area is driving my insane. I started looking around to see if anything looked weird and now I am getting paranoid about everything I see down there. I see the white areas of LS (using Temovate for it), but every little bump and coloring of the tissues look suspicious to me. I see little bumps if I pull the inner labia to the side...I guess they are glands...according to the doctor anyway. I see discolerations that I don't know if they are normal or not. I am worried about every little thing I see. I'm in pain constantly. I'm worried about that area looking weird, even though the doctor says nothing is wrong except the LS. Please help with any comments. Much appreciation. PS. Is it normal to have a little bit of white on both sides when you pull the clitoral hood back.
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 |
