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CommentHi everyone. I was wondering if anyone on this site had ever had an EMG done by a neurologist. I have an appointment to have one done, but I'm finding myself a little scared. Apparently what they do is stick a tiny needle into your skin that penetrates your muscle(s), you contract that muscle and they get a reading off of it and can figure out where exactly the nerve(s) or at least which ones are bothering you. I'm just worried that if they're purposely messing with those nerves that it might make my pain worse. It seems like when I agitate the nerves down there, they become even more sensitive and the pain cycle becomes even more apparent. I don't know, I want to be cautious about this. If anyone has done this or knows anything about it, feel free to contact me. Thank you.
CommentHas anyone had die-off that lasts more than a fortnight. Mine has gone on for nearly 4 weeks and I'm getting really discouraged. (was vulvar itching to begin with but is now deep inside). I've just halved my does of herbal medicine but still itchy.
CommentGood Service
CommentHI EVERYONE1 I HAVE BEEN READING THIS SITE FOR TWO DAYS NOW. I DO NOT KNOW IF I HAVE VULVODYNIA BUT MY SYMPTOMS ARE VERY SIMILAT TO ALL THE ONES I HAVE READ. MY SAGA STARTED BACK ON 8/21/05. I HAD A VERY NASTY URINE INFECTION, I MADE THE MISTAKE OF NOT SEEKING HELP SOON ENOUGH. WHEN I DID, I WAS MISERABLE AND A BATTERY OF ANTIBIOTICS WAS GIVEN TO ME. I HAVE EEN ALMOST 5 OCTOR SNOW. NO RELIEF. I AHEVTAKEN ANTIBIOTICS/ YREATS CREAMS/ DIFLUCAN, CLORICOMAZOLE CREAM, FLagyl, zovirax( the gyn md thought i had herpes, it was negativre0 HE GOT A BIOPSY OF A SMALL GROWTH IN MY VULVA, WAS NEGATIVE FOR CANCER ALSO. I STILL HAVE BURNING WHEN URINATING, IT HUTS AND BURNS WHEN HAVING SEX AND IT BURNS CONSTANTLY IN MY VULAR AREA CLOSE TO MY VAGINA ALSO. MY HUSBAND OF 23 YEARS HAVE BEEN WORNDERFUL. MY KINDS/FAMILY ARE VERY COM=NCERNED. NONE OF THE DOCTORS I KNOW, OR DOCTOR FRINDS BELEIVE I MIGHT HAVE VULVODYNIA. I AM STILL WAITING FOR SEVERAL LABS TEST THEY DID. I HAVE APEDING APPT WITH MY GYUN MD THIS NEXT FRIDAY. HE HA SNTO BEEN F ANY HELP EVEN THOUGH I MENTIONED TO HIM THE POSSIBILITY OF VV/OR ESTROGEN PROBLEMS. HE IS VERY STUBORN. I IWLL GET ANOTHER GYN MD. I AM VERY SAD AND DEPRESSED. I AM ON THE LASY CLASSES FOR MY MASTERSIN NURSING, I AM AN RN, AND I AM SO FRUSTARTED I MIGHT TAKE A BREAK UNTIL I FIGURE IT OUT WHAT IS WRONG WITH ME... MY SYMPTOMS ARE WEIRD BECASUE I ALSO FEEL THIS ' COLD HEATBURNI NG FEELING IN MY THIGHS, LEGS ARMS AND SOEMETIMES IN MY NECK???? I STHE SAME FEELING I FEEL IN M Y VULVA? THE PAIN IS INTERMITTENT. I AM SLEEPING WITH AMBIEN, I TRIED LORATAB BUT MAKES ME DIZZY/GROOGY BUT I CAN'T FALL ASLEEP. I HAVE NOT TIRED ANY OF THE NERVE RELIEF TABS BECAUSE NO ONE WANTS TO TRY IT WITH ME THEY KEEP SAYING I DON'T HAVE V V BUT MEANWHILEI AM MISERABLE!!!! I DON NOT WANT TO HAVE THIS BUT IF ANYTHING CAN HELP I WOULD LIKE TO TO TRY IT!!! IT IS VERY FRUSTRATING WHEN THE DOCTORS LOOK AT YOU LIKE YOU ARE CRAZY, AN DYOU KNOW YOUR PAIN IS REAL .I CRY EVERY NITE SPECIALLY IN THE SHOWER BECAUSE I DO NOT WANT MY POOR HUSBAND TO SEE ME SUFFER. WE USED TO HAVE A WONDERFUL SEX LIFE NOW IS ALMOST NONE EXISTING. I KNOW SEX IS NTO EVERYTHING BUT IT IS A VERY IMPORTANT PART OF LIFE AND MARRIAGE AND WHE TWO PEOPLE LOVE EACH OTHER SO MUCH IS VERY RELEVANT. I AM VERY DEPRESSED. I HAVE TO WORK FOR HW NEXT 10-15 YEARS I DO HOPE I CAN FIND A CURE OR RELIEF RO ALL THIS. IT IS RELLY HARD TO HAVE ASMILE IN YOUR FACW WEHN YOUR HEART IS SAD AND CRYING THANKS FOR YOUR LETTERS.
CommentHas anyone tried the new drug Lyrica? Also, I have been waging war against yeast infections. Is it possible that I could have yeast but it show up negative on a culture? My doctor says no but I have read that it is possible. I am thinking of going to a holistic doctor. Do any of those natural remedies for yeast really work?
CommentI have suffered from skin tears, burning, itching, sharp pains, and discharge (all of which are worse the week before my period and days after intercourse) for over 5 years. I have had two skin biopsies of the vulvar area that demonstrated "chronic inflammation" and deep tissue yeast. All of this started after a very long course of repeated antibiotics after dental work. During my pregnancy two years ago, the pain and itching was unbearable. I was prescribed multiple creams and ointments (I could run a pharmacy from my bathroom vanity) You name it, my OBGYN and dermatologist have tried it. I even tried antidepressants for a year once depression set in as well as the vulvar pain. My once enjoyable sex life with my husband is all but nonexistent. Some days I don't even want to go anywhere because it is harder to deal with the pain in publivc situations. Fortunately, I guess, I am a nurse and I stand for 40 hours a week. Distractions at work are my best remedy until I finally have to urinate and sit down for lunch and the pain resurfaces. I have been up for three hours reading postings from this site. I know your pain. I wish that I actually knew someone who was experiencing this horrible condition that is so hard to just talk about with friends and family. You just don't go around talking about vulvar itching and tears like you do headaches or diabetes. Thanks for reading.
CommentTo Gail: Has your gyn suggested a Colposcopy prior to the biopsy. The colposcopy procedure is very different and can detect abnormal cells. Best of luck.
CommentYes you can have yeast without it showing up on a vaginal culture, do go see a holistic practitioner and they will start you out right. Each person is different and one natural supplement may work for one and not for you. They work with you and will help so much more than a regular MD who doesnt even believe you can have a yeast problem if your culture is negative. Luckily for me, my gyn. admitted to me you CAN have a problem with a neg. culture. You can be passing it back and forth between you and your partner too. And thats fact despite what most doctors say. There have been articles in Cosmo and other popular mags regarding this fact. Some docs just don't want to hop on board yet and admit what they have been teaching us has been incorrect. So, have your partner treated as well. I have met so many women who have had partners with athletes foot, nail fungus, jock itch...And they ask if yeast can be passed. My poor mother gets a yeast infection every single time my step dad is on antibiotics.(she will no longer have intercourse with him while hes on antibiotics) So noone can tell me semen doesnt pass things to our vaginas!!! Theres proof right there!
CommentTo Candi: I totally agree with your post and men need to read this too. I remember when I first started having sex with my wife more than twenty three years ago and she started to have yeast infections. I was too ignorant to understand the back and forth connection and many of us guys can't believe we can contribute to our mate's illness. So guys take the time to wash your hands, clean under your nails, brush and floss your teeth and if it is suggested that you are treated along with your mate to kill off a stubborn bacteria or fungus step up and don't take offense. Be part of the solution, you are in this together. Candi, I have posted in the past after reading an article on a Woman's Health site that semen can upset the ph balance of the vagina leading to a yeast infection. Wish I knew then what I know now.
CommentTo Frank: Yes, my gyn has said she would do a colposcopy along with the biopsy. I thought they were the same thing. Would the colposcopoy be able to tell her if the biopsy is needed?
CommentTo Gail: Just in case you did not get my e-mail response, I believe the answer is yes. My wife had the colposcopy procedure a few years ago and I believe the doctor did a biopsy at that time. There are some very good descriptions of the procedure available through an online search. Best of luck.
CommentI HAVE SOME VERY IMPORTANT INFORMATION. I have been reading this guest book for 7 months now and I know you are all in terrible pain. I suffered from vulvodynia for 6 months before I found out I have a genetic disorder called fibromyalgia. I went to various doctors and had much of the same worthless tests you have all had, with all results coming back negative. Fibromyalgia is a very common disease and often has only a few symptoms in the beginning. Unfortunately, it worsens and one develops a myriad of symptoms that are often bewildering to doctors prompting unnecessary and often harmful drugs, testing, and medical procedures. I strongly encourage anyone with vulvodynia, bladder problems, or any other unexplainable symptoms to visit www.fibromyalgiatreatment.com. Read every page of the website. This disease is successfully treated with a drug called guaifenesin, which I am currently taking with fantastic results. Fibromyalgia is a misunderstood disease which many women needlessly suffer from simply because most doctors are still ignorant about its symptoms and treatment. I was beginning to give up hope until I stumbled upon this information online and was then coincidentaly diagnosed and treated by my brother, an M.D., who has helped 100's of patients with equal success. Now it's my job to alert all of you. Keep in mind one does not necessarily need to have ALL of the symptoms of fibromyalgia to have the disease. For further research read the book "What Your Doctor May Not Tell You About Fibromyalgia" by R. Paul St. Amand. This is the only pertinent information that is currently available. Be wary of any books or doctors who say there is no treatment. Best of luck on your journey to health.
CommentI have Fibromyalgia as well and was a member of the support group at fibromyalgiatreatment.com and was on guai. The only problem is not having a mapper.If you don't find YOUR correct dose, the guai wont work. They say you can show a video to a massage therapist etc. but, its more difficult than that. I couldnt find a mapper and I am an avid user of herbs and you have to change your entire life to go on guai.I did and its very difficult. you have to change everything from your cosmetics to your soaps, lotions, walking on fresh cut grass and on and on. I wear jeans now every single day. I find that foods cause me more pain. Fibro and VV wise. If I eat alot of sugar or carbs my entire body burns. I've got all of the signs of fibro, the huge lumpy bump in my left thigh and all. Guai DOES work, if you are willing to change your entire life. It also can take years to work and then may NOT work for you. Just like everything else, it all depends on the individual. For an alternative to guai you can go to customhps.com
CommentIn response to the above entry about guaifenesin and fibromyalgia: it does work, and it works well. I, and thousands of others are living proof. It is a simple treatment that will change your life from being in complete pain to being normal, but you must follow certain rules to make sure the drug is effective. Changing one's shampoo and soap (some block the effectiveness of the drug) to a different brand is a very small price to pay for good health. Doctor's that do fibromyalgia mapping in your area can be found on the website www.fibromyalgiatreatment.com under "Doctors and Practioners." Yes, it's important to find the correct dosage, but this is not difficult with the proper help. Dismissing guaifenesin as an effective treatment for fibromyalgia (which vulvodynia, ibs, cystitis, etc are common symptoms) is a bit like dismissing insulin for diabetes. This is the ONLY effective treatment for this disorder. A strict diet is involved only if one is also hypoglycemic, otherwise any foods can be eaten. This is a simple protocal that does not make one change one's life drastically, except for being healthy and painfree once again. Please, I urge any sufferers reading this guestbook to at least read the website (particulary the page "Guaifenesin Protocal") to see if it may pertain to you. Fibromyalgia is a very serious disease, and many women don't know they have it. But it is fully treatable if you just follow a few simple rules. If you've tried it and it didn't work for you, perhaps you were unknowingly using a product that was blocking the guaifenesin. Giving it up would be like giving up insulin. You'll be right back in that cycle of pain.
CommentGuai does not work for everyone with FMS. And that is fact. I was a member of the support group and members also talk privately. One of the more promenant members actually became immune to guai, she is also a patient of Dr. St A's There also is not a practitioner or mapper in everyones area which makes it more difficult than I guess you know to find your correct dose. If you dont find your correct dose it wont work, if you accidently block on a salicylate, you will definately know it from the pain you will feel. Guai does work, but not for everyone. You only read testimonials from those it did work for. What about all of the ones it didnt work for or the ones who found it impossible to find their personal dose because there was noone to help feel your lumpy, bumpy left thigh?
CommentLadies it seems that these peopel who are posting off topic with all sorts of nonsense have no regard for the seriousness of this site. Please ignore them and go on with the important work that needs to be done, tell your stories and help others.Frank B.
CommentPerfect example, post on topic and ingore the stupid distractions.
CommentWhat happened to this chat group? How come no one is posting. I miss reading the chat.
CommentHi! I am 38 yrs olg & about 6 months pregnant with my first baby and would love to hear from others who have had babies.I came off Effexor before getting pregnant and I have definitely seen my vulvodynia get worse. I also have these stabbing pains coming from just above the clitoris - under the pubic hair/over bone when I move, sit or put pressure on in just the right way. Anyone else experiencing this (pregnant or not)? That is a new symptom for me w/ my 10-12 year stint with vulvodynia. Thanks! - Lisa Comment
CommentLadies, please do not allow these morons to annoy you and disrupt our site. Just post your on topic message and ignore these uncaring idiots.
CommentIt's been over a month now that my pain level has been below a one on a scale of one-to-ten, and I think I am finally getting over this. Having read entries in the guestbook on several occasions, which made me increasingly despondent, I wanted to post this right away to share my situation, and some hope. My symptoms started in the typical fashion -- I'm 36 years old, a part-time lawyer and a mom. I used to work out for an hour a day, five days a week (mostly spinning -- which makes me wonder if there's a correlation). I pride myself on having a high pain tolerance. My husband and I had just bought a second home in a resort area and things were going great -- I had just spent the day at the beach. That night, I thought I had the beginnings of a yeast infection, although it seemed like a strange infection -- not a lot of itching, just burning and chafing, occasional stabbing pains, and no discharge. I took Monistat 3 and had no response. I then took Monistat 1 to "jump start" things. Then I took Monistat 7. It didn't work, and in fact got worse. The burning was so intense that it was keeping me up at night. It felt almost as though my body was having a severe allergic reaction to itself -- like I'd broken out with hives inside my vagina. Soon, I could no longer wear anything but skirts. I was falling asleep at 7 p.m., only to wake up a one or two and stay awake for a few hours, in terrible pain. I went to my OB-GYN of 5 years. She poked around and did every test under the sun on me, including herpes, which was very embarrassing. She gave me topical yeast infection medicine, which made things even worse. Ultimately, she said, "I don't what's wrong with you. The tests are all negative. Maybe it's low-grade yeast, but I don't see any. Maybe it's just in your head. If you ignore it, it might go away." Almost in tears, I responded, how could I ignore it when it was burning so badly that I couldn't sleep at night? She curtly advised me to get another opinion, which I did. Fortunately, the second doctor I went to see diagnosed me immediately with vulvodynia. At this point, I'd had the symptoms for a month. I'd started keeping a "pain diary" to see if I could find out what made things better, and my pain was anywhere from a 6 (at best) to a 9 at any given time during any given day -- usually a 7 or 8. The doctor advised me to leave the vaginal area alone as much as possible. No swimming, and no sex until the condition was gone. He gave me a topical anti-inflammatory cream to try. He also gave me a prescription for a pain-killer to take at night if I couldn't sleep. He advised that if things didn't improve after three weeks, we'd try anti-depressant/anti-anxiety drugs. I was hesitant about the anti-depressants, but he explained that, rather than being treated for a mental disorder (which I was quickly heading towards with all that pain and lack of sleep!) a side-effect of the drug was to help your body increase its seratonin levels, which helps it respond better to pain. He explained that the theory is that vulvodynia is where your nerves, for some unknown reason, or a variety of reasons, go into a spasm and continue to send pain signals, even though the cause of the pain is no longer there. The nerves also become hyper-sensitive to stimuli. In any event, I tried the topical anti-inflammatory cream for a month and it only seemed to make things worse. After three weeks, the doctor put me on 50 mg daily of Zoloft. I was not happy about this. I'd read in the Vulvodynia Survivor's Guide (which, of course, in pain and desperation, I'd bought) that it is the tri-cyclic anti-depressants that work on pain, and that Zoloft and other SSRI (?) inhibitors did not have the same pain-inhibiting effect. I basically felt as though, but writing this prescription, my new doctor/angel of mercy was once again telling me, "It's all in your head." I explained this to my doctor. He said, "I KNOW it's not a tri-cyclic, but trust me. I've had success with this. Just try it." After urging from my husband, I agreed. Two days after I started taking the Zoloft, I woke up one morning and realized that my pelvic muscles felt very relaxed. I hadn't even realized they had been clenched up, until they suddenly "unclenched." It's as though, if you made a tight, tight fist and kept it that way for hours. The pain would be intense. And then when it suddenly releases, the pain is still there, but so much less intense! I called a female doctor friend of mine to ask, "Does this make sense? Could my muscles have "unclenched?" Is it possible the Zoloft could have worked so quickly? Is it a placebo effect -- even though I didn't think it would work?" She laughed and told me, "Medicine is a science, but it's also an art. You're at the point where we've now left off science and entered the realm of art We don't know why these drugs work the way they do, but it is entirely possible that it would work for you that quickly. Just trust your doctor and stay with the program." It wasn't easy. It seemed like for every good day I had two bad days. In my painful and frustrated state, I questioned whether my doctor knew what he was doing, or whether he just threw Zoloft at all his patients to get rid of them. I hated taking the pain killers (at first, maybe 3 or 4 nights a week, then twice, then once, and for about five weeks now, not at all) and was worried about becoming addicted. I hated taking the Zoloft, having always thought that it was a slippery-slope kind of drug. I felt like I had some horrible, rare infection that would never go away unless I found the right medicine (not anti-depressant!) for it. But, I stayed with the program. And very slowly but surely, things were getting better. And soon I was having more good days then bad days. Then mostly good days, and now, eight weeks later, pretty much all good days. The vulvodynia isn't gone. Sometimes, it feels like (for example) if your foot was about to fall asleep -- that numb, pins-and-needles feeling. Sometimes it feels like the skin is rubbing together and causing chafing. But it's low-grade, and so much better than that incessant burning. My doctor promises me that in another month or so, the symptoms will more than likely be gone. He has his patients stay on the Zoloft six months and then wean off. If symptoms recur, he tries a year, and then weans them off. He has one or two patients who have simply stayed on the Zoloft. Why is it working? I still don't know. I DEFINITELY have noted a correlation between stress and the pain level. There are times when I'm under stress where I can physically feel it start to flare down there. But at least now, the pain threshhold never rises above a one or so (irritating, not really painful). I used to think people who complained of stress-related problems were just "malingerers". Now I've come to the realization -- even if it is all in your head -- if you're in chronic 24-hour pain and you can't stop it, it's very real to you!! It's terrible!! I recognize now that I was going through a tremendous amount of stress without realizing it. When people say to me, "you must be under a lot of stress" I always think to myself, "But I was under much worse stress than this in law school." But I forget, back then I didn't have kids, a mortgage, the stress of buying a second home (and it was stressful, in retrospect), plus we moved to a new primary home, my kids started school -- just getting them there on time is stressful!! -- all in a four month period. I'm a Type-A personality and like to keep busy, so for me this didn't seem like a big deal. But I guess my body was telling me otherwise. Anyway, that's my story. I promise to post again when (hopefully not "if") I become symptom-free. And if I relapse, I'll mention that too. But I would certainly think I can't hurt to ask your doctor about the Zoloft or some other SSRI inhibitor. Good luck!
Commentthis is my first time posting here after reading some of what you guys have posted. i am 20 yrs old and have had pain in my vagina since i was 18, i tried to have sex and it hurt so bad i was in tears and then it hurt to go to the bathroom. i went to my doctor and she diagnosed me with a bladder infection. after being on antibiotics the pain didn't go away. i went to another doctor who also diagnosed me with a bladder infection, i was on different antibiotics and the pain still didn't go away. i then went to a urologist and was on different antibiotics and then on meds for IC for a while with no change. it got to the point where i could barely sit down. so i went to another urologist who checked for IC and said my urethra was inflammed. at this point i had been to the obgyn a couple of times, i had a yeast infection and bacterial vaginosis. in oct. of 04 i went to an obgyn and got tested for STD's which i didn't have. i went to have an ultrasound and i had a pea sized cyst on one of my ovaries. a couple of weeks after this i started getting really sick to my stomach and couldn't eat anything. i ended up in the hospital twice, i had a camera put down my throat and into my stomach and they found nothing. i also had a CAT scan where the only thing they found was 3 cysts on my left ovary and 2 cysts on my right ovary. i went to a stomach specialist and he diagnosed me with IBS and i also found out i was lactose intolerant. for the IBS i have been taking 10 mg of amitryptaline for the past 9 months which has also been helping my vaginal pain because i didn't take it for a couple of days and i couldn't sit down. i thought i was all out of options so i went to a naturopathic physician who thought i had IC but i don't. she told me to call Margaret Elkins, she told me about vulvodynia and it sounded exactly like what i had. i have been taking grapefruit seed extract and calcium magnesium citrate for 4 months now and it has seemed to help a little. and that's where i'm at right now 25 months and 5 stupid doctors later Shellee
CommentI CAME TO YOUR COOL SITE WHICH HELPED ME ALOT.KEEP THE GOOD WORK
CommentHello everyone... Thank you for all the shared information. I have had vulvodynia for 5 years. I am Danish and 26 years old, I am very lucky to be married to a wonderful Texan. In Denmark the medical system is very different from the States. My option is now to join a Botox experiment and get botox injections in my pain areas. Therefor my question to you all is: Have anyone tried it???? And what where the results??? Thank you so much and stay positive. Lulle
CommentHi girls. This is my first post. I was diagnosed with vulvodynia yesterday after suffering (and taking LOTS of anti-fungals and antibiotics for supposed yeast & BV) for 6 weeks. I know that's not long at all compared to some of you. I'm 24 and feel like my life has been put on hold. Luckily I have the most wonderful, understanding, supportive boyfriend who has been my rock through this. Anyway, I'm starting on Elavil and have heard both positive and negative about it on this list. Just wondering, is the weight gain from the drug itself or from increased appetite? Might be a stupid question... but I'm worried about that. I'm normally very active and of course haven't been able to exercise since this all started. Please feel free to email me. I'm so new to this and having a tough time holding it together and thinking postitively. Thanks!
CommentTo Lulle: I have been reading and posting in these Guestbooks for year and I can't recall anyone trying Botox but you may get a response from someone new. I would be very cautious using this treatment for several reasons, as you know the Botox relaxes the muscles in the area in which it is injected. Depending on where your doctor injects you may have a problem with bladder or bowel incontinence. Hopefully if all goes well there is the issue of repeating the procedure every several months. I know people who suffer from spasms of the eye, and throat muscles affecting the vocal cords can get wonderful results from Botox. Best of luck and please let us know how you are doing.
CommentHi all, I have just come across this website and thought I would share some of my own findings and experiences. Firstly, I was "officially diagnosed" yesterday as having Vulvar Vestibulitis (and already have a manageable level of endometriosis). I understand the pain and frustration and feel some relief now that I have found a specialist who has been able to pinpoit the specifics of this issue. It's very difficult to cover an issue in one post, but wanted to share my brief history and some options to consider. Firstly, I believe in a holistic approach to all healing - this is mind (emotions), body (supporting and nourishing yourself) and spirit. Deep-seated emotional issues have held me back from fully experiencing true healing - I urge people to look at this aspect of self too. After all, if the cells in the body have the ability to 'unheal' then surely those same cells can also 'heal' themselves too. Something to consider... I Recommend: Caroline Myss's book "Anatomy of the Spirit" and also the teachings of Louise L Hay "Heal Your Life". Diet-wise: I have previously tried the Candidiasis 'diet' and basically through eliminating all forms of sugar (including malted foods, corn syrup, artificial sweetener, honey etc) and fermented foods (including MSG - which is a yeast derivative - soy sauce, miso, vinegar etc) and being aware to keep the levels of acids low in the body (avoiding excessive coffee use and acidic fruits), this assisted greatly in chronic and sytemic thrush / candidiasis. It's not easy - but it is possible! I guess the real question is, how serious are you about really wanting to heal your body? I believe in eliminating the 'bad' bacteria and using 'good' bacteria to strengthen your immune system. By using a good pro-biotic (acidophilus) tablet with an 'enteric coating' (always refrigerated) it helps put the good bacteria back in the bowel. I have personally had some success with Magnesium as this works on the nervous system and helps the muscles and nerves to relax - if you are a jumpy person, or get a twicthy eye, chances are that you are low in magnesium. Please be aware that I am not a professional in any way shape or form, and I am finding my own journey as difficult and challenging as the next person, these ar just my own thoughts and experiences. After being diagnosed properly I have had to have a big 'reality check' about what I am prepared to do in order to effect complete healing in my body. There is nothing I want more than to have a normal, healthy sexual relationship again - at this stage, this is not an option as the pain is quite severe - and VV can be daunting and upsetting. So I ask myself, 'what is causing this dis-ease in my body, and what steps can I take to really heal and support my body?'. I am going to eliminate all sugar and acids (especially alcohol and limit coffee) and take herbs specifically tailored to me, receive healings, as well as meditation / reflection in order to get to the root of the issue. I believe that all the answers are within each and every one of us, we just need to listen for them. You might say 'this is all good and well, but how is this going to help the pain?' or 'but I don't know the answers!' Well, right now it may not, and you may not... it's a long-term project, there is no 'quick fix' as most of you have discovered. Part of me is fearful that I may not be able to overcome this through these efforts alone, but at the same time, I am still making progress with the changes I have made already. I am open to considering surgery as a last resort, but don't feel it will come to that. Good luck. I will post if I have any major breakthroughs that may assist other people. I hope that some of this may be useful to someone out there.
CommentThanks to the www.vulvodynia.com members continued patience while we try to limit the recent flood of spam. I apologise for any inconvenience this has caused. Howard Glazer Ph.D.
Comment2 questions... for those of you on Elavil, how long did it take you to see results? Also, do you all notice a big diffIerence in pain the week before & the week during your period? Thanks.
CommentKimbery, which anti-depressants did you try?
CommentHi, this is my first post, so first I want to thank you all just for being here over the last few years, it really helped me feel like I was less alone throughout this illness. I’m writing now to ask about people’s experience with prozac (fluoxitine) as a pelvic relaxant. I have had classic dysthetic vulvodynia since I was 40 (am now 45), with all the burning and aches that go with it, particularly when sitting down for long periods, not to mention painful sex,. After trying nerve blocks (pure anaesthesia – no steroids), tricyclics, and various other weird and wonderful things, I had finally given up trying when I went to an endocrinologist (to lose weight!) who took far more interest in this problem than the 50 or so gynaecologists I had seen (this doctor is into the holistic approach, so he wanted to know everything about me) . I told him about the vulvodynia, and about the fact that it seems to abate when I have a glass of wine (but obviously I can’t be having glasses of wine at all hours)! He told me that that made sense because it could be the vasodilatory effect of the wine, or simply the overall relaxing effect, which would of course extend to the pelvic area. To cut a long story short, when I told him that prozac was one of the few recommended therapies that I hadn’t tried, he put me on 10mg a day just to see what happened. 14 days later, for the first time in years my pain stopped, completely, and I was in heaven for four months. Now, I’m still taking the capsules but it’s like they have just stopped working. Given that one of the known side effects of prozac is loss of libido, I presume this is because it somehow desensitizes the pelvic region. The manufacturers insist that this goes away after you have been taking the drug for a while, and I suppose that this is what has happened to me – i.e. it has been a side-effect that wears off after long-term use (personally, the fact that I was pain free more than counteracted any reduction in libido – I hadn’t had so much sex in years, great for me and my lovely, understanding partner!). Upping the dose does not seem to have made any difference. So what I would really like to know is if anyone else has had a similar experience, and if they have tried stopping and starting the prozac, say, three months on, 6 weeks off, or something like that, which is what I am thinking of doing… My fantastic endocrinologist says he can also put me in contact with a highly skilled acupuncturist, just to see what he says about acupuncture being able to relax the pelvic area. I see some people on here have had success with that, but it seems a bit hit and miss. Any other ideas on what could serve as a pelvic relaxants? I do not recommend overdoing the wine – your liver is a pretty important organ too and alcoholism is no joke- but I would be interested if anyone else has experienced the “wine effect” (Rioja wine in my case – I live in Spain…). Well, thanks again for just being here. Wishing everyone relief from VV, Julia
CommentHi, Does anyone know of a vulvar specialist close to the St. Louis, MO area??? I have suffered with vulvar vestibulitis for at least ten years and am so tired of ob-gyn's who don't know anything about it and don't really care. ALSO, is there anyone out there who has tried "natural" progesterone cream as a treatment for vestibulitis? I have noticed that my pain with sex is much less around ovulation--doesn't this sound hormonal? Please respond! Thank you!!
CommentAfter one year of dealing with this, they think they found the answer. I am allergic to thimerosal. They did the true patch allergy testing where they put patches on your backs. I developed a welt for thimerosal. It is in a common hemmroid treatment. I used it, got red. Kept using it thinking it would help. Once the hemmroids were gone, I stayed red because I was still exposing myself through laundry detergent and cleaning agents. Every cleaning agent I used has it in it. I am thimerosal free for 4 days and already feel better. So if you have not done allergy testing, it is worth a try. I did it thinking, they won't find anything. But they did. I even had a skin biopsy, they had me use neosporan. It contains thimerosal too. So it just irrated me more. Good luck! I hope this helps at least one person.
CommentHow do you know if the products you are using contain thimerosal? If that specific word is not on there, how do you know if they are Thimerosal free?
CommentTo Lulle: Re Botox. I haven't tried Botox but have heard that some women in Australia have however the nurse I spoke to didn't know much of the reason for use or results. I am currently pregnant and symptom free for the first time in 13 years, and have tried many different treatments. Botox is one on my list if the pain comes back after birth. To Lisa: I am due in 10 weeks now. My husband and I tried for years to fall as sex was so difficult. We ended up going through IVF treatment and fell on our 8th try. Before getting pregnant I was on HRT to regulate my cycle for IVF treatment, the HRT significantly reduce the number of days I had pain and the intensity, leading me to believe hormones affect my symptoms greatly. However, the first 10 weeks of my pregnancy was hell. The pain was back on a daily basis and very intense, work was difficult with the pain on top of morning sickness and tiredness. After the firsrt 10 the pain disappeared instantly. Returned for a few weeks around 21 weeks but has completely gone again now. I am quite concerned about giving birth but my GP has been aware of my problem for all of the various treatments I've had. I live in a small rural town so we are not seeing an OBGYN. Out local hospital is very small but I'm hoping that the mid wives will be understanding of my reasons to be concerned about pain during the 2nd stage of labour. My GP will be there and is doing a pretty good job of making me feel more confident. Our antinatal classes and developing a good understanding of giving birth is also helping me to get prepared. I am really concerned about tearing or having an epesiotomy and struggling to recover afterwards due to the poor condition of the skin and nerves around the vuvlar. I have been drinking some herbal teas and we are looking into perineal exercises including a device called an Epi No which was advertised in a magazine as helping to stretch the perineum to avoid tearing during labour. Lisa, please let me know how you are going with dealing with pregnancy.
CommentTo Frank and Fleur. Thank you for answering. I have decided to go along with the Botox experiment, it is a very little amount that they inject and they only do it in the area where my specific pain lies. So it is a very individuel treatment. Apparently they did a pilot project in Sweden and got fantastic results, several of the injected women became painfree. I, however, am just hoping to reduce my pain..... I will not dare to hope for painfree!!! I will get the injections next Thursday and get back to you if there are any changes.... it is Placebo though, so I am not certain to get the treatment. Thank you all for sharing and stay hopeful. Lulle
CommentHi there ladies... I'm sorry I do not have time for a proper update as I am at work.. but I want to invite anyone in the Wayne, New Jersey area to a National Vulvodynia Association support group meeting on October 20. If there seems to be enough interest, there could be a guest speaker from Beyond Basics Physical Therapy (which is where I go for my PT). Dr. Goldstein frequently refers patients to this therapy group and I truly feel they made a difference in my recovery. ---- The NVA support group meetings are a great opportunity to speak face to face with people in our situation. We swap information, success stories and give eachother encouragement and support. Anyone interested please email me as soon as you feel you might like to attend. I can provide you with directions. Please put "Support Group" in the subject line. Take care all!
Comment** I apologize after reading over that post it seems like I'm representing myself as "recovered" which I am not. I am on the road to recovery, and I feel that P/T is playing the largest role in that.
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CommentDoes anyone get worsening of symptoms when taking supplements?
Commenthello. i've been lurking on here on and off for awhile here, so i thought i'd share a bit of my story in hopes that some of it might be helpful to someone. it all started about 15 months ago. i had a sudden onset of secondary vestibulitis after trying the nuvaring. every health professional i've talked to has assured me that my response was not common and was a bit mysterious. i don't doubt that, but the fact of this curse does remain. after putting off care for several months (and settling into my job/getting insurance), i finally began my journey through the health care maze of getting this problem named and treated. my pain is only during intercourse or any other moderate to heavy pressure on the lower part of the vestibule. through the year i have tried: physical therapy (somewhat successful, but my condition seems to have more to do with the skin or nerves than the muscles), estrace (no really noticable effect), a vestibulectomy (by dr. goetsch at ohsu- i highly recommend her, but the surgery was only a partial success for me so far -- i'm 3 months post-op), naturopathic treatment (my naturopathic dr. feels that ibs and vestibulitis are sometimes connected - do many of you suffer from ibs? she worked wonders on my ibs symptoms, but we're still working on my v.v.) and, most recently acupuncture (just started). one thing i wanted to share with women who have similar symptoms to my own is a bit of an accidental breakthrough i had recently on the intercourse front. the other night we were (rather uncomfortably) attempting relations. i was on top and sort of gingerly moving and trying to get it all over with, when i thought "what the heck, i may as well try to get something out of this for myself". i grabbed a little remote control egg vibrator that was lying nearby and put it between us in the region of my clitoris. lo and behold it seemed to function somehow like a sensory overload or something! i really couldn't feel any pain to speak of and actually enjoyed myself a little bit. i've successfully repeated the experiment a few times and have since picked up a toy that is a little more comfortable for the purpose and not quite as intrusive. i'd be very interested to hear if this is helpful for anyone else. i sure hope so. thanks so much to everyone for sharing their experiences. there is so little real information out there about what works.
CommentTo Kim: Unless you are using these different "Toys" to stimulate your clitoris, you might try using a "Tens unit". This is a small handheld device used to block nerve pain, it is similar to the large machines used by rehab specialists. You place the two small gel pads near the area you want to treat in this case the vulva and adjust the current pulse. I've used this machine for neck and back pain and it works pretty well, although I don't know if it would be appropriate near the female genitalia. My wife has a problem with thinning skin and recurrent tear in the same six o'clock position, so this would be of no help to her. I am still frustrated and angry that we cannot get an answer as to why the skin is so fragile in that one spot. You all deserve answers, why the pain? Why are the nerves inflammed? Sure you can medicate to reduce pain, operate in hope of removing the affected area but that does not get to the reason behind the pain. I hope you continue to get relief from this thing you tried and maybe the Tens unit will also be of some help. I would be cautious that over stimulation of the nerves might actually lead to more problems and inflammation. Can you tell if you are pain free for longer periods after you do what you wrote about or is it just during sex? In either case I think you have brought up a unique idea, best of luck.
CommentAbout four days after I turned in my last entry (9-27) after three weeks of level 1 pain, I suddenly had a "flare" of sorts, from 1 up to 3-4. Very upsetting when I thought I was making good progress. I checked my pain diary and realized that I was ovulating (lots of discharge too). In looking back over the last three months of entries, I realized I've usually been ovulating through the worst of my symptoms. Interestingly, I went off the pill in February for the first time in fifteen years, and my vulvodynia started in May. I'm wondering -- could my body be allergic to my own ovulation secretions? I'm going to run this one by my doctor. Also, I learned that my father has suffered off an on for over a decade from something called Peyronie's syndrome, which has caused burning in his legs and penis. Usually flares up in times of stress, and disappears for no reason about 6-8 months later. I wonder if the two conditions are related?
CommentHi all. I am 21 years old and have been suffering from Dysesthetic Vulvodynia since I was about 14 years old. My pain started after a chronic fungal infection which i had for a long time, but didn't know what it was. Now my Vulva is exceptionally hypersensitive and very sore down the right-hand side and around and inside my opening. Most days it hurts every time I move and I am only relieved from the pain while I am lying down or not moving. I have been cultured many times for thrush, with only one test coming back positive, yet I always have a thick white discharge! Does anyone esle have this? And know what it is caused by?I have tried numerous anti depressants to numb the pain. Some worked for a short time, but after a few days the pain returned to normal. I have very pale, sensitive skin and i also have IBS. I am at my witts end, and I feel like i am so different from everybody else, as no woman i know has ever experienced anything like this! I just want to be able to have a boyfriend like everyone else! I have also been suicidal on numerous occasions because I just don't see a way out! I am really worried that this will never go away, as i have had it for so long, and from such a young age. I don't remember what it is like to not have this pain! Is anyone else like me? Has anyone recovered after having it for a long time like me? Any reassurance would be great. Thanks ladies....
CommentTo Gem: I am so sorry you have endured this pain for so long at such a young age. If you have been reading some of the past guestbooks you know my story. I can't relate to your specific pain and I hope you get some more appropriate responses but I am fifty two years old and have had seventeen abdominal surgeries beginning at age five. I have lived with stomach pain in the form of pressure and burning along with cramps and spasms for many years, I know chronic pain. I hope you will see beyond the pain and hold on one day at a time for the chance to one day live pain free. My abdominal pain and I.B.S. are the result of adhesions from surgeries, however there are many tests and treatments available these days. Have you see different doctors for the I.B.S.? Please pursue this course to relieve some of the pain in your life. Best of luck and a big hug and prayers to you.
CommentThis is my first post. I would like to share my story, though it will be kind of long. I am 24 years old and was diagnosed with Vulvodynia (and Vestibulitis) over 2 years ago. I have some level of pain at all times. The whole area feels very irritated and raw, even on the outside parts where the hair is (known as the Mons). The pain is sharp and throbs/stabs at times. It gets even worse when I stand/walk or sit for long periods. Lisa, I too have that sharp stabbing pain over the pubic bone. Mine is right in the middle where the pubic symphisis is. I didn't have that originally either-it started a few months back. I feel like everything is just clamping down so much against the pain that it is pulling down on nerves there or something. I try to be aware of it and relax the muscles, but they get tight and I don't even realize it. I just feel that sharp pain. Gem, I also have fair, sensitive skin. I have primary VVD. Prior to developing VVD, my first gynecology visit was painful, and tampons have always been uncomfortable to put in, so I don't use them. That is apparently common for people with primary VVD. My situation began when I was taking classes in college during the summer. I was walking around campus everyday and it was very hot. I developed an irritation so I went to the gynecologist who thought I had developed a dermatitis due to the heat and my sensitive skin. However, when it didn't go away I went back again and had to be seen by a nurse practitioner instead, who decided I must have yeast because she couldn't find anything else. We tried three different otc anti-yeast creams and vaginal boric acid among other things, but the irritation got worse. I never even had discharge or anything-irritation only, but they are so used to treating yeast infections, I guess they just assume that's what it is if it's nothing else obvious. I have been researching VVD for a long time now. That's what helps me feel positive about finding a treatment in the future. It helps me feel more in control. If I knew then what I know now, I would never have used those creams. Anyway, I went back to the original gynecologist who immediately diagnosed me with VVD. Over the past two years, and with breaks in between, the oral meds. I've tried include Elavil, Desipramine, Pamelor, and Neurontin. I have never tolerated medications very well, though, and I was on each of these 1-3 months before deciding that since I had not experienced any pain relief from them and the side effects were bothering me too much (exhaustion-could barely function, nausea, etc.) I had to stop them and search for something else. That doesn't mean they wouldn't work for someone else-people do find relief with them. We're each so different. I have also tried acupuncture, PT for the pelvic/hip/low back area, PT for the vaginal muscles, estrogen cream, and I am currently trying a pea size of 2% Lidocaine on the areas that hurt every night. My doctor prescribed it-you don't want to use too much. The idea is to give the nerve endings time to experience no pain. That might give them time to heal. I've been doing it for two weeks now, and haven't noticed too much of a difference, but I'm supposed to do it for 7 weeks. We'll see, I don't really feel like it would be a "cure", just wanted to see if it would help at all. I'm going to try Effexor or Cymbalta after that (maybe I can find one I'll be able to tolerate), and continue with my pelvic floor muscle exercises. From the medical articles I've read there are a few schools of thought on cause that seem to match my situation. The best match for me is the idea that some of us may be genetically predisposed to a condition where we are unable to turn off the inflammatory nerve process once it starts. We have a precipitating event such as a mild dermatitis in my case and/or the use of harsh topical treatment creams. This irritates the nerve endings in the vulva and causes them to fire off pain signals in the brain. A couple of research articles I read talk about how scientists have shown that women with VVD actually have more nerve endings in the vulva than women without VVD, and they are the type that register pain. Then there is a sort of pain "loop" where you are in pain so the surrounding muscles clamp down and cut down on the blood supply of nutrients to that area. This makes it difficult for the irritated tissue to heal. I just thought that research was pretty relevant to my situation, and maybe to someone else's out there. There aren't any real VVD specialists where I live, but I have a great gynecologist who is willing to work with me and try different things, which I think is important if you can't find a specialist. If you and your doctor need a jumping off point, one suggestion is to read "The Vulvodynia Guideline". It is a published medical research article I came across online. I don't have the web address in front of me, but you can probably find it if you type it into a search engine. I may have found it when I was on the National Vulvodynia Association web site, but I am not sure. It was a collaborative effort by VVD specialists to discuss and list the various treatment options used for VVD treatment including recommended initial doses, potential side effects, etc. Maybe it will help. Thanks for reading this long history. I have been reading the guestbook for a while now, and wanted to share. Good luck to everyone, and hang in there. It's just a long process of trying different treatments until you find one that works. I'm still trying, but I am hopeful. Take care.
CommentAll that typing, and I forgot something . . . I wanted to mention that I also developed urinary symptoms pretty soon into the whole VVD thing. Apparently, it's pretty common to have Interstitial Cystitis-like symptoms with VVD. Frequency is the problem. On my very worst nights, I've had to get up eight times to urinate. Sometimes it feels like my bladder is irritated just like my vulva. I'm not having bladder infections or anything. I've read that VVD and IC may be related because the bladder and vulva are formed from the same embryonic tissue, and I guess are susceptible to this same irritating/painful process in the same way. I'm sharing all of the specifics because I wonder how many others have these same symptoms. Thanks again for reading. Take care of yourselves, and keep up hope.
CommentThanks for the helpful tips and encouragement! I was diagnosed with IC and vulvodynia a month ago after two months of agony. Diet seems to be the key for controlling both for me, but am still taking Elmiron for the IC. The severe pain from vulvodynia is far worse, though. I'd love to get recipes that leave our high- oxalate foods as well as IC triggers if anyone knows of any!
CommentTo those who have treated themselves with antifungals has anymore tried a supplement called molybdenum. I've had to stop my treatment because i couldn't cope with die-off. I've re-evaluated my diet and am about to start again but will try this molybdenum stuff because apparently the main toxin released from candida is acetylaldehyde (same as from alcohol metabolism) which the body really has trouble breaking down and eliminating from the body. The molybdenum converts acetylaldehyde to acetic acid which can be eliminated from the body. I'll give it a go and let you know how I go.
CommentDoes anyone on this site live in New Zealand? Thats where I am from and all the doctors that i have seen in this country, including my current specialist don't seem to want to try many different forms of treatment or do tests for anything other than thrush. I am really frustrated about this because there is no way i could travel to any other country for treatment.
CommentYou can go to the Vulvar Pain Foundation website at www.vulvarpainfoundation.org and there you will find an order form for their 2 low oxalate cookbooks
CommentHI- What type of doctor deals with the pudendal nerve. i am trying to explore all possibilities. Thanks!
CommentHi everyone, I have written before and just got through a two week dose of boric acid for my reoccuring yeast infections. So far so good. I am currently on topamax of 100 mgs. I am still feeling raw however especially after I wipe myself. I hate to admit this though, but the side effect that I love about taking this drug is the weight loss!! I have lost seven pounds and feel pretty good about the way I look. I feel guilty saying this. My doctor wants to try me on lyrica but I have tried so many drugs and so far this is as good as I have felt. Maybe I can live with the rawness. Does that feeling ever completely go away? I have no more burning (which probably was the yeast). Just roughness. I just wish I knew what I would feel like when a medication works properly for me. Any suggestions from anyone??
CommentTo Gem- I don't in NZ but I do live in Australia feel pretty much alone over here too. No-one has been able to help me either and I've tried just about everything. I guess becaue 'vulvodynia' describes the sypmtons rather than the cause the few things around don't help (or are tolerated by) everyone.. I sound exactly like you - pale, IBS, DV started 6 years ago with a bad episode of thrush which was made worse by topical antifungals. The latest thing i tried was herbal antifungals (have you tried any). I thought, like all the times in the past 'right, this is it - this treatment is going to work'. Well it worked too well- i couldn't tolerate the die-off. Now I have to get liver function tests because the herbalist & I figure its not working so well. I have taken much Nizoral over the years so that might be the reason. I feel like I've wasted the best yeasrs of my life working out this stupid disease and i'm so mentally and emotionally fatigued from it. There's all these documentaries on TV showing scientists curing all these complex disorders and they can't figure this out. Its pathetic. Sorry for rambling...had a bad day!!
CommentHi everyone: I haven't posted in quite awhile. I was diagnosed with Lichen Sclerosis many years ago and treated with Testosterone ointment. Then, I was diagnosed with Vulvar Vestibulitis. I recently saw a woman Dermatologist who treats Vulvar Dermatoses. She confirmed my diagnosis of L.S, even though it's "inactive" right now. She doesn't treat Vulvodynia though. She prescribed Clobetasol, which is the generic of Temovate. I used it 2X daily for a month, then once daily for a month and now 2X a week. My burning has lessened, but I don't know if it's b/c of the steroid ointment or from Acupuncture which I've been getting for several months. Just to be sure, I'm going to stop going to Acup. for awhile and see if I am still relatively painfree without it. I say relatively painfree b/c my husband and I haven't tried having sex in such a long time b/c the pain was excruciating. Now, neither one of us has much of a sex drive. My husband doesn't want to hurt me and I don't want to be in terrible pain afterwards for weeks at a time. I forgot to mention that Estrace cream is the first treatment I tried for the Vestibulitis and it has helped a lot. I still use a small amount of it 2X a day as I'm menopausal. I feel like I'm a Dr. b/c I can't find one who knows or cares what Vulvodynia is. It's so damn frustrating. I spend so much time researching L.S. and Vulvodynia and always trying to find a decent Dr. Anyway, I just want to tell all of you not to give up on finding pain relief. It just takes the right meds. and we're all different. Good luck to everyone.
CommentI was wondering if anyone on this site had ever tried LYRICA. I know somebody else asked this question, but I couldn't find an answer. thanks
CommentTo Liz: This condition has completely physically and mentally devistated me too. I am so young and have had it for nearly half my life. I went to doctor after doctor after doctor, all telling me that there is absolutely nothing wrong with me, and trying to convince people of my suffering was becoming inceasingly difficult with every doctor that i saw. I have never tried any herbal stuff, mostly because i am a student and i really can't afford to pay for all these expensive medications. i would like to try boric acid, even tho my doc says that there is no fungal infection present, yet i always feel like i have one. i want to try guafesien (spelt completely wrong) and calcium citrate. ive asked my doctor about all three but she either dosent believe in these treatments or kinda changes the subject. i wish i was a more confident person so that i could challenge her decisions more, but i tend to just accept the way she wants to do things because she must know more about this condition than me. she did tell me last time i saw her that i have about a 70% to 80% chance of getting rid of this, but i dont really believe her because i have had it for so long and my body probably dosent remember what normal sensation is down there! Is your DV provoked or does it just burn or hurt all the time? Mine is provoked. I was also wondering how old you are? because DV is supposedly far more common in older and post-menoposal women, which makes me feel like even more of a freak and a rareity because i got it so young! Sorry about my rant...havnt really had a bad day but im sick of thinking about my DV every waking moment of every day.
CommentHi, Have not been on this site or posted for well over a year. Thank god i have been symptom free for all that time now with very minor relapses. My pain just started one day raw burning, chaffing, very painful urination and i also had a painful spot on the right hand side. Went to specialists who did find a bartholins gland cyst but only a very small one. I did not believe that this was causing the pain, it always felt as if i had a yeast infection as i was always plagued with them. I used to take heaps of acodophillus and eat live yoghurt every day hoping this would get rid of the burning, it never did. This is what i did to get rid of the pain, full stop. I threw away all soap powders and bought surcare which is especially for dermatitis etc, it is unperfumed, (was also told by gyn i had dermatitis) and washed all underwear with this, and made sure it got a real good rinse. The only thing i can tolerate to wash myself with is original source tea tree and mint shower gel. I have stopped all acodophillus and live yoghurt full stop. This was causing a lot of my symptoms. I have tested this theory a few times as i love live yoghurt, every time i eat it i get some symptoms back, another symptom i forgot to mention was extreme dryness. If you search google you can get bad vaginal symptoms off too much healthy bacteria. I found an excellent site but cant remember what this condition is called. I also bought a supplement called DIDA. It costs twenty pounds for a pack and you start by taking two a day and then go down to one. I often used to read all the guestbooks and cry as i could not stand the pain. I never wore trousers or jeans for over two years. I recently got married in july and things are just fantastic. I am sitting writing this and guess what i am wearing jeans. Also, drink lots of water and crouch forward when you urinate so that the urine does not touch you. When having intercourse durex sensilube is fantastic, it is just like normal secretions. Hope this helps someone, dont expect results overnight, i saw quite a slow improvement and then one day it had gone. Dont give up you can get rid of this awful condition. Good luck. If anyone wants to e-mail me i will reply as i wont be coming back on guestbook.xxxx
CommentHi I am trying to conceive. I have had VV for years. Recently it has been in remission. I have PCOS and now I have started clomid VV has arrived back. I don't really know whether I can continue with lignocaine or if there is anything else I can do?
CommentLadies, I am having great success with natural/alernative methods and Chinese medicine. I am feeling 80% better. I have hope that I can live a normal life. I have had this aweful condition for 7 years with the most horrendous pain for the last year. I was suicidal. I thought of killing myself EVERY SINGLE DAY for a year. I thought about how horrible a wife I was b/c I was so sick everyday- the guilt is horrible. BUT, for the last 3 motnhs I have been getting better and better. I can wear jeans with no pain, I can have sex without almost any pain OR lube. Please research alernative methose (diet, herbs, supplements). Stop going to these docs that have no idea what they are doing. There is a wonderful woman named Wendy who posts on this site sometimes. She got me started on the right path to getting better. Go to her site www.vulvadyniahelp.com. She knows what we go through and is so willing to help others. I worked with her for a while and made major improvements. She is far from me so I needed to work with someone else for the long term. But that doesn't matter. What matters is that I finally stopped going to traditional docs and started researching to find people who treated this condition as a systematic problem. It can be yeast, bacteria, inflammation...lots of things. You need to find someone who treats it that way or you won't get better. Start looking for alternative medicine practitioners who will treat the WHOLE PERSON and not just "down there." Although that is where the pain is, the problem is everywhere. Also, remember that "alternative" docs/practitioners are not all created equal. Do research, try a few out...don't just think that if one alternative practitioner doesn't help you that none will. Not true...you have to keep searching for someone who will. They are out there. God bless, good luck, good kharma, all of it...DON'T GIVE UP! DON'T GIVE UP!DON'T GIVE UP!
CommentTo Gem: I am 29. I believe my DV (which is basically a raw, sensitive to touch feeling) is seconday to something acute that is irritating me (itch) which I now beleive to be candida. I had a really bad acute episode of *something* (I say that because they could never tell me what it was) in late 2001 which led to tight muscles in the right hand side of my butt and pelvis which in turn started to press on my pudendal nerve, one of the spinal nerves, which refers pain to the vulva/vagina/clitoris etc. That accounts for the DV component which I can treat with antidepressants, biofeedback etc but I'm never going to get 100% better whilst there is something still triggering it. Additionally, I had 'vulvodynia' for 2 years before this happened and in my case I believe the root of all my problems to be candida. Apparently you can show up negative on cultures and still have candida burrowed down in the sub-mucosal layers of your vagina. The reasons doctors don't do what you ask is because you know more about your condition than they do and that makes them feel threatened. I can't recommend enough that your own doctor (do you call them GPs over there?) is the gateway to getting the treatment you want which means it is imperative that you shop around for a good, compassionate female doctor without too much of an ego (ask anyone who'll listen what their doctor is like). Mine is quite good - if I tell her I want to try something new or I want a referral to a specialist she'll generally say yes (cept the time I asked for an MRI), although sometimes I take written material to support my argument. Here is a good site on chronic candidiasis. http://www.yeastconnection.com/ I'm not saying this is your problem for sure (God knows I haven't cured myself yet) but you do sound very similar to me. Feel free to email me if you need to.
CommentHi, has anyone had any other kind of infection that wasn't labled yeast or bacteria? My doctor knows I have an infection, one I have never seen before, and doesn't know what it is. He gave me oral antibiotics, which helped a little, but I still don't feel good (well, worse than usual anyway) Thanks
CommentHello, I have had VV for as long as I can remember (I am 26 now), and, like many of you, I am desperate for relief. I believe that my VV problems are associated with yeast and allergies. I aslo feel that these problems have been complicated by my struggles with an bulimia for the past 10 years. I am really trying now to work on my health nutritionally and work on building up my immune system. Vitamin B oil has helped, similar to a low-dose antidepressant. Does anyone have any suggestions of vitamins/minerals, or know of a good holistic doctor in NJ? Also, I started the overnight lidocaine tx for VV about 2 weeks ago. So far, very minor improvement. Has anyone else tried this? Any suggestions would be extremely helpful. This disorder has left me feeling very frustrated, hopeless and isolated. Does anyone know of any support gps in NJ?
CommentHas anyone tried a product 'Candex' for systemic candidiasis. It is made up of enzymes including cellulase which break down the yeast cell walls. Apparently it doesn't cause die-off so I would be interested in anyone's experience with it.
CommentMR-Could you please tell us what you are taking? Thank you
CommentHi Everyone, I have suspected for about a year that I have Vulvodynia, however, I have not had health insurance since January 05 and have not been diagnosed. After reading these articles, I am about 95% sure that this is the cause of all of my pain and other symptoms. I am an IC patient, and during the initial stages of it, I saw several different doctors who prescribed several different antibiotics for my bladder pain. I finally found a wonderful Urologist who diagnosed IC and took me off of the antibiotics (which do no good for IC patients unless that have a urinary tract infection). I notice that my vaginal pain began around this time- when I was on antibiotics for about 4 months straight. This was Feb 2004. My symptoms include- intense burning around entrance of vagina and lips, extreme redness, swelling of whole vagina region, "grains of sand" under vaginal skin, occasional small sores, itching in and around vagina, and occasional sharp pains in entrance to vagina. I have also been tested for all STDs and I do not have any. I have been sexually active since I was a teenager and NEVER had problem with my vagina during sex, or any other time for that matter. Now, I am married and have sex maybe once every 3 months, when I feel so guilty that I just offer to do it. We did not have sex on our wedding night, and only had sex once on the honeymoon (to my regeret- the pain was awful). I am only 20 years old and when I leave my vaginal region alone (no sex, touching, ect), it is usually fine with little to no pain. My major issue is how it effects me mentally and how I have completely lost my sex drive, not to mention my sex LIFE. Like I said, I have no health insurance right now (I am a new Realtor, struggling to make money, cant afford insurance...and right before we got married, my husband changed jobs, thus losing his health insurance. he has since changed jobs 3 times and we now must wait 3 more months until his current employer offers him health insurance). I feel like I have no one to talk to. Its silly, but I am too embarrassed to talk to my mom about it, mainly because it would force me to talk about my sex life and how I was sexually active since the age of 16. My mom is my best friend and in the medical field, and I would love to be able to talk about this with her. I dont really like to talk to my husband about it (but he does know about it) because he tries so hard to be good "its okay, we dont have to have sex. I dont want to hurt you" Which is great, but it makes me feel.....like he has pitty for me. I dont know.....it's like I can deal with the pain, but I cant deal with how it makes me feel. I tell myself "why me", which is an awful feeling. It makes me terribly sad that I am 20 years old and may never be able to enjoy sex again, when I should be in my prime. I also think, how will I get pregnant if I cant bear to have sex? It's just all so hard.... I just want to thank Dr. Glazer for all of the research and effort put forth- this site makes me feel less alone, and I have learned a lot in just exploring the site this evening. I have printed a few copies to bring to my doctor, when I finally see one. I also hope to share it with my mom when I get the courage.....Again, thank you for your great work :)
CommentBreanna – If you have been reading this site, you have probably noticed that many of the posts relate to yeast being at least part of the cause of the problem. Your symptoms sound very much like mine and I am very sure that my problem is an intestinal yeast overgrowth. The fact that you were on antibiotics for so long right before your problem started is a pretty good indicator. Also, yeast can cause urinary type symptoms. I had that also, but it cleared up very quickly when I started to eat vegetables and cut out sugar. I have been under the care of a naturopath (nutritionist) for the past 8 months and have been gradually improving. To my knowledge there is no one medication or quick fix for this problem. One way to test (inexpensively) is to try using a probiotic suppository (vaginally) for a while and see if your symptoms improve. I use a product called Candaclear which you can order from http://www.nutri-pharma.com/index.php?manufacturers_id=193&page=1&sort=1a. It will cost $15.60 per box of 6 suppositories, plus $4.95 shipping for each order. If you have an intestinal overgrowth of yeast, Candaclear won’t cure you, but if you see improvement, you will know that yeast is the most likely source of the problem. I have found that nearly everything can cause irritation in the vulvar region, but Candaclear doesn’t. If you do have intestinal yeast overgrowth, then health insurance probably won’t help you unless you decide to get treatment from an M.D. who will use antifungals such as diflucan and nystatin. Here is a web site that I found where a doctor outlines his program using a cave man type (low carb) diet and three different prescription antifungals to treat yeast: http://drcranton.com/CFIDS.htm#CFIDS%20Paper The program I am on uses natural anti-fungals. I am under the care of Michael Biamonte: www.health-truth.com. He uses a parasite cleanse (very important, I believe), and rotates several different anti-fungals so that the yeast doesn’t have a chance to adapt to any one of them. I am also on a diet that is restricted in carbs (very similar to the Zone diet). I eat no dairy or grains and can have only berries or granny smith apples for fruit. I keep my carbs to less than 80 grams per day and eat lots and lots of veggies. I’ve actually come to like this diet. I recently learned of a program by a naturopath in Cypress: http://www.naturaltherapycenter.com/articles/NATURAL CURES/Candidiasis/index.htm. Another site for treatment suggestions is: http://www.sheilashea.com/candida.html For a general source of information you might want to visit this site: http://www.cfs-recovery.org/docdarren2.html Finally, there is a book that I read recently that has a lot of information: "Complete Candida Yeast Guidebook, Revised 2nd Edition". It's by Jeanne Marie Martin with Zoltan P. Rona, M.D. One important thing to keep in mind is that ultimately, you have to get yourself in a state of good health through proper diet and nutrition. You need to cleanse your body of toxins such as yeast, parasites, and heavy metals. Doctors typically don’t see these toxins as a problem, but naturopaths do and are trained to help get rid of toxins and get your immune system working properly once again. You can get better, you just need to start taking steps in the right direction and don’t expect an instant cure. Feel free to e-mail me if you have any questions. Jan
CommentI am 30 years old and have been living with vaginismus for about 15 years. I have never had a successfully pap and sex has becoming increasingly more painful. I began therapy while I was in FL and that seemed to help. Now I live in Atlanta and I wanted to start therapy again. I also wanted to know if any of you knew of any meds that could help my anxiety when involving sex or doc visits. I am looking for any advice that you many have.
CommentWe are looking for a doctor that specializes in Vulvodynia in Asia or India, as we are relocating to India soon. Does anyone have any ideas or thougts? Any thoughts or ideas will be appreciated. Thanks.
CommentSarah, Tricyclic antidepressants slow down your metabolism A LOT so the weight gain is partially from eating more, but mostly due to this.
CommentHello, Has anyone had pelvic floor dysfunction (i.e. muscle spasms) only? Was physical therapy successful? I have been through three PTs and no relief. Thank you.
CommentI haven't posted for a while. I have a new Dr, who is a urogynogologyst. He has prescribed 30 mg KETAMINE in olive oil which I use 2 or 3 times a day, as well as 20mg of TETRACAINE in olive oil which I use only when all else fails. It has taken a month for my body to be happy with this, but I was patient as the druggist asked me to be and knock wood, things are much better.I havea Dr.appt today, so we'll see how it goes.Have your compounding pharmacist contact Clay at California Pharmacy at FAX 949 642-0725 PS the first question from my Dr was do you have IC? Yes there are many symptoms that are the same, but fortunately I do not have IC. I had a fizzy drink the other day and the following day was pure hell. I do know better. Just trying the waters. Oh well !!
CommentDoes anyone out there only experience pain or an achey pulling feel in the inner thigh and left side opening only. My problem comes and goes but when it comes I can't even sleep at night.
CommentSSS did you read the last guest book about 5 entries from the end? It is by my PT. Her name is Robin Christiansen and she gives a very good description of what she has been doing for me. We had great luck and I hadn't seen her for over three months when I got a bacterial infection and things got started up again. Hope this helps
CommentDoes anyone have a positive opinion of Dr. Goldstein's treatment for vestibulitis? What treatments were successful and ho long did they take to work? Thank you.
CommentJoanna, I went back and read the entry from your PT. Thank you, thank you, thank you!!! I will take a copy of the entry to my PT. I had never heard of ultrasound. I am so happy you are pain free.
CommentSorry, this should be addressed to s denton: I went back and read the entry from your PT. Thank you, thank you, thank you!!! I will take a copy of the entry to my PT. I had never heard of ultrasound. I am so happy you are pain free.
CommentJoanna, Sounds like a muscular problem to me. Have you asked you dr. to be checked by a PT? I had a similar problem.
CommentJoanna, I have the same pulling feeling under my right buttock and upper inner thigh area. which causes nerve pain in my vulva. I see a PT for this. had it for 2 years now. PT has definitely helped w/ the nerve pain. i also take neurotin for this.
CommentI have severe atrophy of the labia and vulva. My doctor prescribed estradiol and told me to see how i got on. However my genitals have shrink and withered taking my clitoris with them!! orgasms are very difficult to achieve now. Is there anything I gan do to restore a little fullness down there?? Suggestions PLEASE
CommentVitaline has discontinued the product Ox-Absorb. Do you know where I can find something that will do the same thing? I've been taking it for l2 years and am kind of in a panic. Any ideas? Thank you, Sheila Gourley
CommentI am new to this site. Has anyone seen Dr. Goldstein for vestibulitis? How has he helped? What has he recommended? I have heard he is good, but it seems from reading this that some people do better finding their own answers than relying on a doctor. Any info would be helpful. Thanks.
CommentThis is the first time that I have ever done anything like this. I was just told that I have this last week. I have been thru so many tests the last 5 months that I was beginning to feel like it was me. I was beginning to think that people were starting to think I was lying about the pain. I now feel like my life is somewhat over. I try to talk to the love of my life and he says he will be there for me but how can I trust that if this gets worse that he won't leave. I have had a bad weekend this past one with having that monthly visitor and it's so painful now that I can't stand to do anything but lay around. I just don't feel like a true women anymore and don't know how to change it. I'm being put on the anti-depressant pills that is offered but scared of that also. I just don't understand but knowing that I'm not the only one has helped me. I'm happy to ready that there is more women out in the world with this. If you would like to contact me go ahead. Thank you
CommentMegan, What diagnosis did you get? Have you seen a specialist? There are so many options out there and so many ways to improve your quality of life -- please don't give up! Anti-depressants can help a lot too. Just do your research, read all you can, and get some good medical help.
CommentI was told from my OBGYN that I have Vulvodynia. My doctor stated that he isn't going to refer me to a specialist until he is done trying the anti depressent pills on me first. I just don't know what to do anymore. I'm tired of voicing my thoughts and getting turned down from every doctor. I'm reading the information that I can find and trying to understand the information.
CommentHi everyone, My name is Rachel, I'm 21, and I think I may have either had vulvodynia and vulvar vestibulitis my entire life, or since I was around 15. After a long time of just dealing with this by not thinking about it, I'm finally starting to explore treatment options but I wanted to ask you all for advice about what to do and how to do it. Although I cannot remember experiencing vulvar pain as a child, I know I always had a very strong fear of penetration and just assumed everything that touched there would hurt, so perhaps something did happen which I cannot remember that led me to beleive this. I first remember experiencing pain when I was 15 and wanted birth control for horrible period cramps. I had had my period for three years but had never used a tampon (or had any kind of penetrative sex), so when I visited the gynocologist and she simply began to feel around the opening of my vagina, it felt terrible. But, I'm not quite sure if it just felt foreign or actually painful. I can say that when I was 14 I was diagnosed with IBS, and have experienced frequent and urgent urination since I was a little kid. The symptoms I experience right now-- sharp pain around the opening of my vagina and just inside it when anything thicker than a pinkie finger is inserted, frequent/burning peeing, constant itching, itching in the grooves between my labia, and some anal itching-- I have definetly had since I was about 18, which coincidently is also when I got my first yeast infection after using anti-biotics and also when I got a kidney stone, which was a calcim-oxilate stone. And up until that point I had been on a high-fiber, and therefore high oxalate diet for the last four years. I've been tested for chlamydia and gonnorhea, and apparently I always harbor a bit of yeast. My gynocolost once gave me a steroid cream which I used in two serperate spurts twice a day for two weeks which did nothing. Then she told me to just relax and wait and see. So I'm thinking my first steps should be trying to go on a low-oxalate diet and trying to control my yeast with daily supplements that you guys talk about. What about hormone creams or anti-depressants? Are those generally options of first resort? I don't know anyone else with this problem, so it would really be helpful to get some feedback from you guys. I live in New York City and am in my final year of school in Iowa. I might move in with my boyfriend for the summer in Memphis, TN. Any good vulvar specialists in Memphis? I'm really glad I found this website, and I hope to hear from someone!
CommentI was wondering if anyone has made the connection or heard of a connection between vestibulitis and birth control. I have had vestibulitis for over a year now and have tried many treatments, many of which have not helped. I am recentely on a tricyclic antidepressent for chronic pain but do not know how that will fair. I am beginnig to make a connection between the nuva ring that I am on and my condition. Any thoughts?
CommentRachel Before you leave the nyc area please go and see Dr. Monica Peacocke, your symptoms sound like a text book case of a vitamin d defficeincy. She has been treating me and I am getting better. One of the first questions she asked me was if I have ever had any kidney stones ( i haven't). A lot of your symptoms are very similar to mine. I urge you to check her out. Please e-mail me for her information. Good luck! Susan
CommentIt sounds like you definately have a problem with oxalates, so I would go on a low oxalate diet for a few months and see if it helps any, you tend to have yeast as well since your doctor said so, try Grapefruit seed extract, i prefer it in water since concentrated tends to go through the system better as well as olive leaf extract, i use caps. I deficiency in ANY vitamin can cause trouble. I found one that it really awesome. Its called Body Balance. It has everything you need. You can try a bottle for free from an online website, its about $7 for S&H. http://life-force-intl.org/ On the left of the screen it will say Liquid Vitamins, and just click on Body Balance. I wrote the company because of some of the ingredients, aluminum, arsenic etc. and she sent me an article which was lost when my hard drive went, but all of the ingredients are from organic plants and very safe. It has all of your needed Omegas, vitamins, minerals and enzymes. I met a woman at a gift store who has a nephew who uses it. He is autistic and she said that he has been much more alert and will follow instructions now. The article I received also mentioned autism. Taking more of any vitamin supplement that is recommended by your doctor is not safe. So do not take a ton of D because you feel it might work. See a doctor first. There are prescription vitamin D supplements.
CommentBioHRT is an online health care organization that provides professional medical services to female patients who suffer hormone imbalances due to PMS and menopause. BioHRT's physicans specialize in custom Bio-identical hormone replacement therapy and they can prescribe a treatment program designed to improve your Quality of Life and have it delivered right to your door.
CommentI am posting regarding vitamins in general and Body Balance that Candi mentioned earlier. I have been reading about and taking vitamins and nutritional supplements for over thirty years. I'm no expert but I have picked up some general information. The product Candi talked about is a great start for someone who does not take vitamins. I read the ingredients and while it does not contain mega quantities of different vitamins, minerals, micro nutrients and aminos, it does contain adequate amounts of many things we don't get from the average diet. Secondly being in liquid form makes it easier to swallow and more simple to use as opposed to taking many individual capsules and tablets. I would advise everyone to read a little bit about vitamins so they have a basic understanding of how they work and what they do. You may want to supplement the Body Balance with an individual vitamin or supplement as you learn more and see how you feel. Best of luck and to all please remember to eat with vitamins and always drink plenty of water.
CommentHi- I was wondering if anyone has used Dr. Glazer's biofeed back program. If you have what have been your results? Thank you Jennifer
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CommentHi, Iam 18 and last year I was diagnosed with Vulvar Vestibulitis, I have tried Xylocaine and Amitriptoline and nothing has worked. Does anyone have any suggestions I could talk to my gynocologist about? Thanks
CommentHi, I have just been diagnosed with Vulvodynia, and possibly also Endometriosis. . however, after reading, it sounds like I may not have Vulvodynia because I am not in constant pain 24 hrs a day, mainly during and after sex as well as cramps/pelvic pain which I assume is more associated with Endometriosis which occurs at other times. Do you have to be in constant pain to be diagnosed with Vulvodynia and should I attempt to try and figure out why I have this?? I have been prescribed Amitriptyline HCL, an old anti-depressant. . but I don't like the idea of messing with my head to cure my nerves unless it is really worth it. . has anyone tried this, suffered the side effects etc? Any help would be great. .
CommentSam, I was on Elavil (generic is Amitrip.) for quite some time. It didn't help my pain at all, but it made my moods so much better. I do not care for antidepressants personally, but they seem to help with some womens pain, if it nerve related. Apparently mine isn't. I can't say I was depressed just before taking it but I was pretty sad because I was in pain and knew it more than likely wouldn't go away. The Elavil helped me to calm down and not cry all the time and therefore I was aboe to concentrate on studying about my condition. I have not been on it in a few years and my pain is not always present. I went from crying everytime I walked, wearing skirts daily no intercourse etc, to wearing jeans everyday, having intercourse and riding my bike again. My pain flares during ovulation and thats when I use a lidocaine 5% ointment. I get it half price online from canada. Its called Lidodan 5%. I take Body Balance daily since its got everything in it I need. You need to get most of your vitamins from food anyways. I also can;t swallow pills. It tasted pretty yucky though.
CommentHey, I have tried amitriptoline and it didnt help with the pain whatsover, and iam still lookign for something that will help with the pain and so far i havent had any luck.
CommentI have had DV, muscle spasms for a year now. I have tried PT with little success. I am having Botox injections this week and continuing PT. Anyone had any luck with this? I will report back on my experience.
CommentMadison and Ladies Please see my postings from Oct 25 and 26. Having wonderful results. Be careful with the Lidocaine. After time it will sensatize you, meaning it will make things hurt more.Elavil made me gain 20 pounds in three years, not to mention being tired all the time. California pharmacy is waiting for calls from your pharmacy. Dr.Matthew Clark in Newport Beach Ca. is very patient and uses second opinions without being ego involved.Robin Christensen/ Womanology is my PT. See her posting in guest book 24, about 10th from the end.Pain free for a month. That includes great sex!!
CommentI liked your site. It gives me many ideas for my books Bryan (bryan.quighley38763321577@hotmail.com)
Comment***does anyone notice a hair growth problem since vestibulitis? i noticed since i got it i had abnormal hair growth on my breasts,butt,face,upper arms,stomache, upper thighs, back and shoulders.. and it gets worse!!! ive gotten some blood work done but it all comes back normal.. i dont have a thyroid problem!. what can i do to stop this hair growth; its ruining my social life. Does anyone have any suggestions or what type of Dr. to see or maybe certain supplements to take. My Dr. said to go on birth control but i notice that birth control aggrivates my vestibulitis.
CommentTo THP: I know you said you had blood work done but the unwanted hair still sounds like a hormonal thing. Just a few ideas, but if your blood work was done by and endocrinoligist get specific numbers and ask exactly where they fall in the range of "normal". I say this because low normal for estrogen and high normal for testosterone might be a problem. One of my wife's gyn's once prescribed testosterone cream to strengthen her vaginal tissue and of course the warning on the medicine is for unwanted hair growth. Please let us know if you find the cause. Thank you and best of luck.
CommentHi to everyone. I am so thankful to have found this website, and that all of you have shared your stories. I have found so much comfort from what many of you have said! After suffering for the last 7+months, I finally was given a diagnosis of vulvodynia by the 2nd gynecologist that has seen me, last Thurs. That same day I had a TRAUMATIC, PAINFUL biopsy (5 'samples' taken!) and I'm very anxious for the test results this coming Thurs. The Dr wanted to be sure and rule out the last few things that I haven't been tested for, including cancer! Yikes! I've never had any of these symptoms before, but I've read some past postings where some of you have had my same problems: Before this started, I had the flu and was given antiobiotics, which brought on a yeast infection, and then voila! The pain began. Deathly painful intercourse right at the 'point of entry', and raw, burning and itching skin in that area. After several several appts with my 1st Dr (nurse practioner at the Gynecologist's office, but a wonderful, compassionate, easy-to-talk to woman) which included treatment of yeast infections, estrogen cream (and discovering I'm allergic to parabens so I had to get a specially made compounded one), use of boric acid capsules (suppositories), and tests to check for chancroids or any other possible STDs, finally she referred me to the OB/Gyn there at the clinic (she was stumped). He was pretty sure of his diagnosis from talking with me and then simply looking at that region of pain. Thank God! It all makes sense now, that there is a name for it, and websites and help out there and women who are willing to share their experiences. I am so appreciative of all of this! Also, from websites and women's shared stories, I've learned more about proper "feminine hygiene" and that lubrication (the brand "Nude" is the best ever!!!!!!) is a MUST for me, and that using too many things can cause more irritation, and that there is hope for me - it sounds like, anyway (!!), and my boyfriend is being so loving and supportive even tho for our 9+months relationship now we've had a very restrictive sex life....but I now know I'm still "okay" as a woman and a person. It's still so very scary and I easily cry. Thank goodness I already have a therapist that I go to because if not I'd definitely need one! There was one point where this all did clear up for me: For 2 weeks of no sex, and using boric acid capsules 1x a day for 14 days at nite, and estrogen cream topically a.m. and p.m. for those 14 days. The first time I had sex after those 14 days, it was PAIN FREE!!!!!! I nearly cried. But by the 2nd day/2nd round of sex, there was slight pain. The 3rd time, it was all back again. I think that's about it; my story in a nutshell. I will continue to read these postings (there are so many archives! It's great!) and pray for all of us. Thank you for reading this!
CommentJulie- Did you know that yeast infections can be passed back and forth? You apparently know that boric acid can treat yeast and you were pain free after using it, so that should tell you something. Have you tried using it for 2 weeks again? You had pain after intercourse. It is very possible that he passed that yeast back to you. Some doctors still try to say it's not passed, but the more up to date, newer doctors are finally saying this happens. Does your BF have any fungal issues? Athletes feet, nail fungus etc? Maybe for you it's as simple as treating you both for yeast. I know for me personally, I got vestibulitis after being on an antibacterial off and on for 10 months, Flagyl. Many women have gotten VV after taking this drug. I was told it wouldnt cause yeast, my present gyn said it does. When I treat for yeast and abstain I feel so much better and then after intercourse it comes back. My BF has recurrent athletes feet and toe nail fungus. Hes tried every prescription treatment and we are now trying Pau D'Arco tea orally and as a soak, as per the health store lady. There is a fungal problem there and I truely believe we pass it back and forth. To properly treat for yeast you need to treat topically AND orally. You were pain free once, you can be again!
CommentHi, I have been dealing with Vulvodynia for two years. I was lucky to find Andrew Goldstein when my symptoms started. However I did not necessarily got better over time. I have been takin Neurontin and it was of no use. I sincerely believe that Yeast Infections lie at the heart of the problem. I have been using NuvaRing as a birth control method for the last two years. However I am not sure if Nuva Ring also contributed to the problem. I just stopped Nuva Ring. I also stopped taking Neurontin and I am trying to follow a diet, to get rid off the Yeast in my body. It has been tough. Very tough. I have a very understanding husband.... Yet it is emotionally draining to deal with this. I don't know what has gone wrong at what point. I have also started using Neocutis. I don't think it made a tremendous change. At this point, I feel hopeless and I have no idea where the solutions are...
CommentI am interested in knowing if anyone else finds a cyclic response to their pain? I have primary vestibulitis with burning pain in the vestibule (opening) upon any kind of penetration. That has always been my big symptom, but I've noticed recently that I have other stabbing pains in the vulva, as well as itching at random times. I have begun charting my fertility and I've observed that my pain is less around ovulation. Does anyone else have this same cyclic allieviation or lessening of pain mid-cycle? Also, in response to a few entries I've read, yes, I have heard of a link between hormonal birth control and vulvar issues. Also, yes, it is possible to have vulvodynia without being in constant pain. There is a specific type of vulvodynia, called vulvar vestibulitis, which is pain upon penetration (what I have). I recommend two books: The Vulvodynia Survival Guide is one, and the other is The V Book, by Dr. Elizabeth Stewart. To the woman who wrote about atropied genitals, have you researched Linchen Schlerosis? One more thing: someone wrote about symptoms of |
