Hello Everyone,
I am a 24 year old female that has been suffering from Vestibulodynia for 5 years. First I am just going to cut and paste some emails that I have sent to other people that have been suffering with this same problem, instead of retyping everything. Everything below are symptoms that I have experienced with Vestibulodyia, and my story of how it started. If you are only intersted in the treatment scroll down to where you see the exclamation marks.
I started birth control around 14 or 15 like I stated in my letter, then at 18 I went off of it because I was getting ready to leave to study abroad in Norway. I left in August of 2003 and didn't have a period until about December. I also just found myself a Norwegian boyfriend at the time but we were not sexually active. On New Years Eve I stayed at his house and we had oral sex, the very next evening I had a burning sensation and a whitish discharge. However, I cannot recall any itching or odor. A friend of mine informed me that I most likely had a yeast infection and that I should try an over the counter suppository. Due to the fact that I was in a foreign country and did not have a doctor there, I went ahead and took her advice. I tried the five day suppository package and it seemed to help some, but then a day later it came back. I went and got another supply. About two more packages later, I thought it important that I tell my host mother about this problem so I could see a doctor. She took me to her regular doctor (not gyno) who did not check me out but just prescribed me diflucan. When the diflucan didn't work, I tried another stronger suppository and then a vinegar douche that my host mother told me she did in the 60's. I'm afraid I added too much vinegar because shortly after that a had more whitish discharge and more burning. Perhaps I really upset my normal vaginal ph...not sure. I went to three gynecologists in Norway in about a 3 month time period and each one would test me for everything (yeast,bacteria,std's,etc.) and the tests always came back negative. I still to this day don't know if what I had was a yeast infection because the tests always came back negative. I either never had one to begin with, or the medication I took affected the test results. Anyway, after the discharge went away I was left with a burning sensation in the lower part around the vaginal opening. One gyno advised that I go back on birth control and I did. It didn't help so I went off again. Three more months passed until I finally returned home. It took two visits to my gyno for her to tell me that i had vestibulitis. She then presumed to send me to someone else who knew more about this issue. From there I went to another doctor who flat out told me he didn't know that much about the issue, but he was willing to try some of the things he read about. First he gave me a steroid cream that just made it worse. Next I was given diflucan every other day for a period of about 3 months. No results. I was given lidocaine which numbed the area temporarily but also not completely. I stopped seeing him because his next advice was surgery.. scary! I sucked it up for another year because I returned to Norway. I was still with my Norwegian boyfriend but we might have only had sex twice that year because it was too painful for me. Sometimes it was hard for me to pinpoint where the pain actually was because now it was in the entire vestibule. The burning, stinging sensation would range daily on a pain scale for 1 to 10 with no known cause..it was so frustrating! I finally returned home the summer of 2005 to start college. I also started dating someone else, and the painful sexual struggle began once again. From 2005 to 2007 I sucked up the pain and tried different birth control from yaz, the ring, to ortho tricyclin, etc. Everytime I went on birth control the pain was worse. As much as I tried to figure out what was causing my pain, I could never arrive to any conclusions. But the fact that it was more painful on birth control was obvious. Then in the summer of 2007 things got worse. I started to have more burning with urination. I would take cranberry pills just to find out that they were making my pee burn more, along with wine. God, that was depressing. I figured I was now becoming more sensitive to acidic foods and that they were simply irritating to my urethra and my vulva. I then read that the tissue in the vestibule and in the urethra are similar. The burning became so bad that I finally found another doctor in the Columbus, Oh area (I go to Ohio State), who had a good reputation. Right away she put me on Gabapentin. When that didn't help she just kept upping the dosage until I was on 2400 mg a day. I am still on this but plan on getting off at my next appointment because it is clearly doing nothing for me. I have been on it for a year and a half. She also prescribed me an estrogen cream that I was to use nightly. Estrace irritated my skin so a got a special estrogen in petroleum base from the pharmacy. Sometimes I thought this made the skin feel better, but not entirely. Next she put me on the antidepressant Elavil. My body just couldn't handle it. I was tired all the time and never wanted to do school worse, plus it was doing nothing for my pain. Finally I started the biofeedback therapy with electric stimulation. Honestly, this is the only thing that seems to work about 30% of the time. Around this time I started to notice a trend. I had been off birth control once again for quite a few months, and I started to notice that the pain would get much better in the middle of my cycle for about 2 days. This point was around ovulation. I was so excited because now i was actually having a couple of pain free days a month with some sex drive. I told me gyno about this and the fact that birth control made it worse and she told me that that wasn't physiologically possible..what the hell!? During the same time I also bought a little handheld Tens unit that gives you electric stimulation if your vagina to help relax the pelvic floor muscled. Sometimes it works and sometimes it doesn't. I am know to the point where I want to find the underlying cause of my problem. I am sure that my pelvic floor muscles are very tense, but i believe this is because of the pain. Of course my muscles are going to tense up if I am in pain, but I do not think that tense pelvic floor muscles are the main cause of my problem, just a reaction of the vulvodynia. This same doctor also put me back on birth control, but I got off on my own after about 3 months because I noticed an increase in pain and complete loss of libido once again. With some research I have found that testosterone surges around ovulation, and is drastically lost when women are on birth control. I do not know if I have a hormonal imbalance, but I know I have absolutely no sex drive on birth control, and rarely have it when I am off birth control. I am so sick of being in pain and not having a libido and it definitely takes a toll on the relationship I am in now. I feel less of a woman, guilty, ashamed, inadequate, and sometimes insecure. Not only do I have to deal with this problem, but now my partner does too. It's a horrible feeling and some days I am so close to just leaving to deal with this by myself.. Sorry I wrote you my entire life story, but I felt it important to add details. Thank you for listening and if you could inform me of some of the steps you took to treat yourself. How did you know for sure you had a hormonal imbalance? I know you have hair loss and other signs, but I don’t seem to really have other sings except sometimes I break out on my chest. My periods were even fairly regular even off birth control. I don’t really know what to look for and I don’t know how to go about treating it even if I thought it was a hormonal imbalance. I am also thinking about going to a different doctor in a different state. I would like to get an appointment with (name removed).
My burning/stinging pain is almost constant, but the pain fluctuates on a pain scale of 1 to 5 throughout the days and throughout my menstrual cycle. A trend that is very obvious to me is the decrease in pain around ovulation and the increase during the rise in progesterone (towards the end of the cycle). I can actually have sex at the time that I am ovulating and enjoy it somewhat but it only lasts for about 2 days. so weird! However, when I am on birthcontrol I have pain which is worse throughout the entire cycle. Birth control = shit. If you are on it, get off! My doctor keeps telling me to go on because physiologically it couldn't make my problem worse...I want to smack her...does she think I am making it up? I also noticed that when I eat acidic foods and especially wine, it burns more at the end of my urethra and causes more burning in the vestibule. Do you sometimes have burning urination also? I am sometimes confused on whether I should call my problem vulvodynia or vestibulodyina because the pain is strictly limited to the entire vestibule area, but it is constant. Yes, touching it provokes more pain, but I have definitely feel the burning sensation just sitting around or walking. Some women the have compressed nerves in their lower back or spine get vulvodynia, but also have burning or shooting pains in their lower back or thighs. This is where the gabapentin comes into play, since it is designed to block these pain signals. I have been on 2400mg of gabapentin for a year and a half and I believe it has done NOTHING. About two months ago I started to get off of it myself and now I am down to 600mg a day. Although this is without my doctor's consent, I really could not give two shits right now because I hate being on drugs and I am fed up with my doctor who thinks she knows my body better than I do. Since that gabapentin did not work, I believe there is more to my problem that just "nerve pain". There have been women whose vulvodynia has been due to hormonal problems. Are your periods regular? Do you ever get headaches? These could be signs that you have hormonal imbalance which is causing the vulvodynia. In my case I believe that hormones are related since my pain fluctuates throughout my cycle. Now, a hormonal imbalance might not be causing MY problem since my periods are pretty regular, but hormones definitely affect my pain...why? Possibly because your vestibule tissue needs adequate levels of testosterone and estrogen. I have tried estrogen cream on the area with no success but have never tried testosterone cream or a combo of both. This is something I am working on. I found a doctor named (name removed) who seems to be the best..here is his website..one should definitely check it out. http://cvvd.org/ Read everything he says about the different causes of vulvodynia and vestibulodynia. There seems to be many different causes and therefore many different treatments. If you do have an abundance of nerve cells that have grown in the vestibule tissue, then surgery or removal of that tissue could also help. I am scheduling an appointment with this doctor in the summer. If you have any questions feel free to email me again. Btw, has the gabapentin cream helped at all? I read about that but my doctor doesn't prescribe it. I get lidocaine which kinda numbs the area for about 2 hours and then goes away. I also have an E-stim unit in my house which sometimes helps some with the pain, and I do my pelvic floor exercises which sometimes helps with relaxing. However, I feel that the tension of pelvic floor muscles is due to the pain in the vestibule..not the other way around. so I feel that if I am not addressing the underlying problem of the pain, the pelvic floor therapy will not help. Normally pelvic floor treatment is for patients that have vaginismus (or involuntary contraction of the muscles).
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OK here is an up to date version of what is going on with me and what I know about my vestibulodynia. I went to see Dr. (name removed) in Annapolis, Maryland. He is world renowned at being one of the best in female sexual disorders and I was tired of my doctor not listening to me. He does an extremely thorough evaluation to find out the cause of your vulvodynia. There are about 12 different causes so of course the treatments for each patient will vary. He told me that 75% of the people that walked into his office had vestibulodynia, and 70% of those 75% had it because of birth control pills. Especially the newer birth control pills like yasmin, orthotricyclin low, nuva ring, etc. The reason is because bc permanently alters you liver to produce more sex hormone binding globulin. SHBG attaches to the free testosterone in your body and estrogen. Your vestibule tissue needs adequate levels of testosterone and estrogen and contains those receptors in that tissue. When the tissue is not receiving those hormones it gets irritated and inflamed. This also explains why pain sometimes fluctuates throughout a woman's cycle. Your testosterone levels rise and fall too. I couldn’t believe the pill could do something like this because I haven't been on the pill for a year, but he said it didn't matter because there is research being done on how it can permanently alter how much SHBG your liver produces. Scary! A week later I got my lab results back for how much FREE testosterone was in my blood and I had less than half of what a normal female my age should have. I now have a testosterone and estrogen compound that he prescribed. I apply it to the Vestibule tissue and I can already see a difference. I encourage everyone to check out his site. www.cvvd.org and read everything you can!
(Physician name removed by EmpowHER Moderator.)
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Add a Comment129 Comments
So I wrote on June 26, 2009. And the girl after me reccomended the Low dose naltrexone (LDN) . I had written that I tried EVERYTHING. From elavil, to accupuncture to pudentdal nerve blocks to cream, to therapy. I just started on the LDN about a week and a half ago andthink I feel a difference. I am trying not to get too excited because I just started feeling different a week ago (i.e. I tried to have sex and wasn't in extreme pain I could actually enjoy myself, and relax a tiny bit which hasn't happen in I would say years). I am still doing pelvic floor therapy which I think is important.
I am not 100% sure if it is the LDN but something made me feel a little better and it started when I started taking the LDN. I will post how I feel in a month.
August 5, 2009 - 12:36pmThis Comment
Hey Anon,
I know it hasn't quite been a month, but I was just wondering if you are still seeing a difference and if so, to what degree?
I am at the beginning of my search for a cure (when I say beginning, it has been 11 months since the pain started, but that doesn't seem nearly as long as some of the girls here).
Thanks so much, I'm very keen to hear how it has worked for you.
Kristen.
August 30, 2009 - 4:50pmThis Comment
Hello everyone, I also suffered from vestibulodynia for years and years and repeatedly got the run-around from my doctor (it's all in your head, just try to relax, use lube during sex, have a bath and a glass of wine before sex, you have normal hormone levels, etc.) before finally turning to a sex therapist in desperation, thinking maybe the doctor was right and I was doing this to myself. I had my first appointment with the sex therapist, and what a relief to finally be taken seriously! She recommended I see a physiotherapist who specializes in pelvic floor pain and helped me jump the waiting list at a local clinic. Best of all: she told me it wasn't in my head so I didn't need to go back to her for "head therapy"! At the clinic I underwent several months of physio that included bi-weekly appointments and exercises that I could do at home, either by myself or with my husband. The exercises are things like stretching the muscles in a certain way using your fingers and what I jokingly call "the probe", and basically re-learning to control the pelvic floor muscles so that I could relax and tense the muscles at will instead of them just doing whatever they want. My appointments also included some biofeedback, which is basically an electrode placed inside the vagina and hooked up to a computer to monitor me flexing and relaxing the muscles. A computer program showed me in real time what my body was doing, and I used that feedback to re-program my brain into knowing what the heck was going on down there. After following the treatments (religiously) for about four months I had no pain whatsoever and my physiotherapist told me I could go ahead and have sex again. I've been pain-free for two years now, though if I do start to feel pain again I now have the tools to help myself before it gets too severe. I didn't have to use any creams or other medications during or after treatment. I highly recommend that if you have vestibulodynia and you can find this kind of clinic in your area, you give it a try. If you have questions about where I am and the name of the clinic I went to please send me an email at: vestibulodynia (at) hotmail (dot) com. (I just set that email account up for this post.) I don't want to provide my real email address, location or the clinic name here because I'm a very private person and prefer not to broadcast my personal information to the entire internet. Best of luck ladies!
August 4, 2009 - 6:37amThis Comment
I had UTI and vaginal pain since Feb. I went to 7 different doctors with failed treatment. Until I went to a specialist in Long Beach, CA. I was very persistent in finding "what was wrong wtih me". I thought it was stress at first, wich Im sure triggered it...but recently in june I was diagnoised with uretheral stenosis (narrowing of the urethera) and I had a dilation. Once there I was diagnoised with IC (Intersistitial Cystitis aka painful bladder syndorme) and Vulvodynia. I am currently taking Elmiron from which I feel 75-85% better..and Urelle for ocassional pain. Im doing accupunsure, going back to Yoga, eating right, and started to see if I can take some herbal remedies...as far as the VULVODYNIA..i'm not sure how to adress that problem. It seems all I can take are anti-depressents for that, BOUT HOW ABOUT SOMETHING NAUTRAL? DOES ANYONE KNOW SOME NATURAL REMEDIES TO TAKE OR WHAT TO DO TO KEEP IT UNDER CONTROL..im sure its a hormonal thing, ive always had problems with hormones...the vulvo pain is worse during pms and my cycle..it suxs! it burns, and stings, and itches, it really does sux, and i only take tylenol, and put ice on it..not much i cando..ive heard of puting aloe vera or taking that..if you have vulvodynia or ic i welcome you to email me or contact me here! ari~
July 20, 2009 - 9:53amThis Comment
My doctor didn't think that the hormonal creams would help at all because she said that if my period is fairly normal then that is an indication my hormone levels are normal. She said I could try and even wrote the prescription but doesn't think that it will help me because I was only on birth control for about 4 months 5 years ago and that people who benefit from hormonal creams are people who have been on birth control for some time. I didn't fill the prescription but am considering this week. I guess why not I have tried everything else. I am going to take the advice of taking LDN.
I had many theories but now I'm really just lost . All I know is that it started a few years ago after I started seeing my boyfriend. I even thought I might be allergic to him for awhile! The whole "nerves have memory theory" I believed in for a long while because when the pain started I was having constant UTI's and it made sense, but the pudendal nerve blocks that were suppose to fix that didn't work. I even was seeing a therapist thinking that anxiety and stress may have caused the problem. Given that the pain increases when I am on my cycle gives me reason to believe it could be hormonal but I'm really not sure what to do with that given my obgyn is sure it's not.
June 29, 2009 - 1:24pmThis Comment
So I am 25 and I've had chronic pelvic pain for 5 years. No sex, no riding bikes, no tight pants, no just being normal! It began with recurrent bladder infections, I figured they were due to my body's sensitivity to my new boyfriend and us having sex. Eventually the infections went away but the pain remained. I was diagnosed with IC and treated for that for a couple years (no improvement) and then later diagnosed with vestibulodynia. I've tried EVERY treatment. Various medications (gabapentin, elavil, elmiron), creams (lidocaine, gabapentin), diet (IC and vulodynia), pudendal nerve blocks (very expensive), acupuncture, herbs, pellvic floor therapy, biofeedback regular therapy, allergy medication. I received numerous touch (visual) tests, std tests, other blood tests, a MRI, a cystoscopy, ultrasounds, etc...
Today I sat in my Doctor's, one of the best OBGYNs (in the field of vestibulodynia, I found her on the internet and sought her out) and she gave me NOTHING. Not you should try this or that....nothing. Ive been seeing her for 3 years; every 7 months she tells me to try this or that (pills, meditation, cream, injections..) or see this or that person, but today nothing. I left her office so hopeless that I could barely make it to my car to break down and cry.
I dont know where to go from here. I stillhave the same very supportive understanding boyfriend but I am so lost. I almost feel like I need to break up with him becasue of the pressure of not only not being able to have sex with him but also being so turned off I have a hard time being sexual at all. Everytime I'm mildly turned on the pain rises to the point I have to stop. I feel like it s such a sick mind game. It's hard to be happy but I try so hard to seem happy because I feel its the least I can do for him being so supportive.
Does anyone having ANY advice?
June 26, 2009 - 12:51amThis Comment
Go see Dr. (name removed) . He has offices in ny, wash dc and annapolis md. He is a pioneer in this field. Sounds like you've tried everything but surgery. I live 4 hr away but it was so worth it. He knew what was wrong with me before he even examined me. i haven't had treatment yet, but i'm sure he's the best. Good Luck. (Prayer works too.) Will send some up for you.
January 7, 2010 - 11:59pm(Physician name removed by EmpowHER Moderator)
This Comment
Hi there. I am a 31 year old female who has been suffering with vulvodynia type symptoms for almost 4 months, although have not yet been diagnosed. It started with a yeast infection, then a UTI and then bacterial infection...All treatments worked for a while and then the symptoms all came back. Mostly its the burning that bothers me. Ive tried to go gluten and dairy free but find it doesnt help. However another concern is the rectal burning as well. Usually after i use the restroom. Doctors have given up on me. Ive tried chinese medicine, acupuncture, gynos, etc etc. i know that i should whine too much as i have read that people have been suffering for years. and i feel for you all, as i know how uncomfortable it can be. its scary to think that we will be living like this our whole lives. Is there any advice you can give me as to what kind of doctor to see? aside from gynos? Im currently in san diego, but, will be moving to the new york area. thank you so much..god bless.
February 6, 2010 - 3:18amThis Comment
Where do you live and where is this doctor located? Why hasn't she recommended hormonal creams? Did you have any of your own theories for where your pain stems from? (Hormonal connection maybe)?
June 26, 2009 - 10:37amThis Comment
Reading your story above, I feel like I am reading my own. My earlier post (April 24) discusses all my lovely details. I really feel like mine connects back to taking Yasmin birth control in some way. At the suggestion of Adotfritz's post I am going to get my testosterone levels checked because they were very low a couple years ago when tested...and my dr. thought my body was reacting to the pain and producing less...anyway - I want to mention something that I am scared to say is starting to help me, but I have noticed an IMPROVEMENT in my pain where NOTHING has worked for SIX YEARS. I can't even believing I am typing that statement right now but about a month ago, in Dr. Mercola's newsletter, he mentioned something called LDN (low dose naltrexone) for various autoimmune diseases. It piqued my interest because there are theories that vulvodynia and even IC, for that matter, are autoimmune. Plus vitiligo runs in my family (that awful skin disease) and I noticed I am starting to slowly develop white spots (which you can only imagine makes me feel like I have fallen apart on the inside and now outside too). LDN has been used to stop the progression of MS and healed patients with Chron's Disease so it made me think - why not me? Naltrexone has been around for a number of years to help alcoholics and heroin addicts (LOL) recover from their addiction; this dr. in NY (Dr. Bihari) found that in very small doses it was helping people's bodies regulate themselves...it causes your body to produce extra endorphins (which I swear I know I was lacking given the pain, frustration, etc.) but ONLY in the amount your body is lacking. It's fascinating. So I went to my dr. (who already knew about it) and he prescribed 3 mg for me to try. When I tell you the NEXT freaking day, I noticed that my urgency to pee was CALMER and that my stomach (IBS inflammation issues) was calmer too. It freaked me out. I have tried EVERYTHING. I have been taking it for only two weeks. I can't say if it is going to heal me or what is going to happen - all I know is that as someone who has tried everything dr. prescribed and natural (I hate taking medications) I can totally tell a difference. I don't know of anyone else who has tried using LDN for vulvodynia/vestibulitis/IC/pelvic floor dysfunction issues - and I am happy to experiment on myself. The medication is extremely safe in fact it's really your own body's immunity that gets strengthened and is doing the work. The LDN shuts off opiod receptors in your brain for a few hours and tricks your body into making more of its own chemicals. It's a fascinating concept. Normally I wouldn't post anything until I had tried it for a significant period of time but I feel different and better. I feel more like myself. Just a note that LDN is FDA approved at stronger dosages so if your dr. prescribes it, it's considered "off label". Just google and you will find immense resources. You may have to try several doctors if your doctor isn't open-minded or willing to explore the information about it. If anyone has questions for me - please feel free to ask or if you want to speak offline there must be a way through this site. I have felt like something is "not right" for so many years and now I feel like I could be on the path to recovery. Here is Dr. Bihari's webiste: http://www.lowdosenaltrexone.org/ I think it's worth exploring.
June 26, 2009 - 5:44amThis Comment