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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I am a 24 year old female with very similar as what is described here in the story. I believe I 'got' vulvodynia or vulvar vestibulitis (as it is commonly referred to by both names, and I have both diagnosis in my med records) at 15 years old. The first time I attempted intercourse it caused me pain which has never fully gone away. My vagina tore on both sides and at the top. Being so young I did not understand what was wrong with me at the time. I thought sex was painful for every female and the blood was normal. When I complained of the pain about age 16-17 I was checked for Intersticial Cystitis (IC) because of family history of that disorder. I'd like to note that I was taking the pill at the time I 'got' vulvodynia. I tested negative for IC of course and no one could find out a problem. My doctor actually removed some of my tissue surgically at age 17 from the area. It was scar tissue from the first time I had attempted intercourse. I also quit taking oral contraceptives at that time. I was relatively normal for less than a year following the surgery and my stopping the pill. At 20 the pain had gotten bad enough that even without insurance or financial resources I went back to the doctor, finally getting a diagnosis. I was perscribed steroid cream. It didn't help. I was prescribed estrogen cream. It did help some. I got an IUD ( Mirena ) put in and I believe it has made me steadily worse. I have tried Lidocaine without much success. I have tried Elavil, which made me so tired and confused I couldn't function, as well as numerous off the chart drugs. I can't have sex anymore. And I have trouble sleeping because at the end of the day I am almost always in too much pain to be comfortable. My doctors also think that my Mirena does not contribute to the problem. I think that they're wrong.
October 13, 2010 - 11:02amThis Comment
https://www.empowher.com/sexual-well-being/content/what-are-sexual-steroids-dr-goldstein-video
I found this on the website...pretty interesting.
I just posted a question..decided to sign up with a name :)
August 24, 2010 - 8:10amThis Comment
HI:) Again thank you so much for your posts. I went to my OBGYN and basically demanded that she give me the testosterone cream after I have tried everything else. Of course, she refused to check my testosterone/SHBG and now my insurance has run out because I just graduated. In interest of fixing the problem sooner rather than later. I filled the script at a compound pharmacy and will pay out of pocket, but all it says is to use the cream every other day. I have already been using Estrace (Estradiol) nightly and have seen some improvement but penetration is still painful. Does anyone have any more info about the prescribed directions for these creams and if you have to use them forever or get your hormone levels checked regularly?
August 24, 2010 - 7:53amThis Comment
Hi, women,
Last November, 2009 I went to Dr (name removed) in San Diego who finally diagnosed me with vestibulitis. Even though I didn't go with his prescribed solution (I'm 61), by knowing what I have, I seem to be more capable of controlling a flare up and I accept it more. What I want to tell you is, I paid $1100.00 for the 2-3 hour interview and my insurance would not reimburse me at first. But I wrote a letter back and made it quite clear that I did not go for fertility but for the vestubulitis. I sent Dr (name removed) long diagnosis paper, and I got $800.00 back! So make sure your insurance knows why you went, and perhaps they will give you a portion back.
(Physician name removed by EmpowHER moderator)
August 23, 2010 - 8:17amThis Comment
Thank you so much for this post. I am 24 and facing the same situation you were in. I can't tell you how much I appreciate your advice. Gail
July 10, 2010 - 6:19pmThis Comment
I visited Dr. (name removed) today! I was having the same problems you did and was so frustrated with going back and forth between doctors giving me things that didn't work or trying to convince me that nothing was physically wrong. I will be starting the same cream you were on as soon as it arrives in the mail. I am happy to hear that your symptoms are better and I look forward to seeing what it does for me! How long did it take you to see an improvement with the cream and how did your surgery go?!? I am very curious. I have a follow-up appointment with him in 3 months and am hoping that the cream will help and that I do not need surgery.
May 5, 2010 - 3:48pm(Physician name removed by EmpowHER Moderator.)
This Comment
So I ended up having the surgery In March and I am about 75% better. The really painful tissue is removed, and I am still using dialators to stretch things out. In my opinion, a vestibulectomy is the only things that has significantly improved my condition, but vestibulodynia is caused by different things so this treatment might not be for everyone. I happened to have too many nerve endings and the lab reports confimred that. The recovery from surgery sucks, but its worth it...let me know if you have any questions
September 16, 2010 - 2:09pmThis Comment
Hi everyone.
It's very encouraging reading everyone's posts here, although we are all unfortunate enough to be experiencing this discomfort, I am now more aware that many woman suffer from vulval pain and are going through similar difficulties. It makes me feel less alone and I sympathize with all women it affects.
I am 22 years old and have been suffering with pain during intercourse from the age of 16. I have never been able to achieve full penetrative sex as it has always been much too painful, even just to touch. For years I thought it was psychological and decided the pain I experienced was occurring because my muscles were tensing every time any form of penetration would occur, and most of the time I could not achieve this.
I have visited doctors on many occasions, just to be told that I should keep pursuing, which made me feel as though I had wasted their time. Relationships have fallen apart because of the matter - it is very disheartening and often used to make me feel useless and very insecure; I would become extremely low for weeks at a time. Last year I was in a steady relationship and found it difficult to have full penetrative sex. My partner was very understanding and encouraged me to see a specialist for more advice. I was referred to a Gynaecologist who examined me by lightly touching the vestibule area with a cotton wool bud. It was sore and gave me a burning sensation each time the cotton wool bud was applied.
I was told straight away that I had Vestibulodynia, and was given advice and a few treatments. I was given Oilatum gel to cleanse, and Epiderm to strengthen the skin. The Epiderm did not agree with me, so I was told to use E45 cream. These are basically to help care for the skin, as the skin is usually very weak and red. I was also given Lidocaine to numb the area, and to use it half an hour before intercourse. I tried with my partner, however I still experienced a vast amount of pain. I have also been trying Dilators and am able to fully insert the second size, with a tolerable amount of pain, but I have to use KY jelly to ease insertion. I have to be careful what I use as I am prone to getting thrush, but I have found these treatments have given me no problems thus far. My doctor also advised me to apply a small amount of Lidocaine to the area every night, even if I am not intending to use the dilators.
Anyway that is my story. I wish all of you well and hope that some of this information has helped too, as by reading the posts above I have learned some useful advice and for that I am very grateful.
April 11, 2010 - 12:10pmThis Comment
I am at the end of my rope - I have been dealing with painful sex and redness for almost 2 years - and no doctor can truely figure out what is wrong. I have been tested for everything under the sun - all negative. My symptoms started after taking Yaz birth conrol pill - about 3 months in I noticed a severe lack in libido and pain during intercourse. It snowballed from there. My OBGYN at the time said my issues couldnt have been related to the pill and gave me steroid creams...which I know now made it all worse. To make a long story short, I stopped taking yaz after 8 months of being on it and found a new doctor. I am totally convinced all of my problems were related to that pill! She believed me and told me I was not the first to present recently with similar symptoms. I actually had a "menopausal looking vagina" per my new doctor when i first saw her. I have tried hormone creams (lidocaine/estrogen) and physical therapy - the PT helped tremdously and so did the creams - and although i have improved from where i was, im still struggling with redness and painful sex and abnormal periods. I think I may try Goldsein to see if he has anything else to offer me. I am only 27 and recently married and this has consumed my once normal life for so long. My question to all of you ladies that may have been through this: 1) was anyone else on Yaz when they began to experience symptoms? and 2) has anyone gotten better just using hormone creams? I wonder if I will require surgery...
I am sick of this ruining my life :( I am getting depressed
February 26, 2010 - 6:47pmThis Comment
In response to the poster: Anonymous February 26, 2010 - 6:47pm
Yes! I was on Yaz when I first started having my symptoms.
I was diagnosed with vestibular vulvodynia earlier this year after 3 years of awkward conversations with various general practitioners and "helpful" suggestions such as drinking a glass of wine before intercouse. I was finally referred to a gynecologist who diagnosed me after a q-tip test, and I have been using lidocane (5%) nightly as well as desipramine. It has helped a little, but the thought of having sex is still the equivalent of being made to walk the plank (Disney's Peter Pan movie-sorry, I teach preschool!) I was actually online searching for the least painful position for people with vulvodynia so I could report back to my doctor as I am about to have a follow up appointment. Thank goodness I stumbled upon this site! It has been so helpful- no one has ever mentioned that this could have been caused by birth control- and the only 3 pills I have been on- Yasmin, Yaz, and Sprintec (generic for ortho tricyclen low) were all mentioned in one of Dr. Goldstein's papers that I read off of the website that was posted on here. Thinking back, when I first mentioned my problems to my general practitioner she said it was like I was describing the symptoms of menopause, but that I couldn't be menopausal because I was 23 (i'm 26 now) and because I still have normal periods. At my gynecologist's suggestion, I read most of the Vulvodynia Survival Guide and purchased the V book, but this information was not presented. Should I ask my doctor about the link between birth control and vulvodynia or is this not widely accepted? Also, if I go off birth control can I effectively protect against pregnancy? (Although I'm beginning to be more worried about if I will ever be able to have normal intercourse again and conceive when I get married.) I cannot have my boyfriend use condoms as they seem to take away any sort of lubrication that I produce. I would love to see Dr. Goldstein, but I just don't know if that is possible. I live in Colorado and I am pretty worried about the cost. Being a public school teacher, the prices people posted are close to half my monthly salary! Does anyone have experience with him and increasing their libido? I used to have a normal, enjoyable sex life with my boyfriend (we've been together 5 years), but I can barely recall what that was like.
May 7, 2010 - 2:44pmThis Comment