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).
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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
I've had vestibulitis for 21 years and just got diagnosed a couple of weeks ago by Dr (name removed )in San Diego whom I was referred to by Dr (name removed) . He prescribed a heavy duty cocktail of various hormones that I am afraid to use. He said if that didn't work perhap a vestibulectomy. How is it that no one knows what the hell this is and no one talks about it!
November 17, 2009 - 1:23pm(Physician name removed by EmpowHER Moderator)
This Comment
Anon,
You can tell by the frustration of the women on this thread that you are not alone.
How old are you, Anon?
Can you tell us the combination of hormones that have been recommended for you? And for how long your doctor wants you to take them?
November 19, 2009 - 8:09amThis Comment
Hi i am 20 years old and have been suffering vestibuldynia since i was 13 years old! i went to the doctors for years and they told me it was thrsuh! however they told me to go to a specialist gyneacologist! i have been seeing a professor who specalises his vulva disorders and i still have found no cure. I have had 4 operations to make my vagina bigger but also had steroidsand botox injected into the walls of the vagina to control the muscles however that hasnt worked. I have been using steroid creams such as trimovate, dermovate, betnovate and only some of those help to calm my soreness down. I can not have sex at all and i have been with my boyfriend for 3 years. he is very understanding as this is putting a strain on our relationship. i considered sexual counselling but my problem is not in the mind i have a physical problem that hasnt been cured. this is definately putting a downer on my life. i hve just been to see the professor and he has told me to not use and creams or anything and i am going to have patch tests to see if i can find where i might be having a reaction. i have aslso been told that my problem lies within my body and that it is my immune system attacking anything that goes near my vestibule so my problem will never ever be cured all the professor wants to do is try and make my life as easy as possible and as bearable. i wont ever be able to have a healthy sex life as my body wil attack so it looks like i will be on creams and tablets for the rest of my life and i am only 20 years old :-(! i have tried pretty much everyting this professor has to offer and he is the top man pretty much in the united kingdom, he has published over 130 papers and wrote text books and everything and even he is mindboggled!
September 3, 2009 - 10:26amThis Comment
I've posted a couple of times already and understand everyone's frustration because I have felt/feel it. So I have now been taking the naltrexone for almost 2 months ( I wrote in August). I actually have been feeling some improvement. I've actually felt okay enough to have sex multiple times since I have begun taking it. Which is a far cry from where I was at and the only thing that has helped my pain in the last five years. If you read my earlier post you will be able to read that. About 3/4 of the times I try I have to stop because it's too painful but I am thankful for the 1/4 of the time when I feel normal. I am still very cautious and nervous about the whole thing. I am still going to pelvic floor therapy which I think helps with relaxing.
To the person who posted the post right before this one. Keep your mind open. I have had multiple specialist (the "best") tell me all different kinds of conflicting things that they were confident in. Such as it was in my head, it was uncontrollable nerve firing, I have an abnormal concentration of nerves, I need surgery, I don't need surgery etc etc. I have had many doctor's who have run out of ideas in front of me and understand how discouraging it can be. I personally think you should still consider going to counseling, not because I believe this is in your head(obviously I don't) but because having someone to talk to about your feelings and frustrations is important part of coping with stress and painful emotions.
I wish you all the best and hope you feel better
September 21, 2009 - 11:02pmThis Comment
From burning hell!
June 25, 2010 - 6:51amTo Mrs Anonymous......I can't beleive i'm reading that you are taking Naltrexone!!! This is fab news!!
I Suffer and have done for many years with chronic Interstitial Cystits (IC)!! And has and had flares of discomfort and burning down below on and of for many years!!
I constantly feel like i have a terrible case of thrush when on my period cycle and after.
However just until recently my down below parts have been in turmoil!! The pain is horrific!! I feel like acid has been poured over me and at times it can be all around my bits down below or just in one area, but can move up to my bum! However the pain got so bad last night i really took a bad wobbley!! And got myself into a right old mess! When i wee it's agony (burns like hell!)
Anyway i'll get to the point, My fantastic CPN has being doing some reseach on Naltrexsone which has been know to be helpful for IC and have tried before however i was on i think it was 5mg tabs at night and i suffered badly with bad headaches and muscle pains and insomnia. so he took me off it.
So i'm now taking dermovate (kind of helps, kind of not!) used three tubes so far! lol Prednisole 5mg 2 daily (helps) I'm now on Trimethoprim because they also think i have a uti. Diazipam for the tense muscles and bladder pain and paracetomls with tramadol (excellent for pain!!) but as i was saying the pain was so intense last night i really started to think in a bad way! (ending it!) which is awful!! So i started on pregabalin and it's kind of helped. However it's just slightly touching the pain! I still can't walk or sit right. And it causing me to wake up at nights now. My ice packs are my best friends at the moment!! lol
So i really want to give the Nalterxone another go as i have read such fantastic papers on it....so can i ask what amount you are on and how often and at what time of the day are you taking it??
Please reply.
Hugs
Erica (at her wits end)
I'm 31 and have two beautiful boys, that at the moment has a rather crappy usless mum!
Thanks
This Comment
I just got diagnosed with provoked vestibulodynia. My problem is that its not caused by birth control, irritation, or anything else. I was actually born this way. I have too many nerve cells around the vestibule. My doctor prescribed Disepramine and Lidocaine ointment, then told me it would be for life. I'm considering surgery. I don't want the rest of my life to be ruined.
August 29, 2009 - 5:56pmThis Comment
Hi, I was diagnosed with the same thing, and Dr. (name removed) told me that surgery would probably be the only effective treatment for me since i was most likely born with it. I also am considering surgery. Please let me know if you find anything that works, as I'm afraid to go through the pain.
January 8, 2010 - 12:05am(Physician name removed by EmpowHER Moderator)
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hi ladies,
April 26, 2011 - 7:14pmi am 23 years old and i have been struggling with vulvadynia for 5 years. i have a vestibulectomy scheduled in 3 weeks. i have tried everything that you ladies have mentioned; steroid cream, estrogen, pills, physical therapy. i even went as far as to try acupuncture! none of these treatments have given me any relief! i am from the east coast and i am seeing dr. conway from merrimack new hampshire. he will be doing my surgery. he sees patients from all over the world and says that i am a very good candidate for the surgery! he has been doing the surgery for over 10 years and has told me so amazing sucess stories. he also told me that there is a 90-96% sucess rate! i am terrified but "what the hell!" im 23 and have not been able to have enjoyable sex in 5 years! i am depressed and i am willing to take the chance with this surgery! i would love to hear from someone that has had or will be having the surgery. i will also post after i have the surgery and let all of you wonderful strong girls know how everything is going!
This Comment
Adotfritz, do you have any more updates on your success using the cream? Also, did Dr. (name removed) mention tthat you may have an overabundance of nerves as a result of the lack of testosterone/estrogen in your vestibule? Just curious if low hormones can cause proliferation of nerves?
August 12, 2009 - 7:40pm(Physician name removed by EmpowHER Moderator)
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I am actually getting the surgery the 3rd week in march...i will update from there. Although the testosterone cream helped a little, my final diagnosis was a proliferation of nerves. All the tissue needs to be removed now.
January 12, 2010 - 12:31pmThis Comment