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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I am a 22 year old who has suffered from Vestibulodynia for about 2 years. It was about 2 years ago that I noticed some pain during intercourse with my boyfriend of 6 years. I just thought that I moved wrong or it was just that time that I would feel pain, but as the time continued and the more that we had intercourse, the more I noticed pain. It was odd to me because we had had intercourse for 3 years prior to this and I never had pain before. I also noticed that it became very painful to insert a tampon. So I began to refrain from sex and started to not use tampons. About a year ago I went into the gyno for my check up and was in extreme pain during my examination. I asked my doctor and she told me that I was just sensitive down there and that I would be like this for the rest of my life. She suggested that I do some breating exercises before intercourse and try to relax because there was really nothing else that I could do. I felt hopeless, and so alone. Not only was I told that I had a damaged vagina, but I was told that I would never enjoy intercourse for the rest of my life. Frustrated, I seeked an opinon of another doctor. After being refered to a pelvic pain specialist from my new gyno, I finally recieved the news I had been waiting for. I did not have a damaged vagina and there was hope for me. After a typical q-tip test, my doctor told me that I had Vestibulodynia and also Pelvic Floor Dysfunction (my muscles were very tight). This was great to finally have a name for what was wrong with me, but also disappointing at the same time to find out there was no known cause or cure. I was then told that my testosterone level was very low, so I was given a compound cream to use in the mornings to help with this. My doctor then proceeded to tell me that they have no idea what it can be caused by, but they are thinking it can be caused by birth control. My eyes began to water and I was instantly upset. I have been on birth contorl for about 6 years now, and I believe it is the route of all of my problems. Right before my pain had started during inercourse, I was diagnosed with a pituitary tumor, my body was producing too much prolactin. I am currently on cabergoline to treat this and my hormoe level of prolactin has since then gone down. But to find out that birth control probably cause my Vestibulodynia too was heart wrenching. I believe without a doubt that birth control is the reason I am having so much pain, especially since I never had pain previously in my life. I am currently going to Physical Therapy for my Pelvic Floor Dysfunction and I believe that it is really helping, I feel more incontrol of my muscles and feel that they are opening up slowly but surely. For the Vestibulodynia, I feel at a lose. My doctor told me my options, testosterone cream, antidepresent, injections of a steriod and lidocaine, and then surgery. I am currently using a testosterone cream in the morning and lidocain at night. I am still on birth control so I feel that the testosterone cream is doing nothing. I plan to get off of the pill in 4 weeks when my pack is finished. I also have an appointment to meet with an Accupunturist next month and am anxious to see what techniques she can do to help my body get back to normal. I am thrilled that I found this blog and found other people out there like me!! I have felt so alone for the past 2 years. It has been a struggle, especially considering I have been a relationship for 6 years, boy has that been a struggle. It is hard to explain to him what I feel and what I am going through. It is not that I do not want to be intimate or that I have no desire to be that close with him, it is simply that I have hardly no sex drive at all and that intercourse is extremly painful. Who wants to do something that causes them pain? I am hoping that by getting off birth control I will get some sort of sex drive back and also be able to tolerate pain! Any suggestions???
December 22, 2011 - 8:03amThis Comment
Dear Anonymous,
December 22, 2011 - 9:05pmI can totally relate to your post. My story is posted right above yours. I HIGHLY recommend reading "When Sex Hurts" by Andrew Goldstein and Irwin Goldstein. I waited for answers for 7.5 years, I stopped the pill after reading all of the posts on this site. I have to be honest and say I feel about 50% better off the pill. I think my provoked vestibulodynia is caused from 1) the pill and 2) recurrent yeast infections =( I had intercourse last night with my husband and it still hurt being off the pill. I have tried SO many treatments and I really want to avoid surgery. I tried the lidocaine shots and honestly, I htink it made me worse. You can call Dr Irwin Goldsteins office and he will do a free phone consult. I tried shots, antidepressent pills, gabapinten cream, lidocain on a cotton swab, ect. I still use lidocaine after sex because I burn so bad. Here is Irwin Goldstein's website : http://www.sandiegosexualmedicine.com/
Another website I HIGHLY recommend is http://cvvd.org/
Good luck to you. I agree..the first step is stopping the pill. Then, contact these doctors if you can and read the book. I read it in literally 2 hours. I sat and cried when I read it. It has all the answers.
Dawn
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Thank you so much for your story and post. I am 34 and have been suffering from Vulvodynia the past 7 years. I went to about 10 doctors first before receiving a correct diagnosis. I reviewed the cvvvd.org website and I sat in tears as I read. Finally, there are answers and I don't feel so "crazy" as if my symptoms and pain were all in my head. Does anyone have experience with recurrent yeast infections? What did you all do to stop the yeast from growing? I will go to an allergist and see if I have Candida allergy. If so, apparently there is a vaccine I can get. I was on suppressive therapy for yeast for 1 months to fight my yeast. I took a Diflucan everyday for one month. As for my Vulvodynia (I actually have vulvar vestibulitis), I have tried everything from lidocaine shots, to antidepressents meds, borax capsules, steroid creams, lidocaine gel. The list goes on an on. My former OB (who specializes in Vulvar pain) tells me the next thing would be surgery. I live in CA and would love to see Dr. Goldstein in Washington, DC. And, while reviewing this site, I read there were a few that went to see Dr. Irwin Goldstein in San Diego, CA. Has anyone had surgery from this doctor? How did it turn out? Are you pain free? I stopped the birth control pill as well. I have a 14 months old son and while off the pill, I noticed my pain level decreased. My new OB (my former OB moved) said there was not a connection, but I knew there was...so this is how I came across this site. I wish I would have known 7 years ago that the pill would be the cause of my pain! I am forever grateful for all of you who wrote in. Without this site I would not have decided to move forward in getting treatment.
November 23, 2011 - 12:51pmThis Comment
I was diagnosed with vestibuldynia when I was 14 years old, I'm now 28. After exhausting all available treatment options (bio-feedback, antidepressants, creams) I caved and had surgery at age 18. Best thing I've ever done, my pain is minimal!!! I went from 3 years of constant pain, to 10 years pain free.
My hormone levels have begun to fluctuate lately, since I've been off the pill the last year, and now my pain is back full force. I've noticed that my symptoms start with a yeast infection that evolves into constant pain with no relief. Keeping your ph levels balanced in your body is crucial to managing the pain. When I stop taking care of me, my friend downstairs let's me know real quick. Don't give up, I went 10 years with no pain & now my episodes are farther apart and shorter (2-3 months).
April 4, 2011 - 6:05pmThis Comment
Hi,Who did your surgery? I may have to have it too and want someone who has done thousands....
November 16, 2015 - 1:28amThis Comment
Hello, I recently saw a vulvodynia expert in Washington, D.C. He diagnosed me and here is some information I have to add.
There are a supposed 12 reasons/cures for vestibulodynia pain, but most of them have to do with infections or other curable diseases. The last two are: 1) If it was caused by birth control, you can stop the birth control and take a estrogen/testosterone compound. 2) If you were born with it, you can either take antidepressants/seizure medicine for the rest of your life, use a PAINFUL chili-cream every night to help desensitize your vestibule (only reduces pain a little and need to keep up with it), or you can get surgery.
If you are like me and were born with this problem, it really seems like surgery is the only option. For those of you that have always had problems using tampons, I ask you, does it hurt or feel uncomfortable to place your finger into your belly button? The skin in your belly button is found in one other spot and I'm sure you can guess where that is - the vestibule.
Here are some statistics I got on the surgery.
March 26, 2011 - 11:21am- It is expensive. Insurance will cover hospital costs, but the procedure itself is out of network and requires a LOT of fighting to even get some money back. We were estimated costs at around $8,000
- It has a long and painful recovery time. Two weeks bedrest, and for six weeks afterwards you will barely even be able to walk (and walk like a pencil).
- After those six weeks you need to use dilators, slowly working up in size to stretch out your vagina or you will be right back where you started... Painful and impossible sex.
- The surgery covers up a gland that produces lubricant, so you will have 25% less lubrication than normal
- A study was done on 213 female patients that got the surgery done... 58% could have sex completely normal and pain free (provided they used lubricant), 30% could have sex with only moderate pain, and 12% still had severe pain (but many of these people admitted they did not use the dilators).
- After having a baby, 90% of patients could have sex completely pain free (because it stretched the vagina)
This Comment
For anyone coming across this now, I wanted to respond to this post about the surgery. I'm now 3 weeks post-op and didn't experience what the above says. It's expensive but it depends on where your doctor is located and what hospital you have the surgery. Mine was in network and covered.
I found that the above are the very few horror stories I've come across also. However, a majority of experiences I've found matched my own:
Recovery is long, but not all that painful. I was up walking around the same day. It's painful, but not unbearable as long as you obey doctor's orders and take your pain meds. I've had to prop myself up but I was not in bed for more than the first 2 days while the anesthesia wore off. I was able to recline on the couch after that. After about a week I could sit with a donut and was walking around fine. The first week it hurts a bit to walk, but like with any surgery, you need to take it easy.
The dilators are necessary I've heard also. But totally worth it. I've been through it before as a possible solution. It does make a big difference and if a month or so of physical therapy is what it takes to rid yourself of the pain, it's worth it.
The surgery no longer removes the lubrication gland so that is no longer an issue. Most doctors now have a 90%+ success rate. I'm still in recovery and 3 weeks post-op I still can't sit directly, but recovery has been a breeze compared to what I expected after reading horror stories like the one above that get spread. It's not that bad.
Already I have no burning with urination (despite having stitches and healing down there) and no flare up before my period like usual. So far, so good and I'd say the surgery is looking like it's completely worth it!
March 12, 2013 - 6:24pmThis Comment
Okay, this being the same anon that got their mirena removed and has 'had' this since 15 I want everyone reading along to know I now take Lyrica and am as close to normal as I dreamed of being. If you are at your wit's end, please suggest that to your doctor. It has really done wonders for me. I still have the occasional pain, and tampons aren't exactly fun. But before Lyrica I never would have dreamed of being able to use a tampon!
February 20, 2011 - 9:20pmThis Comment
Thank you for updating us, and your information will definitely help other women.
I'm happy that Lyrica is helping, and we hope to hear back from you again!
February 20, 2011 - 10:06pmThis Comment
I'm bothered by the fact that you block out the doctor's name I wrote in and it is very hard to figure out where the new comments are but thanks for the website.
October 13, 2010 - 11:49amThis Comment