Hey all,
I've recently found some light at the end of a very long tunnel and just wanted to give you all some hope.
My problems with Vulvar Vestibulitis started when I was 19, just a few months after I moved in with my boyfriend and about 6 months after I started taking birth control. At first the pain was tolerable and I tried to tough through sex, but that quickly changed. After several years of useless doctor visits in the US (where I was told everything from "you're too small", "drink some wine first", "you have HPV" [I don't], to "it'll just be like this till you have a baby"), I moved to Switzerland where a doctor, troubled by my symptoms finally did some research on her own and figured out I had VVS. For about 2 years after that, I moved around both Switzerland and the US, which meant I was going from doctor to doctor (I saw among others, Dr. Gordon Davis and Dr. Susan Kellog-Spadt who were known for their expertise), and was put on all of the following treatments: estrogen, some cream I forget that has some component of chile peppers in it, low oxalate diet, betadine treatment, lidocaine, and cortisone shots. The shots and the creams seemed to help a bit, but it never really went all the way away. I moved to NYC, saw another doctor who said since the area had been contained to a small spot, he was just going to remove that area. I had surgery in the winter of 2004 and thought I was cured. Unfortunately, it came back in the spring and I finally went and visited another specialist, this one Dr. Andrew Goldstein in NYC. Dr. Goldstein decided that since I had been on so many treatments, there were really only a few things left. I could have surgery again (apparently the doctor who did the first one botched it. He wasn't a specialist and so actually succeeded in doing more harm than good since he narrowed the opening to my vagina, which was already small) or I could go back on estrogen, since I had still been taking birth control the previous times I was on estrogen therapy. He ran some tests, found out my estrogen level was ridiculously low, and so I went back to applying the creams. This one also had a low dose of testosterone in it, since I was low in that way too. Well 6 months later, I went back to him and great news. The pain is gone! There is still a tiny tiny spot that is agitated, but it's really just more of an aggravation than pain. Nothing I can't handle. I'm still applying estrogen in hopes that that will go away. If not, he says he can remove that easily without a full surgery.
So now, all that's left for me is to dilate and fix the problems from my previous surgery. Dr. Goldstein thought it would take me about 3-4 months to dilate, but I don't know if it's because I'm young or what, but it's been a little over a month and I'm already on the largest dilator size. I'm so excited to try sex again, I don't know what to do.
In the 5 and 1/2 years that I've had VVS, my relationship with my partner really suffered. He resented the fact that I couldn't have sex for a significant period of that time and said some things that I was never able to forgive him for. Suffice it to say, I've found that one of my big barriers to wanting to have sex at all was him. Well, I separated from him this summer (for many reasons) and now my sex drive is back and healthy. I've been dating a man for about a month and I told him that although I wanted to, I wouldn't be able to have sex with him for awhile because of the previous surgery and the need to dilate. He couldn't have been kinder with his response.
So now, I'm preparing for what I hope will be a happy, healthy, fully functional life. I've just turned 25 and the idea of actually having a regular sex life for once has me over the moon.
I just want to let you ladies know that you are not alone, and that even when it seems like all the treatments are just more torture, good things can happen.
Good luck to you all!
