After quite a few years of terrible urinary pain and pain during sex, my gynecologist suggested that I may have vulvodynia (which LJ is saying is not a real word...?) instead of the interstitial cystitis that my urologist suggested. I just wanted to ask some people with experience with vulvodynia for some advice. After reading a whole lot of information, including the wonderful resources on VP, I'm wondering if my case is truly vulvodynia. I understand that not very much is known about how the pain is manifested and that there is a lot of variation, however it seems like most people who have been diagnosed with vulvodynia have constant debilitating pain.
My pain is not constant. I can wear all kinds of pants and underwear, I can usually insert tampons with no pain... in fact, my pain doesn't seem to be concentrated in the vulva but rather solely at my vaginal opening. Pelvic exams are painful for me, but not like jump off the table pain. The worst pain is during sex. Sex almost always comes with pain of some kind. My boyfriend, the wonderful understanding person that he is, is very gentle with me and stops when I say stop! I have been having sex with him for almost four years and sex has not gotten easier. There are times when the burning gets so bad that we can't continue, but usually the pain goes down to a manageable level where the pleasure can be felt over it. The really chronic problem is the urinary issue. I used to get constant UTIs but I figured out how to manage those. Now it's just chronic urinary pain which gets worse with stimulation by sex. I read that sometimes vulvodynia can manifest itself higher around the clitoris/urethra area.
I'm just feeling very overwhelmed and confused. I was so excited that I had a name for what might have been going on and how to treat it. But, after doing the research, it sounds like the actual condition is much worse than what I've been experiencing. I am in a very real amount of pain, though, and I'm just concerned that I'm going to slip between the cracks of this disorder, or whatever it is. I'm just so tired of ending sex with the person I love in tears. I don't think it's yeast... I've had yeast problems before but my doctor said that my vagina didn't look yeasty the last time I had an exam. For those of you with similar experiences, do you have any idea if what I'm describing sounds like a realistic manifestation of vulvodynia? Is is possible to have MILD vulvodynia? I plan on trying to get an appointment with a pelvic floor specialist soon, but I just wanted some comfort in the meanwhile. Thanks guys.