How it all started

I suppose I should tell you guys my back story regarding VVS. It's probably going to be a bit long so bear with me. If you don't know what vulvar vestibulitis (or vestibulodynia) is, its a subset of vulvodynia (vaginal pain) that generally occurs upon contact with the opening of the vagina (the vestibule). That means I luckily only have pain when something touches that area (as opposed to women who have pain all the time, I can't imagine...). Unfortunately the purpose of having a vagina often revolves around it being touched or shall we say stimulated. ::Sigh::
I was diagnosed 4 years ago, but I'm 99.9% sure that I've always had it looking back on things. Long before being diagnosed I'd notice that sitting in ways that compressed my lady bits were fairly uncomfortable, my period was quite irritating to that area (not cramps, but burning pain in the vestibule), and tampons weren't much fun either. I asked a gynecologist about it once, but she just recommended using organic or unscented pads or tampons. Not much help.
Later when that area started to get, um, more attention we'll say, it was still uncomfortable, but I thought maybe I just need to get used to the "attention" because fooling around is supposed to feel good right? Why wouldn't it...eventually? When I actually started having sex I was on an antidepressant that pretty much killed all of my sexual sensations. After going off of them I noticed sex didn't feel good the way I had heard it was supposed to, in fact it down right hurt! Clearly something was wrong and so I embarked on the journey I'm sure most of you have had of trying to figure out what the hell was wrong with me.
I started at my college's health center where I was first diagnosed with a yeast infection and bacterial vaginosis. Sounded simple enough, take some pills, use some cream and it will all be taken care of, right? Wrong! My health center wasn't exactly equipped to figure this kind of thing out so when I got home for the summer I went to a local gynecologist who through the super scientific test of poking me with a Q-tip in various areas downtown and asking if it hurt diagnosed me with vulvodynia.
Wait? Vulvo-whatia? My vagina's depressed? I might have to keep a vagina diary? That's right I had a condition I had first heard about on "Sex and the City". Who gets a condition they heard about on a TV show!? Well at least I had an answer and Charlotte only talked about it for, what, five minutes (mildest case ever!) so I should be fine. Wrong again. Since then I've tried, lidocane gel, lidocane and neurontin cream, testosterone cream, 2 types of estrogen cream, neurontin, cymbalta, elavil, desipramine, physical therapy, going off birth control pills, and probably other things I'm forgetting with only mild success. I've been to about 5 doctors and I'm not sure what to try next.
Right now I'm using Estrace and I'm supposed to be taking baking soda baths every night, and doing a low oxalate diet. I'm sure I'll complain about the diet later, needless to say its not very fun to stick to (no coffee or chocolate? how do you live?). I recently had a very good nurse practitioner who actually had VVS too, but just before my second appointment she abruptly quit gynecology and moved to end of life care or something. My treatments are basically on hold now until I move for grad school. I may try neurontin again as it did seem to work ok, but I'm still looking for other options.
Right now, I basically can't have sex because it hurts too much, which sucks as an early 20-something in a relationship (as it would for anyone). I'm hoping something will eventually work to at least control this condition, hopefully not surgery, but who knows. I'm always happy to take advice from others who have had some success. So that's my VVS story in a nutshell, what are your stories?