Hi Acheybody,
I was diagnosed with both Generalized Vulvodynia and Vulvar vestibulitis last year. The beginning of this year I went through I series of injections (unpleasant but helped a great deal) and I use Clobetasol periodically and lidocaine ointment for pain. Whenever possible I go without underwear and wear loose clothing around that area. There are some great sites and an especially wonderful one for Vulvar Vestibulitis in particular that my friend has created (which is more specifically around the glands, but a lot of the self help is the same) and I would love to give the site to you if you send me a message.
It's frustrating, painful and hard for partners to understand, but there is alot you can do to make things easier on yourself - a special cushion for example - physical therapy with biofeedback to relax pelvic floor muscles, plain soaps and cotton undies - no pantyhose. For me the injections, clobetasol and lidocaine did wonders. Also low dose valium really helps relax my pelvic floor muscles, but each person finds things that work for them. If you'd ever like to ask any questions or talk, feel free to email me. My urologists agreed I may have it when I brought it up to them and was officially diagnosed immediately by my gyno once I made the appointment about it.
If you're having a rough time with doctors, you have to keep fighting and trying - you know your body better than they do :)
Also, knowledge is power! goodluck