Hello, There

I've recently come across a bunch of blogs about women dealing with vulvodynia.  Since my diagnosis, I've been feeling...not exactly lonely, just isolated.  Full of thoughts and feelings, with no one to spill them to (no one who would understand, anyway).  So I've decided to give this a try.  I'll throw my own voice into the cacophonous mess of weblogs, and see if anyone hears it.

First things first, I guess I should start with some basic info about me and my condition:

• I'm 19 years old, in a steady relationship of nearly a year.
• I live in California, around the Bay Area
  
• I've been experiencing vulvar pain for around 7 months now, but was only diagnosed with vulvodynia a few weeks ago.
• My symptoms are limited to vulvar pain with intercourse; luckily, I don't feel pain from simple touch or prolonged sitting.
• My doctor has me using Clobetasol Proprionate steroidal ointment three times a week.
• Self-diagnosis using the internet has led me to believe I have Vulvar Vestibulitis Syndrome.   

 So how am I doing?  Not well.  Terribly.  I'm scared.  All the research I've done online so far, reading up on treatments and hearing testimonials from other VVD sufferers, has not yielded a positive outlook.  It appears I'm in for months, if not years, of OBGYN appointments, physiotherapy, and a myriad of treatments, all working towards a small chance that someday I could be 90% pain-free.

I feel so helpless. I've been perfectly healthy all my life, now suddenly I have a disorder that has no cure.  A disorder that many doctors have never heard of.  A disorder that was featured on a 20/20 segment entitled "Medical Mysteries." I'm using a treatment that explicitly states "Do not use intravaginally. Do not use for more than 2 weeks,"  yet I'm doing both.

The thought that I may never again have a normal, healthy sex life makes me want to cry.  I'm only 19 years old and in college,  I should be having sex all the damn time.  But instead, I haven't had a satisfying sexual encounter in months.  I miss being intimate with my boyfriend, B.  I feel guilty, because I'm his first sexual partner but we only had a few months together before this got in the way.  I'm envious of couples I see on TV who can have sex any time, anywhere.  I am amazingly frustrated, and aware that it could be years before this goes away.  If it ever does.

I need help.