Corrie,
You aren't alone. I'm a male IC patient. Had my cysto/hydro in August of 2001, and I know EXACTLY what you're going through.
Please PM me and I can give you quite a bit of information about where to go for support and assistance!!
There is a LOT of ground being broken in research, and I feel there may be a solid workaround or cure within 3 years.
I STRONGLY disagree, as do many others, that the disease is autoimmune. I believe it's all a manifestation of Pelvic Floor Dysfunction, and am doing as much research as I can to further my hypothesis.

Please PM me and I'll help you out!
A couple sites for you for right now:
http://www.ic-network.com (check out the message boards)
http://www.ichelp.com (the original and IMO best organization to contact for help or ideas)

Hopefully talk to you soon..... You're NOT alone....
J