Interstitial Cystitis?

Scarlette · Dec 15, 2004

What info can you give me? Experiences? Best treatments, meds, etc?
Thanks

My best friend was diagnosed with it about 2 months ago. I do know that she can't eat anything spicy, no carbonated beverages, no beer, no caffeine....no nothing. She's pretty much living on water, certain vegetables, and grilled cheeses sandwiches.

I do know that she's on Elmiron and her doctor told her that it could take up to 6 months to start working. She's been on it for about 2 months now and has a little bit of relief. She goes to the bathroom every 15 minutes and says that the condition is very painful....like constantly being kicked in the crotch! :uhoh21:

There is a type of treatment called a bladder wash where they can infuse the bladder with meds. From my understanding you have to have it done a couple times per week, or you can learn to cath yourself and do it at home. My friend didn't go that route because she has no insurance and it can be expensive.

Sorry I'm not more helpful, just letting you know what my friend is experiencing.

CHATSDALE · Dec 15, 2004

i had a really bad uti once and the md said that is how IC patients feel all the time...that has to be a nightmare

ER-RN2 · Dec 15, 2004

I was diagnosed with IC in April-it took 8 months and 3 doctors. I felt like I had an UTI all of the time. Once I was diagnosed, I took oral meds, cath myself, and did the bladder instillations. I tried the diet....nothing really helps. But I finally got interstim placement-It has been wonderful. I still have pain, etc at times but nothing like it was. Go to the IC Network website for some good information. Good luck to you if you have this-It is very hard to diagnose, treat, and learn to live with the chronic illness.