woman9469
04-19-2008, 11:37 PM
Hi my name is Denise and I have IC. I had it for about 3 years and was diagnosed this past July finally! The docs in my area are old/uninformed and don't know much about IC, so I took it upon myself to find a UroGyn doc. It was the best move ever! Since they deal with the womanly probs too they help so much! Especially when my flares come at "that time". I want to share this short story to give some people some hope. My doc told me in 35 years this was the worst case of IC he'd ever seen. I began DMSO cocktail instillations upon diagnosis once a week with no results and living with that terrible garlic smell! Then I learned to self cath and did twice a week instills with better results. My husband and I could NOT handle the smell of the Rimso so it was replaced with heparin instills 5 days a wk. and the other two days are heparin/kenalog/sensorcaine. Yes 7 instills a week. But, the best parts is I had an Inter-stim put in my left buttock to releive the urge to go to the bathroom. It was the best thing I had EVER done. Two days ago I had a Spinal Cord Stimulator put in on my right buttock for the pain and I never felt better (accept for the healing surgery incisions). I don't fell much pain and I go to the bathroom a mere 6 times a day instead of 50-60 times a day. I would liike to know if anyone has tried Cystistat? I have a script and can get it direct from the Pharm. Co. but it is expensive! They have a deal now if you buy two vials, you get 2 free. Definitely the cheapest place to order from I think?? Any imput from anyone on that? I hate to spend the money but will do anything that might help me! Oh, also, does anyone know about the Elmiron capsules being put in the instills (just the powder I know). How is that working? Thanks........