Interstitial Cystitis Support Group

the diet helps me alot, i can tell a difference when i slip up and drink anything w/caffiene or drink anything carbonated or anything acidic...everyone is different and it is kind of a trial and error process w/diet and meds. the only med for ic that helps to repair the bladder wall is elmiron, and it does have some bad side effects for most people. it was so expensive even w/my insurance i opted for the hydroxyzine instead. u are going to have flares off and on, i dont know if it gets worse with age or we just have more things going on besides ic that seem to aggravate it!!! it seems like most people that have ic seem to have another autoimmune disease also and fibro seems to be the most popular, lol...why i dont know.

the best advise i can give u is to read, read, read...and ask questions! we have a great group and some of them has had ic for yrs...and would be more than happy to share w/u, so ask away!!!!!! i am sorry u may have ic but i am glad to have u here!

Post edited by: blondee8257, at: 05/20/2010 01:03 PM

Fortunately, I was diagnosed fairly quickly - about 2-3 months. My GYN told me sometimes it takes several years. I had a MAJOR flare last summer and didn't have a clue what IC was either. My family physician sent me to a urologist, who turned out to be IC

NON-friendly. Nothing he tried helped me, and he kept telling me everything looked fine. Then why all the pain??

I later went to my GYN (for annual visit) and discussed my problems with him. That's where I should have gone in the first place, but didn't know it. He referred me to a Nurse Practitioner in his office that is my hero. She CARES, and how many doctors or NP do you find you really care??

Also, fortunately, I responded well to bladder instillations (a treatment where meds are put into your bladder with a catheter, and you hold them for a short period of time). After a few months of the treatments, I now only require them when I have a flare. The NP put me on Clariton and Prelief for my IC. Prelief is a supplement (found in the anti-acid section of the pharmacy) that removes most of the acid from foods. I just take 2-3 with my meals/snacks and don't have to watch my diet so closely. I know certain foods can set me off, as well as, stress.

My NP also prescribed UTA and Macrobid for me to keep on hand just in case my bladder flares. So far that is working for me!!

I also think a GYN/URO would be a good choice, but again make sure they are IC-friendly. It would be a good idea to keep a diary of what you eat and see if you have more problems after eating a certain food. I don't know about IC getting worse with age, but I think it may just flare off and on through one's life. Just my opinion.

I feel as though I'm falling apart. It seems like each time I visit a doctor they find something else wrong. I guess I should be thankful they are at least finding something. The last doctor I saw pretty much said everything was in my head but once I switched doctors I found out about a bunch of ailments. Too bad we can't do anything about the doctors who don't give a crap.