I wished they would find something that would help with IC. I've had IC since 1992. I does not get better. I have tried everything to get relieve without long term success. I am in horrible pain most of the time. Get very depressing over time. Did Botox help?
I also have IC and am an IC support group leader for patients in Missouri and Arkansas. Though there is no cure for IC there are many things that can help, many coping tools.
The first big thing is diet. If you are not willing to put the effort into not eating the trigger foods your going to stay in pain! The big triggers to avoid are caffeine (including coffee and chocolate,) tomatoes, soda, alcohol, and cigarettes.
There are many treatments that can help however finding the coping tools that work for you take time and work. My IC is kept pretty flared up by some secondary issues, but with a lot of work, trial and error we have found many things to get my flares under control.
Have you tried bladder instills with rescue instill meds, lidocaine sensorcaine a steriod etc. If you have an they didn't work you might try having them use medications with no preservatives. This made a big difference to me!
There is a lot of info out there from the ICA and the IC-Network that can help you.
You can also pm me for the more information, as well.
Director of MOARK Interstitial Cystiti
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