Dear Alice,

My sister suffers from this (IC) disorder and it has been absolute hell for her. Just as you said she visited numerous doctors over the course of almost two years only to get confirmation from a urologist. As one can imagine it is debilitating for her as it was also hard for me and my family...but we stick by her even though her pain causes irrationality and irritability—it is hard to be around her basically. She is managing it and regards a pain free day as a day to revel in; she appreciates life more when she is not in pain. IC is commonly misdiagnosed and originally my sister's urologist didn't diagnose her with it (even though he knew that is what caused her pain) because he knows it is a lifelong condition full of pain. The upside to it is that my sister was persistent in finding out what the problem was and didn't care that the doctors thought she was a hypochondriac. My sister actually informed a DOCTOR (a visit unrelated to IC) about what to prescribe to patients who suffer this disorder - because he either didn't have any experience with it or wanted to know what worked for her. I feel that more people should be aware of this disorder so that more research can be done. Right now that is the problem, not many know about it so it is continuously misdiagnosed therefore statistically showing that it is uncommon, which isn't true! If more were properly diagnosed then this country would see the overwhelming need to research IC -especially considering they will live the rest of their lives with urinary pain. Imagine a bladder infection x10- you have IC! Fortunately she is doing everything she can to help the cause by participating in a study at Johns Hopkins University. Thanks Alice for even recognizing what IC is, I know this QA is older but you saved that inquirer a lot of time and money by pointing out the possibility of IC.

—Caring Sister