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My struggle with IC began with my diagnosis in 1992. Since knowledge is power, I quickly read everything I could find about it, including a substantial amount of information from the ICA. I was very proactive in trying to find relief, and did everything I could to try to help myself, including donating to research to help discover a cure. I attended a local support group for as long as it existed. I tried all of the suggested ways of managing the disease. I had numerous cystoscopies, took Paxil for pain, but my symptoms just got worse over the years. I was twice ruled out of a bladder stem cell trial study because I did not fit the trial guidelines. Meanwhile, according to my urologist, my bladder shrunk to the size of a walnut and became very hard. This caused me to begin having to wear large pads for leakage and getting up at night to urinate every fifteen minutes. IC dominated my life! My urologist did not know how to help me, so I decided to take matters into my own hands and had bladder reconstruction surgery in 2009. The surgeon and his staff were amazing. My reconstructed bladder was made with intestinal tissue and I was fortunate to retain the nerve endings that allow me not to have to use a catheter. Thanks to the surgery I am now “normal” with a bladder that can hold out for as long as six hours. This has given me my life back!

Though I’m sure IC is still with me, I have absolutely NO symptoms at this point. I am now 81 years old, doing well, and visit my urologist once a year for follow-up. I found hope for my IC and I hope you do too!