Living with Interstitial Cystitis

Hi, my name is Denise and I was diagnosed with IC in 1995. My primary physician recommended that I see a Urologist due to the repeated negative UTI results. I was experiencing problems for many years prior to being referred. My urologist initially diagnosed me by way of a Cystoscopy He was able to rule out bladder cancer through a Biopsy.

Following that diagnosis, he tried the Bladder Instillations/DMSO treatments in office without the use of anesthesia…this was intolerable and inhumane, so needless to say, I discontinued them upon the 2nd or 3rd treatment. He also tried the Elmiron which gave me such terrible heartburn and gas, I stopped this medication about a month later. I also tried the Detrol, but to little or no avail.

I have eliminated many items that contain caffeine and acid, however, the size of my bladder has decreased greatly since the initial diagnosis, that its nearly impossible to continue on without some type of invasive procedure. The capacity of my bladder was down to 2-2.5 ounces as of November 2006. I am scheduled to have another distention done this month. I am currently going to the restroom as often as 3-4 times an hour and constantly up and down through out the night. Needless to say, this leaves me grouchy and a bit unbearable each day. I am currently taking Elavil which is designed to help with the pain and frequency of the night trips to the restroom, its also an antidepressant which helps control the anxiety

I trust my urologist and his opionion, but I am to a point now where I am in need of answers and other treatment options. Is there anyone out there who has had any type of augmentations or bladder replacements done who could share their stories and the name of their urologists?