The Urology Channel website has stories that IC patients have shared. Here is one from a 30-year-old woman:
From urinary tract infection to IC to Overactive bladder
At age 30, I was diagnosed with an e-coli urinary tract infection. That was after I had taken different antibiotics for four months and they could not find the right one so they finally did a culture and it was e-coli.
After that I had to go into the urologists office every six months to dialate the urethra. I had lower GI tests and I did not have a kidney problem and by process of elimination, it was determined IC.
About five years later they used DMSO treatments for about two years and I grew intolerant to the medicine and I could not withstand the pain in the bladder during the 30 minute wait after treatment. I was started on elmiron. I never liked it and I was always taking the least amount that I could because it caused me to have diarreha whenever I took the full dose but I persisted on it for eight years. The last year was the worst because my new doctor in GA insisted that I take 400 mg twice daily. The diarreha was horrible. I could not even leave the house and once I had a rupture from trying to hold it until I got home. That bleeding scared me and I sought a second opinion. All this time my symptoms were really not that great just better.
I went to a new urologist and she suggested that my symptoms were more like overactive bladder than IC. On the last occasion that I had an upper and a lower GI, they had not seen sores in my bladder as before but the medication regimin was not adjusted. She started me on enablex for my bladder and a smear of estrace on the urethra everyday. I could not believe it. I was and am pain free and within a week I no longer had that burning sensation with urination and my bladder was calm. The best result is that I am able to sleep most nights for at least six hours. I actually have dreams again.
First I would recommend a female urologist because they understand from experience the female anatomy and I am now on oxytro, the patch for my overactive bladder. I also have adjusted my diet with no caffeine, no carbonated drinks, at least 64 oz. of water per day, and less red meat. I am exercising vigorously twice a week and I can do any activity that I choose. It is wonderful and I do not have a bowel problem any longer.