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Take a Chance…You Never Know
After reading all of the Voices of Hope stories, I decided to add mine.
As with many stories, my IC journey began with what I thought was a urinary tract infection. When I think back on it, I always remember having to urinate much more frequently than most people. In September 2010, this particular supposed UTI was not fixable. A sample of my urine showed no bacteria, and the three subsequent courses of antibiotics did little except make me nauseous.
After that episode, I was referred to a urologist who performed a cystoscopy. In the middle of the cystoscopy the urologist commented that my bladder was “abnormal.” The results of the cystoscopy were not encouraging. The urologist informed me my bladder was very inflamed and scarier yet, that he had found a tumor. I had been a smoker, but had quit thirty years before. Nonetheless, he felt the tumor was most likely cancerous as there is a strong connection between smoking and bladder cancer.
A few days later I had the tumor removed and, much to my doctor’s amazement and my joy, it was not cancerous, but rather a benign tumor called a von Brunn’s nest. At that point the urologist thought that it was possible the tumor had been causing my symptoms, but unfortunately, it turned out to be just a red herring, as my symptoms of frequent urination (every 20 minutes), bladder and urethral pain continued long after the tumor was removed.
Modifying my diet helped by helping me discover what foods would trigger pain, but it did not help to lessen frequency. Finally – a year after the surgery – I was diagnosed with IC (primarily by exclusion and the abnormal bladder cystoscopy results). After much research and discussion with my doctor, I decided to try Elmiron. To my dismay, most of the information I found while researching was negative. I am rather sensitive to medications, including antibiotics, so I grew considerably worried in light of all the possible side effects, but felt if it worked, some hair loss was preferable to the life I was then leading. I had been cautioned that there was a good possibility Elmiron would not work, but once again, seemingly against the odds, Elmiron did work and I can now sleep through the night and normally go 2 to 2.5 hours without needing the bathroom. Woo-hoo! I have had no side effects from Elmiron and this year, with the urologist’s blessing, decreased my dose from 400 mgs per day (200mg twice a day) to 300 mgs per day. Before Elmiron my life was ruled by the bathroom: if there was going to be a bathroom, where there was going to be a bathroom, when there would be a bathroom. I realize that Elmiron has not cured my IC (although I have tricked myself into believing it has) and that I will most likely have to stay on this drug for the rest of my life, but I at least now have a normal life, and am 100% out of pain as well! If you haven’t tried a treatment for fear of side effects, put those aside and take a chance. You never know.
Linda Giglio, 58