The Treatment and Mistreatment of Chronic "Urgency and Frequency"--Gathering Women's Experiences About Interstitial Cystitis

In 1970 I had a bladder infection, hardly a cause for alarm. My gynecologist cleared up the infection with antibiotics but sent me to a urologist just to be on the safe side. Little did I know that I had just embarked upon a course of pain, repeated treatments, and frustration that would last for the next three decades. Between 1970-1975, I saw three urologists, all of whom had the same opinion: my urethra was too narrow to empty efficiently ("urethral stenosis"), and I'd have more infections ill did not have my urethra dilated periodically. The doctors said that, with the dilations, I'd be fine, and I believed them. It never occurred to me that I needed to know how other patients had fared with this treatment before agreeing to it. Over the next five years, I had 10 dilations, each followed by instillation of silver nitrate into my bladder and a course of antibiotics. After the first dilation, I experienced "urgency and frequency" about six months postsurgery. After the 10th dilation, chronic urgency and frequency set in: I felt like I had to urinate, urgently, every second, no matter how often I went to the bathroom. Painful gas and intestinal bloating also became chronic, along with overwhelming fatigue. I feared the treatment had been a terrible mistake.