Interstitial cystitis prevalence in men higher than previously thought

Key Points

Atlanta-Nearly as many American men as women may suffer from interstitial cystitis/bladder pain syndrome (IC/BPS) symptoms. And more men may have IC/BPS symptoms than have chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) symptoms. These surprising findings from the RAND Interstitial Cystitis Epidemiology (RICE) male study provoked plenty of surprise and controversy at the AUA annual meeting in Atlanta.

When Dr. Suskind finished her presentation, attendees jumped to the microphone immediately to question the survey methods. One pointed out that nonresponders to a health survey usually have about half the symptoms of responders, so that if two-thirds did not take part in the survey, as Dr. Suskind reported, then the number would be far overestimated. It would be too big a leap from the 149 patients who completed the full interview about symptoms. "Ridiculous," said one urologist about the estimate in a later CP/CPPS session.

Still, there is survey work to do to confirm whether these numbers indeed reflect the prevalence of IC/BPS in men, Dr. Clemens told Urology Times. In the RICE study of women, IC experts confirmed the IC/BPS diagnosis in a subgroup of women reporting symptoms, helping to confirm the prevalence, but this has yet to be done in the men.

The prevalence in women based on the RICE data also seemed high when they were first reported, Dr. Clemens pointed out. But further RICE data also showed that most of the women reporting symptoms still had symptoms a year later, that 90% had sought care for these symptoms, and that their quality of life was similar to that of women who have IC diagnosed in the clinic.

"In men, we don't have that yet because we're just analyzing the data. So, it's possible that this is an overestimate because we may be identifying more mild symptoms, but only time will tell," said Dr. Clemens, associate professor of urology at the University of Michigan. In the women, he pointed out, these methods identify a group that's pretty symptomatic, and although it's not certain that they have IC/BPS, "Whatever they have, you don't want."