Who Gets IC?

Research supports that interstitial cystitis (IC) is much more prevalent than originally thought. The total and the proportion of men with IC is much higher than originally estimated.

Women: 3 to 8 million women in the United States may have IC. That is about 3 to 6% of all women in the US.

Men: 1 to 4 million men have IC as well, however, this number is likely lower than the true rate because IC in men may often be mistaken for another disorder, such as chronic prostatitis/chronic pelvic pain syndrome.

Children: Many adults comment that their IC symptoms started in childhood. Pediatricians also diagnose children with this chronic condition. But, epidemiology studies have not yet been done to estimate the true prevalence of children with IC.

How We Calculated the Numbers

Statistics for women are based on the findings of the RAND IC Epidemiology Study (RICE), the largest IC epidemiology study ever undertaken. This survey of more than 100,000 US households told us that from 2.7 to 6.5 percent of US women may have IC, which translates to about 3 to 8 million women. On the landmark IC studies page, there is a summary of the findings and poster session presented at the 2009 American Urologic Association meeting.

Prevalence estimates for men are based on the findings of the Boston Area Community Health (BACH) survey conducted in 2002 of residents in the Boston metropolitan area. Researchers interviewed some 6,000 men and women, ages 30 to 79, in their homes. One third of the randomly sampled population was African American; one third, Hispanic; and one third, Caucasian. At the 2008 AUA annual meeting and in the Journal of Urology, investigators revealed that many more men appear to have IC than initially thought. There’s a summary of the BACH findings on the landmark IC studies page.