The disease has a profound impact on quality of life. A Harvard University study concluded, "the impact of interstitial cystitis on quality of life is severe and debilitating". A Harvard Medical School guide states that the quality of life of interstitial cystitis patients resembles that of a person on kidney dialysis or suffering from chronic cancer pain. The condition is officially recognized as a disability.

It is not unusual for patients to have been misdiagnosed with a variety of other conditions, including: overactive bladder, urethritis, urethral syndrome, trigonitis, prostatitis and other generic terms used to describe frequency/urgency symptoms in the urinary tract.

IC/BPS affects men and women of all cultures, socioeconomic backgrounds, and ages. Although the disease previously was believed to be a condition of menopausal women, growing numbers of men and women are being diagnosed in their twenties and younger. IC/BPS is not a rare condition, however, IC/BPS is more common in women than in men. Early research suggested that IC/BPS prevalence ranged from 1 in 100,000 to 5.1 in 1,000 of the general population. In 2009, new research (now known as the RAND study) revealed that in the U.S alone, between 3 and 8 million people have interstitial cystitis. Up to 12% of women may have early symptoms of IC/BPS.