Evidence-Based Criteria for Pain of Interstitial Cystitis/Painful Bladder Syndrome in Women

ObjectivesNo diagnostic physical signs, urologic findings, or laboratory tests are available for interstitial cystitis/painful bladder syndrome (IC/PBS). Its diagnosis is determined by symptoms and the exclusion of mimicking diseases. We hypothesized that certain pain characteristics are sensitive criteria for diagnosing IC/PBS.MethodsIn women with recent-onset IC/PBS recruited in 2004 to 2006 for the case-control study, “Events Preceding Interstitial Cystitis,” we identified the locations of each patient’s pain and in a nonleading way asked about the effects of 17 different experiences (criteria) on the pain. We identified a set of criteria that described the largest number of patients in the Events Preceding Interstitial Cystitis study. In a secondary analysis of another cohort recruited by others in 1993 to 1997, the Interstitial Cystitis Database, we determined the proportion of patients captured by these same criteria.ResultsIn the Events Preceding Interstitial Cystitis study, pain that worsened with a certain food or drink and/or worsened with bladder filling and/or improved with urination was reported by 151 (97%) of 156 patients. These were the only three criteria that applied directly to the bladder. The same three criteria described the pain of 262 (97%) of 270 women in the Interstitial Cystitis Database who “definitely” had IC/PBS.ConclusionsAn hypothesis generated in one IC/PBS patient group and tested in another—pain that worsened with certain food or drink and/or worsened with bladder filling and/or improved with urination—was described by 97% of the patients with IC/PBS in each cohort. This triad might describe the pain of IC/PBS and contribute to a sensitive case definition. Estimating specificity awaits comparison with other diseases with similar symptoms.