Living with interstitial cystitis: Early results from the METRIC survey

Background Interstitial Cystitis (IC) is a chronic inflammatory condition of the bladder wall of unknown cause(s), affecting more than 800,000 people in the U.S., of which 90% are female. The Interstitial Cystitis Association (ICA) is a non-profit IC advocacy group. Objectives In order to assess the impact and generate further awareness of IC, we developed a survey to gather information on IC-related life experiences. Methods 7700 surveys were mailed ICA members and people who requested information from the ICA and yielded a response rate of 37%. Results Respondents reported that IC significantly impacts their personal lives. 40.4% of respondents reported that their self esteem has suffered as a result of IC, 42.2% reported that IC has caused them to “miss out on life,” 31.0% reported that IC has led them to have suicidal thoughts and 22.0% reported that IC has caused them to lose close, meaningful relationships. One of the major impacts of IC among respondents is on sexual relations. IC has caused negative impacts on sharing intimacy (65.8%), greater pain during sexual activity (71.0%), decreased sexual desire (65.0%), decrease in sexual activity (74.2%), and abstinence from sexual activity altogether (24.5%). Despite these strong impacts, only 20.6% of respondents reported that their healthcare provider had offered advice or treatments to help with IC-related sexual concerns. Conclusion Further research into the epidemiology and treatment of IC is needed to minimize the impact of IC on people living with the disease.