Understanding the Lived Experiences of Women with Interstitial Cystitis (IC): A Qualitative Study of Women's Sexual Experience

Abstract

Women who complain of pain related to the urinary bladder, with persistent urges to void and increased urinary frequency, often endure years of invasive investigations to receive the label of interstitial cystitis (IC), an "orphan disease" which has no known cause and no known cure. Despite women's reports, the existence of IC as a medical condition is still questioned. Few studies have aimed to explore the sexual experiences of women dealing with the lengthy diagnostic process and "treatment" of IC. The general experience of women dealing with this condition has been linked to themes of diagnostic uncertainty, limiting life, self-management and negative effects on interpersonal relationships. The current research aimed to understand the lived experiences of women with IC as they relate to their sexuality and their lives in general. Ten key informants, that is, women who had been diagnosed with IC were recruited to participate in individual, semi-structured interviews. Research team members used an iterative process of reviewing interview transcripts to uncover common themes of participant experiences. The current findings indicate the adverse experiences of women dealing with IC, which were linked to themes of negative physician-patient interactions, severely limited sexual relationships, restricted quality of life and the necessity for self-management of symptoms. These findings are relevant for how physicians fail to consider, discuss and prioritize the sexuality of women with bladder pain.