Women's Illness Experience With Interstitial Cystitis/Bladder Pain Syndrome: A Scoping Review

Abstract

What is known about the illness experience of women with Interstitial Cystitis/Bladder Pain Syndrome? Interstitial Cystitis/Bladder Pain Syndrome is a rare, chronic condition of the urinary bladder that affects women nine times more often than men. Without appropriate treatment, it can severely impact quality of life and psychosocial well-being. Achieving a deeper, gender-specific understanding of the illness experience is crucial for empowering women to develop effective self-management and coping strategies. Existing scientific literature presents a fragmented perspective on patients' experiences. To provide a comprehensive overview of the available evidence, a scoping review was conducted following the JBI methodology, guided by the Illness Constellation Model by Morse and Johnson. Out of 1206 hits, 25 studies met the inclusion criteria, varying in research design, methodological reporting precision, and inclusion criteria. Most of the evidence referred to the Stage of Striving to Regain Self, with no results clearly addressing the Stage of Uncertainty. All results were based on the perspectives of affected women, with four studies including expert opinions. However, none of the studies included direct information from family members, whose perspectives were inferred indirectly. The evidence highlighted the physical, psychosocial, and cognitive challenges experienced throughout the illness. Women with Interstitial Cystitis/Bladder Pain Syndrome face significant challenges that affect their family life, relationships, and career, though research on family interactions is limited. Well-being is closely linked to self-management, partner support, and coping mechanisms, but what constitutes effective self-management from the women's perspective remains unclear. The review calls for more qualitative research, methodological transparency, and improved support and awareness in healthcare practices. The Illness Constellation Model appears insufficient to fully capture the experiences of individuals with Interstitial Cystitis/Bladder pain syndrome, particularly the recurring nature of uncertainty throughout the illness trajectory. Future research should aim for a deeper understanding of successful self-management and coping strategies, including the role and perspectives of family members.