Living With Interstitial Cystitis: A Qualitative Study of Women's Experiences.

BACKGROUND: Interstitial cystitis is a complex, highly challenging chronic inflammatory condition that is most predominant in women. It is characterised by persistent pain in the bladder and pelvis area and an urgent and frequent need to urinate during the day and at night. Despite the chronic and burdensome nature of interstitial cystitis, the lived experiences of women suffering from it have been inadequately explored. OBJECTIVE: We sought to acquire in-depth knowledge and insights into the experiences of Norwegian women living with interstitial cystitis. METHODS: A qualitative approach was used with an exploratory descriptive design, using the participants' own written stories of living with interstitial cystitis. The data were analysed using a reflective thematic analytic method. RESULTS: Three main themes came to the fore: (1) interstitial cystitis impacts every aspect of life, (2) struggling to be believed and heard, and (3) struggling to access personalised treatment for symptom alleviation. CONCLUSIONS: Interstitial cystitis is a complex condition that negatively impacts women's physical, mental, and sexual health. Women with interstitial cystitis may face disbelief and medical gaslighting compounded by a lack of awareness about the condition, which hinders their access to tailored treatment and care. The findings emphasise the need for competence and empathy among healthcare professionals and underscore the importance of an increased focus on conditions predominantly affecting women.