Background: This study aims to investigate the self-perception of symptoms, medical help seeking, and self-help strategies of women with interstitial cystitis (IC).
Methods: A mixed method of qualitative and quantitative approaches was employed. The qualitative approach used in-depth interviews about the subjective experience of symptoms, medical help seeking, and self-help strategies for their IC. The quantitative inquiry was conducted by a yes or no response to the question "Did self-perceived severe symptoms of IC interfere with your daily life?" A loglinear model was applied to investigate the associations between possible factors.
Results: This study recruited 68 women aged 20 to 69 years, of whom 22 were interviewed for qualitative data. About 72.1% of the women responded that self-perceived severe IC symptoms interfered with their daily life. A significant negative association between employment and self-perceived severe IC symptoms (P < .05) was observed. Qualitative results revealed three important themes: (1) bothersome symptoms-all-day bladder pain and lower urinary tract symptoms and deteriorated quality of life, (2) medical help seeking-exhaustion and frustration, (3) self-help strategies-coexisting with IC or feeling helpless.
Conclusions: IC women feel exhausted and frustrated by seeking medical attention for this incurable disease for a long time. IC women have troubled and uneasy daily lives. Being employed or engaging in activities can divert attention to alleviate symptoms. IC patient support groups allow patients to share their self-help experiences with interdisciplinary medical teams to provide physical and psychological treatment.
Keywords: interstitial cystitis; medical help seeking; self-help strategies; symptom perception.
© 2020 John Wiley & Sons Australia, Ltd.