The life experiences of women with interstitial cystitis/bladder pain syndrome: A qualitative phenomenological study

AimTo explore the life experiences of women with interstitial cystitis.DesignA qualitative phenomenological study.MethodsFifteen women with interstitial cystitis were recruited from a regional hospital in Taiwan using purposive sampling. Data were collected via one-on-one semistructured interviews and analysed using the Colaizzi's method. Rigorous testing was conducted to identify the themes and subthemes.ResultsFour major themes were identified: torment, restriction, acceptance and empowerment. These themes reflect the life experiences of women with interstitial cystitis. They endured unrelenting physical and psychological distress and loneliness, experienced obstacles and limitations in daily living because of their symptoms, accepted reality and considered their symptoms as a part of everyday life and developed coping skills for the disease.ConclusionMedical care, psychological support and emotional venting are crucial for women with interstitial cystitis. Despite living a life full of frustrations and suffering caused by the unpredictable and unrelenting nature of interstitial cystitis, through external support and intrinsic positive cognitive reconstruction, women with interstitial cystitis gradually accepted that they were ill. They adapted to their situation, developed a suitable lifestyle and pace and ultimately achieved stable coexistence with the disease.Implications for the Profession and Patient CareAlthough women with interstitial cystitis are affected by an incurable disease, through adequate assistance and reconstruction of perception, they can develop coping skills and stably coexist with their disease. There is a delicate dynamic balance between their lives and disease.ImpactThis study may help clinicians to understand patients' life experiences and provide suitable care. This may improve the quality of care provided to women with interstitial cystitis and help them adapt to their disease, thereby improving their life satisfaction.Reporting MethodThis study was reported according to the COREQ checklist.Patient or Public ContributionWomen with interstitial cystitis contributed to the study data.