OBJECTIVES: This study aimed to build a conceptual framework in patients with IC/PBS which is a chronic debilitating condition characterized by pelvic pain, urinary urgency, and urinary frequency. It affects around 0.7-1 million people in the US and mostly middle aged women. Diagnostic criteria developed for research are not efficient and missing 60% of all cases. Uncertainty surrounds definition, etiology, diagnosis, natural history, true prevalence, and most effective treatment(s). METHODS: Literature review results were used to design semi-structured telephone interviews to elicit concepts of importance for IC/PBS patients on functioning and life. Interviews were held with clinical experts and UK patients until saturation of concepts. Transcripts were analyzed thematically. RESULTS: Two clinical experts and 30 female patients were interviewed. IC/PBS was defined as a chronic pain syndrome that may begin as a pathologic process in the bladder in most (but not all) patients. Pain and frequency  were reported as the most bothersome symptoms. Relationships, activities, energy levels, and psychological impact were reported to be the key areas of impact. ‘Not being able to do what I used to’ , ‘worry about toilet access’ , ‘impact on work life’ , and ‘impact on family / home life’  were mentioned as having the greatest impact. A broad range of treatments was reported with a broad range of treatment side effects.  The experts’ results contributed the following: pain drives frequency and younger people report a heavier burden. CONCLUSIONS: The conceptual framework of this study contributes to the understanding of IC/PBS. IC/PBS has a profound and debilitating effect on all aspects of patients’ lives, from preventing them to work over participating in family life and traveling to being house-bound with greatly impacted change in roles and self-perceptions, leading to feelings of being ‘not-normal’ causing anxiety, depression and even suicidal tendencies.