The aim of this study was to explore the lived experience of interstitial cystitis (IC)/painful bladder syndrome (PBS). A phenomenological approach with emphasis on reflection and openness was adopted. Twenty women diagnosed with IC an average of nine years prior to data collection produced a written account of their experiences. The textual data was analyzed using thematic analysis. Four themes were derived from data analysis: diagnostic uncertainty; restrictions and limitations on life; self-management; and interpersonal relationships and social support. Women reported issues in receiving a diagnosis of IC, undergoing numerous diagnostic tests, and experiencing multiple referrals. Having undergone numerous treatments with limited success, women sought information and management strategies outside of standard medical care and reported a negative impact on sexual and social relationships. The findings illustrate the complex nature of women’s experiences and the physical and psychological impacts and effects of IC/PBS on women’s daily lives.