A meta‐ethnography of patients' experiences of chronic pelvic pain: struggling to construct chronic pelvic pain as ‘real’

Aim To review systematically and integrate the findings of qualitative research to increase our understanding of patients' experiences of chronic pelvic pain. Background Chronic pelvic pain is a prevalent pain condition with a high disease burden for men and women. Its multifactorial nature makes it challenging for clinicians and patients. Design Synthesis of qualitative research using meta‐ethnography. Data Sources Five electronic bibliographic databases from inception until March 2014 supplemented by citation tracking. Of 488 papers retrieved, 32 met the review aim. Review Methods Central to meta‐ethnography is identifying ‘concepts’ and developing a conceptual model through constant comparison. Concepts are the primary data of meta‐ethnography. Two team members read each paper to identify and collaboratively describe the concepts. We next compared concepts across studies and organized them into categories with shared meaning. Finally, we developed a conceptual model, or line of argument, to explain the conceptual categories. Results Our findings incorporate the following categories into a conceptual model: relentless and overwhelming pain; threat to self; unpredictability, struggle to construct pain as normal or pathological; a culture of secrecy; validation by diagnosis; ambiguous experience of health care; elevation of experiential knowledge and embodiment of knowledge through a community. Conclusion The innovation of our model is to demonstrate, for the first time, the central struggle to construct ‘pathological’ vs. ‘normal’ chronic pelvic pain, a struggle that is exacerbated by a culture of secrecy. More research is needed to explore men's experience and to compare this with women's experience.