‘How do you explain a pain that can't be seen?’: The narratives of women with chronic pelvic pain and their disengagement with the diagnostic cycle

OBJECTIVES: Chronic pelvic pain (CPP) has an adverse effect on women's quality of life. Research has suggested that many women become dissatisfied with their care and withdraw from seeking help despite continuing symptoms. The aim of this study was to explore the processes which lead to disengagement and to understand the psychosocial processes that affect this group of women. DESIGN: A qualitative narrative approach was used, guided by phenomenological-hermeneutic tradition, and informed by the philosophy of Paul Ricoeur. METHOD: Thirty-two women with CPP were asked to write their stories about their illness trajectories. These written stories served as data which were analysed thematically according to narrative theory. RESULTS: In the search for validation and recognition women engaged in the diagnostic cycle. Many women do not complete this cycle, become stuck at a certain point, or re-enter the cycle repeatedly. They can only opt out if the problem is resolved or by choosing to disengage with medical care. CONCLUSIONS: While the medical consultation was a dominant theme, a complex interaction of factors was required to initiate disengagement. The dualistic nature of the diagnostic process prohibits women from telling their stories. Women were left feeling disempowered and in limbo, and they were at a loss as to how to manage their pain.