Chronic pain across clinical settings: the changing understanding of pain and its treatment in endometriosis

Abstract

An ongoing shift toward multidisciplinary pain care and growing emphasis on non-pharmaceutical treatment are reshaping the parameters of how chronic pain is assessed and treated. The article explores these ongoing changes through a chronic gynecological illness, endometriosis. Drawing on interviews with clinicians, people with endometriosis and endometriosis activists in Finland, we ask how pain is understood and its treatment envisioned in cases where the standard course of endometriosis treatment does not alleviate pain. The analysis shows that difficult-to-treat endometriosis pain is conceptualized differently at different clinical sites including endometriosis clinics, pain clinics, emergency care, and primary care settings. We demonstrate that pain treatment in endometriosis is not fixed but constitutes an object of ongoing negotiations between the patient and clinician. In particular, tensions arise when patients move between the siloed clinical sites, and their pain is re-evaluated and approached through different epistemic framings of pain and pain care.