Diagnostic Futures in Endometriosis – Workshop: Summary Report

Abstract

In August 2025, a half-day workshop titled Diagnostic Futures in Endometriosis was convened to explore how endometriosis diagnosis is currently experienced and how diagnostic pathways might be reimagined for the future. The workshop was hosted by Lucy Whitaker (Centre for Reproductive Health, Institute for Regeneration and Repair) in collaboration with Nicola Boydell and Marie Larsson (Centre for Biomedicine, Self and Society, Usher Institute), and supported by funding from the Scottish Government’s Women’s Health Plan, the William Longworth Fund and the Institute for Regeneration and Repair. The workshop brought together 28 participants, including people with lived experience of endometriosis, clinicians involved in endometriosis care, and researchers from a range of disciplinary backgrounds. Participants also included individuals involved in endometriosis advocacy and support work, including representatives from organisations such as Endo Warriors West Lothian. Through a series of facilitated discussions and creative group activities, participants explored the meanings and implications of diagnosis in endometriosis, developed collective visions of more desirable diagnostic futures, and identified near-term priorities for change. Participants also discussed the potential acceptability and feasibility of emerging diagnostic technologies, including blood tests, advanced ultrasound and PET scanning. This report summarises the workshop activities and key insights generated through these discussions, highlighting how diagnosis is understood and experienced, shared themes across imagined diagnostic futures, and reflections on emerging diagnostic technologies.