This opinion piece advocates for community-based support and improved diagnosis in endometriosis care, highlighting inequalities in access across primary and secondary care.
Endometriosis affects approximately 10% of women of reproductive age worldwide. Journeys to diagnosis can be complex, with an average of 9 years between development of symptoms and diagnosis, which has not improved despite guidance and policy focus. Learning how to reduce this time was identified as a James Lind Alliance Top Ten research priority. There are well-documented challenges throughout care journeys for people with known or possible endometriosis. Endometriosis can be associated with symptomatic impacts throughout the life course and across body systems, and support necessitates holistic attention to these. This opinion piece explores community-based support opportunities, advocating for a collaborative, cohesive approach among professionals. Endometriosis is a chronic condition, with treatment often extending across primary and secondary care for several years. Inequalities in care for endometriosis are evident, whether that be due to geographic variation in provision of specialist centers or racial disparities in diagnosis rates. Deprived communities also face lower referral rates and subsequent lower specialist diagnosis. The persistent focus of research on secondary care drives these inequalities as those unreferred and undiagnosed women are left unaccounted for within the endometriosis sphere. The role of primary care as advocates and enablers of these women is pivotal in reducing inequity of care. Smoother journeys for people living with endometriosis are urgently needed and we need to build bridges between our services to enable this to happen.
No takes yet. Share an insight, caveat, or question.
Karavadra et al. (2025) studied this question.
Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context: