Two landmark Reviews published in The Lancet Obstetrics, Gynaecology & Women's Health reveal stark global inequities in how endometriosis is recognised, treated, and prioritised in national health systems.
Endometriosis is a chronic inflammatory disease that can cause severe pelvic pain and infertility. It affects an estimated one in ten women and girls worldwide, yet the new research shows that across the 194 WHO member states, nearly half of all countries have no national policies or clinical guidance on diagnosis or care.
Global gaps in care and guidance
The first study, Availability of region-specific endometriosis care guidance: a global scoping review , reveals striking disparities in the availability of region-specific endometriosis care guidance and treatment around the world - with more than a quarter of countries lacking any publicly available clinical recommendations. Only 7% have official government-endorsed clinical care guidelines. For many countries, the only regional endometriosis care guidance identified was from informal sources, such as advocacy websites or social media, contributing to wide inconsistencies in care. Researchers found that while Europe had the greatest availability of guidelines, many low- and middle-income countries had little or no formal guidance for providers or patients.
First author Devon Evans, Assistant Professor at the University of Manitoba, says: 'Our findings show that many people living with this chronic condition are navigating care in regions where no official recommendations exist.'
'Access to evidence-based, culturally relevant and locally actionable care guidance is critical for improving outcomes in endometriosis,' adds senior author Professor Stacey Missmer, Associate Chair for Research of Obstetrics and Gynecology at the University of Michigan.
Co-senior author Linda Giudice, Distinguished Professor of OB/GYN/Reproductive Sciences at the University of California, San Francisco and past president of the International Federation of Fertility Societies (IFFS), adds: 'Local review and modification of existing care guidelines from countries with comparable populations or health system structures could rapidly drive awareness and implementation of effective endometriosis-focused care worldwide.'
Few countries have policies to support people with endometriosis
The second study, Endometriosis policy and delivery systems: a comprehensive global scoping review , found that half of all countries had no policy information available at all. However, 96 countries were raising awareness of endometriosis as a national problem, 48 countries had gone further to place endometriosis on the political agenda and 12 countries had adopted policies for a national endometriosis strategy. Despite the global scarcity of endometriosis policy frameworks, the review highlights promising examples; most notably Australia's and France's national action plans that are being implemented and evaluated.
First author, Tatjana Gibbons , of the University of Oxford's Nuffield Department of Women's & Reproductive Health , says: 'Despite increasing awareness of endometriosis, addressing the challenges faced by those living with the condition requires coordinated national strategies developed in collaboration with policymakers, advocates and patients themselves, to reduce its global burden.'
'While the substantial personal and socioeconomic impact of endometriosis is clear, there are huge disparities in the availability of policies that help the care of people with the condition across the world,' said senior author Professor Krina Zondervan , Head of the Nuffield Department of Women's and Reproductive Health at the University of Oxford and co-director of the Oxford Endometriosis CaRe Centre.
Dr David Adamson, co-senior author and president of the International Committee for Monitoring Assisted Reproductive Technologies (ICMART) adds: 'The lack of health care policies means that patients and clinicians have no foundational resources or requirements upon which to rely; potentially amplifying socioeconomic, geographical and clinical barriers to accessing needed endometriosis services.'
The authors call for governments, medical societies and patient advocacy groups to collaborate in creating, maintaining and promoting clear, region-specific endometriosis care standards. These efforts, they say, are essential to reduce diagnostic delays, improve quality of life and ensure equitable access to treatment across the globe.
From awareness to action: a call for coordinated global response
An accompanying editorial in The Lancet calls this the moment to move " from awareness to action ," urging governments to treat endometriosis as a chronic disease that demands coordinated national response. In a second accompanying editorial, the WHO states it recognises the impact of endometriosis on physical, mental, and socioeconomic wellbeing, and that there is a need to show that the presence of policies and guidelines translates into substantive impacts that improve the lives of millions of people with endometriosis.
The two papers ' Availability of region-specific endometriosis care guidance: a global scoping review ' and ' Endometriosis policy and delivery systems: a comprehensive global scoping review ' are published in The Lancet Obstetrics, Gynaecology & Women's Health.
