Global guidelines needed to address inequities in endometriosis care

Adolescents, gender-diverse people and those with lived experience are underrepresented in endometriosis guidelines worldwide, a University of Queensland study has found.

The global study, with researchers from the World Health Organization, World Endometriosis Society senior board members, and patient group representatives, analysed endometriosis guidelines from 47 countries including 19 published in languages other than English.

Professor Gita Mishra, from UQ’s Australian Women and Girls’ Health Research Centre , said 70 per cent of the reviewed guidelines were not informed by people with lived experience of endometriosis.

“A significant proportion of guidelines did not involve people living with endometriosis in its development- particularly in developing countries with substantial gaps in Africa and Eastern Mediterranean,” Professor Mishra said.

“Our findings show the development of standardised international guidelines informed by patients is essential to ensure consistency in diagnosis, treatment and self-care.

“This is important, as we found considerable variation in recommendations for diagnosis, treatment, fertility care and non-medical management of endometriosis worldwide.

“Additionally, most guidelines originate from high-income settings, particularly Europe.

“Yet some countries have no guidelines, meaning women aren’t screened or cared for endometriosis at all.”

Endometriosis is an often-crippling condition where tissue, similar to the inner lining of the uterus, grows outside of it, and has no cure.

It is estimated to affect about 10 per cent – or 190 million – women of reproductive age worldwide.

Data from the Australian Longitudinal Study on Women’s Health further found 1 in 7 Australian women live with the condition.

“We were surprised to find 1 quarter of the guidelines we reviewed had not been informed by adolescents, despite symptoms and diagnostic delays often beginning during teenage years,” Professor Mishra said.

“Further, only 1 in 5 of the guidelines explicitly acknowledge gender diverse individuals – exposing persistent gaps in inclusivity.”

Dr Dereje Gete from UQ’s School of Public Health said identifying gaps in existing guidelines was a critical first step towards addressing global inequities in endometriosis care.

“Different countries face different challenges, including access to treatment, but minimum standardised guidelines are an important starting point in addressing healthcare inequities,” Dr Gete said.

“In countries without guidelines, even raising awareness of endometriosis, its symptoms and how it can be managed is a step forward.”

Dr Gete said all international guidelines were informed by gynaecologists, yet fewer than half included input from general practitioners.

“This needs to change – general practitioners are often the patient’s first port of call and play a pivotal role in early symptom recognition and referral,” he said.

Professor Mishra said despite global inconsistencies, Australia was leading the way with the 2025 publication of the Australian Living Evidence Guideline: Endometriosis.

Researchers will next work with the World Health Organization to develop standardised global guidelines.

Read the research in Communications Medicine.