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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, involving researchers from the World Health Organization, senior board members of the World Endometriosis Society and patient group representatives, analyzed endometriosis guidelines from 47 countries, including 19 published in languages other than English.

Gita Mishra, from UQ's Australian Women and Girls' Health Research Centre, said 70% 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 their development—particularly in developing countries, with substantial gaps in Africa and the Eastern Mediterranean," Mishra said.

"Our findings show the development of standardized 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 nonmedical management of endometriosis worldwide.

"Yet some countries have no guidelines, meaning women aren't screened for endometriosis or treated for it at all."

Endometriosis is an often crippling condition in which tissue similar to the inner lining of the uterus grows outside it. It has no cure.

It is estimated to affect about 10%—or 190 million—women of reproductive age worldwide.

Data from the Australian Longitudinal Study on Women's Health further showed that one in seven Australian women lives with the condition.

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