A recent study from the University of Queensland has highlighted a significant issue: adolescents, gender-diverse individuals, and others with direct experiences of endometriosis are not adequately represented in guidelines for managing the condition worldwide.
The research involved collaboration with experts from the World Health Organization and the World Endometriosis Society, analyzing endometriosis guidelines across 47 countries, including 19 that were published in languages other than English.
According to Professor Gita Mishra from the Australian Women and Girls’ Health Research Centre, around 70% of the guidelines examined did not involve input from individuals living with endometriosis. She pointed out that many of these guidelines, particularly in developing nations, lack contributions from those directly affected by this debilitating condition.
“Our findings indicate that the creation of standard international guidelines informed by patients is crucial,” Professor Mishra said. “This will help ensure that diagnosis, treatment, and self-care practices are consistent globally.” The study uncovered significant differences in recommendations for diagnosing, treating, and managing endometriosis, particularly in fertility care, varying widely across different parts of the world.
Additionally, a troubling fact emerged: some countries have no guidelines at all, which means women there may not receive the necessary screening or care for endometriosis.
Endometriosis is a painful condition in which tissue similar to the lining of the uterus grows outside of it, and currently, there is no cure. It is estimated that around 190 million women of reproductive age, or about 10%, are affected globally. Statistics from the Australian Longitudinal Study on Women’s Health indicate that 1 in 7 women in Australia live with this condition.
Professor Mishra expressed surprise at finding that one-quarter of the guidelines lacked input from adolescents, despite many experiencing symptoms during their teenage years. She noted that only 20% of the guidelines recognized gender-diverse individuals, highlighting ongoing issues with inclusivity.
Dr. Dereje Gete from the School of Public Health at UQ emphasized the importance of identifying these gaps. He stated, “Different countries have unique challenges regarding treatment access, but having basic standardized guidelines is a vital first step in addressing healthcare inequalities.” He added that in regions without guidelines, raising awareness about endometriosis and how to manage it is a valuable advancement.
Dr. Gete also pointed out that while all international guidelines involved gynecologists, less than half incorporated insights from general practitioners, who often serve as the first point of contact for patients.
Despite these global inconsistencies, Australia is making progress with the upcoming release of the Australian Living Evidence Guideline: Endometriosis, expected in 2025. Looking ahead, researchers plan to work alongside the World Health Organization to develop standardized global guidelines for managing endometriosis.
