The scale of the problem is difficult to overstate. Endometriosis occurs when tissue similar to the inner lining of the uterus grows outside of it, often causing severe pelvic pain, heavy menstrual bleeding and, in many cases, infertility. There is no cure, and management typically involves a combination of surgery, hormonal treatment and non-medical strategies such as pain management and lifestyle support. The World Health Organization estimates that the condition affects roughly 10 per cent of women of reproductive age globally, equivalent to about 190 million people. Data from the Australian Longitudinal Study on Women’s Health, one of the largest and longest-running studies of its kind, indicate that one in seven Australian women lives with the condition, underscoring how widespread it is even in high-income countries with advanced health systems.

Professor Gita Mishra, from the University of Queensland’s Australian Women and Girls’ Health Research Centre, led the analysis together with collaborators from the World Health Organization, senior board members of the World Endometriosis Society and representatives of patient groups. The team’s central finding was stark: 70 per cent of the guidelines they reviewed had not been informed by people with lived experience of endometriosis. In other words, the vast majority of the documents that determine how hundreds of millions of patients are diagnosed, treated and supported were written without direct input from the very people they are meant to serve. Professor Mishra noted that the gap was particularly pronounced in developing countries, with substantial gaps identified across Africa and the Eastern Mediterranean.

The review also revealed considerable variation in what the guidelines actually recommend. Recommendations differed widely across four critical domains: diagnosis, treatment, fertility care and non-medical management of the disease. This inconsistency matters because endometriosis is already notoriously difficult to diagnose. Symptoms frequently overlap with other conditions, and patients commonly wait years for a definitive answer. When national guidelines disagree about which diagnostic tests to order, which treatments to prioritise or how to approach fertility preservation, the result is a lottery of geography, in which the quality of care a patient receives depends largely on where she happens to live. Professor Mishra emphasised that the development of standardised international guidelines informed by patients is essential to ensure consistency in diagnosis, treatment and self-care across borders.

Compounding the problem, most existing guidelines originate from high-income settings, particularly Europe, leaving large portions of the world’s population without authoritative local guidance. Some countries have no endometriosis guidelines at all, which means, as Professor Mishra pointed out, that women in those settings are not screened or cared for the condition in any systematic way. In such contexts, the disease may go unrecognised entirely, with patients cycling through primary care, emergency departments and specialist clinics without ever receiving an accurate diagnosis or an evidence-based treatment plan. The absence of guidance also affects health professionals, who are left to make high-stakes clinical decisions without a shared evidence framework.

One of the most surprising findings of the review concerned adolescents. A quarter of the guidelines analysed had not been informed by evidence relating to adolescents, despite the fact that symptoms and diagnostic delays often begin during the teenage years. Endometriosis is frequently dismissed in young patients as normal period pain, and delayed diagnosis during adolescence can allow the disease to progress unchecked, potentially affecting fertility and quality of life for decades. The researchers argue that guidelines which fail to account for the adolescent experience leave clinicians without the tools to recognise the disease early in the population where early recognition matters most.

Inclusivity gaps extend beyond age. Only one in five of the reviewed guidelines explicitly acknowledged gender-diverse individuals, exposing what the researchers describe as persistent blind spots in the clinical literature. Gender-diverse people can and do experience endometriosis, yet guidance documents that frame the condition exclusively around cisgender women risk making these patients invisible to health systems, discouraging them from seeking care and leaving clinicians unprepared to provide it. The finding adds endometriosis to a growing list of conditions for which guideline development has not kept pace with a more inclusive understanding of who can be affected.

Dr Dereje Gete, from the University of Queensland’s School of Public Health, said identifying gaps in existing guidelines was a critical first step towards addressing global inequities in endometriosis care. He acknowledged that different countries face different challenges, including unequal access to treatment, but argued that minimum standardised guidelines are an important starting point in addressing healthcare inequities. In countries without any guidelines at all, he noted, even raising awareness of endometriosis, its symptoms and how it can be managed represents a meaningful step forward. Awareness campaigns and basic educational resources can begin to break the silence and stigma that surround the condition in many parts of the world, even before full clinical guidelines are in place.

The composition of the guideline development teams themselves also came under scrutiny. All of the international guidelines reviewed were informed by gynaecologists, which is perhaps unsurprising for a condition managed largely within specialist gynaecological care. Yet fewer than half included input from general practitioners. Dr Gete argued that this needs to change, because general practitioners are often the patient’s first port of call and play a pivotal role in early symptom recognition and referral. A patient whose family doctor does not recognise the warning signs of endometriosis may never reach a gynaecologist at all, or may reach one only after years of unnecessary suffering. Guidelines that ignore the primary care interface therefore miss the point at which the diagnostic journey most often begins.

Despite the global inconsistencies the review documented, the researchers point to Australia as a model of what better looks like. The 2025 publication of the Australian Living Evidence Guideline: Endometriosis represents a new generation of guidance designed to be continuously updated as evidence evolves, rather than frozen at the moment of publication. The living guideline approach is particularly suited to a condition like endometriosis, where research is advancing rapidly and patients have long complained that clinical practice lags behind the science. Building on the momentum of the review, the research team will next work with the World Health Organization to develop standardised global guidelines, an effort that, if it succeeds in embedding patient voices, adolescent perspectives and inclusivity from the outset, could begin to close the gaps that have left so many of the 190 million people living with endometriosis without the care they need.

Subject of Research: Global inequities and gaps in endometriosis clinical guidelines

Article Title: Global guidelines needed to address inequities in endometriosis care

Article References: Global guidelines needed to address inequities in endometriosis care. (n.d.). Original publication

Image Credits: AI Generated

DOI: Not provided

Keywords: endometriosis, clinical guidelines, health inequity, women's health, University of Queensland, World Health Organization, adolescent health, gender-diverse health, patient involvement, diagnostic delay, global health, Communications Medicine