Endometriosis

Comprehensive, accurate and timely data are necessary for effective population health monitoring of endometriosis. The National Action Plan for endometriosis calls for improved data capture, use and linkage to improve understanding of the current state, impact, and burden of endometriosis in Australia (Department of Health 2018).

Gaps and limitations

The analysis in this report predominantly describes hospital and emergency department care for endometriosis, which likely reflects management of more severe symptoms. Information on the use of primary care, specialist care or pharmaceutical treatment would provide a more complete picture of endometriosis in Australia, but is limited by the absence of suitable data sources. Current gaps on the health of people living with endometriosis include:

• national, comparable and reportable data on primary and allied health care activity and outcomes
• outcomes of endometriosis-related hospitalisations and emergency department presentations
• emergency department presentations due to endometriosis symptoms prior to receiving a diagnosis
• diagnosis and treatment pathways for people with endometriosis, including multiple hospitalisations or emergency department presentations and waiting times
• information on some population groups, including First Nations people, people with disability, culturally and linguistically diverse populations, refugees and LGBTIQA+ populations
• the impacts of endometriosis on a person’s life, including school and work attendance and performance, daily activities, relationships, and mental health.

Data linkage opportunities

Where data are available, analysis can be limited by the inability to identify endometriosis as the purpose of treatment. Linked data presents an opportunity for improved understanding of the experiences and treatment patterns for people with endometriosis. Examples of linked data sources which could be explored for endometriosis include:

• The National Health Data Hub: The NHDH, formerly the National Integrated Health Services Information (NIHSI) analytical asset, is a major national linked health data asset which brings together information on health services, aged care services, disability services, immunisations and demography. Analysis could describe patient pathways and health service use in the years preceding and succeeding a diagnosis of endometriosis. This analysis could also explore the use of Medicare Benefits Schedule services and the medicines provided under the Pharmaceutical Benefits Scheme for the treatment of endometriosis.
• Person Level Integrated Data Asset: PLIDA, formerly the Multi-Agency Data Integration Project (MADIP), is a secure data asset combining information on health, education, government payments, income and taxation, employment, and population demographics (including the Census) over time. Analysis could explore the impact of endometriosis beyond a person’s health, such as reduced participation in school, work and sporting activities.

Data development opportunities

The Australian Government provided funding in the 2024–25 Federal Budget for the AIHW to develop a national sexual and reproductive health monitoring framework, data strategy and regular reporting. Menstrual disorders, including endometriosis, are one of the priority areas for the first phase of this work. See Sexual & reproductive health for more information.

Investment in endometriosis research

The National Health and Medical Research Council has expended $18.9 million towards research relevant to endometriosis between 2000 and 2022.

From its inception in 2015 to 31 May 2023, the Medical Research Future Fund has invested $19.11 million in 11 grants with a focus on endometriosis research. Examples include:

• $3.93 million to the University of Melbourne for improving diagnosis and treatment of endometriosis
• $1.94 million to the University of New South Wales for The Australian Endometriosis Clinicians Collaborative (AECC)
• $1.47 million to Deakin University for CoDeEndo: Co-Designing, Evaluating, and Implementing Supportive Care for Endometriosis.