Endometriosis affects about 190 million women globally and around 1 in 7 women in Australia by the age of 49, as well as an unknown number of gender-diverse people. There is no apparent cause, but several contributing factors have been suggested, including immune system changes. With no known cure, a wide range of potential symptoms and long diagnostic delays, endometriosis is one of the most disabling chronic health conditions women can experience. Approximately 2 in 5 women in Australia miss days of work or study due to period symptoms, such as pain or heavy bleeding, with endometriosis often the reason for up to four sick days per month.

Endometriosis awareness is increasing, including efforts to reduce the silence and stigma around an otherwise invisible illness. Australia is leading the way with new research to aid endometriosis diagnosis and treatment and it was the first nation to release a National Action Plan for Endometriosis (NAPE). Countries such as France, Canada and the United Kingdom have followed suit, while there are movements in others, such as in New Zealand, advocating to do the same. Australia has also added new drugs for managing endometriosis to the Pharmaceutical Benefits Scheme. At the same time, broader changes to policy have gained momentum, including longer appointment times with GPs, more Medicare-rebated Allied Health sessions and reproductive health leave.

However, funding for endometriosis remains considerably lower than for other common chronic conditions such as asthma and diabetes. In addition, many current investments have not yet been evaluated for their effectiveness in improving the lives of those living with this incurable disease. Consequently, we propose four areas of policy focus that aim for a more equitable and effective investment in endometriosis and women’s health more broadly.

1. Learning from and renewing the NAPE

Released in 2018, the NAPE outlined three priority areas: (1) awareness and education; (2) clinical management and care; and (3) research. According to the 2024 Progress Report, the NAPE has made advances in all three areas. For example, the Pelvic Pain Education Program (PPEP) Talk has been delivered to over 110,000 students nationally. In addition, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists released Australia’s first evidence-based Clinical Practice Guidelines and created the Raising Awareness Tool for Endometriosis. The National Endometriosis Clinical and Scientific Trials Network has also been established, bringing researchers, healthcare providers and advocates together to build a national endometriosis research program.

Clearly, considerable effort has been invested to address endometriosis at a national level. However, lessons from the NAPE’s implementation highlight that more work is needed, such as improving non-surgical diagnostic pathways and establishing centres of expertise in endometriosis and pelvic pain.

There have also been calls for a second NAPE to build on the momentum through “continued investment and focus”. With an imminent federal election, policymakers at both the political and bureaucratic level can recalibrate their funding priorities. A second NAPE could take stock of recent advances in endometriosis diagnosis, treatment and care to clearly signal that women’s health remains a priority, as the National Women’s Health Strategy 2020-2030 indicated. This strategy, released in 2018, aims to “reduce the prevalence and impact of endometriosis and associated chronic pelvic pain”. Its focus on the prevalence of endometriosis, despite it being an incurable disease with poorly understood origins, is indicative of how much our understanding of the disease has evolved in the last seven years. Instead, the focus should be on improving diagnosis and treatment options.

2. Continue to boost investments in women’s health

At the national level, there is promising continuity in financial investment on endometriosis. In the 2024-25 Budget, the Albanese government invested $160 million in a tailored women’s health package. In February this year, the government promised to raise the number of endometriosis and pelvic pain clinics from 22 to 33, with a $573 million funding promise for women’s health, which was matched by the opposition. Significantly, this figure has now been raised to $793 million to improve healthcare for women in the 2025-26 Budget, although this additional spending will heavily focus on contraceptives and menopause rather than on endometriosis in particular.

An injection of funding is much needed, as research shows that women experience pain differently to men and are more likely to suffer from chronic pain. In addition, compared to men, it usually costs women more to look after their health. While more government investment is welcome, it also pales in comparison to the scale of the problem. A conservative estimate is that the economic burden of endometriosis in Australia is over $24 million a day.

At the state level, there is less explicit attention on endometriosis. In the NSW 2024-25 Budget Overview, women’s health received less specific attention. While emergency departments were set to receive $480.7 million, and hospital upgrades and developments received a substantial investment of $660.3 million, there was no specific mention of endometriosis, including in the NSW 2024-2025 Gender Equality Budget Statement. This is an oversight considering endometriosis-related hospital admissions have risen over the past decade and that women are presenting to emergency departments with endometriosis symptoms at earlier ages (including 5.7 per cent of adolescents).

Fiscal support and infrastructure are much needed at various levels of government to make lasting change – but so does specific programming. Regardless of who holds power following the upcoming election, women’s health and endometriosis require greater priority in the form of financial investment.

3. Workplace entitlements and ongoing healthcare reform

There is a growing national conversation around workplace entitlements for endometriosis and other reproductive health needs. Under the Fair Work Act, as acknowledged by Safe Work Australia, people with endometriosis are entitled to reasonable adjustments – such as flexible working arrangements – to accommodate their often disabling symptoms. Failure for workplaces to provide reasonable adjustments for a disability can be a form of discrimination.

Yet, those with endometriosis may not recognise their condition as a disability, potentially being unaware of these entitlements. Many people with endometriosis are currently unsupported by existing workplace policies and use personal leave to manage their symptoms. Much remains unknown about institutional barriers preventing effective implementation of workplace supports. New initiatives to support people in the workplace are being developed but still need to be implemented and evaluated prior to being more widely available.

There has been slow progress at the federal level to implement workplace policy changes. Submissions to the 2023 Senate inquiry were supportive of formal reproductive health leave, but resulting recommendations were merely to consider commissioning work into the impact of reproductive health on workforce participation and the adequacy of existing leave entitlements. It remains unclear how the government will take this recommendation forward, but further action is needed. Including paid reproductive leave into the Fair Work Act would be a strong step forward, as recommended by a 2024 McKell Institute report. We suggest that more than one day per calendar month would be needed.

Since evidence suggests workplace flexibility and supportive supervisors increase workplace productivity and wellbeing, this will be an important element of policy and healthcare reform in the future. Slow action at the Commonwealth level has led to varied state-level responses. In Queensland, public sector workers now have ten days of reproductive health leave. Meanwhile, Victoria and South Australia have recently conducted inquiries in women’s pain and endometriosis respectively. National action is now needed that integrates lessons from such inquiries into health and workplace policy, as has been suggested by Endometriosis Australia.

4. Prioritising research and evaluation

Evidence-based research should inform policy and practice for improved endometriosis management. Yet, research into women’s health, including specifically endometriosis, remains underfunded, with evidence of a significant gender funding bias. For example, start-ups for erectile dysfunction, among other men’s health concerns, received US $1.24 billion globally in funding between 2019 and 2023, compared to just US $44 million for start-ups, including “FemTech”, that address endometriosis.

Even following the NAPE’s release in 2018, there has been slow progress in boosting research funding in Australia. Announced in 2024 by the Department of Health and Aged Care, $53.6 million was allocated to research in women’s health, chronic pain and alcohol use in Medical Research Future Fund opportunities. Yet only a modest $8.6 million was allocated to projects associated with chronic pain, of which endometriosis is just one.

Evaluating existing initiatives is critical to ensure that limited resources are properly distributed. Policymakers need to understand whether current investments are the most effective ways to improve the lives of those with endometriosis. For example, the Commonwealth’s initiative to establish endometriosis and pelvic pain clinics has been warmly received by the sector and the general public, however until there is an evaluation it remains unclear how effective these clinics will be at serving and supporting those with endometriosis and pelvic pain.

Next steps: Forward is forward, as long as we keep moving.

Collaborative, actionable work between all levels of government may be the key to unlocking crucial improvements in the way women’s health is managed and prioritised. Australia should continue to lead the way in healthcare reform, increased research funding and ongoing evaluation for effective investments into endometriosis diagnosis, management and treatment. This pragmatism must start with policymakers to ensure that women’s health remains a national priority regardless of who wins the election. Renewing the NAPE should be the next step to do this.

This article is published to mark Endometriosis Awareness Month in March 2025.

Dr Cristy Brooks is a research associate at the James Martin Institute for Public Policy, an associate lecturer in Interprofessional Health Science at Western Sydney University and an accredited exercise physiologist with Exercise and Sport Science Australia. She has a PhD in health science and has research interests in the prevention and management of chronic disease and chronic pain, and seeing academic research translated into real world impact.

Dr Amelia Mardon is a postdoctoral research fellow in reproductive health at NICM Health Research Institute, Western Sydney University. She has a PhD in pelvic pain and a research interest in the conservative management of endometriosis and pelvic pain, including pain education. Through her research she hopes to reduce the stigma associated with the pelvis and improve the wellbeing of those living with pelvic pain.

Associate Professor Mike Armour is Director of Research at NICM Health Research Institute. Mike has published over 120 peer reviewed articles on various aspects of women’s health including endometriosis, menstrual health literacy and primary dysmenorrhea. His research focusses on complex interventions to treat endometriosis and other forms of pelvic pain.

Image credit: Menshalena/Canva