Clinical understanding of endometriosis has evolved significantly over the last decade. Once thought to be an idiopathic disorder of female maturity,¹ earlier theories proposed embryological origins or transtubal regurgitation.² Today, endometriosis is recognised as a hormone-mediated disease, though we cannot accurately predict who will suffer from the disease. Some patients report little to no pain despite having extensive disease found during laparoscopy for alternate indications. Others experience chronic, debilitating pain.

The burden of disease in Australia is considerable. In 2024, endometriosis was estimated to cost the Australian economy $9.3 billion, not including Medicare expenditure on medications, surgical management, and fertility treatment.^3,4 In response, the Australian Government has committed $573 million to women’s health initiatives.⁵

However, this money can only be put to good use if we understand where the biggest deficits are in terms of our diagnosis and management of endometriosis, as well as our knowledge of the disease itself, and if we optimise the resources we already have.

Global History of Disease

Endometriosis was first described in 1690, when German physician Daniel Schroen, described ‘peritoneal ulcers’ in sexually mature females.^6-8 This definition, of course, overlooks the key characteristic of endometriosis; that stromal tissue resides outside the uterus.⁹

This key description came in 1860, when Austrian pathologist Carl Freiherr von Rokitansky identified tissue resembling endometrial glands outside the uterus.¹, ^9-11 He correctly identified that endometriotic tissue invades the muscular wall of the uterus.¹² However, some of his interpretations, including his classification of ovarian endometriomas as sarcomas, reflect the limited understanding of the time.

Theories on the pathological basis of endometriosis emerged in the late 19th century. Freidrich von Recklinghausen proposed an embryological explanation origin of endometriosis suggesting endometriotic lesions derived from remnants of the Wolffian duct.^{11, 13}

Shortly after, Canadian surgeon Thomas Cullen provided a clinical picture of endometriosis, listing the key symptoms as ‘severe pain in the lower part of the abdomen’ and ‘menstruation that lasts beyond two weeks.¹⁴

The term ‘endometriosis’ was introduced in 1927 by Dr John Sampson who proposed that endometriotic tissue is transmitted to the abdominal cavity via regurgitation of the uterine tubes during menstruation.² The fact that this regurgitation only occurred during menstruation underpinned what we now recognise as the hormonal theory of endometriosis; that it is an oestrogen-dependent condition. This led to the widespread advice that pregnancy would provide good symptomatic management in endometriosis. He also identified chocolate cysts – ovarian lesions filled with old blood, which are a characteristic feature of endometriosis.

Sampson is also responsible for identifying that endometriosis is responsible for infertility in many women, ¹⁵ sparking long-standing advice that women diagnosed with endometriosis should have children early to preserve fertility. ^{18, 19}

Sampson also reported that total hysterectomy provided a substantial symptomatic benefit for patients, though this was not amenable to many patients of childbearing age.¹⁷ Despite these early insights, our understanding has progressed minimally since the 1940s. While we now recognise endometriosis as an inflammatory condition capable of affecting distant sites including the abdominal and chest cavities, key questions remain unanswered. We cannot yet reliably predict who is at risk of developing endometriosis, nor have we developed preventative strategies – after all, how can we prevent a disease that we do not understand?

The answer to why a commitment to developing further knowledge and educating patients about endometriosis never happened in the 20th century is multifactorial, wrapped up in entrenched sexism and dismissal of women’s health concerns, and frankly, is a PhD topic of its own.

Medical Perspectives of Endometriosis in Australia

In Australia, endometriosis was historically viewed as a barrier to fertility. When it first appeared in national media in 1949, a Catholic Weekly article cited a US women’s health conference blaming the ‘hectic pace of the modern woman’s life,’ for the rise in cases of endometriosis, and infertility.²⁰ The article then went on to state that ‘delaying the normal function of childbearing’ through contraception was responsible for the disease, and that pregnancy was the only viable non-surgical treatment option.²⁰

This narrative persisted into the 1970s, where media coverage continued to focus on fertility.²¹

Diagnosis

Diagnosis has always been a major barrier for individuals with endometriosis. Until the introduction of laparoscopic gynaecological surgery in Australia, diagnostic options were included laparotomy, or transvaginal ultrasound, neither of which have a perfect diagnostic yield for the condition.²² Throughout the 1900s, diagnosis was almost always made to explain a patient’s infertility, and not due to unexplained pelvic pain that so many with endometriosis experience.

The introduction of laparoscopy in the early 1960s, and laparoscopic hysterectomy in 1989 revolutionised the diagnosis and management of endometriosis in Australia.²³ The prospect of a minimally invasive procedure in which patients could be both diagnosed and managed was far more appealing to patients than open laparotomy. It quickly became the gold standard for diagnosing endometriosis, though it still remains highly invasive, and only takes place after transvaginal ultrasound, which is not diagnostically perfect, especially in deep endometriosis.24 Many individuals have therefore been faced with a difficult choice: have invasive surgery with a recovery time of 4-8 weeks or go without a diagnosis. It was this choice that is seen to have led to the average diagnostic delay of 6.5 years.

Recent shifts toward non-surgical diagnosis have been supported by evolving clinical guidelines. RANZCOG’s 2021 Australian Endometriosis Clinical Practice Guideline (Foundation Guideline) recommended pelvic MRI as a second-line investigation following transvaginal ultrasound, instead of laparoscopy.²⁵ The Australian Living Evidence Guideline: Endometriosis launched in May 2025, further promotes early, primary care-based diagnosis and treatment. Specialist imaging techniques, such as the deep infiltrating endometriosis ultrasound has also allowed women to avoid surgery but remains cost prohibitive.

Finally, the RANZCOG Australian Living Evidence Guideline: Endometriosis advocates for primary care providers to empower themselves in managing endometriosis. Free eLearning modules and diagnostic flowcharts are amazing resources that have been created to build confidence among primary care providers in recognising endometriosis and initiating treatment.⁴

Treatment

For much of the 20th century, pregnancy was widely promoted as a viable symptomatic treatment for endometriosis, following Sampson’s proposal in 1949.²⁶ It was believed that by ceasing menstruation, pain would resolve. In 1959, the induction of a ‘pseudopregnancy’ through contraception was suggested by Dr Robert Kirstner, a prominent Australian gynaecologist.²⁷

This belief persisted well into the 21st century. It was not until 2018 that the Human Reproduction Update challenged this myth, highlighting the lack of uniformity in the behaviour of endometriosis in pregnancy, as well as the lack of a precise understanding of the pathophysiology of endometriosis which could underpin the prescription of pregnancy as a treatment option.²⁸ Even so, a 2023 Australian study showed that nearly half of people with endometriosis had been advised by a healthcare provider to “have a baby” to manage their pain.²⁹

Fortunately, treatment options have expanded in the last decade. The RANZCOG Australian Living Evidence Guideline: Endometriosis outlines a pathway for medical management of endometriosis with hormonal contraceptives, as well as gonadotropin-releasing hormone (GnRH) agonists.⁴ In May 2025, Ryeqo was added to the PBS, offering a new option to those with persistent symptoms.

The Guideline promotes early intervention by general practitioners to prevent progression to advanced disease requiring surgery. It also emphasises a multidisciplinary approach to care, including input from GPs, fertility specialists, physiotherapists, psychologists, and gynaecologists, to manage the full biopsychosocial impact of endometriosis.

From Neglect to National Recognition: The Interplay Between Advocacy and Government Action on Endometriosis

Having outlined the long and arduous tale of how endometriosis has evolved from being a poorly understood and managed pathology, to a pathology that can be further demystified, but whose management is now underpinned by evidence-based guidelines, the question begs as to how we got here.

Endometriosis Australia 30, established in 2012, catalysed national conversations around endometriosis, aiming to reduce diagnostic delays, and provide better resources for persons presumed female at birth (PFAB) living with the condition. Working with QENDO ³¹, they played a pivotal role in the development of Australia’s National Action Plan for Endometriosis, launched in 2018.

Since then, both organisations have continued to advocate for awareness, education, and support. QENDO has broadened its focus to include related conditions like adenomyosis, polycystic ovary syndrome (PCOS), and chronic pelvic pain. Their community initiatives include substantial outreach work, through a peer mentor program, support line, and the QENDO App — a free tool for symptom tracking, menstrual monitoring, and resource sharing. Users report fewer emergency presentations and a greater ability to advocate for themselves in healthcare settings.

These efforts have empowered individuals with endometriosis to better manage their condition and reduce feelings of isolation, while building community resilience and capacity for self-advocacy.

In response to advocacy from these groups and people living with the disease, the Australian Government has made a significant investment in endometriosis and broader women’s health. Key initiatives include:

• Australian Endometriosis Clinical Practice Guideline (2021) and Living Evidence Guideline (2025), developed by RANZCOG with government funding
  $58.3 million allocated in the 2022–23 federal budget to establish specialised pelvic pain and endometriosis clinics
• Subsidised 45-minute consultations for endometriosis diagnosis and management
• Integration of endometriosis priorities into the National Women’s Health Strategy (2020–2030)

While these commitments mark important progress, a notable gap remains, requiring long-term investment in research and preventative strategies. Without targeted research funding, the ability to understand and prevent endometriosis remains limited.

Conclusion

The diagnosis and management of endometriosis has come leaps and bounds since the days of ‘peritoneal ulcers.’ A new degree of sophistication has been brought to women’s health through the long-term commitments of organisations and the Australian government. Their efforts to provide evidence-based resources to both patients and healthcare providers aim to reduce the long-standing diagnostic delay and improve access to effective treatment.

However, what is missing from this outline is a firm commitment to research. The pathophysiology of endometriosis remains poorly understood, and our current knowledge does not match up to the potentially devastating impact that the disease can have on those affected — particularly regarding chronic pain, heavy menstrual bleeding, and fertility challenges.

Despite greater access to diagnosis and treatment, there can be no hope for preventative medicine in this space, until the root cause of endometriosis is better understood.