The rate of endometriosis diagnosis within Australian general practice nearly doubled over a decade, a comprehensive new study reveals, highlighting a significant shift in the recognition of the debilitating condition. Research led by Monash University indicates that from 2011 to 2021, general practitioners identified the disease in a growing proportion of women, a trend that likely reflects heightened public awareness and improved diagnostic approaches rather than an underlying surge in the disease itself. The large-scale analysis tracked the medical records of nearly 20,000 women, offering a detailed view into how the condition is identified and managed in primary care settings across the country.
This substantial increase underscores a pivotal moment in women’s health in Australia, where one in nine women are affected by the chronic condition. While the rising diagnosis rates are a positive sign of improved awareness, the study also emphasizes the persistent difficulties that general practitioners face. Endometriosis presents with a wide and often complex array of symptoms that can mimic other conditions, making it notoriously difficult to pinpoint. Experts suggest that despite progress, the journey to diagnosis remains challenging, reinforcing the need for enhanced support systems, clearer clinical pathways, and continued education for primary care physicians who are on the front lines of identifying the disease.
A Decade of Detailed Data
The findings, published in the Medical Journal of Australia, stem from an extensive open cohort study conducted by Monash University’s SPHERE Centre of Research Excellence. Researchers analyzed de-identified electronic medical data from 19,786 women between the ages of 14 and 49 who received a first-time endometriosis diagnosis from their regular general practitioner during the 2011–2021 period. The data was collected from 660 general practitioners working in approximately 2,700 clinics, providing a robust and widespread sample of primary care encounters in Australia.
The core finding was a steady and significant rise in the annual age-standardized prevalence of the condition in these clinical settings. The rate increased from 1.78 per 100 women in 2011 to 2.86 per 100 women by 2021. This statistical trend provides concrete evidence for what advocacy groups and patients have long observed: the condition is becoming more visible within the healthcare system. The study’s lead author, Professor Danielle Mazza, noted that this robust analysis offers crucial insights that will help refine future strategies to improve both diagnosis and management of endometriosis in general practice.
The Shifting Diagnostic Landscape
A key factor in the increased rate of diagnosis appears to be a change in the tools GPs are using to investigate symptoms. The research highlights a major increase in the use of pelvic ultrasounds as a preliminary diagnostic tool. In 2011, practitioners requested a pelvic ultrasound for just 18.9% of women who were subsequently diagnosed. By 2021, that figure had climbed to 48.6%, indicating that GPs are now more than twice as likely to use this imaging technique when endometriosis is suspected. This shift toward non-invasive investigation is a critical step in identifying the disease earlier and more efficiently.
Historically, the delay in diagnosing endometriosis in Australia has been a significant burden on patients, with past estimates suggesting an average wait of seven to 12 years from the onset of symptoms. The new study indicates a potential improvement in this timeline. Among the women whose records were analyzed, the median time from the first documentation of a relevant symptom to the first documented diagnosis of endometriosis was 2.5 years. While this remains a long time for individuals suffering from chronic pain and other debilitating symptoms, it suggests that increased awareness and proactive investigation may be helping to shorten the diagnostic odyssey that many patients endure.
Symptoms and Patient Presentation
One of the greatest challenges for general practitioners is the varied and non-specific nature of endometriosis symptoms. Professor Mazza stated that women present to their GP with a broad range of issues, which can make it difficult for a doctor to immediately recognize the possibility of endometriosis. The condition can manifest in ways that are easily confused with other gynecological or gastrointestinal problems, leading to potential misdiagnosis or delays.
The study’s data provides a clearer picture of what these initial presentations look like in a clinical setting. Of the nearly 20,000 women diagnosed, two-thirds (66.7%) had at least one relevant symptom documented in their record prior to the official diagnosis. The most common symptom was pelvic pain, which was recorded for 40.8% of the women. The second most frequent was dysmenorrhea, or severe period pain, affecting 22.1% of the cohort. Other well-known symptoms include dyspareunia (pain during intercourse) and infertility, which affects up to 50% of women with the condition. The complexity and overlap of these symptoms underscore the need for GPs to have a high index of suspicion and the tools to investigate further.
Drivers of Increased Recognition
The study suggests that the rise in diagnoses is less about a sudden epidemic and more about a groundswell of recognition from both patients and clinicians. Researchers credit the tireless work of endometriosis advocacy groups for raising the profile of the disease across Australia. Public awareness campaigns and patient-led movements have empowered individuals to seek help for symptoms that may have been previously dismissed as normal menstrual pain. This, in turn, has encouraged health professionals to take these complaints more seriously.
This increased focus has been supported by national health initiatives. In 2018, the Australian government launched the National Action Plan for Endometriosis, a blueprint designed to improve awareness, clinical management, and research into the disease. The development of new management plans by organizations like SPHERE, in partnership with the Royal Australian College of General Practitioners (RACGP), is part of this coordinated effort. The funding for these programs from the Australian Government Department of Health is intended to create a more supportive and effective healthcare environment for the more than 830,000 Australians diagnosed with the condition by age 44.
Challenges Remaining in Primary Care
Despite the positive trend in diagnosis rates, significant hurdles remain for general practitioners. Qualitative research conducted with GPs in Western Australia identified several key challenges in diagnosing and managing endometriosis effectively in a primary care setting. These challenges fall into distinct but related categories.
Eliciting Complex Symptoms
Participants in the qualitative study reported immense difficulty in eliciting the necessary information from patients to form a diagnosis. The symptoms are often multiple and complex, and patients may not connect seemingly disparate issues. This is complicated by the time constraints of a typical GP appointment, which may not be sufficient to unravel a long history of intermittent or cyclical symptoms. Clinician experience and awareness also play a huge role; doctors with more exposure to the condition are better equipped to ask the right questions and identify patterns that suggest endometriosis.
System and Service Gaps
GPs also face systemic challenges. Many reported a need for clearer, more pragmatic diagnostic guidelines and better access to specialist services for referral. When a referral is needed, wait times to see a gynecologist can be long, further delaying definitive diagnosis and management. The Monash study echoes this concern, with Professor Mazza emphasizing, “We need to provide support to GPs so they are better able to identify and manage endometriosis. There is more to be done.” Improving these pathways and fostering collaborative care models between primary care and specialists is seen as essential for reducing the burden on both patients and the healthcare system.
