Australia’s first national Endometriosis Management Plan aims to transform care
Endometriosis affects an estimated one in seven Australian girls, women and individuals assigned female at birth by the age of 50, yet many continue to face significant barriers to timely diagnosis and effective care.
To help address these challenges, the Endometriosis Management Plan (EMP) was recently launched to provide Australia’s first nationally available, structured approach to endometriosis management in primary care.
Endometriosis is a chronic condition in which tissue similar to the lining of the uterus grows outside the uterus, commonly on pelvic organs and surrounding tissues. This can lead to inflammation, scarring and persistent pain. Symptoms may include pelvic pain, heavy or irregular menstrual bleeding, fatigue and fertility challenges.
Although there is currently no cure for endometriosis, early diagnosis and effective management can help reduce symptoms, minimise complications and improve quality of life. However, diagnosis can take up to eight years in Australia, with many people experiencing delayed or fragmented care during that time.
Project lead Professor Danielle Mazza AM, Head of Monash University’s Department of General Practice and Director of the SPHERE Centre of Research Excellence, said the EMP was designed to support patients and clinicians in navigating what can be a complex and often misunderstood condition.
“We want patients to understand their condition, know what their options are and have a clear management plan they can return to and review with their GP, rather than feeling there is nowhere to turn,” Professor Mazza said.
“Ultimately, we hope the EMP will help raise the standard of care for endometriosis and pelvic pain in general practice.”
Historically, endometriosis has been underdiagnosed and undertreated, often resulting in significant physical, emotional and social impacts.
The condition can disrupt education, employment and relationships, affecting quality of life and wellbeing. Many people also report having to repeatedly explain their symptoms and medical history across multiple healthcare providers.
The EMP was developed in response to these longstanding challenges. The evidence-based initiative, integrating clinical guidelines, supports people living with endometriosis to work in partnership with their GP or practice nurse to better manage their health through a personalised care plan tailored to their symptoms, priorities and goals.
The plan addresses issues including pain management, heavy menstrual bleeding, fertility concerns and mental health. It also outlines treatment options, referrals and agreed actions that patients can take to support their health outcomes.
Reflecting a holistic approach, the EMP incorporates medication, evidence-based non-drug interventions such as pelvic physiotherapy, counselling and dietary support, as well as surgery where clinically appropriate. By bringing these elements together within a single framework, the plan aims to improve care coordination, continuity of care and shared decision-making.
Florrie, aged 25, who has lived with endometriosis pain for nearly a decade, said feeling heard by healthcare professionals can make a profound difference to patients’ experiences. “I think if just one medical professional had said, ‘Look, I hear you, I understand this is really hard for you and I want to help you,’ that would have made such a difference,” Florrie said.
“I think it would be amazing if you could go into the doctor and come out with an answer.
“It would have stopped a lot of visits and a lot of time going back and forth. It would have also stopped a lot of pain and a lot of feeling misunderstood. Just being believed and feeling heard would have changed so much.”
Importantly, the EMP was co-designed with people with lived experience of endometriosis, alongside primary healthcare clinicians and key stakeholders.
Patients receive a digital or printed copy of their completed plan, which can be saved to their medical record and reviewed over time as needs change.
The initiative is also supported by practical resources for primary care, including management pathways, point-of-care resources and patient information materials.
Led by researchers from Monash University’s SPHERE Centre of Research Excellence in partnership with the Royal Australian College of General Practitioners, the EMP was created through a three-year project funded by the Australian Government’s Department of Health, Disability and Ageing.
As Australia’s first national endometriosis management plan, the EMP represents an important step towards earlier diagnosis, more coordinated care and improved outcomes for people living with endometriosis.
Funding by the Australian Government, Department of Health, Disability and Ageing. Delivered by Monash University, SPHERE Centre of Research Excellence, and the Royal Australian College of General Practitioners.
Consumers: www.endometriosismanagementplan.org
Q and A: Endo-MP
