Endometriosis diagnosis can take years - this tool helps GPs start management earlier

Australia's first national Endometriosis Management Plan (EMP) was launched this month to support the assessment and care of people with suspected or confirmed endometriosis or chronic pelvic pain (CPP). 

It brings the latest endometriosis guidelines into an online personalised care plan, helping GPs and their patients make decisions about treatment, symptom management, referrals and ongoing care to achieve better health outcomes.

The plan was developed by Monash University Researchers alongside the RACGP. Those involved in the creation of the EMP said given there is no known cure – and that endometriosis affects up to one in seven Australia women and girls up to the age of 50 –  effective long-term management of symptoms and their impact on everyday life was critical.

While it takes an average of eight years from the onset of symptoms to diagnosis, eligible patients with suspected endometriosis or CPP can now use the plan to begin managing their symptoms with their GP while they wait for a diagnosis.

Project lead Professor Danielle Mazza, Head of Monash University’s Department of General Practice, said it was designed to ensure patients with persistent symptoms were not left waiting for the next step in their care.

“Someone may have suspected endometriosis and be referred for further investigation or specialist care, but that doesn’t mean nothing can happen in the meantime,” she said.

“Symptoms can be complex, non-specific and vary from person to person. 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.

“Ultimately, we hope the EMP will help raise the standard of care for endometriosis and pelvic pain in general practice.”

The web-based document guides consultations around the symptoms that matter most to each patient and their individual goals.

It covers issues including pain, heavy menstrual bleeding, fertility and mental health, and provides guidance on treatment options, referrals, self-management and multidisciplinary care.

At the end of a consultation, doctors are expected to provide patients with a personalised digital or printed plan that can be reviewed and updated with their GP.

The EMP also helps clinicians consider multidisciplinary care, including allied health services such as physiotherapy for chronic pelvic pain.

Previous Monash-led research found the proportion of women attending Australian general practices with a documented endometriosis diagnosis almost doubled between 2011 and 2021, highlighting the growing role of GPs in endometriosis care.

RACGP President-elect Dr Ramya Raman said while pelvic pain management and women’s health were dealt with by GPs on an everyday basis, the EPM provided a framework to work from.

“The benefit of using this is much more GP-centric. For a busy GP who is wanting to look up resources to have the best outcome for their patients this is something to go to and reference,” she said.

Dr Raman said the variation of symptoms experienced by women contributed to the often years long timeframe for diagnosis. 

“For some instances women may not have any concerns until they start planning for a family, or have difficulties starting a family,” she said.

“We do have to take cultural context into consideration too, in some cultures menstruation and period pain is a taboo and not openly discussed. The challenge is we normalise that when, in fact, it is not normal and that is a barrier for seeking care or understanding this is a condition that would need treatment.”

Dr Raman welcomed the integration of personalised digital or printed plans for patients.

“A lot of preventative health and general practice care revolves around educating the patient and making sure they feel empowered in that consulting process to understand the condition so they can appropriately escalate their care, know what an appropriate treatment phase for them is, and what triggers some of these symptoms as well.”

The EMP is available online for clinicians and patients.