New endometriosis tool puts women at the centre

For many women like Florrie Dixon, it takes years to get a diagnosis of endometriosis. And symptoms of the condition get dismissed along the journey.

“It took a really long time to get my diagnosis and to realise that the way my period was presenting wasn’t normal,” says Florrie.

“There were … times where it was so painful or so heavy that I couldn’t leave the house.”

The 25-year-old recalls the many times doctors told her that her periods were probably “just different” and something she’d have to learn to live with.

“It was kind of hard to get people to believe you,” she says, adding the fear of not being taken seriously “created quite a lot of health anxiety”.

While Florrie’s story is not unique, it will hopefully become less common with the launch of a new tool – the Endometriosis Management Plan (EMP).

Developed by Monash University and the Royal Australian College of General Practitioners (RACGP), the EMP will help health professionals assess and manage symptoms, address patient goals, and provide referrals and ongoing care. And it will help women who have – or think they may have – endometriosis or chronic pelvic pain to manage their condition with their doctor or nurse.

“What we know from past research is that there’s not many women with endometriosis or chronic pelvic pain in Australia who have a GP Chronic Condition Management Plan,” explains Dr Sharinne Crawford, Senior Research Fellow at Monash University and EMP project manager.

The EMP, she says, is designed to fill that gap. “This is really important because it’s not only acknowledging symptoms, but it’s giving people a way to manage those symptoms to hopefully reduce the impact on their daily life.”

Driven by evidence

The EMP incorporates Australian clinical guidelines and puts the patient at the centre. It was also developed with input from clinicians, patients and consumer advocacy groups, including Jean Hailes for Women’s Health.

“When we pilot-tested the EMP in clinics for 6 months and talked to patients afterwards, what we heard is that it really opened up 2-way communication with the GP,” says Dr Crawford. “They really felt heard and very involved in the decision making.”

While the tool is patient-focused, it’s also designed to support health professionals.

“There are some clinicians who are women’s health specialists who know a lot about endometriosis and chronic pelvic pain, but there are many clinicians who see patients with these symptoms or conditions that are less experienced and less confident,” says Dr Crawford. “This kind of management plan helps to provide a lot of structure and guidance for those clinicians.”

How the Endometriosis Management Plan works – and how to get one

The EMP focuses on symptoms the patient is experiencing and provides treatment and referral options. It also includes patient resources relevant to the person’s symptoms and captures their goals and priorities.

To get an Endometriosis Management Plan, visit your doctor and ask about having an EMP completed if you have endometriosis or chronic pelvic pain-related symptoms.

The EMP is funded by the Australian Government and freely available to doctors and nurses through the RACGP website.

It “may or may not lead to a diagnosis,” says Dr Crawford. “But it’s more about symptom management.”

“One of the things that the research tells us, including some of the research that we’ve done with people with these conditions, is that their symptoms have been dismissed and normalised for so long.

“With this Endometriosis Management Plan, what we’re doing is we are getting clinicians to acknowledge the symptoms that women are facing and take these symptoms seriously.”

The Endometriosis Management Plan project was funded by the Australian Government, Department of Health, Disability and Ageing, and delivered by Monash University (through the SPHERE Centre of Research Excellence) and the Royal Australian College of General Practitioners. For more information about the EMP, visit endometriosismanagementplan.org