A new, national initiative designed to improve diagnosis, care and long-term management of endometriosis has launched this week, in a move that’s designed to improve outcomes for women long let down by the health system.
The Endometriosis Management Plan (EMP) is Australia’s first nationally available, structured management plan for endometriosis in primary care, supporting people living with endometriosis to partner with their GP or nurse to manage their condition.
The EMP is a significant milestone for women’s health and comes amid a growing recognition of long-standing gaps in recognition, diagnosis, coordination and consistency of care for endometriosis.
Endometriosis is a chronic condition where tissue similar to the lining of the uterus grows outside of the uterus. It causes inflammation, scarring, and often intense pain, affecting one in seven Australian women and individuals assigned female at birth by age 50.
In Australia, diagnosis can take up to eight years, with people often experiencing inadequate or dismissive care during this time.
Project Manager Sharinne Crawford, tells Women’s Agenda the EMP is designed to give clinicians more structure in consultations to help improve outcomes for patients.
“We understand that in the past endometriosis and chronic pelvic pain hasn’t been well understood by some clinicians and has not been well diagnosed or managed,” Crawford said.
“So the Endometriosis Management Plan is hoping to change that, by giving clinicians more structure to a consultation.”
It’s also a way for women to have their symptoms recorded and acknowledged, enabling the development of a personalised, structured care plan tailored to an individual’s symptoms, priorities and goals.
“That’s been something that has been missed in a lot of healthcare,” Crawford says.
“We’ve heard from lots of women who’ve said they’ve felt very dismissed, and their symptoms have been normalised by clinicians, and so the endometriosis management plan really hopes to change that because we have a way of recording the symptoms that are most impactful.”
The EMP project has been led by Monash University and delivered by researchers from the SPHERE Centre of Research Excellence. It was developed as part of a three-year project funded by the federal Department of Health Disability and Ageing.
‘It took me 20 years to get a diagnosis’
It took Jessica Ison 20 years to get an endometriosis diagnosis, a moment that came after what she describes as “very significant” advocacy for herself. There were many years where Ison says she felt dismissed, with multiple doctors who treated her poorly and told her that her symptoms were not real.
“I’m a highly educated white woman who lives in the metropolitan area,” Ison tells Women’s Agenda.
“If I was any other woman, I would be even more dismissed… and gender diverse people wouldn’t even get a look in. [It’s time for the medical system] to start listening to us and believing us.”
Ison describes the pain she’s felt from endometriosis as “like a white hot grid inside your pelvis” saying she’s been through times of “absolute agony”.
Ison’s experience is not uncommon in Australia, where endometriosis has been historically underdiagnosed and undertreated, as is the case in many parts of the world.
The moment Ison was believed for the first time by a doctor was a milestone she won’t forget. This specialist scheduled Ison for surgery, which she had to wait a year for, but it ended up confirming she did indeed have endometriosis.
Ison says the recognition “felt amazing”, but at that point she was also so exhausted and angry after years of feeling dismissed.
It’s this kind of experience the EMP is designed to help improve. It was co-designed with people with lived experience of endometriosis, as well as stakeholders and primary health clinicians.
The EMP is interactive and aligned with the latest evidence-based diagnosis and management guidelines, aiming to reduce fragmentation of care and support patients to feel informed and supported.
“The EMP is completed by the clinician, but with the patient, and so it’s really about a shared decision making setting,” Crawford explains.
“Patients can set their own goals, and it’s aimed at supporting self-management, but also evidence-based management and treatment.”
For women looking to access the EMP, the first step is to check in with their GP, who will have access to it nationally on the Royal Australian College of General Practitioners website.
While there is not yet a cure for endometriosis, treatment options reflected in the EMP include medication, and other evidence-based interventions including pelvic physiotherapy, counselling and diet, as well as surgery for some.
For Ison, it represents a new chapter for endometriosis care, one she hopes other people will benefit from.
“Hopefully this gives a good strategy for [medical professionals] to actually listen to us and believe us and help us navigate the system,” she said. “and that we don’t have to do as much of that research ourselves.”
“The lifelong impacts of disbelieving women’s pain is really profound, so it’s a really deep crisis.”
You can find out more about the Endometriosis Management Plan and how to access it here.
Funding for this project was provided by the Australian Government, Department of Health, Disability and Ageing. The Endometriosis Management Plan project was delivered in a partnership between Monash University, (through the SPHERE Centre of Research Excellence), and the Royal Australian College of General Practitioners.