Doctor education ‘highest priority’ for people with endometriosis

Anastasia Tsirtsakis

1/04/2022 3:53:33 PM

To help reduce the knowledge gap, a platform informed by doctors, researchers and people with the condition has been launched.

A female GP working on a laptop.
EndoZone has been co-designed with hundreds of people from around Australia who have endometriosis.

When it comes to endometriosis, the stats are sobering.
The chronic disease affects one in nine people who menstruate, estimated to be upwards of 830,000 Australians.
It occurs when tissue similar to that which lines the inside of the endometrium grows outside the uterus. While it most commonly affects the reproductive organs, it is also frequently found in the bowel and bladder, with symptoms including pelvic pain, fatigue and infertility.
Despite the onset often occurring in adolescence, research shows it can take anywhere between 7–10 years for people to receive a diagnosis.
Libby Trainor Parker understands the struggle firsthand.
Having suffered with debilitating symptoms since the age of 14, it took her 22 years to be diagnosed with endometriosis. But even then, she did not receive the support she needed.
‘I went through a lifetime of receiving diagnoses of mental health issues, anxiety and even surgery to remove a healthy appendix,’ Ms Parker said.
‘And when I was finally correctly diagnosed at 36 years of age, I was sent home with no information aside from a suggestion to “Google it”.’
To assist people like Ms Parker, and ensure they not only receive a timely diagnosis and support they need, a new digital platform called EndoZone has been launched this week.
Led by the University of Adelaide’s Robinson Research Institute, the platform has been jointly funded by the Federal Government and Jean Hailes for Women’s Health, and includes resources to not only support people with the condition, but also features information for those in their lives who support them and their health practitioners.
As part of the research conducted to set up the platform, 347 people with endometriosis were polled and the highest priority (29%) was for doctors to be better educated and improve their communication on the topic.
Dr Cecelia Ng, the National Endometriosis Science and Clinical Trials (NECST) Manager, was one of the representatives from Jean Hailes who co-designed EndoZone. She told newsGP a key driver of the project has been to respond to the knowledge gap that persists around endometriosis.
‘We just wanted an area where everyone could access information that was evidence based and was actually co-created by those that not only live with endometriosis, but those that treat it, and also those who do research in the area as well,’ Dr Ng said.
‘So it’s a consolidated effort to get information into one place.’
There are also plans to continue updating the platform in line with the needs of people living with the condition, and the latest evidence.
University of Adelaide Chief Investigator for the project Professor Louise Hull says this is in part what makes EndoZone particularly valuable.
‘The site has been built to learn,’ Professor Hull said.
‘So as more and more people use it, the site will respond by providing the information that is most relevant, and the site is informed by the latest research in the field, so that users can access current, evidence-based knowledge about endometriosis.’
While period pain is common, with as many as 92% of women in Australia reporting having experienced it, Dr Ng says if the pain is disrupting a person’s daily life that endometriosis should be a consideration for GPs.
‘GPs are a lot of the time that first port of call and that facilitation, particularly if it does get to a point where the patients need to see a specialist, to have that referral ready to go,’ she said.
‘Also, having a good pelvic ultrasound is quite important.
‘While we know that some of the endometriosis lesions, particularly the peritoneal lesions, can be hard to pick up on ultrasound, with some of the more severe disease where there are rectal nodules or ovarian endometriomas, they can be picked up, particularly from imaging services that are experienced in doing the particular pelvic ultrasounds to help pick up the endometriosis.’
The development of EndoZone is a three-year project, and represents the first Australia-wide consultation with people who suffer endometriosis.
Ms Parker, who since her diagnosis has dedicated a large part of her life to educating herself and others on the condition, believes the new platform is a ‘real asset’ with particular benefits for people who are isolated and live in rural and remote locations.
‘EndoZone will change things for people with endometriosis,’ she said.
‘It will empower endo patients, their supporters and health practitioners, and will build a much-needed community for the chronically ill.’
In an effort to continue adding to the knowledge base around endometriosis, the NECST Network has launched a clinical registry to recruit participants to provide insight on their experience with the disease and their diagnosis.
In addition to funding for the EndoZone platform, the Government’s 2022–23 Federal Budget includes $58 million for the improvement of diagnosis and primary care support for women with endometriosis, which includes the establishment of new specialised endometriosis and pelvic pain clinics.
While women have long-suffered with endometriosis, Dr Ng largely attributes the greater awareness and commitment from Government to strong patient advocacy.
‘That allowed the National Action Plan for Endometriosis to be developed back in 2018, which was the first of its kind,’ she said.
‘That provided a blueprint because it was a coordinated effort from patients, clinicians and researchers to really come together and identify the key gaps and then be guided by those.
‘And hopefully with that will come change; change in making management better and in understanding the research better so as to give us a bigger picture of what is really going on.’

endometriosis EndoZone women’s health

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