But there’s still room to improve, say advocates.
Despite a new report finding that around half the women in the ACT with diagnosed endometriosis or adenomyosis reporting that they were either “dissatisfied” or “very dissatisfied” with the level of care on offer, Australia is still ahead of the curve when it comes to treating the disease.
The report from the second Women’s Health Matters survey was released on Tuesday and looked at the self-reported health experiences of around 1300 women living in the Australian Capital Territory.
About one in five respondents indicated that they had previously been treated for endometriosis or adenomyosis.
Just 25% of the cohort that had been diagnosed or treated in the past two years said they were either “very satisfied” or “extremely satisfied” with their care.
Around 25% said they were “somewhat satisfied” with their care.
Speaking at an unrelated panel event on endometriosis hosted by the University of NSW last week, obstetrician and gynaecologist Professor Jason Abbott said Australia had come a long way in terms of endometriosis care over the past 30 years.
“We lead the world in this, make no mistake about it,” he said.
“We have an endometriosis action plan … we’ve got wonderful advocacy [and] lots of people know about endometriosis.
“It’s now taking those next steps [in understanding] the disease: what does it mean? How does it work? And how do we make it better for the next generation?”
One of the major issues, according to Professor Abbott, is that most of the current classification systems for endometriosis – of which there are roughly 22 in use – “suck”.
The most popular model, which was developed by the American Society for Reproductive Medicine, classifies endometriosis into four “stages” dependent on the number of lesions present.
However, disease symptoms and severity do not necessarily correspond to the number of lesions.
“I see a lot of people with ‘stage four’ disease who have no symptoms at all,” Professor Abbott said.
“They have babies, … their periods are moderately painful, but not too bad, they get by and they don’t come in.
“But they see me because they’ve had a scan, and someone’s said, ‘oh, you’ve got terrible endometriosis’.”
Often, he said, these patients are stressed and assume the ‘stage four’ aspect of the disease label is similar to how cancer is classified.
“This is not a cancer, it’s not going to kill you, but it makes you really miserable,” Professor Abbott said.
“It’s really shifting this mindset to say, ‘actually, let’s move away from the catastrophisation’.
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“Let’s think about a system that tells us about how it works rather than what it looks like, and that’s going to be a change that we need to think about in the future.”
Panellist Professor Bronwyn Graham, director of the Centre for Sex & Gender Equity in Health & Medicine at the George Institute for Global Health, told the audience that the narrative surrounding endometriosis could often be a disincentive for women to seek treatment for their symptoms.
“I waited for two years with symptoms before even talking to my GP about it, because I knew that it would take about seven years to get a diagnosis, right?” said Professor Graham, who lives with adenomyosis.
“It took two weeks, because my GP is wonderful. She’s a wonderful doctor.
“But I think it’s really important that, when we talk about this … yes, it can take a really long time to diagnose, [but] let’s not make that become a narrative and put off starting that process, because there’s obviously huge individual differences applying to diagnosis and the response to treatment.”
Looking to the future, Professor Abbott said he hoped to see a classification system for endometriosis which better fit people’s specific symptoms and expected clinical outcomes as well as a simplified pathway to diagnosis.
Even better, he said, would be the day where a non-surgical intervention was developed.
“The best thing that I can think of, as a surgeon, is to be done out of a job in the future,” he said.
“That’s my hope for the future: that I flip the burgers at McDonald’s, because I don’t need to be a surgeon.”
