Back in 2017, Health Minister Greg Hunt issued a rare apology to Australian women.
He directed it towards the one in ten who suffer from endometriosis, noting that the condition should have been acknowledged at an earlier time. In a much more powerful way.
His apology came on behalf of all those in parliament and from the medical system.
The apology, during an Endo Active event in Canberra, featuring a number of different advocacy groups and “Endo Warriors” in the room, marked a major turning point for those who suffer from endometriosis in Australia.
Because previously, endometriosis had gone largely ignored or overlooked.
On this week’s Women’s Health Project, we’re exploring endometriosis in Australia: how far we’ve come, and the very long way we have to go.
It takes an average six and a half years for someone to be diagnosed with endometriosis. And even that is an improvement: that figure is down from an average seven to 12 years a decade ago.
It wasn’t so much that women suffered in silence. But rather that they just suffered, with no real answers or explanations for what was going on. Worse, they were and continue to be told to toughen up and get resilient. That periods are pain, deal with it. As entrepreneur Shivani Gopal told me, it took her half her life to finally get a diagnosis. So often, she said, this type of pain is just “normalised”, when it isn’t normal.
But that’s changing. There have been a number of high-profile spokespeople, like Emma Watkins (AKA the yellow Wiggle) and more recently Amy Schumer, speaking up about their experiences.
And there’s been some powerful work from advocacy groups to get this issue on the national agenda.
Ten years ago, Donna Ciccia co founded Endometriosis Australia, committing her life and career to advocacy work in this space.
For Donna, she started experiencing symptoms at age 16, but it was until she was 31 that she was finally diagnosed.
“It was always said to us that we were hypochondriacs, that it was period pain, you just need to harden up. It’s all in your head. Every woman has period pain. You need to harden up, you’re just not resilient.
Endometriosis goes so much further than the disease. So much further than the pain, which is hard enough to deal with or comprehend.
That’s why Endometriosis Australia uses the term Endo Warriors: to highlight how it impacts so many other areas of life – leaving those who suffer to do so with remarkable resilience. Their careers are impacted, their friendships, their relationships, their financial situations.
According to just-released research by Endometriosis Australia, one in six sufferers have lost jobs due to endometriosis. One in three say they have been passed over for promotion. And seven in ten have had to take time off work.
But there has been some progress in this space. There’s federal funding as part of the National Action Plan. There are the clinical guidelines issued by RANZCOG and delivered to GPs across the country, to help them better understand endometriosis and give those they suspect of having it a clinical pathway forward.
“We have come along way. Is there still further to go? Absolutely,” Donna says.
“Research is key. We don’t know what causes it. We don’t know how to prevent it. We don’t know how to cure it. We have no early detection test.
“There is a whole heap of gaps that we need to fill, so research is vital and investment in research is vital.
“Can we do better? We can always do better.
“Do we need more?
We need a bucketload more. When you think there are 830,000 people in Australia, that’s huge.”
Gynecologist Dr Talat Uppal also agrees we’ve come a long way. She says she’s personally seen a shift in her work around women seeking answers, including young women and girls.
“I’m sure there’s still room for us to do better as clinicians and for us, for women to feel more confident to reach out for help.
“But truly, I feel that we can actually see visibly the benefits of the highlighting of the [issue[ and raising awareness.
“The national plan that was created a couple of years ago, which focused on the actual awareness and education, as well a the clinical context is making a difference. The more you try to standardize clinical care, it makes it easier is, especially when we’re thinking of women in rural areas or in more vulnerable women, perhaps they don’t speak English or may not be able to access those resources. This makes it easier.
We explore this and much more in the latest episode of The Women’s Health Podcast.
Listen below, or go to iTunes or Spotify to get this episode and others in this special series investigating how women’s health has been sidelined and overlooked.
The Women’s Health Project, a special podcast series created by Women’s Agenda and supported by Organon, the recently launched pharmaceutical company dedicated to a better and healthier every day for every woman.