Endometriosis action plan follows decades of lobbying – and suffering

On Thursday the wheels of government proved they can turn quickly on occasion, as Greg Hunt released a national action plan on endometriosis.

That the long-ignored and debilitating condition – which costs the Australian economy $6bn a year – is now the target of a multifaceted plan is due in no small part to the women who have suffered from it.

At least one in 10 women of reproductive age are estimated to have “endo”, which occurs when tissue similar to the uterus lining grows outside the uterus, causing inflammation, pain, fatigue and, in some cases, infertility. Until recently many sufferers had no idea, or had been sold myths by undereducated GPs about how to treat it.

Nationwide campaigns and media coverage drew a genuine apology from the health minister last year, who said it was “long overdue” that the condition be brought out of the dark.

“On behalf of all of those in parliament and all of those who have been responsible for our medical system, I apologise,” Hunt said. “This condition should have been acknowledged at an earlier time in a more powerful way and will never be forgotten again.”

On Thursday he revealed the plan in Sydney, which “outlines a new approach to improving awareness and understanding of endometriosis, speeding up diagnosis, and developing better diagnostic and treatment options”.

Of the $4.5m in funding, $1m will resource a steering group to oversee the plan’s implementation.

On that steering group is Sylvia Freedman, who with her mother in 2015 successfully lobbied Bayer through a change.org petition to get a drug to treat endometriosis made available in Australia.

The campaign went viral and brought hope to thousands of women who until then thought they were suffering alone.

To harness all the attention they’d attacted, Freedman and her mother founded EndoActive Australia & NZ, and held conferences, organised events, and joined a coalition of support and advocacy groups, which caught the attention of federal MPs.

Gai Brodtmann, the Labor MP for Canberra, attended a Canberra march held by endo groups and posted her speech to Facebook.

She then began reading out the stories of women who had contacted her to parliament, “about misdiagnosis myths, operations, hysterectomies in their 20s, endless operations, lost opportunities, impact on mental health, the cost, the pain, and the daily struggle to take control of their lives”.

The stories, enshrined in Hansard, led to the Liberal MPs Nicolle Flint and Nola Marino joining her to create the bipartisan Parliamentary Friends of Endometriosis Awareness.

“It was set up in August last year with a very clear aim,” Brodtmann says.

“Both Nicolle and myself in former lives had been involved in community [work] … and we were very clear it wasn’t just a group that was set up to talk about the issue. We wanted to make change.”

They met with endometriosis groups and approached Hunt.

A roundtable discussion to develop a national action plan brought together dozens of delegates, who formed the Australian Coalition for Endometriosis – EndoActive, QENDO, Pelvic Pain Foundation of Australia, Canberra Endometriosis Network and Endometriosis Australia – to present a single advocacy voice to government.

“We had so many thoughts and plans that when the roundtable was planned, everyone already had a good idea about what the national action plan should look like,” says a steering group member, Prof Jason Abbott, who is a gynaecologist and the medical director for Endometriosis Australia.

“It happened very quickly but this is on the background of a lot of in-depth work from a variety of groups and professionals who have been working on it, sometimes for decades. We’ve been pushing for these things for a very long time.”

The plan is essentially a three-pronged approach to increase awareness and education, improve clinical management and care, and support further research.

While it may be difficult to quantify, the plan states its five-year goal is: “To see a marked improvement against the objectives of the National Action Plan, with indication of progress against the overarching goal of an improvement in quality of life for women, girls and other individuals living with endometriosis and chronic pelvic pain.”

One of the major problems with endometriosis is that the lack of awareness is not limited to the general public. There is a clear and identified need to improve the knowledge of endo among medical practitioners and healthcare professionals.

“The most common stories are that women are told the pain is all in their head, or that it’s just period pain and it’s normal,” Freedman says.” Endo is much, much more than that.

“Or to go and have a baby to cure your pain, which is mythical advice.

“One GP said to a [Canberra] woman with endo, to go and have a baby and when she said, ‘I don’t even have a boyfriend or husband so that’s a bit logistically inconvenient,’ he said, ‘Go to Civic, go to the pub and have a one-night stand, before you miss the boat.’

“That’s a GP obviously uninformed about endo, encouraging unsafe, unprotected sex with a stranger to cure pain and address a woman’s fertility problems.

“I’m sure most people’s experiences with the GPs aren’t that inappropriate, but lack of GP and healthcare professional education is a major, major issue.”

Brodtmann agrees. “We are well overdue for acknowledgement of this insidious disease; the physical cost, psychological cost, the professional cost, to these women and their families and loved ones,” she says.

The funding is small but supporters are careful to say it’s a good start.

“It’s still a relatively small pot of money compared to many other chronic diseases we’ve identified that get much better resourcing and understanding than ‘real’ diseases,” Abbott says.

“It’s important to note endo is just as ‘real’ as all those other illnesses … Further funding is absolutely going to be needed, and the government understands this is something that’s going to need to be resourced at state and federal level.”

The road to get here has taken its toll. Freedman and many others have tirelessly campaigned while also managing their own endometriosis.

“I was really sick but the effect it was having and the power I started to feel through sharing my story, I felt like I was sort of reclaiming endo as my own and it wasn’t owning me anymore,” she says. “That was really pivotal to me feeling physically better.”

Part of Freedman’s taking control included a masters in health communication, during which she wrote every paper about endo just so she could access all the literature for free.

“The more self-educated I became the more I understood about how I could manage it, but these things weren’t made available to any patients,” she says.

“That’s what kept spurring us on to have the events we held. I felt best-placed to pick what type of info patients need because I was a patient. I could see where the gaps are.”