The 700,000 Australian women with the "insidious" disease endometriosis will no longer have to "suffer in silence", with the federal government releasing a national action plan that acknowledges its "historic failures" and charts a path to a cure.
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Health Minister Greg Hunt will launch the National Action Plan for Endometriosis, which seeks to reduce the delay in diagnosis, boost public awareness, and educate teachers, doctors and employers about the crippling disease.
"Many have suffered in silence for far too long, enduring diagnostic delays of between seven and 12 years on average and experiencing poor clinical care, due to a low level of understanding," Mr Hunt said.
"This plan is extremely important. It addresses a historic gap and something that often causes debilitating pain and can lead to mental health complications, social and economic stress and infertility."
The government will plough an extra $1 million - on top of the $3.5 million already committed - to ensure the plan is executed successfully.
About $2.5 million will be spent on establishing the National Endometriosis Clinical and Scientific Trials Network, which will allow patients for the first time to actively participate in research that aims to find better diagnostic options and treatments.
Often dismissed as "bad period pain", endometriosis is a condition where cells similar to those that line a woman's uterus grow in other parts of the body, in some cases strangling and gluing together other organs, causing excruciating pain and mental anguish.
The plan acknowledges the condition has been "hidden for too long", is a substantial health burden, and may be more common than breast cancer, prostate cancer and diabetes.
It says endometriosis costs the Australian society $7.7 billion each year - two-thirds from lost productivity and the rest from direct healthcare costs.
It debunks myths such as "having a baby will ‘fix’ endometriosis" and "a hysterectomy will cure the disease", which are still perpetuated by some doctors today.
Some key actions include making sure the word "endo" enters the public vernacular, updating school curriculums, creating free "resource kits", developing national clinical guidelines, and releasing a targeted call for endometriosis research through the Medical Research Future Fund.
The plan doesn't specifically address other related, poorly understood conditions such as adenomyosis and polycystic ovary syndrome, but it says there is potential to broaden the scope where appropriate.
"This is a moment of hope," Mr Hunt said. "I am open to [providing more funding]."
A steering group, which includes Melbourne University's Peter Rogers and EndoActive co-founder Sylvia Freedman, will oversee the implementation of the national action plan. A review will be conducted in five years' time with smaller checks in between.
One in 10 women have the painful disease and although there is no cure, there are treatment options.
Ms Freedman, who suffered "invisible" pain for 10 years before being diagnosed at 21, said 2017 was a pivotal year, with five groups - EndoActive, Qendo, Endometriosis Australia, Pelvic Pain Foundation and Canberra Endometriosis Network - forming a coalition to better drive change.
"I have every hope that everything in this plan gets implemented and gets adequate funding," she said.
"I lost jobs because of endo; the thing about having an invisible chronic illness is that people can't see it, so you might look fine but on the inside you're feeling awful."
Endometriosis Australia's Donna Ciccia was 16 when she first felt horrible pain but wasn't diagnosed until 31. Getting treated early can make a world of difference.
"I don't want another woman to go through the delay in diagnosis and challenges," she said.
"This is a big step in the right direction to help the next generation not go through what I did."
Professor Rogers, who is leading Australia’s largest study, involving 800 women, said the causes of endometriosis were unclear.
"Research is the key to unlocking our understanding of what causes endometriosis and therefore finding better ways to diagnose and treat this disease,” he said.
“This includes understanding the drivers for pelvic pain and establishing why existing treatments work for some women but not others.”
Labor MP Gai Brodtmann, an Endometriosis Australia ambassador, said many sufferers felt alone, frightened and powerless.
"The action plan was shaped by the endo community for the endo community," she said. "We now have to make the conversation on endo louder, broader and everyday."
