Teaching schoolchildren about pelvic pain will form part of a proposed national plan to tackle endometriosis, the debilitating condition that affects hundreds of thousands of women.
The health minister, Greg Hunt, will push the states and territories to commit to the plan, which was discussed at Friday’s Council of Australian Governments [Coag] meeting in Sydney. The draft plan is being developed in collaboration with a coalition of endometriosis advocacy and research organisations.
Guardian Australia understands Hunt will in particular be asking the states to incorporate information about pelvic pain, menstruation and endometriosis into health and sex education in schools, to aid earlier diagnosis.
In December, Hunt issued a national apology to the estimated 700,000 Australian women and teenagers suffering from endometriosis, a progressive, chronic condition where cells similar to those that line the uterus grow in other parts of the body.
At a news conference in Sydney on Friday afternoon, Hunt said the disease was a “personal, passionate” cause.
“Our task now, through the action plan and through the work of the professionals, is to ensure that the doctors have the information that they need to assist with each diagnosis,” he said. “And that patients, women who are suffering endometriosis and who may not know that’s what they have, have the confidence to seek that diagnosis and not to suffer in silence.”
Studies suggest endometriosis affects at least one in 10 women of reproductive age, but awareness of the condition is low among health professionals and the public, and research is scarce, leaving women receiving useless or harmful surgeries or treatments that can affect their quality of life and health.
There is an average eight- to nine-year diagnostic delay, and treatment options are limited. There is no cure. Common symptoms include severe period pain, heavy bleeding, bladder and bowel problems, and compromised fertility. These symptoms often lead to mental health problems, relationship difficulties and workplace issues.
Dr Susan Evans, a gynaecologist and specialist in pain medicine, also chairs the Pelvic Pain Foundation of Australia, one of the organisations contributing to the national plan.
She welcomed the federal government’s commitment to the issue.
“There is now recognition of the problem women have even getting a diagnosis, because it’s a condition you can’t see and that scans don’t show. Women need to undertake the significant step of undergoing surgery, called a laparoscopy, to diagnose it, which itself carries risks.
“And undoubtedly, women’s pain in general hasn’t received as much attention as it should have,” she said. “When there is a condition that isn’t easily seen or measured it’s easy to discount pain. And even a laparoscopy can’t paint a whole picture of a women’s suffering because the condition can affect so many of her organ systems and areas of her life.”
The medical director of the Endometriosis Australia Association, Prof Jason Abbott, said a key aspect of a national plan would be educating schoolchildren about the signs of endometriosis and about pelvic pain.
“It’s really important girls and boys understand about menstrual and reproductive function and what’s normal and abnormal, as it often starts in young girls when they first get their period,” Abbott said.
“This is a condition that will attack women during their early stages of reproductive life and carry on for the rest of their reproductive life, and the earlier it is recognised and the sooner education is rolled out in schools, the better.”