Women who have spent years navigating the health system seeking care for extreme pain say they are frustrated at the slow pace of a government inquiry into the issue.<\/p>\n
Victoria’s Labor government announced the country’s first inquiry into women’s pain in early 2024, but more than a year later, its release is overdue.<\/p>\n
In January last year, Premier Jacinta Allan promised the report would be finalised by the end of 2024.<\/p>\n
“Time matters,” said Marina Kyriakou, founder of the Fight Endo Foundation.<\/p>\n
“It’s not right to live in pain, it’s not normal, unfortunately that’s what these women face at the moment.”<\/p>\n
<\/p>\n
Marina Kyriakou waited more than 20 years for her pain to be diagnosed as endometriosis. (ABC News: Tara Whitechurch)<\/p>\n
The inquiry’s findings and recommendations were due to be made public early this year.<\/p>\n
But months on, there’s no sign of the inquiry’s work, beyond an update to the inquiry’s website pushing the release date off to “mid -2025”.<\/p>\n
‘Large volume’ of responses delayed inquiry, govt says<\/p>\n
For Bendigo teacher Jackie Handley pain is a daily battle.<\/p>\n
Ms Handley was diagnosed with fibromyalgia, a chronic condition involving widespread body pain, after 17 years of doctors’ visits, costly appointments and frustration.<\/p>\n
Once a keen sportswoman who competed in high level netball and basketball, she said her condition now meant some days just getting out of bed was a challenge.<\/p>\n
Leaving the house can be impossible.<\/p>\n
<\/p>\n
Jackie Handley, mother to two-year-old Havvie, says her condition makes her feel isolated. (ABC News: Nicole Asher)<\/p>\n
“I feel very isolated,” she said. “I used to have a lot of friends, but now not so much.”<\/p>\n
“It’s quite hard to function each day knowing that people don’t fully understand what you’re going through.”<\/p>\n
Ms Handley said the financial impact of chronic pain could not be ignored.<\/p>\n
“I’ve seen countless GPs, specialists, psychologists, and natural therapists \u2014 often feeling judged, ignored, or passed from one professional to the next,” she said.<\/p>\n
She estimated she’d spent $200,000 on her health over the course of her adult life.<\/p>\n
“It can take years to be believed, let alone diagnosed or treated appropriately, Ms Handley said.<\/p>\n
“You’re often dismissed, misunderstood, or told it’s all in your head.”<\/p>\n
It was experiences like Ms Handley’s that initially spurred the government to launch the inquiry.<\/p>\n
Sexism and misogyny in the health system<\/p>\n
A government Women’s Health Advisory Council and a panel of experts were tasked with “examining systemic issues and solutions” around the treatment of women’s pain in Victoria.<\/p>\n
In September last year, Health Minister Mary-Anne Thomas released preliminary themes which had emerged from a survey associated with the inquiry.<\/p>\n
The survey found women and girls had experienced sexism and misogyny in the health system, had pain dismissed as psychological or emotional, and had diagnoses delayed.<\/p>\n
Despite those dire early findings, the inquiry itself has also been delayed.<\/p>\n
In response to questions by the ABC, a government spokesperson said the report was yet to be finalised.<\/p>\n