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If there were ever a social media comment harrowing enough to stir tears, this would be it.
As news.com.au pushes for better care for the one million Australians suffering from endometriosis with the launch of our About Bloody Time campaign, thousands of women have come forward and shared their stories battling the oft-disregarded disease.
But for some, help is far too late.
In the comment section of our petition, which you can sign here, 82-year-old Ronda Joiner cuts to the heart of how abysmally the health system has failed women in only two sentences.
She isn’t asking for sympathy, nor compassion – her story in itself says everything.
“There was no support for me. I had a hysterectomy at 35, no alternative offered. It was devastating,” Ronda writes of the procedure, which entails the complete removal of the uterus. “When I was 60 years old, when talking to a doctor, he made the statement that it was a disgusting disease, and it was brought on by promiscuous behaviour. I’d had endo since I was 13 years old.”
Medicare is failing women and it’s About Bloody Time things changed. Around one million suffer from endometriosis. There is no cure. Help is hard to come by and in rural or regional areas, it’s virtually impossible. We are campaigning for longer, Medicare-funded consultations for endometriosis diagnosis and treatment.
Despite the prevalence of the condition, specialists are ill-equipped to manage pain and Medicare rebates are so low that there is no incentive to take time to provide thorough care. An initial gynaecologist appointment currently receives less than half the rebate of other specialist appointments dealing with issues as complex as endometriosis.
Unfortunately, as the system has hardly evolved with women’s needs since Medicare was established in the 1970s, experiences like Ronda’s are still commonplace.
Another commenter, Amanda Black, wrote how her “daughter’s experience with this situation has horrified me”.
“Until very recently when we found a good gynaecologist, she’d been minimised and gaslit for too many years,” Amanda added.
A working gynaecologist signalled the need for longer, Medicare-funded consultations in line with news.com.au’s objective.
“I’m a gynaecologist and I know it takes longer to help women with pain – my usual initial appointments for pelvic pain and endometriosis are 1 hour long,” Amanda Whittaker wrote.
“Surgery is not always the answer, especially for women who have already had one or more surgeries. Rather listening, validating and educating which takes time. We have been asking for a different item number for a long time. Please change this!”
Another Melbourne-based gynaecologist added, “My patients are entitled to fair and equitable care.”
In what is emerging as a common thread, sufferers all felt their symptoms and suffering had been dismissed by doctors for years.
“Told it was my diet, told it was just a bad period, told it was in my head,” one woman wrote. “It wasn’t. I had endometriosis all over my ovaries and bowels. The discrimination against women with medical diagnosis needs to end.”
“My daughter has suffered with this and still does. She’s been fobbed off by so many doctors and even had her gallbladder removed unnecessarily,” another said.
A news.com.au survey of more than 1700 Aussies who suffer from endo found 54.4 per cent of sufferers were dismissed by their health practitioner.
Instead of help, they were offered baffling advice – maybe you should just lose some weight, try having a baby, or seek a psychiatric assessment instead.
About Bloody Time is an editorial campaign by news.com.au that been developed in collaboration with scientists recommended by the Australian Science Media Centre, and with the support of a grant from the Walkley Foundation’s META Public Interest Journalism fund.
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