When the pain suddenly came on, Emma Hurst would be left completely incapacitated.
"I could hardly construct a sentence, could not stand, vomited multiple times from the pain, and my body was shaking uncontrollably," she recalled.
Painkillers often didn't make a difference, and one episode was so severe it pushed her to call for an ambulance for the first time in her 39 years as she lay on a bathroom floor.
The New South Wales MP went on to have a series of similar experiences when working in her office before she had surgery to treat her adenomyosis
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The condition, which affects up to one in three women, occurs when endometrial tissue grows in the wall of the uterus, causing inflammation, cysts and scars.
"People were telling me, you need to go home. But the reality was, I couldn't drive home. I couldn't even walk downstairs to get into a cab."
"But far more shocking than my own story, is the fact that many women are suffering in a similar way, without a diagnosis," Hurst said.
Hurst had to pay $400 to have an MRI to diagnose her adenomyosis.
But if she had fallen and broken her knee, Medicare would have paid for an MRI to determine the damage so she could get the best treatment.
Sydney interventional radiologist Eisen Liang is among the medical professionals concerned about the financial implications for women who find their medical issues are not well covered.
"Talk about gender inequality," he told 9news.com.au.
Every week Dr Liang sees patients suffering from severe pain and symptoms caused by women's health issues that are not supported by Medicare.
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He believes the out-of-pocket cost of an MRI to investigate adenomyosis is one of the reasons so many cases of the often-debilitating condition go undiagnosed.
Having been through the long and confusing process of getting an adenomyosis diagnosis, Hurst could not agree more.
"What it means is if somebody can't afford $400 just to get a diagnosis, they will be left on painkillers for potentially the rest of their life," she told 9news.com.au
"We can't just leave people without answers and feeling hopeless.
"This is a really serious problem and it needs to be reviewed immediately."
'It happens in all areas of women's health'
The lack of financial support for women getting a diagnosis of adenomyosis speaks to a much wider issue, according to the President of the National Association of Specialist Obstetricians and Gynaecologists.
"It occurs in absolutely all areas of women's health," Dr Gino Pecoraro OAM told 9news.com.au.
"It's criminal. I don't understand why women aren't marching in the streets.
"Medicare Patient rebates for female-specific scans, pathology tests, consultations and in hospital procedures are significantly less than equivalent rebates for men."
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The Medicare rebate for a scrotal ultrasound is $96.90.
The refund for a pregnancy ultrasound is $53.10.
These prices are calculated to be 85 per cent of what Medicare says the procedures should cost.
However, Pecoraro believes Medicare's pricing system is wildly "out of touch", and many people will find doctors charge hundreds of dollars for a pregnancy ultrasound.
He further disagrees the suggestion a scrotal ultrasound costs more for doctors to perform than a pregnancy ultrasound: "A pregnancy scan is arguably more complicated to perform and takes longer."
A spokesperson for the Department of Health and Aged Care told 9news.com.au there were different types of obstetric and gynaecological ultrasounds, priced between $19.65 and $166.45 on the MBS.
MRIs to investigate adenomyosis were added to the Medicare Benefits Schedule (MBS) in November 2022, the spokesperson said.
This is only available for patients where the condition is believed to be causing fertility issues.
This means the MRIs to diagnose adenomyosis are only covered by Medicare for women undergoing IVF.
"If this Medicare service were to be expanded, an application would need to be considered by Medical Services Advisory Committee (MSAC)," the spokesperson said.
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