Endometriosis: Record funding to address problem that afflicts one in nine women

It affects one in nine Australian women, including Prime Minister Scott Morrison’s wife, Jenny. Now there is a new plan to address it.

It affects one in nine Australian women, including Prime Minister Scott Morrison’s wife, Jenny.

Endometriosis, a common disease where tissue similar to the lining of the womb grows outside it in other parts of the body, can spread to the bowel and bladder and can cause infertility.

Now, after years of campaigns for better treatment for women, the Prime Minister is set to announce the biggest funding package for endometriosis ever recorded in a $58 million plan.

Separately, the Prime Minister will also announce $81 million for a new Medicare item for genetic testing to support couple planning for pregnancy.

The endometriosis funding will deliver on the creation of new specialist treatment centres in every state and territory as part of existing GP infrastructure.

The new clinics will include GPs specialising in women’s health and pain management, as well as nurses, allied health (dietitians, pelvic physiotherapists and psychologists) and educators.

For women in regional areas, new telehealth services will assist rural and regional women and could be provided for non-surgical consultations and education and support services.

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Mr Morrison said he had seen how “debilitating” endometriosis could be through the experience of his wife, Jenny. Picture: Tracey Nearmy/Getty Images

An estimated 830,000 Australian women and girls suffer from endometriosis at some point in their lives with the disease often starting in teenagers, but many women are not diagnosed until much later in life.

Mrs Morrison was diagnosed with the condition at 26, after struggling to fall pregnant, despite suffering “excruciating” symptoms since Year Eight.

“I would get so sick … vomiting, diarrhoea, terrible backache, really extreme cramps … you can get pain down your legs and everything,” she told The Daily Telegraph.

The mother-of-two said she had undergone about 10 rounds of IVF and was at the point doctors were telling her to consider adoption instead before seeking a second opinion from a specialist and uncovering the cause of her problem.

She underwent a five and a half hour surgery where the endometriosis was removed from her body, the procedure costing her a portion of her bowel.

After surgery, she was able to conceive the family’s two daughters, Lily and Abby.

Prime Minister Scott Morrison said the new funding will devote $25.2 million to support women with severe endometriosis and other conditions that affect fertility to access a new Medicare funded magnetic resonance imaging (MRI) scan.

“One in nine Australian women suffer from endometriosis and this funding today will bring welcome relief and support through better diagnosis, treatment and care,” Mr Morrison said.

“I have seen first-hand with Jen just how debilitating endometriosis can be for women, the mental and physical toll it takes and it’s so important we continue to fund new services and treatments for the hundreds of thousands of women who suffer from endometriosis.

“Our plan will improve the quality of life for women living with endometriosis, with record support, building on our National Action Plan for endometriosis, so women of all ages can get diagnosed and be supported.”

A $2 million campaign will be rolled out to increase awareness and education of endometriosis among priority populations through the Australian Coalition for Endometriosis, a Mentor Program to support those newly diagnosed with endometriosis and a Workplace Assistance Program to support employees and employers to navigate discussions in the workplace.

The Morrison government will also help couples plan for their pregnancy by investing $81.2 million to create a new Medicare item to support access to genetic testing for three serious genetic conditions.

This testing will be free and universally available for CF, SMA and FXS. These are the most common inheritable genetic disorders resulting in substantially reduced life expectancy within the Australian population. The test identifies if either couple is a carrier of the gene, prior to falling pregnant.

Currently the testing is offered through a privately funded service costing couples from $250-$450 per test.

“This will allow thousands of Australians to undergo genetic testing without huge out of pocket costs and enable them to see if they are genetic carriers of disorders like CF, SMA and FXS,” Health Minister Greg Hunt said.

“As a passionate advocate for genetic testing, I am proud that the Morrison government is making this significant investment, which will not only help Australians and their families, but ensure they know and understand the risks of inheritable genetic disorders.”

Liberal MP Nicolle Flint was diagnosed with Stage 4 endometriosis in 2020. Picture: John Feder/The Australian

Liberal MP Nicolle Flint said the plan will help change lives for the better.

“It was a huge shock to me to be diagnosed with Stage 4 endometriosis in early 2020,’’ she said.

“Endometriosis had stuck both of my ovaries and my fallopian tubes to my uterus, one of my ovaries was also stuck to my bowel, and there was a lot of ends on my bladder and my bowel. It took 3.5 hours of surgery to remove it. My diagnosis explained everything; my period pain that I thought was normal, my heavy periods, clotting, my terrible bowel pain and related bowel issues and more. I have an amazing team of medical specialists who have my pain and my symptoms under control and that is what we want for everyone who has ends.

“So as someone who lives with ends, I know that our announcement today will change lives, and help women and girls get the advice and support they need.”