It took Tori 13 years to be diagnosed with endometriosis. Experts say new funding could speed up the process

Tori Quine first experienced the pain of endometriosis about 30 years ago, when she was a teenager. But it took 13 years for her to be formally diagnosed.

"Generally [the medical community] were quite dismissive — they'd do some basic tests and when everything came back clear, I was made to feel that I was making it up and given anti-depressants," she said.

Endometriosis is a chronic condition where the lining of the uterus grows elsewhere in the body.

Women who have it can experience extreme pain, intense cramps, fatigue and other symptoms.

For Ms Quine, the pain makes it difficult to do basic things, like get dressed or moving around.

"It's like being punched in the gut but no-one's punching you, and you're constantly in that shock place, but then life goes on and you have to keep moving," she said.

The mother-of-two has had surgery three times, and had to stop working because of chronic pain.

"There's only so many sick days you can take, and there's only so many times you can curl up in a ball at work," she said.

'You just want to live your life to the fullest'

About 1 in 9 women live with the condition. Despite how widespread it is, many women wait years to be diagnosed.

Ms Quine said back in the 1990s, her experience with the attitude of the medical community was, "If we can't see it with our tests, it's not real".

She said not being taken seriously also took a toll, as well as the physical pain of endometriosis.

"If they're telling me nothing's wrong … then you go home and you're still in pain, it's a very uncomfortable landscape to be in, mentally, because you just want to get better. You just want to live your life to the fullest," she said.

"The depression I felt was always secondary to the primary cause, which was physical pain, and I really resented being told I was depressed and dragging everyone down with not being able to keep up."

The federal government will include $58 million in the upcoming budget to help more than 800,000 Australian women who live with the disease.

That funding, to be included in next week's budget, will fund two specialist treatment clinics in each state and territory, including funding to access MRI scans, and money for patient management plans and research.

In making the announcement on Friday, Prime Minister Scott Morrison revealed his wife, Jenny, has the condition.

"This was the most awful thing to see the one you love go through every single month," he said.

Jason Abbott — a professor at the University of NSW and the medical director of Endometriosis Australia — said the measures could help reduce the time it takes for women to be diagnosed.

"About 20 years ago, when I first started in the area of endometriosis, the time to diagnosis was 12 years — and we've halved that time and we've halved that time through a number of initiatives," he said.

"The clinical guidelines that were put out through the European Society for Reproductive Health was a really important initiative in getting that because it started people talking.

"We've released the Australian guidelines just last year — really scientifically sound, evidence-based guidelines and the announcement today, that we get to continuously update that, is going to reduce that time to diagnosis."

Professor Abbott also said the package would help endometriosis research in Australia.

"The more we invest in research – we may be in the process, in the future, to be a world leader for genetic screening for endometriosis," he said.

"This package today does an enormous amount to roll forward those programs in Australia, to make sure we are at the forefront of endometriosis research, development and patient care."

Perception of endometriosis shifting

In some ways, having endometriosis in 2022 is different to having it in the 1990s.

Ms Quine said more people were now aware of the disease or knew someone with it.

"It was not like that in the '90s — you were basically on your own, made to feel like you were crazy, making it up — and that's changing, definitely," she said.

But Ms Quine still sees many ways life could be improved for women with endometriosis. Because the condition can be unpredictable, she says more flexible work arrangements could help women, even in volunteering roles.

"A lot of women have a lot to offer but they can't fit into the healthy person's framework," she said.

And, she said, ideally, Australia will get to a place where there's "no questioning of what women are feeling".

"If doctors don't have an answer in a test, say, 'I'm not sure [what the pain is] but let's look into it. I'm taking you seriously. You're not alone,. There's millions out there. We're going to work through this', not, 'You're crazy, here's some antidepressants'," she said.

"If there's a shift, then that's a fantastic outcome."