Why Maddie is willing to spend $100,000 on overseas surgery for endometriosis

But, after a decade of untreated symptoms and unsuccessful treatments which have left them enduring daily immobilising pain, Maddie said they have been left with no choice but to seek help outside Australia.

"This is not a decision I made lightly, but it's the best chance I've got to live my life," they said.

Like many people with endometriosis, an incurable disease where lesions that are similar to the tissue that lines the uterus grow in other parts of the body, Maddie has struggled to be diagnosed and access treatment.

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Now 26, the self-described "disabled, neurodivergent, queer, non-binary PhD student", first started experiencing symptoms of endometriosis at 15, when they were diagnosed with irritable bowel syndrome.

At 19 they began to experience heavy and prolonged periods and were put on the pill which affected their mental health.

"I became suicidal and had to take a break from uni to recover, so I was put on different pills because that pill didn't work and I ended up bleeding every day for probably a year and a half," they said.

"Still endometriosis was never mentioned to me by anybody, I went for ultrasounds, colonoscopies, endoscopies and no one ever found anything.

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"Eventually, I was in a university sociology class and we did endometriosis as a case study for sexism in the medical field. I thought, 'oh my God, that sounds like me'."

They eventually got a referral to see a specialist, who immediately booked them in for laparoscopic surgery.

Unfortunately, this only increased their pain, and it has now become hard for them to walk without a cane, or shower without a chair.

For the past two years, they have been on a waiting list for a chronic pain service.

As a structural biologist and PhD student at UOW, Maddie is hoping their research will make a difference in chronic pain treatments, but was forced to take a leave of absence when their pain and fatigue became too much by the start of this year.

"Sometimes you have to be in the lab for 12 hours and I can't do that because it's too physically demanding, even if I'm just sitting there," they said.

"So the reason why I chose to go overseas is because I've kind of exhausted all of my options here."

"I've seen experts in this country, I've had surgery with them and I was still in pain afterwards.

"I am convinced that I still have endometriosis, because there's no record of my surgeon ever checking my bowels, even though I have quite an extensive history of bowel involvement or bowel symptoms."

Feeling "helpless and hopeless," Maddie began researching wheelchairs online and stumbled across a global community of endometriosis advocates who spoke about different treatments available overseas.

Maddie is now tentatively booked to go to the United States in September for excision surgery, and has also been looking at surgery options in India, which are more affordable.

With their parents dipping into their superannuation to cover the trip and medical costs, Maddie has started a GoFundMe campaign.

They are also campaigning for a change in the way endometriosis is defined and dealt with in Australia.

"In Australia, endometriosis is treated under gynaecology as a reproductive disease, but it's actually a whole body condition," they said.

"It can grow in every organ of the human body. It's been found on every organ, including the eyes and the brain and the nose and all of that. So it's not a reproductive issue or just a women's issue."

Endometriosis affects more than 11% of Australian women, girls and gender diverse people, and Maddie said it was important to note people without uteruses could have the condition.

"The definition of endometriosis needs to include people like myself, non-binary people, but also trans people and other people who don't fit under the umbrella of women or people with uteruses," they said.

"It's also been found in this men as well, so you don't have to have a uterus to have this disease. But in Australian, the people who treat this disease in this country are gynaecologists."

They said they believed this had resulted in a "narrow approach" to treatment, which usually started with hormone treatment or birth control, which did not always stop the growth of tissue.

"I decided to go overseas because there are centres for endometriosis care where the only thing that those doctors do is endometriosis surgery," they said.

"They're not delivering babies, they're not doing IVF or other gynaecological issues, and they have become experts on how to spot the disease.

"I hope that means this surgery will be more effective and permanent than anything I could access in Australia, and be one of the last surgeries I have to have for the condition."