It took six years to diagnose Adele with endometriosis. A $50m donation aims to end the wait

A world-first endometriosis institute at the University of NSW aims to accelerate advancements in diagnosis and targeted treatment by harnessing the breakthroughs that revolutionised cancer care for the millions of people with the poorly understood condition.

NSW pokies billionaires, the Ainsworth family, have committed $50 million to establish the Ainsworth Endometriosis Research Institute (AERI) – the biggest known philanthropic donation to endometriosis research worldwide.

The Ainsworth Endometriosis Research Institute aims to revolutionise treatment options for people like Adele Taylor.Credit: Sitthixay Ditthavong

Professor of obstetrics and gynaecology Jason Abbott, the clinical director of AERI, said the funding was a game-changer after a 30-year lag in science investment for endometriosis and an inadequate one-size-fits-all approach to treatment.

“We need to go back to the fundamental science of endometriosis,” Abbott said.

“This is not just one disease. We’ve got an umbrella condition called endometriosis, and there are lots of different presentations and permutations within that.”

Abbott compared the current state of endometriosis research to breast cancer 30 years ago, before breast cancer was recognised as several different cancers, thanks to discoveries in genetics, inflammatory markers and disease biology that revolutionised diagnosis and precision treatment.

“That’s what we need to aim for with endometriosis patients,” Abbott said.

“For some people, surgery is best, but for others, they may need to avoid surgery at all costs. We must ensure that we are channelling people to get the best treatment for their particular disease.”

An Australian study estimated 50 per cent of cases could be linked to a genetic risk and a meta-analysis, including 60,674 endometriosis cases and 701,926 controls, found 42 genetic regions associated with a risk of endometriosis.

Having a mother or sister with endometriosis increases the likelihood of developing the condition by about 7 per cent.

The endometriosis dilemma

Endometriosis is a condition in which tissue similar to the lining of the uterus (called the endometrium) grows in other parts of the body, most commonly the pelvis. It can also spread through other organs, forming scar tissue and often causing severe pain and other distressing symptoms. One in three cases leads to infertility.

An estimated one in nine girls and women in Australia has endometriosis. It’s one in seven among women aged 47 to 52 and hospitalisation rates for endometriosis among 20- to 24-year-olds have doubled in the past decade to 660 per 100,000 females. 

Investment in understanding the basic science of endometriosis is 30 years behind, leading to damaging delays in diagnosis (on average, eight years from symptom onset in Australia) and effective treatments.

The economic burden of endometriosis in Australia is an estimated $7.4 billion to $9.7 billion annually.

Adele Taylor described her abdomen as a pin cushion of cuts and laparoscopy holes from the 16 surgeries to burn, cut and laser the cysts and lesions of her fast-growing endometriosis.

During her teenage years, her doctors had no explanation for the cysts and lesions. Since she was 13, she had shockingly painful periods, terrible bloating and heavy bleeding that seeped through her school uniforms.

“I was one of those young girls who went to GPs and was told it was all in my head,” Taylor said.

Her first surgery was booked only because the pain of an ovarian cyst was mistaken for appendicitis when she was 15.

Taylor was diagnosed with endometriosis at 19, six years after she first experienced symptoms. The lesions had spread rapidly through several of her organs. Her 20s were characterised by pain and more surgeries. Hormone treatment made her nauseated and played havoc with her moods, threatening to derail a burgeoning corporate career.

Adele Taylor’s treatment odyssey included 16 surgeries and hormone treatment that made her ill.Credit: Sitthixay Ditthavong

Taylor’s gynaecologist told her not to put off having children since she may struggle to conceive. She gave birth to her daughter, Charley, in her early 30s. While Taylor breastfed, her endometriosis seemed to have paused only to “return with a vengeance”.

“I had extensive surgery, which involved cutting away some of my organs, including my bowel, to attack it and remove the endo,” she said. “Scar-tissue-wise, it’s pretty awful in there.”

Under Abbott’s care, Taylor moved to a daily pain medication regimen aimed at treating the symptoms of her endometriosis with minimal surgery and lifestyle changes, including running, strength training and a balanced diet.

“He was focused not only on treating the condition, but recognising I’d been through a pretty awful experience,” said Taylor, now an avid runner who recently completed the New York Half Marathon.

“I will be on medication for the rest of my life [but] I’ve had good pain relief for a decade [and] almost seven years when I didn’t need surgery.”

Jess Taylor, chair of peak body the Australian Coalition for Endometriosis, characterised current endometriosis treatment as “throwing spaghetti at the wall and seeing what sticks in terms of treatment options”.

“Having an entire institution dedicated to understanding the mechanisms of endo and all the systems it impacts across the body puts this condition on a whole new playing field,” she said.

Professor Caroline Ford, the scientific director of UNSW’s AERI, with clinical director Professor Jason Abbott.Credit: Peter Rae

AERI is expected to partner with top international scientists, clinicians, and philanthropists, focusing on genomic research, biobanks of endometriosis tissue, and advanced testing.

Professor Caroline Ford, AERI’s scientific director, said the institute would build a strong evidence base to support doctors in offering personalised medical care for each endometriosis patient.

“This substantial investment will allow researchers for the first time to build a solid understanding of endometriosis biology and pathogenesis that will lead to improved detection, management and treatment,” Ford said.

UNSW said AERI was only possible with the $50 million donation by the Ainsworth family. Anna and her daughter Lily Ainsworth have both experienced the debilitating effects of the disease.

Lily Ainsworth has lived with endometriosis since she was 15 years old, with daily chronic pain and severe, debilitating flare-ups that could last weeks.

Anna and Lily Ainsworth at UNSW.Credit: UNSW

“This reality is shared with millions of people living with endo around Australia and the world. We believe this can change,” Ainsworth said.

Led by patriarch Len Ainsworth, founder of two of the world’s biggest pokies manufacturing companies, Aristocrat Leisure and Ainsworth Game Technology, the family is building a philanthropic legacy by donating tens of millions to institutions, universities, hospitals and art galleries. 

UNSW has an Ainsworth Building in its engineering and manufacturing facility after a $10 million donation.

UNSW academics, who declined to speak on record, are among critics of institutions that accept these donations. They say the family’s philanthropy should not overshadow the harms inflicted by pokies.

Anti-gambling advocate Tim Costello said that when universities and other “powerful culture bearers and gatekeepers in society” take Ainsworth’s money, “gambling reform becomes so much harder”.

“It’s better that [the Ainsworths] do good with it, but I wish they gave more to mitigating gambling harm,” Costello said.

A spokesperson for UNSW said the university accepts gifts in good faith with the expectation and intention that the donation will have a positive impact in line with its gift acceptance policy.

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