Science strikes in batt(l)ing endometriosis

Alison Barnes is a gifted athlete. Once a competitive swimmer and cricket player for South Australia, she was only 11 years when she got her first period. While this is a normal part of growing up for many, it marked the start of a lengthy health battle for Alison. One that would overshadow her teenage years and ultimately, change the trajectory of her life.

Initially, it was ‘just’ heavy periods. This soon evolved to even heavier periods, constant pain and cramping. “Reflecting on it now, it was not normal. But I was too scared to go to a doctor,” says Alison. Once she started to see different doctors, she received treatment for ‘bad periods’. Over many years, Alison was prescribed various forms of contraception, from the pill to contraceptive implants and intrauterine devices, to stop the bleeding. But none of it made it better. “I bled for 3 weeks at a time, with a couple of days in between before it started all over again.”

At the age of 18, through invasive laparoscopic surgery, Alison was diagnosed with endometriosis.

Alison’s story is one of many. One in seven women, or those assigned female at birth, live with endometriosis. Unfortunately, diagnosing endometriosis can be challenging, something Alison knows all too well. In Australia, it takes 6.4 years on average to receive a diagnosis. For people affected, that’s 6.4 years of suffering, missing out on social and work life and not receiving the help that would otherwise be available. “Because other people didn’t quite believe what was going on, I didn’t quite believe what was going on. There was no validation of what I was experiencing,” reflects Alison.

The diagnostic delay comes with an economic burden, too. In 2018, the total economic impact of endometriosis on Australia’s economy was $7.4 billion[1], but this figure only captures costs incurred post-surgical diagnosis. We still lack data about the economic burden of endometriosis prior to diagnosis.

Providing a solution for fast, reliable and non-invasive diagnosis is the mission of the IMAGENDO® project team within the Endometriosis research group at the Robinson Research Institute.

IMAGENDO® is an automated and guided diagnostic system for the identification of specific endometriosis features that can be visualised in transvaginal ultrasound (TVUS) and magnetic resonance imaging (MRI) scans. An artificial intelligence algorithm that has been developed and trained by hundreds of images, locates and consolidates a specific set of endometriosis features and yields scores for the probability of a diagnosis and, if present, the likely severity.

Recent funding success means IMAGENDO® can now expand its focus to include adolescents, a group particularly impacted by living with endometriosis. Diagnosis of endometriosis in adolescents is especially challenging because many symptoms are often dismissed as ‘expected’ menstrual pain. Yet adolescence is a critical stage of social, emotional and scholastic development, so accurate and early diagnosis is vital.  

Dr Jodie Avery was awarded almost $2 million in funding for an Ideas Grant from the National Health and Medical Research Council (NHMRC). Together with Professor Louise Hull and their team, they aspire to reduce the diagnostic delay and optimise investigative pathways for young people, leading to improved quality of life, and increased work, social and educational participation.