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 鈥榡ust鈥 heavy periods. This soon evolved to even heavier periods, constant pain and cramping. 鈥淩eflecting on it now, it was not normal. But I was too scared to go to a doctor,鈥 says Alison. Once she started to see different doctors, she received treatment for 鈥榖ad periods鈥. 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. 鈥淚 bled for 3 weeks at a time, with a couple of days in between before it started all over again.鈥
At the age of 18, through invasive laparoscopic surgery, Alison was diagnosed with endometriosis.
Alison鈥檚 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鈥檚 6.4 years of suffering, missing out on social and work life and not receiving the help that would otherwise be available. 鈥淏ecause other people didn鈥檛 quite believe what was going on, I didn鈥檛 quite believe what was going on. There was no validation of what I was experiencing,鈥 reflects Alison.
The diagnostic delay comes with an economic burden, too. In 2018, the total economic impact of endometriosis on Australia鈥檚 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.