Ashley Young has suffered from debilitating pain for years.
The 22-year-old has struggled with urinary and digestive issues, and her health is suffering so much that she is now largely bedridden, unemployed and isolated from her family and loved ones.
That’s the grim reality for Young, who suffers from endometriosis – a debilitating condition that affects around 1.4 million Australian women and can take an average of seven years to diagnose.
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In Young’s case, things got so bad that she ended up paying $14,000 to travel to the United States to have complications of the condition known as “endo” treated.
But an Australian research group is now working to shorten this massive diagnosis delay, hopefully giving women a chance to find out sooner if they have endometriosis and helping them get the treatment they desperately need before it’s too late.
The Endo Torture
Endometriosis is a condition in which the tissue lining the uterus grows outside the uterus, causing chronic pain problems, digestive problems, and bleeding. If left untreated for too long, it can cause ovarian cysts and adhesions and deprive women of their fertility.
It affects about one in nine Australian women, according to the Federal Department of Health.
For Young, who was diagnosed with the disease two years ago, it meant a random flare-up of severe pain in her abdomen, pelvis, chest and back.
“In the last two to three years I wouldn’t say I’ve lived my life, I feel like a completely different person than before I got sick,” she told 7NEWS.com.au.
It has also meant suffering from urinary and digestive problems, so she has struggled to adjust to everyday tasks and has become socially isolated.
“I was bedridden,” she said.
“It’s been a few years since I’ve been employed. I have not seen family members living 10 minutes away from me for six to twelve months at a time.”
In all, Young said she went to the doctor 10 times before she was diagnosed with endo.
Although she underwent surgery to remove cysts two years ago, her pain continued. But the doctors told her it was digestive problems or mental problems.
She recently paid $14,000 to travel to a specialist clinic in the US to remove further growths that Australian doctors missed when they operated on her two years ago.
She is among many Australian women who feel that their pain was initially ignored, misdiagnosed, or their endometriosis was not properly removed during surgery.
Turning the tables on endometriosis
In fact, current research shows that despite the high rate of endometriosis in the community, women still wait an average of seven years between the onset of symptoms and a full diagnosis of the disease.
“A lot of people don’t get validated when they go to a doctor,” said endometriosis expert Professor Louise Hull.
Hull, who heads the Adelaide Endometriosis Research Group at the University of Adelaide, is working with a team of researchers to launch a website that would allow women to upload their MRI or ultrasound to check if they have signs of endometriosis .
She said that if the endoscan was negative, there was a 35 percent chance of undetected cysts, which meant most women ended up needing surgery to check for their symptoms.
What Hull’s team is doing is building an artificial intelligence tool that uses donated scans of patients with the disease. To do this, however, they need more submissions from patients who they believe would be used anonymously.
“If you look at these scans mathematically, you can see patterns, and if you can tell who had endo or not because of surgery, you can actually look at the markers for endo,” Hull explained.
It is hoped that the research team will be able to release a prototype of the website later this year, before a publicly available tool can be used to allow women to upload their scans and search for the condition in the future.
Young said the site would help women validate their symptoms, which is sometimes all they need.
https://7news.com.au/news/sa/adelaide-researchers-to-release-website-allowing-women-to-self-check-for-endometriosis-c-10058337 Adelaide researchers launch website that allows women to check themselves for endometriosis