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When Jemma Nesbit-Sackville experienced severe cramping during her menstrual periods, she did not realise it could be a symptom of a serious health condition.
“When I started menstruating at around 14, I didn’t know that something was wrong,” she said.
“I would often look at other people who were getting on with their lives and playing sport and fitting into their clothes and I was like, ‘I’m obviously weak and just can’t get on with life’.”
Endometriosis is an inflammatory condition that affects nearly 1 million Australians, causing cells similar to the ones that make up the lining of the uterus to grow in other parts of the body.
Ms Nesbit-Sackville said growing up in Bendigo, endometriosis was not commonly discussed and it was only during pelvic surgery for another condition that she was diagnosed, at the age of 35.
“I learned after having this surgery that you need quite a number of specialists to help you manage your endometriosis,” she said.
“So a gynaecologist, women’s health physio, your GP … and it generally does require ongoing surgeries.”
She now lives in Sale in Victoria’s east, and to manage her endometriosis has to regularly travel to Melbourne.
“That’s a 220km each way trip and unfortunately I can’t always do that drive, especially if I’m in pain,” she said.
“So I rely on someone else to be able to take me there.
“I have to take time off work to be able to have these appointments, which is a whole day, if not more.”
It takes an average of five years for women living in metropolitan areas, and six years for women living outside of cities, to be diagnosed with endometriosis, according to Endometriosis Australia.
AI pinpoints abnormalities
Endometriosis Australia has developed a period and reproductive tracking app that aims to reduce the delay in being diagnosed with endometriosis.
The CHARLI app identifies abnormal patterns via self-logged data, promotes lifestyle changes, and links users with healthcare professionals including GPs, specialists and allied health practitioners.
CHARLI co-founder Samantha Costa said the app should improve access to healthcare, particularly for women living outside urban areas.
“We’ve got a telehealth service within the app that users can link in to,” she said.
“So all within the app, which just allows someone to be able to … access care at the click of a button.
“Yes, you still need to go and potentially have blood tests or have scans to get the full picture … [but] the majority of [care] can be done via the telehealth platform.”
Ms Costa said the app aimed to detect abnormalities that women with endometriosis may not have noticed until later.
“It allows young girls to be able to see that potentially what they’re experiencing early on in their reproductive journey is potentially not normal,” she said.
“And to be able to open up those communication pathways early with their treatment provider, whether that’s on the app or whether it’s at a local GP, to start that process earlier than what they potentially would have.”
Creating equal access
Endometriosis Australia medical director Anusch Yazdani said women living in regional and rural areas could benefit from CHARLI because women’s health services were concentrated in metropolitan areas.
“There are just not enough people in those low-density areas to keep clinics running and so we need to do smarter things,” Dr Yazdani said.
“But we do have ways of making those people accessible to every Australian girl and woman.”
Ms Nesbit-Sackville said the app would help women like herself to advocate for themselves by collating a full set of data to share with health professionals, while also providing additional information related to endometriosis.
“The app, CHARLI, will be fantastic for women to be able to have a set of data, go to their GP and say, ‘Look, this is what’s actually happening, I’ve been tracking it, I have this information’,” she said.
“After I got my diagnosis, my specialist was wonderful and giving me some information, but I needed to google many things to try and understand what was happening.
“And how I was going to manage this in future and what those impacts would be on things like my career, my fertility, and being able to access specialist care that I would need.”
Dr Yazdani said the pain from endometriosis affected every aspect of person’s relationships and work.
“We know that per individual, the cost is just over $30,000 per year from just purely lost productivity, let alone the cost … from hospitalisations and treatment,” he said.
“The women who are living in rural and remote areas have exactly the same right to the care as the women who live in those urban, predominantly white areas.”
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