Living with Endometriosis in Rural Australia: Bridging the Gap with Technology

Living with endometriosis is hard enough on its own. Living rurally adds another layer of complexity that you can’t really prepare for. I live about two hours out of a major city, and while I’m lucky to have a supportive health team, getting to them isn’t always simple. Every appointment means working out if I’m well enough to travel there and back in a single day or if I’ll need to stay overnight. There’s also the cost of fuel, accommodation and meals, plus the mental energy of planning for every possible scenario.

Some days, just getting to an appointment feels like a huge effort. When my pain is bad, even sitting in the car can be exhausting, and by the time I arrive, I’m often too tired to fully take in the information or ask all my questions.

And if I can’t make the trip at all, it means waiting longer for answers and delaying the care I need.

I know I’m not the only one navigating this. Elizabeth, 26, from Warrnambool, has had a similar experience. She was diagnosed with endometriosis at 16 and was fortunate to have an amazing local gynaecologist early on. But when that local doctor retired, things became much harder. “Endo doesn’t exist… that was the vibe I got from three different local gynaes,” she told me. She felt there was a lack of education surrounding endometriosis and women’s health in general, which was incredibly frustrating for her.

Elizabeth’s journey hasn’t been easy. She’s had two ovarian torsions, a dislodged Mirena, and nearly lost an ovary in 2022.

After six laparoscopies, she was eventually diagnosed with stage 4 endometriosis but only after years of pushing for answers and committing to numerous long round trips to the city. Travelling is especially challenging for Elizabeth as a mum. Taking her child along adds to the stress, and if she needs childcare, it means added costs or her partner taking time off work. “Day trips are incredibly difficult” she shared, and the travel feels like the only option sometimes, “Local specialists have huge waitlists, sometimes up to two years, and people come from other rural areas because they are closer than the city specialists.”

This is where technology and tools like Matilda have been game-changers. Telehealth means we can still connect with doctors on days we can’t manage the drive, and online communities give us space to feel understood when isolation creeps in.

Matilda, in particular, has been a lifeline for so many rural users already, like Elizabeth. It’s a clinician-led, co-designed digital endometriosis program that walks you through surgery prep and recovery step by step. The program is flexible, which is perfect for those living rurally and can be accessed at anytime, on users own schedule, without worrying about long drives or waitlists.

The 8-week program (suggested 4 before surgery, 4 after) offers practical, evidence-based support from gynaecologists, pelvic physiotherapists, dietitians, psychologists and nurses in one place. With access for a full year, people can revisit resources during flare-ups or when they need a refresher. It also helps make specialist appointments more efficient because users can go in with a better understanding of their condition, try tools like nutrition, movement and mental coaching ahead of time, and focus their limited appointment time on what matters most.

There’s also a community element that makes a real difference. Knowing there are others who get it, who can share tips and encouragement, helps reduce the loneliness that often comes with rural living and chronic pain.

Elizabeth agrees. “Having something accessible, that I can do on my own time, without the stress of travel, makes a massive difference,” she said.

Digital tools like this remind us that we’re not navigating this journey alone even when we’re hours from the nearest specialist. Living rurally with endometriosis can feel like an uphill climb, but technology helps take some of the weight off. It doesn’t replace hands-on care, but it bridges the gaps and gives us confidence that we can still move forward.

Sharing stories like mine and Elizabeth’s is so important. It shows the very real challenges rural patients face but also highlights that solutions exist and they’re worth investing in. With the right mix of accessible healthcare, digital tools and community support, distance doesn’t have to mean disconnection.

- Anna