EndoZone: A brand new digital platform for people with endometriosis
For someone encountering the symptoms of endometriosis for the first time, the experience can be incredibly isolating. EndoZone is a brand new online resource that busts myths, shares stories, and summarises cutting-edge research to help make the endometriosis experience easier.
One EndoZone participant, Zehra*, was 10 years old when she first began experiencing the symptoms of endometriosis.
“From my very first period, I encountered an abnormal amount of pain. My peers appeared completely normal when they experienced theirs… I, on the other hand would be in bed, suffering for one to two weeks on end.”
Endometriosis occurs when cells similar to those lining the uterus begin to grow in other places. This can cause the severe period pain that Zehra was experiencing, as well as fatigue and sometimes infertility.
The rest of Zehra’s story, and a number of others, are available to read online at EndoZone along with many other resources.
The Chief Investigator of the EndoZone project is Professor Louise Hull from the University of Adelaide’s Robinson Research Institute. Professor Hull says that although there are other valuable resources available, EndoZone is unique because it has been co-designed with hundreds of people from around Australia who have endometriosis.
“Consultation and learning from real people about their experiences and their needs has been at the heart of this project,” Professor Hull says.
When these participants were asked what might make their endometriosis experience easier, their top priorities were clear.
“Participants were most keen to get advice on managing pain, understanding what levels of pain were normal during menstruation, and having better communication with their health professionals,” says Professor Hull.
“We found that people who are diagnosed with endometriosis were looking for accurate, accessible information that would empower them to make decisions about how they might manage their condition now and into the future.”
In addition to being co-designed by people with endometriosis, EndoZone was developed with input from the Australian Endometriosis Associations, General Practitioners, Allied Health Professionals, Nurse Practitioners, Gynaecologists, Researchers, Health Informaticians and Pain Specialists, so people using the platform can feel confident that the information is accurate and up-to-date.
Not only does EndoZone contain relevant, up-to-date information for patients and doctors, but it is backed by a research-led algorithm that can learn what users want and provide them with what they need.
The data collected from the digital informatics incorporated into the platform will also be used to inform future research projects for the endometriosis community. On Friday 25 March, the Federal Government announced additional funding for the next three years that will be used to support these new initiatives.
*Name changed for privacy.