A comprehensive and unique online endometriosis resource has been developed in Australia to provide resources and support to sufferers of the condition, friends and family who support them, and health practitioners.
Endometriosis (endo) is when tissue that normally lines the uterus grows in areas outside the uterus, such as the ovaries, fallopian tubes, or lining of the pelvis.
Symptoms such as period pain, pelvic pain, infertility, and fatigue may result, and an estimated 800,000 Australian women suffer from the condition.
“Consultation and learning from real people about their experiences and their needs has been at the heart of this project,” Hull said.
“Other key features of EndoZone are that the site has been built to learn, so as more and more people use it, the site will respond by providing the information that is most relevant, and the site is informed by the latest research in the field, so that users can access current, evidence-based knowledge about endometriosis.”
While the condition is not widely understood for a range of reasons, EndoZone, the research for which was led by Hull as part of the University of Adelaide’s Robinson Research Institute, aims to directly respond to that knowledge gap.
“Our research revealed that ‘endo’ can be hugely isolating, difficult to manage and has significant impacts on people’s lives,” Hull said. “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.”
Hull added that people diagnosed with endometriosis were looking for accurate, accessible information that would empower them to make decisions on the magaement of their condition.
In addition, they hoped to raise awareness and empathy among family and friends, as well as provide quickly accessible tools for health practitioners to support them in caring for patients.
Taking into account healthcare costs, absenteeism, and the loss of social and economic participation, the cost of endometriosis to Australia’s economy is estimated at between $5.27 billion (US$3.95 billion) and $9.85 billion ($7.39 billion) each year.
“This digital platform will assist in empowering women with endometriosis to access research, support, and information to help manage their condition,” he said.
The additional funding will be used over the next three years to develop the EndoZone site further, going towards the co-creation of research projects for the endometriosis community and incorporating learnings from the platform’s digital informatics.
