Skip to main content EndoZone is an evidence-based platform co-created with people affected by endometriosis. Funded by the Australian Government and Jean Hailes for Women’s Health, it has been developed by people affected by endometriosis, along with Australian Endometriosis Associations, General Practitioners, Allied Health Professionals, Nurse Practitioners, Gynaecologists, Researchers, Health Informaticians and Pain Specialists.
People affected by endometriosis were asked what they needed most from EndoZone and we listened. We heard that better communication with doctors about endometriosis and pelvic pain was the top priority among the 347 community members that responded to the survey. More information about period symptoms and what is normal was the next priority, followed by providing methods to help people manage pain better.
We saw this need and have designed this platform to address these concerns. EndoZone has a quick test to see if your pain is normal, a printable health report you can take to your doctor, information about diagnosis, symptoms, and treatments, and lots of self-management techniques. There are links to the Australian Endometriosis Support Groups in your location.
EndoZone also has pages for clinicians. Health professionals can rapidly access the latest ideas about how endometriosis symptoms develop, the best ways of diagnosing endometriosis and the latest treatments, including when to refer for surgery. A section is devoted to the latest research by Australian research groups, which includes ways you can get involved in research projects to improve diagnostics and treatments for future generations.
Things don’t stay still and the needs of people with endometriosis change and are different for each person. Our health informaticians have developed individualised ways to get the information you need that will respond to how these needs change over time.
We are grateful for the support of our many contributors who wanted to make a difference. Our goal is that EndoZone will help people with endometriosis have better health experiences and live well with endometriosis.
Endometriosis is a difficult condition for patients and doctors alike. In Australia, it affects 1 in 9 women and those assigned female at birth. It costs $7.4 billion in healthcare costs each year, and can take an average of 6.5 years to be diagnosed after symptoms begin.
We couldn't do it without the endometriosis associations
Australia has a number of endometriosis associations that can help support you in your endometriosis journey. Some are state-based and others offer nation-wide services.
They provide a range of services including advocacy, peer-to-peer support and support groups, education and training, and research.
Australian Coalition for Endometriosis (ACE)
The Australian Coalition for Endometriosis is a peak consumer and advocacy body representing the needs of those with endometriosis in Australia. ACE aims to provide strategic direction and leadership to improve the outcome, treatment and support for people with endometriosis. Find out more about the organisations that are part of ACE below:
EndoActive’s mission is Awareness, Information and Advocacy for people living with endometriosis (Endo). We aim to promote early intervention and more informed treatment of Endo, a disease affecting 1 in 10 women – around 600,000 – and costing the Australian economy $7.4 billion annually.
EndoActive is an independent, Not-For-Profit Health Promotion Charity, founded in 2014 by Lesley & Sylvia Freedman. Lesley and Syl are passionate about sharing evidence-based research for people with endo and their families.
For cultural reasons relating to menstruation, endo was rarely featured in public discourse or in the media, until recently. We’re proud to have helped break that silence by raising the profile of endo in the media and through our two ground-breaking conferences on endometriosis: Shared Perspectives on Endometriosis.
EndoActive has produced award winning educational video resources featuring specialists and patients. These videos are freely available on YouTube and EndoActive’s website.
As a founding member of ACE, The Australian coalition for Endometriosis, we are delighted to collaborate with other organisations and research institutions striving for solutions to this common, debilitating disease.
Endometriosis Western Australia Inc. (EndometriosisWA) is a non-profit raising awareness, educating and supporting those affected by endometriosis. The organisations’ vision is to provide people affected by endometriosis with access to the best quality information, support and understanding.
Support services facilitated by EndometriosisWA are available via its support group Endometriosis Western Australia WArriors. The group provides online peer support and delivers bi-monthly educational workshops and social events both in-person and online. Endometriosis Western Australia WArriors’ is open to those born or residing in Western Australia, who have or are in the process of being diagnosed with endometriosis and are seeking support.
The purpose of the Pelvic Pain Foundation of Australia (PPFA) is to build a healthier and more productive community by improving the quality of life of people with pelvic pain and to minimise the suffering and burden of pelvic pain on individuals, their families and the community through awareness, education, funding, support, research and improving access to treatment and services.
PPFA is committed to supporting teenagers who suffer severe period pain, pelvic pain, and endometriosis to allow them to fulfil their potential and live the best life possible. To achieve this, we deliver medically responsible, positive, and interactive education to schools in Australia through our Periods, Pain and Endometriosis Program (PPEP Talk®).
QENDO supports people affected by endometriosis and other pelvic health related conditions. Our work assists in advising and advocating for improved services and quality of life for our members. We support anyone affected by endometriosis, adenomyosis, PCOS, infertility or pelvic pain, by offering them the tools, services and programs to understand and take control of their health.
Our reach is far beyond Australia, with some of our peer to peer support programs being available worldwide, through providing online events and video content. We connect local communities across Australia and our reach is rapidly expanding. We are committed to making a difference in the lives of others, and our impact is only growing more each day.
Our app supports over 20 000 users to track and manage their symptoms of endometriosis, pelvic pain and related conditions. This app is free and supported by Government Funding. Download the app here: https://www.qendo.org.au/qendo-app
Other endometriosis associations
Endometriosis Australia is a nationally accredited charity that endeavours to increase awareness of endometriosis, provide endometriosis education programs and tools, and provide funding for endometriosis research. We aim to represent and support all women, girls, and those who are gender diverse to live a life with endometriosis where they can thrive.
Endo Help Foundation is a Victorian based organisation with a team of volunteers who are passionate, dedicated, and determined to educate and empower all those with endometriosis, pelvic pain and period pain. Collaboration and research are central to all that we do at Endo Help Foundation. We worked with the Australian College of Nursing to create a pelvic pain course for nurses. We run a monthly support group for women that have persistent pelvic pain including endometriosis. We hosted a yellow match in March 2020 raising awareness and education about pelvic pain and endo both for players and fans. We have an annual walk – Walk the world 4 endo – raising awareness about endo and pelvic pain.
Contributors
Developing EndoZone has involved the combined expertise of researchers, clinicians, endometriosis associations, and other health experts across Australia. This project received grant funding from the Australian Government Department of Health and Jean Hailes for Women's Health. This project would not have been possible without the contribution of the Endometriosis Community who co-created the platform with the contributors listed below.
Leadership Group
Prof Louise Hull (Chair), Robinson Research Institute, University of Adelaide
Prof Helen Slater, Curtin School of Allied Health, enAble Institute, Curtin University
A/Prof Niranjan Bidargaddi, Digital Health, College of Medicine and Public Health, Flinders University
Ms Melissa Parker, Canberra Endometriosis Centre, ACT Health
Project Team
Dr Beck O’Hara (Project Coordinator) Robinson Research Institute, University of Adelaide
Dr Wenhao Li, Digital Health, College of Medicine and Public Health, Flinders University
Dr Diksha Sirohi, Research Assistant & PhD Candidate (Medicine), University of Adelaide
Ms Brittany Green, Project Admin Officer, Robinson Research Institute, University of Adelaide
Stakeholder Advisory Group
Prof Jason Abbott, Gynaecologist & Laparoscopic Surgeon
Kiera Collier, Endometriosis Western Australia
Maree Davenport, Endometriosis Australia
Dr Clare Fairweather, General Practitioner
Lesley Freedman, EndoActive
Dr Cecilia Ng, National Endometriosis Clinical and Scientific Trials (NECST) Network, University of New South Wales (UNSW)
Michelle Nielsen, Pelvic Pain Foundation of Australia
Jessica Taylor, QENDO
Previous Contribuitors
Mr Marcus Goddard, Robinson Research Institute, University of Adelaide
Prof Sarah Robertson, Robinson Research Institute, University of Adelaide
Ms Kate Chadwick, Robinson Research Institute, University of Adelaide
Dr Carolyn Berryman, Physiotherapist, Pain Researcher
Donna Ciccia, Endometriosis Australia
A/Prof Susan Evans, Pelvic Pain Foundation of Australia, Gynaecologist, Pain Physician
Kirsty Mead, Pelvic Pain Foundation of Australia
Dr Rachel Mudge, Jean Hailes for Women’s Health
Libby Trainor Parker, Endometriosis Advocate
Alexis Wolfe, Endometriosis Australia
Content Writers and Reviewers
Prof Jason Abbott, Gynaecologist & Laparoscopic Surgeon (FRANZCOG, PhD)
Dr Nimantha Abeygunasekara (MBBS)
Dr Mike Armour, Lead - Menstrual Cycle Research Network & Menstruation Matters (PhD)
Ms Jacinta Brinsley, Exercise Physiologist (PhD candidate)
Ms Kate Chadwick, (BA (Hons))
Emily Cutting, Yoga Teacher (RYT 500, RPYT)
A/Prof Subhadra Evans, Endometriosis Researcher (PhD)
A/Prof Susan Evans, Gynaecologist, Pain Physician (FRANZCOG, FFPMANZCA, PhD)
Dr Katya Fleming, Endometriosis Western Australia (BSc, MD)
Tharushi Gamage, Medical student (MBBS IV)
Dr Jessica Grieger, Nutrition and reproductive health researcher (PhD)
Prof Louise Hull, Endometriosis Research Group Lead, Fertility Sub-specialist (FRANZCOG, PhD, CREI)
Dr Steven Knox, Consultant Radiologist, Abdominal/Pelvic MRI (MBBS, FRANZCR)
Dr Mathew Leonardi, Gynaecologic Surgeon/Sonologist, Endometriosis Researcher (MD, PhD(C))
Dr Tran Nguyen, Gynaecologist (MBS, MHA, MRMed, FRANZCOG)
Dr Beck O’Hara, EndoZone Project Coordinator, Endometriosis Researcher (PhD)
Melissa Parker, Endometriosis Coordinator and Researcher (RN, RM, MNurs(Research)) FRCSC)
Libby Trainor Parker, Endometriosis Advocate (Bed,Grad Dip Journ)
Tegan Phillips, Endometriosis Western Australia
Dr Amelia Pilichiewicz, Accredited Practising Dietitian (BSc (Hons), MNutDiet, PhD)
Fiona Rogers, Physiotherapist (BPthy GD ExSpSc APAM)
Sonia Scharfbillig, Physiotherapist (MMusc&SportsPhysio, APA Continence and Women's Health Physio, DipClinHyp)
Dr Diksha Sirohi, CAM Practitioner and Endometriosis Researcher, (BHMS, MPH, PhD Candidate)
Prof Helen Slater, Clinical Pain Researcher and Specialist Musculoskeletal Physiotherapist (PhD, FACP)
Kat Stanley, Endo Help Foundation
Emily Trusler, Endo Help Foundation
Dr Leesa Van Niekerk, Clinical Psychologist & Lecturer, Endometriosis Researcher (PhD)
Sarah Walsh, Pelvic Health Physiotherapist (MPhysio (Manip), PGCertPhysio (Pelvic Floor))
Heather Warne, Occupational Therapist (BAppScOT)
Design and Implementation
Sarah Eley, Robinson Research Institute
SRA Information Technology
Brainium Labs
SciAni
Richards Rose
Minter Ellison