Endometriosis New Zealand partnered with a research team based at the University of Canterbury | Te Whare Wānanga o Waitaha to gain insight into the perspectives of endometriosis patients, their friends, and whānau.
This was the largest survey ever of endometriosis patients in Aotearoa New Zealand with over 1000 participants!
The results showed that endometriosis research should focus on improved management, faster diagnosis, and understanding the cause of endometriosis – all to work towards a cure. Huge thanks go out to our community for participating in this research and having your voices heard!
One of the core findings was that the average delay to diagnosis for New Zealand patients is almost a decade as 9.7 years.
This is an increase from 8.7 years that was previously reported in 2022.
You can now see the full results of our recent survey where 1000 individuals shared their experience with us and we heard that the delay to diagnosis in New Zealand is increasing.
Endometriosis New Zealand would like to acknowledge the support from Endometriosis Australia to guide the structure from their Research Fund. The Endometriosis New Zealand Research Priorities Survey questions are based on the 2023 Australian survey published in ANZJOG by Armour et al.
Endometriosis is a complex and poorly understood condition despite it affecting at least 1 in 10 women, girls and those assigned female at birth in New Zealand. Many of these individuals are faced with overwhelming challenges.
Research into endometriosis is vital to develop new methods to diagnose and treat the condition to improve the lives of patients and reduce the impact of the disease.
Endometriosis New Zealand is working to progress vital endometriosis research in New Zealand with the aim of enhancing understanding of endometriosis. Our work will be based on the priorities of endometriosis patients and their family/whānau and supporters utilising research conducted in 2023.
We will update this page regularly with the latest developments. You can join our database or follow our social media for regular updates.
Endometriosis New Zealand is partnering with a research team based at the University of Canterbury to gain insight into the perspectives of endometriosis patients, their friends, and whānau. This will be conducted through a survey that aims to identify what the priorities are for endometriosis research.
The findings of this study will be used in the development of the Endometriosis New Zealand Research Fund, due to be launched in 2024.
This research project is being conducted by the University of Canterbury | Te Whare Wānanga o Waitaha and Endometriosis New Zealand. This study is being run by Katherine Ellis from the University of Canterbury, and Endometriosis New Zealand. Other research team members include Dr Rachael Wood from the University of Canterbury.
This survey is now closed for analysis.
Endometriosis New Zealand would like to acknowledge the support from Endometriosis Australia to guide the structure of this fund. The Endometriosis New Zealand Research Priorities Survey questions are based on the 2023 Australian survey published in ANZJOG by Armour et al.
Researcher: Julie Ludwiczak, University of Auckland
Our research aims to increase our understanding of the reality of getting an endometriosis diagnosis through the New Zealand healthcare system. Specifically, we are interested in your experience of feeling cared for by the overall system during the period when you were seeking a diagnosis.
What’s involved?
Participation involves answering a 10-15 min anonymous online questionnaire & can be completed on any device at any time!
Eligibility
We are welcoming anyone over 18 years that has been diagnosed with endometriosis in New Zealand to share their experiences through an anonymous online survey.
For more information, please feel free to contact me, Julie Ludwiczak (student researcher, Master of Health Psychology Student, Department of Psychological Medicine): Jlud431@aucklanduni.ac.nz
Approved by the Auckland Health Research Ethics Committee on 17/11/23 for three years. Reference Number: AH26356.
Researchers: Ashlee Berryman, Student Researcher & Dr. Liana Machado, Principal Investigator,
This study is the very first of its kind, aiming to objectively measure cognition among individuals affected by endometriosis. The ultimate goal is to better understand the cognitive profiles of individuals with endometriosis to empower and enhance their quality of life.
Why is this research vital? Endometriosis affects millions of people worldwide, and its symptoms can be challenging to manage. By delving into the cognitive aspects, we hope to provide a deeper insight that will lead to more effective treatments and support.
Participate and make a difference: We’re looking for enthusiastic participants to join us in this ground-breaking research. Your contribution will involve some cognitive tests and wearing an EEG cap (a bit like a swimming cap), and is a fantastic opportunity to advance our understanding of endometriosis.
Compensation: To express our gratitude for your invaluable time and effort, participants will receive $25 as compensation.
How to Get Involved: If you or someone you know is interested in participating and contributing to a worthy cause, please contact Ashlee Berryman [ashlee.berryman@otago.ac.nz].
Researcher: Dr Siobhan Healy-Cullen, Massey University, Wellington
Siobhan is working on a research project looking at people’s experiences of using menstruation tracking apps (also known as period or fertility tracking apps). 500 million people worldwide use these apps, but we know little about how users experience them. And even less on user experiences of people who are:
We are hoping to speak with people from these three life stages, and also those who are often left out of research, including:
Researcher: Dr Claire Badenhorst; Senior Lecturer, School of Sport, Exercise, and Nutrition, College of Health. Massey University, Auckland
The study looks at menstrual cycle features (mainly ovulation) and the risk of iron deficiency. In this study we want to see if there are phases of the cycle that may be more responsive to iron supplementation, and if the absence of ovulation (anovulatory cycle) and changes in menstrual cycle reproductive hormones increase the risk of heavy menstrual bleeding and iron deficiency. Everyone always just says females are prone to iron deficiency because we menstruate, but no one has actually considered how or why some females are more at risk than others. Information gathered will include collected blood samples, height, weight, muscle and fat mass, urinary ovulation tests, estimated menstrual blood volumes, noting menstrual symptoms:
Total face-to-face time for data collection at Massey University over the 6 months includes:
First visit: 45-60 minutes
3 x in-person sessions: 15-30 minutes each
2 x in-person end-of-cycle blood tests: 5-10 minutes each
Final session: 15-30 minutes
Total: 200 minutes (3-3.5 hours) over 6 months
Want more info: text, call 021 220 0092, or email FemaleHealthResearch@massey.ac.nz
Researchers: Dr Chloe Parton, Lecturer in Health Psychology at the School of Health, Te Herenga Waka-Victoria University of Wellington and Dr Alexandra Hawkey, Research Fellow, Translational Health Research Institute, Western Sydney University.
This project will explore how individuals with endometriosis experience motherhood and family relationships. This knowledge will enable health professionals and community organisations to better meet the needs of mothers with endometriosis and their families. However, the outcomes of the study may not directly benefit you.
The findings from the study will increase understanding about the impact of endometriosis on everyday life as a mother, as well as providing knowledge about the role of family relationships and other potential forms of support in mothers’ lives.
This survey is open to mothers who are:
• Aged 18 years or above
• Who have received a diagnosis of endometriosis
• Who are have a child aged 18 years or under (including non-biological children)
The survey will take approximately 30 minutes to complete.