A research team based at the University of Canterbury are currently recruiting Māori and Pasifika participants for an anonymous online discussion focus group about the perspectives, experiences, and priorities of Māori and Pasifika endometriosis (mate kirikōpū) patients in Aotearoa New Zealand. This information will be used for doctoral research at the University of Canterbury.

Participants must be over 18, reside in Aotearoa New Zealand, and have either a working diagnosis with their GP or OBGYN or a confirmed diagnosis of endometriosis after surgery. Participants will receive a $20 online voucher as a thank-you for their time and contribution to the study.

The discussion forum aims to put patient experiences at the centre of future research plans.

The online discussion focus group will run over five days and take about 120 minutes in total. Participants can break this time commitment down into as many smaller intervals as required, at times that suit them. If you decide to participate, you will answer a series of set questions and then see other participants’ responses. You will then have the option to read other perspectives, respond and engage with other participants.

To receive more information and a consent form, please contact Katie Ellis at khe71@uclive.ac.nz

Patients Information Sheet

Read the Patient Information Sheet and complete 10 min survey here

This project is being conducted by a team of researchers at the University of Tasmania, Deakin University, Western Sydney University, University of Otago, and the EndoHelp Foundation. The research is coordinated by Dr Leesa Van Niekerk, a clinical psychologist and researcher in the School of Psychological Sciences, University of Tasmania. The project focuses on the experience of heavy period bleeding or pelvic pain in adolescents and beliefs about period pain and heavy bleeding. The team would like to understand more about how heavy periods and pelvic pain experienced by adolescents influences the way they view themselves and their body. They would also like to understand the role primary caregivers (e.g., parents, foster parents, grandparents) have in shaping a young person’s beliefs about periods. Most research explores the views of either the young person or caregiver, but they are keen to understand whether these views are similar or different by having both people take part in the research.

Patient Information Sheet

Register your interest here

Researchers from NICM Health Research Institute and the School of Business at Western Sydney University are interested in finding out about the uptake of, and experiences people with endometriosis are having with life, income protection, permanent disability, trauma, and private health insurance. It is uncertain how endometriosis impacts the ability of people with endometriosis to obtain, afford, manage and claim on these insurances.

This information will help them better understand the role that insurance plays in managing the risks and costs associated with endometriosis and how insurance might help patients, their families, and the community better manage financial and health-related quality of life issues associated with endometriosis management.

Patient information Sheet

Participate here

The aim of the project is to get an idea about the views that endometriosis sufferers hold about exercise and what experiences they have had with exercise. Particularly, they would like to know what type of exercise you are doing/have done, how often,  and what impact it has/had on your symptoms. The survey is stage 1 of the project and will be followed up by some focus group sessions to get a bit more information/detail from you about your thoughts surrounding exercise.

Your participation will be a valuable addition to this research, and the study will contribute to a greater understanding of what type, duration, and frequency of exercise women with endometriosis do on a regular basis, as well as how it affects their endometriosis-related symptoms. This will help us to provide a rationale for more research into this area in the future, generate greater awareness of endometriosis and possible self-management tools for the ongoing symptoms of endometriosis, and possibly develop exercise-related guidelines for health practitioners to support and treat endometriosis sufferers more effectively.

Patient Information Sheet

Survey

This research project seeks to explore the facilitators and barriers to the timely diagnosis of endometrios1s in Aotearoa New Zealand.

They looking for women who are aged 18 years or older who have a confirmed diagnosis of endometriosis to share their journey to receiving a diagnosis in Aotearoa New Zealand.

Participants will be required to complete an online survey that will take approximately 30 minutes. As a thank you for your participation, upon completion of the survey participants can enter the draw to win a $100 Prezzy card.

If you have questions or concerns, please do not hesitate to contact Briana.

Patient Information Sheet

Survey link

Francesca Hearn-Yeates is a PhD student at the University of Edinburgh working under the supervision of Professor Andrew Horne and Professor Philippa Saunders, researching the relationship between diet, the gut microbiome, and pain, in endometriosis.

She has recently launched an international online survey as part of her project to gather information on typical diets and supplements used by people with endometriosis, the perceived benefit of the diets, and where they sourced the information and advice to adapt their dietary habits.

They have heard a lot of anecdotal evidence from patients in the UK about the benefits of different dietary modifications and therefore the aim of her PhD project is to provide a basis of clinical evidence. This survey will identify the range of different diets and supplements used and associated trends with pain levels.

It is completely anonymous and should only take around 10 minutes to complete.

The survey link is: https://corexmsx3mfhpx69skzk.qualtrics.com/jfe/form/SV_5v61270ROh5AKTc

Endometriosis New Zealand partnered with the Medical Research Institute of New Zealand (MRINZ), Gynaecology Group and Repromed, Canterbury District Health Board, University of Otago, University of Auckland, Te Herenga Waka — Victoria University of Wellington, Oxford Women’s Health at Forté Health, and Western Sydney University’s NICM Health Research Institute and Translational Health Research Institute to develop the study ‘An Aotearoa New Zealand survey of the impact and diagnostic delay of endometriosis and chronic pelvic pain’.

Click here to read the full research paper

Chronic pelvic pain (CPP) research in Aotearoa New Zealand, as with the rest of the world, is a small but growing field, and the impacts of CPP on life are starting to be acknowledge and understood, within and beyond the healthcare professions. Despite some shifts, CPP remains relatively poorly understood, both in terms of life impacts and in relation to experiences related to acknowledgement and treatment of the condition. Seeking diagnosis and healthcare is often complex and challenging. This research aims to build in-depth understanding of the realities of CPP and its impacts on everyday life, as well as healthcare experiences, to better inform healthcare practices in Aotearoa New Zealand.

Aims and objectives

• To gain insight into contemporary experiences of living with CPP in Aotearoa New Zealand.
• To contextualise the experience of living with CPP in Aotearoa New Zealand.
• To enhance and developed the Aotearoa New Zealand-specific knowledge through the lived experience of persons with CPP.
• To develop a rich understanding of the challenge’s persons with CPP encounter in their social, familial, and spiritual lives.
• To develop a nuanced understanding of the challenges people with CPP encounter when navigating the Healthcare System.
• To explore the ways people with CPP situate themselves in relation to disability and experiencing an invisible illness.

If you are interested please read the below information, and contact Michaela Callaway, mcha617@aucklanduni.ac.nz, to register your interest.

Patient Information Sheet

Study Protocol

We are to inviting you to help in the recruitment for a study conducted by researchers at the University of Auckland (Dr Theresa Mittermeier, a GP, Dr Joy Marriott and Dr Wendy Burgess gynaecologists) along with Dr Mike Armour, a senior health researcher at Western Sydney University and Deborah Bush, Founder of Endometriosis NZ

The aim of the study is to improve the understanding of the symptoms and experiences of young people with periods in New Zealand / Aotearoa. Many young people experience symptoms such as pain or heavy bleeding with their period which may affect many areas of their life, such as their studies, social activities, mood and confidence. We are looking to improve the education and health care young people receive about periods. The research team understands that some people who have periods do not identify as female. This survey is open to people of all genders who have periods.

To be able to take part in this study, participants need to be:

• Aged 13-25 years
• Currently living in New Zealand
• Have had at least 3 periods
• Able to speak and understand English and the research information provided

Patient Information Sheet

Information sheet for parents/whānau

Complete survey

If you think a school, or organisation may be able to help, they can download the poster with a QR code for the survey.

Poster with QR code

Research Aim and Objectives

The aim of this study is to explore the experience of transgender men living with endometriosis. This research may fill a gap in understanding this disease’s impact on transgender men; and living with a disease that is associated as primarily a woman’s disease.

In this proposed study, I will explore the aim of the study by means of the following four objectives:

• To explore the effect the transgender male with endometriosis experiences in living with a disease that is primarily associated as a woman’s disease.
• To gain an understanding of the experience of psychosocial support received and gaps in support of transgender men with endometriosis.
• To explore how transgender males with endometriosis perceive their healthcare in relation to endometriosis.
• To explore how transgender males with endometriosis experience their integration and reception into the endometriosis community, with the majority of endometriosis patients consisting of women.

Download Patient information & Consent Form

Download Intake form

Chloe now has enough participants and she thanks everyone that made contact with her.