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.