Experiences with Endometriosis and Polycystic Ovary Syndrome in Aotearoa New Zealand

Principal Investigator

Dr Jane Girling

Department of Anatomy Senior Lecturer

Any questions please email menstrualhealth@otago.ac.nz 

Polycystic Ovary Syndrome (PCOS) and endometriosis are two common conditions affecting many individuals in our community. While these two conditions are known to co-occur, no research has been conducted to understand how they interact and the consequences this can have.

We are looking for participants for a study that begins to untangle PCOS and endometriosis. We’d like to hear from you if you have been diagnosed with PCOS and/or endometriosis, are 18 years of age or over and living in Aotearoa New Zealand and are willing to tell us about your experience with PCOS and/or endometriosis. The study will involve an anonymous 20-minute online survey and ask you a range of questions about your experiences, symptoms, diagnosis, and treatment.

Think this is something you are interested in? Read the Patient Information sheet first.

Patient Information Sheet

Survey

 

Experiences of chronic pelvic pain in Aotearoa New Zealand

Principal Investigator
Professor Virginia Braun
School of Psychology, The University of Auckland

v.braun@auckland.ac.nz

Student Researcher
Michaela Callaway
Masters student
School of Psychology, The University of Auckland

mcha617@aucklanduni.ac.nz

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

Exploring the needs and experiences of young women in New Zealand / Aotearoa with period symptoms

Primary Investigator: Dr Theresa Mittermeier

Clinical Fellow, Department of Obstetrics & Gynaecology General Practitioner

Email: theresa.mittermeier@auckland.ac.nz

Endometriosis New Zealand (ENZ) is committed to facilitating and supporting research to develop a greater understanding of women’s health issues, particularly relating to endometriosis.

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 women 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 women 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

As thanks, you can opt-in to enter a draw to win one of two $100 Farmers Vouchers.

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

 

Transgender Men’s Experience of Living with Endometriosis: A Hermeneutic Phenomenological Study

Cheryl Eder

cje@live.co.za

Phone or whatspp: +36707242313

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

The experience of young females in New Zealand with a diagnosis of endometriosis

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

ENDOCOST Survey

We would like to thank those of you who participated in this incredibly important study.  Your efforts will provide NZ data to support our efforts to improve health outcomes for those with endometriosis and adenomyosis, with Government and the Ministry of Health.  We appreciate this so much.  What happens now is that the manuscripts have to go through a very robust process to analyse the data which will likely take months. We will keep you in touch with developments when we are advised by the lead researchers.

Research

ENZ fosters research and evaluates and audits its programmes through assessment systems, peer review and Quality Assurance controls. Members of the ENZ Trust Board have made a significant contribution to endometriosis related research and investigations and are widely published.


Endometriosis Education in Schools: A New Zealand model.

Endometriosis Education in Schools
The ME Text programme research is now published in ANZJOG (Australia New Zealand Journal Obstetricians and Gynaecologists).

The report is the first piece of literature of its kind globally which examines the outcomes of a health education programme in schools and assesses whether it makes a difference.

ME Text was a concept which sprang to life in 1997 – two decades ago! It is now a proven educational program and well accepted in secondary schools in New Zealand. It has reached hundreds of thousands of students throughout the country. This news will hopefully influence change for girls and young women who have symptoms suspicious of endometriosis.


Endometriosis education in schools: A New Zealand model examining the impact of an education program in schools on early recognition of symptoms suggesting endometriosis.


Endometriosis New Zealand

Endometriosis NZ Research

Our CEO Deborah Bush is a co-author of the widely acclaimed ‘The $6 Billion Woman and the $600 Million Girl’ report released in 2011. This report was an Australian initiative to address human and fiscal burdens associated with conditions causing pelvic pain. Help support ENZ research. Help us help others by contributing to ENZ research projects.  This is a way to bring to the attention of government and decision makers to change ‘what is’ into ‘what should be’.

Patient Partnering at MidCentral DHB has been independently assessed. The outcomes strongly support the programme. (K. Renner and P.V. Stephens.  Post-thesis research. Massey University)  (K. Renner and P.V. Stephens. 2009).


Consensus on current management of Endometriosis

The First global consensus on endometriosis published in Human Reproduction Hum Reprod 2013 [Epub]Johnson NP and Hummelshoj L et al;. Fifty-six representatives of 34 national and international organisations, came together in the consensus meeting in Montpellier in 2011, to agree on the current management of endometriosis. The group met again in Brazil and is working on another manuscript which will add to the literature and pragmatically help patients and clinicians alike.

What is of huge significance is that Endometriosis NZ played a central role in this World Endometriosis Society initiative.  Ms Deborah Bush QSM represented endometriosis organisations worldwide and Dr Neil Johnson was primary author of the consensus document on behalf of the World Endometriosis Society.  Professor Cindy Farquhar was also involved as a presenter. The consensus allowed different perspectives to be heard in one forum around the same table: clinicians, surgeons, scientists, women with endometriosis, and industry – women’s voices which had previously not been heard.  Whilst maintaining its services and programmes, ENZ will continue to work with others at this unprecedented level to ensure improved health outcomes for all women and girls with endometriosis.


Endometriosis.org

www.endometriosis.org/topic/news/research continually updates international research, forums, interviews, papers and articles, providing an in-depth and current overview


World Endometriosis Research Foundation (WERF)

www.endometriosisfoundation.org
The World Endometriosis Research Foundation (WERF) was created in 2006 as the first global charity to foster research in endometriosis to improve knowledge and treatments. It has a vision of a day when no woman is crippled by endometriosis nor prevented by the disease from having children.  ENZ supports the efforts of this global research foundation.


Strength through support - mā te tautoko, ka whai kaha, ka ora

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