Endo at Work

There is a real need for workplace assistance programs specifically designed to support employees and employers navigate discussions in the workplace about endometriosis.

Endo@Work, a research initiative and partnership between Endometriosis Australia and leading academics, is aiming to end inequality in the workplace for people living with endometriosis in Australia.

The project seeks to understand perceptions and experiences of individuals with endometriosis in the workplace; explore organisational perspectives on providing practical and appropriate support and draw on these experiences and perspectives to shape guidelines and recommendations for Australian employers.

The research team from Western Sydney University, Southern Cross University, University of St Andrews (Scotland) and the University of Technology Sydney are undertaking a survey of people's experience of, and views on endometriosis in the workplace. This survey is the first stage of the Endo@Work project.

Previous research by the team found that almost 8 out of 10 people living with endometriosis reported changes in the workplace due to COVID. This included being able to work from home and having flexibility with taking breaks. Participants from the past research reported such changes in how they worked allowed them to manage their symptoms better and resulted in over 60 per cent reporting they felt more productive. Most people living with endometriosis report they have to take regular unpaid leave to manage their symptoms. This puts an extra financial burden on people who are already living with a very expensive disease, putting an extra financial burden on people and their families. Currently, there is guidance from Safe Work Australia on supporting those living with endometriosis in the workplace. However, the research team's recent studies suggest that despite this, people with endometriosis do not feel supported and still need to take on average over four sick days per month, often unpaid.

Endo@Work project aims to develop a set of co-created recommendations for Australian employers to provide advice on how to better support people with endometriosis specific to their industry and importantly empower individuals living with endometriosis to engage more fully in work while still supporting their wellbeing. The research team anticipate these recommendations will also help reduce the financial burden that endometriosis creates.

Who can participate?

The study is suitable for people who :

  • have a diagnosis of endometriosis
  • are aged 18 years or over
  • currently live in Australia
  • have been employed in the past 3-months

Note: Employment can be full-time or part-time, and you can also be self-employed, volunteering or working for family or friends. If you have not been employed recently, you are invited to still participate in the first part of the study.

What's involved?

  • You will be required to complete a short 20-25-minute questionnaire about your views and experiences. This survey is completely anonymous – no information collected in the survey can be used to identify you.
  • At the end of the survey if you would like to be involved in the further upcoming online workshops to discuss your work experiences you can provide your contact details through a separate form. These are not stored with your survey responses and your contact details cannot be linked with your answers.

How to participate

The research team thank everyone who participated in the first stages of this project.

The data is now being analysed and the next stage will be to engage with employers.

Employer Focus Groups are scheduled for October/November 2023.

Contact person for information and recruitment

Associate Professor Mike Armour
NICM Health Research Institute, Study Chief Investigator 
e.     m.armour@westernsydney.edu.au

The survey has been approved by the Western Sydney University Human Ethics Committee - approval H14770. The  Endo@Work Project is funded by a partnership grant between Western Sydney University and Endometriosis Australia.

Endo@Work's multidisciplinary research team includes Dr Mike Armour, Dr Sarah Duffy, Dr Michelle O'Shea, Associate Professor Emilee Gilbert and Dr Alex Hawkey from Western Sydney University, Associate Professor Linda Steele from University of Technology Sydney, Dr Lara Owen from the University of St Andrews, and Professor Jon Wardle from Southern Cross University.