Imagine living with so much pain that you’re unable to go to work, let alone carry out any of your other everyday tasks.
Well, that’s the reality in Australia for “more than 830,000 women, girls and those who are gender diverse, [who] suffer from endometriosis at some point in their life”.
Globally, according to the World Health Organisation, the condition affects around “10 per cent of reproductive-age women and girls”.
Endometriosis is a chronic disease and prevalent health concern for many women and those that identify as gender diverse. It occurs when “tissue [endometrium] that is similar to the lining of the uterus occurs outside this layer and in other parts of the body causing pain and/or infertility”.
The symptoms associated with endometriosis, include:
- Fatigue.
- Pain that stops you on or around your period.
- Pain on or around ovulation.
- Pain during or after sex.
- Pain with bowel movements.
- Pain when you urinate.
- Pain in your pelvic region, lower back or legs.
- Having trouble holding when you have a full bladder or having to urinate frequently.
- Heavy bleeding or irregular bleeding.
However, the symptoms associated with endometriosis are variable and broad, meaning that diagnosis isn’t always easy, which can cause lengthy delays between the onset of symptoms and diagnosis. In fact, Endometriosis Australia (EA) says it can take, on average, six and a half years to be diagnosed with endometriosis.
Endometriosis has significant social, public health and economic implications and can decrease quality of life due to severe pain, fatigue, depression, anxiety and infertility, says the WHO, and some individuals with endometriosis experience such debilitating pain associated with the disease that it prevents them from going to work or school.
With no cure currently available for endometriosis, this makes support so vital for these women – the ‘endo warriors’ – who live with this condition every day.
To address some of the social and public issues associated with endometriosis, Endo@Work, a research initiative and partnership between EA and leading academics, is aiming to end inequality in the workplace for people living with the condition in Australia.
In a study that began earlier this year, researchers from Western Sydney University, Southern Cross University (Lismore, NSW), University of St Andrews (Scotland) and the University of Technology Sydney are seeking to understand the perceptions and experiences of individuals with endometriosis in the workplace, as well as explore organisational perspectives on providing practical and appropriate support, and draw on these experiences and perspectives to shape guidelines and recommendations for Australian employers.
EA CEO Alexis Wolfe points to the pressing need for workplace assistance programs specifically designed to support employees and employers navigate discussions in the workplace about endometriosis.
“Through our collaborative project, Endo@Work, we’re calling on employers and employees to be part of the change needed to better support those living with endometriosis in Australia in the workplace.
“The Endo@Work project aims to develop a set of co-created recommendations for Australian employers, similar to those being developed for menopause in many countries around the world.
“These recommendations will provide advice and guidance specific to their industry and empower individuals living with endometriosis to engage more fully in work, while still supporting their wellbeing.
“This important project forms a crucial part of the Australian government’s recently funded workplace assistance program.”
Dr Mike Armour, Research Project Lead, Senior Research Fellow at Western Sydney University’s NICM Health Research Institute and Chair of EA’s Clinical Advisory Committee, says little research has been undertaken to guide Australian employers to implement supportive policy and practice in Australia.
“The first phase of the three-year project is a national online survey that will explore how people with endometriosis manage their symptoms at work, what kind of support they get and what their priorities are for helping improve their symptom management while working,” he said.
“This survey is open to anyone in Australia who has a diagnosis of endometriosis from their doctor and is aged 18 or over. Even if you’re not currently employed, we’re interested to hear about your previous experiences at work.”
Endo@Work will involve more than 400 people with endometriosis in Australia, along with employers from a variety of industries.
For more information, visit:
- Endo@Work: nicm.edu.au/research/research_projects/endoatwork
- Endometriosis Australia: endometriosisaustralia.org
This feature was originally published in the September issue of Retail Pharmacy magazine.
