Endometriosis: Understanding the impacts and driving positive change

Endometriosis has gone under-researched, under-acknowledged & under-funded for too long. Here’s what needs to change


This March for Endometriosis Awareness Month, Women’s Health Services across Victoria are banding together to shine a much-needed spotlight on endometriosis, a condition that affects one in 9 women in Australia.

It’s just a bad period. It’s all in your head. You don’t look sick. Have you tried taking some paracetamol or drinking herbal tea? Why don’t you just get pregnant?

Women in Australia who experience endometriosis have probably heard these comments many times over. While they may be well intentioned, suggestions such as these can come across as dismissive of a person’s experience and may, in fact, prevent sufferers from seeking treatment.

Endometriosis (endo), a common disease also experienced by trans men and non-binary people, occurs when tissue that is similar to the lining of the uterus grows outside of the uterus causing extreme and often debilitating pain.

While it’s normal to experience minimal and mild discomfort or bloating while on your period, severe or debilitating pain that prevents you from doing day-to-day activities like school and work, are not things that should be ignored.

But this is exactly what happens when it comes to endo. Women’s chronic pain is routinely dismissed, disbelieved or minimised, which contributes to the average seven to 12-year delay in diagnosis. There is currently no cure for endo.

Not only does the condition negatively affect a person’s life through pain and management of chronic illness, endo also has impacts on mental health and wellbeing, intimate relationships, employment and education.

Medical practitioners don’t have access to reliable and accurate information due to a lack of research into women’s sexual and reproductive health. This gap in knowledge results in poor diagnosis and treatment of endo, and the dismissal of chronic pain.

How are health workers equipped to identify and treat endometriosis? In Australia, anyone can claim to be an endo specialist; there is currently no standardised way to become a specialist. What is required is the introduction of clearer processes for the professional development necessary to be a qualified endo specialist.

Currently, guidelines are being developed for all health professionals to provide best-practice care of people living with endo. This is a crucial step to improve consistent care for the estimated 830,000 women, girls, trans men and non-binary people affected by endo in Australia.

The more we know about and understand the condition, the better we can support those living with it. Employers, educators, partners, and family all have a part to play, whether that is being a supportive partner, acknowledging lived experience, implementing reproductive leave at work, or providing education on menstrual health.

Healthcare professionals, including general practitioners, nurses and allied health play a key role in the diagnosis and management of endo, which is why it is so important they are supported and trained to provide best practice care.

A continued commitment to funding and research is also essential to reduce the delay in diagnosis and to improve health outcomes. Endo can cost individuals up to $30,000 per year – this includes everything from absenteeism from work to the cost of appointments, medication, and travel. 

Additionally, everyone living with endo deserves quality healthcare and the support they need to live with a chronic illness, including symptom management, mental health support, multilingual health information, gender affirmative healthcare and peer support.

As a community, we can help drive the positive change that is needed to better identify, treat and ultimately prevent endo, so that people living with this condition can have self-determined management of their health alongside quality healthcare, and support networks.

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