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Counting the wins: How activism is changing the story of endometriosis  

Women holding signs which say 'use your voice', 'together we rise', and 'do your part'.
Women holding signs which say 'use your voice', 'together we rise', and 'do your part'.

Australia is finally set to change the story of endo: and it is people who live with endo who have led the charge! 

An estimated 1 in 10 women and folk who have a uterus also have endo. It’s a condition where tissue similar to the uterus lining grows outside the uterus. It causes pain, fatigue and in some cases also affects fertility.  

The folks who live with endo often tell you a story with a theme: crippling pain during periods that made it hard to go to work, school or just do their lives combined with a long, long road to getting diagnosed.  

Many people with endo share stories of being dismissed by health professionals, of feeling alone and like they’re the only one and of that patriarchal classic; having their pain written off as normal.   

For a long time, there’s been a real lack of awareness about endometriosis on the part of doctors, workplaces, the general public and people who live with the condition.  

But all that is changing. And it’s people with endo that are really calling the shots.  

Activism gets results.  

Activism has helped to raise awareness of endometriosis in Australia, leading to big moves on the part of government, increased funding for research and better access to treatments. 

Progress was finally made in 2018. After extensive organising and lobbying by lived experience advocates and their allies the National Action Plan on Endometriosis was developed. This is a huge deal.

Advocates have been trying to get action on endometriosis at a federal level since at least the 1980s and this plan is aimed at improving awareness in the general community and getting the clinical support that’s needed. As a result, the Federal Government recently announced funding for more than 20 Endometriosis and Pelvic Pain Clinics around Australia.  

And Tassie has one too! Our very own Family Planning Tasmania has received funding so stay tuned for more details on that.  

Beyond this, activist groups like EndoActive continue campaigning to have endometriosis recognised as a disability. If they’re successful it may mean that endo sufferers could access disability benefits and other forms of support. Given the crippling effects of endo, activists think they have a strong case. 


Endo in the workplace is also being addressed. The Endo@Work initiative is a partnership between Endometriosis Australia and academics at the Health Research Institute. They’re exploring what it is that people living with endo need in their workplaces and making recommendations for employers based on what people living with endo know works.  

Stories change the world as well as the storyteller  

The incredible organising and determination of endometriosis advocates and campaigners shows that, collectively, our stories can make big change in the world! But are there other benefits to telling your story? 

Endometriosis campaigner and lived experience advocate, Sylvia Freedman told The Guardian newspaper recently that telling her story of endo actually helped her feel more empowered, stronger and like she was taking back control.

“I was really sick but the effect it was having and the power I started to feel through sharing my story, I felt like I was sort of reclaiming endo as my own and it wasn’t owning me anymore,” she said. “That was really pivotal to me feeling physically better.”1 

Telling your story, connecting with others, and demanding change collectively: It gets results and can support changing your personal story to one of strength and resilience.  


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