Milli Weaver juggles a busy life filled with work, studying law, spending time with family and friends, and running an organisation to support people who have the same chronic illness she does: endometriosis.

It’s a disease experienced by at least one in nine Australian women or girls, and those assigned female at birth, but there is still a lot of stigma and misinformation, and a lack of meaningful support systems. 

Activists like Weaver are working to change that, and have contributed to raising the profile of endometriosis.

“Events, coffee, catchups… all these kinds of things help to build a sense of community and can help people feel less alone,” she says. “It’s a really lonely disease, but there’s a lot of us.”

Endometriosis is a chronic illness which can cause extreme and ongoing pain, fatigue, nausea, and can impact on fertility. It is only formally identified by undergoing a surgery called a laparoscopy, and the average Australian patient waits seven years for a diagnosis. 

Asked why a diagnosis takes so long, the 25-year-old sighs. “I think a lot of it comes down to people thinking it’s ‘just a women’s disease’. There’s so much stigma around periods and talking about them. Endometriosis is very much put in the ‘too hard’ bucket.

“The amount of funding dedicated towards endometriosis is significantly less in comparison to diseases that have the same prevalence and affect similar numbers of people.”

In 2018 the Morrison government announced a four-year, $87 million funding package dedicated to research, awareness and education, and clinical management and care.

But it also raised questions about how the money was being spent.

“Why weren’t pelvic pain physiotherapists, or specialists in women’s health consulted as to what these clinics could actually deliver?” asks Weaver. “It could be really incredible, but there’s limited transparency as to where that money is actually going.

“Personally, I would love to see that money going towards better rebates for chronic healthcare plans, things like physiotherapists, specialists, and pain relief.” 

In March, the Albanese government announced 20 new clinics across the country dedicated to increasing support for endometriosis sufferers.

Assistant Minister for Health and Aged Care Ged Kearney said the government is committed to improving women’s health, and that “this is a crucial step forward for a part of the population that has too long been dismissed”. 

Weaver was diagnosed at age 19, providing some desperately needed relief from the constant pain, fatigue, and nausea she has experienced since she was 13.

“I spent a lot of time in emergency departments, spent a lot of time at the GP, and I was constantly told ‘some girls get bad periods’,” she says. 

Dr Natasha Andreadis, a gynaecologist and fertility specialist who regularly works with endometriosis sufferers and stresses the importance of early diagnosis, says: “Healthcare providers should listen to women carefully and have a low threshold for thinking ‘could this be endometriosis?’

“A woman is never too young to have endometriosis.” 

I was thinking, hang on, one in nine people have this disease. Why isn’t anyone talking about it?

After struggling alone for years, starting the @EndoArticles Instagram page allowed Weaver to create the community she craved, and raise awareness about her illness. The group’s events in particular have been an enormous support.

“I suddenly had all these people around me who had my story, who were my age, who could empathise with my experiences and add to them,” she says. “And I was just thinking, where has this been my whole life?” 

She wasn’t alone in this isolation. Group member Megan shares a similar story.

“The Endo Articles community saved my life. Literally,” she says. “Without it, I’m not sure I would be here today.” 

Another member, Jaimi, says the organisation helped her feel seen and heard, adding: “It has been a massive help to me, and I just wanted to say thank you.”

Weaver describes feeling dismissed by medical professionals. She had been told repeatedly not to worry about her reproductive health, so she was shocked to discover that at the age of 21, she had the fertility of a 50-year-old. She then made the difficult and expensive decision to undergo fertility treatment. 

“I thought to myself, I can’t be the only one,” the activist explains.

That’s why she recently hosted an event which featured a panel discussion and question forum where other Endo sufferers heard from Dr Andreadis, as well as  two women who have frozen their eggs. 

Dr Andreadis, who has a focus on helping those who experience chronic pain, hosts the podcast Integrative Gynaecology as Dr Tash.

“Endometriosis has a significant impact on women, and society as a whole,” she says.

“I’ve seen people quit their jobs and have relationships break down over it. It is not normal to have debilitating period pain every month. 

“Women should seek out healthcare providers who listen to them. Importantly, women should listen to themselves – follow that gut instinct.” 

Weaver spoke about her own experience at the event, adding she doesn’t want others to feel as alone as she used to.

“I was thinking, hang on, one in nine people have this disease,” she says in reference to Australian Government research published four years ago. “Why isn’t anyone talking about it?” 

Despite the high figure, endometriosis is likely underreported and underdiagnosed. 

If you’re struggling with Endometriosis, you can access help, information, and support Australia-wide through the Endo Help Foundation, or Sydney based support through the Endo Articles community. Endo Articles offers events, information, community support, free meals, and more. 

Main image of Endo Articles community event supplied by @EndoArticles