One Wellington woman living with endometriosis is using the disease as inspiration to provide better support, education and advocacy for the more than one in ten New Zealanders who live with the condition and wait, on average, eight years to be diagnosed.

Jess Sandoval set up Endo Warriors in 2020 to advocate for better medical care, and transform the conversation around menstruation and endometriosis - empowering people to lead healthier, more informed lives.

HELL is partnering with Endo Warriors to raise $66,666 for the grassroots charity by selling more than 4,400 of its specially designed Undies for Endo, part of the organisations’ Fight Like Hell collaboration.

Endometriosis is a condition where tissue similar to the womb lining grows outside of it in other parts of the body, causing pain, infertility and other serious issues. Sandoval says NZ needs to do more to advance research and could follow the example of Australia, which last year dedicated nearly $60 million to specialised research and treatment centres. In a world-first, Sydney researchers grew tissue from every known type of endometriosis and were able to then determine specific and more effective treatments as well as whether a sufferer would need fertility treatment, potentially drastically improving outcomes around living with the pain and debilitation of the condition.

Sandoval created Endo Warriors after struggling to find an inclusive enough support group after she was first diagnosed.

“I felt like a minority, and it made me depressed. Endo affects many different types of people, and NZ lags behind other countries in taking a more inclusive approach to supporting those who suffer from it. People fighting endo often don’t speak up because they think their symptoms are normal. I want them to know they aren’t alone.

“NZ doesn’t have official guidelines for GPs to follow that enable them to effectively refer people to a specialist for diagnosis; not only does this mean it takes an average of eight years to be confirmed, but it can also be misdiagnosed as other things,” she says.

“This is why there has been such a need for organisations like Endo Warriors, as people are slipping through the net”.

Endo Warriors is Aotearoa’s first endometriosis charity to be inclusive of all genders, which includes advocating for all people who menstruate, including members of the LGBTQIA2S+ community.

“Endo affects many different types of people. Mentally and physically, it’s a lot to deal with, and that burden can be even greater if you don’t identify with any of the support networks that are available.

“Our work covers everything from education and advice, advocacy at medical appointments, sending post-surgery packs and connecting people through our buddy system, to the chronic pain and exercise workshops we hope to launch soon. We approach it from the perspective of the person dealing with endo - and the practical help they need to manage it,” she says.

Endo Warriors is also fighting period poverty and supplies free period packs and menstrual cups. They work with businesses to help them support their staff with period needs or assist those with endometriosis in the workplace.

HELL is donating all proceeds from the sale of its limited-edition underwear directly to Endo Warriors, with pairs costing $12 or $15. Its Fight Like HELL platform also provides education about endo symptoms and diagnosis.

Siang Tay, HELL’s Marketing Manager, says grassroots charities like Endo Warriors do vital and under-recognised work.

“When you consider that around half of our population menstruate and endo can go undiagnosed for on average eight years, the impact of this little-known condition is significant. Normalising talking about periods, but most importantly, normalising that pain with periods shouldn’t be suffered in silence, is important in beginning the conversations that could lead to an earlier diagnosis.

“We’re stoked to get behind Endo Warriors and support their important work as they advocate for the thousands of Kiwis living with this silent disease every day. The campaign has also shown us that we should take proactive steps ourselves to meet the needs of own team members and customers who menstruate, so we’ll be providing period products in our toilets and bathrooms”.

HELL is raising $66,666 for Endo Warriors through Fight Like Hell. You can find out more about Endo Warriors and its work here.

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