A petition has been launched to review and re-write the Government’s national endometriosis guidelines. The brains behind the petition, Endo Warriors Aotearoa, are a grassroots charity working to support those affected by endometriosis. Second-year Law and Politics student Jomana Moharram, who is on the Youth Advisory Board of Endo Warriors, explained why their petition was so important.
Endometriosis is an extremely painful disease causing uterine tissue to grow on other organs throughout your body. It often causes severe pelvic pain not dissimilar from period cramps – but much worse. “It’s so much more than a bad period,” said Jomana. “It’s everything in your life getting dictated by this illness [...] Your mental, social, physical wellbeing, your legs, your lungs… It's everything.”
One in seven women, girls, and people assigned female at birth are diagnosed with endometriosis, and even more remain undiagnosed. Endometriosis is hugely misdiagnosed, and as it’s predominantly females who suffer from it, the disease is not as researched. This means that medical care for endo-sufferers can be a difficult road. Getting the level of care and support needed is very rare, from getting an accurate diagnosis to the right medication. “What usually happens is they say, ‘It’s a bad period, go home,’” said Jomana. Either that, or they just give you contraception: “They hand them out like candy.”
For Endo Warriors, one of their main goals is to raise awareness of the disease, which can be “taboo”. Jomana told Critic that it’s important that the everyday student not only knows of the existence of endo, but also how to recognise the symptoms and how to support people suffering from it. “Just knowing that endo is a possible diagnosis when your mates are telling you, ‘I’m feeling these things’ [...] that's a really big piece of knowledge that a lot of people don’t have,” explained Jomana.
The most important thing Endo Warriors are doing right now – beyond their typical work of supporting endo-sufferers and advocating for reproductive justice in general – is a petition to review the guidelines for endometriosis to improve access to diagnoses and support, and make them more inclusive. “Being on the journey with people as they get diagnosed and get the help they need is really meaningful work,” Jomana said.
The petition also aims to recognise endometriosis as a chronic (whole-body) issue, rather than purely menstrual due to the amount of pain it can cause. Unlike a period, endo can’t be soothed by a hot water bottle on the tum and a block of dark chocolate. Endo Warriors also want clearer guidance for diagnostic timelines, treatment plans, and national tracking around treatment outcomes and disparities.
The petition has already been supported by Benjamin Doyle, a West Hamilton based list MP for the Greens Party, but Endo Warriors are always looking for more local body members to support the petition. ”Every bit of support that we can get is amazing,” said Jomana. Students can sign the petition or sign up to volunteer by getting in touch through email (info@endowarriorsaotearoa.com) or socials (@endowarriorsaotearoa).