We are not Invisible: EndoWarriors Aotearoa on destigmatising endometriosis

Words by Jaime Elliott (she/they) 

I woke up today and my stomach hurt. 

I think of having to call off work, the multitude of assignments I’m still catching up on from my last period, and my increasingly growing and stressful to-do-list. I brace myself for whatever pain my endo will decide to give me—one where I can’t move, or one where it barely registers, accompanied by immense guilt for wasting a good day. I feel defeated by my own body, and I haven’t even gotten out of bed yet. 

Endometriosis is an incurable, chronic health condition that affects one in ten AFAB people, though experts believe the number may be closer to one one in four. Tissue that typically grows inside the uterus grows on the outside, which leads to inflammation and severe pain. Its cause is unknown. Endo can affect sufferers immensely at any given moment. Yet conversations about it are so often hushed before they can start. I have not once walked into a space, spoken about menstruation, and been met with comfort, which I find appalling. Are we still scared of talking about periods when it significantly affects so many people? 

Endo Warriors Aotearoa (EWA) has taken massive steps in the journey towards destigmitisation. The charity has inclusive policies and advocates for gender non-conforming sufferers of endometriosis. Jess Sandoval (she/her), endometriosis survivor and founder of EWA, told me she started the charity after not feeling that she fit into the support group she was attending. “I was just real depressed and thought, ‘Well, I can either lie here or I can take everything that I’ve learnt for the last 20 years and help people feel seen.’’

By normalising menstruation, we increase the chance of younger people with endo being diagnosed far earlier than the current age. It's been estimated that as many as six out of every ten cases of endometriosis may remain undiagnosed. The average age of diagnosis lies between 25-35, and the average wait time for diagnosis can be between 4-11 years on average. Reflecting on my experience, I know I was lucky to be diagnosed at age 15. 

Existing research for endo is rife with stigma. A now-redacted study published in 2013 was titled ‘‘Attractiveness of women with rectovaginal endometriosis’. It looked solely at caucasian women, and judged their attractiveness by whether they had lean silhouettes, large breasts,, and an earlyly coitarche (i..e. the age of first having having sexual intercourse). Professionals were appalled from the moment it was published, and ironically, the time it took to retract the study is the average time it takes to be diagnosed with endometriosis.  

EndoActive co-founder Sylvia Freeman seeks to fund more inclusive research just as EWA does. “[The 2013 study is] disgusting, it makes me sick. We’re here begging for research funds. Endometriosis is so grossly underfunded globally compared with what it costs the economy, and to know precious money has been put to a study like this is heartbreaking.” Because of research like this, EWA is now looking for funding for further endometriosis research that is inclusive and unstigmatised. 

EWA aims to conduct some incredible research. Acknowledging the invasive nature of diagnosing endo in the current day, they have begun studying the potential of diagnosing endometriosis with a blood test or pap smear. They’ve also begun finding participants for a study looking at the benefits of medicinal cannabis for treating endo. Despite pressing evidence of its benefits, this hasn’t been done in Aotearoa before.

With these lofty research goals, funding is a priority. Fortunately, Hell Pizza has started a campaign to raise $66,000 for the charity, which may mean that achieving these big goals is just over the horizon. 

When diagnosed, I kept my condition top secret. The thought of someone hearing the crinkle of my pad made me want to crawl out of my skin. When I first heard the word ‘endometriosis’, it seemed long and scary. Funnily enough, it turned out to be a long and scary process. But it would have been considerably worse if I was unaware and undiagnosed. Educating youth on what is healthy and normal in menstruation is so important——coming from someone who pushed their illness to the side out of undereducation on the topic. 

Jess has made massive steps in spreading awareness of endo, through using inclusive language, destigmatising menstruation, and educating school students by running period education classes. “We go in and do them, talk about all things period. The very first thing I do after introducing myself and my story is talk about how menstruation shouldn’t be gendered, and from there the language I use is all inclusive. Because I think it's really important, especially going to schools, to make sure everyone that menstruates feels like they belong to that conversation.”

Jess recalled a 12-year-old girl approaching her after her class. “I’ve been bleeding for three months, is this normal?” she asked. Jess told her no, and asked if she’d spoken to her parents about this. “No, we don’t talk about this stuff,” was her reply. If those period education classes weren’t there, she would have continued struggling silently. 

“If the youth at school are going through that much bleeding, they’re not gonna be active in school, they’re not gonna be able to retain the information they’re being taught, and they’ll be in pain, tired, lethargic,” Jess said. There are so many young people in similar situations, and it’s not okay to neglect this serious issue. It isn’t right to only learn to understand your body when there is something wrong with it.   

An Australian study conducted in 2023 called “‘It just stops me from living’: A qualitative study of losses experienced by women with self-reported endometriosis’’ estimated that, financially, those with endo lose $30,000 per year through lost work productivity and medical treatments. Though these results may seem grim, research like this is a massive step up from the redacted study I mentioned prior.  Research is being done for people with endometriosis so their lives can be improved in the future. 

Like Jess says, it is incredibly hard to be a student with endometriosis. It can make my performance poorer than what I know I'm capable of, and it’s frustrating. It’s even more difficult to be a student who is also working, like so many of us are. “Trying to study, trying to work just to pay for life, and trying to manage this pain is hard. Like, you take time off work, and then you don’t have enough money to pay for things. You can’t take time off uni because then you fail… It's like, what do you do?” says Jess. 

EWA is the first endometriosis charity to advocate for queer endo survivors. Jess makes spaces for everyone with endo, as it is a lot to burden alone. People can reach out to the charity for access to TENS machines, help with booking and funding appointments, and further support forfor queer peopleople with endo. Ultimately, Jess shares, “Our goal is to have a building where people with chronic pain can come in and know that it's a safe space to sit.” If you want to donate, you can do so at endowarriorsaotearoa.com, or you can follow them on instagram @endowarriorsaotearoa.

Managing an invisible disease with a stigma attached to it makes the process more difficult than it needs to be. Not all employers or lecturers fully grasp the severity of the condition, and it can be exhausting to have to explain it so frequently. Having to pace yourself constantly and make those around you aware can be really really draining. The discomfort is worth it, though. I do it in hopes that another survivor sees me speaking about it, and has the courage to speak about it too. I do it so my family and friends speak about menstruation openly. 

In exploring my identity as a queer person, I felt the need to explore where my chronic illness fits in. If I’m going to have it for the rest of my life, it's an important part of me that must be acknowledged. I’ve made an effort to speak about it more, and sit with the discomfort the room brings me in an attempt to advocate. 

I ask you to speak about menstruation, tell a friend when you need to walk slowly because you’re having a bad period, and and support your loved ones who menstruate. 

Our illness may be invisible, but we are not.