By Zoe Simmons
It’s Endometriosis Australia Ambassador Erin Barnett’s goal to educate the world about endometriosis.
The 25-year-old had her first encounter with the condition at the age of 13, when a 3kg cyst was found on her right ovary. But even after surgery to remove it, her symptoms continued, with periods so painful, she felt like she would almost pass out. And when she tried to seek help and find answers to her abnormal pain, her concerns were pushed to the side.
“I was crying from the pain,” she told Endometriosis Australia.
“I remember going to the doctors with mum, and he said it was just a bad period. Even when they said it looks like there’s spots that could be endometriosis, it was never investigated. I was just told to try a different pill.”
With two older sisters, Erin was told the pain was normal—and that this is just what happens as a woman. That’s when Erin began researching.
“I just knew something wasn’t right. No one was describing the pain in the same way.”
Despite having had a shocking 16 surgeries for the condition, with six in 2019 alone that resulted in the removal of her left ovary, Erin was only diagnosed with endometriosis three years ago. She experiences almost daily pain—which has a huge impact on her life.
“When it’s bad, it’s unbearable. All I can do is take painkillers and lay in bed with a heat pack, hunched over. It’s so exhausting. I might just be laying down, but I’m in so much pain that it’s tearing me apart—and people don’t understand how tiring that is.”
“I feel like being set on fire would feel less painful than what’s happening inside of me. People see the burn marks on my body from my heat pack and think ‘oh that’s painful’, but it’s nothing compared to the pain they can’t see.”
“It affects your mental health, too, because you can’t confide in people who don’t experience what you do, and then you feel like you’re exaggerating, when you’re not.”
Erin appeared on the fifth season of Beauty and the Geek back in 2013. In 2018, she was studying to be a nurse before joining the first season of Australia’s Love Island, and the sixth season of I’m a Celebrity . . . Get Me Out Of Here in 2020, with Endometriosis Australia as her chosen charity.
As an ambassador, she hopes to use her story to raise awareness—and to help people advocate for themselves in a system that doesn’t always listen.
“I feel so honoured to be working as an ambassador for Endometriosis Australia,” she said.
“My goal is to teach people about endometriosis from a young age. I want people to know as much as they can about endometriosis—it’s not enough to just teach them about periods. We need to teach them about everything that can happen to ovaries and the reproductive system. I wish I had someone explain this to me when I was 14.”
Erin also believes there should be more funding for treatment options, as currently, there is no cure for the debilitating condition that affects one in nine women*(including people who identify as gender diverse).
“It’s so common. Why can’t we have more funding? That would help so many women get help faster, instead of spending years in pain on a waitlist.”
To fellow endo warriors, Erin’s advice is simple.
“We need to stand up for ourselves,” she said.
“I hope I can inspire people—particularly the next generation—to believe in themselves. The pain is not in your head. It’s your body, and you deserve to find answers. Don’t leave the doctors without them. If one won’t help, go to another.
“Let’s talk louder about endo.”