As Australians mark International Women’s Day, conservationist Bindi Irwin has broken her silence about her 10-year battle with endometriosis.
From a hospital bed in New York, the 24-year-old shared her decade long battle with pain, fatigue and nausea to highlight the prevalence of the disease which afflicts millions of women worldwide.
“Every part of my life was getting torn apart because of the pain,” she says.
“A doctor told me it was simply something you deal with as a woman and I gave up entirely.”
After deciding to undergo surgery, Irwin discovered she had been diagnosed with endometriosis, a condition in which the tissue lining of the uterus begins to grow outside of the uterus causing intense pain and in some cases infertility.
Endometriosis affects one in nine women globally and cannot be cured.
Irwin says getting validation from doctors was “indescribable” as she thanks all those who believed her pain.
Irwin is just one of the 190 million women suffering in silence.
Twenty-year-old Chelsea Timandi, from Queensland, says she was 13 when she first saw a gynaecologist.
“The first thing they actually said to me was ‘are you sexually active you might have an STD?’ I was 13,” she says.
Seven years later, Timandi has had 10 endometriosis surgeries.
Four of them have been laparoscopies, the surgeries where they go inside and cut the disease out, and six of them were hysteroscopies, a procedure used to examine the uterus.
Timandi says her entire adolescent life was met with dismissal from professionals around her.
“People don’t know how bad it is, they usually just say ‘oh period pain’ but it’s so much more than that.
“At school I noticed I had to get up and leave to go to the toilet just so I could sit on the floor for a bit to let out my tears and call my Mum.”
Timandi says endometriosis has affected all aspects of her life. She is seeing a physiotherapist, dietician and psychologist to get her back on track with life.
“It’s so just financially taxing and an expensive disease to have.”
Not only is she recovering post-surgery, but she says she is now forced to go down the path of egg freezing after finding out her egg reserve is extremely low.
“That’s just really hard to get my head around that it’s now affected my fertility so it’s just a never-ending battle.”
Specialist gynaecologist and AGES Accredited Advanced Laparoscopic Surgeon Dr Sean Copson says the condition can take on average up to eight years to diagnose because of a lack of awareness, education and funding.
“There is definitely a knowledge gap when it comes to diagnosing endometriosis,” he says.
“Often, patients see their practitioner with symptoms, only to be told, if not made to feel like it was all in their head or just something to put up with.”
Dr Copson says there needs to be more education of practitioners about not dismissing patients. Instead, he believes there needs to be adequate expertise to delve into those symptoms and sort out management plans.
He has high hopes for endometriosis to become a more common conversation.
“Putting it in the public light and showing people how common it is, is really elevating that conversation and making governments stand up, take responsibility, to really advocate for women’s health and improve the management of it.”
As part of Endometriosis awareness month, landmarks all around Australia are standing in solidarity for women suffering with endometriosis by projecting bright yellow as part of the Endo Enlightened 2023 project.
The project is designed to demonstrate hope and bring awareness to the disease.
The Matagarup bridge, Fremantle prison and Graham Farmer freeway are just some of WA’s participating landmarks that have been lit up in yellow this week.
Timandi says projects like these are extremely important.
“Everyone knows someone who has endometriosis, and it affects them in one way or another.
“We know so much about diabetes which affects the same amount of people so why shouldn’t we be shouting endometriosis awareness from the rooftops as well? It deserves the same recognition.”
She says the endometriosis community is what keeps her going.
“You feel so alone but then you actually see how many other people are actually suffering just like you and it’s so beautiful to be able to connect through social media and in person, and through community events.”