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More than ‘just pain’ is 9honey’s new series shining a light on the lesser-known challenges faced by Australians living with endometriosis, a debilitating disease that affects one in seven Aussies born with female reproductive organs.
In this feature, 9honey spoke with three Endometriosis Australia ambassadors about the horrific mental health impacts associated with endometriosis.
Getting an endometriosis diagnosis takes an average of 6.5 years in Australia, during which time Australians like Ellie Angel-Mobbs are often left to suffer in silence.
And it’s not just their bodies that are keeping the score.
Angel-Mobbs suffered crippling depression as a result of her endometriosis symptoms and the effect they had on her personal, professional and social life for over a decade before she was diagnosed.
READ MORE: Endometriosis care is supposed to cost Aussies a few grand. It cost Deanna over $30k
“I was really sick. I physically couldn’t get out of bed because I was so depressed from having this chronic illness,” she tells 9honey.
“I couldn’t go to work, and I lied to everyone at work about what was actually going on, because it was just too much to be like, ‘I can’t come in because I’m depressed.'”
The painful periods had started when she was a teenager, but when Angel-Mobbs complained to GPs about her symptoms she was told to “harden up” or dismissed outright.
One referred her to a psychiatrist, but not because multiple studies have linked endometriosis to an increased risk of depression, anxiety and eating disorders (which accounted for 1,273 Australian deaths in 2023 alone).
No, that GP was simply convinced Angel-Mobbs’ symptoms were “all in her head”.
“I walked out of that feeling like maybe I was a bit crazy,” Angel-Mobbs says. After that, she gave up on getting help for several years.
READ MORE: Common disease ruined Millicent’s fertility and cost her over $30,000
As her symptoms worsened without treatment, so too did her mental state.
Every time she had to call in sick to work, cancel plans with friends, or lay on the couch in agony because of her undiagnosed endometriosis, she sunk a little deeper into the darkness.
It took a whopping 12 years for Angel-Mobbs to finally be diagnosed with the incurable disease, unsurprisingly around the same time she was diagnosed with depression.
Treatment has helped, but every time her endometriosis flares up, her mental health goes into freefall as she fears how much it will cost her this time, how it will affect her job, her relationships, and her already ravaged reproductive organs.
“There is this great anxious feeling that will eat away at me,” she says, “it’s always in the back of my mind.”
It’s the same anxiety that has lurked in a dark corner of fellow ambassador Deanna Flynn Wallis’ mind ever since she became the target of horrific schoolyard bullying because of her own endometriosis.
Her symptoms started with her first period and by 17, Flynn Wallis was bleeding through period products and her school uniform.
READ MORE: Doctor’s ‘devastating’ mistake with Mia’s diagnosis wasn’t discovered for 10 years
She was bloated, swollen, and regularly going in and out of hospital, and the other kids noticed.
“People spread rumours that I was pregnant with my step brother at the time, even parents spread it,” she tells 9honey.
“It got back to his school, and it really derailed my life. That was just the beginning of much more turmoil.”
The merciless bullying left her with suicidal thoughts and things got so bad she ended up having to travel about 15,000km to Chicago, USA for specialist mental health treatment at a residential facility there.
Flynn Wallis wasn’t officially diagnosed with endometriosis until two years later, when she was 19 and back at home.
By then she was dealing with depression, anxiety and an eating disorder, all which were tied to the disease she knew she’d have to live with for the rest of her life.
Her mental health only deteriorated further when she suffered a “horrific” miscarriage, then spent $30,000 on IVF only to experience another heartbreaking pregnancy loss.
Australians with endometriosis can struggle to conceive and carry a pregnancy, prompting many to fork out thousands for expensive fertility treatments that can take a devastating physical and mental toll.
“Going through IVF was like getting on a roller coaster and it being the worst journey of your life, where you can’t see anything, it’s going so fast,” Angel-Mobbs says of her own fertility experience.
WATCH: Ella Collings shares the realities of endometriosis
Endometriosis causes so much more than physical pain, it causes mental turmoil, financial hardship, it affects Aussies’ careers and leaves one in six patients without a job in their lifetime.
But Sarah Maree Cameron, who has lived with the disease for more than 15 years now, is adamant that there’s light in the darkness.
She understands the fear and anxiety that’s baked into an endometriosis diagnosis – she’s lived it – but Australia is finally taking strides to change the lives and experiences of every single person living with this disease.
READ MORE: Endometriosis is costing one in six their jobs, and Sarah was almost one of them
The Australian government announced a $49.1 million investment into endometriosis in May 2024; Endometriosis Australia and similar organisations are fighting for more research and better outcomes for patients; and decades of stigma and silence around this debilitating disease are finally coming to an end.
More than anything else, Cameron has found comfort and support in the stories from the one million “endo warriors” living in Australia.
“Watching other people having to navigate their own health challenges shows me that I’m able to do the same,” she tells 9honey.
“The one thing that I want everybody to know, that somehow, somewhere, they will find support, because it is so much more accessible now than it even was 10 years ago, and it is going to continue to grow.”
If you or someone you know is in need of support contact Lifeline on 13 11 14 or Beyond Blue. In the event of an emergency dial Triple Zero (000).
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