An Aussie mum is changing how we see endometriosis – one step at a time
After years of suffering from undiagnosed endometriosis, Kat Stanley started Walk the World 4 Endo – a month-long challenge aiming to shine a light on the condition.
It’s difficult to imagine your life being turned upside due to debilitating pain – then having your concerns dismissed for years on end.
But that’s the case for many women with endometriosis, including Kat Stanley, who first began experiencing symptoms aged 15.
“Prior to that I didn’t have any pain and then I just had a horrendously painful period and couldn’t really walk up the hallway to tell Mum,” Kat, director of the Endo Help Foundation, says.
“We went to the GP who told me it was just a normal part of being a young girl and it was retrograde menstruation (when blood flows backwards into the pelvis).”
Excruciating, debilitating experience
At first the extreme pain arrived every couple of months, and then became a monthly ordeal so bad that she often couldn’t stand up, let alone get to school, uni or work.
“When I was in uni in Melbourne, I spent a lot of time in ED in lots and lots of pain, and was mainly just fobbed off by doctors who told me it was normal or that I was missing home, or that maybe it was in my head, or I should see a psychologist,” Kat says.
At 19, after she wound up in hospital again, a doctor suggested she get pregnant – advice that would be repeated throughout the years.
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Endometriosis diagnosis delay inspires Walk the World 4 Endo
This delay is something the Endo Help Foundation, set up to educate and empower people with endo, pelvis pain and period pain, is working to prevent.
Kat initiated Walk the World 4 Endo to spread awareness, raise funds and importantly, let people with endometriosis know they are believed.
Throughout October, participants are encouraged to raise money for endo research by collectively clocking up the 40,075km needed to walk around the world.
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A walk for all levels of ability
Kat explains the month-long event has been designed to make it accessible to people of all fitness levels, including those experiencing pain or recovering from surgery.
“People with chronic pain can’t really do big long walks because they wake up sorer than the average person,” Kat says.
Participants can choose to go for a stroll anytime throughout October, with Kat hoping it will encourage people to move regularly.
“If you’ve got chronic pain, lots of people instinctively just stop their lives and stop doing anything, and actually it is important to have some sort of gentle movement.”
Kat’s endo journey
Kat’s endometriosis was finally diagnosed while she was experiencing fertility issues.
Happily, she had twins, but her endometriosis worsened when her period returned three months later.
“I spent the next nine months just basically haemorrhaging and not being able to leave the house for three days every time I got my period.”
About a year after giving birth, Kat had a hysterectomy, and tried everything from physiotherapy to acupuncture and hypnosis, which she says all helped.
While life is much better now, the 40-year-old cautions a hysterectomy won’t be a solution for everyone.
Where to get help for endometriosis
Kat says if you think you may have endometriosis, and your doctor’s not listening, don’t be deterred.
Insist on seeing a specialist, particularly one that’s affiliated with the Pelvic Pain Foundation.
For more information on Walk the World 4 Endo, visit endohelp.com.au.
Written by Larissa Ham.