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Picture it: You’re 14 years old, sitting in a doctor's surgery with your mother and they tell you you’re pregnant. The thing is, you’ve never even had sex...
That’s the very bizarre scenario that reality TV star and author, Erin Barnett, faced when as a teenager, she went to the doctor after suffering debilitating pain.
Insisting there was no way she could be pregnant, she was subsequently subjected to multiple pregnancy tests, scans, blood tests and an internal ultrasound revealing chronic endometriosis and a 3kg cyst.
Since then, Erin, now almost 27, has endured 16 ovarian surgeries, burst cysts, had an ovary removed, been operated on by a now-disgraced surgeon who forgot to perform her surgery as key-hole, lives with constant pain and has been medication-shamed.
Despite this, Erin retains an upbeat approach to the horror of her experience and a determination to encourage others to take charge of their own health as stories like hers are frighteningly common.
Chronically Ill and Ignored
Like so many girls and women who are often not heard when they speak up about their health concerns, Erin found that doctors largely ignored her, the actual patient, and often spoke to her mum instead.
“I was only 14-15 when I was diagnosed with PCOS (Polycystic Ovarian Syndrome),” Erin, who starred on Love Island Australia and Beauty and the Geek, tells Yahoo Lifestyle.
“The doctors/surgeons were really talking to my mum about my diagnosis, not really speaking to me directly. Even though it’s me getting diagnosed. I was just trying to gauge how everyone else felt about it - at the time it didn’t seem that big of a deal.”
Erin says later on she knew that being diagnosed with endometriosis wasn’t a good thing, but struggled to find an explanation from doctors as to what was actually wrong with her.
“It wasn’t explained to me exactly what endometriosis was - so again, I was just focusing on all the pain I was in and how we could fix the pain. Now being almost 27, I realise so much more could have been done when I was younger that could have potentially helped me when I got older.”
The reality of living with endometriosis and PCOS
Erin tells Yahoo Lifestyle that when you live with such chronic health conditions, you never know what your day will be like until you wake up and start moving around.
“You may have a great day, be super social, not in that much pain. Other days, you are bed-bound, crying and begging for the pain to stop. It affects everything in your life, so you’ll always be calling friends/family to cancel plans because of your pain. Or, letting them know last minute you are feeling great and can actually participate in activities!”.
“Sometimes a good ol’ cry can help!” explains Erin. “Of course, I need those strong pain killers to manage the pain; on really bad pain days unfortunately even the strong pain killers you are prescribed don’t help.”
The reality star also says that having a good support system of friends and family can help significantly.
“Being reassured by your partner can be really helpful, just getting that sympathy from others makes you realise they understand how hard this may be.”
March is National Endometriosis Awareness Month and according to the World Health Organisation, endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally.
1 out of 9 women are affected by this debilitating disease – that means over 830,000 Australians have or have suffered from endometriosis.
Endometriosis often starts in the teenage years and can take up to an average of 6.5 years to diagnose.
This is a disease that affects so many women but is misdiagnosed so often, leaving many women to suffer in silence.
How you can help
Recently named an Ambassador for Endometriosis Australia, Erin is part of a growing movement giving voice to this previously taboo topic through sharing her experience and her advocacy.
“I would like the public to know that endo and PCOS are more common than you think “ Erin explains. “So many women are suffering in silence. We need more funding for research!”
Erin tells us it’s also important people understand that the pain sufferers go through every day is excruciating.
“It may be hard for others to understand because you can’t see what’s going on inside our bodies. But please believe us when we say it’s not just a bad period!”
Novel approach to raising awareness
Through her YouTube channel and Instagram, Erin connects with other sufferers around the globe every day, and the savvy businesswoman can now add 'author' to her long list of talents as she has written a book, 'Endo Unfiltered', published by Murdoch Press in February 2022 to help girls and women take charge of their endometriosis/PCOS journey.
While a raw and honest account of her journey living with Endo, Erin’s humour and personality shine through and add warmth and spark of hope that will no doubt inspire many women and girls as they undertake their own journey with endometriosis and PCOS.
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