Endometriosis is a painful condition that affects one in 10 Aussie women.
Endometriosis is a painful condition that affects one in 10 Aussie women.

What the endo?

It's those sharp stabbing pains that stop you in your tracks. It's that feeling that a grater is shredding your insides.

It takes you out of school or work and keeps you in bed.

It is endometriosis.

In light of Women's Health Week, which was celebrated all throughout the country this week, the Weekend Magazine shines a light on the surprisingly common condition that is keeping one in 10 Aussie women clenching in pain and heating up thousands of hot water bottles.

Endometriosis is caused by abnormal tissue growth outside of the uterus walls, causing intense cramping pain, digestive problems, back pain, frequent nausea and menstrual irregularities.

It is a condition that takes no prejudice, affecting some women in their early teens and others much later in life, even after childbirth or hysterectomies.

The long road from first feeling something was wrong to eventually being diagnosed, was as emotionally traumatic as it was physical for Georgia Stuart, who said the whole experience nearly sent her mad.

"Doctors had me on antibiotics for a kidney infection that I never actually had," she said.

"After two months of being on these antibiotics I was going crazy because I thought 'this isn't helping anything'. I felt literally mental because all the doctors would tell me, 'there is nothing wrong with you'."

"I was thinking: 'Is it all in my head or am I actually feeling like this?'"

 

Georgia Stuart, a 23-year-old university student who relies on expensive surgeries to keep her pain at bay.
Georgia Stuart, a 23-year-old university student who relies on expensive surgeries to keep her pain at bay. Tessa Patrick

Georgia was in Year 11 at the time and had missed more than a month of school trying to deal with her diverse symptoms that extended much further than "period pain".

"I had sharp back pains, I couldn't exercise, I was really fatigued and had a heap of digestive problems. I'd have like one mouthful of food and be so bloated," she said.

"I never thought it was my period because it was normalised, everyone was like, 'just take some pain-killers, periods are painful and that's the way it is'.

"I was at boarding school at the time and because I was missing so much school, my Mum and Dad came and picked me up. My Mum took me to a doctor back home and she came with me. When I was telling the doctor all my symptoms she kept saying, 'oh, it's your posture, that's why you've got these back problems'. But if it wasn't for my Mum demanding an ultrasound then I don't know what would have happened."

The ultrasound revealed a large cyst on Georgia's ovary and it was the catalyst that sent doctors in for a closer look. While trying to remove the cyst they discovered mass amounts of endometriosis lining the outside walls of Georgia's uterus.

Turns out her period pains weren't "normal".

While the relief of finding out she "wasn't crazy" numbed her for a while, soon the realisation that she'd been diagnosed with life-long incurable disease began to settle. The only way to relieve Georgia's symptoms was through invasive surgeries that cost about $12,000 a pop. And just nine months after her first surgery in 2011, Georgia's intense symptoms returned, which meant more appointments, more time out of school and more pain. So this time the teenager opted to visit a specialist in Sydney.

"The surgeon said there was endo everywhere, so the last surgeon obviously didn't do a very good job. That's why it's super important to find a proper specialist and someone who knows what they are doing," she said.

"I haven't had a surgery since that second one in 2012, now I am coming up to another, but that's a pretty good haul, nearly six years, compared to nine months."

Georgia considers herself one of the lucky ones. As a university student with no health insurance she leans on the financial aid of her parents to see specialists and get the surgeries. However, she believes the health system needs to step up to aid a condition that is as prominent as diabetes and asthma.

"In the public system, you literally have to wait for someone to call you, to say you can go to a gynaecologist, so in saying that, you might not even get someone that's experienced in endometriosis. Then you go and finally get the surgery you've been waiting a year for, and it's probably not a specialist and nine months later, like me, you've got your problems again," she said.

"If it wasn't for my parents I would be in a very stressful situation."

In July this year, health minister Greg Hunt launched the National Action Plan for Endometriosis. As part of this plan the Federal Government has committed $4.5 million for research to help reduce the delay in diagnosis, boost public awareness and educate teachers, doctors and employers about the condition.

For now, Georgia is waiting on MRI results to reveal how much endometriosis growth she's had since her last surgery. Right in the middle of her semester at USC, the 23-year-old is hoping she won't be called in for immediate surgery.

"Last time I had surgery it interrupted my whole HSC and I didn't do very well," she said.

"I just want to be able to get good marks for once."

A lot has changed in the past seven years and Georgia said the support available now was much more accessible than when she was diagnosed. From health-care professionals to online support networks and media coverage, she believes women are a lot better equipped to first recognise the condition and receive appropriate health care, however, this is just the beginning chapter for a story that needs more answers.



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