The Aussie woman is sharing her story in support of others facing the same condition. Photo / Supplied
The Aussie woman is sharing her story in support of others facing the same condition. Photo / Supplied
Sydney artist and neuroscientist Tanya Duckworth knows all too well the power of a strong image – it's part of the reason she has shared a candid photo of herself crying from the pain of her chronic health condition.
The 40-year-old suffers from endometriosis, a debilitating disease which causes tissue similar to the lining of the uterus to grow in other areas of the body.
"Doctors suspected appendicitis but no one was able to figure out what was wrong with me. I'd generally get sent home a few hours later because the results would come back negative."
Not many understand what she and other sufferers of endometriosis go through, Duckworth says. Photo / Supplied
"I was the one who told my GP that it was only when I got my period that this happened, the emergency department doctors never saw the correlation or suspected endometriosis even after explaining it was only just before or during my period."
By the time she was 16, Ms Duckworth had started experimenting with contraceptive pills, at the recommendation of her doctor, as a way to manage her symptoms.
"I tried that up until I had my first surgery at 26. I think I may have tried every pill on the market and none of them helped," she said.
Prior to diagnosis, Ms Duckworth said she tried various hormone treatments including IUDs and progesterone-only pills.
"None of them worked for me. Some of the side effects (of some medication) have been worse than the endometriosis itself.
"Some caused my hair to fall out, others caused really bad acne. Most didn't help with the pain at all.
Living through her teens with endometriosis was a harrowing time because not only did peers not understand but Ms Duckworth said people thought she was "a bit of a complainer".
"People thought I didn't want to do sports at school or I was trying to get out of school work because I would always be going up to the sickbay.
Duckworth has had four surgical procedures for the condition. Photo / Supplied
"And because there was never any real diagnosis, I started to think maybe this is in my head."
Despite constant attempts on her part to get clarity about her health condition, she didn't receive a formal diagnosis until she was 26.
"My female GP said she thought it was endometriosis, and she referred me back to the gynaecologist who had already dismissed the possibility because I was 'too young'.
"He (her gynaecologist) almost refused to do the surgery. I basically had to demand I get the surgery done so I could find out for sure.
"It was getting to the point where it was impacting my life so much. I just wanted to know if that's what it was."
Ms Duckworth's surgery revealed she had endometriosis, which she said was removed as part of the procedure.
While the surgery alleviated some symptoms, three years later, the then 29-year-old said she was beset with constant and chronic urinary tract infections.
"I lived with chronic UTIs for a couple of years and was continually put on antibiotics by multiple GPs," she said.
Despite seeking specialist help from a urologist, she was told: "some women just get UTIs a lot" and was prescribed a permanent, low-dose antibiotic.
Eventually, the symptoms became so bad, a doctor recommended a scan which revealed a growth in her bladder.
"I was sent into a new urologist and surgery scheduled within a week. I had a benign tumour and endometriosis removed from inside my bladder," she said.
Despite Ms Duckworth's difficult health journey, which has at times derailed her career, she has been able to complete her studies and is now undertaking a PhD in neuroscience.
And while her condition is managed through a combination of regular surgeries and by being on a contraceptive pill she takes without a break, she lives in fear of her life being "ripped apart".
She's turned to art as a way of coping with the condition. Photo / Supplied
"The pain of endo feels like you simultaneously have a bowling ball covered in spikes sitting inside your uterus and lower back, weighing you down, while also having barbed wire wrapped around all of your internal organs.
"It genuinely feels like you're being ripped apart from the inside out."
To date, she has had four surgical procedures to remove endometriosis from inside and outside her uterus.
Adhesions have also been removed from her ovaries, bladder, bowel, liver, uterosacral ligament, and various nerves in the pelvis and lower spine areas.
Speaking out about the condition is a way Ms Duckworth believes she can help others.
To help raise awareness about the disease, she has partnered with Endometriosis Australia and QENDO (Queensland Endometriosis Association) to help promote Endometriosis Awareness month and EndoMarch, a worldwide event held on March 28.
The organisation estimates around 830,000 Australian women suffer from the condition at some point in their life.
As part of her recovery, Ms Duckworth said she turned to art as a way of processing her feelings and plans on having an exhibition to highlight her - and others' - struggle with the illness.
"I have tried to capture that rawness of what we actually go through. The tortuous crippling pain that most people don't see.
"Most people see us when we are well, and they don't see those moments when we are vomiting over the toilet, and not able to move, and glued to the bathroom floor."
