Georgia Osbourne was 13 when she experienced debilitating pain during her first period. It would take eight years for her to finally have the answer.
"A doctor said 'you are making up the pain' and referred me to a psychiatrist," she said.
"I spent a lot of time thinking I was crazy."
Hunter-based Endo Articles ambassador, Ms Osbourne was diagnosed with endometriosis at 21.
She felt relief and sadness to have a name to her long-time pain.
"I cried for hours afterwards," she said.
Now 28, she continues to battle full body pain every day. She said it starts as a dull ache and grows into a stabbing, burning and pulling sensation.
"Some days I can't get out of bed, it has taken a lot for me to realise that I will never work full time," she said.
"After a full work week, I am incapacitated for days."
Typically only sleeping three to four hours a night, she experiences abdominal pain radiating up through her chest and legs, fainting and nerve damage.
"All my left shoes are broken at the front because my leg often loses feeling and it will start dragging," she said.
Since her initial diagnosis, Ms Osbourne has tried everything from pain psychology to pelvic floor botox, ketamine infusions, and constant pain relief medication.
She still has not found something that works for her, relying on heat packs and medication to just make it through the day.
Myth busting endometriosis
Endometriosis affects one in nine Australians assigned female at birth, according to the department of health.
The Australian Institute of Health and Welfare said there were 40,500 endometriosis-related hospitalisations in 2021-2022.
Endometriosis occurs when tissue similar to the lining of the uterus grows in other parts of the body, often around the pelvis and reproductive organs.
Hunter specialist gynaecologist, Dr Gracia Chong, said treating endometriosis was not one size fits all.
She rebuked myths that pregnancy is an easy fix and that women's pain is fictionalised.
"Patients almost cry [when diagnosed] because they feel so validated for all those years that they were told the pain was just in their heads," Dr Chong said.
"I am always surprised how much disease you find when you look inside a woman's pelvis".
Painkillers don't cut it
City of Newcastle councillor Peta Winney-Baartz raised her struggle with endometriosis at a council meeting last year. She was shocked by how many people reached out.
The councillor's three daughters also suffer from the condition, and they want to quash the idea that women should just "put up" with pain.
"Young girls need to be told that pain and excessive bleeding that impedes you is not normal," she said.
"You can't just take a Panadol and go on with your day," she said.
While Cr Winney-Baartz and her daughters have been fortunate to access medical care, she acknowledged there were not enough services locally to meet demand.
Cost is also a major barrier to seeking treatment, with many having to rely on private health insurance for surgery and medication.
The councillor said her 20-year old daughter, Ella, was thinking about freezing her eggs due to potential infertility caused by endometriosis.
This procedure costs roughly $300 a month.
Estimates from 2017 show that the overall cost of endometriosis per person was $30,900.
Where is the funding?
The Global Centre for Gynaecological Diseases at the University of Newcastle is working on uncovering the root cause of endometriosis.
"If you don't understand why disease occurs it's very hard to treat and diagnose," the centre's director, Professor Pradeep Tanwar, said.
He said a quicker diagnosis would drastically lessen wait times which currently sit between six to 11 years in most western countries.
What baffles him the most is the lack of funding needed for research.
"In Australia the funding for endometriosis is probably equivalent to a disease which affects four to five people in the whole country," he said. "
Endometriosis affects close to one million people in Australia.
Life interrupted
While the federal government committed to a National Action Plan for Endometriosis in 2018, many still battle with lifelong pain.
As a teenager, Aurora Percival missed days of school from struggling with painful periods and heavy bleeding.
"I rarely left the house, didn't go to school, slept through my days and it just took a toll on my life and what was meant to be my fun years," she said.
Hayley O'Brien experienced heavy and painful periods since 11 years old. Her endometriosis has spread to her pelvic and recto-vaginal areas, and caused her bowel to attach to her pelvic wall.
She sadly suffered a miscarriage, which she said was likely caused by her endometriosis.
"I can't help but feel if I had been referred earlier in my life to a gynaecologist perhaps I'd have a different outcome," Ms O'Brien said.
This Endometriosis Awareness Month, Ms Osbourne, wants to highlight the ongoing pain that her and many other women in the Hunter region face.
"There are people out there who will support you," she said.
For support and advice with endometriosis, you can call the QENDO 24/7 support line at 1800 ASK QENDO or 1800 275 573636.
