Inez Goves lives in excruciating and unpredictable agony.
"It is like someone is holding a flame to my pelvis, sharp stabbing pains that make you breathless," she says.
The central Queensland teacher has endometriosis, an often-debilitating condition where tissue similar to the lining of the uterus grows outside the uterus or in other parts of the body.
Ms Goves has had three surgeries, spent thousands of dollars on medication, and has had to temporarily stop doing her "favourite thing in the entire world" — her job.
Still living with crippling pain, the 25-year-old is facing the overwhelming decision of whether to freeze her eggs and have a hysterectomy.
"I get really mad with modern medicine," she said.
"I'm 25 and I have to make these decisions.
"I should be out partying with my friends or doing whatever the hell I want to, like travelling — not being at home and in pain."
'You're hormonal'
In Australia, about one in nine girls, women and those assigned female at birth live with endometriosis.
It often takes years to get a formal diagnosis, as was the case for Ms Goves.
"Back then, we were just told it was bad periods, like, 'Oh yeah, you're being really reactive because you're hormonal,'" she said.
Mike Armour, an associate professor in sexual and reproductive health at Western Sydney University, said some doctors still downplayed the symptoms despite the prevalence and increased awareness of the condition.
"We know that women's pain in general is just not taken as seriously as men's," he said.
But Dr Armour said the speed of diagnosis was slowly improving thanks in part to better training in ultrasound techniques.
$250 a fortnight
Ms Goves had her first period at 11, started contraceptives for hormone control at 14, and was formally diagnosed with severe endometriosis at 18.
She had her first surgery at 20.
"My endometriosis was on my ovaries, it had stuck my bowel and my uterus together," she said.
Ms Goves said after two surgeries she enjoyed a mostly pain-free year that she spent travelling before returning to Australia and buying a house.
"I loved that part of my life," she said.
When the endometriosis returned, financial stress forced her to rely on family support and generous community donations.
"I had to pay $6,000 out of pocket for a surgery, and then I'm on 12 medications a day — that's $250 a fortnight," she said.
This month, unable to work through the horrific symptoms, Ms Goves was forced to put her house up for rent and move back in with her parents.
Symptoms dismissed by specialist
Before her most recent surgery last year, Ms Goves said the unbearable symptoms were overlooked.
"My body didn't feel right," she said.
"I thought my specialist would believe me, and he was like, 'No, it's not your endometriosis, it hasn't grown back.'"
After "one 10-minute consult" with a new specialist, she was booked in for surgery.
"I had endo on my uterus, my ovaries, my bowel, my bladder and my pelvic abdomen," she said.
During surgery, doctors noticed Ms Goves' uterus was "swollen and bulky", which indicated adenomyosis.
That condition occurs when endometriosis grows in the muscular wall of the uterus.
"Unlike last time, I wasn't pain free [after surgery]," she said.
"[I've been] ending up in hospital because I'm suicidal because I'm in so much pain," she said.
'Last option' before hysterectomy
Ms Goves has been in hospital four times this year and presented more than 20 times last year.
In mid-January, desperate to try anything, her specialist prescribed Zoladex, a small implant used to suppress hormones that has a common side-effect of early menopause.
"It's got the same sort of chemicals as chemo," Ms Goves said.
"It's my last option to try before looking into a hysterectomy."
Ms Goves did not want to make a definitive choice about her fertility so young, but felt forced to contemplate it when specialists recommended freezing her eggs.
The decision has been made tougher by the fact that removing the uterus does not guarantee the pain will end.
$9.7 billion problem
Dr Armour said work was underway to repurpose other pain-relief drugs, including medicinal cannabis, for endometriosis sufferers.
He said while "a huge amount" of research was happening in Australia, more funding was needed, particularly to look at genetics and changes in cells.
"Until we fully understand what causes endometriosis we're still going to be struggling to get effective treatments," he said.
"It has similar prevalence rates to things like diabetes, but only gets a fraction of the funding."
Dr Armour said the federal government's plan was a step in the right direction.
"Endometriosis costs the Australian economy about $9.7 billion, a year or about $24–$26 million a day," he said.
"When you see $28m being given to endometriosis research, that sounds like a lot and it's a great start — but it's really just one day's worth of economic impact."
