“We restored Nicola’s anatomy.”
Hold tight - we’re checking permissions before loading more content
Those were the confronting words passed between specialists after Shepparton woman Nicola Villani’s third surgery.
The 25-year-old has lived with constant pain for a decade, since endometriosis started attacking her body from within when she was 15.
Likening it to “thick cobwebs all around your insides”, she says pain isn’t the only symptom; it can — and has — caused damaged to organs, particularly reproductive organs.
Despite a case so severe (stage four) that she’s required five surgeries already, with another scheduled in December, no amount of prodding and poking, including both internal and external investigations, has ever shown any sign of the disease.
“Being diagnosed with endometriosis is only really via surgeries, what you call a laparoscopy,” Nicola said.
“No matter how bad my endometriosis has gotten, it's never shown up on an ultrasound, not once.”
It’s a reason she urges women and girls who are experiencing severe, debilitating pain and other symptoms that don’t seem quite right during menstruation or ovulation to keep pushing for answers, regardless of whether they’re met with dismissal at first.
Nicola has seen more than 15 specialists and each time she starts with a new one, she is faced with having to plead her case to convince them that her pain is real.
She carries around with her a thick stack of papers, files and photos containing her medical history to provide a larger picture than just what is written in a few lines on the latest doctor’s referral letter.
In the past, she’s been made to feel like she’s a hypochondriac or as though she’s exaggerating.
It’s been suggested to her that some Panadol, laxatives, breath work and a wheat bag will fix her up.
She’s even been suspected of being an addict and feigning her symptoms as a means of obtaining heavy painkillers.
When Victorian Health Minister Mary-Anne Thomas released the final Bridging the Gender Pain Gap report in the wake of the Victorian Government’s Inquiry into Women’s Pain earlier this month, it confirmed that Nicola’s experience was not an isolated one.
More than 13,000 women and girls aged between 12 and 79, their carers, clinicians and peak bodies contributed to the report, which revealed gender health gaps, medical health bias, sexism, misogyny and feelings of being ignored by clinicians.
“I had a specialist when I was 21 who told me to ‘find a nice man, have a baby with him, come back to this office and I'll give you a hysterectomy’,” Nicola said.
“‘Better yet, I'll take your ovaries out too, and we'll put you on some HRT,’ which is hormone replacement therapy.
“Yeah, so, I'll never forget that.”
The report found that 90 per cent of women experienced pain lasting more than a year, with 54 per cent experiencing daily pain, and 71 per cent reported widespread dismissal by healthcare professionals.
A staggering 89 per cent of women said their pain had affected their mental wellness.
The most common conditions were menstrual and hormonal at 40 per cent, followed by musculoskeletal problems and endometriosis, both at 26 per cent.
With more than a quarter of the female population afflicted with the same condition as Nicola’s, most people probably know someone who is battling endometriosis.
Nicola believes that if conversation around menstruation and women’s pain wasn’t reserved for hushed voices in quiet rooms, the disease would be highlighted more, and, perhaps, lead to more action being taken to understand it better and make improvements in testing, treatment and management.
“When you're 15-16, going into surgery like that, and you've got your mum by your side, the topic of periods is taboo, and not common talk,” she said.
“I was lying on the cold tiles in the middle of the night, almost vomiting in pain, because I thought that's what periods were supposed to be.
“I would be going to school with heat packs, hunched over, like dying and having to be quiet about it because, oh, you know, periods are disgusting and gross; you can’t talk about that.”
Ten years later, she’s tired of being silenced.
She lives not knowing when her next flare-up will be, whether simply going to the toilet will trigger one.
She’s uncertain as to whether she’ll ever be able to carry a baby to term, something that breaks her heart when she considers that she may not.
She doesn’t take many holidays because she needs to keep annual leave up her sleeve for when her sick leave dries up, as it does every year.
Nicola wants to see more emphasis on the disease, starting with more services for women’s health in regional areas, as travelling is a barrier for some women to getting the help they need.
The Bridging the Gender Pain Gap report found that 68 per cent of women confirmed the cost of seeking care was an obstacle.
Nicola estimates she has spent upwards of $50,000 on holistic treatments, specialists and medication in the past 10 years, and that’s without the travel costs — both direct financial expenses and loss of income with time away from work — that regional patients are met with when their specialists are in Melbourne.
But until change starts happening, Nicola urges women and girls who are suffering to find support.
“There will be a doctor out there that will help you, and you will be able to get it sorted,” she said.
“But the main thing is that you're not crazy, your pain is real ... they say that one in 10 women have endometriosis, and if you're that one in 10, keep fighting.”
The government will develop a Women’s Pain Action Plan to set clear goals and respond to the inquiry’s findings over the next six months, in consultation with women.
The report’s recommendations will also guide system-wide improvements in future years to ensure women’s pain is recognised, understood and properly treated.
To read the Bridging the Gender Pain Gap report, visit health.vic.gov.au/inquiry-into-womens-pain