Horror condition plaguing girls as young as eight years old

Laura Furiosi thought she had appendicitis but it turned out to be much more sinister – then she found out her daughter had the same condition.

Laura Furiosi was a 20-year-old university student when she collapsed in her kitchen, halfway through trying to warm up a heat pack for the debilitating pain she was in.

She was rushed to hospital where doctors suspected appendicitis, but when they opened her up they discovered the cause was much more complex – and widespread.

Doctors diagnosed Laura with endometriosis, a disease in which tissue similar to the lining of the uterus grows outside it, usually in areas like the ovaries and fallopian tubes as well as on organs such as the bladder, bowel, vagina, and cervix, causing severe pain.

Endometriosis – also known as endo – is a whole body condition and it affects everyone completely differently. It affects people’s ability to go to work and school, and their ability to function on a day-to-day basis.

“In terms of how quickly they were able to diagnose me, I was one of the lucky ones,” says the Brisbane mum, who is raising four teenage daughters, one of whom also has the condition, “but they just sent me off with a pamphlet.”

Initially, doctors thought Ms Furiosi had appendicitis. Picture: Supplied

"It’s really a lifetime of advocating for yourself in a system where endo still isn’t very understood,” says Ms Furiosi. Picture: Supplied

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“It wasn’t until some time later that I had my first laparoscopic (keyhole) procedure, at which point the doctor saw how widespread the endometriosis was and refused to operate,” says Laura.

“I’ve been told I’d need a colostomy bag, told I’d never have children, even told I must be mistaken when I told them it was on my diaphragm as well – even though they went in and found it there too. It’s really a lifetime of advocating for yourself in a system where endo still isn’t very understood.”

Twenty years later, Laura says she’s heartbroken that her 17-year-old daughter, Bella, is essentially faced with the same fight.

Endometriosis has been a blight on the bubbly teen’s high school years, with the Year 12 student often having to miss school due to her condition not being fully understood by teachers and staff.

“She has to go to the sick bay quite often when she is in pain,” her mum Laura explains, “once a teacher actually said to her: ‘it’s OK, you don’t have to pretend to be sick to miss school if you’re getting bullied or something.’

“There’s just not enough awareness of what it actually means or how severe the pain can be, and I hate that Bella is having to experience the same pain I do.”

Twenty years later, Laura says she’s heartbroken that her 17-year-old daughter, Bella, is faced with the same endo fight she was. Picture: Supplied

78 per cent of students say periods stop them participating in activities

New research conducted at the University of Western Sydney and funded by Endometriosis Australia has found that a staggering percentage of children and teenagers have their schooling interrupted by their periods.

Lead author Dr Christina Curry from the University’s School of Education said by exploring the perspectives of students, parents and carers and teachers, the research emphasised the importance of comprehensive menstrual health education and support that addresses young people’s diverse needs and concerns.

“We know in Australia that around 90 per cent of the population under 25 years of age experience regular period pain,” said Dr Curry.

“Our study found that 78 per cent of students surveyed reported that their periods stopped them from participating in activities, highlighting a pressing need to implement strategies and policies to effectively support students.”

“There’s a perception that endometriosis is only something that affects fertility,” says Monica Forlano, board chair of Endometriosis Australia, “but it’s been found in children as young as eight years old.

“You’re never too young to get it, and in many cases – certainly in my case – it was incredibly painful from my very first period. These kids shouldn’t be suffering without diagnosis, and they shouldn’t be missing out on education opportunities.”

More education on period-related pain is needed

The research, which surveyed 296 young people (aged 13–18 years), 274 parents and carers, and 116 secondary school teachers, also found that while 60 per cent of teachers surveyed taught about menstrual health in their school, only 37 per cent of this cohort reported teaching on topics related to addressing period-related pain.

“Current shortfalls in education at schools identified by the report need to be addressed,” says Dr Curry, “these include the need to enhance support for students experiencing menstrual symptoms, accommodating cultural needs, and normalising conversations and stigma about menstruation.”

‘We already have the solutions – now the states need to act’

For Jess Taylor, chair of the Australian Coalition for Endometriosis (ACE), the most frustrating thing about what the research shows is that the education programs already exist – they’re simply not being implemented.

PPEP Talk® – a federally-funded, medically-accurate program targeted at high school students, has been specifically created to facilitate early education – and subsequently early intervention – for endometriosis.

“Alongside a menstrual education program for younger kids that has spun out of the program as well, PPEP Talk®, [which stands for Periods, Pain and Endometriosis Program] is teaching young people what’s normal and what’s not normal.

“It is fundamental to understanding their bodies, and catching early signs of concern and issues – because we really don’t have any other way,” explains Jess.

She added that the positive impact of early diagnosis when it comes to endometriosis (a disease that currently takes an average of 6.5 years to diagnose) could be life-changing for a generation of menstruating people.

“Girls are really set up not to believe their bodies from a really young age,” she says. “That is further affirmed as they go through the health system, as they talk with their families, as they try and have discussions with their mums or their teachers or their friends who might suggest that their pain is normal.

“They don’t have anything to benchmark against, and this is what programs like [PPEP Talk] can do – provide that benchmark and hopefully save years of unnecessary pain, both physical and psychological.”

“The federal department has committed funding for this program to be taken up in every state,” says Jess, “we have staff trained and ready on the ground to go and deliver these programs, and it’s now an issue for state governments to implement it. At the moment in NSW and Victoria, it’s only in private schools – it needs to be rolled out in public schools as well.”

Jess says that of the nearly 70,000 students who have been through the program, there has been a 100 per cent positive response rate.

“We have the solution, and we now have the research to support the fact that it works and is needed. We also have a federal department who has already committed funding to this, we now need the states to come on board.

“The people love it. The teachers love it. The parents love it. The PPEP Talk program goes out to Indigenous groups and provides yarning circles, they have an entire inclusivity talk around being conscious of gender and gender inequality – they have really attacked every single element of this.

“If it was implemented in statewide public schools, the difference it would make to people’s lives can’t be overstated.”