When Matilda has her period, the cramps and other symptoms are so extreme she has to take a few days off school but she says many people are “dismissive” of the extent of her pain.
The 17-year-old has been struggling with endometriosis since she was in year 7, saying it affects her school, work, and friendships.
More than 830,000 Australians suffer from endometriosis, with the condition often beginning in the teenage years and it takes, on average, around 6.5 years to diagnose.
Endometriosis is where tissue similar to the lining of the womb grows in other parts of the body, and common symptoms include pelvic pain that “puts life on hold” around or during menstruation, and it can impact fertility in some cases, according to Endometriosis Australia.
Matilda says some people don’t understand the extent of pain that people with endometriosis experience “because it’s very different to just a period”.
She says a big challenge she faces is people being dismissive of her condition when she’s asking for extra time to complete tasks, like school assessments.
The 17-year-old says people have made comments such as: “It’s just a bad period, it’s fine, you just need to take some Ponstan, have a hot water bottle, have some ginger tea or something, do some yoga”, which Matilda says “can be very dismissive”.
She didn’t learn about endometriosis or pelvic pain at school, but sought medical care due to the onset of severe cramps, and she is concerned many young people do not know what the condition is.
“I think some people have heard of it, but nobody really knows what it means and the cause of it and the implications of it,” she says.
“I think it’s important to talk about it because I know that a lot of girls probably have it and you really don’t know if you have it unless you have keyhole surgery, which is really hard to do.”
‘They don’t have to suffer in silence’
Matilda wants better education about endometriosis in schools.
“So people know that if they’re experiencing that kind of pain, that’s not normal,” she said.
A Queensland Education Department spokesperson says there is no higher priority than the health and wellbeing of students.
“As part of the government’s $100 million student health and wellbeing package, our GPs in schools program means students may seek information and advice relating to issues such as sexual and reproductive health, or pelvic pain, including endometriosis, while at school,” the spokesperson says.
“Health and wellbeing education is also provided in all Queensland state schools from prep to year 10 through the Australian curriculum, where developmental and physical changes associated with puberty are explored.”
Education Minister Grace Grace says the state government made an election commitment in 2020 to partner with Queensland charity Share the Dignity.
“The Palaszczuk government has recently announced a $13.3 million investment to expand our partnership with Queensland-based charity Share The Dignity to provide a comprehensive package of period products and education in Queensland schools,” she says.
Ms Grace says the partnership allows every Queensland school to access the Period Talk education program for free, “which normalises and encourages discussions about periods and includes information on period pain — including pain that may be caused by endometriosis”.
The Period Talk education program is aimed at students in years 5 to 8 and includes a teaching package, presented by young people, to be delivered over four weeks.
The program includes information about cycles, periods and the environment, PMS, nutrition, pain management and stretches, sanitary products, how different cultures approach periods and what a healthy period should look like.
As of May 25, 59 Queensland schools have accessed the Period Talk program, with another 62 schools receiving the program as part of the delivery of the Dignity Vending Machine.
The Pelvic Pain Foundation of Australia wants $190,000 in Queensland government funding to roll out its Periods, Pain and Endometriosis Program (PEPP Talk) at 80 schools, which focuses on the neuroscience of pain, normal menstruation, and how to recognise abnormal symptoms.
The program already has $5 million in federal government funding to deliver the program in each state and territory, if the respective jurisdictions also provide funding for the program.
The program, aimed at year 10 students, is delivered by educators who have backgrounds in the health sector, and are trained by gynaecologist and pain physician Susan Evans.
Dr Evans says they have delivered the program in 25 independent Queensland schools, with 70 per cent of those locking in dates for next year.
“But we’ve had to turn away more independent Catholic schools, and we’ve had to turn away a lot of government schools because we’re only allowed to a certain number until the state government signs on,” she said.
Dr Evans says PEPP Talk is a fun, age-appropriate and positive program that helps students determine whether their pain is normal, understand a range of symptoms associated with periods and pelvic pain, and whether they may have endometriosis and how to get help.
The program has been delivered in South Australia since 2019, Western Australia since 2020, and in Victoria, NSW, the ACT and Tasmania since February this year across 413 schools.
“We’re in full support of Share The Dignity, but we don’t see that as a reason for not having PEPP Talks,” Dr Evans says.
But the Education Department says a large number of organisations approach the department seeking a funding commitment to deliver programs in schools.
“It is not possible to fund all these programs centrally. However, schools are resourced to make local decisions about programs or resources that support the needs of their students,” the spokesperson says.