Hope to be heard: ‘My GP just told me to harden up’

27/05/22

After years of battling to be heard, years of doubting herself while managing a body that seemed to be attacking itself, Julia Argyrou has a major mission – to help save women from suffering the same pain.

That dream has become reality, in partnership with Epworth HealthCare, as a new $3 million clinic has opened in Melbourne to improve diagnosis, treatment and research into endometriosis, a complex disease that can debilitate women’s lives for decades.

“I’m hoping the Julia Argyrou Endometriosis Centre at Epworth will help women to definitely not experience anything I have,” she said. 

“We can do this and help other women out there.” 

Affecting more than 830,000 Australian females, the disease is often undiagnosed during teenage years due to a lack of understanding of the condition.

It causes tissue similar to the womb lining to grow in other parts of the body, usually in the pelvic area. The scarring and inflammation can make organs and pelvic tissue stick together, often triggering immense pain.

“I figured it was part of being a woman and I just had to deal with it,” said Julia, who was 14 when she had her first period and was told by her Mum that what she was experiencing was common.

“Our local GP just kept telling me it’s a girl’s problem, it’s a girl’s symptom, harden up,” she added.

“You start to think there’s something wrong with yourself and no one believes you.”

The new centre’s director, gynaecologist Dr Kate Tyson, said the average patient was 28 by the time they were diagnosed. 

“Our goal is to help patients get the care they need in a timely way, to reduce the chances of secondary complications related to chronic pain and infertility, which can occur from being undiagnosed,” she said.

Common symptoms include period pain, or soreness with urination, bowel movements or during sexual intercourse, while other suspected conditions such as kidney problems can also be traced back to endometriosis. 

“I’ve had women say their periods are pretty bad, but that they only spend three days in bed every month,” Dr Tyson said.

“Women should not have to do that. That’s crazy. People have normalised it over their reproductive cycle.”

A Federal Government report estimated that endometriosis costs the Australian economy $7 billion a year in lost productivity due to time is taken off work, plus another $2.5 billion in direct healthcare expenses.

Epworth patient Christina was 17 when she started struggling with period pain and was prescribed contraceptive pills by her local doctor – she finally received a diagnosis of endometriosis from her obstetrician 17-18 years later. 

“So every month I would just grin and bear it. Periods are a taboo topic so it’s not something you spoke about. It felt isolating because you were just dealing with it and thinking it was normal,” she said. 

“It was a relief to actually get a validation that what I’d been going through wasn’t normal.”

She said her endometriosis symptoms feel like “someone has got my pelvic area in a vice and just clamped it really suddenly”. 

“Career-wise, I worked in a really male-dominated industry. You never wanted to be seen as weak so I would just hide it during the day, but when I relaxed during the night it would be uncontrollable pain that would put me on the floor in the bathroom.”

Maddy, another Epworth patient, said endometriosis had given her both mental and physical pain, and “caused a lot of problems” at high school.

“I get pain in my legs, in my back, the nausea can be debilitating. I think a massive part of endo that gets misunderstood is the pure exhaustion that your body feels,” she said. 

“Having people who understand, that’s a really important and integral part of managing endometriosis.

"People don’t believe you – that’s the one thing I’ve really struggled with, and there is a massive impact on your mental health. This constant guilt makes you feel a lot of baggage and feel like you have to justify yourself.”

As the first Endometriosis Nurse Coordinator in Victoria, Nikki Campbell’s role at the Julia Argyrou Centre at Epworth is to help patients feel heard and their problems understood.

“Endometriosis patients make up one in nine people assigned female at birth – that's as many as diabetes and asthma in Australia. The need for better, more personalised support is there,” she said.

“Every day, I receive emails through the centre website from people who are desperately looking for support. The messages say things like, ‘I've just come across this centre and help me!’ That's exactly what we're here for.”

Epworth patient Sonja was diagnosed with endometriosis 22 years ago, having been told in her teens by her general practitioner that “you’re perfectly normal, your body’s just ovulating and telling you you’re ready to have a baby, so if you have a baby you’ll be okay.” 

“And I said, ‘I’m 17’. I could barely walk three days a week, I would hobble into work, it was horrible,” she recalled. 

Sonja did eventually give birth later in life, but by that stage, her fallopian tube was blocked and her left ovary was not working.

“We made 37 weeks and he was delivered by caesarean section. My symptoms started to come back quite quickly, I have to take pain medication to manage it daily,” she said.

While many women fear endometriosis will harm their chances of having children, mother-of-four Julia is one of many sufferers for whom pregnancy is often a time of relief from the pain due to the change in hormones.  

“Fertility was always a big question mark and I was very lucky to have four beautiful and healthy children,” the new centre's founder said.

“Pregnancy is one of the only times in my life when I didn’t have any symptoms of endometriosis.”

With the support of her husband Michael and other donors, she was able to raise funds to establish the centre at the Richmond campus of Victoria’s largest private hospital operator.

Julia hopes it will give women the help they need to manage the condition, which she struggled to find for so long.

“As a mum, the last thing you want to do is put this burden on your family, and there have been numerous times when I’ve passed out and my kids have had to pick me up from the floor,” she said. 

“Putting that burden on them is just terrible.”

Michael, who she met about 25 years ago, said it had been “just horrible” seeing his wife suffer so much with the condition.

“Seeing my kids feel for their mother and feel her pain, it’s what’s driving us and compelling us to just do something,” he said. 

“To be told you’ve done every treatment and there’s nothing else you can do apart from enduring, we just can’t accept it.”

For patient Christina, the new centre brings hope for generations of women who suffer from endometriosis, so they are no longer “just fumbling their way through the health system”.

“It’s really important to have people around you that listen, don’t judge, and really understand,” she said. 

“I think it’s important that the conversation is happening around endometriosis whether it’s in a workplace, in a medical field, to support people, to hear the symptoms – that’s a future that will be really important for women.”