New hope for endometriosis sufferers

Our local GP just kept telling me it’s a girl’s problem, it’s a girl’s symptom, harden up. You start to think there is something wrong with yourself and no-one believes you.

Key points:

• Endometriosis affects one in nine
• It takes seven to ten years to diagnose
• Mystery surrounds the cause

Years of suffering with endometriosis has prompted a Melbourne woman to help establish the Julia Argyrou Endometriosis Centre at Epworth to improve diagnosis, treatment and research into the disease.

Julia Agryrou was fourteen when she got her period and was told the associated pain was common. She figured it was part of being a woman and she just had to deal with it.

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

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

Years to diagnosis

Seven years later, Mrs Argyrou received an endometriosis diagnosis, after visiting a gynaecologist.

When diagnosed with endometriosis, a common question women have is whether they will be able to have children. Mrs Argyrou has four healthy children and says her pregnancies were the only time she didn’t have any symptoms of endometriosis.

The $3-million Julia Argyrou Endometriosis Centre at Epworth has been established with a donation by Mrs Argyrou and support from other donors.

Mrs Argyrou said she wants the centre to help women avoid experiencing what she has gone through.

“We can do this and help other women,” she said.

Centre Director appointed

Gynaecologist Dr Kate Tyson is the Director of the Julia Argyrou Endometriosis Centre at Epworth.

While undertaking her gynaecological training, Dr Tyson observed endometriosis care was under- resourced and treatment was not coordinated.

“Endometriosis affects each patient differently and there’s often been fractured care between clinicians and specialists involved in endometriosis care,” Dr Tyson said.

“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.“

Dr Tyson says symptoms and pain of endometriosis have been unfortunately normalised for too long, with an ‘she’ll be right’ attitude.

“The average patient is twenty-eight by the time they are diagnosed. On average, they’ve been dealing with symptoms for seven years before they are diagnosed and we want to reduce that.”

Common symptoms women experience include period pain, or pain with urinating, bowel movements or during intercourse. Often, those ongoing symptoms are not flagged as possibly being due to endometriosis. Sometimes, presentation to a doctor for other conditions such as kidney problems, can also be traced back to endometriosis.

In less common cases, endometriosis in the chest can lead to shortness of breath around the time of a woman’s period, sometimes leading to a partial lung collapse.

Dr Tyson said she was drawn to the job as Director of the Julia Argyrou Endometriosis Centre at Epworth to help women with endometriosis have a better quality of life.

“I have a passion for people trying to live their best life,” Dr Tyson said.

“I’ve had women say their periods are pretty bad, but they only spend three days in bed every month. Women should not have to do that. That’s crazy. People have normalised it over their reproductive cycle.”

While doctors are yet to establish what causes endometriosis there is a genetic link. If your mother or aunt has endometriosis, there is a 30-50 percent chance you will also have it.

Research is a big focus of the Julia Argyrou Endometriosis Centre at Epworth. One project looking at genes, aims to develop a diagnostic test that does not rely on invasive procedures.

To help educate women about endometriosis, Epworth has produced an Endometriosis Patient Guide which can be ordered from the Julia Argyrou Endometriosis Centre at Epworth.

An animation on the site answers questions including ‘What is endometriosis?,’ ‘How do you know if you have endometriosis?,’ ‘What is the treatment for endometriosis?’ and ‘Can I fall pregnant if I have endometriosis?’