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University hosts patient-focused endometriosis forum

7 September 2017
Share perspectives on endometriosis at EndoActive

Endometriosis is a painful and debilitating condition that affects around one in ten women worldwide. There is currently no cure, its causes are still unknown, and it takes an average of 10 years to get an accurate diagnosis. 

Co-founders of EndoActive Syl Freedman (right) and her mother Lesley Freedman.

The University of Sydney will host the second EndoActive Endometriosis Conference for doctors and patients to share their perspectives on endometriosis on 9 September 2017 at the Charles Perkins Centre.

Endometriosis is a painful and debilitating condition that affects around one in ten women worldwide. There is currently no cure, its causes are still unknown, and it takes an average of 10 years to get an accurate diagnosis.

The patient-focused forum will feature distinguished medical specialists, health professionals, scientists and academics sharing their knowledge and insights into the disease. The latest research and trends in endometriosis treatment and self-management will be discussed.

EndoActive was founded by Syl Freedman and her mother after Syl’s own struggle with endometriosis, which went undiagnosed for 10 years. The not-for-profit organisation aims help women and girls with endometriosis by empowering them with knowledge and support.

“An estimated 176 millliom women around the world suffer from endometriosis,” said Syl Freeman, who is also completing a Master of Philosophy (Medicine) at the University of Sydney.

“However, despite these high numbers, there is still very little that’s known about the disease. It’s shocking to me that so many women have endometriosis and yet many people have never even heard of it.

“We seriously need more public awareness of this disease and patients are desperate for more information,” she said.

Dr Robert Markham, scientist and senior lecturer in obstetrics and gynaecology, said research is underway at University of Sydney which aims to determine how endometriosis causes pain and infertility, to understand the endometriosis patient experience, and ultimately improve management and quality of life for women with the condition.

“We’re currently working on a non-invasive test for endometriosis to make diagnosis faster and easier,” said Dr Markham.

“Endometriosis is a progressive disease and long delays before diagnosis and treatment allows the condition to advance - so there is an urgent need for a sensitive and specific test for the diagnosis.

“Research lead by Dr Fred Wong in our team has used proteomic technology to identify eleven potential protein biomarkers in urine from patients with endometriosis. The detection of these candidate biomarkers is novel and significant.

“The successful development of this screening test would have a huge social and economic impact and could revolutionise the diagnosis, treatment and management of endometriosis,” he said.

EndoActive is collaborating with the University of Sydney to conduct research on the patient experience of endometriosis.

Syl Freedman said: “As part of my Master’s degree, I’m conducting a study into the impacts of endometriosis on patient’s lives.

“Women with endometriosis are encouraged to take part in this patient-directed study by sharing their experiences on an online survey. It’s completely anonymous and voluntary, and this type of research is strengthened by having more participants.”

About endometriosis:

Endometriosis occurs when tissue similar to the lining of the womb grows in other parts of the body, commonly in the reproductive organs but often in the bowel and bladder. Endometriosis often causes severe pelvic pain and infertility.

Currently the only way to diagnose the disease is via keyhole surgery and biopsies, which can sometimes see a delay of up to 12 years from the onset of symptoms until a definitive diagnosis is made.

Event details:

What: EndoActive Endometriosis Conference
When: 7.30am - 5pm, Saturday 9 September 2017
Where: Charles Perkins Centre Auditorium
Register here

Kobi Print

Media and PR Adviser (Health Sciences)