FOLLOWING years of excruciating pain and an eventual diagnosis of a little-known condition, endometriosis is something Sylvia Freedman hopes will now be better serviced with increased support and information.
The 24-year-old from Sydney, who was diagnosed with endometriosis three years ago, together with her mother Lesley last year established EndoActive Australia & NZ – a not-for-profit organisation designed to raise awareness about the disease.
“I had never even heard of it; I had no idea what it was,” Freedman recalled of being diagnosed.
She always had “excruciatingly painful” periods before other symptoms, such as extreme fatigue and back pain, developed later on.
Endometriosis is a complex gynaecological disease which causes internal inflammation and adhesions, resulting in chronic pelvic pain and often infertility. It affects approximately one in 10 women and girls worldwide.
Since being diagnosed, Freedman has had two laparoscopic surgeries and elected to undergo ovarian stimulation and egg freezing as a possible insurance against potential infertility.
EndoActive began off the back of a petition, started by the mother-and-daughter duo, to bring Visanne – a medication for endometriosis which at the time was available in some countries but not in Australia – to this country.
The online petition garnered an impressive 74,500 signatures, and subsequently, multinational pharmaceutical company Bayer has brought the medication to Australia.
Having already raised the profile of endometriosis dramatically in Australia, EndoActive will this month hold its first national conference at the University of Sydney, titled “Shared Perspectives”.
The program will feature 13 medical specialists, health professionals, scientists and academics from all around Australia. Freedman notes that this conference is unique in that consumers have created it for consumers – as well as health practitioners seeking to upskill.
She noted that the positive response EndoActive has received is evidence of the need for greater knowledge and awareness.
“They were just crying out for help,” Freedman said of fellow sufferers who signed the petitions.
Now she believes people are starting to discuss the issue more openly. “Getting people to talk about it is really important … They felt lost before, and now they feel like they’re not alone; they feel that someone is listening to them, someone has heard them.”
For more information, visit www.endoactive.com.au.
The EndoActive Conference is on Saturday, May 16. For more details, visit www.dcconferences.com.au/endo2015/HOME.
Lesley (left) and Sylvia Freedman are raising awareness for endometriosis.