At 24, Freedman set up Australia’s first patient-centred endometriosis conference, beginning a radical process of opening up information to millions of women suffering a debilitating condition

It’s a grey day in May and I’m sitting in a conference hall at Sydney University, watching a young woman cry as she addresses a large audience. The woman, Sylvia Freedman, is explaining that it’s the first time specialist doctors, GPs and healthcare professionals have been invited to attend a conference alongside patients and the general public to discuss endometriosis. But it’s taking her a while to say all this because she’s crying. Her mother, Lesley Seebold Freedman, is trying to help her but she too is crying.

And soon enough, so am I.

Endometriosis can do that to you. It can reduce you to tears at the most inconvenient times because the pain and fatigue can be so overwhelming. But that’s not the reason Freedman is crying. She’s crying because, at 24, this is her proudest moment and the highlight of a pretty extraordinary 2015.

“The day of the conference was one of the best days of my whole life,” she says now. “It was so emotional – all of us were in tears the whole day.

“It was a mixture of feeling so sad that everyone had gone through such a shit time – and was still having to go through it – but also so uplifting that we were all in one room learning more about it.”

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Endometriosis is a disease in which tissue similar to the lining of the uterus (endometrium) is found outside the uterus, most commonly in the pelvic cavity. It can grow on organs including the ovaries, uterus, bowel and pelvic sidewall, causing inflammation and pain.

The most common symptoms are painful periods, infertility, painful ovulation, pain during or after sex, abnormal bleeding, chronic pelvic pain and fatigue. Despite the fact the disease affects 176 million women worldwide, the only definitive diagnosis is by laparoscopic surgery. It takes an average of eight-and-a-half years for a woman to be properly diagnosed with the condition.

This is frustrating for women who live with the disease, but even more frustrating is the lack of knowledge about it and the lack of information available on its long-term management.

Freedman was diagnosed with endometriosis in 2012, and had an operation to remove the lesions.

“My surgery was a success for my doctor – they found endometriosis, got it all out, and I was OK, job done.

“But for me, it didn’t feel like a success because I didn’t feel any better and, in fact, I had a few months of feeling good but then I started to feel much worse.”

There is no cure for endometriosis. Laparoscopic surgery can remove endometriosis tissue but it can grow back. Surgery can also make the pain worse by creating scar tissue.

“Having no information and no advice on how to cope afterwards and what to expect, it was driving me insane. It gave me such bad anxiety, I felt like people were withholding information from me,” Freedman says.

Freedman and her mother spent hours searching the internet for more information about the disease. After Sylvia’s second surgery within 18 months, Lesley discovered a drug called Visanne had been successful in treating endometriosis-related pain and inflammation in South America, parts of Europe and Canada. But Bayer, the pharmaceutical company that made the drug, refused to make it available in Australia, saying there was not a big enough market for it.

But a campaign led by the Freedmans on Change.org proved there was huge demand for such a drug and the petition soon garnered 74,500 signatures and almost 20,000 comments. Bayer made the drug available in Australia on 3 March.

“When we launched the petition on Change.org to get Visanne made available here, that wasn’t just so I could try the medication. It was for everybody, it was a matter of social justice, really. What’s available to other women overseas, we should have available to us. That’s only fair,” Sylvia Freedman says.

But reading the 19,500 comments on the petition made her realise she couldn’t give up there.

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“When we had the petition going, we were reading reading comment after comment of people telling their stories and just begging for information. When it was all over, we didn’t want to lose all those people, that’s why we started the Facebook page.”

The chain of events that followed has altered Freedman’s life: the Facebook page quickly became EndoActive, a not-for-profit patient advocacy group, and the conference idea quickly followed. The conference inspired her to enrol in a master’s of public health so she could take EndoActive to its full potential. And in November, she was named a finalist in Cosmopolitan magazine’s “fun fearless female” woman of the year competition.

While she was not the ultimate winner in the “game changer of the year” category, there is no doubt that in the past 12 months Freedman has changed the game for many thousands of women living with endometriosis in Australia. And that day in May, she was facing the achievement of a dream born of sheer frustration.

The conference “was a pretty groundbreaking thing to happen” Freedman says now. “Somehow we pulled it off with 13 specialists, not having any medical background or anything like that whatsoever.

“I decided then that I really did want to be able to spend more time on EndoActive but I needed to upskill, and that’s why I chose to get myself into a new degree.”

Facebook Twitter Pinterest Sylvia Freedman: ‘Endo is a major public health issue.’

This time last year, Freedman could not have imagined she would be responsible for bringing the first endometriosis drug to Australia, would successfully hold a conference where patients could listen to health experts explain the latest research on treating and managing endometriosis, that she would have started a new degree and be named a finalist in a national competition.

To the people who told her the conference idea was a dream, she says it has been “really cool” to prove them wrong.

The conference also led to a Guardian global investigation into endometriosis and its effects on women. Hundreds of thousands of women were given a voice – and crucial information about their hidden suffering.

But work in this area is far from over.

“Endo is a major public health issue. It costs the country about $7bn a year, that’s with loss of productivity as well as costs of surgery and all those sorts of things,” Freedman says.

“It means that in our most productive years – and I don’t mean ‘reproductive years’ – women are being forced out of jobs, they can’t work physically. There’s a lot of really devastating effects.”

Being broke is another side effect of endometriosis, Freedman says. Many women have to take days off work month after month. Some lose their jobs and the cost of treatments is high. Visanne can range from $60 a month to $120 but there is also the cost of doctor visits, painkillers, surgery and the many other prescriptions women with endometriosis regularly need filled. Endometriosis affects a similar number of women as diabetes and costs the economy at least as much, yet it is not even listed on the federal Department of Health’s website.

Getting a diagnosis for me wasn’t that helpful. I had a name but I still didn’t have any tools to help me feel better Sylvia Freedman

“We’d like to continue to lobby at a government level for changes,” Freedman says. “Getting a medical treatment available here was amazing; the next step would be to get it on the PBS because it’s simply not affordable. There’s also a high price discrepancy between chemists.”

Among other plans for EndoActive in 2016, she would like to develop care packages to be given to girls and women at their first laparoscopy.

“Getting a diagnosis for me wasn’t that helpful,” she says. “I had a name but I still didn’t have any tools to help me feel better.”

The care package would contain information on what to expect, how to cope, how to manage pain medication and strategies for managing the condition in the long-term, including diet advice and tips on dealing with anxiety.

EndoActive would also like to use its database to collect more information. For example, doctors now know that multiple laparoscopies can increase pain because of the development of scar tissue, but some women with endo report having up to 17 laparoscopies.

“Hearing that makes us sick and we want to know how many women are having multiple laparoscopies,” she says. “There’s just so much that isn’t known and that’s because there isn’t any data being collected.”

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The main aim of EndoActive is to empower women with information so that they can take control of their illness and its management. To that end, EndoActive produced a DVD of the Sydney conference and Freedman wants it on the shelves of public libraries around Australia.

“There is so much that I have learnt, but I have learnt it the easier way,” she says.

In fact, because of all she’s learnt, Sylvia says she now lives pain-free “pretty much 100% of the time” and she wants others to be able to improve their quality of life as well.

“The trauma of not having enough information, not getting enough help, has made us so passionate about getting informed and getting the tools to women to help themselves.

“If we had millions of dollars, we’d be making sure every girl was given the DVD prior to their first surgery.”

But money is a a problem. The conference was partly funded by Freedman’s parents, and the ticket sales didn’t cover costs. The health department and pharmaceutical companies have knocked back requests for funding so far, but Freedman is not ready to give up yet. There is one thing that keeps her going:

“You never forget what it’s like to be in pain every day, but when you get a little reminder of it – it might just be one bad day out of months – you’re like, ‘how is anyone living with this every day?’

“You can’t, it just rips apart your life and you can’t be doing the things you want to be doing. Just having a diagnosis, or just having the surgery and leaving it at that, isn’t enough.”

As a woman with endometriosis who attended the May conference, this writer can say it was definitely a game-changing achievement of 2015.