This month, we’re celebrating amazing women. In our new column, “The Leap,” we’re exploring that little transition time between one part of your life and the next. That moment of time when a person evolves into a whole entity … and exactly how it happened.
In this instalment of the Leap, we’ve profiled endometriosis activist Syl Freedman. At just 25, Syl has achieved more than most people do in an entire lifetime. After experiencing chronic pain from the day she got her first period, she was diagnosed with endometriosis at the age of 21. That same year, she used a crowdfunding platform campaign to successfully lobby Bayer to make an endometriosis drug, Visanne, available in Australia.
This lead to her starting EndoActive alongside her mum—a charity organisation on a mission to educate women, especially young girls, with evidence-based research and the right information about endo. She also set up Australia’s first patient-centred endometriosis conference in 2014 and this month, became the first patient activist to speak at the World Congress on Endometriosis in Canada. For the month of May, EndoActive has also teamed up with U by Kotex to raise awareness of the early signs of endometriosis.
Syl has now been pain-free for two years and works as a full-time EndoActivist, between working and studying at uni. Here, she shares her inspiring story about how she made the leap from endo sufferer to the fearless leader of the endo cause in Australia.
On how she was diagnosed with endometriosis
“From the first day I ever got my period, it was painful. But my mum (who feels terrible about this now) told me it was normal. She told me, “I had shocking period pain and I guess you do too, darling. It’s awful but that’s just the way it is.” She wasn’t to know just how much more painful my periods would eventually become and she herself had never been told that periods aren’t meant to be painful but we know this now.
As I grew older, my periods became more and more painful to the point where I was missing high school, then missing uni, then losing jobs that I loved due to pain and my employers not believing or understanding what was going on. I was completely confused as I’d never even heard of endo and had no clue that the chronic pelvic pain, fatigue, weak immune system, chronic UTIs, digestive disorders and low mood I was experiencing every single day was actually endometriosis.
I ended up seeing a urogynecologist about some ‘light bladder leakage’ that I was experiencing—which in hindsight is absurd because that was the least invasive or severe symptom I had! What about all the pain I was in?! I never felt that was serious enough to go and see a doctor about and that is incredibly sad.
The appointment I had with the doctor that day—when I was 21 years old and had been living in chronic pain for years—was the first time I ever heard the word ‘endometriosis’. He booked me in for laparoscopic surgery on the day of my appointment. I had the surgery 2 months later and it was confirmed that I had endo.”
On creating EndoActive
“You’d think that after my diagnosis, things would get easier because then at least I knew what I was dealing with. Unfortunately, that was not the case. For the next 2 years, I struggled with a serious lack of information and enormous confusion about endo. I continued to lose jobs, live with chronic pain that I had no idea how to manage and wound up having a second surgery.
That’s when my Mum started researching endo more heavily—while I was incredibly sick and depressed. She read about a drug called Visanne that was used to treat endo available overseas but not in Australia. We started a change.org petition, which, to our surprise, went bezerk and got 74,500 signatures. Thousands of people left comments on that petition—mainly women with endo. My mum and I read every single one and were in tears every night.
That’s when we decided we couldn’t let all these people disappear after the life of the petition. We recognised that there were thousands of women who were desperate for evidence-based information, validation and a platform to share their stories. We had access to the best health care and best doctors but we still felt like we were in the dark. We knew we weren’t the only ones. What about the women in rural Australia? We just had to do something about it and let women know they were not alone. More importantly, we wanted to be the link between the doctors and the patients and give patients like me and carers like my Mum the information they so desperately needed.
We created EndoActive on Facebook. Shortly after we started out page, Bayer announced to us that our petition was successful and that they would release Visanne in Australia, which they did in March 2015. EndoActive was well on its way by then.”
On being pain-free
“I’ve been pain-free for over 2 years now. I’ve managed to get my symptoms under control and learned the importance of self-management. However, before that happened I was totally unable to work. When your pain is at its worst, working is incredibly difficult, if not impossible.”
On what being an EndoActivist is like
“Being an EndoActivist is bloody hard work. Because I work completely voluntarily for EndoActive and I’m studying full time I’m often going between an odd paid job (if I’m lucky), uni (I just finished a Master of Health Communication and just started a Master of Philosophy Medicine), assignments, doing interviews or media stuff for EndoActive, communicating with girls who have endo and have written to me asking for help, working on EndoActive and keeping our facebook page/website/blog/million emails manageable with my mum and co-founder, Lesley.”
On the best part of being an EndoActivist
“Helping other women feel less alone and empowering them with information is the best part. If I can help a woman in any way—whether that’s living a life with less pain or having the confidence to talk about endo with her family, partner and friends—I’m happy.”
On the most challenging part
“The most challenging part is not letting the stress of being pulled in a million directions get to me. Listening to music and going for walks to get out of my headspace is the best remedy for that. Also, EndoActive is a full-time unpaid job. So, the stress of not being financially independent I find incredibly stressful and it gives me major anxiety. I have to try to stay calm to keep my endo symptoms at bay. (They flare up when I’m stressed). I often feel anxious and have trouble sleeping so I listen to podcasts every night to fall asleep and follow an anti-inflammatory diet. That really helps my endo.”
On making ends meet as an activist
“When I started EndoActive, I was studying full-time and bartending/waitressing. For the past year I’ve been working 1 day a week to give myself some pocket money, however, I lost my job in February. I’m incredibly lucky that since I started EndoActive full time and also I study full time, my parents support me. Without their financial support, EndoActive wouldn’t still exist. It is 100% my passion but it certainly does not pay ANY of the bills.
I wouldn’t call waitressing a stable job so my advice for women who want to leave their stable job to start a passion project is – be very careful. If your passion project is a not-for-profit like mine, don’t expect to make any money from it. HOWEVER always follow your passion. Whether that’s in a full time or part time capacity – DO IT. I adore working for EndoActive. Yes, I wish it paid the bills and hopefully, I’ll figure out a way to support myself but for right now, I’m doing what I love and helping women at the same time.”
On how she got involved with U by Kotex
“Years ago, I went to a party at Charles Sturt University with a girlfriend of mine and was introduced to a friend of hers called Jenna. We never saw each other again but she followed EndoActive’s journey and went on to work at a PR company after uni. She saw us receiving an award last year and we got back in touch. One thing lead to another and she connected us with her client—U By Kotex. It was a great match. Girlfriends are the best! Like EndoActive, U by Kotex is all about supporting and championing young women, and inspiring and empowering girls to stay strong whatever womanhood throws at them.”
For every free sample ordered throughout May, U by Kotex will donate a dollar to EndoActive . Head to www.ubykotex.com.au/sample to help support our EndoSisters.