Welcome to our May newsletter. We share the inspiring story of Syl Freedman and how she transitioned from being an endo sufferer to being a full time EndoActivist, raising awareness, supporting other women as well as studying at uni.
One in ten women are affected by endometriosis (‘endo’)
Syl Freedman experienced chronic pain from the day she got her first period, and 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. The overwhelming responses from women with endo lead her to starting EndoActive alongside her mum. EndoActive is a registered charity with its mission to educate women, especially young girls, with evidence-based research and the right information about endo. Syl held Australia’s first patient-centred endometriosis conference in 2015 and has just returned from Vancouver where she was the first patient activist to speak at the World Congress on Endometriosis. For the month of May, EndoActive teamed up with U by Kotex to raise awareness of the early signs of 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.” “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.
Read more: Syl’s story continued ….
For more information and to book tickets to the 2nd EndoActive Conference: EndoActive
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