June 18, 2016

My beliefs, my dreams & the story of EndoActive.

sylvia Uncategorized activism, advocacy, awareness, change.org, donate, endo, endoactive, endoactiveawareness, endometriosis, help, motivation, Visanne 4 Comments

Hey guys. Today I want to share with you my beliefs, my dreams for EndoActive and our story – why we’re here. It really is an incredible one and it involves all of you, so please, please read to the bottom. <3

My name is Syl Freedman, I’m 25 and I have Endometriosis. We call it Endo.

My Mum, Lesley, and I started EndoActive in August 2014 after campaigning to have a medication used to treat Endo available here in Australia. We got 75,000 signatures on our online petition (thanks to many of you for signing!!) and amazingly, we were successful. Visanne was released in Australia in March 2015.

It has helped many women, myself included, to finally live a life free of pain and most importantly, provided another treatment option for Endo.

After achieving the impossible, we had a fire in our bellies and felt determined to keep going.

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April 22, 2016

3 uni assignments on Endometriosis in 4 days

sylvia Uncategorized activism, advocacy, awareness, endo, endoactive, endoactiveawareness, endometriosis, health communication, masters, motivation, sydney uni, uni 0 Comments

In 2014 I was incredibly sick with Endo and had been for years. At that time I
✖️Couldn’t work due to pain
✖️Barely made it to uni
✖️2nd laparoscopy with shocking recovery
✖️Awful pain and fatigue all the time
✖️Miserable. Flat. Didn’t see a future.
✖️constantly medicated
✖️Cried A LOT

If you told me then that in 18 months
✅I’d be pain free, learned how to self-manage my Endo, healthy, full of energy
✅Legalised a drug in Australia to treat Endo (Visanne)
✅Started a change.org petition with 75,000 signatures
✅Built an online community of nearly 8000 incredible people raising awareness of Endo together
✅Froze my eggs
✅Held a conference on Endometriosis at University of Sydney
✅Started my Masters in Health Communication at Sydney University

I would never ever ever ever have believed you in a million years. Ever.

For those of you who are struggling to cope, living in pain, can’t see a way out – I have been there!!

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February 10, 2016

Open letter to CNN, Nadia Kounang & Dr Scott Sullivan Re: Your article on Endometriosis

sylvia Media, Uncategorized activism, advocacy, awareness, CNN, coming out, endo, endoactive, endometriosis, feminism, flare up, Lena Dunham, media, motivation 22 Comments

Dear CNN, Nadia Kounang and Dr Scott Sullivan,

Yesterday my absolute hero, Lena Dunham, did something incredible for Endometriosis. She got the world talking about it. Dunham announced that she’s been forced to pull out of the promo tour for her hit TV series GIRLS due to an Endo flare-up. I was heartbroken for Lena. But, as the Co-founder of EndoActive – an Endometriosis Activism Group – I was grateful and proud that she had shared this information on social media and thrilled that the media had picked up on it. Any publicity for Endo is good publicity, right? Wrong.

I am absolutely horrified by what you, CNN, have published. You had not only an opportunity to report on an under-publicised, insidious disease that is destroying lives and desperately needs to be taken seriously, needs attention and needs funding but you had a responsibility to report factual, evidence-based research supported by compassion, care and a positive message. To my horror and the horror of the thousands of women I represent, you have grossly missed the mark and published instead an unsavoury, chauvinistic, factually incorrect, medically and morally irresponsible piece of writing that helps no one and in fact undoes so much of the hard work that EndoActive and so many others are doing daily.

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January 17, 2016

Egg freezing: 1 year on

sylvia Egg Freezing, Mind Body Spirit, Uncategorized awareness, egg freezing, emotions, endo, endoactive, endometriosis, fertility, genea, hormones, mind body spirit, motivation, pain, post egg retrieval, recovery, training 8 Comments

December 2015

Egg freezing, 1 year on. A little over 1 year ago I was bed ridden yet again, not from Endo directly but the threat of infertility made me decide to freeze my eggs just in case. Once the very few eggs I managed to produce were removed from my body I felt strangely sad, like maybe they’d never be there again, in the worst physical pain I’ve ever felt and utterly shattered. Knowing that after all my body had been through from egg freezing, I’d likely need to do it again to secure a decent amount of eggs.. Was depressing. I felt so lucky for the opportunity to use incredible technology and had a family that could afford it, but devastated that at 23 this was my life. I should be renting a flat, not freezer space for unborn children!
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August 31, 2015

skipped pill

sylvia Uncategorized awareness, endo, endometriosis, fatigue, hormones, medication, motivation, pain, the pill, Visanne 0 Comments

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August 10, 2015

Visanne Day 1

sylvia Uncategorized awareness, emotions, endo, endoactive, endometriosis, fertility, fitness, goals, healthy eating, hormones, kayla itsines, motivation, pain, the pill, treatment, Visanne 1 Comment

Side note: I wrote this post on July 3rd but it mysteriously got deleted. I started again. Now it finally makes it’s way back onto my blog. However I am back-dating it so it is clear which date I started taking Visanne.

3.7.15

So today is Day 1 on Visanne. I’ve had my box of Visanne sitting in my bathroom draw since it was released on March the 3rd this year. Since our wildly successful campaign on change.org to have it released here in Australia, so many people have asked me how I’m going on it – assuming that I’d be taking it as soon as was made available. However, the campaign to have Visanne released in Australia & NZ (unfortunately it was not released in NZ sorry Kiwis!) was not just about me, nor was it ever designed to only benefit me. It was based on the principle of equal opportunity and that if there was a treatment option for Endo available overseas, we all deserve the opportunity to try it if we want. All of us. And that is what we achieved.

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April 28, 2015

Breaking bad habits. It’s my 1 year post-op anniversary. This is what I’ve learned.

sylvia Mind Body Spirit awareness, behaviour, CBT, emotions, endo, endo relapse, endoactive, endometriosis, goals, happiness, meaningful work, mind body spirit, mood, motivation, pain, positive psychology, purpose, self-awareness, training, work 2 Comments

This time a year ago I was lying in a hospital bed up to my ears in painkillers recovering from my second laparoscopy while all my friends were sinking beers and playing two up. I was looking forward to reaching this ANZAC weekend and my 1 year post-op anniversary fighting fit – the way I’ve felt for months. But unfortunately I’ve had a relapse and lately my health has not been great. Getting the flu coincided with an Endo flare up, both of which have stuck with me off and on for the past 4 weeks. (To me this is a real indicator of the link between Endo and the Immune System.)

15 days of antibiotics has trashed my gut and my liver. 5 weeks without training has had a major impact on my energy. My muscles feel like they’ve been stitched together with a rope of crunchy glass. My body has been knocked around and its protective layer which I’ve spent months building up has been chipped away at. But unlike the last time I had an Endo relapse, this time I have backup. I have tools in my belt to help my rebuild. Everything I’ve been taught, everything I’ve learned, read, diarised and practiced over the past 8 months is going to help me gradually get back to where I was before. But getting to that point wasn’t easy. It meant growing up, being real and breaking some bad habits.

Happy one year anniversary Me.

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April 1, 2015

Chattin’ to men in suits about pelvic pain. At a cocktail party.

sylvia Uncategorized activism, advocacy, awareness, chonic pain, coming out, emotions, empowerment, endo, endoactive, endometriosis, men, motivation, pain, pelvic pain, pelvic pain foundation of australia, proud to be out, public dialogue, symptoms 1 Comment

Me & Prof. Lorimer Moseley of University of South Australia

This is the second installment of Chattin’ to Blokes about shit you never thought you’d be chattin’ about in just a couple of weeks. It was once again an unexpected but uplifting experience. It reminded me of the night I wound up talking to a group of boys about period pain at the pub not long ago. You can read about that here.

On Tuesday my Mum / Co-founder of EndoActive and I flew to Melbourne for the launch of the Pelvic Pain Foundation of Australia. Before we arrived at the launch we were feeling quite out of place and a little nervous that we wouldn’t know anyone. Cocktail parties are for mingling and there’s only so many wines you can quietly inhale and only so many paintings you can point and nod at before someone notices that you’re the Nigel hogging all the canapés.

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October 17, 2014

Week 4 training

sylvia Mind Body Spirit egg freezing, endo, endoactive, endometriosis, fitness, goals, healthy eating, hormones, kayla itsines, mind body spirit, motivation, the pill, training 0 Comments

Sooo I’m up to Week 4 of @kayla_itsines training guide. Hard to tell if I look that different and no idea if I’ve lost weight because I don’t weigh myself. Chucked my scales out 2 years ago. Don’t really care about a number on a screen (anymore. I did when I was younger and it was dangerously addictive, damaging and incredibly consuming). But I feel so much stronger, healthier, energised and most amazingly – I seem to be in Endo pain remission.

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October 1, 2014

Syl chats with Julia Gillard

sylvia Uncategorized activism, advocacy, awareness, endo, endoactive, endometriosis, feminism, goals, julia gillard, mamamia, media, motivation 0 Comments

Today, Mum and I attended a special event at the Mamamia office. (Doing our best to rep EndoActive and our cause wherever we can) The Hon. Julia Gillard came in for a Q and A session about her recently released autobiography, ‘My Story’ and to answer questions from Mamamia readers. She was interviewed by Mamamia’s Editor in Chief – Jamila Rizvi, while a select few (about 40 staff and us) got to sit very close and watch. What a privilege. She spoke so candidly and honestly about a whole range of topics; her life before, during and after being Prime Minister, gender issues, education, policies & politics, that WONDERFUL misogyny speech (which I remember watching live during Question Time while I was interning at Mamamia, on the telly with a room full of women standing, cheering and applauding – it was beyond amazing) and a whole bunch of other stuff.

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