August 18, 2016

Colposcopy #3

sylvia Uncategorized cancer scare, cervical cancer, checkup, colposcopy, endo, endometriosis, gynaecologist, gynecologist, health, hospital, HPV, obgyn, pap smear, pap test, pre-cancer, pre-cancer results, Royal Prince Alfred, RPA, test results 1 Comment

5 September UPDATE

Results: ‘possible low-grade changes’. This essentially means my body is still fighting HPV but that it is gradually healing. Improved results from last time where I had definite low-grade changes. Good news says my doctor. I’ll have another colposcopy in 6 – 9 months.

18 August
Had a quick trip to RPA for my 3rd colposcopy. This is something I’ve had to do a few times since the pre-cervical cancer scare I had last year.

A colposcopy is kind of like a ‘next level’ pap test. It’s the same deal with the whole scooch down the table, vagina out, feet in the stirrups, stare at the ceiling, drop your knees to the side all while trying to have the most chilled, casual conversation with your gynaecologist about life and the weather and how badly we’re doing in the Olympics while your doctor’s face is 2 inches away from your vaginal cavity.

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August 12, 2016

Syl speaks at Health Informatics Conference in Melbourne

sylvia Uncategorized activism, advocacy, awareness, change.org, conference, endo, endoactive, endometriosis, fertility, health, health informatics, health informatics conference, HIC, HISA, melbourne 0 Comments

Hey EndoActivists,
Here I am talking about Endometriosis to a packed auditorium of hundreds of people a few weeks ago. I was in Melbourne speaking at HISA’s Health Informatics Conference as a patient advocate who has used social media to create an online community of wonderful women and raise awareness of Endometriosis.

It wasn’t long ago that I was slumped on the couch day after day in chronic pain, miserable as hell, consumed by sadness and anxiety, with no hope for the future. Becoming an activist and a patient advocate has completely turned my life around. I never ever ever would’ve imagined that the disease that was once destroying my life would now be my Ikigai – a Japanese word meaning ‘reason for being’ or reason to get up in the morning.

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August 5, 2016

Bayer collaborates with Evotec for new Endometriosis treatment

sylvia Uncategorized activism, awareness, bayer, drug, endo, endoactive, endoactiveawareness, endometriosis, evotec, new drug, pharmaceutical, treatment 0 Comments

EXCITING NEWS FOR ENDOMETRIOSIS PATIENTS AND ACTIVISTS!

Yesterday I got notice of a collaboration between pharmaceutical company Bayer and Evotec regarding treatment of Endo.

With not much other information it’s easy to be cynical of this news. Of course this treatment won’t be a cure. Of course both parties will be interested in making a profit – such is the way of the world. And that’s ok.

I’m not sure whether this treatment option will be helpful or not. Let’s hope that it is.

BUT – I’m so so excited by this news because it is a sign that Endo is being recognised as a serious health issue costing billions of dollars in lost productivity a year. It shows that big pharma is willing to put money into Endo and without their financial support and investment, no progress will be made. As a close friend of our told me on the phone this morning – researchers and scientists can beaver away doing their wonderful work all their lives but without funding, that research and science will stay in the universities and the labs. That work will stay in silos.

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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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April 12, 2016

Lack of awareness and information on Endometriosis #endoactiveawareness

sylvia Uncategorized awareness, endo, endoactive, endoactiveawareness, endometriosis, fertility, information, symptoms 0 Comments

Hey EndoActivists, here’s me talking a bit more about the lack of awareness and information on Endometriosis as part of our ‪#‎endoactiveawareness‬ campaign.

Over the last 3 weeks I’ve been making videos for a social media campaign which is part of my Masters in Health Communication degree at University of Sydney. I’m loving this degree so much! I never would have chosen it if it weren’t for my struggle with Endometriosis and starting EndoActive but our EndoActive community has taken me on a path into women’s health and has ignited a real passion I didn’t have before connecting with all of you!

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March 30, 2016

Endometriosis Awareness Month #endoactiveawareness

sylvia Uncategorized awareness, endo, endoactive, endoactiveawareness, endometriosis 0 Comments

Hey EndoActivists

I’m currently studying my Masters in Health Communication at University of Sydney.

For one of my subjects – Social Media Communication – (yes that’s right you can study social media and yes we do discuss the theory of ‘selfies’) we’ve been asked to run a real life social media campaign. OBVIOUSLY I chose to do an awareness campaign on Endometriosis.

The campaign is called ‪#‎endoactiveawareness‬.

If you’d like to get involved, start a conversation, share a photo, your story, advice, link to an article, blog or video… anything you want about Endo – on Instagram or Twitter – and use the hashtag #endoactiveawareness

Why not right here on our Facebook? My tutor thought it would be more of a challenge to use social media channels we don’t use as regularly hence why I’ve chosen Vimeo, Twitter and Instagram. But by all means, share whatever you like, wherever you like. Endo Awareness is SO IMPORTANT! So fire away.

GET INVOLVED! POST STUFF! USE THE HASHTAG!

Excuse the backwards text in the video – haven’t mastered the anti-mirror image thing yet 🙂

Syl x

March 2, 2016

Dear 21 year old Syl, You’re not going insane. You have Endometriosis.

sylvia Uncategorized awareness, endo, endometriosis, flare up, mamamia, pain, proud to be out, symptoms, work 6 Comments

Byron Bay 2012. So happy. Perfect day. 2 hours after this photo was taken I was in agony, bawling my eyes out in the bath tub, cancelling dinner reservations and wondering if I needed to go to hospital… all because of Endometriosis. But at that time, I had no idea. I often think now about the things I’d say to my 21 year old self.

At 21 I was studying at UTS, interning at Mamamia, waitressing at a restaurant (both jobs that I loved) and flatting in Bondi. I was having a lot of fun but also feeling extremely unwell. Despite what my life looked like through the filtered lens of social media, offline I was a very sick, anxious girl. I was always tired and always in pain.

The pain came in a variety of flavours: pelvic pain, period pain, back, hip, glute, abdominal, migraine… and searing, stabbing, grinding, ripping Endo pain. But back then I didn’t have the right words to describe it. I didn’t have a name for it. I’d never even heard of it. It would be another 6 months before I was diagnosed with Endometriosis.

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February 16, 2016

Colposcopy No. 2 Results

sylvia Uncategorized activism, advocacy, awareness, colposcopy, endo, endometriosis, hormones, symptoms 0 Comments

Colposcopy No. 2 … sounds like a lucrative perfume empire doesn’t it? I should really hit up Coco Chanel’s people and see if they’d like to endorse it. Sorry this update has taken me a while to publish – life has been extremely busy with social media buzz from that misleading CNN article, family health stuff (prefer when it’s me that’s sick than people in my family!) + new job. So my apologies for the delay!

Anyways on January 18 this year I went and had my follow-up Colposcopy No. 2 – 6 months after Colposcopy No.1. Last time I had the procedure done in hospital under anaesthetic in case there were any abnormal cells that needing lasering off. CIN2 cells were found on my cervix during that procedure which meant I had ‘pre-cancerous’ cells developing.

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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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