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

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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December 16, 2015

Cosmo Women of the Year Awards: All the pics

sylvia Media, Uncategorized activism, advocacy, awareness, cosmo, cosmopolitan, endo, endoactive, endometriosis, julia gillard, kayla itsines, women of the year awards 5 Comments

Felt very humbled to be nominated alongside this girl – Katrina Keshishian, Cosmo’s Game changer of the year winner. Katrina is a Campaigner for rape victim compensation – what a legend. Huge inspiration that you can go through hell and come out the other side strong, fearless and courageous. Congratulations Katrina ! Xx

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October 15, 2015

Endo flare-up and Random bruising

sylvia Uncategorized activism, advocacy, awareness, emotions, endo, endoactive, endometriosis, flare up, hormones, medication, pain, random bruisins, symptoms, Visanne 8 Comments

Hey gang. So right now what’s happening is that I’ve had 3 or 4 days of Endo pain in the past 2 weeks and I’ve noticed a whole bunch of reasonably gnarly bruises that seem to randomly appear in various places on my body without previous injury. That’s been happening for about 3 or 4 weeks. I’m not linking these 2 things together. But it’s not unusual for my body to fall apart in multiple places from seemingly unrelated things simultaneously.
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September 26, 2015

The BEST Endometriosis DVD is here.

sylvia Media, Uncategorized activism, advocacy, awareness, dvd, endo, endoactive, endoactive conference, endometriosis, fertility, hormones, sydney uni, symptoms 0 Comments

EndoActive’s DVD on Endometriosis is now available from endoactive.org.au
SO ORDER YOUR COPY TODAY!

I so wish I had a resource like this available to me when I was in the throes of despair – not knowing who to turn to for advice after I’d had a million doctor and specialist appointments with no clear answers as to why I was still in pain after 2 surgeries and what I could do to help myself…

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September 24, 2015

Cosmo Women of the Year Awards

sylvia Uncategorized activism, advocacy, awareness, cosmopolitan, cosmso, endo, endoactive, endometriosis, feminism, julia gillard, proud to be out, women of the year awards 0 Comments

Hellooo people of the internet & fellow EndoActivists! Someway, somehow I am a finalist for The Cosmo Women of the Year Awards. I’m up against 4 other women in the ‘Game Changer of the Year’ category – A huge surprise and incredible honour. I can’t actually believe it. To think that around this time a year ago I was lying on the couch in pain with my little cat Pepi snuggled up next to me, unable to do very much is… I don’t even know how to describe it. It was an exhilarating time because of the excitement from our petition to Bayer going viral but right before that happened, life for me was miserable, unexciting and I was unhappy. Endo was causing havoc in my life.

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August 14, 2015

Visanne Day 40

sylvia Uncategorized awareness, emotions, endo, endoactive, endometriosis, exercise, fertility, healthy eating, hormones, medication, symptoms, Tags: training, Visanne 15 Comments

I AM GROWING MY HAIR OUT PEOPLE! Look how long it’s getting! I can actually tuck my hair behind my ears again. All seven strands of hair. And it’s wild. However I have of course captured myself at the best possible angle in this photo and 99% of the time my head actually looks so stupid. Underneath those thin strands of hair is a whole lot of mousey fuzz. I knew this time would come, however the awkwardness of growing out an undercut was not something I contemplated until the day after my birthday last year once I’d sobered up and realised that I had indeed shaved off most of my hair. Good times.

So I have now been taking Visanne for 40 days. This is month 2. I have to say that overall the transition has been really smooth! Looking back on my previous post where I diarised where my health was at on Day 1, the two issues I was having were predominantly SLEEP & ALLERGIES.

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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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