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!
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 🙂
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.
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.
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.
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! (more…)
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
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. (more…)
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…
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.