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.
FYI not the boys from the pub in this story but they still get to hear me bang on about Endo
It was just your average Friday night. I ventured out to a pub in Chippendale to have a coupla with me mates after a mental week at EndoActive HQ. It was there that I wound up talking to a bunch of dudes about periods. Oh yes.
The days surrounding the official launch of Visanne were frantic with media and publicity stuff going on while Mum and I tried to juggle conference organising with writing articles and prepping ourselves to talk to camera. Funnily enough, we were not prepared in slightest for the public reaction to the release of Visanne. For us, the news that Bayer had said yes came months ago and we didn’t wake up to the fact that March 3rd would be so significant. Being the total rookies that we are, we didn’t prepare anything and it wasn’t until the day before that we realised what a big deal it would be.
We spent all day Tuesday co-writing an article for the Guardian. Then, they told us they wanted to film us reading our article to camera instead. We stayed up till midnight re-working our article into a script and sticky-taping our lines onto cue cards for the morning. It was such a mad rush but 2 days later, this video was released online.
(I can’t help cringing the whole way through that thing. I look like a baby boy deer caught in a headlight. But vanity and hypercriticism aside, I’m proud of the overall message.) So as I was walking through the pub courtyard, this guy stopped me and said, “Hey aren’t you the girl from that video on the net? It was about En…..do….metriosis?” I was excruciatingly embarrassed.
Today I had my first grown-up job interview. (Years of cruising into bar jobs aren’t quite the same). But just six months ago I was miserably contemplating a life of unemployment. I had started to listen to the shitty little voices in my head, needling away, telling me that nobody would want me because I had Endo. I couldn’t see past my next doctor appointment. I knew that I had a strong work ethic, a mind that craved stimulation and good values to offer, but I was losing confidence.
Going public about having Endo was a big decision and one which I knew could have ramifications for me in the future. I wasn’t sure if ‘outing myself’ was the smartest move if I wanted a career. Would anyone hire me if they knew I had a chronic illness? I had the opportunity to remain anonymous. Instead, I chose to put myself out there – full name, full disclosure, total transparency. Despite the perceived risks, to me it was a no-brainer. How could I express the importance of public awareness about endo and encourage others to do the same while hiding my identity? It would be a total contradiction.
I am comin’ at you live from beneath the Pandanus. Although I’m currently in Noosa on holidays with my family, EndoActive HQ has traveled with us and is fully functioning in the tropics. We’ve literally gone troppo. So much exciting news to tell you so be sure to read to the bottom ok! First things first. Happy new year err’body. I hope this finds you well. It’s been so hectic up here organising the inaugural EndoActive consumer conference (eeee!!!) and getting in touch with lots of brave, enthusiastic EndoActive supporters from Brisbane & the Sunshine Coast who we’re going to interview and film while we’re up here. On top of that, A Current Affair popped in to see us. They were lovely. We ate Tim Tams together! I’ll tell you about that further down.
For those of you who aren’t aware, my Mum and I started EndoActive Australia & NZ a few months ago as a result of the publicity we were receiving after our petition on change.org went viral and received a whopping 74,500 signatures. You can check it out here. Now we are a non-profit, legally incorporated association which feels FANTASTIC and sounds very grown up and legit. We are so proud to have started this little thing from our living room and watched it grow and grow. Our mission is to promote education, awareness and activism about Endo as much as we can. We’ve already achieved a lot with the help of our fantastic supporters and have lots of exciting things in the pipeline. Mum has ideas coming out of her eyeballs, even while she’s asleep! She is an absolute powerhouse and I’m learning a lot. Together, we make a great team. We are currently planning the first ever consumer conference on Endo to be held in Sydney in the first half of 2015.
Here’s a video of me doing my final round of hormone injections. I developed a ‘bang bang bang’ method towards the end of my egg freezing process which basically means I lock and load up all the syringes with the solutions and medicines, replace the caps on the needles to ensure they’re 100% sterile, lay them out on the bathroom counter then BANG BANG BANG shoot em up one after the other. That may seem a little extreme to some and even warranted a “Oh Sylvie, NO!” from my mum but I didn’t do this for shock value I can assure you. I actually found this method safer for me for a number of reasons. Keep reading for more details on Day 11…
I took this photo while I was perving on all the sparkly spangly things at my photo shoot for Cosmo on October 14. Sadly none of them were meant for me so I just drooled and fantasised about being a modern bridal-wear model dripping in sequins and fluffed with fur coats while I sat on the couch waiting until it was my go. (There was a real model before me which pissed me off royally because I knew I’d look like even more of a dick trying incredibly hard to look totally natural. Bitch.)
Time for makeup. I was very excited to see what I’d be styled in and how many different outfits I’d get to try which is hilarious in hindsight because I was given a plain white singlet to throw on for a single head-shot. What a dick. Thinking I was gonna get some sort of fashion spread like I was Kate bloody Moss or something HA! I’m still baffled by my unbridled self-indulgence in that moment – what on earth was I thinking? As I had one squinty eye on the model pose pose posing while my hot pink lippy was applied and my eyebrows were coloured in, I watched my glossy 6-page-spread vision droop and deflate like a sad penis on a cold day.
You can see in this photo how swollen my belly is getting from all these injections and growing follicles…
I cannot even count the number of ex-boyfriends and phallic symbols or just blatant dicks in my dreams last night. (they came in many forms; dickheads, several dildos, people being dicks, actual dicks) Jesus Christ! (he isn’t a dick and did not appear in my dream) I actually woke up feeling a little embarrassed to be sleeping with myself like “woahh chill out girl!” When I got a glimpse of my reflection in my bedroom mirror my face was priceless – like I’d just been caught red-handed, mid-act doing something naughty. Except I’d been caught by myself. And it was just a dream… But dreams are rarely literal and I know that with a tiny bit of unpacking, it will be glaringly obvious what all the phallic stuff was for. Even as I type this it’s just so clear… hormones, the uncomfortable internal ultrasounds at Genea every few days with that cold, lubed up, phallic probe, creating potential new life in the most unnatural way possible – without a penis or sperm, all the “partner not applicable” sections I’ve had to scribble over forms, doing a (typically) couples thing on my own as a single 23 year old, making 50% of a baby in this clinical, unsexy environment, and yes sure my sex drive is in over drive … dozens of reasons.
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.