endometriosis

This is why I’m out and proud

IMG_3035Today 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.

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EndoActive has gone troppo yo.

IMG_3016  IMG_3012I 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.

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46 days since egg freezing

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It’s been 4 weeks since my last bog entry and 46 days since egg freezing. Sorry it’s been so long between drinks! Half that time I spent still recovering and the other half I had to bury my head in the books and finish my last uni assignment without distraction. Today I’m feeling 1000 times better than the last time I wrote, which is why it’s so important to diarise the bad days in life so you can see how far you’ve come. I’m not completely back to my old self but by tracking my progress I know that I’m getting stronger and fitter every day. I’m going to give you a long list of everything I’ve felt over the past 46 days since my egg retrieval so you can get a real idea of my experience – which of course will likely not be the same as your experience because we’re all so wonderfully different. It’s been a long a difficult recovery so it’s a pretty extensive list but I’m sharing it because it’s something I would’ve liked to read coming from another girl with endo before I embarked on this wild voyage. Reading another person’s experience would not have made my decision for me but it would have prepared me for the things you aren’t warned about. First of all, I hope I didn’t scare anybody off egg freezing with the last description of how I was feeling…

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Egg retrieval recovery Day 18

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I am literally forcing myself to type this right now because I feel so fucking weird that I know I need to document it while I’m in the moment. Days of feeling like this are awful but you tend to ride them out then forget about them. I haven’t blogged since my egg retrieval because I’ve literally been too tired to type. Here’s what I managed to jot down in my notes on my iphone when I tried really hard to concentrate on what I was feeling:

Sort of feel like there’s two of me – one inside the other but they’re disconnected.
Pins and needs in left hand.
Slight falling sensation or that my inner body is much further away from my outer skin.
Inner eyeballs are further away from my real eyes. Everything feels far away.
I feel weak within in my body and not grounded or connected.
I feel lost and small inside myself, not outside of myself as people say sometimes.
Loud Noises are too loud too much
I feel overwhelmed by looking at my screen filled with emails or anything that requires too much thinking and processing.
My vision starts to blur and warp.
Left hand getting more numb.

Reading that back is very scary and creepy.

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Day 11 egg freezing

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…

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My photo shoot with Cosmo

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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.

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Day 7 egg freezing

Day 7 Genea

I don’t what I was thinking trying to G myself up to go out last night – I was in absolutely no fit state. Not even close. I was so tired and nauseous I could barely speak. I was like that all day but typical Syl, I seriously believed I’d simply snap out of it just in time. Regardless of what condition I’m in, I tend to have this vision of myself making a miraculous recovery where I look at the clock when it’s time to get ready (for going out, for uni assignment, for whatever it is) and leap out of bed still wearing my trackies and hoodie but suddenly feeling fantastic. Then I do a kind of ‘Genie in the bottle from Aladdin’ twirl which magically sprinkles on my makeup, poofs up and slicks back my hair, kits me out head to toe and sends me flying out the door in 2 seconds. It’s amazing. And delusional. Total denial.

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Day 6 egg freezing

Day 6 belly

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.

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