January 8, 2015

EndoActive has gone troppo yo.

sylvia Media, Uncategorized activism, advocacy, awareness, change.org, endo, endoactive, endometriosis, feminism, genea, media 3 Comments

  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.

I can remember Mum throwing this enormous idea around one morning over breakfast while we were sitting at the kitchen table. As much as Dad and I were loving her unbridled enthusiasm, we were both thinking ‘yeah right.’ Cynical I know. Let me tell you that when my Mum has an idea, no matter how wild or seemingly unachievable, you can bet she’ll make it happen. Our petition is a wonderful example of that. People looked at her like she was crazy. (She is! But in the best way.) But today I can announce that not only is this conference going ahead but that Sydney University will be hosting it in their brand new Charles Perkins Centre. We also have the support of Jillian Skinner – the NSW Minister for Health and of Genea – my fertility clinic where I recently had my eggs frozen. Check out my Egg Freezing Blog up the top to read more about that.

One thing that Mum and I (and all of you I’m sure) have noticed is the huge gap in early education, detection, diagnosis and awareness about Endo. This is so important, particularly for teenage girls who are suffering at such a young age but possibly thinking their pain is either ‘normal’ or being told the pain is ‘all in their heads’. This is bullshit!! The idea behind filming and interviewing young girls with Endo is to show how the problems begin regarding abnormal and painful periods, where the gaps in education are, what these girls are or should I say AREN’T being taught at school and at home and highlighting their experience as a teen or 20 something living with Endo / PCOS / Adenomyosis and other gynaecological conditions. My parents are both film makers and have their own production company, which you can check out here, so of course as they accompanied me on my ‘adventure’ with Endo (the HSC made me despise the word ‘journey’) and we learned what little information is out there, educating through film is the first thing they thought of. Fortunately we’ve had a great bunch of girls come forward, eager to share their story in order to raise awareness and promote better education. Unfortunately, these courageous young girls are dealing with such an awful lot. They’re in pain, undergoing multiple surgeries, at some point they’ve each been mistreated by doctors, specialists or treated like drug seeking junkies in ER, some are unable to socialise, study, work or even go to school. But what these girls all have in common is their strong will to fight, put themselves out there and make a difference. How amazing is that?! This is exactly the attitude we need surrounding women’s health and women’s issues. It takes BALLS, or rather, OVARIES to ‘come out’. It takes even bigger ones to speak publicly about the personal things that need to be spoken about – PERIODS, PAIN, BLEEDING, WOMEN’S HEALTH – but that society encourages us keep hush hush.

A few days ago we had the A Current Affair crew come and interview Mum and I up here in Noosa for an awareness story on Endo, likely to air next week. This is fantastic news – it’s about time Endo and PERIODS are talked about on national TV in a collaborative effort. I was so nervous about saying the wrong thing to camera and misrepresenting the women and girls living with Endo that I reached out to you and to our EndoActive supporters on Facebook – a combined total of 4186. 15 minutes before the crew arrived (why I didn’t think of this the night before still baffles me) I asked you to tell me some of the things you’d like me to express about what it’s like having Endo. I asked you what you’d like to see change and what you’d like the public to know. I thought I’d be lucky to glance at a few before the crew arrived but your posts kept coming thick and fast. Every few seconds there were more. We read every single one.

Across the two Facebook pages, that post received over 180 comments and a reach of over 27,000 people! That’s 27,000 people reading about Endo and about how it makes you all feel – incredible. This is the benefit of having our pages as public forums rather than closed discussion groups – your voices can travel.The ACA crew couldn’t believe the response we got from you – they were blown away. What really struck me was the similarity across the majority of your responses – that you feel misunderstood, unvalidated, not believed, frustrated. You helped me to convey the experience of girls with Endo to camera. For some reason I just blank when I’m asked how Endo makes me feel but having all your responses in my mind, I was able to express what we all feel. (I still stumbled A LOT!)

These are some of the things you wrote to me.

Imogen   “GP’s need to be more aware of how common endo is and not write off our symptoms to something else…I was shut down so brutally about my symptoms (told it was all in my head) that it took me another 8 months of agony to seek a second opinion.”

Hailey   “Doctors need to treat us as people with a real condition, rather than neurotic females wanting more medication!”

Jess   “My pain is excruciating and I am unable to literally move an inch! It’s more than ‘just cramps’. Its all your insides sticking together and every time u move it’s like ripping apart inch by inch!”

Rebecca   “Pregnancy does not cure endo, a hysterectomy will not help… it is not something that only older women get – pre teens, teens & young women suffer just as badly.”

Renee   “I hate being told ‘but you don’t look sick’ “

Amy   “I think we just want the public to empathise that this is real and there is nothing being done about it. It affects us as workers, mothers, partners, friends and being apart of normal society.”

Natalie   “That the amount of pain relieving medication required to take the “edge off” the pain is ridiculous and surely harmful to your body after months and years of constant use.That employers don’t always understand if you need to take time off work.”

Natalie   “I wish every young girl was told that painful periods are NOT normal and that endo exists so they don’t just put up with it, face infertility later in life or have to endure many painful surgeries.”

Jess   “That we are not just attention seeking pain killer drug addicts.”

Caity   “Some of the lesser known symptoms: fatigue, depression, stomach issues etc. The suicide rates of girls dealing with it.”

Man that made my heart hurt. That last comment is something that we want to find out. I don’t know how many but I know for a fact that there are girls dying from Endo, as awful as that is to think about it’s true and the public has no idea. Perhaps Endo would receive more attention and funding if people knew this. Right now I’m looking at the thousands of people dressed in hot pink at the SCG on the telly in support of breast cancer, which is bittersweet. It’s fabulous how exponentially breast cancer awareness has grown and how much funding and beautiful care packages and support they have. I just wish Endo had the same kind of support seeing as there are 1 IN 10 OF US LIVING WITH IT! And that is a conservative figure apparently.

The image of all of you tapping away at your keyboards, giving me advice the second I needed it made me feel like you were all there with me during the interview – feeding me lines when I couldn’t express myself. It gave me a huge boost so thank you! ACA will let us know when the segment will air so stay tuned to the Facebook pages for an update on when that will be.

I’m off for a dip in the ocean. Time to get WET! I suggest you do the same if you can, particularly if you’re in pain. A warm bath works like a dream. I love the feeling of being weightless in the water with that pressure just being lifted off your body. Mmm hmmm.

Peace out you lot. Slip Slop Slap & party safe  x