Although this article in Latte was from July 2015 – it was a great awareness piece on endometriosis. A huge thanks to Business Chicks for featuring EndoActive and providing important health information about endo.
Click through to read the full article.
This morning I am FURIOUS!! Absolutely disgusted with Dr Michael Gannon – President of the AMA – for his callous, disgraceful disregard for women who suspect their unborn baby is in trouble.
Perpetuating the dangerous myth, unsupported by science,that having a cold drink will “wake the baby up” is like saying “getting pregnant will cure endometriosis” and all of us should take a stand and call him out. You can email him with your thoughts: email@example.com.
Here I am talking about Endometriosis to a packed auditorium of hundreds of people a few weeks ago. I was in Melbourne speaking at HISA’s Health Informatics Conference as a patient advocate who has used social media to create an online community of wonderful women and raise awareness of Endometriosis.
It wasn’t long ago that I was slumped on the couch day after day in chronic pain, miserable as hell, consumed by sadness and anxiety, with no hope for the future. Becoming an activist and a patient advocate has completely turned my life around. I never ever ever would’ve imagined that the disease that was once destroying my life would now be my Ikigai – a Japanese word meaning ‘reason for being’ or reason to get up in the morning.
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!
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…)
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…
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.
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.
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.
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…
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.