EXCITING NEWS! EndoActive has been accepted to present some of our work at the World Congress on Endometriosis in Vancouver!
This is another HUGE milestone for us. Time for a little story…
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: firstname.lastname@example.org.
5 September UPDATE
Results: ‘possible low-grade changes’. This essentially means my body is still fighting HPV but that it is gradually healing. Improved results from last time where I had definite low-grade changes. Good news says my doctor. I’ll have another colposcopy in 6 – 9 months.
Had a quick trip to RPA for my 3rd colposcopy. This is something I’ve had to do a few times since the pre-cervical cancer scare I had last year.
A colposcopy is kind of like a ‘next level’ pap test. It’s the same deal with the whole scooch down the table, vagina out, feet in the stirrups, stare at the ceiling, drop your knees to the side all while trying to have the most chilled, casual conversation with your gynaecologist about life and the weather and how badly we’re doing in the Olympics while your doctor’s face is 2 inches away from your vaginal cavity.
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.
EXCITING NEWS FOR ENDOMETRIOSIS PATIENTS AND ACTIVISTS!
Yesterday I got notice of a collaboration between pharmaceutical company Bayer and Evotec regarding treatment of Endo.
With not much other information it’s easy to be cynical of this news. Of course this treatment won’t be a cure. Of course both parties will be interested in making a profit – such is the way of the world. And that’s ok.
I’m not sure whether this treatment option will be helpful or not. Let’s hope that it is.
BUT – I’m so so excited by this news because it is a sign that Endo is being recognised as a serious health issue costing billions of dollars in lost productivity a year. It shows that big pharma is willing to put money into Endo and without their financial support and investment, no progress will be made. As a close friend of our told me on the phone this morning – researchers and scientists can beaver away doing their wonderful work all their lives but without funding, that research and science will stay in the universities and the labs. That work will stay in silos.
Hey guys. Today I want to share with you my beliefs, my dreams for EndoActive and our story – why we’re here. It really is an incredible one and it involves all of you, so please, please read to the bottom. <3
My name is Syl Freedman, I’m 25 and I have Endometriosis. We call it Endo.
My Mum, Lesley, and I started EndoActive in August 2014 after campaigning to have a medication used to treat Endo available here in Australia. We got 75,000 signatures on our online petition (thanks to many of you for signing!!) and amazingly, we were successful. Visanne was released in Australia in March 2015.
It has helped many women, myself included, to finally live a life free of pain and most importantly, provided another treatment option for Endo.
After achieving the impossible, we had a fire in our bellies and felt determined to keep going.
In 2014 I was incredibly sick with Endo and had been for years. At that time I
✖️Couldn’t work due to pain
✖️Barely made it to uni
✖️2nd laparoscopy with shocking recovery
✖️Awful pain and fatigue all the time
✖️Miserable. Flat. Didn’t see a future.
✖️Cried A LOT
If you told me then that in 18 months
✅I’d be pain free, learned how to self-manage my Endo, healthy, full of energy
✅Legalised a drug in Australia to treat Endo (Visanne)
✅Started a change.org petition with 75,000 signatures
✅Built an online community of nearly 8000 incredible people raising awareness of Endo together
✅Froze my eggs
✅Held a conference on Endometriosis at University of Sydney
✅Started my Masters in Health Communication at Sydney University
I would never ever ever ever have believed you in a million years. Ever.
For those of you who are struggling to cope, living in pain, can’t see a way out – I have been there!!
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!