From hospital gown to graduation gown – I didn’t expect to find myself at the Breast Oncology clinic an hour before my ceremony.
Last Thursday night I was standing in the shower thinking about breast cancer – as you do. It occurred to me that breast cancer runs in both sides of my family and yet I’ve never had a mammogram and have no idea how to check my breasts. So, while the hot water ran over my body I decided to give it a go. Of course I didn’t what I was doing or what to look for but when I inched my fingertips over to the edge of my breast – close to my rib cage – I yelped. OW!! That really hurt. I checked the other side. YOWZER! Same thing. That’s weird.. I thought.
The next day I went to my GP who ordered me to have blood tests in case I had glandular fever. I had the tests the following morning and was told to wait a few days for the results. In the mean time, my upper side boobs were still really sore and I could feel the pain increasing by the day.
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.
EndoActive’s Co-founder, Syl Freedman has been named as one of 8 Young Leaders in the 100 Women of Influence Awards, sponsored by the Australian Financial Review and Westpac. The awards are designed to increase the visibility of women’s leadership and highlight the important contribution women make in creating a bold and diverse future for Australia.
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.
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.