August 18, 2016

Colposcopy #3

sylvia Uncategorized cancer scare, cervical cancer, checkup, colposcopy, endo, endometriosis, gynaecologist, gynecologist, health, hospital, HPV, obgyn, pap smear, pap test, pre-cancer, pre-cancer results, Royal Prince Alfred, RPA, test results 1 Comment

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.

18 August
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.

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August 12, 2016

Syl speaks at Health Informatics Conference in Melbourne

sylvia Uncategorized activism, advocacy, awareness, change.org, conference, endo, endoactive, endometriosis, fertility, health, health informatics, health informatics conference, HIC, HISA, melbourne 0 Comments

Hey EndoActivists,
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.

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August 5, 2016

Bayer collaborates with Evotec for new Endometriosis treatment

sylvia Uncategorized activism, awareness, bayer, drug, endo, endoactive, endoactiveawareness, endometriosis, evotec, new drug, pharmaceutical, treatment 0 Comments

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.

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