activism

Endo flare-up and Random bruising

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Hey gang. So right now what’s happening is that I’ve had 3 or 4 days of Endo pain in the past 2 weeks and I’ve noticed a whole bunch of reasonably gnarly bruises that seem to randomly appear in various places on my body without previous injury. That’s been happening for about 3 or 4 weeks. I’m not linking these 2 things together. But it’s not unusual for my body to fall apart in multiple places from seemingly unrelated things simultaneously.
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The BEST Endometriosis DVD is here.

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…

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Cosmo Women of the Year Awards

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Hellooo people of the internet & fellow EndoActivists! Someway, somehow I am a finalist for The Cosmo Women of the Year Awards. I’m up against 4 other women in the ‘Game Changer of the Year’ category – A huge surprise and incredible honour. I can’t actually believe it. To think that around this time a year ago I was lying on the couch in pain with my little cat Pepi snuggled up next to me, unable to do very much is… I don’t even know how to describe it. It was an exhilarating time because of the excitement from our petition to Bayer going viral but right before that happened, life for me was miserable, unexciting and I was unhappy. Endo was causing havoc in my life.

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Pre-cancer results. What now?

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Taken from those wild wild storms a few months ago – yes that is FOAM not sand.

Side note: I’m eating porridge (gluten free obvs) with coconut milk, cinnamon spiced apple and  smooshed banana. IT IS SO DAMN GOOD!

So the last time I wrote on here I’d just had a pre cervical cancer scare – a week after the EndoActive conference. Crikey what a come down! I really was in a glass cage of emotion. Since then I have been back to see my surgeon for a follow-up appointment on June 19 to discuss my results. As I said in my last post, my colposcopy showed pre-cancerous cells on my cervix. It was really scary at the time and I was worried. It just came as such a shock because I always expect investigative medical procedures (including both my surgeries for endo) to come back negative and for all the fuss to be for nothing. Yet they always seem to wind up quite serious! The good news about this one was that by the time my results came back, I’d already had the procedure to laser off the abnormal cells and there was nothing left to do. Despite the initial shock I can honestly say that after my follow-up appointment I’m feeling surprisingly at ease and really not at all concerned.

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Colposcopy Results. Big scare. Good lesson.

Don’t really have a cool picture to go with ‘Colposcopy Results’. Ideally I’d be reporting about our amazing EndoActive Conference which took place last Saturday, May 16 but I’ve spent most of the week recovering and writing thank you emails and all of a sudden this has come first. If you’re reading this, please read to the end! Very, very important.

Just to recap – a few weeks ago my GP referred me back to my surgeon (who has performed both my laparoscopies for Endo and done a wonderful job) after my 3rd abnormal Pap test. Apparently it’s quite common to have abnormal readings of Pap test which is why doctors wait until you’ve had 3 in a row until they take the next step. All my results showed LOW Grade abnormality (even with the ThinPrep test which I paid a bit extra for to get a more accurate reading). Nevertheless, my surgeon decided to perform the Colposcopy in theatre so that if there was anything to be removed he could do it on the spot.

As it turned out, there were was. He lasered off some abnormal cells and sent a biopsy to pathology. To my relief, I woke up in very little pain and had a nice and easy recovery without the need for pain killers. First time that has ever happened!! I put that down to correct pain relief before going under anesthetic as I had warned the anesthetist that I usually have extreme pain after any procedure. The only thing I experienced during the week was fatigue, bloating and constipation. Movicol really helps! (2 sachets at a time mixed with water and up to 8 a day if things are really bad)

So today my results were in. Quite alarmingly, my surgeon told me that all my Pap test readings were incorrect and that the changes on my cervix were HIGH grade and not low grade as the previous tests had shown… slightly concerning that this wasn’t picked up over the past 12 months but there you go. Those high grade changes and the biopsy results indicated that the cells were also pre-cancerous.

It’s scary even writing those words and I did have a big cry after I absorbed that information but I’m trying to jump straight to the part which everyone else is saying which is “it isn’t cancer and it’s just good news because they’ve got it early”. That’s very true. It is scary to know that it could’ve gone another way but now that it’s been brought to everyone’s attention, I have no doubt it’ll all be kept under control.

It would be really easy to gloss over this and say yes yes yes I’m extremely lucky and very privileged and thank god for modern medicine and my extra-cautious surgeon and it’s all taken care of so just move on and move forward. But honestly I am still scared. I’m human for fuck’s sake and I don’t care who you are, NOBODY wants to hear the word Cancer. Pre-cancer, almost cancer, not quite cancer – whatever. It’s scary and yes, I know I’m in good hands and it’s NOT cancer. But warranted or not, I’m worried. Lately it’s been in the back of my mind that people with Endo are at higher risk of developing certain types of cancer. That’s a fact I only found out myself a few months ago. It’s probably not that common but the risk is there. So yeah, it’s scary and I’m scared.

PHEW! Good to get that out of the way. I’ll find out more information in a follow-up appointment in a few weeks and will have a repeat colposcopy in 3 months to keep an eye on things. If there’s anything you can take away from this, KEEP UP WITH YOUR PAP TESTS!!!!! And if your readings are even slightly abnormal, keep a close eye on them, go back for check-ups and don’t ignore notifications from your doctor.

Back in high school I was one of the students who benefited from the recently introduced Cervical Cancer shot which was subsidised by the government. This was and is a great initiative, however one thing we weren’t told is that that inoculation only protects you from 3 out of roughly 80 or 90 different strands of HPV!!! This was news to me – all these years I thought I was only getting Pap tests to make sure I didn’t have chlamydia or herpes or AIDS or some other type of STD.

I had no idea I was still at risk of developing cervical cancer because after all why would I? I had the magic shot! WRONG! I found this information out for the first time from my surgeon on the day of my colposcopy. What a shock that was. As he said, I am probably one among thousands of other girls who are walking around with a false sense of security – thinking that we’re completely protected when in fact we are not. This was probably the most important thing that I learned from this experience and I’m quite shocked at how naive and ill-informed I’ve been this whole time. To think that there’s a whole generation of women and girls who think they don’t need Pap tests is truly terrifying.

I MUST TELL EVERYONE!! TOGETHER WE MUST TELL EVERYONE!!

Take something from my experience and please take care of yourself people.

Syl x

Chattin’ to men in suits about pelvic pain. At a cocktail party.

 

Me & Prof. Lorimer Moseley of University of South Australia

Me & Prof. Lorimer Moseley of University of South Australia

 

This is the second installment of Chattin’ to Blokes about shit you never thought you’d be chattin’ about in just a couple of weeks. It was once again an unexpected but uplifting experience. It reminded me of the night I wound up talking to a group of boys about period pain at the pub not long ago. You can read about that here.

On Tuesday my Mum / Co-founder of EndoActive and I flew to Melbourne for the launch of the Pelvic Pain Foundation of Australia. Before we arrived at the launch we were feeling quite out of place and a little nervous that we wouldn’t know anyone. Cocktail parties are for mingling and there’s only so many wines you can quietly inhale and only so many paintings you can point and nod at before someone notices that you’re the Nigel hogging all the canapés.

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Chattin’ with boys about period pain. At the pub.

FYI not the boys from the pub in this story but they still get to hear me bang on about Endo

It was just your average Friday night. I ventured out to a pub in Chippendale to have a coupla with me mates after a mental week at EndoActive HQ. It was there that I wound up talking to a bunch of dudes about periods. Oh yes.

The days surrounding the official launch of Visanne were frantic with media and publicity stuff going on while Mum and I tried to juggle conference organising with writing articles and prepping ourselves to talk to camera. Funnily enough, we were not prepared in slightest for the public reaction to the release of Visanne. For us, the news that Bayer had said yes came months ago and we didn’t wake up to the fact that March 3rd would be so significant. Being the total rookies that we are, we didn’t prepare anything and it wasn’t until the day before that we realised what a big deal it would be.

We spent all day Tuesday co-writing an article for the Guardian. Then, they told us they wanted to film us reading our article to camera instead. We stayed up till midnight re-working our article into a script and sticky-taping our lines onto cue cards for the morning. It was such a mad rush but 2 days later, this video was released online.

You can watch the awareness piece Mum & I did for The Guardian here.

(I can’t help cringing the whole way through that thing. I look like a baby boy deer caught in a headlight. But vanity and hypercriticism aside, I’m proud of the overall message.) So as I was walking through the pub courtyard, this guy stopped me and said, “Hey aren’t you the girl from that video on the net? It was about En…..do….metriosis?” I was excruciatingly embarrassed.

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This is why I’m out and proud

IMG_3035Today I had my first grown-up job interview. (Years of cruising into bar jobs aren’t quite the same). But just six months ago I was miserably contemplating a life of unemployment. I had started to listen to the shitty little voices in my head, needling away, telling me that nobody would want me because I had Endo. I couldn’t see past my next doctor appointment. I knew that I had a strong work ethic, a mind that craved stimulation and good values to offer, but I was losing confidence.

Going public about having Endo was a big decision and one which I knew could have ramifications for me in the future. I wasn’t sure if ‘outing myself’ was the smartest move if I wanted a career. Would anyone hire me if they knew I had a chronic illness? I had the opportunity to remain anonymous. Instead, I chose to put myself out there – full name, full disclosure, total transparency. Despite the perceived risks, to me it was a no-brainer. How could I express the importance of public awareness about endo and encourage others to do the same while hiding my identity? It would be a total contradiction.

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EndoActive has gone troppo yo.

IMG_3016  IMG_3012I 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.

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Syl chats with Julia Gillard

SylandJuliaToday, Mum and I attended a special event at the Mamamia office. (Doing our best to rep EndoActive and our cause wherever we can) The Hon. Julia Gillard came in for a Q and A session about her recently released autobiography, ‘My Story’ and to answer questions from Mamamia readers. She was interviewed by Mamamia’s Editor in Chief – Jamila Rizvi, while a select few (about 40 staff and us) got to sit very close and watch. What a privilege. She spoke so candidly and honestly about a whole range of topics; her life before, during and after being Prime Minister, gender issues, education, policies & politics, that WONDERFUL misogyny speech (which I remember watching live during Question Time while I was interning at Mamamia, on the telly with a room full of women standing, cheering and applauding – it was beyond amazing) and a whole bunch of other stuff.

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