endoactive

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

Breaking bad habits. It’s my 1 year post-op anniversary. This is what I’ve learned.

image1This time a year ago I was lying in a hospital bed up to my ears in painkillers recovering from my second laparoscopy while all my friends were sinking beers and playing two up. I was looking forward to reaching this ANZAC weekend and my 1 year post-op anniversary fighting fit – the way I’ve felt for months. But unfortunately I’ve had a relapse and lately my health has not been great. Getting the flu coincided with an Endo flare up, both of which have stuck with me off and on for the past 4 weeks. (To me this is a real indicator of the link between Endo and the Immune System.)

15 days of antibiotics has trashed my gut and my liver. 5 weeks without training has had a major impact on my energy. My muscles feel like they’ve been stitched together with a rope of crunchy glass. My body has been knocked around and its protective layer which I’ve spent months building up has been chipped away at. But unlike the last time I had an Endo relapse, this time I have backup. I have tools in my belt to help my rebuild. Everything I’ve been taught, everything I’ve learned, read, diarised and practiced over the past 8 months is going to help me gradually get back to where I was before. But getting to that point wasn’t easy. It meant growing up, being real and breaking some bad habits.

Happy one year anniversary Me.

Happy one year anniversary Me.

 

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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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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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Day 11 egg freezing

Here’s a video of me doing my final round of hormone injections. I developed a ‘bang bang bang’ method towards the end of my egg freezing process which basically means I lock and load up all the syringes with the solutions and medicines, replace the caps on the needles to ensure they’re 100% sterile, lay them out on the bathroom counter then BANG BANG BANG shoot em up one after the other. That may seem a little extreme to some and even warranted a “Oh Sylvie, NO!” from my mum but I didn’t do this for shock value I can assure you. I actually found this method safer for me for a number of reasons. Keep reading for more details on Day 11…

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My photo shoot with Cosmo

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I took this photo while I was perving on all the sparkly spangly things at my photo shoot for Cosmo on October 14. Sadly none of them were meant for me so I just drooled and fantasised about being a modern bridal-wear model dripping in sequins and fluffed with fur coats while I sat on the couch waiting until it was my go. (There was a real model before me which pissed me off royally because I knew I’d look like even more of a dick trying incredibly hard to look totally natural. Bitch.)

Time for makeup. I was very excited to see what I’d be styled in and how many different outfits I’d get to try which is hilarious in hindsight because I was given a plain white singlet to throw on for a single head-shot. What a dick. Thinking I was gonna get some sort of fashion spread like I was Kate bloody Moss or something HA! I’m still baffled by my unbridled self-indulgence in that moment – what on earth was I thinking? As I had one squinty eye on the model pose pose posing while my hot pink lippy was applied and my eyebrows were coloured in, I watched my glossy 6-page-spread vision droop and deflate like a sad penis on a cold day.

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Day 6 egg freezing

Day 6 belly

You can see in this photo how swollen my belly is getting from all these injections and growing follicles…

I cannot even count the number of ex-boyfriends and phallic symbols or just blatant dicks in my dreams last night. (they came in many forms; dickheads, several dildos, people being dicks, actual dicks) Jesus Christ! (he isn’t a dick and did not appear in my dream) I actually woke up feeling a little embarrassed to be sleeping with myself like “woahh chill out girl!” When I got a glimpse of my reflection in my bedroom mirror my face was priceless – like I’d just been caught red-handed, mid-act doing something naughty. Except I’d been caught by myself. And it was just a dream… But dreams are rarely literal and I know that with a tiny bit of unpacking, it will be glaringly obvious what all the phallic stuff was for. Even as I type this it’s just so clear… hormones, the uncomfortable internal ultrasounds at Genea every few days with that cold, lubed up, phallic probe, creating potential new life in the most unnatural way possible – without a penis or sperm, all the “partner not applicable” sections I’ve had to scribble over forms, doing a (typically) couples thing on my own as a single 23 year old, making 50% of a baby in this clinical, unsexy environment, and yes sure my sex drive is in over drive … dozens of reasons.

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