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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

Hospital Quickie

 

Tomorrow I’ll be making a quickie trip to hospital to have a Colposcopy because I am a Hospo Head. I actually hate hospitals. A lot. But then so do most people. I’m having this procedure done because I’ve had 3 low-grade abnormal pap smears in the last 12 months so my doctors think it’d be best to have a look around, take some biopsies and make sure everything is sweeto burrito. Normally a colposcopy takes 5 or 10 minutes and is done in the doctor’s rooms but given my track record of “quick, easy, pain-free” procedures turning traumatic, my surgeon has booked me into theater.

I’ll be put under a ‘twilight’ aneasthetic. Doesn’t that sound fun? I love that term so much. I’m visualising a swirly path of twinkly stars with rhinestone studded geese and Harry Potter’s house-elves and Falcor the Lucky Dragon who looks like a giant white dog from the Neverending Story all there to guide me to the Congress of Mythical Creatures. I’m almost looking forward to it now! Anyway the ‘twilight’ means I won’t feel a thing and if my surgeon finds any abnormalities that need lasering or removing then he can do it on the spot. Not gonna lie I did get a bit scared and upset when I first found out. It was a slight shock and the thought of hospital gives me anxiety but I’m feeling ok about it now and I’m sure everything will be cool as a cucumber.    Keep y’all posted on my Hospital Quicke!  x

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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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A sea of flowers after the Sydney Siege

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Watching the siege unfold last night didn’t feel like real life. The magnitude of what happened took a while to sink in and when it did I was surprised at how quickly I crumbled and felt almost guilty and self-indulgent for being so affected when this was not my tragedy. I shocked myself. Mum explained to me through my tears that some events can open the gateway to release all the emotions we’ve been bottling up.  Continuing to watch the news on TV began to feel too sad, too overwhelming and too passive so as a family we went to the memorial at Martin Place. What an incredibly powerful experience.

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It felt like a sacred ground where every type of person came together to grieve and show their support. Behind us in the mile long line of people waiting to put down flowers was a homeless looking man named John. He had cerebral palsy, he walked with difficulty with a cane and looked like he’d lived a hard life but even he came to pay his respects. He didn’t have any flowers so I gave him some from our huge bunch, then another woman did the same. It was a nice moment. A group of people began singing John Lennon’s Imagine while hundreds of us silently let our thoughts wander. The expanse of flowers is unbelievably moving. It was so sad being right there where it all happened but what an amazingly uniting experience on a gorgeous Sydney night. Still getting goosebumps thinking about that gorgeous sea of flowers at the makeshift memorial and the thousands of people standing together in humbled silence after the longest night – something positive and meaningful to come out of such senseless horror. Thinking of the victims and their families tonight x
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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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A Gal Can Dream

Normally I dream vividly and in technicolor. Sometimes they’re so real that I remain in that dream state, full of adrenaline and totally detached from reality for hours, sometimes a couple of days. I haven’t dreamed like this in a few months I think because my sleep has been so light and my minds been too racy to allow me to draw on any subconscious thoughts – just too present in reality! Not always a bad thing I guess but it’s nice to escape.

Last night I started spotting lightly and was in considerable pain again – this has happened a few times since I’ve come off the pill but I have to have two ‘normal periods’ (whatever the hell that means – haven’t had one in years!) until I can go into my fertility clinic and have all my tests done to see if I’m ready for ovarian stimulation, followed by egg retrieval at the right time.

I woke up this morning having dreamt about my entire family getting ready to go to some other family member’s baby shower – not really sure who. I’m sure this has a lot to do with all these fertility and baby thoughts I’ve been having and also the new arrival of my perfect little baby cousin, Kobe, who I got to hold and nestle 2 weeks ago when he was so so tiny and new. What an incredible feeling – what is it about babies that just overwhelms you with love!! I can’t wait to watch him grow up and be his surrogate aunty. Anyway a side note in this dream was that all us Freedmans were huddled around a giant saucepan collectively creating the worlds biggest ham and cheese omelette. That may be some wild metaphor for something or just code for me waking up starving and craving a ham and cheese omelette! Eggs… Fertility… New life… There must be something Freudian to that I’m sure.

Part two of my dream was that I was chilling down at Sydney harbour when a friend of mine decided to go swimming even though I begged him not to and warned him about sharks (a creature I’m both terrified of and absolutely obsessed and fascinated by) and sure enough, right after he jumps in, up comes this monstrous fin and a 20 foot Great White grabs him by the torso! As I reach out to try and pull him out of the water, the giant shark suddnely chomps down on my arm and pulls me off the dock and under the water as well.

I cannot explain how real this felt, I could see underwater and was holding my breath trying to remember what the millions of Nat geo shark week docos had taught me to do in this situation. I tried to punch the shark in the nose but it let like my fists were gliding through thick honey and we continued to be clamped down together and pulled deeper to the ocean floor.

What happened next is still chilling my bones – I gripped the shark’s face with both hands and started gnawing and chewing on its head, through its skin and flesh (gruesome!!) I was literally ripping out chunks of the poor thing with my teeth like some kind of barbaric animal so that it propelled us up above the surface, opened its jaws and released us so we were able to clamber onto the dock to safety.

What does it mean!!!

Blood reference – that’s obvious. The unexpected. Fearing and appreciating something in equal parts. That we overcome things we never thought we could to save ourselves or the people we love? Even though the shark was trying to end us both, I love those creatures and would never want to hurt them. It was such a bloodbath of torn flesh that even though it was just a dream I feel murderous and upset by what I did. I’m hoping I’ll figure that one out with some analysis and conclude that it meant something else entirely, which dreams almost always do.

As graphic as that was, it felt nice to dream like that again – really wakes you up!

(I also dreamed I bought a bangin’ pair of $350 Karen Walker sunnies I was pining over the other day so that lightened the mood, but was a rude awakening to wake up and find that I still don’t own them and most likely never will.)

Interview with Cosmo

SylCosmo

HOLLER!! Today is a new day and it’s hard to believe I was a depressed cave woman unable to pry my white-knuckled fists from the corners of my doona for the past 2 days because today I feel fantastic! I was up bright and early, back on track with Kayla Itsine’s workout plan, hit the gym, read over my Endo fact notes, dressed up like I was Hittin’ da cleerb and at my meeting with the gorgeous Lauren from Cosmo by 11am.

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Hurricane Suze 2.0

Today Hurricane Suze 2.0 hit me like a brick in the face after an orgasm. Violent and brutally unforgiving. It was a nasty concoction of things that built up very quickly and again it just came on so strong and sudden I felt very close to panic attack. I went from extreme highs to extreme lows in a 12 hour time span – something my psyche doesn’t seem to cope with too well at the moment. There was ‘complicated relationship’ drama and pointless arguing while supposed to be on a romantic 48 getaway. Romance lasted maybe 12 hours. That subject is just making my brain and heart hurt so much that’s about all I can say.

I was over tired. Even though Kayla Itsine’s workouts have been making me feel incredibly energised and amazing and happy, I’ve mysteriously gone the other way and my body has inexplicably been waking me up at 4am on the dot every day for a week. Bright eyed, bushy tailed, ready to rock n roll. On the one hand it’s fantastic – I’m achieving more by 11am each day than I normally would in an entire week! But – my body needs rest and recovery so 5 hours of sleep or less every night… Why!!!

Also being off the pill – don’t wanna blame shift entirely cause I’ve got a lot of learning to do regarding dealing with my emotions. However, it’s so clear to me that I’ve become oversensitised and vulnerable to any and all feelings and emotions I have – whether they’re positive or negative feelings, they’ve all had the volume cranked up to ear-bleeding decibels and there is just no safety from that kind of volume.

My feelings, emotions and hormones just went so catastrophically all over the place today I felt dangerous. Like I could just suddenly do something crazy and snap at any second. I hate that way outta control feeling it’s so scary.

Unfortunately, as hard as I tried, no mindfulness or willpower or meditation or deep breathing could yank me outta this one so I surrendered to a cigarette, a Valium and a 48 hour snooze/sleep/bawling session. I’m only human.