awareness

Colposcopy No. 2 Results

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Colposcopy No. 2 … sounds like a lucrative perfume empire doesn’t it? I should really hit up Coco Chanel’s people and see if they’d like to endorse it. Sorry this update has taken me a while to publish – life has been extremely busy with social media buzz from that misleading CNN article, family health stuff (prefer when it’s me that’s sick than people in my family!) + new job. So my apologies for the delay!

Anyways on January 18 this year I went and had my follow-up Colposcopy No. 2 – 6 months after Colposcopy No.1. Last time I had the procedure done in hospital under anaesthetic in case there were any abnormal cells that needing lasering off. CIN2 cells were found on my cervix during that procedure which meant I had ‘pre-cancerous’ cells developing.

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Open letter to CNN, Nadia Kounang & Dr Scott Sullivan Re: Your article on Endometriosis

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Dear CNN, Nadia Kounang and Dr Scott Sullivan,

Yesterday my absolute hero, Lena Dunham, did something incredible for Endometriosis. She got the world talking about it. Dunham announced that she’s been forced to pull out of the promo tour for her hit TV series GIRLS due to an Endo flare-up. I was heartbroken for Lena. But, as the Co-founder of EndoActive – an Endometriosis Activism Group – I was grateful and proud that she had shared this information on social media and thrilled that the media had picked up on it. Any publicity for Endo is good publicity, right? Wrong.

I am absolutely horrified by what you, CNN, have published. You had not only an opportunity to report on an under-publicised, insidious disease that is destroying lives and desperately needs to be taken seriously, needs attention and needs funding but you had a responsibility to report factual, evidence-based research supported by compassion, care and a positive message. To my horror and the horror of the thousands of women I represent, you have grossly missed the mark and published instead an unsavoury, chauvinistic, factually incorrect, medically and morally irresponsible piece of writing that helps no one and in fact undoes so much of the hard work that EndoActive and so many others are doing daily.

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Egg freezing: 1 year on

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December 2015

Egg freezing, 1 year on. A little over 1 year ago I was bed ridden yet again, not from Endo directly but the threat of infertility made me decide to freeze my eggs just in case. Once the very few eggs I managed to produce were removed from my body I felt strangely sad, like maybe they’d never be there again, in the worst physical pain I’ve ever felt and utterly shattered. Knowing that after all my body had been through from egg freezing, I’d likely need to do it again to secure a decent amount of eggs.. Was depressing. I felt so lucky for the opportunity to use incredible technology and had a family that could afford it, but devastated that at 23 this was my life. I should be renting a flat, not freezer space for unborn children!
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Cosmo Women of the Year Awards: All the pics

 

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Felt very humbled to be nominated alongside this girl - Katrina Keshishian, Cosmo's Game changer of the year winner. Katrina is a Campaigner for rape victim compensation - what a legend. Huge inspiration that you can go through hell and come out the other side strong, fearless and courageous. Congratulations Katrina ! Xx

Felt very humbled to be nominated alongside this girl – Katrina Keshishian, Cosmo’s Game changer of the year winner. Katrina is a Campaigner for rape victim compensation – what a legend. Huge inspiration that you can go through hell and come out the other side strong, fearless and courageous. Congratulations Katrina ! Xx

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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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First Endo pain since March

IMG_5113Oh god I’m wearing the same thing as I wore in my last post. How lame. But cbf taking another photo because endo. SOZ! Yesterday was the first time I’ve been in pain from Endo since March. It caught me completely off guard. I woke up feeling fine.. then at about 12pm while I was walking to the shops for brunch I started to get those first few twinges. Ooh.. that felt strange… Then a dragging sort of feeling in my lower abdomen kind of like period pain. But it couldn’t be surely… Then all of a sudden, really sharp achey pains in my hips. I used to massage around my hips constantly because that pain was always always there. But I haven’t needed to in so long… Then that crushing weight on my lower back where you suddenly can’t stand up.. the kind that instantly makes you want to collapse into bed with a hottie under a blanket. (hot water bottle hottie… not human hottie.)

Even though every one of those sensations felt so familiar, I found myself saying in my head things like: “Maybe I’m just really hungry. It must be a stomach ache. Maybe I haven’t been stretching enough while I’ve been hunched over my laptop. Maybe I’m dehydrated…” Ridiculous reasons the lot of them. There’s nothing else that feels like endo pain. Even when it’s mild – you know exactly what it is because you’ve felt it a thousand times before. It has an order that it comes in and despite your brain trying to convince you it could be a simple hunger pain or muscle cramp, you know very well it’s not. But you appreciate your brain coming up with some silly ideas to try and distract you.

All in all it wasn’t so bad. I’m glad I left the house for supplies when I did because the rest of the day I couldn’t move from the couch – wheattie on the back, hottie on the front. The pain wasn’t the major problem but more so the fatigue. I snoozed till 6:30 then quickly got in the car to get to babysitting. If it wasn’t for my 3 little cousins being so cute and cuddly I probably would’ve felt rubbish all night but they’re so funny and sweet that by the time I put them to bed I realised I was feeling way better.

Today I’m left with a giant pain hangover which I’m sure many of you are familiar with. The day after I’ve been in pain I feel so tired I can hardly see, my head is like a bowling ball and my breathing is so shallow, sometimes I wonder if I might actually be almost dead… If I were dead though I probably wouldn’t still have all this uni work to do… dammit! I’m now in that battle with yourself where you can’t decide if you should push through with the things you were meant to do today or give yourself a break and just rest. But you know if you rest today, the mountain of things to do will be bigger and scarier tomorrow and you’ll have way less time to climb it! But sleep would feel so good… I just want to sleeeeeeep !

My Sundays for the past 5 weeks have been ridiculously productive. Sine I started my new degree I use Sundays to exercise, grocery shop, plan my week and do homework all on the same day. Today I feel incapable of any of that. I’m surprised I’m actually typing write now. Even my fingers and wrists are tired. They’re lying down flush with the keyboard while I type cause they’re just too heavy to flutter over the keys like they normally do.

It sucks that I had a flare up yesterday. I’m not entirely sure why it happened. I do know that this week has been one of the most stressful weeks I’ve had in a long time. Lack of sleep. A breakup. Uni work which has been pouring down on me relentlessly. I haven’t been confronted purely by the amount but also the level of difficulty. Have you ever read a sentence where 100% of the words were ones you couldn’t understand? Try 30 pages of sentences like that. Then times that by 5. Then times that by 3. It’s pure hell. It couldn’t be diet or exercise cause I’ve been good with those… Visanne has been fine for the last 2 months (just started month 3). No other changes I can think of. So maybe it was stress… I have cried a lot this week.

Whatever it was, I hope it doesn’t come back but looking at the positives – I’ve had an amazing run of good health this year. A couple of sinus infections and the flu but virtually no endo pain. And for that I feel really lucky. I wouldn’t say that this flare up has been a good ‘reminder’ of what endo feels like because I can never forget that. Being well and active has not made me forget. But it has reminded me of when I felt so awful every day that I was barely able to lift a finger. I couldn’t concentrate, I couldn’t think. Even reading an email seemed so overwhelming to me then that I’d burst into tears just thinking it. After a while, when the pain and fog became chronic my brain would play tricks on me. I sometimes wondered if I was actually in pain and couldn’t move in that moment or if I was just lazy. I couldn’t even feel pain in the way that I used to but rather would just feel the weight of exhaustion. My experience of pain became different and what used to feel acute suddenly felt numb. I started to not be able to tell the difference between pain at a 7 to pain at a 10 to pain at a 4. It all felt the same and I couldn’t tell if I was in agony just ok. I became very hard on myself and very unforgiving.

But feeling the pain yesterday and the fatigue today for the first time in so long has reminded me how real those feelings are. They’re so real and so strong that you are not always able to ignore them and keep going because your body simply can’t. I want to do my workout. I want to get all the grocery shopping done. I NEED to do uni work. But today I feel different. I don’t feel myself and I know I’m not up to the things I’m normally able to do. So I will try to prioritise, try not to get frustrated that I haven’t exercised since thursday, try not to throw in the towel and crawl into bed just yet, try really hard to get some work done and THEN flop on the couch so I can reward myself.

Hopefully a one-off and things go back to normal tomorrow. Man just thinking about doing uni work right now is making me want to give up and go back to bed… gahhhhhh!! zzzzzzzzz

Syl   x

 

 

Visanne Day 40

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I AM GROWING MY HAIR OUT PEOPLE! Look how long it’s getting! I can actually tuck my hair behind my ears again. All seven strands of hair. And it’s wild. However I have of course captured myself at the best possible angle in this photo and 99% of the time my head actually looks so stupid. Underneath those thin strands of hair is a whole lot of mousey fuzz. I knew this time would come, however the awkwardness of growing out an undercut was not something I contemplated until the day after my birthday last year once I’d sobered up and realised that I had indeed shaved off most of my hair. Good times.

So I have now been taking Visanne for 40 days. This is month 2. I have to say that overall the transition has been really smooth! Looking back on my previous post where I diarised where my health was at on Day 1, the two issues I was having were predominantly SLEEP & ALLERGIES.

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