endoactive

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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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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Visanne Day 1

image2-1Side note: I wrote this post on July 3rd but it mysteriously got deleted. I started again. Now it finally makes it’s way back onto my blog. However I am back-dating it so it is clear which date I started taking Visanne.

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So today is Day 1 on Visanne. I’ve had my box of Visanne sitting in my bathroom draw since it was released on March the 3rd this year. Since our wildly successful campaign on change.org to have it released here in Australia, so many people have asked me how I’m going on it – assuming that I’d be taking it as soon as was made available. However, the campaign to have Visanne released in Australia & NZ (unfortunately it was not released in NZ sorry Kiwis!) was not just about me, nor was it ever designed to only benefit me. It was based on the principle of equal opportunity and that if there was a treatment option for Endo available overseas, we all deserve the opportunity to try it if we want. All of us. And that is what we achieved.

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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

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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