"I own Endo, Endo does not own me".

October 20, 2015

 

 

 

I am 28 years old and I have Stage 4 Endometriosis- the highest grading we have in Australia.

I had to have a hysterectomy the day after my 23rd Birthday due to Adenomyosis, yep I hit the double jackpot of having both diseases!

Endo is like living in hell! It causes unbelievable, indescribable pain, swelling and well, just sheer agony!

As if the pain isn't enough, the swelling we get makes us look pregnant, I've included to photos, both taken today which show the extent of this, and the reason every time I leave the house I get congratulated on my 'pregnancy'.

Endo is still such a taboo topic, for crying out loud, we are in 2015! Women should not still be forced to suffer in silence!

Endo is such a horrific disease, not just because of the pain and suffering it causes, but because it's an 'invisible disease' which means people don't understand or believe the full story of what sufferers go through every single day. This HAS to change! Which is why I'll ALWAYS keep talking, keep advocating for women, for more support, more awareness, better understanding and most importantly, a cure!!

Thanks to the vicious beast that is Endo, I have spent the past 9 years having to undergo many excision surgeries. I have Endo in several locations that make excision very difficult, and unfortunately that means despite the wonderful excision skills of my specialist, I fall into the 20% category where excision isn't 100% successful long term.

Some days it feels like my body is completely crumbling, it is screaming at me. I no longer remember what it is like to have a normal, pain free day.

I am about to undergo my 15th surgery in 10 years. Yes, you read that right, my 15th, th​at includes hysterectomy, bilateral oopherectomy along with many laparoscopies and excision surgeries. This next op is another surgery for excision of Endo. And I'm counting the days for it, to have a clean out, go through the recovery and get some relief.

Along with raising awareness and bringing more spotlight and attention to Endo and the thousands of women who suffer because of it, we also need to bring attention to the public health system. 

I know of some women having to wait up to 12 months and sometimes even longer, to finally get their surgery date. I am 'lucky' on that front that I've never had to wait over 3 months due to the level of disease I have, but even that feels like an absolute eternity when you're trying to cope with severe, daily pain and function as normally as possible. Some hours are easier than others, some hours are worse, but we still have to find a way to soldier on and keep our eyes on the prize so to speak. My eyes are currently on my surgery, and bringing more knowledge and support for the 1 in 10 women who suffer. I try and keep focused, I am Mum to one beautiful 6 year old boy who makes every day busier and brighter. I've also recently jumped on the 'Adult Colouring' phase, I've found sitting down with one of my books and colouring really helps take my mind off the pain and zone out of all the stress that comes with it. I also use a wonderful app called 'Relaxed Melodies' every night as I try and calm my mind and body down to rest. I think another thing that is really important is to say "I own me, Endo does NOT own me"!! There are a lot of times in a day where it's hard to remember that, but I've found Relaxed Melodies, and colouring helps me to refocus on what's going on. 

But, no matter what, no matter how uncomfortable it makes other people, no matter how embarrassed I may get, I will always keep talking, keep spreading awareness. If I can make the difference for just one person, if it means they don't have to suffer in silence, then it is all worth it!!

 

#endoaust #endometriosis #endo #1in10

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