Sometimes I sit back and reflect on the impact that Endometriosis has had on my life, the good, the bad and the ugly. For me it's been a long journey with over 30 surgeries (I stopped counting once I hit 30) over 17 years. I consider myself lucky, you know why? Well here goes...
I managed to get through my teenage years relatively unscathed (apart from getting up to normal teenage mischief) with painful periods that sometimes stopped me but generally I pushed through, I was heavily into sport, I was even a two time national Taekwondo Champion. Life was good and I grew up, moved interstate to pursue my career and was carefree. Then came Endo, well lots of surgeries, years of doctors and treatments and then eventually a diagnosis of Endo.
I was lucky, I managed to wait until I was 21 until my first surgery and had my teenage years without a care in the world. Some of the girls who are volunteering for Endo March were as young as 14 when they had their first surgery. My heart breaks for these girls, they will not know what it is like to live without pain, doctors’ appointments, treatments and the constant fear of needing yet another surgery.
The other reason I am lucky? Despite Endo slowly destroying my insides and losing my ovaries over various surgeries I am very lucky because with the tenacity of my doctors and the gift of egg donation, I am lucky enough to be a mum. Through the incredible process of IVF I have a son, and this is a gift I cherish every day, even the days he is throwing tantrums and being his cheekiest, because I know for many of my fellow sufferers this is something they can’t have, or will be robbed of.
Whilst infertility isn't 100% certain, and is different for everyone, for many women they will be robbed of this, either because they physically are unable to conceive, have lost their ovaries or uterus, are unable to afford the cost of IVF and are unable to find an egg donor.
Is it easy parenting, working and volunteering while in chronic pain? Well no, it's hard, it's exhausting. It means sacrificing other things so we can get by, it means bargaining with yourself, saying 'if I do the cleaning today I won't be well enough to go out tomorrow'. It means cancelling on friends or excusing yourself early because it hurts too much to stand up or drive or sit for too long. It means feeling like a failure sometimes because you can't do what others can and you judge yourself by standards you can never meet.
So how do we get by? We plan ahead, we schedule our lives so that we have time to recover from one thing to make the next, we prioritise, we hide the pain on our faces, we excuse ourselves and hide in the toilet until the pain eases and the tears pass. We continue on because what choice do we have, we can’t let the disease win.
Each day we get up, put our brave face on and as my mother says, we ‘put on our big girl panties’ and tackle the world all the while hoping it won’t be one of our bad days. And when it is one of our bad days? Well sometimes you just have to curl up with a hot pack, a good movie or book and get through the day, hoping tomorrow won’t be the same.
So why am I lucky? For me it’s simple, every day I am not in hospital having another surgery is a positive (even though I have regular dreams I’m in surgery), every day I am up and out of bed and facing the world is an accomplishment, every chance I get to spend time with friends and family and don’t have to cancel is even better. And every day that I talk to the people involved in Endo March I feel great because I know that we are helping people start conversations about a disease that affects so many women and we are empowering those with the disease to turn it into something positive.
But do you know what would make me even better? Helping other girls and women who are not as lucky as me, the ones who are suffering right now and feel alone and desperate, through Endo March and Endometriosis Australia I want all of those women to know they are not alone and help is out there, so hang in there, keep your brave faces on and try and I hope you will join us at an event on March 28th.
National Project Manager - Endo March