Endometriosis and Me, or Endometriosis IS Me
By Jess Peak
Jess Peak has endometriosis. She is pretty certain that she’s had it since she was 15 years
old, but was only formally diagnosed in November last year. Jess is going to share with us a
piece that she wrote during one of her hardest times living with this disease; in the hope
that others can gain an insight into what it is like to live with endometriosis.
She started off as that person in my life that I only saw once in a while; and even though I
dreaded the time that I had to spend in her presence, there was little I could do to avoid it,
so I strapped on a smile and practiced my best niceties, going on with my day trying to zone
her out. But as time went on, she started showing up more often, uninvited and
unexpected, louder and more obnoxious than ever, imposing herself into my business,
making it impossible to pretend she didn’t exist, impossible to stop my fake smile from
turning into a painful grimace.
Then one day, she moved into my house! She moved her things into my room, she slept in
my bed, she went to work with me, she went grocery shopping with me, she was
EVERYWHERE that I went, and I couldn’t get away from her. Before I knew it, we were
inseparable, I had become her! I had changed. I had become just as miserable, sad and
painful as she had made me feel. I couldn’t differentiate myself from her anymore. Where
did I begin, and she end? WHY WOULDN’T SHE JUST LEAVE ME ALONE? She stopped me
from socialising with my friends, she made me take days off work, she stopped me from
being intimate with my husband, she made me not want to leave my house. She was slowly
stripping everything I loved about my life away from me, and I just sat there, helpless and
let her!
Let me introduce you to ‘Endometriosis’, and yes, her name is just as ugly as she is.
Endometriosis and I are only recently acquainted on formal terms ourselves, as with most
sufferers of this vile disease, it took far too long for my symptoms to be given this ugly
name. 12 years too long in fact.
From my very first period at 15 years old I suffered with pain and heavy menstrual bleeding,
but that was normal for teenagers, or so the medical professionals told me. I went on year
after year, being floored for 2-3 days a month in agonising pain and with bleeding so heavy I
constantly battled with anaemia, but that was ‘normal’, or so the medical professionals told
me. All women get period pain, maybe I just had a low pain threshold, maybe I needed to
‘just toughen up’. I normalised this way of life, I showed up at work, dosed up on pain
killers, hugging a heat pack, smiling and pretending everything was just fine!
Well everything wasn’t fine! It wasn’t until one day, that I was in a toilet cubicle at work;
wailing out loud, having excruciating contractions of pain that I physically couldn’t stop
myself from screaming out, tears streaming down my face and desperate for none of my
colleagues to hear me; that I had a wakeup call! This was not normal. This was not just
period pain; I could not continue on like this.
Fast forward another year, 5 different GP’s, 3 specialist Gynaecologists, 1 A&E visit and 10
months on an outpatient waitlist and the pain is no longer isolated to ‘that time of the
month’ it’s all the time of the month, ovulating has become just as painful as my period,
pain that is no longer just in my abdomen, but my lower back, legs, bum, chest, bowels,
bladder, kidneys; going to the toilet feels like my insides are being ripped out, I get sharp
stabbing pains throughout the day that make me yelp out loud, my breast glands are
swollen and sore all the time, my head feels like its stuffed full of cotton wool and I cannot
think straight, I am fatigued always, sex is painful and I am broken.
I have had days so dark over the past 12 months because of this disease , that I haven’t
wanted to go on, I don’t want to live life like this. I have always considered myself to be
mentally strong, but congratulations Endometriosis because you have broken me! You have
taken over my being and infiltrated my life in every aspect and I still feel so GOD DAMN
helpless!
Do I get myself into thousands of dollars’ worth of debt and pay to have excision surgery
privately? Or do I sit and wait and wait and wait for an unknown period of time, until the
public system finally decides that my symptoms tick enough of their boxes to be considered
a priority. No endometriosis will not kill me, but it WILL strip me of everything I am and
sometimes that doesn’t feel a whole lot different. WHY IS NO ONE LISTENING TO ME? Why
does no one in our public healthcare system understand how debilitating this disease is???
The lack of compassion and understanding I have experienced at a primary care level is what
has shocked me the most. No, I cannot just sit tight and wait! No, your strongest painkillers
don’t take the edge off my pain anymore! No, I can’t just go about my everyday life with the
feeling that a bomb has just been detonated into my abdomen, spreading shrapnel into my
organs!
DO YOU HEAR ME NOW!!?? I am no longer willing to sit by and watch myself disappear into
this disease. Endometriosis is NOT me, and she will never be. I will come out the other side
of this and I will live a happy, pain free life, because what doesn’t kill you makes you come
back kicking and screaming like a wild woman! And I am strong, and I will make it through
this, but something has to change, and I need to feel heard!
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This is something that I wrote over a year ago now. It was not intended to be shared with
anyone else. Its raw and unedited and to be completely honest makes me feel extremely
vulnerable.
But when I did share this with those close to me, it really helped them to understand how I
was feeling and what it was I was going through.
So hopefully; by sharing this, it might shed some light on what it’s like to live with
this disease.
And that’s what NABF is all about after all. Spreading awareness.
Over the past year, by putting in place a Killer support network, developing coping
mechanisms, making lifestyle changes, and finally having excision surgery. I have definitely
seen some improvement to my quality of life.
What I have since come to terms with is that this endometriosis journey is not a linear
process. I’ve had to accept that each week, each day, even hour by hour sometimes is just
about learning to ride the waves.
Thank you for allowing me to share an insight into my personal experience with
endometriosis. But mostly, thank you for those who attended NABF and helping to raise awareness around such an important topic, that unfortunately effects too many women and girls.