Life (and writing) stop for illness: my life with endometriosis

Apologies, readers, for my long absence.  I have been recovering from surgery for endometriosis, and now that I am starting to feel more like myself again I’ve decided to deviate from my usual focus on writing to talk about my experience of living with this disease.

Endometriosis is a condition affecting roughly 1 in 10 women.  It cause, amongst other symptoms, debilitating pelvic pain and infertility. There is no cure and the most effective treatment is surgery, which for many women means multiple surgeries throughout the twenties and thirties. If you’d like more information you can read more about this disease at The Royal Women’s here.

When I was first diagnosed in 2004 I had never heard of endometriosis, despite having suffered the symptoms since a teenager. Even though I knew my menstrual pain was worse than that of my friends, I still assumed it was somewhere on the spectrum of normal and never even talked about it. Even as my pain grew worse over the years, and I began to have breakthrough pain outside of my cycle, it wasn’t until a cyst was found in my ovaries, approximately seven years after menarche, that I realised my experiences were not normal, that my pain was actually because of this disease that I now had a name for, along with all the other side effect that I had never even questioned before; and as all writers know, once you have a name it changes everything.

Now, increasingly I see endometriosis mentioned in news and social media, and in particular, I see awareness campaigns on social media, such as the campaign by Lesley and Syl Freedman, which you can read about at their Facebook page EndoActive, and this video by Miss Diagnosed which you can watch at the bottom of this page. So I thought I’d do my bit to raise awareness about endo, as I call it, by writing this little piece about my experiences, in the hope that the more endometriosis is talked about, and the more that women’s issues in general are talked about, that no more young women suffering endometriosis will normalise their pain but instead will get the help and support needed to deal with this illness.

Of course one of my blog posts would not be complete without a poem, so here goes:

The fight

I’m a fighter;
no matter what happens, this fear
won’t quiet me, this pain
won’t crush me, this anger
won’t consume me, this fatigue
won’t quell me, this life
won’t conquer me—

I’ll fight and I’ll fight and I’ll fight,
I’ll be bruised, battered, broken,
I’ll bear the scars of my battles,
I’ll be bathed in blood and
wounds that cut down to the quick,
blows that steal the breath from my feet
that leave me leaden and limp in the ground—
but every time I’ll rise, fists at the ready,
and I’ll fight and I’ll fight and I’ll fight.

Phone August 14 1747

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3 thoughts on “Life (and writing) stop for illness: my life with endometriosis

  1. Hey there please do not give up hope or dreams. I have stage IV endo and after 2 ivf cycles, I now have been able to have 2 children. Each cycle I only got one egg first cycle and = my daughter and second IVF cycle = 2 eggs I got my son and one is frozen.

  2. Hang in there, hun! Right there with ya!

  3. Kate says:

    Good on you for speaking out, especially on the topic of women’s health. Women’s health is still underfunded and under-researched, a result of man-centred, patriarchal society.
    You’re strong as your poem says and a fighter – keep on fighting the good fight!

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