health

'Endometriosis has hurt my sex life. And my partner is allowed to say that.'

It’s a Monday morning, and as if a tidal wave were pounding towards me with the force of a thousand bricks, I’m knocked for six.

My stomach feels sick, my eyes water, I sit at my desk wondering if now is the time to apologise. Again.

Somewhere across the city he sits at his own desk. A message hits his phone; one he’s seen hundreds of times before. He may not be able to feel the wave coming like I can, but his reflexes are quick. He replies something fast and familiar.

It’s OK, he says, it’ll always be OK.

As someone who has suffered endometriosis from the moment my pre-pubescent self discovered her period, a wave of pain isn’t ever new. A wave of pain is the fastest way my body can tell me my period is coming, and havoc will soon wreck.

The wave that comes on the occasional Monday morning – as well as the one that follows on the odd Thursday night and on a random Sunday afternoon –  hits faster than I have time to work out why my upper cheeks are stained with the remnants of salty tears.

Because although guilt isn’t a wave of physical pain, it manifests itself as if it might as well be.

Guilt for everything I’m not, guilt for the toll a chronic illness has on those that don’t bear its scars, guilt for the man who stumbled into my life and became as consumed by the illness as I am. Guilt that I – as the one who is meant to make his life better – can occasionally make his life worse.

Along with its ability to generate pain with the uppercut of a bloodied fist, Endometriosis, can, in many cases, create chaos in a – and my – sex life. Pain and sex long lost twins that come together often, deciding at any given point that sex this week will be off the table. Next week? The state of your body is anyone’s guess. Pain is a fickle little thing.

And so as I hit send on that message on Monday morning after another night consumed by pain that has interrupted our sex life again, my heart cracks just a little. I am once again overwhelmed by the enormity of my pain’s unpredictability.

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On Wednesday, the ABC reported a University of Sydney research student had begun to ask men how their sexual wellbeing is impacted by their partner’s battle with endometriosis. Outrage inevitably followed, like outrage always does. Where is the focus on women? What about their sexual wellbeing? What about the one’s actually experiencing the pain? Many sufferers like me asked.

And they’re right. First and foremost, I am the one navigating the pain. I am the one that is a simmering pot of stabbing sensations, and I am the one that has to manage that.

Being chronically sick turned Sylvia Freedman into a warrior for other women.

But you know me, because I am everywhere. You might not know my face, or my voice, but you know my sentiment.

In the last 18 months, there’s been no shortage of voices like my own saturating the media landscape, advocating for an illness that has been invisible for so long. But in all the confused and misguided outrage, many are forgetting that endometriosis isn’t a one-woman disease.

Endometriosis is more often carried carefully by the ones in her direct orbit. Her mother, father, sister, brother, partner. My boyfriend; my lovely, resilient boyfriend, carries everything but endo’s physical manifestation.

His mental health is important, his sexual wellbeing is important, and his opinion matters.

In our critique of a study that has enormous purpose, we’re sending a brutally unfair message to men. You may sometimes be caught in the crossfire of chronic pain, but it’s not your pain. You don’t own it, so you can’t speak about it.

Although I physically carry every fragment of my endometriosis, my boyfriend carries much of the emotional toll, careful not to let the burden envelope my mental health completely.

He is the one lying next to me as I am crying about occasional painful sex, he is the one consoling me as I worry about the uncertainty of my fertility, he is the one holding back the metaphorical chair I threaten to throw as frustration becomes all consuming.

Don’t tell me his thoughts, feelings and sexual wellbeing doesn’t matter.

He is another player in this game, and he matters greatly.

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