March is Endometriosis awareness month. So here is a blog I wrote back in 2019. (Thank you Bindi Irwin for speaking up about this and bringing it into discussions).
It’s hard to describe with any kind of accuracy, my own experiences with Endometriosis.
I want to say it’s like a stone, strapped on to your back. That every month I feel as though I am Atlas struggling to hold up the Earth, but instead of it being strapped on my shoulders, it is inside me pushing against my blood and bones trying to force it’s way back to its intended/original size. But even that is not entirely accurate.
Below is what some months feel like (Almost all months now):
Even that can’t truly explain the pain that often seizes my body. What no image or gif can ever explain or convey is the fear of breathing. With every single breath, this world of pain throbs and beats itself against me. So I take shallow breaths. I try not to move, HA! explain that to an extremely active 6 year old.
It presses against my back in alternating sporadic rhythms of sharp and ache, making my body jerk and shudder. I force myself to live as though the pain isn’t there. And at times I can fool onlookers. I can even start to fool myself with enough distraction … some minutes.
But then there I am, curled up on the nearest surface, be it bed, couch, floor, anything will do. My fists clench around and twist any material, stuffed animal, my sons sicky rag, all to try and wade through the latest burst of agony.
This is just a glimpse of my life with Endometriosis.
Since the age of eleven when I ‘became a woman’ – what a stupid fucking expression that is – I have suffered this debilitating pain. I was not allowed to wallow in it. Three sisters before me managed to tough ‘it’ out (IT being periods not endometriosis). There was no getting out of school or work, no resting because it was ‘that time of month’. So instead my only option was to drug myself up every single month. I felt less like myself, feeling instead like an alien inside my own body, and lying when asked if the pain killers helped.
When I had my son, (after fertility treatments and procedures that showed the endometriosis had actually fused one of my ovaries to my bowels) I had that beautiful blossom of hope, that I would be cured of this diabolic demon, and the first few months I was lulled into a false sense of promise. It was bliss and I thought … ‘oh yes, thank you Gaia.’. Turns out she doesn’t have all that much to do with it and those months of bliss weren’t just a tease but a cruel trick, to show me what my body should have been able to do.
Since then the pain grows worse each month (yep, still getting worse) and I am loaded up on drugs, feel detached from everything and hug wheat bags as though they hold the miracle of life itself.
To anyone who suffers from endometriosis – I believe you, and I’m sorry you are suffering through this.
To anyone who hears someone say they suffer from endometriosis – believe them when they say it hurts. Help them when they have tears in their eyes and are trying desperately to continue as though it doesn’t. If you don’t know how to help, ask them what they need, because what works for one may not work for another. Don’t tell them they ‘need’ or ‘should’ do anything you know has worked for someone else. They may have already tried with different degrees of success and failure.
It’s a horrible invisible pain to go through and the lack of definitive knowledge and not being believed can be just as debilitating as the pain itself.