Written by Justine Stella
The detonator was the diagnosis itself.
Through my anaesthetically numbed body, I watched and listened. My surgeon was due to come into the ward at any moment. I was on the edge of a cliff, wondering if a diagnosis would be my saviour or the very thing to push me over. I swallowed the haze in my mind, remembering from previous unrelated surgeries that moving my throat would keep my mind from melting away.
I blinked and she was there. Her scrubs were such a blue that I had to swallow again. I asked, ‘Do I have it?’
‘Yes,’ she said.
I nodded and breathed.
‘Yes, you do have endometriosis.’
That moment changed everything.
As my nurse removed the cannula from my hand, I watched with the diagnosis in mind. As a pharmacist explained the medication I’d been prescribed, I listened with the diagnosis around me. I had not gone over the cliff.
More than 11% of womxn* (more than 830,000 womxn) in Australia will experience endometriosis at some point in their life (Endometriosis Australia 2020). The condition is where tissue similar to the lining of the uterus grows in other parts of the body causing a variety of symptoms, the most prominent being pain (Endometriosis Australia 2020).
I’d known it existed but had never thought it applied to me. ‘People with endo suffer so much worse,’ I would think as I lay curled on the floor instead of sitting in my high school English class, trying to curl the pain out of me. ‘At least I don’t have to be hospitalised,’ I reasoned as a flare speared my centre, years before I ever thought to see my GP about this incapacitating pain.
But with a diagnosis came context and information.
A person can be in inconceivable pain and only have spots of endometriosis measuring 2 mm The first question young people have when they start their first jobs shouldn’t be, ‘But how do I work when I have my period?’
With a diagnosis came understanding. ‘This is why sex hurts for you,’ my doctor explained. ‘This is why …’ Suddenly, my experiences had an explanation. Suddenly, I was not a sook who just couldn’t handle pain. Suddenly, I was not imagining it.
A diagnosis does not always come with all the answers.
There is currently no known cause and everyone’s experiences are different (Endometriosis Australia 2020). Some womxn can have no symptoms but have a pelvic region riddled with endometriosis. Some symptoms are scattered for some womxn and because surgery is the only accurate way to diagnose endometriosis, a diagnosis can take years to reach (Endometriosis Australia 2020).
A sense of grief can come with this diagnosis too. No matter where you look, no matter who you talk to, the answer is the same: there is no cure for endometriosis (Endometriosis Australia 2020). There is also no ‘best treatment’ (Endometriosis Australia 2020). The treatments available will work differently for different people. And the treatments all come with possible side effects and complications. There is no guarantee.
Nevertheless, the diagnosis comes with options and hope. There are ways to relieve symptoms and things to try. ‘I recommend starting with a Mirena IUD,’ my doctor said. ‘An intrauterine device, it acts as contraception and will stop you bleeding. Three-quarters of my patients have had an improved quality of life with the Mirena because stopping the bleeding nearly always stops the pain. You have mild or stage 1 endometriosis and generally a Mirena works very well for mild endo.’
The diagnosis does, however, come with a community. There are support groups where people with an endometriosis diagnosis automatically fit in and dedicated doctors who can translate a vague symptom into an explanation. There are other Endo Warriors in my social circles. I don’t know enough yet to give advice. But now I can say, ‘That happened to me and it has a name. Maybe you could speak to a doctor?’
I am only at the start of this journey and I still have a lot to learn. But I know now the importance of urging yourself and the people around you to see a doctor. If you’re in pain, you don’t have to drown in it. When this diagnosis burst into my life, I knew I was not alone.
* Endometriosis affects people with a uterus and can affect individuals in the transgender community and people who are non-binary.
Endometriosis Australia 2020, What is endometriosis?, Endometriosis Australia, retrieved 9 December 2020, <https://www.endometriosisaustralia.org/>
Justine Stella has a Master of Arts in Writing and Literature from Deakin University. She draws on her experiences to write pieces that will hopefully help readers feel less alone.