The first time I heard the word “endo” was in a hospital bed, groggy and fatigued from a lengthy laparoscopic surgery to remove the 8cm cyst on my left ovary.
I named that cyst Cordelia the day I saw her outline in an ultrasound. We’d been sharing the same home for a while, so I figured it was only fitting that she had a title.
Wanting to name things is one of my quirks, you see.
When I had a troublesome wisdom tooth removed, I called it Sophia and asked the oral surgeon to put her in a plastic sleeve so that I could keep her. Her name is written in fancy, cursive script on the paper bottom of that sleeve.
I didn’t do that with Cordelia. Not only would that have been slightly too morbid but we parted ways during my laparoscopic surgery, when she was carted off and biopsied to confirm what my surgeon was already beginning to suspect: Cordelia was an endometrioma, a sticky problem that was part of the Stage IV endometriosis discovered inside my twenty-five year old body. An endometriosis which clearly didn’t understand the concept of social distancing too well at the time. It had glued my left ovary to my pelvic wall, coated my bowel, embraced my appendix, stretched over my bladder and travelled up to my diaphragm. If it had been put into quarantine straight away, the problem wouldn’t have escalated as much as it did. It’s a shame you can self-isolate people but not your endo.
Like I said, wanting to name things is one of my quirks. Personifying medical problems takes some of the drama out of a situation and gives me a little bit of perspective. However, when I was given a name for the chronic disease I had been living with for most of my life, very likely since I was eleven years old and had my first period, a chronic disease I wasn’t aware existed let alone had, I was left feeling both happy and strange. I was happy because Cordelia was benign, yet the word “endometriosis” left me puzzled. I had never heard of it before, had nothing to associate it with and spent a few tries mastering the spelling. After overcoming this last hurdle and laying in bed one night in the week following surgery, I did a bit of Googling and found that endometriosis literally means “disease inside the womb.”
The disease isn’t inside my womb though. It’s on top of it, around it, beyond it.
I am no stranger to chronic disease. When I was twenty-two I joined the psoriatic arthritis club. People are still surprised when I tell them about my diagnosis. I’m “too young.”
That’s an “old person’s disease.”
It’s actually not. That’s just what society has taught us to believe.
We’ve also been inherently taught to refrain from discussing women’s health too much, from mentioning the word “period” in public louder than a whisper, even in an all-girls school, to be covert when shopping for pads and tampons, to talk about anything to do with our bodies in hushed voices when around unsuspecting people, to normalise our pain and accept that it’s simply our lot in life. It’s one of the short straws our gender drew, that’s all.
When I joined the endometriosis club and boosted my chronic disease affiliations to a grand total of two, I was grateful because my platinum membership came with a reason. A reason for the debilitating period pain I have experienced since primary school, for the year I fled Palm Sunday mass overwhelmed by nausea, for the time spent in bathrooms wiping away copious amounts of blood and hoping that the pain would be swept away too, for the days I took off from school and felt like a cop-out, for each moment I woke at dawn with someone’s hand gripping my left ovary, squeezing until I begged for it to stop.
What I had trained myself to believe was normal was by no means normal at all.
If that revelation wasn’t enough, I was also given a new lease on life, an opportunity. Being prepared for the fact that Cordelia may have been malignant and then discovering she was a benign endometrioma was relieving, to say the least. It showed me how precious a currency time is. I went to church and thanked God for my second chance at life.
And I was going to make it count.
So I slowed down and ceased being the workaholic I knew I had become. How many letters I had after my name didn’t seem so consequential anymore, nor were submission deadlines as frightening, if at all. I decided I would be more present for the loved ones in my life, my fur baby especially. That same kindness would be extended to my body, whose cries for help I had ignored for far too many years. My life choices would be made with compassion and empathy.
It was the metaphorical kick up the butt I needed to remind me what is and isn’t important in the grand scheme of things.
I have since begun sharing my story and talking about endometriosis with other people. Not just women but men too. I don’t want anyone else to wake up from their laparoscopic surgery wondering, “What is this endo you speak of?” when the nurse asks them how long they have had it for. I want other women to be able to know how to spell “endometriosis” because they read about it at school and have seen it a million times on advertisements, posters, blogs and social media, as much as the words “diabetes” or “cancer.” I want teenage girls to know how to listen to their bodies, to trust what those bodies are saying and to seek help when things don’t seem quite right.
I don’t want someone else to wait fourteen years for a diagnosis they weren’t aware they needed.