I Lived With Pain From 14, Then One Day I Couldn't Stop Screaming And Vomiting
As a 36-year-old from Brisbane, living with endometriosis is hard. But trying to keep a job when you have endometriosis is even harder.
It’s not a simple matter of calling in sick when I don’t feel well because for me, that is every single day. Every day of my life I am in pain, so it becomes a never-ending argument in my mind: ‘Is my pain bad enough to take a sick day?’
As a teenager, my periods were always awful but I quickly learned that what I was experiencing was normal (not true), the pain was something that all women went through (not true), and my only option was to suck it up and get on with my life (not true).
These are the things that so many young women are told and they are repeated so often that we believe them.
When I was 14, I was admitted to hospital with severe stomach pains. I was told that all they found were ‘a few cysts on my ovaries’ and that ‘all women have cysts'. So there was no explanation for my pain. I got the impression they thought I was faking it and so I went on with my life.
In my early 20s I got a job in a fine dining restaurant. I loved it. It was a very physical job and I always felt tired but once again, I thought this was normal.
I’d been working at the restaurant for about 10 years when one night after a shift I suddenly woke up in the worst pain I’d ever felt. I couldn’t speak, I was screaming and vomiting and my husband was white with panic.
We rushed to the emergency department and they eventually told me I had suffered from a ruptured cyst and that I would be fine as it would resolve itself. What followed was six months of regular visits to the emergency room as my pain escalated and I received no answers.
Then finally around my 10th visit, I was sent for an ultrasound and it turned out that the ultrasound technician was on loan for the night from the gynaecological department. She took one look at my scan and told me that something looked very wrong and I needed to see a specialist immediately.
My specialist took one look at my scan and booked me in for surgery. As I waited for my surgery date, my condition deteriorated so much that I was having trouble walking.
Lucky for me, my boss at the restaurant was like family and he had no problem giving me a few months off. So I waited for my surgery and looked forward to being pain-free for the first time in my life.
Unfortunately this was not to be. My surgery took over four hours to remove severe stage IV endometriosis from my ovaries, uterus, bowel, bladder, rectum and vagina. I spent three days in hospital and then went home to recover.
After five weeks, I went back to my job but as time went on, I started to struggle again. My pain was returning and I simply couldn’t keep up with the physical demands of my job.
When it got to the point where I was spending my whole shift running back and forth to the bathroom to vomit, I knew it was time to move on.
With a very heavy heart and after 11 years at a job I loved so much, I handed in my resignation and took an office job instead. But even sitting at a desk all day proved to be too much.
I would be hunched over a pillow at my desk, often vomiting several times a day. I kept reducing my hours hoping to find a level I could cope with. But after two years, and with my second surgery looming over the Christmas period, my boss sat me down and told me it just wasn’t working out.
I’m now six months out from my second surgery and things are getting tough again. I’ve been so lucky to land a job that is right across the road from me. They are very flexible and I do 12 hours of work per week but even those few hours are becoming a struggle.
Losing my job is a fear that I have every day. I ration out my sick days like they are precious gems, always worried about whether I can pay my bills this week or if my boss will decide that it’s not working out.
While I am very grateful to have a job at all, 12 hours a week is not enough for anyone to live on. I always fear that even the small amount I contribute to our household may be lost at any time.
I’m encouraged by improvements in treatment, and I know The University of Queensland Institute of Molecular Bioscience has spent more than a decade in this space trying to help women like me. But we still have a long way to go.
In the end, if I didn’t have my husband to help support me, I honestly don’t know how I would survive.
Featured image: Supplied