This Independent Life: giving the pain a name
Putting the whole story of my endometriosis (endo) journey into 1 short blog post is probably impossible. As something which affects so many aspects of life, there are consequences in ways one never would have imagined, and thus elements that pop up in unexpected places. But here’s how I first got a name for the pain I was experiencing for 10 years.
In 2021, I was diagnosed with endometriosis. To say it was a relief would be a lie. I was terrified when I heard the words, said in such a casual manner by the doctor, “it sounds like it’s probably endometriosis”. My step-mother had endometriosis and was infertile as a result. She was the only person I ever knew who’d had it, and was how I first heard about it years before. She’d had a terrible time with it, and the thought of having to be labeled with this same thing was anything but relief.
Combine this with the fact that the words “it’s probably” really meant “we have no idea of knowing unless we operate on you”. Turns out, even in 2021, there’s no definitive non-invasive diagnostic test for endo apart from surgery. No blood test, no urine sample, nothing. The first step was having an ultrasound scan. The only ultrasound scans I’d ever heard of were the ones you see on TV and in films of people who are pregnant, a healthcare professional casually rolling a small instrument over a woman’s belly with a relaxed “it’s a bit cold” as they apply some jelly. Alas. This ultrasound scan was not on my belly, but inside me and using a giant probe almost the length of my torso. Instead of a comforting “it’s a bit cold” jelly, cue some “it’s a bit cold” lube and the probe being slowly inserted. The doctor moved and swirled it around, a strange and rather unpleasant sensation, making small talk as she went. Until she stopped talking, and the energy switched. A large black ball had appeared on the small screen attached to the probe.
She had found an endometrioma growing on my right ovary. It wasn’t confirmation but strong evidence that this had been the cause of my symptoms. These things are also known as “chocolate cysts”, something which I thought was a joke when I first heard it as I couldn’t see why anyone would want to associate something so delicious with something so awful.
After a wave of emotion and some tears, the doctor said we should schedule surgery to remove it and get biopsy lab tests to get confirmation that it was endometriosis. But not before I was told “at least it’s not cancer”, a sentence which I don’t disagree with but still struggle to understand. When I asked what alternative treatments there were, she said that there were none. The options were to either pain manage, explore using different hormonal contraceptives, or surgery. In 2021. For a condition that affects 1 in 10 women.
I hadn’t made up my mind what I wanted to do yet, and I was still in a state of shock frankly, but I knew that I was 1 step closer to resolving an issue that had been affecting me for years. I had a sense of hope for the first time in a long time.
