In 2016 I had to leave a job I loved because I was too sick to work. I’ve since had two surgeries, cultivated an essential but bank-draining team of medical specialists, and developed a truly spectacular tolerance to painkillers.
For me, Endometriosis has been a nuclear bomb dropped on my life.
Scientifically speaking: Endometriosis is a condition that occurs when cells similar to the inner lining of the uterus (the endometrium) decide they’re strong independent cells that’re gonna strike out on their own and make it big, Mama! Endometriosis growths are commonly found in the abdominal cavity of sufferers – getting up close and personal with your abdominal walls or your local organs. Some cells dream a little bigger though, migrating into organs like your bladder or bowel.
In severe cases, the inflammation from endo growths can cause your organs to stick to your abdominal walls (or each other). Think Shelob’s cave from Lord of the Rings but the web is scar tissue.
Oh but wait, there’s more.
The endometriosis growths stick to the same hormonal schedule as the lining of the uterus. So when you get your period—when the endometrium in your uterus partly breaks down and sheds—so do the endometriosis growths everywhere else. This results in the spread of the cells, meaning more growths, and potential scarring of the areas its already growing on. Because those tissues aren’t supposed to deal with this shit, dude.
All of this results in—surprise, surprise—a lot of pain. Like. I cannot stress enough how much pain. I’ve had days where I can’t walk for it. I’ve thrown up from the agony. And those are just the flare-ups. Even on my good days, pain is an ever-present baseline. It’s led to me developing a chronic pain condition – its own super shitty kettle of fish.
Fatigue, infertility, depression, nausea, bowel issues, bladder problems – the list of endo symptoms reads like your pelvis is in a constant state of elevated hangover. Endometriosis is so horrific it makes Stephen King kick himself for not thinking it up first.
“Cool”, I can hear you saying. “So what’s the cure?”
There isn’t one. Mostly because we still don’t know what causes it.
One theory blames retrograde menstruation. Another points the finger at peritoneal cells that spontaneously decide they want to be endometriosis when they grow up. Yet another theory posits endometriosis as an immune system disorder. Theories abound, but no one has facts. Mostly because trying to get research funding for endo is like pulling teeth from a rock.
The only way to treat endometriosis is to manage its symptoms. This means hormonal medication (and all the side-effects that go along with it) to try and calm your menstrual farm, surgical intervention to remove growths when they develop (and redevelop, and redevelop), physiotherapy to stop your pelvic floor from turning to stone, and a lot—like just, so so much—pain management.
I manage my period with an IUD. I manage my pain with an anticonvulsant, an antidepressant, Voltaren suppositories, opiate painkillers, a TENS machine, heat therapy, physiotherapy, and—yes, I have tried it you assholes—yoga. I have permanent lesions on my abdomen from my use of heat packs. I’ve had two laparoscopic surgeries, a stint in hospital hooked up to ketamine, and so many ultrasounds I’m surprised my insides haven’t started their own Instagram.
I use every fucking cent that I put into my exorbitant health insurance and I still hit my Medicare safety net 4 months into the year.
Endometriosis is a shitshow. And odds are, you know someone who has it. If you have a uterus, that person might be you.
1 in 10 people with a uterus has this condition but it takes an average seven to eight years to be diagnosed. Because we’re taught that periods are supposed to hurt, that women’s pain is exaggerated or all in our head. Doctors—those that have heard of endometriosis—often don’t know what symptoms to look for or how to properly treat it. I’ve had symptoms of endometriosis since I started my period at 14. I was 30 when I was diagnosed.
And after all that, I still consider my experience with endometriosis to be a privileged one.
My gynecologist is one of the best in Australia, trained in laparoscopic excision – the gold standard for endometriosis treatment. I’ve had two laparoscopies, but if I’d found myself in the care of a surgeon who only performed ablation, I could have been one of the many sufferers whose surgeries are hitting double digits.
After some trial and error, I finally found a GP who takes my pain seriously. She’s worth her weight in Brooklyn Nine-Nine episodes.
My psychiatrist, who I was seeing before my diagnosis, didn’t miss a step when factoring my physical condition into my mental health treatment.
I have a phenomenal support network of family, friends, and fellow endo bros. It’s enabled me to speak far more candidly about my circumstances than many others in similar positions.
A lot of people don’t have access to the care or support that I do and that should horrify you. Because endometriosis is a frustrating, harrowing, debilitating, isolating, chronically misunderstood condition.
But now you know what it is. So that’s something at least.
NB: This post was originally published in June 2017. This update factors in recent medical studies, my changed circumstances, correct terminology, and some truly terrible jokes. You’re so welcome.