This is a retelling of my experience being diagnosed with endometriosis after 14 years of unexplained pain, digestive complications, and mental health issues. TW: it includes surgery details that some might find ick. Enjoy!
Disclaimer: this is an opinion piece, not medical advice. If you have questions or concerns about your health, talk to your doctor (loudly). This is not meant to inform or educate, only entertain.
This post is a different tune from the rest. As I sit here, recovering from surgery, I have no motivation to write about travel or itineraries.
I’m sutured and drugged, dazed and confused. A winning cocktail.
Since 14, I’ve been in and out of hospitals for a spattering of issues. Abnormal periods. Digestive complications. Mental health struggles. I was poked and prodded and dug around in, only to be sent home with vague diagnoses and no solution. PCOS. IBS. Anxiety.
That was in the US.
In New Zealand, a single ultrasound set off a chain of events that landed me in surgery. I woke up 8 hours later and finally had some answers.
After 14 years of unexplained pain, I was finally diagnosed with endometriosis
Related: Violent Food Poisoning at Church in the Mountains of Lebanon
Pain: the Chronicles of Woman
The thing about my pain is, I thought it was normal.
Period cramps to the point of lightheadedness? Normal.
An inability to digest food? Normal.
Pain during sex? So normal.
To manage these pesky traits of being a woman, I was put on birth control at 14. It set off my hormones, and I experienced depression for the first time. This later mutated to anxiety. When I gained weight, the doctor advised my mother to watch my diet. And every 6 months, I had to give a blood test.
All of this, of course, was normal.
Eight years later, while doing my Masters in pharmaceuticals, I encountered a controversial topic: women’s health. I ditched the birth control (and associated hormone pills), and graced my womb with an IUD.
A one-and-done deal, I wouldn’t have to see the inside of a clinic for five years. My days of daily pill-popping were finally over.
So convinced everything was normal, I tried telling doctors they were wrong
A few months ago, I went into Family Planning to change my IUD. I neared the expiry date and was ready for a quick switcheroo so I could get back to my normal-painful life without doctors for another 5 years.
During a routine exam, the gynecologist “felt” something on my ovary. It hurt of course. Ovarian cysts aren’t uncommon but she recommended an ultrasound, just to have something on file as a new patient.
The ultrasound found a cyst on my ovary. From past experience, I was ready for investigations to end here. A nurse asked if I get these often. I did.
Despite my apathy, they referred me to the regional hospital for another ultrasound. There, they found the cyst had grown.
I was ready to go home but they fished out their notepads and asked me about a variety of things for about 45 minutes. Questions I’d never been asked before… Did I get cramps from peeing? Did I struggle with fatigue? Why, yes. Yes I did.
When finished, I ended up in a surgeon’s office. She said they’d like to take a look at the cyst. And everything else. She suspected the unexplained pain might be endometriosis.
Caught off-guard, I assured her US doctors had investigated this. I didn’t need to confront my hospital phobias and all my worst nightmares about my body for them to find nothing.
“I strongly recommend surgery,” she said. It would be a 90-minute laparoscopy… or more, depending on what they found.
How a 90-minute procedure turned into 5 hours of surgery
Due to COVID-19, surgery was rescheduled multiple times. So when the day came, my nerves were already shot.
Since an incident at 16, I avoid hospitals if I can help it. Many meditation hours prepped me for this day, but primal fear reared its head and all my training unraveled.
Two agonizing hours passed, then Shaun kissed me goodbye with the promise to see me in 90 minutes.
In a choreographed sequence, I moved from one nurse to the next until I reached the operating table. I was shaking and could hardly remember my name as the IV went in.
Anxiety was in my chart, so they enveloped me with kindness. A nurse tried to make me laugh. Another rubbed my arm. Then I was pumped with something that popped my anxiety like a balloon. Suddenly I floated. And I was gone.
When I woke up, everything felt heavy. I remember someone in my ear urging me to breathe. My body shook violently.
Then I was somewhere else, and Shaun held my hand. I was a bundle of pain, nausea, and confusion. I sensed from his tone something wasn’t right. And he looked exhausted.
I left him around noon, so I had to know. “What time is it?”
“9pm,” he said.
I tried asking questions but any movement spun me out. I drifted back to sleep.
Panic attacks, bloody sheets, and a diagnosis
They hooked me up to a morphine pump. Before I went under, the anesthesiologist said they would only do that for severe pain. It was my second clue things didn’t go to plan. I’m not the biggest fan of opiates but that didn’t matter now. I clicked it freely and let my consciousness scatter.
That night, nurses filed in and out tracking my vitals. My body moved through panic attacks and I puked fluids. I avoided looking at my two IVs, the catheter, and compression device on my legs. I disassociated from whatever wasteland my body had become.
The next morning, the surgeon came with answers. Drugged to the gods, I was annoyed she would deliver news in my state. I had trouble keeping up as she galloped through her findings.
They found widespread endometriosis across multiple organs. It took 5 hours to remove it all. The tissue was off to the labs along with the ovarian cyst, which had further grown since the last ultrasound.
“Is this linked to digestive problems?”
Yes.
“And anxiety?”
Yes.
“Why do I have endometriosis?”
We don’t know.
Bed-ridden and in a loop of “what the fuck”
Fun fact: I was so convinced they wouldn’t find anything, I had plans the day after surgery. As it happened, I had to clear my calendar for three weeks.
From the time symptoms start, it can take 10 years or more to diagnose endometriosis. Symptoms aren’t immediately obvious and seemingly disconnected (ie reproductive, digestive, mental, etc). There are no devices to find endometriosis without invasive surgery, so it takes a holistic approach to connect the dots… something the clinical landscape isn’t very good at.
I was in hospital for a few days. I could hardly walk and only had appetite for ice chips. The first time I stood up, blood trickled down my legs and stained my sheets.
I was also in shock. Questions looped obsessively in my drug-induced state. How did it take this long? How many years had endometriosis plagued my organs? Flaring and inflaming my innards while I carried on in grim acceptance?
I’d been made to feel crazy for over a decade. My pain was dismissed so many times that I’d begun to dismiss it myself, even while it wreaked havoc on my life.
That’s the worst part, I think. That I believed it. I tried to make my surgeon believe it.
I’m grateful she didn’t.
It was never all in my head.
My next steps are to continue doing what I’m doing. Except, for the first time, I sense some empowerment.
My diet, exercise, and wellbeing take work. Pain, fatigue, and anxiety are difficult to manage. But my perception changed. My body isn’t “broken”. I wasn’t cursed by the gods.
The diagnosis gave me permission to release the hate and bitterness I have for my body, long-held stories that it failed me. I have a long road to reinstate grace and compassion for my physical self, which will feed upward to my mental health.
Unexplained pain explained: moving forward with endometriosis
The whole thing sucked.
But I’m one of the lucky ones. Endometriosis can damage fertility beyond repair and I can’t imagine the heartbreak of so many women out there. The experience made me an advocate. Add me to the horde of women demanding to be heard. Demanding for more research. (As common as endometriosis is, it’s not heavily studied. Make your own conclusions why.)
And side note: I’m not bashing American healthcare. Maybe in a few more years, someone would’ve landed it.
But I will give credit where it’s due. One ultrasound in New Zealand launched this chain of events. I was questioned holistically and more thoroughly than ever before. And I am forever grateful for the village of doctors and nurses that held my hand through this terrifying expedition and released me on the other side with answers and a chance at reconciling with my body. All for the price of free.
If you have endometriosis, here is a great resource. If you have unexplained pain, don’t be afraid to speak up, endometriosis or otherwise. Also, you’re doing great. Hit me up, let’s talk about women’s issues.
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