by Maya Trotman

Nearly every evening I would be sitting on the couch with a heat pack on my stomach holding painkillers with a glass of water ready. One evening, the worst pain of my life arrived. I was in the bathroom, scared, because now I knew this wasn’t normal, and annoyed because my painkillers were ineffective while the pain escalated fast. I launched into panic mode and yelled for my Mum. There was nothing anyone could do but wait until the pain retreated. It truly felt like my uterus had become inflamed and swollen to twice the size, but that was my uterine lining shedding, the pain of which is called dysmenorrhea. With no pain relief, groaning didn’t suffice, so I let out a pained scream. After that scream either the dysmenorrhea got better, or I got used to it. Either way, psychology worked.

Endometriosis is a sly condition. There was no specific moment when I felt it begin. The pain occurred when the lining of my uterus sheds outside my uterus during every period, which makes it easy to disguise itself as period pain. But that took me a while to understand. The endometrial pains at school and work happened when I still thought it was normal to feel so bad. I remember the worries swirling around in my head. 

If it’s not my period, surely, it’s just a hormone issue that can be easily fixed with a few pills, right? What if I need a hysterectomy? What if it’s cancer? 

It’s rather sad how long it took me to realize this wasn’t normal. The signs were all in front of me: taking painkillers every day, struggling to stand upright when the worst came, being unconcerned about this pain happening nearly every evening when I didn’t even have my period.   

Nearly every evening I would be sitting on the couch with a heat pack on my stomach and painkillers with a glass of water ready. One evening, the worst pain of my entire life arrived. I was in the bathroom, scared, because at this point. I knew this wasn’t normal and annoyed because my painkillers were no help as the pain escalated fast. I launched into panic mode and yelled for my Mum, because there was no way my younger brother was going in there with me. Mum held my hand. I remember how her forehead was creased with frown lines as she looked at me. There was nothing anyone could do but wait until the pain retreated. It truly felt like my uterus had become inflamed and swollen to twice the size, but that was my uterine lining shedding, the pain of which is called dysmenorrhea. With no pain relief, groaning didn’t suffice, so I let out a pained scream. After that scream either the dysmenorrhea got better, or I got used to it. Either way, psychology worked.   

When the worst had subsided and it became bearable, Dad came in, handed me his phone and said ” Call Uncle Ron.”   

I nodded in agreement and stood up to dial his number. My uncle, a retired doctor, whom we had unfailing trust in, confirmed that I likely had endometriosis.  

“I recommend you get an ultrasound and if that doesn’t show anything, you’ll need an exploratory laparoscopy…” he continued slowly, in his low, confident voice. He explained that a laparoscopy is a procedure where a centimetre-long cut would be made below my belly button and my stomach would be inflated with carbon monoxide gas to make my uterus easier to examine through a narrow telescope with a camera at the end, then endometriosis would be peeled off my uterine walls. He reassuringly informed me that endometriosis is confirmed in over 60% of adolescent girls by exploratory laparoscopies. 

Our call ended and stars suddenly clouded my eyes until my vision abandoned me. I felt lightheaded. My legs felt so weak. Just before I fainted, I yelled, “Mum!”    

A few days later, we took action to get me treated. Our local doctor referred me to a gynecologist. A two-hour wait led to the gynecologist advising me not to sit down too much. That creates tense muscles which aggravates the dysmenorrhea and “when the pain is bad, you may experience more anxiety and nervous tension, and life becomes a real strain”

“I do sit a lot while I study for high school. But I work as a checkout operator where I’m standing up for hours and the pain doesn’t go away,” I pointed out.  

“There may be too much tension. Don’t sit down for more than two hours and do more exercises to relax the abdominal muscles,” she instructed.  

I did. They did nothing to alleviate the dysmenorrhea. But they did help my lower back pain.

Weeks later, an appointment with a nurse at the hospital got me on a two-year waitlist. By now, I was starting the first year of my Bachelor of Arts degree in English. I mentally prepared myself to study with the dysmenorrhea I was getting so used to.  

Eight months later I was sitting at my desk halfway through an essay when I got the call. A kind voice explained she was from the hospital administration and told me that my laparoscopy was booked for the following Wednesday because of a cancellation. After the call, tears ran through my relieved smile. The belief that I wouldn’t be treated until after I graduated with my degree was thrown out the window. I continued studying on a high for the rest of the day.

The morning of my surgery went quickly. I put on the hospital gown, previously unaware that I’d be completely naked underneath, and felt very exposed as I lay on the bed. I thought I could at least keep my underwear on. Thirty minutes later, a nurse and the surgeon who would be with me in the operating room asked me routine questions. Did I smoke? No. Any allergies? No. Did I mind if a junior surgeon performed my laparoscopy? No, sirree. Just get this endometriosis out of me.   

Shortly after, the nurse inserted a needle in my vein for the anesthesia. The last thing I saw was the anesthesiologist push the anesthetic into my IV before quickly falling into a dreamless sleep.

I woke up three hours after the surgery. My eyes refused to stay open for more than a few seconds. Each time I opened them mum and dad had swapped places with each other to see me. Only one parent was allowed.  

Although I couldn’t stand upright let alone walk, I was discharged that same day. It all went downhill from there.  

That night my mum helped me get ready for bed. My brother helped me lie down in bed. Suddenly, pressure slammed into my chest. I took an urgent, short gasp, which caught my brother’s attention. I tried to relax, but no matter what I did, I couldn’t breathe.   

“Help,” I said, breathlessly.  

He lifted me back up.  

“Something’s wrong,” I panted, now able to breathe.  

“Maybe try lying down again?” Mum suggested.  

I nodded and reluctantly let my brother lower me back on the bed. But I felt my lungs becoming more restricted as the same pressure arose in my chest. I shook my head and quickly sat upright. My skin stretched in pain. 

“Crap, I forgot I had stitches.”

“I can’t,” I said, tears running down my cheeks.  

“Ok, I’ll get the lazy boy,” my brother said.  

I slept restlessly in that lazy boy chair with my legs elevated. When I woke up, my feet were so swollen I couldn’t feel them when I walked.  

As if last night’s event wasn’t enough, the shortness of breath still didn’t leave me the next day. I succumbed to the hospital’s four hour wait time, anxious to find out what was wrong. Had there been a surgical complication? What if it got so bad that I suffocated in the waiting room? Maybe that wouldn’t be so bad if that’s what it took for a doctor to see me. Countless thoughts swirled in my head.  

It’s amazing how many different medicinal views I encountered from doctors during this experience. I am not the only woman who struggled to get answers; other women have felt dismissed when nothing could be identified on an x-ray or ultrasound.  

But having neither a single doctor believe you nor not know what’s wrong, that’s scary. The first nurse that I saw suspected it was a complication with the laparoscopy. The first doctor that I saw didn’t see any reason to be concerned and said, “some discomfort and difficulty is to be expected after this procedure”.  

The first surgeon from my surgery that I saw was nervous about my return because she thought she had nicked an intestine. 

When it became clear that no one could tell me what was happening to me, my dad gently insisted that they give me a chest x-ray and let me stay in the hospital for overnight observation. The bonus to this was that we both knew I would get a full night’s sleep. And it came easily.  

The next morning, my surgeon told me, “Your chest x-rays show that you have some loose air in your diaphragm.” She meant that I have leftover carbon monoxide gas in my lungs and chest area from the laparoscopy.  

“It will leave your body in a few weeks. Rest in the meantime,” she advised me.  

Loose air? Was that all it had been? 

I wondered.  

But within the next few days, recovery had taken priority over questioning their diagnosis.  

Four weeks later I was studying, sleeping properly and recovering from a three weeklong period; a nasty, uncommon side effect that I wasn’t told about.  

One night I was laughing with my Mum, and she said, “you don’t have any pain now, do you?”  

“Nope,” I said, smiling.  

She looked at me for a moment, then said, “I’m so proud of you, honey.”  

“Thanks, Mum.”  

In that moment an awesome thought occurred to me.  

“I beat endo”, but how many more women haven’t said that yet?