Endometriosis stole my ‘normal’ and gave me a lifetime of diagnoses and pain

It’s 10 a.m., I’m getting ready for school, and I’m struck by sharp stomach pain. I grab my heating pad and curl up, unable to get to the washroom or class. I thought this was just life — until I learned it was endometriosis.

I started menstruating at age 13, finally entering “womanhood.” But this transition led to more-than-normal painful cramps, making me miss school and rely on a heating pad as my new best friend.

But that’s almost “normal,” considering The Endometriosis Network Canada shares on their website that nine in 10 young people miss school due to endometriosis symptoms.

The pain is almost normalized though. Dr. Jamie Kroft, Deputy Chief at Sunnybrook Health Science Centre’s Obstetrics and Gynecology department shared that 75 per cent of patients have dysmenorrhea, which is painful periods. 

“Patients are told throughout their life that it’s normal to have pain with periods,” Kroft admitted, adding that some healthcare providers sometimes dismiss them. 

Being in middle school and looking around me at other menstruating girls, I noticed not everyone had nine to 13-day-long periods. My pain didn’t seem quite normal then. After two years of dealing with the uncontrollable hurt and trying every natural supplement, nothing was working; the pain just wouldn’t go away. At 15 years old, I had enough and tried birth control, believing that it was the “magical solution” to end my pain – but it wasn’t. Three different birth control brands later, and nothing. Actually, all it did was give me headaches, make me nauseated and sometimes even throw up.

Endometriosis is more than just a painful period. Kroft explains there’s an overlap between the symptoms of endometriosis and other conditions, and it can lead to many more diagnoses, which I was soon to find out.

At the age of 19, I was in and out of the hospital, waiting up to 16 hours to be seen – always in pain and holding my knees to my stomach. I spent months getting misdiagnosed: a Urinary Tract Infection (UTI), Pelvic Inflammatory Disorder (PID), and Pudendal Neuralgia were just some of the ‘guesses.’ One doctor actually gave up and called me a medical mystery.

In only two months, I learnt a whole vocabulary of medical terms that almost made me feel more knowledgeable than watching every season of Grey’s Anatomy.

During a visit to the Emergency Room (ER), I was finally referred to a gynecologist – only to learn that the waitlist at Women’s College Hospital was two years. That meant my life would’ve been put on pause for that long. To go anywhere, I had to walk with an electronic heating pad that vibrates to help ease the pain quite honestly sounding like a vibrator, making me feel embarrassed.

I was waiting to go on an exchange in Spain, and my health was getting in the way. I had dreams of travelling, drinking sangria, and putting to use the three years of Spanish I had learned throughout university. Most young adults like me would dream of a vacation, money, or a decent love life. My dream? To finally live a “normal” life. 

I couldn’t afford to give up on that dream, so I found a gynecologist in my hometown of Ottawa who saw me within a few months.

Arriving at the office felt unreal, like there was finally hope. After explaining my symptoms to the gynecologist, she performed a PAP test (a metal tool used to screen for cancer, inflammation, or infections) and clinically diagnosed me with endometriosis.

She explained that it’s a chronic inflammatory, immune-hormonal condition, putting my body in constant fight-or-flight mode. I knew about the condition beforehand because my mom was surgically diagnosed and went through a laparoscopy – a minimally invasive procedure that uses a thin, camera-equipped tube to examine or treat pelvic and abdominal organs.

I was thankful I didn’t need a laparoscopy like my mom had to undergo due to the shift to clinically diagnosing patients for endometriosis in Canada. “[Laparoscopic surgical diagnosis] puts the patient at risk of needing a surgery, with risks, recovery time needed and potential complications during surgery,” Kroft explained. “Even if we go in surgically and we confirm endometriosis and we remove all of it, the endometriosis can grow back over time.” 

Despite my prior knowledge of endometriosis, I never could have guessed the extent of challenges I’d have to face until I lived it. I was scared of staying in pain on a daily basis. And this might be worrying too far ahead, but what about kids? I know 30 per cent of women living with endometriosis are infertile, so what if I’m part of that statistic? I know adoption and surrogacy exist, and I’ve always wanted to adopt a child, but I never thought that I might not even be able to have a kid of my own.

Being told I had endometriosis felt like forfeiting my life to the condition. It was as if my life was my illness’ to live, and not my own. But, I had to remember that I was lucky my diagnosis was even found as early as it was, because the Endometriosis Network of Canada reveals that it takes, on average, five years (sometimes longer) for a woman to be diagnosed.

It doesn’t help though, knowing how underfunded in research and resources the condition has. Kroft explains endometriosis is classified as a “benign disease” since it won’t kill someone, but it can invade other organs like the bladder, bowel, block the ureter or cause kidney damage, even affect the lungs. “It significantly interferes with quality of life… but we know that a lot of diseases that only affect women are alternately funded and even the surgeons… are remunerated less for similar procedures,” Kroft said.  

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My gynecologist tried different ways to help control my symptoms. The first one was inserting Nexplanon — a birth control that’s a progestin-based implant, rather than estrogen, which is known to be harmful, driving inflammation and pain for those with endometriosis.

The implant’s insertion alone was painful. I’m not sure if the local anesthetic hadn’t kicked in yet or if the pain was just unbearable, but I passed out.

The Nexplanon insertion left me a scar – and a permanent reminder of that moment. But it wasn’t all bad. Slowly but surely, I started feeling better. Soon enough, my period disappeared. After a panicked phone call to my gynecologist, I learnt losing your period is a possible side effect. It made me feel better, yes, but almost made me feel like less of a woman for not being able to relate to other women anymore and not needing to carry any pads or tampons around.

Kroft explained medical therapy is the best alternative to laparoscopic surgery, and medication like I’ve been taking can sometimes stop someone’s period and help manage symptoms. 

The logic behind it is, “Whatever endometriosis that’s there isn’t being inflamed and causing pain because the patient doesn’t get a period. Theoretically, we don’t know why endometriosis forms, but we think part of it has to do with having a period… If the period stops, theoretically, it may prevent new endometriosis from growing and from worsening,” Kroft said. 

Medications of this sort temporarily stops the period and it keeps the lining thin. Kroft continues, “It’s totally healthy, it’s reversible, and for patients with endometriosis, we think it actually helps the current symptoms and theoretically prevents things like chronic pain from fertility worsening and from the endometriosis overall worsening.”

For me though, symptoms didn’t vanish. I still experience pain during sex. I can be vulnerable and ask a partner to stop, or hope for the best. Often, I get excruciating pain that forces me to stop within seconds or minutes. Endometriosis caused me dyspareunia – pain during sex, interrupting my sex life and making me fear a partner might leave as a result.

Kroft explains people living with endometriosis usually experience one of the four D’s, being dysmenorrhea, dyspareunia, dyscrasia or dysuria. 

To help, my gynecologist prescribed a progestin medication: two mg of dienogest meant to suppress hormones and shrink endometrial tissue. We’ll see how that experience goes.

I feel like a lab rat testing out multiple kinds of medications. Whether or not they work for endometriosis, this condition has led me to many other diagnoses, and I joke that I collect conditions like Pokémon. That’s at least how I deal with my pain now – with humour.

I got diagnosed with Interstitial Cystitis (IC), otherwise known as painful bladder syndrome, a bladder condition causing constant bladder pain, pressure, a constant urge to urinate, and pelvic pain. I never knew how this condition came to be, but I recently learned through Ditto’s Instagram post, a company founded by Nutrition Scientist Alice Neuro, that women living with endometriosis are 16 times more likely to get diagnosed with IC.

The combination of IC and endometriosis even has a specific name: “the Evil Twins” – fitting for the tremendous pain I’m constantly in. It consists of both diagnoses with overlapping symptoms like severe pelvic pain, frequency, and painful intercourse.

Sometimes, the pain is so horrible that I need to pop an opioid – a controversial topic, but necessary for me to get on with my day. My first time taking it, I had tears streaming down my face as I was on the bathroom floor holding my stomach, unable to move. I always heard of addiction to opioids and dreaded taking them, but I knew I had no choice if I wanted to feel better. Thankfully, I’m not addicted, but needing to choose between relying on pills or always being in pain isn’t the most fun “normal” to have.

I know the proper term is “living” with endometriosis or Interstitial Cystitis, but personally, I’m not merely “living with” the Evil Twins; I am suffering.

But that’s not all. I also have an iron deficiency, which is six times more likely to occur in tandem with endometriosis according to Ditto.

These physical problems have extended to my mental health. With so much daily pain and myriad limitations in life from diet and multiple flare-ups, I was also diagnosed with depression. I took antidepressant medication for a while, but had to stop because it numbed me too much. 

Kroft also shared that any chronic condition can lead to a higher risk of depression anxiety because of the implications of living with chronic pain.

​From a difficult journey to getting diagnosed (on which I had to self-advocate, research, and be my own caregiver), to finally knowing my medical condition, my story is just one of many. March is Endometriosis Awareness Month, and it’s important to remember from The Endometriosis Network Canada that at least one in ten girls, women, and gender-diverse people live with endometriosis. This could be someone’s reality right beside you.