Source – https://www.queensjournal.ca/
Living with my diagnosis since the age of 15
It was the morning of my Grade 10 science exam when the pain started. Up until that moment in my life, my period pain had always been manageable. On that morning, it became so bad I began to black out.
I still went to my exam only to last 20 minutes before asking to go to the bathroom to throw up. I laid down on the floor, trying to use the cold concrete to rid myself of a sudden hot flash and fainting spell.
I managed to get myself to my teacher’s office. They promptly called my parents, asking them to come and pick me up. I was carried out of the school by the vice-principal and my dad, who was in his police uniform.
I was diagnosed with endometriosis and put on prescribed pain killers.
Endometriosis is a disorder wherein the tissue that usually lines the inside of your uterus grows on the outside. This makes periods incredibly painful—some women with endometriosis have said childbirth causes less pain than their period.
Since I was 15 years old, I have experienced excruciating pain every month. Some are better than others, but I am on bed rest for 30 hours almost every menstruation cycle.
In Grade 8, when all the girls in my class started menstruating, we created a code word to let each other know: it was “bananas.” Because of my endometriosis, I’ve never had the luxury of choosing not to tell people when I am on my period or discreetly using a code word.
Sometimes, in the beginning, I could get away with calling it a medical condition. But every month when the pain worsened I had to instruct those close to me of what to do if I were to faint, what I would be able to stomach eating, and what would happen if I had a muscle spasm and was unable to move my neck. It was through these instructions I often revealed I suffer from endometriosis, or, more simply, extremely painful periods.
I’ve had to disclose this information to past boyfriends very early in relationships, to teachers, friends, and workplaces. Often, I could tell people thought I was oversharing. But I was looking at it as a safety concern, not just for myself, but for the people around me as well. Some people were understanding, but most weren’t.
This isn’t to say they didn’t care. They just didn’t understand.
I was often hit with “I get pain too,” or “the pain can’t be that bad,” or “why didn’t you just call in sick?”
Some of the people with these responses probably do experience period pain, but in most cases, they are still functional during their periods. I am doubled over in bed, crawling around my apartment for two days. The pain sometimes creeps down my legs, and I am unable to stand, or it is so intense that I get hot flashes and then chills back and forth for hours.
I would’ve loved to have been able to call in to work sick every time I was on my period, but I would’ve been calling in two to three days a month, hoping I was lucky enough my period wouldn’t start when I was scheduled to work. As any girl knows, you can try to predict when your period is coming, but you can never be 100 per cent certain. Not to mention calling in sick that often can make it very hard to keep a job, especially if they don’t understand your situation.
After my diagnosis, my biggest fear became fainting in public. It made me even more conscious of the pain, of how many people were watching me cry on the subway, clenching my backpack and trying to use it as a makeshift heating pad to calm my muscles.
I cannot count the number of times strangers have walked me home or have made me wait to drive anywhere because the pain was so intense that I started to blackout.
Every month I feel like an inconvenience to the world. A little dramatic, but if you’re in my inner circle of friends and family, I rely on your help to keep me alive. Last month, my roommates had to bring me food and water while I sat in bed and tried to sleep away the pain. My mother has always been my saving grace—she went through the same thing—and when I’m able to be home during my period she always takes care of me.
The worst part of all of this is when people try and compare their pain to mine or dismiss me because it’s “just a period.” To those people, I hope you and your loved ones never have to experience endometriosis. It feels like living hell for two to three days every month.
When I was 21, one of my managers at work convinced me to get on a very long waitlist to see a gynecologist in Toronto. I knew that no matter how much I pleaded, they weren’t going to remove everything. Still, there had to be other options.
Ten months later, I had my first appointment. Ten months of pain without any solution.
My gynecologist and I did an initial consultation. We discussed the possibility of birth control, but that option was quickly ruled out as I get frequent migraines. Taking birth control with migraines increases one’s risk for a stroke.
A year of other tests to ensure the rest of my body was functioning correctly went by. I had a colonoscopy, a heart exam, did massage therapy, acupuncture, and Chinese cupping, but nothing yielded positive results or showed other internal issues.
Finally, after two years, we settled on the option of an IUD. It took another six months to get everything in order and book a space at the hospital. They wanted to do a full scope inside to ensure that the rest of my uterus and ovaries looked okay. The only way to do that was to be put under.
My surgery was moved due to COVID-19, and I finally had the IUD inserted last week. I am praying this option works and minimizes the pain.
But even with treatment, this is a condition that affects every aspect of my life. I have to keep my life in order every day of the month, or my pain is so much worse on my period. I have to plan each month around my cycle and carefully schedule activities when I know the pain is due.
My life has changed a lot since I was 15. I have moved to three different cities, completed my undergrad, held a variety of jobs, and am now in my Masters. The only thing that has remained constant is the endometriosis.
Endometriosis pain isn’t normal period pain and shouldn’t be compared as such.