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I was 18 when I first heard the word “endometriosis”.

 

I remember lying with my face pressed against the cold tiles on my bathroom floor in agony. One arm wrapped around my abdomen, the other aimlessly scrolling on TikTok as a distraction from the previous vomit I had just cried up and nearly fainted, again, from the level of pain my body was experiencing. 

 

I also remember telling myself in the moment that I was just being dramatic, that I needed to stop crying, that it was just a bad period.

 

While I spent my once-a-month “episode” locked in the bathroom the second my period started enduring the worst pain I’ve ever experienced, I decided to search on TikTok “Are bad periods normal?”. The first video under the search flashed a blonde woman with a model of a uterus flashing in red Comic Sans “ENDOMETRIOSIS” across the video. 

 

I didn’t know there was a word for what I had experienced for years, and I didn’t know it wasn’t normal. 

 

From then on, I began to understand the very simple notion that periods should not cause paralysis, blackouts, or intense nausea to the point where getting up from the cold bathroom floor with a cocktail of Midol and Naproxen in your system feels equivalent to climbing Mount Everest. Every period following, I would start to voice my concerns that maybe something was wrong with my mother, who also had never heard of the chronic disease before.

 

Finally, during the end of my first year in university, I went to the ER for what I thought was a burst appendix. Spoiler alert: my appendix is fine, and I was sent home with Advil for some “minor cramps”. 

 

It felt like no one would listen to me, and at the same time, I didn’t have the vocabulary to voice what was going on. My male family doctor simply saw a young woman who happened to have a painful period and left it at that. I was told time and time again that “some people just get bad periods sometimes” after my voice had gone scratchy from crying and my back spasmed out after hours of hunching over under my covers.

 

It wasn’t until months after the ER visit that I saw my female nurse practitioner who heard my concerns and suspected endometriosis and started me on birth control—the only known pain reliever for endometriosis next to constant surgery or a hysterectomy—and my life suddenly seemed enjoyable again.

 

Birth control did make me gain rapid weight and severe acne for the first few months, but I didn’t care at all about any of that. The relief of not having to live every month in survival mode planning around the days you’re going to have to call in sick or miss class because you’ll be otherwise incapacitated was so utterly freeing. Finally getting the help I needed and understanding that my pain was validated and no, I wasn’t just being dramatic, changed my life.

 

When I turned 20, my advocating paid off and my family doctor agreed to refer me to a gynecologist. I remember sitting in his office hearing the words “Without a doubt in my mind, it’s endometriosis” and again, that same feeling I felt when I started managing my pain came over me again: it wasn’t all in my head.

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"I remember lying with my face pressed against the cold tiles on my bathroom floor in agony. One arm wrapped around my abdomen, the other aimlessly scrolling on TikTok as a distraction from the previous vomit I had just cried up and nearly fainted, again, from the level of pain my body was experiencing."​​
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Now, a year later I’m preparing for a laparoscopic surgery to see how far my endo has progressed and as scary as the results could be, I never thought I would get to this place. I never thought anyone would listen to me, I never thought I would feel comfortable talking about my reproductive health on a public forum, and I never realized how common this disease is.

 

1 in 10 women suffer from endometriosis, yet it took me 18 years to even learn that it existed. I was never taught about endo in health class, or its cousin Poly Cystic Ovarian Syndrome (PCOS) in which an estimated 13% of women are diagnosed with an additional 70% of women remaining undiagnosed globally. It became an understanding growing up that sometimes, you just get a bad period and there is nothing you can do about it other than eat ice cream and take an Advil. But as my periods progressed and the pain worsened every month to the point of incapacitation, I still gaslit myself into thinking that I was just “unlucky” with my menstruation. 

 

During my initial research into severe period cramps and possible causes, my mother told me that “your body knows best” and that pain only happens when something is wrong. Such a simple notion, one that would have saved me so many years in pain had I just trusted my body and listened to it.

 

At the end of the day, female reproductive health is under researched and underfunded, which trickles down into the lives of young women and girls who suffer the consequences of a fundamental lack of understanding about their own bodies. Why such a common chronic disease is widely unknown and still to some degree, taboo, is a dangerous fault in our society that can only resolve itself by keeping the conversation going. 

 

Normalizing conversations around pain, periods, and listening to your body is the most important part we can all play to better the stigma around reproductive health to catch problems like mine before they progress and hopefully, before a young girl feels alone in her pain.

 

Remember, your body knows best and it’s your job to listen to it.

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