I stared cluelessly at the gynaecologist in front of me. “Chronic means you’ll have it forever,” my mother explained as the practitioner spewed complicated medical jargon at me far faster than I could hope to comprehend.

By this point, I had spent months waiting for various medical appointments – a virtue of the Canadian healthcare system – and wondering what was wrong with me. The all-consuming pain, crippling nausea, and inability to use tampons was a far cry from what a menstrual cycle should look like; yet it had taken almost four years for my suffering to warrant medical investigation.

Others adapted well to their introductions to womanhood, quickly learning how to manage pain, use tampons, and keep their hormones regulated, I was reduced to a pained mess for a couple of days each month, spending my time under hot pads at temperatures that left burns across my skin and attempting unsuccessfully to regulate overwhelming pain with over-the-counter ibuprofen.

The first time I experienced the full extent of my condition was during a family vacation between sixth and seventh grade. As we boarded the cruise ship, my second-ever period cycle started, triggering the same pain and nausea that came with the first. A far worse experience was just on the horizon.

My little sister – about ten at the time – was a keen swimmer and extremely excited to experience the ship’s water park. Despite the newness of my situation, I was not in the business of denying a ten-year-old her favourite pastime, so I purchased tampons and attempted to use them.

It quickly became apparent that it was nowhere near as easy as the YouTube videos described it – at least for me. It was the most painful thing I had experienced to date. Nevertheless, I persisted, enduring the pain for almost an hour each day on the ship as I tried to do something that, in hindsight, was evidently a horrible idea. Each attempt was filled with screaming, crying, and pain while my mother assured me that tampons were difficult and I just had to ‘get it right’.

After a year of adamant refusal, I once again tried to use a tampon, when I was a counsellor-in-training at a girl guide camp, tasked with bringing a group of young girls swimming at a local pool. The pain was worse, akin to the feeling of tearing flesh. I rushed out of the restrooms and told my superiors I had a headache. It took almost five hours for the pain to recede, most of which was spent quietly sobbing on the aquatic centre’s lobby bench.

Throughout the following years, I experienced similar pain on the rare occurrence I used tampons but each period was filled with overwhelming pain and nausea. I continued on because sex education class told me that periods were supposed to hurt, and no one ever educated us about menstrual health.

Eventually, after numerous unbearable periods and swimming experiences, I spoke to my family doctor. After a quick examination, he proclaimed I had an issue with my hymen and referred me to a gynaecologist.

Due to exceptionally long wait times for non-emergency care in the Canadian healthcare system, it took months before I was seen by a specialist (in part because, due to embarrassment and stigma, I insisted on a female practitioner). The gynaecologist, after an examination, decided I had a nerve pain condition and potential endometriosis and prescribed me stronger pain and nausea medications and a topical numbing ointment.

That wasn’t it. Three months later, while on a walk, I experienced the beginnings of the pain and nausea I had grown used to so I took my medication and continued expecting that to be the end of it. It wasn’t – the next few hours were the most painful of my life. The pain, nausea, and discomfort became so overwhelming that I couldn’t walk the remaining three kilometres home and had to call my father to pick me up during the workday.

When I returned home, it was all-encompassing. At that point, I could only experience the pain. I couldn’t think. I couldn’t feel. I couldn’t do anything besides futile attempts to ease the pain.

My parents called the gynaecologist, who permitted me to take another dose of medication and referred me to a further specialised professional. If my pain had lasted longer that day, my parents would have called for an ambulance.

After more painful months of waiting, yet another doctor confirmed my diagnosis of a condition called endometriosis as well as a ‘longitudinal vaginal septum’ rather than the nerve condition we originally believed. I then received consent forms for surgery – I am still waiting for it.

I have given speeches to hundreds of people, aced math finals, and cried in bathroom stalls during class time because until something drastic happened and the pain became too much, no one would believe that period cramps warranted special treatment.

After extensive research and self-education, I realised I wasn’t alone – an estimated 10% of women suffer from endometriosis, and many others experience other painful conditions like polycystic ovary syndrome.

Young girls like me will continue to suffer because periods are taboo and we are told period cramps are supposed to hurt. Our experiences are instead chalked up to female sensitivities, low pain tolerance, and the joys of womanhood.

Even today, I refer to my condition as ‘a chronic illness’ rather than specifically endometriosis – because people take the former more seriously, even though endometriosis is simply a more specific term.

This is just one of many manifestations of systemic misogyny within the medical field and societal attitudes towards women’s health.

A phenomenon that made me wonder if a highly painful yet externally invisible disease impacted millions of men globally, would people know about it? Would there be funding for research, awareness campaigns, and education for young boys, or would they be ignored too? Would these men be warned or left to navigate the reality of silent pain and chronic illness that society won’t discuss?

Throughout my journey to diagnosis, I talked to numerous medical professionals and concluded that, yes, we would know about it.

Research efforts have been focused on men for decades. Our culture is male-centric, so topics important to men are seen to be of more significance. If endometriosis was a male condition, diagnosis would likely be easier, and, subsequently, treatment more accessible.

I asked Dr. Janet Werker how medical misogyny affects women. “The consequences are enormous,” she said. “From a decline in a woman’s self-esteem to self-doubt, and possibly even long-term illness or death if symptoms are minimised, ignored, or not treated.”

Adding that “it can make a woman less likely to be in touch with her body or avoid seeing health care professionals.”

Cardiovascular specialist Jacqueline Lum explained the effects in her field of expertise. As women present different symptoms to men, their pain is more likely to be dismissed or misdiagnosed due to a lack of research and awareness and underlined that numerous drug trials, even recent ones, had majority-male study participants, meaning their impact on women isn’t as well understood.

Lum highlighted that women with mental health conditions, indigenous people, LGBTQ+ individuals, and racially diverse individuals were likely to face additional stigma.

Dr. Werker and Ms. Lum both expressed that addressing this bias requires a multi-pronged approach centred on awareness, education, representation, and destigmatisation.

I would like to see that materialising as education for young girls, covering conditions that can influence menstrual health and how to express their needs and concerns to medical professionals.

Future generations of girls deserve the education, vocabulary, and tools to advocate for themselves in a way many of us haven’t been able to in the past.

I sign consent forms for surgery and wonder how things would have been different if sex education classes taught me about menstrual health conditions, spoken up or talked to someone sooner. Would I have received a diagnosis sooner? Would those painful memories have been happy ones? Unfortunately, those aren’t questions I can answer for myself – but I can try for others.

The name of Jacqueline Lum was spelt incorrectly in the original version of this article. This was amended on November 1, 2023.