If an apple a day truly kept the doctor away, I think I’d be in the business of purchasing an orchard. 

As I think of how to open this article, I’m sitting in a place where I’ve found myself quite regularly the past four years: the waiting room.  

The clinic, the emergency department, the specialist’s office—the more places I’ve gone the less distinct each experience feels. They all blur into one long vision of disappointment, confusion, and frustration. Yet, few women would be surprised to learn that before this four-year healthcare haze, I knew roughly how this story would go. 

So, where did it all begin?  

When I was 15, I was home watching TV with my mom—a typical high school weeknight. We both enjoy a dose of trashy reality television, but that night’s selection on TLC presented a show I’d never seen before. 

For the hour that we tuned into My Big Fat Fabulous Life, I heard the program’s central figure, Whitney Way Thore, speak about being diagnosed with PCOS—Poly-Cystic Ovarian Syndrome. 

In the episode, she recounted experiencing concerning symptoms in her early years of college: rapid, unexpected weight gain, irregular/absent menstrual cycles, issues related to skin and body hair, and an onset of anxious/depressive episodes. With no reason to think any more of what I had just learned, that night I logged her testimony in the back of my mind as I moved through another year of high school.

Three years later—now in university—I found myself remembering Whitney’s story in vivid detail, because I was living it. Like Whitney, I woke up one morning in my dorm to find myself in a completely different body. Although everyone can anticipate some shift in identity or physicality during a new phase of life, nothing about how I conducted myself that year could have predicted this rapid transformation. 

I was disoriented, but above all, I felt at a loss to be so estranged from my 15-year-old self. Something was certainly wrong. What I knew intuitively at the time to be true, and what I had spent the latter half of my teenage years trying to explain to medical professionals, was the unmistakable impact of undiagnosed, untreated PCOS.  

So, why PCOS and why now?  

September is recognized internationally as PCOS awareness month. From my story, it should be easy to understand the significance of adequate representation regarding any social/medical/political issues. Without the hormonal health anecdotes from a reality television star, I wouldn’t have felt the confidence at 16, 17, or 18 years-old to advocate so strongly for myself in front of numerous physicians who attempted to convince me that I was too young or naive to understand my health and what I was experiencing. 

I feel it appropriate then, as a person with PCOS and equally as a Sociology student and member of Trent’s academic community, to not only share this piece of my life, but to position PCOS as a key issue of health justice for women and gender minorities.  

I’ll begin with the basics. PCOS (Poly-Cystic Ovarian Syndrome) is a hormonal and metabolic syndrome that affects roughly one in 10 people with uteruses globally; that is approximately 116 million individuals. It is more likely than not that someone in your life has PCOS, whether diagnosed or undiagnosed. 

Further, contrary to what the title of the condition implies, one does not need to have cysts on their ovaries to be diagnosed with PCOS. Since PCOS is a syndrome, diagnosis is primarily based on a set of interrelated symptoms. These symptoms commonly include, but are not limited to:  

Rapid, unexpected weight gain. 

Irregular/absent menstrual cycles  

Hirsutism and/or thinning hair.  

Hormonal acne. 

Skin discolouration, skin tags.  

Dysregulated emotions and mood—bouts of anxiety and/or depression. 

Follicles (‘cysts’) on one or both ovaries  

With this diagnostic framing in mind, now comes the predicament of treatment. A main issue (which could demand its own article) is the gynaecological standard of birth control prescription for PCOS. Clinical evidence has suggested oral contraceptives (OCPs) to be ineffective for PCOS because they do not address the root cause of hormonal imbalances, nor do they improve metabolic function, a key driver of symptoms.

Additionally, medical scholars are increasingly learning how ‘the pill’ can be detrimental to the long-term reproductive, mental, and hormonal health of the body of anyone who takes it, whether they have PCOS or not.

To be clear, it should be acknowledged that OCPs are an essential resource for people across Canada—especially in an era of uncertainty around bodily autonomy rights—but, when it comes to PCOS, the efficacy of birth control is tantamount to putting duct tape over a pothole. 

Outdated medical treatments are one fraction of the practices causing our suffering (the PCOS, if you will) behind PCOS. A lack of attention to PCOS-associated mental health risks, inadequate in-office resources for how patients can approach lifestyle changes or supplement/medicine usage, along with a general lacking empathy for PCOS patients from physicians are among these other practices. 

Notably as well, when left unmanaged, those with PCOS are at heightened risk of developing co-morbid conditions like diabetes, cardiovascular diseases, sleep apnea, obesity, and not to mention, endometrial cancer. To double-down, within many of these conditions there already exists a gender health gap in terms of medical knowledge, diagnosis, or treatment—I’d like to coin this as an ‘intersectional knockout’! ‍

Evidently, this is not just a matter of practice, or even health politics. This is an epidemic of pain, suffering, and the life or death of women and gender minorities. 

I can attest that PCOS has caused turmoil in my late teens (and now early 20s) that is near impossible to describe; from how I view my gender, how I eat, sleep, and conduct my days, to the existential thought of what life in my body could be like in 10 or 15 years—PCOS has changed it all. 

Now come the most crucial questions. So what? What can I do?  

Here’s what I would propose:  

1. Vote to keep socialized medicine well-funded! On average, achieving a PCOS diagnosis already takes more than two years.. This wait expectancy can only increase in the wake of family doctor shortages and sneaky government moves toward healthcare privatization.  

2. Believe the people in your life who share their experiences of symptoms with you.  

3. Similarly, don’t pretend to know the story of other people’s bodies. Keep your comments to yourself, even if you think them to be ‘complimentary.’ Bodies should be neutral and not exist for judgment, whether positive or negative. 

4. Read, share, talk, educate! Here’s my rule of the three C’s:  some text
   1. Consume: read, listen, and watch – whether it be content from everyday people with PCOS or scholars leading the charge on work in this area, there are so many accessible formats to gain new knowledge. 
   2. Consider: think about why the messages of PCOS, hormonal health, and reproductive justice are relevant to you and your life. 
   3. Converse: start this conversation with others, whether that be friends, family, or peers—while mere allyship is good, action is better.

For any Trent students looking to make good on action item four, I have an opportunity for you. I’m thrilled as a Trent University Sociology Collective (TUSC) executive to announce a September round-table event honouring this topic of PCOS and reproductive/hormonal health. A date and location are pending—follow @tusc.trent on Instagram and keep up with our website (tusc.ca) for this information and all things TUSC! 

To end, I’d like to reassert that being vulnerable about our experiences is what creates productive conversation — a precursor to change. I never imagined when first diagnosed that I’d write or speak in a public capacity about PCOS; these are unnerving tasks, but it’s far scarier to consider the absence of impact which exists when people—be it me, or anyone else—feel their stories can’t be learned from or are unimportant.

I’ll also re-emphasize that insufficient public education about PCOS and improper treatment for the syndrome does not lay at the feet of only a few doctors. This is a systemic issue of clinical practice, lacking medical research on the female body, and poor public school reproductive health curricula. In other words, this is not just a case of a few bad apples—I think the tree is rotten right to the core.