My experience as a woman with polycystic ovarian syndrome (PCOS) has opened my eyes to the lack of empathy and research dedicated to women’s health.
Gynecologists would always throw the same remedies at me: weight loss, birth control, or maybe nothing at all.
“You’re just hormonal,” or “you’re just depressed.”
I was only 14.
And just like everyone else, I caved in. I’ve been on birth control for the past 6 years of my life and my body is always on my mind. As I found myself leaving clinic appointments with more and more distress, I got desperate, and started to look towards online forums (shoutout Reddit) that recommended more treatments than you could ever imagine: spearmint tea, inositol, carb abstinence, diabetic medication… so many options it made my head spin. My web search history would be (and regrettably sometimes is) full of questions like “how do I get rid of PCOS belly?” or “what’s the best diet for PCOS?” and any other shout of help into the sea of endless Google hits. PCOS is the most common metabolic disorder among women of reproductive age with a global prevalence of 5% to 26% (depending on the diagnostic criteria used), and yet why is it still so under-researched, misunderstood, and misrepresented? In this article, we’ll dive into a brief history of women’s health, PCOS, and discuss its current understanding and implications today.
Women’s health is a field in healthcare that has been traditionally and notoriously excluded from clinical trials. It was only in 1997 that Canada issued the Health Canada Guidance Document on Inclusion of Women in Clinical Trials, in which researchers were now being encouraged to include women in relevant studies. This was only less than 30 years ago. The exclusion of women in clinical trials, and the actual encouragement of female exclusion due to their possible confounding factors (ex. menstrual cycle, pregnancy), was dismissed as scientists and researchers highlighted the major gaps of healthcare knowledge on women’s health and their possible devastating effects. Such devastating effects were highlighted by the thalidomide tragedy that swept the globe between 1957 and 1962, in which estimates say over 10,000 babies were affected by the drug worldwide through various impairments such as limb difference, sensory losses, facial paralysis, and impact to internal organs. This was due to a complete lack of testing of thalidomide in pregnant women. Yet despite the lack of testing and the U.S Food and Drug Administration’s (FDA) refusal to approve thalidomide because of its potential effects of neuropathy in adults, the drug was still approved by the Government of Canada.
Furthermore, a report in 2024 found that less than 6% of Canadian health research funding goes towards women’s health, despite the mandated inclusion of gender as a criteria for awarding grants since 2010. These examples demonstrate that despite numerous calls to improve women’s health research, it is still not being addressed as it needs to be. Such lack of research and understanding is echoed today through various health facts that seemingly attribute to both men and women, but are actually facts deducted from research involving only men! Among these facts is the classic heart attack sign of chest pain, which although is found in both men and women, men are more prone to experiencing severe chest pain while women may not experience chest discomfort at all! Women also more commonly present with atypical symptoms such as extreme fatigue, nausea and vomiting, indigestion, and fainting. But the mainstream narrative and common knowledge don’t reflect this difference in information.
PCOS is a complex disorder with strong genetic and environmental factors affecting insulin resistance, steroid hormone biosynthesis, and dysregulation in the negative feedback pathways of hormones. According to twin studies, 70% of PCOS’s pathophysiology is attributable to genetics. PCOS increases your risk for multiple co-morbidities including depression, anxiety, type 2 diabetes, obesity, cardiovascular disease, and more. Possible symptoms of PCOS include absent and/or unpredictable periods, as well as long and/or painful periods, infertility, and hyperandrogenism characterized by oily acne-prone skin, excessive hair growth, and/or male-patterned hair loss. Diagnosis of PCOS is based on achieving at least 2 out of 3 criteria: irregular or missed periods, signs of hyperandrogenism (ex. acne, excessive hair growth, or blood level values), and polycystic appearance of ovaries—including enlarged ovaries, presence of cysts, and more. Although endometriosis is another common condition causing infertility and possibly cysts, it differs from PCOS in that it’s a condition where the same tissue that lines your uterus is also found in nearby areas such as the ovaries, vagina, and fallopian tubes.
PCOS is often ignored or dismissed unless you’re in reproductive age and actively want children. I’ve been told to come back to a gynecologist after I wanted babies and that birth control was the only method in the meantime. Although I was not completely targeted with the “weight loss” spiel, as I have a normal BMI, the significance of weight loss and nutrition was continuously pushed down my throat. At the young ages of 14 and 15, diet and body image were always at the fore-front of my mind. I’m not saying that exercise and nutrition don’t help, as they can definitely aid in supporting a healthy lifestyle. Despite this, however, it’s important to note the direction of correlation: did the PCOS cause the obesity or did the obesity (and its associated pathophysiology) cause the PCOS? There are very different approaches to tackling either or, highlighting the perhaps unrealistic treatment recommendation of simply “weight loss.” Perhaps the majority of women with PCOS are overweight due to the genetic underpinnings of their condition and its concluding impact on affect, cognition, and behaviors. Despite this, doctors are quick to push that weight loss is the cure-all of PCOS, even though weight loss itself isn’t even a single treatment, but rather constitutes multimodal interventions (ex. exercise, diet, medication, behavioral therapy, etc.).
The important question is, when will women across the world (~50% of the global population) get the proper healthcare they deserve, with research that represents who they are? And when will male doctors and researchers stop dominating the field of women’s health? These questions have yet to be answered, and therefore merit the continuing advocacy of women’s health in the broader context of gender equity. As decades of research that exclusively includes men as their sample population continues to accumulate, it’s time for healthcare research to catch up with women’s health.
No one deserves to be discriminated for something they can’t control, such as their sex.