Deja’s Story: A Decade of PCOS Discovery

At just 29, Deja has already spent more than a decade navigating life with polycystic ovary syndrome (PCOS). Diagnosed in middle school, her journey began with delayed periods and difficulty managing her weight.

Deja’s early experience was one similar to many women diagnosed with PCOS. "I wasn’t given much information,” she recalls. “I recently started managing my symptoms from my own research,” noting the current lack of available information even as an adult years later. It is estimated that up to 70% of women with PCOS remain undiagnosed, leaving us to wonder why the condition is not more commonly discussed within the healthcare system and otherwise.

While PCOS is a common hormonal disorder affecting millions of women worldwide, many like Deja are left in the dark about how to manage its effects early on. The symptoms—ranging from irregular periods to weight gain and hormonal imbalances—are often written off as something young girls will "grow out of" or learn to manage on their own.

Like many other conditions, Black women are disproportionately affected PCOS. Even more pressing is the concern that Black women with PCOS have higher risk factors for heart disease, diabetes, and stroke compared with white women, according to a study presented virtually at ENDO 2021, the Endocrine Society’s annual meeting. For Black women, this lack of guidance can mean a lifetime of inconvenience, and worse, comorbidity—when two or more diseases occur in the same person at the same time or one after the other—opening a pandora’s box of more issues.

Many doctors and medical professionals emphasize weight loss as a key part of PCOS management. Deja found this advice to be overly simplistic, and at Uterine Care Collaborative, we agree. "Doctors just tell us to lose weight, but they don’t help with a plan on how to," she shares. In the absence of robust medical support, Deja turned to her own research to understand and manage her symptoms. "I have been taking various vitamins and working on my diet," she says. “Keeping my body moving has helped physically and emotionally.”

PCOS isn’t just a physical condition—it also has a profound impact on emotional well-being. For Deja, the emotional ups and downs are something she’s only recently started to acknowledge. "Lately, I’ve realized that it does affect my mood," she admits. According to a 2022 study, the hormonal imbalances caused by PCOS can contribute to heightened feelings of anxiety, depression, and emotional distress. Recognizing the connection between a uterine health condition and mental health can be a powerful step for women on the journey toward holistic management.

Despite emotional challenges, Deja hasn’t yet fully opened up about her journey with PCOS. "I haven’t actually talked about PCOS with family or friends," she shares. The silence surrounding the condition reflects a broader issue many women face when it comes to discussing womb-related health concerns.

How do you discuss a condition you don’t fully understand yourself?

When is the appropriate time to discuss such an intimate condition? 

Community and conversation can be found in unexpected places. There is an emerging demographic of women opening up about their experiences with PCOS on TikTok and even male counterparts who share their support of women facing the condition. "TikTok and Google have been helpful,” Deja shares. In an age of social media and online forums, many women with health conditions turn to digital spaces to find the understanding and solidarity they may not get from traditional medical or familial networks.

Reflecting on her decade-long journey with PCOS, Deja sees clear areas where the medical community can improve. "Doctors should provide more information and differentiated treatment plans," she stresses. For women who are newly diagnosed and navigating the healthcare system, Deja advises, "Do your research and don’t let doctors blow over your symptoms." Self-education and advocacy can have a profound impact on managing chronic conditions like PCOS and navigating the healthcare system.

As Deja continues her health journey, she remains focused on achieving a healthier weight and gaining better control over her symptoms. The road ahead is still unfolding, but over the last decade, Deja has already proven her strength by forging a path to better health on her own.