There is a huge gap between the knowledge about Polycystic Ovary Syndrome (PCOS) and the global need for awareness! PCOS is one of the most common hormonal disorders affecting women worldwide. Yet it remains widely misunderstood and underrepresented in educational curricula. I was diagnosed with PCOS at age 17. It was a time when I was still learning about my body and its functions.

At age 32, I received a second diagnosis—cystic breasts, a condition also linked to hormone imbalances. These two conditions, though affecting different parts of my reproductive health, share a common thread: the disruption of hormonal balance in the body.

My personal journey has made me keenly aware of the critical need for better education and awareness about these issues. It is essential for women of all backgrounds, especially women of color, to join together to raise awareness of PCOS. It is also imperative to foster an understanding of other reproductive health issues.

The Gap in Education: My Experience and Beyond

Growing up, my biology and health classes focused almost exclusively on the reproductive system as a general concept. We were taught about menstruation, fertility, and pregnancy. There was little to no mention of the conditions that can impair or complicate these processes, such as PCOS. Even though PCOS affects approximately 1 in 10 women of childbearing age, it was never discussed in my educational journey.

Like many women, I had to navigate my understanding of PCOS through personal experience rather than through institutional support. It was only later in life, when I was diagnosed with cystic breasts in 2022, that I began connecting the dots between hormone imbalances and reproductive health issues.

The cysts in my breasts, linked to fluctuating hormone levels, mirrored the complexities that women with PCOS face. I realized how deeply interconnected various reproductive health disorders can be and how often they are overlooked or dismissed, especially in black women.

Educating about PCOS in School is Key to Awareness

Teaching young women about PCOS  in schools can provide them with the knowledge to understand their bodies and recognize early symptoms. In middle school, I could only recall individuals from the health department distributing sanitary pads and tampons to young women. I do not remember them discussing irregular or missed periods and their meaning. Certainly, early education can lead to quicker diagnoses and help avoid the years of confusion many women face, like me, before being properly diagnosed. 

Here are some reasons for the need for awareness of PCOS:

• PCOS affects up to 10% of women of reproductive age.
• Early education allows young women to recognize symptoms like irregular periods, weight gain, or excessive acne.
• It empowers them to seek medical help and advocate for themselves.

Understanding PCOS: Causes, Symptoms, and Delays in Diagnosis

1. What is PCOS?

Polycystic Ovary Syndrome (PCOS) is a complex hormonal condition that affects women differently. It is characterized by irregular menstrual cycles, elevated levels of androgens (male hormones), and polycystic ovaries (not always).

2. Common Symptoms of PCOS

Women with PCOS often experience symptoms such as acne, excessive hair growth (hirsutism), weight gain, and fertility issues. The severity of these symptoms can vary widely among individuals.

3. Insulin Resistance and PCOS

Many studies show that PCOS is frequently accompanied by insulin resistance, a condition in which the body’s cells become less responsive to insulin. This increases the risk of developing type 2 diabetes and heart disease over time.

4. Causes of PCOS

While the exact cause of PCOS is still unknown, research suggests that a combination of genetic and environmental factors contribute to its development. Women with a family history of PCOS are at higher risk, but lifestyle factors such as diet, exercise, and stress can worsen the symptoms.

5. Delays in PCOS Diagnosis

Despite being common, many women face delays in receiving a PCOS diagnosis. On average, it takes two years for a woman to be diagnosed after experiencing symptoms. This highlights the need for greater awareness and improved healthcare practices around PCOS.

PCOS and Black Women: A Silent Crisis

For black women, the journey with PCOS can be particularly challenging. Research has shown that black women are often diagnosed with PCOS at lower rates than white women. This is not because they are less likely to have the condition but due to systemic healthcare disparities. Black women are also more likely to suffer from severe PCOS symptoms such as hirsutism (excessive hair growth), obesity, and insulin resistance, which can worsen the overall impact of the condition on their health.

Moreover, black women face higher risks of developing other reproductive health issues that often intersect with PCOS. Fibroids, for example, are benign tumors that grow in the uterus and are more common in black women than in women of other races. Black women are also at an increased risk of cystic breasts, as I experienced. These conditions are all linked to hormone imbalances that make managing PCOS even more complicated.

The healthcare system, unfortunately, often overlooks or dismisses the symptoms of black women, leading to delayed diagnoses or inappropriate treatments. This disparity not only exacerbates the physical symptoms of PCOS but can also have significant mental health impacts. In fact, black women are more vulnerable to depression and anxiety due to a combination of societal stressors and untreated health conditions.

The Hormonal Link: My Diagnosis of Cystic Breasts

In 2022, I was diagnosed with cystic breasts, a condition characterized by fluid-filled sacs that develop in the breast tissue. Similar to PCOS, this condition is linked to hormonal fluctuations, particularly the imbalances in estrogen and progesterone. While the diagnosis was alarming, it provided clarity on the interconnectedness of my hormonal health.

The experience deepened my understanding of how hormone imbalances can manifest in different ways and how reproductive health conditions often overlap.

For women with PCOS, breast health can be another area of concern, as hormonal imbalances affect the entire reproductive system and beyond. As with PCOS, conditions like cystic breasts are often misunderstood, and women may not receive the support they need.

My diagnosis was a wake-up call to prioritize hormonal health and share my experiences with other women who may be silently struggling with similar issues.

The Importance of Raising Awareness and Community Support

As women, we must unite to raise awareness about PCOS and other hormone-related reproductive health conditions. PCOS is not just a condition that affects fertility—it impacts nearly every aspect of a woman’s life, from her physical health to her mental well-being. The need for education, research, and compassionate healthcare for all women, particularly women of color, cannot be overstated.

Raising awareness begins with sharing our stories, speaking openly about our diagnoses, and demanding better care. Too often, women are made to feel as though their symptoms are not valid or important. We must challenge the stigma surrounding reproductive health and insist on being heard.

Additionally, community support is essential. As I have learned through my work with Herbal Harmony, connecting with other women who share similar experiences can be incredibly empowering. Together, we can push for more inclusive healthcare practices that address the unique challenges faced by women with PCOS and related conditions.

Conclusion: A Call for Solidarity

The journey with PCOS is not easy, but it is one that women from all walks of life can navigate more effectively when we stand together. As a black woman diagnosed with both PCOS and cystic breasts, I understand the importance of advocating for my health and supporting others in doing the same.

By raising awareness, sharing experiences, and demanding better healthcare, we can fight against the silence and stigma that often surrounds PCOS and related conditions.

As we continue to educate ourselves and others, we hope for a future where all women, regardless of race or background, receive the care, understanding, and support they deserve!