Polycystic Ovary Syndrome (PCOS)

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FACT: Black women are disproportionately affected by polycystic ovary syndrome (PCOS). According to the National Institute of Health (NIH), approximately 5 million women of reproductive age in the United States are affected by this syndrome.

Polycystic Ovary Syndrome (PCOS)

PCOS affects women of color more frequently and severely.

A family history may make you more susceptible to developing PCOS, but it does not guarantee you will get the disease (Schlanger, MD, 2021).

There are current studies taking place that are evaluating PCOS and different ways to reduce its symptoms.

What is Polycystic Ovary Syndrome (PCOS)?

Polycystic ovary syndrome, also called PCOS, is a health condition in which a woman’s body produces an abnormal amount of androgens. Androgens are a group of male-classified sex hormones that help start puberty and play a role in reproductive health and body development (Cleveland Clinic). Although all genders make androgens, males produce more of them. Androgens include testosterone, dehydroepiandrosterone (DHEA), and androstenedione.

PCOS is a common disease of the endocrine and reproductive system that affects adolescent girls and adult women. Although 1 in 10 women of childbearing age are affected by this condition, PCOS is still largely misunderstood and underdiagnosed. 

The lack of understanding of PCOS and lack of consistency in symptoms are what often leads to a delay in diagnosis. Even its name is misleading; polycystic ovary syndrome was given its name because most women with this condition grow small cysts on their ovaries.  A polycystic ovary contains small fluid-filled sacs that are commonly known as cysts. Despite its name, not all women with PCOS develop ovarian cysts and women with ovarian cysts may not have PCOS. 

Research shows that PCOS is caused by an excess amount of androgen in a woman's body. In women, androgens are produced in the ovaries, adrenal glands, and fat cells. Though these hormones are naturally found in women, they are usually found in small amounts. Overproduction of androgens can lead to the development of male characteristics in women and cause symptoms such as irregular or infrequent periods, hirsutism (excess body hair, including the upper lip, chin, chest, stomach, and back), or difficulty becoming pregnant.

PCOS does not have a clear pattern of genetic inheritance, although women with this condition may have a close family history of PCOS. According to Elizabeth Morrill, RN (2022), about 20-40% of women with PCOS have an affected mother or sister. The increased familial risk is likely due in part to both  shared genetic and external factors such as exposure to endocrine-disrupting chemicals (EDCs).

PCOS Prevention and Risk Factors

Currently, there is limited information about preventing PCOS. Many of those diagnosed with this condition are genetically predisposed as it tends to run in the family; however, it is important to note that the role of genes is not exactly clear. Genes may make you susceptible to developing the condition but may not guarantee the development (Schlanger, MD, 2021). There are other risk factors besides genetics that are involved in the development of PCOS.

According to Kacy Church, MD et al. (2023), risk factors that may bring out or worsen symptoms include, but are not limited to:

  • Chronic stress
  • Chronic inflammation
  • Weight gain
  • Insulin resistance
  • Smoking: Smokers have higher androgen levels than nonsmokers.

What are the symptoms of PCOS?

The most common signs of PCOS include:

  • Acne
  • Infertility 
  • Weight gain or trouble losing weight
  • Male-pattern baldness or thinning hair
  • Hirsutism
  • Hyperpigmentation (skin that looks darker than your natural skin tone because of the overproduction of melanin), especially around creases in skin and facial and neck hair
  • Irregular or infrequent periods
  • Ovaries with multiple cysts
  • High levels of androgens

Symptoms of PCOS vary depending on a number of factors including but not limited to race, ethnicity, genetics, and environmental disparities. For example, certain symptoms are more prevalent in one ethnicity compared to others. According to health journalist Vanessa Haye (2021), the variability in symptoms and how they present in different people means that up to 75% of women with PCOS do not receive a diagnosis for their condition. Black women are disproportionately affected by PCOS, and according to health journalist Lisa Basile (2020), PCOS affects women of color more frequently and severely. If you have any symptoms of PCOS, advocate for yourself and consult with your doctor.

Main Causes of PCOS

According to Rebecca E. Campbell, Ph.D, et al. (2017), PCOS is a broad-spectrum disorder unlikely to stem from a single common origin. Despite the prevalence of PCOS, there isn’t a clear understanding of its cause. However, the role of androgens in PCOS is well understood and recognized as being responsible for the development and manifestation of PCOS and other related conditions that often accompany PCOS. In addition, multiple genetic and environmental factors play an important role in the occurrence of PCOS (Ritu Deswal et al., 2020).

Black Women and PCOS

PCOS affects Black women disproportionately. For example, researchers found that Black women with PCOS are shown to have higher rates of hirsutism, insulin resistance, obesity, and a higher risk of cardiovascular disease or metabolic syndrome which includes increased blood pressure, high blood sugar, and abnormal cholesterol (D. Shah, 2022). In addition, Black women with PCOS also have a lower likelihood of getting pregnant (Basile, 2020). 

Many Black women, especially those with PCOS, have reported that they sometimes feel ‘invisible' when it comes to seeking help from medical practitioners. Some Black women have become familiar with healthcare gaslighting–the repeated denial of someone’s reality in an attempt to invalidate or dismiss their health concerns. For instance, women have reported experiences in which their PCOS symptoms were dismissed due to their high body mass index (BMI). BMI is often used as a measurement of whether a person is under- or overweight or falling within a normalized range, but it doesn’t distinguish between excess fat, muscle, or bone mass. Doctors simply instructed these patients to lose weight instead of paying more attention to the other symptoms the patients were concerned about (Haye, 2021). 

In an interview with RSP, Latoya Shauntay Snell, founder and CEO of Running Fat Chef, told us that sometimes her encounters with doctors over her myriad reproductive health issues made her want to stop seeing doctors altogether. She said, “it comes down to my medical experience of walking into a doctor's office, being profiled, having things assumed about you before you even open your mouth before the examination even happens, it gets to a place where, You have someone who just completely avoids the doctor's office.”

Diagnosis and Treatment

Diagnosis
PCOS cannot be diagnosed with basic tests such as blood tests, cultures, or biopsies. Instead, the diagnosis of PCOS is given after a process termed “differential diagnosis” in which all more common disorders associated with the symptoms are ruled out. A diagnosis of PCOS can usually be made if two of the following three criteria have been met: 

  •  Irregular or infrequent periods
  • The presence of high amounts of androgens
  • The presence of polycystic ovaries in scans

Treatment
Early diagnosis and treatment are crucial to avoid or reduce long-term complications such as diabetes and heart disease. Treatment can reduce unpleasant symptoms and help prevent long-term health problems. Treatments include, but are not limited to:

  • Medicine: Doctors have the option of prescribing a variety of medications, depending on the individual and their preferences. The medication can help reduce certain symptoms. Ask your doctor if you need vitamin D supplements.
  • Oral Contraceptives: Hormonal birth control can be helpful in regulating menstrual cycles and reducing symptoms associated with high androgen levels.

Consult with your healthcare provider about which treatment option would be best for you.

Learn more about PCOS