Last month, the company Black Girl Vitamins launched a gummy vitamin called PCOS Relief, targeted to Black women experiencing polycystic ovary syndrome (PCOS). The vitamin sold out of its initial production in twelve hours. Here is just one example of the dire need for greater attention to the illness and those most at risk for it, one from which as many as 5 million people are currently suffering.

In PCOS, ovaries produce an excessive amount of androgen hormones, a group of sex hormones that develop and maintain stereotypically masculine features and characteristics. Usually, androgens, like testosterone, are produced in lower amounts for people with ovaries. When an excess of androgens are present, this causes a shortage of the other sex hormones needed to have a healthy ovulation and menstrual cycle. The symptoms of PCOS vary, and can include but are not limited to irregular, missed, or very light menstrual cycles; painful menstruation; large ovaries; ovaries with cysts; excessive body hair; dark or thick skin in areas like the back of the neck or armpits; weight gain, especially around the stomach area; oily skin; acne; infertility; skin tags or moles; and balding or thinning hair. It’s no wonder that the new vitamin sold out in hours. These symptoms would be disconcerting for anyone. 

While most of the symptoms of PCOS are present across various populations, there is research to support that Black women1 are disproportionately affected by PCOS. In this commentary, we will examine the unequal impacts of the illness, the inequitable access to treatment, and what policymakers can do to help bring justice to this issue where structural racism and sexism intersect.

The Inequities Both Inside and Outside a PCOS Diagnosis

As noted above, PCOS does not affect all populations equally, and data have shown that it hits Black women especially hard. According to the data, when compared to the general population of women of all races who have PCOS, Black women with PCOS experience higher rates of infertility, obesity, and insulin resistance, as well as a higher risk of cardiovascular disease, which could lead to high blood pressure and abnormal cholesterol. 

While the reason for these disparities aren’t clear, most experts believe that they are due to a combination of various social determinants of health that are negatively impacted by racism, sexism, and other forms of systemic oppression. 

Black women, trans people, and gender-expansive folks often face greater barriers to care and experience systemic inequities that can make it extremely difficult to access adequate treatment for a condition like PCOS.

Factors like health care disparities, education inequity, and economic instability can all play a role in one’s ability to provide a better quality of life for themselves. Black women, trans people, and gender-expansive folks often face greater barriers to care and experience systemic inequities that can make it extremely difficult to access adequate treatment for a condition like PCOS. For example, one way to treat the symptoms of PCOS is to adjust one’s diet and exercise regimen. But if one lives in a neighborhood without access to affordable fresh food or accessible child care to create more free time, these are not recommendations one can reasonably pursue. Because of structural racism, Black communities are overrepresented in areas with negative health factors. Another way to manage PCOS is to reduce stress. Black women also disproportionately suffer from chronic stress due to racial, class, and gender discrimination, as well as because of family stress and the “superwoman complex,” an overcorrection to racism that refuses Black women reasonable expectations of their stamina, strength, and emotional fortitude.

This is compounded by the fact that even receiving an accurate diagnosis of PCOS can be a challenge for Black women. Racial and gender discrimination in medicine have led to Black women’s health receiving inconsistent and inadequate attention from providers. 

The Difference Reproductive Justice Can Make

Reproductive conditions like PCOS do not exist in a vacuum. Sadly, many of the potential suggested solutions to PCOS are individualistic recommendations that cannot hope to outpace the systemic production of illness. The same systemic issues that allow the mistreatment of Black communities are the same conditions that allow societal ignorance of reproductive health, rights, and justice. Now is the time to challenge the standard narrative and bring innovative solutions to bear, from screening to treatment.

Now is the time to challenge the standard narrative and bring innovative solutions to bear, from screening to treatment.

The reproductive justice framework can help us get there. SisterSong defines reproductive justice (RJ) as the human right to maintain personal bodily autonomy, have children, not have children, and parent the children we have in safe and sustainable communities. Issues like abortion access, Black maternal health disparities, and birth equity are typically associated with the reproductive justice movement. It’s time that PCOS, as a chronic reproductive health condition, also becomes part of the RJ agenda.

Chronic reproductive illnesses like endometriosis, uterine fibroids, and PCOS can have a direct effect on one’s ability to reproduce, parent, and sustain wellness overall. One of the many potential side effects of PCOS is infertility. Infertility treatments can be inaccessible, costly, and can strain the body. Additionally, the recent attacks on IVF compound access as well. Moreover, if one can become pregnant, that person is more likely to suffer from serious side effects like preeclampsia and high blood pressure. PCOS is yet another landmine in the dire Black maternal health crisis overall. 

Another issue to consider is how attacks on abortion access affect reproductive health and wellness overall. People that need to terminate a pregnancy for health or personal reasons are being forced to risk their lives via criminalization and high-risk health situations. With this in mind, there has to be intentional considerations regarding those that suffer from PCOS. One of the main side effects is inconsistent periods. As a movement, we must ask ourselves what could happen at the intersection of inconsistent menstrual cycles, increased surveillance, and criminalization of pregnancy loss. Someone with PCOS could easily be pregnant and not know due to inconsistent cycles, and at the same time not have access to abortion due to certain states’ abortion bans. That person could also be accused of terminating a pregnancy if a skipped cycle is interpreted as a pregnancy that was terminated. Additionally, someone with PCOS may also need special care due to side effects like preeclampsia while pregnant. People affected by PCOS are three times more likely to have a miscarriage. From these examples, we can see how attacks on abortion access put patients with other health conditions, as well as their care providers, at risk while they are trying to make the best decisions for themselves and their families.

Some may not grasp why it’s necessary to advocate for PCOS from a reproductive justice perspective. PCOS is understood as a reproductive health issue because of its direct impact on people’s reproductive systems. Although issues related to birth and maternal health are important, reproductive justice requires a holistics view of causes, impact, and solutions for PCOS. 

There are at least 5 million people that are living with PCOS: According to Dr. Louise Change, that is more than the amount of people who have breast cancer, lupus, rheumatoid arthritis, and multiple sclerosis combined! Celebrities like Keke Palmer, Chrisette Michelle, and Candice Craig have shared their PCOS journey. As attention on PCOS increases, it’s vital that there is a multi-pronged approach to addressing the illness and providing comprehensive solutions. Many things need to be done to help address this condition. 

What Policymakers and Advocates Should Prioritize

On a structural level, elected officials, advocates and other important stakeholders must push for more legislation to address PCOS. For starters, these bills must include funding for culturally competent research, adequate training and screenings for health care professionals, and to increase general awareness. It’s vital that these efforts are informed by black women with lived experience. Organizations like PCOS Awareness Association, which aims to increase global awareness of PCOS and support those diagnosed with this condition, help bridge important gaps in awareness and messaging. Additionally, PCOS Challenge: The National Polycystic Ovary Syndrome Association is the leading nonprofit patient support and advocacy organization globally that is advancing the cause for women and girls with PCOS.  In 2018, PCOS Challenge worked with members of the U.S. Congress to create the Congressional Polycystic Ovarian Syndrome Caucus, a bipartisan educational forum for congressional members. This bipartisan caucus is likely the only space that creates legislative and policy solutions that help improve health outcomes for people affected by PCOS; reduce the economic burden of the disorder; and address gaps in PCOS research, education, treatment, and care. 

The stigma that affects discussing periods out loud contributes to normalizing painful or inconsistent cycles, which in turn increases the risk of their going unnoticed and therefore untreated.

On an interpersonal level, it is crucial that we center the needs of Black people in reproductive health. Conversations about menstruation tend to feel taboo and personal. The stigma that affects discussing periods out loud contributes to normalizing painful or inconsistent cycles, which in turn increases the risk of their going unnoticed and therefore untreated. This, coupled with generational trauma that normalizes our collective struggles, can lead to the dismissal of conditions like PCOS, endometriosis, and uterine fibroids—not to mention that sex education traditionally does not even begin to cover anything outside of pregnancy prevention and some STIs. While PCOS is difficult enough to manage on its own, it can also lead to other health issues that disproportionately affect the Black community. Some examples include diabetes, heart disease, high blood pressure, uterine cancer, sleep apnea, depression, anxiety, endometrial cancer, stroke, obesity and insulin resistance. 

Imagine how much further along we might be in PCOS diagnosis and treatment if there were serious concern for what happens to Black folks and their reproductive lives. It is past time that PCOS is taken seriously. The quality of our health, lives, and futures depends on it! 

Notes

  1. Not everyone who experiences PCOS identifies as a woman, but the data available on the illness reference women specifically.