PCOS in Women of Color: Its true impact
In the United States and the United Kingdom, polycystic ovary syndrome (PCOS) affects 1 in 10 women. This condition disproportionately affects Women of Color. To find out more, Medical News Today spoke with three Women of Color living with this condition to learn how the disorder has affected their health. We also sought the opinions of two medical experts.
Existing research indicates that PCOS, which is an endocrine system disorder, affects approximately 8–13% of women of reproductive age worldwide.
PCOS can cause the ovaries to become covered with small cysts or fluid-filled sacs, sometimes leading to symptoms such as irregular periods, weight gain, and acne.
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.
This is significant because PCOS is linked to other serious health conditions, such as metabolic and cardiovascular comorbidities, infertility, pregnancy complications, psychological disorders, and cancer.
Moreover, racial bias in medical settings, as well as sociocultural taboos around infertility and weight gain — two of the effects of PCOS on health — can also negatively affect the way in which doctors perceive PCOS and treat the condition in Women of Color.
Medical News Today has spoken with three women living with this condition to learn more about their experiences of getting a diagnosis and navigating PCOS despite receiving little or no treatment. We also found out about the subsequent impact on their health.
For an expert outlook on the misconceptions surrounding PCOS and how it affects certain people, we spoke with Dr. Cindy Duke and Dr. Dominique Warren, both of whom are certified obstetricians and gynecologists.
An ‘invisible’ illness
Many people regard PCOS as an invisible illness because it sometimes — particularly in Black and Asian groups —produces “silent” metabolic symptoms, such as insulin resistance and impaired glucose metabolism.
This can be an issue for these groups because, as some studies have shown, from a biological point of view, PCOS may manifest differently for them, which can complicate the process of receiving a correct diagnosis.
Dr. Duke explained to MNT: “There are many [doctors] who use metabolic syndrome as part of their criteria for diagnosing PCOS, which is inaccurate and goes against diagnostic guidelines. Those who may not demonstrate the usual [symptoms] or happen to be on the leaner side have what looks like normal glucose metabolism, and depending on the type of test you’re told to have done, you could be incorrectly told you don’t have PCOS.”
Without early interventions, PCOS can lead to serious long-term health conditions, partly due to the complexity that causes misdiagnosis and lack of care.
This is what happened to Monica, a 46-year-old Black woman from the U.S., who told us about her experience as a young adult:
“I visited the doctor after having sporadic periods […]. I wasn’t diagnosed with PCOS because then, it [irregular periods] wasn’t enough to be considered a characteristic of PCOS. You had to be overweight.”
Monica continued: “I went to a physician’s office. He handed me a [prescription] for birth control pills [and] told me to prepare for adoption.”
At the time, she weighed 110 pounds — approximately 50 kilograms — and doctors considered her to be underweight. She continued to have irregular cycles before seeking medical advice again at the age of 27.
“I had an adverse reaction to the medication […] and also gained 30 pounds in a month,” Monica told us.
Once a test detected high levels of estrogen, the doctor suspected PCOS and referred Monica to an endocrinologist for a formal diagnosis.
The difficulty of obtaining a diagnosis
Obtaining a PCOS diagnosis has improved over the years since the Rotterdam Criteria established that a woman might have the disorder if she experiences any two out of the three major symptoms: polycystic ovaries, high androgen levels, and irregular menstrual cycles.
However, Dr. Warren commented, “some primary care doctors may find it difficult to understand the criteria and what to look out for,” as PCOS tends to present as a spectrum of symptoms, and it has had various descriptions over the years.
She explained that “you might have a person that has a period every 5 weeks, so they seem to be quite regular but are just outside the norm. Then, the other spectrum of people don’t have periods at all.”
“Those [with seemingly regular periods] may not realize there is an issue until they try to get pregnant. They [may] go to the [doctor] because they have an issue with acne, facial hair, or weight […] but may be told to go on the pill because they have regular periods.”
– Dr. Dominique Warren
MNT spoke with another contributor, 22-year-old Nikita, who is Asian and from the U.K. In line with Dr. Warren’s insight, she recounted how PCOS symptoms can vary and present differently among individuals.
Nikita had to wait for 7 years to receive a diagnosis.
At the age of 13, after speaking with a family member with diagnosed PCOS, she suspected that she had it, as she had symptoms such as irregular periods and excessive facial hair growth.
However, she stated, “[Over the next few years], I made numerous […] trips [to the doctor], and the doctors weren’t doing anything”. Doctors also told her that the issues with facial hair were due to puberty.
“At one point, I saw my doctor because I was having bad dizzy spells. He asked me what I wanted him to diagnose me with. I was so offended. Then, [at the age of 19], I went back for vaginal discharge issues, and that’s when they [the doctor] looked into it and found bacterial vaginosis.”
She added that “[t]hey did a cervix check and other tests,” which finally confirmed her PCOS diagnosis.
June-Ann, a 32-year-old Black woman, also from the U.K., was the only one of our contributors who received her diagnosis relatively quickly, at the age of 17, despite having regular cycles.
Her doctor referred her for a vaginal ultrasound to investigate the severe pelvic pain she was experiencing during ovulation.
“I was told there were cysts on my ovaries, and the blood test [indicated] PCOS,” she told us.
The experiences of two of the three women we interviewed are consistent with concerns about the impact of “healthcare gaslighting” — the repeated denial of someone’s reality in an attempt to invalidate or dismiss their health concerns.
A study published in Circulation: Cardiovascular Quality and Outcomes in 2015 suggests that delays in diagnosis can also occur as a result of women’s anxiety about doctors construing their complaints as trivial.
It could partly explain the low rates of recorded diagnoses of PCOS among women with at least two of the three Rotterdam criteria.
‘Seen’ but not ‘heard’
There is often a misconception that PCOS symptoms only affect physical health. As a result of cultural taboos and stigmas associated with body image and mental health in Communities of Color, metabolic symptoms tend to be overlooked due to their “invisibility.”
This affects how quickly these groups seek medical intervention and consequently increases the risk of other health conditions developing later in life.
Dr. Duke suggested, “[c]linicians themselves sometimes have weird cultural biases and cultural norms because PCOS is poorly or inadequately taught in medical school and training.“
“If you’re an OB-GYN [obstetrician-gynecologist], you may come across it again after medical school, […] but even for most OB-GYN, unless they’re going into a subspecialty that focuses on PCOS, many decide it’s too complicated because there are variations,” she pointed out.
A 2015 study showed that unconscious bias and other race-related disparities are associated with differences in access to care and the use of treatment.
The change in Monica’s experience since diagnosis is consistent with this finding. She reflected on her experience, noting, “[n]ow that I am overweight, my treatment is very different.”
Due to relocating several times over the years, Monica saw several physicians and revealed that “most were dismissive” of her health concerns and usually commented on her weight but did not provide the appropriate healthcare for her PCOS.
She sought care from an endocrinologist, assuming her treatment would be more robust due to their specialism: “[She] constantly berated me, telling me I needed to lose weight. I remember I went in for one visit […], and she told me I look[ed] like I was eating whatever I wanted to eat. I never went back to her again after that.”
Racial stereotypes and ‘weight bias’
Monica was a U.S. size 8 (U.K. size 12) at the time. “I’m a Black female. I had big thighs […]. I just had certain things that were part of my heritage that I couldn’t get rid of,” she said.
Women of Color frequently report incidents of weight bias during medical consultations. Healthcare professionals often make assumptions about their diets being poor and do not offer them helpful advice on nutrition or exercise.
June-Ann referred to a time she struggled to lose weight, despite making efforts to exercise. “My doctor insinuated that I’m not trying hard enough,” she recalled.
“I never went to the doctor about my sleep apnea because I was scared that they would also correlate it with being overweight [as opposed to PCOS being the cause],” she added.
Assumptions about Black women’s body weight and diet persist despite the fact that their weight is often actually within the range classified as healthy.
Dr. Warren pointed out that “Black women aren’t always associated with obesity. They can be what I would consider a ‘normal’ BMI [body mass index] but with PCOS […].”
This suggests that medical professionals are not always considering the medical history of their patients and the sociodemographic and lifestyle factors that contribute to their health status.
Data published in the Journal of Women’s Health investigated the disparities in the extent to which people belonging to different ethnic groups underestimate their weight. The authors conclude that these disparities are due to differences in weight perception or a knowledge gap in interpreting what constitutes excess body weight.
Dr. Duke reiterated that weight is not necessarily an indicator of PCOS. She further explained how misdiagnosis, when inappropriately applying weight as a diagnostic criterion, occurs.
“[W]omen who present with polycystic ovaries but nothing else [are correctly] told they do not have PCOS [in the eyes of some healthcare professionals] […], yet when [they are] overweight, the doctor decides [they have] PCOS even though they don’t meet any other actual diagnostic criteria,” she noted.
“It’s very complex [when it comes to associating body weight with a health diagnosis], due to what we call ‘phenotypes‘[…]. To keep up-to-date and informed, we need to also have what I call ‘multidisciplinary teams.’”
This involves input from physicians, culturally competent nutritionists, fitness professionals, and mental health practitioners, as the international PCOS guidelines propose.
Misconceptions, taboos, and stigma
The impact of PCOS on Women of Color — specifically the way in which it affects their body image, could sometimes also be due to how family members and others within their community perceive and treat them.
Nikita revealed how much emphasis is placed on taking care of your image in her Trinidadian culture. “Bodily hair is so frowned upon […], and [it comes across as] a woman is choosing to not look after herself,” she said.
After family members mocked her during a visit to Trinidad, she said: “I finally paid £1,000 for laser treatment [to remove body hair] […]. I was devastated [when it grew back] because I had saved that money for so long.”
Dr. Duke demystified how cultural taboos inform negative body constructs. “We all grew up knowing of women who have hairy faces […], and instead of a conversation about the [possible] underlying condition, there’s a tease,” she said.
In some cases, the cultural silence and stigma around these issues could be what causes disinformation and prevents Women of Color from seeking healthcare.
Nikita expressed the relief she felt on learning to embrace her facial hair through support from her mother, who had had a similar experience.
Dr. Duke endorsed the importance of normalizing conversations across generations to educate families and communities, emphasizing her hopes for a better-informed future: “30 years from now, I don’t want to hear that young women didn’t know about their PCOS until later.”
A study featuring in Nature Medicine, which looked at the transgenerational risks for PCOS, suggests that facilitating earlier lifestyle and medical interventions could reduce the risk of other health conditions in those with this condition.
Mental health vs. reproductive health priorities
The lack of satisfactory care after diagnosis is also a major barrier for women from historically marginalized groups who live with this condition.
All the contributors spoke with MNT about the lack of treatment and how it caused other issues, affecting their mental health and quality of life.
For her part, June-Ann complained: “There has been no aftercare. I had anxiety and depression, and I was just given medication [birth control pills].”
“I was warned, ‘You may not be able to have kids’ […] so come back [for advice] when you’re ready,” she also told us. As this was not June-Ann’s personal priority at the time, she was left to manage her condition on her own.
To do so, she focused on lifestyle changes such as exercise, dietary supplements, and therapy.
Another observation that all our contributors made was that doctors placed more emphasis on the reproductive problems attributed to PCOS, even though none of the women had mentioned this as a future health concern after diagnosis.
MNT asked both health experts why this was the case, and Dr. Warren suggested that it might be “because you can do something to treat that [infertility] with a baby as an outcome.”
Dr. Duke elaborated on this issue, saying:
“Most of [what] we use to treat PCOS is re-appropriated from other medical conditions. They’re not putting research and development into therapies specific for PCOS because there’s no money in it as a field, [but] there’s money if you’re infertile and you need treatment.”
Depression and its long-term impact
There were parallels in the experiences of all our contributors, who talked about how the lack of satisfactory aftercare caused their depression.
Both Monica and Nikita, in particular, were transparent about how they experienced other long-term health issues due to the lack of treatment they received, which further decreased their mental well-being.
Nikita recalled the time she sought advice from her doctor, who referred her for cognitive behavioral therapy.
Nikita only had two sessions until she stopped attending. She described her counselor as “dismissive” and “insensitive” whenever she spoke about her period.
Like June-Ann, she is now relying on personal lifestyle adjustments to improve her mental health.
Our other contributor, Monica, referred to the start of the COVID-19 pandemic as the worst period of her depression, saying that “[t]he biggest part [of PCOS] that has affected me is the weight gain and the depression […].”
At the start of the pandemic, she noted, it was “through the roof, and I no longer cared about my health so didn’t seek help. That is how I developed hypothyroidism.”
Their experiences demonstrate that there needs to be a focus on how to support people with PCOS-associated mental health problems, with attention to weight, body image, and fertility, as these are often prevalent taboo topics.
Voicing a ‘silent’ condition
All or most of the contributors who spoke with MNT mentioned healthcare gaslighting, the perpetuation of cultural taboos and stigmas, as well as the lack of treatment as causes behind the inadequate care that Women of Color who live with PCOS continue to experience.
MNT asked all our contributors how they think that PCOS care can be improved. The consensus was that educating the wider PCOS community, receiving empathy and compassion from support networks, and finally allowing people with the condition to feel heard could improve ongoing care.
The lack of support from the medical community would explain why 30% of women with PCOS rely on online forums for support, according to some U.K. data.
Both of the medical experts we interviewed explained how beneficial online platforms can be, offering their own advocacy work as an example.
Dr. Warren is the founder of The Ovary Story, an online platform that empowers girls and women to educate themselves about their reproductive system and the health conditions that can occur from puberty through to postmenopause. The platform exists to encourage open conversation.
Dr. Duke talked about My Dynamic Uterus, her online movement reaching 18,100 members, which is “intended to explore the […] often unheard narratives of people born with a uterus or ovaries, or those who care for them, through diverse and guided perspectives; from expert professionals and affected individuals around the globe.”
June-Ann, who remarked that “there are a lot of [resources for] African Americans, but there [aren’t] a lot of British Black people talking about PCOS,” started her own successful Black Broke & Anxious Podcast, born out of her therapeutic journey.
Likewise, “suffering in silence” inspired Nikita to create her Instagram awareness page. Since sharing her journey, she has received messages from women worldwide who say they feel “less alone.”
Demonstrating that advocacy and awareness go beyond social media, Monica volunteers for PCOS Challenge: The National Polycystic Ovary Syndrome Association, a leading nonprofit organization that provides support and advocacy for people dealing with PCOS globally.
As a member of the patient advisory board, she is currently part of a project creating a registry to house data in one space so that research is more readily accessible for clinicians and researchers.
In speaking with MNT, she also strongly encouraged Black women to be more vocal about their health concerns: “To be taken more seriously […], we have to [reveal] doctors’ dismissiveness. [Otherwise], nothing’s ever going to change.”
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