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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. 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.
This is ificant because PCOS is linked to other serious health conditions, such as metabolic and cardiovascular comorbiditiesinfertilitypregnancy complicationspsychological disordersand 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 Warrenboth of whom are certified obstetricians and gynecologists. 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.
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 year-old Black woman from the U. You had to be overweight. He handed me a [prescription] for birth control pills [and] told me to prepare for adoption.
At the time, she weighed pounds — approximately 50 kilograms Looking for woman of color and doctors considered her to be underweight. She continued to have irregular cycles before seeking medical advice again at the age of Once a test detected high levels of estrogenthe doctor suspected PCOS and referred Monica to an endocrinologist for a formal 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. 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. In line with Dr. 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.
Doctors also told her that the issues with facial hair were due to puberty. He asked me what I wanted him to diagnose me with. I was so offended. June-Ann, a year-old Black woman, also from the U. Her doctor referred her for a vaginal ultrasound to investigate the severe pelvic pain she was experiencing during ovulation. It could partly explain the low rates of recorded diagnoses of PCOS among women with at least two of the three Rotterdam criteria. There is often a misconception that PCOS symptoms only affect physical health. This affects how quickly these groups seek medical intervention and consequently increases the risk of other health conditions developing later in life.
A study showed that unconscious bias and other race-related disparities are associated with differences in access to care and the use of treatment. 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. Monica was a U. I had big thighs […].
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. 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.
The authors conclude that these disparities are due to differences in weight perception or a knowledge gap in interpreting what constitutes excess body weight.
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. This involves input from physicians, culturally competent nutritionists, fitness professionals, and mental health practitioners, as the international PCOS guidelines propose.
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. I was devastated [when it grew back] because I had saved that money for so long. Duke demystified how cultural taboos inform negative body constructs.
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. A study featuring in Nature Medicinewhich 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.
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. I had anxiety and depression, and I was just given medication [birth control pills].
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 Looking for woman of color. 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. Like June-Ann, she is now relying on personal lifestyle adjustments to improve her mental health. 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. 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.
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. Both of the medical experts we interviewed explained how beneficial online platforms can be, offering their own advocacy work as an example.
Warren is the founder of The Ovary Storyan online platform that empowers girls and women to educate themselves about their reproductive system and the health conditions that can occur from puberty through Looking for woman of color postmenopause. The platform exists to encourage open conversation. 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.
Natural treatments and lifestyle changes, such as diet changes, supplements, and herbal remedies, may help with the symptoms of polycystic ovary….
PCOS symptoms include irregular periods and weight gain. Some people experience more severe symptoms than others and need different treatments. My name is Nadine Dirks. It took over a decade before doctors diagnosed me with endometriosis. Read about my misdiagnosis and mistreatment as a Black…. We investigate. The difficulty of obtaining a diagnosis. Misconceptions, taboos, and stigma. Mental health vs. Depression and its long-term impact. Spinach reduces colon cancer risk: Study explores how.
Related Coverage. What are the best natural treatments for PCOS? Why are some PCOS symptoms more severe than others? Medically reviewed by Amanda Kallen, MD. Misdiagnosis, mistreatment, and living with endometriosis as a Black woman My name is Nadine Dirks.Looking for woman of color
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