Uterine fibroids and polycystic ovary syndrome (PCOS) affect millions of women every year, but these conditions disproportionately affect Black women. Uterine fibroids and PCOS are conditions that cause growths to form in female reproductive organs. Fibroids are benign tumors that appear in the uterus. PCOS causes cysts that occur in one or both ovaries.
Both have been linked to hormone imbalances that cause irregular and painful menstrual cycles and diminish fertility. Most medical professionals believe that there is no connection between fibroids and PCOS. However, a six-year study of 23,000 Black women by the Boston University Slone Epidemiology Center challenges this idea. The data showed that the incidence of fibroids was 65% higher among Black women with PCOS than those without.
Research shows that Black women suffer fibroids two to three times more than white women. Black women also tend to experience fibroids at a younger age and often have more severe cases. Suffering from fibroids at an earlier age makes them more likely to undergo surgery, such as a hysterectomy.
Fighting Against “Invisible” Conditions and Medical Racism
About 20% to 50% of all women with fibroids experience related symptoms, even though an estimated 80% of women develop uterine fibroids by age 50. Similarly, an estimated 75% of women with PCOS go undiagnosed. Moreover, racial bias in medical settings means that women of color go undiagnosed at even higher rates.
PCOS can produce “silent” symptoms, such as insulin resistance and impaired glucose metabolism, which medical professionals often overlook, particularly in Black and Asian women. This means that PCOS may present differently for them, which only further complicates the process of receiving a diagnosis.
Research is also lacking on how fibroids impact different ethnicities. Misconceptions prevalent among minority communities around menstrual cycles and symptoms also contribute to both conditions going undiagnosed. Many patients thought symptoms, such as pain during sex, painful menstrual cramps, and very heavy periods, were normal.
“Bleeding heavily for 10 days is not normal at all, but if that’s what your mom or sisters experienced, you might think it is,” said Dr. Erica Marsh, professor of obstetrics and gynecology at the University of Michigan Medical School in an article. “These misconceptions of ‘normal’ are a big reason many women delay treatment and suffer longer.”
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, some primary care doctors find it difficult to understand the criteria and what to look out for. PCOS tends to present as a spectrum of symptoms, and it has had various medical descriptions over the years.
A 2015 study showed that unconscious bias in health care and other race-related disparities are associated with differences in access to care, health diagnoses, and the use and type of treatment. These barriers lead to many women of color missing key preventive services, diagnoses, and treatment for conditions such as uterine fibroids or PCOS.
“As black women, we are completely overlooked because we are traditionally heavier or have more curves,” Alicia Wilson wrote in a blog post, “Living with PCOS as a Black Woman.” “We are immediately told to lose weight, which is not the answer for everyone. When we tell them about our symptoms, they attribute it to needing to lose weight. They rarely look into anything else.”
Early diagnosis of these conditions is crucial. Untreated PCOS can lead to long-term complications, such as diabetes and heart disease. Early diagnosis of uterine fibroids can help women begin treatment and avoid a total hysterectomy.
Although other less invasive treatment options can be tried prior to a total hysterectomy, evidence suggests that Black women with uterine fibroids are often offered a hysterectomy as a first and only treatment option. As a result, they are two to three times more likely to undergo the procedure than white women.
Racial disparities in the medical field also lead to fewer Black women seeking help for infertility issues. Studies show that Black women often start IVF treatments an average of two years later than their white counterparts. The earlier a woman begins fertility treatments, the greater likelihood it will be successful.
Risk Factors for Uterine Fibroids and PCOS
Though no fundamental cause has been found for either uterine fibroids or PCOS, some risk factors can contribute to a diagnosis.
Risk Factors for fibroids include:
- Elevated levels of estrogen and progesterone.
- Race (Black women have a higher incidence).
- Fibroids in your family.
- Menstruation at an early age.
Risk Factors for PCOS include:
- Elevated levels of androgens.
- Elevated levels of insulin.
- A family history of PCOS.
But what contributes to Black women being more susceptible to uterine fibroids? Researchers have found several elements that may be linked to this disparity, such as genetics. One study also suggested that Black women generally experience more significant overall lifetime stress than other groups, which might trigger fibroids. Other evidence suggests environmental factors, such as diet or a history of abuse, and vitamin D deficiency increase risks.
An unusual and controversial factor seems to be hair relaxers. Hair relaxers contain hormonally-active compounds and harsh chemicals and are commonly used by Black women. A study found an increased risk of fibroids among those who had the longest and most frequent use of hair relaxer. Black women living in the South with higher educational status, higher income, and white-collar jobs registered the most frequent use of hair relaxers and also had the greatest risk of early and more severe fibroids.
Signs and Symptoms of Uterine Fibroids and PCOS
Symptoms of PCOS include:
- Irregular or missed periods.
- Very heavy and/or painful periods.
- No ovulation.
- Excess facial and body hair.
- Enlarged ovaries.
- Weight gain or difficulty losing weight.
- Pain in the pelvic area.
Symptoms of fibroids include:
- Enlarged uterus.
- Pain in the pelvic area.
- Heavy and prolonged bleeding.
- Abdominal cramps.
- Pain during sex.
- Severe menstrual cramps.
- Frequent urination.
If you are experiencing these symptoms, uterine fibroids or PCOS could be the cause. It is important to reach out to a healthcare professional to get a proper diagnosis.
Overall, more research is needed to determine why certain conditions disproportionately affect people of color. The history of medical racism and bias should also be further addressed and prioritized so that women of color can be appropriately diagnosed and treated for often “invisible” conditions such as uterine fibroids and PCOS. Education and advocacy around these conditions is crucial in making progress and raising awareness.
PCOS Awareness Association: https://www.pcosaa.org/
Uterine Fibroid Awareness: https://www.fda.gov/consumers/knowledge-and-news-women-owh-blog/knowledge-news-women-fibroid-awareness-month