My body stiffened at the news I received from my OB-GYN.
I had been anxiously waiting for the results from a uterine ultrasound, a test that I desperately hoped would get to the root of my immensely painful and irregular periods. I had suffered in silence for years, then spent at least one more traveling across the rural Mississippi Delta, where I lived, in search of answers, enduring dismissive nurses and elusive doctors. Then, in August 2021, the journey finally led me here, to a Black female doctor in Washington, D.C., who listened to my concerns and ordered the diagnostic ultrasound, an option I hadn’t known existed.
Two months later, on my birthday, an email notification from my patient portal popped up on my phone. I quickly logged onto my computer.
“Your ultrasound appears normal,” the message said. “However, there appears to be cysts on the ovarian which can be indicative of PCOS, which would explain your absent periods.”
I swallowed hard, trying to process it all. What’s wrong with my body? What did I do wrong? And what the hell is PCOS?
I scheduled a telemedicine visit to learn more about the condition. On the other side of the computer screen, the doctor asked whether I knew anything about PCOS. I shook my head no and wiped my sweaty palms on my dark blue denim jeans, planting them firmly on my knees to stop my legs from shaking. The drumming in my chest echoed loudly in my ears.
“The full name is polycystic ovary syndrome,” she said. “Currently, there is no cure.”
Nationwide, 6% to 12% of women of reproductive age have been diagnosed with PCOS, a metabolic and reproductive health condition where an abnormal amount of the male sex hormone, known as androgen, is produced. As a result, a woman’s eggs may not develop or release during ovulation, which leads to irregular or missed periods and infertility issues. Some women also have small cysts on the ovaries. Other symptoms include excess body hair on skin; dark patches on the neck, armpits, or breasts; acne or oily skin; and weight gain.
The exact cause of the condition is unknown, but excess weight, genetics, and environmental conditions such as obesity and toxins can contribute to it. While there is no cure, PCOS symptoms can be managed through a healthy diet, exercise, and medications such as oral contraception pills. Despite this, patients can still experience life-long ailments related to PCOS. In addition to infertility, they have higher risks of type 2 diabetes, high blood pressure, uterine bleeding, heart disease, and stroke.
While there is little research available on racial disparities among PCOS patients, experts say Black women are disproportionately affected by the condition. A study from the National Library of Medicine found that Black women with PCOS have an increased risk of metabolic syndrome and cardiovascular disease than white women.
Health care advocates and experts say the limited funding for PCOS research contributed to the lack of awareness and understanding of the condition. It wasn’t until 1990 that the National Institutes of Health, the largest funding agency in the world for biomedical research, developed a working definition and criteria for PCOS to help researchers and clinicians.
PCOS research has been underfunded, despite its life-long, negative outcomes on women’s health. Over the past 10 years, the National Institutes of Health gave $215 million to PCOS research, a significantly lower rate than other disorders with similar degrees of morbidity. Research for rheumatoid arthritis received $454 million. Systemic lupus erythematosus received $609 million.
“Diseases of women, in general, tend to be underfunded,” according to a 2017 study in the Journal of Clinical Endocrinology & Metabolism. While progress has been made recently in the United States, the authors wrote, “Underfunding for PCOS may also be the result of limited interest in the disorder by the various Institutes/Centers.”
As many as 75% of individuals with PCOS remain undiagnosed when visiting their doctor, according to a 2018 study in the National Library of Medicine. One reason: lack of provider knowledge about the condition. It isn’t uncommon for doctors to miss the signs, and it can take anywhere from six months to eight or more years to receive a diagnosis, said Dawn Kimberly Hopkins, a PCOS patient and women’s health nurse practitioner.
Hopkins said she didn’t learn about the disorder in nursing school. Over the years, she heard several stories of patients who suffered from obesity and irregular menstrual cycles. At the time, she didn’t know how to effectively treat them. So, she conducted her own research, which led her to PCOS.
“I just devoured all the literature I could, but I still didn’t really have answers,” she said. “We don’t know what causes it and really don’t know how to treat it, and that’s very frustrating.”
Once she learned of the critical life-altering effects of the condition, she began to analyze her own years-long symptoms, leading her to diagnose herself.
“As a Black woman, I think we take on a little more than we should, and we kind of say, ‘It’s not a big deal,’ instead of saying, ‘Wait a minute, something is wrong. Let me figure it out,’” Hopkins said. “I was so concerned with trying to help these women and not even looking in the mirror at myself.”
When her patients finally learned of PCOS, they were often ecstatic and emotional, Hopkins said, “because they’re so happy that someone is listening to them. I can’t care for you if I don’t listen to you. If I don’t listen to you, I won’t know what’s wrong with you.”
Reflecting back, Joanne Suarez, a public health professional, said she had experienced PCOS-related symptoms since her teenage years. While working as a caseworker in mental and reproductive health, Suarez learned about the alarming health issues of her clients. She began looking at her own body.
Understanding her family’s history of hormone issues, Suarez asked her clinician whether her weight gain and mood changes could be linked. Their response: anxiety and depression.
After more doctor visits, Suarez finally got a PCOS diagnosis and learned of her high testosterone levels. The doctor gave her a prescription for a medication to ease the symptoms, but didn’t explain the sudden life changes she would have to adapt to.
“We need to get more on a holistic plan because Black and brown women get these medications, we put all these things in our bodies, and you don’t tell us how it’s going to impact us,” Suarez said.
It’s incumbent upon health care providers, she said, to look beyond a chart or data to assess the nonmedical factors that influence the health of Black and brown patients. I can attest that the years of living with inadequate access to medical care, healthy food options, and work-related pay inequities in Mississippi contributed to my heightened levels of stress, anxiety, and other adverse health outcomes. Many doctors — fixated on my weight — told me to lose more pounds rather than ask about the societal factors affecting my health.
To combat the limited research, Suarez founded the Prospera Institute, a research center on health equity issues in communities of color to create social action.
“There’s people in the community that don’t know this stuff, and they’re probably allowing clinicians to tell them it’s attributed to your mood swings or it’s attributed to your history of mental illness,” Suarez said. “There’s a huge disparity on how we’re getting treated, and how we’re appropriately educating communities on how to get care.”
William Patterson, spokesperson for the PCOS Challenge: The National Polycystic Ovary Syndrome Association — a nonprofit organization dedicated to advocacy and research for people with PCOS — said underfunding of research and lack of PCOS-related health policy serve as two primary reasons why people aren’t aware of the disorder. The lack of research forces doctors to focus only on the reproductive health aspect of PCOS instead of including metabolic symptoms such as heart disease.
Patterson’s organization advocates for more research to study the impact of the quality of life and indirect costs of the disorder. For example, the accumulating costs of doctor visits or adapting to sudden lifestyle changes could cause mental health issues, which can result in problems such as presenteeism — when a person shows up but isn’t fully engaged — at work. In 2018, the PCOS Challenge worked with Congress to create a 15-member bipartisan PCOS Caucus.
The search for a diagnosis
For years, I have experienced irregular menstrual cycles. The months I did menstruate, the pain was unbearable. I stocked up on painkillers and Sprite. I forced myself to lay on the cold bathroom floor while holding a heating pad on my lower abdomen. Sometimes, I needed days off from work.
I started searching for answers in 2019. I visited multiple health care providers across the Mississippi Delta, driving mostly on rugged two-lane roads, passing stretches of cotton fields, Dollar General stores, and 18-wheeler trucks.
The region is predominantly Black, suffering from high rates of poverty, lack of employment opportunities, and limited access to health care and physicians. This has contributed to higher rates of diabetes, heart disease, and cancer, some of the leading causes of death and disability in the U.S.
While visiting a variety of health practitioners, I only spoke about my irregular periods. I didn’t mention the pain. The weight gain. The acne and discoloration on my face. The hair growth on my chin. I was embarrassed to talk about it and didn’t feel entirely comfortable talking about my body. I couldn’t develop a consistent relationship with one doctor because of the physician shortage, which is particularly dire in rural areas amid an aging workforce and population, smaller salaries, and intense workload.
With every conversation, I was met with familiar responses. “It’s normal to miss a period or two,” one doctor said. “Everything looks good, Ms. Wright,” another told me. So, I traveled further north of Clarksdale, my hometown. I asked a nurse whether I could be tested to pinpoint where the abnormalities could come from. Rather than help me figure out my options, she insisted I should just schedule a Pap smear, a method used to screen for abnormalities of the cervix, for two years later.
Feeling a bit defeated, I bit my lip, clasped my hands together and took a beat. I felt small and uneasy. I’m not a medical expert, but I knew there had to be another way. Shouldn’t there be other testing options to check for irregular periods?
In my spirit, I knew something was wrong, but I felt I hit a dead end and stopped asking questions. Until I moved to Washington, D.C.
The realities of living with PCOS
In addition to PCOS, my OB-GYN said I had pre-diabetes, another common health problem for patients with the disorder. About half of women with PCOS become diabetic or pre-diabetic before age 40, according to the PCOS Challenge.
Women with PCOS are also up to six times more likely to develop endometrial cancer and up to three times more likely to develop nonalcoholic fatty liver disease. PCOS contributes to at least 200,000 more stroke cases every year.
One of the major causes of the hormonal imbalance is infertility.
“Are you trying to have kids right now?” the doctor asked during the telemedicine visit.
I shook my head no. I hadn’t seriously thought about having a baby. My parents, my partner’s parents, and close friends frequently ask whether we want to have kids. Although they aren’t pressuring us, I feel the pressure, especially as I age. As a woman ages, the number and quality of her eggs decrease.
Truth is: I do want to have children, but I’m afraid. Black women’s maternal death rate is nearly three times the rate of white women. Women with PCOS who are pregnant have an elevated risk of preeclampsia, preterm delivery, cesarean delivery, miscarriage, and even fetal and infant death.
A colleague mentioned egg freezing, a procedure to extract and freeze a woman’s eggs. Black women are about two times more likely than white women to have fertility issues, but only half as likely to receive any treatment. When using infertility treatments such as fertility drugs or in vitro fertilization, Black women were three times more likely to lose their baby soon before or after birth than their white counterparts, according to a study by the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Even with my birth, my mother had to have an emergency delivery, a cesarean section. I was born at 7 months, a preemie.
After receiving the PCOS diagnosis, I felt the possibility of birthing a child had been snatched away from me. Instead of thinking about childbirth, I did as I always do: I buried myself in work, traveled more, and sought every opportunity to advance my career.
Learning of a life-long condition can cause binge eating, anxiety and depression for individuals with PCOS, said Dr. Raynia McGee, an adult psychiatrist. Women with PCOS experienced more severe symptoms of these mood disorders compared to women without PCOS. Sixty percent of women 24-years old and under reported moderate to severe levels of psychological distress after a diagnosis of PCOS and endometriosis, a 2016 study found.
McGee said it’s important for practitioners to take the time to listen to patients and to thoroughly screen patients because PCOS affects every aspect of the mind and body.
“The treatment for PCOS should be multifactorial or multipronged where your gynecologist is involved, endocrinologist is involved, psychiatrist involved, therapist and nutritionist,” she said. “These symptoms can be treated and controlled, and women can get their lives back. They do not have to suffer through this alone.”
As the telemedicine visit with my D.C. doctor ended, I said goodbye, closed my laptop, stared out the window of my apartment, and cried quietly.
On one hand, I felt a sense of relief. I had found the answer I had been longing for for nearly three years — the cause of my pain and abnormality. I also reclaimed agency over my body.
But the satisfaction lasted only for a second — as I became overwhelmed by what the future would look like. Women with PCOS usually have to receive care from a variety of health professionals: a primary doctor, dietician, therapist, endocrinologist, and dermatologist, to name a few. I could already feel the exhaustion from the endless and costly health visits, screenings and tests.
I closed my eyes and sighed deeply.
Although I had finally found the answer, the journey still continues.
A previous version of this story mischaracterized Joanne Suarez’s diagnosis.
If you or someone you know are in crisis, text the PCOS Crisis Line: Text PCOS to 741741.