Two years ago, when she started experiencing increasingly irregular menstrual cycles, Abiola, 28, went to her gynecologist with her concerns. “Honestly, my biggest issue was that I just would have a period maybe once every six months, at times, or only every other month,” she said. She wanted relief from strong cramps and excessive bleeding.

Abiola was diagnosed in 2023 with polycystic ovary syndrome (PCOS), a hormonal disorder that can cause small cysts to develop on the ovaries. In the US, one in 10 women of reproductive age live with PCOS. It is considered a metabolic reproductive endocrine disorder, which means that it can cause infertility and involve other chronic conditions such as insulin resistance, diabetes, and cardiovascular disease.

Even though it’s the most common endocrine disorder among women aged 15 to 49, PCOS is underfunded in research across the country, and understudied among Black women. PCOS disproportionately affects Black women, as they have higher rates of the metabolic symptoms associated with the disorder. “It’s been shown that Black women aren’t listened to. So I think that that is going to contribute to the issue,“ said Dr. Lisa McLeod, a practicing OB-GYN and doctor of osteopathic medicine at Cherokee Women’s Health Specialists in Woodstock, GA.

The primary characteristics of PCOS include irregular or no menstrual cycles, hyperandrogenism (an excess of “male” sex hormones that can result in unwanted hair growth, male pattern baldness, or acne), and polycystic ovaries.

When Ken, 31, received her PCOS diagnosis at age 18, she worried about the excess hair on her upper lip, her struggle to lose weight even after working out, and the extreme fatigue and anxiety that sometimes bogged her down. “All of this stuff is happening emotionally, physically. It just didn’t feel good at all,” she said.

Abiola first heard of PCOS when her older sister, who had been diagnosed with the condition in high school, told her that it might run in their family. PCOS can be challenging to diagnose because providers may rely on criteria that use different combinations of two of the three features of the disorder. Women with PCOS do not all show the same symptoms. Because Abiola only fit one of the characteristics of PCOS in her teen years, her own diagnosis did not come until she had irregular periods in her mid-20s. Sharing family medical history can be an important tool to spread awareness for a condition that up to 70% of women may not realize they have.

But women can face the challenge of a PCOS diagnosis with the help of a caring team of providers that may include an OB-GYN, a dermatologist, an endocrinologist, and other specialists.

Dr. Carmina Charles, an endocrinologist at AdventHealth Medical Group Diabetes and Endocrinology in Apopka, Florida, works at a clinic that helps women with PCOS find the best treatment options for them. “I strongly believe that lifestyle modification is critical. Even though there is no cure, I have personally seen patients empowered by the knowledge they receive during their visits to tackle the disease and improve their symptoms. Each patient invests in what they deem important,” she said.

For Ken, addressing her hirsutism, or excess facial hair, changed the game for her well-being after she experienced shame about her condition. “I have an endocrinologist now, and we have had more transparent conversations about hair growth, because that was super annoying. And now I do laser, which has been even an extra confidence booster, and we have talked about children, and the goal is to get my periods more stable,” she said. She also incorporates a fellow counselor and physical activity as part of her self-care.

Abiola’s provider suggested lifestyle changes and birth control as two approaches of treatment for her PCOS. Finding a pill with the right hormone dose for her needs helped her put PCOS on the sidelines of her life. She went from “seven-day periods with heavy bleeding every day to maybe two, three days of very light spotting, minimal cramps as well.” As part of her treatment for PCOS, she said her birth control helps her manage her condition and maintain the aspects of her life she values, like having a sex drive and feeling emotionally present.

“Especially when I’m able to regulate my weight better, I tend to have almost no symptoms. And then, of course, with the birth control, the period symptoms are kind of a non-issue,” Abiola added. Because she wants to remain child-free, a birth control pill that stopped her period helped both her PCOS and long-term goals.

Ken, who is partnered with a woman, has concerns about her ability to conceive a child and also safely give birth as a queer, Black woman in the near future. Although PCOS is a leading cause of fertility issues in women, Dr. Charles emphasized that each woman’s body is different. “I think the biggest misconception is that pregnancy is not achievable and that nothing can be done to assist with PCOS,” she said. Working with a healthcare provider may help to determine additional causes of infertility or potential lifestyle changes to address menstrual dysfunction.

Beyond guidance from providers, community support and self-acceptance are crucial for women with reproductive health issues. It’s helped Ken feel confident in her skin, in a body that she’s grateful to for keeping her alive during the pandemic. “I’m really happy just to be able to move my body and to be alive,” she said.

Dara T. Mathis is a freelance writer who reports on reproductive and mental health, parenting, and Black history. A recipient of the 2024 American Mosaic Journalism Prize, she has contributed health-focused writing to SELF Magazine and the New York Times. Her work on this initiative supports Level The Court’s purpose to empower Black women to own their reproductive health journeys.