Bontle Moka-Moliki starts and ends every day in pain.

The 32-year-old Atlanta resident was diagnosed with endometriosis in 2019. A year later came fibroids. Then in 2024 she was diagnosed with a condition now called polyendocrine metabolic ovarian syndrome. “If someone is at a zero, my pain is at a three every day, and then it’s only up from there,” she said.

PMOS was known as polycystic ovarian syndrome until about two months ago, when it was renamed to better capture its symptoms and to allow for a possible male form of the syndrome. The hormone health issue typically starts around the time of the first menstrual cycle. Women with the condition commonly experience irregular periods, facial hair, pain, weight gain, and what were assumed to be ovarian cysts. Moka-Moliki said the syndrome also sent her into bouts of depression.

Experts hope the new name will increase recognition and lead to faster diagnosis of the syndrome. Women of color, in particular, experience double the prevalence of PMOS compared to white women, and often go undiagnosed.

Black women are more likely to experience more severe symptoms like hirsutism and hypertension. Hispanic and Latina women experience more severe metabolic complications compared to other populations. Both groups of women experience delayed diagnosis, barriers to access health care, and low rates of health insurance coverage. They also have an increased risk of mood disorders.

“It’s just been a roller coaster,” Moka-Moliki said. “I would feel really, really sad, more than usual. The pain has always consistently been there, but it was mostly the mood swings. At times I’d even feel suicidal, and I felt just not myself.”

Last October, Moka-Moliki was constantly fatigued. Initially she chalked it up to low iron or low vitamin D. Then for two weeks she felt like she was walking around with a weighted blanket. Suddenly, she felt a sharp pain on her right side. Maybe, she thought, an ectopic pregnancy. Or a punctured lung.

Due to constant bouts of pain over the years, she knew this was different. But she still thought it was just a new kind of period pain. When she finally made it to the hospital, weeks later, doctors told her a cyst in her ovaries had ruptured. Shortly afterward, her fibroids came back.

“When it comes to Black women … we are expected to be more resilient, have a higher pain tolerance, and we tend to be overlooked a little bit more,” she said. “We usually will have a large group of Black women shouting from the mountaintops that this is what we’re dealing with in the community.”

Every woman experiences different symptoms at different severities, said Margaret Lippincott, physician and director of the Multidisciplinary Care Center for Polyendocrine Metabolic Ovarian Syndrome at Massachusetts General Hospital. Women of color with PMOS are at an elevated risk for diabetes, high blood pressure, sleep apnea, high cholesterol, and pregnancy-related complications, including gestational diabetes and preeclampsia.

“A lot of the research on PMOS has not [included] women of color,” she said. “Unfortunately, the one thing we have learned from medical literature is that individuals of color are often not listened to.”

PCOS delayed diagnosis

More than 5 million women and girls of reproductive age in the United States live with PMOS. The World Health Organization estimates that up to 70% of people with the condition are undiagnosed.

Helena Teede, a professor of women’s health at Monash University in Australia who helped reassess the syndrome, said its new classification as an endocrine condition highlighted its potential impact on metabolism, cardiovascular function, skin, and mental health. “This will lead to new ways of treating the condition, but it will take time,” she said.

With no single diagnostic test to confirm PMOS, symptoms often overlap with other endocrine disorders, and this exacerbates the toll on Black and Latina women. Currently, diagnostic guidelines are based on exclusions. Physicians check to see if a patient presents with two out of the three criteria: irregular or absent ovulation, hyperandrogenism, or ovaries with an accumulation of small follicles.

The excess follicles that have grown on the ovaries, Lippincott explained, were once thought to be fluid-filled cysts, hence the syndrome’s old name. Yet only about a quarter of women present with extra follicles. And research shows many physicians have gaps in knowledge when it comes to diagnosing and treating the condition. In one survey, more than one-third of physicians associated “cysts on ovaries” with PMOS.

As a result, this longstanding miseducation delayed diagnosis. And including polycystic in the original name prompted physicians to focus on the cystic presentation of the condition even when patients experienced the metabolic and fertility issues linked with PMOS.

“It was never about ovaries for me,” Annterria Bruce, a women’s health nurse practitioner in Houston said. “It was always about the metabolic dysfunction because I had suffered with weight gain, infertility, and hirsutism.”

Looking back, Bruce said, her symptoms started at 18. But the official diagnosis didn’t come until she was 25. Soon after, she was prescribed metformin, a medication for type 2 diabetes that helps lower insulin and blood sugar levels and regulate menstrual cycles. Later, she switched to Farxiga, another type 2 diabetes drug, then came birth control, and eventually she quit prescriptions altogether. One made her constantly use the bathroom, another gave her constant yeast infections, and the other didn’t help with weight loss.

“It affected my confidence when it came to the vanity of things,” the now 39-year-old said. “It really affected me mentally and physically.”

Too big. Too thin

Sudi Kamose, a schoolteacher in Haines City, Fla., has struggled with her weight since childhood. The adults in her life constantly told her to lose weight, and she repeatedly tried. In her late teens she noticed irregular painful periods, fluctuating weight, and facial hair growth. Then at 24, she had a period for three months straight, she knew something was wrong.

“I refused to go to the doctor because every time I went for something they exhibited a lot of weight stigma,” she said. Eventually, she went to see a gynecologist, who found cysts on her ovaries. As a result, Kamose was diagnosed with PMOS. But she feels she should’ve been diagnosed earlier.

In the last 11 years since her diagnosis, she’s been prescribed birth control and metformin. Recently, her endocrinologist, neurologist, and pulmonologist on separate health care visits all recommended she try a GLP-1 medication. Kamose declined because of her other health conditions and fear of side effects.

“I never bring up my weight,” she said. Kamose, now 35, said connecting with a nutritionist has significantly helped manage her condition.

Lippincott, the Massachusetts endocrinologist, said there are several issues underlying how physicians view weight. “Obesity is not and has never been part of the diagnostic criteria of PMOS,” she said.

Because PMOS is a polygenic condition, there are multiple risk factors that overlap with weight gain, she explained. For example, many women with PMOS have high fasting insulin levels, Lippincott said, no matter what their weight is. And many physicians know that long-term insulin resistance can contribute to weight gain.

Alexis Brooks, a women’s health dietitian in Washington, D.C., isn’t surprised that physicians overlooked and underdiagnosed PMOS patients living in larger bodies. She’s treated more than 500 patients with PMOS in the last 13 years, plus hundreds more who presented with symptoms but didn’t have an official diagnosis.

Yet it’s not just women in larger bodies who are dismissed, she said. “A term that is also thrown around is lean PMOS,” she said. “Providers won’t even think they have PMOS because of the way they look.”

In her private practice, she decenters weight. Instead, she focuses on her patients’ nutrition, balancing blood sugar levels, lowering inflammation, and supporting a healthy menstrual cycle.

“I’m really glad the name change has happened,” Brooks said. “It doesn’t change my approach, but I think it can change the way providers view it.”

Long live PMOS. Now what?

Andrea Medina-Alvarado, a Texas policy advocate at the National Latina Institute for Reproductive Justice, was diagnosed with PCOS (now PMOS) late last year. The 27-year-old struggled for two years with weight gain, hair growth, and the cost of accessing health care.

Now, with Immigration and Customs Enforcement raids sweeping across the country, she said, many Latinos and other immigrant communities are afraid to leave their homes to go grocery shopping, access health care, or go to work. And under the One Big Beautiful Bill Act, millions are expected to lose access to Medicaid next year. She fears many Latina women without health insurance will continue to live with devastating symptoms and little relief.

“A lot of people didn’t know what PCOS was, and that was if I was talking to people in English. Let alone talking to people who are Spanish speakers,” Medina-Alvarado said. “The general public isn’t aware of PCOS because it hasn’t been talked about that much. Now with the name change, it’s a better reflection of the condition itself, but there needs to be a lot of messaging … and conversations in communities.”

One way she hopes education will begin is through community health care workers. She also calls on social justice movement partners and Texas legislators to bring more awareness to PMOS.

Lippincott noted that the need to inform more women of color about PMOS reflects the longstanding dismissal of women’s health in general.

“We need to value women’s health. We need to invest resources in research, education, and clinical support,” she said. “What you’re seeing is a reflection that we have not done enough of that.”

STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.