Bontle Mocha Moriki starts and ends with pain every day.
The 32-year-old Atlanta resident was diagnosed with endometriosis in 2019 and developed uterine fibroids a year later. Then, in 2024, she was diagnosed with what is now called polyendocrine metabolic ovarian syndrome. “If someone’s pain is zero, my pain is three every day and then it only goes up from there,” she said.
Until about two months ago, PMOS was known as polycystic ovarian syndrome, but the name was changed to better capture the symptoms and the possibility that it is a male-type syndrome. Hormonal health problems usually begin around the time of your first menstrual cycle. Women with this condition commonly experience irregular menstrual periods, facial hair, pain, weight gain, and symptoms that are thought to be ovarian cysts. Moka Moriki said the syndrome also caused bouts of depression.
Experts hope the new name will increase awareness and lead to faster diagnosis of the syndrome. In particular, women of color are twice as likely to have PMOS compared to white women and often go undiagnosed.
Black women are more likely to experience more severe symptoms such as hirsutism and high blood pressure. Hispanic and Latina women experience more severe metabolic complications than other populations. Both groups of women experience delays in diagnosis, barriers to accessing care, and low health insurance coverage. It also increases the risk of mood disorders.
The new name for PCOS is PMOS. It’s a small text change that required an extensive scientific process.
“It’s been a real roller coaster,” Moka-Moriki said. “Sometimes I felt really, really sad, more than usual. The pain was always there, but it was mainly due to mood swings. Sometimes I even felt suicidal and felt like I wasn’t myself.”
Last October, Moka Moriki felt constantly tired. Initially, she thought it was due to iron or vitamin D deficiency. For the next two weeks, it felt like I was walking around with a weighted blanket. Suddenly she felt a sharp pain on her right side. She thought it might be an ectopic pregnancy. Or a hole in your lung.
She knew this was different because she had been in pain for years. But she still thought it was a new kind of period pain. When she finally arrived at the hospital several weeks later, doctors told her that a cyst on her ovary had ruptured. Shortly thereafter, her uterine fibroids returned.
“When it comes to Black women, we’re expected to be more resilient, more tolerant of pain, and we tend to get ignored a little bit,” she said. “Usually a large group of black women shouts from the top of a mountain that this is what we are working on in our communities.”
“Every woman experiences different symptoms with different degrees of severity,” said Margaret Lippincott, an internist and director of the Multidisciplinary Treatment Center for Polyendocrine and Metabolic Ovarian Syndrome at Massachusetts General Hospital. Women of color with PMOS are at higher risk for pregnancy-related complications such as diabetes, high blood pressure, sleep apnea, high cholesterol, gestational diabetes and pre-eclampsia.
“A lot of the research on PMOS doesn’t include women of color,” she says. “Unfortunately, one of the things we’ve learned from the medical literature is that the voices of people of color often go unheard.”
Diagnosis of PCOS is delayed
More than 5 million women and girls of reproductive age live with PMOS in the United States. The World Health Organization estimates that up to 70% of people with the disease are undiagnosed.
Helena Teed, a professor of women’s health at Australia’s Monash University who contributed to the reassessment of the syndrome, said the new classification of the syndrome as an endocrine disease highlighted its potential impact on metabolism, cardiovascular function, skin and mental health. “This will lead to new ways to treat this condition, but it will take time,” she said.
Why ovarian syndrome has a new name: Men also appear to have polycystic ovary syndrome
Because there is no single diagnostic test to confirm PMOS, symptoms often overlap with other endocrine disorders, which further exacerbates the burden on Black and Latina women. Currently, diagnostic guidelines are based on exclusion. The doctor will check to see if the patient exhibits two of the three criteria for ovaries with irregular or absent ovulation, hyperandrogenism, or accumulation of small follicles.
Lippincott explained that the extra follicles that grew on the ovaries were once thought to be fluid-filled cysts, hence the syndrome’s old name. However, only about a quarter of women have extra follicles. And research shows that many doctors have knowledge gaps when it comes to diagnosing and treating the condition. In one survey, more than a third of doctors associated “ovarian cysts” with PMOS.
As a result, this years of miseducation delayed diagnosis. And the inclusion of polycystic in the original name led doctors to focus on the cystic symptoms of the condition, even when patients were experiencing metabolic and fertility problems associated with PMOS.
“For me, it wasn’t about the ovaries,” said Antelia Bruce, a women’s health nurse practitioner in Houston. “Metabolic dysfunction was always an issue as I struggled with weight gain, infertility and hirsutism.”
Looking back, Bruce said her symptoms started at age 18. But she wasn’t officially diagnosed until she was 25. Soon after, she was prescribed metformin, a type 2 diabetes drug that lowers insulin and blood sugar levels and helps regulate menstrual cycles. She then switched to Fasiga, another type 2 diabetes drug, took more birth control, and eventually stopped the prescription altogether. One made her use the bathroom constantly, one gave her constant yeast infections, and one didn’t help with weight loss.
“As far as the emptiness of things, that affected my confidence,” the now 39-year-old said. “It had a big impact on me mentally and physically.”
It’s too big. too thin
Sudi Kamose, a schoolteacher in Haines City, Florida, has struggled with her weight since childhood. The adults around her were constantly telling her to lose weight, and she tried to lose weight many times. In her late teens, she noticed irregular menstrual cramps, weight fluctuations, and facial hair growth. Then, when I was 24, I had periods for three months in a row and realized something was wrong.
“I refused to go to the doctor because every time I went to the doctor for something, the doctors showed a lot of weight bias,” she said. Eventually, she went to see a gynecologist who discovered a cyst on her ovary. As a result, Mr. Kamose was diagnosed with PMOS. However, she feels she should have been diagnosed sooner.
For the past 11 years since her diagnosis, she has been prescribed birth control pills and metformin. Recently, her endocrinologist, neurologist, and pulmonologist all visited different institutions and recommended that she try GLP-1 drugs. Kamose declined, citing other health conditions and concerns about side effects.
“I never lift my weight,” she said. Kamose, now 35, said her connection with a nutritionist has been a big help in managing her condition.
Who benefits from classifying obesity as a disease?
Lippincott, an endocrinologist in Massachusetts, said there are several issues underlying the way doctors view weight. “Obesity is not, and never has been, included in the diagnostic criteria for PMOS,” she says.
She explained that PMOS is a polygenic disease, so there are multiple risk factors that contribute to weight gain. For example, many women with PMOS have high fasting insulin levels, regardless of their weight, Lippincott said. And many doctors 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 doctors overlook and underdiagnose PMOS patients who live in large bodies. She has treated more than 500 PMOS patients over the past 13 years, and hundreds more who had symptoms but no formal diagnosis.
But it’s not just larger women who get fired, she says. “The term Lean PMOS is also often used,” she says. “Providers won’t think it has PMOS because of its appearance.”
She distributes her weight in private practice. Instead, she focuses on her patients’ nutrition, balancing blood sugar levels, reducing inflammation, and supporting healthy menstrual cycles.
“I’m really happy about the name change,” Brooks said. “My approach won’t change, but I think the provider’s perspective could change.”
Sudi Kamose of Haines City, Florida, says doctors focused on her weight rather than her PMOS symptoms.Davon Blanker for STAT
Long live PMOS. Well, what is it?
Andrea Medina-Alvarado, a Texas policy advocate at the National Latina Reproductive Justice Institute, was diagnosed with PCOS (now PMOS) late last year. For two years, the 27-year-old struggled with weight gain, hair growth and the cost of accessing medical care.
With Immigration and Customs Enforcement raids now widespread across the country, many Latinos and other immigrant communities are afraid to leave their homes to buy groceries, access health care or go to work, she said. And millions of people are expected to lose access to Medicaid next year under the One Big Beautiful Bill Act. She worries that many Latinas 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 when I was talking to people in English, especially when I was talking to people who spoke Spanish,” Medina-Alvarado said. “The general public doesn’t know about PCOS because it’s not talked about much. The name change better reflects the condition itself, but we need more messaging and more community conversations.”
One way she hopes to begin education is through community health workers. She also calls on partners in the social justice movement and Texas legislators to raise awareness of PMOS.
Lippincott noted that the need to inform more women of color about PMOS reflects a long-standing neglect 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’re not doing that enough.”
STAT’s chronic health coverage is supported by a grant from. bloomberg philanthropy. our financial supporter It has no role in any of our journalism decisions.
