After a process that included more than 22,000 people from more than 50 organizations and thousands of patients, a troubling condition has been renamed to improve the lives of the 1 in 8 women who endure it.
Polyendocrine metabolic ovarian syndrome, previously named polycystic ovary syndrome, or PCOS, affects 170 million women worldwide. Experts–including clinicians, medical researchers, and thousands of patients—have argued for decades that the name “polycystic ovary syndrome” was a misnomer because it implied the problem centered around ovarian “cysts.”
After decades’ worth of research and effort involving 56 academic, clinical, and patient organizations–and incorporating more than 14,000 responses from patients and health professionals worldwide– the condition is now known as polyendocrine metabolic ovarian syndrome.
Dr. Anila Ricks-Cord, a board-certified OB/GYN based in Texas, understands the condition well, having seen it first-hand in some of her patients. She says the name change reflects a better understanding of the problem.
“They changed the name to poly-metabolic ovarian syndrome – PMOS – because the condition actually is metabolic,” says Ricks-Cord, a Black woman. “One’s ovaries are the starting point, but this is a hormonal imbalance that involves more than just your ovaries.
PMOS is one of the most common hormonal disorders affecting women of reproductive age, disrupting the body’s ability to ovulate regularly and often triggering a cascade of symptoms that can include irregular periods, infertility, weight gain, acne and excess facial hair. The condition is also closely linked to insulin resistance, increasing the long-term risk of Type 2 diabetes, heart disease and other chronic illnesses — making it far more than a reproductive health issue.
For Black women, the stakes can be even higher. Research suggests Black women with PCOS are more likely to experience delayed diagnosis, more severe metabolic complications and higher rates of obesity, hypertension and diabetes, while longstanding disparities in health care access and medical bias can make it harder to receive timely treatment.
The result is a condition that often goes untreated for years, compounding both reproductive challenges and broader health inequities.
Clinicians, medical researchers, and thousands of patients have argued for decades that the name “polycystic ovary syndrome” was a misnomer because it implied the problem centered around ovarian “cysts.” The name change is intended to guide clinicians, insurers, and others to focus on treating the previously overlooked multisystem nature of the condition.
The inaccurate name led clinicians to overlook the many endocrine and metabolic issues related to the condition, and contributed to delayed diagnosis, stigma, and inadequate treatment. Research found the inaccuracy also meant up to 70% of those with the condition received a delayed diagnosis or partial treatment.
In the U.S., Black women are more likely than white women to develop PMOS, develop it at earlier ages, and develop cardiovascular and metabolic issues.
Word in Black asked Ricks-Cord about the condition and what Black women should know when speaking to their doctor. The interview has been edited for length and clarity. This article should not be considered as individual medical advice.
WIB: What is so important about understanding the name change of this syndrome — and what tools do women need when they discuss it with their doctors?
Dr. Anila Ricks-Cord: They’ve recently changed the name from polycystic ovarian syndrome, or PCOS, because the root problem doesn’t come from actual “cysts.” They’re follicles that never finished maturing and just sat in stasis, in limbo. They changed the name to poly-metabolic ovarian syndrome – PMOS – because the condition actually is metabolic. One’s ovaries are the starting point, but this is a hormonal imbalance that involves more than just your ovaries.
Just having this syndrome leads to a whole cascade of related risks. PMOS triggers excess testosterone production and quite often an increased risk of diabetes because of insulin resistance. As Black women, we are actually more insulin resistant, more likely to develop the condition before age 30, and more likely to develop metabolic syndrome as a result. Picture a woman who is solidly built, who has hair on her top lip and chin hairs, or maybe even a 5 o’clock shadow — she probably has excess testosterone, and if she also has irregular menstrual cycles, she probably has PMOS.
WIB: How does a doctor diagnose and set a treatment plan for PMOS patients?
Dr. Ricks-Cord: We focus on the “string of pearls” as a diagnostic tool seen on an ultrasound; that’s the image doctors want to see. Ovaries are filled with what are called follicles. The uterus has a lining that replenishes itself every single month. For people who have regular menstrual cycles, every single month there’s basically a phone conversation that takes place between your brain and your ovaries, where your brain says, “Hey girl, we’re trying to get pregnant.” Under the influence of your brain, your ovaries go about making estrogen and progesterone to make the lining of your uterus nice and fluffy, so that if you get pregnant, the pregnancy can dig into the wall like a soft, comfy blanket.
The body will release follicles — one becomes the biggest and juiciest and pops out like a super gumball and sits in your pelvis, waiting to be fertilized. If you don’t get pregnant, that lining dies and peels off. Normally, that’s considered to happen every 28 to 35 days; some studies or references suggest every 21 to 38 days. But if you don’t have a cycle that occurs at least every 38 days, you have abnormal menstrual cycles, and that’s the first red flag.
But with people who have PMOS, the lining gets thicker and thicker, and it only sheds after it outgrows its blood supply — so three, six months later, it’s still been getting thicker. These follicles get stuck and on a pelvic ultrasound it literally looks like a string of pearls inside the ovary. Then when it finally outgrows the blood supply then the woman gets a menstrual cycle that’s incredibly heavy and lasts for multiple days. These follicles get stuck and on a pelvic ultrasound it literally looks like a string of pearls inside the ovary.
That’s what sets her up for problems such as endometrial hyperplasia (thickening of the uterine wall), which raises risk for endometrial cancer.
I think, particularly in the years I’ve been caring for women — and particularly in our community — people don’t know what’s a “normal” menstrual period. If you don’t have a period that happens at least every 38 days, that’s a flag you need to pay attention to.
WIB: Many of us have seen family members, friends, or acquaintances displaying these symptoms — often for years. When should we recognize this pattern signals a bigger problem?
Ricks-Cord: When your hormones are in check—and you’re not in perimenopause or menopause— having hair on your top lip, your chin, your chest, or thick hair on your thighs — that’s all a sign of excess free testosterone, which is not your friend. We make testosterone anyway, but it’s supposed to be in small, balanced amounts. Excess hair growth is a sign that you’re out of balance.
Another sign a lot of us have seen in ourselves and not paid attention to is acanthosis nigricans — the hyperpigmentation or dark ring around women’s necks that is actually a sign of excess insulin. That dark ring is definitively a marker for diabetes, but it goes along with PCOS/PMOS as well. The trouble with undiagnosed PMOS is that it puts you at risk for diabetes, high cholesterol, and hypertension.
Along with PMOS causing high testosterone you can also have hair loss. I’ve taken care of patients who wear wigs, and when they take the wigs off, you can see what appears to be alopecia — but it’s alopecia that’s testosterone-derived. The last patient I took care of who had this issue had been overlooked by her doctor for years and years and years.
WIB: Explain how the hormonal issues affect the entire body—not just the reproductive system.
Ricks-Cord: People who have PMOS live, over time, in a pro-inflammatory environment, and inflammation is not your friend — it’s the basis of all kinds of disease. Over time, high insulin resistance is almost like being on the phone trying to talk to someone who can’t hear you, so you keep turning up the volume. That’s the conversation your body is having when you’re insulin resistant.
Outside of sugar causing cardiovascular issues, it’s also going to make your cholesterol go haywire. What they find specific to Black women — along with the fact that we’re more likely to be insulin resistant — has to do with things like body mass index. If your BMI is greater than 30; or if you measure your abdominal circumference with a tape measure and it’s more than 35 inches around your belly; if your systolic (top number) blood pressure is greater than or equal to 130, or your diastolic (bottom number) is greater than or equal to 85 — those are markers of insulin resistance.
For Black women, the cardiovascular risk is real. If we have PMOS, we often transition into metabolic syndrome to diabetes, high blood pressure, high cholesterol, and a heart attack or stroke. It kills us. And as it relates to pregnancy: PMOS is a form of infertility — you can still get pregnant, we just don’t always know when your cycles are going to show up. Ideally, if you have PMOS and plan on having children, optimize your weight and your blood sugar before you get pregnant. If you don’t, having PMOS alone is enough to increase your risk of gestational diabetes, hypertension in pregnancy, preeclampsia, or preterm birth.
WIB: So a woman should be telling her doctor specifically what is happening with her menstrual periods — duration, intensity, and other details — instead of assuming what’s “normal.”
Ricks-Cord: Exactly. If you realize you have it, go get seen, and ask specifically: “What are we doing to control this menstrual cycle — are we shutting it down or making it flow? What are we using to make me less insulin resistant? What does my hemoglobin A1C look like? What does my cholesterol look like? What does my blood pressure look like? What’s my vitamin D level? Because if your sugar is high enough to put you at cardiovascular risk, you’re going to need medication to get it under control until diet and lifestyle changes take effect. If your blood pressure is 130 or higher on top, or 80–85 or higher on the bottom, you need medication to get that under control until your lifestyle changes make a difference.
And I’ll add a couple of other things: check your hemoglobin A1C, your fasting glucose, your total cholesterol, your BMI, and how much you weigh. The trick is that PCOS is a lifelong condition, but you can modulate its symptoms and the evolution of the disease through lifestyle modification. What kind of starches, vegetables, and protein do you eat? Do you eat foods with a low glycemic index? Foods with a low glycemic index won’t shoot your blood sugar way up and then give you the crash that follows. Do you eat a lot of processed food? This is going to ruffle some feathers, but: stay away from the “white foods” — white sugar, white rice, white potatoes — as well as anything that’s highly processed.
You can walk five out of seven days a week, 30 minutes, brisk — like it’s a Black Friday sale and there’s a lady trying to get to a sweater before you do, and you need to beat her there. That kind of brisk walking is actually going to pull sugar out of your bloodstream to feed your muscles, and it will help bring down your A1C.
So many of us assume the things we’re experiencing are normal, and because it’s not visibly compromising us — but we’re saying, “I just have a headache every day” — and we think that’s okay.
But over time, this is what kills us.
RELATED: Cardiovascular Disease Deaths Are Down—but Blacks Still Face the Worst Outcomes
