The condition formerly known as polycystic ovarian syndrome, commonly referred to as PCOS, has a new name: polyendocrine metabolic ovarian syndrome.
PMOS, as it’s now called, is a set of signs and symptoms that often go together, including irregular, extra-long menstrual cycles that can be 35 or more days apart, or cycles that come more frequently and include heavy bleeding. Some don’t get their periods at all.
Other common PMOS symptoms include hair growth in unwanted areas like the face, chin, and stomach, as well as sleep issues, weight gain, and higher risk of developing type 2 diabetes.
Though an estimated 1 in 8 women worldwide have PMOS, it is poorly understood by doctors and patients alike. Its old name symbolized this problem: The condition is more about hormones than it is about ovaries.
The 14-year global renaming effort involved more than 50 patient and professional groups, and included more than 22,000 surveys of patients and medical professionals. Experts hope the new, more scientifically accurate designation will have a big impact on the understanding of PMOS and lead to faster diagnoses and better treatment.
Where did the name PCOS originate?
The condition was originally named Stein-Leventhal syndrome in the 1930s after the two gynecologists who noticed that women with this combination of symptoms also had ovaries that appeared to have lots of little cysts. They thought these bumps around the edges of the ovaries almost looked like a string of pearls.
Doctors referred to these ovaries as “cystic,” which led to the name PCOS.
But that name was confusing. What the doctors were likely actually seeing were fluid-filled follicles.
People with ovaries are born with all the eggs they are ever going to have (about 1 to 2 million). After puberty, a bunch of eggs mature in follicles each month. (This is part of what happens in the first few weeks of your menstrual cycle.) Then one dominant egg pops out and travels down the fallopian tube; that’s ovulation.
That one egg maybe, just maybe, gets fertilized during sex. Or it doesn’t, you get your period, and the cycle starts all over again.
For people with PMOS, this process can stall in the middle, resulting in multiple fluid-filled follicles that look like cysts. While this is one symptom of the syndrome and part of the criteria for diagnosing it, not everyone with PMOS has this issue. But the name polycystic ovarian syndrome made it seem so.
Many people have ovarian cysts at some point in their lives—including me. Mine was the size of a golf ball, hurt like hell, and was removed along with my left ovary at 3 a.m. one Sunday morning in 2017. But PMOS patients are no more likely to have ovarian cysts than anyone else.
I talked to a few PMOS patients and a reproductive endocrinologist about the condition. A few had these classic cystic ovaries, but Sheyna Horowitz, 49, from New Jersey did not, despite getting “what felt like a million internal ultrasounds” over the years.
What causes PMOS?
PMOS is really more about hormones, including estrogen and testosterone. Insulin also plays a central role, said Dr. Lucky Sekhon a board-certified reproductive endocrinologist, infertility specialist, and OB-GYN at Reproductive Medicine Associates of New York.
One of the underlying issues with PMOS is insulin resistance, Sekhon told me.
The pancreas secretes insulin, and it’s supposed to tell your cells how to effectively store sugar. When someone has insulin resistance, “the cells don’t listen to the signals that insulin is sending to it, and therefore they don’t store the sugars effectively, and the blood sugars kind of hover at a higher level,” Sekhon said.
Trapped in a feedback loop gone wrong, she added, “your body churns out more insulin.”
That higher insulin is part of why people with PMOS are prone to gaining weight, especially around their midsection. The excess insulin can also prompt the ovaries to produce more testosterone, hence the facial hair and oily acne.
But the feedback loop can get even more complicated. The body converts excess testosterone into estrogen. Over time, too much estrogen can increase the risk of uterine cancer. This is especially true for people who don’t ovulate regularly, like those with PMOS, since ovaries create progesterone after ovulation, which can have a protective effect against cancer.
How is PMOS diagnosed?
The new name is designed to pull attention away from the ovaries, so people and providers focus on the hormonal imbalances instead. The goal is to speed up diagnosis and treatment.
Some people only find out they have PMOS when they have difficulty getting or staying pregnant. But others get diagnosed after experiencing symptoms as teenagers, meaning the diagnosis falls to pediatricians, family medicine physicians, or gynecologists.
“By highlighting the metabolic component in the name change, it’s going to be addressed more as a lifelong issue—not just something limited to the ovaries,” Sekhon, who is a clinical professor at New York’s Mt. Sinai hospital, said.
Ideally, this will lead to improvements in diagnosis and management across multiple medical specialties. The actual criteria for diagnosing PMOS had already changed to reflect the reality of the condition, back in 2004.
When diagnosing PMOS, doctors look for indications that you’re not ovulating regularly, which could be an irregular menstrual cycle or lack of a cycle. They’ll also look for signs of high levels of testosterone and other androgens, like facial hair growth or high levels in your blood. And they’ll check the ovaries for enlargement.
Patients must meet two out of three of these criteria to be diagnosed. The evaluation is usually done with some combination of pelvic exams, internal ultrasounds, and blood tests.
PMOS also has a genetic component and is seen more often in certain populations such as Ashkenazi Jews and South Asian women.
One complicating factor in diagnosis is that many patients have already been on the birth control pill or some other form of hormonal contraception for years to regulate their cycles. Hormonal contraception suppresses ovulation, and bleeding during the week of placebo pills mimics a regular menstrual cycle.
When Sekhon talks to new patients, she said, she often has to ask them to remember what their periods were like as teenagers—before going on the pill.
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How is PMOS treated?
PMOS is a lifelong condition, but there are ways to minimize the symptoms.
The birth control pill is one of them. Most patients are also told to change their diet and exercise habits, because losing weight and gaining muscle can help reduce insulin resistance and possibly bring back menstruation. Losing 5 percent of their body weight can help, Sekhon said.
But if the insulin resistance caused the weight gain, telling someone to eat less and work out seems unhelpful at best.
“The more insulin resistant you are, the harder it is to lose weight,” Sekhon said. “All the interventions that you’re instituting—diet, exercise, trying to take care of yourself as best as you can—are not going to be as effective.”
Ashley Donahue, 42, also from New Jersey, told me she started her period at age 9 and that she missed a lot of school because of the pain. She struggled with weight gain her whole life. When, at 27, she went to see a doctor about her PMOS symptoms, Donahue’s doctor told her to try to lose weight.
“You can imagine how upset I was when I was told to lose weight,” Donahue said in an email. “I had been counting calories, I was vegan for a bit to reduce my meat intake, logging workouts, walking everywhere, taking stairs … It was exhausting, degrading, and I felt so misunderstood.”
She wasn’t officially diagnosed with PMOS for four more years—15 years after she started having terrible periods.
This is where medications can be beneficial, Sekhon said. Many PMOS patients take metformin, which is also used to treat high blood sugar in people with type 2 diabetes. In recent years, doctors have also been using GLP-1s like Ozempic or Mounjaro to treat insulin resistance and help PMOS patients lose weight.
Are people with PMOS infertile?
No. People with PMOS often have difficulty getting pregnant because they don’t ovulate regularly or at all: No egg, no pregnancy. PMOS can also impact the quality of some eggs.
But people with PMOS are not infertile.
Sekhon, who is also the author of the new book, The Lucky Egg: Understanding Fertility and How to Get Pregnant Now, says she sees a lot of patients who were told that they will definitely have trouble getting pregnant.
They’ve been “walking around with a cloud over their heads” for years, she said.
That misleading information can also lead to unexpected pregnancies, said Michelle Baird, a midwife in her mid-50s from California.
“As a health-care provider, I see people all the time who were told that they couldn’t get pregnant because of PCOS. I usually am seeing them for prenatal care or abortion services,” Baird, who also has PMOS, said in an email. ”I want everyone to know that some people, but not all people, may have a harder time getting pregnant, but some people do not. Some people with PMOS will get pregnant on their first try, or accidentally.”
What’s in a name?
Every PMOS patient I spoke to was relatively hopeful about their syndrome getting a new name.
“I’ve always felt like PCOS was a ‘tier b’ type of illness that was dismissed and overlooked,” Horowitz said, adding, “Most of my friends have never heard of it.”
To her, the scientific effort involved in the renaming suggested a step in the right direction.
Other PMOS patients were more circumspect.
“The name change will not change whether or not women are diagnosed,” Donahue said, “but I hope the stigma behind it will lessen.”
Ultimately, Donahue added, the real difference would only come with “more money put towards women’s health.”
Sekhon believes all the publicity around the name change (including, I hope, this column) has value in raising more awareness about the condition and its symptoms. In fact, in the last few weeks, she said, she’s already seen more patients booking appointments with her because they think they might have PMOS.
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