What doctors missed

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MYRNA BROWN, HOST: Coming up next on The World and Everything in It: renaming a disorder.

The condition known for almost 100 years as Polycystic Ovary Syndrome, PCOS, is getting new attention due to a name change. 

It affects about one in eight women, causing symptoms ranging from irregular menstrual cycles to increased risk for thyroid and heart disease.

MARY REICHARD, HOST: But it will now be known as Polyendocrine Metabolic Ovarian Syndrome, or PMOS, and researchers hope the new name will mean changes in both treatment and the stigma surrounding it.

WORLD’s Mary Muncy reports.

MARY MUNCY: Ami McNay started having irregular menstrual cycles and odd symptoms when she was 14. A doctor diagnosed her with endometriosis at 19… but it took until she was in her mid-20s to be diagnosed with what’s now known as PMOS.

MCNAY: I had very irregular cycles that were very painful.

Someone with PMOS has at least two of three symptoms. Those symptoms are irregular or no ovulation, excess androgen hormones like testosterone, and cysts on the ovaries or excess anti-Mullerian Hormone.

Doctors formally identified the disorder in 1935 after seeing ovarian cysts on women with irregular cycles. Hence, the original name, "polycystic ovary syndrome." 

But recently, doctors have started recognizing a metabolic component to it.

McNay had irregular cycles and cysts on her ovaries. In one sense, she was lucky. Her doctors were ahead of the curve.

MCNAY: They seemed to recognize that it was some kind of metabolic disorder, even 30 years ago.

But that doesn’t mean they had solutions.

The most common treatment is birth control, which suppresses hormones. But McNay didn’t want to go that route. Her doctors tried prescribing medication for insulin resistance, but she felt lethargic and didn’t have an appetite. 

She says her doctors did their best, but there wasn’t much guidance for PMOS in the 90s, so she did a lot of trial and error on her own.

MCNAY: I decided, ‘Let me take myself off this medicine,’ and started reading some things about PCOS and just thought, ‘Let me try to manage this on my own.’ And so I've basically done that for the last 25 years.

Pediatric endocrinologist Melanie Cree says that’s a common story, and why she started working on changing the name.

CREE: The new name is ‘polly endocrine,’ because it's not just those male hormones, androgens, but also the hormone insulin. And when you have this combination of high testosterone and high insulin, it predisposes the individual to getting metabolic disease.

She says the name "polycystic ovary syndrome" focused too much on cysts and not enough on hormones. It took years for some women to get a diagnosis, and even then, they weren’t screened or treated for metabolic conditions.

Cree started working on this name change 14 years ago. She and other women’s health specialists started with surveys of doctors and patients all over the world.

CREE: People thought the name was really restricting treatment and diagnosis.

Over 80 percent of the patients surveyed thought the name should change completely. So they started doing phone calls with global medical professionals. They considered linking the name to fertility, but that affects fewer women with PMOS than those with metabolic disorders, and:

CREE: Especially in places where you've got arranged marriages, or this is very culturally important for a woman to be a mother, if she is labeled as not being able to have a baby, she may not be marry-able, and in some countries could actually be at risk of being put to death.

The group published their findings this month and is now working to implement them.

That will be a three-year, eight-step process. They’re currently on steps one and two: publishing their research and creating resources for providers. Later, they’ll start working on changing the medical billing codes.

She hopes more providers outside of gynecology will start learning about PMOS and help guide their patients. That would mean patient-facing changes could come soon.

CREE: The things that I think will change and can change right now is women are not getting tested for metabolic disease because they are often told "This is a reproductive condition. Take these birth control pills and come back when you want to get pregnant."

A common PMOS symptom is weight gain. She says insurance companies often resist covering weight loss medications for women with PMOS. But if they’re screened for factors that often accompany PMOS, like extra fat in the liver or type two diabetes, they could get weight loss medications for those diseases.

CREE: If they're not being tested for the disease, we can't treat it. So that's what I really hope we see immediately is appropriate metabolic screening for all patients with this condition.

And that’s insulin resistance screening for all patients, regardless of body size.

CREE: The risks for all of these are increased in all women with these conditions, not just those who struggle with weight.

Cree says the next research questions will be about how PMOS affects women in and around menopause.

McNay is approaching that phase and is trying to pick through her symptoms.

MCNAY: It's a little bit hard to determine what things are happening in my body now that could be still related to PCOS.

She has three daughters, and so far, none of them have been diagnosed with PMOS, but she thinks the reclassification will help guide them if they ever are.

MCNAY: My hope is that because of the reclass, doctors will be quicker to recognize symptoms, to refer to knowledgeable practitioners who can help pave a path for women who are struggling with this syndrome.

Reporting for WORLD, I’m Mary Muncy.

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