Geoff Bennett:

Now new understanding of a health condition affecting millions of women.

An estimated one in 10 women worldwide live with a hormonal disorder long known as PCOS. That's polycystic ovary syndrome. But the condition is getting a new name.

And as Stephanie Sy reports, the change is about far more than terminology. Supporters say it could lead to better diagnosis, treatment and care.

Stephanie Sy:

That's right. PMOS is the new name for the hormonal condition associated with a wide range of symptoms, from irregular periods to excess hair growth and acne, pelvic pain, and even anxiety and depression.

The change was announced in "The Lancet" by an international collaboration of physicians, specialists, and women living with the disorder. Researchers say this new name is more accurate and it's hoped it will lead to better diagnoses and medical care.

Dr. Melanie Cree is a professor of medicine at the University of Colorado Anschutz and a doctor at Children's Hospital Colorado, who was a key lead in the name change, and she joins me now.

Dr. Cree, thank you so much for joining the "News Hour."

You know, it's interesting. The new name doesn't even mention the word cyst. Does this change reflect a new understanding of the disorder or was polycystic ovary syndrome always a misnomer?

Dr. Melanie Cree, Children's Hospital Colorado:

The name was always a misnomer.

There are young eggs that were mistakenly called cysts. There have never been cysts part of the condition.

Stephanie Sy:

Women with PCOS, as you know, have often faced a labyrinth of providers before they even get a proper diagnosis. How does changing the name account for the fact that this is a disorder that can affect multiple body systems, the endocrine system, the metabolic system? How does that lead to better care?

Dr. Melanie Cree:

What we're hoping is that it shouldn't matter what kind of doctor a patient presents to.

So, if they present to an endocrinologist who lives in the polyendocrine metabolic world, they will think about the ovaries. If they present to a gynecologist who normally sits in the ovary world, the gynecologist will think about the metabolic consequences.

And a primary care doctor will hopefully think about it all, and the name will help remind them of all of the pieces of this disorder. The diagnostic criteria have not changed. What we're hoping changes is that whoever is taking care of these women, that they look at their entire body and the entire condition, not just the ovary.

Stephanie Sy:

Right, because PCOS has often been linked to having babies. And advocates have complained, I understand, that that ignores a lot of women who are suffering with symptoms that may not be trying to get pregnant.

How has that focus on women's reproductive capacity affected patients over the years?

Dr. Melanie Cree:

Patients haven't been given accurate information about associated conditions, so type 2 diabetes or extra fat in the liver, high cholesterol, and they have been made to think that any weight gain or difficulties losing weight are their fault.

And they're absolutely not. It is tied to the hormones and the insulin hormone in PMOS that is causing all these problems. And so, in some cases, if women are tested for type 2 diabetes, obstructive sleep apnea, or extra fat in the liver, they could get our weight loss medications for those conditions right now.

They're FDA-approved, and most of them are covered by insurance. So it can change care for millions of women right now.

Stephanie Sy:

There's another thing with PCOS that I think it's worth putting awareness on, which is that women with PCOS are often at greater risk for heart disease, of course, the leading cause of death for women in the U.S.

Can you briefly explain why that is and how this change might actually better address those types of concerns?

Dr. Melanie Cree:

Absolutely.

So what happens with insulin -- and insulin is released to help us store the sugar that we eat, and it also helps store fat. And high insulin levels in somebody with testosterone makes you store fat inside your blood vessels.

One of the research studies that we did over a decade ago showed that 15-year-old girls with PMOS have thicker plaque in their neck arteries than girls who have regular periods. At the age of 15 years, we can measure this.

Stephanie Sy:

I also want to go back to this issue of body fat, because women with PCOS are often told by their providers they simply need to lose weight. That is obviously a fraught thing to say to a lot of American women. And I know plenty of women who have had PCOS with a lean body type.

So can you clarify what can and can't a woman do in lifestyle change, diet and exercise, et cetera? And how should she take that type of advice?

Dr. Melanie Cree:

So the primary point for lifestyle change is to lower the levels of insulin. And insulin, as I said, is released when we eat, in particular, sugary foods.

Insulin works better when we do activity. And so that's where those recommendations come from. And everybody with PMOS, regardless of body size, has insulin resistance. And, again, our research has shown this from the University of Colorado.

And so everybody needs to make those changes. The other things that are part of lifestyle that I think are real difficulties for women are, if you're very stressed out and depressed, your stress hormone cortisol is a little higher. Well, cortisol makes you crave sugary, fatty foods and too tired to exercise.

So if we're really trying to make food and exercise changes, but we're not doing anything to manage our day-to-day stress, we're working against our body. The same with sleep. If we go to bed after midnight, get less than seven hours of sleep, or have obstructive sleep apnea, all of those increase your overnight cortisol.

And so your 24-hour cortisol is just slightly higher, but enough so that you try to make lifestyle changes, and you can't. And I think that's what's really important for people to realize is, it's all aspects of lifestyle, not just food and activity.

Stephanie Sy:

That is Dr. Melanie Cree joining us.

Thank you.

Dr. Melanie Cree:

Bye.