PCOS Was Never Really About Ovarian Cysts— It Only Took Medicine 15 Years to Admit It.

Good news for women's health! (For once.) #TransparentTuesday

Hi friend,

I came across a piece of genuinely good news in women's health recently, and given the state of, well… everything… I feel like we should take our wins where we can get them!

What happened is that—after more than a decade of debate, consultation, research, and ferocious advocacy—the condition formerly known as PCOS (Polycystic Ovary Syndrome) has officially been renamed PMOS: Polyendocrine Metabolic Ovarian Syndrome. 

The change was formally announced in May and published in The Lancet after a long global consensus process involving researchers, clinicians, patient advocates, and professional organizations from around the world. 

Now, changing the name of a medical syndrome might not sound like a particularly big deal, and I get that. 

If you’re not already deep in the lore of how medical sexism, racism, and anti-fatness have been negatively (and catastrophically) impacting women’s health, then this could easily sound like one of those things that only academics care about. More of a bureaucratic update or terminology tweak than a change that will impact real people.

But as someone who has worked with many women suffering from PCOS over the years, let me tell you that this news is actually a really big deal, and that it will ensure that way less people get incorrectly diagnosed or treated for this condition moving forward. 

This is absolutely and unambiguously good news, but… if I’m being honest, I find my own reaction to it more complex than that.

I feel relieved, of course, knowing that this change will help prevent so many people from experiencing the unnecessary suffering that I’ve witnessed so many of my clients go through as they try to get diagnosed and treated. 

But I also feel absolutely furious.

Because here's the thing: medical experts have known for years that the name "Polycystic Ovary Syndrome" was inaccurate, misleading, and actively contributing to harming people. 

The NIH actually even recommended changing the name way back in 2012! But despite everyone being aware that the name was wrong and harmful, it still took the broader medical community another fourteen years to fix it. 

And during that time so many people suffered: terribly and unnecessarily. 

The problem with the original name is that it suggested the condition was primarily about the presence of ovarian cysts. And… it absolutely isn't. 

Many people diagnosed with PCOS don't actually even have ovarian cysts at all, and the "cysts" referred to in the name aren't really ovarian cysts in the way most people think of them, either. 

So the name was incredibly misleading, and caused many people suffering from PCOS—but without the presence of these nominal cysts—to get misdiagnosed over the years, or to not get diagnosed at all!

Meanwhile, many of the most significant symptoms and aspects of this syndrome actually have very little to do with the ovaries, and have everything to do with hormones, metabolism, insulin resistance, cardiovascular risk, inflammation, mental health, painful periods, and long-term disease risk.

Due to the condition’s previous name, it was always considered a reproductive issue, rather than what it actually is: a metabolic issue.

That meant that healthcare providers were not only looking in the wrong place to confirm a diagnosis, but they were also regularly blaming people’s symptoms on their weight and prescribing weight loss, which is bonkers when you consider that one of the most telling symptoms for this condition is weight gain and inability to lose weight!

Plus, even once someone finally got diagnosed, they were very likely to not be directed toward the appropriate and effective treatments, because healthcare providers typically (and wrongly) thought about it as an issue for OB/GYNs, rather than for endocrinologists!

In other words, the old name was directly causing harm to people, causing them to be questioned, dismissed, misbelieved, misdirected, blamed, shamed, and neglected—all interruptions and obstacles to appropriate diagnosis and treatment that prolonged the suffering of millions. 

Women whose ultrasounds didn't show the expected ovarian features were sometimes told they couldn't possibly have PCOS. Others spent years bouncing between specialists because their metabolic symptoms, weight changes, fatigue, insulin resistance, or cardiovascular risk weren't being recognized as part of the same condition. Some were only offered fertility-related treatment because the syndrome was viewed primarily as a reproductive issue rather than a whole-body health condition.

So yes, changing the name is a really big deal, because it reflects something a hell of a lot closer to reality:

• The word "Polyendocrine" acknowledges that multiple hormone systems are involved.

• The word "Metabolic" highlights the fact that insulin resistance and metabolic dysfunction are often central features.

• And the word "Ovarian" remains there because ovarian function is still a part of the picture… but only a part. 

• Also, fun fact: the word "syndrome" is there to acknowledge that we're talking about a complex collection of symptoms and health effects, rather than a single or simple disease process with a known cause. 

In other words, the new name finally reflects what women have been saying, and researchers have been knowing, for a very long time.

And while I’m so glad they’ve finally made this change, I can’t help but asking: If everyone already knew the old name was misleading and harmful, then why did it take fourteen years to change it?

If you happen to be a woman, I suspect you already know the answer to this question.

It’s because thanks to systemic sexism, women's health has a long, ugly history of not being treated as important, as a priority, or frankly even as real. 

Take endometriosis as another example.

Endometriosis is a condition that affects roughly one in ten women and can cause debilitating pain, infertility, organ damage, gastrointestinal symptoms, and profound impacts on quality of life. 

But many patients still report spending years—sometimes close to a decade—seeking a diagnosis, while being told by various medical professions that their symptoms are fake, normal, exaggerated, anxiety-related, psycho-somatic (ie: not real), or simply part of being a woman. 

UGH.

Consider how frequently women reporting pain are taken less seriously than men with identical symptoms. Or the fact that women were historically excluded from many clinical trials because hormonal fluctuations were considered "too complicated" for researchers. Or the countless stories of women whose autoimmune disorders, cardiac symptoms, chronic pain conditions, ADHD, autism, and other health concerns went unrecognized because the research and diagnostic criteria were developed primarily around male presentations.

Again and again, we see the same pattern of sex discrimination in research and healthcare:

• When women’s bodies are more complicated to study, they often get studied less.

• When women's symptoms don't fit existing assumptions, they're dismissed more quickly.

• When women report pain, they're more likely to be told it’s all in their head, the result of anxiety, or that they’re just making it up to “get attention.”

And when a condition primarily affects women, it often receives less funding, less attention, and less urgency than it deserves. (Learn more about this issue here!)

Anyway, what we’re talking about here is a historical and ongoing medical bias against women, and it’s a big part of why this PMOS change feels more significant than just a name change to me.

It's an acknowledgment. 

• Acknowledgment that women are telling the truth, and that they deserve effective care and treatment. 

• Acknowledgement that language matters, and that how we frame a condition influences how we research it, diagnose it, treat it, fund it, and understand it.

• Acknowledgment that the system is broken and causing harm, and that we need to do better. 

So if you find yourself feeling frustrated that it took this long, and you feel a bit overwhelmed by the (very) long path ahead of us needed to offset the past hundreds of years of medical sexism… I’m right there with you. 

If medical experts knew in 2012 that the name was inaccurate and contributing to misunderstanding, it's hard not to wonder how many delayed diagnoses, inadequate treatments, and unnecessary years of confusion happened in the meantime.

But at the same time I think this story feels like a tiny offering of something that has been in very short supply lately: hope. 

This change shows us that progress is possible. 

Even with our current administration. Even with the cuts in funding. Even with the rollbacks of women’s rights and regressive politics. 

Despite everything, the medical community agreed that a change was needed to protect women, and they freakin’ made that change. And to me, that’s worth celebrating.

Because despite all the legitimate criticisms we can make about medicine, research funding, healthcare systems, and the current political landscape, this change happened because patients kept speaking up, researchers kept gathering evidence, advocates kept pushing, and organizations kept listening.

That matters.

Our voices and efforts matter.

And change is possible.

Women's health still has a very long way to go. 

There are still tons of conditions that remain poorly understood, underfunded, underdiagnosed, and routinely dismissed. There are still enormous gaps in research. There are still ways that sexism shows up in healthcare every single day.

But every once in a while, we get a reminder that progress isn't only measured in giant leaps. Sometimes it's measured in finally calling something by the name that everyone already knew it should have been called. 

But in a year where good news has felt increasingly hard to come by… honestly, I'll take it.

Big hug,

Jessi