What Is PCOS? And Why is it So Misunderstood?
If you’ve ever felt dismissed, confused, or overwhelmed by your PCOS symptoms — you’re not alone. And no, you’re not imagining things.
This post is here to unpack what PCOS really is — and why so many women are left in the dark when it comes to understanding and managing it.
What is PCOS, Really?
Polycystic Ovary Syndrome (PCOS) is a complex hormonal and metabolic condition that affects at least 1 in 10 women of reproductive age — though the real number may be much higher due to widespread underdiagnosis.
At its core, PCOS is a disorder involving hormone imbalance and insulin resistance. Common symptoms include:
Irregular or missing periods
Excess hair growth (face/body)
Cystic acne
Hair thinning on the scalp
Weight gain or difficulty losing weight
Fertility challenges
Fatigue, anxiety, mood swings
But here’s what people often miss:
PCOS isn’t just a reproductive issue. It can affect your mental health, metabolism, heart, skin, and more. Some people don’t even have ovarian cysts — and many don’t “look” like what society assumes a PCOS patient does.
Reminder:
PCOS is not your fault.
It’s not “just hormones.”
And it can’t be fixed overnight with a pill or a diet.
Why PCOS Is So Misunderstood — And What That Means for Your Care
When I read a 2023 NIH guideline stating that PCOS increases risks for diabetes, cardiovascular disease, sleep apnea, and pregnancy complications, I had to ask:
Why aren’t we treating it more seriously?
PCOS Is Still Seen as “Just a Reproductive Issue”
“Doctors told me to come back when I wanted to get pregnant. As if I didn’t matter until then.”
— PCOS patient testimony, The Guardian (2024)
For decades, PCOS has been treated almost exclusively as a fertility disorder — even though it affects nearly every system in the body. Many healthcare providers still associate it only with irregular periods or difficulty getting pregnant, which means that metabolic, cardiovascular, and mental health symptoms are often overlooked or dismissed entirely.
We’re led to believe that PCOS isn’t a big deal. That unless you're trying to conceive, it’s nothing to worry about.
When I was first diagnosed, I remember feeling silly for complaining about how much it was affecting my daily life. It was brushed off as “just a reproductive issue” — something I was told was simply part of being a woman.
But let me be clear:
If anyone has ever made you feel that way, they were wrong.
Your pain is real.
Your symptoms are valid.
And the research backs you up.
One of the most empowering things I’ve done for myself is learning about PCOS — not just through doctors, but through studies, stories, and other women who’ve walked this path. Still, I know how draining it is to constantly advocate for yourself when you're already overwhelmed.
That’s why I created this space.
To be a guide, an advocate, a companion — someone who shares the information and support I wish I had from the beginning.
You shouldn’t have to fight for recognition.
You shouldn’t have to prove your pain.
PCOS is not just a reproductive issue.
You are seen.
You are heard.
You are valid.
PCOS Is Underfunded and Understudied
Despite affecting 1 in 10 women of reproductive age, PCOS remains one of the most overlooked hormonal disorders in the world.
You’d think a condition this common would be a research priority — but it’s not.
The NIH allocates less than $10 million annually to PCOS research, while conditions like endometriosis and erectile dysfunction — both less prevalent — receive far more funding.
That funding gap leads to:
Delayed diagnoses
Limited treatment options (especially beyond birth control)
Little research on root causes, long-term risks, or quality of life
A shortage of specialists who understand PCOS as more than a fertility issue
And yet, PCOS is linked to type 2 diabetes, heart disease, cancer, anxiety, and depression.
I didn’t know any of this until after my diagnosis — when I had to start researching on my own.
The more I learned, the more I realized this wasn’t just a personal struggle.
It was a reflection of a larger issue in women’s healthcare:
What affects women widely still isn’t taken seriously.
We deserve better.
And change starts with awareness — and advocacy.
Medical Training Is Outdated — and It Shows
I found out the hard way just how widespread this problem really is:
Most healthcare providers don’t receive adequate training in PCOS. It’s barely covered in medical school, and even fewer providers stay up to date with the latest evidence-based research. That means they often miss key symptoms, rely on outdated treatments, or completely overlook the psychological toll this condition takes.
The result?
We’re told to “just lose weight.”
Handed a birth control prescription with no explanation or alternatives.
And sent on our way — still confused, still in pain, still without answers.
“Women, and particularly PCOS patients, endure injustices of medical gaslighting, unnecessary surgeries, inaccurate and harmful medical advice, and ineffective treatments that only compound the mental health burden of the condition itself.”
— Sasha Ottey, Executive Director of PCOS Challenge (The Guardian, 2024)
It’s no surprise, then, that up to 75% of people with PCOS remain undiagnosed, even after seeing a doctor.
Short appointments. Weight stigma. The assumption that only people who are overweight can have PCOS.
In general medicine, if you're not trying to conceive, your menstrual history is often brushed off like it's irrelevant — even though this is a whole-body condition.
Black women, in particular, face an added layer of dismissal due to racial bias and systemic inequities in healthcare.
The lack of training isn’t just a gap — it’s a barrier.
And until PCOS is prioritized in medical education, too many women will continue to be misdiagnosed, mistreated, or ignored altogether.
It’s time for providers to listen, learn, and lead with compassion — because women deserve better.
Mental Health Is Overlooked — But It Matters
Mental health is rarely addressed in PCOS care, even though it's a huge part of the experience. I’ve had days where I felt deeply low, overly sensitive, and emotionally drained without knowing why. PCOS affected my body image, confidence, and sense of self in ways I never expected—hair loss, acne, excess hair, fertility fears—all of it took a toll.
Even when you’re not trying to conceive, hearing “you might struggle to get pregnant” can stir up grief, guilt, and fear about the future. And yet, most care plans focus only on periods or weight—never how you’re feeling.
“I left that appointment feeling like my sadness didn’t matter.”
— Participant in a 2022 study (BMC Women’s Health)
📌 The stats are clear:
4–7x more likely to experience depression/anxiety
3–6x more likely to have an eating disorder
8.5x more likely to attempt suicide¹
These risks aren’t just tied to weight—they stem from hormone imbalances, insulin resistance, inflammation, and gut-brain changes²³⁴.
💛 If your mental health isn’t being talked about, it’s not you—it’s a gap in the system. Keep advocating. You deserve support for all of what you’re going through.
There’s No Unified Approach to Care
One of the hardest things about living with PCOS is the inconsistency in care. You can see five doctors and get five completely different answers — or none at all.
There’s no standard treatment plan for PCOS.
No clear protocol.
No unified approach.
What you’re told often depends on the provider — how much they know, and whether they take you seriously.
Some treat it only as a fertility issue. Others focus solely on weight. Many prescribe birth control or metformin without ever discussing root causes or lifestyle factors like sleep, stress, or insulin resistance.
When I was diagnosed, I expected guidance. Instead, I got a quick explanation, a prescription, and was told to “come back when I want to get pregnant.”
No talk of nutrition. No discussion of mental health. No plan.
This lack of coordination is more than frustrating — it’s harmful:
Misdiagnosis or delayed diagnosis is common
Symptoms are treated, not the root cause
Mental health and quality of life are rarely addressed
Patients are left to advocate for themselves without support
PCOS doesn’t look the same for everyone. That’s why care needs to be personalized and holistic — not rushed or generalized.
You deserve more than a one-size-fits-all plan.
You deserve care that sees all of you.
So What Can You Do?
For Yourself:
Track your symptoms (use an app or journal)
Speak up in appointments (I know easier said than done)
Find community (Facebook groups, Reddit, forums)
Support your mental health (therapy, support groups, journaling)
Learn about root-cause healing (nutrition, stress, sleep, movement)
For the Bigger Picture:
Share your story to raise awareness
Support organizations like PCOS Challenge
Vote with healthcare in mind — advocate for women’s research funding
Challenge stigma when you hear outdated info
✨ Final Thoughts
PCOS isn’t “just a hormone thing.” It touches every part of your life — from your body to your emotions to your identity.
You deserve real answers, real support, and real options.
You deserve to feel seen, heard, and empowered.
💌 With compassion and truth,
Gina
References & Resources
Sasha Ottey, PCOS Challenge, quoted in The Guardian (2024). Link
NIH PCOS Clinical Practice Guidelines (2023), Monash University. Link
Cesta, C.E., et al. (2023). Polycystic Ovary Syndrome and Risk of Suicide Attempts, JAMA Psychiatry. Link
Cooney, L.G., & Dokras, A. (2017). Beyond Fertility: PCOS and Mental Health, Human Reproduction. Link
Teede, H.J., et al. (2018). International Evidence-Based Guidelines for the Assessment and Management of PCOS. Link
Williams, S., Sheffield, D., & Knibb, R. (2016). “Everything’s from the inside out with PCOS”, Women's Reproductive Health. Link