Diagnosing PCOS

Everything you need to know: Why diagnosis is complex, inconsistent, and often missed

Polycystic ovarian syndrome is more than just “cysts on the ovaries.” It is a complex condition that can affect your hormones, metabolism, skin, heart, and mental health.

Yet despite how common it is, many women go undiagnosed and unsupported. With multiple sets of criteria developed over the years and gaps in clinician knowledge, patients often face delays, misdiagnoses, and confusion.

Knowing the current diagnostic standards can make a huge difference in advocating for your own diagnosis and care.

PCOS As a Syndrome

Before we define the diagnosis, you need to understand what a diagnosis of PCOS means. It is not considered a disease, but instead classified as a syndrome.

A syndrome is a collection of signs and symptoms that occur together, but the exact cause may be unknown or variable. It describes a pattern rather than a single, well-defined disease, of which PCOS is a classic example.

The 2023 International PCOS Guidelines explicitly state that PCOS is a diagnosis of exclusion, meaning doctors must first rule out other conditions that can cause similar symptoms, including:

• Thyroid disorders (too high or too low)

• Hyperprolactinemia (high prolactin levels)

• Non-classic congenital adrenal hyperplasia (CAH)

• Cushing’s syndrome

• Androgen-secreting tumors

This ensures that irregular periods, excess male hormones, or polycystic ovaries are truly due to PCOS, and not another underlying condition. This matters so the right interventions can be applied.

Diagnostic Criteria

Three different sets of criteria have been proposed and used since the 1990’s:

• The NIH Criteria

• The Rotterdam Criteria

• The Androgen Excess Society (AES) Criteria

We’ll take a quick overview of how the criteria have evolved and what is used in practice today.

The NIH Criteria

In 1990, the National Institutes of Health (NIH), reached agreement on the first official guidelines and qualified PCOS diagnosis as the presence of:

• Hyperandrogenism (elevated male hormones) or clinical signs of it (hirsutism)

• Irregular menstrual cycles/ovulation

The finding of polycystic ovaries on ultrasound was considered “suggestive of PCOS”, but not diagnostic.

At the time, this was a contrast to the prevailing thought in the UK and Europe, where polycystic ovaries were considered a “defining feature of PCOS.”

The Rotterdam Criteria

In 2003, a group of PCOS experts met for a conference in the Netherlands and created what is well-known as the Rotterdam criteria.

The criteria require at least 2 of these 3 things to be present:

• Irregular menstrual cycles/ovulation

• Polycystic ovaries on ultrasound

• Hyperandrogenism (elevated male hormones) or clinical signs of it (hirsutism)

The Phenotypes

Based on the Rotterdam, there can be 4 different subtypes, or phenotypes, based on which criteria are present:

• Phenotype A- all three; irregular cycles, polycystic ovaries and hyperandrogenism

• Phenotype B- hyperandrogenism and irregular cycles

• Phenotype C- polycystic ovaries and hyperandrogenism

• Phenotype D- irregular cycles and polycystic ovaries

The key differences in the Rotterdam from the NIH criteria were:

• Hyperandrogenism is not required for diagnosis (Phenotype D)

• Polycystic ovaries are now an official part of the criteria

As a result, these expanded criteria led to increased diagnosis– up to three times reported in some studies.

The AES Criteria

In 2006, the Androgen Excess Society (AES) introduced their own criteria with one stark contrast to the Rotterdam– elevated androgens were a required feature for diagnosis.

The AES criteria defined:

• hyperandrogenism or clinical signs of it (hirsutism)

And at least one of the following:

• Polycystic ovaries on ultrasound

• Irregular menstrual cycles/ovulation

This criteria eliminates the Rotterdam phenotype D— those with only polycystic ovaries and irregular ovulation/menstrual cycles, but no hyperandrogenism.

What Is Currently Used

The existence and use of multiple criteria has been criticized for creating confusion within the medical community and delaying much needed research. Well, duh.

In 2012, the NIH held another meeting of PCOS experts and concluded that the Rotterdam criteria should be used. This sentiment was echoed again in the 2018 International Evidence-Based Guideline for the Assessment and Management of PCOS.

As it stands today, the Rotterdam criteria is what is widely recognized, accepted and used and with what you should be familiar.

A recent change to know

In 2023, an update was made to the International Evidence-Based Guideline for the Assessment and Management of PCOS.

The updated guidelines now allow for anti-Mullerian hormone (AMH), a blood test, to be used in place of ultrasound for assessing polycystic ovaries in adults for the diagnosis of PCOS.

To learn more about AMH, see point number four in 7 Key Hormone Imbalances in PCOS.

Diagnosing in Adolescence

Diagnosing PCOS in adolescents requires caution and care because normal changes in puberty, like irregular periods and mild acne or hirsutism, can mimic PCOS features.

According to the 2023 International Evidence-Based Guidelines, a diagnosis should only be made when both of the following are present:

• Irregular menstrual cycles (adjusted for years post-menarche)

• Clinical or biochemical hyperandrogenism

Polycystic ovaries can a normal finding in puberty, while the menstrual rhythm is establishing, so ultrasound or AMH levels should not be used for diagnosis in this age group.

The expert guidance recommends adolescents presenting with only one feature should be labeled “at risk” and followed up to 8 years post menarche (the first cycle/period) to avoid over diagnosis while guiding early management of metabolic and psychosocial risks.

Gaps in PCOS Diagnostic Knowledge Among Clinicians

Unfortunately, having clear criteria is not the only issue. Many clinicians are still unaware of or unclear on the recommended criteria, and some continue to associate polycystic ovaries as the primary feature of the syndrome.

A few studies and papers have looked at this with startling results:

• A 2017 survey of 630 North American clinicians found that 27.7% did not know which criteria they used. Over one‑third of clinicians incorrectly associated PCOS primarily with “cysts on ovaries,” and many general Ob/Gyn were less aware of associated psychological conditions (depression/anxiety). Reproductive endocrinology specialists performed much better, highlighting a clear knowledge gap between generalists and experts.

• In 2024, another study in Germany revealed similar gaps. Out of 206 survey taken, 97.9% of specialists correctly identifying the criteria compared to just 51% of non-specialist gynecologists. That means, if you walked into a standard gynecologist office in Germany, you’d have a 50/50 chance of the clinician knowing how to diagnose you.

• In 2018, a US survey study of 347 ob/gyns in-training revealed, only 55% could correctly identify the core PCOS diagnostic criteria, and fewer than 10% recognized all five detailed components— highlighting major gaps in foundational training.

I”m sure it will come as no surprise to many of you that primary care has similar shortcomings.

• A 2022 study of 75 primary care physicians and their PCOS patients found that primary care is often the first stop but rarely where PCOS is diagnosed—53% sought help there first, yet only 22% were diagnosed, 24% treated, and nearly one in four misdiagnosed.

• A 2017 global survey of 1,385 women found that one-third waited over two years and saw three or more clinicians for a PCOS diagnosis, with only 35% satisfied and just 16% happy with the information provided.

What this means for you

If you suspect you have PCOS, there is a chance you may end up in the care of (or have already been in the care of) someone that does not clearly understand how to identify and correctly diagnose PCOS, as well as screen properly for the other conditions associated with it.

This has been the frustrating lived experience for many of my clients and I’m sure for many of you reading.

This means, you need to be very familiar with the diagnostic criteria, so you can appropriately advocate for yourself while navigating the medical system.

Now What?

If you suspect you have PCOS and are seeking help from your doctor, here’s my advice on navigating the diagnostic process and beyond.

Memorize the Rotterdam criteria

Knowledge is empowerment in the medical system. Before your appointment, make sure you are CRYSTAL clear on the diagnostic criteria and how they are measured. Restating here for clarity:

Diagnosis is made by having at least 2 of these 3:

• Irregular menstrual cycles/ovulation

• Polycystic ovaries on ultrasound or elevated AMH on lab work

• Hyperandrogenism (elevated male hormones) or clinical signs of it (hirsutism)

Ask questions

Be vocal. These questions will quickly weed out a practitioner that is not informed on PCOS:

• What criteria are you using for diagnosis?

• What conditions will you be seeking to rule out first?

• What are your goals for my care?

• What are the related conditions and health issues I need to be aware of and monitor if I am diagnosed with PCOS?

Assess for polycystic ovaries

If not ordered, request ultrasound or AMH (blood test) to assess for polycystic ovaries. Seems outrageous I even have to state this here, but I’ve had clients who were never assessed.

Request labs

Having the diagnosis is the first step. Next, we want to know what is driving your PCOS symptoms.

I recommend casting a wide net with labs to assess for androgens, markers of insulin resistance, inflammation and nutrient deficiencies as well as related conditions. I’ve got you fully covered in this post below.

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If you don’t get the answers you need, find a new doctor.

Seriously. I know this is not fun, but having a knowledgeable (and compassionate) practitioner is a game changer. You might have to kiss a few frogs, but when you find the right practitioner, it changes everything.

Work with a registered dietitian that specializes in PCOS

Even when patients finally find a clinician who understands PCOS and assigns the correct diagnosis, this is often where care falls apart.

Many of my clients describe the same moment of relief, followed immediately by frustration, when they are then handed a familiar script:

• “Lose weight.”

• “Eat less and move more.”

• “Take birth control and come back when you want to get pregnant.”

• “Start metformin and cut carbs.”

This is where the healthcare system is failing so many of you.

PCOS care requires education, appropriate screening, targeted testing, and individualized follow-up—not generic advice.

“Eat less and move more” is not legitimate medical advice for PCOS and helps no one.

What is helpful, and supported by evidence, is learning and implementing strategic nutrition and lifestyle changes that address your underlying drivers of the syndrome.

What’s even more helpful, is having a kind and compassionate coach that reasonably stretches you, but helps you do it at your pace.

This is the work I do with clients in my private practice. If you’re interested in working with me one-on-one, you can learn more at PCOS Pro. I offer a free, 15-minute, no-pressure call (we are not selling cars here) to see if it’s the right fit.

And because I know individualized care is not accessible to everyone, I am also creating a nutrition/lifestyle-focused digital course on PCOS, planned for launch this spring.

I hope this article gave you some much needed clarity. Let me know if you have any questions in the comments.

I am so looking forward to growing this community here in 2026 and helping you reach your PCOS goals.

Sources

• Christ JP, Cedars MI. Current Guidelines for Diagnosing PCOS. Diagnostics (Basel). 2023;13(6):1113. PMID: 36980421; PMCID: PMC10047373. https://pubmed.ncbi.nlm.nih.gov/36980421/ PMC

• Gaps in knowledge regarding the diagnostic criteria and management of PCOS in Germany: an anonymous web-based survey. PMCID: PMC11617859. https://pmc.ncbi.nlm.nih.gov/articles/PMC11617859/ PMC

• The Androgen Excess and PCOS Society criteria for the polycystic ovary syndrome: the complete task force report. J Clin Endocrinol Metab. 2009; PubMed PMID: 18950759. https://pubmed.ncbi.nlm.nih.gov/18950759/ PubMed

• Dokras A, et al. Gaps in knowledge among physicians regarding diagnostic criteria and management of polycystic ovary syndrome. Fertil Steril. 2017; PubMed PMID: 28483503. https://pubmed.ncbi.nlm.nih.gov/28483503/ PubMed

• Knowledge of PCOS in physicians-in-training: identifying gaps and educational opportunities. J Grad Med Educ. 2018; PubMed PMID: 32252571. https://pubmed.ncbi.nlm.nih.gov/32252571/ PubMed

• Gibson-Helm M, Teede H, Dunaif A, Dokras A. Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome. J Clin Endocrinol Metab. 2017; PubMed PMID: 27906550. https://pubmed.ncbi.nlm.nih.gov/27906550/ PubMed

• Diagnostic journey of patients with PCOS and obesity and primary care physicians (2022 study). PubMed PMID: 27906550 covers related diagnostic delay experiences; source details above.PubMed