PCOS Explained

What is PCOS?

Carmina, E. (2022). Need to Introduce the Finding of Obesity or Normal Body Weight in the Current Diagnostic Criteria and in the Classification of PCOS. Diagnostics, 12, 2555. https://doi.org/10.3390/diagnostics12102555

Barber, T.M., Dimitriadis, G.K., Andreou, A., Franks, S. (2016). Polycystic ovary syndrome: insight into pathogenesis and a common association with insulin resistance. Clinical Medicine (London), 16(3), 262-266. https://doi.org/10.7861/clinmedicine.16-3-262.

Women usually figure out they suffer from PCOS because either they can’t get pregnant, or they have irregular menstrual cycles (prompting their doctors to take an ultrasound of their ovaries who uncover polycystic ovaries). PCOS, however, is not limited to these symptoms.

Let’s talk about what PCOS, in fact, is. It’s likely a genetic disorder, likely because there appears to be a hereditary component to it, but no specific genetic link has been found. What we do know is that PCOS expresses as a combination of metabolic dysfunction, androgenic dysfunction, and reproductive dysfunction.

In 2003, the Rotterdam criteria were agreed upon by some in the international PCOS research community to give us a generally accepted definition for PCOS. Though the Rotterdam criteria are the most widely used to define and identify PCOS cases, they are still criticized for failing to incorporate into the diagnostic protocol two important metabolic drivers of PCOS: (1) insulin resistance / hyperinsulinemia; and (2) abdominal obesity (quick caveat here: absence of abdominal fat does not rule out PCOS).

Despite their shortcomings, we still need a place to start with a definition so let’s look to the Rotterdam criteria which are as follows:
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• Polycystic ovaries (e.g., multiple immature follicles, enlarged ovaries);
• Hyperandrogenism / androgenic dysfunction (e.g., hirsutism, elevated LH/FSH); and
• Reproductive dysfunction (e.g., infertility, chronic oligo-amenorrhea).

Let’s briefly explain what each of these things means.

Polycystic Ovaries

Rosenfield, R. (2015). The Polycystic Ovary Morphology-Polycystic Ovary Syndrome Spectrum. Journal of Pediatric and Adolescent Gynecology, 28(6), 412-219. https://doi.org/10.1016/j.jpag.2014.07.016.

Dewailly, D., Lujan, M., Carmina, E., Cedars, M., Laven, J., Norman, R., et. al. (2014). Definition and significance of polycystic ovarian morphology: a task force report from the Androgen Excess Society and Polycystic Ovary Syndrome Society. Human Reproduction Update, 20(3), 334-352. https://doi.org/10.1093/humupd/dmt061.

Polycystic ovaries are ovaries with an accumulation of multiple immature follicles that resemble cysts and that are sometimes referred to as cysts, hence the name “poly- (multi-) cystic (cyst-like) ovary syndrome” (PCOS). The follicles are fluid-filled sacs that house your eggs. They start as primordial follicles (less than 2mm in diameter) and grow into immature follicles (2mm-9mm in diameter). Thereafter, one dominant follicle will develop to maturity (grow larger than 9mm) and will ovulate (release an egg) during your menstrual cycle. In PCOS sufferers, no mature follicle develops or ovulates. This results in anovulatory infertility.

A PCOS patient aged 18-35 is deemed to have polycystic ovaries when there is a presence of 12 or more immature follicles in at least one ovary. In women ages 20-39, ovarian volume greater than 10cc is sometimes used as a surrogate marker for polycystic ovaries when the image quality is too low to allow for a reliable counting of immature follicles.

The inclusion of polycystic ovaries in the Rotterdam criteria is somewhat controversial because polycystic ovaries are not uncommon in reproductive-age women who exhibit little to no symptoms of PCOS. Also, their clinical significance in and of themselves is undefined absent some other finding like androgenic dysfunction. We mention this fact because many PCOS sufferers have been told by their doctors that they don’t have PCOS based on nothing more than an ultrasound that fails to show polycystic ovaries, the non-presence of which has little, if any, diagnostic significance.

Androgenic Dysfunction

Moghetti, P., Tosi, F. (2020). Insulin resistance and PCOS: chicken or egg? Journal of Endocrinological Investigation, 44, 233-244. https://doi.org/10.1007/s40618-020-01351-0.

Tosi, F., Fiers, T., Kaufman, J., Dall’Alda, M., Moretta, R., Giagulli, V., et. al. (2016). Implications of Androgen Assay Accuracy in the Phenotyping of Women with Polycystic Ovary Syndrome. The Journal of Clinical Endocrinology & Metabolism, 101(2), 610-618. https://doi.org/10.1210/jc.2015-2807.

Rosenfield, R. (2015). The Polycystic Ovary Morphology-Polycystic Ovary Syndrome Spectrum. Journal of Pediatric and Adolescent Gynecology, 28(6), 412-219. https://doi.org/10.1016/j.jpag.2014.07.016.

Androgenic dysfunction is one of the tell-tale features of PCOS. Scientists describe it in both clinical terms (i.e., by its symptoms) and in biochemical terms (i.e., by lab results showing excess levels of relevant hormones in the blood). In other words, you can have the symptoms which would render the lab results somewhat irrelevant, or you can have no symptoms but still suffer from hyperandrogenism based on what’s happening in your blood.

The most prevalent clinical symptom is hirsutism which refers to male-pattern hair growth (long, black “terminal” hairs) usually around the upper lip, chin, jawline, chest/stomach, and/or back. Other symptoms include adult acne and androgenic alopecia (thinning or loss of hair on the scalp).

Meanwhile, biochemical androgenic dysfunction is further broken down into 2 categories: ovarian and adrenal. Ovarian androgenic dysfunction involves an excess of testosterone. Adrenal androgenic dysfunction involves an excess of dehydroepiandrosterone sulfate (DHEAs).

Assessment of both clinical and biochemical androgenic dysfunction can often be inaccurate. Hirsutism, for example, is highly variable among different ethnic groups and assessment depends largely on the preconceived notions of the individual observer. Serum (blood) hormone levels, depending on what’s measured and how, can fail to make valid assessments where most routine laboratories have poor sensitivity and accuracy, where upper normal limits (UNLs) are not universally agreed upon in the scientific community, and where there’s similarly little agreement on exactly which hormones to measure. Many PCOS sufferers have been denied treatment based on flawed lab data and/or arbitrary cut-off values.

Reproductive Dysfunction

Dietz de Loos, A., Jiskoot, G., Louwers, Y., Beerthuizen, A., Busschbach, J., Laven, J. (2023). Pregnancy Outcomes in Women with PCOS: Follow-Up Study of a Randomized Controlled Three-Component Lifestyle Intervention. Journal of Clinical Medicine, 12, 426. https://doi.org/10.3390/jcm12020426.

Reproductive dysfunction means you either can’t get pregnant or if you do the chances of miscarriage are relatively high. Clinical symptoms of reproductive dysfunction typically include:

• amenorrhea (you’ve stopped having periods for 3+ months in a row);
• oligomenorrhea (your periods are spaced more than 35 days apart); and
• polymenorrhea (your periods are spaced less than 21 days apart).

These irregular cycles will sometimes alternate with intervals of regular cycles (i.e., periods every 28 days +/- 2 days), which is to say that the occasional presence of regular cycles isn’t an indication of the absence of reproductive dysfunction.

There are in fact some PCOS sufferers who have consistent regular cycles but who still don’t ovulate. Then there are others who do ovulate and can get pregnant but are at higher risk for pregnancy complications like gestational diabetes, preeclampsia, and preterm delivery. In this last group, it can be difficult to determine whether PCOS or another factor like obesity is the culprit.

Technical Diagnosis vs. Useful Diagnosis

Zhao, H., Zhang, J., Cheng, X., Nie, X., He, B. (2023) Insulin resistance in polycystic ovary syndrome across various tissues: an updated review of pathogenesis, evaluation, and treatment. Journal of Ovarian Research, 16(1), 9. https://doi.org/10.1186/s13048-022-01091-0.

To polish off the definition, PCOS sufferers are generally diagnosed as having PCOS when they present with 2 out of the 3 Rotterdam criteria. That requirement may be useful to a certain extent for research purposes when studying a large group, but it’s not overly helpful to the individual patient who presents with symptoms in any one area where those symptoms are negatively impacting their quality of life. And again, let’s remember the Rotterdam criteria fall short in failing to consider metabolic dysfunction from which we know 65%-95% of PCOS sufferers are afflicted.

Accordingly, our philosophy is to identify the patient’s symptoms at the specific level of dysfunction (metabolic, androgenic, reproductive) and help women understand how those symptoms relate to those dysfunctions.

Metabolic Dysfunction

Asad, M, Nandy, M, Banerjee, M, Mukherjee, M. (2022) Effect of Oral Contraceptive Pill and Metformin on Metabolic and Endocrine Parameters in Polycystic Ovarian Syndrome: A Prospective Interventional Study. Journal of Clinical & Diagnostic Research, 16(9). https://doi.org/10.7860/JCDR/2022/56913.16915.

Purwar, A., Nagpure, S. (2022) Insulin Resistance in Polycystic Ovarian Syndrome. Cureus, 14(10). https://doi.org/10.7759/cureus.30351.

Finally, let’s quickly talk about metabolic dysfunction since it’s one of the critical components of the condition. What do we mean by metabolic dysfunction? When you hear metabolic, think metabolism. Metabolism refers collectively to the series of reactions wherein we take in nutrients and our bodies break them down for energy. Dysfunction in any one of those series of reactions, a metabolic pathway, would be metabolic dysfunction. The primary types of metabolic dysfunction we are concerned with in PCOS are: 1. insulin resistance; 2. hyperinsulinemia; and 3. abdominal fat/obesity.

Now would be a good time, if you haven’t already, to investigate your symptoms with our symptoms checker tool. With it, we provide information about PCOS tailored specifically to you and your symptoms.

Let’s check your symptoms

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Why are your symptoms more reliable than your lab results?

Christ, J., Cedars, M. (2023) Current Guidelines for Diagnosing PCOS. Diagnostics, 12(6), 1113. https://doi.org/10.3390/diagnostics13061113.

Moghetti, P., Tosi, F. (2020) Insulin resistance and PCOS: chicken or egg? Journal of Endocrinological Investigation, 44, 233-244. https://doi.org/10.1007/s40618-020-01351-0.

If you read the current medical literature on PCOS, you’ll always see it described as a “heterogenous” disorder, meaning its components are many, diverse, and can be combined in endless arrays that make diagnosing it difficult and confusing. Possibly as high as 75% of PCOS cases go undiagnosed, and that’s largely in part due to doctors who mistakenly rely on lab results for diagnosis.

Your symptoms are where you must start with diagnosing and treating the condition, because it’s your symptoms after all that are impacting your quality of life. If you walk out of the doctor’s office with symptoms while being told you may or may not technically have PCOS, but that either way you’ll probably be fine (“just eat right and exercise,” your doctor says), you’re getting no relief from your real problem, your symptoms.

Your symptoms are also of paramount importance given that blood work can be unreliable. Blood work (i.e., the biochemical evidence) can be plagued by many shortcomings, for example:
• methods generally available in routine clinical laboratories can be both inaccurate and imprecise as compared with measures obtained by gold standard methods;
• measurement thresholds derived from medical studies may have been useful for evaluation of a large population for research purposes but are not particularly helpful in diagnosing an individual;
• surrogate indexes commonly used to approximate certain results can be predictive that a dysfunction exists, but their predictive relevance stops there and they are often misused to rule out the dysfunction; and
• scientists still don’t fully understand and agree on which criteria are the most important in assessing the presence of certain dysfunctions, e.g., total testosterone vs. free testosterone vs. 11-ketotestosterone in trying to diagnose hyperandrogenism.

If you’ve ever visited your primary medical doctor, OB/GYN, or endocrinologist to be diagnosed for PCOS, it’s more likely than not that you were told that some or all your symptoms were “normal” because your lab results, which were based on inherently weak and/or flawed lab data, were within normal limits. We’re here to tell you that you’re not a lab number. You’re a human being with symptoms and those symptoms matter.

For these reasons, we highly encourage you to investigate your symptoms with our symptoms checker tool. With it, we provide information about PCOS tailored specifically to you and your symptoms.

PCOS Explained (Polycystic Ovary Syndrome)