I get a spark in my eyes everytime I talk about PCOS or work with individuals living with it. Talking about PCOS symptoms and diagnosis may help you learn more about PCOS as a starting point.
PCOS is one the most common hormonal conditions in women. Many people may experience different symptoms within PCOS, which adds to the challenge of diagnosing it. In addition, many are undiagnosed or misdiagnosed. PCOS is also an under-treated and under-researched condition.
PCOS affects women across the lifespan, not just the reproductive age. You’ll see that a lot of time that PCOS is only defined as affecting women in their reproductive age or premenopause. It looks clearer in the reproductive life stage due to the menstrual cycle, but it affects women beyond the reproductive age.
Do you want to learn more? Let’s dive deeper!
What is PCOS?
PCOS is a short way to say Poly-Cystic Ovary (or Ovarian) Syndrome.
Let’s first define the word syndrome. According to Merriam-Webster Dictionary, A syndrome is “a group of signs and symptoms that occur together and characterize a particular abnormality or condition” (Merriam-Webster, n.d.).
So PCOS is a group of symptoms that result from an imbalance of hormones. It’s characterized by an increase of male hormones (androgens), irregular periods, and ovarian dysfunction, which creates an endocrine, metabolic, and reproductive condition (Escobar-Morreale, 2018).
Not the Same As Ovarian Cysts
PCOS is a syndrome, which is different from the condition: ovarian cysts. The two conditions may still occur together. Ovarian cysts can be common among women. “Worldwide, about 7% of women have an ovarian cyst at some point in their lives”. (Farghaly, 2014). Cysts on the ovaries are sacs that are filled with fluid. Most of the time, they are harmless and painless and resolve on their own.
In PCOS, what are referred to as “poly-cystic ovaries” are immature follicles that appear in the ovaries as a string of pearls and a count of 20 or more in one or both ovaries and they’re unnecessary to receive the diagnosis. See diagnostic criteria below.
That’s why PCOS can be a misleading name. More discussion below!
PCOS: A Misleading Name
Many women ask me: “But I don’t have cysts on my ovaries, how do I have PCOS?” According to the above diagnostic criteria, it is not necessary to have cysts on the ovaries to be diagnosed with PCOS if other criteria were met. Therefore, PCOS is a misleading name.
The syndrome was initially named after who discovered the cystic ovaries: Stein and Laventhal, then the name has changed to pcod then to pcos.
A panel from NIH gathered in 2012 and they noted: “We believe the name ‘PCOS’ is a distraction and an impediment to progress. It causes confusion and is a barrier to effective education of clinicians and communication with the public and research funders.” (Azziz, 2014)
The panel further stated, “It is time to expeditiously assign a name that reflects the complex… interactions that characterize the syndrome—and their reproductive implications.” This investigator strongly agrees with this recommendation..
According to Azziz (2014), “For a medical disorder we can propose at least four compelling reasons to change its name:
- The name is misleading or confusing.
- The name has negative associations.
- The name results in low brand equity.
- The name is regional or localistic.
And these all apply to the name PCOS. Polycystic ovary syndrome implies that polycystic ovaries are the sine qua non of the disorder, which is simply not true.” (Azziz, 2014).
Causes of PCOS
When you look for the causes of PCOS, you find that we still don’t know exactly what causes PCOS. However, it’s believed that it has a genetic and environmental component. It is important to note that the individual living with PCOS didn’t cause PCOS to themselves and they are not to blame!
PCOS runs in families. There is a complex genetic interplay when it comes to hormonal imbalance and inflammation in PCOS. It’s also known that it starts in the womb.
Research has shown that parents with chronic conditions are more likely to have daughters with PCOS (Davies, Marino, Willson, March, & Moore, 2011; Leibel,, Baumann, Kocherginsky, & Rosenfield, 2006).
Besides genetics, which is the major cause. Environmental factors play a role in the development of PCOS. It is found that when the mother is exposed to high levels of androgens during pregnancy can affect the daughter’s androgen level (Kshetrimayum, Sharma, Mishra, & Kumar, 2019).
These environmental factors include endocrine disrupting chemicals (EDC), heavy metals, and oxidative stress (Kshetrimayum, Sharma, Mishra, & Kumar, 2019).
Your Weight Isn’t a Cause of PCOS
It’s important to know that your weight didn’t cause PCOS. It starts in the womb. About 50% of individuals with PCOS without being in a large body.
There’re few drivers of symptoms of PCOS and kind of exacerbate symptoms such as insulin resistance, inflammation, and stress.
Insulin is a hormone that is produced by the pancreas that helps with glucose metabolism. Insulin resistance is when the cells aren’t responding to the hormone insulin to let glucose enter the cell, therefore the pancreas produces more insulin and leads to high insulin levels in the blood.
Insulin resistance appears in 70-90% of individuals with PCOS. Higher insulin levels increase androgens and inflammation, which increase the symptoms of PCOS.
Inflammation is an immune response that when it becomes chronic may lead to health issues. PCOS comes with a low grade chronic inflammation.
Inflammation increases insulin resistance and androgens, which also results in many symptoms of PCOS.
Stress increases cortisol levels , which is produced by the adrenal glands. Higher cortisol levels increase the production of androgens, especially DHEA-S.
PCOS has a range of symptoms that may not all be experienced by all individuals. These symptoms include:
- Irregular periods or long cycles
- Weight gain, especially around the abdominal area
- Extra hair growth on the face and the body (hirsutism)
- Hair loss from the head (male-pattern balding) or hair thinning
- Dark patches on the skin (acanthosis nigricans) on the back of the neck or under-arms or skin tags
- Carb cravings
PCOS Consequences and Risks
PCOS is a metabolic condition that has reproductive and psychological consequences. PCOS affects so many parts of the body. It affects metabolism, skin, heart and vessels, mood, and cancer risk.
PCOS is serious, and it could increase the risk for few serious conditions due to insulin resistance, inflammation, and high androgens:
- Type 2 diabetes and gestational diabetes
- Dyslipidemia and Heart Disease
- Fatty Liver Disease
- Cancer Risk (ovarian, endometrial, and breast)
- Mood Disorders
- Eating Disorders
- Obstructive Sleep Apnea
- Nutrient Deficiencies
PCOS is considered the most common endocrinological disorder that affects women. It is estimated that it affects 5-20% of women depending on the criteria used for diagnosis (Azziz et al., 2016). Many individuals with PCOS also are undiagnosed (up to 75%) (Wolf, Wattick, Kinkade, & Olfert, 2018).
PCOS and Ethnicity
There is no significant difference in prevalence of PCOS of 6% and 9% documented across the United States, the United Kingdom, Spain, Greece, Australia, Asia, and Mexico (Wolf, Wattick, Kinkade, & Olfert, 2018). However, Hispanics have a more severe phynotype of PCOS in terms of high androgens and metabolic criteria compared to Black and white Americans (Engmann et al, 2017).
We know that some ethnicities have higher levels of insulin resistance and diabetes and heart disease risk.
Ethnicity is also considered when assessing features of PCOS such as hair growth (hirsutism) as it is different in different ethnicities. See more below.
As a dietitian, it is not in my scope to diagnose conditions. But doctors do that by first excluding other conditions that may have a symptom overlap, because PCOS is a diagnosis of exclusion. These conditions include thyroid disease, prolactin excess, Cushing syndrome, Congenital adrenal hyperplasia ( Hoeger, Legro, & Welt, 2014)
There are few established criteria for PCOS to be diagnosed by a physician.
The Evidence-Based Guidelines (Teede et al., 2018) endorses the Rotterdam Criteria, which states that if at least 2 of the following 3 criteria are met, PCOS is diagnosed after excluding other conditions:
- Irregular Periods, which is having longer than 35 days cycles or 8 or less periods a year.
- High Androgens (e.g. testosterone) in lab work or appearing as signs and symptoms such as acne, hair loss, extra hair growth
- Poly-cystic ovaries that are 20 or more immature follicles appearing like a string of pearls on one or both ovaries from a transvaginal ultrasound
Diagnosis of PCOS can be given from just knowing the symptoms that you’re experiencing such as irregular periods, extra hair growth, acne, hair loss from the head, and other signs and symptoms. However, most of the time, your doctor may want to run a blood test of hormones and transvaginal ultrasound to check for cysts (immature follicles).
Your doctor may also assess your hirsutism using Modified Ferriman-Galleway Scoring System (mFG).
A score of 0 to 4 is given for nine areas of the body. A total score less than 8 is considered normal, a score of 8 to 15 indicates mild hirsutism, and a score greater than 15 indicates moderate or severe hirsutism. A score of 0 indicates absence of terminal hair.
Generalized hirsutism (score ≥8) is abnormal in the general United States population, whereas locally excessive hair growth (score <8) is a common normal variant.
The normal score is lower in some Asian populations and higher in Mediterranean populations. “On the basis of these studies, lower diagnostic cutoff points for East Asian women (mFG > 2 to > 5) and higher cutoff points for Middle Eastern (mFG > 8 to > 10), Mediterranean (mFG > 7 to > 10), and Mexican (> 11) women have been recommended.” (Afifi, Saeed, Pasch, Huddleston, Cedars, Zane, & Shinkai, 2017)
Labs that are Checked for PCOS
- LH: FSH
- Total Testosterone
- Free Testosterone
- Thyroid Panel
- Free T4
- Free T3
- Reverse T3
- Inflammation marker
- Blood sugar and insulin
- Fasting Insulin
- Vitamin D
- Vitamin B12 (if taking metformin)
- Lipid Panel
- Total Cholesterol
You might have heard people on the internet or on social media dividing PCOS into types such as insulin resistance, inflammation, adrenal, and post pill or thyroid types. Research does not mention those types. I believe people created these types to make it easier to understand PCOS and symptoms drivers. Many of these features may come together. You may see inflammation and insulin resistance at the same time for example. What evidence mentions is phenotypes based on the criteria found to diagnose PCOS.
- Phenotype A (Classic PCOS): irregular periods, high androgens, and poly-cystic ovaries
- Phenotype B (hyperandrogenic anovulation): irregular periods, and high androgens
- Phenotype C (ovulatory PCOS): high androgens, and polycystic ovaries
- Phenotype D (nonhyperandrogenic PCOS): irregular periods, and polycystic ovaries
PCOS is a complex and common hormonal condition. Scientists don’t know exactly what causes it, but genetics and environment play a role in the development of PCOS.
PCOS is driven by insulin resistance, inflammation, and stress. It also increases the risk for serious conditions. It gets diagnosed by a certain criteria after excluding other condition.
Follow this blog to learn more about PCOS and treatment options.
Afifi, L., Saeed, L., Pasch, L. A., Huddleston, H. G., Cedars, M. I., Zane, L. T., & Shinkai, K. (2017). Association of ethnicity, Fitzpatrick skin type, and hirsutism: A retrospective cross-sectional study of women with polycystic ovarian syndrome. International journal of women’s dermatology, 3(1), 37-43.
Azziz, R. (2014). Polycystic ovary syndrome: what’s in a name?. The Journal of Clinical Endocrinology & Metabolism, 99(4), 1142-1145.
Azziz, R., Carmina, E., Chen, Z., Dunaif, A., Laven, J. S., Legro, R. S., … & Yildiz, B. O. (2016). Polycystic ovary syndrome. Nature reviews Disease primers, 2(1), 1-18.
Davies, M. J., Marino, J. L., Willson, K. J., March, W. A., & Moore, V. M. (2011). Intergenerational associations of chronic disease and polycystic ovary syndrome. PLoS One, 6(10), e25947.
Engmann, L., Jin, S., Sun, F., Legro, R. S., Polotsky, A. J., Hansen, K. R., … & Witter, F. (2017). Racial and ethnic differences in the polycystic ovary syndrome metabolic phenotype. American journal of obstetrics and gynecology, 216(5), 493-e1.
Escobar-Morreale, H. F. (2018). Polycystic ovary syndrome: definition, aetiology, diagnosis and treatment. Nature Reviews Endocrinology, 14(5), 270-284.
Farghaly, S. A. (2014). Current diagnosis and management of ovarian cysts. Clinical and experimental obstetrics & gynecology, 41(6), 609-612.
Hoeger, K. M., Legro, R. S., & Welt, C. K. (Eds.). (2014). A patient’s guide: polycystic ovary syndrome (PCOS). The Journal of Clinical Endocrinology & Metabolism, 99(1), 35A-36A.
Kshetrimayum, C., Sharma, A., Mishra, V. V., & Kumar, S. (2019). Polycystic ovarian syndrome: Environmental/occupational, lifestyle factors; an overview. Journal of the Turkish German Gynecological Association, 20(4), 255.
Leibel, N. I., Baumann, E. E., Kocherginsky, M., & Rosenfield, R. L. (2006). Relationship of adolescent polycystic ovary syndrome to parental metabolic syndrome. The Journal of Clinical Endocrinology & Metabolism, 91(4), 1275-1283.
Merriam-Webster. (n.d.). Syndrome. In Merriam-Webster.com dictionary. Retrieved October 26, 2021, from https://www.merriam-webster.com/dictionary/syndrome
Teede, H. J., Misso, M. L., Costello, M. F., Dokras, A., Laven, J., Moran, L., … & Norman, R. J. (2018). Recommendations from the international evidence-based guideline for the assessment and management of polycystic ovary syndrome. Human reproduction, 33(9), 1602-1618.
Wolf, W. M., Wattick, R. A., Kinkade, O. N., & Olfert, M. D. (2018). Geographical prevalence of polycystic ovary syndrome as determined by region and race/ethnicity. International journal of environmental research and public health, 15(11), 2589.