Polycystic Ovary/Ovarian

Syndrome (PCOS)
Underrecognized, Underdiagnosed,
and Understudied

2019 www.nih.gov/women
Acknowledgments
This informational booklet was developed as part of Lt. Col. Dr. Kim Hopkins’ postdoctoral training with Dr.
Samia Noursi at ORWH. Many thanks to special volunteers Nathan Dinh (University of Richmond) and Bani
Saluja (University of Maryland), who played a major role in compiling the information in this booklet.

Table of Contents
Section I: What is PCOS? ........................................................... 1

Section II: Defining PCOS through the years ............................. 2

Section III: Signs of PCOS ........................................................... 3

Section IV: Risk factors and preventive measures ..................... 6

Section V: Further information for health care

providers and researchers .................................................... 8

Section VI: Economic impact ..................................................... 9

Section VII: How NIH is addressing PCOS ............................... 10

Section VIII: Conclusion .......................................................... 11

Section IX: Definitions ............................................................ 12

References .............................................................................. 13

ii
Polycystic Ovary/Ovarian Syndrome:
Underrecognized, Underdiagnosed, and Understudied

Section I: What is PCOS?

Polycystic ovary/ovarian syndrome (PCOS) is a set of symptoms
related to an imbalance of hormones that can affect women and
girls of reproductive age.1–7 It is defined and diagnosed by a
combination of signs and symptoms of androgen excess,
ovarian dysfunction, and polycystic ovarian morphology on
At least 70%
ultrasound.2 of women with PCOS
This informational booklet provides guidance for those who remain undiagnosed in
are concerned that they may have PCOS and those who have primary care*
already been diagnosed. There is also information on current
efforts to understand and treat PCOS.

* Tomlinson, J. A., Pinkney, J. H., Evans, P., Millward, A., & Stenhouse, E. (2013). Screening for diabetes and
cardiometabolic disease in women with polycystic ovary syndrome. The British Journal of Diabetes & Vascular Disease,
13(3), 115–123. doi:10.1177/1474651413495571

1
Section II: Defining PCOS through the years
To better understand what PCOS is, it is important to know how PCOS is defined and categorized. Although
it is called polycystic ovary/ovarian syndrome, PCOS is not primarily defined by ovarian cysts.8 Rather,
PCOS is defined by the presence of at least two of three diagnostic criteria. These diagnostic criteria have
been defined three separate times—by the National Institutes of Health (NIH) in 1990, by the European
Society of Human Reproduction and Embryology (ESHRE) and the American Society for Reproductive
Medicine (ASRM) in 2003 (also known as the Rotterdam criteria), and by the Androgen Excess and PCOS
Society (AE-PCOS) in 2006. In 2012, NIH endorsed the 2003 Rotterdam criteria for PCOS. See the various
definitions below:

NIH 2012
ESHRE/ASRM acceptance of
Criteria NIH 1990 (Rotterdam) 2003 AE-PCOS 2006 Rotterdam 2003

Hyperandrogenism

Ovarian dysfunction

Polycystic ovarian
morphology

2 of 2 required 2 of 3 required 2 of 3 required 2 of 3 required

Exclusion of conditions
that mimic PCOS

Specific disorders with signs and symptoms that overlap with those of PCOS must be ruled out for an
accurate PCOS diagnosis. These include hyperprolactinemia, non-classic congenital adrenal hyperplasia,
and Cushing’s syndrome. Because of the diagnostic challenges involved with PCOS, primary care providers
might recommend seeing a gynecologist, which is a doctor who specializes in the health of a woman’s
reproductive system, an endocrinologist, which is a doctor who specializes in hormones, or a reproductive
endocrinologist, which is a doctor who specializes in a woman’s reproductive system, hormones, and
infertility.

2
Section III: Signs of PCOS

Dermatological Features

Hirsutism Balding Acne

Oily skin Skin discoloration

(acanthosis nigricans)

High levels of androgens typically lead to various dermatological symptoms.9,10 These include
hirsutism (coarse and dark hair on the body areas where men typically grow hair—e.g., the
face, abdomen, chest, and back), acne, and balding/alopecia. In adolescents, some of the
dermatological symptoms may be caused by puberty rather than PCOS.

Menstrual Disorders

Amenorrhea Oligomenorrhea Menorrhagia

Menstrual disorders may vary, from complete absence of menstruation (amenorrhea) to

menstruation delayed to 35 days or more (oligomenorrhea) to heavy bleeding (menorrhagia).
Women with irregular menstrual periods have a 91% chance of having PCOS.11 Those with PCOS
are 15 times more likely to report infertility.12

3
 Polycystic Ovaries
Uterus

Normal ovary

Enlarged ovary Excessive follicles

(magnified)

Excessive follicles, which is defined as 25 or more follicles that are 2 mm to 10 mm in a single

view of a transvaginal ultrasound, may be present in PCOS. Additionally, increased ovarian
volume, an ovary that is more than 10 mL, may be present.

a. Health implications

PCOS Affects Many Areas of a Woman’s Life

Metabolic
Psychological Dermatological obesity, metabolic
anxiety, depression hirsutism, acne syndrome, insulin
resistance, type 2
diabetes

Sleep Reproductive
disordered sleep, infertility,
sleep apnea preeclampsia,
miscarriage

4
b. An international disease in many forms
Between 5% and 26% of women are affected by PCOS, depending on the diagnostic criteria applied.4,13
Women throughout the lifespan are at risk of being affected by PCOS, and women from all regions
of the world—including Australia,14 China,15 Denmark,16 Greece,17 India,18 the Netherlands,19 Spain,4
the United Kingdom,20 and the U.S.1—have reported cases of PCOS. There are conflicting results
concerning differences in PCOS rates by race, but severity and expression of symptoms may vary based
on environmental factors.21,22 Understanding differences in symptoms among different racial and ethnic
groups can help with the diagnosis:
• Relatively mild in White women creases) in Southeast Asians and indigenous
Australians
• Higher body mass index (BMI) in White
women, especially in North America and • Lower BMI and milder hirsutism in East Asians
Australia
• Increased prevalence of metabolic syndrome
• More severe hirsutism in Middle Eastern, in Black adolescents and young adults
Hispanic, and Mediterranean women with PCOS compared with their White
counterparts23
• Increased central adiposity, insulin resistance,
diabetes, metabolic risks, and acanthosis • Higher BMI and metabolic features in Africans
nigricans (dark discoloration in body folds and

c. Across the lifespan

Women who are affected by PCOS are at risk for chronic disease progression, which carries significant
public health implications across the lifespan:

Adolescence
Diagnosing PCOS in adolescents is difficult because PCOS and puberty have similar features. These
include irregular menstrual cycles and acne. For an accurate diagnosis, adolescents should have all
three elements of the Rotterdam criteria for PCOS. Hyperandrogenemia is the main marker for PCOS
in adolescents.7 Oligomenorrhea or amenorrhea should be present for at least 2 years after the first
period. Forty percent of adolescents with menstrual irregularity have polycystic ovaries.

Reproductive age
Fertility issues and hirsutism are the primary issues for women at reproductive ages. Infertility is
caused by high levels of androgen and luteinizing hormones, which can lead to irregular menstrual
cycles and anovulation, which is an absence of ovulation during a menstrual cycle.24 Women with
PCOS have three to four times the rate of pregnancy-induced hypertension and preeclampsia.24 There
is also a significantly increased risk of endometrial cancer in women with PCOS.25

Late reproductive to menopausal age

In addition to endometrial cancer, women over 54 years of age with PCOS were found to have a
significant risk of ovarian cancer, though the risk for breast cancer is not significantly increased by
having PCOS.25 Older women with PCOS have a fourfold to sixfold increase of diabetes compared with
women without PCOS.7 Older women with PCOS also have more severe hirsutism, in addition to an
increased number of metabolic and cardiovascular risk factors.26

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d. Obesity and cardiovascular risks
The metabolic abnormalities caused by PCOS, specifically increased abdominal fat and insulin resistance,
contribute extensively to increased risk of type 2 diabetes and cardiovascular disease. For women with
PCOS, 50–80% have insulin resistance,5 61% are overweight or obese,27 and 50% become prediabetic or
diabetic before age 40.28

e. Psychosocial implications
In addition to physical symptoms, women with PCOS are at an increased risk of experiencing mental health
issues, including anxiety and depression associated with infertility, obesity, and hirsutism.29
1. Anxiety. Anxiety has been found to be significantly higher in women with PCOS compared with
controls.30-32 PCOS may introduce an additional layer of complexity to the psychological profile and
should be considered when evaluating the mental health of women.
2. Depression. The prevalence and risk of depression and depressive disorders in women with PCOS
are 40–64%, significantly higher than in women without PCOS.33,34 Women with PCOS are four
times more likely to be at risk for depression compared with women without PCOS.35

f. Coping with worries about having PCOS

If you’ve been told you have PCOS, you may feel frustrated or sad.36 Also, you may feel relief that there are
reasons and possible treatments for the symptoms you have been having such a hard time dealing with—
e.g., keeping a healthy weight, hirsutism, acne, or irregular periods. It can be difficult having a diagnosis
without an exact cure. However, it’s important for women with PCOS to know they are not alone. Finding
a support network and a health care provider who knows a lot about PCOS and is someone you feel
comfortable talking with is very important. Even though results may take a long time, it is important to
keep working on a healthy lifestyle and not let PCOS get you down. Many women with PCOS report that
talking with a counselor about their concerns can be helpful.36

Section IV: Risk factors and preventive measures

What factors increase the likelihood of developing PCOS? There are four main risk factors:

a. Genetics
If a close family member, such as a sister or mother, has the condition, you have
an increased, but not guaranteed, chance of developing PCOS.37,38 Even without a
family history of PCOS, there are other risk factors that can lead to its development.

b. Diet
Additionally, diet has been found to be a contributing factor for PCOS. Fats and proteins from one’s diet
can form advanced glycation end products (AGEs) when exposed to sugar in the bloodstream.39 These
compounds are known to contribute to increased bodily stress and inflammation, which have been linked
to diabetes and cardiovascular disease.40 PCOS patients already have an increased likelihood for metabolic
syndrome, cardiovascular issues, and diabetes. Thus, it’s best to limit exposure to AGEs. Animal-derived
foods that are high in fat and protein are generally AGE-rich and prone to more AGE formation during
cooking. In contrast, foods that are low on the glycemic index—such as vegetables, fruits, whole grains,
and milk—contain relatively few AGEs, even after cooking.40

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c. Lifestyle
Everyday habits greatly affect the development and severity of PCOS.
• Obesity is widely recognized as aggravating PCOS, so managing a healthy weight, especially abdominal
circumference, is recommended.41
• Exercise helps to reduce many PCOS symptoms, such as depression, inflammation, and excess weight.
Aim to incorporate exercise into your lifestyle.41 The Centers for Disease Control and Prevention (CDC)
recommends 150 minutes (2 hours and 30 minutes) of moderate-intensity exercise per week or 75
minutes of high-intensity exercise per week and incorporating strength training 2 days per week.42
• In addition to exercise, increase daily activity by taking the stairs, going on short walks, and stretching
throughout the day. No matter the movement, stay consistent and choose an enjoyable activity.
• Women may want to limit inflammatory foods—such as dairy products, foods with gluten, and foods
high in glycemic load, such as potatoes, white bread, and sugary desserts—as much as possible.43 But if
those foods do not cause bodily aggravation, then there is no need to eliminate them completely.

d. Environmental exposure risks

Environmental exposures to endocrine-disrupting chemicals may lead to female reproductive health
issues, including PCOS. Research shows that endocrine-disrupting chemicals may pose the greatest
risk during prenatal and early postnatal development, when organ systems are developing. Endocrine-
disrupting chemicals can be found in many of the everyday products we use, including some plastic
bottles and containers, liners of metal food cans, detergents, flame retardants, food, toys, cosmetics,
and pesticides. Limiting personal exposure to endocrine-disrupting chemicals may benefit reproductive
health.44

Long-term medical follow-ups

It’s important to follow up regularly with your health care provider and make sure you take all the
medications prescribed to regulate your periods and lessen your chances of developing additional chronic
diseases. Because women with PCOS have a higher chance of developing diabetes and having other health
problems,45 your health care provider may suggest having a:
• Blood sugar test once a year
• Hemoglobin A1C test (a test that tells how high your
blood sugar has been the past 2–3 months) once a
year or a glucose tolerance test every few years
• Vitamin D level test
• Thyroid function test

7
Section V: Further information for health care
providers and researchers
a. Lack of awareness and diagnoses
The existence of multiple diagnostic criteria
has made it difficult for health care providers
to accurately and consistently diagnose
women with PCOS.46 This in turn causes
patients to be dissatisfied with the diagnostic
experience. In an international survey of
1,385 women, only 35% of women were
satisfied with their diagnostic experience.47
And 84% of women were dissatisfied with
the information provided by their health care
providers about PCOS and its symptoms.47
Some health care providers are less aware
of the various diagnostic criteria and
phenotypes of PCOS.47 Increased awareness
of PCOS, its causes, and its symptoms may
help the process of diagnosis and bring appropriate subsequent care. As a resource for patients and health
care providers, there are international evidence-based guidelines for the assessment and management of
PCOS published by researchers at Monash University in Australia. They fully endorse the Rotterdam PCOS
diagnostic criteria in adults, which help serve as a PCOS diagnostic tool for medical professionals.22

b. Possible phenotypes
Phenotypes are the observable characteristics of an individual. Women with PCOS can have any
combination of the following phenotypes: excess androgen levels, ovarian dysfunction, and polycystic
ovarian morphology. The table below depicts the possible phenotypes from the different combinations3:

Polycystic ovarian
Phenotype Hyperandrogenism Ovarian dysfunction morphology

Type A

Type B

Type C

Type D

Type A is the most severe phenotype, and D is the least severe phenotype. Types A and C are the most
prevalent phenotypes.48

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c. Treatment options
Currently, there is no cure for PCOS, but symptoms can be managed with lifestyle changes and
medications. Increasing daily activity—along with eating a high-fiber, low-sugar diet with lots of
vegetables, whole grains, and fruits—will help to reduce excess weight and maintain a healthy waist
circumference.41 Also, avoiding or reducing intake of processed foods, trans fats, and saturated fats helps
to maintain stable blood sugar levels.49 Consider consulting a nutritionist or dietitian. Furthermore,
quitting smoking (or never starting) will also improve overall health.
In addition to these lifestyle changes,
there are medications that can help with
the management of PCOS, which should
be tailored to each individual’s risk
profile, desires, and treatment goals:50
• Low-androgen oral contraceptives
that contain drospirenone or
progestin-only pills, known as
minipills51
• An inositol supplement (myo-
inositol, D-chiro-inositol, or a
combination of the two), which
can help manage PCOS symptoms,
such as hirsutism, acne, difficulty
conceiving, etc.52
• Metformin
• Lipid-lowering agents for women
with lipid abnormalities

Section VI: Economic impact

The cost associated with PCOS derives from treatment of
symptoms, including type 2 diabetes ($1.77 billion),

$4.36 billion
menstrual dysfunction ($1.35 billion), and hirsutism
($622 million).53 In comparison, the U.S. health care
system spends $237 billion every year to treat diabetes
and $199 billion on heart disease and stroke.54 A team of Estimated annual cost of PCOS
researchers published a study on the economic impact to the U.S. health care
of PCOS in 2005; see the reference immediately below.** system in 2005**
(This was the most up-to-date study on the economic impact
at the time of the publication of this booklet.)

** Azziz, R., Marin, C., Hoq, L., Badamgarav, E., & Song, P. (2005). Health care-related economic burden of the polycystic
ovary syndrome during the reproductive life span. Journal of Clinical Endocrinology and Metabolism, 90(8), 4650–4658.
doi:10.1210/jc.2005-0628

9
Section VII: How NIH is addressing PCOS
PCOS has been addressed by several institutes across
the National Institutes of Health (NIH), including the
Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD). Through its
intramural and extramural organizational units, NICHD
supports and conducts a broad range of research to learn more about the causes of PCOS, its risk factors,
and its possible treatments. Though research has demonstrated that PCOS has not just reproductive but
also metabolic and mental health manifestations, NICHD funds PCOS research with a particular focus on
reproductive health. See more at https://www.nichd.nih.gov/health/topics/pcos.
The National Institute of Environmental Health Sciences
(NIEHS) has also provided significant contributions
in the field of PCOS through its funding support in
intramural and extramural research. The studies
funded by NIEHS focus on environmental factors that
may play a significant role in the development of PCOS. These include exploring the role of estrogen
signaling dysfunction in PCOS development,55,56 the origin of theca cells and the effects of irregular
differentiation,57,58 and environmental factors and genetic predispositions for PCOS through a large
multiphase study involving twin sisters.59,60 NIEHS efforts focus on causes and origins of PCOS and the
development of treatments and preventive measures.
The National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK) is studying the effects of
lifestyle changes on prediabetes metabolic syndrome
and insulin resistance, for which PCOS is a risk factor.
On December 21, 2017, the U.S.
Senate passed S. Res. 336 by
unanimous consent, recognizing the
seriousness of PCOS. The resolution
encourages States, territories,
and local governments to support
increasing awareness of PCOS;
educate women, girls, health care
professionals, and the general public;
improve efforts to diagnose and
treat PCOS; and improve the quality
of life and outcomes for women
and girls with PCOS. The resolution
also recognizes the need for further
research, improved treatment and
care options, and a cure for PCOS,
acknowledging the struggles affecting
all women and girls afflicted with
PCOS residing within the U.S.

10
Section VIII: Conclusion
NIH has conducted valuable research on PCOS. Yet there are critical gaps remaining in the understanding
of this disorder, such as the connections of comorbidities to PCOS. Women with PCOS make up the largest
group of women at risk for developing type 2 diabetes and cardiovascular disease. They are also at a
threefold greater risk for developing uterine cancer. In addition, women with PCOS are at higher risk for
mental health disorders—such as anxiety and depression. Because of the serious effects that PCOS can
have on many aspects of health, collaborative research efforts will be essential for advancing diagnosis
and treatments and reducing the suffering of women with this disorder.

Resources
There are many efforts to address PCOS across the country, including efforts by the American Society
for Reproductive Medicine, the American College of Obstetricians and Gynecologists, and the Androgen
Excess and PCOS Society. Another noteworthy organization is PCOS Challenge: The National Polycystic
Ovary Syndrome Association. It is a 501(c)(3) nonprofit support and advocacy organization for women and
girls with polycystic ovary syndrome. PCOS Challenge’s mission is to raise public awareness of PCOS and
help PCOS patients overcome their symptoms and reduce their risk for life-threatening related diseases,
such as diabetes, cardiovascular disease, and cancer. The organization’s goal is for PCOS to be treated as
a public health priority. Through its national advocacy initiatives, the PCOS Challenge shines light on the
need for increased awareness, improved and expanded access to care, and increased funding for PCOS
research. It funds efforts to help fight PCOS and organizes the country’s largest conference dedicated to
education and raising awareness, which typically occurs in mid-September.
The PCOS Awareness Association (PCOSAA) holds another conference around the same time annually.
PCOSAA is a worldwide nonprofit dedicated to advocacy for PCOS. The organization and its volunteers
are raising awareness of this disorder and providing educational and support services to help people
understand what the disorder is, teach people how it can be treated, and decrease the impact of its
associated health outcomes.

September is Polycystic
Ovary/Ovarian Syndrome
(PCOS) Awareness Month

World PCOS Day is September 1 and marks the start of PCOS Awareness Month. If you see an abundance
of teal in September, note that it is the awareness color for the condition.

11
Section IX: Definitions
The following definitions were taken or adapted from the NCI Dictionary of Cancer Terms, the NCI
Dictionary of Genetics Terms, the MedlinePlus Medical Dictionary, or NICHD:
amenorrhea – The absence of a woman’s monthly absorb glucose (sugar) for energy and to control the
menstrual period. Occurs when a woman does not get amount of sugar in the blood. Insulin resistance occurs
her period by age 16 or when she stops getting her when cells in key metabolic tissues—liver, muscle, and
period for at least 3 months and is not pregnant. fat—use insulin less effectively than normal. As a result,
a person’s blood sugar level rises above a normal range,
androgen – A type of hormone that promotes
placing the person at risk for health problems such as
the development and maintenance of male sex
diabetes and kidney, eye, heart, and nerve disease.
characteristics. Testosterone is one main type of
androgen. luteinizing hormone (LH) – A hormone made in the
pituitary gland. In females, it acts on the ovaries to make
cardiovascular disease – A broad term for problems
follicles release their eggs and to make hormones that
with the heart and blood vessels. These problems are
get the uterus ready for a fertilized egg to be implanted.
often caused by atherosclerosis and occur when fat and
In males, it acts on the testes to cause cells to grow
cholesterol are built up in blood vessel (artery) walls.
and make testosterone. Also called interstitial cell–
cyst – A closed, saclike pocket of tissue that can form stimulating hormone and lutropin.
anywhere in the body. It may be filled with fluid, air,
menorrhagia – Heavy menstrual periods or excessive
pus, or other material. Most cysts are benign (not
bleeding.
cancerous).
oligomenorrhea – Having infrequent menstrual
dyslipidemia – High levels of lipids (triglycerides or
periods—specifically, having periods that occur more
cholesterol) in the blood.
than 35 days apart.
estrogen – A type of hormone that helps the body
perimenopause – The time before menopause that may
develop and maintain female sex characteristics and
begin several years before one’s last menstrual period.
the growth of long bones. Estrogens are made by the
Signs of perimenopause include more frequent periods
body but can also be made in a laboratory. They may be
at first and then occasional missed periods, periods that
used as a type of birth control and to treat symptoms
are longer or shorter, and/or changes in the amount of
of menopause, menstrual disorders, osteoporosis, and
menstrual flow.
other conditions.
phenotype – The observable characteristics in an
etiology – The cause or origin of a disease.
individual resulting from the expression of genes and
follicle – A sac or pouchlike cavity formed by a group of influences of the environment; the clinical presentation
cells. In the ovaries, one follicle contains one egg. In the of an individual with a particular genotype.
skin, one follicle contains one hair.
theca cells – Endocrine cells associated with ovarian
follicle-stimulating hormone (FSH) – A hormone made follicles that play an important role in fertility by
in the pituitary gland. In females, it acts on the ovaries producing the androgen needed for ovarian estrogen
to make the follicles and eggs grow. In males, it acts on production.
the testes to make sperm. Also called follitropin.
type 2 diabetes – The most common form of diabetes,
hirsutism – The growth of coarse dark hair above a disease in which the body’s ability to produce or
the lips or on the chin, chest, abdomen, or back that respond to the hormone insulin is impaired, resulting
resembles male-pattern hair growth. in elevated levels of glucose (sugar) in the blood. Type
2 diabetes is strongly associated with insulin resistance
hyperandrogenism/hyperandrogenemia – Ovarian and with subsequent dysfunction in normal pancreatic
overproduction of testosterone, leading to the insulin production. Risk factors for developing type 2
development of male characteristics in a woman. diabetes include obesity, older age, belonging to certain
insulin/insulin resistance (IR) – Insulin is a hormone racial or ethnic minority groups, and the presence of
produced by the pancreas. It is needed to help cells other diseases, such as PCOS.

12
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For more information and resources,
visit the ORWH page: www.nih.gov/women

Publication Number 19-OD-8095

This publication was publicly funded by the
NIH Office of Research on Women’s Health.