Getting a PCOS Diagnosis

Polycystic ovary syndrome (PCOS) is a condition caused by the effects of hormones on the ovaries (the egg-producing reproductive organs). PCOS is defined by the growth of many small cysts on the ovaries that can be seen on an ultrasound. Symptoms can include irregular or missed menstrual periods, acne, and/or excess hair on your face.

Home tests and certain blood tests can show changes, such as high hormone levels, that can cause these symptoms. Since PCOS symptoms are common in several other conditions, those must be ruled out before you get a PCOS diagnosis.

PCOS is often undiagnosed even though it impacts up to 10% of females of childbearing age. Not knowing you have PCOS can threaten your long-term health. Having this problem raises your risk of developing severe conditions like diabetes, high blood pressure, and high cholesterol.

This article describes PCOS symptoms, how to get a diagnosis, and what happens after a diagnosis.

Signs of PCOS Before an Official Diagnosis

Everyone experiences PCOS differently. Signs of PCOS usually begin around the time of puberty, though it is not uncommon for symptoms to begin in late adolescence or early adulthood. Many symptoms are related to higher androgen levels like testosterone.

The following signs of PCOS can occur before you seek a healthcare provider for an official diagnosis:

Menstrual Irregularity

With PCOS, people usually have oligomenorrhea (infrequent or unusually light bleeding during periods), with fewer than six to eight menstrual periods annually. Menstrual irregularities can also include the following symptoms:

• Amenorrhea (lack of menstrual periods)
• Very heavy periods
• Anovulatory periods (bleeding without ovulation)

It is also possible to have normal cycles, especially during puberty.

Being overweight increases the likelihood of irregular periods with PCOS.

Weight Gain

Around 50% of people with PCOS experience gradual weight gain, especially around the waist, as well as obesity. Obesity usually develops at the same time as puberty in people with PCOS. Weight gain may occur quickly with no obvious cause within a few months. The weight may also be difficult to lose despite diet and exercise.

However, it is a myth that PCOS only affects overweight people. About 20% of people with PCOS have normal or low body mass index (BMI). Having this variation, called lean PCOS, can extend the delay for these people in getting a diagnosis because they don't have the excess weight that's considered a classic symptom of PCOS.

Infertility

PCOS is the most common cause of infertility related to ovulation. Because PCOS interferes with regular ovulation, it can be harder to get pregnant with PCOS. People who have few other classic PCOS symptoms may not find out they have the condition until they try to get pregnant, encounter difficulty, and seek medical care.

While PCOS is related to infertility, it is a myth that you can't get pregnant with PCOS. This syndrome is one of the most treatable causes of infertility in females.

Acne/Skin Problems

PCOS can cause acne on your face, chest, or back that starts in puberty and lasts well into your adult years. This type of acne can also be more difficult to clear with traditional acne treatments.

Skin tags or acanthosis nigricans (dark patches that look dirty but never come off when you scrub them) are signs of high insulin associated with PCOS. Insulin levels rise in PCOS as the body doesn't respond to this blood sugar-regulating hormone efficiently.

Excess Hair

Hirsutism, a term for excess hair growth in females, is common with PCOS. The hair growth tends to increase in areas most often seen in males, such as the upper lip, back, chest, abdomen, inner thigh, chin, and jawline.

Hair Loss

Hair loss in PCOS, called female androgenic alopecia (FAGA) or female pattern hair loss, causes thinning hair on top of your head and along your hairline. However, it doesn't lead to baldness.

Since many of these symptoms are not unique to PCOS, people may not recognize them as being problematic. As a result, many people don't seek a diagnosis until they have abnormal periods or fertility problems. Most people find out they have PCOS in their 20s and 30s.

How to Get a PCOS Diagnosis

To get a PCOS diagnosis, the Endocrine Society guidelines require that you have two of the three following conditions:

• Hyperandrogenism (signs of increased androgen levels or increased levels confirmed by a blood test)
• Ovulatory dysfunction (irregular ovulation indicated by an irregular or absent menstrual cycle)
• Polycystic ovaries (multiple cysts on one or both ovaries)

Since there are no standard guidelines, the recommendations regarding how to test for PCOS can vary across different specialties.

Despite meeting PCOS criteria, diagnosis in adolescents is typically reserved until two to three years after a person's first menstrual cycle. This is because it can take up to two years after a person starts menstruating for the cycle to become regular.

A PCOS diagnosis can often be confirmed with the following evaluations:

• Complete physical examination with an emphasis on evaluating symptoms of increased androgen levels, such as acne and extra hair growth
• Medical history that includes the regularity of your menstrual cycle and whether you have a family history of PCOS
• Pelvic examination
• Blood tests
• Imaging to detect cysts on the ovaries
  

PCOS Diagnosis Using Ultrasound and Labs

If you have symptoms that align with PCOS, ultrasound and labs can help confirm the diagnosis.

Ultrasound

A transvaginal ultrasound is a type of ultrasound that can help in diagnosing PCOS. This type of ultrasound involves placing a lubricated ultrasound probe in your vagina to view your reproductive organs from the inside.

The images from a transvaginal ultrasound can show whether an excessive number of small follicles are present in your ovaries. The appearance of these follicles is a defining characteristic of PCOS.

In cases of PCOS, ultrasound images typically show many small cysts that usually occur around the surface or just below the surface layer of the ovary. Their appearance is often compared to a "string of pearls."

Blood Tests

While there is not just one blood test to determine PCOS, your healthcare provider may confirm your diagnosis using blood tests that check levels of one or more of the following biomarkers of this syndrome:

• Androgen levels, including testosterone
• Insulin levels
• Levels of the following hormones involved in ovulation: Luteinizing hormone (LH), follicle-stimulating hormone (FSH), progesterone
  

Ruling Out Other Conditions

Since many symptoms of PCOS are common to other disorders and diseases, getting a PCOS diagnosis involves ruling out other medical conditions, including tumors of the ovaries or adrenal glands. Based on your symptoms, your healthcare provider may request additional blood tests to rule out the following conditions:

• Pregnancy
• Endometrial cancer
• Thyroid disease
• Late-onset congenital adrenal hyperplasia
• Hyperprolactinemia (increased production of the prolactin hormone by the pituitary gland)
• Cushing's syndrome (a tumor on the pituitary or adrenal glands

Risks of Delayed PCOS Diagnosis

It is not uncommon to experience a delay in getting a PCOS diagnosis. Up to 75% of people with PCOS remain undiagnosed despite visiting a healthcare provider.

Research indicates that it is not uncommon for people to have symptoms for two years or longer and visit up to three or more healthcare professionals before a diagnosis of PCOS is established. Even with a diagnosis, people report unmet information needs about their condition.

Since PCOS affects your health and well-being at all stages of life, a delayed PCOS diagnosis can have both short-term and long-term consequences. In the short term, researchers report a link between the length of time it takes to receive a PCOS diagnosis and an increase in symptoms of anxiety and depression among those who have symptoms.

Having PCOS increases your risk of developing serious health problems, especially if you are overweight. The longer you go without a diagnosis, the longer you remain at risk for health problems that can impact your fertility, mood, and quality of life without a diagnosis or treatment. These conditions include:

• Diabetes mellitus
• Gestational diabetes
• Heart disease
• High blood pressure
• High cholesterol
• Obstructive sleep apnea
• Stroke
• Endometrial cancer
• Metabolic syndrome

After PCOS Diagnosis: What Are the Treatment Options?

While there is no cure for PCOS, treatment can help you manage your symptoms and reduce your risk of any potential problems. Common treatment options like PCOS medication include the following:

Lifestyle Changes

Losing weight and being physically active can improve many PCOS symptoms. Following a diet low in dairy and carbohydrates can help you lose weight. This may help you achieve the following:

• Restore ovulation and achieve more regular menstrual cycles
• Reduce your risk of diabetes and lower cholesterol levels
• Reduce symptoms like hair loss and acne
• Reduce PCOS-linked depression

Hormonal Oral Contraceptives

Hormonal oral contraceptives, or birth control pills, are the primary treatment for people with PCOS who don't want to become pregnant. These medications contain a combination of estrogen and progestin. They can achieve the following:

• Restore regular menstrual periods
• Help clear acne and reduce excess hair growth
  
• Reduce the level of androgens produced by the ovaries, leading to a reduction in androgen activity

Insulin-Sensitizing Agents

Insulin-sensitizing agents can make the body more responsive to insulin and stabilize glucose levels. Glucophage (metformin) is the best-studied insulin-sensitizing agent available in the United States. It can help achieve the following:

• Support weight loss
• Clear acne and reduce hair growth
• Help periods become regular
• Lower cholesterol levels
• Slightly reduce infertility linked with PCOS

Anti-Androgens

Anti-androgens prevent the production of androgens or limit the activities of the effects of those hormones. Aldactone (spironolactone) is the most commonly prescribed androgen receptor blocker. It is typically used in combination with oral contraceptives because this drug can lead to irregular periods and potential congenital (present at birth) anomalies or disabilities.

Anti-androgens can achieve the following:

• Lower androgen levels
• Reduce excess hair growth
• Help clear acne

Fertility Drugs

Fertility drugs can induce ovulation in people with PCOS, thereby making it easier for them to get pregnant. The Endocrine Society recommends Clomid (clomiphene) and Femara (letrozole) for anovulation and infertility in people with PCOS.

Removing Unwanted Hair

There are many options for hair removal. A drug called Vaniqa (eflornithine) is a cream that slows hair growth, especially on the face. Other options for hair removal include the following:

• Shaving
• Plucking
• Tweezing
• Waxing
• Depilatory creams
• Electrolysis
• Laser hair removal

Acne Treatments

There are many prescription and over-the-counter medications to treat acne. The type of treatment used depends on the severity of your acne and its duration. Common treatments cause the following:

• Benzoyl peroxide (2.5% to 10%)
• Glycolic acid
• Salicylic acid (0.5% to 2%)
• Sulfur
• Topical antibiotics: Clindamycin, erythromycin 
• Topical retinoids: Retin-A Micro (tretinoin), Tazorac (tazarotene), Differin (adapalene)
  

PCOS Diagnosis Follow-Up Testing

When a diagnosis of PCOS is confirmed, your healthcare provider may order follow-up testing:

• Blood glucose
• Cholesterol testing
• Oral glucose tolerance test (to diagnose prediabetes or diabetes)
• Sleep study for obstructive sleep apnea
• Testosterone and dehydroepiandrosterone sulfate (DHEAS) 

If you have PCOS, you should be seen regularly to check on the metabolic and reproductive issues that may occur. It is also important to maintain a check on symptoms of depression and anxiety, which are common with PCOS.

Summary

Polycystic ovary syndrome (PCOS) occurs as a result of a hormone imbalance. The syndrome causes a set of symptoms that include insulin resistance and higher levels of androgen hormones.

PCOS is one of the most common causes of infertility. It hinders normal ovulation (the release of eggs) and stable menstrual periods. Other common symptoms include acne, extra weight, and excess hair on your face, chest, and back.

Diagnosis is by symptoms, blood tests, and imaging. Since PCOS symptoms are common in other ailments, those must be ruled out.

While there is no cure for PCOS, treatments can reduce symptoms of this lifelong problem. Getting an early diagnosis can reduce your risk of having one of the more severe health problems linked to PCOS.