PCOS Overview

What is Polycystic Ovarian Syndrome (PCOS)?

Polycystic Ovary Syndrome, or PCOS, is a health condition that affects about 10 million people in the world.

The exact cause is unknown, but it is considered a hormonal problem. Genetics and environmental factors are believed to be involved in the development of PCOS. It is a leading cause of female infertility and is responsible for a number of symptoms that can affect the body physically and emotionally.

Despite the name, many people do not have cysts on their ovaries. In 2013, an independent panel of experts recommended to the National Institutes of Health that the name be changed because the name is confusing and hinders patient care and research efforts.

Hormones involved in PCOS include:

• Androgens. All females make androgens (also referred to as “male hormones”), but there are often higher levels of androgens in women with PCOS. The excess androgens are produced mostly by the ovaries, but the adrenal glands can also be involved. Excess androgens are responsible for many PCOS symptoms including acne, unwanted hair, thinning hair, and irregular periods.

• Insulin. This hormone allows the body to absorb glucose (blood sugar) into the cells for energy. In PCOS, the body isn’t as responsive to insulin as it should be. This can lead to elevated blood glucose levels and cause the body to make more insulin. Having too much insulin can cause the body to make more androgens.

• Progesterone. In PCOS, a lack of progesterone contributes to irregular periods.

PCOS Symptoms

What are the First Signs of PCOS?

Polycystic ovary syndrome (PCOS) is a hormonal disorder common among women of reproductive age. PCOS symptoms may begin shortly after puberty, but can also develop during the later teen years and early adulthood. 

Because symptoms may be attributed to other causes or go unnoticed, PCOS may go undiagnosed for some time. Usually, a diagnosis of PCOS can be made when you experience two of these three signs:

Irregular periods. People with PCOS typically have irregular or missed periods as a result of not ovulating. Infrequent periods are a common sign of PCOS. For example, you might have fewer than nine periods a year with more than 35 days between periods. Other women suffer from abnormally heavy periods.

Polycystic ovaries. Although some people may develop cysts on their ovaries, many people do not. Your ovaries might be enlarged and contain follicles that surround the eggs. As a result, the ovaries might fail to function regularly.

Excess androgen. Elevated levels of male hormone may result in physical signs, such as excess facial and body hair (hirsutism), and occasionally severe acne and male-pattern baldness.

The exact cause of PCOS is unknown. Early diagnosis and treatment along with weight loss may reduce the risk of long-term complications such as type 2 diabetes and heart disease.

Other symptoms include:

• Weight gain. About half of people with PCOS will have weight gain and obesity that is difficult to manage.

• Fatigue. Many people with PCOS report increased fatigue and low energy. Related issues such as poor sleep may contribute to the feeling of fatigue.

• Unwanted hair growth (also known as hirsutism). Areas affected by excess hair growth may include the face, arms, back, chest, thumbs, toes, and abdomen. Hirsutism related to PCOS is due to hormonal changes in androgens.

• Thinning hair on the head. Hair loss related to PCOS may increase in middle age. 

• Infertility. PCOS is a leading cause of female infertility. However, not every woman with PCOS is the same. Although some people may need the assistance of fertility treatments, others are able to conceive naturally. 

• Acne. Hormonal changes related to androgens can lead to acne problems. Male hormones can make the skin oilier than usual and cause breakouts on areas like the face, chest, and upper back. 

• Darkening of skin. You may see thick, dark, velvety patches of skin under your arms or breasts, or on the back of your neck.

• Mood changes. Having PCOS can increase the likelihood of mood swings, depression, and anxiety.

• Pelvic pain. Pelvic pain may occur with periods, along with heavy bleeding. It may also occur when a woman isn’t bleeding.

• Headaches. Hormonal changes prompt headaches.

• Sleep problems. People with PCOS often report problems such as insomnia or poor sleep. There are many factors that can affect sleep, but PCOS has been linked to a sleep disorder called sleep apnea. With sleep apnea, a person will stop breathing for short periods of time during sleep. This means that even when you do sleep, you do not feel well-rested after you wake up. You could also have trouble falling asleep.

• Depression. Both hormonal changes and symptoms like unwanted hair growth can negatively affect your emotions. Many with PCOS end up experiencing depression and anxiety.

PCOS can disrupt a woman’s menstrual cycles and make it harder to get pregnant. Lifestyle interventions are the first treatments doctors recommend for PCOS, and they often work well. Weight loss can treat PCOS symptoms and improve the odds of getting pregnant. 

Medicines are an option if lifestyle changes don’t work. Birth control pills can restore more normal menstrual cycles. Metformin is often used to treat type 2 diabetes and may help some women with PCOS symptoms. Metformin improves insulin's ability to lower your blood sugar and can lower both insulin and androgen levels. 

After a few months of use, metformin may help restart ovulation, but it usually has little effect on acne and extra hair on the face or body. Both birth control pills and metformin are used by many to try to relieve PCOS symptoms.

Is there a cure for PCOS?

There is no cure yet, but there are many ways you can decrease or eliminate PCOS symptoms and feel better. Your doctor may offer different medicines that can treat symptoms such as irregular periods, acne, excess hair, and elevated blood sugar. Fertility treatments are available to help women get pregnant. Losing as little as 5% excess weight can help women ovulate more regularly and lessen other PCOS symptoms. The ideal way to do this is through nutrition and exercise.

You may feel that it is difficult to lose excess weight and keep it off, but it is important to continue the effort. Your efforts help reduce the risk of developing serious health complications that can impact women with PCOS much sooner than women without PCOS. The biggest health concerns are diabetes, heart disease, and stroke because PCOS is linked to having high blood pressure, pre-diabetes, and high cholesterol.

What is an Ovarian Cyst?

The definition of a cyst is a fluid-filled sac. Cysts can occur anywhere in the body. With PCOS, women can develop "cysts" due to eggs not being released over time. The follicles keep growing and form multiple "cysts." These may be described as appearing like a "string of pearls" in an ultrasound image.

Despite the name, women with PCOS don't need to have ovarian cysts. Women without PCOS may develop cysts related to other reasons. The most common type of ovarian cyst is called a functional cyst.

These cysts are described as "functional" because they often develop during the menstrual cycle. There are 2 types:

• Follicular Cysts: These usually go away on their own in 1 to 3 months. These form when an egg doesn't get released as expected, so the follicle keeps growing.

• Corpus Luteum Cysts: These also usually go away on their own. They form after the follicle ruptures and releases the egg (ovulation). The follicle reseals and fluid starts to build up within it. They can enlarge and cause pain, bleed, or twist the ovary. Fertility medicines used to promote ovulation (such as clomiphene) can increase the chances of developing these types of cysts.

Ovarian cysts can also be related to endometriosis, or formed from the outer surface of the ovary (cystadenomas), or formed with non-ovarian tissue (dermoid cysts).

Possible Symptoms

Most ovarian cysts are small and don't cause symptoms. Women may not even know they have one until they have a pelvic exam. If there are symptoms, they may include:

• Pressure

• Bloating

• Swelling

• Pain in the lower abdomen, on the side where the cyst is located

You may need surgery if you have pain, are past menopause, or if the cyst does not go away. If a cyst bursts or causes bleeding, you should get medical help right away.

Getting a Proper Diagnosis

Ovarian cysts can sometimes be detected during a pelvic examination, although an imaging test, usually a pelvic ultrasound, is necessary to confirm the diagnosis. 

• A CT scan or MRI is sometimes used to determine information about the cyst's size, location, and other important characteristics.

• One or more blood tests may be recommended if you are found to have an ovarian cyst. The blood test(s) can help to determine the nature of the cyst.

Ovarian Cyst Treatment

Ovarian cysts do not always require treatment and often resolve on their own within one to three months. In postmenopausal women, ovarian cysts are less likely to resolve.

If a cyst is large, causing pain, or appears suspicious for cancer, treatment could involve surgery to remove the cyst or the entire ovary.

Endometriosis

Ovarian cysts can also be related to endometriosis, or formed from the outer surface of the ovary (cystadenomas), or formed with non-ovarian tissue (dermoid cysts). Dermoid cysts come from cells present from birth. Because these cysts form from embryonic cells, they can contain tissue such as hair, skin, or teeth. They're rarely cancerous and do not usually cause symptoms.

Endometriosis occurs when pieces of the tissue that line the womb (endometrium) are found outside the womb in the fallopian tubes, ovaries, bladder, bowel, vagina, or rectum. Blood-filled cysts can sometimes form in this tissue.

When to Seek Medical Treatment

If you have been diagnosed with an ovarian cyst and you develop any of the following symptoms, seek medical help immediately:

• Pain with fever and vomiting

• Sudden, severe abdominal pain

• Faintness, dizziness, or weakness

• Rapid breathing

These symptoms could mean that your cyst has broken open, or ruptured. Sometimes, large ruptured cysts can cause heavy bleeding.

Prevention

Although there's no way to prevent ovarian cysts, regular pelvic exams help ensure that changes in your ovaries are diagnosed as early as possible. Be watchful of changes in your monthly cycle, including any unusual menstrual symptoms. Talk to your doctor about symptoms that concern you, especially ones that persist for more than a few menstrual cycles. If your PCOS cyst changes or becomes worrisome, please talk to your health care provider.

Sources: Office of Women's Health, Department of Health and Human Services. American College of Obstetrics and Gynecology.

What Causes PCOS?

The cause of PCOS is unknown. But most experts think that several factors, including genetics, could play a role. Women with PCOS are more likely to have a mother or sister with PCOS.

A main underlying problem with PCOS is a hormonal imbalance. In women with PCOS, the ovaries make more androgens than normal. Androgens are male hormones that females also make. High levels of these hormones affect the development and release of eggs during ovulation.

Researchers also think insulin may be linked to PCOS. Insulin is a hormone that controls the change of sugar, starches, and other food into energy for the body to use or store. Many women with PCOS have too much insulin in their bodies because they have problems using it. Excess insulin appears to increase the production of androgens. High androgen levels can lead to:

• Acne

• Excessive hair growth

• Weight gain

• Problems with ovulation

Getting Tested 

There is no single test to diagnose PCOS. Your doctor will take the following steps to find out if you have PCOS or if something else is causing your symptoms:

• Medical history. Your doctor will ask about your menstrual periods, weight changes, and other symptoms.

• Physical exam. The doctor will want to measure your blood pressure, body mass index (BMI), and waist size. He or she also will check the areas of increased hair growth. You should try to allow the natural hair to grow for a few days before the visit.

• Pelvic exam. Your doctor might want to check to see if your ovaries are enlarged or swollen by the increased number of small cysts.

• Blood tests. The androgen hormone and glucose (sugar) levels in your blood may be checked by your doctor.

• Vaginal ultrasound (sonogram). The doctor may perform a test that uses sound waves to take pictures of the pelvic area. It might be used to examine your ovaries for cysts and check the endometrium (en-do-MEE-tree-uhm) (lining of the womb). This lining may become thicker if your periods are not regular. 

Associated Health Risks

Women with PCOS have greater chances of developing several serious health conditions, including life-threatening diseases. Recent studies found that:

• More than 50 percent of women with PCOS will have diabetes or pre-diabetes (impaired glucose tolerance) before the age of 40.

• The risk of heart attack is 4 to 7 times higher in women with PCOS than women of the same age without PCOS.

• Women with PCOS are at greater risk of having high blood pressure.

• Women with PCOS have high levels of LDL (bad) cholesterol and low levels of HDL (good) cholesterol.

• PCOS sufferers can develop sleep apnea. This is when breathing stops for short periods of time during sleep.

Women with PCOS may also develop anxiety and depression. It is important to talk to your doctor about treatment for these mental health conditions.

There is also the risk for endometrial cancer. Irregular menstrual periods and the lack of ovulation cause women to produce the hormone estrogen, but not the hormone progesterone. Progesterone causes the endometrium (lining of the womb) to shed each month as a menstrual period. Without progesterone, the endometrium becomes thick, which can cause heavy or irregular bleeding. Over time, this can lead to endometrial hyperplasia, when the lining grows too much, and cancer. 

Many women with PCOS choose to be involved with polycystic ovary syndrome support groups to gain support and knowledge from other women going through similar symptoms and situations. Understanding what others other going through can be a great help in managing PCOS.

U.S. Department of Health and Human Services

Individualized PCOS Treatments

PCOS treatments focus on managing your individual concerns, such as infertility, hirsutism, acne, or obesity. PCOS treatments can include lifestyle changes like healthy eating and losing weight, or in some cases, medications can help. If a woman is not seeking to become pregnant, hormonal birth control (most often birth control pills) is a standard treatment. Here is a list of PCOS treatments available:

Birth Control Pills 

This is a common treatment to regulate periods and limit excess hair growth and acne by lowering androgen levels and protecting the endometrium (inner lining of the uterus) against abnormal cell growth. Regulating your hormones can lower your risk of endometrial cancer. 

Pills that contain estrogen and progestin decrease androgen production and regulate estrogen. Older types of birth control pills have a lower risk for dangerous blood clots and are preferable over new types of birth control pills.

Instead of pills, you might prefer to use a skin patch or vaginal ring that contains a combination of estrogen and progestin.

Metformin

Although metformin is not approved by the FDA for the treatment of PCOS, many doctors prescribe it for PCOS patients. Metformin is a medicine that makes the body more sensitive to insulin. This can help lower elevated blood glucose levels, insulin levels, and androgen levels. People who use metformin may lose some weight as well. Metformin can improve menstrual patterns, but it does not help as much for unwanted excess hair.

Many women who are diagnosed with PCOS are often automatically prescribed metformin. However, it's important to have a reason for taking metformin and not be on it just because of a diagnosis of PCOS. Discuss with your doctor the reason why you are taking metformin and whether it is providing a benefit to you.

Clomiphene (Clomid)

This is an oral medication that is the most common treatment used to induce ovulation. The use of both metformin and clomiphene has about the same fertility results as clomiphene used alone. A benefit is that metformin may help reduce the risk for ovarian hyperstimulation syndrome (OHSS) during assisted reproductive technology (ART) fertility treatments.

Letrozole (Femara)

Other treatments to stimulate ovulation include another oral medication called letrozole (Femara) and gonadotropins which are hormones that are given by injection. In vitro fertilization (IVF) and in vitro maturation (IVM) may be other fertility treatment options.

Lifestyle Changes

Your doctor may recommend weight loss through a low-calorie diet combined with moderate exercise activities. Lifestyle measures to achieve a weight loss of 5%-10% in overweight women can help regulate ovulation and periods. Although basic good nutrition is needed, it can be more challenging to lose weight and maintain weight loss with PCOS. Dr. Dunaif from Northwestern University is very encouraged that even “a little bit of weight reduction and exercise can improve insulin sensitivity.” 

Spironolactone

Drugs that curb androgen levels are another common treatment used for PCOS, although they are not officially FDA-approved for PCOS treatment. By lowering androgen levels, many patients have significant improvements in androgen-related symptoms such as excess hair. Spironolactone is the anti-androgen drug most often used.

To curb hirsutism (excess hair), Dr. Andrea Dunaif from Northwestern University typically starts patients with spironolactone. A 6-month trial is needed to show effects on unwanted hair, and she usually starts women at a higher dose. The unwanted hair doesn’t disappear but grows finer and lighter. 

Improvement of acne generally comes more quickly. Unfortunately, this drug is unlikely to help with androgen-related hair loss (aka androgenic alopecia) which is more difficult to treat.

Two important things to note are that the long-term safety effects of use are not known (but the drug has been in use for decades already) and spironolactone IS NOT SAFE to take during pregnancy, so it is commonly used in conjunction with birth control pills. 

This use of birth control pills also protects against abnormal growth of the lining of the uterus. Some women cannot take birth control pills, in which case it is important to use other means of birth control if you are sexually active while taking spironolactone.

Prescription Creams

Treatments targeting the skin or hair more directly are also available to help with hair problems. These include the prescription cream eflornithine hydrochloride (Vaniqa), acne products, and cosmetic treatments such as laser therapy and electrolysis.

Vitamins 

Vitamins, supplements, and other complementary treatments are popular among women with PCOS. Researchers are studying the effectiveness of such treatments. Popular options include cinnamon, Myo-inositol, vitamin D, B complex vitamins, and acupuncture. We hope to share and explain the evidence for these and other treatments as well as research findings as they develop.

Because the severity of PCOS can vary from person to person, treatment plans are highly individual. It’s extremely important to talk to your doctor about all potential treatments for PCOS and discuss the different options. 

Remember to consider factors such as cost, desire to have children in the future, regular periods versus irregular bleeding, and effectiveness at preventing pregnancy if you’re not trying to conceive right now.