Polycystic Ovary Syndrome (PCOS) for School Nurses and Clinicians

Polycystic Ovary Syndrome (PCOS) is the most common reproductive endocrine disease among women of childbearing age. Although this condition has not received much publicity, it impacts many young women. In fact 5-10% of teens and young women have this diagnosis. The most common symptoms are irregular periods, weight gain, acne, and excess facial and body hair. The severity of the symptoms as well as the prognosis for lifelong implications such as type 2 diabetes, infertility, and cardiovascular disease varies among teen girls and young women. Most young women feel distressed with how the symptoms impact their life and self-esteem. Having an understanding of this disease, the etiology, current trends in medical treatment, and the important role of good nutrition and exercise will help you to support teen girls with PCOS.

What is PCOS?

Polycystic ovary syndrome (PCOS) is a hormone imbalance that can cause irregular periods, excess hair (hirsutism), and acne. The name “Poly”, meaning “many”, and “Cystic”, meaning “cysts”, refers to the fact that those with PCOS may have enlarged ovaries that contain many very small cysts. These small cysts also called follicles develop in the ovary but the eggs are only rarely released. The outer wall of the ovaries thickens giving the ovary a polycystic appearance. These cysts are not cancerous and do not need to be surgically removed. It is not uncommon for girls with PCOS to have normal appearing ovaries but still have an imbalance in their hormone levels. Generally, symptoms of PCOS begin during the teenage years around the start of menstruation and can be mild or severe. The extent of symptoms and their severity varies significantly among young women. What most health care providers will agree on is that young women with this disorder have irregular menstrual cycles that are abnormal for their age and that continue for a minimum of one year and elevated serum testosterone levels in the absence of other possible medical conditions.

What are the signs of PCOS?

Young women with PCOS commonly have one or more signs. Some of the most common signs include:

• Irregular periods—periods that come every few months, not at all, or too frequently
• Hirsutism—extra hair on the face, chest, back or other parts of the body
• Acne
• Weight gain and/or trouble losing weight, and in some cases, obesity
• Patches of dark skin on the back of the neck and other areas, called acanthosis nigricans
• Infertility or impaired fertility due to irregular periods or lack of ovulation

Other less common signs/symptoms may include:

• Hair thinning (on the top of the head)
• Skin tags under the armpits or neck area
• High total cholesterol and/or low HDL
• High blood pressure
• Pre-diabetes or in some cases, diabetes

Can you tell if a young woman has PCOS?

If a young woman has irregular menses and symptoms of hyperandrogenism (excess hair, acne, and hair thinning) sometimes referred to as male patterned baldness, documented by elevated serum testosterone, she could have PCOS. There can be other reasons for these symptoms including idiopathic hirsutism. If the young woman is distressed about the symptoms she is experiencing, you should suggest that she see her primary care provider. While she is waiting for her appointment, you can advise her to keep a log of her menstrual cycles and symptoms. She should bring the log with her when she meets with her provider. After an initial evaluation is completed, she may be referred to an adolescent medicine specialist, an adolescent gynecologist, or an endocrinologist for further testing.

What causes PCOS?

PCOS is caused by an imbalance in the hormones secreted by the pituitary gland that in turn affects the ovaries. Many girls with PCOS also have higher than normal levels of insulin from the pancreas. PCOS usually happens when the luteinizing hormone (LH) levels or the insulin levels are too high, which results in extra testosterone production by the ovary.

For a more detailed explanation, take a look at the figure:

1. The pituitary gland in the brain makes the hormones luteinizing hormone (LH) and follicle stimulating hormone (FSH).
2. After getting the signal from the hormones LH and FSH, the ovaries make estrogen and progesterone, the female sex hormones.
3. All normal ovaries also make a little bit of the androgen testosterone. High levels of insulin can also cause the ovaries to make more testosterone.

Why do young women with PCOS have irregular menstrual cycles?

Young women diagnosed with PCOS do not get the correct hormonal signals from their pituitary gland. Without these signals they will not ovulate regularly and their periods may be irregular or absent.

Normal Menstrual Cycle

1. The menstrual cycle starts when the brain sends LH and FSH to the ovaries. A surge of LH is the signal that tells the ovaries to ovulate, or release a ripe egg.
2. The egg travels down the fallopian tube and into the uterus. Progesterone from the ovary signals the lining of the uterus to thicken. If the egg isn’t fertilized, the lining of the uterus is shed and the menstrual period will start.
3. After the menstrual period, the cycle begins again.

The regular menstrual cycle diagram shows a normal menstrual cycle. The PCOS cycle diagram shows a PCOS cycle which stops just before ovulation. As a result, girls with PCOS may ovulate occasionally or not at all so periods may be too close together or more usually, too far apart. Some girls may not get a period at all.

PCOS Menstrual Cycle

1. With PCOS, LH levels are often high when the menstrual cycle starts. The levels of LH are also higher than FSH levels.
2. Because the LH levels are already quite high, there is no LH surge. Without this LH surge, ovulation does not occur and periods are irregular.

When is an evaluation for PCOS warranted?

An evaluation for PCOS is suggested for teen girls who have a least one or more of the following symptoms:

• An unusual amount of hirsutism (ex. excessive facial hair).
• Severe acne that doesn’t get better with topical treatments.
• Too few or too many periods a year
• Obesity or hirsutism with irregular menses

What types of tests are done to diagnose PCOS?

Generally a young woman’s health care provider will ask her a lot of questions about her menstrual cycle and her general health and then do a complete physical examination. She most likely will need to have a blood test to check: her hormone levels, blood sugar, and cholesterol. An ultrasound to check the uterus and ovaries may also be obtained.

Do young women with PCOS have cysts on their ovaries?

The term “polycystic ovaries” means that there are many tiny cysts, or bumps inside of the ovaries. Some young women with PCOS have these cysts; others only have a few. Even if a young woman has many of these tiny cysts, they are not harmful and do not need to be surgically removed.

Why do young women with PCOS get acne and/or extra hair on their body?

Acne and extra hair on the face and body can happen if a young woman’s body is making too much testosterone. All women make testosterone, but with PCOS, the ovaries make more testosterone than they are supposed to. Skin cells and hair follicles are extremely sensitive to the slight increases in testosterone found in young women with PCOS, which contributes to excess hair growth in areas such as the upper lip, chin, sideburn area, chest, and stomach.

What causes the patches of dark skin in young women with PCOS?

Many adolescents with PCOS have higher levels of the hormone, insulin, in their blood. Higher levels of insulin can sometimes cause patches of darkened skin on the back of the neck, under the arms, and in the groin area. This condition is called acanthosis nigricans.

Does PCOS affect fertility?

Women with PCOS have a normal uterus and healthy eggs. Many women with PCOS have trouble getting pregnant, but some women have no trouble at all. There are many options available including medications that aim to lower insulin levels, which stimulate ovulation. Girls with PCOS should talk to their primary care provider (PCP) even if they are not interested in becoming pregnant right away. Their PCP will explain the current medical therapies that are available. Reassure the young woman that good nutrition, weight control (for girls who are overweight), and reducing insulin and glucose levels may induce normal ovulation, improving her fertility outcome. Remind her that medical treatment is constantly moving forward.

Is there anything girls with PCOS can personally do to help themselves?

While there is no cure for PCOS, it can be treated. A healthy lifestyle that includes nutritious foods and daily exercise can have a profound and positive effect on the endocrine system, particularly in cases when a young woman is overweight or obese. Studies have shown that losing even a minimum of 5% of body weight in overweight and obese women with PCOS can eliminate some of the symptoms associated with this disorder. Although there are some young women with PCOS who are either underweight or average weight, some find that they gain weight easily, so for them daily exercise is a way to be proactive about their health.

What are the treatment options for girls with PCOS?

The most common form of treatment for PCOS is the birth control pill. However, other kinds of hormonal therapy may include the “vaginal ring” and “the patch”. Even if a young woman is not sexually active, her health care provider may prescribe birth control pills because they contain the hormones that her body needs to treat her PCOS. The birth control pill may be prescribed continuously or cyclically.

The birth control pill works by:

• Correcting the hormone imbalance
• Lowering the level of testosterone, which will improve acne and lessen hair growth
• Regulating her menstrual periods
• Lowering the risk of endometrial cancer (which is slightly higher in young women who don’t ovulate regularly)
• Preventing an unplanned pregnancy, if she is sexually active

Are there any other medications used to treat PCOS?

Yes. Metformin is a medication that helps to lower insulin levels. It is particularly helpful in girls who have high levels of insulin or have pre-diabetes or diabetes. It is necessary for a young woman to have her kidney and liver function checked before taking this medication. Since this medicine isn’t appropriate for everyone, it’s important to encourage a young woman to ask her health care provider whether this medicine is right for her. Because a young woman may ovulate while on this medication, she will also need to use birth control if she is sexually active. Alcohol should be avoided when taking Metformin. Some young women may be treated with both Metformin and birth control pills at the same time.

What about treating excess hair growth?

Treatment is a personal choice. Hair removal options may include bleaching, tweezing, waxing, depilatories, spironolactone, (a prescription anti-hair growth medication), electrolysis, and laser treatment. A young woman may require help finding a local salon that provides high quality, cost-effective services that can help her choose the right option for her.

Are there any special treatments for acne associated with PCOS?

There are various ways to treat acne in general, including the birth control pill, topical creams, oral antibiotics, and other medications. These treatments are not necessarily specific to PCOS. Studies have shown that when insulin and glucose levels are controlled and ovulation resumes, acne and other skin conditions may often improve.

What about weight loss plans?

If a person with PCOS is overweight, losing weight may reduce some of the symptoms. It is often beneficial for a young woman with PCOS to talk to her health care provider or nutritionist about healthy ways to lose weight and increase her exercise. Following a nutrition plan that helps manage insulin levels may help girls with PCOS manage their weight too. It also keeps the heart healthy and lowers a young woman’s risk of developing diabetes.

Encourage young women with PCOS to:

• Choose nutritious, high-fiber and complex carbohydrates instead of sugary or simple carbohydrates
• Balance carbohydrates with protein and healthy fats
• Eat small meals and snacks throughout the day instead of large meals
• Exercise regularly to help manage weight and insulin levels

Is it normal for a young woman with PCOS to feel worried about her health?

When a young woman is initially diagnosed with PCOS, she often feels confused. It is a difficult diagnosis to comprehend and the symptoms are often distressing. Girls may also feel frustrated and/or sad if they are having a hard time losing weight, dealing with acne, excess body hair, and menstrual irregularities. When a health care provider takes the time to explain what PCOS is and offers treatment options, a young woman may feel relieved that at last there is an explanation and treatment for the problems she has been suffering with. Having a diagnosis without an easy cure can be difficult. However, it is important for girls with PCOS to know they are not alone. Finding a health care provider who knows a lot about PCOS and whom they feel comfortable talking to is very important. Keeping a positive attitude and working on a healthy lifestyle even when results seem to take a long time is very important too! Many girls with PCOS tell us that talking with a counselor about their concerns can be very helpful. The Center for Young Women’s Health offers a free monthly online chat for girls and young women diagnosed with PCOS. To learn more about it, visit our chat page.

Is there anything else I should know?

It is important that girls with PCOS follow-up regularly with their doctor and take their medication. The prescribed treatment will regulate her periods and lessen her chance of getting diabetes and other problems. Because young women with PCOS have a slightly higher chance of developing diabetes, her doctor may suggest that she have her blood sugar tested once a year or have a glucose challenge test every few years. Girls who are on hormonal pills to treat PCOS and who smoke should receive counseling on smoking cessation.