Polycystic Ovary Syndrome (PCOS): A Guide for Parents

Polycystic Ovary Syndrome (PCOS) is the most common reproductive endocrine disease among individuals of childbearing age. Although this condition has not received much publicity, it impacts many young people born with a female reproductive system. In fact 5-10% of teens and young people have this diagnosis. The most common symptoms are irregular periods, weight gain, acne, and excess facial and body hair. The severity of the symptoms varies from girl to girl. Many teens are 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 your child.

What is PCOS?

Polycystic ovary syndrome (PCOS) is a hormone imbalance that can cause irregular periods, unwanted hair growth, and acne. The name “Poly”, meaning “many”, and “Cystic”, meaning “cysts”, refer 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 people 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.

What are the signs of PCOS?

Young people with PCOS commonly have one or more symptoms.

Some of the most common symptoms include:

• Irregular periods – periods that come every few months, not at all, or too frequently
• Hirsutism – extra hair on the face or other body parts
• 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 “good cholesterol”
• High blood pressure
• Pre-diabetes or in some cases, diabetes

How can I tell if my child has PCOS?

If your child has 2 or more of the above symptoms, they could have PCOS. There can be other reasons for these symptoms and therefore only a health care provider can tell for sure. If you or your child is distressed from the symptoms they are experiencing, you should make an appointment for them to be evaluated by their primary care provider. While they are waiting for their appointment, you can help them keep a log of their menstrual cycles and symptoms. They should bring the log with them when they meets with their provider. After an initial evaluation is completed, they may be referred to an adolescent gynecologist, adolescent medicine specialist, 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 then causes the ovaries to make extra amounts of testosterone.

For a more detailed explanation, take a look at the female reproductive anatomy image:

1. The pituitary (pi-tu-i-tary) gland in the brain makes the hormones luteinizing (lu-tin-iz-ing) hormone (LH) and follicle (fall-i-call) stimulating hormone (FSH).
2. After getting the signal from the hormones LH and FSH, the ovaries make estrogen (es-tro-gen) and progesterone (pro-ges-ter-own), the female sex hormones.
3. All normal ovaries also make a little bit of the androgen testosterone (an-dro-gen tes-tos-ter-own), a male sex hormone. The pancreas (pang-cree-us) is an organ that makes the hormone insulin. High levels of insulin can also cause the ovaries to make more of the hormone testosterone.

Why does my child have irregular menstrual cycles?

Having PCOS means that your child’s ovaries are not getting the right (hormonal) signals from their pituitary gland. Without these signals they will not ovulate regularly. Their periods may be irregular or absent.

1. The menstrual cycle starts when the brain sends LH and FSH to the ovaries. A big 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 tells the lining of the uterus to thicken.
3. If the egg isn’t fertilized, the lining of the uterus is shed and the menstrual period will start.
4. After the menstrual period, the cycle begins all over again.

The diagrams show a normal menstrual cycle and a PCOS cycle. The PCOS cycle stops just before ovulation. As a result, people with PCOS may ovulate occasionally or not at all so periods may be too close together or more usually, too far apart. Some people may not get a period at all.

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 surge. Without this LH surge, ovulation does not occur, and periods are irregular.

What types of tests will my child need to have?

It’s likely that your child’s health care provider will ask them a lot of questions about their menstrual cycle and their general health and then do a complete physical examination. They most likely will need to have a blood test to check their hormone levels, and they may also have their blood sugar and cholesterol tested. An ultrasound test to check their uterus and ovaries may also be ordered.

Does PCOS mean that my daughter has cysts on her ovaries?

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

Why does my child have acne and/or extra hair on her body?

Acne and extra hair on the face and body can happen if your child’s body is making too much testosterone. Everyone 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 people 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 that my child has?

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.

Will PCOS affect my child’s fertility?

Women with PCOS have a normal uterus and healthy eggs. Many people with PCOS have trouble getting pregnant (because they don’t ovulate regularly), but some women have no trouble at all. There are new options available including medications that aim to lower insulin levels, which stimulate ovulation. People with PCOS should talk to their primary care provider even if they are not interested in becoming pregnant right away. There are several medical therapies that are available to enhance fertility. Your daughter should be reassured by their health care provider and you that good nutrition, weight control if they are overweight, and reducing insulin and glucose levels may induce normal ovulation and, in turn, improve their fertility outcome. Medical treatment continues to get better.

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

While there is no miracle-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 people are  overweight or obese. Studies have shown that losing even 5% of body weight in overweight and obese people with PCOS can improve some of the symptoms associated with this disorder. Although there are some young people 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 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 person is not sexually active, their health care provider may prescribe birth control pills because they contain the hormones that their body needs to treat their PCOS. The birth control pill may be prescribed continuously (one pill is taken every day without any breaks) or cyclically (1 hormone pill is taken for 21 days then a placebo or “remember” pill with no hormones is taken for 7 days).

The birth control pill works by:

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

Are there any other medications used to treat PCOS?

Another medicine which helps the body lower the insulin level is called Metformin. It is particularly helpful in girls who have high levels of insulin or have pre-diabetes or diabetes. Blood tests to check kidney and liver function are necessary before taking this medication. Since this medicine isn’t appropriate for everyone, it is important to talk with your child’s health care provider to see whether this medicine is right for them. Because there is a possibility that ovulation can occur while taking this medication, your child will be counseled on the importance of using birth control if they is sexually active. Additionally, if your child is prescribed Metformin, they will be advised to avoid alcohol. Some young people are treated with both Metformin and birth control pills at the same time.

What about treating excess hair growth?

Treatment is individually based. Options may include bleaching, waxing, depilatories, Spironolactone (spi-ro-no-lac-tone), electrolysis, and laser treatment. Spironolactone is a prescription medicine that can decrease hair growth and make hair lighter and finer. However, it can take up to 6-8 months to see an improvement.

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 improve greatly.

What about weight loss plans?

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

If your child has PCOS, encourage her to:

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

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

When a teen or a young person is first diagnosed with PCOS, they often feels confused. It is a difficult diagnosis to understand and the symptoms can be 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 person may feel relieved that at last there is an explanation and treatment for the problems they have been suffering with. Having a diagnosis without an easy cure can be difficult. However, it is important for people with PCOS to know they are not alone. Finding a doctor who knows a lot about PCOS and who 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 people 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 and confidential monthly (internet) chat for teens and young people with PCOS that is moderated by a nurse and registered dietitian.

Is there anything else I should know to help my child?

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

Supporting your child in their efforts to make even small changes in nutrition and physical exercise can help them to take charge of her health. Understanding and learning more about PCOS will help you to be supportive to your child’s emotional needs. Resources such as educational websites and monitored internet chats may provide additional support.