What Is It?
Polycystic ovary syndrome (PCOS) is generally characterized by the presence of polycystic ovaries, hyperandrogenism (the condition caused by excess male hormones or male-like traits) and irregular ovulation and menstruation.
Polycystic ovary syndrome (PCOS) is the most common hormone abnormality of reproductive-age women, the most common cause of infertility in women and an important harbinger of metabolic disorders such as diabetes and heart disease. It affects an estimated 5 percent to 10 percent of females and is associated with an increased risk of diabetes and obesity, and possibly an increased risk of stroke and cardiovascular disease. The syndrome is generally characterized by the presence of polycystic ovaries, hyperandrogenism (the condition caused by excess male hormones or male-like traits), and irregular ovulation and menstruation. The symptoms of PCOS can vary.
The syndrome was previously called Stein-Leventhal Syndrome after the physicians who first characterized it in the 1930s. Although its cause remains unknown, it usually presents in young women or adolescents, and the main symptoms are irregular or absent periods and excess unwanted facial and/or body hair growth (hirsutism). As the term "polycystic ovary syndrome" suggests, the disorder is often accompanied by enlarged ovaries containing multiple small painless benign "cysts" or tiny follicles about 1/8 to 1/4 inch in diameter.
During a normal menstrual cycle in which a woman ovulates (called an ovulatory cycle), a small number of follicles begin to grow. One becomes the biggest, or dominant, follicle. This dominant follicle then ruptures and releases the egg.
In women with PCOS, the hypothalamic-pituitary (in the brain) functions abnormally, and high levels of hormones called androgens (commonly known as "male hormones") disturb the ovulatory process, halting the normal development of the sacs, called follicles, that contain each individual egg (or ova). These halted or arrested follicles––whose appearance (via an ultrasound) is sometimes likened to a "string of pearls" on the outside border of the ovary––form the "cysts" observed in PCOS. These cysts are not tumors and do not require removal.
Treatment of PCOS, instead, is through the use of lifestyle modifications and medication to treat symptoms.
Many, but not all, women with PCOS will have the polycystic-looking ovaries (which are often two to five times larger than normal ovaries) for which the syndrome is named, but it is possible to be diagnosed with the syndrome without having this sign. And not all women with polycystic-appearing ovaries will have PCOS.
Many women with PCOS experience excess insulin production from the pancreas, which can result from insulin resistance, meaning that their cells don't respond well to insulin, so the insulin has difficulty working in their bodies. Hence, higher levels of insulin are needed to maintain normal glucose and lipid levels. Insulin, a hormone produced by the pancreas, regulates a range of functions, including controlling blood sugar (glucose) and fats (lipids).
Insulin resistance can lead to hyperinsulinism or hyperinsulinemia. It is also a precursor to type 2 diabetes. Furthermore, the high levels of insulin help stimulate the ovaries to overproduce androgens, which may be the cause of PCOS in some women.
In addition to stimulating the ovaries to overproduce androgens, high levels of insulin can cause darkening of the skin around the neck and other crease areas, a condition called acanthosis nigricans, often accompanied by skin tags in these areas.
If the pancreas can't produce enough insulin to compensate for the insulin resistance, glucose builds up in the blood, eventually leading to type 2 diabetes.
Up to 75 percent of women with PCOS have insulin resistance and about 10 percent develop type 2 diabetes by age 40. Insulin resistance and an increased risk of diabetes are major problems for obese women with PCOS, but they also cause problems for normal weight women with PCOS. For obese women with PCOS, treatment plans should incorporate diet and exercise.
Obesity in women with PCOS tends to be centered on the abdomen, a fat distribution pattern linked to increased risk of diabetes, heart disease and high blood pressure.
Up to 50 percent of women with PCOS also have sleep apnea, a condition that causes brief spells where breathing stops during sleep. Sleep apnea can worsen the degree of insulin resistance.
The most visible symptoms of PCOS stem from excessive levels of androgens, such as testosterone, produced by the ovaries and the adrenal glands. Androgens often are called "male hormones," even though they are found in both men and women. They are usually present at higher concentrations in men and are an important factor in determining male traits and reproductive activity. Androgens, or androgen precursors, include testosterone, dihydrotestosterone (DHT), androstenedione, dehydroepiandrosterone (DHEA) or DHEA sulfate (DHEA-S).
Excessive levels of these hormones, a condition called hyperandrogenemia, or their exaggerated action, called hyperandrogenism can lead to some of the most common symptoms of PCOS in women, including:
But such symptoms alone are not enough to support a diagnosis of PCOS. They may only indicate the presence of hyperandrogenism, which can result from several conditions.
Women with PCOS ovulate irregularly and/or infrequently and often have irregular menstrual periods. Inducing a period is important because the hormone progesterone promotes the normal shedding of the uterine lining (i.e., menstruation), preventing the buildup of the uterine lining, and reducing the risk of endometrial (uterine) cancer. However, progesterone is secreted by the ovaries only after ovulation occurs, so progesterone may need to be administrated to women with PCOS either alone regularly or as part of a combination hormonal contraceptive.
PCOS often is a cause of infertility due to a failure to ovulate.
Women with PCOS are more likely to be overweight or obese, although the exact relationship of PCOS and body weight is unknown. Excess weight worsens PCOS, but researchers do not yet know whether or not having PCOS makes patients more prone to obesity.
It is not surprising that women with PCOS often suffer from poor self image and may experience depression or anxiety.
While the biochemical imbalances that cause symptoms are becoming better understood, the trigger or triggers for PCOS remain unknown. Most believe PCOS results from genetic defects, often in combination with environmental factors. Genetic defects may result in abnormal function of the hormones from the pituitary that regulate ovulation (LH and FSH), in abnormal development of the follicle, in increased production of male hormones (androgens), and in insulin resistance and excessive production of insulin. All these prevent the ovaries from functioning normally.
Because PCOS is mostly a genetic disorder, the risk of PCOS in family members is high. For example, an estimated 30 percent of mothers, and 50 percent of sisters and daughters of people with PCOS can be affected.
To date there is no cure for PCOS. Health care professionals can usually address the most bothersome symptoms. Because of the complexity of the hormonal interactions, you may need to see an endocrinologist. You may also need to visit a reproductive endocrinologist, especially if you are infertile and trying to conceive. Not all physicians have experience treating PCOS, so check with the doctor's office to see if that doctor cares for many people with PCOS.
Diagnosis begins with an inventory of signs and symptoms, the most common of which are:
Women with PCOS may have varying combinations of these and other signs and symptoms, but three important features of the disorder include the following:
Expert groups have determined that a woman must exhibit at least two of these three symptoms to be diagnosed with PCOS.
The diagnostic process should include a thorough physical examination and history to check for signs and symptoms of other disorders that can have similar signs and symptoms, such as hypothyroidism, Cushing's syndrome (a hormonal disorder in which the adrenal glands malfunction), adrenal hyperplasia (a genetic condition that results in male hormone excess produced by the adrenal glands), and androgen-secreting tumors (of the ovary, adrenal gland, etc.).
While there is no single test for PCOS, a health care professional may measure blood levels of the following:
These tests should be interpreted carefully by a specialist. The best time to be tested is in the morning just after your menstrual period begins (you may need medication to induce menstruation). Birth control pills might make the tests difficult to interpret because they change the hormonal balance and may mask any abnormalities that may exist in male hormones.
The ultrasound test usually involves insertion of a probe into the vagina, although a transabdominal ultrasound, in which the ultrasound is passed over your abdomen, can be performed, particularly in women who have never been sexually active.
PCOS is also associated with an increased risk of diabetes and obesity, and as a result, an increased risk of cardiovascular disease. If you have PCOS, you should be tested and treated for insulin resistance, type 2 diabetes, high blood pressure and elevated blood lipids (cholesterol and triglycerides). Women with PCOS who become pregnant should be advised that they are at increased risk of developing gestational diabetes.
Treatment of polycystic ovarian syndrome (PCOS) centers on lifestyle modifications and medication. Surgical procedures to destroy or shrink the ovarian cysts are less likely to be performed today given the success of hormonal treatments. However, if you fail to ovulate with conventional treatment (the fertility drug clomiphene citrate (Clomid)) and can't, for whatever reason, proceed to gonadotropin shots or in vitro fertilization (IVF), your doctor may recommend an outpatient surgery called laparoscopic ovarian drilling.
Because the primary cause of PCOS is unknown, treatment is directed at the primary symptoms of the disorder, which include excess hair growth, irregular periods and infertility.
Excess hair growth
For some women, the most bothersome symptom is hirsutism (excess facial and/or body hair, often dark and coarse). This symptom, as well as acne and oily skin, stem from the overproduction of androgens. For women with these symptoms, an anti-androgen medication like spironolactone, finasteride or flutamide may be prescribed.
Spironolactone is a diuretic that works by blocking the action of testosterone at the hair follicle. Side effects are generally mild and may include heartburn and upset stomach, sun sensitivity, increased urination and lower blood pressure causing weakness or faintness. At high doses, it can clear oily skin and make unwanted hair finer.
Finastride, which is used to treat enlarged prostate and baldness in men, may also be useful in women with hyperandrogenism symptoms, including hirsutism. It may also help treat hair loss on the scalp associated with PCOS. Finasteride, however, can cause birth defects in a male fetus (pregnant women should not even handle the drug in crushed tablet form). And many insurance companies won't cover the drug for cosmetic reasons.
Flutamide, a drug used to treat prostate cancer in men, is also useful for the treatment of signs and symptoms due to hyperandrogenism in women with PCOS, although it carries the rare risk of liver toxicity.
If you are trying to conceive, you cannot take an anti-androgen medication because it could cross the placenta and cause defects in a male fetus. Usually, anti-androgen medications are used in combination with birth control pills, which not only prevent unplanned pregnancies, but also improve the success of these medications on excess hair growth.
None of these drugs is FDA-approved for the treatment of PCOS, but clinical experience and scientific study has shown that they can be effective.
Electrolysis, and possibly lasers, can remove any remaining hairs permanently.
Eflornithine hydrochloride cream (Vaniqa) may also help slow the hair growth on the face. It works well in about one-third to one-half of women using it. The medication is applied to the face twice a day like a moisturizer. It works by blocking a key enzyme that makes hair grow. Noticeable results take about six to eight weeks. It must be used regularly or the hair will grow back after about eight weeks.
Bear in mind that it can take up to nine months to see effects on hair growth and a year or longer to achieve peak effect. The hair will still be there, but it will generally grow more slowly and be lighter and finer.
Irregular periods
If irregular and/or infrequent menstruation is a problem, birth control pills that contain estrogen and progestin can generally regulate your cycles. Restoring regular periods is essential since it ensures that the lining of the uterus is shed, protecting against uterine cancer. Birth control pills also reduce the production of androgens by the ovaries.
Rare side effects of birth control pills include migraines, nausea and headaches, and, rarely blood clots (especially among smokers and women with persistent high blood pressure), gallbladder disease and high blood pressure.
If you don't want to take a daily medication, talk to your doctor about a course of progestogen (progesterone-like drugs) several times a year to start your periods. It is important to have at least six to eight periods a year to promote shedding of the endometrial lining; buildup can lead to cancer. However, periodic progesterone alone does not help reduce unwanted hair growth as birth control pills do.
Another drug that helps regulate periods in some women with PCOS, although less effectively than birth control pills, is the insulin-sensitizing drug metformin (Glucophage). Metformin regulates blood glucose (sugar) levels by reducing the amount of glucose the liver produces, reducing the amount of glucose absorbed from food and reducing the levels of insulin in the blood by helping the insulin that your body produces work better to reduce the amount of glucose already in your blood.
The drug is not FDA-approved for PCOS, but research done so far shows it helps modestly improve ovulation and may reduce androgen levels. If you are among the 10 percent or so of women with PCOS who already have type 2 diabetes, metformin is also a good therapeutic option. Experts aren't sure, however, if metformin is as effective at preventing endometrial cancer in women with PCOS as birth control pills or progesterone. In addition, some experts do not recommend metformin for women with PCOS who have excess hair growth (hirsutism).
If you are prescribed metformin, be sure to inform your health care professional of all other medications you are taking, including over-the-counter medicines, to prevent drug interactions.
Infertility
Infertility often is a consequence of PCOS. If you are overweight or obese, the first line of treatment is weight loss; even losing a little bit of weight may stimulate ovulation. Weight loss can also boost the effectiveness of other infertility treatments.
The second line of treatment is the ovulation-stimulating drug clomiphene citrate, which is used to treat infertile women with ovulation problems. It works by helping the pituitary gland send hormonal signals to stimulate the development of more eggs in the ovaries. Clomiphene stimulates ovulation in about 80 percent of women with PCOS, and about half of these women become pregnant.
Another option for women with PCOS who do not ovulate is letrozole, a medication FDA-approved for breast cancer treatment. Letrozole is sometimes used off label to induce ovulation. Some studies have shown live birth rates in obese women with PCOS who take letrozole are higher than in obese women with PCOS who take clomiphene.
If clomiphene doesn't work, your doctor may suggest using metformin in combination with clomiphene or gonadotropins injections.
Treatment with gonadotropins—purified solutions of follicle-stimulating hormone (FSH) with or without luteinizing hormone (LH)—may be administered by injection. Because many women with PCOS have elevated LH, some doctors may recommend treatment with FSH alone.
But treatment with gonadotropins, while effective, is more challenging to manage and more expensive. Some women also have some trouble self-administering the injections. Risks include multiple births and ovarian hyperstimulation syndrome. In many patients mild signs and symptoms of hyperstimulation may occur, including bloating, fluid retention, weight gain and a tender stomach. In more severe cases fluid from the bloodstream leaks into the abdominal cavity, causing it to swell, and making the blood thicker. This may lead to breathing difficulties, temporary kidney failure and blood clots. Thus, gonadotropins should only be prescribed by clinicians specifically trained in their use.
Another option for women who fail to ovulate with clomiphene or metformin therapy, or who are unwilling or unable to use gonadotropins (or can't afford to use them), is a surgical procedure known as laparoscopic ovarian drilling.
During this procedure, a surgeon makes a small incision in your abdomen and inserts a laparoscope (a telescope-like instrument attached to a tiny camera). The surgeon then makes other small incisions and inserts surgical equipment that uses electrical or laser energy to burn small holes in the enlarged follicles on the surface of your ovaries. The goal of the procedure is to stimulate ovulation by reducing LH and androgen levels.
Additionally, many women who failed to ovulate with clomiphene or metformin therapy are able to ovulate with these medications after ovarian drilling. The success rates for laparoscopic ovarian drilling appear to be better for patients at or near their ideal body weight, as opposed to those who are obese. Interestingly, women in these studies who are smokers rarely improved with the drilling procedure. Side effects are rare, primarily adhesions, although laparoscopic ovarian surgery requires general anesthesia, which carries its own risks.
Other Approaches
Long-term, nonmedical treatment is geared toward modifying your risk factors for health problems often associated with PCOS, including diabetes, uncontrollable weight gain and heart disease. A healthy, low-sugar, low-starch diet and an exercise program to stabilize your weight can reduce the risk of these conditions.
You can manage some problems associated with PCOS without medication. Excess hair can be removed by shaving, tweezing, waxing or using depilatory creams, or by electrolysis or laser techniques administered by a trained professional. Since lasers work by attacking a skin pigment, they should be used with caution by darker-skinned women.
If you are overweight and have PCOS, you need to lose weight. Losing even just a small amount of weight can lower androgen and insulin levels, reducing your risk of insulin resistance and diabetes. Some obese women with PCOS find losing just 5 to 10 percent of their body weight helps their periods become more regular.
Exercise alone, even without weight loss, is also beneficial since it helps improve insulin sensitivity.
It seems that some PCOS symptoms improve as women near menopause, but some of the complications may persist into or beyond menopause, particularly male pattern baldness or thinning hair, which sometimes gets worse after menopause. The risk for heart attack, stroke and diabetes also increases in menopause in women with PCOS. In cases where PCOS symptoms persist, the best recommendation is to monitor cholesterol, triglycerides and blood pressure, as well as glucose and insulin levels.
There is no known way to prevent polycystic ovary syndrome (PCOS). Researchers are still working to understand the underlying causes. However, if you have PCOS there is a high likelihood that your daughter or sister will have the disorder. There are steps you can take to prevent some of the worst consequences of the disorder––diabetes, uterine cancer, high blood pressure and high levels of blood lipids (a risk factor for heart disease).
If you do not menstruate, inducing menstruation with a progesterone-like agent should be a top priority. During menstruation, the endometrial lining is shed in response to withdrawal of the progesterone hormone. Without this shedding, your risk of uterine cancer rises significantly. Birth control pills, which combine estrogen and progestin, can restore regular periods. If you don't want to take a daily medication, a course of progesterone, such as medroxyprogesterone acetate, micronized progesterone or norethindrone acetate, taken for 10 to 14 days every one to three months, may help.
If you are overweight, losing weight is a big step toward lowering your risk for diabetes and heart disease. Losing weight can help restore regular periods and improve other hormonal imbalances, but weight loss is often an incomplete solution to PCOS.
Review the following Questions to Ask about polycystic ovary syndrome (PCOS) so you're prepared to discuss this important health issue with your health care professional.
PCOS is a hormonal disorder linked to hyperandrogenism (a condition caused by excess androgens such as testosterone) and irregular ovulation. Visible signs and symptoms may include hirsutism (excess body and/or facial hair); irregular or infrequent periods;; acne and/or oily skin (particularly severe acne in teenagers or acne that persists into adulthood); infertility; insulin resistance (often resulting in impaired glucose tolerance, a frequent precursor to type 2 diabetes); hair loss or balding; darkening of the skin, usually on the neck; and skin tags in the armpit or on the neck. Women with PCOS may also have, as the name suggests, ovarian cysts, which are benign, small and numerous.
A health care professional will take a thorough history and do a complete physical examination and may do a series of blood tests to check for hormone imbalances characteristic of PCOS. Ultrasound imaging of the ovaries may also be performed. Most women with PCOS will have irregular or absent menstrual periods.
Most cases require the expertise of an endocrinologist or reproductive endocrinologist.
Certainly, if you have insulin resistance or type 2 diabetes an insulin sensitizer would be an acceptable approach to treatment. In women with irregular periods, the first line of treatment is usually hormonal birth control, such as birth control pills or the birth control patch. In women who cannot take hormonal birth control, one alternative is to take the insulin-sensitizing drug metformin. A progestin (for example oral micronized progesterone or medroxyprogesterone acetate) is usually prescribed together with metformin for six months or until menstrual cycles become regular.
The first line of treatment is usually weight loss in women with PCOS who are overweight or obese. If a woman is unable to lose weight or if modest weight loss does not restore ovulation, an ovulation-stimulating drug such as clomiphene citrate is prescribed. Potential side effects include hot flashes, ovarian swelling that goes down with the onset of your period and an increased possibility of twins. If clomiphene alone doesn't work, the next step may be a combination of clomiphene and metformin, injectable gonadotropins or laparoscopic ovarian drilling.
Birth control pills are frequently prescribed to return your menstrual cycles to normal, but you can instead take a course of progesterone, such as medroxyprogesterone acetate, micronized progesterone or norethindrone acetate periodically. You take it for seven to 14 days every one to three months. Progesterone-induced menstruation is essential, because it sloughs off the endometrial lining, helping prevent uterine cancer. Cyclic progestin does not suppress male hormones levels, while birth control pills will.
Stick with the program a while longer. It may take six months or longer to begin to see effects of spironolactone on hair growth, for example. Metformin, likewise, takes two to three months to reach full effect on insulin levels. Consider adding a weight-reduction program as well, if this is an issue.
Yes, the possibilities include an androgen-producing tumor, Cushing's syndrome, hyperprolactinemia, adrenal hyperplasia, or hypothyroidism. A thorough diagnosis is important, especially if your levels of testosterone are above a certain level, or you have symptoms of "virilization" such as facial beard, clitoromegaly (enlarged clitoris), balding at the temples, deepening voice or muscle enlargement.
Due to the link between insulin abnormalities and PCOS, every woman diagnosed with PCOS should have a glucose tolerance test to check for pre diabetes or diabetes. Insulin levels may also be checked to assess for hyperinsulinemia, as a sign of insulin resistance. A two-hour glucose tolerance test, where you drink a sugary solution and your blood is drawn before and one and two hours afterward, is best for testing women with PCOS. If you have diabetes, it is important to begin treatment and monitoring early to avoid complications.
For information and support on coping with Polycystic Ovary Syndrome, please see the recommended organizations, books and Spanish-language resources listed below.
American Society for Reproductive Medicine (ASRM)
Website: https://www.asrm.org
Address: 1209 Montgomery Highway
Birmingham, AL 35216
Phone: 205-978-5000
Email: asrm@asrm.org
Polycystic Ovarian Syndrome Association
Website: https://www.pcosupport.org
Address: P.O. Box 3403
Englewood, CO 80111
Hotline: 1-877-775-PCOS (1-877-775-7267)
Email: info@pcosupport.org
Books
A Gynecologist's Second Opinion
by William H. Parker and Rachel L. Parker
Pocket PCOS: A Quick and Practical Guide to Polycystic Ovary Syndrome with Personal Testimonies
by Christopher Hearn and M.D. Shahab S. Minassian
Spanish-language resources
Medline Plus: Ovarian Cysts
Website: https://www.nlm.nih.gov/medlineplus/spanish/ovariancysts.html
Address: Customer Service
8600 Rockville Pike
Bethesda, MD 20894
Email: custserv@nlm.nih.gov
American Academy of Family Physicians
Website: https://familydoctor.org/online/famdoces/home/women/reproductive/gynecologic/279.printerview.html
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