At its heart, polycystic ovary syndrome (PCOS) is a hormonal imbalance. Specifically, women with PCOS have higher than normal levels of androgens or male hormones.
PCOS is usually thought of as a reproductive disorder; it affects 10% of women of childbearing age and usually starts after puberty. But some of its effects seem to have little to do with fertility.
“People can get multiple symptoms for multiple reasons,” says Karen Carlson, MD, assistant professor of obstetrics and gynecology at the University of Nebraska Medical Center. “PCOS is a syndrome with a spectrum of symptoms that you can get, but not everybody gets everything.” (And, of course, not everyone with some of these common symptoms has PCOS.)
To be officially diagnosed with PCOS, you have to have at least two of three symptoms. Those are irregular periods, high levels of androgens, and ovaries with multiple cysts. But there are many other signs as well.
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Irregular periods are the most common sign of PCOS. For many women with PCOS, that means infrequent periods: For adults with the syndrome, periods typically occur at least 35 days apart. Adolescents wait at least 45 days between periods, says Jenny M. Jaque, MD, chief of obstetrics and gynecology at the University of Southern California's Keck School of Medicine.
But there can be large variations between individuals. “It could be once every few months, once every six months,” says Mitchell S. Kramer, MD, chairman of obstetrics and gynecology at Northwell Health’s Huntington Hospital in Huntington, New York.
Periods can also be heavier or lighter than expected, or you could have no periods at all, a condition called amenorrhea.
The reason for all of these irregularities is that you’re not ovulating, or not ovulating regularly. Unless you’re trying to get pregnant, this may seem like a minor issue–or maybe you even like not having your period every month–but not having regular periods can cause trouble down the line. “The longer you go without a period, cells can grow out of control and can become cancerous,” says Dr. Jaque.
With the goal of protecting the uterine lining from cancer, Dr. Jaque says, treatment involves getting ovulation going again. Sometimes diet and exercise modifications can do the trick; other times, birth control pills (if you don’t want to get pregnant) are needed. Some women are even treated with the diabetes drug metformin, which can help restart ovulation.
Don’t forget: Missed periods could also mean you’re pregnant, Dr. Jaque adds.
The only way to know for sure that you have a hormonal imbalance signaling PCOS is to have a blood test done. Lab tests can also rule out other conditions that might be causing your symptoms, including things like thyroid problems or tumors.
While doctors will definitely notice something’s up on your blood work, Dr. Kramer says, no one test will give you a definitive diagnosis of PCOS. Instead, doctors rely on measurements of several different hormones. For instance, levels of testosterone and luteinizing hormone (which helps cue ovulation) may be high, while levels of estrogen may be normal or high. Follicle stimulating hormone will more than likely be normal or low.
There’s no way for you to know on your own if you have polycystic ovaries, but they can show up on imaging tests, usually an ultrasound. “The classic appearance of the ovaries [with PCOS] is they have these small cysts that are collected around the periphery,” says Dr. Kramer. “It almost looks like a string of pearls.”
Strangely enough, polycystic ovaries are not always a component of polycystic ovary disease. Many women don’t show ovarian cysts but get diagnosed with and treated for PCOS anyway. Other people have cysts yet exhibit few symptoms. “Women can be affected in different ways,” says Dr. Carlson.
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PCOS is one of the leading causes of infertility in women. “You’re not ovulating regularly, so it can be tough to get pregnant,” Dr. Kramer explains. But not impossible. In fact, most women with the condition can get pregnant, he adds.
Sometimes losing as little as 10 to 15 pounds will trigger ovulation and improve your odds of conception. (In fact, adopting healthier diet and exercise habits and losing weight can help ease many PCOS symptoms.) Women with PCOS may also use various fertility treatments, starting with clomiphene, which helps with ovulation. In vitro fertilization may be an option for some people when medications don’t help.
PCOS is only one possible explanation for infertility. Make sure you and your doctor rule out other causes as well.
Up to 70% of women with PCOS experience hirsutism, or unwanted hair growth that follows a male pattern. You might find hair appears on your chin, upper lip, or chest. The hair is usually dark and coarse and is caused by the extra male hormones circulating in your body.
However, don’t automatically assume that body hair is a sign of PCOS, as there are many other possible causes. “Hair allover could be based on ethnicity or what medications you’re using,” says Dr. Jaque. Hairy legs and arms are definitely not signs of PCOS, she adds.
Treatments include hormonal contraceptives, sometimes combined with spironolactone, which blocks androgen production or its effects on hair follicles.
Some women also opt for hair removal with electrolysis or lasers, though this usually needs to be done on a regular basis. Creams, like Vaniqa–specifically approved for getting rid of unwanted facial hair on women–can help, though not permanently.
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Instead of or along with male-pattern facial or body hair growth, some women with PCOS experience male-pattern baldness. It’s not all that common, but it can happen–and it can get worse in middle age.
“Women with PCOS can get more male-pattern baldness or thinning in the forehead area, especially if they’ve been untreated for a while,” says Dr. Carlson. “If you don’t get treatment and stop the [hair-thinning] process early, sometimes it isn’t reversible.”
Like other signs of PCOS, thinning hair is the result of hormones behaving abnormally. After trying lifestyle modifications, the go-to treatment is hormonal birth control.
Many women–and men!–have acne for plenty of other reasons. But with PCOS, women might find that acne is associated with irregular periods and can be especially tough to treat.
“Acne is not a criterion [to diagnose PCOS] because it is so common,” says R. Jeffrey Chang, MD, professor emeritus of reproductive medicine at the University of California San Diego. “Most of the people who have acne don’t have elevated testosterone.”
If acne is due to too much testosterone, once again, hormonal birth control can help, says Dr. Carlson. A dermatologist may also recommend topical treatments.
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About half of women with PCOS are obese. Extra fat, especially around the tummy area, can send your hormones further askew.
Women with PCOS who are overweight or obese also often have insulin resistance. Insulin normally moves sugar out of the bloodstream and into storage; insulin resistance is a loss of sensitivity to the hormone that causes higher than normal insulin levels in the blood. That can cause weight gain or make it harder to shed pounds, and it may also predispose you to diabetes.
High levels of insulin may also fuel production of more testosterone.
Of course, losing or maintaining a healthy weight is often easier said than done, but lifestyle changes are the first recommendation for people with PCOS, says Dr. Chang. “That means eating a diet that is healthy, not excessive in calories, accompanied by exercise,” he says. “Walking 30 minutes a day is good, as long as you make sure you get pushed a little bit.”
Other symptoms can also be linked with PCOS, but the relationship isn’t as clear. For instance, some women report dark patches of skin especially along neck creases, under their breasts, or in the groin area, called acanthosis nigricans.
Women with PCOS may also be more prone to sleep apnea, along with higher “bad” LDL cholesterol and triglycerides and lower “good” HDL cholesterol. These are all components of metabolic syndrome, which also plagues women with PCOS.
Even skin tags have been linked with PCOS, but they could also be a result of obesity or aging, says Dr. Carlson.
Mood changes are another PCOS sign to look out for. This is more directly a result of hormones. “You’re almost in a constant state of PMS,” says Dr. Carlson. “A lot of women do get really moody, more so than normal.” Many women with PCOS also suffer from depression and anxiety and have a higher risk of eating disorders, notably binge eating and bulimia.