What you may not know about PCOS: questions and misconceptions

Polycystic Ovary Syndrome (PCOS) is a common but often undiagnosed condition in which certain hormones are out of balance. These imbalances typically show up as irregular menstrual cycles, a higher level of androgens (a type of hormone including testosterone) in the body, and small cysts in the ovaries.

PCOS can cause excess facial and body hair, acne, and mood changes. Here are some answers to common questions about PCOS.

What is PCOS?

Is PCOS a rare illness?

Polycystic Ovary Syndrome (PCOS) is very common, but it remains undiagnosed and unmanaged in most people who have it. It may affect roughly 1 in 12 women and people with cycles of reproductive age (8%, or ~6-13%), but this likely varies across populations (1-5). Of those who have it, about 7 in 10 may go undiagnosed (5,6).

Is PCOS simply a disease of the ovaries?

No, it’s not. PCOS is an endocrine and metabolic disorder that affects the body well beyond the ovaries. Not everyone with PCOS has ovarian cysts, and and polycystic ovaries on their own don’t meet the criteria for diagnosis. There are clinical and research groups pushing for a renaming of the disorder, arguing that the current name impedes progress in research and creates confusion. One suggestion for a new name is “Metabolic reproductive syndrome” (7).

Do we know what causes PCOS?

No. It’s still not understood what causes PCOS, and the causes probably vary for different people. Genetics, behavior, lifestyle, and environment may all play a role.

PCOS diagnosis

Is it important to get diagnosed and treated for PCOS?

Yes. PCOS is underdiagnosed and undertreated. This may be because symptoms can be mild or seem unrelated. But untreated PCOS can lead to a wide range of more serious health conditions, and the symptoms of the disorder can cause significant distress. Unmanaged PCOS is associated with type 2 diabetes, infertility, cardiovascular disease, obesity, sleep apnea (disrupted breathing in sleep), non-alcoholic fatty liver disease, and depression (8-10). Early diagnosis and treatment can help reduce these risks significantly. Healthcare providers can often give a diagnosis after a short assessment or simple tests.

Read how different healthcare providers approach PCOS diagnosis here and here.

Does everyone with PCOS have Polycystic Ovaries?

No. Not everyone with PCOS has small cysts in their ovaries—cysts are a symptom of PCOS, rather than a cause. While they can contribute to hormonal imbalances, the cysts themselves are usually harmless (11).

PCOS cysts are different than the kind of ovarian cysts that grow, rupture, and cause pain.

If my menstrual cycle is irregular, does that mean I have PCOS?

No. Infrequent or absent menstrual periods can be caused by other health conditions or lifestyle factors, such as having a thyroid disorder (an over- or under-active thyroid gland) or exercising too much without getting sufficient calories. Clue contributor Dr. Shruthi Mahalingaiah wrote more about how she determines the causes of irregular periods.

Do you need to have an ultrasound to get diagnosed with PCOS?

Not always. When you see your healthcare provider they will probably ask questions about your symptoms and your medical and menstrual history and perform a simple physical exam. If they think PCOS may be present, they may also: Ask questions about your full health history, including medical and surgical history, social history, and family history Test blood tests to check the levels of hormones and sugars in the blood. Hormones they will typically check for include: testosterone, thyroid hormone, prolactin, and tests of sugar metabolism Perform a pelvic ultrasound (sonogram) of your ovaries and uterus

PCOS treatment

What medications are used to treat PCOS?

Several medications may be prescribed for PCOS. Birth control is not a cure, but it is often prescribed as a first-line treatment after or with lifestyle changes. Other medications which may be prescribed for PCOS include antidiabetic medication and anti-androgen medication to help in balancing hormones.

Metformin is a drug sometimes prescribed to help regulate blood sugar in some forms of PCOS. People who are trying to get pregnant might be prescribed a drug to help them ovulate (12-14). Antidiabetic medications, which can improve the way the body uses insulin, are sometimes prescribed in combination with other measures to help manage weight (15,16).

Are there things other than medicine that can help treat PCOS?

Yes. Diet, exercise, and behavioral changes can have a big impact in preventing and managing PCOS (17). Reestablishing regular ovulation will help with the symptoms and health impacts of the condition. Limiting simple carbohydrates and sugars in the diet can help keep insulin in balance, and may prevent inflammation, but there isn’t yet strong evidence that one diet is best for everyone (18-22).

Not smoking is also important, as nicotine may increase androgenic activity and smokers tend to have more testosterone in their body (23). Smoking is associated with increased free testosterone and fasting insulin levels in women with polycystic ovary syndrome, resulting in aggravated insulin resistance (24).

Some people seek out complementary medicine, including herbal treatments and supplements to help with their PCOS. More research is needed on the effectiveness of these approaches for PCOS.

PCOS and fertility

Do people with PCOS ovulate?

Not always. In people without PCOS, ovulation (the release of an egg from the ovary) typically happens about once a month. People with PCOS may ovulate less frequently or predictably, and may be more prone to miscarriages, which is why PCOS is a common cause of infertility.

Can people with PCOS get pregnant?

Yes. For people trying to become pregnant, PCOS can make it harder to time sex to the fertile days of their menstrual cycle, when ovulation happens. It can also take longer to become pregnant if ovulation is only occurring every few months.

People with PCOS are more likely to seek out and require fertility treatments than people who don’t have it. But research shows that over their lifetimes, both people with and without PCOS have a similar number of pregnancies and children (25,26). In fact, the majority of people with PCOS who are trying to conceive will become pregnant and give birth without any fertility treatment at least once in their life (26).

If I have PCOS do I still need to use birth control?

Yes, if you are having penis-vagina sex and want to avoid pregnancy. Some people with PCOS think they’re unable to become pregnant, but this isn’t true. Ovulation can still happen even if it’s not on a predictable schedule. It’s important for people who have PCOS to use some form of birth control if they don’t want to become pregnant and are having sex that could lead to a pregnancy.

Read more about PCOS including stories about PCOS diagnosis, management, and transgender and nonbinary people’s experiences of PCOS.

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