As a woman, dealing with acne, stray hairs, weight gain, and period problems seems like par for the course — and in some people’s minds, these are health woes that women just need to deal with. But a condition called polycystic ovary syndrome (PCOS) may really be behind these problems. And if you have PCOS, it’s important to get the right diagnosis for your current comfort and long-term health. Unfortunately, the reality is that several hurdles can make getting that diagnosis especially difficult.
PCOS is a hormonal problem that affects 10 million women in the world.
Women with PCOS can produce high levels of androgens, which are male sex hormones. (Women typically have low amounts of these.)
Nonetheless, rather than referring to the condition as PCOS, experts now see it as a reproductive metabolic syndrome, says David A. Ehrmann, MD, an endocrinologist and clinical professor specializing in PCOS at the University of Chicago in Illinois. That’s because not everyone who has the condition has polycystic ovaries (the development of cysts, or fluid-filled sacs, in the ovaries).
The first step in understanding PCOS is learning about the signs and symptoms. Take a look at some of the most common ones, so you know if PCOS may be at the root of your health concerns.
PCOS affects everyone a little differently. These are some of the most common symptoms to look for.
Irregular Periods
You may have irregular, unpredictable periods (called oligomenorrhea). This isn’t just two or three days late here or there; it means that your cycle length is greater than 35 days.
A normal cycle can range between 22 and 35 days. “[PCOS] patients have unpredictable cycles and have about eight or fewer cycles per year,” says Dr. Ehrmann. Periods may also be especially heavy or really light.
Difficulty Conceiving
People with PCOS often have trouble getting pregnant. In fact, PCOS is one of the most common causes of
female infertility.
Fertility problems arise from a lack of ovulation. Even if you are getting your period (albeit very late), that’s not an assurance that you’re ovulating. You can get your period without ovulating. That’s why you may not notice anything is wrong until you’ve been trying to get pregnant for some time.
Excess Hair Growth
Because PCOS is a hormonal condition in part marked by higher levels of androgens (male hormones), women experience excess hair growth in unwanted places — a condition also known as hirsutism.
With PCOS, you may often notice this unusual hair growth on your face, arms, back, chest, thumbs, toes, and abdomen.
But this symptom can vary depending on your ethnicity, which may predispose you to having excess hair, says
Loren Wissner Greene, MD, professor of endocrinology and ob-gyn at NYU Langone Health in New York City. She explains that this is one symptom to pay close attention to. In people with PCOS, hirsutism was strongly linked to metabolic problems, research found.
Hair Loss
While you may grow hair in places you don’t want, you may also lose hair that you’d otherwise want to keep. Because of those excess androgens, women may experience male-pattern hair loss, which is thinning hair on the top of the head or hair recession. This may be more severe in middle-aged women.
Acne
Elevated androgens come into play again, this time delivering skin concerns like acne in people with PCOS. This increase in androgens makes your skin produce more oil, which makes it easier for your pores to get clogged and lead to acne. However, this type of acne isn’t like the hormonal acne that people often experience before and during their periods. PCOS-related acne tends to be deeper in your skin, more inflamed, and located on the lower part of your face, like the chin and jawline.
Unintended Weight Gain
While half of women with PCOS experience weight gain or live with obesity, the condition can also affect people who are thin.
The view that all women with PCOS are overweight or have obesity is a misnomer that can stand in the way of receiving the right diagnosis, says Amy Medling, a certified health coach, the founder of
PCOS Diva, and the author of
Healing PCOS: A 21-Day Plan for Reclaiming Your Health and Life With Polycystic Ovary Syndrome. “Some doctors are only looking for the stereotypical overweight woman, meaning there are lots of thin women who are missed [during diagnosis],” she says.
Increased Risk of Mood Disorders
People who live with PCOS have a heightened risk of developing mental health conditions like depression and anxiety. Research explains that this may be due to dysfunction with important body systems like gut health, hormones, and the immune system.
Insulin Resistance
People with PCOS are typically not as responsive to the hormone insulin, which helps ferry glucose to our cells for energy. This lack of response to insulin is known as insulin resistance, which can often lead to the development of diabetes if untreated. This is when the metabolic problems associated with PCOS tend to arise.
According to Mayo Clinic, insulin resistance can also cause secondary symptoms like
skin tags and a darkening of the skin, called acanthosis nigricans, which appears as dark, velvety patches around the armpits, groin, and neck.
Trouble Sleeping and Fatigue
Tiredness and low energy are extremely common if you live with PCOS.
Research explains that people with PCOS are more likely to have sleep apnea, a condition that causes brief pauses in breathing, which can contribute to daytime sleepiness.
Issues with sleep and insomnia can also worsen mood swings.
Usually, PCOS appears around early puberty, but it can develop in your teens or twenties, says Ehrmann. More unlikely is when the condition emerges later in life, such as in your thirties and forties, he notes. That said, significant hurdles stand in the way of getting a proper diagnosis.
First, there’s embarrassment. “Many women don’t want to talk about their symptoms, and they don’t tell their doctors specifically what’s going on,” says Medling. Or if a woman is seeking help, she may be seeing different doctors to treat the varying symptoms. For example, a dermatologist for acne, an ob-gyn for period problems, and a psychologist for a mood disorder, for instance. “The pieces aren’t put together,” she says. That’s why, as Medling notes, as many as 50 percent of women with PCOS are undiagnosed.
If you have PCOS symptoms or feel like you may be at an increased risk of developing the condition, it’s important to make an appointment with your healthcare provider. They can conduct a physical exam, order imaging scans, discuss your symptoms, and help you understand your options for treatment.
Healthcare providers use the Rotterdam criteria for diagnosis. For a PCOS diagnosis, you must have two of three markers: androgen excess (marked by hirsutism, acne, hair loss, or laboratory evidence of androgen excess), ovulatory dysfunction (
irregular menstruation), or polycystic ovaries (found on an ultrasound).
The first step that many people take if they suspect they have PCOS is meeting with an ob-gyn (for the menstrual irregularities). But Ehrmann also recommends getting an endocrinologist involved. You can do this by asking your primary care provider for a referral. While there are no tests to directly diagnose PCOS, it’s often a matter of elimination. “We have to exclude other causes that can give the same picture,” says Ehrmann. That includes hypothyroidism, high prolactin levels, and rare conditions like Cushing syndrome and acromegaly. Providers will often figure this out via blood and urine tests.
If you suspect that you may have PCOS, talk to your healthcare provider. “It’s best to get diagnosed as young as possible,” says Dr. Wissner Greene. For one, there’s comfort. Young women may say their periods are “crazy,” they are worried about bleeding to death, and they just knew something was wrong all along. Second, because PCOS can increase the risk of type 2 diabetes (due to insulin resistance), heart disease,
high blood pressure (hypertension), sleep apnea, and stroke, it’s important to find it as early as possible to help prevent these conditions from occurring in the future.
Plus, getting diagnosed and treated can help support your reproductive life and overall health, she adds.
