PCOS Signs, Symptoms, and Diagnosis

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, health woes that women simply need to learn to deal with. But a condition called polycystic ovary syndrome, or PCOS, may really be behind these problems. And if a woman has PCOS, it’s important to get the right diagnosis for her current comfort, long-term health, and any plans for getting pregnant. Unfortunately, the reality is that there are several hurdles that can make getting that diagnosis especially difficult.

PCOS is a hormonal problem that affects 10 million women in the world. (1) Women with PCOS can produce high levels of androgens, which are male sex hormones. (Women typically have low amounts of these.) (2) Nonetheless, rather than referring to the condition by its popular name — PCOS — experts now see it as reproductive metabolic syndrome, says David A. Ehrmann, MD, director of the University of Chicago Center for PCOS in Illinois. That’s because not everyone who has the condition has polycystic ovaries (or the development of cysts, or fluid-filled sacs, in the ovaries); more important are the reproductive and metabolic abnormalities that are the hallmarks of PCOS.

The first step in understanding PCOS is learning about the common signs and symptoms. Below, take a look at some of the most common ones, so you know whether PCOS may be at the root of your health issues.

1. Irregular or Unpredictable Periods May Be a Sign of PCOS

You may notice you have irregular, unpredictable periods (called oligomenorrhea). This isn’t just two to three days late here or there; it means that your cycle length is greater than 35 days. (3) A normal cycle can range between 22 and 35 days. “Patients have unpredictable cycles, and have about eight or fewer cycles per year,” says Dr. Ehrmann. This is due to a lack of progesterone in women with PCOS. (1) Periods may also be especially heavy or really light.

2. Difficulty Conceiving Is One of the Hallmark Symptoms of the Syndrome

Women with PCOS have trouble getting pregnant. In fact, PCOS is one of the most common cause of female infertility. (4) Fertility problems arise from a lack of ovulation. Even if a woman is getting her period (albeit very late), that’s not assurance that she’s ovulating. She can get her period without ovulating. That’s why a woman may not notice anything is wrong until she’s been trying to get pregnant for some time.

3. Excess Hair Growth in Unexpected Places on the Body (Hirsutism)

Because PCOS is a hormonal condition in part marked by higher levels of androgens (male hormones), women experience excess hair growth in unwanted places. With PCOS, women see this most often on their face, arms, back, chest, thumbs, toes, and abdomen. (5) 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. This is one symptom to pay close attention to. In women with PCOS, hirsutism was strongly linked to metabolic problems, research has found. (6)

4. On the Flip Side, Hair Loss Could Also Signal You Have PCOS

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 suffer from “male pattern” hair loss, which is thinning hair on the top of the head or hair recession, something that may be more severe in middle-aged women. (5)

5. Excess Androgens May Make Certain Skin Types More Prone to Acne

Unfortunately, elevated androgens come into play again, this time delivering skin problems like acne. That said, certain skin types may be more vulnerable to acne, notes Dr. Greene.

6. Women With PCOS May Be More Likely to Be Overweight or Obese

While half of women with PCOS experience weight gain or are obese, it can also affect women who are thin. (5) The view that all women with PCOS are overweight or obese is a misnomer that can stand in the way of receiving the right diagnosis, says Amy Medling, certified health coach, founder of PCOS Diva, and 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,” she adds.

7. PCOS Is Linked With Mood Disorders, Such as Anxiety and Depression

About one-quarter of women with PCOS have mood-related disorders, says Medling. (7) These include anxiety, depression, poor body image, and even eating disorders. One 2016 meta-analysis on six studies that looked at women from four countries found that depression and anxiety were about three times more likely in those with PCOS compared to those without the condition. (8) A potential reason is the distress from PCOS-related body changes and decreased body image, the researchers note. Therefore, your doctor should screen you for psychological problems so he or she can be best prepared to help you.

8. Signs of Insulin Resistance, the Hallmark of Type 2 Diabetes, Are Associated With PCOS

Women 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. (1) In fact, 65 to 70 percent of women with PCOS are insulin resistant. (9) (This is where the metabolic problems associated with PCOS arise.) According to Medling, due to insulin resistance, women may notice skin issues like skin tags or a darkening of the skin, called acanthosis nigricans, which appears as dark, velvety patches around the armpits, groin, and neck. (10) Insulin resistance is the hallmark of type 2 diabetes, though people can have insulin resistance without developing the disease.

9. Sleep Trouble and the Resulting Fatigue Are Symptoms of PCOS

Tiredness and low energy are extremely common symptoms in women with PCOS. (11) One reason: Women with PCOS are more likely to have sleep apnea, a condition marked by brief pauses in breathing, which can contribute to daytime sleepiness. (5) Issues with sleep and insomnia can also exacerbate mood problems.

Usually PCOS appears around puberty, but it can appear in a woman’s teens or twenties, says Ehrmann. More unlikely (but still possible) is when the condition emerges in a woman’s thirties and forties, he notes. That said, there are significant hurdles that stand in the way of a woman getting the proper diagnosis.

First, there’s the embarrassment factor. “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. (A dermatologist for acne, her ob-gyn for period problems, a psychologist for a mood disorder, for instance.) “The pieces aren’t put together,” she adds. That’s why, as Medling notes, as many as 50 percent of women with PCOS are undiagnosed. (12)

Still, about $4 billion is spent each year in the United States to screen and treat the disease, research indicates. (13) If you have the symptoms on this list or have trouble getting pregnant, see your doctor. He or she will likely conduct a physical exam and talk to you about your symptoms.

Doctors will use the Rotterdam criteria for diagnosis, as advised by guidelines from the Endocrine Society in 2013. (14) For a PCOS diagnosis, a woman must have two of these three: 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). Note that a woman only has to have two of the three criteria, so it’s not necessary to have cystic ovaries. And a woman may only know if she has them depending on what type of doctor she sees. For instance, while an ob-gyn may conduct an ultrasound to look at the ovaries, an endocrinologist will not, says Ehrmann.

Because symptoms like depression, acne, or irregular periods aren’t unique to PCOS, it can be tough to get a diagnosis. “The average number of doctors a woman sees before diagnosis is three. It’s a complicated disorder and diagnosing it takes a number of steps,” notes Ehrmann. (15)

The first step for women is often an ob-gyn (for the menstrual irregularities), but Ehrmann recommends women get an endocrinologist involved as well. (Ask your primary care doctor 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. This will be done via blood and urine tests.

If you suspect you may have PCOS, talk to your doctor. “It’s best to get diagnosed as young as possible,” says Greene. For one, there’s comfort. Young women have been documented as saying their periods are “crazy” or they are worried about “bleeding to death,” and also have expressed that they just knew something was wrong all along. (16) Second, because PCOS can increase the risk of type 2 diabetes (because of insulin resistance), heart disease, high blood pressure (hypertension), sleep apnea, and stroke, it’s important to find it as early as possible to head off these health problems. (4) Plus, getting diagnosed and thus treated can help a woman have a better reproductive life in the future, she adds.