What is PCOS and why is it so hard to diagnose? Doctors explain.

PCOS symptoms include increased acne and male-pattern hair growth, such as hair growing on a woman's chin or chest.
PCOS symptoms include increased acne and male-pattern hair growth, such as hair growing on a woman's chin or chest. (Photo: Getty Images)

Polycystic ovary syndrome (PCOS) is the most common hormonal condition in women during their reproductive years. Yet no one knows precisely what causes it, and it has no cure.

PCOS is a common reason why women have difficulty getting pregnant or have complications during pregnancy. This condition is also tied to several health problems, such as insulin resistance, obesity, depression and problems with metabolism.

But getting a diagnosis isn't easy. For women with PCOS symptoms, research shows it can take two years and reaching out to multiple doctors to get a proper diagnosis.

Although you may be familiar with the term PCOS, you might not be sure what this condition is and what it does to the body. Here's what you need to know about PCOS.

What is polycystic ovary syndrome?

According to the U.S. Office on Women's Health, PCOS is a health problem caused by an imbalance of reproductive hormones, which affects how the ovaries (organs that make eggs and hormones that regulate the menstrual cycle) work.

PCOS is characterized by ovulatory dysfunction, polycystic ovaries and elevated androgen levels, Dr. Shefali Shastri, clinical director and managing partner at Reproductive Medicine Associates and clinical associate professor for the department of obstetrics and gynecology at Robert Wood Johnson University Hospital, tells Yahoo Life.

In other words, people with PCOS have ovaries that may release eggs infrequently, become enlarged with many fluid-filled sacs containing immature eggs (called follicles) or make too many androgens (a type of hormone)

What causes PCOS?

Beyond reproductive hormone imbalances, what exactly causes PCOS is unknown, says Dr. Mokerrum Fatima Malik, an ob-gyn with the University of Maryland Medical Center and assistant professor of obstetrics, gynecology and reproductive services with the University of Maryland School of Medicine.

However, high androgen hormone and insulin levels may contribute to this condition, according to the U.S. Office on Women's Health.

If a person's mother has PCOS, that person might have it, too. Some research suggests that PCOS tends to run in families — children whose parents have PCOS are five times more likely to have it.

What are the signs of PCOS?

People with PCOS may have signs of high androgen levels, such as male-pattern hair growth — namely, hair growing on their chin, chest, stomach or thighs — hair loss on the head and increased acne, Malik notes.

"They may have increased weight gain, specifically in their abdomen, experience abnormal periods or have difficulty getting pregnant," she adds.

Interestingly, research suggests that PCOS is tied to weight gain and obesity in about half of women. And about 70% to 80% of people with PCOS have issues becoming pregnant, according to a 2015 review.

Other signs of PCOS include:

  • Deepened voice

  • Decreased breast size

  • Dark, thickened skin patches at the back of the neck, on knuckles or elbows and in skinfolds

  • Increased muscle size

  • Tiredness

  • Sleep problems

  • Headaches

  • Mood swings

  • Depression

  • Anxiety

What are other ways that PCOS affects your physical health?

PCOS does more to the body than you might imagine. People with PCOS are at increased risk of metabolic syndrome — a group of conditions that includes elevated blood pressure, increased waist circumference, high blood-sugar levels, reduced high-density lipoprotein cholesterol levels (aka "good cholesterol") and elevated triglyceride levels, explains Malik.

Because of this PCOS effect, metabolic syndrome increases a person's risk of health problems, including heart disease, diabetes and stroke. "As such, women with PCOS are at increased risk of insulin resistance and diabetes, as well as heart disease," Malik adds.

She advises that "women with PCOS should be routinely screened for these health conditions in addition to their regular maintenance health exams."

The condition also affects fertility. According to the Office on Women's Health, PCOS is one of the most common causes of infertility in women. That's because the hormonal imbalance affects ovulation by interfering with the growth and release of eggs from the ovaries.

Does PCOS affect mental health?

Yes, say experts. Generally, PCOS is a complex condition that affects how the ovaries function, resulting in a wide range of reproductive, metabolic and psychological symptoms that affect women differently, explains Dr. Nitu Bajekal, a London-based ob-gyn and author of Living PCOS Free.

Shastri explains that PCOS can cause bodily changes, such as excess facial and body hair, acne and obesity, which can be a tremendous psychological burden, affecting body image, self-esteem and confidence.

Malik agrees, adding that PCOS symptoms such as weight gain and infertility are significant sources of psychological distress and can lead to serious conditions such as anxiety and depression.

There's also the societal stigma often associated with PCOS symptoms, such as weight gain, scalp hair loss, acne and excess hair growth. Because of the stigma, many women aren't able to talk about the condition openly or seek the help they deserve, says Bajekal.

Getting a proper PCOS diagnosis is another hurdle that people with PCOS often face. Because PCOS shows up in many ways, people with PCOS symptoms may end up seeing health care professionals from different specialties for the most well-known symptoms, such as irregular menstrual cycles, acne and excess hair growth, to the lesser-known ones, such as disordered eating or sleep disturbances, Bajekal explains. "The dots may never connect to make a proper diagnosis of PCOS, leading to fragmented and disjointed medical advice and treatment," she says.

If you or a loved one has been diagnosed with PCOS, Malik says, it's "important to talk with your doctor about how you are feeling and your thoughts regarding your symptoms or diagnosis so that you can be properly assessed and treated."

How is PCOS diagnosed?

To diagnose PCOS in adults, says Bajekal, any two out of three of the criteria below have to be met:

  • Ovulatory dysfunction: Your body doesn't release eggs regularly, resulting in missed or irregular periods

  • Clinical or lab evidence of hyperandrogenism or high androgen levels. A doctor may look at symptoms such as acne, scalp hair loss and darker, thicker body hair, or do blood tests.

  • Evidence of cysts on one or both ovaries. A doctor might find this evidence during a pelvic ultrasound scan.

It's also worth noting that PCOS causes symptoms that are similar to other hormonal disorders, including thyroid disease, Cushing's syndrome and higher-than-normal prolactin hormone levels (aka hyperprolactinemia). A doctor may also do tests to rule out the potential that your symptoms might be from other causes.

Malik advises that "women who have PCOS, or think they may have it, undergo a complete physical exam, including a pelvic exam, ultrasound and lab work to check for any other metabolic or endocrine conditions — such as thyroid disease, Cushing's syndrome or androgen-secreting tumors — that may mimic PCOS."

How is PCOS treated?

Because doctors are unclear about what triggers PCOS, available treatment options are mostly about controlling the symptoms associated with the syndrome, Malik explains. Hence, treatment will depend on a person's symptoms, Shastri adds.

Lifestyle habits, such as how we eat, sleep, exercise and handle stress, heavily influence PCOS symptoms, according to Bajekal. Although there is no cure for PCOS, making healthy lifestyle changes — which is the first treatment option a doctor may recommend — can go a long way toward managing PCOS, she says.

She adds that adopting these lifestyle changes is particularly critical for people with PCOS who have a higher risk of chronic conditions such as endometrial cancer, type 2 diabetes and heart disease.

Bajekal recommends these lifestyle changes for people with PCOS:

  • Eat a plant-predominant diet. A fiber-rich, plant-based diet that includes whole grains, beans, fruit, vegetables, nuts and seeds, herbs and spices promotes healthy gut bacteria and helps to reduce inflammation and oxidative stress, Bajekal explains. "It also normalizes blood sugars and lowers insulin resistance," she says, benefiting people with PCOS.

  • Move often. Aerobic exercises and resistance training can help improve insulin sensitivity in women with PCOS, according to Bajekal. She recommends "aiming for 300 minutes of exercise per week — about an hour every weekday — and exercising outdoors in natural light." She adds that "any amount of movement is beneficial — even 15 minutes a day has been shown to reduce mortality risk."

  • Take sleep health seriously. Bajekal recommends maintaining a regular sleep routine with seven to nine hours of restorative sleep each night.

  • Manage stress levels. Activities such as exercise, meditation, mindfulness, community work, talk therapy and yoga can help to manage stress and lower cortisol (stress hormone) levels, Bajekal says.

  • Make positive social connections. Bajekal advises having a supportive network or a friend you can trust. "Surround yourself with people who bring out the best in you," she says. Being lonely can be a source of chronic stress and is tied to an increased risk of heart disease, high blood pressure and type 2 diabetes, she notes.

To help treat symptoms, some women may need insulin-sensitizing medications such as metformin (Glucophage) to control blood-sugar levels. Others may require statins — medicines that lower cholesterol levels — for heart health benefits, Malik explains.

Women who'd like to regulate their menstrual cycle may benefit from hormonal birth control, Malik says. But for those with PCOS who would like to get pregnant but are having trouble with it, Shastri recommends speaking with a fertility specialist about treatment options.

Those with excessive hair growth or acne may also benefit from taking oral contraceptives, which can decrease androgen production; spironolactone, which blocks the effects of androgen on the skin; or prescription Eflornithine cream, which can slow facial hair growth, Shastri suggests.

There are also hair-removal treatments, such as electrolysis and laser hair removal, to help manage excess body hair, if desired, she adds.

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