What is PCOS and why is it so difficult to diagnose? The doctors explain

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

Polycystic ovary syndrome (PCOS) is the most common hormonal disease in women during their reproductive years. However, no one knows exactly what causes it and there is no cure.

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

But making a diagnosis is not easy. For women with symptoms of PCOS, research shows it can take two years and multiple doctors to get a proper diagnosis.

Even if you are familiar with the term PCOS, you may 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 US Office on Women’s Health, PCOS is a health problem caused by an imbalance of reproductive hormones, which affects the functioning of the ovaries (organs that make eggs and hormones that regulate the menstrual cycle).

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

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 produce too much androgen (a type of hormone).

What causes PCOS?

Beyond reproductive hormone imbalances, it’s unknown what exactly causes PCOS, says Dr. Mokerrum Fatima Malik, an obstetrician at the University of Maryland Medical Center and an assistant professor of obstetrics, gynecology and reproductive services at the College of Medicine from the University of Maryland.

However, high levels of androgen hormones and insulin can contribute to this condition, according to the US Office on Women’s Health.

If a person’s mother has PCOS, that person could 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 PCOS.

What are the signs of PCOS?

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

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

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

Other signs of PCOS include:

What other ways does PCOS affect 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 include high blood pressure, increased waist circumference, high blood sugar levels, low levels of high-density lipoprotein cholesterol (also known as like “good cholesterol”) and high triglyceride levels, Malik explains.

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

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

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

Does PCOS affect mental health?

Yes, say the experts. Overall, PCOS is a complex condition that affects the functioning of the ovaries, resulting in a wide range of reproductive, metabolic and psychological symptoms that affect women differently, explains Dr. Nitu Bajekal, OB/GYN and author of Live PCOS free.

Shastri explains that PCOS can cause body changes, such as excess facial and body hair, acne and obesity, which can take a huge psychological toll, 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 is also the social stigma often associated with PCOS symptoms such as weight gain, scalp hair loss, acne and excess hair growth. Because of the stigma, many women can’t talk openly about the disease or seek the help they deserve, Bajekal says.

Getting a proper PCOS diagnosis is another hurdle that people with PCOS often face. Because PCOS manifests itself in many ways, people with PCOS symptoms may end up seeing health professionals in different specialties for the more familiar symptoms, such as irregular menstrual cycles, acne, and excessive hair growth, to the less familiar ones, such as now as eating disorders or sleep disorders, explains Bajekal. “The dots may never be connected to properly diagnose PCOS, leading to fragmented and disjointed medical advice and treatment,” he says.

If you or a loved one has been diagnosed with PCOS, Malik says, “it’s important to talk to your doctor about how you’re feeling and your thoughts about your symptoms or diagnosis so you can be properly evaluated and treated.”

How is PCOS diagnosed?

To diagnose PCOS in adults, Bajekal says, two of the following three criteria must be met:

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

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

  • Evidence of cysts in one or both ovaries. A doctor may find this evidence during a pelvic ultrasound.

It’s also worth noting that PCOS causes similar symptoms to other hormone disorders, including thyroid disease, Cushing’s syndrome, and higher-than-normal levels of the hormone prolactin (also known as hyperprolactinemia). A doctor may also run tests to rule out the possibility that your symptoms may be due to other causes.

Malik advises that “women who have PCOS, or who think they may have PCOS, should have a complete physical exam, including a pelvic exam, ultrasound, and lab work to check for other metabolic or endocrine conditions, such as thyroid disease, Cushing’s syndrome, or androgen-secreting tumors, which can mimic PCOS.”

How is PCOS treated?

Because doctors aren’t sure what triggers PCOS, available treatment options are mostly about controlling the symptoms associated with the syndrome, Malik explains. So treatment will depend on a person’s symptoms, adds Shastri.

According to Bajekal, lifestyle habits, such as how we eat, sleep, exercise and manage stress, greatly influence PCOS symptoms. While there’s 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 making these lifestyle changes is especially critical for people with PCOS who are at increased risk for chronic conditions such as endometrial cancer, type 2 diabetes and heart disease.

Bajekal recommends these lifestyle changes for people with PCOS:

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

  • move often According to Bajekal, aerobic exercise and resistance training can help improve insulin sensitivity in women with PCOS. She recommends “aim for 300 minutes of exercise per week (about an hour each weekday) and exercise outdoors in natural light.” He adds that “any amount of movement is beneficial, even 15 minutes a day has been shown to reduce the risk of mortality.”

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

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

  • Establish positive social connections. Bajekal advises having a support network or a friend you can trust. “Surround yourself with people who bring out the best in you,” she says. Being alone can be a source of chronic stress and is linked to an increased risk of heart disease, high blood pressure and type 2 diabetes, he 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, drugs that lower cholesterol levels, for heart health benefits, Malik explains.

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

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

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

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