What is PCOS?

As Mick Jagger was showing us his moves, my friend and I were scream-singing along with the music and taking in the spectacle. And then it happened. My hand brushed my chin, and I felt that first bristly hair. I was 14; I’d barely started shaving my legs… could I really have hair growing from my face? I spent the rest of the concert fervently plucking at the quarter-inch invader while Mick lamented his inability to get satisfaction. This was my first hint that I had polycystic ovary syndrome (PCOS), a common hormonal disorder among women of childbearing age.

What is PCOS?

PCOS is a hormonal condition that involves the endocrine and reproductive systems. It affects between 5% and 13% of women between 15 and 44 years of age, and can cause enlarged ovaries or small ovarian cysts. It was only after my diagnosis as an older teenager that I discovered how many other women in my life have the same condition. It’s more prevalent than many women realize.

What are the first signs of PCOS?

PCOS symptoms can vary from person to person. Someone with PCOS may exhibit some or all of the following:

• Irregular menstrual periods, including no menstrual period, frequent missed menstrual periods, heavy bleeding, or bleeding without ovulation
• Weight gain or obesity
• Difficulty losing weight
• Fertility problems or infertility
• Pelvic pain
• Excess hair growth in areas such as face, chest, stomach, or thighs—sometimes called hirsutism
• Oily skin
• Acne, particularly if it is severe, late-onset, and/or doesn’t respond well to over-the-counter treatment
• Acanthosis Nigricans (patches of dark, thickened, velvety skin), found in the folds of the neck, armpits, groin, and other areas

What causes PCOS?

“The cause of PCOS is unknown,” explains Ann Peters, MD, a gynecologist and surgeon in The Gynecology Center at Mercy Medical Center in Baltimore, Maryland. “PCOS is a complex disease that is believed to be in part congenital (hereditary) and in part environmental. PCOS can run in families. Approximately one out of four patients with PCOS have a mother who had been diagnosed with PCOS as well (in some studies this number is even higher).”

While genetic and environmental factors are suspected, Geoffrey Cly, MD, an OB/GYN in Fort Wayne, Indiana, points out that no studies have conclusively shown a genetic link or specific environmental substance that causes PCOS.

As it did for me, PCOS usually develops in adolescence, but Dr. Peters says, “the diagnosis may be delayed for a couple of years following the onset of menses, as irregular menstrual cycles are not uncommon as the communication between the brain, ovaries, and uterus matures.”

Birth control pills can mask symptoms and cause inaccurate test results, which causes a delay between the onset of PCOS and the diagnosis. “PCOS may not be diagnosed until patients stop birth control methods or notice irregular periods as they attempt to conceive,” explains Dr. Peters, adding that in some cases PCOS appears later in life—particularly in women who have gained weight sequentially during their teens and early 20s.

The Mayo Clinic mentions high insulin levels—the hormone that balances blood sugar levels, excess androgen production, and low-grade inflammation as risk factors that potentially play a role in PCOS, but to date an exact cause is not known.

Is PCOS serious?

While some symptoms of PCOS, such as excess hair or acne are cosmetic issues, PCOS is associated with other more serious health problems.

“Women with PCOS are at increased risk for a number of medical problems,” Dr. Peters says. “[These include] metabolic syndrome (a constellation of diagnoses including high blood pressure, lipid abnormalities, and obesity), insulin resistance paired with higher rates of type 2 diabetes, heart disease, infertility, and uterine/endometrial [lining of the uterine] cancer.”

Other complications may include sleep apnea, nonalcoholic steatohepatitis (a severe liver inflammation caused by fat accumulation in the liver), gestational diabetes, and miscarriage or premature birth.

This doesn’t mean that all women with PCOS will develop these conditions, but the increased health risk means treating PCOS is important. Dr. Peters points out that “PCOS is a life-long disease.”

PCOS can also affect mental health. “Depression and emotional disturbances [are] significant issues that should not be left untreated by counseling, group therapy, and/or medications when necessary,” Dr. Cly says.

A study supervised by Columbia University School of Nursing professor Nancy Reame, MSN, Ph.D., and published in the Journal of Behavioral Health Services & Research found that menstrual irregularity was the symptom most associated with psychiatric problems.

How is PCOS diagnosed?

The first step is seeing your healthcare provider. Your general practitioner is a good place to start. Depending on your symptoms and treatment required, your GP may send you to see a women’s health doctor or other specialists such as a gynecologist, an endocrinologist, and/or a dermatologist.

Your doctor may ask about your symptoms and how long they have been present, as well as which medications you are taking. They may also send you for blood tests, particularly to check for high levels of androgen, i.e. testosterone (male hormone).

An ultrasound to check for ovarian cysts may also be advised. “Women who don’t have PCOS may also have cysts, but fewer than 12 don’t meet the criteria for a diagnosis,” writes Dr. Jessica Chan, an assistant professor of Obstetrics and Gynecology at Cedars-Sinai and reproductive endocrinologist with a specialty in PCOS.

Dr. Chan also points out that some women with PCOS may have no cysts at all. I fell into this category at the time of my diagnosis and for many years after. My doctor explained to me then that because PCOS is a syndrome, ovarian cysts do not need to be present to make a PCOS diagnosis if other symptoms exist.

Dr. Chan lists the criteria for a PCOS diagnosis as presenting with two or more of the following:

• Irregular, heavy, or missed periods due to missed ovulation (this can be a cause of infertility)
• Signs of higher-than-normal levels of androgens, which may include excess body hair in places men typically grow hair (face, chest, back, etc.), or hair loss. Androgen levels can also be checked via bloodwork.
• 12 or more ovarian cysts (larger than normal egg follicles) as indicated via ultrasound.

A list of tests are usually ordered to rule out the presence of any other hormonal disorders.

Can PCOS be cured?

Unfortunately, there is no cure for PCOS, but that doesn’t mean people diagnosed with the condition must suffer. “PCOS symptoms are very successfully managed with medications and lifestyle changes,” Dr. Peters explains. “Even infertility experienced by PCOS patients can successfully be overcome with treatments.”

How is PCOS treated?

Symptoms of PCOS are treated in a one or a combination of three ways: lifestyle changes, medication, and (rarely) surgery.

Lifestyle Changes

“Lifestyle changes and weight loss are key in the treatment of PCOS,” Dr. Peters says.

“Weight loss and healthy eating are the most effective non-medicinal treatments,” echoes Dr. Cly, adding, “Improvements in PCOS begin with a weight loss of [greater than] 5% of total body weight.  The improvements of the symptoms are even larger with more weight loss.”

In her article for Cedars-Sinai, Dr. Chan recommends patients with PCOS stay active, including 30-40 minutes of exercise three to four days a week. She also suggests adopting a low-carbohydrate diet. “Women with PCOS don’t always process carbohydrates as easily as other women. Too many refined carbohydrates like sugars can lead to insulin resistance and weight gain,” she says.

Medication

“The most common medications are birth control hormones in the form of pills or a patch or ring,” says Dr. Cly, “because those control the menstrual cycles…and they also decrease the amount of testosterone circulating so it will help with the hair growth as well.”

Metformin, a drug primarily used to control high sugar in people with type 2 diabetes, and other diabetic medications are sometimes prescribed for PCOS because they decrease insulin resistance. It is used as an off-label drug as the Food and Drug Administration (FDA) has not approved it for PCOS treatment because the manufacturer did not seek its approval; however with positive clinical research data, it is very commonly used medication. Dr. Cly does not recommend them because long-term studies haven’t shown significant benefit. Dr. Cly specifies one exception, “However, when a woman is trying to get pregnant adding metformin to Clomid or Femara will increase her chances of pregnancy three times higher than with (ovulation stimulating medications) Clomid/Femara alone.”

RELATED: Using Metformin for off-label PCOS treatment

Dr. Cly and Dr. Peters both mention spironolactone as being effective alone or in combination with other medications for reducing male hormone levels; but Dr. Cly cautions that it has a, “rare risk of genital abnormalities in male infants if a woman gets pregnant while taking it.” Hence, patients should be on contraception and blood tests to monitor electrolytes are routinely needed.

For unwanted hair, Dr. Peters suggests eflornithine hydrochloride cream (a topical drug that can be used to inhibit hair growth) as an option in addition to hair removal methods such as waxing, shaving, or electrolysis/laser hair removal.

Dr. Peters also mentions that high cholesterol issues, diabetes, sleep apnea, and fatty liver disease, conditions that often appear in people with PCOS, are treated the same way they would be in a person who does not have PCOS.

For fertility problems, in addition to the medications mentioned by Dr. Cly and Dr. Peters, your doctor may recommend letrozole or gonadotropins.

Letrozole slows estrogen production and causes the body to make more follicle-stimulating hormone (FSH), a hormone needed for ovulation. While a National Institute of Child Health and Human Development–supported study found that letrozole is more effective than clomiphene in causing ovulation and improving live-birth rates, studies of letrozole in animals have shown that it causes birth defects if used during pregnancy. There have been no studies of this drug in pregnant women. It is also an off-label treatment.

Gonadotropins are hormones that cause ovulation. They are given as injections. Because this treatment has a higher risk of multiple pregnancies, your doctor may order more tests and ultrasounds to monitor your body during treatment.

Surgery

PCOS cannot be corrected by surgery, but some surgeries can help with specific PCOS conditions.

“Obesity, diabetes, and metabolic syndrome can, in extreme cases, be managed with bariatric surgery,” Dr. Peters says.

Dr. Cly adds, “Women who lose significant weight after a gastric bypass surgery demonstrate nearly normal periods and normalization of their symptoms.”

Ovarian drilling is a treatment option for infertility associated with PCOS. “Recent studies have shown that Laparoscopic Ovarian Drilling, LOD, (removing some of the extra cystic ovarian tissue) results in a higher pregnancy rate when trying to get pregnant compared to clomid alone,” says Dr. Cly. “However, a very recent study revealed that Femara (letrozole) was just as effective as LOD surgery in achieving pregnancy.  Additionally, surgery does not help improve symptoms or PCOS findings when a woman is not trying to get pregnant.”

What’s promising about PCOS?

While PCOS may be with you for life, the symptoms don’t have to be. “The treatments are extremely successful in suppressing the symptoms,” assures Dr. Cly.

Dr. Chan also offers reassurance: “When you’ve finished menopause, estrogen and testosterone hormones come down naturally, and then PCOS symptoms can improve. Remember that through each stage of the disorder, although we can’t cure it, we can manage the symptoms.”

Studies surrounding PCOS continue to give hope. “It is good to know that there are more answers being investigated and hopefully there will be a cure for PCOS in the not too distant future,” Dr. Cly says.

I still have PCOS and I still need to manage some of my symptoms. I also have two beautiful boys that I conceived without the need for fertility treatments, and a plan in place to control or prevent as many effects of PCOS as I can. A PCOS diagnosis can be scary—as scary as finding a chin hair at a Rolling Stones concert—but it’s common, it’s manageable, and it’s possible to live a full, healthy life with PCOS.