What Is PCOS?

By Elizabeth Lee Vliet, MD
Excerpted and condensed from It’s My Ovaries, Stupid, pgs. 247 – 257 Scribner, 2003

Polycycstic Ovary Syndrome (PCOS): Hormonal Havoc

Polycycstic ovary syndrome (PCOS) has begun to get attention in women’s magazines and physician’s offices. In the past, it was viewed as an “infertility problem,” meaning that it was an issue only if a woman was trying to get pregnant. Young women struggling with other symptoms, such as marked weight gain and acne, were often simply told to eat less and exercise more, and that they were just experiencing “teenage” problems that would go away. But PCOS is far more dangerous and potentially deadly. And it is on the increase in young women today.

PCOS was first described in 1935 and named Stein-Levinthal syndrome after the doctors who noted the characteristic body changes and tiny cysts covering the ovaries. At that time, doctors thought PCOS was a disorder that just affected the ovaries, causing excess body hair, irregular menses, infrequent ovulation, and follicles that don’t develop but become multiple cysts.

In fact, PCOS is the most common endocrine disorder among women in their childbearing years, affecting 6%, or millions, of premenopausal women, teenagers, and prepubescent girls.

The hormonal balance of PCOS leads to a metabolic syndrome with widespread effects that can wreak havoc throughout the brain and body. PCOS dramatically increases a woman’s risk of many serious health problems, beginning in her early teens.

• By age 30, 50% of women with PCOS have blood sugar problems with either impaired glucose regulation, producing too much insulin or insensitivity to the body's own insulin, or full-blown diabetes
• Women with PCOS have and eleven-fold increase of risk of heart (cardiovascular) disease that can appear in their late 20’s and early 30’s
• Women with PCOS ages 39 to 49 have four times the heart attack risk of women without PCOS
• Women with PCOS have a higher risk, at younger ages, of uterine and breast cancers

Some Symptoms of PCOS

• Marked, usually rapid weight gain, often without a change in food intake
• Excess facial and body hair
• Thinning scalp hair or hair loss
• Severe acne, often cystic acne with pimples that become like boils
• Irregular menstrual cycles, or no menses
• Difficulty getting pregnant, or frequent miscarriages
• Mood problems, such as anxiety, agitation, depression, and mood swings that are commonly triggered by excess male hormones like DHEA
• Insomnia, with very restless sleep and/or difficulty falling asleep

What Causes PCOS?

No one is certain what causes PCOS, but there are many proposed explanations, and we will likely find multiple cause that produce the same metabolic syndrome disruption of normal hormonal production.

• Genetic factors
• Environmental factors, such as exposure to pesticides and other endocrine-disrupting chemicals
• Autoimmune disorders — ovarian, adrenal, pancreatic, and thyroid
• Excess insulin production related to obesity-induced insulin resistance
• Excess intake of substances such as excitatory amino acids, found in many food additives like MSG, aspartame, glutamate, etc. that affect the pituitary regulation of the ovary cycles
• Medications that increase prolactin, such as many antidepressants.

Why PCOS Is Often Missed

Tragically, many physicians see PCOS as a “cosmetic” problem when young women complain of excess face or body hair and weight gain. Many physicians do no realize that PCOS has far-reaching and potentially devastating consequences.

Another reason PCOS is overlooked is that gynecologists have traditionally been taught that a hallmark of PCOS is a lack of menstruation (called amenorrhea). Therefore, if a woman is still having periods, even if irregular, she is often told “you can’t have PCOS.”

We now know this is not correct. Many women with PCOS still have periods, they are just irregular and don’t produce optimal levels or normal balance of ovarian hormones, often with quite low estradiol and high levels of DHEA and testosterone. In addition, infertility is the most common reason women with undiagnosed PCOS see a physician. These women may go to a reproductive endocrinologist. But what if they are not trying to become pregnant? Especially, if you still have menstrual periods, you are likely to be overlooked in our current, fragmented approach to women’s health.

Another difficulty is that traditionally, endocrinologists in this country haven’t focused on the ovary, since this endocrine organ is the “turf” of gynecologists. This “split” of a woman’s endocrine system means different doctors address different body parts.

In the United States, endocrinologists focus on other endocrine disorders like thyroid and diabetes. They rarely check ovarian hormones, especially estrogen levels. Gynecologists, on the other hand, are trained as surgeons, and don’t routinely check hormone levels. They do not worry about women with “just a cosmetic problem” of waistline weight gain and excess facial hair. The surgical training of gynecologists focuses on pregnancy and birth, on surgical approaches on surgical approaches to correct gynecological problems like fibroids, endometriosis, and cancers. The problems caused by PCOS just haven’t seemed as important in a busy obstetrical-surgical practice.

PCOS also causes severe mood problems, typically evaluated and treated by psychiatrists. But in this country, psychiatrists are not taught much about the brain effect of ovarian hormones, and rarely check any hormone levels, much less the ovarian ones. The brain symptoms resulting from PCOS hormone imbalances are missed. Even worse, some of the “mood-stabilizer” medicines commonly used aggravate the hormone imbalances of PCOS.

So what happens when all these specialty groups overlook the underlying metabolic changes in PCOS? Women with this very serious disorder are often discounted and simply told “not to worry, everybody misses periods sometimes,” or “just go exercise and lose weight and your periods will come back. You’ll be fine,” or “just take this antidepressant or mood stabilizer and you’ll get better.” This happened to a 35-year-old-woman who went on to have three heart attacks by the time she was 38, and almost died before her serious hormone imbalances from PCOS were diagnosed.

I have another concern about PCOS: The very treatment of PCOS-induced infertility may itself cause more problems. International specialists in the field of climacteric (menopause) medicine have studies showing that certain drug treatments that overstimulate the ovaries, as well as laparoscopic ovarian treatments to remove cysts, can cause premature menopause and a higher risk of ovarian cancer. Women with PCOS have a double whammy: They need specialized treatment to get pregnant, and some of those treatments can lead to serious problems later.

Physician’s Note

Nevertheless, there is a great deal of hope and help for women with PCOS today. You deserve a thorough evaluation that includes detailed measurements of the blood levels of your ovarian hormones, along with other laboratory tests. My book, It's My Ovaries, Stupid!, offers a great deal more information about why so many women today are getting PCOS and what they can do about it. Don’t suffer in silence. There are many helpful treatments available.

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