The Mystery of PCOS
Many people are unfamiliar with the strange-sounding condition of polycystic ovary syndrome (PCOS). From infertility to heart disease, the broad reach of PCOS can intimidate and overwhelm even the most health-conscious women who are up to speed on the connection between their diet, lifestyle, and health. There’s a lot to learn, and a lot we still don’t understand about the syndrome. Common reactions to a diagnosis of PCOS include the following:
• Confusion. What exactly is this condition that has the potential to affect so many aspects of my health, but that many health-care providers seem to know so little about?
• Frustration. Why, after complaining about my symptoms to health-care providers for years, am I just now finding out what this is? (For those trying to get pregnant, the timing couldn’t be worse.) Now I have to figure out how to manage this complex condition in the hope a new diet and lifestyle will help me get pregnant.
• Stress. All the information is confusing, and none of it sounds good. Feeling like I have to change so many things about my lifestyle to get better is overwhelming and even paralyzing.
• Relief. Even though I’m not happy about having PCOS, now at least I know what I’m dealing with.
• Motivation. PCOS could have lasting effects on my health and fertility. I want to get a grip on my symptoms and participate fully in my care.
Although certainly no one hopes for a diagnosis of PCOS, if you’ve finally received the diagnosis, rest assured that this is a condition you can do something about. The diet and lifestyle changes that can help you manage your PCOS are not extreme recommendations. If more Americans in general (both men and women, old and young) adopted these recommendations, we’d see a decline in nearly every chronic health problem: heart disease, diabetes, obesity, high blood pressure, cancer, and possibly many others. Eating well and leading an active lifestyle have such far-reaching effects on one’s health and quality of life: more energy, improved mood, better sleep, improved self- and body image, better sex, and less stress, to name just a few benefits.
A certain amount of the stress many people feel comes from the knowledge that they’re not doing all they can to protect their health. Starting to chip away at the list of things we know we should be doing offers a certain amount of relief in itself. The diet and lifestyle recommendations outlined throughout this book are solid, healthful ideas that anyone can follow. With a diagnosis of PCOS, you just have more of an incentive to make these changes.
The Facts about PCOS
PCOS is the most common female hormonal disorder and the primary cause of anovulatory infertility (infertility caused by lack of regular ovulation). The syndrome has been recognized as having damaging lifelong health effects. PCOS is estimated to affect 5 to 10 percent of all women during their reproductive years. According to the 2000 U.S. Census, there are more than 140 million females in the United States—that’s up to 14 million women who may develop the condition during their lifetime. Research suggests that up to 30 percent of women experience some symptoms of the disorder, referred to as nonclassic or variant PCOS. With the dramatic increase in childhood obesity, which often leads to earlier onset menstruation, PCOS is starting to show up in younger girls. That means more years to live with the damaging health consequences of this syndrome that never goes away. It is a lifelong, chronic condition.
The cause of PCOS is not clearly understood, but it’s believed to be a complex genetic disorder likely involving multiple genes. The genes involved may be those that regulate function of the hypothalamus, the pituitary gland, and the ovaries, as well as those genes responsible for insulin resistance, which is believed to be the driving force for most of the signs and symptoms of the disorder. In fact, women with PCOS experience similar risk for the development of metabolic and cardiovascular problems as those diagnosed with metabolic syndrome, another common and complex health problem that is escalating in the U.S. population and driving the national epidemic of diabetes and heart disease. This makes sense: insulin resistance is a contributing factor in both conditions.1
Depending on the research you read, anywhere from 50 to 80 percent of women with PCOS are overweight or obese. The incidence of PCOS in the U.S. population has paralleled the increase in obesity, suggesting a strong connection between body weight and the severity of the condition. Although obesity has not been identified as a cause of PCOS, carrying around excess weight worsens its signs and symptoms. Women with the syndrome often store fat around the middle, known as visceral adiposity, which basically means that they tend to wrap excess body fat around their internal organs. This type of body fat storage is genetic, known to aggravate insulin resistance, and raise blood pressure and the risk of heart disease.
PCOS can also trigger a host of physical symptoms, most of which are caused by excessive production of androgens, or male-type hormones, like testosterone. The hallmark of insulin resistance is higher circulating levels of insulin, which can have a seriously toxic effect on hormone production in the ovaries. Higher circulating insulin levels increase the release of an important reproductive hormone called luteinizing hormone (LH) from the pituitary gland. Both LH and insulin then stimulate the theca cells in the ovaries to produce testosterone, which is toxic to egg development. Production of testosterone doesn’t make you any less of a woman. All women make some testosterone (and all men produce some estrogen), but in the ovaries estrogen should predominate over testosterone. When excess insulin stimulates a cascade effect where testosterone predominates over estrogen, eggs don’t develop normally.2 Physical signs that androgen levels may be atypical include excess hair growth on the face, chest, and back (male-pattern growth); thinning of the hair on the crown of the head; acne; and a tendency to gain much-maligned “belly fat” (an apple-shaped body as opposed to the healthier pear-shaped body, where body fat is stored more in the buttocks and thighs).
Women with PCOS are also at greater risk of a number of life-threatening chronic health problems. Most concerning is the connection between PCOS and type 2 diabetes. Diabetes is exploding in the U.S. population. Type 2 diabetes has increased 40 percent since the early 2000s. Undiagnosed diabetes is seven times more likely in women with PCOS, compared with similar-age women without the condition. In fact, 30 to 40 percent of women with PCOS have prediabetes (that is, they don’t yet have full-blown diabetes, but they are already showing signs of insulin resistance, which causes type 2 diabetes). As many as 10 percent of women with PCOS develop full-blown diabetes by age forty.3 A recently released report published in the journal Diabetes Care suggests that over the next twenty-five years, the number of Americans living with diabetes will nearly double, increasing from 23.7 million in 2009 to 44.1 million in 2034. Over the same period, spending on diabetes will almost triple, rising from $113 billion to $336 billion, even with no increase in the prevalence of obesity.4
Heart disease continues to be the number-one killer of both women and men in the United States, and women with PCOS have a four to seven times higher risk of heart attack than women of the same age without the syndrome.5 Endometrial cancer is also a risk for women with PCOS. The hormone estrogen triggers the growth of cells that line the uterus, which are usually shed once a month due to the opposing effect of the hormone progesterone. But in cases of PCOS, where periods are inconsistent or absent, the lining of the uterus builds up, raising the risk of endometrial hyperplasia (overgrowth of the endometrium), which down the road may lead to endometrial cancer. Hyperinsulinemia (elevated blood levels of insulin due to insulin resistance) is common in PCOS and can encourage the growth of potentially cancerous cells. If left untreated, research suggests that endometrial hyperplasia advances to endometrial cancer in as many as 30 percent of cases.6
With many women having children later in life, the number of women requiring fertility treatment is also on the rise, and the hormonal changes seen in PCOS have been recognized to be a major player in the world of infertility. If a woman with PCOS does become pregnant, she’s at higher risk of gestational (pregnancy-induced) diabetes, which presents a risk to both the mother and the developing baby. Some research suggests that women with PCOS are three times more likely to miscarry than women without the disorder.
Another threatening aspect of PCOS is that although 5 to 30 percent of women may have PCOS or some of its symptoms, awareness about the syndrome—even among many health-care providers—remains inadequate. The emergence of information on the prevalence of the syndrome is very much like what happened with fibromyalgia and hypothyroidism in the 1990s. Prior to these disorders being recognized as affecting large numbers of women, many women—and clinicians—failed to recognize the symptoms as a collection of complaints caused by one underlying health problem. Today, both disorders are widely recognized as treatable, as is PCOS.
A Historical Look at PCOS
In the medical literature the earliest mention of polycystic ovary syndrome dates back more than 150 years to France, where the first official description of polycystic-appearing ovaries was made in 1845. In the early 1900s a few isolated reports began to emerge describing a procedure called a wedge resection (the removal of a section of the ovary) used to treat cystic changes in the ovaries, but knowledge was still very much isolated to treating the ovarian cysts. An understanding of the systemic reach of the condition was still years away.7 In 1935 the American gynecologists Irving Stein and Michael Leventhal published a paper on their findings in seven women with amenorrhea (the absence of menstruation), hirsutism (excessive thick hair growth in male-pattern areas), obesity, and cystic-appearing ovaries. This was one of the first descriptions of the complex condition known today as PCOS, which at the time was termed Stein-Leventhal syndrome after the trailblazing physicians who had first tied the symptoms together.8 Because of the ovary’s cystic appearance, Stein and Leventhal referred to the condition as polycystic ovarian disease, but as more was learned about PCOS, the term “syndrome” began to emerge.
Although it is appropriately named a syndrome, the fact that PCOS is a syndrome as opposed to a disease contributes to much of the confusion around diagnosing it. What is the difference between a syndrome and a disease? Let’s start by looking at technical definitions of the two terms: a disease is a pathological condition of a part, organ, or system of an organism resulting from various causes and characterized by an identifiable group of signs or symptoms; a syndrome is a group of symptoms that collectively indicates or characterizes a disease or another abnormal condition, the cause of which may or may not be known, and for which no single test is diagnostic.
While these definitions basically sound the same, the difference is in the details. A disease has an “identifiable group of signs or symptoms” that you either have or you don’t. To be diagnosed with a disease, you have to meet all the criteria. A syndrome is different in that there could be a number of signs and symptoms that vary between individuals, and potentially indicate a condition, but not all signs and symptoms have to be met to make a diagnosis. In other words, there may be a list of potential signs and symptoms, and if you have enough of them, your clinician may say you have the condition. (A similar condition is IBS, irritable bowel syndrome, where physicians generally rule out more serious gastrointestinal diseases and end up with a diagnosis of IBS.) It is critical to be evaluated by a physician who’s used to seeing patients with PCOS—his or her clinical judgment and experience seeing hundreds of women presenting with a similar constellation of symptoms may allow the physician to pull together a clinical picture that might not be as apparent to someone with less experience diagnosing the condition. That doesn’t mean all those doctors who missed the diagnosis were bad doctors; they likely weren’t used to seeing a lot of women with PCOS. In their defense, it’s only been since the early 2000s or so that the prevalence and importance of treating this syndrome has come to light.
Symptoms of PCOS and Getting a Diagnosis
A woman may see her doctor for several reasons that may ultimately result in a diagnosis of PCOS. Her menstrual periods may not come on a regular basis—or at all—a condition called amenorrhea. Or she’s been trying to get pregnant without success. She may be experiencing unwanted hair growth, severe acne, or weight problems—all of which are negatively affecting her body image and self-esteem. She may have been diagnosed with some metabolic abnormality, such as elevated blood sugar (glucose), high cholesterol, or high blood pressure, often at a young age. She may just have a feeling that “something isn’t right” with her body, and she’s hoping a doctor can pull it together for her.
Scientists don’t know exactly what causes PCOS. No single factor can account for the array of abnormalities seen in the syndrome, but research suggests that the underlying primary cause in most cases is insulin resistance—a condition that responds strongly to weight loss, exercise, a healthful diet, and medications when necessary. We do know that PCOS is a genetic condition, likely complicated by ovarian and metabolic abnormalities that, when taken together, can create a potential firestorm of health risks. This is particularly true when environmental factors like obesity, an unhealthy diet, and a sedentary lifestyle are stirred into the mix. Further complicating matters, it appears there are different phenotypes or genetically different forms of PCOS.9 Some phenotypes are at higher risk of diabetes and other metabolic problems (those with apple-body obesity and signs of insulin resistance), and others appear at lower risk (thin women with PCOS and no evidence of androgen excess). Women with classic PCOS—those with spotty or absent periods and androgen excess—are more likely to have more severe insulin resistance and other metabolic problems.
There are differing opinions on the criteria for a diagnosis of PCOS. Regardless of criteria used, the first step is to rule out related disorders, such as Cushing’s Syndrome and Congenital Adrenal Hyperplasia (CAH). The main criteria used to diagnose the syndrome tends to run along continental lines, with physicians in the United States preferring criteria set during the 1990 National Institutes of Health (NIH) International Conference on PCOS. European physicians tend to favor the more recent 2003 consensus developed by the European Society for Human Reproduction and Embryology and the American Society for Reproductive Medicine, called the Rotterdam Criteria, named after the city in which the criteria were drafted. In 2006 an international organization called the Androgen Excess and PCOS Society weighed in with their own criteria that attempted to meld together the NIH and Rotterdam Criteria, basically concluding that hyperandrogenism is the cornerstone of PCOS but also conceding the possibility that there are forms of PCOS without blatant evidence of hyperandrogenism that need more study.10
For the 1990 criteria the NIH held an international conference on PCOS and basically took a show of hands on what the audience and speakers thought should be included in the criteria. The consensus was, to be diagnosed with PCOS, after other disorders were ruled out, a woman had to have these two complaints: (1) chronic oligoanovulation (few or no periods) and (2) biochemical or clinical signs of excess androgen (excess hair growth, thinning of the hair on the head, and so on). Interestingly, having polycystic ovaries visible on ultrasound was not required to be present for diagnosis, which was basically a nod to the belief that ovaries were only part of the picture, despite the syndrome’s name.
In an effort to be more inclusive—and to recognize that the diagnosis may be broader than these two criteria—the Rotterdam Criteria expanded the diagnosis of PCOS to women if they met two of the following three conditions: (1) oligoanovulation or anovulation, (2) the clinical or biochemical diagnosis of androgen excess, and (3) polycystic ovaries visible on ultrasound. Because the Rotterdam Criteria uses the presence of cystic ovaries as one of the criteria that can be present to diagnose PCOS, it opens the diagnosis pool up to women with normal periods and fertility but who have signs of androgen excess and polycystic ovaries on ultrasound as well as to women who have irregular periods and polycystic ovaries but no signs of androgen excess. This expanded criterion is believed to increase the number of women who could be diagnosed with PCOS by about 20 percent. Although this categorization sounds confusing, it may clarify the confusion for women who might doubt their PCOS diagnosis because they’re thin (many of the books and online information women read about PCOS suggest they’re more likely to be overweight if they have PCOS) and without signs of androgen excess but have irregular periods and cystic ovaries on ultrasound.
In addition to adding phenotypes beyond “classic PCOS,” the Rotterdam Criteria includes many more women who have milder PCOS symptoms and are less likely to be overweight, many of whom are probably less affected by the metabolic abnormalities (insulin resistance, high cholesterol, and so on) seen in classic PCOS. The 2006 Androgen Excess and PCOS Society criteria are worth mentioning, although they don’t change the picture much. Their position accepts the NIH criteria with some modifications based on the concerns of the Rotterdam Criteria, basically concluding that hyperandrogenism is the cornerstone of PCOS but also conceding the possibility there are forms of PCOS without blatant evidence of hyperandrogenism that need more study. Acknowledging the criteria will evolve over time as new findings emerge, they officially concluded that until more is known, all three of the following criteria should be present to diagnose PCOS: (1) hyperandrogenism (excess hair growth and/or blood tests suggesting high androgens); (2) ovarian dysfunction (lack of regular periods and/or polycystic ovaries); and (3) exclusion of other androgen excess or related disorders.
Particularly if you’re looking for a reason not to have PCOS, it can be overwhelming and confusing. But identifying all these different “types” of PCOS begs the question, do we treat women who have a diagnosis of PCOS but who don’t have all the classic signs and symptoms the same? And what about the fact that gaining or losing weight could move a woman in and out of criteria because of its effect on ovulation and androgen production? Until we know more about the degree to which these less-classic cases of the syndrome may be affected by insulin resistance—the primary abnormality affecting women with PCOS—the prudent thing to do is to assume some increased risk and fine-tune diet and lifestyle accordingly. If we look at irregular periods, excess androgens, and polycystic ovaries as three variables to be mixed and matched, it’s possible there may be differences in how women should be treated based on their life and health goals. Scientists say some degree of insulin resistance can be assumed once someone’s Body Mass Index (BMI) drifts over 30 (the clinical definition of obesity). According to a 2005–2006 survey from the Centers for Disease Control and Prevention (CDC), 35.3 percent of women in the United States are obese—all of whom would benefit from the information presented in this book (even without a diagnosis of PCOS).
The Clinician and PCOS Diagnosis
It’s important to be fully evaluated by a health-care provider who has considerable PCOS experience. This may be your primary care provider—be it a medical doctor, a physician’s assistant, or a nurse practitioner—or an endocrinology specialist. According to PCOS expert Dr. Samuel Thatcher, in no other gynecological condition is a thorough medical history more important than in PCOS. Knowing what questions to ask—and a willingness to listen as you tell your story—is critical to helping piece together whether you have PCOS. No one knows your history better than you. You’re looking to form a partnership, so don’t settle for being brushed aside by a busy clinician looking to cut to the chase. The sidebar on page 18, written by reproductive endocrinologist Dr. Alison Zimon, includes information on obtaining a comprehensive medical evaluation for PCOS. Zimon outlines the type of information your doctor will gather from your medical history and physical exam as well as the tests you might expect and medications that might be helpful depending on your circumstances.
Using Medications to Manage PCOS
My goal is to help you manage your health and hormones as naturally as possible through diet and lifestyle change (by boosting activity, taking sensible supplements, managing stress, and so on). But despite your best efforts, sometimes medications are needed to help regulate your menstrual cycles, control your symptoms, manage your health risk factors, or just to help you see your way clear to what needs to happen to get better. Medications can be used as an ally on the road to better health. Some problems, like hypothyroidism, don’t respond to diet or exercise. Or perhaps what’s happening with your health has been going on for a while and has progressed to the point where you need to start medications to get better. Maybe you’re showing signs of prediabetes, and medications may help reduce the risk of progressing to full-blown diabetes.
There is also the possibility of starting out on medications you may be able to wean off of down the road, as the effects of diet and lifestyle change take hold. Or you may only need medications temporarily (to increase your odds of getting pregnant, for example). But medications can never compensate for a lousy diet and sedentary lifestyle—that is, you can’t take meds instead of making diet and lifestyle changes and expect to get the optimal results from the medications. Many people with diabetes have run through a long list of oral agents to manage the disease, only to eventually end up on insulin. Sometimes, try as you might, things turn out this way, but there’s a lot we can do to keep our dependence on medications to a minimum.
Medications used to treat PCOS tend to fall into several categories (see the table below): insulin sensitizers, hormone regulators, symptom management meds, lipid (cholesterol)-lowering meds, and blood pressure regulators.
Preparing for the Doctor’s Visit
In today’s health-care environment, many physicians are crunched for time. Be sure to bring anything to the appointment that outlines your past medical history and specific concerns. Make a list of all the potentially important pieces of the puzzle for the PCOS expert to analyze. This greatly facilitates the gathering of information and helps the clinician develop a clear picture of what’s been happening and what your goals are. Gather the following information ahead of time:
• Menstrual history. How old were you when you got your first period? What has your menstrual pattern been like? Are there any previous pregnancies, and if so, how many?
• Weight history. If you are currently overweight, did your weight change significantly in a short period of time? Has your weight been a challenge all your life, or has managing it become more of a problem recently?
• Family history. Are there diabetes, heart disease, cancer, history of fertility problems, or weight issues in your family?
• Medications and/or dietary supplements. Include everything you are taking as well as the doses.
• Previous tests. If available, bring along the results of previous blood tests, ultrasounds, and so on.
The first thing that will generally happen in the diagnosis process is that the doctor will look to rule out other explanations for your health complaints. These might include such disorders as hyperprolactinmeia, nonclassic congenital adrenal hyperplasia, or Cushing’s syndrome, a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. The doctor will weed through three different types of information: the symptoms and a physical examination, a variety of blood tests, and other test results. What exactly is he or she looking for?
Women with PCOS typically get their periods around the usual age of twelve to thirteen, but it’s not uncommon for a young woman to make her first trip to the gynecologist because she hasn’t gotten her period at all. Menstruation may start out regular, but by the mid-teens cycles may start to lengthen or be skipped altogether. Frequently, birth control pills are prescribed to regulate this, but this doesn’t mean the PCOS is gone. The symptoms are just being overridden by the hormones in the oral contraceptives. During the teen years skin problems seen in women with PCOS may also start to kick in (although acne in general isn’t unusual during the teen years).
Because oral contraceptives regulate hormones, and therefore many of the signs and symptoms of PCOS, it’s not unusual for a woman to think all is well—until she goes off her birth control pills for one reason or another and then she doesn’t get her period. Although some women with PCOS have fairly regular twenty-eight-day cycles, PCOS should be suspected in anyone with cycles that last longer than thirty-five days. Those women without periods will often be given medications (like progestin) to trigger the onset of a period. Age at menopause is believed to be the same for women with and without PCOS.
Skin and Hair Problems
Skin problems in women with PCOS are extremely common, brought on by increased levels of male hormones (androgens). Androgens increase production of sebum (an oily substance secreted by the sebaceous glands in the skin), which increases inflammation and bacterial growth in the skin, causing acne. Seborrhea (flaky skin) and hidradenitis suppurtiva (inflammation of the sweat glands in the armpit and groin) are also common in PCOS, as is a particularly telling skin sign called acanthosis nigricans (AN). AN is a skin condition characterized by velvety, raised, pigmented skin changes most commonly seen on the back of the neck, armpits, groin, and beneath the breasts. AN is often described as the skin “looking dirty,” but the discoloration can’t be scrubbed off. Skin tags are also often present. AN is frequently a skin symptom of insulin resistance and is more common in dark-skinned people.
Another major PCOS sign that can be particularly annoying is hirsutism. All manner of expensive or uncomfortable therapies exist to deal with this hair growth (laser, electrolysis, waxing, shaving)—most women will do whatever it takes—as do some medications (that either treat the underlying hormonal problems or the hair growth itself). As if growing facial hair wasn’t upsetting enough, some women also experience hair thinning on the crown of the head similar to male-pattern balding. For many women a full head of hair is vital to their self-esteem, and losing it, particularly during the reproductive years, can result in nothing short of panic! The mechanism isn’t completely understood, but hormones are the likely culprit. Hair loss may improve with treatment of the underlying insulin resistance. I remember one patient who started taking metformin, a medication to manage insulin resistance, and a multivitamin at the same time; she commented that the vitamin seemed to be making her hair grow thicker. The more likely explanation, however, was that her insulin levels were improving on the metformin, causing a drop in her androgen levels. Other medications exist to help mediate hair loss for women with PCOS.
Being overweight or obese is commonly associated with PCOS, but which comes first, the chicken or the egg? Likely, it’s a little bit of both—depending on individual circumstances. Research cites some widely fluctuating numbers on this, but it appears that between 50 to 80 percent of women with PCOS are overweight or obese. And they tend to carry much of their excess weight as abdominal fat (the apple versus the pear body). This is particularly damaging to overall health because of its association with a greater risk of diabetes, hypertension, and cardiovascular disease. Certainly, there are both lean and obese women with PCOS, but obese women are more likely to be harmed by the syndrome’s health implications. Likely because of a slew of metabolic derangements, many women with PCOS gain weight very easily and struggle more to lose it. Understandably, they feel frustrated, particularly when a physician stares at them cynically when they’ve reported having “really tried” to lose weight without results!
Obesity is so common in the United States (some scientists have called ours an obesity-promoting culture) that it’s difficult to separate how much of a woman’s weight problem might be due to PCOS versus the contributing factors tied to weight gain in the general population. Women with PCOS are exposed to the same influences we all are, but they may be more susceptible to their harmful effects. These realities include the following:
• Too little daily physical activity.
• Too few occupations that require “heavy lifting,” contributing to progressive loss of muscle mass over time.
• Food portions that are too large given many people’s sedentary lifestyle.
• Too much access to calorie-dense junk food that is loaded with calories but provides little to no nutritional benefit.
• Low intakes of whole fruits, vegetables, and whole grains, which fill you up without weighing you down with calories.
• Too little attention to the importance of eating on a regular basis, resulting in reactive overeating (usually in the evening) because we’re starved when we finally get around to it!
• Too much sugar and other processed carbohydrates that shoot your insulin levels up and down, resulting in subsequent increased cravings for more sugar.
This last point presents a particular problem for women with PCOS because they often overproduce insulin anyway, and eating too much sugar and refined carbohydrates is like pouring lighter fluid on a fire. It creates an ever-increasing demand for insulin in a body that’s already having trouble managing it. Some of the metabolic derangements seen in PCOS can encourage the deposition of body fat and trigger mood swings and blood sugar fluctuations that can set the stage for overeating. Among its many functions, insulin resistance tends to jog your appetite, particularly for carbohydrates. Trying to control hunger without controlling insulin response is likely to be a futile exercise in willpower.