A woman usually learns that she has polycystic ovary syndrome (PCOS) because of irregular periods, infertility, or skin and hair problems. Unfortunately she may never learn that PCOS puts her at increased risk for cardiovascular disease and diabetes. Receiving the right medical care can greatly alleviate the symptoms and serious dangers of the condition.
The approximately 6 million American women who have PCOS have ovaries that secrete excessive amounts of male hormones (mostly testosterone) into their blood. A polycystic ovary is one with many cysts—the remains of follicles that never released mature eggs. But polycystic ovaries are a symptom or sign of the problem, not the cause. Three out of four women afflicted with this kind of infertility and other symptoms do not know that PCOS is the cause. Many are misdiagnosed. Some women who come to my office have been suffering from their symptoms for years without a correct diagnosis or proper treatment. This is all the more sad because effective treatments for PCOS symptoms exist and are readily available. Considering the possible diabetic, cardiovascular, and other serious consequences of untreated PCOS, early diagnosis and immediate treatment can be of life-saving importance.
In this chapter, I’ll encourage you to take a PCOS quiz and then I’ll describe the condition’s telltale symptoms. Look at the basic health problems involved in the condition. This should enable you to make a realistic self-assessment of whether to take the next step, which is to find a medical specialist who can make a reliable diagnosis. At the end of this first chapter you should be able to understand and discuss your health problems in a new light.
You probably have already heard about PCOS and have reasons to think this condition could be responsible for your health or appearance problems. To confirm or deny your suspicions with certainty you will need a medical diagnosis from a specialist, and we discuss that process in chapter 5.
Polycystic ovary syndrome (or polycystic ovarian disease, as it was called until about twenty years ago) was originally named the Stein-Leventhal syndrome, after two Chicago gynecologists at the Michael Reese Hospital, Irving F. Stein and Michael L. Leventhal. In 1935 they published their observations of the presence of large, polycystic ovaries in women with an absence of menstrual cycles, increased body hair growth, and infertility. Portions, or wedges, of ovarian tissues were sometimes surgically removed in what were known as wedge resection biopsies. Women who had such biopsies of both ovaries started to have regular menstrual cycles, and some conceived. This procedure helped regulate the menstrual cycle and enhanced fertility for a year or two, but then irregular periods and infertility problems returned. In the early 1960s the procedure was discontinued.
If you haven’t heard much about this syndrome until very recently, that’s most likely because many women and some health professionals may not be familiar with it, not because the condition is rare. Let’s start with a few simple questions.
PCOS QUIZ
The big question, of course, is whether you have PCOS. You probably have symptoms that lead you to think you might have the condition. This quiz narrows down the really important questions you need to ask yourself. But that is all the quiz does. Even if you answer yes to every one of these questions, this does not guarantee that PCOS is the cause of your symptoms.
The twelve quiz questions focus on three common problem areas.
IRREGULAR MENSTRUAL PERIODS
1. Do you have eight or fewer periods a year?
2. Have you ever gone four months or longer without having a period?
3. Do you have irregular bleeding or spotting?
4. Are you having trouble conceiving?
SKIN AND HAIR PROBLEMS
5. Do you have excessive hair on your face and body?
6. Do you have severe adolescent or persistent adult acne?
7. Do you have thinning scalp hair?
8. Do you have skin tags or velvety, dark skin patches on the nape of your neck?
WEIGHT PROBLEMS
9. Have you recently had a significant weight gain?
10. Do you carry excess weight around your waistline?
11. Do you feel sugar cravings, drowsiness, and sometimes light-headedness within the first few hours after a meal?
12. Do you or any close family members have type 2 diabetes?
Answering yes to five or more of these twelve questions means that you need to seek a diagnosis. If PCOS is not the cause of your problems, something else is. You need professional help.
Answering yes to even one of these questions should alert you to a possible developing health problem. Don’t wait in hope that the symptom will disappear in time of its own accord. Perhaps it will, but why wait? It’s certainly worth discussing with your doctor.
Janet’s health problems began at the age of twelve, with her first period. Throughout her teens, her periods were erratic, occurring only every two or three months, and the bleeding lasting two to three weeks each time. Doctors could find nothing wrong with her. She continually suffered from minor ailments that disappeared in time, only to reappear or be replaced by others. One doctor thought that depression might be the underlying cause of her physical ailments and sent her to a psychiatrist. She developed high cholesterol and weight problems in her late twenties.
Finally a doctor diagnosed Janet with PCOS and explained how it led to erratic periods and unwanted facial hair. Unfortunately the doctor didn’t warn her about weight gain and other health problems. At times, she had feelings of uncontrollable hunger. At other times, the smell of some foods could make her vomit. Janet often found that she couldn’t stand the presence of certain people, even though they had done nothing to justify her feelings against them and she knew she would feel differently about them again in a few days.
It didn’t occur to her for a long time—until she joined a support group—that these problems might be associated with PCOS.
Polycystic ovary syndrome is not a disease in the sense of a single malady, but rather is a combination of various symptoms that share an underlying cause. Some women have only a few symptoms, while others have many. Your symptoms may also vary in degree and intensity.
The following are the most important symptoms to look for. Although symptoms vary from one woman to the next, all women with PCOS experience at least some of these symptoms.
• Irregular periods
• Excessive hair growth on face and body
• Scalp hair thinning
• Acne
• Excess weight, sugar craving, and inability to lose weight (plus abnormal blood lipid levels and a tendency to an apple shape)
• Darkening of skin areas, particularly on the nape of the neck, known as acanthosis nigricans
• Skin tags
• Gray-white breast discharge
• Sleep apnea
• Pelvic pain
• Depression, anxiety, sleep disturbances, and other emotional disorders
You may have blamed these symptoms on your metabolism or assumed (as some of my patients do) that they were a family trait. Some women put up with their symptoms for years, until they decide want a baby and have trouble conceiving. Or they seek professional help when their skin and hair problems become so embarrassing. Other women diligently seek professional help but are repeatedly misdiagnosed.
When I organized and chaired the Polycystic Ovary Syndrome Association (PCOSA) Annual Conference in San Diego in 2000, I was struck by the great number of women there in search of answers and appropriate treatment. Those I spoke to told the same story again and again: They had been suffering from their symptoms for years and—perhaps like you—they were done waiting for help to find them. They were ready to take control.
Understanding how ovaries function in a normal menstrual cycle is essential to understanding what happens in PCOS. The ovaries are among the first organs formed in a developing female fetus. A female fetus twenty weeks old has a whopping 6 to 7 million egg cells. At birth, that number has declined to between 1 and 2 million, and at puberty, a girl has about 300,000 eggs cells. During a woman’s reproductive years, about 300 of those egg cells develop into mature eggs. For every one that matures, about 1,000 do not. By menopause, just a few thousand egg cells remain.
When a girl reaches puberty, the sex hormones begin to activate some of her hitherto inactive egg cells. In each menstrual cycle, about twenty eggs in one ovary become activated. Each ripening egg develops in a fluid-filled sac, surrounded by a sheath of support cells collectively called a follicle. Only one of the twenty or so follicles becomes dominant and continues to ripen until the egg is mature, while the other follicles whither. At ovulation, the dominant follicle ruptures and the egg is released and travels through the fallopian tube to the uterus.
The “cysts” of PCOS are dominant follicles that never released their eggs and remain embedded in the ovary. Even when their periods are regular, women with PCOS often have menstrual cycles without ovulation, that is, without the dominant follicle rupturing and releasing its egg. These are called anovulatory cycles.
Why doesn’t the dominant follicle release its egg? A higher than normal blood level of male hormones, mostly testosterone, is probably responsible. So what makes the ovaries secrete more male hormones than normal into the bloodstream? Many experts believe a high blood level of insulin is the culprit; in a few pages we will look at other possible causes.
Let’s look briefly at how hormones regulate the menstrual cycle. Some of this will be familiar to you from biology class, but it’s probably been a while since you’ve focused on the details. For egg release or ovulation to occur, a menstrual cycle must take place. The cycle is initiated and regulated by hormone-secreting organs in the brain. The cycle begins with the hypothalamus signaling the pituitary gland to produce follicle-stimulating hormone (FSH), which stimulates growth of the egg follicles as well as estrogen secretion by the ovaries. Blood-borne estrogen travels to the uterus and thickens its lining (endometrium). The rising estrogen blood level signals the pituitary to reduce FSH secretion. This in turn causes the ovaries to secrete less estrogen into the bloodstream. The rising estrogen blood level also causes the pituitary to produce a surge of luteinizing hormone (LH). In a healthy woman, LH causes the dominant follicle to rupture and release its egg. In other words, the woman ovulates.
After ovulation, the ruptured follicle becomes the corpus luteum (yellow body), secreting estrogen and progesterone to build up the uterus lining. If the egg is fertilized, it becomes embedded in this lining.
When the egg is not fertilized, the rising progesterone and estrogen blood levels signal the pituitary to stop secreting LH and FSH. This results in a lowering of the progesterone and estrogen blood levels, which can no longer maintain the uterus lining. The lining is shed in menstruation, marking the end of the cycle.
The reduced FSH blood level causes the hypothalamus to signal the pituitary to secrete more of this hormone, and the cycle begins again.
A number of problems can prevent adequate hormonal signaling in this complex process. For example, secretion of the hypothalamus must be in a critical range to stimulate the pituitary to secrete FSH and start the menstrual cycle. This can be inhibited by stress and anxiety, eating disorders, and acute weight loss. Other problems can lead to a lack of ovulation (anovulation), few menstrual cycles (oligomenorrhea), or an absence of cycles for many months (amenorrhea).
Research shows that carrying extra pounds can also throw a wrench into the works. Hormone precursors to estrogen may be metabolized in fat cells. This takes place in direct proportion to body weight and is important in the well-known association between obesity and frequent anovulation.
Scientists and practicing clinicians have multiple theories about how polycystic ovaries and the polycystic ovary syndrome originate. That’s not surprising when you consider the complex interaction of hormones involved in a normal cycle. Any disruption in the process leading to ovulation may lead to the same result: an ovary that doesn’t release an egg. Keeping in mind that PCOS is not a disease but a series of symptoms and signs, it makes sense that different sets of symptoms may indicate different causes.
Although PCOS is the most common hormonal syndrome in women of reproductive age in the world, there is much controversy about its origin and cause. There may be more than one cause, and this would account for why symptoms vary so widely. Potential causes include almost any defect that can cause excessive male hormone production and consequent (but not invariable) anovulation. Some women may inherit a predisposition to PCOS. If a woman vulnerable to it rapidly gains weight, that may be enough to trigger the syndrome—or make already irksome symptoms more severe.
The following proposed causes of PCOS are generally accepted as the most likely.
1. A defect in the hypothalamus leading to exaggerated LH pulses that stimulate the ovaries to secrete more than normal amounts of male hormones.
2. A defect in the ovarian production of testosterone and other male hormones due to abnormal enzyme action on the pathways leading to testosterone.
3. High insulin levels (hyperinsulinemia) as a result of insulin resistance, which further strengthens the effect of LH on the ovaries (see number 1).
4. Genetic causes: Forty percent of women with PCOS have a sister with PCOS, and 35 percent have a mother with PCOS.
We look now at PCOS symptoms in more detail. Hormonal conditions other than PCOS can also cause these symptoms, and such diseases, which are often easy to confuse with PCOS, will be discussed in chapter 5.
With regular periods a woman sheds the lining of her uterus (endometrium) about once a month. For most women a cycle is twenty-eight days, but a normal cycle can be as short as twenty-one days and as long as thirty-five. An individual woman’s cycle is usually of consistent length, unless interrupted. Her menstrual period is also usually consistent in length, from three to six days.
Nearly all women have periods by the age of sixteen. Not having periods is known as amenorrhea. Pregnancy, overly strict dieting, and major weight loss can temporarily suspend your periods. For example, women with anorexia nervosa do not have periods. By upsetting hormonal process of the menstrual cycle, extreme exercise, high stress levels, or use of corticosteroids and other drugs can have the same effect, as do thyroid, adrenal, and pituitary troubles.
Cycles longer than thirty-five to forty days fall outside the normal range, but before you chalk that up as your first PCOS symptom, you need to consider whether any of the causes just mentioned could be responsible. You also need to take into account that some women have irregular periods as part of their normal physical being. Many adolescents and women nearing menopause have irregular periods. A lot of travel causes this in some women. You need to eliminate as many of these possible causes as you can before looking at PCOS.
That said, they are a characteristic and early symptom—for example, most girls with PCOS have irregular periods within a few years of their first menstrual cycle. Martha, at seventeen, had never had more than four periods a year since reaching puberty at the age of twelve. For the first few years she had thought nothing of it—quite a few of her classmates also had irregular periods. Over time, when her friends became regular but Martha did not, her mother became concerned. Martha was an only child, her mother explained, because of her own irregular periods and difficulties conceiving.
To help your doctor assess your situation, you need to keep careful written records of the dates and durations of your menstrual cycles, as well as any premenstrual symptoms such as bloating, pelvic discomfort, body swelling, and irritability.
Women with PCOS typically have five to nine menstrual cycles a year, with intervals averaging forty to sixty-five days. Menstrual flow usually lasts four to six days. Most women with PCOS have no discomfort prior to or during the early phase of menses. Some women, however, complain of bloating, breast discomfort, mood changes, or lower abdominal distress at that time, and this can vary from cycle to cycle.
Normal twenty-eight-day intervals between menstrual flows may alternate with intervals longer than forty to ninety days. At times, a woman with PCOS may have almost regular cycles for some months.
The fact that her menstrual cycles are regular does not necessarily mean that a woman with PCOS is ovulating. On the other hand, she may ovulate at times and even become pregnant. About one in four women with PCOS have frequent episodes of regular menstrual cycles from the onset of puberty. At one time it was thought that if a woman had regular periods and could conceive, she did not have PCOS. Most specialists today, however, would not exclude the possibility because of regular periods.
You may develop a heavy menstrual flow, sometimes with clots and prolonged bleeding. This is known as dysfunctional uterine bleeding and is more likely to occur in overweight women. Normal bleeding does not include clots and ceases after a few days. Since it can cause anemia or may be a sign of other problems related to PCOS, dysfunctional uterine bleeding requires investigation. In view of the absence of ovulation in most women with this kind of menstrual flow, the uterus’s lining may become thickened and predispose them to more serious conditions. Your gynecologist should order an ultrasound study of your pelvis to note the degree of endometrial thickness. Other tests may be required to exclude the possibility that your symptoms aren’t signs of hyperplasia, polyps, or the rare possibility of uterine cancer.
The regularity of your menstrual cycle can be greatly improved with diet (see chapters 6 and 7) and exercise (see chapter 8) and with the insulin-sensitizing drug metformin (see chapter 9).
Excessive hair growth, known as hirsutism, is one of three ways in which excessive levels of male hormone affect the hair follicles of women with PCOS. The other two are acne and thinning scalp hair. Any one of these symptoms can be a major blow to a woman’s self-image.
Women in some ethnic groups tend to have mild hirsutism, particularly on the upper lip, around the breast areolae, and on the lower abdomen and extremities. In other ethnic groups, women have little tendency to facial or body hair. You may need to take your own ancestry into account before deciding on whether you have excessive hair growth.
When a girl has unwanted facial and body hair prior to the onset of puberty, it strongly indicates that she may have PCOS or an adrenal hormonal disturbance. This indication is further strengthened if the hair growth continues to progress into the mid-teens and beyond. You may wish to ask your mother if she noticed that you had early hair growth and, if so, at what age it began. Rose Ann learned that her mother and her sisters all had what they referred to as “a family problem.” Over the years they had worked out various effective ways to get rid of their unwanted hair, but it hadn’t occurred to any of them that a medical problem might be involved.
When excessive hair growth is caused by elevated male hormone levels, the hairs are usually somewhat thicker and darker, and grow back rather quickly. This kind of hair growth is especially common on the chin and lower sideburns, the front of the neck under the jaws, the upper back and shoulders, the upper chest, the upper abdomen, the lower back, and in a wide band across the pubic area including the sides and upper area of the thighs. Please note that excessive hair growth can also be caused by an increased response of hair follicles to normal levels of male hormones. Oversensitive hair follicles are often genetic. If such hair growth is not accompanied by menstrual irregularities, it does not alone signify that you have PCOS.
Before you blame PCOS for your excessive hair growth, you need to exclude several other medical conditions as possible causes. A sudden, rapid rate of new hair growth can be caused by other hormonal disorders of the adrenal glands, ovaries, or pituitary gland. Some of them are related to benign growths, called adenomas. Your doctor also needs to consider whether drugs are responsible. Such drugs include cortisone-containing drugs, long-term skin application of steroids containing a cortisone derivative, cyclosporine, Accutane, and some earlier oral contraceptives on the market that may promote male hormone-like activity.
A combination of excessive facial and body hair with irregular periods is a strong indicator that you have PCOS. Once you are diagnosed, help is on the way. There are safe techniques to remove unwanted hair, and medications are available to reduce excessive hair growth. I talk about them both in chapter 9.
Hair loss (alopecia) is usually an inherited trait in men and takes place gradually in what is known as male-pattern baldness. This kind of hair loss is rare in women, but can be caused by a male-hormone-producing ovarian or adrenal tumor. As a woman ages she often loses some hair from all over the top of her head. Some women lose a lot of hair after childbirth, but the loss is temporary and the hair thickens, returning to normal in six months to two years. Radiation and chemotherapy can cause temporary baldness. Thyroid disorders and anemia can cause hair thinning. Lupus, alopecia areata, and bacterial infections can cause bald patches. These causes and some others need to be eliminated before your doctor diagnoses PCOS as the cause of your thinning scalp hair.
The following possible causes also need to be considered:
• Genetic predisposition
• Nutritional effects of rapid weight loss or long-term reduced intake of animal fats or essential vitamins and minerals
• Pulling at your hair, sometimes as an unconscious habit (trichotillomania)
• Any tugging force on your hair, such as styling, that can cause hair to be pulled out at the roots
• Cortisone-like medications and topicals, beta blockers (such as Inderal), male-hormone-promoting oral contraceptives, phenothiazines (such as Compazine), and topical chemicals for the scalp
• Dermatitis or psoriasis
• A premature reduction of estrogen production by the ovaries, starting at age thirty-five to forty
• Various medical conditions
By now it’s clear you can’t assume that you have PCOS simply because you have thinning scalp hair, although in rare instances it appears as the only symptom. Typically, though, it is accompanied by other symptoms, such as excessive facial and body hair or irregular menstrual cycles. Virginia was thirty-two when she first noticed that her scalp hair was thinning. She started noticing unwanted facial and body hair in her teens and could hardly believe the cruel joke that nature was now playing on her. She had hair where she didn’t need it and was losing it where she did.
You may first notice male-hormone-related thinning scalp hair as a change in texture. Your hair may become less curly and feel finer to the touch. You may also notice increased hair loss in the shower. Only after you lose 15 to 20 percent of the hair on your head will you see the difference. Much of the hair loss occurs seasonally, in the spring and fall. Although hair loss and re-growth are a normal process, this balance is upset when you begin to lose more than 100 to 150 hairs a day. As you can imagine, there’s not much point to counting lost hairs. It will only add to your emotional distress.
Thinning scalp hair due to high male hormone levels tends to be in the midline (vertex) area, and is often first noticed in the frontal hairline extending to the crown area of the head. It appears like a widened hair parting. I have called this the “triangle sign.” While there may be some recession of hair above the temples, the hairline remains unbroken (an important sign of PCOS). There is only minimal hair thinning above the ears and upward, unless your hair loss problem has more than one cause. It’s a good idea to see a dermatologist, as well as an endocrinologist, for evaluation of this very distressing symptom. I will look at ways to combat thinning scalp hair in chapter 11.
Although acne can occur at any age, you are most likely to have this skin condition when you are going through adolescent hormonal changes. If the acne is severe and resistant to dermatologic treatment, high male hormone levels are often responsible. Menstruation, pregnancy, some oral contraceptives, and other things that upset the balance of male hormones can trigger acne. Girls in their teens often have a flare-up a week before their periods. Acne usually clears in the late teens or early twenties, a little earlier for young men than young women.
The sebaceous glands, which are part of a hair follicle, secrete oil called sebum. This oil works its way upward through the follicle and is released through the skin pore that forms the opening of each follicle. Acne occurs when the pore becomes blocked by an oil plug carrying dead cells and bacteria. If it also contains the pigment melanin, the plug may appear as a blackhead. The plugged follicle swells and ultimately bursts. Having a number of such plugged follicles—usually over the lower third of your face but sometimes on your back or chest—constitutes acne. Increased male hormone levels stimulate oil secretion, which in turns leads to more plugged pores.
As long as the plugged follicles do not become inflamed, the acne remains mild and usually clears without leaving any scars. When acne becomes inflamed, it is often due to bacteria inside the follicle that feed on the oil. They excrete fatty acids that can be an irritant. Normally this is not a problem, because the oil exiting from the skin pore carries the fatty acids with it and they are washed away from the skin surface. When the pore is blocked by a plug, though, the fatty acids can cause the follicle to become inflamed, resulting in a pus-filled cyst. (The use of the word cyst here has no connection to the cysts of a polycystic ovary.) On healing, severe cystic acne can leave permanent skin scars.
So many adolescents have mild acne as they undergo hormonal changes, it could almost be called a normal skin condition for that time of life. Only when acne is severe or persists beyond the late teens, early to mid-twenties, or even later can it be said to be a likely PCOS symptom. In contrast with the mild form, severe acne is uncommon. Less than one in 100 hormonally normal Caucasian women age eighteen to twenty-one suffers from severe acne. Occasionally girls of age eight or nine who have severe acne and hirsutism are later diagnosed as having PCOS or another male-hormone-related condition. When acne shows signs of becoming inflamed, whatever the cause, I suggest seeking prompt help from your doctor.
Cheryl’s friends teased her about being a perpetual teen at the age of twenty-nine! She ignored their ribbing, being fully mature in matters other than her skin. She washed her face frequently with soap and water, used hot compresses, applied astringents to remove excess oil, and avoided touching her face with her fingers. These measures helped prevent the acne pustules from becoming red and inflamed. But they didn’t stop new ones from developing. She needed to take additional measures for that, which I’ll discuss in chapter 11.
Being overweight and unable to lose weight is often the main complaint of women with PCOS. They often carry extra pounds around their midsections in what doctors call a central distribution of excess fat. This apple shape is typical of insulin resistance. “I don’t want to be shaped like an apple,” Kathleen told me. “I try to cut back on food, but when I don’t eat, I become nauseated and dizzy. I eat again to make it stop.”
Excess weight and insulin resistance are inextricably intertwined. A significant weight gain is frequently associated with worsening PCOS symptoms, insulin resistance, and the insulin resistance syndrome that also puts these women at greater risk for heart disease and diabetes (see chapter 4.) Their desire for sweet foods can become almost compulsive. Sweet, sugary foods are quickly converted to blood sugar and are soon processed in your body. You soon feel hungry again, or even hypoglycemic. High-carbohydrate meals are those most likely to have this effect, particularly those rich in simple sugars, starches, and processed grains. The remedy lies in balancing such meals according to the PCOS Diet Program, in chapter 6.
About one in ten overweight women with PCOS have a subtle darkened skin area that is velvety in appearance and feel. The skin area may also be bumpy, irregular, or raised. Such areas most frequently occur on the nape of the neck, in the armpits, and in skin folds under the breasts or around the pubic area. African-American and Latino women most often have this skin condition. A family member who notices these patches may mistakenly believe that the affected area needs simply needs a proper washing. Some teenagers are ridiculed by their peers. That was more or less what happened to Giselle when she developed acanthosis at the age of twenty-seven. In response, she avoided clothes that revealed the neck area affected and wore a silk scarf.
These darkened skin areas can be lightened significantly through weight loss and treatment to lower insulin levels. Although acanthosis nigricans is a PCOS symptom, having it does not necessarily mean that you have PCOS. Insulin resistant women without PCOS can have this skin condition, as well as some women with benign pituitary adenomas.
Pale or dark brown skin tags are a sign of excess insulin and imply that the person who has them is insulin resistant. A woman who has them does not necessarily have PCOS, but she is likely to be affected by hyperinsulinemia if she is younger than forty years of age. Skin tags, which are benign growths, are often associated with acanthosis nigricans.
Roni’s skin tags appeared in her armpits and on her neck after she turned forty. She clipped off one skin tag with her nail scissors and developed an infection at the site. After that experiment gone awry, she got professional help: Her dermatologist removed them.
PCOS can cause a gray-white breast discharge. Such a discharge is also caused by excess secretion of the breast milk hormone prolactin by the pituitary gland. There are other potential causes, with a pituitary disorder at the top of the list. Excess prolactin secretion can also be caused by antianxiety and antipsychotic drugs.
When Allison first noticed her breast discharge, she was delighted because she took it as a sign that she was finally pregnant. Then her doctor gave her the disappointing news. However, the discharge alerted the physician to PCOS as a possible cause of her infertility.
Sleep apnea is caused by repeated collapse of the pharynx airway during sleep. A sufferer wakes repeatedly throughout the night—that’s the body’s fail-safe mechanism for restoring normal breathing. Needless to say, it leads to daytime sleepiness as well as lower mental performance and reduced quality of life. It may even lead to high blood pressure, heart attacks, and stroke.
The incidence of sleep apnea is 2 to 4 percent in healthy men and women. It usually is associated with obesity and occurs in many more men than women. Elevated male hormones are also associated with sleep apnea. Overweight women with PCOS who have elevated male hormone levels and a central type of fat distribution have been shown to be four times more likely to suffer from sleep apnea than healthy women. Prudence’s friend thought she was trying to be funny when she told them of being repeatedly half-jolted out of sleep. The problem was, of course, much more serious and one that required medical attention. Many believe that insulin resistance is a major cause of the condition. This is supported by the finding of a San Diego physician that one-third of his patients with type 2 diabetes suffered from sleep apnea.
The frequent presence of pain in the pelvic area, particularly around the ovaries, is one of the symptoms generally not mentioned in medical textbooks or reviews of PCOS. About a quarter of my PCOS patients complain of chronic pelvic discomfort. They may also suffer more acute episodes of sharp pelvic pain, which gradually resolves in a few hours or days.
The pain occasionally follows sex, and Nina wondered if her vigorous lovemaking was responsible. She was relieved to hear that the pain is caused by small ruptures of ovarian cysts, which irritate the pelvic cavity lining. When a major rupture of a cyst occurs, severe bleeding can result, creating a life-threatening situation and a possible need of a blood transfusion. Although such occurrences are rare, their potential for trouble makes the presence of pelvic pain worth mentioning to your physician.
It should come as no surprise that PCOS symptoms can have major emotional consequences. If you are overweight, as so many women with PCOS are, a loss of 5 to 7 percent of your body weight through diet and moderate exercise can alleviate these physical symptoms and consequently ease the emotional distress.
Crystal, at thirty-six, had been diagnosed with PCOS five years previously and found that weight loss greatly relieved her symptoms. But just as things were going well, she invariably became depressed and began compulsively snacking and overeating. Within a month or two, she regained the weight she had lost and her PCOS symptoms returned. She recognized the pattern after the third cycle and told her doctor. The antidepressants prescribed for her helped her keep emotionally stable and maintain a healthy weight.
To date, most published psychological studies of women with PCOS have not adequately addressed the emotional factors in this syndrome. Recently more researchers are undertaking in-depth studies, and I hope their results will suggest fresh ways for women to cope with the emotional challenges of PCOS. In the meantime, it is important to find a specialist who listens attentively and sympathetically. This doctor should be someone who can help you have an optimistic frame of mind and assist you on the road to significant improvement.
In my opinion, it is of great importance that the physician treating you asks what is most emotionally disturbing to you about your condition. You are the only one who can say how each symptom emotionally affects you. We will talk more in chapter 5, about finding a doctor, and about managing stress and finding emotional support in chapter 12.
If any close family members have been diagnosed with PCOS, your chances of having this inheritable condition are greatly increased. Because of the role that hormones play in both, PCOS has a surprising relationship to epilepsy. We will look at these aspects in the following sections. If it turns out that you have PCOS, take heart: There is a lot you can do to relieve its symptoms.
PCOS often runs in families. As a result, you need to carefully inquire about other women in your family who may have PCOS or symptoms of excess male hormones. How many have weight problems? Do any have excess facial or body hair? Ask about irregular periods and infertility. Did your mother ever have ovarian surgery or trouble conceiving?
Besides looking for symptoms directly related to PCOS, you need to inquire also about type 2 diabetes mellitus and the insulin resistance syndrome. Who has high blood pressure or high cholesterol or triglycerides? Who has had a cardiac event or a stroke? Many women with PCOS end up with type 2 diabetes or heart problems. Sometimes these are the symptoms that prompt women to make an appointment with their doctor while the underlying PCOS condition remains undiagnosed.
If there is a family history of PCOS, you are more likely to have it. This applies particularly to a sister, and sometimes to a mother, with a history of many of your symptoms.
On the other hand, if none of the females in your close family have PCOS-like symptoms, you have good reason to wonder why you should be the first and only one with the syndrome. Yet this is frequently the case—or your symptoms may be caused by something else.
More than a million American women have epilepsy, and the condition itself and antiseizure drugs can affect menstrual cycles. In addition, hormonal changes associated with the menstrual cycle can affect seizures.
Many women have their first epileptic seizures when they begin having periods. As a general rule, estrogen promotes and worsens seizures, whereas progesterone protects women from them. Women are most likely to have seizures just before the beginning of a new menstrual cycle, when their progesterone levels are low, and at ovulation, when their estrogen levels are highest.
Because seizures and antiseizure drugs can disrupt the hormonal signals from the hypothalamus and pituitary to the ovaries, women with epilepsy have an increased risk for irregular periods. This situation is complicated by the fact that epilepsy itself can result from abnormalities in this hormonal pathway. The already complex situation is further complicated by the relationship of epilepsy and PCOS. It seems that epilepsy-related reproductive problems can progress into PCOS.
Women with epilepsy have a 10 to 26 percent higher risk for PCOS than other women. About 40 percent of women treated with valproate (Depakote) tablets for epilepsy have polycystic ovaries, and 17 percent have elevated testosterone levels in the blood despite the absence of polycystic ovaries. Valproate is the leading antiepilepsy drug that may indirectly lead to PCOS, particularly in women who tend to gain weight. Studies of the reversibility of changes are still pending, but it is clear that changes occur due to valproate.
You can’t cure PCOS, but you can lessen its intensity to the point where you’re symptom-free. The key is to lower your level of male hormones. If you are overweight, excess insulin is probably stimulating your ovaries to secrete abnormally high amounts of male hormones, and thus you need to reduce your insulin level. The diet and exercise programs in chapters 6, 7, and 8 can help you lose enough weight to lower your insulin level and become symptom-free.
Some women have trouble accepting that their insulin level has anything to do with their male hormone level. That’s one of the problems with PCOS—it’s a complex condition. Of course, almost anything to do with hormones is complicated. In fact, there are aspects of PCOS on which specialists do not wholly agree. The more you understand the syndrome, the better you can manage it.
Before treatment, you need a diagnosis that you can believe in. In chapter 5 we will look at how to go about finding a knowledgeable physician and what lab tests work best in detecting PCOS.
Then you can take immediate action to relieve infertility, irregular periods, and skin and hair problems by following one of the appropriate treatments in chapter 11. These treatments can ease your symptoms, and you will feel better. But treatments for particular symptoms will not resolve the underlying problem of what is causing them, namely, PCOS. For that, weight loss through diet and physical activity is the best remedy.
Excess weight and insulin resistance are intimately associated with PCOS in many women, and the combination of all three often leads to diabetes, cardiovascular disease, and other serious health disorders. In chapter 2 we will look at how excess weight and insulin resistance affect women with PCOS.