Dealing with the most visible signs of PCOS is no walk in the park. In fact, for some, the social consequences of excessive hair growth, acne, and thinning scalp hair are traumatic—there’s just no other word for it, as studies I’ll talk about in the following pages show. Many also have to face the added burden of being overweight or obese and the possibility of long-term health risks that come with it. So it’s no surprise that many of my patients are anxious, stressed-out, and frustrated.
In early adolescence, girls with PCOS—like many other girls that age—are dissatisfied with the way they look. They hate being different from their friends who have a relatively clear complexion and normal body weight. And the feeling that they don’t fit in shapes many aspects of their life. They may become obsessed with their body image and feel less than feminine.
In our culture, girls learn early to tie self-esteem to certain body shapes (the thinner the better!) and flawless skin, and that idea is only reinforced by the media. Ads for everything from soap to bikinis can be painful reminders for young women, especially those with PCOS, that they fall short of the mark. The fictional fairyland of skinny, toned, and smooth-skinned beauties is real to young girls, and this makes it that much harder for them to cope with their physical symptoms.
In this environment, it can be difficult for them to understand what is happening to them. If other family members are overweight, they may have learned that genes play a significant role in body shape and they may even start blaming their parents for their weight problems.
Poor self-esteem and dissatisfaction with body image can lead to varying degrees of depression in girls, and in those with PCOS in particular. Some girls cope by exercising rigid control over what they can—namely, what they eat. When taken to extremes, they develop a variety of eating disorders that can have serious medical consequences. Quite thin, clinically hirsute women with eating disorders such as anorexia nervosa or bulimia make up 2 to 3 percent of my PCOS patients. They have the clinical features of PCOS, including elevated male hormone blood levels and polycystic ovaries visible on ultrasound. They’re typically fat-phobic and are obsessive about avoiding dietary fats. Their chronic eating disorders often persist until the late twenties and early thirties.
Since PCOS often becomes evident at the same age girls become interested in attracting romantic partners, the cosmetic and psychosexual effects of the syndrome usually cause profound emotional distress.
In a British study of heterosexual women in a PCOS self-help group, G. Kitzinger and J. Wilmott found that PCOS had a major impact in the daily life of most of the thirty participants who volunteered to be the subjects of in-depth interviews. Many spoke about the frustration and anger resulting from delay in diagnosis, the lack of information they received from health professionals, and the frustration of trying to get doctors to take their symptoms seriously Many researched their symptoms and strongly suspected PCOS as a probable cause long before seeing a series of physicians. They were assertive in asking for specific treatments, and this sometimes led to problems in doctor-patient relationships.
They repeatedly referred to themselves as “freaks” and felt they failed to conform to “normal” womanhood or “femininity” Their most distressing symptoms were excessive facial and body hair, menstrual irregularity, and infertility. Many were reassured through group meetings that others with PCOS actually looked quite normal and feminine, beyond a few facial hairs. The idea that they had increased levels of male hormones conjured up many negative feelings and having to remove facial hair was a constant reminder of their supposed lack of femininity. Some went to great lengths to hide their facial hair from husbands or close friends.
In the same study, erratic periods or sometimes heavy and frequent menstrual bleeding were also distressing symptoms. Some said it was hard to feel like a woman with only a few periods a year. Others said that the menstrual cycle is a fundamental part of being a woman, and not having a period regularly made them feel “odd” or “like a child.” They often considered the use of birth control pills as “artificial” and offering a “fake” sense of femininity.
My patients often echo these feelings, and believe pills are unhealthy and unfeminine. Infertility promoted powerful, crushing feelings of failure. Women in the study were, to some extent, reassured that even “normal” women at times have difficulty conceiving. Still, they carried a sense of shame linked to their trouble conceiving, and fertility treatments were generally kept secret even from close friends and family.
A review of the effects of PCOS on health-related quality of life was published by S. Coffey and H. Mason in 2003. Since the experience of life and therefore illness is subjective, the measurement of how the illness affects you and the benefits to you of treatment are vital in the understanding of PCOS. During psychological testing, women with PCOS had higher levels of the adrenal stress hormone cortisol compared with those in a control group, indicating an increased incidence of depression, psychosexual problems, and anxiety. Hirsutism and acne can affect quality of life in the same way severe chronic illnesses can. (When women with PCOS have type 2 diabetes, diabetic complications affect their quality of life immensely.) On the other hand, any improvements in skin and hair symptoms resulted in dramatic improvements in quality of life.
In a German survey published in 2003 by Dr. Onno Janssen and others, fifty women with PCOS and control subjects were interviewed. Hirsutism, obesity, and infertility had significant psychological disturbances, which included the following:
• Interpersonal sensitivity
• Depression
• Obsessive-compulsive behavior
• Frustration and anxiety
• Aggression
• Vitality
• Poor social function
• Less satisfaction with sex life and a negative feeling of sexual self-worth
• Feeling less attractive
In my experience, weight loss, reduced male hormone levels, and improved PCOS symptoms profoundly improve emotional well-being.
Most cases of depression go both undiagnosed and untreated, perhaps because people hide their depression well. They hold down jobs, but when home alone, they can feel so depressed, they are almost incapacitated. They take pleasure in nothing, have little appetite, and often sleep poorly. They don’t go out socially and may sit in front of the TV all evening without really watching anything. A few of them sleep the time away. The next morning, they put on a cheerful face for another day at work. For some, this feeling of depression passes after some weeks or months. Others need professional help, and the sooner the better.
In all of our lives, things happen that make us feel sad, such as the death of a loved one, divorce, or job loss. Sadness is an understandable reaction to such events. Although your sadness may be intense, you carry on with your life. As time passes, your feelings lighten.
When your sadness doesn’t lift with time and starts to interfere with your work and social relationships, you have developed what psychiatrists call a mood disorder. Depression at this level requires professional care.
About one in ten Americans become depressed at some time each year, affecting one out of five families. Nearly two-thirds of depressed people don’t realize it. Among those who do know, some are ashamed, seeing depression as personal weakness or a character flaw. Relatively few receive adequate treatment. You needn’t be one of them!
When Nina and Angela were laid off, friends couldn’t help noticing the difference in the way each handled the situation. They had worked for the same company and knew each other well through belonging to the same PCOS support group. Their husbands got along, their kids went to the same school district—they’d even vacationed together.
Financially the layoffs hit both families hard. After several months of searching for a job that would replace her lost income, Nina took a municipal job at a significant pay cut. The family watched the purse strings more closely but continued to enjoy their lives.
Angela had no more success than Nina in finding a good job, but she didn’t settle for a step down in pay. After some months, she began sleeping most of the day, paying little attention to her children or house. She sometimes went shopping for hours, but never bought anything. She began gaining weight through compulsive eating, and her PCOS symptoms worsened.
Nina persuaded her friend to see a psychiatrist, in spite of her fears that family and friends might think she was “going crazy.” Angela was diagnosed with major depression and subsequently recovered with the help of antidepressants. Her psychiatrist suggested that she might have been already suffering from PCOS-related depression before the layoffs—the event had simply triggered major depression.
With effective treatment, Angela was soon surprised at how much better she felt.
In a word, probably. Twice as many women as men are diagnosed with depression, though equal numbers of very young boys and girls become depressed; it’s in adolescence that more girls than boys become depressed. This greater likelihood of depression continues through women’s lives into old age. Some women may respond to stress differently than men. Others may have more stress. Women’s roles in both workplace and home can involve more worries and conflicts.
On the other hand, women may be diagnosed more frequently because of their greater willingness to see a doctor. They are also more willing than men to acknowledge their feelings. Men may repress feelings of depression or mask them with alcohol or drug abuse. Where alcohol and drugs are not available, men and women are diagnosed with depression with more or less the same frequency
Hormonal changes during menstrual cycles may be associated with depression in some women. The hormonal changes of pregnancy and childbirth can also precipitate mood changes. Women who become depressed at menopause, however, typically have had previous episodes of depression.
Therefore, although we know that twice as many women as men are diagnosed with depression, we cannot be sure that more women than men suffer from the condition.
There are no test strips or lab tests to show that you have major depression. Instead, doctors rely on the presence of four kinds of symptoms to make a diagnosis. These are:
• Mood
• Behavior
• Thinking patterns
• Physical symptoms
These symptoms vary with personality and age. For example, the most noticeable symptom is often a change in behavior in the young, a persistent bad mood in the middle-aged, and physical symptoms in the elderly. Some people feel worse in the early morning and better later in the day. Women may be more depressed before the onset of menstruation.
When diagnosing depression, doctors look for at least five of the nine following symptoms. A depressed mood must be predominant, last for at least two weeks, and be severe enough to interfere with daily activities.
Depressed mood. This low mood can be so strong that you may not remember what it was like to feel otherwise. You may resent anyone who offers advice or help, or drive people away, socially isolating yourself as your mood worsens.
Sleep disturbance. Four out of five people with major depression have sleep problems. Some find it hard to fall asleep, while others wake during the night and remain awake. A few escape into long periods of sleep.
Loss of interest. You lose interest in the small things that previously added fun to your life. Family and friends notice your loss of interest and pleasure in them. You also lose interest in the pleasures of sex. A lowered sex drive is frequently a warning of oncoming depression.
Feelings of guilt and hopelessness. Your guilt is excessive, inappropriate, and sometimes even delusional. Guilt is often accompanied by excessive feelings of hopelessness, helplessness, or worthlessness.
Fatigue. You feel tired much of the time and don’t have enough energy to accomplish everyday things you once did without thinking much about. Your work declines, the laundry piles up, and much gets postponed.
Concentration difficulties. You have difficulty concentrating, thinking logically, or making decisions. You may suffer from some memory loss. Depression can affect your judgment, sometimes making you wonder why you did something that you normally would not do.
Appetite decrease or increase. You may lose your appetite, hardly notice food anymore, or even be nauseated by the thought of it. Your loss of appetite may cause you to lose more than 5 percent loss of your body weight in a month. Some depressed people gain weight through increased appetite and sugar cravings. This is more likely to occur in hormonal disturbances such as PCOS, Cushing’s syndrome, and thyroid disorders.
Slow or agitated movement. Depression can slow you down. You may speak more slowly and take more time to respond. You may walk around with slumped shoulders and eyes on the ground, avoiding eye contact. Older people are more likely to develop agitated movements. They may not be able to sit still, so they pace, wringing their hands and gesturing nervously.
Suicidal thinking. If you’re feeling so low that suicide seems like a solution, tell your family and friends as soon as possible and seek professional help, whether or not you’ve actually made plans about how you would do it.
If you are feeling depressed, don’t hunker down and hope the feeling will pass. Perhaps it won’t. You can be helped. If you think you can’t, that is your depressed self thinking, not the real you. If you have major depression, you need professional help, so ask your family doctor for a referral—he or she will keep the referral confidential, if you request that. You need not acknowledge visits to a psychiatrist as psychiatric treatment on future legal or employment records.
Seeing a psychiatrist today does not involve long hours on a couch recalling incidents from childhood. Chances are, once a psychiatrist diagnoses you with major depression, his or her immediate task will be to get you feeling better as soon as possible. Finding the cause of your depression is much less important than restoring your sense of well-being. The psychiatrist might prescribe antidepressants. Only after you have begun to respond positively will treatment proceed further. As a woman with PCOS, you need to help the psychiatrist at the outset by suggesting that your symptoms are a cause, if they are, of your depression.
Why a psychiatrist? Aren’t there other qualified professionals, and remedies other than antidepressants? Yes, indeed, there may be other effective alternatives. However, if you are already depressed, you need rapid treatment to help you out of it. In my experience, psychiatrists and antidepressants have proved themselves as a reliable rescue means in an emergency.
Women with skin and hair problems caused by PCOS are likely to have strong feelings of anxiety, and to be even more aware of them than feelings of depression. Such anxiety is natural and does not amount to an emotional disorder. Feeling anxious in this way is equivalent to feeling sad over a loss. Both are appropriate emotions, until they become overwhelming and interfere with daily activities.
People with anxiety strong enough to qualify as an emotional disorder often feel apprehension or fear about a danger they have not yet perceived—they have a feeling something could happen. Shortness of breath, a rapid heartbeat, trembling, and sweating are among the physical symptoms of anxiety.
Many depressed people also suffer from anxiety. Women with PCOS frequently experience some combination of the two. When a woman’s depression is lifted by an antidepressant, her anxiety tends to disappear also. If her anxiety persists or if she suffers from anxiety alone, she should probably take an anti-anxiety medication as prescribed by a doctor. Alcohol and over-the-counter sedatives are not a wise or even effective substitute. Don’t try to self-medicate or wait for feelings of anxiety to pass. Seek help now.
People with positive relationships lead more rewarding and less stressful lives that those with negative or few relationships. You are likely to have formed your positive relationships as strong ties to parents during childhood and to spouse, family, and friends during adulthood. On the other hand, losses of relationships, such as divorce, estrangement, or bereavement, reduce your sense of belonging and increase your fear of loneliness— and can have a very real and negative effect on your physical well-being. People in social isolation have been found to have higher blood pressure and other undesirable physical changes.
Your relationships form a kind of web or network, although of course not all relationships are supportive. The healthiest interactions permit you to develop as a person within familiar social settings. A social network helps you cope with stress caused by change.
People with religious beliefs often seem to have better health than those who don’t. Many have assumed that this is because religious people tend to lead stable, low-key lives and have few health-endangering habits. But even this assumption does not explain the full extent that the studies report. A 1972 survey of more than 90,000 people found that those who attended church weekly had half the death rate from coronary artery disease of those who didn’t.
I recommend participating in groups that are characterized by mutual support and in which competition is minimized, regardless of whether they are religious or secular. Local PCOSA chapters provide information from professionals, dieting help, and interaction with other women who have PCOS. Many organizations are on the Internet. The medical information may or may not be reliable, but there’s no question the groups are a valuable source of emotional support.
A woman with PCOS clearly requires not only medical treatment for symptoms of infertility, irregular cycles, obesity, and skin and hair symptoms, but also help with painful psychological symptoms that strike at the heart of her identity as a woman. This should include psychological counseling and participation in PCOS self-help groups. Such counseling and group participation will go a long way in improving your quality of life and ability to cope with emotional problems.