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Living with PCOS
Polycystic Ovary Syndrome
By Angela Boss, Evelina Sterling, Jerald S. Goldstein, Jack Kusler
Addicus Books, Inc.Copyright © 2009 Angela Best Boss and Evelina Weidman Sterling
All rights reserved.
PCOS — A Complex Hormone Disorder
As soon as Debbie hit puberty, her periods became irregular. She gained weight faster than any of her girlfriends, and she was embarrassed by the amount of hair on her chin, arms, and legs. Her mother took her to their family doctor, who brushed off the symptoms, explaining that it would take a while for her hormones to "adjust."
Debbie is now twenty-eight, happily married, and ready to start a family. Unfortunately, she is still having the same problems. Her hormones still haven't "adjusted." As a matter of fact, it has been six months since her last period. When she talked to her doctor about this during her last visit, he indicated that she may be under too much stress and that she is a few pounds overweight. The doctor said tests weren't necessary; it was nothing serious. He said Debbie should just go home and relax.
However, Debbie cannot relax. She is frustrated and confused. She knows something is wrong, but what?
What Is PCOS?
Polycystic ovary syndrome, or PCOS, is a complex hormone disorder, characterized by an increased production of androgens (male hormones) and ovulatory dysfunction. It causes symptoms such as irregular menstrual cycles, infertility, excessive body hair (hirsutism), acne, and obesity. The syndrome is named for the cysts that may form in the ovaries when the hormone imbalance interrupts the ovulation process. The term polycystic means "composed of many cysts." If PCOS is left untreated, and the hormone imbalance continues, the syndrome can eventually lead to serious illnesses such as diabetes, heart disease, stroke, and endometrial cancers.
Symptoms of PCOS
Symptoms of PCOS usually begin to appear around the time a young woman starts having her menstrual cycle. However, symptoms can also appear for the first time when a woman is older, especially if she has gained weight. Because it is a syndrome, PCOS includes a set of symptoms. Women with PCOS can suffer from any combination of these symptoms. Some women may experience only one of the symptoms, while other women experience all of them. The severity of PCOS symptoms can vary widely from woman to woman. Talk to your physician if you suffer from one or more of these symptoms:
Chronically irregular menstrual cycles or absent periods
Infertility or difficulty conceiving (due to not ovulating)
Type 2 diabetes or insulin resistance
Obesity (more than 20 percent over ideal weight)
Sudden, unexplained weight gain (even if you are still at normal weight)
Excessive hair growth (especially, dark hair on the face, chest, or abdomen)
Male-pattern hair loss or thinning hair
It is possible to have these symptoms and not have PCOS. However, most women with these symptoms, especially irregular menstrual cycles, do have PCOS. In fact, 80 percent of women with six or fewer periods per year have PCOS.
Researchers have found some variations in the symptoms among different races. For example, while excessive body hair is found among 70 percent of American women with PCOS, it occurs only in about 10 to 20 percent of Asian women. Unfortunately, there is not enough evidence to explain why these variations in symptoms occur.
Worldwide Effort to Define PCOS
Because the symptoms of PCOS can vary widely, it can be difficult to exclude or include symptoms as a part of the diagnosis. In fact, the World Health Organization tried to determine a comprehensive list of symptoms and couldn't agree on more than four of them.
In 2003, a consortium of doctors from the United States and Europe gathered in Rotterdam to reach a consensus about PCOS symptoms. The intention of the Rotterdam PCOS consensus workshop group was to revise the guidelines that had been released by the National Institutes of Health in 1990. The Rotterdam panel determined that to be diagnosed with PCOS, a woman needed to meet two of three criteria:
Irregular or absent ovulation (less than eight periods per year)
Elevated levels of androgenic (male) hormones
At least one ovary with twelve or more follicles or an enlarged ovary, greater than 10 millimeters in volume
The Rotterdam panel also determined that other factors could influence the diagnosis of PCOS. This included women who have regular periods but have polycystic ovaries on ultrasound and who have elevated androgens. A woman with PCOS would also have irregular menses and polycystic ovaries but no evidence of elevated androgens.
What Causes PCOS?
PCOS is the result of a hormonal imbalance, caused by a disorder in a woman's endocrine system. This system is made up of all the body's glands — pituitary, pineal, thyroid, parathyroid, thymus, adrenal, and pancreas. Hormones secreted by these glands control such things as growth, metabolism, and reproduction. In women with PCOS, this system is not working properly. Scientists believe there are several potential causes of this hormonal imbalance.
Insulin resistance refers to the body's cells not responding to insulin, making it difficult to metabolize sugars. In other words, the body is resisting its own insulin. The hormone insulin is produced by the pancreas. Let's take a closer look at how insulin resistance occurs, starting with the intake of food. As food enters your body, it is broken down into small components, including glucose, an important sugar that comes from carbohydrates. Glucose is a major source of quick energy for the body. When you eat foods high in carbohydrates, your body detects a rise in glucose and signals the pancreas to produce more insulin.
Together, glucose and insulin enter the bloodstream. The insulin fits into special "insulin receptors" in the cells. This allows the excess glucose to enter the cells and to be converted to glycogen, which is then stored in the muscles and liver to be used later for energy. To use an analogy, think of insulin as the key that unlocks the body's cell door so that excess glucose can enter. When one has insulin resistance, it is as if the key no longer fits the lock. Consequently, the insulin is not able to fit into the insulin receptors, and excess glucose is not allowed to enter the cells. This causes a rise in both glucose and insulin levels in the blood.
For many years, PCOS was considered a direct result of high levels of male hormones in the body, although it was not understood exactly what caused these high levels. Researchers now understand the association between PCOS and the body's overproduction of insulin. An increase in insulin can stimulate androgen production. Subsequently, the body produces more male hormones and inhibits the ovaries from ovulating. This, in turn, causes the many PCOS-related symptoms.
Although insulin resistance is not found in every woman with PCOS, it is seen in many, most prominently in those who are overweight. If left untreated, insulin resistance can lead to Type 2 diabetes, defined as a condition in which the body either makes too little insulin or cannot properly use the insulin it makes to convert blood glucose to energy. Type 2 diabetes may be controlled with diet, exercise, and weight loss, or may require oral medications and/or insulin injections.
It is unlikely that a single gene is involved in causing PCOS. It is more likely that multiple genes are involved. Research is ongoing to determine the role genes play. However, much of the data is difficult to gather since many women from previous generations were probably never diagnosed so it's impossible to know if they had PCOS. For example, there may be some women in your family who had difficulty getting pregnant but were eventually able to do so. Consequently, they may not think they had a problem with fertility. In addition, many of their other symptoms — hair growth and acne, for example — were either not serious or not important enough to mention to their physicians.
If you have a family history of adult-onset diabetes, infertility (or difficulty conceiving), obesity, or hirsutism (among women), then PCOS may run in your family. For example, if your sister has PCOS, there is a significant chance that you will also have PCOS.
Similarly, obesity can also increase the risk of developing the syndrome in those prone to developing it. Fatty tissues can produce estrogen, which can confuse the pituitary gland into secreting abnormal amounts of hormones, contributing to the overall endocrine problem. Some scientists speculate that women with PCOS are born with either a faulty gene or set of genes that triggers abnormally high levels of male hormones.
"There is no one officially diagnosed with PCOS in my family, but now that I have a better understanding of the condition, I see clearly that my mother has it and so did two of my dad's sisters and his mother. My dad is diabetic, as are several members of our extended family. No one takes me seriously when I try to get them to seek medical advice. They just count the diabetes and the heart conditions as the family curse," said Shelly, age twenty-nine, a woman with PCOS. "They don't consider that PCOS could be part of the culprit in our family's medical problems."
Researchers believe that the genetics of PCOS can also be passed on to males, who may experience some of the common symptoms. Male relatives of women with PCOS tend to be insulin resistant.
Who Gets PCOS?
The most common endocrine disorder, PCOS is estimated to affect anywhere from 5 to 10 percent of all women. At least 5 million and as many as 10 million women in the United States suffer from PCOS. It affects women of all ages, from adolescence to meno-pause. The syndrome does not discriminate and can be found in women of all races and ethnic groups throughout the world, although it tends to be more common in women of Mediterranean descent. Once a woman is diagnosed, she will need to manage the symptoms for the rest of her life.
Although the age of onset for PCOS symptoms varies, most women with PCOS can think back to their teenage years and remember a point in time when they started feeling "different" and wondering if something was wrong with them. Adolescent girls experience many of the same symptoms as adults — irregular or absent periods, unwanted hair, and acne. For many adolescents, these physical changes seem to occur almost overnight. These girls might start to suddenly notice more and more dark hair on their chin and upper lip, or maybe their face is beginning to break out despite efforts to control it. In fact, their acne may be more severe than that of their friends.
Although young girls with PCOS may gain weight, it is important to know that PCOS, in itself, does not cause weight gain. PCOS, however, does make it difficult for a young girl to lose weight even though she is exercising regularly and eating well.
Adolescence can be a very difficult and emotional time for anyone. But for girls with PCOS, it can be even more difficult. They often feel isolated and confused. At an age when appearance is so important to them, girls with PCOS lose self-confidence as many of the symptoms start appearing. For many girls this feeling of confusion is exacerbated because they have no one to talk to for information or encouragement regarding their symptoms. Girls often feel too embarrassed to seek help or even mention what is happening to them. Additionally, mothers, friends, or other close adults often don't understand what is happening either. It's important to find a knowledgeable physician who can perform appropriate hormone tests to determine whether a teen has PCOS.
Some of the newer research suggests that girls who begin to develop pubic hair early (usually before the age of eight), a condition known as premature pubarche, have many of the signs and symptoms of PCOS. These girls have both elevated insulin levels and elevated levels of dehydroepiandrosterone sulfate (DHEAS), a hormone secreted by the adrenal glands. An elevated level of DHEA is normally one of the first biochemical signs of awakening of the reproductive glands — in this case, the adrenal glands — after the long period of childhood inactivity. Throughout the rest of puberty, these girls produce excess testosterone and develop irregular periods consistent with PCOS. Thus, premature pubarche may be an early form of PCOS.
Women of Reproductive Age
The reproductive years typically refer to the years between the late teens and the mid-forties. It is during this time that many women are trying to conceive. Generally, a woman with PCOS will begin to experience menstrual irregularities within three to four years after her first period. After menstruation starts, a woman may have a few years of normal cycles until the symptoms of PCOS become evident. In some cases, women continue into their early twenties with normal cycles or no apparent PCOS symptoms before the symptoms begin.
Most women are diagnosed with PCOS during their twenties or thirties. Many women are not diagnosed until they seek medical treatment after being unable to get pregnant. Because PCOS is often diagnosed only after a woman has trouble conceiving, those women who are not trying to become pregnant often are not diagnosed. But PCOS is much more than a fertility issue. Women who are not trying to become pregnant will still benefit from treatment.
It is still unclear how PCOS changes as women age, especially as they enter their thirties and forties. For some women, PCOS-related symptoms improve significantly as they get older. For others, the symptoms only worsen with age. Scientific research has not yet determined how factors such as weight loss, previous treatment with fertility drugs, or previous pregnancies or miscarriages affect women with PCOS over the course of their lives.
Menopause is the time in a woman's life when her menstrual cycle ends. Menopause typically occurs around age 50; however, it can occur at different ages. Many women experience the beginning stages of menopause in their 40s while others may not experience it as late as the age of 60. Menopause that occurs before age 40 is referred to as premature menopause.
Symptoms of menopause include irregular periods, hot flashes, vaginal dryness, decline in sexual interest, mood changes, and night sweats. Menopause is usually determined after a woman has not had a period for one year or more. PCOS can go unnoticed in menopausal women since they have irregular periods and often go for long stretches of time without menstruating at all.
Many women with PCOS believe that, since they have irregular periods, they won't go through meno-pause. However, this is not the case. It is important for menopausal women to seek treatment for both PCOS and menopausal symptoms.
Many women will take hormone replacement therapy (HRT) to relieve menopausal symptoms and to decrease the risk of developing osteoporosis. Because menopause causes a significant decrease in estrogen, many physicians prescribe estrogen. It can be given as a pill, topical gel, or patch. Some women, especially those with an intact uterus, are also given progesterone in addition to the estrogen. This helps protect the uterine lining against potentially harmful tissue changes, which can lead to endometrial cancer. The progesterone usually causes bleeding, similar to normal menstruation.
Unfortunately, hormone replacement therapy also comes with risks. Official guidelines recommend that women take HRT only for relief of menopausal symptoms and then at the lowest dose possible for the shortest period of time possible. Extended use of hormone therapy has been linked to a variety of significant health problems, including breast cancer, heart attack and stroke. It is important to discuss both the benefits and risks with your doctor before you decide to start hormone replacement therapy. Also, make sure your health-care provider is familiar with PCOS and can help you select a treatment plan that will take into consideration the specific problems associated with PCOS.
Excerpted from Living with PCOS by Angela Boss, Evelina Sterling, Jerald S. Goldstein, Jack Kusler. Copyright © 2009 Angela Best Boss and Evelina Weidman Sterling. Excerpted by permission of Addicus Books, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
1 PCOS — A Complex Hormone Disorder,
2 Getting a Diagnosis,
3 Treatment of PCOS Symptoms,
4 Coping Emotionally with PCOS,
5 Getting Pregnant,
6 Maintaining a Pregnancy,
7 Long-Term Risks of PCOS,
8 Hope for the Future,
About the Authors,