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PERSONAL HEALTH
Women Can Fight an Almost Secret Syndrome
By JANE E. BRODY
It may seem hard to believe that a disorder first identified nearly
70 years ago that affects as many as 10 percent of women would still
be unrecognized by many doctors and in most of those who have it.
But that is the case with a condition called polycystic ovary
syndrome, or PCOS, a bodywide metabolic disorder characterized by
abnormal hormone levels that can result in distressing and sometimes
life-threatening problems, including infertility, obesity, acne,
excessive facial and body hair, diabetes, heart disease and uterine
cancer.
The syndrome was first described in 1935 by two American
gynecologists, Dr. Irving Stein and Dr. Michael Leventhal, and until
recently it was known as the Stein-Leventhal syndrome. It was renamed
after tests revealed that in many women with the syndrome, the
ovaries are covered with beadlike cysts, representing eggs that
failed to mature fully and to be released, as would happen in normal
ovulation.
Typically, it can take years and visits to many specialists before a
woman with PCOS (pronounced PEE-kose) receives a correct diagnosis,
followed by treatment that can relieve symptoms and reduce the risk
of serious complications.
In fact, many women first learn the cause of their diverse symptoms
when they fail to become pregnant and consult infertility specialists.
To be sure, PCOS is hard to diagnose, with symptoms varying widely.
And, out of embarrassment, some women fail to tell their doctors what
is bothering them. Even when the symptoms are accurately conveyed,
women are often told that the symptoms will go away, that their
symptoms are normal and that the problems are caused by stress. PCOS
symptoms can start in adolescence but may be noticed any time in a
woman's reproductive life.
Hormones in Disarray
The body's network of hormones is a finely tuned system, and when one
or more is out of balance with the others, bodywide havoc can result.
With PCOS, there is an imbalance of two pituitary hormones, FSH and
LH, which normally stimulate the ovaries to mature and release eggs
and form a progesterone-producing mass, the corpus luteum. It in turn
sustains an early pregnancy or, if no egg is fertilized, results in
menstruation.
But when FSH and LH are out of whack, a woman may not ovulate or
menstruate regularly, if at all. This makes PCOS a leading cause of
infertility, possibly accounting for as many as half of all cases of
female infertility.
In addition, if a woman fails to menstruate regularly, the uterine
lining becomes overstimulated by estrogen, which can lead to
endometrial cancer.
But an imbalance of reproductive hormones is only part of the
problem. Many women with PCOS also have excessive amounts of insulin
in their blood because of the resistance of their cells to this
hormone.
Insulin's primary task is to maintain a normal blood level of glucose
by moving this sugar, produced by the digestion of carbohydrates,
into cells that use it for energy. But insulin also fosters the
storage of fats, and people with high blood levels of this hormone
often gain weight on a normal diet and have a great deal of
difficulty losing weight.
Half or more of women with PCOS become obese. When insulin resistance
is untreated, the continual pressure on the pancreas to overproduce
insulin can lead to Type 2 diabetes.
Even this is not the end of the story. In women with PCOS, blood
levels of testosterone are also likely to be elevated, resulting in
distressing cosmetic symptoms, like acne that will not respond well
to ordinary treatments; dark, coarse facial hair; hair on the abdomen
and chest; and male-pattern balding.
Other symptoms include dark overgrown skin at the nape of the neck
and around the armpits, which are marks of insulin resistance, and
high blood levels of heart-damaging triglycerides and low levels of
protective high-density lipoprotein cholesterol, greatly increasing
the risk of heart disease and stroke.
PCOS tends to run in families, and there is some evidence that men
may also be affected. So when a woman learns she has this condition,
it makes sense to test others in the family for hormonal
irregularities.
Diagnosis and Treatment
Because of the varied nature of PCOS and because its symptoms may
also apply to other serious disorders, like tumors, several
procedures may be needed to gain a correct diagnosis. The work-up is
best done by an endocrinologist familiar with hormonal disturbances.
A woman should be tested for blood levels of prolactin, thyroid-
stimulating hormone, LH and FSH, progesterone, testosterone and
another male hormone Dheas (dehydroepiandrosterone sulfate), blood
lipids (the two forms of cholesterol and triglycerides), insulin and
her ability to process blood glucose (via a glucose tolerance test).
The doctor may also recommend a transvaginal ultrasound examination
to reveal ovarian enlargement or cysts or overgrowth of the uterine
lining. An endometrial biopsy may be performed to check for cancer.
With a syndrome so diverse, the treatments are also varied. Some
trial and error may be involved since different approaches work
better in some women than in others.
Many women are helped by birth control pills, particularly the
combination oral contraceptives that contain low-androgenic
progestins, like Ortho-Cyclen and Ovulen. This regulates the
menstrual cycle, suppresses FSH and LH release, lowers testosterone
levels (relieving symptoms like acne and excess hair growth), raises
the level of the protective cholesterol and protects the uterine
lining.
If a woman with PCOS then wishes to become pregnant, she is advised
to stop the pill and immediately begin trying to conceive before her
hormone levels become abnormal again. The ovulation-stimulating drug
Clomid is also often prescribed in such cases.
Those found to be insulin resistant are helped by the insulin-
sensitizing medications used to treat Type 2 diabetes, most often
metformin (Glucophage) or the newer drugs, pioglitazone (Actos) and
rosiglitazone (Avandia).
Treatment of insulin resistance can help a woman who is trying to
shed excess weight.
Many women with PCOS have found that in addition to regular exercise,
a diet relatively low in carbohydrates helps control weight by
reducing the level of insulin the body must produce to process
glucose.
But since women with PCOS are already at risk of developing heart
disease, overconsuming saturated fats and cholesterol is unwise.
Focus instead on lean meats, fish and poultry and low-fat dairy
products with lots of nonstarchy vegetables and low-calorie (low
sugar) fruits, like berries and cantaloupe.
Eat grain products in modest amounts and preferably unrefined — whole
wheat breads and cereals, oats and brown rice.
The Emotional Connection
Depression, embarrassment, discouragement, stress, anxiety and
feelings of hopelessness are not uncommon among women with PCOS,
especially before they receive proper diagnostic work-ups and
effective treatments. Many find help in support groups, sometimes
through chapters of the Polycystic Ovarian Syndrome Association (on
the Web at pcosupport.org). The group can also be reached at P.O. Box
80517, Portland, Ore. 97280 or by phone at 877-775-PCOS (877-755-
7267).
A new book, "Living With PCOS" (Addicus Books, $14.95), by Angela
Best-Boss and Evelina Weidman Sterling with Dr. Richard S. Legro,
contains inspiring stories from affected women and information about
diagnosis and treatment.
