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An attack on femininity Poorly understood syndrome causes excess hair growth, weight gain, acne, infertility Tuesday, June 06, 2000 By Johnna A. Pro, Post-Gazette Staff Writer
Editor's note: Post-Gazette staff writer Johnna A. Pro, 36, exhibited the symptoms of Polycystic Ovary Syndrome for more than a decade and in that time was repeatedly told by doctors to lose weight or to take birth control pills. Eight weeks ago, she was diagnosed with PCOS and is undergoing treatment with a combination of medication, diet and exercise.
If you're a man, shaving your face every day or so is probably part of the normal grooming routine. Imagine being woman and having to do the same.
And if you are the parents of a teen-age girl, you know that an occasional acne breakout can be a crisis. But picture your daughter 15 years from now battling that same acne on the morning of a job interview or the day of her wedding.
And for those women who are prone to being thin, imagine waking up one morning 30, 40, or 60 pounds heavier than you were six months ago, no matter how much you diet or exercise.
The odd hair growth, acne and weight gain are just three of the most common symptoms of polycystic ovary syndrome, or PCOS, a malady that health professionals believe affects at least 5 million American women and perhaps as many as 10 million.
Of that number, about 25 percent have been diagnosed, largely because researchers and doctors have only recently begun to understand the causes.
And while the name suggests a gynecological illness, PCOS is, in fact, an endocrinological problem, one that researchers believe has its roots in how insulin is metabolized in the body. This in turn affects production of male hormones in the body, producing the masculine characteristics.
Other symptoms can include fatigue, depression, irregular periods or a lack of menstruation, and in many cases, infertility. Add to that dark skin blotches, skin tags (tear drop-shaped skin folds) and hair loss and you have what has been described as "an attack on femininity." Of greater concern is that, untreated, PCOS can lead to heart disease, diabetes and uterine cancer.
"This is a lifelong problem and you need to learn what's happening with your body. You need to know how to treat it," said Carol Balk, 39, owner of Color Me Mine in Squirrel Hill who was diagnosed with PCOS nine years ago.
Little understanding
For more than five years after her diagnosis, Balk got little information or support from doctors, many of whom were dismissive of her symptoms, including fatigue and hirsutism, or abnormal hair growth.
In fact, one doctor told Balk that if she wanted to prepare her body for pregnancy in the future, she should concentrate not on her medical symptoms, but on finding a husband.
She has since married, but she is often fatigued, conscious of unwanted hair growth and hoping to conceive.
Balk is not alone.
For years, thousands of women from around the country have experienced the same reaction from a medical community with little understanding of PCOS, except in rare cases when the infertility aspect was treated. As a result, single women, older women and those not trying to get pregnant had little chance of being diagnosed. Most were simply prescribed birth control pills to regulate periods and told to lose weight.
Those women who were diagnosed and managed to successfully conceive through infertility treatments often moved on with their lives, unaware they had a potentially fatal syndrome.
In either case, women suffered in silence as they plucked, shaved, waxed or underwent electrolysis to remove hair from their breasts, faces or backs; hid unsightly bulges under sweatpants as they fought unexplained weight gain; made repeated trips to dermatologists; and believed the gynecologists who told them they didn't have periods because they were fat.
"Prior to five years ago, PCOS had been completely misunderstood and not diagnosed. The breadth of knowledge just wasn't there," said Kristin Rencher of Portland, Ore., executive director of the Polycystic Ovarian Syndrome Association. "Five or six years ago, you would have gotten no response from your doctor. They would have handed you a pack of birth control pills. Now they're saying it's more than menstrual irregularities, it's a lifelong condition. It shaves years off of your life if it goes untreated."
Part of the problem then and now is that the PCOS symptoms manifest themselves in different ways. In fact, not all affected women have polycystic ovaries, (when the ovaries are enlarged and contain many fluid-filled sacs or cysts) although that was the catalyst for naming the syndrome in the 1930s.
Women with PCOS can have any combination of symptoms of varying severity. As a result, researchers, doctors and women themselves looked at the symptoms individually rather than collectively.
That all changed in 1997, when women joined forces to create a virtual self-help organization online. By then, researchers, including Penn State's Dr. Richard Legro, began to make a connection between the symptoms.
The PCOSA Web site gets 100,000 hits a month, and the organization hosted its third annual conference last week in San Diego.
Dozens of chapters have since formed around the country, including one here started in January by Jessica Mueller, 29, of West View.
"I was totally relieved to know what was wrong with me, but the only support was on the Internet," said Mueller, who now fields e-mails from women around the region looking for help. "Pittsburgh is such a huge city and there was nothing here in terms of support."
In addition, Legro and the country's other lead PCOS researchers have made major strides in understanding that many women with PCOS also have insulin resistance.
That means their bodies do not use insulin properly, and as result, they produce it in excess to compensate. Those high levels of insulin can have an impact on the ovaries, the pancreas and the body's production of androgens, or male hormones.
The Catch-22 is that the heavier you are, the more insulin you produce. But the overproduction of insulin also makes it difficult to lose weight, which in turn causes the other PCOS medical problems.
Only recently have medical researchers recognized the role of these high insulin levels, said Dr. Jann Johnston, chief of endocrinology at Mercy Hospital.
Johnston is on a short list of local doctors with an understanding of the PCOS, having diagnosed about 100 women in the past two years.
The good news is that the word is starting to spread -- Johnston says several groups of personal care physicians are now recognizing the symptoms and sending women to endocrinologists for testing. In addition, research here is under way.
Dr. Silva Arslanian, a pediatric endocrinologist at Children's Hospital of Pittsburgh, is conducting a three-phase study of girls ranging from 8 to 20 who are overweight and who have PCOS.
"If you catch it early, maybe you can change what might happen 10 or 20 years down the road," Arslanian said.
No cure, but hope
There is no cure for PCOS.
There is, however, hope now that researchers are beginning to understand the role that insulin plays in the syndrome.
The most common treatment is a drug called metformin, a small white pill marketed as Glucophage. This is also a treatment for diabetes.
Lowering insulin levels restores menstruation and lowers production of testosterone, thus diminishing symptoms associated with having excess male hormones -- the hair growth, acne, obesity and cardiovascular risk.
"It allows the insulin to work more effectively," Johnston said.
In addition, doctors and researchers are debating the merits of diet to help ease the symptoms.
And while there is no consensus among the medical community, women who have PCOS say that changing the kinds of carbohydrates they eat -- more fruits, vegetables and heavy grain bread instead of white bread -- they feel better and lose weight more easily.
What's more, since January, there has been an explosion of new PCOS information. That includes articles in major magazines, newspaper reports and a new book titled "PCOS -- A Woman's Guide to Dealing With Polycystic Ovary Syndrome."
The book, written by PCOS sufferer Colette Harris, 27, of London, and a colleague Dr. Adam Carey, is available in the United Kingdom and will be published in the United States in September.
Another book, "PCOS: The Hidden Epidemic," by Dr. Samuel S. Thatcher, also is due out in September.
Harris, a health journalist, began writing about PCOS since being diagnosed four years ago.
"I was just astonished there was no information out there," she said. "I couldn't find books in the library or help or other women who had it. I just hope the book helps to raise awareness."
So do the women who have PCOS.
"Every general practitioner should understand the symptoms of PCOS and be diagnosing it," said Christine Gray DeZarn, founder of the national PCOS organization.
Post-Gazette staff writer Johnna A. Pro can be reached at jpro@post-gazette.com.
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