Cycles of Misery

(Original article was posted at http://www.nj.com)

Polycystic ovarian syndrome affects millions of women
Tuesday, December 07, 2004
BY MEG NUGENT
Star-Ledger Staff

DANA P., a 19-year-old aspiring nurse from Sussex County, kept returning to her doctor, beginning when she was still in high school, in a frustrating quest for answers to questions about why her body was going haywire.

Why was she missing menstrual periods when they used to occur every month without fail? Why was she suddenly sprouting facial hair? Why was she gaining an average of 10 pounds per year, even though she was an active member of several basketball and soccer teams?

The answers her doctor supplied just didn't cut it.

"She said it was normal for kids to miss their periods, but I said it's not normal for me," recalled Dana, who asked that her last name and hometown not be used to protect her privacy. To her amazement, Dana said, the physician attributed her facial hair to her Italian heritage. As for the weight gain, Dana said, "she kept saying, 'You must be changing your eating habits.'" But she hadn't changed her diet at all, nor had she slacked off on any of her sports activities.

"I wasted two years, trying to convince my doctor that something was wrong," she said. More dogged persistence and a switch to another doctor finally gave Dana a diagnosis: She had polycystic ovarian syndrome, a complex hormonal disorder that is considered a leading cause of infertility. It may account for as many as half of all infertility cases, according to the Polycystic Ovarian Syndrome Association. If left untreated, a woman with PCOS can increase her risk of developing serious diseases that include heart disease, diabetes and cancer of the endometrium, the inner lining of the uterus.

The incurable condition is a common one, affecting an estimated 6 to 10 percent of women worldwide, according to the PCOS Association. Some 5 to 10 million women in the United States have the disorder, according to Ronald Feinberg, a reproductive endocrinologist who named the condition Syndrome O in his recent book, "Healing Syndrome O: A Strategic Guide to Fertility, Polycystic Ovaries and Insulin Imbalance" (Avery, $16.95).

Yet the problem often goes undiagnosed for a variety of reasons, according to the association, healthcare professionals who specialize in PCOS and women who have the syndrome.

Sometimes it's due to reluctance on the part of the women to talk about what's ailing them with their doctors.

"The symptoms are embarrassing. Most doctors are male, and women don't want to say, 'I have facial hair and acne, and I'm not getting my period,'" said Carol Arnold, who has the syndrome and is a spokeswoman for PCOStrategies, a nonprofit organization co-founded by Feinberg and dedicated to educating women about PCOS and motivating them to take steps to better control the disorder. Additional symptoms include insulin resistance, weight gain, miscarriages, thinning hair and cysts on the ovaries.

The condition can erode self-esteem and lead to depression.

"I was 50 pounds overweight and growing hair in all the wrong places, and I couldn't even get pregnant. I thought I was supposed to be a man," said Lesa Childers, a PCOS sufferer who has since been successfully treated for infertility and is a mother of three children, adopting her first and giving birth to her other two. Childers, a clinical social worker, is also co-founder and president of PCOStrategies.

PCOS can be difficult to diagnose because the symptoms can vary from woman to woman. For example, most sufferers are overweight, but the disorder has been found in women who are thin, said Scott Roseff, a reproductive endocrinologist who specializes in PCOS at the West Essex Center for Advanced Reproductive Endocrinology in West Orange. Some women with PCOS have monthly periods, even though irregular menses is a symptom, and not all PCOS patients have ovarian cysts.

Melanie Van Derveer, of Highlands, was diagnosed early on with PCOS after her periods stopped when her daughter turned 2. But she ignored the diagnosis at first because her lack of a variety of symptoms led her to believe she didn't have it. "He put me on birth control (to regulate the periods) and I threw that in the back of my head. I kept saying I don't believe him because I read in a book that everyone has a couple of these symptoms and I had one."

As in Dana P.'s case, doctors often fail to make the connection between seemingly unrelated symptoms and PCOS, said Roseff. "Women realize something is wrong with them, and they go to the doctor and the doctor is ignorant about it, which is really hard to believe but it's true." As a result, an unknowing physician will prescribe medication to treat acne, infertility, irregular periods and other symptoms without treating the PCOS, the underlying reason for the presence of those symptoms.

"Women need to take charge of their own health and their own destiny and demand a diagnosis," said Roseff. "What often happens is, the doctor pats the woman on the head and says, 'You have acne and irregular menstrual periods and facial hair growth, and the birth control pill can treat all of those.' That's not giving them a diagnosis. If (women) don't know they have PCOS, they don't know about the lifestyle modifications that are important" to treating the condition.

There's disagreement within the medical community over whether PCOS is genetically inherited. Roseff said published scientific literature on the condition shows many PCOS experts believe it's a genetic disorder and think there is one or several genes that cause the syndrome. "This does tend to run in families, and when mothers have PCOS, we do see an increased incidence of PCOS in their daughters."

Feinberg said he did think there is "probably an inherited predisposition" to developing the syndrome, explaining, "If either parent had an insulin problem, yes, you're at higher risk for developing PCOS." But he doubted the existence of a PCOS gene or group of genes, per se.

"It's hard to say it's a genetic disease because it hardly existed 70 years ago. I don't buy the (idea) that, all of a sudden, some new genetic disease has arisen. A true genetic disease usually affects a certain ethnic group. PCOS affects everyone from anywhere they come from in the entire world."

The exact root cause of PCOS remains unknown, even though the condition has been under study for decades, according to Roseff. But he said one of the more "common theories" is that PCOS may be grounded in insulin resistance, which happens when normal amounts of the hormone insulin that is secreted by the pancreas cannot remove glucose (sugar) from the bloodstream and put it into the body's cells to use for energy or to store it for future use.

Being overweight and physically inactive can worsen insulin resistance, which can develop into diabetes. While scientists disagree about whether there's a genetic component to PCOS, most doctors agree that making lifestyle changes pertaining to what women with PCOS eat and their level of physical activity are crucial to bringing their PCOS under control.

And changing one's lifestyle is not easy, as anyone knows who has tried to lose weight.

"If people are not willing to make significant changes, they will not be cured. I have seen people get rid of PCOS, but it took a great deal of diligence," said Feinberg. "There are scientific papers written that show if you lose between 5 and 10 percent of your body weight, that has a significant effect on your ovary functions."

"Our society wants a quick fix," said Roseff. "So a lot of doctors stick someone on a pill and say, 'Go home and, hopefully, you'll do better.' It's hard to have a proper diet and it's hard to exercise. A lot of people ignore it. But it's a critical component of the syndrome."

Once a proper diagnosis is made, the purpose of any medication that is dispensed is to treat the symptoms a particular woman has, such as acne, infertility or irregular periods. The healthful eating and exercise are going to help the body use insulin more effectively and lessen the insulin resistance, according to health experts.

"We're not talking about rocket science here," said Feinberg. "We're talking about people getting off their chairs and sofas and moving."

Roseff said he recommends that his patients start exercising "very slowly, walking a little bit or, if it's appropriate, swimming, which is low impact. Something that's going to help them start moving around and increase the metabolism."

Women with PCOS tend to get results when they reduce their total carbohydrate consumption and switch from sugary, refined, "white" carbs, such as processed white bread and potatoes, to complex carbs, such as whole grains, fruits and vegetables, according to the PCOS Association.

Van Derveer found this to be true in her situation.

"If I stay on the diet and exercise, the insulin will stay where it's supposed to," said Van Derveer, who follows a lower carbohydrate diet and takes a half-hour walk or performs some type of exercise nearly every day. She believes those tactics plus artificial insemination and taking Glucophage, a drug designed to increase the body's sensitivity to insulin, resulted in curing the infertility she experienced after the birth of her daughter, Lexi. Her son, J.D., was born almost two years ago. Then she got a huge surprise when she discovered she had gotten pregnant with her now 10-week-old son, Ryder, without any fertility treatments.

Before her second son was conceived, Van Derveer and her husband "were told we had a less than 1 percent chance we would get pregnant on our own and to schedule an insemination and go back on the Glucophage." When her periods stopped, she thought the PCOS had returned. Then Van Derveer took an at-home pregnancy test. It came back positive.

"I called the doctor and said I need to come right now for an ultrasound because I just don't believe it," Van Derveer recalled.

Lisa Visocky's situation illustrates how difficult it is to stick to a healthful diet and active lifestyle in trying to beat PCOS. Seven or eight years ago, her infrequent periods became regular when she lost about 120 pounds. But the Howell resident, who has battled infertility for years and is trying to get pregnant, gained back the weight and is having trouble finding time to set aside for exercise. "I'm heavy again right now, and I don't get my period. I tried to lose weight, but it just doesn't happen."

Lesa Childers' infertility led her and her husband to adopt their first child, thinking she would never get pregnant. Then, when the North Carolina native was diagnosed with PCOS, her doctor suggested she make some lifestyle changes, in part, to deal with the diabetes she had developed and to lose weight.

"My internist gave me a 1,600 calorie diet, and that felt realistic to me. I started walking. I never did anything too fancy. I just walked and did housework," Childers said. She kept going and was eventually able to have her second and third child. Like Van Derveer, she became pregnant with her third when she and her husband weren't even trying to conceive.

"I tell women to educate themselves as much as they can and not think of themselves as a genetic freak," said Childers, who offers coaching services to help women deal with their PCOS.

Learn more about PCOS:

PCOStrategies Inc.: (828) 508-8811; www.pcostrategies.org; info@pcostrategies.org; P.O. Box 914, Sylva, N.C. 28779.

Polycystic Ovarian Syndrome Association: (877) 775-PCOS; www.pcosupport.org; info@pcosupport.org; P.O. Box 3403, Englewood, Colo. 80111.

Copyright 2004 NJ.com. All Rights Reserved.

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