Hide and Seek
Subtle symptoms make polycystic ovary syndrome difficult to detect,
but alert nurses can help women with the disorder
spot the signs
By
Michelle Paolucci
August 2, 2002
Theresa Stevens, RN, had been looking forward to shopping in Singapore for weeks. Once there, she hurried into a clothing store and immediately started pawing through the merchandise in search of dresses. When none of the racks seemed to carry the size she was looking for, the shopkeeper pointed out one large item in the back of the store. Her heart sank. The shame stabbed her with the painful reminder that she was a large woman, a symptom of a condition called polycystic ovary syndrome (PCOS).
PCOS, originally called Stein-Leventhal syndrome after the two doctors who discovered the disease, is a disorder of the endocrine system with symptoms that range from decreased fertility and diabetes to hypertension and obesity.
According to the Polycystic Ovarian Syndrome Association, the disease affects as many as 10 percent of women worldwide, but many cases go undiagnosed because the symptoms are subtle. Patients may experience substantial weight gain in a short period of time, have a few odd facial hairs or a long menstrual cycle.
Nurses can be instrumental in helping patients detect signs of PCOS. Rather than passing off the symptoms as a consequence of lifestyle, nurses can suggest that patients request blood tests that can detect high levels of testosterone or abnormal levels of glucose and insulin-all markers for the disease. One nurse said she explains to her patients that PCOS is a serious condition that can affect their ability to conceive and even lead to heart disease and diabetes if left untreated.
"You would be surprised by how many women's physicians have said, 'Don't worry about it. This is perfectly normal. Having irregular periods is OK. Lots of women have irregular menstrual cycles.' Or, 'Let's wait. We'll put you on birth control pills,' " said Pam Malcolm, RN, clinical nursing coordinator for research for the department of endocrinology at the University of California, San Diego.
Malcolm said she tells PCOS patients that taking birth control pills can be a helpful treatment, but that some doctors hope the pill will simply make the symptoms disappear.
Hidden epidemic
But Malcolm also acknowledged that, unfortunately, the pill can mask PCOS symptoms. Stevens had been married a few years when she decided to try to have a child. She stopped taking the pill and waited a few months for her period to return naturally, but it never did. She mistakenly thought she was pregnant.
"Once I went off birth control pills, I never had another period on my own ever again," Stevens said.
When she discovered she wasn't pregnant, Stevens tried several doctors, who told her the problems would be solved if she could just lose 20 pounds. But Stevens was skeptical, suspecting something more serious was wrong. Luckily, she worked as a nurse at a fertility treatment center, where two doctors she knew finally confirmed her suspicions.
Her doctor, Samuel Thatcher, MD, Ph.D., said health care professionals typically either overlook the symptoms or see symptoms as isolated rather than related to one another. Women with PCOS often report that they have to see an average of eight to nine physicians before a PCOS diagnosis is made.
Stevens was diagnosed with the disease at 26. She started taking Clomid (clomiphene citrate), a fertility drug, and immediately became pregnant. Her son is now 8 years old.
Effective treatment
Although the pill may mask the disease as it did for Stevens, nurses such as Malcolm agree that it's an effective treatment after PCOS has been diagnosed. Without the hormones from the pill, PCOS causes a woman's body to produce excessive amounts of estrogen. The extra estrogen can thicken the lining of the uterus, which can lead to endometrial cancer. The pill also is beneficial because it decreases testosterone levels in the bloodstream. Too much testosterone can lead to excessive hair growth and acne.
The newest research on PCOS also has revealed a link between the syndrome and insulin resistance. Insulin resistance-a condition in which the body does not respond well to insulin, causing a buildup of the hormone in the blood-can be treated with insulin-sensitizing drugs. Many women with PCOS now are being treated with Glucophage, an insulin sensitizer, and these women report that they are getting pregnant and losing weight.
"But some are not," Malcolm said. "We just don't understand yet why it works [for some] and why it doesn't for others."
Scientists also are starting to suspect that the syndrome may have a genetic component. In a recent segment on NBC's "Today," Judith Reichman, MD, said that a woman has a 50 percent chance of developing the syndrome if her mother or a sister has it. Other research has shown a higher risk for women of Mediterranean descent or those who have fathers with hypertension or heart disease.
Habit of health
Although PCOS is starting to make headlines, some women are determined to accelerate awareness of the disease.
Kat Carney, a TV health reporter diagnosed with PCOS, remembered when she stepped on the scale during a doctor's appointment several years ago. It registered at 240 pounds. The last time she checked, it had been 150. In disbelief, she told the nurse, "There is something wrong with your scale." The nurse stepped on the scale to check it, and it was accurate.
Carney was shocked. Other oddities then started to make sense. Her hair had been falling out, she was perspiring more than usual and her clothes felt tighter. Ultrasounds showed that her ovaries were covered with cysts, and she was immediately diagnosed with PCOS.
Her doctor prescribed medications, but Carney was determined to learn more about the disease on her own. Using the Internet, she started educating herself and began sending e-mails to other women with PCOS. She claims today that this support from the women on the Web was key in helping her to gain control of PCOS.
It wasn't until she discovered what she calls her "habit of health" that she stopped having PCOS symptoms.
"I didn't have a lifestyle that promoted health. I ate fast food, stayed up too late, was way too stressed out. So, I got off the medications and I got online," she said.
She started on a relatively unknown drug called flutamide, a medication she discovered in a French journal. The drug usually was used for men with prostate cancer.
Then, Carney started exercising and changing the way she ate. "I'd rather eat broccoli than take a pill," she said. She cut down on carbohydrates and increased the amount of fresh vegetables and lean meats she was eating. Her final step to health, she said, was taking control of the amount of stress in her life.
"I made it a habit to turn the TV off at 7 p.m., and I made sure I got enough sleep. I was at the gym at 5:30 every morning," she said.
Fourteen months later, she had lost 90 pounds and was virtually symptom-free. Then, she was offered a job on a start-up channel called Discovery Health, where she starred in her own show: "The Weigh We Were." She has been off medication for six years.
Carney also hosts her own Web site (www.soulcysters.com), which boasts about 750,000 visitors a month and 7,500 registered members. Now a health reporter for CNN, Carney credits her experience with PCOS as a jump start to her career.
"Obese all of my life and now I am a health and fitness correspondent," she chuckled. Although not everyone may land jobs like Carney, she offers this hope to other women like herself: "Don't take 'no' from a doctor. Make sure you get the right tests and as much information as you can."