2 posts tagged “pcos”

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 Kat 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.

Kat 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 Kat 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."

Source: http://www.nurseweek.com/news/features/02-08/pcos.asp

tags: Kat carney, pcos, pcosupport.org, soulcysters.com

By John Morgan, Spotlight Health

With medical adviser Stephen A. Shoop, M.D.

	Kat Carney.

For millions of young women, "being late" doesn't mean they have poor time-management skills. A late or missed menstrual cycle can cause panic. But aside from a possible pregnancy, a missed period may actually be a sign of polycystic ovarian syndrome (PCOS), the most common hormonal problem among women of reproductive age. When Kat Carney, host of Discovery Health Channel's The Body Invaders, learned she had an ovarian cyst, she had never even heard of PCOS. Unfortunately, neither had her doctor. Or if he did, he failed to recognize her classic PCOS symptoms. "I didn't realize I had any problem because these symptoms were too easily attributed to other causes," shares Carney.

"My weight gain was because I didn't exercise enough. A few facial hairs and irregular periods were just wacky hormones. My doctor wasn't concerned with the cyst, so neither was I."

But her body began to tell her otherwise.

Over the next six years Carney's symptoms only got worse. She started losing the hair on her head while the facial hair increased, and she ballooned to 220 pounds. Desperate, Carney turned to another doctor, who ran some blood tests and did a sonogram which revealed that each of her ovaries had 30 cysts. It was only then that she learned she had PCOS.

PCOS basics

Kat Carney's frustration with the medical community is all too familiar to the millions of women who have PCOS. Very little is understood about the syndrome. Doctors don't know why an estimated 6-10% of reproductive age women contract the syndrome, although there seems to be a genetic predisposition that may be as high as 50% for daughters whose mothers are afflicted.

"Onset of the syndrome appears to be around puberty and tends to diminish with age, with ovulation starting again around 35," states Dr. Sam Thatcher, director of the Center for Applied Reproductive Science in Johnson City, Tenn.

An extensive Dutch study found that young women whose periods occur over 40 days apart don't get regular. "They don't grow out of it. And these girls are often at risk for PCOS," says Thatcher, author of PCOS: The Hidden Epidemic.

Thatcher advises that a young woman who has not had a period by age 16 should be evaluated because PCOS is one of the leading causes of infertility.

Symptoms of PCOS include:

• Ovarian cysts
• Irregular or absent monthly cycle
• Obesity or weight gain centered in the midsection
• Facial hirsutism (excessive hair growth)
• High blood pressure
• Acne
• Insulin resistance, elevated insulin, or diabetes
• Thinning of the scalp hair
• Infertility

According to Thatcher, PCOS is difficult for many doctors to diagnose because there are so many symptoms and not all women have all the warning signs. The three main forms of diagnosis are:

• Clinical diagnosis with the clinical triad of obesity, irregular cycle, and hair and skin problems associated with high androgen levels.

• Hormonal testing, including insulin and lipid panels.

• Ultrasound scan of the ovaries.

While the syndrome does not generally shorten a woman's lifespan, the many symptoms can seriously erode quality of life.

"Many women suffer intense feelings of isolation which lead to depression and eating disorders," details Thatcher, who is donating the proceeds of his book to PCOS advocacy and education groups. "PCOS threatens all things female. You get overweight. You have to shave. You get acne. And you can be infertile."

Heal thyself

The good news is there are effective treatments for PCOS. Most women are placed on birth control pills to regulate their hormones and anti-androgen medications to control the hirsutism. Fertility therapy typically includes the use of Clomid.

"My doctor put me on birth control pills and aldactone, an anti-androgen medication to combat the hirsutism," recalls Carney. "He said I'd have to take them until I was ready to try and have children."

But instead of feeling better, within weeks Carney was gaining more weight, losing more hair, and feeling more depressed. He explained she was gaining weight from eating fatty foods. Her depression was because she was obese, and the profuse sweating that she complained of was simply "hot weather."

Eight doctors later, Carney weighed 240 pounds and had had enough with "the exact same" diagnoses. Her depression was increasing, and her mood swings had intensified. She felt terrible, and she was determined to find out why.

So she turned to the Internet.

"I didn't have a choice. My doctors weren't giving me any other options," states Carney, who has started a Web site to help other women with PCOS. "I became a fanatic. I looked up every thing. I read every thing I could find, and I became my own advocate."

What Carney found was that the birth control pills were causing her weight gain, depression, and hot flashes. She stopped taking her prescribed medications and asked her doctor for Eulexin, a drug used successfully in Europe to treat excess body hair and PCOS. Because the medication wasn't FDA-approved for PCOS, her doctor refused.

Carney finally found a doctor who agreed to prescribe Eulexin as long as she came in for regular liver testing. She immediately began to feel better.

Eulexin worked for Carney, but Thatcher cautions it doesn't work for everyone, and that patients should always consult a physician. "Every patient is different with different symptoms. We need to tailor treatment to the individual needs of each patient."

Modern medicine

And Thatcher cautions that people should not assume PCOS is an illness associated solely with the ovaries and female hormones. In actuality, PCOS is a disorder of the entire endocrine system — the brain, pituitary gland, pancreas, liver, fat, and ovaries — which is responsible for maintaining homeostasis in the body.

"The most important advance in PCOS has been linking the syndrome to insulin resistance," explains Thatcher. "For some reason, the body seems to become deaf to the actions of insulin, so the pancreas speaks louder, making more insulin, which disrupts the body's equilibrium."

Recent studies indicate that as many as 50% of women with PCOS have insulin resistance and are at high risk for Type 2 diabetes. Because of the link to insulin resistance, many experts now advocate the American Diabetes Association's guidelines for a 250-500 reduction in calories. Exercise is also highly recommended.

"I read all the literature on the insulin connection. I knew I had to get my body well," explains Carney. "So I eliminated all refined carbohydrates and started going to the gym every morning and every night."

Six weeks later, the weight that she could never lose before began coming off. And her symptoms were remitting.

Over the next 14 months, Carney lost 90 pounds and eventually needed no medication at all.

"I feel better than ever. My weight has never been better, and I have no cysts," reports Carney. "My blood work indicates I don't have PCOS."

But if Carney gets stressed, skips working out, or eats poorly, her symptoms return.

Promising treatment

Another medication being used to successfully treat PCOS symptoms is Metformin, an insulin-altering drug that sensitizes the body to insulin and inhibits glucose production without risk of hypoglycemia. One of the side effects of Metformin is weight loss caused by gastrointestinal upsets.

"Metformin is an important medication for some, but not for all," advises Thatcher. "It got very popular on the Internet. Yet some women don't tolerate it well."

While PCOS cannot be cured, once properly diagnosed, it can usually be effectively managed. Even for infertility, Thatcher's clinic reports a fertility success rate of 90%.

"Just because you have PCOS, it doesn't mean you can't have children," says the 31-year-old Kat Carney. "Many can. I ovulate very regularly now."

As for children in her future, Carney says it's nice to know she has a choice. "The hardest thing has been getting used to being thinner," jokes Carney, who now weighs 150 pounds, yet still finds herself asking for a size 16. "I remember noticing men notice me for the first time. I ran home."

This is one race she might want to lose.