It is the most common endocrine disorder in women, the leading cause of infertility, and the most under diagnosed women's disease in the United States.
It is the most common endocrine disorder in women, the leading cause of infertility, and the most under diagnosed women's disease in the United States. Affecting an estimated five to ten million women in the United States, PCOS, or Polycystic Ovary Syndrome is characterized by a myriad of seemingly unrelated symptoms like weight gain, irregular periods and excessive facial hair. Scarier still, women with PCOS are seven times more likely to have heart disease, 40% will develop Type 2 Diabetes, and are at a higher risk for endometrial cancer. And most women don't even know they have it.
Only about 25 percent of women with PCOS have been diagnosed, largely because researchers and doctors have only recently begun to understand the causes. PCOS is an endocrinological problem, one that researchers believe has its roots in how insulin is metabolized in the body.
Symptoms of PCOS include:
o Ovarian cysts
o Irregular or absent monthly cycle
o Obesity or weight gain centered in the midsection
o Hirsutism (excessive hair growth)
o High blood pressure
o Insulin resistance, elevated insulin, or diabetes
o Thinning of the scalp hair
Part of the problem 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.
By the mid 1990s, researchers, including Penn State's Dr. Richard Legro, began to make a connection between the symptoms. "PCOS is one of the most common and least understood endocrine disorders," says Legro, who operates the only clinic in the country dedicated solely to the improvement and care for patients with polycystic ovary syndrome.
"Unfortunately, many physicians aren't familiar with it and ignore or misdiagnose it, although there is now greater awareness of it among both patients and physicians." In addition, Legro and the country's other leading 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 a 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. Unfortunately, the heavier you are, the more insulin you produce. But the overproduction of insulin also makes it difficult to lose weight, which causes other medical problems.
Getting a Diagnosis
Many women do not realize that regularly missed periods or an occasional ovarian cyst may be a sign of PCOS. 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. Sadly, 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.
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.
Because there are so many different symptoms, getting an accurate diagnosis can prove difficult. In fact, the average woman with PCOS will see four doctors in seven years before beginning treatment. Testing includes getting a patient history that generally involves obesity, irregular cycles, and hair and skin problems associated with high androgen levels, hormonal testing, including insulin and lipid panels, and an ultrasound scan of the ovaries.
Is There a Cure For PCOS?
There is no cure, but there is however, hope now that researchers are beginning to understand the role that insulin plays in the syndrome. Most women are placed on birth control pills to regulate their hormones and anti-androgen medications to control the hirsutism. The most common treatment is a drug called Metformin, marketed as Glucophage, which 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.
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, in the last year, there has been an explosion of new PCOS information. That includes articles in major magazines, newspaper reports and several new books on PCOS.
Since women with PCOS do not ovulate regularly, they usually take fertility drugs to regulate their ovulation. The most common drug used to induce ovulation in women with PCOS is clomiphene citrate (Clomid®). Women with PCOS who are not successful in becoming pregnant using clomiphene may switch to using Injectable hormones, known as gonadotropins. Some women who do not conceive using the drug alone may combine it with intrauterine insemination using their partner's sperm or some may need to use in-vitro fertilization to achieve pregnancy.
Some infertility clinics report a fertility success rate of 90% with women with PCOS.
"These days," says Carney, "I have loads of energy, and I feel much more in control. I don't feel burdened" at all by the PCOS. I do watch what I eat, and now I'm back on my workout regime after many months off. I read everything there was on the web on PCOS - whether it made sense to me or not. I made my doctors read it, too. Even now, I feel like I can't read enough. Another thing that made a difference was the realization that I could control - to a large degree - how I "experienced" PCOS. I could have continued to suffer with it, but I opted to put up a good fight."
Angela Best-Boss and Evelina Weidman Sterling, authors of Living with PCOS with Richard Legro MD (Editor)