One in every 10 women has polycystic ovary syndrome, a disorder that is the leading cause of female infertility and a risk factor for diabetes, cancer, heart disease and other life-threatening illnesses. Yet half of all women with PCOS are undiagnosed.
"Polycystic ovary syndrome is an extraordinarily prevalent lifelong disorder that many women don't know they have and many physicians and practitioners don't know how to manage," says Dr. Ricardo Azziz, a professor at Georgia Regents University in Augusta, Georgia, and founder of the Androgen Excess and PCOS Society.
What is PCOS?
The exact cause of PCOS is unknown. But experts believe the syndrome may involve a combination of disorders associated with an excess of male hormones (androgens) and irregular ovulation, says Azziz, an internationally recognized researcher in the field. He estimates that 70 to 80 percent of PCOS cases are genetic. Some studies have found that if a mother has PCOS, there is a 50 percent chance her daughter does, too.
The name -- polycystic ovary syndrome -- can be misleading because PCOS impacts far more than a woman's ovaries. "Polycystic ovary syndrome is more than a cosmetic- or fertility-related issue. It's a condition that affects health across the board. This is not just one disorder, and not all patients are the same," Azziz says.
Symptoms include irregular menstrual cycles, infertility, excess facial and body hair, male pattern baldness, severe acne, small cysts (fluid-filled sacs) on one or both ovaries, insulin resistance, anxiety and depression, and weight gain. There is no cure for PCOS, and treatment focuses on managing and slowing the progression of symptoms.
PCOS is responsible for 70 percent of infertility issues in women who have difficulty ovulating, according to the PCOS Foundation. The condition can develop in pre-teens, teens and post-menopausal women, as well.
Without proper management, PCOS can lead to other serious medical conditions. An estimated two-thirds of women with PCOS will develop metabolic dysfunction, Azziz says. Women with PCOS constitute the largest group of women at risk for developing cardiovascular disease and Type 2 diabetes. More than 50 percent of women with PCOS will become diabetic or prediabetic before age 40, reports the National Institutes of Health. They're also at greater risk for endometrial, ovarian and breast cancer.
Although a large percentage of obese women have PCOS, not all women struggling with obesity have the condition, Azziz notes. Thin women can have PCOS, too.
Broken Health Care System
Sasha Ottey founded PCOS Challenge, Inc., in Atlanta, Georgia, after experiencing disappointment with the availability of support and information following her diagnosis. She sought medical help due to irregular menstrual cycles. Her gynecologist gave her an informational pamphlet and said to come back when she wanted to get pregnant. Her endocrinologist told to lose weight, and come back in six months. She tried seeing a nutritionist to help with the weight loss, but was denied insurance coverage because she wasn't diagnosed with diabetes.
"I felt let down by the health care system," recalls Ottey, executive director of PCOS Challenge, Inc. "I did my own research and found there were many other women and girls struggling and searching for answers and support where there was none. I decided to take matters into my own hands."
Today PCOS Challenge, Inc. offers education and support to people around the world, hosts awareness symposiums across the country and produces radio and television shows featuring leading experts in the field.
"The lack of awareness is so profound that it can take up to seven doctors and many years before some women get a diagnosis," said Ottey. "There's a huge disparity when it comes to diagnosis, research and support. We want to make polycystic ovary syndrome a public health priority."
The Emotional Toll
Gretchen Kubacky, one of the few psychologists in the nation who specializes in PCOS, assists women dealing with the "emotional fallout" of having the condition. Many have been struggling with infertility, weight gain, hormone imbalances and other medical issues for years without a definitive diagnosis.
"By the time they get to my office, many show signs of depression," Kubacky says. Depression is four times more common in women with PCOS, and a third of all women with PCOS meet the criteria for major depression, she says. They are also more likely to experience anxiety, low self-esteem, suicidal thoughts and eating disorders.
Many struggle with poor body image. "They have facial hair, male pattern balding and hair on their body where it doesn't belong. Many are significantly overweight. This is not the American ideal of what a woman should like. The body shaming is sort of a micro aggression that gradually erodes a person's psyche," Kubacky says.
The lack of awareness among medical practitioners compounds the problem. "There's a lot of blame in the medical arena. Doctors who aren't aware of PCOS think people just can't control themselves or aren't working hard enough to lose weight. Yet these women exercise and diet constantly, and they still weigh 200 pounds," she says.
Given that PCOS impacts millions of girls and women around the world, Azziz believes more needs to be done to increase funding for research, identify targeted treatments and explore the genetic component of the disorder. Experts are also exploring the possibility of re-naming the condition to better reflect its impact on the overall health an individual. "This is a disorder that needs a tremendous amount of attention and research," he says.