It's more than just fertility. Here's what you need to know about the serious (and difficult to diagnose) condition that increases your risk for heart disease, cancer, stroke, and diabetes.
Polycystic ovary syndrome (PCOS) is the most common endocrine disorder and the most common cause of infertility, affecting 9 to 18 percent of women worldwide. But despite being super common and super serious, it takes an average of two years—and three different doctors—to diagnose PCOS symptoms, says a new study in the Journal of Clinical Endocrinology & Metabolism.
PCOS is a medical condition wherein women have menstrual problems (usually irregular periods) and an excess of male hormones surging through their body. In addition to being a common cause of infertility, it also increases your risk for a whole slew of serious diseases, including diabetes, high cholesterol, obesity, and depression. (Find out what ob-gyns wish women knew about their fertility.)
So, why is it so hard to diagnose? For starters, PCOS symptoms manifest differently in different women, says Anuja Dokras, M.D., Ph.D., lead study author and director of the Penn PCOS Center at the University of Pennsylvania. Diagnosis, which can happen as young as 11 but is most common in the early 20s, is based on having at least two of three criteria, she explains: irregular periods, high male hormones or abnormal hair growth (usually on the upper lip or chin, or near the belly button and inner thigh), and an increased number of follicles—aka the fluid-filled sacs which contain eggs—on the ovaries (revealed via an ultrasound).
But there are differences based on age (acne and irregular periods are also features of puberty) as well as ethnic groups (some races have more body hair) so diagnosis isn't always simple. Plus, the symptoms are often relevant to multiple specialists, since you'll see a dermatologist for acne and a gynecologist for menstruation issues and not think to cross-share the information, Dr. Dokras points out.
While PCOS is hard to diagnose, it's incredibly important that it be diagnosed ASAP. Why? PCOS increases your risk of four of the 10 leading causes of death in America: heart disease, cancer, stroke, and diabetes.
In fact, more than half of women with PCOS will have diabetes or pre-diabetes before they turn 40 and are four to seven times more likely to have a heart attack than women of the same age without PCOS. Sufferers are two to five times more likely to develop metabolic syndrome—that's the increased blood pressure, blood sugar, and cholesterol that often lead to deadly diseases—than women without the fertility issue. Nearly half of PCOS sufferers are more depressed and one-third are more anxious than women without PCOS. The hormone imbalance also makes your bones weaker, increasing the prevalence of osteoporosis. And while many women with PCOS have a harder time getting pregnant, those who do are then at a higher risk for complications, including gestational diabetes, preeclampsia, and preterm delivery.
Phew—that's a lot of risks. But how does a fertility issue mess with your health so badly? Your first instinct is probably to blame the out-of-whack hormone levels, but it's not quite that easy. A study in Fertility and Sterility found that women with PCOS had a higher risk of metabolic syndrome whether or not they had excessive levels of male hormones.
Weight is definitely a factor, considering anywhere from 35 to 60 percent of women with PCOS are overweight, carrying fat especially around their stomach, which is known to up your risk for heart disease. But even lean women with PCOS have a higher risk of diabetes and higher cholesterol compared to women without the issue, says Polish research.
Genetics certainly play a factor, Dr. Dokras says. In fact, according to the PCOS Awareness Association, your risk is increased if your mother or sister also has PCOS. But the jury's still out on to what extent DNA factors in, she adds.
The short of it: Docs don't know exactly why, but they do know PCOS significantly increases your risk for some serious diseases. And unfortunately, there isn't a cure. But you can mitigate other factors that simultaneously up your risk for the deadly diseases.
Lifestyle intervention is the strongest line of defense, according to pretty much every study on the topic. Quitting smoking, cleaning up your diet, and losing weight can all help reduce the symptoms of PCOS. The key is really in weight loss—science says sufferers at a normal weight have a lower risk for type 2 diabetes than those who are overweight or obese. In fact, a study in the North American Journal of Medical Sciences found women with PCOS who lost weight not only reduced their risk of type 2 diabetes and heart disease, but 63 percent regained normalcy in their menstrual cycle and 12 percent became pregnant over just three months. Scoring at least six hours of sleep can also help reduce the risk of diabetes and infertility.
So how do you know if you're at risk? If you are overweight; if you have irregular periods; abnormal hair growth on your face, stomach, or inner thighs; a history of ovarian cysts; or family members with PCOS; it's definitely worth talking to your gynecologist. If your doc's concerned, she'll likely order a blood test and ultrasound and go from there.
For those diagnosed with PCOS, Dr. Dokras' study found that only 15 percent of women were happy with the info they received, while 90 percent wanted more educational material and 70 percent were interested in patient workshops and groups. So, if you do have the condition, check out the PCOS Awareness Association, which provides info on local support groups and medical resources.