Polycystic ovary syndrome affects up to 18 percent of women, making it the most common endocrine disorder among women of childbearing ages. PCOS is characterized by high levels of the male hormone testosterone, leading to disrupted ovulation and infertility. Despite the high prevalence, PCOS is often overlooked by medical professionals. A recent international survey of over 1,300 women with PCOS showed that 50 percent of women saw three or more health professionals or waited for more than two years before receiving a PCOS diagnosis. I was one of them.
[See: 8 Things You Didn’t Know About PCOS.]
I knew something wasn’t right when, out of the blue, I started gaining weight — a rapid amount of weight — despite regular exercise and an appropriate caloric diet. Searching for the reason, I saw three different doctors who told me that I “just had hypoglycemia,” or my favorite, “watch your diet.” The weight gain continued. Trusting my gut, I finally sought out a physician who specializes in PCOS and women’s health. By the time I was diagnosed with PCOS, I had gained more than 40 pounds and was on the verge of having prediabetes. I was angry with the other doctors I saw prior who should have been able to diagnose me.
Early detection and treatment of PCOS is crucial. If not well-managed, PCOS can cause weight gain, infertility, dermatological symptoms like hair loss, excessive body hair growth and acne. Mood disorders such as eating disorders, anxiety and depression are also common. Over time, PCOS can lead to diabetes and other chronic diseases. Clearly, more attention needs to be given to this common condition.
Here are five main reasons why I think PCOS gets ignored by the medical community:
Inappropriate Name
PCOS was misnamed. Despite the fact that it’s called poly “cystic” ovary syndrome, women with PCOS don’t have cysts. Instead, they have tiny immature follicles that surround their ovaries. Having a misleading name has contributed to confusion regarding its diagnosis. While it’s been proposed by some to change the name of PCOS to one that reflects more of the metabolic aspects, a new name now would create only more confusion. Awareness of this condition has finally begun as nonprofit PCOS organizations and patient advocacy groups have been established. Instead of spending time focusing on a new name for PCOS, efforts should be spent increasing awareness and education, as well as finding a cure for it.
[See: Diet and Lifestyle Advice for Polycystic Ovary Syndrome.]
Lacking Good Diagnostic Criteria
Confusion exits about how to properly diagnose PCOS. Currently, there are three different sets of diagnostic criteria used to evaluate women suspected with PCOS. Studies involving PCOS women have used one of these different sets of diagnostic criteria, making it difficult to compare studies.
An agreed upon criteria, referred to as the Rotterdam Criteria, states that a woman has PCOS if she has at least two of the following three symptoms:
1. Irregular periods (intervals of more than 40 days) or no periods.
2. Clinical signs (acne, excess hair) and/or blood tests showing high levels of testosterone.
3. Polycystic appearing ovaries on an ultrasound, with exclusion of other causes.
This criteria, though, has its faults. Testing for elevated testosterone levels, for example, isn’t a very reliable blood test. In addition, some women with PCOS will experience monthly periods. Now that’s it been shown that women with PCOS face lifelong health risks, how are women post-menopause to be diagnosed? A better diagnostic test or set of criteria is needed.
Not All Women With PCOS Are the Same
While women with PCOS may have similar symptoms, they can vary in their severity and presentation. This variation in women can result in medical professionals overlooking a PCOS diagnosis by focusing on treating the problem women most want help with. For example, a woman may have hair on her chin that won’t go away, so she seeks the advice of a dermatologist who treats the excess hair. The same woman may also seek the advice of her gynecologist because she stopped getting her period and is trying to get pregnant. Better education and communication between providers is needed to bridge the gap.
[See: 9 Ways Your Hair Reflects Your Health.]
Lack of Funding
Since its discovery in 1935, doctors still don’t know what exactly causes PCOS or the best ways to manage or prevent it. Unfortunately, advancements in understanding and managing PCOS have been limited, as the National Institutes of Health has instituted budget cuts. Currently, PCOS receives less than .01 percent of funding from the NIH. Without sufficient government funding, researchers won’t have the resources to study PCOS and provide advancements in care.
It’s a Woman’s Condition
I wonder: If PCOS were a man’s condition, would it be so under-recognized and underrated? Or would more funding and aggressive action be taken to find good treatments or perhaps a cure for it?
More from U.S. News
8 Things You Didn’t Know About PCOS
Diet and Lifestyle Advice for Polycystic Ovary Syndrome
9 Ways Your Hair Reflects Your Health
Why Is PCOS Ignored? ? originally appeared on usnews.com
