In June 2016, Star Wars actress Daisy Ridley went public with her PCOS experience by posting a photo with the following caption on her now-deleted Instagram account:
“At 15 I was diagnosed with endometriosis. One laparoscopy, many consultations, and [eight] years down the line, pain was back (more mild this time!) and my skin was THE WORST. I’ve tried everything: products, antibiotics, more products, more antibiotics, and all that did was left my body in a bit of a mess. Finally found out I have [polycystic] ovaries, and that’s why it’s bad.”
Ridley isn't alone in struggling to make sense of her symptoms. A recent international study of the “diagnosis experiences” of women with polycystic ovarian syndrome, or PCOS, the largest of its kind, called attention to common obstacles that women face in being diagnosed with PCOS. The study found that nearly half of women with PCOS visit three or more health professionals before receiving their diagnosis. And receiving a diagnosis takes more than two years for one-third of women with PCOS.
The most common endocrine disorder in women, PCOS affects up to an estimated one in ten reproductive-age women. Given the sheer numbers, the difficulty in diagnosis should be a cause for alarm. Unsurprisingly, women whose diagnosis took more than two years were less satisfied with their diagnosis experience than women who were diagnosed in less time, the study revealed. And most women were disappointed by the lack of information that they received at the time of their diagnosis.
Dr. A. Nicky Hjort, M.D., OB-GYN, tells us, "PCOS is still a relatively poorly understood condition, and if you have ten different doctors trying to diagnose PCOS, you’d actually be quite surprised with how many different answers you would get. It’s difficult to diagnose. It’s difficult to understand." This is in part because observable symptoms of PCOS—acne, weight gain, hair loss or unwanted growth, tiredness, depression—resemble the effects of stress, poor diet, and a sedentary lifestyle.
But there are plenty of other symptoms of PCOS, which vary from woman to woman, including irregular ovulation, anovulation (no ovulation), polycystic ovaries, androgen (a male sex hormone) excess, insulin resistance, and metabolic dysfunction. But as Dr. Hjort explains, it's not a simple cut-and-dry diagnosis. "PCOS is not like hepatitis where you run the panels and the test is positive. It’s a spectrum, so some patients may have pieces of the puzzle, some patients may have all of them, some patients may have ultrasound findings, some may have lab imbalances."
In the end, a diagnosis of PCOS is a judgment call on the part of a doctor—a call many may not simply be informed enough to make. Studies about PCOS and its diagnosis suggest that too often, health professionals misunderstand the disease and do not recognize symptoms as indicative of PCOS. In fact, the U.S. National Institutes of Health Office of Disease Prevention has called for increased awareness of PCOS among the public and health professionals.
Previous studies have also found that many women are let down by the lack of PCOS-related information before and after their diagnosis. Interviewing ten Australian women with PCOS, researchers found that their doctors knew little about PCOS. Insufficient information, feeling dismissed by healthcare practitioners, and receiving a late diagnosis in spite of ongoing symptoms were reported as frustrating yet common experiences of women with this “hidden disease.” A 2013 study, which assessed online PCOS support group membership, also reported that many of these women “encountered healthcare professionals who were unsupportive and lacked an understanding of PCOS.”
Many women are eventually diagnosed with the condition because of their own suspicion rather than their doctor’s suggestion. In an article for Verily, Emily Mitchell described her diagnosis experience: “If PCOS affects up to 10 percent of all women, how had this never been discussed with me during a trip to the gynecologist? My own questioning is what led to my diagnosis. That's scary.”
Yet, along with self-advocacy, women with PCOS need their concerns to be listened to and taken seriously. As Dr. Hjort explains, along with not being aware of PCOS, remember that doctors are often overworked and overscheduled. It's not an excuse, but if you're concerned that you might have PCOS, be direct with your physician. Dr. Hjort says to ask questions and simply state, "'I think I may have PCOS. What are your thoughts on that? And what can we do about it?'"
PCOS affects women throughout their lifespan, and they must come to terms with having a chronic condition. In addition to dealing with physical symptoms, women with PCOS also note effects on their emotional health and social lives. These common concerns include lack of social support, dissatisfaction with their physical appearance due to androgen excess or weight gain, and worries about their future health.
As PCOS has no cure, doctors often prescribe medication to merely address symptoms. A study of 657 women found that most respondents were disappointed by oral contraceptives or ovulation-inducing medications as standard treatments. And yet these drugs have been conventional PCOS treatment mainstays for over 40 years. In fact, 99 percent of the study participants expressed interest in an alternative treatment if their condition “could be safely and effectively helped by something else besides fertility drugs or birth control pills.”
When it comes to managing PCOS, Dr. Hjort advises, "The first, the best, the safest, and the cheapest is always diet and exercise! Patients with PCOS have insulin resistance which responds nicely to increased metabolic activity. So you get your heart rate, energy, and exercise up. You start eating right, and it will make a huge difference, which cannot possibly be overstated or overvalued. Sometimes a ten-pound weight loss can be the difference between a patient getting pregnant on her own versus needing advanced kinds of fertility technologies." Other natural ways to manage PCOS symptoms include taking daily vitamins, getting quality sleep, and relaxing.
Women face many hurdles, but getting timely and accurate diagnoses and having access to safe treatment options should not be among them. Women who suffer from PCOS can be its most powerful advocates—whether by sharing their stories and information with friends or, like Ridley, taking to social media. With that we can hope that the larger medical community will take note.
Photo Credit: Marlena Pearl Photography