A recent study in the Journal of the Endocrine Society found that PCOS patients are more likely to be unhappy with their medical care than their non-PCOS-suffering counterparts. PCOS, short for Polycystic Ovary Syndrome, is characterized by ovaries enlarged with an unusual number of follicles, irregular periods, and hormonal side-effects like acne, excess body hair, and obesity. It affects around five million people in the United States alone, but it's incredibly hard to diagnose, and so, much like other reproductive issues, patients who have it typically wait a long time before finding treatment that works.
The study, which surveyed 332 U.S.-based women with and without PCOS, found that PCOS patients were less likely to trust their primary care provider's (PCP) opinion than women without it. "Patients with PCOS felt that the PCP spent less effort and were less qualified to treat PCOS health concerns than general health," write the study authors.
Women with PCOS were also more likely to report getting into arguments with their health care providers than women without it. Ultimately, the study concluded that women with PCOS weren't being adequately supported in their care, and advocated for improved provider-patient relationships in managing the lifelong disorder. There is no cure for PCOS, and the only treatment options are adjusting hormone levels synthetically, which, as anyone who has ever been on hormonal birth control can attest, involves a lot of experimenting. PCOS sufferers are also at a greater risk for diabetes, high cholesterol, and fertility problems.
Part of the problem is that we simply don't have a lot of information about PCOS. The female reproductive system is notoriously under-researched and doctors, especially outside the field of gynecology, tend to be undertrained in spotting the condition, so disorders like it and endometriosis are difficult to find good treatment for. For example, there are no real guidelines to determine whether a person does or doesn't have PCOS. There's no test for it and patients who have it experience different combinations of symptoms. Even the term "polycystic" is a bit of a misnomer; the small bumps on the ovaries that show up in the ultrasounds of PCOS patients aren't actually cysts. Frequently, doctors only arrive at a PCOS diagnosis when they've ruled out everything else.
"When [patients] say they argue with their physicians, I think the arguments are based on the fact that they have become more knowledgeable than their physicians in this area," Dr. Andrea Dunaif, chief of endocrinology, diabetes, and bone diseases for the Mount Sinai Health System and the Icahn School of Medicine in New York City told Reuters. She surmises that patients are often put in the position of self-diagnosing using the internet.
Thanks to the so-called "research gap," women's pain is often ignored, minimized, or dismissed by physicians. And the frustration and internalized shame this breeds can quickly give way to comorbidity with psychological disorders like anxiety and depression. Given this specific set of challenges, it makes sense that PCOS patients end up locking horns with their doctors.