'Just lose weight': Women with PCOS are going untreated due to 'weight-centric health care'
As a teenager, Pamela Everland suffered from irregular and excessively heavy periods that lasted for six to eight weeks. At 19-years-old, a gynecologist finally placed her on birth control to regulate her periods, but new symptoms arrived; Everland experienced rapid weight gain throughout her 20s despite committing to various diets, including Weight Watchers and the low-carb Atkins diet, and suffered from acne well into her 30s.
But at every doctor’s visit, she was just told to lose weight.
“I told my primary care physician that I hate coming into the office because I feel like it's weight-focused,” she says.
So, she stopped going to the doctor and suffered in silence.
Instead, Everland began conducting her own research and discovered that her symptoms aligned with polycystic ovarian syndrome (PCOS), an endocrine condition in which a woman’s ovaries and/or adrenal glands overproduce male sex hormones called androgen.
She pushed her primary care physician to test her hormones, which required going off birth control for three months to get an accurate reading.
In that three month timeframe, every hormonal symptom the birth control had suppressed came back. Everland experienced acne all over her body, hair loss on her head and excess hair growth on her chin. “I was growing a goatee because I couldn't keep up with plucking,” she says.
Her blood work showed high testosterone, inflammatory markers and insulin and imbalanced hormones, all indicators of PCOS.
Everland finally received a diagnosis of PCOS at age 38 − nearly three decades after her first period.
What is polycystic ovarian syndrome (PCOS)?
PCOS affects 8%-18% of reproductive-aged women. On average, women visit three or more health professionals before a diagnosis is established. And, the World Health Organization estimates that up to 70% of women affected by PCOS remain undiagnosed worldwide.
Weight and gender bias play a crucial role in this diagnostic delay, as women with PCOS often suffer from weight-centric health care, according to Angela Grassi, a registered dietitian based in Philadelphia and founder of the PCOS Nutrition Center. In some cases, doctors will require patients to lose weight before offering other effective treatment options, despite the fact that hormonal imbalances associated with PCOS make it difficult to lose weight.
Medical weight bias and getting a diagnosis
Everland, now 48, says that medical weight bias has impacted her throughout her entire life, causing her to delay appointments with primary care doctors and specialists.
In 2020, during COVID-19 lockdowns, Everland was alone in the hospital for emergency hernia repair surgery. But instead of addressing the health issue at hand, the surgeon walked into her hospital room and told her she needed bariatric surgery or else "her obesity would kill her."
“I told him (he didn’t) understand, I have PCOS,” Everland says. “He said I was using that as an excuse to be fat. I was there for a hernia, and he wasn’t even listening to what’s wrong with me.”
Everland is not alone.
Grassi, who runs the PCOS Nutrition Center, went to three doctors with the same symptoms – unexplained weight gain and acne – and a hunch that she had PCOS before a specialist administered the proper tests for the condition.
She first experienced symptoms of PCOS at age 24, including rapid weight gain, hair loss and unusual acne breakouts on her chin. This prompted her to schedule an initial doctor’s appointment, but her concerns were overlooked as she lacked the hallmark symptom of irregular or missed periods. Another doctor told her the symptoms would likely subside once she "lost the extra weight."
Finally, one year after her first visit, Grassi booked an appointment with Dr. Katherine Sharif, a women’s primary care specialist, who tested her hormone levels for PCOS, took a detailed medical history and properly diagnosed her.
Grassi says it’s extremely common for doctors to tell patients that their PCOS will “go away” or get better if they lose weight. PCOS is also a leading cause of infertility in women, but some clinics won’t perform egg retrievals on patients unless they’re below a certain BMI.
Disregarding patients’ concerns about their PCOS symptoms can result in adverse health outcomes. If PCOS is left untreated, women are at increased risk of high blood pressure, cardiovascular disease, gestational diabetes and high cholesterol. Women with PCOS may also be at a greater risk for type 2 diabetes if they experience insulin resistance, in which blood sugar levels may rise.
According to Grassi, weight stigma and difficulty maintaining a stable weight have contributed to a high prevalence of eating disorders in the PCOS community.
“There's so much shame with PCOS especially if you're in a bigger body because you have these visible symptoms you can't hide and you don't fit into society,” Grassi says. “A lot of women internalize it (and) can’t accept themselves.”
Patients who are weight-shamed or dismissed may postpone or forgo future medical care altogether because of anxiety associated with past experiences of medical weight bias. This is a growing problem in the U.S. as approximately 70% of the population is overweight or obese and conditions are likely to go undiagnosed, preventing early intervention and treatment.
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'Health at every size'
Grassi was trained under the philosophy “Health at Every Size,” which emphasizes that you can support health without focusing on weight loss.
However, few medical schools offer training that integrates body diversity into clinical care and dismantles weight bias.
Recent advances have progressed in the past year, including the addition of weight bias to the PCOS diagnostic guideline report. “They specifically said not to use the terms 'overweight' or 'obese' because it is very stigmatizing language, and to ask permission to weigh (patients),” Grassi says.
However, there is still a long way to go in improving the quality of PCOS care. Grassi recommends that patients ask providers for the evidence behind claims that weight loss will reduce PCOS symptoms.
“We don’t have any long-term studies about what happens after five years (on a diet) or after somebody stops one,” Grassi says. “Most people regain the weight that they’ve lost. It’s just a physiological response to restriction. So, what does that do to PCOS? No one’s looked at that.”
Grassi also encourages patients to ask doctors the tough questions when seeking care for PCOS symptoms. Her favorite questions include: “What would you say to a thin person with PCOS? What advice would you give them?”