During her teenage years, Pamela Everland dealt with irregular and extremely heavy menstrual cycles lasting six to eight weeks. At the age of 19, a gynecologist prescribed birth control in an effort to manage her periods, but this led to new issues; Everland faced significant weight gain in her 20s despite trying several diets, including Weight Watchers and Atkins, and dealt with acne into her 30s.

However, every time she visited the doctor, the only advice given was to lose weight.

“I conveyed to my primary care doctor how much I disliked visiting because everything felt weight-focused,” she shares.

Ultimately, she decided to stop seeking medical care and endured her issues quietly.

Everland took the initiative to research her symptoms and found that they matched those of polycystic ovarian syndrome (PCOS), a hormonal condition where a woman’s ovaries and/or adrenal glands produce excessive male hormones known as androgens.

She insisted that her primary care physician conduct hormone tests, which meant halting her birth control for three months to ensure accurate results.

During those three months, all the hormonal symptoms suppressed by birth control resurfaced. Everland experienced widespread acne, hair loss, and excessive facial hair growth. “I felt like I was growing a goatee because I couldn’t keep up with plucking,” she recalls.

Her blood tests revealed elevated testosterone levels, inflammation, insulin issues, and hormonal imbalances, all signs of PCOS.

At age 38, she finally received a PCOS diagnosis, nearly 30 years after her first period.

Understanding Polycystic Ovarian Syndrome (PCOS)

PCOS impacts roughly 8% to 18% of women of reproductive age. Typically, women seek the help of three or more healthcare providers before receiving a diagnosis. The World Health Organization estimates that up to 70% of women dealing with PCOS worldwide remain undiagnosed.

Weight and gender biases significantly contribute to the delays in diagnosis. Women with PCOS often face weight-centric healthcare, according to Angela Grassi, a Philadelphia-based registered dietitian and the founder of the PCOS Nutrition Center. Some doctors may insist that patients lose weight before providing effective treatment alternatives, despite the hormonal imbalances associated with PCOS that hinder weight loss.

The Influence of Medical Weight Bias on Diagnosis

Now 48, Everland shares that the bias against weight in medical settings has influenced her life continuously, causing her to postpone visits to doctors and specialists.

In 2020, while hospitalized for an emergency hernia repair during the COVID-19 lockdowns, she was alone and confronted by a surgeon who failed to address her immediate concern. Instead, he insisted that she needed bariatric surgery, warning her that “her obesity would be fatal.”

“I explained that I have PCOS,” she states. “He dismissed it, suggesting I used that as an excuse for my weight. I was there for a hernia, and he completely disregarded my actual health issues.”

Everland’s experience is not unique.

Grassi, who operates the PCOS Nutrition Center, sought help from three different doctors for similar concerns—unexplained weight gain and acne—before a specialist finally gave her the necessary tests for PCOS. She first recognized symptoms of PCOS at 24, such as quick weight gain, hair loss, and unexpected acne on her chin. After that, she visited doctors, but her worries were often overlooked because she did not have the classic symptom of irregular periods. One doctor suggested her symptoms would likely improve once she “lost some weight.”

It wasn’t until a year after her initial consultation that Grassi saw Dr. Katherine Sharif, a women’s primary care specialist, who conducted hormone tests, took a comprehensive medical history, and accurately diagnosed her with PCOS.

According to Grassi, it’s quite frequent for healthcare providers to inform their patients that their PCOS will dissolve or improve with weight loss. Additionally, PCOS is a major contributor to infertility in women; however, some fertility clinics may refuse to perform egg retrievals unless patients fall under a specific BMI.

When doctors overlook patients’ concerns about PCOS symptoms, it can lead to serious health issues. Untreated PCOS can elevate a woman’s chances of developing high blood pressure, heart disease, gestational diabetes, and high cholesterol levels. Those with PCOS are also more vulnerable to type 2 diabetes, especially if they experience insulin resistance, which can lead to elevated blood sugar levels.

Grassi points out that weight bias and the challenge of maintaining a healthy weight have led to a significant occurrence of eating disorders among those with PCOS.

“There’s a lot of shame associated with PCOS, particularly for those in larger bodies, due to the visible symptoms, and feeling out of place in society,” Grassi mentions. “Many women take this to heart and struggle with self-acceptance.”

Individuals who face shame over their weight or are dismissed may hesitate to seek future medical assistance because of anxiety stemming from prior experiences with medical weight bias. This issue is increasingly prevalent in the U.S. where around 70% of the population is overweight or obese, leading many conditions to go unrecognized, thereby postponing necessary interventions and treatments.

‘Embracing Health at Any Size’

Grassi’s training is rooted in the “Health at Every Size” philosophy, which promotes the idea that health can be supported without a primary focus on weight loss.

Unfortunately, relatively few medical schools offer training that includes body diversity in clinical practice and challenges weight prejudice.

Recently, there have been some advancements, including the incorporation of weight bias in the PCOS diagnostic guideline report. “They specifically advised against using terms like ‘overweight’ or ‘obese’ since they are stigmatizing and emphasized the need to ask patients before weighing them,” Grassi explains.

Despite these improvements, there is still much work to be done to enhance PCOS care. Grassi suggests that patients inquire about the evidence that supports claims connecting weight loss to reduced PCOS symptoms.

“We lack long-term studies that investigate what occurs after five years on a diet or after someone discontinues one,” Grassi adds. “Most individuals tend to regain the weight they lost due to physiological responses to dietary restrictions. We still don’t know what this means for PCOS specifically.”

Grassi also urges patients to ask their healthcare providers challenging questions when addressing PCOS symptoms. She often suggests, “What would your advice be for a thin person having PCOS?”