As a teenager, Pamela Everland dealt with irregular and excessively heavy periods lasting six to eight weeks. At 19, a gynecologist prescribed birth control to manage her cycles, but new issues arose; Everland faced rapid weight gain in her 20s despite trying various diets such as Weight Watchers and Atkins, along with acne that persisted into her 30s.

Yet, during each visit to her doctor, she was simply advised to lose weight.

“I expressed to my primary care physician that I dislike coming to the office because it feels so weight-oriented,” she shares.

This discouragement led her to stop visiting doctors and suffer in silence.

Determined to find answers, Everland began her own research and recognized that her symptoms matched those of polycystic ovarian syndrome (PCOS), a hormonal disorder where the ovaries and/or adrenal glands produce excessive male hormones, known as androgens.

She urged her primary physician to run hormone tests, which necessitated stopping birth control for three months to get accurate results.

During this three-month period, all the hormonal issues suppressed by the birth control reappeared. Everland battled acne all over her body, experienced hair loss, and noticed excessive hair growth on her chin. “I was growing a goatee because I couldn’t keep up with plucking,” she recalls.

Her blood tests indicated high testosterone levels, inflammation, insulin resistance, and hormonal imbalances—all signs of PCOS.

At last, Everland was diagnosed with PCOS at 38, nearly thirty years after her first menstrual period.

Understanding Polycystic Ovarian Syndrome (PCOS)

PCOS affects 8% to 18% of women of reproductive age. Typically, women see three or more healthcare providers before getting an accurate diagnosis. The World Health Organization suggests that as many as 70% of women with PCOS are still undiagnosed worldwide.

Weight and gender biases significantly contribute to this diagnostic delay. Women with PCOS frequently face weight-focused healthcare, warns Angela Grassi, a registered dietitian and the founder of the PCOS Nutrition Center. In some instances, doctors may insist that patients lose weight before proposing other effective treatment alternatives, disregarding the reality that the hormonal issues related to PCOS can make weight loss quite challenging.

Confronting Medical Weight Bias and Seeking Diagnosis

Now 48, Everland emphasizes how medical weight bias has influenced her life, leading her to postpone visits to primary care physicians and specialists.

In 2020, during the COVID-19 lockdowns, she found herself alone in a hospital bed for emergency hernia surgery. Yet, rather than tackling her immediate health problem, the surgeon entered her room and suggested that she should consider bariatric surgery, warning her that her obesity could be fatal.

“I told him that he didn’t understand my situation; I have PCOS,” Everland asserts. “He accused me of using that as an excuse for being overweight. I was there for a hernia issue, and he didn’t even acknowledge my real concern.”

Everland isn’t alone in this experience.

Grassi, who oversees the PCOS Nutrition Center, visited three different doctors complaining of similar symptoms—unexplained weight gain and acne—while suspecting she had PCOS. Despite showing symptoms, she faced skepticism until a specialist finally conducted the appropriate tests for the condition.

Her PCOS symptoms began at 24, marked by sudden weight gain, hair loss, and acne clusters on her chin. After scheduling her first doctor’s appointment, her concerns were largely dismissed due to the absence of the classic symptom of irregular or missed periods. Another physician suggested that her issues would likely improve once she “lost the extra weight.”

At last, a year after her first visit, Grassi consulted Dr. Katherine Sharif, a women’s primary care specialist, who performed the necessary hormone tests for PCOS, took an extensive medical history, and issued a proper diagnosis.

According to Grassi, it is very common for healthcare providers to tell patients that their Polycystic Ovary Syndrome (PCOS) will “go away” or improve with weight loss. PCOS is a significant contributor to infertility in women, yet some fertility clinics require patients to have a BMI below a certain threshold before performing egg retrievals.

Ignoring patients’ worries regarding their PCOS issues can lead to serious health problems. Untreated PCOS can increase a woman’s chances of high blood pressure, heart disease, gestational diabetes, and high cholesterol. Additionally, women with PCOS may face a heightened risk for type 2 diabetes, especially if they have insulin resistance, which can cause elevated blood sugar levels.

Grassi points out that weight stigma, along with challenges in maintaining a stable weight, has led to a significant incidence of eating disorders among those with PCOS.

“There’s a lot of shame surrounding PCOS, particularly for those in larger bodies, due to visible symptoms that are hard to conceal, making societal acceptance difficult,” explains Grassi. “Many women internalize these feelings and struggle with self-acceptance.”

Patients who experience weight shaming or feel ignored may delay or skip future medical appointments due to the anxiety stemming from earlier encounters with weight bias. This issue is increasingly prevalent in the U.S., where roughly 70% of individuals are considered overweight or obese, leading to many conditions going undiagnosed and delaying necessary treatment.

‘Health at Every Size’

Grassi has been educated in the “Health at Every Size” approach, which focuses on promoting health without prioritizing weight loss.

Unfortunately, only a handful of medical institutions provide training that incorporates body diversity and addresses weight bias within healthcare.

Recent improvements have been made, such as the inclusion of weight bias in the PCOS diagnostic guidelines. “They advised against using terms like ‘overweight’ or ‘obese’, calling them stigmatizing, and they recommended asking for permission before weighing patients,” Grassi shares.

However, there is still much work to be done to enhance the standard of care for PCOS. Grassi urges patients to query their healthcare providers about the evidence that supports the belief that weight loss mitigates PCOS symptoms.

“We lack long-term studies on the effects of dieting over five years or what happens when someone stops a diet,” Grassi points out. “Most individuals regain any lost weight due to natural physiological reactions to restriction. So, how does this impact PCOS? That question remains unanswered.”

Grassi encourages patients to confront their doctors with challenging questions during consultations about PCOS. Some of the most thought-provoking questions she suggests are: “What advice would you give to a thin patient with PCOS?”