There’s nothing to like about polycystic ovary syndrome (PCOS). This health condition, which affects about 1 in 10 women and girls, receives a lot of attention for its effects on reproductive health. However, PCOS also increases the risk of diabetes, heart disease, endometrial cancer and other health problems, making it a serious health issue from adolescence to the post-menopause years.
PCOS is characterized by overproduction of testosterone and other male hormones, which often causes numerous tiny cysts to surround the ovaries. The hormone imbalances of PCOS can produce a number of embarrassing symptoms and interfere with ovulation, making it a top cause of irregular menstrual periods and infertility. Many women with PCOS don’t even discover they have the condition until they try to become pregnant.
But there’s another common PCOS symptom that makes things even more complicated — weight gain, especially around the waist. PCOS can produce a perfect storm of carb cravings, higher levels of insulin and the stress hormone cortisol, lower levels of appetite-suppressing hormones, increased inflammation and possibly a slower metabolism.
It’s a massive understatement that we live in a fat-phobic, thin-focused society. So even though PCOS itself can cause weight gain, women with PCOS are often “prescribed” weight loss by their doctors — as if they haven’t already tried that. Many women with PCOS have a history of yo-yo dieting from trying to fight their bodies, which can worsen health and, ironically, increase weight over time. To explore this disconnect, I talked to registered dietitian nutritionist Angela Grassi, owner of the PCOS Nutrition Center in Bryn Mawr, Pennsylvania (PCOSnutrition.com), and author of “The PCOS Workbook” and “The PCOS Nutrition Center Cookbook.”
“Just like most conditions, weight loss is the first-line treatment recommendations for larger bodied people. They are blamed for their weight,” Grassi said. She points to the widespread weight bias in the medical community and the fact that weight itself has been medicalized. “What’s the first thing that happens when you go to the doctor? You’re weighed.” She said it doesn’t help that there’s a general lack of understanding in health care about PCOS and how to best treat it.
In any case, Grassi said weight loss is not a realistic solution for PCOS for several reasons. To start, there’s the simple but typically overlooked fact that sustainable weight loss is rare — about 95% of people who intentionally lose weight regain the weight within five years. But even if women with PCOS could lose weight and keep it off in the long term, it’s unclear that it would actually help.
“We have no long-term data that shows what happens to people with PCOS after they have lost weight,” she said, adding that two particular unknowns are what happens to reproductive and metabolic health when someone with PCOS regains their lost weight. “Most people with PCOS have dieted and want to lose weight. They struggle with losing weight. They need and deserve a sustainable approach to help them that doesn’t focus on weight loss.”
So instead of being told to lose weight, what should women with PCOS be offered by their health care providers?
“Treatment for PCOS should involve personalized, sustainable lifestyle changes that benefit both emotional and physical health,” Grassi said. “This includes gentle nutrition, enjoyable exercise, self-care, mindfulness, sleep hygiene, stress management, along with medications and supplements. You can improve PCOS without weight loss.”
She said that while diet and lifestyle are the primary treatments for reducing the symptoms and complications of PCOS, there’s no “PCOS diet” — despite what some people claim — and that conflicting nutrition advice creates confusion. “Even some dietitians promote gluten-free, dairy-free diets when there is no evidence that supports one nutrition approach being best for PCOS.”
While it’s frustrating that weight loss is so frequently recommended by health care providers, given its dismal track record, those recommendations become potentially dangerous when the patient has an eating disorder or is at increased risk of developing one. And people with PCOS are at increased risk of eating disorders. They’re also more prone to depression and other mood disorders, which themselves can contribute to the development of an eating disorder. The risk is elevated enough that international, evidence-based guidelines for PCOS recommend that health care providers screen all women with PCOS for eating and mood disorders.
Certainly, the pressure to lose weight — and the struggle to comply — can take a toll on self esteem and body image and contribute to eating disorders, but so can uncontrollable and embarrassing “visual” symptoms of PCOS caused by elevated “male” hormones, such as acne, thinning of hair on the head and excess hair growth on the face, chest and back. “There is a lot of shame among the PCOS population. Many with PCOS may feel more masculine because they have excess testosterone,” Grassi said. “Plus, elevated insulin levels may contribute to binge eating behavior because of appetite stimulation and low blood sugar episodes.”
Given that many people who should be screened for eating disorders in their doctors’ offices are not — often because they don’t fit the visual stereotype of being a young, white, startlingly thin female — I asked Grassi if she thought screening recommendations were being followed for PCOS patients. She doesn’t — and the barriers may come from both the providers and the patients.
“Most health care providers don’t even know what PCOS is,” she said. “Many people who have PCOS and engage in disordered eating or eating disorders may not be aware that their symptoms meet diagnostic criteria, or they may be too embarrassed or ashamed to discuss their symptoms.”