Women’s Health Just Teamed Up With Equip to Research How Weight Bias Impacts PMOS Patients. The Data Is Concerning.

8 min readFor the longest time, when it came to polycystic ovary syndrome (PCOS), the focus was on fertility. Care was siloed into ob-gyn offices and mostly revolved around supporting patients who wanted to get pregnant, while other symptoms like fatigue and unwanted acne and facial hair moved to the back burner.But the condition affects a lot more than the ovaries—so much so that it recently got a new name, polyendocrine metabolic ovarian syndrome (PMOS). This new nomenclature is a huge deal; it reclassifies the syndrome as a metabolic one, breaking it out from the world of gynecology and expanding routes for research.As PMOS gets an upgrade, though, there’s another longstanding association that’s keeping the 170 million people worldwide from getting the best care they can: “Weight and PMOS are intertwined,” says Laura Cooney, MD, a reproductive endocrinologist at UW Health who specializes in PMOS. In fact, weight is one of the first things that gets brought up for people who suspect they have the condition—and then again after they’re diagnosed.Unpacking the weight factor in the PMOS discussion is one of the main reasons that Women’s Health teamed up with Equip, a leading online eating disorder treatment platform, to conduct a clinical survey of over 1,000 people either with PMOS or who suspect they may have it (since formal diagnosis can take more than five years, as it did with 21 percent of diagnosed respondents). Here’s what the data uncovered about PMOS, weight, and mental health.Why Are PMOS and Weight So Connected?For people with PMOS, conversations about body size can become commonplace fast since the syndrome can lead to weight gain. About 90 percent of the Equip x Women’s Health survey respondents with PMOS said that weight loss was recommended at some point in their treatment—and over one-third said it was the primary recommended approach. For those who suspect they have it, that number jumps to 48 percent.“Instead of treating the weight gain as a symptom, doctors instead treat it as the problem, with the solution being that the patient needs to change,” says Erin Parks, PhD, a psychologist, researcher, and the chief clinical officer and cofounder of Equip. The result? Delays to care, mental health challenges, and strained relationships with doctors—all for a group struggling with an under-researched syndrome that still doesn’t have its own treatment.When Olivia Franks, 23, was diagnosed with PMOS three years ago, her endocrinologist had a clear recommendation for her: “He basically said to me, ‘Start eating a thousand calories a day, do an hour of aerobic exercise a day, and we don’t need to put you on any medications until you want to get pregnant.’”Solely given lifestyle recommendations by her doctor, Franks’ care was essentially being put in her own hands. In order to feel better, she’d have to lose weight—something that’s incredibly hard with or without a condition that causes you to gain it. “One in 1,500 people will lose weight from above a BMI of 30 to a normal weight range and keep it off through lifestyle alone,” says Helena Teede, PhD, the director of Monash Center for Health and Research Implementation and the woman who led the team that reclassified PMOS. “What treatment would anyone in their right mind advise that had a one in 1,500 success rate?”There is a legitimate reason docs bring the number on the scale up, Teede says. (Though it should also be mentioned that weight bias is a pervasive problem in medicine and drives the conversations too.) Research has found that weight can exacerbate PMOS symptoms, and in some cases, gaining it can even be what brings them out in the first place, she says. Conversely, losing weight can help reduce symptoms. That said: “Weight is not the fault of the individual,” per Teede, but it’s clear that’s getting lost in conversations between patients and doctors.Teede says lifestyle changes can account for about only 5 percent of changes in a person’s size, but the rest is affected by much bigger factors outside of their control from their environment to their food supply. It’s the kind of stuff that the government needs to change, not an individual person. Still, that’s not being made clear to people who are being prescribed weight loss for their PMOS.Franks followed her doctor’s instructions—only to gain more pounds. She said she felt hopeless, confused, and ashamed. “I felt like I was basically being told I wasn’t working hard enough and I didn’t have enough self-control,” she remembers. She’s not alone. Over 60 percent of Equip x Women’s Health respondents said they felt shame or embarrassment about their eating habits in relation to their PMOS, too. It’s a major problem—and just the tip of the iceberg when it comes to the unique mental health challenges people with PMOS face, per the data.The Hidden Mental Health Toll of PMOSIncreasingly, research is showing that people with PMOS experience anxiety, depression, and eating disorders at higher rates than the general population. Thirty-seven percent of Equip x Women’s Health survey respondents met the screening criteria for depression and 48 percent met the criteria for anxiety. (Comparatively, in the United States, 8.3 percent of adults have depression while 19.1 percent have anxiety.)As for why these mental health concerns are more common in people with PMOS? “There are so many different factors,” Dr. Cooney says. “There can be the hormonal component to depression and anxiety, and then there’s also the body image component.”Doctors think there’s a biological component to mental health challenges in people with PMOS—on top of the situational ones, from not getting timely or effective care to grappling with a body that feels out of control. (Nearly half of people with PMOS surveyed in the Equip x Women’s Health research said they felt they couldn’t manage their symptoms, for example.) At the same time, more than 60 percent of respondents said that their providers rarely or never discussed the emotional and psychological impacts of the condition with them.One important area of mental health in particular has to do with disordered eating and eating disorders. A staggering 55.6 percent of Equip x Women’s Health survey respondents met the screening criteria for an eating disorder, with 12.9 percent having a formal diagnosis. (Up from 9 percent of the U.S. population.)This isn’t a surprise to Parks. “We really are, in some ways, prescribing eating disorder symptoms,” she says. PMOS patients, like Franks, are told to follow highly restrictive, low-calorie diets that, in other contexts, would raise flags as a symptom of an eating disorder. Online, people will talk about foods to avoid entirely when you have PMOS, leading to further restriction and the moralization of different foods as good or bad—also eating disorder behaviors, Parks explains.These kinds of eating patterns are prominent among PMOS patients. Per the Equip x Women’s Health research, 39.6 percent of those diagnosed with PMOS said they follow a “highly restrictive” diet due to their own research and online communities, while 19.1 percent said that diet was recommended by providers. And, about 25 percent of them said they had either a mostly negative or very negative relationship with food.It’s not that everyone who does those things automatically has an eating disorder, Parks says, but those behaviors can turn into one, especially as they take up more and more prominence in someone’s life.For example, if someone with PMOS has internalized that they should avoid baked goods, as one TikTok suggests, and decides to skip a friend’s birthday to avoid the birthday cake, that is entering more dangerous territory. Or, if someone with PMOS is trying to nail their nutrition and spends all of their time meal-planning and agonizing over macros, they may be giving a disproportionate amount of mental real estate to food and what they’re eating.When it comes to restrictive, low calorie diets that are recommended to people with PMOS, binge eating disorder is a risk in particular, Parks explains. Per the Equip x Women’s Health survey, it was the most common eating disorder among people with PMOS. “Periods of restriction—like eating a thousand calories—that inherently drives binges,” she says. When you’re not eating enough, your body notices, and then comes back even hungrier.Basically, the way that doctors are talking to their patients with PMOS about weight isn’t helping their mental health or relationships to their bodies. Almost 90 percent of the Equip x Women’s Health respondents had a low to moderate body appreciation score. “All we are doing is just making people’s anxiety, disordered eating, and depression worse because the treatments that we want to offer them are not that accessible and the public health measures we really need to help them are just not there,” Teede says.Understanding the Doctor-Patient RelationshipWhen it comes to the mental health toll of PMOS, “a diagnosis helps,” Teede says. “If people have a diagnosis, they’re more likely to feel like they can be proactive.” But weight bias in medicine can also prolong getting to that point. About 43 percent of Equip x Women’s Health survey respondents with PMOS reported that providers attributed their symptoms to weight, which directly delayed their diagnosis.And, an overemphasis on weight can lead to dysfunctional patient-doctor relationships. “If it takes someone three years to get diagnosed and they feel like people are focusing on weight and not focusing on their other issues or they feel like they’re just putting a Band-Aid over their symptoms, they can lose trust in the health care system completely,” says Dr. Cooney. That comes with real risks; in the time that people aren’t getting monitored and treated for their PMOS, their increased risk for diabetes and endometrial cancer are also not getting the attention they need.Forty-nine percent of people with PMOS reported feeling judgment from their providers—and that also leads to delaying or avoiding care. In total, 40 percent of Equip x Women’s Health survey respondents said they put off necessary medical care due to negative prior experiences. “I’ve seen that in patients who come in where they've had such bad experiences with other providers that then it's taken them a while to be comfortable to come to see us,” Dr. Cooney says.Even with a new care team, Franks still struggles with doctors. “I absolutely dread my doctor’s appointments,” she says. “I usually go into them with hours, if not days, of preparation of trying not to hate my body and trying not to think about how this is not proof of me being ugly or fat or undisciplined.”In Dr. Cooney’s practice, she gets permission before talking with a patient about weight and says it’s important for providers to keep in mind that it’s not everyone’s focus. It’s possible to address the metabolic and cardiovascular risks associated with PMOS without zeroing in on weight. Mental health, self-perception, and happiness are all equally critical components of a patient’s health and care, Dr. Cooney says, so providers should consider all of those things in their treatment plans, especially if someone has a history of eating disorders.Overall, losing weight can sometimes help symptoms, but it’s not the only thing that matters. A healthy lifestyle—regardless of the number on the scale and how it changes—is important, Teede says.Neither physician in this article has strict rules (like the ones you’ll find online) and instead say patients should really focus on a balanced diet that limits processed foods and doing movement you enjoy. There’s no silver bullet supplement or special diet. (“Anyone who’s trying to sell you something that makes it all go away is not following the evidence,” Teede says. For evidence-based information on PMOS, she says you can utilize the AskPMOS app, which her team created.)In many ways, after the name change, we’re at a new starting line when it comes to PMOS. In real time, doctors are learning more about how the syndrome actually works and how to treat it. But as the new research from Equip and Women’s Health unequivocally shows: it’s time they put a lot more thought into how they talk about it too.