Known as polycystic ovary syndrome or polycystic ovarian syndrome, PCOS is the most common endocrine disorder in females of reproductive age. Once thought of as a gynecological condition, emerging research and guidelines present PCOS as a multisystem disorder requiring a multidisciplinary approach to treatment. While PCOS affects between 3% and 21% of all women and adolescents around the world, one report estimates that 50% to 75% of those with PCOS do not know they have it.
“Many of my clients come to me already diagnosed with PCOS but share a similar story of years with symptoms managed by birth control or completely dismissed,” says Olivia Wagner, MS, RDN, LDN, IFNCP, owner of Chicago-based Liv Nourished, which offers functional women’s nutrition for PCOS and irregular or missing periods.
PCOS symptoms can present differently. Many people with PCOS experience irregular menstrual cycles, ovarian cysts or increased follicle count on the ovaries (diagnosed via ultrasound) and hirsutism (increased body and facial hair growth more characteristic in males). Up to 80% of those with PCOS experience excess androgen levels, which lead to hirsutism, acne and changes in hair growth patterns. Half of those with PCOS experience overweight or obesity.
Women with PCOS are at an increased risk of infertility (15 times more likely), Type 2 diabetes (4 times more likely) and insulin resistance, cardiovascular disease, certain types of cancer, eating disorders and mental health conditions including depression and anxiety. An estimated 50% of people with PCOS will develop metabolic syndrome.
Several organizations have published recommendations for PCOS over the years, including in 1990, when the first international conference was held at the National Institutes of Health. Here, initial diagnostic criteria for PCOS were developed and used until 2003, when a group of experts created the Rotterdam criteria. According to these criteria, two of three clinical findings must be present for a physician to diagnose PCOS: ovulatory dysfunction, polycystic ovaries and an excess of androgen hormones. In 2018, as a result of a collaboration among 37 international organizations in 71 countries, an International Evidence-Based Guideline for the Assessment and Management of PCOS was released. It presents 166 recommendations and practice points for clinicians and dedicates a chapter to lifestyle interventions for women with PCOS. It is unknown how many U.S. physicians have adopted this guideline.
Some RDNs believe the traditional criteria used by physicians to diagnose PCOS can have limitations. Melissa Groves Azzaro, RDN, LD, owner of The Hormone Dietitian LLC and author of A Balanced Approach to PCOS explains, “Rotterdam is definitely flawed — ovaries can appear polycystic for several reasons, including puberty, hypothalamic amenorrhea and after going off hormonal birth control.”
Wagner supports the new international guidelines, which she says support aspects of the Rotterdam criteria “but also recommend tighter diagnostic criteria requiring both hyperandrogenism and irregular cycles. The newer guidelines are more specific regarding how ultrasounds are used and interpreted.”
Because of the potential reductions in quality of life and comorbidities such as CVD, Type 2 diabetes and reproductive problems, the scientific community has focused on PCOS diagnosis and treatment in adolescents. Some pediatric guidelines indicate PCOS diagnosis in adolescents cannot be made until two years post-menarche, while others, including the new international guideline, suggest adolescents should be assessed as at-risk if they experience menstrual irregularity after just one year. In 2019, a group under the International Consortium of Pediatric Endocrinology created an update of recommendations specifically for adolescents.
New research funded by the NIH suggests there may be distinct subtypes of PCOS, which could provide insight into diagnosis and treatment in the future. The study included an analysis of hormonal and anthropometric data and the genes of close to 900 individuals diagnosed with PCOS based on NIH and Rotterdam criteria. These preliminary findings were based solely on cases in the U.S. and individuals of European ancestry.
Studies surveying people with PCOS show weight management and difficulty losing weight are their foremost concerns. The primary intervention for PCOS has been advice to lose weight to lessen the effects of insulin resistance that often accompanies the condition. Even modest weight loss (5% to 10% of initial body weight) can reduce PCOS symptoms, decrease androgen production, increase fertility and improve both insulin sensitivity and ovulatory function.
Amy Plano, RD, CDE, MS, CDN, owner of The PCOS Dietitian and author of Treating PCOS with the DASH Diet: Empower the Warrior from Within, describes her approach to weight loss: “There is so much research backing the benefits of even modest changes in weight for this population from a symptom standpoint. So, weight loss — when warranted — is a no-brainer. Looking at the big picture is most important. I help women lose weight so they can qualify for in vitro fertilization and accomplish their dream of having a family.”
Wagner takes an approach that de-emphasizes weight loss as a focus but finds many of the changes she works with clients on ultimately lead to a reduction in weight, if appropriate and a goal of the client. “In my practice, I prioritize features like blood sugar balance, anti-inflammatory diet modifications and addressing other imbalances that could be adding to inflammation and overall expression of PCOS,” she says. “As a result of these shifts, weight loss is typical. We know that fat loss improves insulin resistance and estrogen metabolism, and improved insulin resistance also improves testosterone levels. Weight loss and fat loss can be supportive, but for me, it is a secondary goal in overall treatment.”
However, people with PCOS may have trouble losing weight because of metabolic changes associated with the condition. Also, studies show people with PCOS experience food cravings, increased appetite, impaired impulse control and body dissatisfaction. This may worsen the likelihood of disordered eating and mental health problems. “PCOS is a lifelong condition, so any changes we recommend have to be sustainable,” Azzaro says. “It is also important to remember that the incidence for disordered eating is exponentially higher in people with PCOS and restrictive diets are not the answer.”
Studies have shown that people with PCOS have higher rates of and higher odds of moderate and severe depression and anxiety. Research on the incidence of eating disorders in the PCOS population has found an increased prevalence of binge eating behavior. Women with bulimia nervosa and binge eating disorder are more likely to have PCOS symptoms and polycystic ovaries; more research is needed to better understand a possible association between eating disorders and PCOS.
A cross-sectional study in Australia found that disordered eating — but not eating disorders — was more prevalent in women with PCOS compared to the control group. Researchers concluded that health care professionals should screen all women with PCOS for disordered eating patterns.
The new international guideline states that all health care professionals should be aware of the increased prevalence of eating disorders and disordered eating that may be associated with PCOS. The guideline also says people with PCOS can experience benefits in body composition and metabolic status separate from weight loss. Azzaro agrees and says, “I question whether it was the weight loss itself or the behaviors that led to the weight loss that actually impacted symptoms and markers. I think a lot of doctors don’t acknowledge how damaging it is to tell women with PCOS to ‘just lose weight,’ given the context of hormonal imbalances that make weight loss more difficult, such as insulin resistance, high androgens, high cortisol and DHEA, and inflammation.
Most clinical guidelines suggest lifestyle modifications can serve as the first line of treatment for PCOS. Pharmacological treatment also is available and often includes combined oral contraceptive pills or anti-androgen medications for those with irregular menstrual cycles and high androgen levels, metformin for blood sugar management and insulin resistance, and ovulation induction medications for those with infertility related to PCOS.
Limited studies suggest dietary modifications, physical activity and behavioral therapy delivered by a multidisciplinary team that includes a registered dietitian nutritionist and health psychologist may yield better success with weight loss, patient satisfaction and continuing to seek care with their provider for PCOS management. However, a survey-based study of 722 women with PCOS found less than 10% of participants reported working with an RDN.
Plano agrees with taking a multidisciplinary approach and does so in her practice. “PCOS is multifactorial and impacts so many different systems in the body. It is not just a hormone issue,” she says. “Having a strong referral team in place is absolutely critical. I work closely with therapists, marriage and family counselors, endocrinologists, dermatologists and OB/GYNs.” Azzaro says a multidisciplinary approach is “absolutely integral. It takes a village. In fact, one of the things I like most about the [international guideline] is that it highlights the need for people with PCOS to have a full support team, including primary care, gynecology, endocrinology, diabetes care, dietitians, mental health professionals, personal trainers, estheticians and more.”
Plano explains her approach to personalizing the diet for clients with PCOS: “First I look at improvements in quality, then I work on decreasing the caloric intake, if necessary. I don’t cut out any food groups but instead do my best to help them gradually scale back the quantity of carbohydrates they consume. I like to aim for 40% or fewer total calories coming from carbohydrates. I elevate the protein to promote satiety and encourage heart-healthy fats.
The international guideline offers dietary intervention recommendations for women with PCOS, which include a focus on balanced dietary approaches tailored for food preference, flexibility and individual needs. While the dietary interventions list an energy deficit of 30% (or 500 to 750 calories per day) as a consideration for those with excess weight, they also state that all women, regardless of age, should follow general healthful eating principles. The guideline also says weight-related stigma, self-esteem and body image need to be taken into consideration. All health care professionals should be respectful and considerate when approaching discussions about weight, seek permission before taking weight measurements and focus on the emotional well-being of patients and clients.
An important strategy for treating people with PCOS is creating a dietary plan to help reduce insulin resistance. Published in 2013, a systematic review of five studies found that, although several diets (monounsaturated fat-enriched, low-glycemic index, low-carbohydrate, high protein) yielded various health benefits, it was ultimately weight loss that seemed to improve PCOS symptoms the most, regardless of the diet’s composition. These researchers pointed to reducing total caloric intake rather than adjusting individual aspects within a dietary pattern.
A more recent systematic review of 19 clinical trials showed that diet can significantly improve insulin resistance and body composition for people with PCOS. Specifically, the Dietary Approaches to Stop Hypertension diet and eating patterns that created a 500-calorie deficit performed best. Researchers found that a longer duration of these dietary interventions yielded more improvements in insulin resistance and body composition.
Macronutrient modification including low-glycemic or low-carbohydrate diets have limited evidence for effectiveness in treating PCOS. One small study from 2005 examining the use of a ketogenic diet for six months saw significant improvements in weight, hormonal profiles and fertility. Other studies, including a systematic review, have shown that reductions in carbohydrate consumption (from 55% to 41% of total energy intake, in some studies) improved the metabolic effects of PCOS. All these studies are small and have limitations, so more research is needed to understand whether carbohydrate restriction or reduction could be beneficial for people with PCOS.
Surveys about health-related knowledge, beliefs and self-efficacy of women with PCOS, compared to a control group, found those with PCOS perceived fewer benefits from healthy lifestyle behaviors such as diet and exercise in relation to weight gain, and only 47% of the PCOS group reported attempting to follow an overall balanced diet. “When it comes to dietary support for PCOS, my approach is a whole-food diet focused around blood sugar stability, high plant-based fiber and inclusion of macronutrient-balanced and anti-inflammatory meals while addressing any individual root imbalances with food as medicine,” Wagner says.
Exercise guidelines for women with PCOS are similar to those without. Adolescents should aim for 60 minutes or more of physical activity per day with strength training three times per week, and adults should get 150 minutes per week of moderate-intensity activity or 75 minutes of vigorous activity (or a combination of both) and two non-consecutive days of strength training activities. The international guideline for PCOS suggests activity be performed in 10-minute or longer bouts and that patients and clients take 10,000 steps per day. Recommendations for those aiming for modest weight loss or focusing on weight regain prevention are 250 minutes per week of moderate-intensity activity or 150 minutes of vigorous activity (or a combination of both) and two non-consecutive days of strengthening activities.
In a systematic review and meta-analysis about exercise for managing PCOS, effects from exercise included statistically significant benefits to fasting insulin, insulin resistance markers, total and low-density lipoprotein cholesterol and triglycerides. The greatest improvements were seen in study participants with overweight or obesity. However, the authors cautioned about interpreting the findings due to study limitations including low-quality evidence.
One systematic review and meta-analysis found that when assessing exercise duration (ranging from six to 26 weeks), exercise intensity mattered more than quantity for health outcomes, including increases in V02 peak (used to assess a person’s physical activity limits, this is the highest value of oxygen rate attained during a high-intensity exercise test), reduced insulin resistance markers and reduced waist circumference. The greatest benefit was seen in vigorous-intensity exercise either alone or combined with a dietary plan, advice or guidance.
Behavioral therapy interventions
A review of evidence included in the new international guideline for PCOS indicated behavioral interventions yielded better outcomes in weight management for adolescents than compared to a placebo group, as well as when used in combination with dietary and exercise interventions. One study showed that adolescents who received behavioral interventions from a multidisciplinary care team with an RDN, health psychologist, gynecologist and endocrinologist experienced enhanced weight loss when combined with dietary consultations.
Role of RDNs
There are proven benefits to people with PCOS receiving early access to an RDN. While studies show a multidisciplinary approach to PCOS treatment yields the best outcomes, they also highlight barriers to including RDNs in the care team, including insurance reimbursement and financial limitations for patients and clients, lack of referrals for nutrition education and lack of knowledge of PCOS and the potential benefit of lifestyle interventions. Studies show knowledge gaps in health care professionals can lead to delays in diagnosing and caring for people with PCOS and to patients and clients seeking less qualified or low-quality information online for support. RDNs working with populations at risk for PCOS should stay abreast of current research.
When approaching weight management for people with PCOS, RDNs should consider emotional well-being, individual dietary and lifestyle preferences, and unique, cultural and socioeconomic values or needs. Using a patient-centered approach that is weight-inclusive is important when working with people with PCOS. Plano supports this approach and adds, “No matter what the dietary protocol, the individual and their food preferences and lifestyle are paramount. Working around my guidelines is second to the client’s personal needs.”
Wagner also supports personalized care and holistic support. “I find that establishing an empowered mindset toward their health is essential for best outcomes,” she says. “With a focus on inclusion versus exclusion and empowering them in their diet and lifestyle, it is easier to adopt daily practices that they truly feel aligned with that are going to support their health with PCOS long-term.”
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