PCOS NUTRITION CENTER BLOG

Did you hear? The newly released International Evidence-based Guidelines for the Assessment and Management of Polycystic Ovary Syndrome (PCOS) were released this week. You can view them here.

Designed to provide clear information to assist clinical decision making and support optimal patient care, these guidelines encompass the culmination of the work of over 1,000 health professionals and consumers internationally. The PCOS Guidelines were formed based on the review of the best evidence available at the time of preparation.

As a registered dietitian and PCOS expert, I was fortunate to be asked to review and provide feedback on the later draft of the PCOS guidelines, before they were published.

The guidelines (all 270 pages of them!) provide recommendations based on the level of evidence available for the different aspects relating to PCOS. These categories include diagnosis, medications and treatments, infertility treatments,  lifestyle recommendations, and medical complications of the different lifecycle stages of PCOS. The original PCOS guidelines were published in 2011 and have been updated every few years since (in 2015, 2018).

These guidelines reflect the newest advancements in PCOS research and offer more insight into better managing and treating PCOS. I appreciate the tremendous efforts of everyone involved in putting these guidelines together. They are a very thorough presentation of the results and evidence of PCOS research. Below you can find the PCOS guideline highlights.

International PCOS Guideline Highlights:

• The name of the condition is a distraction and should be changed
• AMH should now be included in the diagnosis criteria as an alternative to ultrasound in adults
• Ultrasound or AMH is not recommended for adolescents
• PCOS could be considered as enduring/lifelong
• Healthcare providers should check for depression and anxiety, and other mental health challenges that are more common in PCOS
• Providers should work together with those with PCOS to make decisions about their care, and that they should be careful to consider cultural factors and ethnicity and not discriminate, especially based on weight
• Recommend patients be asked permission to be weighed
• A healthy lifestyle is very important, but that no one specific diet or exercise plan or intensity is better than any other
• Recommend effective medicines and treatments that can be helpful that those with PCOS including the combined contraceptive pill, medications to balance the hormones and to reduce symptoms
• Women with PCOS should be considered at increased risk of cardiovascular Disease and monitored
• PCOS have significantly higher prevalence of obstructive sleep apnea compared to women without PCOS, independent of BMI
• PCOS should be considered a high-risk condition in pregnancy.
• An increased premenopausal risk of endometrial cancer should be recognized.
• Letrozole is first-line pharmacological infertility therapy recommended to patients with PCOS

What the New PCOS Guidelines Got Right

There are many recommendations I was happy to see included in these new PCOS guidelines, yet some that I feel were overlooked or not considered enough.In addition to the highlights, here’s my take on what the new guidelines got right and wrong,

Acknowledgement of Inositols for PCOS Treatment

Finally, inositols, like Ovasitol, are getting the attention they deserve! The PCOS Guidelines state that “Inositol (in any form) could be considered in women with PCOS based on individual preferences and values, noting limited harm, potential for improvement in metabolic measurements.The guidelines do stress, however, that “specific types, doses or combinations of inositol cannot currently be recommended in adults and adolescents with PCOS, due to a lack of quality evidence.”

Screening for Eating disorders

The revised PCOS guidelines encourage health professionals to recognize that features of PCOS can have a significant impact on body image.

There is an increased prevalence of eating disorders and disordered eating associated with PCOS. As such, people with PCOS should be screened for eating disorders and distorted eating and referred to eating disorder specialists. Eating disorders and disordered eating “should be considered in PCOS, regardless of weight, especially in the context of weight management and lifestyle interventions.”

Screening for Mood Disorders

The guidelines expanded their recommendations regarding mental health, body image, quality of life and weight stigma. The PCOS guidelines recommend health professionals and women should be aware of the adverse impact of PCOS on quality of life. Among PCOS, there is an increased prevalence of moderate to severe anxiety and depressive symptoms in adults and a likely increased prevalence in adolescents. The PCOS guidelines recommend routinely screening all adolescents and women with PCOS for anxiety and depressive symptoms at diagnosis and referred to qualified mental health professionals.

Also included this round, was the focus on reducing weight stigma. The PCOS guidelines acknowledge that weight stigma is pervasive in the PCOS community and that patients should be asked permission to be weighed.

I was very pleased to see the guidelines addressed weight stigmatizing language and have chosen to avoid the use of the terms o*erweight, o*ese or o*esity. Instead, the PCOS guidelines used more inclusive terms like higher weight (although there was still a big emphasis on BMI).

Also addressed was the need for gender-inclusive language, which the PCOS guidelines recommend as follows:

1. Increasing the use of gender-neutral terminology (e.g. adolescents, adults, individuals and those with PCOS), when gender is not central to the subject matter.

2. Using accessible language that is inclusive of persons with lower levels of health and/or PCOS literacy.

3. Increasing use of the term female, where biological sex is most relevant.

4. Retaining use of the term ‘woman/women’ which where used, intends to encompass all genders affected by PCOS irrespective of how they choose to identify

Warning about Metformin and B12

Metformin is one of the most common medications recommended to women with PCOS, even though it is still not indicated for its use. Metformin in addition to lifestyle, is often recommended in adult women with PCOS, for the treatment of weight, hormonal and metabolic outcomes.

I was pleased to see the authors of the PCOS guidelines address the fact that metformin use may be associated with low vitamin B12 levels, suggesting the need for doctors to screen people with PCOS who take metformin for a vitamin B12 deficiency. As a reminder, I recommend all women with PCOS who take metformin must supplement their diets with vitamin B12 and get levels checked annually.

Screening for Sleep Apnea

Obstructive sleep apnea (OSA) has been shown to be very common in people with PCOS and sleep loss in general has been shown to contribute to numerous health issues. Treatment for OSA has been shown to improve metabolic complications like insulin resistance and high blood pressure.  I was pleased to see the PCOS guidelines recommend screening for OSA  with the intention of improving cardiometabolic risk.

What the Guidelines Got Wrong

Recommending Birth Control as Primary Treatment

Oral contraceptives (OCPs) have long been used as a treatment for women with PCOS. Indeed, OCPs can reduce testosterone and regulate cycles, thus reducing the risk for endometrial cancer. However, OCP use is not without risk, especially for young women. These risks include increased triglycerides, inflammation, and increased risk for blood clots. There is also a link between OCPs and mood changes.

If women with PCOS have increased cardiovascular risk factors like high triglycerides, low HDL, and inflammation, why recommend OCPs, which have been shown to worsen these parameters, as a primary approach?

I was disappointed then to see that OCPs alone be recommended in adult and adolescent women with PCOS for management of hyperandrogenism and/or irregular menstrual cycles. There are other ways to regulate cycles and high testosterone levels without OCPs. Ovasitol for one, is a great supplement to try.

Lack of Support of Inositol for Fertility

I was disappointed to see that the guideline did not have enough evidence to support recommending inositols for fertility in PCOS. While the PCOS Guidelines do mention inositols as a potential therapy to help with metabolic issues, they could not recommend it yet for fertility. According to the guidelines, “Inositol in any form alone, or in combination with other therapies, should be considered experimental therapy in women with PCOS with infertility, with benefits and risks currently too uncertain to recommend the use of these agents as fertility therapies.”

Missed the Mark on Nutrition

Lifestyle interventions are recognized as a primary treatment to optimize hormones, general health, and quality of life.

The 2018 guidelines was heavily focused on caloric restriction for weight loss. I was pleased to see that part omitted in this publicationand instead, the guidelines state “there are benefits to a healthy lifestyle even in the absence of weight loss.” In fact the guidelines even state its important to avoid “unduly restrictive and nutritionally unbalanced diets.”

Definitely research is lacking in the area of nutrition for PCOS. There is not ONE eating plan that is better for people with PCOS than another. The guidelines state this and the evidence supports it. “Evidence doesn’t suggest a benefit of modifying the macronutrient composition of the diet based on insulin secretion.” I was pleased to see that there was an emphasis on sustainable eating tailored to individual preferences and goals.

But when it comes to nutrition recommendations, here’s where the guidelines really missed the mark. We do have evidence that antioxidant rich foods such as the ones used in DASH (Dietary approaches to stop hypertension) diets, work well for women with PCOS. Why not emphasize these foods? Or the evidence that shows low glycemic index, high-fiber foods can reduce insulin levels in PCOS, especially those with high insulin levels?

I was also surprised that their was no mention of vitamin D for PCOS in the guidelines which plays an important role in fertility.

This is why I emphasize the need for all patients with PCOS to work with a registered dietitian nutritionist who specializes in PCOS to get individual recommendations to meet their personal needs.

Weight Loss Medications Recommended

Lastly, and perhaps the one that bothers me the most, is the recommendation for anti-*besity medications .”Anti-*besity medications including liraglutide, semaglutide, both glucagon-like peptide-1(GLP-1) receptor agonists and orlistat, could be considered, in addition to active lifestyle intervention, for the management of higher weight in adults with PCOS as per general population guidelines.” These recommendations surprised me as there were only 3 orlistat studies reviewed, 5 exenatide studies reviewed, two involving liraglutide, one semaglutide, and one phentermine-topiramate. The long term use of these medications is still unknown. The guidelines did mention that weight gain after discontinuation can occur.

Again, I appreciate all the hard work that went in to revising the new International PCOS Guidelines. Thank you to all that worked so hard on it. There have been many advancements in PCOS research over the past 5 years and the guidelines added many important parts to benefit women with PCOS and those who treat them.

It is my hope that these guidelines help more women to get properly diagnosed in a timely matter and get the appropriate care they need and deserve. Overall evidence in PCOS is lacking and is poor quality. Significant research efforts (and funding) is needed for this common overlooked condition.

Source:International evidence-based guideline for the assessment and management of polycystic ovary syndrome. Released August 2023

Angela Grassi, MS, RDN, LDN is the founder of The PCOS Nutrition Center where she provides evidence-based nutrition information and coaching to women with PCOS. Angela is the author of several books on PCOS including PCOS: The Dietitian’s Guide, The PCOS Workbook: Your Guide to Complete Physical and Emotional Health, and The PCOS Nutrition Center Cookbook Recognized by Today’s Dietitian as one of the Top 10 Incredible Dietitian’s making a difference in 2014, Angela is the past recipient for The Outstanding Nutrition Entrepreneur Award, The Award in Excellence in Practice in Women’s Health and The Award for Excellence in Graduate Research, from the Academy of Nutrition and Dietetics. Having PCOS herself, Angela has been dedicated to advocacy, education, and research of the syndrome.