Polycystic ovary syndrome (PCOS) is a serious genetic, hormone, metabolic, and reproductive disorder. It affects 10-15% of women in the U.S and is the leading cause of infertility in women. PCOS can also lead to obesity, type 2 diabetes, cardiovascular disease, endometrial cancer, severe hair and skin issues, anxiety, and depression. We often get questions about nutrition and lifestyle strategies to help manage symptoms of PCOS. PCOS can also impact fertility. Many women are also seeking advice on conceiving and pregnancy with PCOS We went to some of the leading PCOS experts for their advice on overcoming PCOS symptoms.
We asked Registered Dietitians (RDs) specializing in PCOS, “What do you consider your clients’ biggest struggle with PCOS? What is your advice for overcoming this struggle?”
Two common themes were difficulty getting diagnosed with PCOS and receiving misinformation about managing symptoms.
Getting Diagnosed with PCOS
Angela Grassi, MS, RD, LDN, founder of the PCOS Nutrition Center states, “As a dietitian specializing in PCOS, the biggest struggle is that doctors don’t recognize PCOS enough and it goes overlooked for so long that symptoms get harder to treat. We need more funding from the National Institutes of Health (NIH) for clinical trials.”
Lisa Johnston, MS, RD/LD, CDE agrees. “Women with PCOS battle several health challenges but I see two of these challenges happening more often than necessary. First, just getting diagnosed with PCOS in a timely manner is difficult; sometimes it takes years. Secondly, some women are automatically told that they will never be able to have children. I’ve seen so many women go through years of struggling with irregular cycles, excess hair growth, and infertility before anyone even mentions that PCOS could be a possibility. Then once they are diagnosed, some physicians tell women that PCOS means you can never have children. We know that is not accurate.”
Tallene Hacatoryan MS, RD, CLT of Healthy Me OC and The Cysterhood adds, “By the time many women reach a Registered Dietitian, they’ve gone through so much at multiple doctors offices and seem to feel a bit hopeless.”
The Misinformation of PCOS on the Internet
Hillary Wright, MEd, RDN, LDN, author of The PCOS Diet Plan: A Natural Approach to Health for Women with Polycystic Ovary Syndrome, adds “Women with PCOS are exposed to a lot of nutrition misinformation on the internet, much of it coming from blogs that instill more fear than hope that things can improve. It’s important to pay attention to the source of the information you’re reading to make sure it’s coming from a credible source, like a health professional or scientific research-based platform.”
According to Martha McKittrick, RD, CDE, CHWC and PCOS Nutritionist, “Many women are overwhelmed by what they read on the internet. If you have PCOS, you need to go paleo, keto, no dairy, no carbs, no gluten, etc. None of this is truly evidence-based. My advice is that you need to find what works for you. For example, if you feel better avoiding dairy or gluten, then avoid it. Otherwise, you can fit it in within a balanced diet. Another example- while some women have an improvement in symptoms and lose weight on a very low carb diet, not all women with PCOS need to follow this type of plan. Listen to your body!”
The Misinformation of PCOS From Healthcare Providers
Judy Simon MS, RDN, CD, CHES, FAND of Mind Body Nutrition, PLLC states, “I hear from my patients repeatedly that they feel frustrated with health care professionals that have missed their diagnosis, been given poor advice such as just lose weight and the confusion of advice given on lifestyle recommendations. Many women have followed overly restrictive diets in an effort to lose weight, like keto, and have actually gained weight. I suggest women work with a team of health care professionals who understand and are passionate about treating women with PCOS. Surround yourself with a strong caring community and ask for what you need from your team. “
According to Rachelle Mallik, MA, RD, Founder of The Food Therapist, LLC, “One of the biggest challenges for my clients is a lack of education from their doctors about how to manage the condition and not being referred to a dietitian. The common recommendation to “lose weight” is not helpful for women with PCOS in larger bodies, and women in the “normal” BMI range may not receive any nutrition or lifestyle advice at all. My recommendation for overcoming this struggle is to ask your physician for a dietitian referral, and if they can’t provide one, then look for a Registered Dietitian (RD) who specializes in reproductive health. You can make health-promoting behavior changes for PCOS, and there are dietitians out there to support you!”
Julie Duffy Dillon RDN, CEDRD-S, PCOS Expert, and host of the Love Food Podcast adds, “Weight bias appears to be the biggest hurdle for my clients with PCOS. All too often, people with PCOS are told to lose weight to treat PCOS symptoms, improve insulin resistance, or promote fertility. Even worse, my clients are convinced by many health care providers that their weight caused their PCOS and its symptoms. There are zero long term weight loss diet studies showing evidence of health improvements for the majority of people with PCOS. There are no diets that have been shown to help the majority of people maintain weight loss and for most weight is regained.
I wish more health care providers moved away from this push for weight loss because diets don’t work.”
We also asked the experts for advice based on how they manage their own PCOS. “What has been your biggest struggle with PCOS? What have you found to be most effective for overcoming this struggle?”
Managing insulin resistance and blood sugar levels, dealing with infertility, making your health a priority, and using a non-restrictive, non-diet approach were the top responses.
Insulin Resistance and PCOS
Angela Grassi, MS, RD, LDN, states “Personally, I find that insulin resistance is the hardest to treat because insulin is so stubborn! To combat this, I make changes in my lifestyle, which include balanced eating, regular exercise, stress management techniques.”
Kelly Keating, Founder of PCOSLiving.com, adds, “The biggest struggle for the majority of women with PCOS is managing insulin resistance or stabilizing blood sugar levels. Approximately 70% of women with PCOS are insulin resistant. Insulin resistance is complicated and is often not addressed at all by the medical community, even though its effects play a major role in the symptoms that women with PCOS experience (difficulty losing weight, constant hunger, and fatigue). The two issues go hand in hand.
What I found to help me reverse my PCOS and balance my blood sugar levels was adopting a healthy diet, incorporating exercise, and taking supplements that help increase insulin sensitivity. It sounds overwhelming at first, but so is all the baggage that comes along with PCOS. I truly believe addressing insulin resistance is the key to taking back your body, and I wish more women with the condition were given the information and the tools needed to remove it from their lives.”
PCOS and Dealing with Infertility
Laura Gilstrap RD, LD/N of LG Nutrition Consulting, shares “My biggest struggle with PCOS is infertility. This comes secondary to mensural cycle regulation and insulin resistance. In order to regulate my cycle and balance my hormones, I follow the ketogenic diet, take inositols, vitamin D, and a prenatal supplement and exercise. I work with PCOS women of all shapes, sizes, conditions, and struggles. The main struggle, however, is weight maintenance and carbohydrate cravings. In order to overcome this, I typically recommend a low carb/anti-inflammatory diet coupled with increased water intake, exercise, and supplements. Stress management, sleep, and adrenal fatigue are also areas that I review and address.”
Making Your Health a Priority
According to Amy Medling, Certified Health Coach and founder of PCOS Diva, “Upgrading my mindset was my key to healing. Once I chose to make my mental, emotional, and physical health a priority, my quality of life and that of my family changed for the better. The diet and lifestyle changes we all made as a result of counting my value as equal to that of those around me have left us healthier, happier, and more personally fulfilled.”
Finding a Healthy Eating Plan That Works for You
Tallene Hacatoryan MS, RD, CLT states, “I have had PCOS for 7 years and it took me about a year to get the hang of the lifestyle change. Although you cannot heal from it, you can take care of your body to make it pretty much disappear, which is what I constantly try to do and what brought me to becoming a dietitian. The most effective way to overcome PCOS for me has been to change my diet to gluten & dairy-free. I have never felt better, and I dedicate my practice to help other women with PCOS feel the same.”
Adrienne Inger-Goss, RDN, LDN of the PCOS Symptom Relief Plan, shares, “I was diagnosed with PCOS in my early 20s while I was still in college studying food and nutrition science. As many dietitians can tell you, it’s easy to become hyper-focused on your eating patterns while you’re in school, and the curriculum doesn’t always paint a full picture of “healthy eating.” I was eating in a “textbook healthy” way, which was, in reality, a little rigid and definitely not great for my mental or even physical health.
I suffered from frequent blood sugar lows, mood swings, stronger-than-ever cravings for sweets, preoccupation with food (falling asleep thinking about what I’d be eating the next day), and episodes where I’d binge on foods and then resolve to cut them out the next day. Learning that I didn’t need to eat in an unduly restrictive way, and cultivating a relationship with food that is enjoyable, nourishing (including supplements!), and non-restrictive has been tremendously helpful for managing my own PCOS symptoms and emotional health.”
According to Julie Duffy Dillon RDN, CEDRD-S, “Weight loss is not a behavior and dieting does not cure PCOS. Rather, I encourage people with PCOS to be sure they are eating enough rather than focusing on cutting out certain foods. I also encourage people to listen to their body rather than torture it with low carb diets and over-exercise. The body will let people with PCOS know which foods feel energizing, improve sleep, and lower stress. Gathering these tools over time will connect a person with the type of movement that feels good rather than painful.”
There is no question that overcoming PCOS symptoms can be a challenge. Fortunately, there is an ever-growing support network of RDs and other PCOS experts who can help answer some of the many questions you may have.
As always, please keep in mind that you should consult a healthcare practitioner before making any changes to your health routine.
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