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Podcast Transcript

Episode 38: “Can I eat that?”: Busting Myths with PCOS Expert and Registered Dietitian Nutritionist, Angela Grassi

[Bouncy theme music plays.]

Sam: Hey, I’m Sam.

Ashley: Hi, I’m Ashley. And you’re listening to All Bodies. All Foods. presented by The Renfrew Center for Eating Disorders. We want to create a space for all bodies to come together authentically and purposefully to discuss various areas that impact us on a cultural and relational level.

Sam: We believe that all bodies and all foods are welcome. We would love for you to join us on this journey. Let’s learn together.

Ashley: Hey, everyone. Welcome back to another episode of All Bodies. All Foods. Ashley and Sam are here, and we’ve got a very special guest with us today. We’re going to be talking about a complex disorder that affects over 13% of reproductive age individuals. And chances are, you know somebody with this diagnosis and often many experts in their life want to offer unsolicited advice on how to manage it. One piece of advice we hear way too often is to lose weight. And with this, I’m of course, talking about Polycystic Ovarian Syndrome or PCOS. It seems widely misunderstood in how it affects each person differently. And yet there tend to be a lot of opinions regarding how to treat it from eating disorders to infertility, to unwanted hair growth. What is PCOS and what are the challenges or nuances we may encounter when working with someone experiencing both an eating disorder and PCOS. Our guest today is Angela Grassi MS, RDN, LDN. She is the owner of the PCOS Nutrition Center for over 20 years. Angela has been internationally known nutrition and health expert on PCOS. She provides personalized and compassionate nutrition consultations in person, phone or online to people around the world using the health at every size approach. Angela is the co-author of the PCOS Nutrition Center Cookbook: 100 Easy and Delicious Whole Food Recipes to Beat PCOS and the bestselling PCOS Workbook: Your Guide to Complete Physical and Emotional Health. Angela’s other book, PCOS: The Dietitian’s Guide, now, in its second edition is the most comprehensive evidence-based nutrition resource available for PCOS. Angela is a professional member of the PCOS Challenge, the National PCOS Association. The Androgen Excess and PCOS Society, the American Society of Reproductive Medicine, Academy of Nutrition and Dietetics and the following dietetic practice groups, nutrition, entrepreneur, women’s health and functional nutrition. In addition to her work at the PCOS Nutrition Center, Angela also serves as an adjunct professor at West Chester University where she conducts research on PCOS. Angela, thank you so much for joining us today.

Angela: Hi, Ashley. Hi, Sam. It’s so good to be with you both today. I was looking forward to this.

Ashley: Yeah, so nice to have you here. We met Angela, she spoke at our conference, and we couldn’t let her get away without being on the show. We just have so many questions, we work with so many clients that might experience PCOS. And to be honest, I was surprised at that statistic that it affects 13%. I guess I anticipated it to be a little bit higher. So, we can get into all of that in a little bit. But thank you again for being here and I’m just curious if you wouldn’t mind maybe just sharing a little bit about yourself and what got you into advocating and working with clients with PCOS?

Angela: Absolutely. It’s a pleasure to be with both of you today. I do specialize in PCOS and the founder of the PCOS Nutrition Center. But I got to tell you back in the day, like when I was first starting out as a registered dietitian nutritionist, I was working at The Renfrew Center. I don’t know if either of you knew that.

Ashley: Okay, I did not know.

Sam: I am shocked. I didn’t know that we had a former colleague on with us today.

Angela: I am a Renfrew alum. (everyone laughs)

Ashley: What center were you at?

Angela: So, I did my undergrad at Michigan State and then I did my graduate work at Northern Illinois University and a position was available at the Philadelphia inpatient site. You come out and back then you didn’t have so many of the locations that you have today, but I really wanted to continue doing work with people with eating disorders. So, I started out doing inpatient over in the Philadelphia location and then moved to outpatient. I did IOP, I worked a lot with Judi Goldstein with marketing to dieticians. So, I would go to a lot of conferences for dieticians and all kinds of stuff. So, it was a fantastic experience. And that is where I first started to see people with PCOS. In fact, I’ll never forget the very first patient I ever saw with PCOS was at Renfrew. And I remember my very first patient she was somebody who was diagnosed with bulimia, and she was also just diagnosed with PCOS. And she saw this doctor and the doctor told her that she had to eat like an Atkins style diet, and she was trying not to eat any carbs at all because this is what her doctor told her. But she couldn’t stop binging and purging, and she was binging and purging several times a day and she was just sobbing “What am I supposed to do?”.  Fast forward a few more years. I was diagnosed with PCOS myself after that. And I didn’t have a lot of the common Hallmark signs and symptoms of PCOS, and we can talk about those. But, for instance, I always had my period every month. So, it was totally overlooked that I had PCOS, but I started to have some symptoms that weren’t adding up for me and saw doctor after doctor and after maybe the third doctor, I saw a specialist in the city who I ran the correct labs and did an ultrasound of my ovaries and confirmed that I in fact, did have Polycystic Ovary Syndrome. And I remember driving home from that office visit being like, you know, I’m starting to see more people with eating disorders and PCOS. And if I was diagnosed myself and I didn’t recognize it, how are other dieticians and healthcare providers going to be able to help their clients? So, I decided to change gears a little bit and specialize in PCOS and I founded the PCOS Nutrition Center. And I really started off educating dieticians because that was my jam back then. And I wrote a book for dieticians and then started working with Doctor Stephanie Mattei who also worked at Renfrew. She did IOP with me and we together wrote a workbook called the PCOS Workbook: Your Guide to Complete Physical and Emotional Health. We also did a support group every week for patients with PCOS. So, it’s a very behavioral based approach that we developed, and it’s been really successful and just heard really good things that people have benefited from it. So that’s how I got to where I am today.

Ashley: That’s incredible.

Sam: Wow. So, maybe we can start, you know, you had talked about the signs and symptoms of PCOS and it, there are some common symptoms, maybe more obvious symptoms and some symptoms that are maybe lesser known. Could we start there? Because I would love for our audience to get an idea of what to look out for.

Angela: Yeah, absolutely. So, a Hallmark sign of PCOS is the periods are irregular. So maybe they stop altogether, or you get a couple of periods a month or every couple of months you might get a period. So that is definitely a sign of PCOS. And then another big sign is hair growth. So PCOS is a condition of androgen excess, so higher levels of testosterone. I always tell my female clients that all women have testosterone, even, you know, men have estrogen. It’s just your ovaries are producing more testosterone than your body needs and that can produce hair thinning like hair on the head or part of receding hairline. But then extra hair growth which we call Hirsutism, which can be in a central body pattern. It could be like lip area, it could be in the chin, between the breast, belly button area, groin area, just a little bit more coarse than normal. And then acne is another one that can happen from the higher androgens, weight gain, is another one just kind of out of the blue, no changes to anything. So those are some of the key hallmark signs of PCOS that are pretty obvious, and they all really have an impact on body image because they’re all very visual.

Sam: I see. And then you had said that your symptoms were not so common and I’m wondering what are some lesser-known symptoms that people might experience?

Angela: Yeah. So, for me, like I always did get my period. So, that’s why it was overlooked, but some people might get these bumps called Hidradenitis Suppurativa, these bumps usually like in armpit areas or groin areas that can be really painful. I mean, acne can happen to so many people, so it’s like how do you know what’s what? Then things that you can’t see are insulin resistance, you can develop high triglycerides, you can develop endometrial cancer. So some of them are hidden silent symptoms.

Sam: Are there certain populations that are at elevated risk for PCOS?

Angela: We see certain ethnicities like southeast Asian descent are a little bit higher risk. Indian descent is a little bit higher. But on average the, it’s estimated that up to about 13% of the population has PCOS.

Sam: Wow. I’m so glad we’re having this episode to spread awareness about this.

Angela: Absolutely.

Ashley: I’m just thinking, truthfully of like, you know, friends and family members that I know that have been diagnosed and how it could maybe be a tricky diagnosis because like you said, sometimes it can get missed, right? Or like I had a friend that with one provider she was diagnosed with it and then another provider said, no, I don’t think you have it. And so, I feel like it can feel so confusing.

Angela: Well, just to add to the confusion. So, it’s called Polycystic Ovary Syndrome. So, there’s cysts technically on the ovaries, but they’re not really cysts. They’re actually little immature follicles that never grew and developed and got released to be fertilized that they just hang out on the ovaries and those follicles are the result of the hormone imbalance, they’re not the cause of it. So that’s something that you can actually see on an ultrasound are these little, tiny follicles that resemble a string of pearls. But they’re not actually cysts that can grow and rupture and can be really painful that some women experience. So, there’s even been some talk of changing the name of PCOS to something that doesn’t involve, these cysts.

Ashley: I mean, you just taught me something because I genuinely believed it was somebody that had a higher ability of growth of cysts right on there ovary.

Angela: Right. But given the name that’s why there’s so much misinformation with PCOS. It’s hard because it’s really this intersection of a reproductive disorder and then an endocrine disorder too. And it’s like which field is going to manage it?

Sam: So, PCOS and eating disorders, let’s talk about the two when they co-occur. Are folks with PCOS at elevated risk for eating disorders?

Angela: Definitely, the research definitely supports that. And mood disorders too, like anxiety and depression, they kind of go hand in hand.

Sam: Right. So, I was curious, I know you did a whole presentation on this at the Renfrew Conference about how to support clients who have both. So, what are some of the challenges for folks who have PCOS and an eating disorder? What makes recovery challenging? What makes it challenging to treat?

Angela: Yeah. So, for some people that it really depends on the individual. Let’s say there’s somebody that wants to get pregnant and there’s some modifications they can make to maybe their eating or their exercise or they can take some supplements or do certain things or medications to help improve their fertility. But at the same time, if they’re really in their eating disorder, that needs to be addressed first. So, the eating disorder always comes first, addressing any symptoms that’s concerning to their health and emotional wellbeing. And so, you really have to treat those symptoms first before you get into a lot of the PCOS stuff. The PCOS stuff can be really educational like helping them understand their bodies and understand how these symptoms they’re experiencing, like what’s causing them and how these follicles develop on their ovaries and, and how to kind of balance their hormones out a little bit better. But if they’re really engaging in eating disorder symptoms that needs to be first.

Sam: Right. Right. And I imagine also, you know, you had said earlier how the medical advice unfortunately seems to be… you have PCOS, you need to lose weight. And I was hoping we can talk more about how problematic that medical advice is because I feel like that is what we read about, we hear about the most is how weight loss is somehow going to help with the PCOS symptoms. Or maybe even there’s some people who think a diet might cure it. Can we talk about this?

Angela: Yeah, let’s talk about it. It’s really a problem. It’s very problematic. And I think that language of telling people that, weight loss is going to help improve their PCOS can lead to people developing eating disorders and having a poor relationship with food in their body. And it’s not true. I mean, people can lose weight with PCOS and they’re still going to have higher testosterone levels. They can still struggle with infertility. They can still be at risk for having cardiovascular disease or diabetes. But that language and not everybody, you know, is in a bigger body with PCOS, anybody can have PCOS, it doesn’t matter what you weigh. Everyone is susceptible to having that. So, it’s really pervasive in the medical community unfortunately, and the guidelines, there are PCOS guidelines, that have just been revised and they’ve gotten a little bit better, and they do acknowledge that there is weight stigma that providers need to be aware of, but there are still some kind of language in there that references BMI and still emphasizes the importance of weight loss.

Ashley: I’m even thinking about someone who may also be experiencing infertility along with this and to be told… lose weight and this will all get better. That to me feels like such a painful message, especially if someone did go through that process and their PCOS is still present, and their infertility is still present. Like that language just feels damaging.

Angela: And then there are a lot, the majority of fertility clinics, will deny people fertility treatments based on their BMI.

Ashley: Really?

Sam: Wow.

Ashley: Wow. I think this conversation is so important because what I’m hearing right now and I’m imagining clients might be experiencing or even hearing the message of “I did this” or “I’m bad at this” or “My body is the bad body”. And that’s just not true. I mean, our bodies are built so differently, and we do have language to support each other but just hearing that, like, I can’t imagine how that doesn’t lead somebody down that shame spiral.

Angela: Exactly. And PCOS is genetic. I mean, it runs in families, we see a gene, it’s passed down. Back in the hunter and gatherer years, people with PCOS probably were the ones that survived because they maybe had a slower metabolism. They couldn’t have children so, they, you know, didn’t die in childbirth. They had a better life expectancy overall. But this language and putting the blame on the patient and saying, “You need to lose weight, it’s your fault” you know, “You have to fix this”. It’s just so wrong on so many levels.

Ashley: So, Angela with somebody that has PCOS, somebody that you’re meeting with, you said it’s an endocrine issue and a medical…

Angela: A reproductive issue.

Ashely: Right. So, obviously, if it’s reproduction and it’s endocrine, then they’re probably seeing two specialists for that as is. Then hopefully they’re seeing a nutritionist such as yourself, right? Then hopefully they’re potentially seeing a therapist as well. Can you talk about like that team approach and why would they also need to see a mental health therapist, a counselor in addition to the rest of the team that they’re working with? Why would that be important for them?

Angela: Yeah, that’s a really good point, Ashley. So yeah, someone with PCOS could see multiple specialists and that’s what can be really tricky, is that, you really have to have that communication and being in the eating disorder field, we already have that, like as a dietitian, I always work with patients who also are in therapy because so much comes up in nutrition and vice versa and, and they need that team support and feel supported. And I think that’s so important for patients with PCOS to have that too. And you know, we find that it can really help people and support people. There are so many people with PCOS that struggle with mental health disorders like anxiety and depression. And if you think of all the symptoms that I listed earlier, they’re all dermatological kind of visual symptoms. And there’s good research that supports that body image dissatisfaction and body image distress has a unique impact on someone’s mental health that it has a direct impact on their anxiety and their depression. And as you can imagine, it’s no wonder why.

Ashley: And so having that support to even process through that could just be super helpful, really for anybody diagnosed with PCOS and hopefully the diagnosis would even give them freedom in learning that like there’s a “why” to what is happening with their bodies.

Angela: Exactly. That it’s not all in their heads that some doctors will make them feel like. And the new guidelines that have come out actually stress that providers be screening all their patients with PCOS for eating disorders and mood disorders.

Sam: That’s wonderful.

Ashley: Meaning nutritionists or healthcare provider?

Angela: Any healthcare provider.

Sam: That’s incredible. I love to hear that when guidelines really encourage that. It’s so important because eating disorders so rarely travel alone, and we need to catch when they’re happening. I’m curious, Angela, when someone has PCOS and they’re in eating disorder recovery, what are some of the changes that they can make without dieting, without pursuing weight loss. What are some things to support, you know, their health or reduce symptoms?

Angela: Yeah. So, you can totally improve your health without even focusing on weight. And that’s the approach I take as a dietitian. And the first is practicing more mindfulness. So, mindfulness practice and mindful eating, being more present. We see the benefits of yoga, for example, can reduce testosterone can help reduce some of the other hormones as well and help with wellbeing. So, the emotional aspect can be really important. We see that moving our bodies can really help with lowering insulin resistance and improving fertility. And it could be like a 10 minute walk a day, like getting outside in nature. And then you’re exposed to vitamin D, which is a vitamin that helps with mood, but we know that vitamin D helps with lowering testosterone, for example. And vitamin D is really important for ovulation. So, anybody who’s trying to get pregnant, they really need more vitamin D. It’s, really important. So, looking at that, correcting any nutritional deficiencies, they might have vitamin D helping to manage their blood and sugar levels. So, a big part of PCOS is that there’s an underlying insulin issue that the majority of people with PCOS, regardless of weight, will have higher levels of insulin. And insulin is an appetite stimulant. So, it stimulates more cravings. It can promote weight gain like out of the blue as I described, and insulin can be managed. We also see a connection with insulin and anxiety. So, what can happen if somebody’s insulin is high and they eat certain foods that rapidly raise their glucose and insulin, then those levels can actually plummet. So, blood glucose levels can plummet and there’s research that shows when your glucose is low, you experience more anxiety.

Sam/Ashley: Wow.

Angela: Isn’t that interesting? It’s kind of like a physiological like ‘you got to get food in your blood sugar is getting low’. And we even see when blood sugar gets low, then cortisol increases because it’s a stress response and we do see higher levels of cortisol in PCOS. So, helping to manage blood sugar can be done with balanced eating and getting in some good like fiber is really helpful because it supports your gut health and it can help fill you up and it helps keep your bowel movements regular. It’s really good for a lot of things. But then adding in like proteins and fats to help balance out your blood sugar is really important.

Sam: I’m learning so much.

Ashley: I know, this is incredible. So, Angela, I was curious if we could kind of jump in with like some facts versus myths. I feel like we’ve all heard so much about PCOS. Does that sound good?

Angela: Sounds fun.

Ashley: We’re going to hit you with a couple of things and you just let us know fact or myth and then feel free to share about it. So, the first one PCOS is very rare.

Angela: I’m going to say that’s a myth. It’s actually pretty common. It’s just not diagnosed well. And so, a lot of times people aren’t getting diagnosed until later when they’re trying to have children, for example, or they’re like, in their thirties or their symptoms are starting to show up.

Sam: Are there diagnoses that get confused? Like misdiagnosed? I’m just curious if, like, what if you have PCOS, what might get diagnosed instead by mistake?

Angela: So, it could just be like infertility or hypoglycemia. PCOS is really a condition of exclusion. So, there is some certain set of criteria that you can look at like. The first is if you have irregular periods, the second could be if you have signs of the high androgens and then the third could be if you actually have those follicles on an ultrasound. So, they need to rule out like what other conditions could be affecting your periods or what other conditions are causing high androgens? Like could you have an adrenal tumor? Could you have Cushing’s disease? Could you have congenital adrenal hyperplasia? These are all conditions of androgen excess.

Sam: Hm. Got you.

Ashley: Okay, what about this one? I gave myself PCOS with my lifestyle.

Angela: False. So, a lot of people blame themselves and say that it was my eating, I caused this, my food choices led to this weight gain and that this led to the hormone imbalance. And again, PCOS is genetic. So, it is not your fault. You do not cause your PCOS.

Ashley: I just want to say like we were all at the Renfrew Conference, and we heard one of our Keynotes, Whitney Way Thore, and she read a letter that someone had sent her that specifically called out her PCOS diagnosis and essentially said it was her fault. So, it’s nice to hear you say that, Angela, like remove “I didn’t do anything to cause this”. There was nothing I could have done and so removing that “I think” is just so critical for those that might receive this diagnosis, especially if they’re already struggling with, you know, literally anything else that anxiety that you’re mentioning, the mood and eating disorder or body image. Removing yourself as the blaming factor is so important here.

Angela: So important.

Sam: And true for eating disorders too. I think sometimes people feel like they gave themselves an eating disorder and they gave themselves PCOS. And it’s a lot of the work is like trying to undo all that shame around.

Angela: There’s so much shame with PCOS, so much shame.

Ashley: So, another one we’ve kind of talked about today. If I lose weight, I’ll improve my PCOS symptoms.

Angela: False. Not at all.

Ashley: Being diagnosed with PCOS means you have to cut out carbs, sugars, gluten and dairy.

Angela: False. You can eat all these foods and still improve your insulin resistance and still lower your cholesterol if you have high cholesterol and, still get pregnant. So, yeah, it’s definitely a myth. Avoiding any kind of food groups is going to just lead to an unhealthy relationship with food and disordered eating and worse than an eating disorder.

Sam: It can fuel binge eating disorder, binge eating episodes. A lot are surprised when they realize the connection of restriction and binge eating. It’s a cycle. So that’s such a relief I think for our audience to know they don’t have to cut out anything and damage their relationship with food in the process. So that’s a wonderful thing.

Angela: Diets don’t work for PCOS.

Sam: Or anything else.

Ashley: Okay another one, PCOS causes binge eating disorder.

Angela: False. PCOS does not cause binge eating disorder. There is a correlation between the two, but there’s research that actually suggests it’s from the hormonal aspect like insulin is an appetite stimulant. And when you get low blood sugar that sets you up to want to binge because your blood sugar is so low, and your body is like forcing you to get more food in and quickly. but PCOS itself does not cause binge eating disorder.

Ashley: And just to reiterate what Sam was saying, somebody might have PCOS but then might restrict, like cut out those certain food groups. We know exactly what you were just saying, Sam, we know that restriction causes binging.

Angela: Cutting out those food groups.

Sam: Like it can contribute to it.

Ashley: You can’t get pregnant with PCOS.

Angela: Totally false. I have two children. I didn’t struggle to have children or infertility treatments. The majority of patients with PCOS do go on to have children if they want them. You know, there’s so many advancements right now in fertility treatment and we know that lifestyle changes can make a difference. Some supplements can really help improve ovulation and fertility. So, I hate it when a young person gets diagnosed with PCOS and the doctor’s like, well, you’ll probably struggle to have kids or you might not be able to have them and to tell someone that, you know, as a teenager or a young person is just unfair and not true.

Ashley: Last one. PCOS only affects people in larger bodies.

Angela: False. PCOS can affect anybody.

Ashley: So, I would say that it’s safe to say that in general there’s just a lot of misinformation out there with PCOS and I mean, that’s truly why Sam and I even started this podcast. There’s a lot of misinformation out there about eating disorders as well. And so, I’m curious what advice might you have for somebody who has maybe been newly diagnosed with PCOS but who has maybe also in the past had an eating disorder or disordered eating, body image issues, mood disorders. What would you suggest their next or their first right step be once they receive that diagnosis?

Angela: That’s a good question. I mean, I really think it would be important just to meet with a therapist just to go over the, the process of receiving a diagnosis and what that means to them, what impact and for some support and then definitely reaching out to a registered dietitian nutritionist that has that background in treating people with eating disorders and that’s not going to prescribe, a diet or tell you to eliminate food groups because there are some dietitians out there unfortunately, that are promoting some of these myths and stuff. So, I think that can be really helpful just to get that education. When I meet with somebody, I go through a whole PCOS nutrition assessment. And we talk about their food choices and their symptoms, but I really like to spend time educating them. So, they really understand what PCOS is, how it’s connected to the symptoms they experience and what they can do, what’s in their control because so many of these symptoms seem out of control and what they can do to get a handle on this because it can get better. A lot of people see it as doom and gloom, and they struggle so much with their symptoms. It’s hard to see beyond that but they can be improved.

Ashley: Yeah.

Sam: Thank you, Angela. How can our audience connect with you? How can they learn more from you or are there any other resources you’d like to share?

Angela: Yeah, so they can visit the PCOS Nutrition Center. It’s easy to remember. It’s and that’s the handle on Instagram and TikTok @PCOSNutrition. And I definitely would recommend if anyone has had some distorted eating or history of an eating disorder or mood disorder, checking out the PCOS Workbook: Your Guide to Complete Physical and Emotional Health because it is written by myself, a dietician, but also a therapist and it’s very behavioral based. So, it’ll work on areas like nutrition but stress and body image and mood. So, all of that is in there and it, it can be really helpful tool. Just reaching out and, and don’t be afraid to ask for help.

Ashley: And that workbook, Angela, that you mentioned, like I could go purchase that for myself, right? Like it’s not necessarily something that I have to have a dietitian, or a therapist for.

Angela: You can get off Amazon, you can get it off of the PCOS Nutrition Center website.

Ashley: What the last thing you would like to leave with our audience today?

Angela: I think just to reiterate that PCOS can get better and even though you have it and there’s a lot of difficult aspects related to it that you can learn to live with it and it can just be one part of your life. It doesn’t have to be a consuming part of every minute of every day that sometimes it can feel like, and don’t be afraid to reach out for help because it can get better.

Ashley: Awesome.

Sam: Thank you so much, Angela for joining our episode today. I learned so much. We busted all the myths and you really helped spread hope for folks out there who might be struggling with PCOS. So thank you so.

Angela: Well, that’s good to hear. It’s always my pleasure and would love to talk to you guys again. Maybe we’ll do another segment on this.

Ashley: That sounds awesome.

Ashley: Thank you for listening with us today on All Bodies. All Foods. presented by The Renfrew Center for Eating Disorders.

Sam: We’re looking forward to you joining us next time as we continue these conversations.

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