Episode 162: In this interview, I chat with dietitian and eating disorder specialist Julie Duffy DIllon. Our conversation primarily centers around PCOS - how it overlaps with eating disorders, how it's diagnosed, and how the current medical advice to deal with it needs work.
Julie Duffy Dillon is a Registered Dietitian, Eating Disorder Specialist, and Food Behavior Expert partnering with people on their Food Peace journey. She helps people with PCOS promote health without diets through her online course found at PCOSandFoodPeace.com. Julie produces and hosts the weekly podcast, Love Food.
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Chris Sandel: Welcome to Episode 162 of Real Health Radio. You can find the links talked about as part of this episode at the show notes, which is www.seven-health.com/162.
A couple of weeks ago, I mentioned that I’d reopened my practice to new clients. I do this twice a year. Client work is the core of my business and the thing I actually enjoy the most. After working with clients for the last decade, I feel confident in saying I’m very good at what I do.
When I reflect on the clients I’ve worked with over the last couple of years, there are a handful of areas that come up the most. One of the biggest is helping women get their period back, so recovery from hypothalamic amenorrhea, or HA. This is often a result of under-eating and over-exercising, and is almost always coupled with body dissatisfaction and a fear of weight gain.
The work with these clients, as with really all clients, is a mix of understanding physiology and how to support the body, but also being compassionate and understanding psychology and uncovering the whys behind these clients’ behavior and figuring out how to change this. I’ve even had clients regain their periods after 20 years being absent, after being told it would never happen.
I also work to help clients who are disordered eaters or have been previously diagnosed with an eating disorder. With these clients, there are symptoms that are commonly occurring—water retention, poor digestion, always cold, peeing all the time, especially in the nighttime, no periods or bad PMS symptoms, low energy, poor sleep, low thyroid. They also have common mental and emotional symptoms—compulsion to exercise, fear of certain foods, anxiety, low mood or depression, poor body image, fear of weight gain.
With these clients, it’s using that same mix of understanding science and compassion to help them recover. I know that full recovery is possible, and I’ve had many clients who’ve had multiple stays at inpatient facilities where nothing worked for them, but they’ve now been able to get to a place where they are fully recovered.
The final area is helping clients transition out of dieting and learning how to listen to their body. They’ve had years or decades of dieting, and nothing’s worked. They know it’s a failed endeavor, but they just don’t know how to do anything else. How do they listen to their body? What should they eat? They’re confused. How do they deal with the weight gain?
With this work, it’s often a combination of intuitive eating, a non-diet approach, my nutrition understanding, and being able to guide clients towards listening to their body, that helps them be able to put an end to dieting habits and truly know how to nourish their body and to look after it.
These are the kinds of clients that make up the bulk of my practice. I’m very good at helping them get to a place with their food and their body, and even their life, that they think is impossible.
If any of these scenarios sound like you and you’d like help, then please get in contact. You can head over to www.seven-health.com/help. There you can read about how I work with clients, and you can apply for a free initial chat.
At the time of recording this intro, I have just three spots left. I would imagine that all those will be booked up by the end of next week at the latest. After this, I won’t be taking on new clients again until the start of 2020. If you’re interested, please get in contact. The address, again, is www.seven-health.com/help, and I’ll also include that link in the show notes.
Welcome to Real Health Radio: Health advice that’s more than just about how you look. Here’s your host, Chris Sandel
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Hey, everyone. Welcome back to another episode of Real Health Radio. I want to say thanks to everyone on their kind feedback about the new website. I’ve had a number of people get in contact to say how much they like it. I’ve also had some people reach out and tell me about issues they’ve noticed. This is appreciated, so if you do notice something wrong, please drop me an email at info@seven-health.com and I can pass it over to the developer to get it fixed.
This week on the podcast, it is another guest interview, and I’m speaking to Julie Duffy Dillon. Julie is a registered dietitian, an eating disorder specialist, and a food behavior expert partnering with people on their Food Peace journey. She helps people with PCOS promote health without diets through her online course, found at PCOSandFoodPeace.com. Julie produces and hosts the weekly podcast Love Food. You can learn more about her at JulieDillonRD.com.
I’ve been aware of Julie for a couple of years now. She’s someone who has appeared on many podcast shows. She’s carved out a name for herself in the area of PCOS and is really a fantastic resource on this topic. I’m actually happy that I waited to get her on the show, because with the new longer format, we were able to give the topic a fairly extensive exploration. The show is not a substitute for her longer courses that she offers—that would go into many, many hours—but it is a really great starting place.
We started the episode, as usual, talking about Julie’s background and how she finds herself doing this work. Interestingly, unlike most guests, she doesn’t have her own story of dieting or disordered eating. She managed to bypass all this.
We then spend the rest of the episode really singularly focused on PCOS. We chat about the symptoms and how it’s diagnosed. We talk about the particulars of the diagnostic criteria and why it can be somewhat ambiguous and how this can lead to misdiagnosis. We talk about the different types of PCOS. We then go through various dietary and lifestyle recommendations and we look at what is myth and what is actually true and actually helpful.
I really enjoyed this conversation. I work a lot with women who suffer with hypothalamic amenorrhea, when a woman is not getting her period, and then Julie obviously works a lot with PCOS, so it was nice to be able to chat about what we’ve noticed in our respective client populations and where there are similarities or where there are differences.
There are a couple of times when Julie is speaking that you can hear a lawnmower in the background, but that’s just podcasting for you. But that is enough of an intro; here is my conversation with Julie Duffy Dillon.
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Hey, Julie. Thanks for joining me on the show today.
Julie Duffy Dillon: Thanks for having me on, Chris. I’m excited to chat about PCOS.
Chris Sandel: Yeah, definitely. That is really what I want to chat with you all about, all things PCOS. You are the go-to authority when it comes to PCOS, especially dealing with it while focusing not on weight loss.
PCOS stands for polycystic ovary syndrome, in case people haven’t heard the acronym before. This isn’t a topic I’ve done an in-depth podcast on before. I’ve had guests on and mentioned PCOS as part of their story, but really never got into the science of it. I just want to spend this time focusing on that and really picking your brains about PCOS.
Julie Duffy Dillon: I’m excited to talk about it. It’s one of my favorite things. I could spend a good month just talking about PCOS, especially from a perspective of like, what about if you don’t want to pursue weight loss?
Chris Sandel: Definitely. I don’t think that’s what’s being talked about by the majority of people, so it will be great to hear your take on it that way.
To start with, do you want to give listeners a bit of background on yourself, a brief bio of sorts? Who you are, what you do, what training you’ve done, that sort of thing?
Julie Duffy Dillon: Sure. I’ve been a registered dietitian in the U.S. for 20 years. I started out as a pretty typical dietitian that helped people with the pursuit of weight loss. I worked mostly with diabetes; I was a diabetes educator for the first seven years as a dietitian. While I was getting really into working with diabetes, especially with kids, I found that I just couldn’t help people lose weight. [laughs] I was like, what’s wrong? I guess I’m not trained in how to do this.
I found so many people that I worked with were experiencing stress and depression, anxiety, and family dynamic stuff, so I decided I needed to be better trained in counseling. So I pursued a Master’s in mental health counseling. When I was done with that, I was like, all right, now I can help people lose weight. Then when I got this job, I was like, wait. This is still not working. What’s going on?
So I dove into the research. In that place, there was probably a good six months where I was head down, full of shame, just realizing, oh my gosh, I’ve been really torturing people with weight loss. I had to really just sit in my own bias that I had been taught.
From there I decided I was not going to put people on diets anymore, and I was going to be using only Health At Every Size informed approaches. This was back in I think 2005-2006. It was right around then that I remember working with my first client with PCOS. I had worked with people with PCOS before, but never from a place of completely “I’m not going to do any diets.”
I can remember taking out my big nutrition textbook that the dietitians—I don’t know if it’s worldwide, but in the U.S. we have this big dietitian book by Krause. I don’t remember the name of the book, but if you’re a dietitian you know the Krause book. It’s this huge, four-inch-thick book that we all had to lug around.
Chris Sandel: Is it like the dietitian’s equivalent of the DSM?
Julie Duffy Dillon: Yes, exactly, except it’s not a paperback and it’s like 8” x 12” instead of a smaller book. So I remember sitting with this first client with PCOS as a HAES informed dietitian and pulling that off my bookshelf and looking through it while she’s sitting in front of me. I didn’t know what to do. There was a little tiny paragraph on PCOS, and it basically said “treat it like diabetes and help them lose weight.”
I’m like, well, that whole diabetes thing—there was something different about PCOS. I couldn’t put my finger on it yet, but since I had worked with diabetes, I’m like, what people are bringing in is just different. Even though people with PCOS can get diabetes, there was still something different. But I also know diets don’t work, so why would they work for PCOS?
Seriously, for about 10 years I just looked and looked and looked for people who were willing to train me to work with PCOS without focusing on weight. One person in particular that was super helpful—she passed away in 2017; her name’s Monika Woolsey. She wasn’t HAES informed in the sense that she was informed of it, but she didn’t always practice from that way. She was also willing to not put weight on the table as we were discussing ways to treat PCOS. She took me under her wing and taught me a lot of different strategies.
From there I’ve just been putting things together. Honestly, since I don’t experience PCOS, I appreciate that there’s a privilege of the information I’ve come by, because it’s really just people I’ve been working with PCOS, what they’ve told me has worked and what hasn’t. For the first two years I was kind of throwing spaghetti on the wall and seeing what stuck. So we’ve accumulated what has stuck and what has helped a lot of people, what has helped some people.
We call this practice-based evidence. We don’t have research that’s not weight-focused when it comes to PCOS. It’s really hard to come by. So using this practice-based evidence along with as much evidence as I can get in the research has been guiding my practice ever since.
I have a practice in Greensboro, North Carolina, and I also have a podcast called Love Food where I help people—some people with PCOS, but it’s really for anybody who has a complicated relationship with food. So that is the last 20 years, what I’ve been doing. Hopefully anybody with PCOS or someone listening who maybe knows somebody with PCOS, I hope this conversation helps to clarify a little bit about what’s going on and things people can do without focusing on weight.
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Chris Sandel: I do want to dive into the PCOS piece, but I just want to find a bit more about you. How did you end up becoming a dietitian? Were you always interested in science, and this is how it went from there? Or was there some other way you got into it?
Julie Duffy Dillon: There was another way I got into it. It’s funny because after you’ve been a dietitian for 20 years, I realized nobody’s going to take my license away anymore. [laughs] There’s a certain story I used to tell people about how I became a dietitian: that I got interested in nutrition in high school, I was a cross country runner—and I was—and I wanted to improve my times, so I started looking into nutrition—which I did. But that’s not really why I wanted to be a dietitian.
I really wanted to be either an artist or a therapist, and in order to go to the college I wanted to go to, my parents said, “No, you can’t major in those.” So I was like, “Okay, let me see. What am I going to major in?” I’m just going through the catalog—because it was a big book back then; it wasn’t online—and I just pointed to a random major and I said, “I want to major in this.” It was dietetics. They said, “Okay, that’s fine.” I liked science, so when I read through the requirements, I was like “Ooh, I basically am about a class shy of a minor in chemistry. I hope I like it.”
But what I found is that I was not the typical dietitian. I’m still not, because I am more big picture. I’m someone who is definitely more built as a therapist instead of just a detail-oriented person, and yet I struggled with that for a long time. But I find it to be my strength because so much of our world is so focused in on these exact numbers, but they’re missing the parts of health and life and relationships, and that’s where I see I can guide things.
Studying nutrition allowed me to do things with connection and helping people process things, but it was just different than I imagined. So that’s the real story of how I became a dietitian. Seriously, I didn’t start telling that story till like 10 years ago because I needed to have the story that you put on your application letter. [laughs] That’s the real story.
Chris Sandel: The part about you saying you’re bigger picture, less detail-orientated, I would very much put myself into that same category and I would say that that’s one of my strengths. When you said you were going down the page, picking becoming a dietitian, and how well it has worked out for you, the thing that came to mind was arranged marriages. [laughs] We think in the West you have to find someone, you fall in love, and then it all works out really well, and then you have the arranged marriage, and maybe after 40 years, they’re just as happy.
Julie Duffy Dillon: Right. It’s kind of funny how it worked out, right?
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Chris Sandel: In terms of you and growing up and food, how much of an importance was that when you were a kid?
Julie Duffy Dillon: What I appreciate about my experience with food is I’ve never been marginalized because of my body—with the exception of being a woman. But besides that, I’m a white woman, I’m cisgender, I’m straight and Christian, so I’ve walked this path that is super privileged. I never was pressured to go on a diet, and I think that’s why I never did.
As I was learning about nutrition in high school, diets didn’t seem interesting to me. I thought they were boring, but a lot of that was because of my lived experience. It was the privilege, basically, coming through. But as I started going through college and learning about diets, I definitely thought “I’m rejecting this. This is not something that I think is associated with.”
But yeah, for the most part growing up, my relationship with food—I was raised to be an intuitive eater before that phrase was around. I think we had some loose structure with food, and there wasn’t really any big deal about it. It’s probably because there was enough food. My parents didn’t have to worry about making sure there was enough food. I never was told, “don’t eat too much.” Well, there were a few times where they said “you have to eat all the Brussel sprouts,” and that’s the one food I can’t eat now. [laughs] I can’t eat Brussel sprouts.
But besides that, the way of relating to food—to me, I feel like it was providing safety but also just neutral. It was considered a neutral or a pleasurable thing and that’s about it.
Chris Sandel: Wow, I think there’s some more overlap between me and you because I had a very normal experience with food. My parents never dieted. I can’t remember any kind of dieting scars or food scars from growing up. I know I’m an anomaly like that, because that’s just not most people’s experiences.
Julie Duffy Dillon: Especially people who do the work that we do. I definitely lack insight because I don’t have experience with the struggle. The older I get, the more I can connect with it just because I’m 44 years old and going through the aging process, so I can see a little bit more the pressure to look a certain way. But I’m so grateful to be in this community where I’ve built up an arsenal of body-liberating phrases. They’re very protective.
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Chris Sandel: You mentioned before that the first bit that you did when you were a dietitian was around diabetes. How did you find yourself in that area?
Julie Duffy Dillon: The first six months of my career as a dietitian, I worked in really general areas of a big hospital. It was at Wake Forest University in North Carolina. They have a pretty big hospital; I think it’s like 1,000 beds. There were maybe 20 dietitians at the time working there, so I got a really common first job where they gave me all the cardiac floors and some outpatient nutrition stuff.
About six months later, one of the pediatric dietitians left, and that was a coveted spot. Those dietitians never left. I didn’t have any training in pediatrics, but I thought, ooh, that sounds interesting. Those things didn’t open up very much, so I said, “I’ll do it!” They said, “Okay.”
This particular pediatric nutrition job was really unusual because instead of covering hospital floors, I was handed a beeper and I was paged whenever the pediatric specialists—picture pediatric GI, endocrinology, genetics, all the pediatric specialists had their little clinic area, and when they saw their patients—not the inpatient ones, but just the outpatient clinics—whenever they needed a dietitian to come, they would page me. So I just ran around all day working with these specialists.
The clinic that was the busiest was the pediatric endocrinology clinic. There were only two pediatric endocrinologists at the time in the state of North Carolina, so he was really busy. I ended up working with a lot of kids at higher weights. The endocrinologist ended up becoming someone who was seeing a lot of kids at higher weights, and because he was an endocrinologist, he often was the one that was doing any endocrinology workup to see if that was a part of the body size conversation.
It got me into that place of really talking to more people at higher weights and finding out their lived experiences. That led me to get the certification as a diabetes educator and got me interested in what’s going on with weight and family dynamics, like I mentioned earlier. There were some really interesting things that I was starting to notice.
From there, I remember thinking “I just don’t know what to do because I’m not helping people.” After the first three or four people that it “doesn’t work”—either people weren’t losing weight or they weren’t coming back or something like that—a lot of times people say that’s just because they weren’t being compliant, but after 10 people or 20 people or 30 people, obviously there’s something up with me. [laughs] It can’t just be the other people. I’m the common denominator here.
So I remember finding motivational interviewing. The pediatric endocrinologist and I got into using that. He ended up being a PI in a study with the NIH and the CDC, and that got me connected with all these counselors, because we got MI training. This was back in 2000 or 2001.
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Chris Sandel: Can you just explain what motivational interviewing is, briefly, just so people understand?
Julie Duffy Dillon: It will be brief, because I don’t consider myself an MI (motivational interviewing) expert. It was my entry into counseling and mental health, but I don’t consider myself an expert or a trainer in it.
It’s a person-centered way of interacting with clients that allows the client to know that they’re the ones in charge. I feel like that’s what I still stick with. I’m definitely person-centered in how I work with my clients. Instead of me, the dietitian, barking orders, it’s more of “Hey, what do you need today? How can I help, if at all?” and “These are some things I found in research. What do you think about it? What do you think you want to do about it, if anything?”
Again, it’s framing it to be more of a partnership, or even really, the client is the one that leads the sessions and I’m just there to help sort through and have them take the lead and go from there. That’s what I think. I don’t know if you have anything you would want to add about MI.
Chris Sandel: No, I agree with everything you said there. I’m trying to think of what else I’d add. I would say in the same way as you, I know of motivational interviewing. I’ve read the book. I more use it as an overarching principle of the way I think about it as opposed to a technique or following it by the book.
But yeah, it’s very much about using the person as a guide, finding where their innate motivation is and stoking that a little bit in terms of the questioning that you have. Very much having them be the ones that want to make the changes, and whatever the order of the change is going to be, have them come up with it—which I know sounds kind of weird for people to start with, I guess, if they’re like “but you’re meant to be the expert.” But actually, from a compliance standpoint, from getting people to be sustainable with these changes, it really does help. Since going that route for my own practice, I think I get better results. I think sometimes it’s a little slower, but over the long term, it actually makes a lot better changes.
Julie Duffy Dillon: Yeah, and when you were talking about MI, one thing that I remember learning about is that it’s not even really a technique; it is more of an orientation and informing how you do things. It’s not meant to be this trick. It sounds like for both of us, it informs us and we’ve added other things to it. The people who are behind MI, I think they would be glad to hear that.
Chris Sandel: Yeah. Sorry, I took you off down this tangent.
Julie Duffy Dillon: That’s okay.
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Chris Sandel: So you went and did that extra training, and then what happened when you started to come back?
Julie Duffy Dillon: While I was doing the MI study, I started talking to more therapists, and I realized I really wanted to still be a therapist. I still wanted to be trained as a counselor. So I looked into doing that. I applied to a bunch of schools. Where I live, I didn’t know it at the time, but literally half a mile from my house was one of the top three counseling schools in all of the U.S. I didn’t know it was that highly ranked. I was like, “Oh, it’s a counseling program. I’m going to apply to it. Oh, I got in. That’s great.” Then when I got there, that year they had been ranked Number 2 in the nation. I was like, “Oh, I should’ve been nervous applying to this program, but I didn’t know.” [laughs]
But anyway, it was hard because I had to say goodbye to that pediatric position, which I did for three years where I was bouncing around with all those different physicians. It was wonderful because it allowed me to clinically learn so much about medicine. Where I was working, it was a facility that had residents and med students, so I got to learn a lot. So I really appreciated it, but I also knew that I wasn’t prepared.
That training took two years, and when I got done I found a job—actually, at this point in my career, I didn’t want to do any work with eating disorders at all. I just wanted to work with food behavior. I also had been living off $6,000 a year, which was hard for me to do, so I needed a paycheck.
I found a job that needed someone in a diabetes clinic to be a counselor role, to run support groups and help people with coping with the diagnosis of diabetes, but then they also needed someone to run the eating disorder side of things. I’m like, well, I guess I’m going to like eating disorders now. I saw my first couple patients with eating disorders and I was like, “Oh, I really like this. This is really wonderful. This is something I should’ve been doing all along.” That’s when I really started to move away from specializing in diabetes and more into eating disorders.
Honestly, that’s how PCOS and me really got connected. I didn’t want to do anything else with medical conditions unless the person had an eating disorder, but I just kept getting so many people who an eating disorder who also had PCOS. I thought, well, I guess I’ve got to figure this out, because nobody else is doing this. So let’s just figure this out so then we can have something to tell people, to help heal the relationship with food. It was a messy time, but I’m really grateful for it now.
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Chris Sandel: With that overlap between eating disorders and PCOS—I’ve had clients who’ve been given a diagnosis of PCOS, and then because of the recommendations around that, in terms of you need to lose weight or you need to go low-carb or whatever the dietary recommendations were that were often given to them by their doctor, that then took them down the route of disordered eating, potentially even ending up with an eating disorder. Is that often the picture of how it was presenting for you, or it was different?
Julie Duffy Dillon: Yeah, definitely. What I noticed was that so many of my clients with eating disorders, whether they had PCOS that was diagnosed or it was undiagnosed—because sometimes it would just come to the surface as we were working together—there was a focus on weight. Not everyone with PCOS, but many people with PCOS end up having a larger stomach. For some people, it’s just how the condition is experienced. The high circulating insulin often is one of the reasons why people say that happens.
A lot of my clients with PCOS were told, “You need to lose weight. The weight caused this”—which is not true. I said that with so much firmness, but that’s actually false. But people were told that their weight caused it or they ate something wrong and that caused it. Kind of a similar script that we often will hear with diabetes.
So people were doing everything that they could to comply. My clients with PCOS would tell me—I’m not going to name the amount of calories–but they were eating way below the amount their body needed just for their liver. They’re like, “I’m not losing any weight.” They would tell their doctors or healthcare providers or dietitians, and they either said “You just need to try harder” and/or the clients weren’t believed.
Some people would tell me, “My doctor told me to eat”—I’ll throw out a calorie amount that I’ve often heard—“1500 calories. But they didn’t ask me how much I’m eating, and I’m eating half of that and I’m still not losing weight. How do I do this?”
For most people, when you go through starvation, it doesn’t just stay in starvation because the human body is wired to survive, as we know. Through evolution we’ve figured out ways, like “hey, you need to eat now.” We dream about food, we think about food, we get hunger, cravings, all these things our body does just to let us know “hey, you need to eat or you’re going to die.”
Our clients with PCOS that were cutting out so much food, whether it’s calories or carbs or over-exercising or all those, eventually there’d be a time where they would start eating, and it would be hard to stop. If you’re on a deserted island and food falls from the sky, you’re going to eat it all. That’s what the body thought. So for a lot of people, then they felt so ashamed of that experience, so then a relationship with food that was more of a binge-restrict cycle started happening.
For the majority of people with PCOS I work with, that’s the path they experience that leads them to an eating disorder. Of course, not everyone looks like that, but that’s probably the most common. The thing that’s such a bummer about it is the “binging” or feeling out of control or feeling addicted or the emotional eating or stress eating—whatever people want to call it, however you identify it—in the end, really that’s what’s saving a person. It’s keeping them alive, but it’s the thing that has the most shame.
That’s where we need to handle with care and say, again, this is saving you. That’s where I’ve seen my role since I started working with PCOS. How can we help people first know that we believe them, and then also, let’s help you figure out what you need to feel better. That’s what’s going to promote health.
Chris Sandel: I think, as you said there, framing it as “this is a body response to restriction” makes complete sense. I’ve done two whole episodes on the podcast all about the Minnesota Starvation Experiment, so people can definitely check them out. I’ll put them in the show notes. I go into a great amount of detail about what happens as part of that.
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I want to back up a little bit and just start with the basics of PCOS. What is PCOS?
Julie Duffy Dillon: The PCOS definition that I think is important to know is it’s an endocrine disorder that has reproductive, metabolic, and psychological consequences. Yes, it’s called polycystic ovary syndrome, so “ovary” is in there, but it doesn’t just affect someone’s reproductive system. It doesn’t actually even start in the ovaries. Some people don’t have any effect on the ovaries. They need to change the name. But for right now, PCOS is what we’ve got.
The reproductive consequences of PCOS often look like heavy periods or painful periods or infertility. I feel like that’s what most people will think about with PCOS. It is the number one cause of ovulatory infertility. Yet not everyone wants to have babies. Oftentimes when people get diagnosed with PCOS, the doctor says, “Here’s birth control and come back when you want to get pregnant. This is all I’ve got for you,” which is a big bummer because there’s lots you can do—and not everyone wants to get pregnant. What are they supposed to do?
There are metabolic consequences, and that’s the insulin resistance I was talking about earlier, high cholesterol, high blood pressure. A metabolic syndrome type of experience is pretty common.
There’s also psychological consequences. What research points towards right now is it probably starts in the hypothalamus. One of the very first signs of PCOS is a mood disorder before puberty. A lot of my clients with PCOS will often say “Oh yeah, I definitely had a mood disorder when I was 8, 9, 10.” Part of the PCOS experience is it messes with hormones, and our mood is directed by hormones. Depression, anxiety, ADD, bipolar disorder, those are all mood disorders, so people with PCOS oftentimes will have that.
I do feel like the mood disorders I see with PCOS are different than people without PCOS, especially the anxiety piece. The anxiety seems to be much more intense. Things that normally would treat anxiety for other people, the PCOS brain just laughs at and says “that’s not going to do anything.”
I was talking to Christy Harrison on her podcast a few months ago on Food Psych, and we were talking about that part and she said, “That’s really interesting. I wonder how the insulin resistance has to do with the anxiety.” I had never really thought of this. The insulin resistance, basically the body’s not able to get enough nutrition because it’s not able to use the glucose. The cells are starving, so the body may even be in this place of anxiety because it’s not getting nourished. To me, that is such an important connection. Maybe it has something to do with it.
To me, why that’s so important is because the pressure to lose weight and all the weight cycling that people with PCOS experience is probably making their anxiety worse—along with all these other things, but it’s probably something that’s leading to the mood disorders. Again, that’s just conversation theory and things like that, but I think there’s something to that.
Chris Sandel: I wonder then, thinking from a cells energy perspective, have there been any studies looking at mitochondria of people with PCOS versus the general population and how that’s affected?
Julie Duffy Dillon: I don’t know. That would be interesting. That would not be a research study that I would be—that sounds very detail-oriented. [laughs] But important. I have a feeling there are some studies like that, and there’s probably someone listening who knows exactly the ones that we need to read. But I don’t know of anything in that area.
00:38:25
Chris Sandel: You mentioned there’s three main buckets that get affected. You’ve got reproductive, you’ve got metabolic, and you’ve got the mental side of things. For the people who have it, how often will it be in just one of those, in two of them, in all of them?
Julie Duffy Dillon: It depends, because there seems to be different types of PCOS, but for the most part, most people I work with have all three in some way, or they will at some point have all three in some way. I say that loosely, because there are some people who really don’t have any reproductive consequences associated with their PCOS. That’s not the typical PCOS, but it certainly is some people’s experience. That’s just something to keep in mind.
As I’m saying this, I forgot to mention even another part of the reproductive side of PCOS that is important: hyperandrogenism. High androgens is something that’s a clinical part of it. People with PCOS will have higher circulating testosterone than people without. That is one of the reasons why things like ovulation is affected, and it also affects things like appetite. It may also have something to do with insulin levels as well.
That’s something I forgot to mention that I think is important because basically, getting diagnosed with PCOS is kind of this weird experience because it’s a diagnosis of exclusion. They have to rule out a bunch of things, and if those are ruled out, then “oh, you may have PCOS.” People oftentimes have this period of about a year where they’re like, “Do I have it? Do I not? What do I do?” But having high circulating testosterone for some people is one of the diagnostic criteria that’ll seal the deal for them.
00:40:15
Chris Sandel: What are the different diagnostic criteria for it?
Julie Duffy Dillon: The Rotterdam criteria, the person would need to have two out of three criteria. One of them is evidence of high androgens. It could be high testosterone, or it could just be evidence of high testosterone, which could be an increase in facial hair or hair loss. Another one is some kind of issue with menstruation, which could be no periods or irregular periods or heavy periods. Then the other one is cysts on the ovaries.
Then there’s also a couple conditions that need to be ruled out, but those criteria right there, if someone has two out of three of those, then they have PCOS by those criteria. And those are still the most recommended ways to diagnose it. There were some new guidelines released in 2018 that started to hint at looking at a different hormone, but there’s just not enough evidence yet to use it, so for right now that’s still the most up-to-date way to get diagnosed.
Chris Sandel: Okay, because even if I’m thinking about that, there’s probably combinations I could come up with where you had two of the three that had nothing to do with PCOS. If you take out the high androgen, if you’ve just got someone who’s got irregular periods and cysts or the immature follicles on their ovaries, hypothalamic amenorrhea would come as part of that. Someone who is in their teenage years could be falling in that category as well.
Julie Duffy Dillon: Yeah, there’s a catch with that. When people are diagnosing it—I don’t diagnose since I’m a dietitian, but I can strongly encourage a doctor to diagnose someone. That’s about as far as I can go. [laughs] But it’s not encouraged to diagnose PCOS. It’s kind of wishy-washy until a person’s eight years post starting their period. Especially using a different guideline that they’re trying to develop right now because of that, because there are some irregular periods that are just common and have nothing to do with having PCOS.
But yeah, hypothalamic amenorrhea I think is such an important part of this conversation because so many people are not asked how they’re eating when they get that blood level of testosterone taken. The doctor’s like, “Oh, you’re not having a period and you have high testosterone. You must have PCOS,” but if they just said, “How are you eating while you’re training for this triathlon?” or whatever you’re doing, then they would be like, “Oh, you’re not eating enough.”
For some people I’ve worked with, that’s what has ended up happening. Malnutrition has been the basis that’s caused the high testosterone. As the person eats enough, then it normalizes and goes away. So yeah, I feel like one of the best questions as healthcare providers we can ask people is, “How’s your eating?” It’s a simple question.
Chris Sandel: You mentioned the fact that it’s got to be eight years post someone first getting their period. Is that a new recommendation? Because I’ve had lots of clients who were diagnosed in their teenage years who, as I said, went on to then develop a fairly disordered relationship with food, and in the end they don’t think they have PCOS anymore.
Julie Duffy Dillon: Right. The eight year thing was based on using the AMH hormone. I can’t remember. Anti…
Chris Sandel: Müllerian?
Julie Duffy Dillon: Yes, thank you. Anti-Müllerian Hormone. It’s looking at that research that they were saying post eight years. It’s one of those things that’s still murky and gray. I don’t know how long people have been talking about that, honestly, but reading through the new evidence-based guidelines from 2018, that was one of the things that was talked about in there. That was newer to me reading it, but I don’t know. It’s probably one of those things that was not newer to some other people, but it was newer to me.
And it makes sense, right? It doesn’t mean you can’t get diagnosed with it, but it just means we need to wait and see. Or we need to figure out a better way to diagnose people.
Chris Sandel: In terms of the cysts or the immature follicles that haven’t developed properly yet, is there an amount? I seem to remember something that for it to be PCOS, there has to be more than a certain number on one of the ovaries or each of the ovaries to differentiate between if this is fairly normal or if it’s getting to a more extreme end of the spectrum.
Julie Duffy Dillon: I don’t know. I always hear it called the pearl-like “cysts,” those immature follicles. I don’t know how many it has to be.
Chris Sandel: I’m trying to remember where I read that. It might have been with Nicola Rinaldi’s work. I know she’s done a lot on HA and differentiating between the two of them. I have a feeling she referenced something along those lines.
Julie Duffy Dillon: Yeah, I love her work.
00:45:55
Chris Sandel: In terms of what causes PCOS—I imagine your answer is going to be “we don’t know,” but what do we know about the causes?
Julie Duffy Dillon: What we do know is that weight does not cause it. We also know that how a person eats doesn’t cause it. I just want to make sure that any listener that experiences PCOS knows that they are not to blame for it.
So far, there’s a genetic connection. It’s definitely passed down through families. There’s probably some kind of environmental part as well to it, just like any other kind of disease out there. Even though PCOS is not considered a disease, more of a syndrome, still, it has this mix of genetics and environment with it. But yeah, nobody caused it. They didn’t do anything to cause it. For right now, that’s basically all we know.
Chris Sandel: When you say genetics, where they’ve been able to isolate certain genes—I know you can do genetic testing for different things—to that level? Or no?
Julie Duffy Dillon: I don’t think they know it on that level yet. When I work with people—this is something that’s more of practice-based evidence, but most people I work with find it’s been passed down through their father’s side of the family. But you’ll see other research that talks more about the maternal side. It definitely has some kind of genetic connection, but I don’t know, and I’m definitely not a genetic expert.
Chris Sandel: In terms of environmental factors, is there any specific ones that can be pointed towards? Like “this tends to make it more likely”?
Julie Duffy Dillon: That’s something that I would love to see more research on. The person who did a lot of my training, Monika Woolsey, often talked about how the agriculture change that shifted in the ’50s and ’60s with changing how we feed our livestock was something that changed the ratio of Omega-3 to Omega-6 in our food. She often talked about that and how it may have an effect on the amount of people experiencing PCOS.
00:48:15
I think also, there’s more people in the research world connecting trauma and intergenerational trauma and the PCOS experience. Many people with PCOS, there’s a lot of trauma in their history, whether it’s racial trauma, marginalization that has been passed down from centuries, and how that may also have a connection to the environmental side of it. I’m really interested to see that research.
That’s the one I’m really looking the most for, the trauma and the PCOS experience, whether a person gets it or not. That’s something that is nothing that we cause; it’s just something that happens, but yet explains why some people have had it passed down.
Chris Sandel: I’ve done a podcast before on the Adverse Childhood Experience study, and I’m trying to remember, but I can’t, if they looked at the incidence of polycystic ovary syndrome and then the various numbers of adverse experiences and how that would have an impact on it.
Julie Duffy Dillon: As we’re talking, I notice that there’s someone mowing the grass right next to me. [laughs] It just got really loud. Okay, hopefully they’re done. There’s only one little strip there.
But anyway, I think about how stress is related to blood sugar and insulin levels, and that would be really interesting to sit with and sift through and see if we can connect some dots.
Chris Sandel: Definitely.
00:50:00
What is the amount of people who are dealing with PCOS? What percentage of the population?
Julie Duffy Dillon: It depends on where you’re looking, what the numbers are, but you’ll see anywhere between 1 in 5 and 1 in 10 of those assigned female at birth experience PCOS. Not all of them have been diagnosed, but that’s the estimation at this point. The most common I’ll see is 1 in 7 of those assigned female at birth experience PCOS.
Chris Sandel: But even 1 in 10, that is a lot of people.
Julie Duffy Dillon: For sure, it’s a lot. For as little as we know about it, it’s kind of ridiculous.
Chris Sandel: Definitely. You talked about the fact that maybe the changes in agriculture from the ’50s or whatever—so are there more cases of it? And if that is the case, is it just we’re getting better at diagnosing it via ruling things out? Or it is getting more common?
Julie Duffy Dillon: I don’t know the answer to that. It’s one of those things that I think is related to other conditions that we’re like “wow, why are we seeing more of this?” and really it’s probably because we’re diagnosing it better. I don’t have a scientific answer for that. I probably would just be guessing.
Chris Sandel: Are there other conditions that are common alongside PCOS? I know you talked about mental health issues or issues around metabolic syndrome type stuff, but are there other diseases that seem to come along quite commonly?
Julie Duffy Dillon: Yes. What most people will think about is diabetes. 40% of people over the age of 40 with PCOS are experiencing either prediabetes or diabetes. What we’ll also see is high blood pressure, high cholesterol, and of course infertility.
Something else that is super common along with that is—one that I just lost my train of thought with. Let’s see, what one was it? Oh my goodness, I had my first brain fart. Excuse me, Chris. [laughs] It’ll come back probably when we’re talking about something else.
Chris Sandel: Perfect, that’s fine. Something else you talked about before was in terms of it needs to be eight years post someone’s first period. Is there a way that you could diagnose PCOS before someone has started to get their period? Or even at the other end of the spectrum, when someone’s gone into menopause?
Julie Duffy Dillon: Technically no, if you use the criteria that we were talking about earlier. That’s one of the things that I think is really unfortunate about it—one of the many—is that especially people post-menopause technically cannot get diagnosed with it. Some people think that once they get a hysterectomy and they’ve got the ovaries removed too, “I don’t have PCOS anymore because I don’t have ovaries.” Well, no, because it doesn’t start there. It’s something that a person will have for their whole life.
And it’s chronic. It is like diabetes in that way. Chronic conditions are something that gets worse and worse. Even if someone does whatever exactly is supposed to be right—we don’t even know what that is, and we’re not robots—but if even if someone did, it still gets worse because it’s a chronic condition. As people are living with it later, post-menopause, the metabolic and psychological consequences are still there.
The AMH levels, that’s where that could be really helpful because that is something that researchers could use to diagnose it pre-period and post-menopause. That’s how they actually could get diagnosed early on.
Chris Sandel: I don’t know a huge amount about AMH, but I know for clients with HA that I work with, there’s been times when they are in the thick of their over-exercising and undereating. They went and had their AMH checked and they were told, “You just have low ovarian reserve. It means you’re just entering early menopause.” Then once they started eating more or taking the time off exercise and their body got back to being able to support itself properly, their AMH levels were in the range they should be.
Julie Duffy Dillon: That’s so interesting.
Chris Sandel: So I wonder how much other variables could then impact on that as well.
Julie Duffy Dillon: Yeah. I don’t know as much about AMH. I don’t know how it’s affected by how the person’s eating and moving their body and how stressed they are. When I say stressed, I mean like marginalization, not like “you need to go meditate.” But I don’t know how AMH is related in that way and how that would be seen in PCOS diagnosis. It sounds like it’s not something that is the same no matter what. It sounds like it can vary.
00:55:30
Chris Sandel: You alluded to before that there are different types of PCOS. Can you talk a bit about that?
Julie Duffy Dillon: Yeah. I actually have a really good blog post—I had a nutrition grad student that worked with me for a couple years, and she is someone who has PCOS. Her name’s Kimmie Singh. She wrote this really wonderful blog post on the different PCOS types, and I’m going to pull it up right now so I can give you the actual…
Chris Sandel: And she’s the person you do the podcast with as well, right?
Julie Duffy Dillon: Yeah. There’s four or five different types of PCOS that have been discussed. I’m looking for the actual website right now, the link. I don’t have it. I may find it as we’re talking.
Anyway, what the different types will look like is some people with PCOS have the period issues, and then they may not have any issues with hair on their face. Or there may be someone that has totally normal fertility—when I say normal, they’re ovulating as expected—yet they have lots of insulin resistance. There’s different types.
For a long time, we just thought people with PCOS all had the cysts on the ovaries and high insulin levels and they were losing hair on their head, but really when it comes down to it, that’s just one type. There’s many different combinations based on those three criteria, like you said before.
I think it’s important to keep in mind that not everyone looks the same. You definitely can’t diagnose it just by looking at someone. You may have some clinical clues by looking at someone, like if they’re losing hair on their head or something like that, but really besides that, we need to make sure that we actually are doing an assessment including “How are you eating?” so we can figure that out.
If you’re wanting to know more about the different types, if you go to JulieDillonRD.com/PCOStypes, it’ll take you to it. What Kimmie did, because she’s the one that wrote this blog post for me, is she made a chart of the different types.
I think it’s important because there’s a lot of shame that comes with PCOS. It’s an ovary thing, it’s a period thing, it’s a woman thing, so if a person feels weird already and then they’re like “I don’t have the classic symptoms”—I’ve had some people say, “My doctor said since I have blonde hair, I can’t have PCOS.” I’m like, oh jeez, first of all, how do they know if you dye it or not? That to me was hilarious that we are not a species that are—I don’t know, it’s not like we have fences around each other. If it’s more in one population than the other, we all are hanging out.
Anyway, we all can look different. Check out that blog post, because I feel like it’s a really helpful one with all the different types.
Chris Sandel: Would it mean that depending on which type, you could approach it differently in terms of how you would deal with it?
Julie Duffy Dillon: What I think about that is we know so little about PCOS that we don’t even have—I know we have these evidence-based guidelines that I’ve referenced a few times, and it’s 200-300 pages, so it’s definitely long. But when it comes down to it, especially with food and movement, we really don’t know, long-term, the way to treat it. We don’t have enough research to have some medications that are intended for PCOS. There’s lots of off-label uses of medications, but we don’t really have that much information.
00:59:30
Using this kind of chart is helpful because if you can place where you are on it, you can know, “I’m someone that doesn’t really have the higher androgens.” Birth control is sometimes what people will take to help lower their testosterone levels. Inositol is a supplement that a lot of people take to help lower their testosterone levels. If someone can say “I don’t have the higher androgens, so I’m going to wait on that,” I think it can be helpful. That’s more of a didactic thing.
But what I really think is important for people with PCOS to know is that you are an individual, and we don’t have enough information to give you exact tools. So just know there are different types, and you and your body need to decide what you’re willing to do and what works for you. There should be a hard stop on that. Nobody else—you get to decide what you’re going to do and what choices you’re going to make, and what works for you and what doesn’t. If it makes you feel like it’s torture, then I would not do that. I’m mostly speaking about the diets that people are told to do. People say, “Oh my gosh, it feels like hell,” and I’m like, “Yeah, it probably does. So don’t do it anymore if it feels so bad. You and your body get to decide.”
I have a feeling many years from now, they’re going to have more specific types of PCOS and different ways to treat different types of them, but we just don’t have that information yet. Using your own body as the way to help you decide what treatment I think is the best route.
Chris Sandel: Definitely. What you described there sounds like a combination between motivational interviewing in terms of getting the client to work out what they want to do, as well as intuitive eating in terms of listening to their body to figure out what option they want to be taking.
Julie Duffy Dillon: Yeah.
01:01:25
Chris Sandel: You mentioned there about misdiagnosis or “you can’t possibly have it because you’ve got blonde hair.” My experience with clients has been misdiagnosis in terms of people told they do have it when it really turns out that they don’t. But I wonder how often it’s the other way round, where people are told “Oh no, everything’s fine,” or “We really don’t know what’s going on,” when actually it would be helpful for them to be given the diagnosis of PCOS.
Julie Duffy Dillon: The misdiagnosis definitely happens. That’s another thing that Christy Harrison and I were talking about, because she was misdiagnosed with it at some point. But the most common experience that I see with my clients is that they are either not told that they have it, but they do—doctors will know that they have it, but they just don’t give them that information because they’re like “well, what are they going to do with it?”—or they just don’t really want to pursue looking into it.
For a lot of people that I work with, they’ll come to see me because they have this complicated relationship with food, and they will be basically weight-suppressing themselves. They’re going through starvation, maybe having a chaotic relationship where there’s some binging—or what they would call binging but, again, I just call staying alive. So there’s some weight suppressing that’s going on because there’s not enough total amount of energy going into their body, so their body looks smaller. So sometimes doctors will say, “No, you don’t weigh enough to have it.”
My big thing is, seriously, to get testosterone drawn, how much does that really cost? In the U.S. that’s a really inexpensive test. I’m like, can we just get that? I know that’s not the end-all, be-all, but it could really be helpful just to have some way to have something concrete to hold onto.
This is where my feminist ideals and foundation come through. I get a sense that there are some people who just don’t want to tell people that they have this condition because they’re afraid of how they’re going to react to it.
This is actually something that was talked about in an editorial column two or three years ago. I want to say it was an Australian journal, so maybe you know more about it. It was an editorial on “maybe we’re overdiagnosing PCOS, and why should we even tell people when they have it if we’re not going to do anything about it?” That’s outrageous. I think doctors—and healthcare providers; I don’t want to keep slamming doctors—don’t always know what to do, but that doesn’t mean that a person shouldn’t know about it. It’s almost like, for those of us who were socialized as women, “we’re just so weak, we can’t handle this.” [laughs] No, we can handle it. The truth is important.
So I think there’s more people who are needing the diagnosis, and there are people who are undiagnosed. If people get the diagnosis earlier, there’s so much that they can do. Especially from my point of view with specializing in people’s food behavior. If someone says “Oh, this is why I have cravings” or “Oh, this is why my body’s changing. Let me be kind to my body instead of fighting it. My body’s trying to tell me something,” I think it could help not only with just preventing an eating disorder, but body image, poor health, weight cycling, and then how you’re raising your family, how you’re teaching your children about eating. It ends up being this really big, important thing to know about your body.
Chris Sandel: Yeah. Even if you can’t cure PCOS, there’s a lot that you can do if someone gives you that information. I think in the same way, I work a lot with hypothalamic amenorrhea and so often women are told, “We don’t know why this is happening. It’s not really important. Just go on the pill and come back to us when you want to have a baby.” But there are some real repercussions to this going on and not doing anything about it.
Julie Duffy Dillon: Right. There is a parallel there, that’s true. A lot of people with PCOS tell me that they’re just given birth control. “This will make you have a period.” There’s some things with birth control, too. Some research is pointing that that may not be the best choice for PCOS. There’s some connection with higher insulin levels with long-term use. I’m like, jeez, for a lot of people that’s a big part of their experience, this higher circulating insulin.
So that could be making it worse. And it’s not fixing anything. It’s helping to lower testosterone, and for some people, it’s providing birth control, which is important for them, or making periods easier to live with, but besides that, it’s not fixing it.
01:06:40
Chris Sandel: You said something before about doctors saying “You’re too thin; you couldn’t possibly have PCOS” or “You don’t weigh enough; you couldn’t possibly have PCOS.” I think within the culture, maybe there’s this idea that it skews that way, that people with PCOS are typically heavier or high weight. Is that true within the research?
Julie Duffy Dillon: It’s funny because when we look through those evidence-based guidelines that were published in 2018, there’s so much talk on preventing people from going to a higher weight, but yet they even state in there that the percentage of people with PCOS who are higher weight is the same as the general population. So it’s not any different, which I think is funny. But it’s definitely what I see in my practice. Bodies are all different, and people with PCOS all have different bodies too.
If someone has what they would call the classic PCOS type, where there’s high androgens and the metabolic consequences with PCOS, when people have the high circulating insulin, and if it’s been going on for a long time, having more fat in the stomach area is a really common experience. But it’s not what every person has. Everyone’s body is different.
01:08:10
Chris Sandel: What are the conventional recommendations for PCOS? I know we’ve probably touched on some of them, but just as a starting point, what are most people told that they should do?
Julie Duffy Dillon: The primary recommendation through all those guidelines that have been recently published, and if you look at any general body, the American Society of Reproductive Medicine or OB/GYNs, the general recommendation is still weight loss/lifestyle management, whatever somebody wants to call it, but basically the same thing. So either lose weight or don’t gain weight is what is recommended, along with restricting carbohydrates and/or sugar. And then, of course, movement or exercise with that as well.
There’s a big push for “lifestyle modification.” They base that on this wonderful—I’m being so sarcastic—wonderful long-term research on PCOS. This “long-term” research is 12 weeks long and shows that starvation can change insulin levels. Well yeah, of course, if we’re not eating it’s going to cause our insulin levels to go down. But then long-term, we know from general research outside of PCOS that it just makes insulin higher.
Anyway, the general recommendation is to lose weight or make sure you don’t gain weight.
I had the pleasure of interviewing Caroline Dooner. She’s someone that experiences PCOS, and she wrote a book. I don’t know if—
Chris Sandel: You can swear. [laughs] I know the name of the book.
Julie Duffy Dillon: Okay, so her book is The F*ck it Diet, which is a really wonderful book. She’s not a dietitian or a nutritionist, she’s not a clinician; she’s someone who has a lived experience. And it’s really good. It has a really great review of the literature. I like it better than most nutrition ones right now. It’s kind of my favorite one.
Anyway, I interviewed her on the PCOS and Food Peace Podcast last year with Kimmie Singh, and the thing she told me was that when she got diagnosed with PCOS, she was already starting to experiment with her eating disorder, but it wasn’t totally set. But once she was told she had PCOS, she was told she had to diet. Basically like, “You have to diet now. You cannot lose control of this, and you can never eat too many of whatever.” She said that was it. That was what clicked it all into place, and the eating disorder really had this foundation because she had to now.
It’s really unfortunate because even in the guidelines that we read, they talk about how we really don’t have evidence that shows any certain diet is better than others, so kind of recommend any of them is basically what it says. [laughs] Like, “hey, none of them really have any evidence working long-term, so just throw out any one you want” instead of “wait, maybe we shouldn’t recommend that.”
Chris Sandel: So throw out any one you want with the intention of trying to lose weight?
Julie Duffy Dillon: Right, or just lifestyle management kind of stuff, whether it’s preventing diabetes or preventing weight gain or lowering insulin levels. There’s a mention in there of “we don’t have any long-term research that any diet works long-term, so just choose whichever one you want.”
Chris Sandel: Okay, because one of my questions when thinking about this was if it’s useful to get someone to go lower carb or reduce carbohydrates but still keep calories at the level that they need to be at, i.e. bumping up your protein or bumping up your fat, but keeping carbohydrates low. Is there any validity to even that?
Julie Duffy Dillon: There are some 6-week and 12-week studies in PCOS that show that it is helpful. They show that it improves ovulation and egg quality. But past the 12-week mark, I haven’t seen any yet with PCOS. What I do know in the long-term research for the general population is that that doesn’t work.
And when I’m sitting with a person, again, we’re doing person-centered care. A person will tell me, “I tried that, but it felt like torture.” I think that’s a really important part, especially for those of us who don’t have PCOS, to keep in mind. Having a food craving when we don’t have PCOS is like “I have a hankering for something sweet. I’m going to go have something sweet, a few bites or a candy bar or something.” But what people with PCOS have taught me about their cravings is they may use the word “craving,” but I feel like it’s so much deeper. It’s more primal. It’s like “I have to eat this right now or I’m going to die.” If you’re like “Okay, but you can’t eat that”—just imagine, we need water and you’re dying of thirst, but someone’s like “You can’t have any more water.” You’re dying of thirst. How would that feel? So of course it’s not sustainable, because it’s a primal need that’s not being met.
So to me, until there’s some evidence that there’s a way of restricting something that actually helps long-term for humans, then it’s just not something I’m going to entertain to help my clients with.
01:13:35
I think removing carbs and sugar for PCOS, again, maybe in the short-term research it does something, but I really feel like it’s putting the cart before the horse. It’s not something that’s really going to go to help healing what their body is missing out on and what’s so depleted.
I have a 12-step system that I take people through when I work with them and in my online course, and I go through so many things, like let’s make sure you’re eating enough first. Let’s stop weighing yourself. I encourage people to experiment with eating more protein—not taking carbs away, but just experimenting with eating more protein—and then adding some supplements.
I think it’s either Step 8 or 9 we talk about carbohydrates, so it’s way near the end. When we talk about carbohydrates, by that point for most people, it’s not even something that needs to be sorted out. Once the body has found a tool that helps lower insulin levels, if that’s something they’re experiencing with their PCOS, once they’re lowering insulin levels and their body is eating enough food and getting repleted in that area, then the carb thing doesn’t seem to matter.
And when I say that, it may mean it doesn’t really matter how much they have, or their food cravings—some people may end up eating less carbs, but they just don’t want them. They have permission for them—I hope they do, because that’s a big part of how I’m doing this. It may look like some of the recommendations, but it’s coming from a different place. It’s like “It doesn’t even sound good. I don’t want it.”
Chris Sandel: It’s interesting, because I work a lot with clients who have gone through the real decades of dieting and have tried lots of different things, and sometimes things work for quite a while before they get really bad. They go low carb and they become very evangelical about it, and it works for six months or it works for a year. It could work for even longer than that, and then everything starts to really become a problem.
As you’re describing those primal cravings that people get with PCOS, maybe the people who do well on PCOS with a lower carb, at least in the beginning, are the people who skew more towards the non-metabolic issues with PCOS.
Julie Duffy Dillon: Yeah, or it’s their first few diets.
Chris Sandel: Yeah, you’ve got the honeymoon part.
Julie Duffy Dillon: Yeah. A lot of people with an eating disorder or disordered eating in their history that I work with can do it for the first few times, a six-month stretch. But then after the fifth or tenth or twentieth diet, they don’t last as long because the body is too tired and the cravings are so much more intense.
01:16:30
Chris Sandel: I know you said you go through a 12-step program with people.
Julie Duffy Dillon: Yeah, that sounds like a good word for it.
Chris Sandel: Can we just touch on some of those different things? What would be some recommendations as part of going through it? We can dig into a couple in a little bit of detail.
Julie Duffy Dillon: The first two have to do with moving away from dieting and checking weight. Not everyone I work with is excited about that. I am upfront with people where I say, “Hey, I don’t put people on diets” or “I don’t support diets” or whatever, but I also believe in body autonomy. A person gets to decide what they’re going to do.
This way of looking at PCOS, I ask people to give their body three to six months without the pursuit of weight loss just to see how they feel. I’m really rooting for them to not go on a diet, but I also appreciate people are getting marginalized every day because of their size, so they get to decide what they’re going to do. But from this approach, making sure a person’s eating enough—that really means moving away from dieting and not weighing yourself anymore.
In the next couple steps, I talk about using a couple supplements that I find are really helpful for people with PCOS. One is repleting Omega-3 stores in the body. There’s a pro-inflammatory state that is being found in research right now with PCOS. It’s this chronic pro-inflammatory state that may be behind some of the insulin issues and other hormonal abnormalities and also leading a person to just feel like crap, just feeling so tired. So many people tell me, “I have no energy whatsoever.” Part of it is because of the weight cycling. It’s depleted specifically the DHA stores in their body. So getting some supplemental DHA and Omega-3.
Inositol is another supplement that I recommend. I briefly mentioned it earlier. I always feel like I need to say I’m not typically someone that recommends a lot of supplements. I often roll my eyes when I talk about recommending supplements because I can’t believe I’m recommending them. I was in college when the FDA in the U.S. changed the regulations to not regulate supplements, so I remember it being a really big deal as a dietitian in training to not recommend supplements because they weren’t being regulated.
And the amount of Omega-3 that a person with PCOS needs just to recover from weight cycling and dieting and just the PCOS experience is so great that they need it from a supplement.
Then this inositol thing—inositols are a part of B vitamins. They’re secondary messengers, and they’re really interesting. For anybody listening, or for you, Chris, if you’re really into following something in research, I feel like inositol research is one to watch with PCOS because it is something that may lead to not necessarily a cure, but just some really big deal with it. Right now what researchers are thinking is that people with PCOS either have a defect or a deficiency in these inositols.
We have nine different types of inositols in our body, and there’s two different ones that researchers have been able to connect to PCOS. If a listener is like, “this is so confusing,” I’m here with you. I always say I loved biochemistry so much I took it twice. [laughs] It’s definitely not something that was ever my super—it takes me a long time to really soak in biochemistry. I think it’s important. Kimmie, my nutrition grad student that worked with me, wrote a really great research-based article on inositol. You can get it on my website too.
But basically, finding a way to supplement with inositol is another thing that’s a part of those first few steps. You can get some that are naturally occurring in plant-based foods, fruits, vegetables, beans. Those are all things that have naturally occurring inositol. But a person still needs more than they’re going to be able to get.
Inositol has a really cool connection to insulin levels, so by increasing inositol, our clients with PCOS who are feeling so fatigued and having lots of those cravings will tell me within about a week of using inositol, many people—not everyone, but many people can tell within a week. They’re like, “Oh my gosh, I feel so much better. I can tell already.” It’s recommended to try it for 90 days before you decide if it works for you or not because it may take that long to affect ovulation.
But that’s a really exciting one. I do think that some pharmaceutical company is going to come in and make a pharmaceutical-grade version in the U.S., so it’ll be super expensive eventually. But for right now it’s still online and you can get it on your own in the U.S., and actually anywhere in the world.
Chris Sandel: With the research around that, is there more because it then is applicable not just to PCOS, but also to diabetes and metabolic syndrome?
Julie Duffy Dillon: Yeah. It’s something that I recommend to people who have any kind of issue with insulin levels, whether it’s diabetes or just their insulin levels are high. It’s something that is suggested in research that it can be helpful. Also people with anxiety. There’s some research that it can help with that as well. Super exciting for sure.
Chris Sandel: Just out of interest, all your years of doing that work around diabetes, has that been helpful now with PCOS because of some level of overlap?
Julie Duffy Dillon: Yeah. I did so many pump trainings and new diabetes trainings because I was the diabetes educator for this 1,000-bed hospital. If any kid came in with new diabetes, I came in whether it was a Saturday or a Tuesday. I was going to be there talking to them about having diabetes. So I got really good at being able to explain “this is what insulin does.” It’s been really helpful.
Also, working with diabetes from a more weight-centric approach, I got to know both sides of it. I can appreciate why people are recommending a weight-centric approach with diabetes, and I know it doesn’t work. So it’s definitely helped inform.
One thing, as you probably can appreciate, is since I haven’t been doing it for a while intensely, I’m not up-to-date on a lot of diabetes medications. So when my clients with PCOS, maybe they don’t tolerate Metformin, which is a medication a lot of people with PCOS end up getting put on—if they don’t tolerate it, they may need to find another way to help treat some of their symptoms. I just don’t even know what medications are out there for diabetes anymore. So those are ones I often will need to refer out because I just don’t have that in my toolbox anymore. Those medications change so much.
01:24:00
Chris Sandel: You mentioned Omega-3’s. My recommendation—and this isn’t specifically around PCOS—I don’t know what the quantities are, but trying to do that from a food perspective, A) because I’m not the biggest fan of supplements, but B) just because of knowing how fragile polyunsaturated oils are, I would much prefer it to be in a food form if possible. I’ve seen certain research where they test a whole load of supplements, and even the ones that are meant to be the highest standard of care turn out to be rancid or have impurities, etc. I just wanted to get your thoughts on that.
Julie Duffy Dillon: I know. That’s why I don’t like it either, because there’s no way to really know. The amount of DHA that a person with PCOS needs is about 500 to 1,000 mg a day. That’s the amount that I recommend for them to supplement. That’s really hard to get through food. I mean, a person can try, but that would be really hard.
So I think we need to just keep staying on the best ways—I want to keep knowing what kind of supplements would be the best to recommend. I only recommend people to use ones that are third-party tested, so they actually know they’re getting the amount that’s in there.
The rancid issue, I know for the last few years as dietitians we’ve been talking about that, and I feel like that’s why it’s important to keep reading and trying to figure out which ones are going to be the best. There’s always going to be some kind of thing that makes it imperfect. We just have to do the best we can with what we’ve got.
Sometimes people say, “I can get the Equate brand at Walmart for this really good price right now. Is it okay if I get it?” I’m like, “Yes, it’s okay if you get it. Let’s just try that and see what happens.” I’m really flexible in that way. To me, if that’s all you have and it’s that or nothing, let’s do it.
Especially for the fish oil supplement or the Omega-3, if someone does the vegan version. As long as it’s labeled how much DHA is in there, then I’ll be okay with them trying it. It is a risk, though, if you don’t know for sure if it actually has fish oil in there or if it’s gone rancid like you said.
01:26:30
Chris Sandel: There are a couple other areas I’m thinking of, like sleep. How important is sleep in PCOS? What are your recommendations around that?
Julie Duffy Dillon: Sleep is definitely in one of those 12 steps. I’ve seen estimations of 75% of people with PCOS have a sleep disorder, so it’s recommended on a regular basis to get a sleep study. I often tell my clients at least every five years, get one. There are some people who say every other year, every third year, which seems like a lot. But they’re easier to do now. People don’t even have to go to a sleep study place anymore; they can just take it home and do the sleep study at their own house. So it’s definitely something that’s really important.
What we know with sleep is it is coordinated by circadian rhythms that are run by hormones. Because hormones are involved, it can be involved with PCOS, especially the higher insulin levels get, because insulin is part of that sequence. If someone has high circulating insulin, it’s going to affect their sleep, and then having poor sleep is going to make insulin higher. It’s this snowball effect.
When I talk to sleep experts or people with PCOS, what I’m seeing more and more is people with PCOS need to protect their sleep as much as they can. My kids are older now, but as someone who at one point had infants, that’s impossible to do when you have a baby who’s not sleeping. So do what you can. But I see some people say that people with PCOS need 9 hours of sleep a night instead of the 7 or 8 that we see for people without PCOS. They probably need 9.
Also, the screens and blue lights, watching Netflix before bed on your laptop, that may disrupt people with PCOS even more. So try to have good sleep hygiene. An hour or two before bed, just reading or doing something that doesn’t involve a screen can help with that process.
But getting a sleep study, for so many people I work with, has been a huge positive impact on their health, whether they have a device that helps them breathe better—they say “Oh my gosh, I didn’t know how tired I was” because they were tired for so long.” And cravings change just from that, because insulin levels come down. So yeah. sleep is definitely a big one.
01:29:00
One that I haven’t really talked that much about—I’m totally changing the subject, but it’s something that I think is important. I talked a little bit about protein when we were talking about carbs, but the first food thing that I often will talk to people about is not carbs, like I said; it is protein. Something I always say is that people with PCOS probably just need more protein. We don’t know exactly, we don’t know if it’s everybody, but they probably do. So experimenting with that before taking anything away, just adding more protein to see if it does anything. For a lot of people, that’s a big deal. That’s something that has allowed them to feel like they have more what they would call “normal” amounts of energy. I wanted to throw that in there before I forgot, but that’s another thing. That’s one of the first few steps too.
Chris Sandel: I would agree with that, for people even outside of PCOS. When I look through people’s food logs and what they’re eating, protein is probably one of the things that comes to mind first. Especially because if you’re out and about, it’s not as easy to come by. You can normally easy pick up some fruit, you can normally easy pick up a sandwich. To get protein typically takes a little bit more forethought. It just doesn’t appear as much in what people are doing unless they’ve gone down the paleo route.
But I think it does make a really big difference in terms of satiation, in terms of having even energy, having energy going on for a long amount of time. So yeah, I want to second that comment.
Julie Duffy Dillon: Cool.
Chris Sandel: With the sleep side of things, with the sleep studies, is it just looking for sleep apnea? Or are there other sleep disorders that get picked up on? I’ve had clients, like you have, who did a sleep study, got diagnosed with sleep apnea, and are now using a CPAP machine and have noticed how much of a benefit it is for them—having more energy, changing their food cravings, etc. But I just wanted to know, are there other disorders?
Julie Duffy Dillon: There are other disorders for sure, because sleep apnea is not the only one. There seems to be different types. I’m definitely not a sleep expert, but there are other ones besides sleep apnea that are found with PCOS.
Sleep is really complex. It’s a really awesome thing, too, but it’s a complex experience. So yeah, there’s other ones. Sometimes people will say, “I know I don’t have sleep apnea,” but it’s still good to get the sleep study done because there could be another one that you’re experiencing.
01:31:40
Chris Sandel: What about stress? I know stress is a very general, big word, but how do you think about stress and PCOS, and what are some of the things that people can be doing to mitigate that or deal with it?
Julie Duffy Dillon: I think it’s important for people with PCOS to consider the stress they can control and what they can’t. I say it like that because there’s some stress we just can’t control, and it’s important to just name it as a stress. Like “I’m stressed because of my size.” It’s important to name it. Again, that comes from a feminist approach of naming something so then it does bring down some of the stress level—but also, it’s not your fault, but it’s still there, and it’s important to give yourself space and rest.
One of my favorite Instagram accounts on the planet is called the Nap Ministry. I don’t know if you’ve ever seen it.
Chris Sandel: I have not.
Julie Duffy Dillon: It is amazing. It talks a lot about people who are marginalized or oppressed, how in order to fight things like white supremacy and the patriarchy, they need to rest. There needs to be less of the hustle culture, there needs to be less of the grind and more rest. I feel like PCOS can be a part of that for so many people. Many people with PCOS are living in marginalized bodies in many different ways, so naming how they are being stressed in their life and then allowing themselves as much rest as they can.
Then for the other types of stress, the things that probably are more conventionally talked about in maybe wellness culture and things like that, there’s certainly research on yoga and meditation as it relates to helping with stress levels. Having the chronic pro-inflammatory state that we see with PCOS, finding ways to help calm the body however you can, in any way you can, is certainly something that will be able to help metabolically. Again, there’s only so much you can control in that way. But if you’re able to set up space in your day to be able to do something that’s stress-relieving, that’s something that’s certainly going to help the management of it.
I will say, too, people talk a lot about exercise with PCOS, but I also feel like meditation and rest are also a way of moving your body. It’s resting your body. So I often will talk about that with my clients. “When are you resting to help replete, to help with the stress management?”
01:34:15
Chris Sandel: I know you mentioned meditation there. I’ve started using guided meditations with clients to help with digestive issues. I know there’s some pretty decent research on how helpful that can be, and I saw as part of your course, you do meditations as well. Is it purely from a relaxation standpoint, or it’s also changing beliefs as part of that content?
Julie Duffy Dillon: I use the meditations in my course in urgent times. If a person’s in a place where they really want to check their weight or they’re having a really intense craving, they’re experiencing something that feels urgent, and then they feel paralyzed because of that. I use the meditations as almost a guide to help them decide what they want to do next. My intention is I want them to feel at home in their body, so then they can inform their decision based on what they value and what they want to do. So that’s what those meditations are for.
I love using guided meditations for stress management for myself, and I encourage my clients to experiment with that. I do work with a number of people who have a trauma history. Meditation and trauma history for many people just don’t mix. It’s just too threatening, or it’s something that touches something that I think is important for them to not touch right now. Part of my trauma-informed care also is like “hey, meditation is not going to work for everybody, and that’s not a judgment; that’s just how we’re all different and also our different lived experiences.”
But yeah, I love Insight Timer. That one is my favorite guided imagery. Or you can do ones that are not guided imagery for meditation.
Chris Sandel: I haven’t come across that, so I will put that one in the show notes.
01:36:15
You touched on exercise or movement there. In terms of movement, do you find that to be beneficial for PCOS clients, or it depends on them and what they find useful?
Julie Duffy Dillon: This is what I think about the movement piece with PCOS. To me, when a person comes into my office or when I’m having—we do monthly Q&A calls with our course. Whenever someone’s like, “Julie, I’m having this weird experience where I’m craving movement. It’s not like I feel pressure to do it, but I’m craving it. I want to move my body, but I don’t know what to do,” that is something I hear really often. It’s a clinical sign to me that this person is probably eating an amount that their body needs to feel at least sustainable. I don’t want to say enough, but it’s probably close, if not enough.
And their insulin levels are coming down. They have found some tools that are working for them, so they’re feeling in their body, and their body’s craving some movement. Let’s figure out what they want. To me, it’s a really wonderful marker. That’s when I take lots of notes. I’m like, okay, they started inositol last month. They were eating protein here. I need to document this for them so they know which tools are working for them.
From there, the movement piece, it’s really important to make sure that a person with PCOS, if they are choosing to move their body an amount that’s more than 20 or 40 minutes—if they’re going to be maybe training for a marathon or something like that—they need to know that they need to make sure they eat enough, because it can make that imbalance again where it’s stressing the body out.
Some people with PCOS are like, “I have to exercise for 2 hours a day” or whatever. Actually, that would be not a good thing in my opinion. Let’s make sure you’re eating enough to support that. But do you actually like working out that long? Certainly, I’ve had some people with PCOS I’ve worked with who are amazing marathon runners, and that’s great. But you just want to make sure you eat enough.
But when it comes down to it, the recommendations for PCOS are not much different than the rest of us. Do what feels good in your body, and having some variety may be helpful. Maybe some that requires strength, some that requires more endurance, but having the variety seems to be the most supported in research.
But it’s really that 20 to 40-minute mark that seems to do something with the insulin piece to help manage blood sugar and insulin levels. So it doesn’t necessarily need to be that long.
And when I say “need,” I have to make sure I reference—for a person with PCOS, exercising may be the worst thing for them where they are right now if their body’s insulin levels are really high and/or they’re not eating enough. So don’t force it. If you feel like “I don’t want to move my body,” that’s a great clinical sign. Trust it. There’s something to that. You can trust it. Let’s figure out what you need, and then when you start to crave movement, that’s when I would encourage you to explore what you want to do.
Chris Sandel: The two things I would add to that is, one, people need to rethink how they think about exercise, which is often why they call it movement. If you’re feeling not great and you think exercise means going to a boot camp, you’re going to be like “No, I can’t do that.” But if it was framed as exercise means going for a walk for 20 minutes, suddenly you’re like, “Oh, actually, I could do that. I didn’t think that was exercise, or I wouldn’t think that that would even be useful because I’m not going to be dripping in sweat” or whatever it may be. So I think there’s that.
Then there’s the other one: what sounds like fun to you, even if you don’t think of it as “this is going to make me lose weight” or “this is going to add to my health” or anything like that? What would you do if you found out that it was doing nothing for you?
Julie Duffy Dillon: Yeah, I think you’re speaking to so much that’s important. So many people with PCOS have been pushed to weight suppress or to focus on weight loss, so exercise has been this punishment. “I have to be doing it for so long, I have to be sweating.” There ends up being this really rigid way of experiencing it because they’re just doing what they’re told. That’s awful.
The other thing that’s really important to keep in mind with PCOS is most people with PCOS have high circulating testosterone or some androgen level that’s higher, so a lot of times people with PCOS are pretty good at sports. They’re able to add strength pretty quickly. They’re pretty good athletes. Not everyone would say that, but so many of my clients with PCOS are like, “Yes, I was really good at soccer in high school. I should’ve played ball in college but I thought I was too fat to do it then.” There was something that got people away from it.
That’s really cool to see then, when people start to feel their body enough and figure out tools to help manage the condition when they get back to movement or sports or whatever they really liked, and they’re like “Oh my gosh, I’m still good at it. This is awesome.” I think that’s a really cool part of it. There’s not many perks to having PCOS, but for some people, I guess that’s one of them. They may actually be stronger than other people who were assigned female at birth. It’s kind of neat.
Chris Sandel: The other one I would add with this as well is when people aren’t really up for doing exercise or movement to any degree, the encouragement I always suggest is see if you can still get outside time. I think a lot of the benefits of exercise come down to you’re getting more sunshine, you’re getting more fresh air. So even if it’s walk 20 meters and sit on a bench so that you’re getting good amounts of sunshine during the day time—because if it’s connected to circadian rhythm issues, it’s connected to sleep issues, that’s going to really help from that perspective.
Julie Duffy Dillon: Yeah, totally agree.
01:42:30
Chris Sandel: The final thing I wanted to ask about: I know as part of one of your courses—I think it’s the Practitioner Course—you talk about a PCOS Intuitive Eating scale. I don’t know how much detail this goes into. Are you able to explain that?
Julie Duffy Dillon: Yeah, I would love to. That’s something that I developed with Kimmie Singh a couple years ago. I sat down with her and I said, “This is what my clients with PCOS have been telling me, and this is what I’m picturing in my brain using the intuitive eating scale. I believe and know that people with PCOS can do intuitive eating work too.” I really feel like there was this myth that people with PCOS couldn’t do intuitive eating work because of the cravings and all that, but I’m like, “No, no, no, it can work.” So we had this big whiteboard and we were drawing it all out.
Since Kimmie experiences PCOS, she was able to give me her lived experience. It was such a wonderful gift to be able to have her to help me do this. So using the intuitive eating scale, we basically designed this top and bottom difference.
The bottom of the intuitive eating scale for PCOS is when someone’s PCOS is not being managed well, whether it’s because they’re not given enough tools or they’re living in poverty or they’re being pressured to lose weight or maybe all of those. There’s constant cravings, there’s lots of fatigue. We were thinking of it almost like when you’re in a city and there’s horns honking everywhere and lots of noise and smog, and it’s hard to hear your own thoughts. It’s just really clouded. But your body’s still giving you information.
Then at the top part of the scale, if you can picture that, there’s still some noise; there’s just not as much. The way that a person physically experiences hunger and fullness has some predictability, but it’s still a little bit different than people without PCOS.
That’s what the scale goes into: what are those different physical sensations that people have with hunger and fullness when PCOS is managed well, and then, again, on the bottom, when it’s not in a way that’s working for them? It’s been really neat. What people have been giving me feedback on with it is that it feels like they’re getting validation that they just weren’t given the tools. It’s been helpful for them to learn new words to describe their own hunger and fullness. And it’s definitely in its beta stage, I guess you could say. It’s still early on.
If you’re listening and you experience PCOS and you’re like, “I can’t listen to my body or eat when I’m hungry, stop when I’m full,” something to always keep in mind is intuitive eating is 10 principles, not two. It’s not just hunger and fullness. It’s lots of other things too.
And your body has different cues to let you know when it needs something, and as a clinician, I feel like my job is to help you sort through what those cues are, so then you can file them away to know what they mean. This intuitive eating scale is right now kind of like a stamp of a lot of that collection over time.
Chris Sandel: Cool. It sounds like it’s not just for PCOS. That sounds like it could be very useful for people in lots of different conditions where it just makes things a little foggier or difficult for them to discern.
One of the things I will often do with clients when we’re looking at that hunger and fullness piece is to send them a list of all the different symptoms that could be pointing towards the fact that you’re needing to eat. There’s a couple that are the obvious, like you’ve got a growling stomach or something that they’re going to connect very much with their digestive system.
But the vast majority have got nothing to do with that. It could be cold hands and feet. It could be feeling a little dizzy. It could be change in terms of your vision. It could be irritability, etc. Clients will read through that and then start to pay attention to their experience, and what they typically notice is the point at which they’re getting a growly stomach was like an hour after when they should have eaten. There’s so many other clues that are earlier than that point, and that’s often what I’m helping people with.
Julie Duffy Dillon: I totally agree. Especially with someone who’s been used to dieting their whole life and/or experienced an eating disorder, the hunger/fullness and intuitive eating work will look different until the body has nutritionally rehabilitated to a certain point. Then it becomes more what we would imagine.
01:47:25
Chris Sandel: Definitely. Julie, this has been amazing. We’ve covered a lot. Is there anything I haven’t asked you that you really wanted to go through?
Julie Duffy Dillon: No, I feel like this has been a wonderful overview of PCOS. It’s really great to chat with you and get to know you, and I’m glad that I was able to share this information with your listeners. Thank you.
Chris Sandel: Perfect. Tell people where they can go to find out more. I know we made reference to your podcast and to your courses, but just tell people what is available from you.
Julie Duffy Dillon: The easiest thing is just to go to my website. Everything’s on there. It’s JulieDillonRD.com. From there, if you look on my Services page, you can link to any of the courses I sell or working individually, or there’s also a link for my podcast. You can connect with it there too.
Chris Sandel: Perfect. Thank you again. This has been awesome. I know people are going to get so much out of this. I haven’t really touched PCOS before, and we definitely touched it today.
Julie Duffy Dillon: Awesome. Thank you. I enjoyed our conversation very much.
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