What Happens When PCOS Meets Midlife? with Julie Duffy Dillon

When it comes to understanding PCOS, the bulk of the conversations we have are relevant to women in child-bearing years and almost nothing about what happens in midlife. That’s why I invited Julie Duffy Dillon on the show to help us understand what PCOS might look like as women approach menopause. If you were never diagnosed with PCOS, this episode could help you connect the dots if you’re struggling with extreme fatigue, intense cravings, and trouble sleeping. 

One of the common yet useless recommendations healthcare professionals make for women with PCOS is simply to eat less and move more. But what Julie helps us understand is that this advice does not support the evidence that dieting actually will only make cholesterol, blood sugar, insulin, and worst of all- your mood -worse! So if this is a condition that you can’t control and that you didn’t cause, how can you manage it? 

Julie's advice is to return to the basics of nutritional self-care. Focus on making sure you’re actually eating enough calories and getting a mix of protein, fat, fiber, and carbs. This combination helps keep us satisfied and can reduce the intensity of cravings. We also talk about the undeniable importance of rest given that PCOS causes so much inflammation and that 75% of women with PCOS have sleep struggles. Living with PCOS is not easy, but this conversation will help you see that the answers are in adding more in, not in depriving your body of what it really needs. 

In this episode, you’ll learn: 

• Why cutting out food groups or excessive exercise is not helpful for women with PCOS
• Why PCOS is not a one-size-fits-all condition and requires individualized treatment and care.
• How often women in larger bodies are not diagnosed with PCOS
• How we’ve come to believe the myth that PCOS is something we can cause
• Why prioritizing rest is so key for women with PCOS

You can learn more about Julie, her podcast, and her work at www.julieduffydillon.com and grab her PCOS Power Roadmap at JulieDuffyDillon.com/voice

TRANSCRIPT

Jenn Salib Huber 0:02
Hi and welcome to the midlife feast the podcast for women who are hungry for more in this season of life. I'm your host, Dr. Jenn Celine Huber. Come to my table, listen and learn from me. Trusted guests, experts in women's health and interviews with women just like you. Each episode brings to the table juicy conversations designed to help you feast on midlife. Hey there just before I introduce today's guest, I want to take a minute to tell you that the midlife feast community membership is now open. This is an intuitive eating community for women in any stage of menopause, so perimenopause, menopause, or post menopause, who are looking to explore an intuitive relationship with food so they can feel good in their bodies and stop worrying about food all the time. We'd love to have you and you can check the show notes for more information. Hi there. My guest today is Julie Duffy Dillon. She's a registered dietitian and PCOS expert. And she is one of my kind of favorite anti diet, non diet people in the space because she was actually one of the first people it was her podcast that I found many years ago when I was first starting to explore my own relationship with food personally and professionally. So I wanted to have Julie on to talk a little bit about PCOS and midlife because it's a question that comes up a lot. And we actually don't have a ton of information but we are starting to learn a little bit more. And I think it's so important for everyone who has PCOS or know someone with PCOS to listen to what Julie has to say. Okay, welcome Julie to the midlife feast.

Julie Duffy Dillon 1:38
Hey, Jen, so nice to chat with you. And nice to meet you. Thanks for inviting me on.

Jenn Salib Huber 1:43
I'm so excited as I was saying before the show that your podcast, which has taken on a little bit of like a facelift, I guess or you know, a transformation. Yeah, yeah. Much better word. Your podcast, which the new name is food voice.

Julie Duffy Dillon 2:00
Yeah, find your food voice.

Speaker 1 2:02
Right. Find your food voice was one of the first podcasts that I really kind of tuned into when I was beginning my personal professional non diet journey. And so I'm really, really honored to have you on my podcast.

Julie Duffy Dillon 2:16
I'm so glad that like my podcast was timely. That makes me really happy. Yeah,

Jenn Salib Huber 2:21
definitely. And also timely, because you're really talking about you've always talked about PCOS from a non diet perspective and having those conversations around food that aren't about cutting all the things out. And you know, so many of the conversations that happen around PCOS and so I love that you're bringing PCOS to the midlife table. And that's what we're going to talk about today. So what happened to people who have PCOS when they hit midlife and perimenopause? Well,

Julie Duffy Dillon 2:53
I think the first thing I always like to acknowledge is like, what are people people actually told about what's going to happen? And when I survey people in my community, they're like, basically nothing, or it goes away, which is not true. Because PCOS is not just about the the ovaries. It's actually like this condition that you have your whole life and, you know, PCOS in midlife, can some symptoms worsen? Some get better. And some end up just being like everybody else in midlife. So it's, there's also like a big huge gap in the amount of research that we can actually lean on for this information. So so much of it, I just had been trying to gather from working with people in midlife and beyond with PCOS, like what they've told me about their experiences. But, you know, one thing's for sure is cutting out a food group or trying to exercise you know, even when you feel totally awful. Those are also not going to be helpful in midlife and beyond with PCOS.

Jenn Salib Huber 4:03
So maybe let's back up a little bit. And just for any listeners, who maybe aren't fully familiar, can you tell us what is PCOS first of all?

Julie Duffy Dillon 4:12
So, yes, PCOS is a condition that basically results in this hormonal imbalance, it starts in the brain, and it ends up causing this hormonal imbalance and a set of symptoms and it's very ambiguous like this. People will often have different symptoms and someone else with PCOS and but you know, to get diagnosed with this condition, there's the Rotterdam criteria, which you have to meet two out of the three to get diagnosed and the first one is irregular or absent periods. The second is some kind of signs of high androgens like testosterone, and the third is multiple immature follicles on the ovaries via ultrasound and of course those multiple immature follicles are Um, called CES. That's why the whole term PCOS or polycystic ovarian syndrome, that's why it was called says that they're nonsense. But the thing that's really crappy about those of you in midlife who may be like listening to some PCOS things and thinking that maybe I have this condition and just was never diagnosed, because two of the three of those criteria, you'd actually need to be menstruating or have the ability demonstrate in order to get those criteria met someone who is either before or after that period of life, typically can't even get diagnosed with PCOS. So and we know that it doesn't it started in with menstruation. So

Jenn Salib Huber 5:39
yeah. And so we often think of PCOS as something that affects primarily, you know, people of reproductive age and, you know, impacts their ability to get pregnant. But how does it show up in midlife? How do let's say someone has known their entire life that they have PCOS and now they're in midlife and perimenopause. What, what changes for them?

Julie Duffy Dillon 6:04
Well, let's start with the good stuff. So like for many people with PCOS, you know, as all of us with uteruses, you know, we're starting to experience a drop in estrogen as we're going through midlife. And so people with PCOS, for many people like the estrogen starts to be almost kind of normal. And so cycles may be more regular and more of what was expected earlier in life. And as someone goes through menopause, of course, like symptoms from being anemic from a lot of blood loss from heavy periods, that will also go away. But as someone is going through midlife may perimenopause or in menopause with PCOS, there is also a lot more complications with insulin, and some levels tend to be higher. And same with triglycerides, and then HDL is or the kind of, quote good cholesterol, those lab values tend to worsen as someone's in midlife. And so you may notice with, especially with the high insulin levels, like really intense carb cravings, more than you ever had, and a lot more fatigue, just not like the kind of fatigue that's like painful. I have some clients who were even having to be on disability, like the fatigue was just so such a heavy burden in their life. So yeah, you may be really tired craving carbs significantly, and and then also noticing your cholesterol panels worsening. So, I know it sounds like such a barrel of laughs I know. But it's, it's a part of it. And you know, the thing that I people always ask me, they're like, What about my testosterone levels? What should I expect with that? And then what I initially I remember thinking, well, if testosterone goes down like that, though, that number itself, like if you're tracking your testosterone, it's like probably is going down. But because a person has lived like this, like lifetime exposure to higher intelligence, the facial hair or the androgenic alopecia or the hair loss on your head, like the those types of symptoms will just remain throughout throughout the life time because of just having that exposure to the higher antigens. So that'll be set. Yeah.

Jenn Salib Huber 8:18
Yeah. And I mean, it's so true about and I think it's important to to reiterate that the changes that happened with insulin resistance and cholesterol in particular, really happened to most people who are going through midlife and perimenopause, that it's not like a foregone conclusion. It's not something that happens 100% to everyone, but there's definitely a trend, it's definitely a risk factor. And so for people who have PCOS, who are already in that stage, because of the this condition, it definitely makes it more likely. And, you know, I think that's, I think probably one of the challenges managing that medically, and why they are often given advice around carbohydrates in particular, that maybe aren't helpful. And maybe you can touch on that, like, what are some of the dietary recommendations that people receive, that aren't serving them in midlife or before, but especially kind of as they enter this age and stage of life?

Julie Duffy Dillon 9:21
I hear a lot of people talking about their medical providers basically doubling down on the same old advice of just eat less and move more. And really, like forgetting that their patient or their client is like a human being that deserves to like I don't know, enjoy food and get like these met feel energized by food, really pushing the scale as a measure of health and that they're to blame for the higher cholesterol levels. Like you said, it's normal for anyone as they're going through menopause to experience that and then having PCOS on top of it, it just is going to make it even more of a challenge. And that doesn't mean that you need to then torture yourself with food. If anything, what we know from long term research on dieting is that chronically dieting or not eating enough for whatever reason, will only make cholesterol worse, make blood sugar worse, insulin worse, and also make you mood worse. You know, we didn't talk about like the psychological consequences of PCOS and midlife. But like, when someone has PCOS, up until about the mid 40s, there's a higher risk of a mood disorder. And then But then for everybody else, without PCOS, there's a higher risk of a mood disorder as you're going through menopause. So then you kind of just catch up with everybody else, it's already hard to live with this chronic condition. And then to just be told that you have to eat less and but yeah, lots of recommendations to do intermittent fasting or kind of food groups. And, again, just expecting you to be a robot that really is not supposed to have any pleasure at this period in your life or like, feel satisfied. Yeah,

Jenn Salib Huber 11:08
I find that so many people who have PCOS, at any age, it's mistreated as a disease of lifestyle and diet. And, you know, people are guilted and shamed into not being able to control it by, you know, diet and exercise, when in fact, it is not caused by diet and exercise or lack thereof, it is a metabolic condition that has, you know, that is inherited. And you know, that there are so many pieces to that puzzle that it could never be managed solely with diet and exercise. And that's not to say that food and movement don't have an impact on the person's experience. But it's certainly not going to cure it just by cutting out carbs and going to the gym five days a week.

Julie Duffy Dillon 11:55
Yeah, your behavior didn't cause it. And so it won't cure it, it may be a tool to like, help manage symptoms, but doing it to the point where it hurts is not something that you should be expected to do like. And I'm so glad you said that, because there is a video going around like as, right as we're speaking from a very well known medical doctor, talking about this myth about PCOS being caused by not eating correctly. And that's what he's saying. And he's spewing it all up. And we're all like, no, stop. This is like, dangerous. We've known for a really long time that it's passed down through families, that's not something that you cause. And, you know, like we said, it doesn't mean that like food and movement are a tool for you. But deprivation and harming yourself through exercise is not what we're talking about. It's I always tell my clients, I'm like, What can we add to what you're doing to help you manage your symptoms, here are some tools that we know, that can help your triglycerides. These are things you could add or this is something you can add to help lower your insulin levels. So then you don't feel so exhausted all the time. If there's, I mean, I want to say a bazillion, I'm gonna make up a number, like a lot of different ways. So many things you can add to your life and add abundantly in order to actually manage this condition in the season.

Jenn Salib Huber 13:22
And we'll talk about those in a couple minutes. But I you know, one of the things that I think is so important to recognize is that so you know, many people who have PCOS live in larger bodies, and that stigma really impacts our ability to access care at any age. But what I find is that they are often misdiagnosed in perimenopause as not being Peri menopausal, because it's assumed that their menstrual irregularities are being caused by their size or shape or body or what they're eating. And, and is that something that your community and the people that you work with have encountered as well?

Julie Duffy Dillon 14:05
Yeah, like lots of assumptions. And not believing people are like coming in with a complaint, or something's going on helped me understand what my body is doing and just assuming based on how a person how much space they take up in the room. Yeah, for sure if that happens, like all the time, it's it's really really infuriating and very sad.

Jenn Salib Huber 14:31
It is infuriating, especially since I think, you know, women are often misdiagnosed and perimenopause, regardless of their background, body size shape, because we assume that people have to be older, late 40s having hot flashes, you know, missing periods. You know, I had a 52 year old the other day telling me that her doctor said she was not in perimenopause because she wasn't having hot flashes in her periods were still regular. You know, there's so much misinformation about you know, what exactly is perimenopause. And I think that if you don't have that regular cycle, which many people with PCOS don't, it makes it even harder for your healthcare team together the puzzle for sure.

Julie Duffy Dillon 15:20
They think it's like something else that like a person with PCOS just has to, like advocate for themselves on and the burden is on them again, you know, to like, have to, like Google Scholar like what's going on in their body because the doctor is not really helping, and then having to advocate for care. I mean, just as a lot.

Jenn Salib Huber 15:39
It is a lot. So I love the added approach. It's totally the foundation of what I do as well. And, you know, what are some of the things that people with PCOS who find themselves in midlife, maybe, you know, having changes that are different from what their experience has been maybe better, better or worse, but what are some things that they can add in, that will help to improve their experience, and help them maybe just feel a little bit better about what they're going through.

Julie Duffy Dillon 16:10
So my very first recommendation is always make sure you are eating enough, like before we even talked about, like what you could add within that, like realm. And I really would encourage you to ask yourself, like, am I eating enough, because those of us who are socialized as women, I think we're just taught that we don't need that much. And ridiculously, like, low calorie amounts are considered like, oh, it's enough. But it's not like we need to eat. And especially right now with like, what is happening in our, like, political climate and, and just different areas of like, safety for different types of people. I think about how I want everyone to be awake, and like welfare, so we can all use our voice. So that's the first thing is like, make sure you're actually eating enough. And what that will look like for you, the listener is going to be different, you know, everyone has their own unique needs. But making sure that you know, the easy three square meals, like like you're attending to that, like, it's kind of like, not very sexy, but it also is like if you can start there. And I always encourage people to have at least one of those meals where they like sit down and it's like, warm, I don't know, they're not just eating it while they're like eating off someone else's plate, and taking care of everybody else's needs. But they're actually like sitting and eating a meal. And as I say that, it is so hot, where I'm living. So I'm like, maybe not at 100 degree weather. But you know, a meal, that is something that you took time to fix, and it has like it's satisfying. But outside of that, like let's say you you're in a place you're eating enough, it's really important to instead of focusing on like, let me take out carbohydrates, I always think that's like putting the cart before the horse, I like to recommend to people to instead add protein, fat fiber. And you know, protein is one that a lot of people, especially in midlife, if they've been chronically dieting for a long time, or they're recovering from an eating disorder, the body's exhausted and so that protein will have a couple of different roles that will help your body to recover. And it also can help things like those insulin levels. And for some people, they just get to the point where like, I don't really want a protein or I'm burnt out on some of these things. And so you can also see a fiber or fats added to your meals, like making sure you just have that type of stuff added to the carbohydrate to help with blood sugar balance and insulin. And then also set satiety, like those are all really great tools to help you feel actually like, oh, I have some up from this meal. The other piece of it, you know, other things to add are again, not very sexy, but really important boundaries, sleep and not just sleep, but like rest, like do you take breaks during the day. So you're like, you're like your body is not constantly in that revved up kind of place where you can just like down regulate your nervous system and like chill out. Those are things I find to be sometimes even more impressive than the food part is when I have worked with people who have really just found ways to make sure they had more rest during the day, more times for themselves, including those meals, that helps like things like their inflammation more than anything else. So yeah, so those are just like the starter pack of what you can add.

Jenn Salib Huber 19:38
And I love all that. And you know, I think that we we underestimate the value and the power of adding things in. And you know that carbohydrate conversation across all ages and health conditions is seems to be nothing. Right? Yeah. And you know, again, getting out of that all are enough. Thinking means Yeah, some people may feel better with less. Some people may feel better with more, but you don't have to cut it out entirely or only eat carbohydrates. Like there's so you know building that balance blade is adding in and you know, protein, fat and fiber are so satisfying and can have a positive impact on blood sugar and insulin. If that is, you know, part of your your PCOS kind of journey, I guess. I love that and rest. Oh, my goodness, rest is so important.

Julie Duffy Dillon 20:31
Right. So important. Yeah. Cuz what is it? 75% of people with PCOS has some kind of sleep disorder. And before? Yeah, isn't that amazing? And, you know, there's some people who are recommending people with PCOS to get a sleep study done every other year, which I'm like, Well, that just sounds expensive. Every other year, but maybe every three to five years. You and your doctor talk about it. But yeah, that's a really common experience. And part of it is because of insulin levels, you know, insulin is something that helps with the circadian rhythms of sleep. So if your insulin levels are high, it's going to affect your sleep. And, you know, if you have to get up in the middle of the night and pee a lot, or if people tell you snore, you all, if you wake up in the morning, you're not rested. You know, those are all signs that yeah, you could have a disorder too.

Jenn Salib Huber 21:21
Yeah. And I mean, that shows up for women and men life anyway. Because, yeah, it's one of those ones that can happen. It absolutely is. And yeah, it make a big difference. But I hadn't heard that statistic about PCOS. So thank you for that.

Julie Duffy Dillon 21:36
Yeah, you're welcome. We got lots of statistics for you.

Jenn Salib Huber 21:42
So you know, I love I just love this approach that you have around food. And you know, I think that for so many people who either have a lifetime diagnosis of PCOS or a later life diagnosis, you know, they often have this immediate fear around, what do I have to change? What do I have to cut out? What am I doing wrong? And so I thank you for bringing that just that, that comfort to the conversation that you know, you're not doing anything wrong, you didn't cause this, this is something that you know, is, is a lifelong condition. Even if you're no longer menstruating, there are still pieces of that that are going to be showing up in your midlife experience. And I think that that's going to be really reassuring and helpful information. So thank you for that.

Julie Duffy Dillon 22:27
You're welcome. And I hope it is I hope it is because I hope people really start to connect with the idea or like the notion of maybe they don't need to fix themselves, you know, like it's really fixing what's outside of us that needs to happen. And if we're too focused on like fixing something that's not really wrong with us, we won't be able to to course correct the way things are right now.

Jenn Salib Huber 22:48
And I love that you focus on like some of the benefits too because I think that that's, you know, for all people going through menopause and perimenopause, we do often get hyper focused on what socks and he's on the other side now I tell people it's awesome. Love it. You know like there is so much freedom in no longer menstruating even if it comes with auto Yeah,

Julie Duffy Dillon 23:13
I'm I'm counting down the cycles myself as a 47 year old I'm counting them down.

Jenn Salib Huber 23:20
So good. Yeah, the Paramount fine, but once you're through to the other side, it is like bring it I am I'm ready to not be a min straighter anymore.

Julie Duffy Dillon 23:31
Yeah, I'm ready.

Jenn Salib Huber 23:35
So I always end by asking my guests What do you think is the missing ingredient in midlife?

Julie Duffy Dillon 23:43
I I think what's missing is permission for pleasure and satisfaction with food.

Jenn Salib Huber 23:51
Love it? Absolutely. Yeah,

Julie Duffy Dillon 23:53
I think we're still allowed to enjoy our food, play with our food feel full with it, you know, feel that that um, that we get from our very pleasurable meal, you definitely deserve to have that every day.

Jenn Salib Huber 24:08
Thank you. And I know that people are going to be want to know where to find you because you are an amazing resource and have been in this for a while. So we're what's the best place for people to find you? And I'll of course include this in the show notes. But where should they look?

Julie Duffy Dillon 24:24
So if you are listening on your podcast right now, which you are, you can find me by searching for find your food voice. That's my podcasts and it's for anybody with a complicated relationship with food for people with it with and without PCOS. But then everything else. You can find it on my website, Julie definitely dillon.com And I do have a course in community for people with PCOS called PCOS power. So you can find all the information there about that too.

Jenn Salib Huber 24:48
Awesome. Thank you so much.

Julie Duffy Dillon 24:52
Thanks, Jen.

Jenn Salib Huber 24:54
Hey there. Thanks so much for tuning in to this week's episode of the midlife feast. Just remember that the midlife feast community membership is now open for registration and it is the perfect place for you to gather, grow and nourish with other people in midlife who know exactly what you're going through. You can find a link to join this monthly membership in the show notes. We'd love to have you join us as you feast on midlife. And if you found this podcast episode helpful or any of the episodes on the midlife feast, just a reminder that the best way to help others find us is to rate and review the podcast wherever you tune in