Why must you stop dieting if you have PCOS? How can cravings give you important information about your body? Why is PCOS a brain issue and not a reproductive issue? In this podcast episode, Dr. Cristina Castagnini speaks about the facts of PCOS with Julie Duffy Dillon.

MEET JULIE DUFFY DILLON

After sobbing in her boss’s office 15 years ago, Julie Duffy Dillon, registered dietitian and PCOS expert, taught her last diet. Once she saw the anti-fat bias, she couldn't unsee it. Now Julie helps people with PCOS confidently tackle health concerns moving forward without shame and blame. She teaches them how to burn their PCOS diet books while bringing clarity into their relationship with food and body. Julie wants to empower people with PCOS to grab their crown because they are King and Queen of their own castle. Visit her website, listen to her podcast, and connect on Facebook, Instagram, Twitter, and LinkedIn. FREEBIE: Check out Julie's free PCOS Roadmap and Diet Free Medical Care Informed Consent download.

IN THIS PODCAST

  • You don’t have to diet if you have PCOS
  • Misinformation around PCOS
  • Are you eating enough?
  • Gather your data
  • PCOS is (mostly) about hormones

You don’t have to diet if you have PCOS

[Even] if you’ve tried every diet or you don’t want to do that, there are so many other things you can do to help manage symptoms that don’t have to do with dieting or the scale and can actually feel better. (Julie Duffy Dillon)
A lot of people think that the best way to manage PCOS symptoms is to diet and cut out a whole bunch of food groups, but it’s not true. You really don’t have to diet if you have PCOS, and there are many alternatives that you can try to help you manage your symptoms and still get to live a full life however you want to design it.

Misinformation around PCOS

Because PCOS has not yet been properly researched, there is a lot of misinformation about it.
There’s so little actual research on PCOS in general and even less on PCOS and nutrition that I don’t think people even think there’s another way. (Julie Duffy Dillon)
The topic of food plays a big part in the discussions around PCOS because the way that care is framed around recovery from PCOS is neglectful, and people are not taught what PCOS means. A person cannot develop PCOS through eating too much or too little of a certain food because it is genetic and is passed down through family genes.
The push to diet may initially do something favorable like lower insulin … but only for about two or three months, and after that … long-term diet research shows that dieting or restricting … increases insulin and inflammation, blood sugar, blood pressure, cholesterol, all those different things. (Julie Duffy Dillon)
Dieting makes PCOS worse.

Are you eating enough?

What can you do instead to help your PCOS? Well, are you eating enough? Women are socialized not to eat that much, but eating enough is one of the most important things that you can do for your health. Set boundaries around your time to eat well, healthily, nourishing, and often, so that your body – and your mental and emotional health – are at optimal levels.

Gather your data

Look at your lived experience. What does your body tell you, and your mental, physical, and emotional health tell you about what your life experience is like when dieting? You have to be honest with yourself. Gather your data, listen to your cravings, observe how you feel, and decide from there to take a step toward holistic health.
What is your data on dieting? Go through every diet you’ve been through and on, what it did and what it didn’t do, and what was next? (Julie Duffy Dillon)
If you struggle with PCOS, move away from dieting, because that is the number one thing you can do that will help you to better manage your symptoms.

 PCOS is (mostly) about hormones

There are many different symptoms of PCOS, such as:
  • Acne
  • Facial hair
  • Alopecia or hair loss
  • Fatigue
  • High cholesterol and blood pressure
  • IBS
  • Thyroid issues
  • Mood disorders
The reason why all these things can come from PCOS is [because] PCOS is a … a condition that results in hormonal imbalances. It starts in the hypothalamus and anything that has to do with a hormone can be affected. (Julie Duffy Dillon)
However, to be fully diagnosed with PCOS, people need to meet two out of the three Rotterdam criteria: 1 – Irregular or absent periods 2 – Signs of high antigens like testosterone 3 – Evidence of multiple immature follicles PCOS is not a reproductive issue. It is a metabolic issue that starts in the brain.

USEFUL LINKS

MEET DR. CRISTINA CASTAGNINI

I am a licensed Psychologist and Certified Eating Disorder Specialist. While I may have over 20 years of clinical experience, what I also have is the experience of having been a patient who had an eating disorder as well. One thing that I never had during all of my treatment was someone who could look me in the eye and honestly say to me "hey, I've been there. I understand". Going through treatment for an eating disorder is one of the hardest and scariest things to do. I remember being asked to do things that scared me. Things I now know ultimately helped me to get better. But, at the time, I had serious doubts and fears about it. If even one of my providers had been able to tell me "I know it's scary, but I had to go through that part too. Here's what will probably happen...." then perhaps I would not have gone in and out of treatment so many times. My own experience ultimately led me to specialize in treating eating disorders. I wanted to be the therapist I never had; the one who "got it". I will be giving you my perspective and information as an expert and clinician who has been treating patients for over 2 decades. But don't just take my word for it...keep listening to hear the truly informative insights and knowledge guest experts have to share. I am so happy you are here!

THANKS FOR LISTENING

Did you enjoy this podcast? Feel free to comment below and share this podcast on social media! You can also leave a review of Behind The Bite on Apple Podcasts (previously) iTunes and subscribe!

Podcast Transcription

[DR. CRISTINA CASTAGNINI] Behind The Bite podcast is part of a network of podcasts that are good for the world. Check out podcasts like the Full of Shift podcast, After the First Marriage podcast and Eating Recovery Academy over at practiceofthepractice.com/network. Welcome to Behind The Bite podcast. This podcast is about the real-life struggles women face with food, body image and weight. We're here to help you inspire and create better healthier lives. Welcome. Hello everyone. Today's topic really is one that is near and dear to my heart. I, myself, personally do have polycystic ovarian syndrome or what is more commonly known as PCOS. It's not uncommon for people who have this to also have an eating disorder or to struggle with body image issues. Fortunately, over the years, so much more is known about PCOS and there's a lot more information and awareness out there about it. Fortunately, there's also someone out there like the amazing guest who is here with us today, who is an expert in PCOS and really helping people who have it. But for anyone out there who has it, want to say something, I'm sure something you've been told or possibly even confused about, we're going to touch on it today and possibly clarify lots of things you're confused about in today's show. So, with that, let's get on with it already, shall we, and bring on our guest. After sobbing in her boss's office 15 years ago, Julie Duffy Dillon, who is a registered dietician and PCOS expert taught her last diet. Once she saw the anti-fat bias, she couldn't unsee it. Now Julie helps people with PCOS confidently tackle health concerns moving forward without shame and blame. She teaches them how to burn their PCOS diet books while bringing clarity into their relationships with food and body. Julie wants to empower people with PCOS to grab their crown because they are king and queen of their own castle. [DR. CRISTINA] Well, Julie, welcome to the show. [JULIE DUFFY DILLON] Hey, Cristina. So grateful that you asked me to be on. Thanks. [DR. CRISTINA] Well, I'm grateful to have you here because I know this is a topic that so many people have questions about and struggle with. As I was talking to you earlier before we hit record, I have PCOS, so for me, this is a topic that I wish somebody would've talked about when I was going through all of my struggles. So grateful to have you here and anyone listening who has PCOS, all ears open. This is going to be a great podcast for you. So how did you get to working with people who have PCOS? Would you mind sharing a little bit about your story? [JULIE] Sure, yes, it was not something that was intentional. Like many people who work in eating disorder recovery, I wasn't really setting out to work in eating disorder recovery but I found myself really enjoying working with folks who were wanting to explore moving away from dieting. I was about three years in working as a dietician when I really started to see how problematic dieting and the pursuit of weight loss was. I was talking to people about losing weight and then also helping people recover from their eating disorders and diet culture and I'm like, "How come I'm telling people two different things?" This doesn't not make sense. I can't hold both of them. Over about a year or so, I had this cognitive dissonance that was exhausting but I eventually decided, I was like, oh, diets are harmful. This is really a big problem. I say that about PCOS because as I was starting to work with more people with eating disorders, many people also had this diagnosis of PCOS and I was like, "Well, what is this diagnosis?" As I looked into how to help as a dietician, I'm a registered dietician, all dieticians, when we were in training, we carry around this really big thick nutrition book. It's called [inaudible] book, that's just the author's last name. So everyone has the book and we usually keep it and we look it around for decades. But I remember opening up the book at PCOS and it was like, help people lose weight and I'm like, I don't do that anymore. There's another way. There has to be another way. So I just started to really search for other people who were looking into helping people with PCOS that were not also pursuing weight loss because I was like, obviously that doesn't work for the majority of people. What are people supposed to do if they're eating disorder recovery? Like pursuing weight loss can be deadly, so we need to find another way. So I started to do that and I found some new ways and then, you know how things work, people just start talking and they're like, I told my friend who has PCOS that they don't have to diet and so they're going to schedule with you and then their doctor found out, so lo and behold then most of my clients I was working with had PCOS. At that point, I think this was around, I don't know, seven, eight years ago, I was mostly working with people with PCOS who are also trying to recover from my eating disorder when I got a phone call that was really strange. It was from a TV producer out of LA, which I live in North Carolina, I don't get a lot of TV producers calling me and they said that they are filming a reality show where I live and they needed someone who specialized in PCOS, would I be willing to film? I was like, I guess so I think this may be the only chance as a 40-plus year-old woman who has two kids. I'm not really the like reality show prime person, so this may be my one time to do this. I did it and from there the show was my big fat, fabulous life. And Whitney Thor is someone who has PCOS and talks about recovery. So by doing that, I really then allowed other people to connect with me outside of my little southern town that I live in and so I started to work with people all over the world who have PCOS too. I love being able to share with people like, you don't have to diet if you have PCOS, even if you are not trying to recover from a eating disorder. If you just have tried every diet or you don't want to do that, there are so many other things you can do to help me manage symptoms that don't have to do with dieting or the scale and can actually feel better. So it's been a thrill, it's been amazing and I feel really grateful and privileged to be able to do this type of work to bring people other options. [DR. CRISTINA] Well, that's so exciting, first of all, to be on a reality show talking about this and I mean that must have been quite a thrill. [JULIE] Yes, it was bizarre but you would too, you probably just would roll with it and yes, it was intense. But it was a fun time. [DR. CRISTINA] So you'd started working with so many other people like you really expanded, sounds like. So how many years have you been working now with people who have PCOS primarily? [JULIE] Probably around 15 to 20, but I didn't really start specializing in PCOS until about 15 years ago. [DR. CRISTINA] So lots of experience. [JULIE] Yes, I'm quite seasoned now, I feel like [DR. CRISTINA] How refreshing to hear you don't have to diet if you have PCOS because as I was sharing, I have it too. The whole message the whole time was, you have to eat this certain way. There's a PCOS diet, there's all these guidelines. So I'm sure people listening are going, "Wait, what do you mean I don't have to died? There's not a certain way I have to eat?" So how do they not diet? How do they get rid of that idea of there's this magical PCOS diet that they have to find and follow and all of that? [JULIE] I believe that most people when they're told they have PCOS, they're told so little. I don't know what you were told Cristina, but so many people are told here's birth control, come back when you're trying to get pregnant or nothing. Basically, they're told you have to live on these terms, now you just have to restrict. There's so little actual research on PCOS in general and then even less some PCOS and nutrition that I don't think people really even think there's another way. I remember when I first started specializing in PCOS, I would talk to people who have it and they're like, that's funny. I would never even think there would be a dietician specializing in this. I was like, that's funny. I can't believe you don't think there would be someone specializing because PCOS has such a big part of, like the topic of food is such a big part of it. Some of it again, like we're saying is super problematic but I think the way that PCOS care right now is framed is super neglectful because again, people aren't really taught what it means, what does it actually mean to have PCOS. Most people leave with a diagnosis thinking they caused it, which is totally not true. That's like the biggest myth out there because we know it's passed down through families. It's not something that a person caused by eating too much of something or weighing too much or anything like that. It's definitely inherited. What we do know is that the push to diet may initially do something favorable, like lower insulin improve cycles, but only for about two or three months. Then after that, long-term, when we look at long-term diet research, because we don't have long-term PCOS research, but long-term diet research shows that dieting or restricting or just not eating enough, for whatever reason increases insulin and increases inflammation, increases blood sugar, blood pressure, cholesterol, all those different things. Is anyone with PCOS knows, like those are the things that you basically are threatened that that's going to be worse if you don't diet. But what if actually dieting makes it worse? I know you asked what can you do instead? Well, my number one recommendation always is are you eating enough? Are you actually eating enough food? I think for those of us who have socialized as women, we're taught we don't need to eat that much. Especially like for what's going on in the world right now, we need to be awake, we need to be energized to make sure that the world gets fixed. Eating enough is like one of the most important things, making sure that you have boundaries set up in your life basically where you can have time to eat and feed yourself and eat something that actually is satisfying. I know that's not fancy. That is so not sparkly. I know so much of research is like buzz words and slick in the messaging, but nutrition science is just not that slick. It's all correlational research pretty much. What it comes down to for so much of PCOS management and the symptoms is just making sure you're eating it enough and then also doing things like getting enough rest and taking care of yourself in therapy and stress management but taking out a food group, yes, that's actually connected with making your PCOS symptoms worse, long-term, not better. [DR. CRISTINA] So when you're saying taking out a food group, I remember being told watch your carbs [JULIE] Oh yes. Like watch them. The carb thing is infuriating to me because there's this expectation that living with PCOS that you are just going to have to be okay with torturing yourself with food. I don't know, with your PCOS experience, if you have had intense carb cravings, like many people will talk about with PCOS and when that happens and when that's happening all the time, that's because insulin is typically really, really high. When insulin is really high, basically you're eating food, but it's not being able to be metabolized for energy. So your body's starving, like every cell in your body will be screaming to eat. When you're starving and you're also saying, I can't have that one thing that's going to make me feel better, that to me sounds like a hundred percent torture. [JULIE] Instead, what we as clinicians helping people with PCOS can do is help you find ways to lower insulin and also include carbohydrate. You can do that. For some people they find as insulin levels go down, their cravings change. Like they'll still have them because people without PCOS have them too but they're not like these primal urging cravings where it just feels like you're going to die if you don't eat them. That'll start to go away. In the future as people's insulin levels come down with these other ways that we have found to help, then these carb cravings end up being a way to just know, oh, I need something. I may need a change of medication or I haven't slept enough. I don't know, basically that all sums up to be, telling people to cut out carbs, basically keeps people from a way of knowing how they need something. This carb-craving mechanism with PCOS is this gauge to know when you need to change things around and by telling people to just cut off that part of their body and not trust that part. It's really sad to me because it's, I don't, again, it's painful, but also, it's teaching people to not trust their body and I think their body has a lot of information. [DR. CRISTINA] Well, I mean, that is refreshing and I'm wondering people listening going, well, how do I do that, how do I just, everything I've been thinking and hearing, even if I wanted to, what does that even look like? [JULIE] I know. It's a hard sell, I'll tell you. I'll say that. But the thing that I encourage anyone listening who is feeling skeptical is what about your own data? What's your lived experience with diet so far while living with PCOS or maybe even before you were diagnosed with it? Or even someone who's listening who doesn't have PCOS, what is your own data with dieting and really go through every diet you've been on, what it did, what it didn't do, what was next? As you map this out, there's a lot of people who are living with PCOS who have been diet since they were in preschool. Literally since they were three or four years old, been told that they need to eat less and now they're in their forties or fifties and okay, so is that enough evidence? I hope it's enough evidence for you to know that you've tried enough of them. If you have been dieting your whole life, it can be hard to know how do you do anything different if that's the only way to know? For a lot of people, it's first starting to use some non-food things to help manage the PCOS, keep doing the food thing you've been doing. But I talk to people a lot about using supplements, and ACETOL is a really common supplement for people with PCOS using things like that and working on things like sleep and boundaries and starting to just have permission to listen to your body a little bit more and finding out what it needs. For some people they need to work individually with a dietician or a health coach or someone that can help them sort through their food stuff to figure out how to make this all work. But it really, living in a culture where dieting is normal and especially if you have to live in a body that's told it is not okay, it's not acceptable to be the size you are, which for many people with PCOS in a higher weight body, they are told that their body is not acceptable. So trying to not diet in that body again, that's a hard sell because I appreciate the world treats you differently. But it also, if you're looking for another way to manage your PCO symptoms, moving away from dieting is something that for hundreds of probably thousands, I don't count really, but it's more than hundreds now, has been the way to sustainably manage symptoms and feel pleasure and satisfaction again with food and just life in general, like being engaged in life. It may mean cultivating a bubble of people who can support you to not diet and having some nice boundaries with people who are dieting but finding those ways, it's not something that's like, I just sat my fingers. It's not just like a quick thing, it's something that takes time for sure and a community to help people to do that but yes, it is possible. Again, I think the first thing is to look at your own data. It is valid. It's so much more impressive than any research that we're going to read because it's yours. And have you dieted enough yet? Have you tried the restriction route enough? I'm rooting for you to say, yes, it's been enough. [DR. CRISTINA] I really appreciate all that you're saying because I think many people may not even, like, I didn't know I had PCOS for years and years till I went and tried to get pregnant and all of a sudden it was like light bulbs went off because for so long, and maybe we could even touch base with this for people listening, like, how do you know if you have PCOS? But symptoms were being treated for so many years of my life that I didn't even know were PCOS symptoms like acne, and facial hair and all these other things that I was like, I'm struggling. It's on acuta like three times and for acne in my face and later hair removal and all these other things that I was like, what is going on? Or like you said, restricting, my eating disorder and my cholesterol was super high and I was being told you're obviously lying about how much you're eating [JULIE] Oh yes. [DR. CRISTINA] Cut out this much and cut out, and not just the carbs. It was like cutting out things that would lower cholesterol. I didn't know that if you were restricting it would raise cholesterol. I know now, but there was all these things I wish I would've known, which is why I'm so glad we're talking about this so people can go, oh wait a minute, I'm struggling with all these other things. So maybe we could talk about that, what are the symptoms of PCOS? [JULIE] Yes. Well I'm glad you mentioned that because that's a big aha moment for people that I work with in my community is like, oh, all these other symptoms I've been having that I thought were separate from PCOS actually have the roots in PCOS. Like you mentioned acne. Some people have lots of facial hair or angen alopecia or loss of hair on their head. Fatigue, the high cholesterol, the high blood pressure. There's also IBS that's really common for many people with PCOS and thyroid issues. The reason why all these things can come from PCOS is, PCOS is a hormonal, it's a condition that results into a hormonal imbalance. It starts in the hypothalamus and anything that has to do with a hormone can be affected. Our vitamin D levels could be affected by PCOS because vitamin D is a hormone. So I don't know, that was like a random one. Mood disorders are oftentimes the very first symptom of PCOS before puberty. Many people that I talk to with PCOS are like, "Oh yes, I was so depressed and or so anxious or both before I started my period." There's research now showing that that may actually be like the first symptom of PCOS. So yes, all these things you make be experiencing may think are all these other things, but they actually may be all related. The symptoms of PCOS can we can rely on the criteria for diagnosis to figure that part out sometimes, but that needs to change. [JULIE] But there are three criteria and people need to beat two out of the three criteria to get diagnosed. It's the Rotterdam criteria and one is irregular or absent periods. The second is signs of whether clinically or just through assessment of high androgens like testosterone. So like acne oftentimes is like a cystic acne that's from higher antigens like you were experiencing or facial hair. Then the last one is evidence of multiple immature follicles on the ovaries. I know they're called cysts in the name, but they're not actually CYS at all. They're these like immature follicles. What really stinks about this diagnostic criteria is if you have to be two out of the three in order to get diagnosed with it, but two of them, the first one, the periods and then the third one, the immature follicles. [JULIE] In order to actually have those occur, you have to be of menstruating aid. So someone before they have their first period or after the last one technically cannot even be diagnosed with PCOS. So does that mean it goes away at menopause? No. Cause it's like not caused by, it's not, it's not like really a reproductive issue. It's a metabolic issue that starts in the brain. So there's lots of problems with that and for a lot of people they'll tell me some of the symptoms besides that criteria was really intense carb cravings, like I was talking about before, super heavy periods and really like long time between periods and lots and lots of fatigue. Like just so tired, like a painful fatigue. I don't have PCOS I, again, I feel really privileged to even like talk about P PCOS and teach about it. But what I've been able to gather is like the car cravings are different than the ones I'm going to experience. Like they're primal and they're intense and then the fatigue is different too. It's like a painful heavy fatigue that can make some people not be able to go to work to a point where they're on disability for it for it. But I hope that answers your question, but yes, those are some of the ways for people to know if they have it or not. [DR. CRISTINA] Yes, and appreciate that. Because I think it is confusing to know like, well how on earth do I know if I have this? It can get confusing with eating disorders too because sometimes people are restricting, they lose their periods and so it's like, am I not having my period because of the restriction in the eating disorder or because of the P Cs and it's, [JULIE] Well, there's also that complicated spot of is it PCOS or is it hypothalamic amenorrhea? That's something that it can look like PCOS but really be ha or it could be both certainly people will have both because eating disorders are really common with PCOS and but yes, one of the ways to know the difference between hypothalamic amenorrhea and PCOS is the size of the follicles. Those immature follicles, they'll be different. I don't remember the size, but I just know they're different. [DR. CRISTINA] So people might go, what is the other one? [JULIE] Yes, hypothalamic amenorrhea, sometimes it's called HA, but if you know in your heart that you're restricting, dieting, some people may not want to use the words eating disorder or anorexia, but you may know in your heart, Okay, I know I don't eat that much and you've been diagnosed with PCOS, but maybe you're not sure if it fits. It could be this other thing, this. A lot of times people use the initials ha. So a good Google search, PCOS versus HA will take you to where you need to go. Yes. [DR. CRISTINA] So when you get somebody in, say do you refer them to a doctor to get labs done or more testing to confirm the diagnosis? [JULIE] If someone's not really sure if they have it or not? I think finding a doctor who's willing to explore it, especially if you don't have a look like PCOS sometimes people will not be in a higher weight body and have PCOS and some doctors will be like, no, there's no way you have it because you're in a lower weight body. Or and I just hope know you can be any size with PCOS, like basically the size diversity is same within PCOS as it is for people without it. But one of the easiest things you could do is if you have an OB/GYN, I feel like those are the easiest to access PCOS diagnosis. Like they're the ones that probably see it the most because of their relationship with the cycles. [JULIE] But if they could just even get a testosterone level, I know that doesn't hit everybody who has PCOS, but it's going to hit a lot of people. Just getting that lab done. That's what I've had many people over the years. Can we find a doctor just to get that lab done and honestly, you don't even really need to get labs done. If you can talk to a doctor and say, I have regular periods and I'm losing hair on my head, or I have this cystic acne, I have evidence of high androgens, that's all I need to meet. The criteria is for a doctor to be like, "Yes, you got it. Don't even have to take any blood." So and the thing about that experience too, especially for like how PCOS is currently diagnosed, it's really normal, really typical to have this like period of like questioning like, wait, do I have it? [JULIE] I don't know if you experienced that, but do I have it? Do I not? Because it just feels so ambiguous and we know a little bit about it. For a lot of people, they're like, I just don't know. So for some people they may never feel like, Yes, a hundred percent I have it and that's okay because the non-diet recommendations to managing PCOS won't hurt anybody if they don't have it. that's the other thing about it. it's something that will help people without PCOS too. Yes. [DR. CRISTINA] Well, they're non-dieting. [JULIE] It's good for everybody. I highly recommend, five stars all around. [DR. CRISTINA] I do get a lot of people who are struggling though because they get the diagnosis and a lot of the work I do is they're so devastated. They're almost get the message of, oh well you're never going to have kids. So there's this pressure of I need to follow the PCOS diet because I've been told if I don't get this under control, I will never have children. I know I've certainly given that message too, really freaking out. Like what? Unfortunately, I think that is the message given a lot of times. So there is this maybe disbelief of what, come on, I can't really follow what you're saying. I've got to really do what the doctor's saying cause I'm afraid if I don't there might be these long-term consequences. So I don't know if you encounter that at all in your practice. [JULIE] Yes, a hundred percent. So I told you earlier, I don't have PCOS, but I did struggle with infertility for about 10 years and primary and secondary infertility. I would've cut off my like left arm. So I was like, we'll get you pregnant. Just cut off that arm. I think I probably would've done it. I'm glad I didn't, but it's, you don't mess with maternal desire. That's one of my mottos. So if using a diet, because we do know short-term, like most of the fertility research in PCOS is six weeks long. There's a few that are 12 weeks long. I think it's hysterical. The 12-week duration research of PCOS is considered long-term. [DR. CRISTINA] Wow. [JULIE] I know. So the short-term research, the six week long research, it does show like improved like egg qualities, cycle length improves, insulin, lowers blood sugar lows, it does all these great things. But unfortunately, what we know long-term is it can make those things worse. That's where I'm like, it's your decision, it's your call. For some people doing those things, especially like most of the people that I've worked with PCOS also have a very complicated relationship with food. So part of that decision to diet to improve fertility in the short-term, I think also includes sometimes spent on informed consent of like, this may also make your relationship with food more complicated. Again, because restricting leads to binging for a majority of people, they're going to experience that what feels like a loss of control or not being able to stop eating. [JULIE] Because if we hold our breath and we finally are able to breathe, we're going to guess for air. Same with food. So just knowing that like, so, and for people that I've worked with, they've, they've gone into it in in a sense of it's their body. They could decide what they're going to do with it. Then also having this information. So when the binging or that out of control eating happens, knowing that it's not, they didn't do anything wrong, like this is just part of what they were choosing to do to help with their fertility. One thing I have been able to appreciate is that we have more medicine now. We have more ways to help people ovulate with PCOS. We have more interventions. Unfortunately, there's lots of discrimination based on size to access these interventions, which really makes me mad. [JULIE] Again, I'm like, who's messing with maternal desire here? Like so someone has a higher BMI, like would they still need to have a way to have a family and figure out a way to make it work, doctor? I will get pushback on that, but I am ready for that argument. Because I do, I think it's like one of the worst ways to discriminate against someone is preventing them from being able to have a family. But anyway, yes, it's your decision on what you're going to do with your body, but I hope you do have informed consent and if you choose to do one of these like restrictive things and just know that it could provoke long-term more symptoms and harm to your PCOS, but it's like, I appreciate why you're doing it? [DR. CRISTINA] Oh gosh, going back to what you just said people are encountering many hurdles or red tape if you will, to getting some of these medications you're talking about, do you have any advice for them, what to say, do, anything like that? [JULIE] Oh, I mean I always have to take a deep breath because it's such a big deal. If you're experiencing weight discrimination while you're trying to have a family, like you shouldn't be the one to have to advocate for yourself. Doctors should have their stuff together to be able to provide this care to you. The science that, or the reason that people often use is that it's not safe or they don't have as good a number, but they also are willing to help people over the age of 35 to conceive. The line of where a lot of interventions start to dip with age doesn't affect their recommendations. So why are they making this, the line of BMI where there's an effect with conception? It's like, doesn't exist in the same way it does it with age. There's not this big drop. It's just there's lack of people really willing to provide the care. If you're willing to do it on someone who's over the age of 40, I don't know what, some people I know have a cutoff, but not someone over a BMI of 35 or something. I don't know, I just threw that random number out, but I know that's a big one for some people. I have a problem with that because the data doesn't support it. [DR. CRISTINA] Well, I hate the BMI anyway. [JULIE] Yes, same. I'm like, I can't believe I'm even using it again as a reference point because it is total crap. But I know that's like, in practice what fertility centers are using. [DR. CRISTINA] When are they going to get rid of this thing, BMI? [JULIE] What is it, like the arc of justice is long. I think the arc of change in healthcare is also long. That's why I'm like, take a deep breath, take someone with you to appointments. I have a lot of people with PCOS who've told me, take a thin person with you when you go to these appointments. Oftentimes, they're treated differently. Take at least somebody else with you. [DR. CRISTINA] That's, sorry, for those of you who are listening, my jaw just dropped. That's awful. What? [JULIE] Well, I mean I've never been in a higher weight body, so I don't know what it's like, but my peers, my colleagues, people with PCOS, they have shared with me when they bring people in more "acceptable," I don't like that description, but a body that's at a lower weight with them that they're treated differently. Then also like having a team to connect with before and after appointments to help you navigate just whatever gets activated. For some people it's like really traumatic to try to advocate for yourself or just access this care. So get the support you need for sure. There's lots of people who are doing the same thing and try to connect with them because there's, I think there's so much more power in numbers in that way. [DR. CRISTINA] Well, I certainly hope I know there's more talk about weight bias and medical care and I certainly hope the more we talk about it. Thank you for bringing it up again. I know several podcasts where this comes up but the more I listen I hope it gets heard and listened to, there's some change because it's awful. [JULIE] If you have a listener who is like, how do I do this or I don't have anybody in my life, I have a diet, free doctor visit handout you can get on my website for free. It's basically when you print it out, there's ways you can customize it and say I don't want you to talk about dieting or I don't want you to weigh me. If you go to it's julieduffydillon.com/voice, you can get to the download. The front of it is purely for your interaction for the doctor but the back of it, I intentionally made it in case you did plant a seed with this provider. Because you will. By you advocating in that moment, there's going to be some providers who are like, "Huh, I think they're right. Or they're onto something." So I have a listing of like research and just basically some rationale on why supporting you in this way without dieting or weighing you can be something that's health promoting. It's really cool to see, especially because I live in this smaller town working one-on-one with clients, I would know about a client going to a fertility clinic or an OB/GYN and advocating and that started a change in the practice and then other clients benefiting from it and talking about how they noticed the change. I was like, that's so great. So if you do have the energy to advocate, it's going to help other people too. So we appreciate that. [DR. CRISTINA] I appreciate that you made that. That's fantastic. Thank you. [JULIE] No problem. My pleasure. [DR. CRISTINA] But that also gives me some hope when you're saying you've firsthand seen some change. So that's good too. [JULIE] Yes, it's coming along. I think like we just got to keep on talking about it, like you said. I'm glad other people are talking about it too and podcast. I think it's becoming more normal of yes, this is a problem. The person is not the problem. How we're delivering healthcare is the problem. [DR. CRISTINA] Absolutely. There's archaic things going on that need to be changed for sures [JULIE] Archaic, yes, that was the best descriptor. You can move out the 1980s at least. I don't know, come on [DR. CRISTINA] Was the BMI from the 80's? [JULIE] I know. Exactly. Yes, I was in school to become a dietician when the BMI changed to, like it used to be if you were between 20 and 30 you were considered normal weight and 30 to 40 was overweight. When I was in college to become a dietician, overnight they changed it. So people went from thinking they were at this "normal weight" to no longer being that. They just kept narrowing it and narrowing it. The reasons was always ridiculous, not based in any science, just like, we like the even number and we didn't want to be confusing. So male and female are the same and same with age. How is that, like we're not going to weigh the same as we did when we graduated from high school. [DR. CRISTINA] No. We should have a podcast on that. [JULIE] I'm ready. And it really does impact PCOS care. That's like why it's something that I'm always talking about. I think it's really getting the way from people like going to their doctor, getting accurate diagnosis, accurate treatment, other options besides the standard, what they get given. [DR. CRISTINA] Yes. I will be throwing a party the day that that is abolished from healthcare. [JULIE] Yes. I'll come with you [DR. CRISTINA] Throw party, Julie. Well thank you again for sharing that resource. If people want to find you and possibly work with you or even follow you, you have a fantastic Instagram, how can they find you? [JULIE] My website's julieduffydillon.com and since you're listening to a podcast, I do also host a podcast, blah, blah blah. It's called Find Your Food Voice and it's for people with and without PCOS and we explore just your complicated relationship with food. But you can get access to everything on my website. [DR. CRISTINA] Awesome. Well thank you so much. Any final words before we end? [JULIE] No, I mean I think my biggest thing that I want everyone with PCOS to know is that you don't need to fix yourself. We need to come together and fix the neglectful PCOS healthcare. The more you can just really focus on that, use it as a meditation, you do not need to be fixed, I think the better things will be for you and everybody else with PCOS. [DR. CRISTINA] Well, then thank you so much. [JULIE] Thank you. Appreciate it. This podcast is designed to provide accurate and authoritative information in regards to the subject matter covered. It is given with the understanding that neither the host, the publisher or the guests are rendering legal, accounting, clinical, or any other professional information. If you want a professional, you should find one.