80: Why Women with PCOS Don't Need to Torture Themselves with Diets
PCOS (polycystic ovarian syndrome) is a metabolic and hormonal disorder that, in many cases, wreaks havoc on the entire body. The cause is unknown and the treatments are far from well-established and/or completely grounded in science.
Common advice from medical practitioners is to lose weight. Unfortunately, however well-intentioned the advice may be, the pursuit of weight loss through diets more often than not leads to even more pronounced and worsened disease state in the body. Women with PCOS are in a rock and a hard place: they're told to lose weight to help treat the condition, but attempting weight loss only makes behaviors and mental health worse off than they were initially.
So what should women with PCOS do with their diagnosis? Listen in as I speak with PCOS expert, Julie Duffy Dillon, RD, about what women with PCOS can do to pursue health in the face of their diagnosis.
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Full transcribed episode:
Paige: You’re listening to Nutrition Matters Podcast with Paige Smathers, Registered Dietitian Nutritionist. Hey everyone, it’s Paige. You’re favorite nutrition podcaster and dietitian. Nutrition matters podcast explores what really matters in nutrition and health with a sensitive and realistic approach. This podcast relies on the support of listeners like you and needs donations to keep this project running. To help support this podcast, please consider making a donation at paigesmathersrd.com/podcast. If you find this episode interesting, engaging, or helpful in your life, please consider donating, sharing with friends and family and leaving a review on itunes. You can leave a review about this podcast straight from your podcast app. Search nutrition matters podcast, click reviews, and then write a review. You can also find me on instagram and FB @paigesmathersrd if you would like to have a little more food for thought. Thank you for listening.
Paige: Hi everyone, welcome back to Nutrition Matters Podcast my name is paige smathers and I’m your host. And I am so excited to bring you this episode all about PCOS and how you really don’t need to torture yourself with diets to treat it, manage it, and to live a happy and healthy life with a diagnosis of PCOS. If you don’t have PCOS I still think you should listen because there are so many kernels of amazing truths in what Julie talks about in this episode. And I think you’re going to get a lot out of it, no matter who you are and what your background is. So stay tuned. So I invited Julie Duffy Dillon to come on this episode who is a registered dietitian nutritionist in private practice and I’ve had her on the podcast before where we talked about recognizing disordered eating in a thin obsessed world. Julie is the host of the “Love Food” podcast and you know we’re good friends because we love to talk about podcasting and our mutual interests in terms of not dieting. So we bring you this conversation in this very same context of how do you take good care of yourself with a diagnosis of PCOS while avoiding some of those common pitfalls that people recommend, really restrictive diets which only really exacerbate the issues. So before we get into that, I just wanted to say that if you enjoy this podcast and if you like what you hear, you can do a few things to help give back. One is to leave a review on itunes and I love it when I see those reviews come through so thank you to those of you that have already done that. Another one is if you would like to continue the conversation outside of the show with some listeners, we have a FB group and you are welcome to check that out. It’s called Nutrition Matters Podcast Study Group and we would love to see you there! Also if you like what you hear and you wanna learn a little bit more about the how to and the really practical application of not dieting but living a healthy, happy life, you are more than welcome to join us over in my online course where you can check out more details on my website, paigesmathersrd.com/course. This course is intended to help you move away from chronic dieting and find a way to hone in on healthy place with your food and with your sleep and with your self care. And also with your mindset towards food and we have a lot of fun in the course so I would encourage you to check it out! And with that, let’s go ahead and get on and talk with Julie Duffy Dillon all about her deep dive into the world of PCOS.
Paige: Alright, Julie Duffy Dillon, welcome back to NMP!
Julie: Thank you so much Paige! I am so excited to be here and honored to be a guest on your show. So thank you.
Paige: Yeah, you’re welcome and thank you for your time and expertise on such an important topic because this is of all the things, all the diagnoses that walk through my office door, this particular one, PCOS, tends to just kind of have some really common threads. And one of them is just utter confusion. I think there’s so much information out there that’s not necessarily good information a lot of holes in their research, a lot of sort of questions about what we really know and what we don’t know about this condition and the women who suffer with it often are just feeling really, really hopeless and really confused. So that’s why I wanted to bring you on, just to talk about this to provide hopefully a resource for people to kind of get introduced to a different idea and a different view on how to approach PCOS. does that sound like a good sort of foundation of what we’re doing here?
Julie: Yes, and I totally can appreciate that confusion cuz I feel like as a provider I was really confused too. Like my clients would come in with PCOS and I’m like, “ughhh I’m not really sure what I should be doing here.” cuz I feel like it’s something that is so under researched and is affected by lots of different systems in our world that are not really helping women with PCOS. so i’m excited to dive in cuz I’m hoping it will provide listeners who are affected by PCOS and maybe people in their family but also other providers, other therapists or dietitians or medical providers who work with people with PCOS. I hope it gives them some food for thought, like you always say. Hahah and just some, something to think about.
Paige: I love food puns.
Julie: Yeah me too.
Paige: I just love them.
Julie: But anyway, yeah, I hope it gives them just another kind of direction to go so then they feel less confused and more helpful.
Paige: Definitely, like helping without harming right? That’s always what we’re trying to do and just as a little side note, you’ve been on the podcast before when we talked about how to recognize disordered eating in a thin obsessed world. And my listeners will probably already know this but I wanted to just reiterate that I’ve gone through and I’ve deleted some of those first few episodes and one of your, that one that we did, is one that I did delete but I’m going to be republishing. So if you’re listening to this anytime in the future, you might be thinking, like wait-where’s her other episode? It’ll come soon. It’ll come in the next few months when I’ll republish it. And that was a really fun conversation too. And super super important. So, ok, so PCOS I think, ok, I wanna define PCOS but before we do that I wanna talk about how when you kind of come to this idea that diets just don’t work, and maybe your provider or maybe you’re not someone who is in the medical field but maybe you’re affected by dieting in one way or another, which we all are. And maybe you kinda say, diets don’t work and I don’t wanna do that, and the next thing you know, you’ve gotten slapped upside the head with this diagnosis of PCOS and the recommendation from your provider is, ok go on this really strict diet. Or you are a provider and you’re like, kay I don’t believe in dieting but this is all I’ve ever learned about how to treat PCOS-is this really strict diet. So that can cause some cognitive dissonance, right, where you’re like, wait a minute, how does PCOS fit into this non-dieting paradigm?
Paige: So that’s sort of what I see us trying to fill in the gaps today plus just provide some good basic information because like I mentioned earlier there is just so much out there on the internet about what to do and what not do about PCOS. And a lot of that information just contradicts themselves and causes a lot of confusion. So that’s kind of where I’m coming from.
Julie: Definitely. I’m ready.
Paige: Ok, perfect. So I think we’ve talked about this acronym of PCOS and some people are probably like, kay can you please tell me what that heck that stands for. So go ahead and let’s just talk about what PCOS is and we’ll kind of bounce ideas off of each other with this.
Julie: Yeah, I’m so happy to be the one to share this. Especially if someone has never heard of it or is new PCOS because there is a lot of really bogus stuff out there and this past summer i have a grad student, a nutrition intern, that has been working with me and she is a woman that also has PCOS and we’ve been really digging through the research and putting together a resource for women who if they wanna know about PCOS or if they have it. And it’s cool because i’ve learned more about it and PCOS starts, not starts, but stands for rather, polycystic ovarian syndrome and it basically is a set of symptoms that resolves from a hormonal imbalance. Honestly, it’s a condition that is a diagnosis of exclusion which is a really horrible thing to have because there is no exact thing, like, I don’t know, if you have diabetes or if you have I don’t know cancer, you have or there’s like these exact markers that they can find and with PCOS it’s just like, we know you don’t have this and this and this so you have this. Haha
Julie: It’s really, it’s really just uncertain for so many people. Like people often times will say, well I’m not really sure if i have it, even though they say I have it because it just is weird. And basically, it’s an endocrine disorder and it’s characterized by high levels of androgens which are also called sex hormones. So especially testosterone, that’s the one in particular that gets the most press with PCOS and women. And all of us, whether we have this condition or not, we all have testosterone floating in our body and women with PCOS just have more than women without PCOS. And they also experience some kind of irregularity with their menstrual cycle whether they have a miss period or it’s irregular or painful or they just never ovulate and so they never have a cycle. And they’ve changed over the years how to diagnose this, diagnose PCOS, and a lot of times this is important, especially lately because people will have a lot of the symptoms of PCOS and then go to the doctor and get an ultrasound done and the doctor will not find these “cysts.” I’m kind of using air quotes right now that you can’t see. These cysts in their ovaries and so like “Oh you don’t have it because you don’t have the multiple cysts on the ovaries” but really a woman can have polycystic ovarian syndrome and never have these really follicles on their ovaries.
Paige: So my understanding is that you need to have 2 out of the 3 symptoms. Right?
Julie: Yes. So one of them is these multiple cysts or these multiple follicles but the other two is just some kind of irregularity with your period or absence of ovulation and the other one is high levels of androgens or just a sign high of androgens like excess body hair, facial hair, or hair loss on the head. So they don’t even have to have a blood level drawn if they just have symptoms of it, that’s enough.
Julie: And so, you know a lot of times people will be like, well I just never had cysts on my ovaries so I don’t think I have it. And I’m like, well, you have it. Hahah you know?
Paige: And something to clarify in case people haven’t caught on, this is only a problem in women. Alright? S we’re talking about polycystic ovarian syndrome and so we’re talking about…
Julie: Well, yes and no. Because there’s been some people who are finding something similar with men. Soo…
Paige: Is that right?
Julie: Yeah. But I’m not prepared to talk about it but when I go to conferences that are talking about this, it’s kind of the buzz. But yeah, there’s something similar that men experience.
Paige: Interesting. I did not know that. I just..
Julie: Well, you know.
Paige: And gender isn’t binary as we think anyway right? I mean,
Julie: Exactly. I mean that’s a good point too. And you know, something that is kind of a side note, but I think is important is that some people say, well if I have high testosterone does that mean I’m less of a woman? Or does that mean my sexual preference will change? And those are all no. It doesn’t affect those kinds of things. But yeah, if men end up having something similar then you know that there’s gonna be more research dollars put into it because the feminist in me is kind of like, well at least they’re gonna start researching it
Julie: That’d be good for the rest of us.
Paige: That’s fascinating, Julie. I had no idea that there’s sort of a cousin to this in men perhaps. Interesting.
Julie: Well, the thing about PCOS that we know if that it’s genetic and environmental so it’s passed down through families. I’ve talked to a lot of people, this is just clinical observation but, most of the people I’ve talked to they notice a pattern on the male side of their family so that’s why I’m like, there’s probably is one for men too because there’s a genetic side to it. And there’s also this environmental connection because of just how food has changed over the years and so people with PCOS have a susceptibility that’s different than other people to some environmental changes that are kind of interesting. But in the end, to put this all in perspective, like a nutshell here, is that PCOS basically with it’s genetic connections starts in the brain, specifically in the hypothalamus. And that’s where the hormones are made that end up getting disrupted with this condition and it ends up affecting like literally every part of a woman’s body. Because the hypothalamus is where our mood center is so mood disorders are really common like anxiety, depression, bipolar disorder, even ADHD or ADD or just some kind of attention deficit kind of differences are really common with PCOS. And then also because of this hypothalamus being like the hub of PCOS ends up affecting insulin is a hormone that ends up getting out of whack basically so it affects how a woman digests the food that she eats. So it affects for some women it ends up affecting what their body looks like and it affects like their energy levels or lack thereof and you know, so the whole body ends up being affected by it and most women what happens is that if they get diagnosed with it, they’re basically given a pamphlet or they’re just told like as the doctor’s walking out, Oh yeah you have this PCOS thing and just come back when you’re trying to get pregnant. And you know, they kind of just brush it under the rug and they don’t really say anything.
Paige: Or they say, here’s a very restrictive amount of carbohydrates you’re allowed to eat in a day.
Julie: Well yeah, I don’t like when I hear that either cuz basically the common practice if you google it or you even webmd it. The primary treatment for PCOS is weight loss and when I started seeing people with it, I really didn’t know what to do and I also was starting to really reject diets but when I looks through all of my training in PCOS which wass really small at that point, all I knew to do was help them lose weight. And so I did that and not only did it feel crummy cuz it was this like, this ethical kind of dilemma I was experiencing but it didn’t help anybody you know, people’s symptoms just got worst and they felt worse about themselves so it made me really look at some different ways to treat it and luckily there was a woman who had this network called InCYST and she developed this multidisciplinary network and training. Her name is Monika Woolsey and she’s a dietitian, basically retired from working with PCOS at this point but she was really into the endocrine system and the research behind it. Not only was she a dietitian but she was also an exercise physiologist so she just was really savvy and this was about 10 years ago that I got the training and what I found is that by treating the symptoms and also pursuing weight loss, made it so much worse and there’s ways to get to the core, like to get to the hypothalamus basically. You can’t cure PCOS but it can definitely heal what’s going on from the PCOS so then long term a woman can make peace with food, she doesn’t have to fight her body, she doesn’t have to pursue weight loss or cut out carbs. There’s ways you can do it that end up helping them actually feel better long term without the torture. So yeah, that’s one of my big messages for women, like if you have this don’t believe the hype. You can still you know, continue on your journey for food peace because we have this other, we have so many other options and I think things like weight stigma unfortunately have affected women with PCOS more than anyone else because it’s just slapped on there like, oh they just need to lose weight and that’ll treat it. Or even some people are told, like oh you’ve gained weight and that caused it which that’s totally false. No one caused their PCOS.
Paige: You can be any body size and have PCOS. That’s an important thing to know.
Julie: Oh yes, oh for sure. I’ve seen people in every shape and size.
Paige: Yeah, me too.
Julie: Ethnicity. I had one or more than one, I’ve had a number of clients that have like lighter skin and lighter hair color and their doctors will be like, no, it’s only people with, with dark hair.
Paige: oh! What?
Julie: Really? Like she could have dyed her hair first of all.
Paige: Right. Oh that’s funny.
Julie: I mean, yeah. It’s in everybody.
Paige: Ok, Julie, let’s talk about just to paint a picture cuz I’m kind of imagining, I’m hoping there are providers listening and sometimes I think just with the nature of medical care it can be really hard to have enough time to sit down and really hear someone’s story about what it’s like to live with PCOS like what, let’s highlight that let’s talk about what we’ve heard our clients say and especially you with all the deep dive you’ve done into this world. I just really want to paint the picture of what life with PCOS looks like for some and it’s gonna look different for every person but what to do want to say about that?
Julie: Oh my gosh, yeah there’s, everyone’s story is different but there are some tremendous like, patterns and themes and I love when women with PCOS get together and talk because then they’re like, oh my gosh, I’m not the only one that does this. And you know, when a woman with wakes up with PCOS everyday, she is usually sleep deprived cuz sleep disorders are super common and so usually they didn’t get a very good night sleep and already feeling kind of weird kind of craving and also not really not having any interest in eating because of the way insulin levels are already gonna be messed up when they’re waking up. And so for a lot of women with PCOS they don’t usually end up eating until later in the day because it’s just how their circadian rhythms for eating have ended up. And so because they’re so sleep deprived, so many end up relying on like coffee cuz they’re like, I need to get work done or have kids to take care of today so I need to do this. And what ends up happening then too is there’s like when they walk out into the world they’re feeling really unfeminine because of lots of hair on their body especially on their face and losing hair on their head. Feeling less feminine because of that and then for not everyone, but I’ve seen ranges of 60-70% of women with PCOS are women of size and so carrying a lot of weight around their midsection which for some women, not all of them, but for some women that’s a symptom, just a symptom that their insulin levels are high. It’s not something that they caused and so they’re walking into the world where they feel like defeated because they’ve probably tried and tried and tried to change their weight and what they end up trying to do are a lot of fixes that they’re told to do like cut out carbohydrates or cut their calories lower and what ends up happening to them is it ends up making cravings really, really like to the cellular level unbearable and so when a woman gets hit with a craving with PCOS and it usually happens around like 2, 3, 4 o’clock in the afternoon. And then again later at night it’s not just like how you and I will be like, huh that brownie looks good. It’s more like you have to eat that. Like it’s like a cellular level like their biology is telling them they have to eat it.
Paige: Well then we can talk about like about their reason why with that is the elevated insulin levels of their hyperinsulinemia
Paige: I have a way of explaining this but it’s not very scientific but it helps people to understand it. Do you want me to roll with it? And you can correct me.
Julie: Yeah. I’m sure it’s right.
Paige: Ok, I mean. It’s the general idea, it’s not accurate on the scientific level. So with a woman who doesn’t have PCOS let’s say she eats the equivalent of like 10 glucoses this is how I explain it. You eat 10 glucoses which is just carbohydrates broken down into its form that feeds cells. And the average woman might, might use 6 of those glucoses to feed the cells of the body and then keep 4 of it in the blood stream. To kind of keep the blood sugar levels where they should be because you need blood sugar, you need sugar in your blood at a continuous level like you don’t want to have zero.
Julie: Or you’d be brain dead. Yeah
Paige: It wouldn’t be good. But a woman with PCOS in that hyperinsulinemia what’s going on is that insulin is what brings the glucose into the cells and so when she eats 10 glucoses instead of getting you know, giving 6 to the cells, she might give 8 or 9 to the cells and then only have like 1 left over for her, for her blood. And then her body detects, oh know! Blood sugar is low, I must find something with sugar in it to eat. And it’s because that elevated insulin level got way too much glucose into the cells not enough still in the blood. So what that does is it really leads to an elevated feeling of I have to find sugar and I need it know and if I don’t get it, I might die. And that’s really kind of how it feels. What do you think? Did I do ok?
Julie: Yeah, and I you know the thing that is really, one of the hardest parts about specializing in PCOS is that the research is just not really there yet for us to understand exactly what’s going on but yeah, I mean, one of the things that I notice is that, or what I often talk about is how insulin like the doorman for the cell.
Julie: It’s trying to open the cell door and one part of research that is emerging that’s super exciting is that the doorbell to the cell maybe broken in PCOS and usually when the doorbell of the cell is broken, the body sends a signal and these secondary messengers, you know if you can picture these little messengers coming down to fix it. People without PCOS, it fixes the doorbell and then the insulin can work. Well there’s these secondary messengers are either defective or deficient or there’s something going on in that system and so then the body just all it knows to do is just send more insulin to like, help open the door more so there’s lots more blood sugar shifting around and there’s a lot more insulin and I think a lot of providers think of this insulin conversation just like how we talk about with diabetes and you know there’s some similarities because there’s talk about insulin but the hyperinsulinemia with PCOS is so much higher and that leads to some symptoms that are different and it leads to also like the insulin levels need to be treated before you do anything else. And especially, you know I know diets don’t work and if we lived in a place where society where someone invented one that actually did, like I’m not going to hold my breath on that but, if they, if there was one that was invented it wouldn’t work because the insulin levels are just so high and insulin is a growth hormone. It would just make the body like keep going through this process until insulin went down. And so there are no diets that work anyway so it’s kind of a moot point. But when someone tells someone with PCOS, well you need to lose weight. Well, no, you need to help her lower her insulin levels. That’s what the first thing you need to help her do, whether it’s through medication or through supplements and that’s where I always go first with people. It’s like, let’s talk to your doctor about medication or supplements and help your
Paige: Because it doesn’t matter how great your eating and sleeping and taking care of yourself.
Julie: Nuh-uh. It doesn’t matter
Paige: If your insulin levels are elevated, you are not going to be feeling well, functioning well. Right?
Julie: Well and you can search online, there’s people who do it but it’s like, there are people who like are able to lose weight but they’re not the typical, like you can’t use that as the outcome for everyone and also like there’s anorexia. Yeah there’s people who are good at that stuff and that’s called anorexia. You know, and I think one of the big parts of PCOS that is really frustrating to me is that basically women with PCOS are told to torture their body and practice anorexia. You know, we would call it in anorexia in a woman with a smaller body for sure. But women in a larger body with PCOS, they’re made to do it. And I just, I think there’s like this disconnect on why is it ok for them.
Paige: Ohh, totally.
Julie: Why do they have to torture themselves and we call it pathological in someone else.
Paige: That is a big problem.
Julie: And it’s not the same. It’s a really big problem and it’s weight stigma. You know?
Julie: You gotta get rid of it however you can but yeah so if there’s, [if] anyone’s a provider for people with PCOS understanding how the hyperinsulinemia is so much different and so much more biologically involved and it literally will drain the woman’s body so if a woman is told she needs to be more active with PCOS because being more active, you know, as humans I think we’re just meant to move and I don’t think we should do like no pain, no gain stuff but like joyful stuff, things that feel good and I would love for women to find something that was pleasurable for them and to move their body. But a woman with PCOS that has untreated insulin levels it’s like carrying around a bag of rocks, you know, they just can’t, it’s not the same you know. So somebody was like, it just feels like dead weight that I’m moving and I’m trying to move my body and so that’s why I’m like, just help them lower their insulin levels and I unfortunately hear a lot of providers who like, won’t provide fertility treatment or even help them treat insulin levels until they lose weight and that is like disgusting to me. I mean I’m like that’s super discriminatory, you know, and just knowing all this physiology, I hope that convinces some people to just do it a little differently.
Paige: I love it. So to continue on with the idea of painting the picture of Paige: I love it. So to continue on with the idea of kind of painting the picture, one thing we alluded to but didn’t say outright is that there are immense and very intense cravings associated with PCOS. I mean, you, you actually did say that. You said that outright. So she might go throughout her day feeling just compelled on just a cellular level toward the sugary simple carbohydrate type of food or just maybe food in general. And then on a mental health level what that does to a person.
Paige: Is it makes them feel like, gosh, what is wrong with me? Like why am I such a loser.
Paige: I mean they might say these things, I’m not calling these people losers.
Paige: But that might be going through your head like, gosh, I just have no willpower, I clearly need to make more rules, I continue to fail. You know, you know you go down that shame spiral pretty intensely.
Paige: Meanwhile they’re making more rules. Saying, ok tomorrow I’m recommitting, I’m not gonna do that. And you can see how this can be a recipe for an eating disorder. Right?
Julie: Oh yeah. It totally.
Paige: Where, I feel like a failure, I keep failing and I keep making more rules and I keep failing and then I just give up and binge on all the foods and you know, and then I recommit and say ok, I’m gonna be good, you know. And that…
Julie: Isn’t that so exhausting to think about?
Paige: So exhausting! Yeah.
Julie: So exhausting there’s so much shame and blame cuz again so many people think they caused this condition because of their weight and then they have these cravings and so when they give in, because they’re really just doing what their body is telling them to do. There’s like immediately a level of shame and oh geez, how did I mess it all up? And so, what I end up hearing from people that I talk to is that they feel like they’re constantly bouncing between dieting and not dieting or restricting and binging and it’s exhausting in itself but then that’s just on the outside. But inside their body, they’re feeling so much shame and blaming themselves for all of it which then ends up making mentally this just even like a deeper like rabbit hole in a sense. And then like from like a cellular level that also like, putting that altogether it ends up making their body more stressed so then it makes the all those other hormones even more out of whack.
Paige: Right and it makes harder to sleep.
Julie: Harder to sleep.
Paige: And then it makes it harder to get out of bed and because you’re kind of depressed and don’t want to start the day. Right? So there’s all these angles that you get hit with, with pressure and stress and anxiety around this and that you know, if we’re really talking about health that’s, that’s not healthy for you, you know?
Julie: No, no and I feel like there’s so many people who talk about you know, you gotta be, oh gosh what is it? More responsible and so maybe feeling a little ashamed will help the responsibility. And I’m like, no those are like diametrically opposed. You know like?
Paige: Shame does not really lead to action. It just leads to like discouragement.
Julie: No it doesn’t! Exactly it doesn’t lead to like responsibility and you know if people are thinking like a drill sergeant like shame is not gonna help with that. I mean that is something we’ve seen in research over and over again, we know that shame doesn’t promote health but women with PCOS because of the weight that’s associated with it I feel like are stuck because that’s all that science is telling them. Is just, well just keep trying harder just try harder like there’s a couple women that I know with PCOS who are amazing athletes and a little side note because of the high circulating testosterone women with PCOS end up having more dense muscles and you’d be surprised how many women with PCOS were like really amazing high school and college athletes. But I’ve worked with a few who you know, experience the PCOS and were really good college athletes and then it just got to the point that their body is just so depleted from the eating disorder behaviors and the PCOS like recommendations that their sport was no longer able to be done but then as we worked together and they were repleting levels and healing their relationship with food they got back to the sport and there’s a couple that I worked with that were like marathon runners and things like that and running like some 4 hour marathons. Ok which is really fast, ok.
Paige: That’s amazing.
Julie: Yeah and doctors are still telling them, well you just need to exercise more. And
Julie: have you thought about cutting out carbs?
Paige: Oh for crying out loud.
Julie: And there’s, that’s like one of the worst things you could tell an endurance athlete or anyone really but yeah so just keep pushing it in that same direction, even though like we really need to know what a person is doing and honestly I think part of the weight stigma that affects women with PCOS is that I don’t think a lot of health care providers, and I’m guilty of this too especially when I was in the beginning of my career, where I don’t think I believed people when they said they ate very little and they weighed more. I think I just assumed they weren’t telling me everything and I can remember being told that when I was getting trained. Oh yeah, people are gonna tell you that they only eat this much but they’re really eating this much. And but after 20 or 30 women with PCOS were like, look I’m only eating blank amount of calories which was really, really low and I’m exercising this amount. You know, they can’t all be lying and you know like?
Julie: There has to be something to this and honestly that’s the common story is like women with PCOS so many of them especially if they’ve trying for a really long time to treat it. They’re either eating dangerously low amounts of food, cutting out all, like certain food groups, or certain macronutrients and their bodies are sicker, they’re not healthier from it.
Paige: Kay so Julie I like to kind of anticipate what my listeners might be thinking and I just want to take a minute to anticipate someone who might listening and saying, ok well I was diagnosed with PCOS and I cut down on blank amount of carbohydrates and I just feel so much better. I lost all this weight and I’m just like my life has never been better, my mood, I’m, you know, whatever. Right? On and on and on like ok these crazy dietitians who are semi like anti-establishment of like, in terms of diet as the treatment as the establishment and or maybe a provider saying, like wait, how can this be that we’ve gotten this so wrong? In the medical community, maybe these guys are just crazy. What would you say to that?
Julie: Well, you know personal experience is personal experience and so there’s always going to be someone that can cut out something and it works for them. But all I know is the research and so far the research with PCOS in cutting out, I don’t know, how particular you are about saying certain nutrients but, in particular so let we know if you don’t wanna go there.
Paige: It’s ok, you can, it’s alright.
Julie: Ok. Good. So in particular it’s often recommended that women with PCOS cut out carbohydrates or sugar or both and either completely out or you know, really, really dangerously low. And when they research that backs that when you peel through the layers of it the research was only six weeks long or 12 weeks long which I know lots of people who can do some pretty quick fix diets for that length of time. And yes, women will often say that they feel so much better when they do it for 6 weeks or 12 weeks and there’s something about that 2 to 3 month mark where when research continues to go with that with PCOS cutting out carbs and sugars, and also things like gluten that was another one. Women often say that they felt so much better but at the 2 to 3 month mark for the majority it stops working like they no longer feel as energized and what it, what Monika Woolsey, the woman behind inCYST and all that training, I did the training with, what she has said was basically cutting out those things was like a bandaid and so in the short term it changed insulin levels because it was like, a stressor on the body and so for short term it did it. But when you look at it long term, it’s not going to where PCOS starts and honestly when I work with people I talk about proteins, I talk about fats, and movement and then carbohydrates because when you cut out carbohydrates it doesn’t lead to lasting change and when a person is actually no longer dieting and eating enough and feeling ok in their skin maybe they don’t love their body but like really trying towards respecting it and giving it enough food and then we’re working on bringing down insulin levels you know with medication or supplements or something. Once we go through all those steps, you don’t need to even like you don’t need to anything the carbs like they end up just being where they need to be and it’s different for everybody like some people just end up craving less or some people eat an amount that‘s like I guess what textbook diets [or] dietitian training you know 40 to 60% of your calories and it just ends up being really individual.
Julie: And so, I think focusing on those like cutting out certain things will not work long term for most people.
Paige: Ok, yeah.
Julie: There’s just gonna be that random one.
Paige: Just to follow up, right yeah. And if, you know what? If you are that random one, nobody’s nobody’s telling you to stop.
Paige: I mean do your thing.
Julie: No cuz I really feel like yeah, yeah, cuz I feel like with women with PCOS you are the expert of your body.
Julie: Just like anybody else. You know what’s best and so you are the expert and I want to help you to feel like you are the expert again. And so if that works for you, that works for you. You know?
Paige: Yeah absolutely.
Julie: As long as it’s sustainable, I could care less cuz that means you’re feeling better and you’re more yourself.
Julie: Less distracted by everything else.
Paige: but know that you’re definitely the exception if that’s you. One follow up question is what about the, the person listening who’s saying, PCOS runs in my family, I haven’t been diagnosed with it but I’m concerned I’ll get it so I’ll just go ahead follow this diet prescribed by an endocrinologist whatever as a preventative measure.
Julie: Hmmm well, it’s genetic so it’s kind of like any of those other genetic things, you know, you can do everything that’s quote on quote “right.“
Julie: And because of the chronic side of PCOS it’s always changing that eventually the symptoms would come out and we don’t know exactly how to treat it in that way to prevent it and a lot of the nutrition recommendations that I know to help most of the people I work with, they’re not necessarily going to harm someone else but yet I don’t, it would be really important I think to know if you have it or not. And also to know that there’s really no way you can cause it like, it’s not like you can eat a snickers bar and then the next day you have it. Same thing with diabetes you know, it’s not like
Julie: You can’t do anything to make it happen so I mean it’s so hard for me to be like just don’t worry about it but I don’t have PCOS myself in my family so it’s hard to do that. It could happen.
Paige: Well, well I think that your point is just you know, don’t, that’s not really evidence based.
Julie: Yeah, and well, also listen to your body let it, when it tells you something, it can let you know. And I feel like women with PCOS they don’t feel like they’re the expert of their body anymore because they feel like their body has failed them and I, as much as I in my privileged health, I mean I don’t have PCOS but what I’ve been able to gather over the years is that I think women with PCOS their body just speaks a different language than the rest of us. And so if you can look or if you just notice certain things, like there’s certain, if you notice a mood change or craving change or energy level change and if you can like lean into it and wonder why it’s there I feel like that’s a really great way to know if you in fact are starting to experience the beginning signs of PCOS and I teach that type of stuff to the women with PCOS that I work with. That’s like when you hear those symptoms, it’s really important to not ignore them or run away from them it’s really to say hello to them because they’re, that’s the way it’s trying to talk to you about your needs and what your body needs.
Paige: Love it. Yeah, that’s great. So Julie let’s talk about I know it’s very hard to talk about particular interventions one might take but however, if you feel comfortable kind of broadly talking about what, what are some steps someone with PCOS can take to kind of start navigating this process. What do feel comfortable sharing with that?
Julie: Oh I can share a lot for sure.
Julie: Some of the things I’ll share, I have a free road map, I can tell your listeners about it. It’s a free download.
Paige: Oh great! That’s awesome.
Julie: If they go to PCOSandfoodpeace.com, I have your first 3 steps towards food peace with PCOS and one of them is really just getting that scale out of our house, smash it to smithereens or give it to a friend to hold on to but stop using the scale as a measure of progress because that’s just not going to be something that is going to end up working long term for most people and it ends up making the body have less energy coming in to help with healing all the hormonal imbalance. It basically causes a lot inflammation in a woman’s body with PCOS and so the body actually needs enough calories to fight that system and so if a person is trying to lose weight and cutting calories or cutting whatever, it ends up making this chronic inflammation worse not better.
Paige: Yeah and that’s scary
Paige: That can be so scary and so hard so we need to acknowledge that that’s like definitely not, not an easy thing for someone to do but I think that’s a really great first step, like kind of like decouple your health from that scale.
Julie: Yeah and you’re right, I totally agree it’s like I said it’s like I’m going out to get a loaf of bread or something.
Paige: Oh no no! No you’re fine with how you said it. I was just thinking like wow, someone listening might be like woah that is hard to do.
Julie: So it’s hard and what I often do, I do a lot of bartering in my office. So I’m like well you know, if you’re still wanting to lose weight I’m wondering if I can persuade you to put the pursuit of weight loss on the back burner for just 3 to 6 months because what I have found is a
Paige: Love the bartering. Yes.
Julie: Oh yeah. It’s ok. And the wanting to lose weight, that can still be there. It’s just the pursuit of it. You know? And so..
Paige: Oh wait! Hold on. We need to talk about that. That’s so important. That’s so important! And that’s not something we talk about enough in this world, I think we’re so like, no I’m anti diet. Boom. We just don’t even think about weight loss but I think what happens sometimes is that we alienate people who are like, well wait a minute, I do want to lose weight, I do want to lose weight. You know.
Julie: Well it’s so easy for you and me to say we’re not women of size, you know?
Paige: Right. Yeah.
Julie: And so I’m like, course I can be this anti diet rebel and I can eat a cheeseburger and nobody’s going to bat an eyelash but the one thing I know, is that there’s no diets that work and I wish our world was more accepting of diverse body sizes.
Paige: Me too.
Julie: Cuz there are always going to be fat people so…
Paige: And it would make everyone’s lives better. Everyone
Julie: Yes, everyone and if we’re talking about PCOS, like I don’t care what size you are with PCOS if, if weight stigma was no longer a part of our culture and our society, then it would tremendously improve your health outcomes because all of the research money is going into losing weight with PCOS. It’s not fixing anything.
Paige: Well and the fear of fat is affecting your health. Right?
Paige: No matter who you are and, and I’m not, I’m trying to include everyone in this and I’m not trying to say, oh it’s just for the, it makes the thin people’s lives better. You know, I’m not trying to like always have that angle on this. I really believe that this is an important issue for all of us because I can’t tell you how many people sit with me in my office and say I’m just so scared of getting fat and that’s why I can’t beat this eating disorder, that’s why I keep going back to my addiction. My substance addiction. Right?
Paige: It’s, it’s a problem.
Julie: well I don’t, I can appreciate why someone would want to lose weight. And be hopeful that they would lose weight and I know that’s not always what we talk about but I consider myself like a partner on someone’s food peace journey. You know?
Julie: And when someone is in a larger body and is feeling the oppression constantly, you know I work with people who are getting their picture taken out in public, like they’re at the zoo or something.
Paige: Oh, yeah. That’s so much abuse.
Julie: Horrible, horrible violent acts every day just by walking around in their body that they live in.
Julie: And so you know? I can appreciate why they want to be smaller. I don’t think it’s the solution because I want our world to be more inclusive to them but I, they’re just not feelin it right now. And I think if I tell someone to stuff that down then it’s just gonna make it harder on them and it’s gonna provide more of a separation.
Paige: Yeah. They’re gonna feel alienated from this community that’s supposedly for them right?
Julie: Well yeah and I’m not gonna get it, I’m not gonna understand it on so many levels cuz I haven’t lived it but I wanna listen and so if I’m not open to that type of conversation then I’m going to be alienating them and you know, I always think back, I got training in mental health counseling, that was my master’s program. And one of the things they taught us about children in play therapy and stuff like that is that if you brought a child out into the room and, a room full of toys, and you said play with any of the toys in here. Except for that dirty sock in the corner, you can’t touch that, well they’re gonna wanna go play with the dirty sock. So like, if I’m like, you can’t talk about weight loss, they think about it.
Paige: It’s true. Practical parenting life too.
Julie: Yeah exactly.
Paige: I can vouch for that.
Julie: No, so let’s talk about it. Let’s put it out there, let’s be open with it, I’m always congruent and honest with like, I don’t want you to pursue weight loss, I accept you unconditionally and you know, tell me about your life so women with PCOS, this is their life you know, they’re constantly feeling the stress, like the physiological stress from oppression every single day.
Paige: Totally, yeah.
Julie: And so, yeah I think it’s important for us to listen to, and as providers that’s one of the best things that we can do is make sure you set aside time to not just go over like the nutrition therapy for PCOS but just this side of it. Like let’s talk about what it’s like to live in your body and it sounds silly but I feel like that’s really valuable.
Paige: So valuable. I agree.
Julie: Yeah and actually using that word reminds me that my student that I was telling you about earlier, she was writing a blog post about how women with PCOS their body is just as valuable and there was something about that word that resonated so much with our facebook group that people were like, I mean we’re just on facebook talking but like they were like crying basically because it’s exactly that’s exactly they feel invaluable because their body just feels so unfeminine and larger and they feel quote on quote “gross” you know and so we need to remember they need to be told that they’re valuable and part of that is just listening to their experience.
Paige: Yeah beautiful, beautifully said. I love it. So you were talking about your bartering in your office because we were talking about step one, right?