This post was adapted from episode 18: "Managing PCOS and Preventing Disordered Eating" of the
Nourished & Free™ podcast.
Women struggling with Polycystic Ovarian Syndrome (PCOS) are often told to diet, lose weight, get on birth control, and then come back later when they want to get pregnant. As a woman with PCOS myself, I've found that this is the worst advice we can possibly receive. I wanted to dive deep into PCOS and disordered eating with specialist, Megan Miller, MS, RD, LD. Read on for our conversation about all things PCOS and key notes about the correlation between PCOS and eating disorders/disordered eating.
PCOS and Birth Control
When I first consulted with an OB-GYN about my irregular periods + mysterious weight gain, I shortly received a PCOS diagnosis via ultrasound, I was told to start birth control to reinstate my period. Unfortunately, when it comes to PCOS and birth control pills, the pill is not that helpful for managing PCOS symptoms. Forcing a menstrual cycle through a pill only masks what is hormonally going on underneath, it does not solve the root issues.
Does birth control make PCOS worse? Maybe.
If being on the pill is delaying a diagnosis of PCOS because the symptom of an irregular period is missing, then the PCOS will continue to be unmanaged.
If a PCOS diagnosis has already been made, birth control is not a solution - it is merely a bandaid for the 1 symptom of irregular periods. There are still many other PCOS symptoms that need to be managed, and the root cause corrected. PCOS and birth control simply don't make a whole lot of sense.
I would love to know your thoughts on birth control [pills] with PCOS management.
Megan: "Yeah, I think with PCOS from working with clients, one of the hardest parts is if you are not in the phase of life where you're trying to start a family, you're dismissed and told to come back when you're ready to start a family or when you're having trouble starting a family. It’s really unfortunate for most people because even if you never want to have a family, you still want to address your PCOS symptoms because there are a lot of other factors that PCOS contributes to besides just fertility....
The problem is, I feel like birth control is just a band-aid. A lot of women are put on birth control in their teen years or early twenties because the doctors want to jump-start their period, but then they have a false sense because the period on birth control is not a true period. All of the symptoms that are masked on birth control are still gonna be there once they're off birth control.
For a lot of people at a young age, they don't even get the PCOS diagnosis before being on birth control. So, they come in at 16, they're not having a period or the period is super irregular and [the doctor will] put them on birth control to regulate it. Then 10 years down the road, they are trying to start a family and they realize [they’ve] had PCOS this whole time and it's gonna take years to undo everything that the birth control did...."
Symptoms of PCOS While on Birth Control
Birth control pills may make it difficult to truly identify if PCOS is present because we no longer can tell if an irregular period is happening. This is why I recommend managing PCOS without birth control. However, it's not impossible to note symptoms of PCOS while on birth control. Some other symptoms include but are not limited to:
Unwanted body hair/facial hair
Unexplained weight gain
Intense carbohydrate cravings
Low energy due to low levels of B12
What are some other symptoms women can identify that could potentially be pointing to PCOS, even if they're on birth control?
Megan: A lot of people with PCOS experience unwanted body hair… facial hair or on your side, stomach, and just more [hair] than you would expect. Sometimes [it’s] to the point where they need to shave their face. That can be a really big indicator that testosterone levels are higher than normal.
Acne can be a big indicator, [and] a lot of women deal with a [drastic] change in their body type… as far as what it what it looks like and that can be an indicator. [Other indicators] include intense cravings for carbohydrates. So there's actually several different things besides a missed period or irregular periods that can indicate something else is going on hormonally.
Weight and PCOS
For me, I had the 'lean' type of PCOS. Meaning, I wasn't clinically considered overweight. I did have unexplained weight gain, but it didn't put me into the BMI categories that providers love to reference.
So why are we always told that the solution to PCOS is to lose weight? It just doesn't add up.
When it comes to weight and PCOS, we need to look at the whole person. Weight loss is not necessarily going to improve symptoms.
Being an expert in the PCOS space and also having your understanding of weight and health and disordered eating, what is it like to take on a client that has this belief of ‘I just have to lose this weight in order to fix my PCOS’?
Megan: "It’s really really hard. A lot of women are told to just lose the weight and everything will be fine. [You may] even be told your PCOS could be cured if you lose the weight (which is a red flag if any health provider tells you that your PCOS can be cured. Find a new [provider] because there is no cure). I feel like telling a woman that has PCOS to lose weight and just go home and diet is like telling someone to climb Mount Everest with no training. It's not that simple and with how much our society values thinness and smaller bodies, don't you think these women are [already] working towards that because they know they'll be more accepted? [My clients] come to me super defeated… There aren't a lot of resources for PCOS. [I work] to redirect what health looks like for them....
[I try] to show them that health is more than just one number and that you could lose X amount of pounds and nothing can change, especially if you're doing it in a restrictive way. Your body is not going to feel safe to reproduce if that's what you're you're looking for.
And women in smaller bodies that have PCOS have a harder time getting it diagnosed because providers believe if you're not in a larger body, there's no way you could you could have PCOS.… you can have PCOS in a small body, you can have PCOS in a larger body."
What Causes PCOS?
I remember getting my PCOS diagnosis. My world came crashing down. I of course immediately ran to Google. Everything told me that I was going to have diabetes someday. I was so frustrated. Up to that point, I had tried everything in my power to not be the person who gained a lot of weight and developed diabetes. The truth is, I had a very disordered relationship with food and my body at the time of that diagnosis. Which later led me to question, can eating disorders cause PCOS?
PCOS and eating disorders are related (more on that soon), but as far as we can tell eating disorders are not the cause.
What have you found is the latest research on what could be a contributing factor or cause towards PCOS?
Megan: "I would love if more research was done on [PCOS]. The funding for PCOS research is very minimal, which is unfortunate because it affects 10 to 15% of women, and that's probably underdiagnosed.
I would say genetics is something we're seeing a trend in. So if [your relatives] had PCOS, you're potentially at an increased risk. There are some environmental factors that researchers are leaning towards, but unfortunately we don't have a great answer for why some women have PCOS and why some don't.
Something interesting is that [formal diagnosis of] PCOS came about in the last 28 years or so, [therefore] our parents generation may not even have known they have PCOS. They might have no idea because it wasn't really a thing. So trying to see that genetic factor can be hard because we don't have this formal diagnoses in previous generations."
Links between PCOS and Eating Disorders/Disordered Eating
PCOS and eating disorders have a strong correlation. Women with PCOS are shown to be at a higher risk for developing an eating disorder. This could be for a few reasons:
Women with PCOS are...
Told to lose weight
Have increased cravings for carbohydrates
Are insulin resistant, making carbohydrate metabolism difficult and further frustrating them, leading to inappropriate compensatory behaviors
Attempt to lose weight with restrictive eating, which can lead to binge eating.
What is the link that you've been seeing with disordered eating and PCOS?
Megan: "Unfortunately there is a big correlation between PCOS and eating disorders/disordered eating. The latest statistic is you’re six times more likely to have an eating disorder if you have PCOS because of…the recommendation to lose weight.
....Usually they [end up] restricting and trying to basically starve themselves to cut calories and then that leads a lot of times to bingeing at some point because of those intense cravings that their body is needing and wanting.
For a lot of my clients we start with just simply eating and trying to just show them that your body deserves food and your body is going to function better if it's eating regularly. Carbs are demonized regardless of PCOS, but especially in the PCOS world. When I tell [clients] their body prefers carbs and your brain needs carbs to function, they're just like 'what? no one's ever told me that I'm allowed to eat those types of foods because I'm just told I need to lose weight."
How Many Types of PCOS Are There?
There may be some reason to believe there are different types of PCOS. Let's hear Megan's thoughts on this:
I'd love to hear your thoughts on whether there are different types of PCOS?
Megan: "We are learning more there are different types. Some women with PCOS don't suffer from insulin resistance. Now I would say the majority do, but a lot of times, if we have lean PCOS (which is a different type in a smaller body), you may not be dealing with as much insulin resistance as somebody might be in a larger body that has PCOS.
Testosterone can be a driving factor for their symptoms, [or] the driving factor is the insulin resistance which is causing the hormone changes. What type [the client] is working with can alter the interventions."
PCOS and Keto Diet Success
Is the keto diet helpful for PCOS? Some suggest it is due to a small link between diabetes management and the keto diet. However, if we think logically about this, of course removing carbohydrates from the diet improves insulin resistance... there are no carbohydrates to process! That does not mean it has fixed the insulin resistance. We need to truly reverse insulin resistance with proper lifestyle changes that are sustainable and healthy.
One of the most I-want-to pull-my-hair-out moments is when somebody tells me they have PCOS and that they are going to do keto to help it.
Megan: "It's the worst. [For exmaple], the keto flu. Why [be] on a diet that makes [you] feel so terrible?
I feel like an interesting thing too is a lot of women with PCOS complain of brain fog and when we are depriving our brain of carbohydrates, it's not going to function at its peak. When they implement carbs, even for a few days or a week, they feel so much better and their mind is much more clear and they're like that just is mind blowing to me that it was as simple as, feeding your body the food that it's wanting."
Dairy and Gluten Free for PCOS
Popular PCOS influencers such as Tallene Hacatoryan (@pcos.weightloss) state that eliminating gluten and dairy from the diet will help women with PCOS lose weight. This might be more harmful than helpful as there is no valid research showing that going gluten free / dairy free is helpful for PCOS.
Do you think that it's possible that being dairy and gluten free for somebody might help their symptoms?
Megan: "There's no valid research that [GF/DF] is helping with PCOS.
I truly believe in body autonomy so if [a client] wants to try that for [themselves], I will support [them] but there has not been significant, large-scale research that going dairy or gluten free can help with PCOS. There are some smaller studies that show that dairy can maybe help with acne. But not directly to PCOS symptoms or increasing fertility and things.
When you lose both [gluten and dairy], it can be really hard to find things that you enjoy eating. It really increases your risk of disordered eating. It can [also] be a coping mechanism of 'I'm just trying to improve my health, but really I'm just engaging in disordered behaviors.'"
Does Stress and Cortisol Worsen PCOS Symptoms?
Do you find that high amounts of stress and cortisol worsen PCOS symptoms?
Megan: "Yes that is definitely a thing that needs to be a heavy priority with PCOS management is stress levels. With PCOS, you're going to have naturally higher cortisol levels which is your stress hormone. The more we increase stress, the harder it is to manage things like inflammation, hormones, or cravings.
I see that a lot with exercise and PCOS. [If I am] told to lose weight, [I might] go do really intense exercise every single day of the week. Exercise is a natural stress raiser for your body and that's normal and it's fine. But with PCOS, if you don't give your body time to come down from that stress and you're doing back to back intense workouts on the daily, it's actually causing more harm.
[Managing stress] is one of the big factors that I don't think a lot of women understand when coming to see me is that we're going to focus a lot on stress because that's really going to domino effect to everything else. As the dietitian, people kind of expect they're going to come to me and get a calorie count, a meal plan, and be told to not eat X, Y and Z. Well, [intuitive eating dietitians are] actually opposite of that dietitian. We're going to look at everything else: sleep, movement, stress. We will look at nutrition, but will not be giving any type of restrictions or calories or things to follow."
Supplements for PCOS
There are lots of supplements for PCOS out there. So which are the best supplements for PCOS?
What are your favorite supplements to recommend for your clients?
Megan: "I always recommend getting some baseline labs done [first]. If you're on birth control, I recommend getting off birth control if you're in a space you can do that, and then getting labs done because the labs will not be valid. [Labs include] Vitamin B12, vitamin D, thyroid panel, lipid panel.
Most women in general are deficient in vitamin D, but especially with PCOS and the thing that's interesting is the normal range for vitamin D is 30 - 100, which is so large. So you could be normal but your level is 32. We want to be optimal, [more like] 50 - 80. [Vitamin D] can directly correlate with mental health improvements.
Zinc and magnesium are two big ones that [I] have seen improvement [from] because women with PCOS are also [at an] increased risk for sleep disorders.
A great PCOS-only marketed supplement that I found is Ovasitol, a powder and it is a perfect combination of 40:1 myo-inositol and D-chiro-inositol. You can put it in coffee, water, [or] oatmeal. It helps with all of the things that women with PCOS struggle with so can improve ovulation, egg quality, intense cravings, [and] insulin resistance. If you're looking for something, start with that and then go from there.
Women come to me on 15 different supplements and some of them are doing the same thing or they have the same thing in them, just different variations of it. You don't need to be taking 10 supplements a day... Look at the ones that actually are going to benefit you."
I've seen on social media some marketing about an androgen blocker. What are your thoughts on that?
Megan: "If you have had your labs drawn and done and you get a panel done [and] find out your testosterone and things like that are super high, I definitely think it's worth a shot. But I would recommend from a reputable source because there are tons on the market. Our supplement industry is not regulated. So you just want to make sure that the supplement you're taking is third party tested…making sure the brand you're taking is reputable as well."
Next Steps for Those Struggling with PCOS and Eating Disorders/Disordered Eating
One of the most important things you can do if you struggle with PCOS and disordered eating is hire a nutritionist for PCOS, one who is also well versed in disordered eating/eating disorders.
What would you say to somebody who is struggling with PCOS who is feeling really lost and defeated, and who was told to just diet and exercise because their weight is the issue?
Megan: I would say give yourself some grace first. This is a heavy diagnosis that comes with a lot of emotions and it comes with a lot of symptoms that [most] people don't have to deal with. Try to accept it, but also to find providers that are gonna work for you not against you.
Try to find an OBGYN that is going to help you regardless of your fertility status. Seek out a dietitian that is weight inclusive [won't base your health status around your size] and specializes in PCOS. Seek out a therapist to help with some of the body image stuff. Try to find a support team to advocate for you and if you can't find one, keep advocating for yourself.
I would just like to hone in [that] PCOS is important to manage…and that you deserve care regardless of the fertility status. Start whenever you get the diagnosis... If you're waiting until [you plan to start a family] to actually start correcting the hormone imbalances, that's the worst advice ever that a doctor can give.
More about Megan:
Megan completed her Bachelor of Science in Nutrition from Western Kentucky University in 2016. She then went on to complete her dietetic internship through Morrison Healthcare, while also completing her Masters of Science in Nutrition from the University of Southern Mississippi in 2018. She is now a Health at Every Size Registered Dietitian, based out of the Indianapolis area. She specializes in disordered eating, eating disorders, and PCOS. Throughout her career as an outpatient dietitian, she has watched women struggle with failed diets, obsessive food rules, and poor body image. Her goal is to break this cycle and help women to live the life they deserve.
To get on the waitlist for a PCOS and intuitive eating support group with Megan, reach out to her at firstname.lastname@example.org
Follow her team @collab.counseling