Is PCOS over-diagnosed? Why are we still asking the wrong questions about women’s health?

I love reading scientific literature challenging my assumptions and forcing me to step out of my comfort zone. Challenging the norms are a crucial part of scientific advancements, so when I learn about surprising PCOS theories, I try to remain curious.

There is a new article found here suggesting that the diagnostic criteria for PCOS is too broad, and this broad diagnostic criteria may be doing more harm than good.

As I read through this article I was deeply disappointed by the attempts to stretch a small amount of PCOS knowledge to make such a drastic assertion.

I am disappointed in the lack of PCOS research. If PCOS affected men’s reproductive health and quality of life, would there be more research?

Would there even be a fear that they are being over diagnosed? Not in a million years.

I cannot remember a time that the validity of men’s experiences was questioned, so I cannot answer begin to answer this question.

As with other health conditions, the diagnostic criteria for PCOS have changed over time. The most recent changes in diagnostic criteria include more types of PCOS and is partly responsible for the increase in PCOS prevalence.

However, since the change in prevalence since 1930s, there have been a countless number of environmental changes, such as changes in the food quality, pollutants, and lifestyle.

There is also a vast difference in the access to consistent healthcare for people of various socioeconomic statuses. The amount of changes that may contribute to a change in prevalence since the 1930s should not be understated.

Want to find a way to treat your PCOS without dieting?

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The authors of this article suggest that the increase in prevalence is largely due to an unnecessary over-diagnosis of PCOS. They argued that it might be best if people with PCOS are simply treatment without given a label. The authors argued that people with PCOS who seek pregnancy might benefit from knowledge of their ovulation status.

Is the author suggesting that people should only receive detailed information about their reproductive health if they are willing to have children? 

Regardless of their fertility status or interest in having children, people are of equal value. Their worthiness of knowledge is not dependent on their interest in getting pregnant.

The article argued that the main benefits for receiving a diagnosis were related to treatment. They failed to acknowledge the support people with PCOS may receive as a result of their diagnosis. Discovering communities of other people with PCOS may improve their quality of life and learn to better manage their symptoms. This may reduce the feelings of isolation about their differences in appearances and experiences.

Providing treatment to people with PCOS without sharing the PCOS label will reduce the likelihood of engaging in PCOS communities that oftentimes empower people with PCOS.

The article argued that a PCOS diagnosis will likely add unnecessary stress to people with PCOS.

I cannot help but see the authors’ worries about fragile women that cannot contain their emotions about their diagnosis.

The authors even argue that people log onto social media, absorb invalid information, and will overestimate the severity of their diagnosis. They fail to acknowledge that people seek PCOS information on social media because their doctors provide such little information about the diagnosis.

They also fail to acknowledge how little support people with PCOS receive from healthcare professionals. After neglecting to acknowledge these realities, the authors argue people with PCOS cannot and do not know how to decipher which information is valid, bringing them to dramatize the severity of their PCOS.

Rather than taking away the PCOS label, we should empower patients to learn how to seek accurate information. 

There is poor information about PCOS online. There is also poor information about almost every other health condition online. A clear distinction between PCOS and many other common health conditions is that people with PCOS do not get consistent and clear messages from healthcare providers.

People with PCOS are forced to do their own research and build communities of support. If they are inaccurately gauging the severity of their PCOS, I am sure the lack of support from healthcare professionals is a contributing factor.

There is not enough research supporting the assertion that providing a PCOS label to patients causes harm. The authors sited three resources as they suggested a label might cause harmful effects. Two of these articles did not even study people with PCOS, who have distinct experiences of infertility, miscarriages, and physical appearances that may benefit from the support they can receive from having a label. The third article had a small sample size that did not specifically study people with PCOS. They only asked participants to imagine they had PCOS symptoms.

Learning more about PCOS has provided researchers with more questions, including questioning the diagnostic criteria. The authors of this article argued not all people with PCOS would benefit with the PCOS label.

There is inadequate research to support their argument. In a general sense, the questions around the health benefits that result in labeling diseases remain unanswered.

I am confused as to why a topic that is so under-researched and novice should be applied to a disease like PCOS that has so many unanswered questions. 

I find myself asking if PCOS were a men’s disease, would such assertions be made? Would these assertions include arguments of fragility and dramatization about patients? I cannot help but think that the narrative would be different if PCOS was not a women’s issue.

Let’s continue this conversation in the Facebook PCOS Support Group. Click here to join! What’s your reaction to this? Do you think PCOS is over-diagnosed? How did you experience reading the medical analysis then Kimberly’s reaction?

Resources

Copp, Tessa, et al. “Are expanding disease definitions unnecessarily labelling women with polycystic ovary syndrome?” Bmj, 2017, doi:10.1136/bmj.j3694.

The Love Food Podcast Episode 52 with Rebecca Scritchfield

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Do you struggle with perfectionism? Have you tried to ditch the diet, but still find yourself obsessing over eating “right?” Do you have a hard time letting go of the weight loss goal, even if you are far into your intuitive eating journey? Does food feel like an all or nothing experience for you, either eating for pleasure or restricting for weight loss? Listen now for some advice on how to work through these issues.

Subscribe and leave a review here in just seconds.

Key Points:

  • It’s National Dieting Month! Be sure to listen in on all the bonus episodes this month to help you avoid the excessive diet talk and fat-shaming gym membership chit chat!
  • Sometimes we can go into certain food restrictions, such as vegetarianism and veganism, with the best of intentions, but they can quickly spiral out of control and feel obsessive.
  • Weight loss is seductive!
  • How do we relate to food in a neutral, balanced way, rather than one that feels like an all-or-nothing, binge restrict cycle?
  • Perfectionism can stand in the way of feeling safe with food and trusting your body.
  • Rebecca Scritchfield joins for some more insight on this topic, and a conversation on body kindness!
  • Diet culture is toxic!! We all need some love and compassion when trying to tackle it.
  • If we’re trying to put ourselves first, embrace self-care, and embody self-acceptance but we have not yet fully accepted our bodies just as they are, this can lead to a common but difficult tug of war: to diet, or to drop the diet and plunge headfirst into body acceptance.
  • “Fears and anxieties can lead to desperate decisions and actions.” – Rebecca
  • How do we strive for a healthier, happier life in a holistic sense, rather than one that focuses on our size or shape?
  • Feeling stuck between dieting and self-acceptance is draining… how do we break out of that? Rebecca weighs in!
    • Acceptance even in the face of anxiety and discomfort.
    • Space to reflect and engage in compassionate and rational thinking.
  • “Perfectionism means unachievable!” – Rebecca
    • We must be able to question why we are holding ourselves accountable to something that we know no one else can achieve.
    • Practice setting up boundaries around perfectionism and asserting that it does not work for you!
    • STOP allowing it to control your choices.
  • Can we accept ourselves and love ourselves, but still hold weight loss as a goal?
    • If we sit with that desire, but choose not to pursue specific, unhelpful weight loss goals, and instead just bring those feelings along for the ride, eventually that desire will work itself out in favor of self-care and self-love.
    • Take the action that you would take if you were ALREADY the person you “want” to be, and take steps to enjoy life!
    • Eventually, the weight loss goal becomes less important just by doing the things that help you to love yourself more.
  • Diet culture is everywhere, and NOT engaging in diet culture is a huge job!
  • Acceptance and Commitment Therapy (ACT)
  • Rebecca’s new book, Body Kindness!!
    • Guidance and flexible tips to engage in self-care in all aspects of your life.
    • Discussing the benefit of both good AND bad emotions!!
    • How to we set up sustainable, good goals?
    • The benefits of connection, compassion, and kindness… how do we engage in a meaningful life NOW?
    • A special discount for Love Food listeners available for a limited time: order Body Kindness and get 25% off with the code KIND at this link https://www.workman.com/products/body-kindness

Show Notes:

Do you have a complicated relationship with food? I want to help! Send your Dear Food letter to LoveFoodPodcast@gmail.com. 

Click here to leave me a review in iTunes and subscribe. This type of kindness helps the show continue!

Thank you for listening to the Love, Food series. Give me feedback via Twitter @EatingPermitRD.

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This episode is sponsored by my friends at Green Mountain at Fox Run.
A special promotion for Love Food listeners:
Join Green Mountain at Fox Run for their Binge & Emotional Eating Weekend Intensive (January 20-22, 2017). Participants will explore personal barriers and how to counter them with evidence-based strategies to prevent eating in response to stress and emotions. For more information or to register, please visit https://www.fitwoman.com/therapy-services-eating-disorder/offerings/binge-eating-intensive-weekend/.

TAKE TIME TO INVEST IN YOU.

It’s time to shine the light on yourself and make YOURSELF the priority. Here at Green Mountain at Fox Run, we’re all about embracing and supporting yourself through self-care. Through powerful tools such as mindfulness techniques, stress management skills, and movement that is customized to your body and fitness level, you’ll learn to practice self-care in your daily life. Visit https://www.fitwoman.com/ for more information.

The Love Food Podcast Episode 44 with Fiona Sutherland

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Do you have a hard time eating without worrying about “good” and “bad” food labels? Do you feel like food is your enemy? Do you feel overwhelmed by all the nutrition info out there? Join Julie and fellow dietitian Fiona Southerland to start unpacking this issue!

Subscribe and leave a review here in just seconds!

Key Points:

  • Our bodies have lots of different methods, including our brains and our intuition, to help them figure out what they needs in terms of food in order to feel satisfied and full.
  • Healthy eating includes PLEASURE!
  • Fiona Southerland joins to help answer this week’s letter!
  • Self-compassion and kindness is super important when we confront our beliefs related to food rules.
  • We are not alone… so many of us feel this way.
  • It’s impossible to follow every single food rule!
  • The more we try to follow rules and live in our heads (intellectualizing!), the less we listen to our body and intuition (innate wisdom!).
  • There are so many crazy things going on in the world… why are we focused on whether or not something has gluten in it?!
  • Even the professionals don’t know everything about nutrition… it’s confusing!
  • When we try to control things that weren’t supposed to be controlled (like our food intake) we go haywire.
  • Our culture is confusing health with our appearance (like our body shape).
  • Our expectations about the female body inform our opinions of health.
  • Fiona’s “Build up and let go model:” build up our skills of inner awareness, which will allow us to let go of rigidity.
  • We need skills related to our intuition in order to drop the food rules and stick to it!
  • How do we find a stable place outside of food when we feel out of control with our body?
  • The wise parts of us are not perfect!
  • Intuitive eating can become another set of diet rules… don’t let it!
  • The foundation of intuitive eating is unconditional permission to eat.
  • We must help people build long-term resilience against the cultural crap! Self-care and personal connection are super helpful for our wellbeing, and we have to return to our well of wisdom and call upon a stable place of self-compassion to take care or ourselves and move past cultural expectations.
  • Intuitive eating is s different way of BEING with food. It’s peace. But it’s scary, and that’s okay!
  • Perfectionism and the all-or-nothing approach can get in the way of healing around food.
  • Fiona says, “Reassurance without assurance”… we will support you through the confusion!
  • HEALING YOUR RELATIONSHIP TO FOOD IS MESSY!! (Cultivate the mess!)
  • Although knowledge is important, it can take us away from living. It’s time to slow down and hone in on our intuition.

Show Notes:

Do you have a complicated relationship with food? I want to help! Send your Dear Food letter to LoveFoodPodcast@gmail.com. 

Click here to leave me a review in iTunes and subscribe. This type of kindness helps the show continue!

Thank you for listening to the Love, Food series. Give me feedback via Twitter @EatingPermitRD.

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This episode was sponsored by my friends at Green Mountain at Fox Run.
A special promotion for Love Food listeners:
VIP Upgrades at Green Mountain at Fox Run
On stays November 6 – December 17, 2016
Green Mountain at Fox Run is offering special upgrades for one+ week reservations through the end of the year. Receive a free room upgrade and $250 credit towards amenities and professional services.
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Stop the Yo-Yo! Diets Behind Weight Cycling Negatively Impacts PCOS

Have PCOS? You can make peace with food too. Let's navigate this.
Have PCOS? You can make peace with food too. Let’s navigate this.

This week’s blog is doing cartwheels around the possibility of PCOS and food peace. This is the third of five posts. I hope you find this information invigorating and revolutionary. If you have PCOS, please know you don’t have to punish yourself anymore. You can find health without diets!

Weight loss, Weight Regain Hurts Health

PCOS weight loss often includes drastic measures that are impossible for 95% of the population to continue. Because of our human physiology, weight loss is followed by a period of rapid eating and weight regain. Have you ever lost weight only to regain more? I have heard many women with PCOS describe losing 50 to 100 pounds only to regain 100 to 150 more within the next few years.

If this is your history: it isn’t your fault.

On behalf of medical and health science, I apologize that we gave you the wrong solutions. We don’t have many good ones yet, regretfully. We do know that continuing the weight loss weight regain cycle will only make you sicker.

Because weight regain is the rule not the exception, weight cycling studies–the research word for yo-yo dieting–come in handy. Weight cycling studies suggest this process ends up making a body with more inflammation and higher insulin levels 1, 2, 3, 4. Remember, PCOS already includes astronomically high insulin levels. Why contribute to this?

Even more, the higher insulin levels rise, the more intense the carb cravings. When I say craving, I don’t mean a lurking thought. I mean an experience where every cell in your body screams: EAT CARBS AND EAT THEM NOW! Carb restricting may seem like a good idea yet please reconsider. We have neuropeptides that release messages to cells when carb or calorie intake is low or perceived to be low that further enhances this screaming. Carb abstinence only enhances binges. This hurts in 3 ways:

  • Further increases insulin levels from high carb binges
  • Places the woman at higher risk for eating disorder pathology
  • Contributes to weight cycling insulin and inflammation increases

If you have PCOS and want to lower insulin levels, do not diet. Don’t even think about it.

Dieting + PCOS can promote eating disorders

Have PCOS? You can make peace with food too. Let's navigate this.
Have PCOS? You can make peace with food too. Let’s navigate this.

This week’s blog is doing cartwheels around the possibility of PCOS and food peace. I hope you find this information invigorating and revolutionary. If you have PCOS, please know you don’t have to punish yourself anymore. You can find health without diets!

Dieting, PCOS, and Eating Disorders

I am primarily an eating disorder behavior expert. My training in nutrition and counseling helps me understand the root of client pathological connections to food. Although not always understood, eating disorders have the highest fatality rate of all mental illnesses. Eating disorder research is providing answers to the question, “Why!?!” The textbook eating disorder recipe: genetic predisposition, negative body image, and a change in eating habits (here’s an article explaining this).

Negative body image occurs frequently with PCOS. Remember that facial hair, balding, and fat tummy? Not exactly fitting cultural ideals of beauty. Combine that with weight stigma and most women with PCOS dislike their body. Of course they will try everything to change it. Why is it so hard though?

Most women with PCOS have insulin resistance (IR). Of important note, insulin levels are tremendously higher in PCOS compared to folks with type 2 diabetes. This means women with PCOS feel more chaotic from IR. Insulin is a growth hormone so when it is high a person’s weight will not go down unless doing something drastic. I refer to this as extreme dieting and won’t go into details. I do witness women with PCOS losing weight from these methods yet the weight always comes back. This sucks yet what is even worse is it starts diet → binge cycle.

And an eating disorder is born.

From here, genetics take over whether it becomes anorexia nervosa, bulimia nervosa, or binge eating disorder or subclinical disordered eating. None are health promoting. Remember, eating disorders have the highest fatality rate of any mental illness. We don’t know a person’s genetics by looking at them. We do know women with PCOS typically have the other 2 parts to the eating disorder receipe: negative body image and change in eating habits.

Numerous twin studies suggest the more a person diets the more disordered their eating (article explaining many here).

Why are we prescribing a method (diets), that has no scientific proof to work and can cause a mental health condition with the highest fatality rate?

Keep asking this question because we must find a better solution. Women with PCOS: you deserve a better one.

Click here to see Part 3 of this series: Stop Yo Yo Dieting to Help Treat Your PCOS