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A Dietitian's Perspective: PCOS dietitian with lived experience - I have PCOS!

Getting Diagnosed with PCOS

Some sources say 6-10% of females worldwide are affected by Polycystic Ovarian Syndrome (PCOS), while others claim it’s an even larger 9-18% of women. No matter how you slice it, PCOS -- a condition typically marked by menstrual irregularity and symptoms of elevated androgen (or “male”) hormones -- is the most common cause of female infertility, and it’s prevalent all over the world.


Adrienne Inger with her dog

We don’t understand everything behind what causes PCOS just yet, and there is still research to be done. But what we do know is that a genetic link exists. In other words, no, it’s not your diet. And if you have PCOS, it’s not because of anything you did or didn’t do, either -- You didn’t cause this condition. Rather, it’s likely you inherited it.  

And although this condition is pretty common, it seems that making a diagnosis would be  fairly routine for healthcare professionals. However, a recent study from the University of Pennsylvania shows that for over ⅓ of women, it took more than two years and three healthcare professionals to diagnose.

This does not surprise me however it does make it incredibly frustrating and sad.  I remember being thirteen and expressing concern to both my mother and primary care physician that I wasn’t getting my period like the rest of my friends. I also remember feeling hyper-conscious about my bikini line and its high-maintenance upkeep, as well as the acne that persisted no matter how many visits to the dermatologist.  Despite all of this, my diagnosis only came eight years later, at the age of 21.  I hear similar stories from the women who come to see me in our nutrition practice all the time. 


Here are the common signs/symptoms of PCOS

-Irregular periods

-Excess hair on face and body

-Acne

-Thinning hair on head

-Weight gain or difficulty losing weight

-Darkening of skin

-Skin tags

 

*Symptoms vary considerably from person to person. Many women have some, but not all of the symptoms listed above.

In addition, the majority of women diagnosed with PCOS have insulin resistance, experience weight struggles, have trouble regulating appetite, and have high blood lipids. Anxiety and depression, sleep apnea, hypothyroidism, diabetes, cardiovascular disease, and eating disorders are also common, and this is not an exhaustive list.

It’s a complex condition.  


Treatment options

The most effective treatment programs for women with PCOS are multifaceted,  and include:

- stress management and support

- pharmacology 

- movement

- non-restrictive nutrition

PCOS and diet

Physicians who tell you weight loss and diets are a necessary part of treatment may not fully understand the complexity of PCOS and its effect on weight.  They may also not be aware of the research that shows dieting to be a predictor of weight gain in the long-run. Furthermore, losing weight is not a behavior you can just engage in. Rather, it’s an outcome that can result from engaging in some different behaviors -- things like seeking and receiving judgment-free medical care for starters; but also regulating sleep and stress, practicing joyful movement, and cultivating a healthy, nonrestrictive relationship with food.

While the internet runs rampant with personal “success stories” and “expert advice” to strictly limit carbs on paleo or keto diets -- I can assure you, it’s a recipe for disaster. First, having a healthy relationship with food and your body while following any kind of diet or “lifestyle” plan is a lot like winning the lottery. Is it possible? Sure. Is it likely? Not even close.

In fact, dieting often leads to binges and other disordered eating behaviors. Restricting calories, carbs, or other foods and food groups while having elevated insulin levels like we see in PCOS changes brain chemistry and leads to intense cravings, particularly for carbohydrates. Many women describe this effect as a having a big “sweet tooth” that makes them feel out of control.  

 

Speaking of which, you’re probably worried that if you let your body decide when, what, and how much to eat with unconditional permission and NO food rules or diets, you’d lose control, overeat, or gain weight as a result.  I hardly  ever come across a client who isn’t a little concerned or afraid at the thought. However, making this shift can free up mind space, leaving room for you to focus on getting the kind of multifaceted care you actually need, which can ultimately lead to improvement in a number of PCOS symptoms, including reduced cravings and improved appetite regulation.


If you’re looking to work with a dietitian, look for descriptive terms such as “non-diet” and “intuitive eating.”   If PCOS experience is also listed, that’s even better.

 

Finding healthcare professionals who specialize in PCOS can be challenging.

But having a little information under your belt will go a long way! You may want to check out our PCOS Nutrition page to learn more about our approach.

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