PCOS and the Pitfalls of Self-Diagnosis

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I regularly get emails from women who have, through an Internet search, found a cluster of symptoms that sounds like them, and who have diagnosed themselves with my specialty, polycystic ovary syndrome (PCOS).  The Internet has been both a blessing and a curse for healthcare in this regard.  I have worked with many women who could not get the proper diagnosis—and therefore care—for the problem that plagued them.  Having access to information outside of one’s physician has allowed them to advocate for themselves.  On the flip side, I have seen women deny themselves the care they deserve by not using Internet information as they should—in conjunction with a treatment professional who can give them the help for the right problem.

Using PCOS as an example.  According to the Internet, you may have PCOS if you have trouble losing weight, skin issues, irregular menstrual cycles, or mood swings, among other symptoms.  And if you have PCOS, there is an army of naturopaths, acupuncturists, dietitians, physicians, and personal trainers out there ready to fix your problem.

If you’ve struggled with your weight, and you have been chided to lose it every time you HAVE gone to the doctor, chances are you drag your feet when it comes to making appointments.  Or, if you’ve reached out for help, and not been taken seriously, it can feel like there’s no point in trying yet one more time.  I hear these stories every day, and I understand your reticence.  I also speak from the experience of having known I tore a ligament, and not going to the doctor for three days because I didn’t want to hear what I knew he was going to say.  As someone who has avoided the doctor myself,  I encourage you to be much more logical and proactive with your personal situation than I was.

You wouldn’t treat a broken leg with an aspirin!  Treating what might be PCOS with a vague set of general dietary guidelines that may or not help is doing exactly that.

PCOS actually has an algorithm for differential diagnosis.  That means that when a core cluster of symptoms is identified, a list of other potential problems is considered first.  If the patient’s presentation is not consistent with any of these problems, then the diagnosis of PCOS is made.  The cluster of symptoms that starts the process is known as the Rotterdam Criteria.  This criteria states that the presence of PCOS should be considered when two out of three situations occur:

(1)     Irregular menstrual cycles

(2)    Evidence of androgen excess, either clinical or symptomatic

(3)    Presence of ovarian cysts with an ultrasound examination

Note that these criteria are very different from the symptoms often listed on the Internet.  They say nothing about your weight and they say nothing about insulin resistance, a common finding in the syndrome.  They also say that you don’t even have to have cysts in order to be diagnosed with something relating to cysts.  Even in my practice, if someone comes to me, and even if she tests positive based on the Rotterdam Criteria, I send her to the physician for a complete workup.  And this is why.

Five other problems must be ruled out before these symptoms can be attributed to PCOS:  Congenital adrenal hyperplasia, hyperprolactinemia, a pituitary tumor, Cushing’s disease, and thyroid disease. None of them will respond to the recommended treatment plan for PCOS.  And, in the case of the tumor, if it happens to be malignant, it could be deadly.  We need to fix the right problem!

Once PCOS is identified, it is important to understand that each case is unique, existing for different reasons, and therefore needs a different approach.  Some women may have inherited it.  Others may be dealing with the after-effects of extreme food behaviors, such as extreme raw foodism or veganism, crash dieting, or eating disorders.  Still others may have a primary disorder such as epilepsy or bipolar disorder that is driving the process.  And still others may have a specific food sensitivity.  Using the aspirin analogy again, an aspirin may help dull the pain from the broken leg, but it is not going to heal it.  The same goes with diets for PCOS.  If you have a specific food sensitivity, a general low-carb diet may temporarily reduce the symptoms of inflammation, but it won’t address the source of that inflammation.  And if you AREN’T sensitive to gluten, for example, restricting it also restricts your access to important nutrients that could be helpful in your own personal situation!

From diagnosis to treatment, as hard as it may be to turn your situation over to someone you may not initially trust, if you truly want to know what the problem is, and what the right answer is for fixing that problem, your best bet is not the most popular website on the Internet.  It is the person specifically trained to work with you on a personalized plan of action.

To read more about Monika Woolsey and her work with PCOS, click HERE.


Monika M. Woolsey, president and founder of After the Diet Network, is a registered dietitian and exercise physiologist with 28 years of experience in nutrition and exercise counseling. Ms. Woolsey founded the inCYST Institute for Hormone Health, which is a network of health professionals specially trained to treat polycystic ovary syndrome (PCOS) and other hormone disorders. Ms. Woolsey wrote the American Dietetic Association's first eating disorders, "Eating Disorders: A Clinical Guide to Counseling and Treatment." She has also self-published a collection of fact sheets entitled, "Nutritional Implications of Psychotropic Medications." Ms. Woolsey received her bachelor's degree in nutrition from Cornell University and her master's degree in kinesiology from the University of Colorado, Boulder.

1 Comment

  1. A neighbor of mine self diagnosed a few years ago. She doesn’t really deal with doctors. Most of her self treatment is through paleo diet, some natural vitamin supplement, & MSM supplement. I think she should consider seeing if that is truly what it is & consult a doctor. When she couldn’t afford the supplements last year her mood & coping skills got really bad.

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