PCOS: A Complex and Often Misunderstood Condition

Despite its high prevalence, PCOS often goes undiagnosed and is often misunderstood.

By Louise D Metz, MD

Polycystic ovarian syndrome, commonly known as PCOS, is a very common condition affecting at least 10%-12% of women. Despite this high prevalence, PCOS often goes undiagnosed and is often misunderstood. Let’s walk through some common myths and misconceptions about PCOS.

 

Myth: PCOS only occurs in cisgender women

When reading about PCOS, you will see that articles and studies typically point out the high prevalence in cisgender women of reproductive age. It is also important to note that PCOS does not just occur in cisgender women, but also commonly occurs in transgender men and gender non-binary individuals. In addition, though discussions of PCOS typically center around reproductive function, this is only one aspect of PCOS and is not relevant to everyone with this condition.

 

Myth: PCOS is caused by weight gain

There is a common misconception that weight gain or living in a larger body is the cause of PCOS, and that an individual with PCOS somehow caused this condition. This can lead to a great deal of shame about having this condition and the myth that losing weight will make PCOS go away. However, the opposite is actually true: weight gain is a symptom of PCOS rather than the cause. PCOS does not only occur in people with larger bodies; it occurs in people across the spectrum of body sizes and shapes. PCOS is not the fault of those who have this condition, and weight loss is not an appropriate or effective treatment.

 

There is still a lot that we don’t know about the causes of PCOS, but we do know that PCOS is primarily a genetic condition. Environmental factors may also play a part in the development of this condition. PCOS is a condition that affects reproductive hormones and metabolic processes in the body. The cardinal hormone finding is elevated testosterone levels, and estrogen and progesterone levels can be affected as well. Insulin resistance and inflammation are important underlying mechanisms of PCOS that lead to various symptoms and metabolic findings. If you have PCOS, it is not your fault.

Just as the symptoms of PCOS affect many aspects of health and wellness, it is important that the management of PCOS not just address the changes in menstrual cycles but also offer a holistic approach to the many symptoms experienced by people with PCOS.

- Louise Metz

Myth: PCOS only causes changes in periods and extra hair growth

PCOS causes a multitude of symptoms that can vary from person to person. The more commonly known symptoms of PCOS are irregularity of menses and extra hair growth on the body (hirsutism), which are caused by the elevated testosterone levels and lack of regular ovulation. PCOS is not just about changes in menses, infertility, and hair growth, however. The high testosterone levels can also cause thinning of hair on the scalp. Other common symptoms that can affect daily life of people with PCOS include fatigue, weight gain, depression, headaches, disordered eating, sleep apnea and other sleep disturbances. Though the name of this condition implies that ovarian cysts are a central part of this condition, not all people with PCOS have this classic finding, and it does not typically play a big part in the symptoms of PCOS. Importantly, PCOS is associated with an increased risk of diabetes and abnormal cholesterol levels. These symptoms and associated metabolic findings are manifestations of the insulin resistance and hormone changes that affect so many different systems of the body and mind.

 

Myth: There is a test to confirm whether someone has PCOS

Since it is a clinical syndrome, the diagnosis of the 4 different subtypes of PCOS involves having a combination of symptoms and test findings. There is not just one test that will confirm or rule out PCOS. Assessment of an individual’s symptoms, certain lab tests, and sometimes a pelvic ultrasound to assess the ovaries are typical components of the assessment performed with the help of a primary care provider or gynecologist.

After using these clinical criteria to make the diagnosis of PCOS, it is important that healthcare providers also consider assessing for inflammatory markers, associated vitamin deficiencies, perform routine screening for diabetes and high cholesterol, and evaluate for signs of depression and sleep apnea.

Myth: Birth control pills are the only treatment for PCOS

Just as the symptoms of PCOS affect many aspects of health and wellness, it is important that the management of PCOS not just address the changes in menstrual cycles but also offer a holistic approach to the many symptoms experienced by people with PCOS. Birth control pills are sometimes one piece of the puzzle for the management of symptoms, but there are other medications, certain supplements, and behavioral changes that may be indicated. A compassionate and individualized approach that addresses the complexity of this condition and does not place the onus on the individual to fix this condition can make a world of difference. 

 

Here are some tips for discussing PCOS with your healthcare provider:

  • Request a thorough lab evaluation of your symptoms, including hormone levels, inflammatory markers, and vitamin levels
  • Request testing for diabetes and high cholesterol every year 
  • Challenge the notion that weight gain or living in a larger body is the cause of PCOS or that weight loss interventions are an appropriate treatment
  • Bring up symptoms beyond the menstrual cycle changes and hair growth such as fatigue, mood symptoms, and sleep disturbances
  • Ask what treatments might help in addition to oral contraceptive pills 
  • Consider asking for a referral to a weight-inclusive dietitian

Dr. Louise Metz is an Internal Medicine Physician who has expertise in the medical management of eating disorders and gender-related medical care. She is the owner and founder of Mosaic Comprehensive Care, a medical practice in Chapel Hill that offers weight-inclusive primary care and gynecologic care for adolescents and adults of all genders.

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