PCOS: Erasing the Stigma

two womenUntil I encountered health-related issues of my very own, I had never heard of PCOS. There are no PSAs, no health class curricula, and it is not uncommon for many physicians to be unfamiliar with the seemingly unrelated symptoms that can be a detriment to the life of a woman who is affected.

Irregular menstrual cycles, weight gain, sluggishness, thinning hair, depression, acne, infertility, and sometimes (but not always) cysts on the ovaries are what a woman with PCOS may have to battle on a daily basis. Not only must a woman endure the physical effects of this disorder, but also the psychological effects that come with these changes. To be clear, that is by no means a comprehensive list of symptoms.

This is polycystic ovarian syndrome, and it affects more than 5 million women in the United States alone.

Stigma

As you read those symptoms, you may have noticed yourself feeling uncomfortable, as each of those symptoms is coupled with varying degrees of stigma. Are you overweight? You must be lazy and lack will-power. Depressed? You must sit on a throne of self-pity. Fertility issues? You may be seen as “less” of a woman, as ridiculous as that may sound. As a society, we grant meaning to these differing identities as well as physical and mental variances between human beings, and the result is that we assign some of these variables to be “lower” and some “better” than others. In our quest to make ourselves fit the mold of what we think is perceived as “best” by our peers and society at large, we unfortunately perpetuate a misguided definition of what is acceptable, and what is “other.”

While you could write for days about the stigma of mental illness, I want to discuss one of these aspects that seems to always be in the forefront of our culture: weight. As with PCOS patients and many others, excess weight often poses a barrier for individuals who need medical care for both weight-related and non-weight-related conditions. It has become a common occurrence for medical professionals to “size-profile” patients, which often leads physicians to focus only on weight as a determinant of health, resulting in a reduced quality of care and fewer people seeking treatment.

It has been found that the common practice of treating weight as a proxy for health could result in underdiagnosis of more than 16 million normal-weight Americans and overdiagnosis of almost 56 million overweight and obese Americans. While I must note that this phenomenon and the above statistic is by no means exclusive to women who suffer from PCOS, it is worth exploring as a contributing factor to why some professionals in the medical community believe PCOS is heavily under-diagnosed.

Prevalence and Manifestation

Polycystic ovarian syndrome is the most common endocrine disorder that affects women, and has been linked to an increase in “male” hormone levels, which cause an imbalance in other hormones and insulin levels, ultimately leading the symptoms mentioned above. While PCOS affects millions of women globally, the phenotype, or observable traits and symptoms of the disorder, can vary greatly and the symptoms described above are only the tip of the iceberg. This variance in symptoms is what has dubbed polycystic ovarian syndrome “the silent killer” of women of child-bearing age. As many of the symptoms seem unrelated, it is fairly common for medical professionals to misdiagnose and under-treat patients with the syndrome.

The stigma that is attached to these symptoms is also a contributing factor in why many women don’t seek treatment, and why far too many physicians will chalk up the cause of this ailment to poor choices such as a sedentary lifestyle. Many women often end up blaming themselves for the physical manifestation of their disorder, and either never seek treatment, or wait years to see a physician.

Risk Factors and Treatment

To date, the cause of this hormonal imbalance is still unknown, yet it is likely that genetics play a significant role. If left untreated, PCOS can lead to life-threatening conditions such as diabetes, heart disease, and stroke. At this time, there is no cure; however, medications are available to help manage your symptoms. If you or a loved one suspects they may have PCOS, finding a physician that understands your unique needs is the first step.

Resources

I encourage every woman to utilize the resources below and to forward this list to the women in their life. Staying informed and taking control of your health is one of the bravest things you can do, and I hope for everyone to do so despite the barriers they may face.

At Planned Parenthood, we specialize in women’s health and can both diagnose and treat PCOS. If you want to talk to someone about your symptoms, make an appointment at Planned Parenthood Arizona!

One thought on “PCOS: Erasing the Stigma

  1. Thanks for writing about this. I was diagnosed back in the 1960’s, when this was called Stein-Leventhal Syndrome. I was diagnosed surgically because one fancy endocrinologist diagnosed an adrenal disorder requiring more serious treatment. Over the years, I have met many women with PCOS, and many more who might have it but were never diagnosed.

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