PCOS: An Invisible Illness

I’ll begin this article with a disclaimer that this is going to involve my personal experience with being diagnosed with Polycystic Ovary Syndrome (PCOS) and my experience isn’t necessarily to applicable to every person with ovaries. However, I hope the account of my experience and the other information I include will provide insight to those with and without PCOS:

My story begins when I was 12 on the unfortunate day that I got my first period. I remember thinking “Wow, here we go” because this would be happening once a month for the next 30 to 40 years of my life. However, over the next few months, I noticed that I didn’t get a second period, or a third. Through consulting Google and my mother, we concluded this was simply a product of having just started my journey as a menstruating human, which meant it was understandable that I was irregular. However, through my eighth and ninth grade school years I was only getting three to four cycles a year. Of course, at this point, I figured something was up, but who was I to complain about getting four cycles a year opposed to the expected 12? With that said, every cycle I had was more intense than my friends described theirs. I had debilitating cramps and a series of roughly two weeks of the heaviest days of my life. I knew I had to see someone to find out why this was occuring, so my Mom finally took me to a gynecologist.

My doctor is an incredibly straight-to-the-point woman, who greets every patient on every visit with a firm handshake despite her small frame and short stature. I felt well taken care of as a 15 year old seeing a specialist for the first time. She heard my symptoms, which included irregular, heavy cycles with painful cramps to accompany them, and she immediately had me screened for polycystic ovary syndrome (PCOS). The screening involved a blood test and an ultrasound (which, as it turns out, is not only used for pregnant women). Later on, I learned that the blood test was to test my hormone levels, as PCOS presents with higher androgen levels, while the ultrasound was to scan my ovaries for the presence of cysts that have a “small pearly” appearance. I received a call a few days later from my doctor that confirmed her suspicion of PCOS causing my menstrual irregularity. She described the condition, its effects on appearance and fertility, and her plan to put me on birth control to get me regular. As a 15 year old, I tried to act as adult as possible when I was given this news, but I left the phone call incredibly confused. I wondered if there was a cure, how I managed to develop this condition, and a million other questions. Some of these questions my doctor could answer, and some only time would tell. To this day, nearly five years later, I still find PCOS confusing and wonder what can be done besides using regular birth control pills. So for all the people dealing with this condition or with the knowledge of someone with this condition, here’s some of the information I’ve collected in the years since my diagnosis.  

PCOS is a hormonal imbalance that usually develops during, or several years after, puberty. It is estimated that 10% of women are affected, making it an incredibly common condition. In people with PCOS, the ovary does not properly release the egg it produces, which can then develop into cysts that line the ovary. These small cysts present as white and pearly when viewed with an ultrasound, giving a distinctive appearance. With that said, many people with PCOS do not have these cysts, which can lead to underdiagnosis of the condition. Because PCOS affects menstrual cycles and ovarian release of the egg, it is the leading cause of infertility among people with ovaries. It is believed that the cause of menstrual irregularity is due to the increase of androgens produced by the ovaries. In addition, people with PCOS typically have increased insulin levels because insulin resistance is a exhibited. The combination of insulin resistance and increased androgens can cause symptoms such as increased body hair, irregular menstruation, hair loss, acne, weight gain, and difficulty getting pregnant. These symptoms lead to increased susceptibility to other conditions such as diabetes, obesity, uterine cancer, and heart disease.

PCOS is, above all, an invisible disease that millions of people with ovaries deal with on a daily basis. It is invisible but presents with symptoms that can cause insecurity in those that have it. It makes weight loss and staying healthy that much more difficult as well.

I wanted to shed some light on PCOS because it is such a common hormonal disorder that can greatly affect the confidence and reproductive health of so many people. Resources exist for people that have been diagnosed with PCOS, but most resources have left me with hanging questions about the nature of the condition. They provide an overview of the disease but do not answer those lingering questions about the long term effects of PCOS. For example, women are typically told that weight loss is one of the major methods for reducing the effects of PCOS symptoms. But there are rarely answers provided for the most effective type of workout or diet to accomplish this goal.

There are hundreds of unanswered questions concerning PCOS that should be talked about because while it is an invisible illness, it should not be ignored.