My Story: I Have PCOS, But What Does That Even Mean?

I knew something was off when I hadn’t received my period for eight months. Sure, it was great not having to purchase expensive menstrual products or have the nuisance of actually getting my period, but I could no longer brush off the fact that something was just not right. 

I received my first period when I was 11 years old. For several years, my period was generally a regular occurrence. It wasn’t until my junior year of high school that they ceased to occur. Eventually, my mother booked me an appointment for a gynecologist to try to understand what was going on. My experience with this gynecologist was not a particularly good one. With this doctor, I started birth control to regulate my periods. Although I was receiving my periods more regularly, I only took birth control for about a year because I didn’t want to be taking them indefinitely. 

This is where I started experiencing my periods less and less. Yes, they had been irregular before, but then I experienced a year that brought only four periods. That doesn’t seem exactly normal for someone not on any type of medication such as birth control, right? 

I would keep scheduling appointments with my gynecologist in the hopes of figuring out the issue. This is where my experience with this particular doctor started going downhill. Each visit consisted of my doctor telling me that all I had to do to start my periods up again was to lose weight. 

Now, I understand that a healthy lifestyle encourages your body to function better and more efficiently; however, I was a healthy girl in high school who knew enough to understand that my missing periods meant something more than losing the extra bit of weight hanging on my frame. 

Against my better judgement, I continued to visit this doctor as I continued to receive three to four periods each year. And each time, my doctor would ask me the same questions, perform no actual tests and tell me to lose weight. It was not a great start to this diagnosis journey.

Surprisingly, it was actually my dermatologist that initially guided me to discovering PCOS. I went for a visit concerning a reemergence of acne of my face (I took Accutane three years prior, so I was concerned.) As part of the routine, my dermatologist quickly asked about my menstrual cycle. My period irregularity coupled with new hair growth along my chin prompted her to talk to me about PCOS. 

After this appointment, I realized I needed to take my issue more seriously and seek the proper help to understand what was happening within my body. In the end, it was my health on the line.

In the summer of 2018, I decided to try a new gynecologist. And I am so grateful I did. 

Immediately upon meeting my new doctor, I knew I was in the right place. With her friendly attitude, attentive demeanor and eagerness to understand my issue, I started on the journey to a diagnosis. 

Based on a thorough discussion with my new gynecologist, she decided to perform extensive blood work and an ultrasound. However, since my doctor is back home in Miami, this proved to be difficult once school started up. Because of this, the process took quite a few months. 

It wasn’t until over Thanksgiving break that I was able to make an appointment to go over all of the results with my doctor. At this point, I was convinced I knew what I had (thanks to Google). I was right — or at least my gynecologist strongly suspected it based on my test results.

This is where Polycystic Ovarian Syndrome, or PCOS, formally enters the story. 

After months of suspecting I had PCOS based on my many Google searches, my gynecologist handed me a copy of all of my results and explained how each hormone she tested pointed to the syndrome. A printed image of my ovaries from the ultrasound further supported her suspicion as she circled the multitude of cysts lodged into my ovaries. On the bright side, the cysts are not dangerous –– they are usually less than 1 centimeter and do not affect me in any major way. 

The thing about PCOS is that to be formally diagnosed, you must consult with an endocrinologist. So, during this past winter break, I was able to snag an appointment with one of the recommended endocrinologists in my area. After providing all of my test results and additional forms, the specialist came to the conclusion that I had PCOS. 

Finally, after years of brushing off the fact that my menstrual cycle was basically nonexistent to having a doctor who turned a blind eye to my issue, I knew what was going on. It was strange to learn I had a disorder but, in a sense, knowing was liberating.

What is PCOS?

Simply put, PCOS is a hormonal disorder. To be diagnosed with PCOS, the patient must check off at least two criteria on a list of three. The three main criteria include absence of ovulation (irregular periods or none at all), high levels of androgens (hormone that leads to acne, excess hair growth, etc.) and several cysts in the ovaries (strangely enough, multiple cysts is not required for a PCOS diagnosis.)

I checked off all three. 

Although the exact cause of PCOS remains a mystery, early diagnosis and treatment is key to avoiding the future complications associated with the disorder. Some studies have drawn a linkage to genetics while others point to several factors such as insulin resistance and certain hormone imbalances

PCOS affects around 5 percent to 10 percent of women in their childbearing years, according to the U.S. Department of Health and Human Services. This translates to roughly 10 million individuals worldwide. In the United States alone, there are about 5 million recorded cases. 

You would think that such a common condition would be well understood or, at the very least, easily diagnosed. But, in reality, many women go undiagnosed (and usually only find out when they run into fertility issues). In my case, the encouragement of my family and my desire to figure out what was up with my menstrual cycle propelled me to discover what was simmering beneath the surface (or in this case, not simmering beneath the surface.) 

I’ll be honest: The entire process of being diagnosed with PCOS was long and a bit frustrating. I would find myself overwhelmed with information concerning my blood work and ultrasound results. I didn’t understand a lot of the medical jargon used to describe what each hormone meant in terms of my disorder, but thankfully I had a great gynecologist eager to translate it all. My endocrinologist also ensured I understood my options for treatment and how this disorder would affect me in years to come.

This particular disorder has no cure, but certain measures can be taken to regulate the menstrual cycle and hormonal imbalances. 

Part of the diagnosis is discussing how to lessen the risks associated with PCOS. More than half of women with PCOS are expected to develop diabetes or prediabetes. Other risks include high blood pressure, high cholesterol and heart disease, among others. This is why it is critical to listen to your body and seek the necessary help to ensure the health of your body. 

Although this is not a disorder that I have to think about every single day, I do need to implement more mindful habits when it comes to my lifestyle because the risks associated are too great to ignore. 

If you suspect you have PCOS, I am not trying to scare you or cause anxiety. I just want you to know that there are millions of women with the same disorder. But we need to share our stories in order for others to be aware that this is an actual issue. 

"PCOS is one of the most critical, underserved, under-diagnosed and under-funded conditions affecting women's health," according to Sasha Ottey, Executive Director of PCOS Challenge, Inc. — and this needs to change. 

Although I didn’t realize it, my PCOS story started years before I even knew the disorder existed. Even if you don’t have any of the symptoms related to the disorder, I hope we can all spread awareness so that others can become diagnosed and seek the proper care to live strong, healthy lives. We all deserve to know what’s going on with our bodies.