Getting Diagnosed with PCOS

illustration by Yinne Smith

“Goblins dancing on my ovaries,” “Moses parting the red sea,” “Aunt flow is paying a visit,” “Code red,” and “The painters are in” are common euphemisms that I have used time and time again to complain about my “monthly bill.” My period, the bane of my existence, has recently occupied my thoughts more than ever before. For as long as I can remember, I’ve had monstrous, tsunami-esque periods. From the length of the period itself to the way it uproots my life, my period has always been a royal pain in the butt. Since my period began, I have had cramps that make me double over in pain and incredibly heavy bleeding, in addition to PMS and other lovely symptoms. I started my period when I was just nine years old, so I always thought it would get better with time and age. Whenever I vocalized my concerns about my period, my parents, doctors, and friends assured me it was normal, so I thought nothing of it. With every passing year, I hoped that my symptoms would lessen, and somehow I could find ways to alleviate the unbearable pain. Every girl goes through it, I thought. I truly believed it would get better. But alas, it never did. If anything, my periods grew worse. They became more irregular and eventually became a constant source of physical and emotional stress. Finally, at nearly 21, I had had enough.  

I had been avoiding going to the gynecologist for a general check-up. I have a major phobia of all things medical, so I wasn’t exactly looking forward to my first visit to the gynecologist. I walked in alone, palms sweating, heart racing, nauseous beyond belief, and knew something was wrong the second I stepped into the office. I explained my symptoms to my doctor, and she immediately said “it sounds like PCOS.” I froze. Forgive me for sounding dramatic, but I suddenly forgot how to breathe. That day, I thought I would just get a prescription for birth control and waltz out the door. PCOS wasn’t even something that had popped up in my mind as a possibility. PCOS. Polycystic Ovary Syndrome. Isn’t that super rare?

Johns Hopkins Medicine defines PCOS as “Polycystic ovary syndrome (PCOS) is a condition in which the ovaries produce an abnormal amount of androgens, male sex hormones that are usually present in women in small amounts.” The cause of PCOS isn’t super clear, and the symptoms vary from person to person. Some women have physical symptoms including excess facial hair, baldness, and cystic acne. Some women also have ovarian cysts. Fortunately, I don’t have any of those symptoms, which is why it wasn’t obvious to me that I have PCOS.  

Essentially, my first thought after I learned I had PCOS was “oh dear god I’m a man.” My second thought, sprung in a moment of sheer panic was, “what if I can’t have kids?” I don’t even know if I want kids. I’m not even 21, I shouldn’t even be thinking about this stuff. My thoughts always surround my next homework assignment, my next concert to go to with friends, and when to pay my rent. Kids haven’t ever been more than a passing idea in a very distant future. I have to finish school, there are so many things I want to do and achieve before I even think about starting a family. And yet, for the first time perhaps ever, I had to seriously think about my fertility options, and my heart plummeted. The fear that the option of having children isn’t an option made my heart stop. 

My gynecologist read me like a book and quickly assured me that it wasn’t anything too serious, and that PCOS is fairly common, just not talked about enough. She went on to explain what PCOS is, and that I would need a good deal of further testing to determine how to treat it. She sent me out for a quick blood test and then mentioned once she had my results, she would call me to discuss other forms of testing and treatment options. The day I received the diagnosis, I watched every YouTube video under the sun and read every article I could about PCOS. My google search both comforted me and terrified me, but I still had a thousand unanswered questions that only my doctors could answer. 

Just a few days later, my doctor called me. She confirmed that I definitely have PCOS, and then delved into treatment options. She mentioned birth control as an effective way of regulating my hormones and stimulating a period (as well as regulating them), and then hesitated. My doctor emphasized birth control as the primary form of treatment, and then danced around the idea of “lifestyle changes.” With a clogged throat, I asked her “do I need to lose weight?” She answered in one breath, “Yes.” I won’t lie, discussing the topic of weight loss was just as terrifying as learning I have PCOS. I struggled with disordered eating and body dysmorphia for most of my life, so hearing that I need to lose weight in order to get better wasn’t exactly comforting. I only recently became comfortable with my body and my current weight, so hearing about weight loss was, in a word, devastating. After crying a bit and letting my disappointment out, thankfully my doctors assured me that there are ways in which I can lose weight and not have to change my lifestyle drastically. After having an MRI done, I learned that fortunately, I don’t have any ovarian cysts, just extra follicles (which is a sign of PCOS).   

After seeing both a gynecologist and endocrinologist, they both determined that the best way to treat my PCOS is with birth control and weight loss. Since starting my treatment and learning the full nature of my diagnosis, I feel incredibly relieved. Don’t get me wrong, I’m still anxious about what PCOS is and the role it will play in my life, but I feel confident knowing that I am actively trying to become healthier and lessen the severity of my symptoms. What surprised me the most was how common PCOS is, and how little we as a society talk about it. According to the CDC, 6-12% of women in the United States have PCOS. That’s 5 million women. And those are just the women who have been diagnosed! There are probably thousands, if not millions of women around the country who have been living with PCOS for years but have never received a diagnosis.  Since my diagnosis, I would like to raise awareness about PCOS and help other women who are struggling with it so that they don’t feel alone. I hope that girls like me can turn to other women with PCOS for comfort and find clarity as well as hope.