An Invisible Illness
The year was 2015. I vaguely remember the moment in high school where I was on the track field, and that dreaded feeling every girl gets when her period is about to start. But something was wrong; I could sense it. Ahead of me for the next couple of hours I had to perform my best, and my determination was high. Little did I know that day would be the start of a lifelong battle.
The next few hours, shooting pain throughout my lower abdomen began to occur. I had to step out of my track meet, and tell my coach that something was wrong. The pain had signaled my period was here, which should have been a normal event for me, like any other girl in high school. But for me, my period meant cramps that were so painful, the only relief I could get was from laying in the fetal position on the bathroom floor for hours. It meant not knowing when the bloodbath would strike, because of how irregular my cycle was; and now, it means changing my entire daily routine, and endless doctor visits. For me, my period means hearing the diagnosis “polycystic ovarian syndrome (PCOS)” linger in the back of my head almost every day, and trying to reverse its symptoms.
According to Penn Medicine, about 10% of the female population has Polycystic Ovarian Syndrome. For so many women having it, I feel like it has not been talked about enough. That day after my track meet, I ran home to my mother crying, saying I never could participate in sports again, due to the unbearable pain, and the unpredictable nature of it all. This was no normal period. As any amazing mother would do, she took me to the doctors, and I told them of all my symptoms.
“Birth control,” the doctor said to my mom and me. “Cramps are a regular part of any women’s period,” I was told.
I was never diagnosed with anything that day, though. I did as I was told, and started to take the pills. As the years rolled on, my body and face began to change. Not in a normal feminine way that most women imagine themselves to change. Acne began to flood on my face, but only in certain areas. The sides of my cheeks, chin, and jaw were the victims of this, and I must say I found it quite peculiar that the rest of my face (forehead, nose, and front of my cheeks) had always been crystal clear — never had a blemish in those areas. My body also began to change. It wasn’t until I was getting ready for the beach one day in junior year of high school that I noticed it. Thick, coarse black hair in a steady line along my abdomen. Shocked, I took off the rest of my clothes and began to inspect myself in the mirror in front of me. That same thick black hair (mind you I am a natural light ashy brunette) on my feet and toes.
“Am I turning into a man or something?!” I thought to myself.
I was so horribly embarrassed that I stayed home that day and told my mom to take me to a new doctor.
“We will switch you to a stronger birth control,” the doctor said.
It started to sound repetitive, but I dealt with it. That was until college rolled around. At this point, my parents had moved out of the country, in hopes to retire in beautiful Costa Rica. Which in a result, meant that I would now be figuring out my symptoms by myself. Since I had moved from my original hometown to Northridge for college, I figured I’d get myself a new doctor anyway. This time, it was different. She took a good look at me after explaining all my symptoms to her. A confused look ran across her face.
“Normally, patients with polycystic ovarian syndrome are overweight,” she told me.
“Poly-what?” I ask.
“ It means you have cysts attached to your ovaries.”
Still, I wasn’t quite too sure what to make of that either. She proceeded to tell me I would need an ultrasound to confirm the diagnosis. She also was the first to really explain my symptoms to me and made them make sense. The body hair, bloating, extreme pain were all due to my hormonal imbalance. Well, I got an ultrasound done after hearing all that from my doctor, and sure enough, on the ultrasound, many black little dots appeared in front of my eyes that were living on both of my ovaries. I remember it being quite a crazy sight to look at and shocked that I had so many. The best thing they said they could do for me, was to just monitor them and make sure they don’t turn into cancer. I went home feeling defeated because I knew there was no cure for what I had or any real treatment.
Fast-forward to early May of 2021, when things take an unfortunate turn for the worse. At this point, my periods were very irregular leading up to this moment, which meant that months could go by without having one. But one thing would always signal it’s coming — cramps. And oh, was I in for a ride with this one. It started out much more innocent, like a cute knock at the door before a raging stampede of bulls came crashing in. The pain is almost always cry-worthy, but this time, this time was something really special. Four whole days of what I ranked to be the absolute worst pain of my entire life, was what I had to battle.
The difference was, these pains were not actually coming from my uterus and lower abdomen, as I had learned to manage those and tolerate them throughout the years. Instead, what could only be described as someone stabbing my stomach with a hot knife decided to stick around for a miserable 96 continuous hours. At that point, I thought the problem was much bigger than polycystic ovarian syndrome. I headed to the ER, crying of pain and feeling hopeless for some answers on what was wrong with me. As usual, the nurse only said I was dealing with really bad cramps. I simply could not believe it. Determined, I called up a specialist instead to be seen right away. Another ultrasound was done, and I finally got my answer to my stabbing pain.
“Well it looks to be that one of your cysts could have actually ruptured,” the doctor said.
I was quite disgusted, to say the least. But still, with this information, there was nothing that could be done for me. Physically, I was torn to bits. But now, mentally, I had had it. I FaceTimed my mother, crying, telling her I could not let this happen again, as it enormously affected my quality of life. Although she felt for me, there was unfortunately nothing to be done. At that moment though, her comfort and empathy seemed to almost be enough.
Polycystic ovarian syndrome will always be a part of my life. I have chosen to accept it, but that does not mean I am not trying to lessen the symptoms. Dietary changes and pain relievers are now a part of my routine. If I cannot fix what I have, I at least want to reach out to other women who have it, and let them know that they are not alone in this painful journey.
