PCOS Stories
Do you want to tell the world about your experience with polycystic ovarian syndrome? Send it to lmharvey@pcostoday.net and it will be published here.
Hara Stephanou starts us out about her struggles with PCOS.
Hope through the Puddles
By Hara Stephanou
A few months after getting my ears pierced, a hard, fleshy pink “pea” had “super-glued” itself to the back of third-grade earlobe. My doctor later told me it was a cyst, and suggested that I get it removed. After that one little cyst separated from the shiny, fashionable alexandrite gem that pierced through my earlobe had gone into the deposits of biohazard bins, I began to notice other symptoms on my skin: dark patches, skin tags, acne, excessive hair: there was not one clear patch of skin on my body. I was an dermatology student’s favorite exhibit. Little did I know that my body had not only become a canvas for an abnormal epidermis, but an internal exhibit of malfunction and abnormality as well. I had no idea that those fleshy pink spheres that inhabited the back of my earlobe could fill my female reproductive organs. With the multiplication of oddities on my skin and in my body growing, eventually one thing went missing: my period.
For a while, I thought “Aunt Flo” leaving was a good thing. I could wear white skirts and khaki pants whenever I wanted, and never had to swim with tampons. The more months my period was gone on vacation or skipped around, however, the more I changed as a human being, both physiologically and psychologically. My self esteem had gone through a sewer and regurgitated through a toilet; from those who had said something about my stomach looking as if I swallowed a tire, those who commented on my edible “pizza face” visage and multiple brownish dark spots resembling flattened sausage, and even to my loved ones saying I had become some hormonally malicious monster.
For the first two years of high school, I was completely unaware of my PCOS. There were weeks where I would be deeply depressed : I lost interest in meeting new people, going to social events, and even tried to make myself “sick“ with some real diagnosis just so people would believe there was something wrong with me, and that it was not my fault I was so down, or that I cried every three hours. I drove my friends insane because I could hardly control how I felt, hurt some of my relationships with the people I loved for blaming them on my state of melancholy, and made my parents worried sick about me.
There were better, decent days where I was content as well, but the days of anger, withdrawal or depression greatly outnumbered any smile I had managed to crack. Even though I had looked like I had gone through a dumpster and snapped at even the kindest gesture of any human being on an off day, those around me just thought it was teenage angst, and my doctors thought I was a hypochondriac: everyone gets headaches, periods skip around sometimes, all teenagers get acne.
I felt so alone: no one “got” what I was going through: I had felt so removed and unlike everyone else I knew that was my age, and spiraled into a destructive pattern of pushing even those who tried to understand or help away from me. Despite the fact that I had thought I was a complete failure at life for not being able to experience a skinny, clear-skinned, enjoyable sophomore year of high school existence, I knew better: something was wrong, and not knowing what it was made me feel worse.
After reading an article in a teen magazine about PCOS, I just knew I had it, and it wasn’t from the voices saying “Halleluiah” playing in my head. After basically telling my primary care physician “told you so,“ a trip to an endocrinologist, thirteen vials of blood and a sonogram later, I had been diagnosed with PCOS. I took the irrational task to shove everyone’s bullying and constant derogatory comments in their faces: It was not my fault for looking the way I did, or being an undiscovered case in the Diagnostic Statistical Manual IV, or the Physicians Desk Reference. I later learned revenge was not the solution, but that took me a lot of time and soul-searching.
The diagnosis of PCOS in October of Junior year, shortly after I had my sweet sixteen, already an adolescent-psychology textbook’s definition of a sensitive and difficult age in one‘s life, was the sociopath-monster that I firmly believed ruined my existence. I was fighting a constant battle; a civil war I had not classified: me versus this “syndrome.” I felt removed from the situation: as if I was the “normal” one looking down at some big mass of a human being with some randomly assigned endocrine problem. I blamed my depression, my weight, my dropping grades: every possible obstacle or even joyous occurrence on PCOS. It took me a while to realize that I was the one who had PCOS and I was also the one who handled the steering wheel to the directions of how I should maneuver this obstacle: I could control my own fate and how much I would let a labeled syndrome affect my life: but that steering wheel desperately needed some steering fluid, and that still was not enough.
Choosing a college was quite a bitter experience. Under the influence of Percoset from a recent surgery to remove my gallbladder, about 25-30 years earlier than anticipated, if at all, my gallbladder, as well as my reactions from medications to control my PCOS decided to raise an anathema against me during SATs and College Applications, as well as facing the decision to if I should go to college away from home. Although I would like to blame my lack of thorough investigation and decision making on bile and hardened calcium deposits, of course what I viewed as a byproduct of PCOS, I feared that if I ever left the comfort of my own home, my roommate would never understand why I need to shave every two days, why her acne goes away with one cleanser and mine does not; or why I am an nauseating emotional rollercoaster. I was concerned that I would never find a good endocrinologist, or loose all self control and gain the freshman 15. or most likely in my case, 50. I therefore only applied to schools close to home, and because of my low self esteem, only applied to safety schools and only two “maybe I’ll get in” schools.
My biggest regret was not willing to break my own safety bubble; to take a risk and be away from home; to deal with PCOS outside of those who know me so well, and for that, I find it extremely hard to forgive my ignorance. For so many years, I let PCOS control my life, and not my life to accept that yes, I have this condition, but I am still a human being with goals and dreams, and the right to aspire to be the best person I can be, cysts or no cysts. Although I have several regrets, I have tried to make the best of them. College, even closer to home, is still what I consider a fresh start to how I handled my PCOS, especially my emotions from hormone fluctuations and my frustrations for not fitting into the what I thought was the teenage norm.
It is astonishing and reassuring to know that some of my fellow college students know what PCOS is, and find it as important as I do to make sure that other girls know of the syndrome and take care of themselves. The immature bullying no longer exists, and I knew that in this new environment, although not even 20 miles away from home, I myself had to make the first steps to leading a more fulfilling, goal-oriented, happier life. I have been extremely lucky that my friends from high school and my family have survived this “monster” they once knew and now, so I hope, have the dedication and love from me that they deserve. Although there are going be off days sometimes, especially with finals, midterms, and any day I take statistics, I will not feel as if I had been stuck down a sewer, but a gently falling rain with slight thunder, that eventually leaves a sunny day with clear blue skies and a few puddles to jump over afterwards, in bright red rain boots.
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Hara Stephanou is a college freshman at Adelphi University in Garden City, New York. She is a psychology major, also considering a minor in biology or Spanish. Since her diagnosis with PCOS, she has been researching the syndrome and trying to help those who are newly diagnosed, and other “cysters” on certain PCOS websites and through word of mouth. She is grateful that she has had supportive friends and family who have helped her grow and learn through her experience with PCOS. She is focusing on living without great regrets and trying to find her niche in the psychology field, as well as enjoy the life she has. In the meantime, she is jumping through those small puddles she finds in those bright red rain boots.