You came into my life when I was only 18. I was young and totally unaware of all the trouble you would cause me. All I knew at first was that my periods hurt, a lot. Family and friends thought that I was just exaggerating my level of discomfort. But, somehow, I knew that this was more painful than it should be.
This cycle of pain went on monthly until it became too much. I was doubled over in pain, completely crippled by lower abdominal pain when my mom finally took me to the emergency room. She finally believed that this had to be something more.
They did all kinds of scans to find out what you were. They found a cyst, caused by you, the size of a lemon on my left ovary; gave me pain pills; and told me to see a reproductive specialist, which I did. When the OB-GYN came into the room, he began to explain the differences in types of ovarian cysts - what causes them, what they may or may not be filled with, and explained that 90% of the time they were harmless, and the body would naturally reabsorb them. I asked him what about the other 10 %? That was the moment I heard your name for the very first time. He said, that in rare cases, women have a condition called Endometriosis, which is characterized by painful periods and painful intercourse, black-blood- filled-cysts, and eventually
infertility. He explained that the only way to find out which percentile (I felt like a statistic) I fit into, was to rupture the cyst, drain it, and examine what came out.
Deep down I knew that this wasn’t normal pain. I already knew that it was you...
I got into the female examination position. He put on gloves and grasped a 6-inch needle with tubing attached to the end and some sort of collection device. Your unforgettable black blood slowly drained out. I wanted to cry, I wanted to get up and leave, but I was still in a compromised position. I remember thinking about all the things I had been experiencing for months - they were exactly what the doctor described as your traits.
You made me never want to have sex. You made every period the worst week of my life. You made me dependent on pain pills for periods of time. You made me doubt whether I would ever be able to have children of my own. You ultimately made me doubt my woman-hood when the doctors told me that the only affective “cure” was to have my entire reproductive system removed from my body.
I was confused by you. I was hurt by you. You made everything about being a teenage girl incredibly more difficult. Periods were excruciatingly painful, I had to have surgeries to remove blood filled cysts, I was told that I was most likely infertile anyway and the best way to move forward from here was to have a complete hysterectomy.
I had never been so confused. An 18 year old female having her entire reproductive system removed seemed to be too much. It was too drastic, too severe. I was realizing that my desire to be a mother was being taken from me, and it was your fault.
Despite these doctors “infinite wisdom” on what was “best for me” I decided to continue in this crazy cycle of pain. They put me on birth control which helped the pain to a small degree, but I was NOT going to have a hysterectomy. I made a choice to live with you, take my chances, and hope that the doctors were wrong about the infertility issue.
I would go back and forth in my head over the next 10 YEARS on whether I had made the right choice by keeping my uterus and ovaries. I never got pregnant, never even a possibility. I began to believe that I was infertile and there was no hope. I re-considered my choice to not have a hysterectomy so many times, all because of the doubt and fear that you instilled in me. BUT, last year - right after thanksgiving - a miracle happened: I became pregnant! I can feel my little miracle kicking inside my belly as I write this letter to you, now. Maybe all the suffering was worth it. I still have you, you will always be with me, but fear of you doesn’t plague me anymore.
Female, Age 30
Endometriosis, Cirrhosis the Liver - Stage 4;
Chron's Disease, Bipolar Disorder
Brianna Schiavoni, LCSW
“Ms. Schiavoni has given a voice to many people who battle various diagnoses. Through this therapeutic and empowering writing project, participants can finally share their story and reclaim their power over that diagnosis!”