After a long few years of doctor’s appointments, hospital visits, blood tests, and ultrasounds I am finally ready to accept my new reality. My insides looked like a chocolate chip cookie except the cookie was my ovaries and the chocolate chips were undiagnosable.
It all started in the November of my first year of college, I think. I don’t actually know when it started, maybe it was eleven years ago when I first got my period, or maybe it was sometime in between. And for those of you who are sensitive to discussions regarding the female reproductive tract and menstruation, specifically mine— I’d turn away now.
I had successfully mastered my first two months of college, sort of. Classes were hard, friends were hard, roommates were hard, life was generally pretty hard. I hadn’t really found my rhythm and was struggling to keep to a schedule. Through the stress I had inconsistently remembered to take my birth control and was probably just causing more problems for myself.
I decided an IUD would be the answer to my problems, given that it would do the job without me really needing to do anything. In order to find the right one for me I needed to know more about my natural cycle, which was something I hadn’t experienced in almost four years. I went on birth control very young to regulate my extremely irregular cycle. I went off my birth control in order to gain a better sense of my natural cycle and match myself with the perfect IUD. And thank goodness I did.
Being off the birth control drove my hormones crazy. I know that can happen to people when they wean off birth control, so I gave myself time to adjust, except time wasn’t what I needed. Weeks, even months, later my body was really out of whack. I was breaking out like crazy all over my body and hair was sprouting out of places it never had before. It was like going through puberty all over again, but something wasn’t right.
I had gone to my dermatologist in attempt to get things under control and she was pretty concerned for me. She suggested I follow up with an OB/GYN specialist and have some tests done. As it turned out, my body was producing an elevated level of testosterone and a lot of my blood work came back irregular. Most of the results were consistent with PCOS (Poly Cystic Ovarian Syndrome), so we were pretty sure that’s what I had. I went back on birth control to regulate my PCOS and hoped for the best.
Being at college and coordinating with doctors back home is no easy feat. I can guarantee that no break from school was without multiple doctor’s visits and testing. I even had to plan weekends home in order to make appointments. The Amtrak Downeaster became my best friend.
My initial ultrasound was pretty unclear but showed signs of cysts on my ovaries. Women naturally produce cysts during their cycle making it difficult to consider them as problematic or diagnose what they are. I followed up a few months later with two more ultrasounds that provided more clarity. There were definitely cysts on my ovaries, and they weren’t supposed to be there.
Creating a medical plan is pretty challenging when you go to school an hour away from home. The cysts didn’t look too bad, so the plan we made was really just to monitor them. I had ultrasounds done every three months just to make sure they hadn’t grown and that was all I could really do.
Eventually, there was one cyst that grew. I named him Hubert. I had an MRI done, and Hubert was much bigger than the others. Our best guess was that he was an endometrioma and that I actually had endometriosis instead of PCOS. At that point my doctor told me my options. Basically, I could have an ultrasound every three months for the rest of my life or I could schedule a cystectomy and say goodbye to my friend Hubert.
There was a chance that he, or someone else, may grow back but I ultimately decided on the surgery. Truthfully, I felt like it’d be easier to have surgery, recover, and officially diagnose what Hubert was than to have an ultrasound every three months for the next ~50 years. So that’s what we did. I scheduled a surgery for last summer and finished my sophomore year like everyone else.
I chose to share my health issues with only the people I felt were on a need-to-know basis. My family, of course. My best friends, who provided so much emotional support throughout the process. My roommates, obviously. How else do you explain going home so much? My second semester freshman roommate— she kept up with my doctor’s appointments too. And then basically any friends who I felt like I needed to explain my dissociative self to.
Depending on the diagnosis of the week, I was up for varying levels of social interaction. Having a mass on your ovaries that’s playing with your hormones definitely doesn’t help with already struggling mental health. My mood swings were nothing short of embarrassing, and Hubert was almost an excuse for me to avoid responsibility for hurtful things I may have said. College in general is stressful enough to make someone act out, add potentially dangerous medical diagnoses and honestly, I am surprised I wasn’t worse.
I include this part to apologize to anyone who observed these qualities but didn’t have an explanation as to why I wasn’t acting like myself. I went back and forth about writing and even publishing this article because the general public is not automatically welcome to my personal business but, ultimately felt like I owed a lot of you an explanation for my disconnect.
It seemed July 18th came sooner than I would have imagined. It was like one minute I was taking my Econ final and the next I was being prepped for surgery. My team was incredible. Maybe it was because I was young, or maybe it was because I was really the only person there at that time, but everyone was just so kind and friendly. Internally, I felt their sympathy for the not even twenty-year-old going under the knife and not even really knowing what the outcome would be.
After I woke up from the surgery, I got to see pictures of Hubert. I didn’t really know what I was looking at, but my doctor told me she was pretty sure he was just a Dermoid cyst. She cut him, and his friends out, sent a piece to pathology, and stitched me up. Recovery felt like an eternity. My whole body was sore, and I had to rely on other people to sit up. I was incapable of doing anything that required abdominal strength. Thank goodness I had all of Stranger Things to binge watch!
A couple weeks later I received a call from my doctor. Hubert wasn’t a dermoid cyst. He was something called a Borderline Malignant Tumor, an extremely rare type of cancer that can only form on an ovary. It can spread to other organs, but borderline malignant tumors always begin in the ovaries.
I did a lot of research. I cried with my mom a lot. I didn’t really know what that meant. I couldn’t understand how something could be borderline malignant. I always operated on the belief that you either had a terminal illness or you didn’t. I never knew you could kind of have cancer. I had to see an Oncologist at the Mass General Cancer Center. But ultimately learned that I had already done everything I could do. Hubert was removed, and that was the most important part. I don’t need chemo, I don’t need any form of radiation, nothing to do but wait and see.
My mom was really my rock throughout this whole process. Being twenty, I was adamant in my belief that I needed to establish my independence. Oftentimes, I didn’t want my mom to come with me to appointments because it would take everything in me to not breakdown in her presence. I felt if I could somehow get through my appointments without crying then everything was probably okay. But in the end, I really just needed my mom to tell me everything was going to be okay, and she was always there to do that. She was always giving what I needed, and sometimes even a little more. She accepted me naming my tumor, she took these pictures as I was being prepped for surgery and as I was recovering even though she didn’t want to, and she never left my side. She sat in my appointments and didn’t say anything but then would later explain to me all the confusing medical terms my doctors were using.
As it was explained to me, the term cancerous just defines cells that grow irregularly. It doesn’t have to mean a death sentence. It also doesn’t just have to mean bald heads and fatigued bodies. Truth be told, I wasn’t sure if I was ever going to tell anyone. I didn’t want the added social pressure that would come with having a diagnosis like this. It was so challenging to go to these appointments, especially at the cancer center; the staff knows I’m young, the waiting room knows I’m young. Sometimes I could literally feel their pity and I just didn’t want to be the “sick girl.” I didn’t want people consistently checking up on me, asking me how I was, or if I felt like I could do basic daily tasks. I didn’t want people I haven’t spoken to in years to try and reconnect with me. I wasn’t really interested in retelling my sob story to people who never seemed to care before.
You may wonder what changed. All my CT Scans post-surgery came back clear. For now, I am okay. I am healthy. I am alive. And this hell is over with. Sure, there is a 20-40% chance that these tumors could regrow. But, as of now, there is no sign of metastatic cells in my body, and no sign of cysts on my ovaries.
I am following it; I still have to get checked every six months. At nineteen, I was significantly younger than the average age of women who develop these. If they come back maybe I’ll have them removed again, maybe I’ll get my ovaries removed, who knows? Not me!
This was a major bump in the road but, as it turns out, I am a Massachusetts driver and I haven’t found a roadblock I couldn’t find away around. This situation put a whole lot into perspective for me. For a while, I didn’t know what the rest of my life looked like, now I’m just excited to find out.