Real Talk: Living With an Ovarian Cyst and Learning to Listen to My Body

It was about 2AM on a Thursday when I started to feel a throbbing in my lower abdomen. The sensation didn’t hurt, but as I was listening to my body, I knew something was wrong.

I couldn’t go back to sleep. I stayed awake for the rest of the night and dragged myself into work the next day. I tried to ignore how I was feeling for most of that day but I was exhausted. When I was still feeling off on Friday, I called my cousin, who is a Gynecologist, to ask for some advice. (Side-note: I’m super lucky to have amazing doctors in my family, and even more lucky to have a tight-knit family that I can always count on.)

My cousin told me to head to my OBGYN and to ask for an internal sonogram, as it could rule out several possibilities.

I called my OBGYN’s office about 10x to check for openings in the day and kept being turned away, so finally I told them I was going to show up until my doctor could see me. They weren’t happy but I didn’t care. Deep in your gut, you know when something isn’t right, and I wasn’t about to let the woman answering the phone brush me off and minimize how I was feeling. I showed up, waited about two hours and finally my doctor had an opening.

She gave me a regular check-up – you know, they press your abdomen a bunch, feel around a bit, etc. – and she said everything seemed fine.

When I insisted on the internal sonogram, she eventually obliged.

I was relocated to the next exam room where they do internal sonograms and I kept thinking what a happy place this must be for most people, as they get that first glimpse of their kidney bean sized fetus. I kept feeling like the doctor was going through the motions to be courteous, she was polite, but not her usual self, like when I go for my annual visits. I was a big inconvenience that day, and I knew it! Anyway, they take this enormous “probe”, cover it with a condom (yes, a condom), and in it goes. She was looking at the screen, and I was looking at her, trying to read her expressions. All seemed normal until her face froze, eyes widened, and she paused the screen.

There it was, a big black mass on the screen, sitting in my uterus, attached to my ovary.

She continued to poke around, and capture images of the mass (aka ovarian cyst) from different angles so she could take proper measurements. Now, my OBGYN is super professional, but I think even she was a little shocked since she didn’t feel the cyst physically when she gave me the first exam. She didn’t say much for the rest of the sonogram, packed everything up, printed some images, and said we would meet back in her office.

Usually when a doctor calls you into their office, it isn’t good.

I was seated, across from her, and felt incredibly small. She started to explain what was going on, and that I would need surgery. Once she said “surgery”, I lost it! I felt like a giant infant, sitting there sobbing, but once she mentioned the “S” word I couldn’t hold back the tears. I asked that we dial my cousin in, so she could explain to her, who could then explain to me in layman’s terms.

Basically, I had a huge cyst (that sometimes was referred to as a tumor) on my ovary, and the ovarian cyst had to be removed in the very near future.

I was instructed not to travel, which also upset me greatly since I had travel plans for work coming up. I was warned there was a slim possibility that the ovarian cyst could cause my ovary to tort. Let me tell you what it means to have your ovary tort: it is when your ovary completely twists around and you risk cutting off its blood supply. It’s incredibly painful and you risk losing the ovary. She said I would absolutely know if ovarian torsion was happening, and if it did happen, I would have to go to the emergency room immediately. At the close of the conversation, my doctor told me we would need to schedule a surgery in the coming weeks and that she would be in touch.

I left there in a bit of a daze: so upset, so tired, and in a lot of pain. All of the poking around from the sonogram really disrupted things in my uterus. I remember it being painful to lift my arm to hail a cab, and feeling out of breath. When I was finally able to spot an available taxi, a woman popped in front of me and hopped in, I had zero energy to argue. I felt defeated and hobbled over to the next avenue, crying, and finally I caught a cab. People who know me well, know that I am not a person who cries often, if ever!

I called my mom in the cab to fill her in and then I called my boyfriend to meet me at the parking garage to get the car. I was way too upset to go back to the office. Travis (my boyfriend) happened to be driving a friend home that day also, which was horrible. I had to sit in the car, with some random dude for over an hour. All I wanted was to crawl under a rock. Or at least be alone with the person I love.

And then it happened. Ovarian torsion. I had the most horrific pain you could imagine in my abdomen; I could barely breathe and was brought to my knees by the severity of the pain.

And listen, I know pain. I was a gymnast growing up; I’m an athlete. I’ve had stitches, broken toes and fingers, sprained ankles, minor kidney damage. Not to mention I was the youngest of four kids and had my fair share of ass-kicking’s. I know how to manage pain, but this was nothing I could have ever imagined. Just as I was about to call an ambulance, the pain suddenly stopped. I stupidly decided to hold off on calling my doctor.

The next morning, it happened again. This time it was even worse. I remember falling to my knees, dry heaving, and desperately calling my mother to come get me. I felt so fragile, I couldn’t even stand. I didn’t recognize myself. My mom happened to be with my aunt at the time, who is also an incredible doctor and who has cared for me my entire life. They were at my place within minutes, and the pain was only getting worse.

We made our way to NYU Langone Medical Center and called my GYN to meet us there. My doctor happened to be sick that day, and the doctor-on-call came to the rescue. I really lucked out because he was the absolute best. He was well-known in the field, and had performed that surgery many times.

The entire time I was in the hospital, leading up to the surgery, I was in pain. They wouldn’t give me any painkillers until they performed their own internal sonogram and could understand the full extent of my condition. That sonogram lasted about 30 minutes, and the technicians couldn’t have been more gracious, holding my hand, and rubbing my arm throughout the process, I sobbed through the whole thing.

Finally, we went upstairs, where I was prepped for surgery, and wheeled toward the OR.

For some reason, they stop the wheelchair before you actually get into the OR and make you walk into the room yourself. I don’t really know what had gotten into me but I flung the door open, where about eight people were getting everything in order, and I shouted something to the effect of “the STAR has arrived”. I’m pretty sure they had given me morphine so I was a little loopy. I lay down on the table, where people swarmed all around like busy bees getting into place, and before I knew it, it was lights out.

I woke up hours later and my whole family had come to the hospital. Going into surgery in a rush, and waking up afterward to your entire family is a blessing. The nurses were absolutely incredible, with me every step of the way. Even when I could get up to use the bathroom, step by step, someone was there to help out.

Just after midnight I was discharged from the hospital; my mother and aunt were with me. It was a painful ride home, an hour of bumps and I felt every single one of them.

The entire experience was terrifying. But I learned an important lesson: know your pain.

Remember that no one knows your body, its rhythms, its aches and pains, better than you do. Remember that the odds are against you. According to The Girl Who Cried Pain, women are less likely to receive aggressive pain treatment, more likely to have their pain minimized and more likely to be characterized as emotional and given a diagnosis for mental illness.

In a system stacked against you, you must be your own advocate.

If I did not cause a scene in my doctor’s office upon that first visit, if I hadn’t demanded a sonogram, if I hadn’t convinced my doctor that my pain was worth addressing, I’m not sure how this story would have played out.

So be strong, be confident, and listen to your body.