Undiagnosed Ovarian Cyst – Sonya’s Story
Sonya is a young woman who reached out to me about her ovarian cyst struggle. Having gone undiagnosed for a long period of time, she eventually found relief (and just in time too). In this blog, I’m going to share her story with you.
I published my own ovarian cyst story just over a year ago. My experience has taught me that this medical issue is common in women of all ages. However, despite a common occurrence, women often go undiagnosed for long periods of time before discovering what really should be simple to find.
I share my story as well as others so that women know the symptoms to look out for and the testing to demand from their doctors. It’s as simple as an ultrasound, yet, as you will see in Sonya’s story, many doctors aren’t sensitive to female-specific medical issues.
SONYA’S STORY – STRUGGLE DIAGNOSING OVARIAN CYST
Sonya shared her story with me in an email and has given me permission to share it with you. Below are her words borrowed from that email.
My name is Sonya and I’m a 24-year-old young lady from Jamaica. Since my own troubles with an ovarian cyst, I have been reading a lot and realizing how common these issues are. I just came across your story and thought I would share with you. My story is quite similar to yours. You may share on your blog if you wish.
I was in my 3rd year of University and had made plans to travel to the States for a Summer exchange program. I had a flight at midnight and so I got up pretty early that day to pack and get things in place for leaving. While packing I started to have sharp pains in my right lower abdomen. As time passed, it began to worsen and by the end of the day, I was stuck on the couch. I thought to myself, “there’s no way I’m going to the ER tonight, I have a flight to catch!” My mom came home and being a nurse, she insisted that I see a doctor. On the way to the airport, I stopped at her friend’s (who is a doctor) office and she did a quick examination of my abdomen to ensure it wasn’t appendicitis. She also did a urine test and it came back showing nothing. She said it probably was a UTI developing and recommended cranberry juice and lots of water.
I boarded my plane crouched over in pain. The entire flight was horrible as the pain became so bad I didn’t want to sit anymore. When I finally got to Cape Cod, I went straight to the grocery store and grabbed water and cranberry juice. I slept at my apartment all day. Over time, the pain subsided and so I thought it was, in fact, a UTI.
I had just graduated from University and started a new job when the pain came back to a noticeable degree. It had now extended to my lower back. My pain tolerance is pretty high so I managed the pain and refused to see a doctor because I had just started this job and couldn’t afford to miss a day. My mom and I assumed it was a UTI again and so I just boosted my cranberry juice intake. By the end of the week, the pain disappeared.
I was feeling sick a lot. I had ongoing nausea, loss of appetite, fluctuating weight, a swollen abdomen, and chest pain. I decided to go see my doctor and he examined me and said I was having acid reflux. I went home with antacids and recommendations for a new diet.
I was getting ready to go run errands. I had gone to go shower and suddenly felt like I was having a bowel movement. I struggled to pass stool and felt a sharp pain each time I pushed. Once I stood up, I had a terrible pain stabbed me in my abdomen. I went ahead and showered nonetheless and just assumed I might have just been constipated and pushed too hard. While getting dressed I started having hot flashes and the pain just intensified. I had to crouch over my bed and just wait a few minutes until I was able to move. Once the pain subsided I got dressed and went out to run my errands.
While walking in the grocery store I started to feel really hot and lightheaded and the pain was coming again. I tried to use the shopping cart to hold me up but I felt as if I was about to pass out. I told my mom to finish up and I went to sit in the car. When she finished up, I drove home (mom can’t drive), crouched over the steering in pain. AGAIN, the pain just magically disappeared after a while.
I thought I was constipated so the following day, I tried to pass stool again. And of course, the pain returned. This time I was home all alone and my mom was all the way out of town. I took pain meds and tried to sleep it off but the pain had gotten so bad I started thinking I had appendicitis. I could not get comfortable in bed and as soon as I fell into sleep, the pain would strike me awake. As it got later, the pain just got worst. By the evening I was on my bedroom floor in tears. I phoned my mom and begged her to come to take me to the ER.
I went to the ER (walked in perfectly fine- the pain had disappeared again). The doctor did a vaginal exam and said there was surely an ovarian cyst on the right side and it either ruptured or twisted on itself. I had a terrible fear of hospitals and needles so when she said it wasn’t appendicitis, I rejoiced. I went home on pain meds and got a referral to get an abdominopelvic ultrasound done.
The following day I called out of work so I could rest up and get the ultrasound done. The radiologist told me there was definitely an ovarian cyst the size of a large grapefruit.
I had regular bouts of abdominal pain, especially after doing certain activities like lifting heavy stuff, having a bowel movement, letting my bladder get full, running, jumping, or even walking too much. However, it was managed by my pain meds. I was more nauseous now but just attached it to my poor eating. I was exhausted- literally falling asleep at work every day even though I was taking supplements. By now, my abdomen started to get bloated, to the point where people would assume I was pregnant.
With my fear of hospitals, I just continued managing my pain with pills and never went back to the doctor.
It was a Friday and I was wrapping up the final night of my two-week birthday celebration. I had made plans with my co-workers to go to the movies. I was having pain all day; I didn’t eat at all and had been running a fever and feeling sluggish. However, I told no one as I didn’t want to mess up our plans. I just took my pills and went out anyways. Throughout the movie, the pain intensified but I just tried to adjust to positions I felt more comfortable. I figured my bladder was full and so it hurt that much. I walked as upright as possible to the restroom and as soon as I emptied my bladder, I had some relief. My abdomen was so swollen I was unable to button my pants. By the end of the movie, the pain had subsided.
I drove to pick up my mom from work (about 6 mins from the theatre). At this point, everything just started going downhill pretty quickly. As soon as I pulled into the parking lot, I started throwing up and my entire pelvis was hurting. When my mom came to the car and saw me, she insisted on giving me Gravol and Baralgin injections. I am terrified by needles so of course, I refused. While waiting on her friend who asked to ride with us, I realized the pills were no longer helping and the pain was only getting worse. I was in tears and so I decided I had to toughen up and get the shots. I got the shots and drove home, having to pull over a couple of times to throw up or waiting ’til the wave of pain passed.
When I got home I struggled to get comfortable. I had stopped throwing up, but the pain was now unbearable. It just felt as though someone had stabbed me and kept twisting the knife. I lied on my back; side; tummy; hung my feet off the bed; hung my torso off the bed; put my feet up the wall and even went to the floor but nothing seemed to help. I ended up in my mom’s bed, soaked in sweat and telling her, “something is definitely wrong, I can feel it. I need to go to the doctor!” I begged my mom to take me to the hospital. At almost midnight, my neighbor drove us to a hospital that was about 5 mins away (it felt like 45!).
When we pulled up to the hospital, I tried to get out the car, I couldn’t stand up- my feet went numb. The doctor rushed me into the examination room and after a vaginal exam, administered morphine. I knocked out almost immediately.
4 a.m. Saturday Morning
A doctor came to wake me up so I could get an ultrasound done and urine sample. All the pressing from the ultrasound sent me back in pain. I literally screamed nonstop while getting it done. I tried so hard to pee so they could have the sample but it just would not happen. I had to get a catheter put in. By midday, I was admitted for further observation. I was not allowed to eat and was on IV meds for pain and a bladder infection, and was getting my blood drawn 3 times daily for testing.
Sunday evening I was allowed to eat and leave my bed with assistance. I had no appetite whatsoever, not even to drink water.
I woke up around 2 a.m Monday morning in pain and was unable to go back to sleep. I moved from one end of the bed to the next in discomfort. By daylight, I was feeling stronger and could walk around alone. Even though I was allowed to eat, I had no appetite so I ate nothing just the same. The doctors came around and of course, I told them everything was fine because I just wanted to get home and away from all the needles.
I was set to get discharged on Tuesday. However, Monday night was terrible. I went right back to square one with pain in my abdomen and lower back. I went to bed around 9 o’clock and was awoken by sharp pains by 11 p.m. Once again I tried to find a comfortable spot in bed to try to fall back asleep but it just didn’t happen. I called my nurse and she gave me oral meds which did absolutely nothing! I eventually moved the chair where I spent the rest of the night. I fell asleep around 5 a.m. when the pain started to ease.
After careful thought, I came to the conclusion that I had to tell the doctors what I was feeling because “if I was having that much pain on IV meds what will it be like when I get home on oral meds?” Once the doctors came Tuesday morning, I described everything I felt the night before. They were puzzled as to why the pain was getting better and just came back so strongly. They went to review the ultrasound I had done on Saturday (took them 3 days to look at this result-negligent, if you ask me) and realized the ovarian cyst had twisted several times and cut off the blood flow to the ovary. Within the next 15 mins, I was rushed to the operating theatre. I was terrified. I couldn’t get in touch with my mom and so I was hysterical.
My nurse stayed by my side trying to comfort me until I was put to sleep.
I was cut along my bikini line so my smiley face scar is hidden unless I am completely naked. I had a unilateral salpingo-oophorectomy so they removed the mass, my right ovary and a piece of my fallopian tube. These had all turned completely black because of how long the organ has been dead. The surgeon said had I gone home that morning, I would’ve just dropped dead in a few days- I was like a ‘ticking time bomb.’
I remember being in the recovery room following the surgery and wanting to cough so badly I began to cry. When I went back to my hospital room, I slept all day, occasionally waking up to say hi or bye to visitors and answering my phone calls.
Today, I don’t remember anything else that happened the evening of surgery and the day after that. Tuesday afternoon and Wednesday are quite foggy in my memory. I realized this when persons were texting me days after and I was wondering when I had conversations with them- the doctor said the anesthesia had not worn off completely and that’s why I can’t remember those days well.
Thursday morning I tried to stand for the very first time and managed to take two steps before almost passing out and having to get back in bed. In the afternoon I attempted to walk again and although quite painful I was able to walk long distances. In the evening I had a full-on breakdown. I was feeling sad and sorry for myself. I started thinking of how long I had been in the hospital and how long it will take for my life to get back to normal. I was thinking about my chances of having a baby. (I later read many people go through this moment of “grief” after getting an oophorectomy.)
Friday, I finally went home! So I spent a solid week in the hospital.
Unfortunately, Sonya’s story is common. If you suspect you have an ovarian cyst it’s important to request an ultrasound.
You can reach out to Sonya’s by email (firstname.lastname@example.org) or on Instagram.
WANT TO SHARE YOUR OVARIAN CYST STORY ON CAFFEINE AND CONQUER?
I would love to publish a collection of women’s health stories, specifically related to ovarian cyst issues. If you have a history and story you think other women can learn from please reach out by sending me an email (sarah.fournier@caffeineandconquer). Your story might get women diagnosed early, save someone a lot of pain and even save a life (I know dramatic but it’s true).
Help women who might have an ovarian cyst by pinning the image below to your Pinterest page!