If you didn’t know, I had 2 ovarian torsions during my pregnancy with Graham. With each ovarian torsion, I had surgery. I should have written things down right away to remember everything exactly but I didn’t. It was very jarring both times and mentally exhausting. I quickly touched on the first time in a blog post with a life update where I announced we were expecting, but the whole story is much more than that. I found such little information online about ovarian torsions but they do happen and can even happen to very young girls so I wanted to explain, in as much detail as I remember, what happened.
First Ovarian Torsion and Appendectomy
Monday, December 13, 2021
I was extremely nauseous in the beginning of my pregnancy and it really didn’t fully go away until 20 weeks or so. I never felt ‘good’ but one evening, the night of my 32nd birthday I was 14 weeks pregnant, I woke up in the middle of the night with a very sharp, shooting pain on the lower right side of my abdomen. I kept changing sleeping positions, thinking it was something related to a basic pregnancy pain, but nothing helped. I tried to go to the bathroom and that still didn’t relieve any pain. I was awake in pain for hours and my husband woke up noticing I was in pain. We began Googling (as anyone does in their first pregnancy) and wanted to just believe it was round ligament pain. The pain was constant and relentless, it caused me to throw up and the only other logical explanation I could think of was appendicitis.
Tuesday, December 14, 2021
It hurt to touch the lower right abdomen and area around it and once I began throwing up we knew it was time to go to the ER. I have a high pain tolerance and being newly pregnant, I didn’t want to seem ‘dumb’ for typical pregnancy pains but this was not normal in my eyes. It was about 5am at that point and thankfully we got in very quickly. We went to a hospital that was closer to us rather than the hospital my OBGYN works out of because I wanted to get somewhere asap. They took an MRI to look at my appendix and only saw fluid around it but couldn’t determine if it was actually leaking or close to rupturing so they didn’t want to do anything. As a side note, getting an MRI where you have to lay on your back and be super still for more than 30 minutes is extremely difficult with that pain. I remember barely being able to breathe from trying to fight through the pain and try to stay still. After the MRI, they checked on Graham and he was thankfully breathing well with a steady heart rate. I was there all day and sent home about 5pm with no solution or answer. I was still in the same pain.
The Following Week
That whole week I was in extreme pain. It hurt to walk and talk. On top of the pregnancy nausea I was still experiencing, I could barely eat from the actual pain of whatever was going on. I went to see my doctor a few days after I was in the ER for her to keep an eye on Graham and he was thankfully STILL ok. She thought it could have been an ovarian torsion (when your ovary twists and cuts blood/circulation off) OR appendicitis but they couldn’t see anything in any of the scans either. Her only thought was that maybe the ovary untwisted itself, which does happen. I started feeling a bit better without constant pain on Saturday and I continued to take it easy.
Monday, December 20, 2021
That following Monday the pain ramped up again in an extreme way. I could barely breathe at work and needed Steve to come get me. I knew something was wrong and needed answers. He picked me up and we decided to head to the hospital my OBGYN works out of. I was in the ER waiting room for 4 hours. The ER was getting packed with person after person coming in who just tested positive for COVID at the drive through testing site right outside the ER. I couldn’t believe I was in this situation and that I was still in this much pain. The pain was still fully in my lower right abdomen and started radiating into my back. Steve was getting frustrated and continually checked with the front desk, I was just trying to breathe and keep calm.
When I was finally called to the back, they did their initial tests and gave me nausea medication. They wheeled me up to get an ultrasound. That ultrasound took 2 hours and needed 3 technicians. They were pushing down so hard on my stomach I just had tears in my eyes trying to hold back actually crying. Since I was pregnant, it was very difficult for them to see anything. They needed to change to the vaginal ultrasound wand (which hurt in its own way!) and they continued to push as far as they could to see my right side because they couldn’t find my right ovary. By the time the third technician came in to help look at the screen, she found it and I could tell she immediately knew something was not what it was supposed to be. They sent the images to the ER doctor and I was wheeled back to the ER. From there it all happened so quickly.
I was told they found I have an ovarian torsion, that the head doctor of my OBGYN practice was on his way, and I needed immediate emergency surgery to untwist my ovary. They let me know they will also bring the general surgery team in to most likely remove my appendix. I can’t say enough good things about the nurses at Monmouth Medical. They were all so helpful and caring from the moment I got in that room. They funny enough had to take a pregnancy test from the urine sample I gave when I first got in as a pre-surgery protocol so that gave us all a laugh. I had to get a COVID test, changed into a different gown, and then they wheeled me into the pre-op room where I waited for the surgeons and anesthesiologist to come discuss everything with me.
My OBGYN came in to let me know what happens with an ovarian torsion and that since the torsion causes blood flow to the ovary to stop, there is a possibility that I will lose my ovary. He also told the general surgery team that he expects a 99.99% chance they will need to remove my appendix. The anesthesiologist had to also let me know that a risk of all the surgery could be potentially losing the baby. It was all pretty jarring and I was definitely very scared. I am so, so, so very thankful my husband was able to be by my side, holding my hand for all of this.
I woke up out of surgery around 10 or 11pm and all went well. The baby stayed safe and they were able to save my ovary. It was twisted 5 times which they said was unheard of and I did in fact have mild appendicitis and the appendix did not look good so they removed it. I stayed overnight and I was released a little before noon the next day. I had 3 small openings for the laparoscopic surgery but recovery was much more intense than I expected. I was 15 weeks by the time I got home from the hospital and was recovering from surgery while also still dealing with all day pregnancy nausea.
Healing
It took several weeks but I was finally feeling ok after my first ovarian torsion and surgery. I was able to run and workout again and was finally out of all day nausea. I signed up for the runDisney Princess Half Marathon over the summer and was training for it my whole pregnancy. I was not training hard in anyway but was just keeping my body used to running and running more than 10 miles while pregnant. Since my surgery threw a wrench right into the middle of training, I still wanted to safely get back to running so I could run the half even if that meant doing a run/walk for it.
Second Ovarian Torsion and Oophorectomy
Saturday, February 26, 2022
I was 24 weeks pregnant when we went down to Disney World for a run vacation. My brother and cousins came to run as well. Steve, my parents, Aunt and Uncle, and Grandma all came to have some Disney time and either run with us or watch us run. We stayed at Port Orleans (one of my faves!) and we all had a very nice relaxing first day at the pool. We took the boat over to Disney Springs for some dinner and then went back to the resort so we could get into bed early since our half marathon wake up time was 2:45am.
That whole day, I had what felt like a stitch in my side. I’d have to stretch and take a break even if I walked just a few steps. I made sure to really leisurely walk anywhere and not push myself in any way. When it was time to hop in bed, the pain really set in. I was tossing and turning trying to get in a position that eased the pain and it hit me. It was the exact same pains I had the first time around. I woke Steve up and began to cry hysterically. I didn’t want to be dramatic again, but I knew. My Aunt used to live in the area and was a labor and delivery nurse in Orlando her whole career. She had since moved to Colorado but was visiting with us that week. We called her to see the best hospital to go to and she drove us there right away. She was our saving grace while we tried to keep our family from initially freaking out. We wanted everyone to still enjoy the run the next morning and still get their Disney vacation. My Aunt brought us to a nearby hospital that did not have a NICU. She knew that if the moment came that a NICU was needed they would order a transfer to the larger sister hospital in downtown Orlando that had a highly rated NICU.
Since I was 24 weeks, I was immediately admitted to the labor and delivery floor rather than waiting in the ER. I told them everything about my prior ovarian torsion and surgeries, but it went on deaf ears with the first doctor. I asked for a vaginal sonogram since that was the only way they could see it the first time and after quickly looking, they assured me that everything was fine and I was not having an ovarian torsion.
Sunday, February 27, 2022
My pain continued to be incredibly intense, and I knew it was the exact ovarian torsion happening again. The doctor would come in and we wouldn’t see her again for hours. We called my doctor at home and left a message with the on-call doctor since it was in the middle of the night. When the doctor did come back, they let me know they had a room ready for me to be admitted to. By the time I got to the room in the morning, the next shift of doctors came in and I had a new doctor. Even with a new doctor, everything I told her was ignored. At this point I forget all of the doctors I had but I do remember that none of them listened to me.
My OBGYN from home called my husband and we spoke together about what should be done and what she wanted to see the doctors do for me. The next doctor that was on shift for the day came in to review everything that had happened and what tests were done. She wanted me to get an MRI. The MRI was another extremely painful one. I held tears back the entire time while trying to just breathe through it.
If you didn’t already know, whenever you get things done or a test is ordered to be done, things take hours. It’s not ready right away, results take a long time to come in, and then the doctor looking at them takes a while longer. Every time something is ordered to be done, it’s hours in between of just waiting. By this time, the half marathon was done and my parents came to the hospital to be with me. The doctor finally came back after the looking at the MRI results which they concluded couldn’t show anything. She out of nowhere was convinced I had a hip infection and was extremely persistent on this.
It’s been so long since then that I don’t remember the true timeline of how long this took but she wanted an xray on my hip and the orthopedic doctor on call to come in to assess my hip. After hours, I went to get the xray. I was wheeled on the wheelchair and they propped me up on the table. When I told the tech what I was there for, they said they didn’t have the right order and it said I was getting a back xray and not a hip xray. So they had to scrub the order and put in a new one. Which meant I had to go back to my room and wait hours for the xray to be ready again. I was finally wheeled up again for the hip xray and I was crying from the pain of being in specific positions for the xray. I apologized to the tech because I hate being an inconvenience and seeming like a baby in any situation, even if it might warrant it.
I got back to the room and the doctor came back in to tell me that she called the orthopedic doctor to come but it would be a while. At this point I asked if I could be transferred to the other hospital because it seemed like no one was doing anything to actually help me. It seemed as if we insulted her and she became defensive and almost threatened us to not be able to leave. Things became a bit heated in the fact that we didn’t stand down in letting her know she was completely wrong, and she would not listen to the actual patient who had been in the position once before. She still insisted it was a hip infection and wouldn’t order the transfer so we threatened to walk out of the hospital. Hours later she came back and said she worked ‘her magic’ and ordered a transfer but I needed to be first cleared by the orthopedic doctor.
The orthopedic doctor came in and I discussed everything with him. He gave me a look like ‘are you seriously telling me that this doctor said you have a hip infection??’ He was like I doubt you do but let’s check to be sure. He took all of two minutes and said no, you don’t have anything wrong with your hip and you are cleared to be transferred. The ambulance took an extremely long time to come and by the time it did it was about 10pm at night. The doctor again, made sure I knew it was because of her that this was even possible. I can’t even make it up. It was infuriating.
I got to the next hospital in Orlando and they set me up with the belly monitor as I waiting for the doctor. We discussed everything with him and this was another round of ‘I don’t believe you’ we had to deal with. The doctor refused to believe I ever had a previous ovarian torsion or that I had surgery for it. He said if I was having an ovarian torsion right then, I would be screaming my head off and would be inconsolable. He also didn’t believe me when I said the last time it happened, I had an appendectomy, and my doctor was able to untwist my ovary and save it. He kept insisting I didn’t have my ovary if I had the surgery. It’s unfathomable that you as the patient are not even listened to or believed in instances like this. My whole family and my husband were listening to this man tell me I was wrong.
Monday, February 28, 2022
The next morning, my OBGYN was able to get on the phone with the doctor that was on call at the hospital. She explained everything to him (just as I had) about my past ovarian torsion experience and surgery- he said to her that it was not possible and did not believe her. He refused to help me in any way, didn’t even make suggestions. At this point, the nurses that day continued to monitor Graham with the belly monitor. She came in at one point and said, ‘you don’t feel that?’ and I responded with ‘feel what?’….I was having contractions. My body was in so much pain and had been in so much pain for days that it was starting to go into pre-term labor. I was only getting Tylenol every 6 hours but my torsion pain was so intense that I never even felt, or didn’t realize, my uterus contracting. The nurses continued to monitor this very closely and began having to time my contractions. I think I was so numb to any pain that any new type of feeling that happened, I just chalked up to being part of my ovarian torsion pain. If it progressed, it could that meant full labor and I may have a pre-term baby.
The next doctor on shift came in and we were hoping maybe this one would listen to me. The new one still didn’t fully listen but was a little more open to seeing options. He was more open to the idea of doing surgery to see if there really was a torsion and if so, fix it, but was not comfortable doing it since I was 24 weeks pregnant. He was adamant that If I had surgery, the baby would die during surgery or he would have to be born early and since I was only 24 weeks, there was very little chance he would survive out of the womb. They brought in the head of the NICU and some other NICU doctors who were more familiar with possible issues like this. This is where things happened quickly. The one NICU doctor had performed surgery on pregnant women many times but I was much further along than she felt comfortable with. She also urged caution that the baby would have to be born via c-section while they were performing the ovarian torsion surgery and there was little chance he would survive in the NICU. The head of NICU came in and talked to me sitting right by my side and was the only one to really seem like she believed what I had been going through. She slightly pressed on my stomach, saw my pain, and read my history. She looked at the several doctors staring at me in my room at the time and said, this woman has an ovarian torsion, there is no question about it, and she needs surgery now. The doctors, without any hesitation, got to work on getting everything ready for surgery. We thank, God every day for that doctor.
They brought me down to the surgery area to prep me. I went in and unfortunately knew the whole routine of what to expect being rolled into the surgery room, but I definitely felt even more anxious this time because of the very real possibility I would lose Graha,. I remember freaking out right before going under because I felt like I was being choked when the mask went on me, but I went out immediately and when I woke up, I just remember seeing Steve and asking him what had happened during surgery- was Graham ok? Yes, he is doing great, and they saved him. No, you do not have your ovary, it died, and they had to remove it. I sobbed knowing Graham was still safe in my belly while simultaneously not knowing what not having an ovary means for us as a family in the future. I was wheeled back to my room and the nurse came in to continue to monitor Graham. She couldn’t find his heartbeat for what felt like 20 minutes, and I remember seeing my mom internally freaking out with her head down. More nurses had to come in and finally, they found it and it was perfect. My contractions subsided, and everything seemed to be as normal as a pregnancy is meant to be. The head of the NICU came in to check on me and assured me that many women with one ovary can have children and she didn’t want us worrying at all about not being able to expand our family if we choose. We thanked her profusely for being on our side and helping us.
Tuesday, March 1, 2022
Tuesday was supposed to be the day we were originally flying back home. The doctors let me know that I would be checked in the morning and if all looked good, I could be discharged. My doctor from home ok’ed me flying and wanted to home as soon as I could as well. I was discharged and we made a b-line for the airport. We all wanted to get home STAT. My dad had left with my grandma the day prior, my mom decided to stay extra days in case I had to stay longer so she stayed to be with my aunt for a few more days, and my husband, brother, and myself all caught the plane without having to change anything. I moved slowly but with the help of my husband and my brother, we did it. It somehow all worked out even with all of the obstacles. We made it home and we collapsed from mental exhaustion.
Healing
Steve and I had lot of very serious conversations during the first time we were in the hospital and the second time was no different. We knew the surgeries had to be done but we also knew the extreme risk of potentially losing our baby. It’s exceptionally scary to have no control over the situation at all but I am so glad he was next to my side every single second of both experiences.
When I got home from Florida, I got to really look at my incisions from surgery. It’s crazy how night and day the surgical work from New Jersey is compared to the work done in Florida. I had perfectly clean, small incisions and stitching from my first surgery and my second surgery looks like I was sawed open. They’re still small compared to what other surgeries are like but the stitching was terrible and the lines are barely straight. They are much more raised than my original ones and one even got infected right away from it being poorly sutured up.
When I got back home, I went to see my doctor for a follow up with her. She was so relieved to see me and to see my baby was still doing well. She said she couldn’t wait for me to safely get out of there….she also informed us that Florida does not have any malpractice. YUP. And if a doctor is convicted (is that the proper term?) for malpractice in another state, Florida hospitals will still gladly accept them. It all made sense when we heard this. The amount of terrible, and I mean terrible doctors we came in contact with for the four days in the hospital with a serious emergency was astounding. So, if you need surgery done, don’t do it in Florida. The nurses on the other hand, were incredible and were the only reason we were able to stay somewhat calm during the whole hospital stay.
That was a lot and I’m sorry it was basically a novel, but I had nothing to go off of both times this happened to me. We Google everything we could and there is such little information out there on this subject. Just know as a female, if you are experience these symptoms, or even something completely different, keep advocating for yourself. Don’t take no for an answer and keep pushing.