My Fibroids + Open Myomectomy Story

Whew…it’s been kind of hard for me to sit and write this story even though I’ve been saying I would share. On the last day of Fibroid Awareness Month, no time like now. This will not be a cute or aesthetic post, there is a photo of the removed fibroids. This is your warning. This was one of the hardest things I’ve ever lived through and it’s kind of hard to go back to that place. I’d honestly like to forget I ever went through this. Fibroids are awful. I had to do a lot of this alone. Less of it than I thought because I kind of got lucky but that’s typical for me and a different story. I discovered my fibroids after a pretty strenuous Pilates class. I was hurting in places I’d never hurt before. After feeling around my abs, I noticed my left side was harder than my right. Not having insurance as a freelancer, I went to an urgent care for a gynecological checkup. I was due anyway and figured I could ask about this firmness during the checkup. This was September 2019.

The urgent care doctor (a black woman) told me I was completely fine and I said great, but what about this area. She felt my stomach and immediately said “oh you have a fibroid…about the size of a grapefruit”. She didn’t seem particularly concerned but recommended I get a vaginal ultrasound. Both the urgent care visit and the transvaginal ultrasound cost me a fortune. No one guided me to the next steps, despite me calling back several times for results. Without insurance, I knew I wouldn’t be able to take the next steps anyway so I waited until I got insurance to revisit this issue. I researched the best doctors in my area and bookmarked them for when I was ready. I wasn’t able to afford the insurance I would need (to cover surgery costs etc) until January 2021. During this time, my fibroids grew larger. I walked around in a constant state of sucking in.

Fibroids are noncancerous abnormal growths that develop in or on a woman’s uterus. The cause isn’t known, but it’s usually hereditary. In some cases, there are no symptoms. I did have some symptoms but I didn’t notice any of them. I had heavy periods and abdominal pain, that I thought was completely normal. I also had a distended abdomen (bloating that honestly made me look pregnant) which I attributed to getting older and lack of exercise. In reality, my uterus was approximately 18 weeks in size. I had multiple fibroids including subserosal and intramural myomas (fibroids) of various sizes and locations distorting and involving my entire uterus. 14 in total.

Like I said in a previous post, fibroids require therapy when they affect your quality of life. There are a few treatment options, like taking medicine to control symptoms the fibroid is producing. Surgical intervention must be considered when a fibroid uterus reaches 16 weeks pregnancy size. Mine was at 18 weeks and pushing my cervix out of place and blocking the view of my left ovary on my latest transvaginal ultrasound. The less invasive options were off the table for me. It was an open myomectomy or hysterectomy. My doctor recommended an open myomectomy because of my age, the desire to preserve my uterus, and the size of my fibroids.

Before surgery, I had to get an MRI with and without contrast. That provides much more accuracy than the ultrasound so the surgeon can see what they’re working with. The MRI shows fibroids that are not visible on the ultrasound. I also had to do a lot of bloodwork prep. April 13th, 2021, I remember saying goodbye to my friend Monroe and being wheeled into the operating room. One minute I was laughing with the assistants and waiting for my surgeon. The next I was waking up in excruciating pain in my room. I don’t typically take even ibuprofen so my body didn’t react well to the morphine. It made me throw up and so nauseous they had to get me on antinausea medication. It made me itch so bad and just generally not feel great. But I always knew when it was wearing off because the pain would return and that was far worse. I had a panic attack when I first woke up because I was confused and felt really lost and in pain. Monroe was there thankfully to help the nurses get me back into bed (I tried to get up) and calm me down.

I was only supposed to stay for one night and be discharged the next day. That did not go to plan, as I lost a lot of blood and my levels were low and no one could provide answers about why that was. But to remove FOURTEEN fibroids, I imagine there was a lot of cutting, at least that’s what I glean from the surgeon’s notes. I had two blood transfusions and I stayed there for 3 awful nights being poked and prodded at all hours of the night. My levels never returned to “normal” but they discharged me on April 17th, 2021. At-home recovery was exactly like they said it would be, about 2-3 weeks. I was told to walk for at least 10 minutes a day and try to move around normally as much as I could, don’t just lay in bed. It was hard. Sitting upright, getting in and out of bed, showering, even a light cough I could not do with ease. I cried. I had another panic attack. I’m immensely grateful for all the people who sent food over, watched my dog, called to chat, and kept me company during recovery. I couldn’t have done any of it without them. It was exhausting in every way. Also, I should mention I got the second dose of the COVID-19 vaccine during the tail end of my recovery. No regrets!

Today, I’m mostly back to normal. My scar remains and there is still some numbness in the area. A constant reminder of what I survived. My stomach though still big, has deflated quite a bit, my periods still suck haha but they’re not as heavy. A lot of people have either come up to tell me they discovered they had fibroids because of my post or shared that they’re scared of doing anything about their fibroids. It’s a really tough and personal thing, especially when it comes to choosing your method of treatment. I knew I did not want to lose my uterus and be thrown into early menopause etc, but some may not have the option. Fibroids can and often return even after surgery. My surgery was $90,000+ and my insurance covered the majority of it yet I still have hospital bills. All I will say is fibroids need monitoring, and the moment you can do something about them you should.