My Fibroid Journey

Let’s start with the very beginning. I have uterine issues, which I jokingly call “my affliction of the womb”. In February of 2021 my gynecologist propped me open with the medical jaws of life and forced a copper IUD through my cervix and into my uterus. It feels as violent as it sounds (no fault of hers though!!!). If you don’t already know, the copper IUD is a hormone free birth control device. A common side effect is increased bleeding during your menstrual periods for the first six months, then it should level out. I’ve always had the full seven day periods, and they were already on the heavier side, but after getting this IUD they got worse. As time passed the length of my periods grew. It felt as if I was constantly bleeding. I couldn’t wear white underwear anymore for fear of bleeding into them by surprise.

I grew increasingly frustrated by this condition and concerned. I kept my gyno updated on the amount of bleeding and the size of the blood clots I was passing. I tried pads, period underwear, menstrual discs, menstrual cups… nothing was sufficient. I experienced so many blood stains which was incredibly frustrating. The breaking point was one particular morning I woke up with my whole left pajama pant leg covered in blood. I sent a picture of this to my gyno and was like hey….I think this is a problem. She was out of office that day so another gyno that was filling in for her ordered an ultrasound for me so we could get to the bottom of this problem. My ultrasound in May 2022 revealed that I had a few uterine fibroids. At the time I hadn’t heard of them, but basically they are non cancerous tumors that can grow in your uterus. How and why they grow is largely misunderstood (under researched?). It is known that Black women are more likely to have them, you are more likely to have them if others in your family have them, and they seem to stop after menopause. Additionally, a high percentage of women grow fibroids, but they often do not create any problems.

If only mine were so unproblematic! My doctor explained to me what this would mean for me. I’d have to start thinking more seriously about if I wanted to have kids or not, and I would probably need surgery when I got closer to 30. I was 24 at the time. In the meanwhile, we made a plan for her to remove my IUD out of concern for it eventually poking into my fibroid. Two details I forgot to mention is that my uterus was much bigger than it should’ve been for someone who has never been pregnant (and is still too big now), and that my largest fibroid was 8.4cm. That’s about the size of a lemon, or a 14 week fetus. In August 2022 my gyno was able to remove my IUD, but the plan to scrape some of my fibroid off fell through due to a complication. This would be the first of many complications I would experience.

In late September 2022, I got another ultrasound, during which we discovered that my fibroid had grown another cm. Another detail I did not previously mention is there are four major types of fibroids: intramural fibroids which grow within the muscular uterine wall (most common), subserosal fibroids which grow outside of the uterus, pedunculated fibroids which grow from stalk like a mushroom, and submucosal fibroids which grow in the inner lining of the uterus (least common and most likely to cause fertility issues). My biggest fibroid was, of course, submucosal. My gyno also discovered that my hemoglobin was really low (8.9 g/dL, normal levels range from 12-15g/dL) which explained a LOT of the issues I had been experiencing throughout the year. I was always tired, bending over would make my head pound and cause me to gasp for breath. Getting into bed would make me short of breath and I’d need a few minutes to sit and recover from going up one flight of stairs. I was bleeding so much that it created all these issues for me. This next detail is kind of gross but the blood was coming out almost like water. It was wildly fast and incredibly uncomfortable.

In November I got a VERY LONG AND VERY LOUD MRI to see exactly what was going on in my uterus in more precise detail.They found 3 significant fibroids. The biggest one was nearly 10cm at this point, another was about 3cm, and another was about 5.5cm. That’s a grapefruit, and clementine, and an apple. All in my uterus where they weren’t supposed to be! My doctor suggested I get the surgery sooner rather than later and I agreed that it was a good idea. I was tired of struggling with all this blood. I was given iron infusions (during which I discovered I can taste/smell things that they put into my IV) in order to get my hemoglobin up high enough for surgery. By January we had scheduled my fibroid removal surgery (a myomectomy) for March 15th 2023.

INTERMISSION

Writing about this makes a little nervous. The backstory is easier to reflect upon than the actual experience at the hospital, and there are so many details that it is overwhelming. I’ll try to find the balance between sharing too little and sharing too much.

March 2023

I spent a few days before my surgery crying. I was nervous and I was really upset that I would have to have a scar. During a myomectomy they cut you basically right in the same place that they cut you for a C-section. I was worried that men would find this unattractive about me in the future, and just unhappy about this new permanent change about my body. I remember my friends telling me that anime characters have scars and they’re pretty cool, which funnily enough did help me to feel a bit better about the whole thing. I took pictures so I could have evidence of what I looked like before the scars. At times I wanted to change my mind about the surgery because I was scared, but also I had hoped to move to Atlanta that summer so I needed the surgery done so that I could have enough time to recover before summer came. Additionally sometimes fibroids get so large that a vertical incision is required instead of horizontal, so I was set on getting the surgery over with before it got to that point. The idea of the horizontal scar was bad enough, I really did not want an even more visible scar. I also felt bad about leaving my mom, who had just had a very serious surgery on February 28th. She could’ve used my help at home but I felt she would be in good care with my sister and my grandmother while I recovered. I had asked some friends and my ex boyfriend to visit with me at the hospital so as not to take my grandmother away from my mom during this time.

The morning of March 15th, 2023 I prepared for surgery in pretty good spirits! I had everything I would need for recovery setup and I was prepared to come right back to my stuff in 1-2 days. Little did I know that would not be back so quickly. I ended up remaining at the hospital for 13 days. My surgery was sometime in the afternoon and I think they were running a little behind. I remember being nervous and cold before surgery. My gynecologist and the gynecologist who ordered the ultrasound (Dr Flood and Dr Holladay) were my surgeons so I felt I was in good hands! I remember seeing them and everyone else in the operating room, smiling because somebody else was Black, feeling the anesthesia mask (???) press into my face, and then it was lights out. I think this was around 3-4 o’clock. I think my surgery was supposed to be maybe 2-3 hours? When I woke up from surgery it was dark. I remember feeling and hearing the nurses move me through the hallways and elevator and maybe even down to imaging before this? It’s hard to know / remember after all this time.

I felt something hard on my left wrist, my throat was sore, and I was flat on my back. I was confused as to why it was dark and I asked my nurse (Abby!!! My favorite!!) what time it was. She said it was around 10 o’clock. TEN!! 10 PM LADIES AND GENTLEMEN! I’m like hello??? What happened?? I think she just said I had complications with my surgery and that I had to lay completely flat for 12 hours due to a hematoma. It was so hard to swallow medications without being able to lift my head up. Abby was so attentive to me and kept me comfortable despite the limitations (I wanted to lay on my side so bad but I wasn’t medically allowed to yet so she just put something slightly under my back on one side) and I will always remember her for this. I was in the Step Down ICU because there wasn’t any room where I was supposed to be on the Labor and Delivery floor. I remember her asking me if I was ready to have my family / friends come in the room and I said yes. Suddenly I could hear my ex (we’ll call him Jay) fussing and next I saw him and all his hair bust into the room with flowers and his stuff to stay with me for up to three days at the hospital. I remember smiling really big. We technically weren’t dating yet, so him being there at all, plus him being something familiar amongst the confusion was so special to me. I think my grandma had gone home because her blood sugar had dropped and she really needed to eat.

I am so grateful that Jay was there throughout my entire journey to recovery. I don’t know what I would’ve done without him. I will never forget the care he showed me while I was down. He was really my rock during those 2 weeks. It was honestly the greatest care I have ever experienced; no one had ever been that attentive to me. Jay if you ever see this, I mean this with my whole heart. Thank you so much for being there for me. There’s no one quite like you.

Jay got into the room and in my mind that’s when he informed me of his experience while I was knocked out during surgery but I was under heavy meds and its been a whole year so who knows? Apparently and understandably so, my grandmother was pretty nervous when my doctor explained to her that I had started bleeding out during my surgery. She was alone for a few hours before he got there. She is also hard of hearing so she missed some of the information at times. Once Jay got there it was easier for her to gather information from my doctor and deal with the situation. I remember her saying my doctor apologized so many times and she felt as if my doctor might cry. Most women are significantly older than me when they first discover their fibroids so from the moment we discovered them, she felt very sorry that I had to go through this. The surgery was mostly fine except for they couldn’t remove the apple sized fibroid due to its location. It would have been particularly dangerous to remove and they didn’t want to risk me bleeding out so they left it in there. Only for them to notice I was bleeding out anyway as they were sewing me up. They had to stop the surgery and get other surgeons in there and move me around and everything. That’s what took so long! I was a little disappointed to learn that I still had a fibroid in me but was happy to learn that they successfully removed 4 fibroids including the big one!

After those 12 hours of laying flat were up, the doctors monitored my hemoglobin and my levels of everything to make sure I didn’t need a blood transfusion. The next morning I noticed I had a catheter in my neck for this very reason; should my hemoglobin dip below 7, they would need quick access. Pre surgery my hemoglobin was 11 point something before surgery and had gone back down to like 8 something during surgery I believe. So we were definitely cutting it close. Thankfully I was okay! I never needed the transfusion and once I got to a certain level consistently, they removed the catheter.

The goal over the next few days was for me to eat, walk, and poop. Once I successfully completed those three tasks, it would be safe for me to go home. It took me a bit to develop an appetite but Jay encouraged me with every step of these tasks. I want to include that he pushed the recliner chair right next to my bed each night so I could hold his hand while I slept to make me more comfortable. I hope someone will have this type of love for me again one day because this was incredibly sweet and selfless of him to do. Anyway, at some I started eating a little and having SO MUCH GAS from them inflating your body during surgery (or whatever hahaha something like that) but passing the gas and going to the bathroom were very slow going. Once they removed my pee catheter it was time to start walking, but the first challenge was getting out of the bed. When I tell you that was PAINFUL. Oh my goodness. Horrible. I remember thinking I’ll NEVER do this again in my life. When you have a myomectomy or C-section, from then on you cannot have a natural birth because your uterus has been cut open before. The pushing could pop it back open, which means if I have a baby, I will be cut again. Oh nooooo no no never again (maybe). They gave me a pillow to press against my abdomen while standing and pardon my french but that thing didn’t do shit at that moment. It is much more difficult than you think to move and operate your body without using your core. That walk to the bathroom felt so long and arduous. Using the bathroom was very uncomfortable those first few times and I felt very bad that I needed so much help from the nurses CNAs, from wiping my bottom, cleaning my body and standing back up, to walking back to the bed. They told me that’s what they were there for but I didn’t want to wipe someone else’s butt so I felt bad that they had to wipe mine!

During maybe my second trip to the bathroom I momentarily lost my balance so from then on I could not walk without the walker. Walking in general would take a lot of energy out of me. When I did a full lap around the hallway the nurses were so proud of me. I really appreciated those nurses, including my other favorite nurse, Juanita! They were so helpful and kind to me and deserve a raise! The most important information at this time is that grandma visited me as much as she could, Jay was there, and I still hadn’t pooped. After multiple cups of miralax still, nothing. It was difficult to even release a fart hahahaha. At one point, Jay was rubbing my back so we could try to convince some of this gas to leave my body! It was hilarious but so necessary! He was with me every step of the way, literally and figuratively. When I finally passed gas and released the tiniest amount of poop a few days in, everyone was so happy! I still didn’t feel well enough to walk though. I started feeling a little weak.

Something scary that happened at this time was this horribly painful cough attack. After surgery you have to do these breathing exercises and I can’t remember why but I wasn’t as diligent with them as I was supposed to be. Coughing and laughing were very painful at this time. I think the breathing thing helped stop the coughing? I can’t remember. I had just completed a longer walk with a nurse that I wasn’t quite so fond of. After she and Jay had helped me back in the bed, there was so much phlegm chest out of nowhere. Maybe the walk had stirred it up. I asked her to please sit me up (the bed was flat and I needed help) but she didn’t listen to me and it was one of those explosive coughs that you can’t keep in. I started coughing these deep guttural coughs that hurt like hell. I needed to spit out the nastiness that came up and I was in the wrong position and any and all movements hurt, so the intense coughing that I did made me start crying. I was in a lot of pain and really scared. I remember a strong feeling of fear and Jay trying to calm me down and help me. I kept saying it hurt and I was afraid. Even talking about it either later that night or the next day I teared up just remembering it. In that moment I was terrified, I think because the nurse didn’t help me the way I had asked her to, and didn’t seem phased by that coughing attack. In my mind I can picture myself on my back with the nurse and Jay above me on either side as I cough and cry while trying to stifle the coughs but I couldn’t and I’m unsure if I even had my little pillow to try to lessen the pain of the coughs either. It took me a good while to calm down after that.

Next I remember a room opened up in Labor and Delivery so I moved to hospital room number 2. I liked Step Down ICU better because the nurses checked up on me a lot more often, at set intervals rather than just when it was time for meds or when I requested them to come. I was still in the hospital because I had just barely pooped so there was still an issue. But I remember one particular day I was really happy because I ate breakfast AND dinner. I think this was maybe 5 days in? Jay was there a long time I remember he left and came back before I moved to this second room. I wasn’t eating much and he was really proud of me that day. I also took my first shower that day with grandma’s assistance. One doctor removed my wound vac (which feels REALLY weird) that day and said I might go home the next day so I was pretty happy. I had also talked to my friend Taylor on the phone that day so I was pretty happy for a long time. I think the one downside for most of the day was that they had taken my walker away so Jay had to help me walk to and from the bathroom because I still didn’t feel right walking.

The night before this day, and that evening I ate grilled cheese and cheddar broccoli soup which I was really excited about because it was the best tasting thing that I had eaten so far at the hospital. Oh before I move on any further I want to send a shoutout to Larry and Nicole, two of my friends who visited me in the hospital while I was still in my first room! They brought me juice and honey buns and flowers and a balloon. Nicole I kept that balloon for months. Anyway so…an important detail here is that I am lactose intolerant. But! Usually I can handle a certain amount of cheese so I thought I would be okay but I was dead wrong! My grandma had left maybe a few hours ago and I remember her telling Jay to text me if there was an emergency. I figured everything would be okay because things were looking up. I had Jay sit in the hospital bed with me and we were about to watch a movie when suddenly I kept feeling this painful squeeze in my stomach. Imagine the strongest person you know of squeezing the mess out of one of your organs because that’s what it felt like. I went to the bathroom and sat in there for a long time but nothing happened. It had been maybe 2 days since my teeny tiny poop happened which was worrying considering I had eaten more in the last 24 hours. As I’m leaving the bathroom I still feel the squeeze but I can’t do anything about it. By the time I cross the room I’m demanding that Jay grab the trash can because I’m about to vomit. It’s just cheese all cheese the stench is horrible, I throw up multiple times, and no amount of vomiting is making the squeeze go away! Usually you feel better after throwing up so this was a big sign that something was wrong.

Jay called in the nurse and I remember feeling so small, weak, and defeated. Here I was experiencing another problem. I was so dehydrated she couldn’t even get any blood out of me. Sidenote they had to call IV therapy so many times throughout this hospital stay because I have very tiny veins. I had so many stabs in my arms. I was always hooked up to something. Even the word “cheese” was making me nauseous. I couldn’t even communicate it to Jay or to the nurses. I had to have him figure it out and recount the situation to them. He wanted to call my grandma so bad but with her spending so much time sitting with me at the hospital AND trying to tend to my recovering mother as well, I just wanted her to rest. I threw up eight times within 24 hours and gagged SO many times. That was the worst 24 hours of my time there, and maybe even the worst of my life. I slept upside down in the bed, which is crazy considering the struggles I was having with getting comfortable, though my incision pain was much more manageable by that day than it had been initially. The next day I moved to another room, on the Med Surge unit, which is another normal place to be after surgery. I gagged a lot and I looked so sunken in and grandma said my skin had turned pretty dark. It was scary to look at. I wanted to take a picture for my mom to see but it felt so awful that I didn’t want any physical reminders that it had happened.

By this time the doctors are thinking I have an intestinal blockage called an ileus. My memory is a little fuzzy here but I think they decided I had to get a nasogastric (NG) tube placed as a preventative measure? It was the necessary step before considering another surgery. Getting the tube placed in is hell. It’s this giant (width and length) tube that they stick through your nose, down your throat, and into your stomach. You have to drink water while they put it in to sort of swallow the tube down. They described the tube as uncomfortable to me, but it is so much more than that. It’s such an irritant to the throat. Every swallow hurts and it was very difficult for me to talk with it in. I tried texting Jay instead of speaking because it was easier for me. I remember him holding my hand. Just feeling the tube in my throat made me gag and mini vomit often so I had to hold this bucket and vomit into that for a few hours. It was a lot to say the least. The tube sucked this nasty gunk straight out of my stomach into a container. This was the stuff that for some reason was not coming out of my other end, which is why I was throwing it up. I remember going down to imaging multiple times and being recognized by lots of hospital staff because I had green twists at the time, and I had been there so long. They had to look at my stomach and figure out the issue. I came back and kept asking when they would take the tube out because they said it wouldn’t be long and it was so indescribably uncomfortable and I wanted it OUT. My nurse Kristie tried hard to convince my new team of doctors to remove the NG tube out but they were adamant that I keep it in for my own good.

I tried to tolerate it, I really did. The whole situation was awful but the gagging definitely made it worse. You feel that tube irritate your throat every single time you swallow. They had given me some throat spray and nausea medicine to help. Eventually they came to put some contrast through my tube into my stomach to get clearer images of what was going on when I noticed I couldn’t really control my eyes. In hindsight this started happening a little while before they tried to put the contrast in, but for a while I was convinced it was the contrast. However right as they were putting it in, the eye issue got a lot more intense. My eyes kept veering up and to the right and I couldn’t control it. I was scared. I couldn’t talk. I remember thinking “what if this is the onset of a seizure? I hope someone notices my eyes!!” And not too long after that Jay pointed out that my eyes were stuck. When I gagged they would shoot back to a normal forward facing position then move back. Before this happened I was already feeling really low. I was so sad at the way my situation had done a 180 in such a short timeframe. I thought I would be going home that day, but instead I ended up having MORE complications! I was like why me? Why would God allow this to happen to me? What if things just get worse and worse and I don’t make it home? I remember fearing I would die, and thinking “I cannot handle one more complication, I think I would actually rather die” but THANK GOD I DIDN’T!!

Jay called the nurse and it was an emergency and so many people bursted into this tiny hospital room. I remember him and my grandma telling me how much this scared them afterwards. I could hear so many people introducing themselves to me but I couldn’t turn my eyes to look at them. They were trying to figure out how mentally present I was. I could understand everything just fine, but I could barely talk due to the NG tube and it took every ounce of mental strength I had to move my eyes. I did my best to show I was still there and they gave me a benadryl and almost instantly I was fine. They told me what I had experienced was a dystonic reaction to a medication that they had given me. It creates a stiff neck and you can’t control your eyes and there’s more to it but those were the main two things I experienced. At this point I was still convinced that the contrast had done this to me and I couldn’t take the pain of the tube anymore so I demanded that they remove it. My doctor explained that I would HAVE to have another surgery if they took it out and I just said go ahead and do it. I don’t care anymore. From that day on I wasn’t able to eat or drink anything, to keep me from throwing up. I craved water and missed the taste of food so much.

I was ready to get the second surgery over with. The worst part was that I was going to have to get the tube placed back in before surgery. My surgeon expressed how important that was and I was very anxious / nervous about that, more so than I was worried about the surgery. I was very thankful that my anesthesiologist (the same one I had for the other surgery!) agreed to put the tube in while I was knocked out. Everyone I met at the hospital from that point on (including him) would say “I read your profile and I see that you really did not like that tube” which kind of made me laugh. I remember Jay saying “yeah I’m sure they wrote ‘chose surgery over NG tube’ in your chart”. So because of that, the anesthesiologist was like yeah I won’t put you through that again you’re already going through a lot. They started this surgery laparoscopically, which means they go in with the robot arms through small holes. Basically they took a peak first to see what was happening, and would only cut me open if necessary.

Unfortunately, it was necessary to cut me open because my intestines were stuck together and that’s why I couldn’t poop! They had to basically just pull them apart and close me back up. It was upsetting to end up with the vertical incision / scar that I had been trying to avoid this whole time. At this point I was just happy to be alive and so it didn’t occur to me to ask my surgeon to make the neatest cleanest incision possible because I was worried about scarring like I had done with my first surgery. So this one was kind of ugly. It is still prominent and my belly button isnt the same. But it didn’t keloid! And I survived!

I woke up with the NG tube in my throat which was much easier than feeling it get forced in there. I think I went almost two days with it in and it was a lot more tolerable that time but by the end it definitely was painful again. I tried to sleep a lot to ignore the pain. During this recovery period is where I daydreamt about food and water the most. I only ate like 4 out of 13 days. They let me have ice chips and it was so delicious and wonderful. It soothed my throat a bit and felt like the best thing I had ever tasted! I craved Jimmy Johns and fruits mostly. After this surgery it was honestly pretty easy going. I kept taking walks but my legs weren’t feeling completely right from so much laying down. I was in my fourth and final hospital room. Grandma would spend the nights with me then come back mid to late afternoon each day. Her presence made a huge difference. I am so happy she dedicated so much time to me. It would’ve been very different had I spent all that time alone. She hung in there with me and slept in the hospital recliner just to keep me company and make sure I was okay. Thank you so much grandma, I love you!

My last nurse Elise (or Erin but I think it was Elise) was really nice and she helped me lotion up after my shower and I remember us laughing together. Another key thing I remember is talking to the doctors after my NG tube was out they were like wow you seem like you’re feeling significantly better than you were a few days ago! And I was like yes I am bubbly and talkative I was just suffering AND couldn’t talk before! This is my voice!!! I think when I started passing gas and being able to poop everyone was really happy! I remember celebrating with the doctors. Everyone was on my team and I felt supported throughout the majority of my stay.

Today is the one year anniversary of me leaving the hospital. I was so happy to see my mom, sister, and newborn nephew again! I had worried about my mom’s health without me there, and I felt bad leaving my sister (we argued before I left) and I was worried my nephew wouldn’t recognize me! I think he started rolling over or laughing or something while I was gone and I was sad that I missed it. I was so happy to see my family doing well and they were really happy to finally have me back.

I realized after leaving the hospital that it had actually been quite traumatic for me. I didn’t want to write about this then because it was too much. I just wanted to focus on regaining my health and teaching my body how to digest food again. I had lost a lot of weight and the nutrition department at the hospital was concerned about me, but I left maybe the next day after talking with them. Anyway, driving past the hospital made me a little nervous for a long time. Even as recently as two weeks ago, the “healthcare scents” I noticed during an ultrasound gave me war flashbacks to my time in the hospital.

As for now I’ve healed up fine! My remaining fibroid is growing fairly slowly, it’s maybe 6.5cm now so I should be fine for awhile! They have to find a non-invasive way to remove that one so I’m still uncertain as to what the solution will be for that one but for now I am okay! I left the hospital with like 7 scars, most of which have faded pretty decently! I get regular ultrasounds. A few weeks after leaving the hospital we had discovered a blood clot in my arm and I had to go on a blood thinner for a few months but I’m fine now! Though my arm still feels a little weird from that sometimes even though it’s been like 8 months. Also I cannot take any birth control containing estrogen due to the blood clot, nor can I use an IUD due to the fibroid still in my body, so the only birth control I can use comes with the side effect of irregular bleeding. I still have heavy bleeding and the long term irregular bleeding is definitely annoying but I feel okay for now! Oops also I forgot to add that I ended up being gone from work for 8 weeks after those two weeks, instead of just two weeks!!

It is 3:17am and I have not reviewed this at all because I’m supposed to be asleep but if you’ve made it this far thank you so much for reading and caring. I’m sorry it is so long!! Hopefully tomorrow I will add pictures to this but no promises! Thank you! Bye!