Recovery Six months after Uterine Fibroid Embolization (UFE)
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It has been over six months since I had Uterine Fibroid Embolization (UFE). I have some previous blogs about getting diagnosed and the day of the procedure. You can read them here my-experience-having-uterine-fibroid.html and Fibroids-ultrasound-mri-and-ufe-.html Now it is time to talk about recovery. I will start with right after the procedure to now. It is about seven months after the procedure now.
Where I live you stay overnight in the hospital for pain management they give you a self controlled morphine pump. There are other places where you will go home 4 hours after the procedure. I remember being in my room and people telling me they were going to put things in a locker I asked them to give me the ginger coconut water I had in the bag. I knew I wasn't going to be allowed to get up for hours nor did I feel like it I didn't realize that I wouldn't be allowed to get up all night because of the urinary catheter. It didn't matter because I had no desire to get up at all. I thought I was in a private room and had a beautiful big window which my bed was against. After that I went to sleep I woke up felt like I was going to throw up I grabbed the container next to me and threw up then I called the nurse. She gave me some water. I am a person that very rarely throws up and was scared of this happening prior to the procedure. It was fine I had to fast before the procedure and there were a lot of drugs in my system with no food. I went back to sleep after that the next time I woke up I was thirsty and out of water I was glad I had brought that ginger coconut water with me it was night I wasn't going to call the nurse. Then I pumped some more medicine and went back to sleep. I'm sure I woke up more times and probably pumped more medicine I was drugged up and it was the first time I have ever been in a hospital since I was born. The nurse told me in the morning I used a lot. I remember debating if I should pump some more I knew there was a lock on in it and deciding that it would help me sleep.
My procedure was done during a peak wave of Covid in my area but it was not a Covid hospital so no test was required prior to being admitted. Masks were required. When I woke up I realized I had oxygen in and my mask was placed over it but the mask had come off. I thought I was in a room by myself so it didn't matter. Then the nurse came checked my medication, gave me oral medication, then they gave me breakfast. They did provide me with a decent vegan breakfast if I had felt like eating I had some oatmeal with soy milk. Then they took the urinary catheter out. After that I had a very confident unsupervised student nurse. The first thing they want you to do is go to the bathroom. This is when I realized I wasn't in a room by myself there was a lady next to me we had to share a bathroom her area was so tiny I couldn't get behind her walker to get into the bathroom. I was able to walk to the bathroom and use it no problem. Then I was required to put my mask back on so the nurse took me for a walk in the halls. That was fine then we had some miscommunication I had to wait for my mom to come pick me up but it was almost a two hour drive so I needed notice of when I was getting released. It was okay I could stay in my room. There were some other issues that happened I won't get into which should have made me realize the student nurse was not experienced but he was confident.
I had done a lot of research on this procedure I knew they should be giving a prescription for potent pain medications. I asked if there was a prescription and told not for this procedure. I thought maybe the medications they injected me with are slow release I was feeling fine at this time I was super drugged up. Since it was Covid procedure my mom had to come up to get me she worked in a hospital so she also asked about the prescription and also believed the answer of there wasn't one. About an hour after I got home the hospital called saying I forgot the prescription. I told them I asked and was told there wasn't one you can't get those kind of medications from the pharmacy without the original prescription and its almost a two drive to the hospital. The hospital changed the medications so I could get something from the pharmacy but it would be time for them to prepare it. At this point I needed to take something so did a little research thank goodness for the Facebook group I am in and the Dr who often answers questions. There was a suggestion to rotate between Advil and Tylenol every three hours. I very rarely take any medications but I usually keep a bottle of Advil on me if I wasn't at my moms house I wouldn't have had any Tylenol. I suggest having some of these things at home if you are having any procedure done. I also had a free sample of a combo medication that I used later on and it really worked but I can't find it in stores. My mom picked up the medication from the pharmacy but I never used it. I stuck with the Advil Tylenol combo for around 10 days but less frequently each day.
My mom and I live in the same city so I stayed at her house for my recovery. My original plan was to to stay for a few days and then go back to my place at least for the day. I stayed at my moms for over two weeks. I had taken the two weeks off work thinking that I would be fine in a week and would just relax the following week. I ended up taking three weeks off work and I was working at home at the time. The reason the recovery from the procedure is hard is because blood supply to the fibroids is cut off and the fibroids are angry about it. These things have been getting their food for years inside of me and now their food is taken away they fight before they die. The heating pad, medication, and sleeping all helped with the pain. I couldn't eat much I would take a couple of bites and be full. I often do Beachbody on demand workout programs at home I had a goal of completing MM100 which is a 100 day workout program before the procedure. My belly was so huge but I had completed the program. I was so thankful I had because I had the core strength to get up and go to the bathroom by myself. I don't think I would have had it if I hadn't been consistent with working out even though I wasn't losing weight there were some muscles under that big belly. My exercise was going to the bathroom I had to go pee many times those first few days. It is known that when you are full of medication consitipation becomes a problem. I had been drinking prune juice for a few weeks before the procedure and ate clean for a few days as well. I tried many things fiber, vegan gummies, prune juice, but I didn't have a good BM until I think day 5 it felt like a switch turned on it is so satisfying. A lot of the pain is from constipation.
My procedure was done through the groin and I couldn't see the wound over my big belly. It is very small but I had wierd pain in my legs both my legs not just where the catheter was. I struggled to control my legs like I had to concentrate really hard to move them and they were stiff but I could walk unassisted very slowly. I remember going to the grocery store as an outing after a week and it felt like everyone was speed walking around me. This got better each day.
Things got slowly better. I was working at home at the time and I returned to work after three weeks a week longer than I had expected. I remember sitting through a short 30 minute meeting was really difficult the first time just sitting in a chair. That got better after a week and I was functional but didn't have much energy. I was getting light periods for a couple months I noticed my PMS was a lot better I would still get a monthly headache but it was milder than before. I also think this was partly from changing to a full vegan diet. The time was very interesting about a month later we had a very unusual heat wave and I couldn't stay at my place. I went to my mom's place and took my coffee maker but forgot the coffee. This is when I was able to give up drinking coffee everyday. The effects of hormones are very strange. I lost thirty pounds in a few months but I have put some of it back on now. I was so tired I wasn't working out during the first few months but I was napping a lot.
At about 4 months I was asked to start gradually returning to the office in person I started with one day a week I have a very long transit commute. I would come home after work and go to bed I was so tired. I also needed the heating pad a lot at that time but I managed without anything during the day. I still sleep with the heating pad at night but I don't really need it as much anymore. I also didn't have core strength if the bus was crowded standing and keeping my balance was a struggle. I eventually got to the point where I could be in the office three days a week and I didn't have to nap as much. I still didn't have a lot of energy I used to always go out for a walk on my lunch breaks now I would just stay in the office to conserve energy. This could also partly because I had worked from home for almost two years so a combination of other things. I was also having trouble communicating with the gyno and the Dr to get my follow up appointment with the hospital. There was a lot of confusion on who is responsible for what but I eventually got my follow up blood work and MRI booked at around the five month mark. In my area they usually do it at three months.
After a few light periods I stopped getting any bleeding. I had daily discharge though. It was the time of confusion with even trying to get a dr's appointment and it ended up being a wait and see what happens thankfully that worked out. The gyno did tell me that I was probably getting the discharge because my second biggest fibroid was in the wrong spot. I chose the wait and see option as it was possible the fibroid could shrink more and move. The MRI was good all the fibroids were dead. I had 8 big ones the biggest was 12cm and had shrunk to 10cm. As far as the procedure everything was good. They gyno told me to follow up about my blood work with my family dr and they completely contradicted each other so I am not really sure. In the end the result was keep taking iron, thyroid, and Vitamin D and do blood work again in February. They gyno also told me I wasn't in menopause in my blood work appointment and in another told me according to my bloodwork I was. My Dr said unless I haven't had a period for a year they won't confirm. At this point I haven't had a period for five months so I suspect that I am. I haven't had many problems so I hope I am because no PMS or bleeding is great. I am in my 40's I do not have kids and have never wanted them so that isn't a problem for me. If this is menopause then it is so much better than dealing with the fibroid symptoms.
At six months I really noticed my energy level improve. I had stopped taking iron pills for a while and after my blood work started taking them again. I also started taking Vitamin D at around the five month mark. I think this may have an effect on my energy levels. At about six months the discharge stopped.
Seven months later I am feeling pretty good and I am glad I had the procedure. If you are thinking about UFE the facebook group is an amazing resource. If you are considering the procedure and you keep seeing people post bad experiences remember it is more likely for people with bad experiences to post. We are usually told that two weeks is the recovery time but that is just how long it will take you to be functional. For me I really think six months was the mark where I can remember thinking okay now things are good so expect that you might have to be patient things might get worse before they get better. For me they are better now and I hope that this post helps you.
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Comments
Fantastic reviews
ReplyDeleteThank you for sharing your experience! I saw your link to this blog post in the UAE support group—so helpful.
ReplyDeleteI’m sorry it took me so long to see your comment. I’m glad it helped the group helped me a lot as well.
DeleteThAnk you so much for sharing!
ReplyDeleteThank you so much for sharing this!
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