Two Weeks Post-UFE - a couple of questions and lots of details

Posted , 8 users are following.

I had my uterfine fibroid embolization procedure exactly 2 weeks ago. I had it done in the UK (north-west London). In short - the procedure went well and I am feeling better and getting stronger each day. I have yet to have a pain-free day though I have greatly reduced the number of painkillers I'm taking each day. Now I usually take 2 mid-morning and 2 just before I go to sleep. I've been experiencing mild cramps throughout the day. They're annoying more than anything else. It's not a steady pain - rather it kind of comes in waves. As I said, I do feel better and stronger each day, but part of me is unsure of how I'm supposed to feel to know if the procedure 'worked' or is working. I do feel like there is less pressure on my abdomen (I had several fibroids, the largest of which was 18x13 cm). I've had some bleeding/discharge each day and have not been able to be without wearing a pad or pantyliner yet. I am walking around with ease though I have yet to go to the gym for a workout - I plan to do a mild one tomorrow just to see how I feel. Overall I'm feeling alright though I do still get tired a bit easily.

Question 1: How long have you experienced cramping post-UFE? 

Question 2: How different did you feel after UFE in terms of bloating, pressure, pain?

More detailed description of my UFE procedure:

In my appointment letter I was told to call the hospital at 10:30 am to make sure there would be a bed for me. Luckily, they called me at 9:30 and told me that they had a bed and that I was to arrive at 11:30. [Oh, I had a protein shake at 7:00 am and had nothing else to eat or drink after that.] I got to the hospital and went straight to the ward. I started being prepared around 12:30. I was given a hospital gown to change into and compression stockings to wear. I was given both an oral and a suppository pain killer. It only took a second and it wasn't painful. The difficult part for me (or rather the nurses) was getting the catheter in. I was dreading this anyway. It took them an hour and a total of 5 nurses, head nurses, and then finally a doctor to get the catheter in. This does not usually happen; it just happened to me how my organs were - part of it due to the fibroids pushing my bladder into a weird position. The nurses were sympathetic and careful and very apologetic. I just tried to stay calm and relaxed. After an hour of so many hands and faces 'down there' I was more than ready for the sedative. 

I was taken down to the radiology room and an IV line was put into my arm for sedatives and saline and morphine. A local anesthetic was injected - probably the most painful part of the procedure, but it was just a sharp prick - and soon after the sedative set in and I gradually fell asleep. I was pretty much asleep for the whole procedure. I could occasionally hear some talking, but as for feeling anything - not at all. 

The next thing I knew I was waking up in the recovery room in excruciating pain. It really was awful. It would come in massive surges and I would cry/scream out. At first I was hesitant to use the morphine pump but the nurses told me I shouldn't hesitate, so I didn't. They kept asking me to rank my pain. It was at a 10 for ages. After about an hour and half it dropped down to a 4 which is when they took me back to the ward. 

I was given oral painkillers and I kept using the morphine pump throughout the night. I could barely stay awake enough to hold a conversation with my husband. The pain was not good and it really did feel like I wouldn't be able to take it -- but it did eventually subside. I had no appetite at all. I had a few mints as they were all I could stomach. I could take a few sips of water. I threw up several times - side effect of the morphine. During the night my oxygen levels had dropped quite a bit so they put attached a nasal oxygen tube to me. I had trouble relaxing and falling asleep. At the same time, I couldn't really keep my eyes open. I had a playlist with soothing music - I listened to that on repeat all night. It helped a lot. 

By around 1:30 pm the day after the procedure, I started to feel a bit better. They removed the catheter and I got out of bed. I was able to use the bathroom, wash up, and change into my own clothes (I had brought loose yoga pants and a loose top that I could just slip on). I tried to eat, but I still had no appetite. I was still nauseous from the morphine. I was discharged from the hospital at 5:30 pm and was sent home with a presscription of codeine. 

I was warned that the codeine would cause severe constipation. I had underestimated how bad that would feel. I stuck to the codeine for 3 days and then I had to stop it. I was constantly uncomfortable and annoyed that I couldn't go to the bathroom. Not eating much didn't help either. Stopping the the coedine and switching to regular ibuprofen plus having a few bowls of oatmeal had me feeling more 'regular' and was a relief! I was still in pain, but I was trying to cope. I started walking about a bit 2 days after the procedure, and by 1 week after the procedure I was definitely up and about more though still taking it easy as I was tiring very easily. 

I hope sharing my experience was helpful. Please don't hesitate to get in touch if you have any questions. Plus, if you can share details of how you were feeling/improvement post-UFE I'd love to hear them. 

?Thank you!! 

1 like, 11 replies

11 Replies

  • Posted

    Sorry for the few typos! 
  • Posted

    Your experience sounds very similar to mine except I didn't have a catheter or sedatives during the procedure. My procedure was done in West London a year and a half ago.

    With regards to your questions I did experience cramps off and on for weeks after the procedure and although my blood flow was significantly reduced by my first period, the first two were quite painful with cramping and clots.

    I had almost immediate relief of bloating, pressure and frequent urination.

    I believe that the more pain you experience the faster the fibroids are dying.

    If you are still fatigued, take it easy at the gym, maybe keep exercise to fast walking, cycling etc and keep the sessions short then gradually build up. It took me about 2 months to get back to my normal routines without feeling fatigued.

    Good luck with the rest of your recovery.

    • Posted

      Thank you for sharing your experience. I was wondering, for your cramps, where did you experience them? Before my UFE, I experienced cramps more in my central and side abdominal region; however, they're now much lower and more in the pubic region. I was just wondering if you experienced something similar. It's a new type of pain for me. 

  • Posted

    In answer to your questions:

    You have 1 big fibroid as well as some others so I suspect the crampy pains may go on for a couple of months.  I had about 6 fibroids varying from 3 to 10 cm in max diameter and had soreness. Particularly during exercise for about 4 months. I also had a bit more period pain than before for the first 6 periods after procedure. 

    The pressure symptoms improved rapidly, obvious difference by 3 to 4 weeks. 

     

    • Posted

      Thanks Peruvian lily. I know that I need to be patient with the recovery; it's just been frustrating not knowing whether what I'm feeling is 'normal' or not. I am looking forward to the time when I have no cramps at all! 

  • Posted

    Thanks for sharing your experiences ..I'm booked in for UFE (south London) in a few weeks. I'm pleased to have finally been referred for this but a bit worried mostly about the pain and possible infection. Can I ask how you are feeling several months on??

    • Posted

      Hi! Sorry for the delayed reply. 

      It's just over 2 months of my UFE procedure and I'm feeling much better. The daily pain I was feeling is gone. I have mild, occasional cramps, but they're more of a slight annoyance than anything major -- and nothing close to what it used to be. I have resumed exercise, but I've been cautious. After classes such as yoga, which requires a lot of bending forward or twisting, I feel a few more cramps that usual. I feel like it's more muscle spasms than anything else. Nothing to stop me from my normal activities, but I am still being careful. 

      Most of the bleeding stopped 10 days post-op, but I continued to spot or have mild bleeding for the next 3 weeks. I did pass some blood clots/tissue which I assume is the fibroid shredding. It's not painful - just something for you to be aware of so that you don't feel alarmed when you see the discharge. 

      Overall, I am satisfied. I'm definitely starting to feel more like myself which is such a relief! 

  • Posted

    I had my UFE 7 days ago. I am 49 and had been putting up with heavy bleeding and an ever increasing uterus for two years. Never had any pain just bladder problems and extreme fatigue. My doctor suggested UFE to reduce size of fibroids before having hysterectomy. I have one that is huge and my uterus is size if 8 month pregnancy. She said hysterectomy would require much larger than normal up and down incision so any reduction in bulk would be good.

    Initially I did not have much pain. 3 days in I go lower back pain and by day4 I was in terrible pain. The pain would just shoot through my whole abdomen at the slightest movement. The pain killers gave me constipation and made things worse. I am now just taking Tylenol every 6 hours, milk of magnesia sorted the constioation but I feel so bloated, worse than before the procedure. The pain feels more like it is from the bloating and has stopped shooting through my abdomen. I am scared that the bloating will continue and I will not get back to normal. I have some dark discharge - which from reading is probably from dying tissue.

    Before procedure I was excercising and working hard in garden. Can not see me getting back to this anytime soon. I guess I had not expected to be knocked so hard by this. Now thinking I should have gone straight to hysterectomy!

    • Posted

      Oh dear you poor thing! I have read before on previous boards that day three post procedure can be difficult! I hope that things get better for you super quickly. I have my UFE booked for a couple weeks time...very nervous. Let me know how you get on.
    • Posted

      I can relate to your recovery. I was totally wiped out for the first week - extreme fatigue and the pain for the first few days felt awful. However, now that it's been 2 months, things have definitely improved. 

      I tried to rush back with my workouts and immediately regretted it. It was a test in patience - now things are finally getting back to normal. 

      I would have definitely gone for a hysterectomy if I had been able to, but the scar tissue from my previous 2 myomectomies has made the procedure impossible. 

    • Posted

      Hi Toddy,

      I know you wrote this 4 years ago and you might not see this any more. But I'm in the same position your were in then. I had my ufe a week ago and I'm just so bloated. I used to get pretty bloated before i had it done, but this is much worse. Would you mind updating me with what happened to you, but only if you don't mind of course. How long did your bloating last? Did you get improvements in the longer term, and if so, how long did it take to feel more normal?

      Thank you,

      Heather.

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