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Fibroid embolization experiences

Posted , 37 users are following.

asa93843
asa93843

Hi!

I have a 6x6 cm fibroid which causes me heavy bleeding and pressure symptoms.

I will be seeing a doctor in two weeks to discuss treatment options as I refuse hysterectomy.

I'm 39 with no children.

I've been reading about embolization and would really like to get in touch with other women who have done this procedure. Has it worked for you? Has your bleeding (and life!) gone back to normal? Has your fibroid shrunk, if so by how much? How was the pain? Do you recommend embolization?

Looking forward to your replies!

Have a good day ladies!

3 likes, 89 replies

89 Replies

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  • murnaloo
    murnaloo asa93843

    Posted

    Hi there,

    I had UFE on 21 December. For five years I suffered but was told it was either all in my head or I was constipated. Seriously. No one scanned me and only one doctor even touched me. My primary complaint was bladder related. I felt like I needed to pee all the time. Very little would come out. I got up about 6x a night. I had no quality of life. At the same time, my periods got heavier, longer and more frequent.

    In September I went to A&E with acute urinary retention. This happened five more times. My GP seemed to think it was taken care of by teaching me to self-catheterize. I could not live with such pain, pressure and fear. My husband and I borrowed some money and went to a private consultant, who did an MRI. This revealed a 12cm fibroid the shape of a rugby ball sitting on my bladder.

    Within three weeks I had UFE. It has only been three weeks since the procedure but I already feel better. The procedure itself is not bad at all, but I had excruciating pain immediately afterwards. This is quickly taken care of with morphine. I was on morphine for about 24 hours and it does make you nauseated. I left the hospital less than 48 hours after the procedure with pain controlled by paracetamol and just a general washed out feeling. This is normal.

    Actually, the more pain, the better, as it means the fibroids are dying. My doctor and the nurses told me this.

    If you are a candidate for UFE, I highly recommend it. I will have my first scan at 8 weeks, but the bloated feeling is already gone, my bladder is slightly better and I am completely recovered from the procedure. UFE is available via NHS but your gynaecologist will likely steer you from it. Mine said my only option was a full hysterectomy. Uh, no, it's not and I demanded a second opinion (which I got privately).

    I am 46 with no children. Let me know if you have any other questions. Good luck!

    • asa93843
      asa93843 murnaloo

      Posted

      Wow! Thank you so much for your reply! How horrible that no one did a proper check up on you!

      I live in Sweden and have been taken good care of the past year thankfully but it takes a lot of energy having to fight for your uterus. Now a year later and several gyno-visits later I am finally going to see a doctor in a big hospital and I know they can do embolizations there so hopefully they have empathy and will listen to what I want.

      Otherwise I will seek privately too somewhere.

      Please keep me posted on how the follow up goes and thank you for telling me your story! All the best!

    • shell69386
      shell69386 murnaloo

      Posted

      Hi murnaloo, it does seem hospitals want you to have a hysterectomy and its something everyone needs to be aware of. If I needed to go down the surgery route if things become worse I would ask for embolization to be considered and ask for a second opinion etc. I had to ask for the esmya it was not offered to me.   I am so surprised that you were not offered an ultrasound to see if you had fibroids as a first measure.  Everyone has different experiences. It seems to depend who you see and what you say are your symptoms.    I think if you are worried it is good to get an MRI privately if you can afford it. I did that too. Ultrasounds can show but not always clearly.
    • shell69386
      shell69386

      Posted

      I am so sorry to hear you suffered for so many years, that is also the message I was trying to portray in my response too and thanks for sharing that. 
    • patricia27802
      patricia27802 shell69386

      Posted

      Just ask the Gynocologist to refer you to Radiology for an MRI scan to test for suitability if they refuse seek a 2nd opinion cos they (Gynocology) don't want you to have it. Mine said he doesn't believe it works and it's painful both were lies. I had to fight to get UFE most women do
  • jana63905
    jana63905 asa93843

    Posted

     Hi, I'm using voice recognition so I apologize for the typos. I had embolization done three months ago. I just had a repeat mri and my fibroids shrank  65%. Originally it was 10 cm and I had extremely heavy bleeding and was anemic. I am 51 years old and   The procedure put me into menopause.  it was extremely painful for  me for an entire entire week!  The cramps are no joke!   I think the procedures best for intramural fibroids mine turned out to be submucosal and as a result I am having a lot of discharge even three months later. However the doctor was impressed by the reduction in such a short time so I am hopeful it will continue to shrink and the discharge will stop 
    • patricia27802
      patricia27802 jana63905

      Posted

      Yeees just really happy for you being a sufferer myself. I'm 11 days post op. Have you had any shrinkage? I look 5 months pregnant of course I want rid of bladder weakness and heavy periods and anemia as well. So glad you are doing well x
  • angel368
    angel368 asa93843

    Posted

    Hello, I also had the embolisation procedure in September and I recommend it whole heartedly.  I suffered with extremely heavy bleeding (had to wear 3-4 pads at a  time and change every 2 hours during my heavy days), pressure systems, frequent urination and fatigue. 

    After reading about the options I decided to go for UFE because I felt it was less invasive but had a good chance of reducing my symptoms. 

    The procedure itself it relatively pain free, but for me the intense pain started about 30min after the procedure and lasted about 24 hours.  It was a difficult day/night but they give you lots of medication which helped and I wouldn't have been able to manage without it. 

    I went home the next day very tender and exhausted, but could already feel a difference.  I couldn't feel the fibroid that rested near my bladder anymore and during the first week I realised I wasn't waking up in the middle of the night to go to the toilet.  My first period was so light I wasn't sure if it was a real period or not, but all my periods since then have also been very light and I can't believe what a difference it has made to my life.  I only need to wear a normal pad on my heavy days instead of 3 extra long/heavy and then wear pantyliners for the rest of the time.  I have lost 10 pounds and I feel much better.

    The procedure should not be taken lightly though.  Even though it is less invasive it is still very hard on your body.  I went back to work after two weeks but could have really done with staying home 1 more week. And I didn't really get all my energy back till about 2 months later.

    I made sure I thought about all my options before I saw the specialist because they like to only recommend hysterectomy, but once they saw I had made up my mind and seemed informed about my choices they didn't push me.

    Overall I am very happy with the results.  I hope you will be able to find the best one for you.  If you have any other questions.  Do not hesitate to ask.

    Good luck

    • shell69386
      shell69386 angel368

      Posted

      Thanks for sharing that experience. Glad it worked out well for you. 
    • asa93843
      asa93843 angel368

      Posted

      Yes, thank you so much for sharing! I'm so glad that there are options out there, even though it seems you have to be well informed and fight for your right to keep your uterus!
    • murnaloo
      murnaloo angel368

      Posted

      Hi there. I was wondering how long it was before you felt relief from the bladder problems. I've heard that it takes longer to see relief from those than from the heavy bleeding. Most of the comments I see online are from people with bleeding issues -- can't find much about the success for bladder pressure and frequent urination issues. Can you share what size fibroid you started with? Do you know how much it shrunk? Mine has gone from 10cm to 7.5cm in one month. I have no idea if that is good, but I'm hoping it is going to shrink considerably more. I think so much depends on not just the size, but the location of the fibroids, too. Mine is sitting on my bladder, essentially. It would be nice to hear that I just need to be patient for a little while longer!
    • angel368
      angel368 murnaloo

      Posted

      I had 5 fibroids, the largest was a 6cm subserosal fibroid. This is the one I believe I could feel and see in my abdomen. Due to staying in bed a lot and sleeping due to the medication I didn't notice that I was sleeping through the night without waking to urinate until the end of the first week. That was also the same time I realised the fibroid wasn't protruding from my abdomen any longer. So for me the improvements took days, but my doctor says it can take 6 months to a year for the fibroids to stop shrinking.

      So be patient but bring these things up with your consultant when you go to your 8 week check up. Keep a journal of your symptom frequency.

      They won't be giving me a scan since I said everything was much improved but I can tell from how I feel, absence of past symptoms and the fact that I lost 10 pounds that they shrunk a lot.

      Good luck and wishing you a full recovery soon.

    • kiki143
      kiki143 murnaloo

      Posted

      Hi I had exact same issue with my fibroid it was on my bladder and I suffered for a long time. Also a 9.5 cm I had very light menstrual cycle always never heavy bleeding just the pressure bloating and lower back ache. I had UFE on Jan 27 and feel better already less pressure on my bladder it takes a full 3 mos. but boy am I glad I did it.
    • suicra
      suicra angel368

      Posted

      Is this best treatment for women who wants to get pregnant? Have no kids yet. Have a subserosal fibroid. Thanks
    • suicra
      suicra angel368

      Posted

      Hi. So this UFE procedure, fibroid will not grow again? Is this good for women who wants to get pregnant? Do u think its better procedure? 5cm subserosal fibroid.
    • patricia27802
      patricia27802 suicra

      Posted

      Hi I was advised not to have this if you want to get pregnant as they don't know the effects long term of UAE.

      Yes a new Fibroid can form but whether it does depends on age and how near to the menopause a women is.

      I believe that a Myomectomy maybe the best option in your case. But you would need to confirm that with a Gynocologist. Don't let them do a Endometrial ablation though as you definitely can't have children after it.

    • suicra
      suicra patricia27802

      Posted

      Thanks for info patricia. I read through UFE and cant see see any for fertility. Will read myomectomy. Thanks
    • eita58356
      eita58356 angel368

      Posted

      Hi, I had this procedure done in March.  You are right the procedure shouldnt be taken lightly.  I was in so much pain during recovery that I regretted having it done.  The pain was excruciating and lasted for two weeks.  I returned to work the third week after the procedure but only for half days.Two months after the procedure  I was feeling on top of the world. After having to go to the urologist three times to be cauterize and experiencing lots of pelvic pain and pressure and bleeding to not experiencing none of those symptoms..yes I was on top of the world until last week.  That uncomfortable feeling has returned along with the bleeding. I can actually feel the fibroids moving just as before. I'm not sure what's going on but I have a transvaginal test scheduled for next month.

    • susy37071
      susy37071 eita58356

      Posted

      Hi...How are you doing now.Hope everything is alright?
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