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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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  • Libra787
    Libra787 asa93843

    Posted

    I had a UFE in December and yes I would recommend it, despite a few challenges post-surgery. 

    I'm 44, no children and have had 2 hysteroscopic myomectomies and 1 open myomectomy in the past 8 years.  Most recently I had multiple med-large subserosal, submucosal and intramural fibroids so it was either UFE or a hysterectomy.  My symptoms had gotten out of control (crazy heavy periods, anaemia leading to multiple iron infusions and a blood transfusion) so doing nothing was not an option.

    I had my procedure on the NHS and the procedure went well.  Although you're awake during the procedure (which freaked me out at first) they sedate you so you're not really alert and I felt no pain.  

    Post surgery the pain was a lot worse and at times that first night I felt I needed more than the morphine (that said the morphine also made me throw up a few times so watch out for that).  

    Once discharged the next 4 days were a bit horrible as it turns out I had a reaction to the painkillers I'd been discharged with (couldn't even keep water down!).  It took me a few days to figure out it was the painkillers and not just part of recovery, and when I ditched them in favour of strong ibuprofen, things improved within 24 hours.  

    The worst thing for me was the discharge - which I was told to expect as it's a sign of the fibroids breaking down.  My discharge became heavy and malodorous by the 2nd week.  I saw my GP and tested negative for infection but I insisted on a blood test.  Following the results I was put on antibiotics (as a precaution) and over the next few days passed multiple fibroids.  The first was large and a bit of a shock but thereafter they were much smaller.  With the fibroids went the smell which was a relief but sadly the discharge is still ongoing.

    I haven't had a period yet (I don't think).  I had bleeding for a couple of days but based on my previous periods, I daren't believe that was it.  I'm back at work but still not 100% (be prepared for that) - as another poster said, it does take longer than 2 weeks to get back to normal.  I still get tired easily and haven't regained my apetite (not complaining though as I've lost a stone!).

    My follow up MRI isn't due for a few months but the good news is my tummy has shrunk (a bit).  It's still early days but I am glad I had the procedure and if I'd had the option previously, I would have had it rather than an open myomectomy.  

    I hope this helps with your decision.

    Best of luck xx

    • kimberlyn66341
      kimberlyn66341 Libra787

      Posted

      Thanks I have mine Tuesday can't wait have heavy bleeding huge clots that look like I'm having a miscarriage just want some relief

    • m68202
      m68202 morayma30477

      Posted

      My case is complicated by Endometriosis and chronic Fatigue syndrome, so I’m not sure how relevant it is for you.  I was on progestin to stop periods before my procedure but I’d been spotting daily for 5 months.  After the procedure I ended up with high blood pressure and we still don’t know why.  I stopped the progestin in case it might be related.  I’ve had 3 periods since and they have not been lighter or less painful than before the procedure.  I can feel that the largest of my 25 fibroids is not as big, but I just had an ultrasound and uterus still measures as big as it was 2 years ago.  I’m still hopeful that it’s early and the fibroids will still shrink?  I’m not sure what to say.  The ir doc said he was able to completely embolise the arteries, so I should get relief eventually.
  • Niki1313
    Niki1313 asa93843

    Posted

    I am scheduled for Embolization on Jan 27. I did a lot of research and this is the best option for me right now. I have multiple very big fibroids (24cm uterus) and I already had a myomectomy 3 years ago so it's obvious that my body likes making fibroids as I ended up with even more fibroids than before the surgery and I don't want to have to have a surgery every 3 years, so I want to give Embolization a try. I've also tried every diet or alternative treatment out there and nothing seems to work. I also tried 2 rounds of fibristal back to back. The radiologist who is going to do my Embolization procedure was very confident and said that this is a very effective treatment now and it will also not affect my fertility as they once thought they would. I'm happy to keep you all posted on how it goes. Wish me luck!
    • angel368
      angel368 Niki1313

      Posted

      Good luck Niki,

      Make sure you clear your calendar, listen to your body and rest. I hope it's a success. Let us know how you get on.

    • asa93843
      asa93843 Niki1313

      Posted

      Yes good luck Niki! Looking forward to hear about your update! smile
    • angel368
      angel368 Niki1313

      Posted

      Hi Niki,

      Just wanted to wish you all the best for tomorrow and wishing you a speedy recovery.

    • Niki1313
      Niki1313 angel368

      Posted

      Thank you so much! I'm a bit nervous, hope it all goes well. I will post an update afterwards.
    • Niki1313
      Niki1313

      Posted

      Hi everyone, I had the UAE done on Wednesday. Thanks for all your kind wishes smile

      They had trouble getting the catheter into the uterian artery (apparently mine was bent, go figure!) so my procedure took over 2 hours even though it's normally 1 hour. I was worried the whole time that they are going to give up but they kept trying different methods and finally got it in!

      Right after they released the plastic beads or whatever I started feeling the cramping. I had a lot of pain that first day and night but it was manageable. Since yesterday I've been feeling so much better and actually stopped taking all pain meds (they were making me drowsy and nauseous) except for iboprofen which is for inflammation.

      Now it just feels like period cramps on a bas day - which I'm used to after many years of dealing with fibroids). I'm really grateful that I'm feeling OK but I'm also worried that perhaps the procedure didn't really work and my fibroids aren't dying. I haven't really had a fever either (except for a very low grade one last night that resolved quickly after taking a Tylenol). Any thoughts?

    • angel368
      angel368 Niki1313

      Posted

      Hi Niki,

      So glad your procedure went well and you're feeling nuch better. Remember to take it easy and rest up, your body has been through a lot.

      I didn't have a temperature either but my procedure was pretty successful.

    • patricia27802
      patricia27802 Niki1313

      Posted

      Yes good luck and allow a bit more than 2 weeks cos it does knock you for six x

    • murnaloo
      murnaloo Niki1313

      Posted

      Hi there Niki,

      I had my UFE in December. Like you, I worried that it didn't work b/c my pain only lasted about 24 hours. After that, I didn't even need paracetamol. My primary problem was horrible bladder problems. It's six weeks out and those have not improved. So again I was convinced that I was in the minority of people who had a failed procedure. I saw the doctor recently and my 10cm fibroid is now 7.5cm and it is definitely dead with no blood supply. The dr. insisted that it is early days and to be patient. That's easier said than done, but I do think it's good advice to hold onto, especially if you start to feel am down or pessimistic. Just give it time!

    • Niki1313
      Niki1313 murnaloo

      Posted

      Hi Murnalo,

      Thanks for your response, it's very good to know that the procedure worked for you and that it just takes time. That makes sense. Like you, I stopped taking pain killers after 24 hours. I still have some mild pain/discomfort, especially since I just got my period as if nothing had happened! My friends think that I've just built up a really high pain tolerance! Anyway I hope that mine are shrinking slowly too so I can at least get rid of the huge bulge. According to my last MRI my uterus was the size of a 25 week pregnancy.

      Oh BTW I'm having some bladder issues too, hopefully will go away.

      Thanks so much for sharing your info and all the best.

      Niki

    • jenmac18
      jenmac18 Niki1313

      Posted

      Hi Niki,

      I had my UFE the day before you did, and on Day 4 of recovery I feel good and bad.    I have 2 large fibroids (10+ cm), and the procedure took 2 hours, only because they had been drawing from so many vessels the doc had to put in 10 doses of little bally things.  He said my artories were really easy to move around in (too much information.). A few times  I remember telling the doctor i felt pain, and i heard him say 'give her 5 cc's of whatever'.  But the crazy thing is that I honestly thought the whole thing took 20 minutes.  Twilight sedation is so weird!   First night pain was constant but manageble, and i was released the next morning, 24 hours after my surgery,

      Now 4 days out the intense cramps have definitely subsided, as has the discharge, but they have given way to this general feeling of pain and stiffness all over my abdomen whenever I move around.  I'm also very impatient, and bored, and decided to take my dog for a half hour walk today and am now exhausted.  What other posters have said, that despite the miminal invasiveness it's still major surgery, shouldn't be taken lightly.  it is hard on your body....

      good luck with your recovery. I'm right there with you. 

    • Niki1313
      Niki1313 jenmac18

      Posted

      I just sent you a message on another thread before seeing your response here! Thanks for sharing your experience. Oh Twilight sedation is very strange indeed.. I remember mumbling things and they couldn't even hear me and I'd give up and just fall in and out of sleep!

      I hope the pain and soreness resides soon and the fibroids shrink as much as possible. I think we will both be happy with a 50% reduction considering the size.

    • jenmac18
      jenmac18 Niki1313

      Posted

      It must be fate that you sent me a message not even realizing that I had also replied to you directly!   Oh yes, if i can get these bowling balls down to half their size I'll be very happy!  And the though of not getting my period for a few months is like Christmas everyday!  

      How are you doing on Day 4?   I must say i felt as clear headed yesterday as I have since before the surgery, however this annoying stabbing pain on my right side has me a bit concerned, so I'm going to call the radiologist tomorrow.  It hurts with every step.  If this is gas, it's the worst gas I've ever had!

    • Niki1313
      Niki1313 jenmac18

      Posted

      Where is the stabbing pain exactly? Do you feel it only when you walk? Do you have a fever or any other symptoms? I would be surprised if it was gas considering you mentioned you don't have constipation etc. Maybe it's the uterus readjusting itself as it shrinks?

      I feel better today! Although I'm having weird tingling in my legs and feet. I read that it could be nothing or it could be nerve damage, or in some cases a circulation problem if there is any discolouration of numbing but that's not the case. I'm just gonna wait it out.

      No pain meds though! but I still have my period (or whatever it is) so hopefully once it stops I will notice some of the bloating go away too.

    • jenmac18
      jenmac18 Niki1313

      Posted

      Funny, I feel a lot better too.  The stabbing pain has lessened greatly. It's  still there, but seems to be resolving itself.  Its on the right, kind of under my rib cage on the side.  I would be surprised if it were gas too, but I guess it could be.  No fever whatsoever, so who knows?  I like your idea of the uterus readjusting....lets go with that!
    • Niki1313
      Niki1313 jenmac18

      Posted

      So I developed a high fever starting on Monday (day 6 post-op) and it hasn't stopped. The doctor prescribed me antibiotics but it didn't really work so they actually asked me to come to the hospital and stay over night to get antibiotics through IV. I'm still at the hospital. It's been a pretty tough few days. They think I have an infection but they don't know where is it. They did a thorough ultrasound and they didn't see anything alarming but it could still be an infection in either the uterus, bladder, of kidneys. The other hypothesis is that because my fibroids were really big and now they are dead (yay!) the large amount of dead tissue has triggered this response from my immune system. I hope it's the latter!
    • patricia27802
      patricia27802 Niki1313

      Posted

      As long as you are not in pain I imagine that it will be as you say a response from your immune system and at least the tissue is dead. Hope you get home soon x
    • suicra
      suicra Niki1313

      Posted

      Hi. Would you recommend UFE? But have no kids yet. Have 5cm subserosal fobroid. Causing me pain and heavy bleeding. I think i will try next esmya then thinking of UFE or myomectomy if esmya wont shrink it. Any suggestions what to do? Diet is very important too. Struggling but under control. Hope u recovered well.
    • Beth0810
      Beth0810 Niki1313

      Posted

      Niki, are you ok now? What was the infection? Would you still recommend UFE? I'm having it Monday and I am so worried after reading some things here.

    • susy37071
      susy37071 Niki1313

      Posted

      How was the embollization effect?Did it help you....It's 2 years now right?

      Pls do let me know....waiting for your reply.

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