Uterine Fibroid Embolsation

Posted , 4 users are following.

Hi all I am after a little honesty. Are there any Ladies out there where UFE has not worked. Finally got my appointment through 6 and a half months post op. It says at your appointment we will discuss treatment options.. So they are saying it has not worked. So just wondered if anyone else has had it done and it has not worked. Hope everyone is well

0 likes, 7 replies

Report / Delete

7 Replies

  • Posted

    So sorry to hear that Patricia. Have you asked them directly. I know that my doctor told me if it wasn't a success they can try it again once before going to more drastic measures. Good Luck, Sweetie biggrin

    Report / Delete Reply
  • Posted

    Hi Patricia,

    I have followed your updates over the past six months, so I know what you have been going through. I think I replied to your posts a few times, as I had my UFE not long before you.

    Did the doctor say it didn't work, as in the procedure was not a technical success? Or, did the UFE work, but your symptoms are not alleviated and, thus, it was not a clinical success? I think if it was technically a success -- e.g. your arteries were successfully blocked, but the fibroids did not shrink enough -- then they don't try the procedure again, I believe.

    I had my UFE on 21-12-15. My fibroids shrank 70%. So, my UFE was a solid technical success. However, my symptoms did not change. The last thing I wanted was a hysterectomy, which is why I tried UFE. Over the past six weeks, I saw four more doctors, in the UK and in the US. All of them told me why a hysterectomy was the option most likely to relieve my symptoms. I have read on this forum that a woman should stick with what she wants and not be talked into anything she doesn't want. I was not talked into anything. I appreciate that the doctors laid out what other procedures involved, what the potential benefits and what the potential negatives were. Ultimately, I agreed that a hysterectomy made the most sense, given my situation, and I had a hysterectomy two weeks ago.

    This may not be something you will even consider, but I will say that my symptoms (mainly bladder related) were vastly improved just a day after the surgery. My abdomen is visibly flatter - my husband commented on that just a few days ago without any prompting from me. And, as for my periods, those will never be heavy again. I am 46 with no kids, so I came around to this decision because my husband and I never planned to have kids and definitely wouldn't be having them at our age. I kept my ovaries, so I did not go into menopause.

    Because the UFE shrunk my fibroids and, thus, my uterus by so much, I was able to have a hysterectomy via keyhole surgery instead of via open surgery with a massive abdominal cut, which is what was offered to me pre-UFE. That was enough to make me feel the UFE was not worthless. With the UFE procedure, I was clicking the morphine pump every 5 minutes -- it was so painful. The laparoscopic hysterectomy was a piece of cake compared to the UFE. I felt completely back to normal within one week (although I am aware that I need to take it easy for several more weeks).

    Between when I booked the surgery and when I had it, I only had one day where I second-guessed myself. That evening, my period started a few days earlier. This was just a few days before the surgery, so for those three days, I had heavy flow, cramps and some blood clots. It was almost like a sign to convince me that I made the right decision.

    Also, I talked to friends, friends of friends, and friends' moms who'd had a hysterectomy, from 40 years ago to last year. Every single one of them told me that their lives had vastly improved after it and most of them said they'd wished they'd one it earlier. These women must not comment online, because everything I've read online made it sound like the worst decision possible. That is one reason I am now commenting, as I want women to know that, for a lot of women, the procedure is right.

    That does not mean it is right for everyone. I have several girlfriends who had UFE and it solved all of their problems and if I had to do it all over again, I would still try UFE first.

    If I remember correctly, you are not considering hysterectomy as an option, but I thought I'd share my experience with you. Like you, I thought UFE would be the answer, but, unfortunately, for me it was not. I suspected this at the three-month mark, but by six months, I knew. Every doctor I’ve spoken to has said after six months, you generally get no more shrinkage. Given that my symptoms did not change much at all, I knew things would not get better unless I tried a different treatment.

    I’m sorry for not having an answer that you probably want to hear, but you did ask for honesty. ;-)

    Best of luck to you!

     

    Report / Delete Reply
    • Posted

      Hi Mumaloo

      Thank you for your reply and your honesty. I have not yet has my appointment with the Radiologist yet but I know it's failed.

      I know what you are saying about the Hystererctomy but j still don't want it. If I'm being honest I don't trust a Gynocolgist to get it right also they want to remove the Cervix which I am against and the recovery is longer and also I know people who have had nothing but health problems fiollowing Hystererctomy.

      I'm glad yours went well though. A Hystertomy is not for me though I won't have major surgery again after my Throidectomy went wrong. But I appreciate your honesty and I'm glad your are ok.

      Report / Delete Reply
    • Posted

      I've been given a 50% chance of sucess big fibroid small arteries - so I have sought a second opinion about my chances with UFE by someone more experienced. Weither there is anything in it or not it isy understanding that it does matter who does it. therefore if im going to go through the agony of ufe i want another opinion to give me more confidence it is worthwhile & the int rad doing it has done lots with good sucess. So i'm waiting to see what he says then will make a decision. but like you i'm thinking even a 40/50% reduction would make the success of a keyhole operation more likely if necessary. It is sad to red this ladies ufe hasnt worked, maybe a myomectomy is her next option.

      Report / Delete Reply
  • Posted

    Can you be more specific on how exactly it "didn't" work? Like are you saying you still are having the same symptoms with no relief? Or they did not shrink enough? Or the blocks did not take? I think it can help us give you more direct answers.

    Report / Delete Reply
    • Posted

      Hi roc

      The UFE has improved my periods so I don't have gushing periods any more. But they are now only 2-3 weeks apart. Also my belly has started getting bigger so that tells me it's growing again. I have an appointment with the Radiologist in a few weeks. In his letter it states and I quote to discuss treatment options. So I'm not very confident it has worked.. The only improvement is my energy and I were less but that alone is not enough for me so I am disappointed I look 5 months pregnant again.

      Report / Delete Reply
    • Posted

      I see. Well lets hope for the best and prepare for the worse. Whatever your decision may be, especially if it has grown unbearable for you, then you will have to take action. Perhaps this next one will be the one to resolve your issues. Too bad you can't get any info over the phone! Hopefully your appointment is not too far away where your brain gets to do nasty lil thiings with your thoughts and worries.Again praying for your strength and resources to make the best decision for you! Please keep me posted.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up