Uterine fibroid embolization (UFE)

[ladytramp]

Hello, I have multiple fibroids, largest around 10cm. I am having to decide between UFE and Hysterectomy. I am surprised at the recurrence of post-UFE surgery, mostly due to infection following necrosis. Also, I am scared about the septis related death of a patient reported. My research has not left me very optimistic about UFE.

Have you had UFE? What's your experience, and would you recommend it?
Thanks.

I had it 4 weeks ago today so very early days. Single fibroid of 9 cm. I was very worried though I rationally knew risk of infection only about 2% as the only person I know who had it had to have emergency hysterectomy. She said though in hindsight it was 3 sets of GPS failing to pick up symptoms of infection so I am very vigilant.

With regards to the death my view was that it was one death (not minimising a person’s life) but I think the risks from a GA for a hysterectomy need to be taken into account though I don’t know the figures. Also there is a lot of awareness of sepsis these days and I suspect this may have been in the early days of the procedure.

I decided to go for it as my only option surgically was an hysterectomy with vertical incision and I didn’t want the recovery time if I could avoid it so decided to try least invasive first and hope that if did need surgery the UFE might shrink it enough to give other surgical options.

Obviously at this point to early to know much but I think the pressure on my bladder has eased up and i’m Going to the toilet less. Just done a walk where I would usually need to go straight after but haven’t yet. Not entirely sure what’s happening with my periods. I started bleeding 2 days after procedure and stopped a couple of days ago, will have to see what happens and will be interested to read other people’s experiences.

I will say I was close to chickenimg out on the days but on balance at this point pleased I had it. We have builders in and I wouldn’t have been able to do what I’m doing at this point after a hysterectomy.

I had this about 18 months ago.

My experience. Well, I found it incredibly painful afterwards, and I have a very high pain threshold. But I was kicked out of hospital without any painkillers, so make sure you get some. I had no infections though. It took me much longer than I was expecting to get back to work though and I was off for a month rather than the 2 weeks they suggest.

It has shrunk my fibroids - the main one was about 12 cm I think. My periods have gone a bit strange, but I no longer have any clots and they are a lot lighter, although they last longer. I no longer get any period pains at all - it just feels numb. My tummy is a lot flatter too. When I went for a follow up there was another one there which had either grown or had been missed, but I haven't had any problems from it.

If it had grown back I wouldn't have it again, but I'm glad I had it done first time. I really didn't fancy a hysterectomy as the Gyne told me I would need to have a large, possibly vertical incision due to the size of the fibroid.

Let me know if you want any further info

Ooh, I'd forgotten about not needing the loo all the time!

That’s interesting to read Magichippo. I’m still struggling a bit to get back to normal routine and tire very easily. Have to say I also found it very painful and had previously cooed for years with gallstones. Unfortunately the morphine made me sick despite the anti sickness drugs.

It's the tiredness isn't it? I'm usually really active, but for the first 2 weeks I couldn't move from the sofa.

I’m so glad you said that! Week 3 I went back to running 3 times in the week somehow which with hindsight was not sensible but I felt alright to do it at the time. Suffering for it now and slightly dreading overseas trip in a months time as will have to speak another language all the time which i’m not fluent in and can’t imagine having the energy to do it at the moment.

Thanks for replies, relaly helpful. magic, do you mind me asking how much have your fibroids sunk?

shrunk not sunk!

I think the big one went down to about 8cm. I was surprised because I used to be able to feel them through my tummy, but can't now.

Bump. Interested in other experiences

Hello post, how are you feeling?

Bump for others as I now have a date for this and still worried.
@postnotinhaste do you mind if I ask you for an update?

Bump for any last minute advice...

@ladytramp Hi, did you go ahead with it and if so how did it go?

Hi @desenchanten, I am two years and 5 months postop now. The procedure was successful, very painful two days after and a week to recover at home with lots of discomfort: painkillers, meds for nausea and laxatives! The problem with me is that 10 days after, the dead fibroids became infected. I won't go into detail here but I was in and out of hospital, pumped with different antibiotics, changed hospital because I was unhappy with the way they were dealing with it and finally landed in the hands of a good gyno and got better. I was unlucky with the infection but the results in the long term have been amazing. My fibroids reduced radically in size (average 70%), one came out! 🙈 The better it works the more painful the postop is. A year later my periods stopped which made me even happier (I am over 50). Another problem I had 7 months on was pain in the groin where the incision had been, again apparently unlucky and very rare. That has now solved. Basically, in spite of my ordeal in the 3 months after OP, I don't have any regrets and I kept my uterus intact. My belly feels like they were never there. I hope this helps.

I know this is an old one but my consultant flat refused to do this operation and I had to have a hysterectomy
I didn’t know it was a good option

Yes @Menora lots of consultants are hysterectomy happy and won't inform patients about options. OTOH the embolization is not always possible, there are factors like size and position of the fibroids. I hope your hysterectomy went well. My sister had one because of fibroids and is very happy.

@Menora

I know this is an old one but my consultant flat refused to do this operation and I had to have a hysterectomy I didn’t know it was a good option

It won't work on all types of fibroid. They need to be in the uterus not on stalks. I had it done on Saturday and am feeling pretty ok so far. But initially it was much more painful than I expected. Am chugging back the laculose!

I had mine 1 month ago. I have several fibroids. Had a relatively light period two days after discharged. Some fever but not much pain. Took ibubrofen and was OK. Still worried about the possibility of infection as the type of fibroids I have present a higher risk and I have some discharge.
I've lost weight (around 3 pounds!) and my stomach is so much flatter what was pleasant surprise.

Forgot to add my period is late (so a bit concerned about early menopause but I am past 50) and the pain I had constantly from the fibroids is completely gone. It is a weird sensation as if my uterus is gone quite.

@FootieMama it sounds like it was very successful. Good luck, hope you're keeping well. My period stopped 9 months after the surgery. It has been a huge improvement all in all.

Mine has also been great. Three very light periods so far!

I had mine in November and no periods in December. Not sure if it is a good sign. In the past when I missed a period I would bleed for an entire month on the next. I will post how it goes. So far I am very happy with the procedure.