infection after UFE
Posted , 7 users are following.
Hi everyone, just to add my own experience of UFE. I had the procedure done on 7th February. The procedure itself was quick and painless, however I did develop severe cramps at the end of it. I was given Fentanyl, but due to an adverse reaction, this was replaced with oxycodone. There was more pain later that evening but it was dealt with using my oxycodone pump. The next morning I was feeling well and ready to go home. I thought I'd be up in a week and felt lucky to have chosen UFE over other alternatives such as myomectomy or hysterectomy.
Unfortunately, things went downhill from there. I developed fever (over 38C) which would just not go away. I'm aware that low-grade fever often occurs after embolisation but this was getting higher and higher. I called the hospital and they said if it goes down with paracetamol, then there is no reason for concern but if it doesn't, come back to us. I spoke to my GP who asked me to get over there to be checked over but I felt too weak to do that. Eventually, after a night of high fever that would not come down, I called an ambulance and was taken to A&E.
The gynaecology team saw me very quickly on arrival. They took blood cultures and did vaginal swabs. They thought I had a infection and put me on fluids and IV anitbiotics.
The pain that night was something I'll never forget. The tiniest movement made my pain shoot up to 10. I was groaning and moaning like I'd never before in my life. I was offered oromorph to deal with the pain but because of my earlier adverse reaction to Fentanyl I was reluctant to take it. My thoughts were I can't believe I'll be able to avoid hysterectomy this time, and to be totally honest I was so scared of sepsis I'd rather have my womb removed.
Eventually, I didn't have a hysterectomy but my seven days in hospital were hellish. Each dose of IV anitbiotics was followed by a burning sensation all over my body which felt like fever but wasn't. I also had diarrhoea and was frequently sick.
A week later the doctors told me the infection was in check and that I was well enough to go home on oral antibiotics. I didn't feel well enough but didn't argue. So I've been recovering at home since. I still have fever (around 38-38.5 C) and feel weak. I'm hoping I'll get better eventually, but it does take an awful lot of time. Doctors at the hospital told me to be on my guard over the next few weeks about discharge/fever because that could mean the infection is back.
0 likes, 47 replies
Liserian jess03277
Posted
Oh my God!! So sorry about this, it sounds painful. I've got fibroids, I was told the biggest was 6.4 cm....I want a non invasive kind of treatment so I was give some tablets to try and shrink them before the laparoscopy( I don't even if know if I'm spelling it right). Suprise, suprise, the tablets didn't work, the fibroid only got bigger. The next time I went, the same gyno wasn't there, and the guy that I saw suggested an injection to try and shrink them...now! Missy here is so scared of needles....I was like 'NO'! He told me to come back after a month...and look into/ think of other options. I was thinking about UFE, after reading your story, I'm honestly terrified, considering what the whimp that I am! Can I just ask, how big was your fibroid? really sorry about your experience.
jess03277 Liserian
Posted
Hi Liserian, I was also given tablets to try and shrink the fibroid (Esmya) but decided against taking them. I wanted a permanent solution, that's why I chose ufe. I wouldn't want my experience to scare people off ufe, after all I had been warned about the risks and knew there was a small percentage that gets infected and might even have to have hysterectomy. But there are other options, have you considered myomectomy? With a fibroid your size you might even be able to have laparoscopic myomectomy. Mine was 10cm, so no chance of that unfortunately.
Liserian jess03277
Posted
Hi Jess, I think the gyno said if she does the laparoscopic myomectomy on me without shrinking it, she would have to pump some sort of liquid which apparently causes all sorts of side effects. I was offered Focussed ultrasound surgery but I said I would look into into it before I go for it. I wanted to see more reviews on it before I agree to it. I'm really stressed out about it all.
heather34376 Liserian
Posted
Hi Liserian, I had the Esmya tablets they didn't work, I also had the Zoladex implants for 6 months (injections) they didn't work either, however you must be from a great area if you been offerred MRI focussed ultra sound as many places don't offer that. It's a pioneering techology, that they say cuts out a few more of the side effects than UFE, no opening to get into an artery for a start. Mine unfortunately is too big to consider it, but I'd be really interested to hear from you about it.
Liserian heather34376
Posted
Hi Heather, I hope the MRI one works; will definately put an update if I go ahead with it. There is not much reviews about it though, I suppose because it's a very new. All the best with yours as well, let us know how you get on.
jess03277 Liserian
Posted
Pump liquid into your tummy?! Sounds awful. I'm not familiar with the other procedures for fibroids (except obviously ufe, myo/hysterectomy). There's a website I've found really helpful, British Fibroid Trust, worth checking out if of course you have't already done so.
heather34376 jess03277
Posted
How are you keeping? Temperature ok? x
How's pain?
jess03277 heather34376
Posted
Hi Heather, many thanks for your interest. I am getting better but very very slowly. I can now walk and drive the car for not very long distances. I'm usually very tired in the evenings and have some low-grade fever. I haven't had a period yet since the operation and am wondering what it's gonna be like (I had very heavy periods before and became anaemic). Pain is less but still there, although paracetamol is enough to give me respite.
jess03277
Posted
I forgot to say that I don't cook, wash up or do any housework at all, except very simple things like making a cup of tea or preparing breakfast. That's about as much as I can manage.
Liserian jess03277
Posted
heather34376 jess03277
Posted
Hi Jess, Thank you for the message, I have been thinking about you & hoping that you were feeling better. I'm glad that you are. Take good care of yourself. Best Regards
Heather
naz86530 jess03277
Posted
Hi Jess, I am sorry you had so much pain and discomfort. I have a 10 cm intrmural fibriod too. Luckily It does not cause any serious symptoms except for a little bit of pressure, and back and leg pain right before my period. What bothers the most is the hard and bulgging unde belly it has given me. I saw the radiologist yesterady, and she showed me the MRI. The fibriod is so big that is expanding from the front to the back of my belly, basically pressing again my spinal cord even. Anyhow, since I am 49 and think I might be close to menopause intially I thought I would leave it alone, until yesterday when I saw the radiolosit. She thinks that is not a good choice and it is better if we take care of it. UFE is my fist choice, but I am also very afraid of infection. The radiologist did mention that larger fibriods are more likely to cause infection, but she also mentioned when the fibriod is as big as 10 cm the liklihood of dislodging is decreased. Overall she gave it a 5% chance. Anyhow, reading your post make me re think this whole thing. I don't even have sever symptoms from the fibriod. It is a hard decision.
jess03277 naz86530
Posted
Hi Naz, thanks for sharing this. I appreciate how difficult it must be for you to make a decision. I, too, was reluctant to do anything until my fibroid symptoms became so bad I felt my life had lost its purpose.
About infection: from what I've read, only a very small percentage of women, around 1%, go on to develop infection after ufe. And only 1% have to have hysterectomy performed to avoid further complications from sepsis. There have been three deaths, two from pulmonary embolism, one from sepsis leading to multi-organ failure. A vast number of women do not develop infection. That may be small consolation if you are one of the unlucky ones, but every operation has its risks.
What kind of reputation does the gynae department have where you are? Have you spoken to the doctors, and what are they like? Some nhs trusts have boards of reviews. Knowing that you will be well cared for should you develop an infection is important.
naz86530 jess03277
Posted
Hi jess,
I'm in Southern California and my doctors are from UCLA. I do trust them and their work and I think if I had sever symptoms the decision making would have been easier. My primary doc is a conservative person like I am and she suggested we watch it and do an imaging in 6 months for any size changes. My gyno is not pushing for anything either except that she thinks it's too big. The interventional radiologist who I saw two days ago on the other hand was recommending to the UFE as she thinks it might get larger. She showed me the MRI and yes it's very big it goes all the way to the spine and I think it does cause some backache specially before my period, it gives me baby bump too which she even showed me on the MRI. I am very close or at least I think I am very close to menopause so I am hoping it shrinks. But the radiologist thinks I am not close
enough. I wished I was a bit less conservative and could just go on with it. Anyways sorry for going on and on and I really appreciate your replies JESS. I hope you are feeling better.
jess03277 naz86530
Posted
Hi Naz, I totally understand your difficulty coming to a decision. If I did not have severe symptoms myself I'd probably have avoided surgical intervention. Are your primary doctor and gynae aware of what the radiologist thinks? What is their response? Also, does he think the fibroid will cause prrmanent damage to the spine or other organs?
heather34376 jess03277
Posted
This is a really interesting question, with a 13-16cm fibroid my gynie has never mentioned permenant damage to spine or other organs. All I do know for the time being is I'm on a weight loss drive as I'm going to have to do something & being overweight won't help anything that ends up being done! I've delayed making a decision for too long, weight loss being to much of a oh "Manyarna" issue. Now I've got to get on it properly & make a serious effort!
jess03277 heather34376
Posted
Hi Heather, I'm not entirely sure but I think I've read that fibroids can cause damage to kidneys depending on size and where they are located. So the fact that you have a fairly big fibroid does not necessarily mean that there will be such damage.
heather34376 jess03277
Posted
Ah Yes my gynie keeps checking scans for kidney damage, but says its ok. How are you keeping this week? Hoping you are seeing an improvement as more days pass. Keeping you in my thoughts & prayers for a safe speedy recovery. x
jess03277 heather34376
Posted
Hi Heather, that's really kind, thank you. I'm indeed getting better, slowly but surely. My temperature is now normal, I spend less time in bed, I've started doing some light tasks around the house, and I can stay out for longer. It seems I had a lucky escape following my infection! I've missed a period, so I don't know whether bleeding will be lighter from now on.
heather34376 jess03277
Posted
Hi Jess, Really pleased to read your reply. you've been through enough already, so glad its all normalising for you. Great news x