Post Fibroid Embolisation
Posted , 102 users are following.
If my experience can help I would like to share this to other sufferers of fibroid.
Having decided not to try for a family after having had 4 failed IVF's, I just like my life back without pain, bleeding & generally miserable every month.
I have ticked all the boxes that my gynae suggested pills, Zoladex, hysteroscopy-failed mirena or not even had it despite undergoing most uncomfortable impromptu procedure.
I cannot fault any of the staff who dealt and performed my procedure, they were excellent.
However, soon after the procedure my pain was not managed properly & I was in agony. I suggest that premedication of Voltarol, paracetamol @ anti emetics should be in place. Then as soon as the procedure is completed a bolus of 10 mg Morphine from the PCA should be initiated.
Diet wise eat less & high fibre to avoid abdominal discomfort.
Rest is vital.
The first week was I called 'a week of pain'.. The cramping was severe and round the clock pain killers, had to take 'oromorp' prescription.
Second week, things are getting better but constantly tired.
Third week, cramping started & slightly bleeding still very uncomfortable, guess this is my normal cycle time & already showing signs of fibroid shredding.
I'm still in this week of recovery and hoping that with what I have gone through the result is good in three months time.
UFE is less invasive but should be treated as having had major procedure because whilst there is no open wound, things are all happening inside you and only you can feel the pain!
8 likes, 279 replies
susan10021 nora71815
Posted
Hi
I just had UFE 3 days ago. My experience is that the procedure itself was not particularly painful - the iodine in the veins felt warm and a bit wierd but i was sedated before they started embolisation (i asked for it) and there was mild cramping.
However for the next few hours it was very painful and i made full use of the morphine which helped. I did start feeling sick and couldnt eat a thing. (I stayed overnight in hospital and the nurses were great -
monitoring my heart rate, temperature regularly etc so felt i was in good hands). The nurses gave me anti nausea stuff which worked quite quickly. The following day i ate a bit of toast and started taking other painkillers (ibuprofen and paracetemol) so i was less reliant on morphine and i was prescribed these when i was discharged plus codeine.
As others have said - it is painful but it is also not unfamiliar since it's like bad period pain so it's really just a stronger version of something you've already coped with. And I have been sure to take the painkillers before i am in too much pain -i had to insist on the codeine while i was waiting to be diacharged.
I am still in my pyjamas, resting uo. Have found heated pads/hot water bottles help.
It's still early days for me but I want to reassure others that it's not terrible and you shouldnt be put off having the procedure if it looks like the best option for you... Good luck! (i'll try and remember to post again about the rest of my recovery.)
sarah45493 nora71815
Posted
kristen17087 nora71815
Edited
Hello, wow I have been searching the internet for other alternatives and read a little info about UFE. I have had fibroids for about 5 years well maybe more but was seen by a dr around that time. Since then I have had heavy bleeding and about 3 years ago had an IUD for the bleeding. It never really worked and I just continued with the inconvenience of bleeding. I was never told how rapidly they would grow and about a month in a half ago. I bled so bad and had severe clots I thought I was dying. I about passed out and felt body drifting very scary. I finally went into emergency and they did blood work. you are supposed to be at 14 to 15 for blood and I was at 4. If I wouldn't have went in lets just say would be posting this. I had to be admitted and had 4 pints of blood for the transfusion. They did my MRI and test I have one fibroid that enlarged as if I'm 5 months pregnant and over 100 small m&m size ones growing. I was only given options for abdominal hysterectomy and I am devastated. I have had my kids and I am over 40 so they acted like no big deal to just get it done. I have been so sad and this has taken over my life with worry. I am supposed to go get another opinion to day to see if I'm a candidate for UFE. I am terrified reading the stories though I must admit but the hysterectomy scares me as well to lose part of my insides. the time off work and from what I read there are ugly and scary side effects as well. I am so confused but I am feeling pushed into a hysterectomy by doctor and by some people that know of this and say to me no big deal you have had children. I just want to try other alternatives and I wish the ladies on here a healthy recovery. I feel a little better hearing some stories and scared too. I just starting to read these post so hope I'm on track I haven't followed some of the newer post for recovery but plan on looking for the success in all the goodness that comes from the procedure. Love and prayers. I think that last post said 3 years ago.
BellaOne kristen17087
Edited
Hi Kristen,
Give the UFE a go. I pray you are a candidate and that you get a very good radiologist. I had mine done 3 months ago and I am on the way to mending and getting my life back. My OB made me feel like a hysterectomy was my only option. Her attitude was you are over 40 what's be big deal.....and I said to her, there is another option I want to try and I also want to keep my lady parts. She sent me to another OB who tried to convince me. I held firm and said I will NOT be having a hysterectomy.
Yes, with the UFE the post pain was intense, but in hing sight they could have prepared me better for it...like given me stool softeners prior, and laxatives couple of hours postop. It was the gas pain that was the worst. But I tell you, it was the best decision. I am no longer bleeding heavily and not anemic anymore. My stomach is shrinking everyday as the fibroids shrink. The recovery period is a lot shorter than for the hysterectomy.
kristen17087 BellaOne
Posted
Thanks so much for the reply I don't see much support for woman for this situation and it's nice to hear from other woman. I will keep fingers crossed and I am glad that you are feeling better as time passes. I guess time is in every procedure but it gives me hope.
Destin1 kristen17087
Posted
I had mines done a year in February. I'm glad I had it done I feel much better and my uterus has shrunk a lot. If you do decide to go ahead with it make sure the Dr is highly recommended and he has your pain meds ready asap. I had to wait and was in agony because it was not ordered before hand. Also make sure you have something for constipation if your giving pain meds. Everyone's body responds different so you might not have any of the symptoms afterwards. Good Luck.
kristen17087 Destin1
Posted
Destin, thank you for the feedback. That is great that you have great results. I am sorry to heae about the pain before the relief. I will make sure to ask questions regarding the pain meds. Thanks for staying up to date with us newer people growing through this it's so important because this is scary and being brushed off lome it's no big deal is sad.
Goddess_Goddess kristen17087
Posted
Hey, I had my procedure on 1/23/18... My doctor was able to go through my wrist instead of my upper thigh. The procedure was painless. I has a pain morphine pump, starting a 0.5mg every 6 mins, then had it increased to 1.0 mg every 8mins. Everything was going smooth until they took me off the pump and didn't regulated my oral pain meds for my pain... So I stayed in the hospital 3 extra days until my nurse and I found an oral pain med that worked. Which was two 15mg of morphine every 6 hours and Motrin 800mg every 8hr. They also gave me something for dizziness and nausea, which was caused by the Morphine. They gave me tons of stuff for my bowels and gas. I also walked down the halls to release the gas..
I only used the Morphine for about 3 days, then OTC Motrin 1600mg. I also had discharge and spotting. My Cycle came on 2 days.It was light to medium. Which has a big change but lasted 8 days and the discharged continued. My 2nd week, I had the flu like symptoms, hot and cold flashes, and felt fatigue. I took cold meds and vitamin C. I'm in my 3 week. I don't need any pain pills as long as I don't do to much or stand up for long periods of time. My cycle also started again. My stomach is going down. If it wasn't for my observation doctors, whom had no knowledge of UFE, and totally underestimated the pain involved with this procedure, I would've had a better experience... But so far so good..
kristen17087 Goddess_Goddess
Posted
Goddess Goddess
Wow that sounds horrible the pain. I am sorry you went through all of the suffering. Glad to know you are better. I go this Thursday so yes I'm nervous. I asked the Dr about pain meds he said yes before and after I'll be given meds. I hear pain after is no joke.
marva62245 kristen17087
Posted
marva62245 nora71815
Posted
kristen17087 marva62245
Posted
I'm so sorry
Yes it is bo joke. They have me muscle relaxer so it knocked me out.
marva62245 kristen17087
Posted
I finally feel like myself it’s been a month now, I’ve never in my life experience cramps like that.🙄😩
kristen17087 marva62245
Posted
Ya it is like having labor pains. I thought i had an infection bcause the chills and night sweats they said it was normal as long reg temperature. I'm fine now but whew it was brutal. Glad to hear your better.
susan10021 nora71815
Posted
hi - i had my Uterine Embolisation done 3 weeks ago and I am finally starting to feel normal! You will get there too so don't lose heart!
My recovery has felt like quite a journey and i realise that i had hugely underestimated the procedure, the impact on your body and the process needed to recover. While UAE or UFE is not as intrusive as a hysterectomy or any other type of surgery, it is still a major procedure and you need to give yourself time for the body to recover and heal. Most importantly, all of us are different - our fibroids are different and our bodies will react differently too. So don;t assume that 2 weeks will be all it takes.
I'll say something brief about how the process was for me and then share some tips/reflections that might help others.
The procedure of embolisation itself was fine - I felt nervous going in but a nurse reminded me that I was in a very safe environment and I realised that they would look after me whatever happened. (I mean if they can't help you in hospital then where can they?!) I had lots of morphine afterwards which in the end made me feel nauseous but the nurses were lovely and were there in the night when I needed them. The next morning, i even felt nervous to walk to the toilet but the nurses were walked with me and I was soon fine to walk out of the hospital and get a taxi home.
I spent a few days in my PJs at home - not eating a lot and taking all the meds they'd given me (paracetamol, ibuprofen and also codeine). For week 1, it was really important to have my husband (or it could have been a friend or neighbour) around to make tea/soup and generally keep an eye on me. After a few days i stopped the codeine as i realised it made me feel a it wierd and 'zonked' out. I mainly felt weak with just a bit of cramping and only a bit of discharge.
Then just as i hit the 2 week mark i developed an infection -- I felt shaky (teeth chattering, knees knocking together), temperature, hot and cold, palpitations. Since this is something the hospital said to watch out for, I decided to go to A&E later that day and they saw me straight away and gave me antibiotics via IV. I was then checked into a ward so they could monitor me and stayed for a day. I was given some oral antibiotics (augmentin) to take after I checked out.
It was over the next week (week 2) that I started to get the flu-like symptoms (headaches, slight fever and then cold shivers, sore lower back) that you are told to look out for. My discharge (bleeding) got a bit heavier and lasted for about a week - not sure if it was an earlier period or not. I worried that my symptoms indicated the infection had got worse despite the antibiotics I was on, but had more blood tests and lots of reassurance from a doctor that these symptoms were in fact part of the process of the fibroids dying. I felt really quite rubbish (I wasnt in pain but just did not feel well) and could do very little apart from binge-watch films. I also lost my appetite but I think that is natural when your body has so much to deal with. And I was feeling really anxious - I realise now that my hormones had dropped after the embolisation - so that might have been the reason for this.
I am now in week 3 and my main symptoms are cramps but ibuprofen and also hot water bottles/heated pads are helping. I've started going out for short trips (to the hairdressers and friends) and it is manageable. If i continue to feel okay, I will look to return to work next week - probably around the 3 and half week or 4 week mark. So in sum, it has been a journey with many different phases.
A few bits of advice if I may...
- call on friends and family to help both practically and also emotionally. Just having someone to come and sit with me made a difference (have a list next to your bed of people to call on).
- Don't underestimate the importance of rest - which means doing very little indeed and saying 'no' to most things. I had to reschedule my return to work and cancel various things I'd felt I'd be up to going to. Online grocery orders have been my friend.
- Use everything you have at your disposal - medication, things that will calm you (candles, meditation, Netflix, positive sayings on PostIt notes!). You don't need to try and be a hero!
I hope that helps! My tummy has already gone down a bit, i can barely make out where the incision was and I am feeling optimistic and happy that I've done this. I am on the mend and proud that I have got here. You will too. Good luck and try and go with the flow if you can. Hugs! Sue
kristen17087 susan10021
Posted
I can use all the advice and info this can get pretty overwhelming. I wish you a great healthy future❤