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Post Fibroid Embolisation

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nora71815
nora71815

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

279 Replies

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  • nomkhosi93696
    nomkhosi93696 nora71815

    Edited

    Hi Ladies

    ?I have done my UFE in December, my problem is that I have pains during my periods and 7 days after my period,i have went for the check up and my Dr said everything was normal

    ?Has anyone experience this never ending pain after periods cause I am tired of using pain killers an a bit worried although the Doctor said there was nothing wrong

    ?I am also having some old blood coming out after 10 days of completing my periods

     

    • kristen17087
      kristen17087 nomkhosi93696

      Edited

      I had UFE done feb15 2018 I do t have pain but I hear that can change and depending on size of fibroids when they pass it can be painful. The old blood is the fibroids dying I do have that happen to me. If it gets severe they need to check. If not go to another Dr. Good luck.
  • Galigh
    Galigh nora71815

    Edited

    I am so glad i found this post. I had UFE 4 weeks ago and I've been quite poorly this week. I read up on recovery before the procedure - seemed too good to be true!

    I went back to work far too soon - I took just over a week off.

    The pain that first week was like early labour pains but constant !! That said - at least you could take painkillers! The following week i went back yo work - only because I could work from home. Very very tired. I thought I'd turned a corner by the third week - yet still very very tired - the kind of tired at the start of pregnancy. Then by this 4th week ...

    flip ... I passed one of the fibroids ... it was like Hades down there.... my temp went through the roof and I'm now on antibiotics - and back on painkillers.

    My fibroids were large - the biggest 9.5cm it was either this or Hysterectomy. So I'm sure this has been the right option but I really think the recovery advice is totally played down.

  • julie70014
    julie70014 nora71815

    Edited

    Hi all,

    I thought I would give you my experience as of June 2021, and from Barcelona in Spain.

    I am 44 years old, have 2 kids and have 3 fibroids, one of which is 9 cms- bear in mind the uterus measures about 7.5 cms. I have been controlled for over 10 years for these by my gynae. I am pretty fit though gave up running last year due to fibroids.

    When the big one reached 8 cms, my gynae gave me 2 choices: a myomectomy which would most probably result in a hysterectomy or, popping pills for years to cause premature menopause. As we all know by now, pre menopause, the hormones estrogen and progesterone cause these fokkers to happen in 1 out of 3 women. My gynae thought dumbing it down for me by saying periods cause fibroids would make me happy. Grrrr. Don't let docs dumb things down for you! Male patriarchy working!

    When I heard the choices, obviously taking pills for years plus becoming menopausal unnaturally and way before my time was not a good choice. But having a hysterectomy didn't sound great either. My gran, aunt and mum had all had hysterectomies- my gran died and for the other 2, the recovery was long and arduous. So I put my thinking cap on and starting researching alternatives. And oh man, are there alternatives! I hit upon 2 which looked suitable but had to discard Ultrasound ablation as my fibroid was more than the max. size for this which is 7cms. So I read papers on UAE and went back to my gynae thinking the medical centre where she sits would do them. How wrong was I- she herself had very little knowledge of these - this technique is practised only by specialist radiologists and I was pretty much left on my own! So I trawled the internet for centres or docs doing these, sent emails, made calls with very little success. I had gynaes calling back saying they knew what was best for me and it was a hysterectomy- why not get it done if I had already had kids and not planning more?- many centres didn't know what a UAE was. It really was outrageous and maddening. I finally found a doc who did this procedure but privately and it was expensive but seems he was a decent guy and got me on the list of a public hospital 30kms away from BCN which routinely practise this and are, as I later found, specialists in this technique. I had a quick consultation with the gynaes there who head the department with specialist radiologists in the unit. I had a rather rapid consultation with the specialist radiologist too. Then COVID hit and have had to wait almost a year....

    As it turns out, they all didn't inform me well- bear in mind I thought I was pretty well informed as read papers etc but oh man!

    1. No one told me it would be 2 hrs of prep on the day- this involves blood tests and infusing you with antibiotics and pain meds.
    2. You need a pee catheter
    3. Then the worst, not told the intervention would take 4 hrs! Time d'snt matter if you are prepared! The team was nice and talked to me as I started freaking out a bit and requested them to talk to me. But it is horrible to lie there awake for so long and have stuff being done to you left right and centre. There would be pulling on one side then the bloody pressure sleeve on the leg would start every x minute then the radiology machine would do some weird thing and heat up your butt. Oh man.
    4. I wasn't told they would anaesthetize the nerves on my belly and lo and behold, suddenly have to hold my breath as an injection goes down in the area below the belly button and doc seems to be moving it around to get as many nerves as possible!

      I had no pain during the procedure and they said it was amazing but bear with me- was writhing for 2.5 hrs after. And then after every 3-4 hrs. I don't understand how this can be an outpatient thing because believe me, 2 days hospital care IS needed

    5. 2 days of pain and then you're good? LOL!!!! URBAN MYTH! I am on Day 5 and the pain is under control so now taking pain meds: Paracetamol and Enantyum every 7-8 hrs but abdomen is tender, am walking like a hunched up old lady and returning to work after a week is not looking realistic. Tried sitting upright on a chair for 2 hrs and it gave me tummy ache.
    6. Be prepared for fever at some point. Day 3 am back home and burning up so took a paracetamol and went to bed. No fever since but you can feel miserable and scared- is this an infection?
    7. Make sure you have someone caring for you for at least a week afterwards.
    8. Take your pain meds regularly and then try stretching them out to wean yourself off them as your body heals.

      Best bit is on Day 2 after the procedure, I get my period! Talk about timing! Are the stabbing pains from the period or the dying fokkers? Happily though, didn't get usual Day 1 Pig Massacre type of bleed. And it lasted 2 days instead of 4 .

      I am now looking forward to being able to run, lie on my back in bed, not have massive bleed periods, be more experimental in the sack as certain positions are impossible since 2 yrs, lose the swollen belly, lose the 2 kilos I have strangely put on in the past 6 months......I will let you all know how things turn out. WATCH THIS SPACE!

  • angelj
    angelj nora71815

    Posted

    Hi, I am so glad that I found this support group. I am 48. Have 1 fibroid measuring 7cm diameter and few clusters. I was having very heavy periods every 28-33 days. I had my UFE 5 days ago. The initial 4 hrs was unbearable pain, but they administered pain medication through iv, had catheterization for urine. I was sent home the following day. I am advised to take Motrin 600g every 8 hours for 10 days, and the pain is managed with that. i have Tylenol with codeine also, but didn't need it. But yesterday it started bleeding, passing clots and heavy cramps. Cramps is bearable since I'm already taking Mortin. Is it normal? it's been only 18 days since my previous cycle. Is it a period or am I passing a dying fibroid tissues? I reached out to the interventional radiologist who performed the procedure. He prescribed tranexaminic acid. I'm still debating whether to take it or not. Anybody has similar experience?

    • cl70
      cl70 angelj

      Posted

      hi! hope you are doing better. I too passed both tissue and small clots during my 1st menstrual cycle after UFE. I spoke with my dr and was told it was normal as long as they weren't large clots. I just finished my 2nd cycle and very little small clots, no tissue this time. Everyone's system reacts differently to different medicines. Unfortunately, I was prescribed Tranexamic acid prior to the UFE because of my heavy bleeding and it caused me to have a Pulmonary Embolism in which I am now taking blood thinners. Hopefully, you're experience is better than mine. Wishing you a wonderful recovery journey.

  • joshuapryce1987
    joshuapryce1987 nora71815

    Posted

    I do not believe fibre causes discomfort. Its never been the case for myself, and i have never met someone where that is the case. Fibre is god for the system, when we take organic versions are supplements, and natural remedies.

  • micibombom
    micibombom nora71815

    Edited

    I had a UFE in July of 2021.The doctor who performed the procedure stated that I should see results within 6 months. Well, it's been 8 months and I am still having heavy cycles. I also had break through bleeding that's when the fibroids act up and you find yourself having a very long cycle. I also called his office and he told me that he would get me an appointment to come to the office. I called my gynecologist and her office said it was the doctors whom did my fibroids responsibility to provide something to stop the bleeding. I had to email him and tell him that and he finally prescribe something. He also said his office would make an appointment for my MRI. 3 weeks past and no call for the appointment so I reached out. The representative at his office told me that they had no knowledge of me getting an MRI. I decided at that moment I am going to look for another doctor. LOL. I found this doctor in my area also look him up in google scholar and he actually publish an article on fibroids and perform over 500 UFE procedures since 1998. I am saying this because ladies look into your doctor before trusting him or her. I visit my new doctor today and he stated that since I had my procedure through my arm that there was a possibility that he missed a fibroid when doing the procedure and that is exactly what the original doctor told me when I called him that he may have miss one, 😦 I've learned a valuable lesson! Always check your doctors credentials. Now I have to get an MRI again and go through the procedure again! Ugh

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