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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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  • michal
    michal nora71815

    Posted

    Having gone through embolisation a couple of weeks ago myself, I totally agree with you on pain management. Fortunately, my consultant radiologist fully briefed me so at least I was somewhat mentally prepared.  (But it was more like labour, not just "bad cramp"!) I was also on Morphine pump from procedure and overnight but gave it up in the morning as I was getting too nauseous. I also didn't tolerate voltarol so good ol' paracetamol+ibuprofen combo for me.  Fortunately not too much cramping after day 3, pretty much back to normal life after 7-10days though definitely more tired.  I also agree the importance of high-fibre diet, morphine had funny trick on my bowls so i was constipated and bloated for several days. In retrospect i should have asked for a mild laxative as soon as procedure was done.

    Hope you get rest and be on the mend.   

    • nora71815
      nora71815 michal

      Posted

      Hi Michal

      Thank you for sharing your experience. I'm now on my 5th week since I had my embolisation and started my period. Prior to this I  experienced one day of  migraine. The bleeding is very heavy and lots of clots as expected from the procedure. I am not sure how long this will lasts but I'm feeling so tired, light headed and generally less energy.

      I returned to work after 4 weeks off but  I wished I hadn't . It's so uncomfortable and embarrassing going to the toilet too often due to heavy bleeding.

       UFE is less invasive then myomectomy but the fact that both resulting to removal of the fibroid obviously in different ways should have the same recovery period.

      I was only offsick for 4 weeks but it was only the first stage of the UFE.

      I know that I could go back to my GP & get certification but  I have already declared returned to work fitness although I'm not. 

      If I get another sickness episode this will have an impact with my work sickness policy. It's such a shame that UFE guide for recovery is not well established yet.

      And that after the procedure you are basically left to deal things on your own.

      I think patient care post procedure needs more evidence. Hope you recover too as well and no more pain

      Regards

      Nora

    • christy68146
      christy68146 michal

      Posted

      They gave me Percocet for my pain which made me nausea and no appetite
  • diane57910
    diane57910 nora71815

    Posted

    Hi glad I found this discussion . I'm 14 days pre op. I never expected the procedure to be so painful after . I never felt anything for about half hour then I experienced severe cramping which didn't go away despite having a morphine drip I ate some food in the evening and it came back up that was the last thing I ate for 6 days the 6 days were spent in bed in pain sleeping sweating and taking codeine . On day 6 I ate some food came off the meds day 7 was up and about and eating oh and finally had a poo .day 8 I felt great day 9 I went for a 40 minute run and ran day 10 and 11 too . Today is day 14 I have ran but I'm still having hot sweats light headness , my groin is still numb and still have bruising my tummy also feels bruised . My fibroids were massive my tummy does look smaller and I'm 8 pound lighter. Sorry for my punctuation xxx
    • vivienne34555
      vivienne34555 diane57910

      Posted

      Thank you for sharing your experiences.  I can relate to 98%. Now can't wait to get back in th egym which I will be doing in another 5 days.

  • ellie50718
    ellie50718 nora71815

    Posted

    I hope people are still following this thread. I had my UAE Tuesday morning. I also had been well briefed on what to expect and was worried about how I would handle the pain post op. Quite rightly too! I was also on a morphine drip which must have had some effect but Iwas still in a lot of pain. On Wednesday am I was given my discharge papers although I still had a catheter, could not keep down any food or water and was in incredible pain . . . as you say more like labour pain. I did get steadily better by the evening and ate a little. I was nervous about going home in pain and my first night at home was terrible, I think I would have been better with another night in hospital - they don't ask you to leave but make it plain they would like you to! Last night I slept about 5 hours so improving. I feel positive though still in pain and I'm glad the procedure is over, however I would like to hear how things went for others in these initial weeks.
  • Luckymum
    Luckymum nora71815

    Edited

    I was offered this option but I didn't think it was for me, after reading your post I'm glad I didn't; your recovery sounds at least as bad as my TAH :o Hope you feel better soon xxx
    • Luckymum
      Luckymum

      Posted

      Oh my life just realised you are all talking about staying in hospital too, I was told this procedure would be carried out as an OUTPATIENT!!!!
    • patricia27802
      patricia27802 Luckymum

      Edited

      Hi Lucky had to comment on this I had a UFE done 7 months ago and o can tell you it's not as bad as a TAH post op. My friend had a TAH more than a year ago and is still suffering now from the complications now. Where I have had no complications. Just wanted that out there to put the record straight. Not everyone has the same experience.

  • mary67830
    mary67830 nora71815

    Posted

    hi guys, i read all your comments about embolization and i am scared to do it coz i have sched this coming monday already and thinking to cancel it. i am thinking for an option for me like using epidural or undergo hysterectomy so i will get lesser pain, is removing uterus more comfortable than embolization? i am not sure anymore which procedure i will do but one thing im sure of that i dont want to experience severe pain or labor pain coz i know it is very painful indeed! my doctor say that i can also use cerazette pills up to my 55 years of age and by that time, i am already menopause and my myoma will shrink itself. but another problem are the side effects of long time use of pills that can cause thrombosis, heart problems and breast cancer. I dont see any much option for me here now, all of them have negative effects. i am just wondering why here in holland they dont use epidural to control the post pain, if they know that 99 % of women have severe pain, why they dont use a more safer and effective medicines in controlling post pain after embolization? the doctors is n actually thinking about their patients and their comforts coz if they do, they will not let these women suffers after embolization? i think i need to think if i will cancel or go on with my procedure this monday but my husband just want me to do coz he is not the one who will suffer but me....i am using cerazette pils right now and i dont bleed and have no painbut my myoma is 7 cm and maybe can continue to 5 more years than i will have my menopause and eventually my myoma will shrink. god help me.....thank you guys.P.S. any suggestion or comments are welcome.
    • michal
      michal mary67830

      Posted

      Well if it's a choice between UAE vs hysterectomy, I would def choose UAE. Dunno how painful hysterectomy is, but my understanding is that the recovery time is waaay much longer. A close friend is scheduled to have one and i think she was told she won't be able to drive for like 2-3months till the wound heals.  Despite what I wrote about pain, it was only the first 2-3 days that were tough in my case, and it was also a matter of finding what med works and what doesn't. Morphine is generally more effective but not for everyone, the same as other prescription only pain killers. It's been 6 months, I no longer have heavy bleeding and flooding, though my tummy isn't as flat as I had originally hoped for... ;-)

       

  • Pumpkin1975
    Pumpkin1975 nora71815

    Posted

    I don't know if anyone is still following this but I am so glad I found this discussion and know I am not alone! I had embolisation three weeks ago and it was a horrible experience. Firstly I was repeated told that I would be sedated for the procedure until I was actually on the table and the was told they did not do sedation for this because they had no anaesthetist and I need to be aware enough to operate my own morphine pump! I became pretty hysterical as I was so scared and almost called it off. I cried all the way though. Afterwards my breathing apparently slowed so much I had to be taken off the morphine and the pain and distress for the next few days was intense. I've had two children and this was worse and longer than labour. I was constantly vomiting until I was bringing up black stuff and the anti nausea medication they gave me didn't work. I had to stay in hospital for three nights by which time I could tell the nurses were getting really fed up with me. They were constantly telling me to eat and get up and walk around when I couldn't even keep water down. Worse of all, somehow I managed to get a nasty infection down below which mean weeing was scream out loud agony. The nurses didn't want to know and no one examined me until I insisted just before being discharged. They gave me thrush cream when it obviously wasn't thrush,and I had to see my GP for antibiotics as soon as I got home. I am due to go back to work tomorrow but still feel so tired and my back and thighs really hurt still. The idea that this is an outpatient procedure is laughable. I don't want put people off if they need treatment but I feel doctors are really underplaying how serious this procedure is.

     

    • claudia47873
      claudia47873 Pumpkin1975

      Posted

      Hi I'm still following my procedure is tomorrow and is great to read all experiences. .. now I'm feeling more prepare thanks Girls
    • m51
      m51 claudia47873

      Posted

      I was discharged yesterday following this procedure on Wednesday, and an overnight stay in hospital. My experience has been good so far. I didn't have any pain during the procedure, and the pain after the procedure was managed with a morphine pump. I hope everything goes well for you too.
    • angel368
      angel368 m51

      Posted

      I am going for my procedure tomorrow morning. A little nervous but looking forward to recovering and getting back to a normal life. How are you feeling now? And how long will you be taking off work?

      Wishing you a speedy recovery

    • m51
      m51 angel368

      Posted

      I wish you all the very best, and that everything goes well for you. I was really nervous before the procedure but thankfully the sedation worked wonders for me, and don't remember anything about it. I am taking it easy now and managing the pain with ibuprofen and paracetamol. I will be taking two weeks off from work. I am hoping to be back by the middle of next week.
    • angel368
      angel368 m51

      Posted

      I am glad to hear you are recovering well.

      I got home a few hours ago, discharged with paracetamol with codeine, naproxen and tramadol.

      The procedure as you said was pain free, I had a local anesthetic so was alert. The actual pain started about 15min after the procedure and continued in intensity for about 20 hours.

      When I relax I feel fine, movement reminds me how tender I really am. So as you said, taking it easy is key.

      I hope you see the desired effects over the next few months. Keep me updated and take care of yourself.

    • patricia27802
      patricia27802 m51

      Posted

      Hi I am 14 weeks post op and definitely could not yet go back to work. I can't walk very far which doc has said should pass in a week. While I was there he tested my Urine and said I had an infection. All I wanted to say was don't rush back until you feel 100% cos this literally knocks you for six.

      Wishing you a speedy recovery

    • jenmac18
      jenmac18 patricia27802

      Posted

      Totally agree about not pushing it.  My doc told me there would be days I was going to feel really good, but don't be fooled and think you're completely recovered, or you'll relapse and your recovery will last that much longer.....
    • ruth82598
      ruth82598 Pumpkin1975

      Posted

      i think its different experience for different people. like my Doctor said, we all have different anatomies and so will the experiences. first day of my procedure was painless i was dicharged from the hospital the next day. the pains came the second night and boy! hell was let loose! i could not sleep just laid down in pains and rolling from side to side, but i was given some pain killers and then i was better the next day. by the day 4. pain was gone just some little tenderness around my abdomen. but i felt good that week and went shopping. had my procedure on the 4th/ 5/16. my first 2 periods have been heavy and i get severe headaches. am still on my iron tabs though, as adviced by my Radiologist. thank God for this forum. i now know i have to be patient and wait for less flow even as the healing continues. am back to work after 4 weeks. i get to use pantiliners because of discharge. my Myoma were very large and plenty so that might be responsible for the yet heavy bleeding which i have been told will subside as the months roll by. i also notice my stomach nolonger blots and enlarge like it used to before my period. that on its own is progress. i will also try the apple cidal and see if it reduces the heavy flow. whoever is having issues for now i advise should be a little patient with the healing process. fibroids is just a blood sucking demon. but thank God for UAE / UFE it can be defeated. hang in there girls!
    • vivienne34555
      vivienne34555 Pumpkin1975

      Posted

      Hi I am so sorry to hear of your experience, seriously you need to make a complaint. There is still time. Contacts PALS dept urgently. Please make a complaint becuase if you don't the service won't improve for you or other women. They never sedate a patient going through this procedure. All this shoukd have been explained pre-op plus you should have received leaflets with lots of information. The Doctor should have examined you during your time in hospital. My experience was excellent.

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