Post Fibroid Embolisation

Women's health
1

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!

2

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.   

3

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

4

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

5

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.

6

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

7

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!!!!

8

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.

9

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... ;-)

 

10

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.

 

11

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

12

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.

13

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

14

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.

15

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.

16

Thanks for this thread!  Just had my UAE on Monday, it's Friday now. I know you smart ladies are weighing your options, and while this is a good one, please know that the recovery is brutal. Those are not period cramps, those are like labor pains-- for days on end. Don't be a martyr and cut back on your opiates, you will need them and thankfully they are there or this would be sheer hell.  Advice: 1) start your stool softener the day before the procedure and make sure you continue as long as you are taking pain meds. The constipation is severe and that pain competing with embolization pain is severe. 2). Wipe your calendar clean for 2 weeks, don't plan on doing anyhing except resting and mild movement around the house or yard.  I'm sleeping like 18 hours a day, I guess the meds make you sleepy.  3) have a little notebook where you record when an d how much meds  you take so you can keep your schedule. 4) have mild foods on hand already prepared like some good chicken noodle soup, bland rice dishes, oatmeal (was perfect) 5) have pantiliners, enemas, stool softeners ready. 6) make sure you have a thermometer..  Temps above 101 warrant a call to your doctor. 7) The pain comes in waves. When the cramping comes on I I use a hot water bottle and make sure my pain med is on schedule. 8). I did get intense nausea, but Zofran tablets helped that 

Hopefully you will have good nurses like I did. Rally some of your friends to text you or stop in. It is a major procedure. I'm only day 4 of my recovery and I think a hysterectomy would have been less painful-but with longer recovery. Maybe in a month I'll be glad I still have all my lady parts but right now I'm not sure this pain was worth it.  Btw my fibroid was 9 cm and I am 51 years old. So close to menopause I was tempted to wait it out!. If your symptoms are not that bad, you should consider waiting until menopause when they can shrink naturally. Unfortunately my fibroid and bleeding were too symptomatic.  If yours are not symptomatic don't be swayed to have an invasive procedure. (My grandmother had a grapefruit sized asymptomatic fibroid and did nothing). Good luck ladies, I know it's a tough decision!!  And when you are back to health appreciate it!!  Health is wealth. 

17

I had my UFE done about 3 weeks ago. I stayed home for one week and went back to work the following week. My experience wasn't that bad. I was given something to make me comfortable during the procedure and it worked. I didn't feel a thing. I vaguely remember what happened. I was medicated around the clock during my overnight stay. I was extremely tired and had no energy for two weeks. Despite that my recovery wasn't to bad. I stayed medicated with hydrocodone and naproxen. I also had to take some medication for nausea since pain meds make me sick. To help with the discomfort in my pelvic area I used a heating pad. I would suggest staying medicated after the procedure. Before the procedure make sure you discuss pain management. I had a good group of nurses who listened to my concerns and kept me well informed. Good luck to those who will be undergoing that procedure. For those that had a bad experience - everybody's tolerance level is different and I hope those who are in pain get better soon. Take care.

18

I had my procedure on 23nov2015 .Third week of recovery. just started little rids of driving and some walking but still feel tired . sometimes dizziness.

In the procedure everything happened same like Dr explained. There was no pain during procedure(lasts 1hour 45min)  then straigh after procedure pain started stayes whole day went upto 8-9(if pain on scale 0-10). I used morffine pump but dont know wether it was helping me or not.They already packed me day before with lots of painkiller. i was sick during pains and nurse gave antisick medicin and it went completly wrong.may be not for me. got breathing problem and i was paniked they need to put me on oxygen to settle me down.second day evening got discharge. Like Dr said about dischage ,pain or bleeding nothing happening to me after procedure. only few spots on second day.but little leak from bladder i think thats it.everyday need to use liners .  Its third week now and tiredness is still there ,not very active like i was before . hope back to work next week . As my job in special school need to be 100% fit physically to run around in school. waiting for first period and hope will not as horrible ,flooded as it used be.

19

Hi All,

I've been on this forum in a couple places, so have spoken to a couple of you, but I thought I'd give you all an update on my experience.  I had my UFE 6 days ago, and I really didn't think it was that bad.  I knew going in I would be moderately sedated, which was fine by me. General anasthesia scares the hell out of me.   I wasn't really awake through it at all, I just kind of remember hearing the doctors speaking, and thinking, "ok, here we go", and then what seemed like 10 minutes later, I could hear them closing the incision. I asked them how long it took, and they said 2 hours!  My fibroids are pretty big, so they had to inject a lot of the micro particles.   i was in post op for about half an hour then was taken to my room.  The pain was constant from the moment I got out of surgery around noon, till about 11 that night, but it wasn't debilitating.  Then suddenly around 11pm, the pain just stopped, and i only had to hit the pump twice the rest of the night.   

I was released early the next morning, still in very little pain, but a little out of it.   The next 2 days I felt pretty good.  Pain was being managed only by ibuprofen (they gave me oxycodone, which scares the hell out of me too, so i didn't even fill the script), and I slept for like 12 hours.  But this was a sense of false sense of security, because the worst of the pain finally hit me on Days 3 and 4.  So painful that it hurt to walk, or roll over in bed.  I tried to walk my dog but every step hurt, and i was so exhausted I needed to rest on a park bench.  Then by midday on Day 5, yesterday, it subsided considerably, however I was exhausted.  Today, Day 6, I'm finally feeling like myself.  I have much more energy, pain is minimal at best. Took the dog for a 45 minute walk, went to the grocery store, and will be making myself a nice swordfish dinner.  I feel a little tired, and my groin is occasionally pinging me, but otherwise, I feel the best I've felt all week.  Still not gonna push it, though.  

20

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