Heavy bleeding 7 months after UFE
Posted , 32 users are following.
Why??? UFE done September 2017 . Nov 17 ist period normal . second one Feb 2018 .also normal . but this one "holy molly" flash back from pte UFE , pelvic pail left side, bleeding to death it feels like and blood clots big ones, I thought I was in the clear until 4 days ago. I don't know why this is happening. I haven't gone in for my post MRI. My insurance sucks, so I was putting it off, also I was feeling great. Going to make appt tomorrow need to get more meds also, back to motrin 800 and some nor- cos . Sex life affected again 😕 ... Anyone else ???
1 like, 42 replies
kimjon maria1212
Posted
I am moving along toward you UFE right now. I am wondering did any of you get coils put in or did you just have the polyvinyl alcohol particles put in?
leanna59589 kimjon
Posted
hello there,
I'm new to this forum, I'm just seeking some advice, and I'm interested to hear any experiences or tips when it comes to UFE.
im being referred atm, but ive just been going through of these messages, the UFE! doesn't sound that hopeful..... I was hoping it was going to settle my heavy bleeding.
kimjon leanna59589
Posted
Hi,
If you’re still moving towards UFE, I say that it could be good experience or bad experience.
First thing you won’t be able to get up after the procedure for several hours because they’re going thru I believe an artery.
Second of all your body’s going to go through something when the tumors blocked-I was feverish and sweaty but I did not want to go back into the hospital because it was right during early Covid. I was fortunate my doctor did the research and worked with me. I took the pain meds and what not.
Mostly, I would warn you about asking what chemical they’re putting in your body to block for tumor and then re-search it. in my case, the website said polyvinyl alcohol, but they used something else and that material made my blood sugar go up. I did not use coils. I thank God I didn’t do that. Which ever way you go I hope it works for you.
God Bless,
kimjon
MiggyB maria1212
Edited
I am grateful to have found this forum. I am so upset that I even had this procedure done in October 2019. I am 48 years old and was trying to avoid a hysterectomy (I already had a multiple myomectomy about 10 years ago). This time, I had a few larger fibroids (one 12 cm) and several smaller ones, and was never told large-sized fibroids would be an issue to treat with UFE. I am 5 months post UFE and I am still having heavy periods (the first two were lighter and I had hope). Then, in December, I started having a foul smelling discharge, etc. It was not expected and I feel that I was really ill-informed about how this could go. I have been having to wear a sanitary product every day for the last 3 months because of the never ending discharge and bleeding. I also went anemic after heavy bleeding for 2 weeks in January, which has returned again this past month. I had my period for 8 days, then a week of just the lovely, chronic discharge. I got my period AGAIN a week ago and it's been very heavy the last few days. I am so discouraged. I had an MRI in January and they said the UFE was successful. There is something very wrong here if this is considered a success. I am so disappointed and literally don't know what to do at this point. Any advice/support would be greatly appreciated. Thank you 😃
kimjon MiggyB
Posted
What does that mean "it was successful"? Did they tell you what the size of your tumors are now, or if they are completely gone? They should show you before and after scans to prove it.
Also there are other treatments that they give for the uterus for bleeding besides UFE and you may need one of those.
Did they give you another diagnosis for the continued heavy bleeding? I would go back to my gynecologist and ask these questions and any more that you could think of because if the tumor is gone the bleeding should’ve stopped if that’s the only cause.
HTH
Kimjon
cocoamoney MiggyB
Edited
I don't think these drs know what to truly expect. I'm in the same boat. Right back to bleeding, Right back to anemia. I should have had the hysterectomy
Simran2018 MiggyB
Posted
Dear Miggy
I am sorry to hear this but exactly the same happened to me after UFE. I started passing large blood clots and became severely anemic despite having iron infusions. Turns out that in 5% of patients UFE is unsuccessful. Whilst the procedure went well, research indicates that this treatment is not suitable for large fibroids. My periods and symptoms, especially pain become much worse. I just wish that there was a better link between radiology and gynaecology as I had to wait 4 months to be seen. The Gynaecologist was extremely helpful and I had a myometomy done for my multiple fibroids which so far has given me respite and has helped immensely though I do realise that they can grow back.
I would perhaps suggest hormones although these didn't suit me and made my symptoms worse but everyone is different. I wish you the very best in your recovery.
Overall, women with larger fibroids of should not be recommended this treatment and better advised.
Roza20 MiggyB
Posted
hi Miggyb
I had my UFE feb 2020 and before the treatment they had to do mri scan to ensure that I'm eligible which they said that if fibroids are larger than 5cm and if they are sub mucosal then ufe is not suitable.for the size that you had, ufe wasn't the best option for you. I had to seek consultation from multiple hospitals private and nhs cause I wanted to hear views from different doctors but with my situation ufe was the only option as I already had 2 myomectomies in2013 and 2018 and they kept coming back. this was because prior to these surgeries they would give me prostap injections to shrink them first for 3 months and when I had surgery most disappeared and they removed the ones they saw and after surgery the ones that shrunk grows back once the drugs are off the system. crazy! just to be told by my recent gynae that I shouldn't have been given any drugs to shrink them, they should have been removed in their actual size from their roots so that they dont come back. I dont even know anymore who is telling the truth ..
jetwaterfitness Roza20
Posted
Similar situation. I was put on orlissa and my fibroid shrunk 1 cm, taken off and got the fibroid ablation known as sonata. One month later bleed heavy for 10 days with a 2 day reprieve than an exlposion of blood and clots. My IUD came out and I was put on transemic acid which stopped the clots but the bleeding kept coming, Had a cat scan which showed the fibroid had grown and the doctor said she was very concerned because "fibroids dont grow after an ablation" I asked ""what happens if you were given a drug to shrink them and then stopped the drug AND then you had the ablation" Response " I never did an ablation on anyone else who had used orlissa before." So she went the "fear factor" route of sayinng she was very concerned that my fibroid grew like it could be something scary. But my uterus and my endometrial lining all got bigger after the ablation. I also looked like I was 3 months pregnant and gained 10 lbs. Im a fitness trainer so none of this made sense. Still bleeding.. Back on orlissa. scheduled to see a surgeon about a hysterectomy in 3 weeks
cocoamoney maria1212
Edited
Had my UFE Feb 12 initial discharge from procedure lasted two weeks. 1st period was a week early and slightly heavy. Second period on time but heavy spotting for 5 days then Very heavy period for 6 days and counting. Cramps resemble the stabbing needle pain I had after the meds ran out from the procedure. In case you're wondering, they only give Black women 10 pills at a time even if you have no drug history. Anyway I was just thinking.. All THESE DRs saying you'll be back to normal after 2 weeks are lying.
kimjon maria1212
Posted
How big are your fibroids?
kimjon
stacey41919 maria1212
Edited
I had my UFE January 2020, for both fibroids and adenomyosis. I was bleeding heavy from Jan-end of March. Finally had a "normal" period in April. However, this month its extremely heavy, the clots are huge and the pain is unbearable. Im more upset that I wasted all of my sick days on a procedure that didnt work. I am 39, no children and at this point, they can take my uterus. I can not take this any longer.
Roza20 stacey41919
Edited
Hi Stacey41919
sorry to hear what you are going through. I had my UFE on end of feb 2020 and my period was due in 3 days after the treatment . I thought they would be disturbed but they weren't. had it as normal but not too heavy, march and april no cramps and light period no clots. in may I had cramps on the left hand side during my period with heavy periods but not as heavy as pre ufe. I called the radiologist and I requested afollow up, I did MRI scan and sat with him for explanation of pre and post surgery changes..it appears there was already 30% shrinkage . I asked why cramps and stabbing pains after ufe and he said that some fibroids were attached to the uterine lining so during shrinkage process and especially during the period when the uterine lining contracts that's when that pain comes. but I noticed 1 thing that the pain I used to have on front lower abdomen it kinda of moving down each month to the lower back as the uterus shrinks. my fibroids were all about 4cm intramural but were so many that I looked 22 weeks pregnant and I had bladder incontinence for 5yrs which is now gone. so I think as the fibroids shrinks the flow may vary from low to high every other month until it settles. see you doctor though to ensure that you are not developing new fibroids. I had 2 myomectomies prior to ufe but these fibroids kept coming back. all the best and dont give hope yet as its only 6 months and these monsters shrinks slowly as time goes by. I'm 47yrs no kids because of these fibroids but my main focus was my well being and I'm glad I did ufe cause I was anaemic for 8yrs due to heavy periods I had to take 2 days holiday every month to stay at home because of my periods were too heavy i couldn't be in public
curvywunder Roza20
Posted
Ladies, I was in a similar situation to yours as well prior my UFE 6 months ago. Actually due for my next follow up in 2 days. Had my first ultrasound follow up back in October to which my Radiologist reported that my uterine volume had shrunk by more than half.
So far my periods avg have been mostly light to medium (could wear regular tampons again and wore a menstrual cup for 6 and + hours on heaviest day to near full or less previous cycles). But I have noticed a slow increase on my heaviest day. This cycle has been the heaviest yet - bigger cup was more than half full after 6 hours on day 2. Not sure what this means but I'm uneasy. Had 2 hysteroscopic myomectomies to remove 2 and 4 cm submucosal fibroids before doing UFE. Both instances, heavy periods were back within 3 months so reason I took this path was to finally tackle the dozens of 1 to 6 cm intramural and subserosal fibroids I had, as well as suspected adenomyosis/endometrosis, and nip my resulting long standing anemia.
I hope you're right Roza, that it's just as these fibroids die, your flow fluctuates. I also hope things have improved for both you and Stacey since your procedures.
UFE_2022 Roza20
Posted
hi there,
new to the forum! I had my ufe end of nov 2022. im still waiting for my bladder symptoms to diminish. Can anyone please tell me typically how long this took? That was my primary complaint I went into retention and have had many bladder issues. had enough.
please give me hope. I heard symptoms easy up by 3months. thats in 3 weeks for me...and nothings changed in that department. I did have a very large fibroid 13 cm.
thanks so much!