UFE Made My Symptoms Worse. How?!
Posted , 3 users are following.
I was diagnosed with fibroids many years ago. They became symptomatic in 2017 and increasingly got worse. After unsuccessful attempts with various birth control pills to manage the symptoms I decided to seek surgical intervention. I had UFE in December of 2020 and my symptoms have become worse. I was aware that they could either improve or I could see no change, but I was not informed nor prepared to be worse off. The interventional radiologist refuses to intervene and provide any prescriptions to alleviate the bleeding despite saying that she might pre-procedure. At nearly 6 months post she continues to say wait until the 6 month MRI to see if it was successful. Umm…if my bleeding has been consistently worse since the procedure, I don't think it will miraculously change.
I visited my gyn and he ranted about how interventional radiologist are incompetent when it comes to fibroid treatment and that if I want to remain under his care I need to stop being under the care of the IR. Not sure why they can't work together until the 6 month mark. He wants to prescribe Oriahn, but says I can't go back to IR. I need to get the 6 month MRI to see what's going on.
Has anyone else experienced worsening symptoms post UFE? I was told things should improve by the 3 month mark, but here I am. Maybe UFE just isn't going to work for me. VERY frustrated, fed up, and upset.
1 like, 4 replies
Fran1977 doll52134
Posted
Hi there,
I have just joined and read your post. How are you feeling now?
I am the same, very frustrated and worried after ufe and passed back and forth between gyno and radiologist. 2 months after ufe and I'm still getting pain nearly every day since the procedure. A few weeks ago the pain got so severe i went to A&E and stayed in hospital for 3 days on antibiotic drip which did help but think rest in hospital also helped as once i was out and trying to resume my normal activities the pain started again. Now on day 7 of my first period since ufe and its been heavy and very painful. Gyno has said my swabs and bloods are clear. Had ultrasound lsst week which shows it's barely shrunk less than 1cm. My fibroid is 10cm. I'm still off work. i can be fine all day and then the pain starts and that can last between 1-3 hours usually through the night. I take paracetamol and mefanetic acid plus hot water bottle for pain relief. Plus i sit still in the same position where its slightly less uncomfortable until it oasses. I can't offer any solution but i understand how you feel and just wish i could get some reassurance that things will get better.
doll52134 Fran1977
Posted
Hi Fran,
I decided to seek a resolution from my new gyn who started me on 2.5-5mg of norethindrone to control the bleeding. This cut my bleeding in half. Then a week ago my gyn performed a laparoscopic myomectomy. My large fibroid of 9.2cm had only shrunken to about 6.7cm. My doctor discovered what she thought was a polyp during my hysto ultra sound. During surgery it was actually discovered to be eroding tissue in my uterus due to my large fibroid causing damage as an effect of the UFE. I was shocked because I had followed the journey of a Youtuber who experienced the exact same thing and ended up getting an open myomectomy. UFE works for some, but can be detrimental to others. I hope it turns out to be beneficial to you. I am recovering from last weeks surgery and feeling pretty good. I am hopeful that things are starting to look better for me.
joshuapryce1987 doll52134
Posted
It means either you need more surgery or you are not doing something you should do.
doll52134 joshuapryce1987
Posted
In my last comment/update, I explained that my new gyn found that the large fibroid that UFE targeted had started to erode into my uterus. This was resolved by removing it surgically. One cannot control how the body will handle treatment or heal, thus it was not in my control. Not sure how you came to the conclusion that heavy bleeding could be a result of "you are not doing something you should do" as that makes no sense. Medical research has shown that submucosal fibroids can erode into the uterus and/or result in fibroid expulsion after UFE.