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UFE (Uterine Fibroid Embolization)
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07-15-2015, 03:17 PM
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HysterSister
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Posts: 7
Hysterectomy: August 27th, 2015
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UFE (Uterine Fibroid Embolization)
Has anyone done it? What was your experience? I am 41, small 4-5 cm fibroid which has grown into the lining of the uterus and is causing the lining to thicken significantly. Last week I required a blood transfusion due to blood loss and doctor recommends hysterectomy. I have done research on UFE, but it was never suggested to me by Gyn. :-/ So, I'm interested in hearing other peoples experiences, while I track down a local Dr that does UFE to consult with.
Thanks in advance!
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07-15-2015, 03:54 PM
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HysterSister
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Posts: 4
Hysterectomy: July 20th, 2015
Surgery Type: TAH
Ovaries: Undecided
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Re: UFE (Uterine Fibroid Embolization)
Hi as well,
I had 2 UFEs done in August and November of 2012 for large fibroids outside of uterus that were causing severe pain and discomfort. At the time I was 40 and 41, respectively. We tried the UFE because we didn't want to just have the hysterectomy without trying something less invasive first.
I started feeling better after January of 2013 and have been mostly pain free (except during periods) up until this past February when the pain started increasing and becoming constant again (apparently after the UFE, the fibroids shrunk but have begun growing again). I am scheduled for a TAH on Monday (can't live another 10 years with the pain).
You'll need to find an interventional radiologist for the UFE (mine was the chief radiologist at my local hospital).
I've read stories where people have had this done and it has helped them for the better, but this is just my story.
Good Luck and I hope this answers some of your questions.
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07-15-2015, 06:50 PM
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HysterSister
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Posts: 5
Hysterectomy: July 17th, 2015
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: UFE (Uterine Fibroid Embolization)
I had an embolization on March 1, 2012. At the time of the procedure my fibroid was 6 cm and I had been bleeding daily for 2+ years. The bleeding immediately stopped and I didn't bleed again till 2014. However, when the bleeding started again in 2014 it hasn't stopped. Not for one day. Tests showed that the fibroid had grown from 6 cm to 10.9 cm. I am having a hysterectomy this Friday. I sure wish it would have worked. But I can't continue living with this bleeding. Had I known then what I know now I would have had a hysterectomy in 2012 instead.
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07-15-2015, 09:54 PM
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HysterSister
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UFE (Uterine Fibroid Embolization)
Look up past posts by Backhome and SisterDuke. They both had very positive outcomes.
I had a UFE back in March and for me it was no big deal. The procedure was very easy and recovery was quick. I won't know what shrinkage if any I have until October when they do the next MRI. I have lost ~12 pounds since the procedure so I hope that is a good sign. Like any procedure there are good outcomes and negative outcomes.
I did my own research on different treatments for fibroids. I got multiple opinions until I felt I knew what I wanted. I spent hours on the NHI website reading medical articles about hysterectomies, myomectomies, and UFE. I came to the conclusion that hysterectomies are like playing roulette. Some people win big (no complications short or long term), some have minor complications immediately after surgery but go on to live happily ever after, some have major complications short term, some have long term minor or major complications, and a few people die. There is also a lot still unknown about how hysterectomies affect our bodies. Doctors like to think they know everything about the human body but then again that use to think the appendix didn't do anything that it was left over. But now they know better - it does have a purpose it grows good bacteria.
No matter how good or experienced your doctor is they can't tell you how your body is going to handle the procedure. To me after all my research I wanted to explored other options before taking the leap to have a hysterectomy. If the UFE doesn't work for me I will go for a myomectomy next.
Good luck in your decision.
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07-16-2015, 09:34 AM
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HysterSister
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Posts: 1,010
Hysterectomy:
Ovaries: Kept 1 or both
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Re: UFE (Uterine Fibroid Embolization)
Yes, I had excellent results and would highly recommend it. My suggestion is to find the most experienced Interventional Radiologist (IR) possible. I believe my success is a result of the diligence of my IR. I had multiple blood vessels supplying my fibroid and if one of these was missed my fibroid would have continued to grow. You can Google to find an IR search tool. My fibroid shrunk 90% over 18 months and it was twice the size of yours. Good luck!!
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07-20-2015, 06:23 PM
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HysterSister
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Posts: 609
Hysterectomy:
Ovaries: Kept 1 or both
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Re: UFE (Uterine Fibroid Embolization)
At age 40, I had UAE/UFE in 2010 for several large fibroids causing super heavy bleeding and anemia. Easy procedure, fast recovery, good results ... for a while.
About a year later, I stared having heavy periods again and either new fibroids grew or old ones re-generated (not sure).
In 2013 at age 43, I had a Da Vinci myomectomy to remove several large fibroids making me look about 6 months pregnant and causing lots of heavy bleeding, anemia, bladder/bowel pressure. Easy procedure, not a bad recovery (for me ~6 weeks working from home most of that). Great result ... for a while.
I had Mirena IUD from 6 months after myomectomy until 2 months ago when I had it removed to prepare for a second UAE. Yes, indeed, the wicked fibroids are back. Ranging in size from 8 cm to 7 cm to 4 cm, plus innumerable small ones (all intramural / transmural).
I had the second UAE on July 7 at age 45. IR said it looked like I had never had a UAE back in 2010, as all of my arteries had fully regrown. The body has an amazing way of regenerating itself!
The repeat UAE went well. I developed a small hematoma under the puncture site (maybe golf ball size) but it disappeared within a week, so really no bad effects at all. I went back to work 5 days after.
In talking with my gyn during the follow up appointment, she said she has had a few patients that she referred for UAE over the years that ended up needing further intervention. I'm the only one who opted for a repeat UAE, everyone else just moved onto hysterectomy.
I'll keep you all posted on how it goes after 6 months / 1 year / God willing forever! I do not regret trying UFE again. The risk is extremely low compared to hyst or myo and the recovery is fast.
Good luck!!!
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07-20-2015, 06:35 PM
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HysterSister
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Re: UFE (Uterine Fibroid Embolization)
I've had wonderful sucess with UFE.
And like Playacalor, I would do a repeat UFE before submitting to a hysterectomy.
There are far too many possible negative outcomes with a hysterectomy. But two years after my UFE I have no issues at all.
Hope that helps in some way. Fibroids are awful and it's so hard to know what to do.
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07-23-2015, 01:51 AM
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HysterSister
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Re: UFE (Uterine Fibroid Embolization)
Before considering treatment for fibroids, it is important to take into consideration your own, individual conditions and circumstances. The standard treatment for uterine fibroids today is Hysterectomy. But other, less invasive treatments may be relevant for you. For example the Magnetic resonance guided focused ultrasound (MRgFUS). You can look for treatment centers here: www(dot)uterine-fibroids(dot)org/US_Centers(dot)html and schedule a consultation meeting to see if you are a candidate for this type of treatment. I say, it’s worth exploring all options before opting in for a hysterectomy.
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07-23-2015, 01:44 PM
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HysterSister
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Posts: 609
Hysterectomy:
Ovaries: Kept 1 or both
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Re: UFE (Uterine Fibroid Embolization)
I also looked into MRgFUS recently. Apparently I am not a candidate because the patient must have a scar-free abdomen in order to avoid getting seriously burned by the treatment. I have a few scars from the DaVinci myomectomy I had a couple of years ago.
If there are scars on the abdomen it can interfere with the beam transmission. Only a consult can tell if the location of the scars will interfere with the beam.
I am just going to see if my second UAE/UFE worked. I figure if starving the fibroids of blood doesn't work, probably nothing else will. The trouble with all of the non-hyst treatments is that they ALL provide the opportunity for new fibroids to develop and grow because you retain your uterus. Unfortunately, none of us has a crystal ball to see if our bodies will grow new fibroids or not. Many people have a less invasive treatment and never have a problematic fibroid again. Others are not so lucky. Personally, I would rather take the time to try less invasive first as there's no going back from hyst.
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07-23-2015, 01:49 PM
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HysterSister
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Posts: 1,010
Hysterectomy:
Ovaries: Kept 1 or both
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UFE (Uterine Fibroid Embolization)
Someone from another board was burned inside and out when focused ultrasound was tried. This may not be the norm but it seems to me in general focused ultrasound has been a great disappointment.
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