Interested in others UFE experiences

I have a 5cm fibroid that has been causing heavy bleeding, blood clots, and anemia.I have an appointmentment in August to talk to a doctor about Uterine Fibroid Embolization.
would really be interested in hearing from people who have had the procedure and what their experiences have been. According to my ob/gyn the only other best treatment is a hysterectomy.

Dear weaverlady:

Here is a link to the fibroids section of our Resources Directory: http://www.hystersisters.com/vb2/lin...=browse&cid=26 and you can also find good info at www.thefibroidplace.com

I hope you are able to find the right answers soon. I am sending huge cyberhugs

Hi Weaverlady,
Here are some links to previous discussions about UFE from our Options and Alternatives Success Stories (sub-forum at the top of this page):

http://www.hystersisters.com/vb2/sho...d.php?t=197498

http://www.hystersisters.com/vb2/sho...d.php?t=175821

http://www.hystersisters.com/vb2/sho...d.php?t=174324

http://www.hystersisters.com/vb2/sho...d.php?t=155942

Here's the link to the Yahoo EMBO discussion group mentioned in one of the above threads: :http://health.groups.yahoo.com/group/embo/

Good luck with your decisions. Let us know how your Dr. visit goes, okay?

Best wishes & s,
Beth

Hi,
did u have your procedure yet? i am scheduled to have a UFE on Tues. 7/12. I am very close to backing out of it. i am very scared and have read some horrifying articles about the possible complications. What has your experience been like? thank you so much for your help.
Carolyn

Hi,
I really understand how nervous you feel. I haven't had my procedure yet (couldn't get an appointment with interventional radiologist before August 24), but sometimes just thinking about it makes me so anxious that I go on a chocolate binge. Last year my sister had a fibroid that grew from 6cm to 9cm in one year and caused her a lot of problems. She finally had a hysterectomy. It helps me find more courage to think about doing something to remember her situation.
I am not sure it's possible to completely conquer fear, but I also think you shouldn't force yourself to do anything until you feel ready.
Please let me know what you decide. Good luck.
weaverlady

hi weaverlady. i subscribed to this site a couple of months ago when i found out that i had four fibroids vs. one. my gyn said that hysterectomy or myomectomy was the best avenue for me. since that was my mom's only choice 30 years ago, i figured there had to be something better. i had UFE last friday. i'm home this week resting and healing. i feel great. the procedure went really well. i called a friend of mine who's the top radiologist at UNC Chapel Hill. he recommended a colleague that's suppose to be the best in the business. luckily that colleague is in marietta, georgia (15 mies from me). he has a center for uterine fibroids. had taken an entire wing of a hospital to perform UFE.

honestly, my gyn, along with all of the horrible articles i read online, had me scared to death to do the procedure but after taking the time to speak with my radiology friends, i decided to go for it.

i'm healthy, in good shape, don't smoke etc. so the risks of clotting etc. were minimal. best thing to do is find a great radiologist and sit down and talk to her/him. your gut will tell you what to do.

as for me, i'm glad that I did it.

good luck. and, if you have any questions, give a shout.

peace.

Hi weaverlady,

I had a UFE last fall for a fibroid that was causing bleeding and severe anemia. My gyn recommended the procedure, and I was very impressed with the interventional radiologist who practices at a university hospital in my area.

The fibroid responded very well to the UFE, and even though I ended up with a hysterectomy in the spring due to an ovarian cyst, I am very glad I went through the UFE.
My surgeon said I had very little blood loss during the hysterectomy because of it.

Some things to think about:

A UFE is a major procedure. Over half the women who have it experience severe pain the first 12 hours after the procedure. I was one of them. The pain was treated very effectively with Toradol, but if I had to have this procedure again, I would ask for an epidural.

About 12 hours after the procedure, I felt a bit weak but pretty good. I understand that this is also pretty common. The body adjusts around the 12 hour mark, and the pain tapers to plain old discomfort. It is common to have a low grade fever for a while and want to rest.

I went back to work at about 1 1/2 weeks, and it took several weeks to feel like myself.

I found that my bladder was a bit irritable, but this went away quickly.

I asked the radiologist tons of questions--everything from whether he was going to embolize the ovarian blood supply to risks about sexual problems later on (had no problem with either). He welcomed all of my questions and said that they typically find that UFE patients have done their research and are more informed than many gyn's.I would ask how many UFE's the radiologist has done--it is important.

I hope some of this helps--good luck!

I had a UAE 4 years ago.
My results were mixed. All in all I'm glad I had it, although my reasoning is partially emotional rather than medical. I ended up having a hysterectomy 4 years later, but felt satisfied that I had already tried the UAE.

Here's how it happened. I struggled with fibroids (pain and bleeding) for years. Birth control pills didn't help. It got to the point that I sometimes went through a tampon and super maxi in 15 minutes, and I HAD to do something.
I had the UAE. The procedure itself was actually fascinating. I was awake and watching it. The interventional radiologist was good at explaining, and I felt in good hands. Towards the very end of the procedure the cramping started, really really bad. They put me on morphine (as planned) but it was still pretty bad.
I stayed overnight in the hospital (also as planned) on the kind of morphine drip that you control yourself -- this worked great. It is programmed so you cannot overdose, and the maximum it will deliver is a little dose every 15 minutes. But it is great to not have to ring the buzzer and wait for pain relief. Also what is weird is that this was called an outpatient procedure. The trick is that I was released in 23 hours which is less than a day.
I had a harder recovery than average, but it was not a nightmare. I was in pain, and feverish and weak. That lasted about a week. I took a week off of work, and then worked from home a couple of days, before dealing with the long commute.
The month after the UAE my symptoms were worse than they had ever been. The doctor explained that this was because of the disintegrating tumors. I kept calling up and saying that I was bleeding heavily, but they didn't really listen to what I was saying, and they kept responding by reminding me that it could take 6 months to see an improvement. I finally realized that I had to quantify the bleeding, and told them I had gone through 92 super maxis. Then they offered me the choice of a transfusion, a hysterectomy, or toughing it out.
I chose to tough it out. The 2nd month my symptoms were similar to a period beforehand. The third month they were slightly better. By the 6th month the bleeding had improved by about 50%, and my largest tumor had shrunk from 12 centimeters to 9 centimeters.

All in all, I had a reduction in uterus size, I no longer had to get up at night to pee, I had ligher periods (although still heavier than 'normal'). I was pleased with the success.

And 3 years afterwards the tumors started growing again. One grew to 8-1/2 centimeters in one year, so I decided that it was time for a hysterectomy.

For me the bottom line is that the UAE was the right thing for me to try at the time, even though I ended up with a hysterectomy. There was a chance that it would be a long term success. And even though it didn't end up permanently successful in my case, I have the satisfaction of knowing that I tried, before resorting to the hysterectomy.

Good luck to anyone who is still trying to decide!

Hi all,
I haven't been here in a while. I'm having my second embolization in a week or so. My first one was a year ago, exactly. The bleeding was helped a LOT, but the size of fibroids remained unchanged. They've started to grow again, so I need to do something. I got my embolization report and had a second opinion. The embolics that were used have been discovered to be prone to infarction failure (killing the fibroid) and my fibroids were only 31% infarcted. Fibroids that aren't completely dead can grow new blood vessels. So it's worth trying again.

For the woman who was eating too much chocolate because she was worried about the procedure, a hysterectomy would be a hundred times worse, so this isn't bad. In fact, I'm doing my next one with my husband at sea and my mother out of town, so I'll be recovering with the help of freinds. A girl has to do what a girl has to do.

Just take it easy.
M

I had a UFE in December 04 and seems like I'm spotting lightly again. However, my periods are 3 days and regular. I was told my largest fibroid was about the same size and that because of my age I should "wait and see" since I could be going into menopause and that usually shrinks them naturally. I plan to repeat the UFE in Jan. and have a hysterectomy later next year if I still have a problem.

While I know there is a big chance that it may not have worked or will work again, it bought me time to think and better mentally accept the possibility while also giving me a real chance of it maybe working. I'm curious why you are so scared. Yes, there was pain after the procedure for a while, but it was like a real bad period cramp from time to time and they give you "la-la" medicine for pain. I don't know what all these "horrors" are that people would think it could be worse than a hysterectomy. I don't have regrets other than not knowing if it will or has actually worked.

I have been searching these website hoping to get an idea of what the frequency is of this procedure being redone and how long they have lasted before problems set back in. I think it has to do with age for some (menopause) as for success but don't really know since this procedure is so new. If you know of anyone else who has had it, please have them post a response to me.

Hope this calms your fears a little.