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UFE a real alternative?
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03-30-2004, 04:38 PM
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HysterSister
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Posts: 22
Hysterectomy:
Ovaries: Kept 1 or both
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UFE a real alternative?
Yes I go to that post alot.... EMBO on the yahoo groups.
I would not say that I had intense pain for long but I did have some pain and other things happen with the first UAE.
I am hoping that this will at least shrink the uterus enough so I don't need the vertical incision when I do get the uterus out.
I already have the bikini cut and really do not want any more scar tissue.
So my idea is to try to get this 20 week size uterus shrunk and then go for the hyster.
Kathi
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03-31-2004, 06:20 AM
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Guest
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Posts: 29
Hysterectomy:
Ovaries: Undecided
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UFE a real alternative?
Kathi, sorry to hear that you have to go in for a second UAE. But I think your reasoning is sound.
Hi everybody,
I am scheduled for my UAE on April 8th. I am also aware of the forum on Yahoo, but I do think its a good idea to discuss alternatives in particular on this forum... hyst options and alternatives.
IMO hysts are often the only alternative given to a lot of women. I had three gyn's say that a hyst was the only real option for me. I realize there are complications with any procedure but keeping my uterus and avoiding major surgery are worth a try. The radiologist did explain why a UAE doesn't always work. Like Kathi I will always have an option for a hyst later (I am hoping to be in the 90+% success group).
Take care all in your decisions and ruminations :-)
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03-31-2004, 08:40 AM
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HysterSister
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Posts: 22
Hysterectomy:
Ovaries: Kept 1 or both
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UFE a real alternative?
EXACTLY what I am saying Aine!!
I want to use up all my options before I go
thru a major surgery that will posssibly do more
than leave me a huge scar and more scar tissue....
There are more risks involved and I am not sure I want
to give up the uterus yet. It keeps your heart healthy
the DR says. SO I will try this last ditch effort to prune
those fibroids with the UAE and I can always opt later
for the hyster. I too am hoping to be in that 90% that sees major improvements!!
Kathi
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03-31-2004, 09:03 AM
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Guest
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UFE a real alternative?
Hi Kathi and Aine,
Couldn't agree with you both, more. Each individual's circumstances are different and we each need to weigh and assess our own situation. I too, know that hysterectomy is an option, but I want to exhause the UAE option first before going through major abdominal surgery. (My fibroids are too larger for a lap/vag procedure i've been told.)
I found another informative website called auntminnie.com.
If you do a search on "uterine" it will pull up numerous articles related to UAE. There is alot of discussion regarding the IR's vs the OB/GYNs. This appears to be a hot topic with financial implications.
I wish you both luck with your procedures. Aine, you are having yours on my birthday. I will keep you in my thoughts. Kathi, good luck on your second attempt. I received my MRI results and it's looking like a go for me. I am getting a little nervous but plan to forge ahead and have the procedure in May.
Take care all and I'd like to hear more from others who have recently had the procedure. I am curious what level of consciousness there is for the actual procedure. I had a very hard time with the MRI (claustrophic, although I didn't realize I was! and got nauseous from the contrast injection). I feel like a wimp these days! I am also curious if any knows if the embolism is done one one or two arteries (both thighs)?
Thanks everyone for the support!
lori
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03-31-2004, 10:13 AM
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HysterSister
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Posts: 22
Hysterectomy:
Ovaries: Kept 1 or both
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UFE a real alternative?
HI, The cut is usually done to one thigh.
The level on awakeness depends on the DR.
and YOU! I didn't want to be all the way out
of it so I told them to hold off drugs after the first
ones they gave me. I did OK. but this time I think I'd like to be in a happier state. =) less pain I am hoping.
It is not a bad procedure.... and depending on
your body whether you take it well or not.
I could of went home the same day but I was
sick from the drugs and nerves. So I opted to spend the night
as the Dr wished me to do.
Kathi
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04-12-2004, 10:52 AM
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Guest
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How did your procedure go?
Hi Aine,
I just wanted to check in with you to see how your UFE went? I hope you feeling fine and will be interested to hear about yoru experience.
Take care!
Lori
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04-12-2004, 11:01 AM
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HysterSister
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Posts: 22
Hysterectomy:
Ovaries: Kept 1 or both
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UFE a real alternative?
hi, I had my 2nd UAE on 4/5 and it was very painful.
I do think they could of medicated me better and
kept it alittle more pain free. Since my uterus is so large we did do the UAE in 2 steps as the IR DR did say if he shut down the whole blood flow at once I would of felt like I was gut shot and the pain would of been even more than what I had.
My suggestion to anyone who is going in and has a large mass of fibroids is to insist on a spinal or saddle block like when you get numbed totally from the waist down.
ANyhow I survived and was home the next AM.
Kathi
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04-12-2004, 03:45 PM
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Guest
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Posts: 29
Hysterectomy:
Ovaries: Undecided
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UFE a real alternative?
Hi Kathy, Laurie and all ladies...
Yup, I survived the UFE. I am back at work on Monday (out thurs thru sun). Got in late (about 10) but still am using pain killers.
I went in for the procedure early on Thurs 8th (Happy Belated birthday Laurie!!!). Arrived at the hospital at 7.00 am, some admin problems meant I didn't actually go into the operating room until just after 9 am.
I had a "catherer" put in for my bladder - which was great because the actual procedure took about two and a half hours. I was given a sedative and a local anesthetic for the puncture point, but was awake and talking with the dr and nurses during the whole time. They used my right upper thigh for entry, but actually prepped both legs (dr said about 5% of time the artery on the right leg is not big enough, they then use the left).
You have to stay awake because during the procedure they take a lot of images and often ask you to stop breathing for about 10 seconds at a time. There was a set of TV screens where I could watch the embolization catherer move into the arteries. They embolized the left side first and then the right side.
I experienced some pain during the procedure - but not too bad. I was then wheeled out to the recovery room. At that time they set up the pump for pain killer..... problem was that it was not plugged in properly - the pain got out of control and it was "baad". They finally figured out that the pump was actually not working.... (amazing that they won't listen to you!! - it was the Dr. who said, so how much exactly has she gotten in the last hour?..."0" oops sorry).
I must say that the pain can be excrutiating. Also, partly my fault for trying to be a little too stoic.
If you are in pain, ask - no demand more medication or a change of medication. I was being administered Dilaudid, but they had a time out feature (10 mins) between and the dose itself was too low. I ended up again in the middle of the night with extreme pain and was eventually given morphine - twice before it subsided. Also every time I got up to go to the bathroom, I would throw up.
End result, next morning I was too weak and in to much pain to go home. They upped my dose of Dilaudid (doubled and time out to every 6 mins). Gave me more nausea medicine. Checked out about 5 in the afternoon.
Sat morning - still lots of pain. Called the dr. again... recommended upping pain medicine amount again. That did the trick. Now I can function (by late afternoon). Ate some chicken soup!
Sunday... Pain is still there, but a dull roar. Did some light cleaning, couple of washes. Changed over to Percocet, one every four hours. Ate cereal and soup for dinner.
Monday.... Pain is still there, but I think I can handle this. Still on Percocet. Can't drive but did work all day (I am in an office environment).
Overall.... Hope this works, but I feel like it will. I need to be better at communicating my pain levels and pushing for better "pain management". I am still very glad to have chosen this procedure. Just want others to be aware of the pain and to be more aggresive about their needs.
Please feel free to email me with questions.
Thanks sooooo much all of you for your support! Don't think I could have done it without you.
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04-12-2004, 04:02 PM
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HysterSister
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Posts: 22
Hysterectomy:
Ovaries: Kept 1 or both
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UFE a real alternative?
hi,
I agree...... WE must be more vocal about the pain.
I was in so much pain I was SHAKING like a leaf. The nurse kept
asking me IF I was cold and I kept saying I was in pain. It felt ( no lie) like I was going to have a baby. The pain was so intense and I swear if they would of asked me one more time if I was cold I was going to scream. I needed better pain management and that is my biggest complaint. When I got to my room the pain pump was NOT hooked up, I had pressure from the pain and the cath for the bladder... needless to say I got up out of bed and KNOW the procedure to take the cath out and did... That helped alittle but I still felt quite alot of pain and when they finally got around to medicating me they gave me the dickens for 1) getting out of bed and not keeping my leg straight and 2) taking it upon myself to take the cath out. SO needless to say I had a few bad marks on my chart. HAHA My uterus being 20 weeks size any pressure in my bladder KILLS me..... and if they would of had me happy and pain free LIKE they said they would STRIVE to do I would not of been out of the bed trying to make myself more comfortable. OH and whomever thought of that tiny basin to throw up in WAS out of their minds......
I took one look at the nurse and told her to get me the waste basket or a bucket. I did not keep solid food down for almost 3 days after UAE. I could not hold water or ginger ale down!
So all in all I say GIRLS UNLEASH YOUR TONGUES AND TELL THEM YOU ARE IN PAIN. on a scale of 1 to 10 don't BE SHY!!
We really need to educate them and make them deal with the pain involved.....
I was not a happy camper but honestly didn't want to scare anyone.... not all Drs. or hospitals will keep ya hanging when you have that kind of pain.
Kathi
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04-12-2004, 04:58 PM
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Guest
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Glad you have that behind you!
Hi Aine,
Thank you so much for the detailed report on how it went. I must admit, as the date draws closer, I am getting more nervous and hesitant.
I am so sorry that you experienced so much discomfort. I was impressed by your positive attitude though and glad you are still confident in your decision. I didn't realize I will need to stay 'coherent' for the procedure. I was really hoping they would send me into la-la land. I had conscious sedation for a colonoscopy a few years back and it was wonderful! Don't remember a thing and my daughter said I said all kinds of funny embarrassing things!
Anyway, I'm curious what causes all the nausea? Is it the pain medication? Based on what you and Kathy are saying, I will definitely be vocal with my pain management. I'm curious if it's a 'cramping' pain similar to childbirth....been there, done that.
As I sit here ready for my period any minute and experiencing the usual nightly trips to the bathroom, bloating, ect. I'm almost hoping for the worst period ever this month, just so I go into this feeling 100% confident that I 'need' to do this.
Aine, thanks for the belated b'day wishes. How sweet that you remembered given all you went through that day. I sincerely hope you get the relief you seek. Keep us posted . You are really a trooper and very strong lady to be back at work already! I also work in IT world. I've told them I'll be out for a week. If I go back sooner, so be it!
Take care and hope you are feeling better each day!
Lori
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