(Tuesday, January 30, 2007) Decided to edit this post significantly. In my zeal to present different recovery experiences, I seem to have created a monster. Women are reading this post and becoming frightened over the UFE/UAE procedure. I’m obligated to try again. So, I’ll include my own recovery experience on this post to provide balance.
Note: Please realize that you are online. By its nature, the Internet will draw women having problems with fibroids and looking for answers. Women with great UFE/UAE recovery experiences probably aren’t searching online for fibroid information. I discovered this when looking for Lupron information several months ago. I was alarmed by the disproportionate number of negative Lupron experiences and decided to start a blog with a more balanced perspective. Hopefully, I’ve come close to that.
Last point and then I’ll talk about my recovery. I have a post about the bell curve. (Actually, there are a few women on the site that mention it.) A bell curve is a very good way to think about any fibroid treatment. Some women will land on one end of the curve or the other but the MAJORITY will fall in the middle right under the bell. The MAJORITY of women who have this procedure will benefit from it. The MAJORITY will have a recovery that falls within the “7-to-10-day” window.
From FibroidSecondOpinion.com:
Many women will notice a relief of fibroid symptoms within six weeks after the procedure. However, it takes a few months for the fibroids to fully shrink and the full effect of the procedure to be evident. About 90 percent of women who were bothered by symptoms related to the size of their fibroids will have a significant improvement and be satisfied with the results. Likewise, about 85 percent of women who had heavy bleeding from their fibroids will have lighter and shorter periods and be satisfied with the results. About 10 to 15 percent of women who have UFE will continue to have bothersome symptoms and usually require other treatment.
Note #2: You have to take into consideration the size, location, and number of fibroids in your case. This will determine the success of your UFE/UAE and the recovery you experience afterwards. I was not able to have a UFE until two small (I think 2cm each) submucosal fibroids were resected via Hysteroscopic Myomectomy first. This was done to minimize my risk of complication post-embolization. PLEASE talk to the Interventional Radiologist about your specific case and your specific fibroids (size, location, number). I cannot stress this enough.
Here’s my experience.
From the post that describes my UFE recovery:
What did I experience?
- Intense pain and nausea during the first 12 hours. I think the nausea was much worse than the pain.
- Moderate cramps for a couple of days afterward. I took over-the-counter Motrin.
- Vaginal discharge for about 10 days. Mostly mucus-like but some blood was present. Moderate to light.
- Digestive problems for about a week. Could not eat solid food. Constipation and stomach pain.
The pain right after my procedure wasn’t much worse than the previous cramps I experienced every month. It really was the nausea from the drugs that made me feel worse. By the next day, I was listening to Bob Marley and feeling great! I did not experience very much pain later. Constipation (from the hospital drugs) was my biggest problem. My recovery fell within the “7-to-10-day” window.
From the post about my period after UFE:
Approximately a three-day period? I’ve NEVER had that. Light bleeding the whole time? I’ve NEVER had that. I keep waiting and waiting for the other shoe to drop. It does not appear that it will. This is now reality. My “new” new normal. I am happy/goofy/loopy but confused. It is so different. It cannot be a period. I will have to call it a question mark.
Today (6 months post-UFE):
Periods range between 3.5 and 4 days. My last one was 4 days but I spotted most of the time. On days 2 and 3, there was occassional light-to-moderate bleeding. My periods are still question marks! I cannot even begin to tell you how this procedure changed my life. I have the energy to live and the ability to go out in the world and do it. I am really well physically, mentally, and spiritually.
Links with more information:
Society of Interventional Radiology
Treating Uterine Fibroid Tumors | Fibroid Embolization
Surgical Video of Uterine Fibroid Embolization (OR-Live.com)
What to Expect from a Uterine Artery Embolization
Possible Complications from Uterine Fibroid Embolization
Okay. Here’s your chance. Let us know how you’re feeling!
——————–
Related Posts:
The UFE Experience. Wasn’t that a band during the 70s?
Memories right before my Uterine Fibroid Embolization
Memories directly after my Uterine Fibroid Embolization
My first several hours post-Uterine Fibroid Embolization
I’m really starting to think my wiring is kind of screwed
Two weeks after my Uterine Fibroid Embolization
Gosh…my period turned out to be a question mark!
My condition one month post-Uterine Fibroid Embolization
UPDATE: My condition two months post-Uterine Fibroid Embolization
UPDATE: My condition three months post-Uterine Fibroid Embolization
UPDATE: My condition four months post-Uterine Fibroid Embolization
UPDATE: My condition five months post-Uterine Fibroid Embolization
October 19, 2009 at 3:13 pm
Ladies:
The doctors said I may have had “drug naivete” and just didn’t tolerate the dose well. Also, I do have sleep apnea which they think probably also contributed to it. I’d had four surgeries and didn’t have a problem with any pain meds but I couldn’t tell them for sure if I’d ever been given Demerol. The reaction I had was unusual but understandable especially given the apnea. So if you have apnea, please tell your IR and anesthesiologist.
Sorry I didn’t explain this better before!
October 20, 2009 at 1:34 am
Hi Kerri, thanks for sharing your experience with us, please keep us informed on how you do over time and let us know if you think you would it again or not. Best to you!
October 20, 2009 at 3:25 am
Hi Kerri,
It was very interesting to me that you sited a incident related to your fibriods creating a similiar situation like kidney stones. I too had that happen and when they did further testing figured it was the fibriods and not kidney stones.It was excrutiating pain when a fibriod press on that area. Good luck to you on your progession.
Susan
October 20, 2009 at 11:45 am
I have UFE in mid March (7 months ago). I had significant issues ever since, including, severe abdominal pain, constant discharge, severe cramps, 2 hospitalizations, bladder issues, fatigue, sleepless nights, and 3 MRIs. I am scheduled for a hysterectomy this week because I can’t take the pain any more and need to have my life back. The other day I passed fibroids that felt like 2 golf balls were coming out (7 months after the procedure!). I would not recommend UFE to anyone based on my experience. Had someone told me about the potential adverse effects, I would have probably opted for a hysterectomy from the beginning. My UFE experience has been nothing short of a nightmare. Since the day of the procedure, pain management was ineffective at the hospital. That was my first sign that the procedure wasn’t right for me. My doctor’s office said to wait and be patient. I waited 7 months; too long; I am looking forward to the hysterectomy; how sad is that.
October 20, 2009 at 12:15 pm
Elizabeth,
Wow!!!! There is NO EXCUSE for a UAE procedure to not be correctly managed pain wise. I have heard of one other similiar situation and I beleieve you really have to shop for a IR that has their procedure down. That also means that they have a cracker jack nursing team to monitor the drugs.
I also think the patients who have a lot of clots passing have the fibriods in the interior of the uterus. Patients should determine if they have subserol,intermural or submucosal. I am sad that the UAE didn’t work for you but,
at least you gave it a try. Hope you are back to normal after your hysterectomy. Keep us posted on your thoughts from that experience.
God Bless,
Susan
October 20, 2009 at 12:44 pm
Elizabeth,
I’m sorry you’ve been having such a terrible time. It’s too bad you now have to have a hysterectomy and I sure wish you an easy recovery! Hang in there and all the best to you.
October 20, 2009 at 12:46 pm
Ladies:
Thank you for your best wishes and I will definitely keep you up to date.
October 20, 2009 at 1:54 pm
It saddens me to hear so many disappointing stories! Especially when you have hope that one thing is going to work and it doesn’t now you have to schedule something possibly worse. You have to do what’s best for you and your body keep that in mind. There’s never a “bad” decision when you’re trying to better your health. It has been 4 months since my procedure. The procedure itself went fantastic! I felt zero pain, even when I finally went home pain was minimal. My periods are about the same. I still have back pain and heavy bleeding. There’s been a slight change but nothing dramatic. I do think each period gets a little better. I’m hoping in a year, I’ll be fine and this will be a thing of the past. Stay strong ladies and good luck!!
December 27, 2009 at 4:11 pm
I am 9 days out from UFE. This far I feel the procedure has been successful and am glad it was done. One of the biggest issues caused by my fibroids was constipation and that seems to have been relieved. That alone would be worth the ufe. I did have a few sleepless nights due to the steroids and now that I am not taking them I am fine. The first few days were rough. I think the pain meds made it worse. I stopped taking the vicodan 5 days after the surg and wished I stopped earlier. i was instructed to take tylenol and respond better to advil but was told not to take it. As a result I was on the pain meds a but longer. I will check back as I progress.
October 28, 2009 at 12:38 pm
OK finally made it to 7 months with not to many symtoms no periods then start my period a light one 5 days two weeks before we went on vacation.
Then as soon as we get to the Island what happens MY DAM PERIOD!! sorry for cussing ladies but this is one big disapointment. So I had a normal period then like a few weeks break then this period which It is now day 10 and my period is still going strong. It started out like spotting the second day into the vacation then a constant very light peiod for a few days then medium flow then heavy.
So far it is still on the heavy side but the clots have not been as big as they were in the past before UFE which normally would be the size of a orange or grapfruit.
They are small and some even stringy. I will assume that is the results of the UFE. I have my yearly checkup in January and if things do not calm down then I will get a hysterectomy I am done.
October 29, 2009 at 7:49 am
Good morning Ladies: As of this week, my discharge has stopped and I’ve slept through the night a few times without getting up to pee. My stomach has gone down a little but I definitely still feel the bulk of the fibroids when I lightly press my stomach, especially right above my belly button. Next week I see the gyno – very curious about what he will say. Have a good weekend and stay well.
November 2, 2009 at 8:34 pm
Hi ladies! I’m a newbie here. I actually cannot believe I stumbled onto the site! It is to good to be true! There are people out there that actually understand how I’m feeling! Forgive me if I take up quite a bit of room on this site. I have lot’s of questions and things to say.
I had my UFE 9/6/09. It was done emergently as I had lost at least 2500cc of blood. I’m a labor and delivery nurse and that is more than we like to see ever! I was close to SERIOUS trouble with my blood loss. 6 days in the hospital and lots of prayers. My IR said I was a rare case. Most are scheduled. My other option was a hyst. However my dr. was reluctant because I had already lost so much blood. Had I been able to read and understand the risks vs. benefits I might not of chose to do this on any given day. I know it saved my life. Anyway, I’m here and not sure how I feel. First off, did anyone else gain weight prior to their UFE? Have swelling with pitting edema? For a year before my UFE, I had very heavy periods lasting 7 or so days, gained 40 pounds, swelling in my legs and ankles with pitting, and high blood pressure. Also, I had no idea there was a tennis size fibroid growing inside of me. I’m 43 and I have never had so called female troubles. So I’m 8 weeks post UFE. My first period was very painful, not to much bleeding. I’m now on my second one. Not as much pain, but still cramping needing ibuprofen. Bleeding is heavier, scaring me a little. I’m bloated and swelling. Not swelling as much as pre UFE. Before my period I started sloughing my fibroid a little. I was wondering the the heck this was now! Until I read up and figured it out. Some things I read say it is normal. Some say call your doctor right away. I work with my gyn, however nobody really seems to know a lot about the post UFE. Everyone one is different and depends on what you read. I’m a nurse and I have no idea. All I know is the uterus is nothing to mess with. Any ideas?? Where do I go from here?? Looking forward to a world where someone gets it!!
Thanks!!
Jody
January 23, 2010 at 8:46 pm
Hi – I just found this site/forum today. How is your recovery coming from the UFE? Today is 1/23/2010, I am planning on having a UFE done this next month or asap. Am trying to get as much information as possible and wanting to find plenty of women with pros and cons for this procedure. thank you,
November 4, 2009 at 10:52 am
Hi Jody! It’s been about 5 months since my UFE and I must say I’ve been a little luckier than most. My procedure itself went quite smoothe. I had little to zero pain. However, I will say that my periods are just about the same as before. Pretty uncomfortable and painful, I have heavy bleeding my second and third day only (I’m on for about 4.5 days). I think I’m more hormonal since my procedure. All in all not too many problems out of the ordinary.
November 5, 2009 at 10:57 am
Its great Ive come across this website. I had UFE just over a month ago. The procedure was fine but the after effects were awful – I have severe post trauma’s, the raging temperature, nausea, bleeding and was off work 3 weeks. My fibroid is massive (over 9 months in size) and the other day I started my first period since the procedure. Basically, it was 10 times heavier than before (and that was bad!!) – I had severe cramping, nice clotting, anemia and generally feeling awful – yet again Ive had to take time off work. Anyway, I went to my GP and they are not happy, they want my gyno to see me as it doesnt seem right ,so I’m now waiting to hear from the hospital- the fibroid is very tender and swollen and it needs checking out. Ive now been put on hormone pills to stop the bleeding for 2 weeks but as soon as I stop taking them I know it will start again. Like some other comments, I researched UFE before I had the procedure and only found the ‘plus’ comments. Since I had it done I feel worse and more tired, lathargic and then this happened! At this moment in time I would have rather had the full op and I just can not see the UFE shrinking such a huge fibroid.
November 5, 2009 at 11:04 am
You’re right Justine. I think where I see the biggest problems are with the larger fibroids. Mine were relatively small. I think my biggest one was the size of an egg. My Radiologist said if it were much bigger than that he wouldn’t recommend a UFE. As I continue to read the problems women are having in the aftermath MOST (not all) are with the larger fibroids.
November 5, 2009 at 12:01 pm
Justine, I’m so sorry you’ve had such a rough time! Can you tell us the size of the fibroid itself? That is a lot more specific and helpful than to compare it to a pregnancy even if that is something we sort of relate to! I hope you figure out what’s happening and get better soon! Let us know how it goes.
November 5, 2009 at 12:10 pm
Ive never actually been told the size I’m afraid, only that its the size of a 9 month and was growing rapidly
November 8, 2009 at 12:18 am
Hello justine, for some reason I am no longer recieving the email updates for this site so I have been having to book mark it to see updates.
Just to give you a idea of what size yours might be mine were 4.5 cm I had about 3 they said I was about a one and half to two month pregnant uterus. 4.5 is a little less then two inches . I would ask for the report if you have a fax machine have them fax it to you. I would keep a copy for your self and if you have a family doctor it is always best that not only the obgyn have a copy the IR and the family doctor too. Makes it easy to access in case of emergency. Hang in their and remember it takes time. I would give it a year if you can and at least before jumping onto surgery that is what my goal is though sometimes I feel like calling like now…. and telling them to just rip that darn uterus out.
hang in there
best regards,
lise
November 8, 2009 at 1:33 am
Thanks Lise
I’m seeing my gyno next Monday (that’s the UK NHS for you!!) but at least it’s an appointment. I have several questions to ask him, including size although to be honest they dont seem to work by actual measurements here, or at least at my hospital. I guess that things may improve but as my fibroid is massive (as every doctor/gyno and radiologist has pointed out!) I just cant wait a year with this pain, tiredness, anemia and general feeling of unwell. I’m pretty sure my gyno wont do much at the moment but I will see how the next few months pan out. I know that as soon as I stop the hormone pills come next week I will be back to square one and bleeding just as heavy, with just as much pain. When I see my gyno next week I will see what he says and let you know!!
Justine
November 8, 2009 at 5:06 pm
lise, try signing up for the automatic updates again. The site was down for a month or two because our Inquisitive Geek webmaster mysteriously disappeared in 2007 and the site domain wasn’t renewed or something like that. ( WordPress was kind enough to keep it going, although we have no way to administer any parts of the site.) So just sign up for updates again… I think it should work – I’m getting mine.
November 8, 2009 at 6:04 pm
Period #3 and they’ve gotten progressively heavier. Boo. The IR’s office wants me to have another cycle before I come in, but I have a script for an MRI, and appointment set up with the GYN “just in case”.
November 19, 2009 at 6:18 am
Hi All! I read your blogs last week to know what really happens during embolisation aside from the one after. So I will share my experience: (Please note that this was done in Tilburg, Netherlands, the first ever hospital embolisation was done 10 years ago. The french gynecologist introduced it to this hospital)
Date of Embolisation: November 17, 2009 (yes 2 days ago)
Size and Location of Fibroid: 7.5 x 5.8 cm Inside the Uterus
Procedure:
They first put a catheter in my vagina then administered a pain killer and paracetamol inside my anus, then brought me to a room where they injected the needle where the morphin/analgesic passes through. I have a button to press every 5 minutes, twice before the actual procedure.
Then they brought me to the operating room with 2 assistants and 1 radiologist, they were wearing radioactive suits inside their operating clothes. They have this really high tech flat screen tv’s infront of them plus a sort of like a big robotic radioactive flat camera for them to see how the tube is going along.
Be aware that the radiologist asked me if I still want to have a baby, I said no because I already had a ligation during my last CS. So he told the assistant to put 2 marks both on my left and right groin. Then, the radiologist injected a local anesthesia to the inside of my leg near the vagina both left and right. So instead of only 1 for most patients, he opened 2 holes, both left and right. (At this time I could not see what they were doing because I was busy looking at the clock administering my anesthesia every 5 minutes so that I won’t feel any pain). So he put the tubes (probably on the right side then on the left) because I felt a warm liquid coming inside my uterus twice. That was the gel that would probably stop blood going to the fibroid. After that they put a plaster on the hole and then both assistants pressed each hole at the same time for 10 minutes. They pressed really hard to stop blood from coming out of the arteries they said.
My procedure went really well, about 50 minutes. Then they brought me to the recovery room. At this point I was already groggy and drugged so I was really tired and just want to sleep.
Recovery room:
There they checked my blood pressure and they put something on my finger to probably check the pulse. Everything went well except that I felt really warm and perspired for a few minutes (like a hot flash?). After more than 30 minutes, they already sent me to my hospital room.
Hospital room:
When I arrived there i hardly can open my eyes but I was still able to talk to my husband for a few minutes. I needed to lie flat for 6 hours to stop the blood coming out from my arteries. After 6 hours I woke up and still do not want to eat. I was just drinking water. I also have to press the button evreytime I feel pain, they said every 6 minutes, but since I am sleeping and tired, I could not do that.
The next day:
My infuse (analgesic/morphin and water) was there for 24 hours and took it out including my catheter. AI was able to take the plasters from the hole/cut they made and I was able to take a shower. I was then allowed to leave that day. Before I left, they administered pain killers and paracetamol inside my anus. I also received a receipt from the doctor for pain killers that I need to take 2x/day for 10 days. It is called Diclofenacnatrium Actavis 50mg. I was also told that I can mix this with Paracetamol. And when the pain decreases, I should stop the pain killer and just take Paracetamol instead until the pain totally goes away.
At home:
I felt some pain and i can see that the right side of my groin and surrounding it has like 3 black and blue spots. I dont know what it is but it not casing any any significant pain.
Pain:
Please note that my history, I never had any contractions (even when water came out for 3 days already) before giving borth that was why I need to have a CS both my 2 kids. So probably I do not feel any significant contraction pain that they told me I should expect. Though I feel constantly in pain, it goes away when I take my medicines.
Today I ate my favorite cereal and noodles so im back in fighting form even if I did not finish it.
One last thing, I also had gas pains in my stomach and letting it out was really a relief and decreased the pain. Until now I still have not made poop and I am looking forward to that.
The one thing I was glad was that there were no complications after the procedure. My only hope and wish right now is that my recovery would be fast then I can live my life normal again and work!
Please do not hesitate to ask me any questions and I would be glad to update you if any of you wish. My telephone talk appointment with my gynecologist will be in 10 days and my MRI (to see how much it shrinked so far) will be in 3 months.
November 20, 2009 at 1:04 am
Well, Ive been for my follow up appointment at the gyno after UFE. Unfortunetly, its hasnt worked at all and in fact the fibroid has even grown more since the procedure (now being 22 months in size – sorry no measurements!). Basically, this needs to be sorted asap and its going to now be an emergency full hysto just after xmas. I dont mind having a hysto as I dont plan a family but I’m still very nervous about the op. My gyno talked things over with me and this is the best option in my case. I’m now waiting on a date x
November 20, 2009 at 4:16 am
Hi again! Just an update …
Pain Killer Medicine: Diclofenacnatrium Actavis 50mg … i stopped taking after 1 pill because I really became nauseous… i realized this is the medicine that they have been giving me in the hospital that makes me nauseous. when I read the indication inside, the side effects would be heart attack, blood loss and ANEMIA. That was the reason I stopped. I am anemic and taking my iron pills now. I feel better no more nausea and no more hard time breathing, and if I feel pain, i just take Paracetamol.
Oh and I was able to poop so it really really helped because the pain decreased.
November 28, 2009 at 7:07 pm
Kaye, thanks for the very detailed description! glad you are doing better and please keep us posted.
November 20, 2009 at 6:56 pm
Hi,
Question for anyone out there.
I had a UFE beginning of August, and although it seems to *me* to be unsuccessful due to the amount of heavy bleeding / clots I am still passing, a follow up MRI I had this week disputes that fact. Previous measurements of this intramural fibroid in July were 7.1 x 8.4 x 9.4 cm, while the results of an MRI from this past Wednesday indicate a size of 6.1 x 5.1 x 4.7 cm indicating shrinkage. The clots are not as big as they were prior to the UFE however my quality of life has not tremendously improved. Is there still a possibility this will get better? I’m sure the IR team will be pleased with these results, but symptomatically speaking, I am not all that thrilled.
I’m two weeks out before I see the IR, and four weeks out before I see my gyn. At this point I am rather optimistically exploring various hysterectomy options.
Julie
November 24, 2009 at 8:05 am
Hi Julie. The doctors said I’d had a 50% reduction after a year although this is in volume not overall size so sounds better than it is – from 11cm to 9cm. I have also not had any real change in symptoms – still need to pee a lot and still can’t sleep flat in bed so sleep in an upright recliner. I occasionally have a slight tinge of brown in my mucus which might be a bit of fibroid passing out although I don’t know for sure. My periods were always light anyway but now seem to last more than the original 2 days although still light. After years and years of terrible pain each month they are now virtually painless but this was diminishing before I had the UAE so don’t know if it’s coincidental. As far as the docs are concerned this has been a success and they won’t scan again for 3 years. So although hopefully the fibroids won’t now grow further I’m still left with the same symptoms!
November 24, 2009 at 8:27 am
Hi Meryl,
Not exactly sure what you mean by volume verses size?
If it shrunk 50% in volume the size has to be affected and shrink. I would think it would be flatter and softer in consistancy? I am curious where did you have your UAE
performed?
Susan
November 24, 2009 at 11:09 pm
Hi Ladies,
I’m long overdue for a posting. Just to recap, I had UFE in January of this year and had some common complications (pain, constipation, etc.). After a few cycles I realized the heavy bleeding wasn’t improving as much as I hoped. I switched to a new GYN and she recommended the Novasure endometrial ablation. I had it done 8/31, was completely asleep for the procedure, spent about an hour in recovery and went home. My only problem was severe nausea (which I suffer from with any form of anesthesia) for about 12 hours. I had an Rx for narcotic pain meds but never needed to take it. I had some mild cramping and Aleve worked just fine for that. There was minimal bleeding after the procedure and by the next day I only needed a pantyliner. I took the week off from work, just in case there were complications, but I was fine. I took it easy the day after the procedure and was able to start enjoying my vacation by day 3.
Things have been great since the procedure. I still have mild cramping every month but that’s it. Last week I had my first period since the procedure. It was totally unexpected so I’ll be on the lookout for it next month. It was very light and lasted just 3 days. Some women who have this procedure don’t have a period at all, so I hope that period wasn’t the start of something. We’ll see.
I hope someone finds this info helpful. Happy Thanksgiving to you and yours!
November 25, 2009 at 7:49 am
Hi Pru,
It was great to hear from you. I was wondering what was happening with you. I hope the abalation will continue to work for you. Your description is well documented.
Happy Thanksgiving
Susan
November 25, 2009 at 4:58 pm
Hi Susan. I had my UAE performed by Dr Walker in Guildford Hospital in the UK. They said it had shrunk by 50% but the measurements had only gone down from 11.5cm at its largest to 9cm so I don’t really understand either
Of course unlike a lot of people I didn’t have the op to help with excessive bleeding, it was an attempt to see if the fibroid was causing the lying flat on my back problem so I still don’t know if it is or not!!
November 28, 2009 at 7:16 pm
Meryl & Susan, it’s just the difference between volume and diameter… one tends to think a 50% reduction in volume would mean a 50% reduction in diameter… unfortunately not so… somewhere on this site someone spelled out what the percentages actually are…. When a doc tells us we’ll experience a % reduction in volume, we should definitely ask what that means in our fibroids’ actual diameters! I’ve gotten to the point where a reduction is just not good enough for me… I want mine OUT!
November 30, 2009 at 11:25 am
Just finished my sixth period since UFE. Getting better! This was the first time I didn’t wake up in unbearable pain two days in a row. I didn’t have much clotting and bleeding was SLIGHTLY lighter. I had some pain but Tylenol worked just fine. I’m continuing to pray that each period gets better and better.
December 20, 2009 at 1:55 pm
Hi Ladies,
I just had a UFE on 12/16/09. My procedure and recovery were/are HORRIBLE. The IR & his staff are wonderful but I think they did me a big disservice by not admitting me overnight post UFE.
I moaned so loudly during the procedure that my friend could hear me in the waiting room. They had to give me my meds via iv push since they apparently had no pca pump. The first day/night post op was pure hell. I spent the night in horrible pain and vomiting. I wasn’t sent home with any meds for vomiting but luckily I had just been given something a week prior for vomiting related to gallbladder issues. I went home on percocet & toradol. It’s been 3 days post procedure and I still can’t eat and I still hurt badly if I don’t take something every 3-4 hours. I can at least now take over the counter naproxen occassionally so that I’m not popping narcs all day.
I do think that the procedure has been somewhat successful though. I no longer have the constant ringing in my ears so I think my Hb may be coming up. I also don’t feel as much pelvic pressure as before.
I would still do the procedure over again I just would have chosen a different doctor to do it.
December 20, 2009 at 4:23 pm
Kee,
Yes you picked the wrong IR. There is no excuse for what happened to you. It is a requirement you stay over night with a pca pump. It is a requirement that you are administered iv pain med during and immediately after the procedure is completed. During your first week after the procedure most people are still taking some form of pain meds for 4 days. Hang in there. I just hope this serves as a guide to future UAE patients. I have seen them done well by IR’s and done VERY POORLY. You have to do your homework.
Susan
December 20, 2009 at 6:08 pm
Thanks for the reply Susan. Unfortunately my gyn was dead set against my getting an embolization & reluctantly gave me a referral to an IR. I have a very complex medical history so no one doctor is comfortable taking complete control of my care. To make matters worse, my PCP sold her practice so my new PCP has never seen me. I was told that the procedure would be outpatient and questioned that . I was told that I would be transferred to a hospital for an overnight stay if need be. Unfortunately by the time the procedure was done, I was so sick that I could really not be a good advocate for myself. As you said, I hope this will be a lesson to those future UFE/UAE patients to not allow anyone who doesn’t automatically do a 24 hrs ops admit to do the procedure. I am in pure hell!
December 21, 2009 at 4:59 am
Kee… wow, so sorry you feel so bad! Hope you get through it soon. Thanks for sharing your experience and keep us posted.
December 21, 2009 at 2:28 pm
Kee,
My sister in law had UAE done and stayed overnight but, the idiot nurses didn’t give her the correct pain meds.
She was in sheer agony for that night. When the IR came in the next morning he was informed of what happened and he apologized saying that should have never happened.
When ever I have any kind of surgery or procedure I always have my husband stay overnight with me to advocate. My experience with Froedert Hospital in Wisconsin for my UAE was great. The IR and nurses were totally on target. They successfully managed the pain.
It was a doable procedure with them. Hang in there Kee
Susan
December 21, 2009 at 3:43 pm
Kee, I’m so sorry to hear about your experience. Sad to say but it almost sounds like they had no clue with what they were doing. I hope that wasn’t the case. Hang in there, it will get better.
December 27, 2009 at 5:22 am
Thanks Ladies! I am finally feeling much better. I am finally off all of the narcs and on over the counter pain meds. Still have no appetite but that could also be due to my catching a horrible cold as well. Still very tired but it’s getting better.
My ears aren’t ringing today. Yeah!! Maybe my Hb/HCT is normal for the first time in over a decade. I still feel some fluttering & am wondering if that is normal. How long does it take these suckers to die ?
December 27, 2009 at 10:14 am
Kee,
The most shrinkage occurs in the first 6mths. It can continue to shrink for up to 1 year. Hang in there.
Hope it works for you.
Susan
January 5, 2010 at 12:43 pm
Having my own question mark. LOL. If it were not for the lower back pain , the occassional cramping & this wonderful site, wouldn’t even know the sucker was on. I want to shout out to the world about it but I guess I will just stick to posting it here. Thanks Ladies for all of your help & encouragement!
January 6, 2010 at 11:59 am
Hello, ladies,
I just had my UAE done on January 4th/2010I. There was no pain during procedure, I was slightly sedated but was aware of everything. The moment they took me out of operation room severe cramps started and I was sweating like crazy. Was on self-administered morphine over-night. Nurses were awesome. Now I am home and have some cramping but there is pain in lower abdomen and lower back. No poo yet – that could be a reason for lower pain. I am trying to stay away from all drugs. I also started to eat as before was horribly n,auseated.
I had several fibroids – the biggest being 11 cm! So I hope it’s not going to be a long painful experience…
January 11, 2010 at 10:09 pm
I had my UFE done in early June 2009, no problems except for pain the first few days.
Had two fairly light periods and NO PERIOD since September. I am really worried UFE has sent me into early-ish menopause, although I am 50. I was nowhere near menopause before the procedure.
Any suggestions/experience with this? I read above someone didn’t have a period for 7 months and then had two….
I am not sure I would have had this done if I had known it would have sent me into menopause…..
Experience? What do you think?
January 12, 2010 at 8:10 am
Hi Lori,
You did the right thing. You are 50 years old and menopause was at your doorstep any how. I had UAE done and was praying for menopause. Once you hit that fibriods will be completely done due to the loss of estrogen. I am turning 50 this month and would LOVE menopause.
Susan
January 13, 2010 at 12:03 am
Second week update – feeling much better energy wise. Heaviness in lower abdomen is gone. I do feel pressure and discomfort where the big fibroid is (on the right). Seems like it is here to stay for a while.
I was wondering – did anybody experience similar pains on a second week? Bloating?
January 30, 2010 at 9:03 am
Val,
I had pains my second week & am still having pains off & on while the smaller fibroids are dying off. The pain is from the tissue necrosis (dying) of the fibroids. I also have the bloating and gas. My friend who had this a few years ago said she had severe gas. UFE didn’t work for her but so far so good for me.
I still also can feel some slight pain on both sides of my groin when my period (?) is on. It’s not bad though. It’s mostly pressure related.
January 13, 2010 at 7:22 am
What a great site!
Well I don’t feel so alone now!
I was diagnosed with a fibroid over 3 years ago before starting IVF treatment. At the time it was very small but I have been told that the 3 attempts have probably enlarged the size so that it is roughly 11cm x 10cm x 11cm.
It is an external fibroid (thought to be pedunculated until my MRI scan ) and now known to be growing on a wide base on the upper right outside of my uterus.
I’ve always had heavy periods and laterly some clotting so it is difficult to judge how long this has had an effect on my cycle.
I am currently having 3 injections a month apart for help to shrink it down so that I can undergo an embolisation.
I’m 42 but still harbour th hope I might conceive ( slim chance I know!).
I just wanted to know firstly about side effects of the fibroid….I have had excrutiating headaches twice a month ( pre period & during ovulation) for about 4-5days at a time……no pain relief will remove them and they are like the headaches I used to get when under the IVF treatment. I am sure it is related but I keep geting told it isn’t! Anyone got the same side effects? Also I get night sweats just around ovulation….Ironically I feel best when I am having my period!
Also this is just about the only time my skin is calm & not affected like a spotty teenager!! I would love your imput.
PS I’m in the UK in Scotland
January 17, 2010 at 4:04 am
Karen, I had migraines for years until I became perimenopausal and began taking estradiol (a type of estrogen) – my migraines completely went away. Maybe you have migraines and not regular headaches…
January 18, 2010 at 6:17 am
Thanks Amy, After this weekend I am pretty sure they are.
I am about to have my second injection to shrink my fibroid but have noticed ( although it is not alot) that my period has now lasted 8 days. I wonder if this has anything to do with the injections.
I have had pretty regular periods around 5 days in length prior to this and regular in spacing 24-27 days.
January 23, 2010 at 8:50 pm
Hi – I have just been approved for a UFE, have finally gone to gyno for female issues. Of course informed I have fibroids and a hysterectomy was suggested first and second a UFE. Had the biopsy done and that was clear, now waiting on scheduling, etc. Wish the UFE doc was the gyno doctor but is a male instead. This is all so scary to me, having clotting agents placed into the body? And these fibroids – I am walking around now with a huge lower abdomen like a pregnant women (gross – I have never had this before), and it hurts a bit. I am so active daily, necessary I live on a daysail/charter boat – can’t lay in bed even if sick. So this back pain, abdomen pain, girth and bulk and rough mensas have got to go.
Any suggestions? comments? please? would love to hear them all.
thank you
January 30, 2010 at 8:52 am
Danielle,
I had my embolization on 12/16/09. The procedure for me was horrendous but I would still do it again. I would just choose a different doctor. My doctor & staff were wonderful but they don’t admit patients over night post procedure. I was told the pain would be like severe menstrual cramps. I thought ok. I have those anyway. Have had them since I was 12. I can do this. Well, I was wrong & so were they. My post procedure cramps were like LABOR PAINS! I have never hurt that badly in my life & I have a child. I called the doc and he had me double my pain meds and I was ok. If I had it all to do over again, I would have chosen a doc who would have admitted me for an overnight stay & placed me on a PCA pump.
With all that being said, I am glad I did it. Since 12/16, I have lost 3 inches off of my stomach. My pre-procedure uterus was at about the size of a 5 month pregnancy. My back pain is better. My anemia is better (my ears stopped ringing constantly). I also no longer have to know the location of every bathroom if I go somewhere. Before, I had a few minutes max before I would tinkle on myself once I had the urge to go. Now I can hold like a normal person if necessary. My period has come on twice & it was so light I actually had to question the doctor as to whether or not it was on. My period used to be on constantly. I didn’t mark the calender to see when it was coming on because it was ALWAYS on. I had to wear a tampon & 2 pads to try to help prevent accidents. Even then, I was needing to still change every 2-3 hours.
I actually went shopping a few weeks ago and automatically put two boxes of pads in the cart. I then happily realized I didn’t need them. One box will now last me like normal people! Even more cause a simple liner will do for now.
So talk to your physician. Make sure you know what your plan of care will be. Insist that you are admitted overnight.
Still with all the mishaps, I don’t regret having the procedure at all.
Good luck!
January 24, 2010 at 4:46 am
Danielle, have you had kids yet, do you want any? I was just impressed by another post where a woman had a myomectomy and they removed a large calcified fibroid from a previous emoblization… I just know that I would do anything to get them just removed rather than have them calcify over time. The size may go down, but I actually don’t know if they go away… It just seems that some women have the emboliztion and end up having the myomectomy eventually as well. Your health is the most important thing. Isn’t there some way you could take some extra time off? Make sure you read all the posts on here before you make a decision. In case you didnt’ see it, look above the comment box where it says “Older Comments”. And if you might want children at all, especially consider seeing a fertility specialist as they will be the best specialist to see – they won’t be pushing hysterectomies. Good luck.
February 4, 2010 at 3:09 am
I had my UFE done last Aug 09. Procedure went well and I was back at work after 2 weeks. Periods after that was a lot lighter than before. However, last October I had painful cramps on my 5th day and my Gyn said it’s normal because the fibroid is in the process of shrinking so he told me to take Naproxen whenever I get cramps, which I did.
But now I have a problem because my period started last Jan 13 and I haven’t stopped bleeding ever since. It’s not heavy more like spotting and I get cramps everyday. So now I am taking Naproxen once or 2 x a day. I will get an appointment with him by next week and ask what is going on. Is this still the case of the fibroid shrinking that’s why I get cramps and haven’t stopped bleeding? Hope I get an answer soon.
February 4, 2010 at 8:08 am
Hi Kit,
Your case sounds very interesting. Keepus posted on what
your doctor suggests.
Susan
February 13, 2010 at 2:21 am
I got a schedule for ultra sound and prescription to stop my bleeding.
February 10, 2010 at 8:36 pm
Hi,
I had my UFE in Dec of 2007 when I was 38 years old, after a nightmare of bleeding heavily for months at a time. It was very painful afterwards for about 10 days, but I did not get much of a period afterwards up until last week. Now over two years after my UFE, I have been bleeding heavily and clotting for about a week. I made an appointment with by Gyno and I am sure she is going to have me get another MRI.
I pray I will not need a hysterectomy now.
February 14, 2010 at 11:34 pm
Today is Valentines Day and I had my UFE last week on Feb. 8th. All I want to know is when I can start to work out? I feel great! The only problem has been the antibiotics that made me nauseated but I am done with them. I had the procedure Monday. The last thing I remember was watching Ellen in the “holding room” and the nurse saying “I am going to put this into your I.V. and it MAY make you a little sleepy”. As soon as it went in, she said “are you ready?” and I replied “as ready as I will EVER be”! Next thing I remember I was in my room, in serious pain, and as sleepy as I have ever been! They had to keep reminding me to use the pump but I was too sleepy to remember! Because of the nausea, they gave me medication that knocked me out. I didn’t get my catheter out until about 5:00AM the next day (Tuesday) because I could NOT wake up! At about 8:30AM I had to tell them to not give me anymore I.V. pain meds because they made me ill and the treatment for that made me sleepy and I KNEW I would be there until I could get out of bed and go to the bathroom (“We need to see urine before we can discharge you!”) So I found out what time I.R. made their rounds, sucked it up and got to the bathroom! (not before throwing up a little bit!) I was only able to eat a little chicken noodle soup late that second day at home and I slept most of the day.
I took one vicodin but it gave me a headache so I stuck with the 800mg Ibuprophen. I have not had any today and I do have to say I feel great (but I am milking it for all it it worth with my husband)!
I had the procedure at Harper Hospital in the Detroit Medical Center and the doctor was WONDERFUL! Her name is Dr. Danier. The staff was wonderful, caring and knowledgeable.
They are supposed to be calling me tomorrow to check up on me. I have been bleeding very mildly since Wednesday but it seems to be slowing down to a trickle. Even though they said the “bulk” symptoms won’t go away for a while, I do not have to go to the bathroom every hour like I did before and my back has not been sore.
The woman who I spoke with in the I.R. department leading up to my UFE had the procedure a few years ago and was very happy with her results and so far, so am I!! I will post again!
February 15, 2010 at 12:16 pm
Hang in there Julie!!!! Hope it gets better for you.
Susan