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My complex recovery from uterine artery / fibroid embolization My complex recovery from uterine artery / fibroid embolization

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Unread 08-23-2012, 06:59 PM
My complex recovery from uterine artery / fibroid embolization

I am 11 days out from a UAE and while not being a big forum person wanted to post my experiences here for a few reasons:
1) Hystersisters was a nice source of information when I was considering UAE
2) There is a, in my opinion, too little information on women's experiences with UAE (and I do not count those paid for by people who make $$ from the procedure)
3) My experience to date has been unlike any I have read.

I hope it helps someone considering this procedure.

My fibroid:
Was discovered on a routine pelvic exam 3 years ago (summer 2009). Doc had it imaged and it was fairly large (~6cm) but was not affecting me so I let it go. In Dec 2011, doc said it was getting "quite big" and recommended I "get it out of there". But I was about to start a new job and lose my health insurance so I had no options for care. In February, I awoke several nights needing to pee but ... could not pee. I was all blocked up. If I waited for a few hours, I could get a trickle and then a stream but it was alarming. I was between health plans, assumed it was the fibroid and waited till my new plan started in March to be seen. New doctor felt it was fibroid and referred me for imagine which confirmed two intramural (one large, one medium) fibroids, approx 6 cm around for one and over 11 cm for the other. I was referred to an ob/gyn. He said get a hysterectomy and that a myomectomy made no sense. I got a second opinion from an ob/gyn, she said the same thing but added, "Well you could get a uterine artery embolization". Since doc #1 had told me my fibroid was too large, I pressed and she said it was unlikely to be a problem and referred me to radiology who got an MRI confirming I am eligible.
My procedure:
I scheduled it for when my son was with grandparents as I am a single parent and could not imagine recovering and parenting solo. Went to hospital day of procedure, got IV antibiotics and some anti nausea meds. The only hiccup was getting a urinary catheter, 5 people tried and all failed. Later I met the doc who showed me my MRI which showed how distorted my urethra was and why a catheter placement might be tricky. All those times I could not pee, I kept telling myself if it got very bad, I could just got in an get a catheter! Anyway, I signed consents, got wheeled into a cool room with lots of x rays on the ceiling. Despite conscious sedation, I remember the whole thing which was painless. The doc at one point asked for more and larger particles for my left side and then we were done and I was back in the recovery room.
Post op:
I had very little pain. I wondered if the procedure had worked. I have terrible menstrual pains on a regular basis (6 or 7 on a 10 point scale). My pain after this procedure was more like a 2. I am not sure why. I had a bit of trouble sleeping because hospitals are surreal but practically bumped into the doc the next morning when I was up and washing hands. He seemed a bit surprised to see me up and about. All was well, except for a rash likely due to a drug allergy, and I was released home, yay! Except that is when things got really rough...
Post-op at home:
At home I started to get a low grade fever and my stomach had mild, constipated pain. I ate a little rice, took a stool softener and went to bed. I awoke at 4am burning up with fever and that fever persisted all day. When it hit 101.5 I took Tylenol so I would not reach the threshhold for going back in. I have had H1N1, a c-section, and all sorts of illness in my years but I have never, ever felt so sick and weak. By early the next morning my partner was worried enough to call a nurse hotline who directed us to urgent care. At urgent care, they took my vitals and some blood tests and sent me home. By this point my constipation had turned to diarrhea, perhaps due to antibiotics and I struggled each time I had to get up and go. I was so low energy. The 4th and 5th days after the procedure had the same fever pattern: low (99.6) in the morning peaking in early evening (101.5) with lots of chills and sweats. The next day (post op day 6), the chills stopped, the general horrible feeling relented and only fever and fatigue remained. I had eaten nothing since the night of my discharge but had no appetite whatsover. Post op days 7 and 8 were similar but I was able to eat a bit (a few crackers, part of an apple, etc.) Post op day 9 I saw primary care doc because this seemed so different than what is described about UAE. She was concerned but after consulting with the experts decided this is "on the bell curve , albeit the tail end" of recovery. She sent me home telling me it would get slowly better but to come back if worse. Post op day 10 my fever broke and appetite really returned. Still I could get up and do things for 10 minutes and then find myself back in bed. Post-op day ten I spent 3 hours at work and had a bit less fatigue.
Other details:
I am allergic to NSAIDS so this may explain my slow recovery
Even though walking around the block is a challenge, I was running 2+ miles per day pre-op
I started to take an herbal anti-inflammatory called Zyflamend on day 10, unknown if helpful, but day 11 is the least painful by far
Other pain included a lot of gas and GI pain, relieved by defecation or farting. Also general irritation in the pelvic area, like a swollen basketball all around. This is improving on day 11.
It is too soon to say if UAE will work for me but I feel that this procedure is perhaps inappropriately billed as a quick recovery. When I felt sicker than post c-section, I began to wonder if something was wrong. My doctors (both the Int Radiologist and my PCP) were wonderful and reassuring but not being able to find the kind of description of my procedure was scary. Therefore I am putting this out there. However, if you are having an unusual recovery from UAE, it is much better to be safe than sorry and to get it checked out. Still recovery can be slow. I feel like a vampire vacuumed out my energy and is only slowly giving it back. This is not the sort of fatigue that makes me want to sleep but rather the one where every step feels like walking at elevation and where ten mins out of bed is countered by 20 back in bed. I hope others can be assured that speedy recoveries are not always the case with UAE and for me, I am certain I will not be back to baseline until two weeks at the soonest, likely later. That makes the calculation of UAE vs hysterectomy quite a bit different, especially since I may still need a hysterectomy at a later date. I had my mom visit post-op "just in case". I am so glad I did. I really needed the help!
A lot of people choose UAE for an easy recovery and do not expect to need someone at home to help them. This is understandable given how this is how the procedure is billed. However, I was a fit person with a "textbook" procedure who had a rough recovery, needed to miss more work than anticipated and relied on help for everything in the immediate post op week. Please be aware this can happen as you plan for your procedure.

I'll try to update this in a few weeks and also am happy to answer any questions about the experience from women considering UAE.

Good luck with whatever you choose!
Unread 08-24-2012, 06:21 AM
Re: My complex recovery from uterine artery / fibroid embolization

Hi Sincerelyseattle- thank you for that most interesting post. I have spoken to someone who opted for UAE , underwent the procedure and ended up still having a hyster. Her advise to me was skip the UAE and go straight for hyster. I truly hope this fixes your problems once these recovery issues settle down.
Unread 08-24-2012, 11:06 AM
Re: My complex recovery from uterine artery / fibroid embolization

Henrietta: I hate to admit it but if I could do it all over again, I would probably just opt for the hysterectomy. I hope that I feel differently in a few months (bulk symptoms take time to disappear after UAE) but right now that is how I feel so I think you are wise. I'd be a third through my recovery and my symptoms (namely urinary blockage) would not still be there and would never come back! I wish you the best of luck and a speedy recovery with whatever you choose.
Unread 08-24-2012, 12:02 PM
Re: My complex recovery from uterine artery / fibroid embolization

Thank you for your story, it is very interesting to hear about your experience. I hope, and will be interested to find out, that you get enough shrinkage to relieve your symptoms. A friend of mine had UAE about seven years ago, and did get enough shrinkage to reduce all her bulk symptoms. She did have to have another one last year, but that was also successful for her and should get her through to menopause. She is committed to and happy about keeping her body parts intact, so it's been worth it for her. Her recoveries did not sound nearly as tough as yours, but not insignificant either... I think it took her about 10 days to feel better both times, but she felt that was better than needing six weeks to recover in her circumstances. I really would have thought about doing it if my doctor had mentioned it and hadn't said to just watch and wait a year ago... which I just accepted as I had no symptoms and didn't do any further research into what could happen then. Now I'm afraid everything is too big for it to be successful, and having one definitive surgery seems to make more sense. But it is tough to face the risks and long recovery! At least you still have other options, should they be necessary. And hopefully you have gotten through the worst and will feel the benefits of your procedure soon!
Unread 09-04-2012, 11:59 AM
Re: My complex recovery from uterine artery / fibroid embolization

Quick update: I am three weeks out and finally feel back to normal in terms of energy. Still unclear if the procedure was enough to solve my urinary issues but hopefully it will in time. The sexual and hormonal impact of a hysterectomy gives me pause (also the increase in heart disease, impact on bone health,etc.) so I am still hopeful UAE may be beneficial in that regard!
Unread 10-23-2012, 11:14 PM
Re: My complex recovery from uterine artery / fibroid embolization

Thanks for sharing your experience, Sincerelyseattl!

I had UAE/UFE on October 4th. I also am experiencing what isn't typical after the procedure.

For a little background, I have a long history of heavy bleeding and cramps that only became worse when I hit my forties. I also have a history of having too many periods -- sometimes I had them twice per month. This had been happening since I was a teenager and I never got much help from physicians.

In my mid-forties, I became severely anemic due to excessive bleeding and the 800 milligrams of Motrin that I took during my cycles stopped working effectively to alleviate the pain. I couldn't travel anywhere because my periods had become so unpredictable flow wise. My whole life was planned around my cycle and every month, I had to take off at least three days due to my cycle.

My OBGYN said that I had fibroids and that I had a lot of them. I was offered the option of a hysterectomy -- because of where the fibroid were located and the size, the surgery would have been invasive. That scared me plus the prospect of major surgery for a menstrual problem seemed too severe in my mind.

I was offered the option of Uterine Fibroid Embolization by another Dr. I did research and read almost universal rave reviews by women who had the procedure. I heard quotes like "I was back to work in three days," "I experienced no pain after the procedure," "I've had very little bleeding," etc. It sounded too good to be true.

To make a long story short, I had the procedure and have experience pain every single day since. I had pain on the operating table toward the end the procedure which the Dr. said was normal. The pain immediately after the procedure was excruciating. I will say that I was provided with a pump with morphine -- that helped get me through it. I stayed in the hospital overnight -- had extreme nausea.

The pain for the first week post-procedure was terrible -- I took Motrin (600 milligrams) four times a day to control it. I couldn't sleep or get comfortable anywhere because of the pain. I finally checked out what women who had hysterectomies did to make themselves comfortable in bed -- I followed the advice that I saw and put pillows under my knees and around my sides -- that helped. I was told that the pain would only last for five days by the doctor. I'm glad that I took two weeks off from work rather than going back after a week. Today is the first day that I haven't had to take the Motrin - after 19 days. I'm still on a reduced schedule -- yesterday was my first day and half way through the day, I had a lot of pain.

I am still bleeding. It isn't heavy, but the bleeding has been non stop since the procedure. I had about 14 days of what I'd call "normal" period bleeding -- moderate bleeding.

I went to the OBGYN to get checked out. He said that what I was going through was normal due to the fibroids dying off and that it would probably be months before I feel the results. He did say after examining me that my uterus had shrunk by an incredible amount and that my fibroid also had shrunk by an amazing amount. That's a possible. And I notice that my stomach which poked out like I was pregnant is now relatively flat.

But I still don't feel 100%.

I guess the moral of the story for me personally is that everyone's experience differs. Some people may have a completely positive experience with a procedure, some may not. I don't know what to think in my case. While I am glad about the reduction in size of my uterus and fibroids, that pain is present and the bleeding continues. I wonder if I made a mistake and should have had a hysterectomy instead.

I don't want to steer anyone from choosing UFE. According to studies, most have a positive experience. But it's important for people to know that one size doesn't fit all when it comes to treatment.
Unread 11-09-2012, 02:28 PM
Re: My complex recovery from uterine artery / fibroid embolization

Thanks for showing the other side. I don't know if UFE and UAE are the same things, I feel so uneducated right now. I'm having the UFE on Monday, and I'm getting really scared. I live alone and don't have any help, so now I'm wondering if I'll be okay. I have a dog and cat to take care of and was assured that I wouldn't have any trouble walking the dog after the surgery. I feel very unprepared, but reading your experience is helpful.
Unread 11-10-2012, 02:08 AM
Re: My complex recovery from uterine artery / fibroid embolization

Hi Ksgriffin!

UAE and UFE are the same procedure. I wish you all of the best on Monday. It's OK to be nervous. Believe me, I was a bundle of nerves before my procedure -- but I have to admit, I am a naturally nervous person. My bleeding and pain problems probably amplified that.

It's now been exactly a month after my procedure. I didn't recover as fast as I had expected, but I am happy to report that I finally started feeling like myself about a week ago. I saw my OB-GYN a few days ago and he is pleased by the results of my surgery. My fibroids have continued to shrink and my uterus is much smaller now. I'm not having pain anymore and the bleeding did stop. And my energy is 100% back -- it's better than before. People have been telling me that I look positively glowing now -- kind of funny.

In my previous post, I was a bit down because I didn't feel like I was healing fast enough. I had been going through this "war" with my periods and pain for decades and I had reached the end of my rope. When the problems didn't resolve as fast as I had wanted, I admit, it made me cranky and upset. But after a few conversations with my doctor, he reassured me that I was healing at the pace appropriate for my body. Everyone's situation is different. A friend of mine had UFE and she was feeling tip top a week after the procedure. She didn't experience any of the pain and bleeding that I went through.

Keep those positive thoughts going. I'll keep my fingers crossed that you get the relief that you are seeking. I'll try to keep posting about my progress. You should be able to take care of yourself and your dogs post-procedure. Even with the post-procedure pain, bleeding and fatigue, I was able to make it through the day, take care of my dog, and do things for myself. I'd say, definitely take it easy for the first two weeks afterwards. And definitely take your pain meds exactly as prescribed to keep any cramps at bay. That really helps and will allow you to do whatever things you need to during the day.

I will say that once I got in constant contact with my OB-GYN and he addressed my concerns/worries, I allowed myself time to heal.

Good luck!!!
Unread 11-11-2012, 11:45 AM
Re: My complex recovery from uterine artery / fibroid embolization

Thanks for the explanation. My OB/GYN actually has had nothing to do with this whole thing. She wanted me to do a hysterectomy, I'm the one who mentioned the UFE. LOL I haven't met the Radiologist doing the surgery but I did have a long talk with his PA on Friday, and I feel a bit better. I'm not the world's best "healer" so I am nervous about this. They have prescribed MAJOR pain medication since I am a bad healer and Ibuprofen is like popping a tic tac to me. I told them that I'd just rather sleep through the recovery as much as possible. I can't take Vicodin so they are going to give me low dose Oxycodone for pain, that should help. I just got nervous reading this thread since I've been known to not heal well after surgery. Hopefully, I'll be one of the lucky ones. Thanks for your response.
Unread 01-31-2013, 12:10 AM
Re: My complex recovery from uterine artery / fibroid embolization

I wanted to offer an update. Doc noted on my last exam (for unrelated reason) fibroid seemed very large and she wanted me to get it imaged since she felt it had not shrunk at all. I was skeptical since my bladder symptoms have been so much better since the UAE but she was right, it is bigger. Uggh, not sure what I will do, if anything, but wanted to let others know who are considering this. It may have slowed things down but it was not much of a solution for my large fibroids. Somehow I was sure all that fever was caused by a dying fibroid, bummer!

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