Fourth day post op for UFE and need support :(

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Hi I am 37 years old I have been diagnosed with a 20 cm uterine fibroid and went for the UFE. I am on day four post-op and I'm still in pain and discomfort and have been taking my medications religiously as prescribed by the surgeon, using a heating pad and resting lots. The surgery wasn't so bad but the aftermath is about if work and I definitely would not call this a non invasive procedure as this takes a whole lot out of you. I just wanted to get some feedback from those who have had a large fibroid on what to expect over the next while on recovery. I feel as if my stomach and uterus has swollen bigger than pre op and wanted to know if this is common, should I worry, should I go to the GYN??? Is this part of recovery where it gets worse before it gets better?? And how much would it shrink and when would it start shrinking?? I know all body types are different and just wanted some feedback and will definitely update with progress!

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  • Posted

    Hi, I totally agree that this is not a non invasive treatment and they certainly underplay the recovery times. My largest fibroid was 6am, but I had numerous ones this size, womb equivalent to someone 5.5 months pregnant. I am on day 16, I had pain, nausea and vomiting for first 10 days with bad sweats. The pain and nausea eased 2 days ago, but the exhaustion I feel is still as bad. I am currently signed off for another week and am hoping this will improve by then. I go back for my first post operation scan on 27th June, I have been told this will give an indication as to if it has worked, but not to expect to feel any different for several month. I hope things improve for you soon xx
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  • Posted

    Ps my stomach and uterus felt very swollen, sore and tight for first 10 days, that has eased slightly now
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    • Posted

      Hi, thanks for sharing your experience. I also was vomitting and had to excuse myself from meeting with the surgeon post op before discharge to go to the bathroom to vomit and then again at home. It hit my more so when I got up and not laying down. The surgeon said that would happen from detoxing from narcotics, which I've never taken in my life. And when I got home I kept tossing and turning and sitting up and laying down and couldn't find a comfortable position. I couldn't even eat for days nor keep water or soup broth in my tummy. I kinda have an appetite now but I feel like I still can't eat because where is the food going?? My abdomen is so big. Last October they compared me to a 6-7 month pregnant lady but I feel like I'm at 8 months. I don't have kids so I wouldn't know what it feels like to be pregnant but if it's like this then it's not fun sad My first post op appointment is set up for four months from now with an MRI scan and nothing sooner. Doc said just contact us for anything out of the ordinary but not sure what out of the ordinary means sad I'll keep you posted!!
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  • Posted

    Completely agree that just b/c there's not a surgical cut doesn't mean it's not invasive!

    I had my UFE on 21 December 2015. I thought from that moment on the fibroids could only get smaller, so imagine how upset I was when my urinary retention got worse, not better, in the first week. My doctor calmed me down and explained that, yes, things get a bit swollen and can be unpredictable for the first 2-3 weeks. He seemed almost irritated by how often he had to tell me that the key to all this is patience.

    He was right. There is no magic moment when you wake up and feel vastly improved. It is baby steps and, unfortunately, the first few weeks are a rollercoaster. My advice is to take it as easy as possible for the first few weeks, but also, if you can, to start taking walks as soon as possible, even if they are just for 10-15 minutes. Several friends who'd had the procedure told me this and said they had no doubt it helped them speed up recovery. I was sceptical, but now I am a believer, as I started walking in the park on day 3 and I felt stronger every day.

    Other than that, my other advice is to lower your expectations. I don't mean that negatively, but rather, I think that by the time we have UFE, we've all suffered plenty and we just want to feel better NOW and the procedure is sold as somewhat of a miracle cure. Do not expect to feel greatly improved by week 2 or month 1 or month 3. Just know that, very gradually, you will feel better, but you won't even realise it's happening for a while when you think back to how you felt before you had UFE.

    For the record, I had two subserous fibroids (10 cm and 8 cm), with a 24-week uterus. The largest fibroid was pushing on my bladder. I had my six-month scan a few weeks ago and the doctor said that my largest fibroid shrank 70%. I have not had urinary retention since January, but, unfortunately, my other bladder problems have not resolved and I am now looking at other options. My periods did not change much either -- they are slightly less heavy, but I didn't really complain about my periods, only my bladder, problems. Of course, I'm disappointed that I'm not "cured," but by having dramatically smaller fibroids, I am hopefully a good candidate for a lapropscopic procedure, which I wasn't before. I will say that I do have some days when I feel normal (usually right after my period) and before UFE I could not say that.

    Hang in there, watch lots of bad telly, take progressively longer walks, be kind to yourself and try to be patient -- you will improve, I promise!

    Keep us posted on your progress! x

     

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    • Posted

      Murnaloo, did you decide on emolisation in the hope you could get a laproscopic hysterectomy? This is my decision. Open now, or embolisation & keyhole. As due to the size it would be unlikely laproscopic would be possible 12x13x7cm

      I am in two minds about embolisation, my main worry is after my MRI in May they said for such a big fibroid they would have expected to see larger arteries feeding it, so gave me a 50/50 chance of successful reduction. It seemed a bit of a gamble when I know i'll probably end up with a hysterectomy any way. I also worried about them emolising the ovaries as well by mistake which seemingly can happen. Who'd be a woman!

       

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    • Posted

      Haha! I agree -- there are days when I think men have it so much easier. Every time I complain about fibroids, periods, discharge, you name it, my husband says, "Reason #[insert random number here] I'm glad I'm not a woman!"

      I did the UFE hoping that would be the end of the story and no hysterectomy would be needed. I just needed the one fibroid to shrink enough to where it wasn't pushing on my bladder. That was apparently too much to wish for, though.

      I guess in the back of my mind I knew that a hysterectomy was quite possible. I've had laproscopic surgery in the past (unrelated to fibroids) and the recovery was not bad -- definitely not down and out for the eight weeks we'd be with open surgery.

      Like you, I was worried about my ovaries being affected by the UFE. A main reason for doing UFE was b/c I didn't want to be put into menapause yet (I'm 46). I REFUSE to take HRT. Eventually, though, I decided I was so miserable that I'd chance it. I wouldn't worry so much about the doctor mistakenly embolising your ovaries (assuming you have a doctor you trust, of course!).

      I have an appointment on Thursday with a gynecologist to discuss options. I can let you know if she says the smaller fibroids have given me more options (e.g. laproscopy) than I would have had without UFE.

       

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  • Posted

    Sorry to hear you are feeling awful. A year an a half ago when I read up about embolisation it was what you are now going through that made me delay my decision. As in my home & business, it all stops without me! I hope over the next few weeks you see a vast improvement. x
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  • Posted

    It's definitely not an easy recovery, nausea came back this pm out of the blue, eased again now after I was sick. No pain apart from in groin area where they went and leg and back on that aches on and off. I have definitely decided not to let them do the other half, I will see how much what they have done shrinks and then may look to have a hysterectomy privately if they will do it. Keep getting better ladies x
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