UFE & bulk symptoms - looking for help & honesty

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I had UFE on 21 December for two large fibroids (10cm and 8cm). My main complaint has always been bladder-related - I feel like I need to pee all the time.

Since the UFE - which my IR said would "cure" me - I've had a handful of days where I felt normal, but it always goes back to the bladder symptoms. I can't sleep through the night, run or enjoy life. My periods have not changed since the UFE.

I had an MRI one month after the UFE and they'd already shrunk 25%.

But I get mixed advice about how long it takes to see relief from bulk symptoms. I've heard 3 months, 5 months and up to a year.

Any honest feedback is greatly appreciated. I have a four-month scan set for last week of April.

I can't go on feeling like I need to pee all the time.

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  • Posted

    I had UAE in April 2015 for big fibroids (about size of 20 week pregnancy after Esmya). I had problems with constipation, needing to go to the loo all the time, feeling full, rib pain, sciatica, hip pain and 15 to 20 day periods. After about 4 weeks I noticed a difference in hip pain, constipation and urinary symptoms. Around 6 months I felt fluish and tired for a week and then there was noticeable shrinkage which has continued. My periods were terrible up until this month. So, it is not an instant result. I would say the bulk symptoms improve very gradually and some study I read said women are most satisfied at 18 months after UAE.
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  • Posted

    Hi Murnaloo... I was informed that the bulk issues would likely take closer to 6 months to resolve.  I have the same issue with feeling like I have to pee all the time, and then not being able to because one of the fibroids was pinching the neck of my bladder.  And bowle movements were difficult.  I found I needed to remove my tampon each time I peed and poo'd to help evacuate. 

    A lot probably depends on the size and exactly location of the fibroid. I think 6 months is average to reach a satisfactory result, but it could take less or more time.  That's probably not helpful smile  But be patient.

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    • Posted

      Hi Deanna,

      Thank you for the supportive message! I had my (almost) six-month scan yesterday. The doctor said my fibroids have shrunk 70%, which blew me away. I know they have shrunk a fair amount because I no longer can feel them by rubbing my abdomen. I have not had urinary retention since late January (UFE was done in December). I've had some days where I felt absolutely normal and I'd be so encouraged. But, then the feeling that I have to pee all the time comes back.

      The doctor said I was "cured" because the UFE was a tecnical success and I'm not having urinary retention any more. That is definitely a huge win, but I don't really consider myself cured when I still feel like I have to pee most of the time and am still getting up multiple times in the night. He said the fibroids would only shrink a very small amount more, if at all.

      I hope you are right and that it does take some of us a little longer than six months to see consistent relief from the bulk symptoms. Have your urinary symptoms kind of come and gone after UFE?

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    • Posted

      Hi Murnaloo... Sorry for the delay.  I've been on holiday (hooray).

      Actually, my symptoms have come and gone and come again. It's frustrating to think that I'm "cured" and then it comes back.  What I'm realizing is there is inflamation near the time of my "period".  I think as I cycle that my uterus and fibroids enlarge a bit, and 800mg twice a day of Ibuprofen really helps.  but I have to take it regularly during that time and not wait to feel like I can't go. I'm hoping they continue to shrink, where any inflamation doesn't have that impact.  But I've also noticed in the short time since my procedure that it's become more difficult to feel the fibroids thru my abdomin.  So that's incredibly hopeful for me!

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    • Posted

      Hi Deanna,

      Hope you had a good holiday!

      I'm sorry you are not "cured," either, although it is comforting to know I'm not alone. There have been many times when I wondered if my bladder problems were just in my head. I feel the doctors have never taken me serious. If that sounds jaded, it's b/c I've been having problems for six years.

      You are right --  the bladder issues seem worse before my period. There's also a few days, I think around ovulation, where I feel really bad, too. Other than that, I have good days and not good days.

      Can you take 800mg of ibuprofen at once? I only take 400mg, so maybe that's why it seems to provide no relief. Have you ever taken medicine for overactive bladder? I took Vesicare for a few years and it seemed to help, but gradually it wore off (I think as the fibroids grew larger).

      I've got an appointment next week with a gynecologist to see if there's anything else, short of hysterectomy, that can be done. I just don't have faith that the fibroid will shrink more or will shrink enough to make me feel back to normal. I'm warming to the idea of a hysterectomy, though. What worries me is that I don't know definitively that it is the fibroid causing the bladder problems. Has a doctor ever told you that was definitely your problem? I don't know what else it could be, though.

      That's great that you can no longer feel the fibroids in your abdomen. It's good to know they've shrunk considerably. Here's hoping they shrink even more!

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