UFE experience with larger fibroids

Posted , 8 users are following.

Hi ladies,

I've been reading your stories for a while and I want to thank you because you've all been super helpful.

I'm scheduled for UFE in about a month and I'm extremely nervous after reading some of your experiences.

I'm 36 years old, no children (still not sure) and I have two fibroids, one about 9cm and another 7cm. My issue is overall pain, pressure and discomfort. The fibroids are pressing on both my bladder and colon so as you can imagine, I'm having lots of fun.

I'm wondering if any of you other ladies with a similar situation have had UFE and how successful it was in shrinking your fibroids and relieving your symptoms? Also, how painful was recovery and how long did it take for you to feel better?

Thanks again for all of your help. It helps to know I'm not alone in all this.

Jess

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  • Posted

    Hi Jess,

    First off, best of luck with the procedure!

    I had the UFE procedure done many years after having my kids. I had similar pain or discomfort like you plus heavy bleeding during my periods and anemic because of it. The reason I chose this procedure was the non invasive side of it and that I was over 50. I exercise daily and my largest fibroid of 13 cm was causing pain in my stomach. It looked like a gremlin was about to make its way out every time I did a sit-up. Due to my Mom having had fibroids even after menopause, I decided to do something about mine prior to menopause even though I've read fibroids decrease in size after menopause. I was miserable and could not wait any longer.

    I will say that the procedure did what I had hoped for...shrunk my fibroids, lessened the bleeding, made the anemia go away, and helped me to lead a better life. The pain, once home, for me was bearable with only the help of Ibuprofen for 5 days and then down to an occasional Ibuprofen for a week. I went for a 10 minute walk the following day and then as the week progressed managed to walk for longer periods of time. It helped with the cramping and my mindset. I will state one other thing that helped me aside from the support of family and friends, a guided meditation CD (or app) two weeks prior to the procedure every day. I realize that not everyone can get into meditation so easily, but truly helped to relax me and get me through each day. My only difficulty was that I was vomiting in the hospital after the procedure because (A) nurses did not tell me that I needed to eat food with the dose of anti nausea pill; and (B) the meds they used for the procedure nauseated me and a nurse pushed the pain button for me because apparently my heart beat was going higher.

    I had a friend who had the UFE done as well, and hers was successful in shrinking her fibroids. She did attempt a myomectomy first and believe that more fibroids grew over x amount of years, so did the UFE procedure. No kids naturally for her (she wanted one).

    I hope this helps somewhat.

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    • Posted

      Cindy,

      Thank you so much for your reply! Your reply helps set my mind at ease for sure. The doctor suggested that UFE might only help to reduce mine about 50% and its good to know that this might be enough to make me feel normal again! Fibroids run in my family too and my mom still has hers even though she's gone through menopause so mine arent going away anytime soon. Also, its good to know that the pain during recovery was at least bearable. 😃 I like to think I have a decent pain tolerance but some stories have been making me 2nd guess my decision. Thank you again!

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  • Posted

    Hi Jess, I had mine about 3 months ago this Saturday. I'll be going for my 1st MRI since the procedure. I have shared my experience in this forum. I must say the process of fibroids shrinking ie days and weeks after the procedure seems different for everyone sister. I feel so much better after several dramatic episodes of shrinking fibroids. But I have gathered the info below from reading people's experiences and maybe others can add to this observations :

    1. It seems to depend on where in the uterus the fibroids are located. This seems to determine if you will expel it or it will dissolve through the body own mechanism
    2. For most ladies there's a discharge and could become smelly seems to start happening at around week 4 going forward
    3. It appears if a fibroid is about to be expelled, one experiences intense abdominal pain that could last up to days, if a dead fibroid is expelled, the smell stops too.
    4. It is said women who have had vaginal deliveries expel the fibroids easiest if the fibroids are being expelled.
    5. Some ladies have experienced heavy bleeding others have had lighter periods soon after the procedure.
    6. The discharge seems to continue forever for some ladies. The discharge is usually brownish very watery.
    7. I also read that its possible for fibroids to grow again after a few years after the procedure, I was so surprised by this.

    Wishing you all the best Jess.

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    • Posted

      You're a life saver for putting all of this information together! I've read so much that it all becomes a blur. I'll have to go back and find the stories you've shared.

      I'm not sure exactly where mine are though I'm pretty sure they're intramural. The continued (possibly smelly) discharge freaks me out a bit but I guess it's a small price to pay and better than the alternative recovery of a myomectomy. Good luck with your first MRI after UFE! I hope you continue to heal!

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    • Posted

      Thank you Jess. I want to help sisters to fight alongside this fibroid burden. My hope and knowledge was increased tremendously just by reading other ladies stories and demystified a lot of mysteries after UFE. I will forever be grateful.

      You could search topic "Fibroid expelled" in this website for part of my story.

      I believe when a fibroid is submucusol it gets expelled and before that the smelly discharge comes with it, though my friends told me they never smelled anything but I think it would linger after use of toilet or when standing up after sitting for long..but once I expelled the fibroid the smell stopped.

      I also have a subserosal about 5cm one and I see that one is dissolving through some little whitish discharge very little if any smell about once a day. I know this one will not be expelled dramatically like the sub mucosal ones, but looks like it will dissolve thru that discharge way. Will see for how long.

      Sorry for long talk.

      I feel energetic and restored after soo many years of fibroid turmoil. Praying this remains so.

      Thank you, all the best in your procedure🌸

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  • Posted

    Hi Jess

    Just wanted to add my input. I am now approaching 50. I had 3 very large fibroids and was told the procedure might not work for me as they were so large. I had heavy bleeding as well. I was keen to try out the UFE as although I have children I really did not to have a hysterectomy. Anyway had it done 2 years ago at St Marys in Paddington. For me the pain afterwards was really bad (and I have a high threshold for pain) for about 2 weeks and then it eased off. The heavy bleeding stopped immediately (although you do get light bleeding after the procedure). I am also suffering less headaches and urinary infections - which were constant before as the fibroids were pressing on my bladder. I would highly recommend the surgery. It took 2 years for me to lose the 6 month pregnant look. I now look approx 4 months pregnant which I can deal with. I might go down the hysterectomy route later if I have to, but I am so glad that I had the UFE done as it solved all the other issues. All I am left with now is some bulk, which although from a vanity point of view is not great when you do work out and still look 'fat', but I feel lighter, less moody, have very light periods so have more energy. Good luck with your operation. In my opinion you have nothing to lose.

    Fudgecookie

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    • Posted

      Thank you for sharing your story. I'm happy to hear it worked for you and even though it was painful it was worth it. I've read that the bigger they are the more painful recover can sometime be. I'm often in pain because of these stupid things anyway so like you said, what do I have to lose. The radiologist also told me that if it doesnt work I can still go down the myomectomy route after. Though i am trying to avoid that.

      If you dont mind me asking, was the pregnant look a result of the UFE or did you have it before? My fibroids are definitely making all if my pants fit tight and uncomfortably so I'm hoping it'll help with that but I realize that it might take months. Thanks again!

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  • Posted

    Jess

    I had the 6 month pregnant look because of the fibroids which I have had for many years. I was told to go by the 'watchful waiting' approach and as I wasnt complaining that much, they just grew bigger and bigger until I got to a point where I couldnt go via the keyhole surgery route. I was secretly hoping to have a flatish stomach about 6 months after the procedure but that was unrealistic. So they have shrunk considerably because of the UFE treatment considering the size and I am hoping when I hit menopause I will get a little more shrinkage. Like I said all the other symptoms that I had have disappeared so for that I (and my poor husband) are thankful!!

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  • Posted

    yeah same for me too i was avoid the mymectomy route so going for the UFE simply because it is less invasive as well. i think everyone body is different and may react differently but i am hoping this will be the end of mine too cos i have 4 and they are all intramural. lets brace ourselves at least it will be better than to live with this useless things that drains energy and feeds form the blood.

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    • Posted

      Hi Jess,

      i haven't been give a date yet but am hopeful that it will work anything is better than having the mymectomy and having to deal with CS for the rest of your childbirths

      my dear lets just be positive it will work out

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  • Posted

    Dear Jess and Jay, wish you all the best in your procedure. Remember that the position of the fibroids may largely determine your experience after UFE,

    We'll be here to walk the journey with you both.

    🌸

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  • Posted

    hi Jess

    you can read about my UFE below on a thread called " UFE (fibroid embolisation) in 4 days".

    I am 4 and a half weeks postop. MRI shows the fibroids are dead. I had the lightest of periods! I am starting to have the foul smell some women mention here and I have expelled a tiny fragment of a broken fibroid. Apart from that all is well. I just have to be patient about shrinkage. Best of luck.

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