Will the pain go soon? Second attempt at surgery!

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I had my Uterine Embolization surgery on Saturday, and the Radiologist ran out of the particles/substance that he uses to block the arteries. I was in theatre for approx. 4 hours and he was unable to complete the procedure.

I am in severe pain on occasions, and have been told that I might have to have the procedure done again to finish off the other side of my uterus, which now measures in total around 26cm in length with numerous fibroids growing in and outside. I can't believe how crazily fast these fibroids have grown in such a short period of time.

Has anyone else had this surgery carried out more then once and how soon after the first time did they have it done?

And other then Oral Morphine, what pain relief is everyone on, or has worked most effectively for you? Morphine is having too many bad side effects, but at least it gets rid of the pain, nothing else seems to work.

I just want to know how long I will be bed bound for, I'm only 39, and it's so disheartening as I'm usually really active. I'm having to deal with the pain of the fibroids squashing all of my internal organs, which is adding to the discomfort.

Just good now to talk to others who are in the same boat, because I can't describe it to anyone else.

Thanks.

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  • Posted

    Sorry to hear.  I had a 21cm uterus with 10+ fibroids from 10cm large in and around my uterus.  I was also in theater for nearly 4 hours because the equipment overheated halfway through my procedure but luckily they were able to finish.  I went back to work after 2 weeks but it took me much longer than that to get fully back to normal.  I was in bed for only about 2-3 days post procedure but I was really active prior to my procedure so got back on my feet rather quickly.  I was in a lot of pain the night of the procedure and days 2-3.

    My procedure was in November and I'm just now starting to run again (winter didn't help) but really it's because I would still have moments of pain and heavy discharge following any exercise. 

    I can't give you any advice for how soon to have the 2nd surgery but I wouldn't wait full time for a 2nd recovery and then throw myself back into it all over again.  I'd try to have it as soon as the doctor said it was safe to do so.  That way, the necrosis of your fibroids on both sides can happen simultaneously and hopefully the fibroids on the side that was embolized won't have a chance to recruit new arteries and begin regrowing. 

    Now that I'm out of the worse parts, I feel great and only wish I'd done it sooner!

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    • Posted

      Thank you for your experience. Since posting my comment, I am slowly starting to feel less fatigued, and I already have more energy.

      I'm glad to hear that you too are active again, and feeling great.

      I am very hopeful that this first round of UAE will shrink my fibroids enough for me to have my Hysterectomy safely without a huge amount of blood loss, as they were originally so huge, with so many arteries running to them. So if possible I would like to get back back to full fitness, and wait for my turn on the Hysterectomy waiting list, as I fear they will only grow back again.

      I hope you continue to feel well, and your symptoms are now under control.

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    • Posted

      Sorry to hear this. I cannot understand how the IR didnt have enough particles! Unbelievable! How big were your fibroids & where. I am thinking of a similar route mine is singular & somewhere between 13cm & 16cm

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    • Posted

      I know it's crazy, and he had especially ordered in more of the particles for my op, because he knew how large and how vast they were. This is probably why the procedure took so long, but it's all in the past now, and I can feel that it's working, so that's the main thing.

      My two main fibroids measured 16cm in diameter and another of 14cm and numerous others surrounding them.

      I was in a lot of pain for too long, but I'm pleased I went ahead with this.

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    • Posted

      Hi yes, mine have numerous blood sources, hence why it took so long to block all of the arteries, and he ran out of the particles.

      This can also mean that you can become very anaemic, because the fibroids are draining your blood levels.

      Infection or necrosis is a possibility, but I think it is fairly rare.

      All the best with whatever decision you make, but the procedure on its own is relatively painless, it's more the tiredness that has hit me the most, so be prepared for the lethargy you might have, which has been difficult as I'm generally a very active person.

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  • Posted

    I wonder if you shoud consider high intensity focused ultra sound. The only thing is that it is not covered by insurance. I did find a place in florida that has a grant right now that will pay for a portion of the ultrasound. Cost is about $8700 if you could afford that it might be worth a shot. There is no radiation involved. If I had many of them, I think that is what I would try. 
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