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Myomectomy or hysterectomy after failed UAE? Myomectomy or hysterectomy after failed UAE?

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  #1  
Unread 05-29-2014, 05:20 PM
Myomectomy or hysterectomy after failed UAE?

Hi everyone!
I've been a lurker for a bit and am now seeking input and advice from anyone who has been in a similar situation and might be able to help me make this really tough decision .
I'm 42 with one amazing son. We don't plan on having any more children.

I had UAE in February of 2012 for a good sized fibroid (about 10 cm I think at that time) that was living on the outside of my uterus. I was passing some large clots and had been having alot of back pain (which turned out to be a herniated disk requiring another surgery).

Anyway, at my last PAP in September, my doctor didn't like the way my uterus felt, so had me get an u/s just to be sure there wasn't anything else to be concerned about. As it turns out, the fibroid has grown (rather than shrunk as UAE should do ... 30-70% is what they say) and was too big to measure via u/s.

I was then referred to have an MRI where they were able to get a better idea of it's size. It's about 14x15x11 cm and on the outside of my uterus so it's causing some pelvic congestion.
I've recently been noticing that I feel full/bloated much more easily (especially around my period), and it can feel "weird" to bend over at the waist.

Honestly, I'd probably just let it keep doing its thing if the ob/gyn surgeon hadn't mentioned sarcoma. .
She said that the odds have gone from 1/1000 to 1/350 that my fibroid might be sarcomatous given that it didn't respond to UAE.
So, my choices are: 1) do nothing 2) myomectomy 3) hysterectomy.

The problem w/ myomectomy is that my fibroid is so large that she would have to go in through my c-section scar to get it out, healing time is 6-8 weeks, fibroids can grow back, and there's a lot more bleeding. BUT, I'd get to keep my uterus as structural/hormonal/blood supply for stuff down there.

She said that there's a 75% chance she'd be able to do a vaginal, laparoscopic hysterectomy on me though, so a much better recovery time, no more fibroids, and no more periods. The scary part for me w/ hysterectomy is the fear of incontinence, my ovaries never resuming their function, and the emotional repercussions of all that a hysterectomy entails.

My mom had a giant fibroid in her 40s and got a hysterectomy and was incontinent for the rest of her life (she passed away three years ago), so that scares me alot.

My hysterectomy or myomectomy (I can still choose either) is scheduled for 7/10 and I just received my 1st Lupron shot a couple of weeks ago to try to shrink the fibroid before surgery.

Any input, experience, advice would be appreciated so much.
Thanks in advance!
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  #2  
Unread 05-29-2014, 08:03 PM
Re: Myomectomy or hysterectomy after failed UAE?

I had a TVH and no bladder probs. I did fine hysts have come along way, i started doing Kegels ASAP, feel strong in that area and healing well. My ovary kicked right in about a couple weeks after surgery, am in 40's. so wonderful not to have awful cycles My uterus was full of fibroids and adeno.
  #3  
Unread 05-30-2014, 06:34 AM
Re: Myomectomy or hysterectomy after failed UAE?

Just a thought...have you contacted your Radioliogist?
Mine told me to call if any issues or problems came up. Perhaps it was not properly killed off the first time.
But it can't hurt to bounce it off of him/her and see what they think. It might help in your decision process as well.
Sorry to hear your mom had such a hard time with incontinence. It certainly would make me leery as it seems female problems do have a genetic component.
Are they able to biopsy that fibroid? I know they say some can't be but maybe yours can.
Hope you find a comfortable resolution to the issues you're having.
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  #4  
Unread 05-30-2014, 07:59 AM
Re: Myomectomy or hysterectomy after failed UAE?

Might also ask why your mom had incontinenece issues, is it something genetic ? I've been fine. I think it's a big worry. Ask Dr. if while in there, if any additional repairs are needed. Thats what I did. And she asked me some questions, did and exam and said no worries.
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