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  • Hysterectomy advice (uterine fibroids)

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    Old 03-17-2015, 07:52 PM   #16
    lilyat
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    Re: Hysterectomy advice (uterine fibroids)

    Look into uterine fibroid embolization which is done by an interventional radiologist and there is a newer procedure called guided focused ultrasound.

     
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    Old 03-18-2015, 03:50 AM   #17
    sweetpotato13
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    Re: Hysterectomy advice (uterine fibroids)

    I tried to wait it out, went for my sonogram every six months, and unfortunately in one six month period my fibroid grew quite a lot (19 cm) and I needed it removed by abdominal hysterectomy. For me, hysterectomy was the answer since I was losing a lot of blood. Wishing you the best!

     
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    Old 03-18-2015, 05:53 AM   #18
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    Re: Hysterectomy advice (uterine fibroids)

    Quote:
    Originally Posted by thobuon View Post
    I am also looking into second opinions from fertility GYN, not because she is going to have children but because they may know how to remove her fibroids without taking the ovaries.
    Did you mean to say "...because they may know how to remove her fibroids without taking the uterus?" Although fibroids can grow outside the uterus, I have not heard of it being necessary to remove ovaries because of the fibroids.

    Seeing a fertility gyn would seem to be a reasonable course of action to preserve her uterus and ovaries and their many non-reproductive functions. I wish I had thought to go that route.

    Best of luck in getting restorative treatment!

     
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    Old 03-24-2015, 03:49 PM   #19
    thobuon
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    Re: Hysterectomy advice (uterine fibroids)

    Actually, I only thought about fertility GYN because they may remove her fibroids but keep her ovaries.

    However, her regular GYN called today to recommend we see the oncologic GYN again because he is concerned about her high estrogen level. Her latest ultrasound shows an enlarged uterus (19.3x5.8x11.0 cm) with at least four identified leiomyomata which are simliar to the prior exam, but comparison is difficult. At least one measures smaller in size, but the other three appear slightly larger. Right ovary is not identified with certainty; left ovary appears normal. Her estrogen level is 377, last time it was 210 or so. He wants to see what the oncologic GYN say because the level is too high. But we are sure that the oncologic GYN will say the same thing like last time - hysterectomy, likely total with removal of ovaries.

    Our regular GYN says that embolization is not an option because the fibroids are too big (60 x 59 x 58 mm in the fundus; 54 x 44 x 46 mm in posterior myometrium; 59 x 46 x 48 mm in left anterior and lateral uterus; 52 x 48 x 58 mm in posterior myometrium) and there are too many.

    All these talks of sarcoma and playing with fires scare us. We do plan to get second opinions, but from whom? I was thinking another oncologic GYN, a regular GYN since ours is retiring this month. I don't know if the fertility GYN is a waste of time because cancer is not their expertise.

    Are the fibroids not candidates for UFE? Please advise. Thank you.

     
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    Old 03-24-2015, 07:23 PM   #20
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    Re: Hysterectomy advice (uterine fibroids)

    I cannot advise you but will throw out some things to consider based on what I have learned over the years since my gynecologic experience.

    Maybe I am missing something here. Why the concern for cancer? Doesn't she only have fibroids? And the oncologist said that her risk for cancer is small (which it is very small for fibroids) so why the push to remove vital organs? Again, maybe I missed something in one of your posts.

    You were told her estrogen level was "high" at 200's and 300's. Those are normal levels for a woman who is not in menopause so I am not sure why they would be considered "too high." Of course, estrogen level peaks at a certain point in the cycle but during perimenopause, you cannot always go by the cycle day because women don't usually ovulate regularly any more.

    Unfortunately, you oftentimes have to seek out the proper specialist for the procedure you want done after doing your own research about your condition and all treatment options. Many gynecologists will not suggest UFE because they do not do UFE. Interventional radiologists do UFE. Although myomectomy (fibroid removal which preserves the uterus) is done by gynecologists, many do not have the proper skills or do not want to spend the extra time that may not bring any higher reimbursement than hysterectomy.

    And it is possible that you may not have as many treatment options in your insurance network because of the physicians in your network which adds another dimension of frustration to it all. However, you can go through the appeal process to go out-of-network for the treatment you desire if it is not available in-network.

    Hope this helps clarify!

     
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    Old 03-24-2015, 08:02 PM   #21
    thobuon
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    Re: Hysterectomy advice (uterine fibroids)

    HinSTLouisgal. Thank you for your reply. We were thrown for a loop re hysterectomy recommendation and talk of cancer, sarcoma, etc. the two doctors said a risk is still a risk, better not play with fire. As for the high estrogen level, the GYN said it was high. It did go from low 200s to high 300s, which sounds like a significant increase. At this point I am so stressed with worries. But I have read bad things about hysterectomy after effects, too.

    Our plan is to see another oncologic GYN and perhaps another reg GYN and ask them about interventional radiologists.

    I am grateful for support forums such as this one with kind people like you to help us through this issue.

     
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    Old 04-13-2015, 10:52 PM   #22
    frenchmonique
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    Re: Hysterectomy advice (uterine fibroids)

    yes it is needed. I had it done 2 years ago and it was the best thing I ever did. I found I had them after getting pregnant at the age of 41. My baby was 20 at the time. Fibroids grew and my baby had to be delivered via c-section and he was a preemie. my mother passed away from uterine cancer and she knew something was wrong but the doctors would NOT perform a hysterectomy at that time. By the time they were going to it she had a heart condition which prevented it and she later died. This scared me so I wanted the procedure but the attending doctor said no as well. I went back about a year later and talked to another doctor and after she read my chart and my family history of cancer she wanted it done. I have heard that sometimes cancer can hide behind a fibroid. so yes she needs to get this done and she will feel much better when its done. she will see the difference even if she has no trouble. she will not miss the cycle every month and she may go through instant menopause. Fibroids grew back too and thats another reason. if she is not having anymore children if she has some already I would recommend she do it.. I was scared too. Just pray.. good luck..

     
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