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  • Hysterectomy advice (uterine fibroids)

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    Old 10-22-2014, 05:38 PM   #1
    thobuon
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    Hysterectomy advice (uterine fibroids)

    Hi,

    I am asking on behalf of a friend.

    She has uterine fibroids for about 5 years which we and her gynecologist have monitored. She has not had pain or other symptoms so we adopted the wait and watch, no treatment. This year the fibroids have grown, enough to worry the doctor who ordered ultrasounds, blood test, and a referral to a gynocologic oncologist.

    She is 48; estradiol blood tests came back normal. The oncologist was not able to get a sample for an endometrial biopsy. He recommended hysterectomy. He did say that there is a small risk of cancer and this would prevent possible problems/symptoms down the road (bowel problems, pain, bleeding) and ovarian cancer. He said there are no long term effects, just pain for a couple of days and no lifting for six weeks.

    We are worried with his cancer talk etc. We have an appointment to see her regular gynocologist in two weeks. Is the hysterectomy Necessary? Is anyone here who is living with very large fibroids, waiting out for menopause (we will ask her doctor for the fibroid size when we see him)? Is there anything that she can do to help herself? She is not overweight, fairly healthy, and eats a pretty proper diet. What questions should we ask the doctor? I would like to continue with the wait and watch, but the gyno oncologist said it is better to prevent it from becoming an emergency down the road. Your help is much appreciated. Thank you.

     
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    Old 10-24-2014, 06:12 AM   #2
    STLouisgal
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    Re: Hysterectomy advice (uterine fibroids)

    Based on my experience (unwarranted hysterectomy 8 years ago) and what I have since discovered about the hysterectomy industry and the lifelong functions of the female organs, I would be very skeptical of this treatment recommendation. Also, his comment that "there are no long term effects, just pain for a couple of days and no lifting for six weeks" is untrue. The uterus has lifelong, non-reproductive functions and so do the ovaries.

    Fibroids are benign growths. A VERY SMALL percentage - less than 1% - are cancerous. It is normal for them to grow during perimenopause when hormonal changes occur. They do not require intervention if they are not causing symptoms. Heavy bleeding is the most common symptom and can be addressed with medication, either hormonal or non-hormonal (Rx Lysteda or Rx strength Aleve or Motrin). If the fibroids are pressing on the bladder and causing issues (which sounds like is not the case), the fibroids can be removed via myomectomy allowing her to keep her uterus and its LIFELONG anatomical, skeletal, hormonal, and sexual functions. Unfortunately, hysterectomy seems to be easier and more profitable so it can be difficult to find a surgeon with myomectomy skills or who is willing to do one. I have even heard of surgeons agreeing to do myomectomy only to "bait and switch" as late as in pre-op or in the operating room.

    Based on his comment about ovarian cancer, it sounds like he plans on removing her ovaries. If she does not have a predisposition / family history then her risk of OC is less than 2% (government statistics say 1.4%). A woman with all her parts produces ovarian hormones into her 80's for optimal health. Removing ovaries or their failure after hysterectomy (40% chance) has very serious effects on many aspects of health as shown by numerous medical studies.

    Hysterectomy is one of the most overused surgeries. A mere 2% are done for a cancer diagnosis. Even ACOG says that most are unnecessary with 76% not meeting their criteria. Many women (up to 73% in some areas of the U.S.) lose healthy ovaries at the time of hysterectomy. You did not mention if the surgeon plans on using the da Vinci robot. It has been heavily marketed for hysterectomies. They have to recoup the very high costs of those machines as well as the high annual maintenance costs. Another red flag.

    My gynecologist of 20 years used cancer scare tactics to get me into the operating room. This included referring me to an oncologist for a consultation. Based on my medical records, these two were "in cahoots." I wish I had listened to my inner voice that told me something was not right. Every aspect of my life has suffered as a result f this "assault" 8 years ago. I do not even look the same because I aged HORRIFICALLY fast (lost most of my hair and skin collagen / subcutaneous fat and muscle mass). I became severely depressed from the hormonal loss as well as many other horrific effects. And I feel totally asexual.

    She should research the lifelong functions of the female organs to understand what happens after hysterectomy and/or ovary removal. Just because this surgery is so common does not mean it is "benign." Sorry for the novel but I hope it helps.

     
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    Old 10-24-2014, 03:08 PM   #3
    thobuon
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    Re: Hysterectomy advice (uterine fibroids)

    Thank you, STLouisgal, for your reply. We were not expecting his recommendation, otherwise, we would have asked more questions. We should have asked for other options. But, truthfully, his advice was so stunning that my brain did not process the information fast enough.

    A couple of calls to his nurse adds more information: per his notes, it would be a total hysterectomy - uterus and cervix, possibly ovary, fallopian tubes. He does da Vinci but not for this since it is not laparoscopic.

    To his credit, he did say that cancer risk is low, but the surgery would remove the risk of fibroid problems and ovarian cancer.

    We will discuss this with her gynocologist. We want to either continue with the current watch-and-wait and explore other options aside from hysterectomy. If necessary, we would seek a second or third opinion.

    Thank you very much for your answer. It is comforting to know that there are people like you who share knowledge and experience.

     
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    Old 10-24-2014, 05:34 PM   #4
    Kszan
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    Re: Hysterectomy advice (uterine fibroids)

    I've had a myomectomy to remove a large fibroid that was 10cm. I would personally never opt for a hysterectomy unless I literally exhausted every available option first. That's my opinion. You might hear otherwise here but there is a lot of research suggesting that it's overused in times when other available options should have been tried first.

     
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    Old 10-24-2014, 06:21 PM   #5
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    Re: Hysterectomy advice (uterine fibroids)

    Thanks, Kszan, for your advice. I keep kicking myself now for not asking about options. We will see her gynocologist in two weeks. I may try to get an earlier appointment because I am greatly worried because of the gyno oncologist talk of potential complications, etc. He even said that if she were his wife, he would suggests the hysterectomy be done. He did say that it is her body and her decision, and that is is a difficult decision.

    Although he failed to get a sample for the endometrial biopsy, I think that we should ask her gyno for one. What other things should we do to decide how best to proceed with managing her fibroids? A friend suggested taking out the uterus to prevent possible the complications, like if the fibroids burst or block something. That stresses me more.

    I am thankful for this board as a place for information and support. Yours and others advice are appreciated. Thanks.

     
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    Old 10-25-2014, 02:36 PM   #6
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    Re: Hysterectomy advice (uterine fibroids)

    You said the fibroid is not causing symptoms. It sounds like the concern is that it has grown. But since she is 48, that is not surprising. Fibroids grow the most during perimenopause. How big is it and where in her uterus is it?

    I have been shocked by the number of women with whom I have connected who were needlessly instilled with fear by being sent to an oncologist for fibroids or ovarian cysts (which are also very rarely cancerous). It seems to be a hysterectomy industry marketing strategy. Did the oncologist say why the need for an endometrial biopsy?

     
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    Old 10-25-2014, 05:05 PM   #7
    thobuon
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    Re: Hysterectomy advice (uterine fibroids)

    He did not say why. He asked if it was ever done (no). He could not get a sample, however, since her cervix was not dialated enough. Is there a test to tell if she is perimenopausal? The blood tests (estradol) the gynocologist ordered came back normal. I do not know the size, quantity, location of the fibroids. I will ask when we see her gyno in two weeks. This gives me time for more research. What questions should we ask?

    Thank you so much for your help and that of everyone here.

     
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    Old 10-26-2014, 06:20 AM   #8
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    Re: Hysterectomy advice (uterine fibroids)

    You will want to know the specifics of her diagnosis. A request of her medical records from the oncologist (and possibly the gynecologist who referred her) would give you this information. It should include a copy of all workups - the ultrasound report which will tell the size, location, and type of fibroids as well as blood work. And you may be able to get a copy of the actual u/s image.

    Do your research about fibroids and the adverse effects of hysterectomy. Be discerning about the source of the information keeping in mind that hysterectomy is big business so you will not tend to find information about the long-term adverse effects. There is a loss of pelvic integrity (organ displacement and dysfunction along with skeletal changes - spine compression and hip widening). The uterus is a sex organ and many women report sexual dysfunction including loss of desire. The ovaries may fail altogether once the uterus is removed causing severe menopausal symptoms as well as increased health risks.

    There are some good books out there too - some by gynecologists who use organ-sparing procedures and some by women who seriously regret their hysterectomies and were not given informed consent. The web is full of women seeking help post-hysterectomy so that in itself says something.

     
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    Old 10-26-2014, 01:44 PM   #9
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    Re: Hysterectomy advice (uterine fibroids)

    Thanks STLoisgal. I just asked for a copy of the ultrasound. Not that I would understand it. I will try to see if we can see her gynocologist sooner. Will update you. Thanks for your help.

     
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    Old 10-27-2014, 05:45 AM   #10
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    Re: Hysterectomy advice (uterine fibroids)

    A two week wait to see her gyn is not that long and will give you time to research. You do not want to rush into this life-altering decision.

     
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    Old 10-27-2014, 02:59 PM   #11
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    Re: Hysterectomy advice (uterine fibroids)

    I changed the appt time before your reply. I will report back. An extra week would leave me bald from all the stress. I have taken Kszan and your advice to heart and will research and get second opinions. Thanks for looking out for us.

     
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    Old 11-14-2014, 07:09 PM   #12
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    Re: Hysterectomy advice (uterine fibroids)

    Literally everyone I've ever known (mom, aunts, a handful of older friends) have told me having a hysterectomy was the best thing they ever did. ?? Getting the ovaries out, much more debatable. ?? I wouldn't really hesitate - but I can get back to you after mine next month!

     
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    Old 11-16-2014, 05:38 AM   #13
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    Re: Hysterectomy advice (uterine fibroids)

    Since you mentioned "going bald" (in your case figuratively) I will say that the horrendous hormonal changes post-hysterectomy have caused me to lose most of my hair. It has been 8 years since the surgery and my hair is still falling out...surprised I have any left. This seems to be pretty common; at least most women I have connected with complain about it.

     
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    Old 03-17-2015, 07:21 AM   #14
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    Re: Hysterectomy advice (uterine fibroids)

    Quote:
    Originally Posted by Kszan View Post
    I've had a myomectomy to remove a large fibroid that was 10cm. I would personally never opt for a hysterectomy unless I literally exhausted every available option first. That's my opinion. You might hear otherwise here but there is a lot of research suggesting that it's overused in times when other available options should have been tried first.
    This is my opinion too, since you mentioned that she doesn't feel any pain nor heavy bleeding, I would suggest that you do every available option first before deciding to have hysterectomy. I had a total hysterectomy March of last year due to adenomyosis. But before i decided to have the operation, I was on medical management for almost 2 years. But I experienced pain and heavy bleeding that's why I undergone hysterectomy, I had my uterus and cervix removed but the OB left my ovaries because she said that they are functioning well and in good condition.

     
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    Old 03-17-2015, 04:18 PM   #15
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    Re: Hysterectomy advice (uterine fibroids)

    Thank you, vainbung, for sharing your experience and your advice. The GYN retired unexpectedly due to personal reason. It feels like starting over because we need to find another doctor. I have researched more and am thinking that we will see what the new doc has to say. 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. I am also wondering if we should look for a radiologist for UFE. But you are right that we should explore all other possible actions before even thinking about a hysterectomy.

    Thanks to everyone for your help and advice. It is good to know that we are not alone in this scary situation.

     
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