Please don’t get a hysterectomy without reading this blog

Dear Friend,

I am sending this info to as many of my lady friends as I possibly can, in hopes that you will pass it on to your circles as well. It is critical that you and the women in your life are made aware of this issue. 

This is an article that came out regarding a laproscopic hysterectomy procedure called morcellation. http://bit.ly/1m8mC9j . Simpified, the procedure basically chops up fibroids and the uterus into smaller bits so it can be sucked out of the laproscopic tubes vs women having to have a more invasive open procedure. The horror story behind this is that in the presence of cancer (not always identified pre-operatively even with testing) this chopping up propels the cancer throughout the abdomen and pelvis. This is referred to as upstaging the cancer. The couple highlighted in the article who experienced this in the Fall of 2013, Hooman Noorchashm and Amy Reed, are married physicians and the parents of 6 children. They are fighting for Amy’s life and to stop the practice of morcellation.

This blew me away, and I posted it to my Facebook and twitter feeds. Quickly I discovered that a friend had this same scenario play out for her cousin. Three more friends have subsequently written to say they are currently in the midst of having fibroids diagnosed and next steps are being discussed with their physician, so the info was timely. I didn’t want to hesitate to send a note to all of you to prevent one of you stepping into this horror story! Not on my watch!

 I wrote Dr. Noorchashm to ask if there was anything we could do to support him as he works to stop this dangerous practice. Here was his reply:

 “Thanks for your email. You can help us. Please fill out and send the form letter at the following link to your US senators and demand a congressional hearing.

http://sarcomaalliance.org/featurednews/   (site notes 1/400-1000 risk factor)

Please pass it on to as many women and friends you can ask them to do the same. The United States Senate must act to protect any more families from devastation.”

 You can also share and sign their change.org petition here: http://chn.ge/1frFI7P

 Please, please pass this info around to every mom, sister, cousin, friend you have. Please read the article and petitions. 

 Be well and be informed everyone! Julie

PS-In exploring this issue further, I have discovered a group of women who have experienced horrible side effects from the use of the birth control method called Essure. In the event of negative reactions to the device, it has to be removed via hysterectomy. Yep you guessed it, some have now discovered that they too have had previously undiagnosed cancer upstaged because of the morcellation technique used to remove the Essure. More here: http://www.wggb.com/2013/11/07/essure-birth-control-women-complain-of-serious-side-effects/

 

 

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15 thoughts on “Please don’t get a hysterectomy without reading this blog”

  1. Terri says:

    I had my lap total hysterectomy done in June 2006. The cancer doc said she pulled my uterus out via vaginally. Hmmm I wonder if she actually now? I had endometrioma’s and cysts on my ovaries and endometriosis over all of my female organs. Maybe this procedure you are concerned about started after I had it done or maybe since I was seeing a cancer doc she knew not to do the morcellation technique. Your thoughts?

    1. Julie Wiebe says:

      Hi Terri,

      I think it is best for you to direct that question to your physician. My impression is that the tissue removed in hysterectomy is tested/biopsied immediately post-op. This would be particularly true, if you were seeing a cancer physician and you would have been notified if there had been any change in your status due to the surgery. If you have any concerns please connect with your physician. Thanks Julie

  2. Liz says:

    Wow Julie, thanks so much for sharing.

    There are so many women in my family with pelvic floor ‘issues’ that have faced hysterectomy (or will at some point) that it scares me if they weren’t informed of the potential pre-op.

    Should be a standard verbally discussed disclaimer for every ob/gyn!!

    Blessings
    Liz

    1. Julie Wiebe says:

      Hi Liz,

      Apparently the risk ratio was discusses with folks starting in Nov 2013 (at least here in the US) per my conversation with Dr Noorchashm. His wife’s surgery was Oct 2013. As I noted in my note above, my impression is any removed tissue is biopsied immediately, and anyone with prior surgical interventions would have been notified had any upstaging of cancer occurred.

      1. Julie Wiebe says:

        Just a reminder if you have any concerns, please contact your physician! Julie

  3. Stacy says:

    great info, thanks Julie! I think it also needs to be said that there are just too many hysterectomies done to begin with and women should know that there are other options without the forever side effects and permanence of hysterectomy. With fibroids and prolapse, hysterectomy isn’t necessarily or always the best option. There are surgical options such as myomectomy that can save the uterus and still allow biopsy of fibroids (though it is much harder to find a surgeon who is willing to do them- it takes a higher skill level and longer operations. And the chance the fibroids can come back. But women should be given this choice!!). And for fibroids and other excessive bleeding issues, trying lifestyle changes first are worth a try. The Woman Code is a book that is helpful. Just saw this article today, worth a read (it mentions the laparoscopic hysterectomy- too bad it doesn’t get into the risks involved with morcellation!)
    http://www.thestar.com/…/canadas_high_hysterectomy_rate…

    1. Julie Wiebe says:

      Thanks so much for sharing this info, Stacy. It is great to understand ALL of our options as women and alternatives. Much appreciated! Julie

    1. Julie Wiebe says:

      Thanks! J

  4. Thank you Julie! If anyone needs infomation on Essure and the problems women are having with it our website is http://essureproblems.webs.com and we also have a private facebook group https://www.facebook.com/groups/Essureproblems/

    1. Julie Wiebe says:

      Thanks so much for sharing this info here! Julie

  5. Well, well, well! One more reason for me to keep my fibroid uterus! I have had uterine fibroids since I was 29 years old (will be 49 in November!) and at many junctures in my life have been advised to have a hysterectomy. I first refused because I was a single women desiring to have children. Now that I have my children, I refuse because I am fortunate enough NOT to have a lot of problems with my fibroids. I had an endometrial ablation in 2009 for heavy bleeding and have been pretty much problem free ever since.

    Women need to realize that in the absence of cancer (not the case above I understand), unless there are significant disruptive symptoms, there is no reason to remove the uterus at all! In the case of potential abdominopelvic cancers, care must always be taken not to spread the disease. Unfortunately, once again medicine has gone with the “latest and greatest” without researching ALL the potential pitfalls.

    Ladies, it is imperative that we do our own research and know EXACTLY what is being done to us and why, and the potential side effects. We can no longer place our total faith and health in the medical community in the expectation that they will put our health and wellbeing first. As we see time and time again, “Cost containment”, “technology”, “Physician comfort” and a whole host of other issues are considered before patient well being. We have to stand up and say no more!

    Well done Julie! Thanks for bringing this to our collective attention so we can all be aware, make our friends and loved ones aware, and potentially stop this harmful practice!

    1. Julie Wiebe says:

      Thanks for sharing your story, Darline! Love your take. Julie

  6. Sariah says:

    Sorry but, I don’t regret my hysterectomy.

    1. Julie Wiebe says:

      Sorry Sariah, I think you may have misunderstood the post. This isn’t an anti-hysterectomy post. THere are absolutely reasons to proceed with the procedure. I am trying to inform women about one type of hysterectomy that carries added risk not previously understood. I hope that clarifies things.

      Julie

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