Wednesday, March 16, 2011

An Open Letter to the HERS Foundation on the Anniversary of my Hysterectomy

Dear HERS Foundation:

A little over a year ago today I spent my nights nursing my newborn to sleep then surfing the internet for information about my pending hysterectomy. I had been diagnosed with cervical cancer and while the carcinoma was microscopic, in situ, and promptly removed, my doctor urged me to complete my young family as soon as I could and then to have a hysterectomy. I was pregnant within a week or two, and so found myself a year later with three small children, two of them under two years of age, still reeling from the health scare, and absolutely overwhelmed by the prospect of a major gynaecological surgery that would leave me unable to care for my babies on my own for more than a month. 

We sought several opinions from several sources -- other doctors, books, and the internet -- and I made a profound effort to arm and empower myself with as much information as I could.

That's what I`m like.

I research.

I read.

I ask questions.

I do not take medical interventions lightly. I think wholistically. I prefer natural solutions to surgical or pharmaceutical ones. I'm skeptical of the modern medical system's commitment to women's overall well-being. These are the same reasons I chose midwife attended waterbirths for my three babies. 

But I didn`t find a single source that advised anything but a hysterectomy for cervical cancer. It was obviously the right decision. Early detection and surgery almost certainly saved my life.

It has been one year since my hysterectomy and this post is for any soul out there who is about to undergo a medically necessary removal of their uterus and is wondering the following things:

Will I be less of a woman after I have a hysterectomy?
Will I be ugly after a hysterectomy?
Will I never want to have sex again after a hysterectomy?
Will I still be able to orgasm after a hysterectomy?
Will I be a husk of my former self after a hysterectomy?

Why might a woman be convinced of these things? Because the activist(s?) at the HERS foundation have spent a tremendous amount of energy spewing vitriol all over the world wide web so that women like me, who read and research on the internet, expect these consequences and worse. Their objective, besides selling books and DVDS, is to make sure women are terrified of having hysterectomies for any reason. According to HERS I would wake from aenesthesia an unrecognizable shadow of my former self, castrated, stripped of my sexuality and my ability to ever enjoy sex again. Not only that, but HERS adds for good measure, I will probably be startled to find that I love my children less because my body, without a uterus, will be unable to produce the hormones needed for "maternal feelings."

These are the things that had me crying on my pillow night after night leading up to the removal of my uterus. I was terrified. Like, sobbing into my pillow so the baby wouldn't be woken by my wailing kind of terrified. Though now that I've been through the surgery and the recovery the dire warnings of the HERS foundation seem almost laughable. Almost. They caused me so much anxiety.

Now, HERS foundation, I'm asking you nicely, please stop being such an asshole on the internet.

It's not that I have any doubt that hysterectomies are over-utilized in Western medicine and it's not that I don't think activism and education about this subject aren't valuable. I respect your mandate of educating women about our bodies and our medical options.

It's your methods that really piss me off.

I certainly believe that women should research any major medical procedure to the best of their abilities prior to consenting to it. Learning about our options is our right and our responsibility. But the HERS foundation, under a supposed mandate of "educating" women is actually hindering our access to medically relevant information by spreading so much misinformation and crap.

HERS claims, for example, that a women without a uterus can't manufacture oxytocin, the love hormone responsible for maternal bonding. They are wrong. Oxytocin is produced by the hypothalmus. If one needed a uterus to manufacture it, men wouldn't have any in their bodies, but they do. This is just one example in a long list of crimes against science the HERS foundation has perpetrated in their "informational" materials.

These "facts" and this awful video by the HERS foundation insists that without a uteurus a women's torso will slump and balloon, her vagina will probably turn inside out and hang down her leg, and she will almost certainly gain thirty pounds while she ponders suicide and leaks feces.

I'm not recommending a hysterectomy to anyone who doesn't certainly need one -- it's no cake walk, Baby. If I could be whole again, I would be. But I'd rather be alive. And a hysterectomy did not make me ugly. It did not make me less of a woman -- I am still 100% woman. It did not destroy my sex life or my ability to orgasm, it did not make me love myself or my children less. I can still run 5K (without, I might add, leaking feces), I can still breastfeed (without, I might add, pondering suicide), and while I don't at all keep up with the housework, I really can't blame the surgery.

There is quite a bit of calm, neutral and sometimes reassuring information out there for women researching hysterectomies. But HERS-formation oozes through the cracks on message boards, on blog comment sections, and on wikis. There were warnings from so many people who said a hysterectomy ruined their sex drive, their life, or their wife.

"My wife was a beautiful, vibrant sexy woman before her surgery. Now she's a withered shadow, an empty husk of the person she once was. I would do anything to go back in time and stop the surgery. I would do anything to have my beautiful wife back."

I started to notice odd similarities though -- not just in the experience being described but in the unusual and repetitive turns of phrase, such as "empty husk" that these apparently diverse sources would use to talk about their experience. Then I started noticing crazy turns of phrase, like "you should kiss the ground the HERS foundation walks on." It eventually became apparent that many of the users on, for example, this Health Board for hysterectomy discussion (Mollyfox, Elaine333 and Triple777) are most likely the same person.

The talk page at the back-end of the Wikipedia article on hysterectomy shows a long, persistent struggle between persons trying to keep the page factual and neutral and someone who keeps changing the text to make it scary and confusing. This person would add, for example, the phrase "female castration" whenever possible and contribute all manner of tangents.

"It reads like an anti-hysterectomy manifesto," one Wikipedia contributor noted.

"This article seems to have a very serious POV problem," noted another. "It looks like its been "got at" by an activist of some sort."

Indeed.


Please stop being such an asshole on the internet.

Telling women to never trust a doctor who suggests a hysterectomy for any reason whatsoever is not helpful.

It saddens me to think about the number of women who die every day because they don't have access to hysterecomies. Cervical cancer is a huge killer of women in the third world. It's a shame. If there's just one woman who did have access to a hysterectomy but chose not to because she was terrified by what you posted at www.hersfoundation.com or www.hysterectomyconsequences.com/ and died because of it, then shame on you. That's on you.
Terrorizing women who are about to have a hysterectomy and turn to the internet for information and or consolation is not noble. Whatever ordeal they are going through is probably scary enough without your help.

Why don't you go harass women who have breast cancer or appendicitis for a while? Tell them how they'll love their children less and probably want to kill themselves after their surgery.

Consider anti-caesarean advocacy. I definately fall into the camp that would like to see the c-section rate lowered in North America. I rally for more awareness of the cost of surgical birth to mother's and to their babies well-being. And I applaud some of the really wonderful VBAC and cesearan awareness advocates out there. What they do is tell women that their birth experiences, their bodies, and the way they feel about their bodies and their births matter. What they don't do is insinuate "facts" all over the internet such as "women who have c-sections will never be able to enjoy orgasms again", "women who have had c-sections are less because of it" or "c-sections are unnatural and leave women horribly disfigured."
You empower women by giving them facts, not by flooding them with fear.
Your advocacy has crossed the line from helping women to harming women.


You have personally caused me a lot of very real pshycological harm and pain.
Please reconsider your mandate. Do you want to make money selling books? Do you want to terrorize women who are undergoing a painful transition in their lives? Or do you want to empower women? I hope you choose to work towards the latter. To do so, revisit your tactics. And please stop being such an asshole on the internet.

Sincerely,
Betsy

154 comments:

  1. wow. I knew about your surgery and certainly understand your fears about it. I had no idea that this was a topic that was even remotely debatable– either you die or you get a hysterectomy. Seems like a straightforward but difficult choice.

    I'm not sure why people get caught up in causes like that, ones that are obviously A) WRONG, like science WRONG and B) hurting others. Does that person really believe that crap? Do they just want to hurt others? Are they just living out their own messed up feelings? Regardless, I hope other women are smart enough to see that it's bullshit.

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  2. Betsy,

    You gathered information about hysterectomy and made a decision that you feel was right for you, to undergo a hysterectomy was right for you.

    Every woman, whether she has heavy bleeding, fibroids, prolapse, cancer, post-hysterectomy problems or any other issues related to her female organs, deserves all the information required to help her decide whether to be treated -- and if so, how.

    In your blogpost you attribute statements to HERS that you say are incorrect. For instance, you said "HERS claims, for example, that a women without a uterus can't manufacture oxytocin, the love hormone responsible for maternal bonding. They are wrong." You must have HERS confused with another organization, HERS makes no such claim.

    The information in the video "Female Anatomy: the Functions of the Female Organs" is anatomical fact. It was vetted by two gynecologists, and a Professor of Gross Anatomy.

    The adverse effects of the surgery reflect the experiences reported by 1,000 hysterectomized women.

    HERS wishes you good health and continued healing.

    ReplyDelete
    Replies
    1. After viewing the HERS video, I was reduced to tears and actually had to remind myself WHY I was being told I need a complete hysterectomy. I, indeed, felt like Betsy, about the sexual aspect, maternal aspect and suicidal aspect of your video as being inappropriate. This was very destructive to me as well and hope to God that anyone, like Betsy ( or me) who needs a curative hysterectomy is not talked out of it by your crepe-hanging doom and gloom video, but instead chooses to die so they can still work, be active and sex.You have done a disservice here. End of rant.
      Nancy m.

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    2. Get over it Nancy m and you too, Betsy! The information on the HERS website tells the Truth. It is better to be reduced to tears from reading that information than being reduced to tears after having the surgery. Once you have the surgery, you can never go back. It is permanent. Doctors do not tell women another medical word for the removal of both ovaries is called "female castration" or that the removal of the uterus only, hysterectomy, often results in complete ovarian failure (de facto castration) within two to four years following hysterectomy. Our ovarian hormones are not just for sex and reproduction. They are important to every cell and organ in our bodies. There are many other sources besides HERS that tell the Truth about hysterectomy and ovary removal. So, Betsy, I truly hope you will be feeling as wonderful a few years down the road as you are now. My life was devastated by the removal of my uterus and ovaries, and I wish I would have had access to the information on the HERS website and many other resources as I do now.

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    3. Get over it Nancy m and you too, Betsy! The information on the HERS website tells the Truth. It is better to be reduced to tears from reading that information than being reduced to tears after having the surgery. Once you have the surgery, you can never go back. It is permanent. Doctors do not tell women another medical word for the removal of both ovaries is called "female castration" or that the removal of the uterus only, hysterectomy, often results in complete ovarian failure (de facto castration) within two to four years following hysterectomy. Our ovarian hormones are not just for sex and reproduction. They are important to every cell and organ in our bodies. There are many other sources besides HERS that tell the Truth about hysterectomy and ovary removal. So, Betsy, I truly hope you will be feeling as wonderful a few years down the road as you are now. My life was devastated by the removal of my uterus and ovaries, and I wish I would have had access to the information on the HERS website and many other resources as I do now.

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    4. I informed HERS some time ago about a hystetectomy promoting website but they told me that they could not join and comment as a non-profit organisation. I fear for those who view this website...thank you HERS for your website.

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  3. Dear Betsy, I know most of the women that post and it is not one person. In fact, if you want, you can get most of our numbers or email addresses from HERS and talk to us directly. It may sound like one person because basically we all have the same side-effects from a hysterectomy and castration. I have a few other symptoms that is not even mentioned; like being sick to my stomach all day long.

    You had your surgery just a year ago and it sounds like you needed the surgery to save your life. Alot of health problems start to take place in a few years or maybe 10 years, but problems will arise sooner or later.

    No where on the HERS Foundation web site do they put fear into women, only the facts. Women need to know what might happen to them following this surgery. I only wished I had read their web site because I would have known that for fibroids, polyps and cysts there are alternative surgeries. HERS doesn't say do not have a hysterectomy if you have CONFIRMED CANCER. My girlfriend in Florida had cervical cancer and they removed just the cancer leaving her hormonal sexual organs; uterus, ovaries and cervix. That was 10 years ago.

    My story like so many others started with bleeding from given medication to control hot flashes. The more medication, the more bleeding. But, we didn't know that the medication was causing the bleeding. Next, came the words, "I think you need to get rid of the bleeding." When I was examined I had only a pea-sized fibroid. I didn't have much to go on only the doctors word that it would be the best thing to do and that it wouldn't change anything about me. He did not give me any alternative surgery because I found out he wasn't skilled in alternative sugeries.

    I had gone to cosmetology school with two small boys hoping to have my own salon after five years of working. I graduated with a 4.0 and was on a scale of 1-10; a 20. That is how much energy I had. Five years were done and I was ready to make the move. Then came my surgery which was 22 years ago. I woke up sick and to this day am still sick, plus many of the side-effects mentioned on the HERS web site. I wasn't getting any answers from doctors; only them telling me it was in my head. I was searching for answers as to why I was feeling so terrible when I ran across an article in a magazine by the HERS Foundation. I got my answers.

    I tried working another two years, but had to give up the career I loved. I only had energy to raise my two sons and keep up a large home. I would like to say this is usually what happens. Women lose their career, marriage, but most of all, their health and well-being.

    Most husbands do say their wife was a beautiful, vibrant sexy woman before her surgery and that they would do anything to go back in time and stop the surgery. Attend a conference and you will hear this said more than once.

    If you would attend an HERS Conference you would see for yourself that they are only informing women, not telling them what to do. HERS has helped many thousands of women in the US and other foreign countries.

    As far as C-Sections, this is another unnecessary surgery the majority of the time. This could be something you can research and start a foundation informing women about the consequences of having this surgery.

    ReplyDelete
    Replies
    1. My mom had a hysterectomy when she was still in her 40's - it saved her life. My aunt had one in her 50's which saved her life. Cancer is not something you play around with. BTW, both are in their 80's and still living. One lost ovaries as well, and one was able to keep an ovary. But NONE of these things happened to them. Explain that.

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    2. ^^ My comment was a reply to the above person that said these things would happen to Betsy down the road, and not necessarily to Gracie.. That is crap because my mother and aunt are proof it does not happen to every woman. ^^ I might add that I can't think of a woman who has been forced to have a hysterectomy by her doctor. Sheesh. And thank you, Betsy!

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    3. My mother was not forced but she was pressured. Only to be told afterwards that what they thought was cancer actually wasn't.
      Her doctor then said since she was through having children it wasn't like it mattered anyway.

      Delete
  4. I knew you'd find this letter without me having to draw your attention to it, but truly I'm in awe of how quickly you've found it! Less than 24 hours and your whacktivists are onto my obscure little blog post in the farthest reaches of the WWW. Wow!

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    Replies
    1. Thank you Betsy for your informative blog. I too became absolutely terrified after reading information put out by HERS foundation. The scare tactics were a bit over the top, also the fact that they had an awful lot of things "for sale". This made me suspicious so I started investigating the HERS foundation itself. Since then, my mind has been put more at ease. I'm really not into scare tactics, they are used way too often in our society these days and cause more harm that good. Combine that with the fact they are seeking financial gain by spreading terror in the hearts of women, equals not a foundation I'm willing to put my trust in.

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    2. badly said betsy...hers may not be perfect and neither are you or I.

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  5. HERS - your "data" is really bunk. I think you should bone up on the most basic tenents of statistical research such as a "control group" and "double-blind studies". Perhaps you could check out "Designing Experiments Using the Scientific Method for Dummies" from your local library or at least google these terms.

    You can't just survey your mailing list of 1000 women who have read your book about how hysterectomies have ruined their life and then blame every complaint they have 10 or 20 years latter on their surgery.

    If I showed 1000 women a "Winnie the Pooh" video and then asked them, 10 years latter how many of them have experienced "weight gain", "loss of libido", "burning with urination", and "change in breast shape" I couldn't reasonably conclude that Winnie the Pooh causes changes in breast shape, even if 15% if women reported saggier boobs a decade later.

    See how that works?

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    Replies
    1. Keep your head held high nora/hers and weather this storm and remember that only you know the extent of how much you have achieved and helped others.

      Delete
  6. Betsy,
    Sadly, there is nothing here to debate, if women were given the facts there would be no reason for HERS to exist.

    You appear to want to cast dispersions on the organization and women who have been helped by HERS and hold it in high regard, unchallenged. Of course, that's your choice and right, but don't presume you are helping women.

    Fact: HERS had held 27 annual conferences before publishing thier book in 2009
    Fact: The DVDs being sold are all from projects that have been freely available to the public
    Fact: The Adverse Effect Data has been an on-going effort over HERS 28-year history

    I contacted HERS after I was given a hysterectomy, without any previous contact with the organization. While I initially explained away the changes that started to occur after surgery - eventually I couldn't do that and I had to find answers. The doctor who performed the surgery, suddenly didn't have any answers and claimed to not have heard any of my complaints before. HERS offers a wealth of research at a nomial fee, to which I added my own research in an attempt to understand what was happening to me.

    You were lucky to have come across the HERS information, so at least you had the choice to make an informed decision. For me, I assumed I had a choice and eventhough I did not agree to a hysterectomy I was given one for my benign fibroids.

    Hopefully women who come across this blog, will consider all that's been written here as their life and future is really what's at stake.

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  7. Betsy, A notice of your blog came in the Google alert that HERS has set up that notifys us when the organization is mentioned on the www.
    You can sign into your Google account and select Alerts to receive email alerts on any topic you choose.

    Women reported their experiences after hysterectomy between 6 mos.-15 years after the surgery, the majority were between 1yr-5yrs post-hysterectomy.

    You cannot have a study with a human control group of women, all of them having had surgery, half of them having had a hysterectomy and half not, and none of them being told if they had their uterus removed.

    I hope in time you will educate women about the important life long functions of the uterus and ovaries and not encourage them to undergo a surgery that is over utilized, rarely life saving, and always damaging.

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  8. Betsy,
    One more thing, I don't know if you came across this in your research, but I thought I would pass it on as it was a little closer to home and a documentary done in 2004 by CBC Television The Nature of Things (documentary includes specialists including a Toronto surgeon)


    Sex, lies and Secrecy: Dissecting Hysterectomy 2004

    Carol Moore-Ede, David T Suzuki, Canadian Broadcasting Corporation, and Filmakers Library, inc

    Some medical experts claim that a shocking 98% of hysterectomies are unnecessary. Yet, half the women in North America will have had their ovaries removed by the time they are 65. 1 videocassette (45 min.)

    MEDIA 2-7522

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  9. HERS: your data is so terribly skewed, it's insulting to all humankind.

    Firstly, stop conflating oopherectomies (the removal of the ovaries) with hysterecomies (the removal of the uterus.) These are not the same surgery.

    Also, stop filling my gmail with letters about how lucky I am to have the HERS foundation to terrify me before my surgery because at least I'm "informed." Information is factual and objective. HERS-formation is skewed and ridiculously one-sided.

    I'm not going to read or watch another thing you spew into the universe.

    Now.

    I know you can't have a blind study in which women don't know if they have had their uterus removed or not. But you could conduct a study in which the women you question don't know exactly what information you want to get from them and women who haven't contacted you expressly because they are traumatized and believe their hysterectomy is to blame for ever ill in their life. You are gathering only worst-case scenario information and presenting it as if it's the norm. It's not. You don't have a category, for example, for increased libido or decrease in pain. Don't a lot of women have a hysterectomy to correct a prolapse?

    You also need a control group of women who didn't have hysterectomies in the timeframe you are looking at, otherwise there is nothing to correct for normal occurences in the population. Can you honestly not think of another reason women might experience changes in breast shape over a decade other than the hysterectomy they had ten or fifteen years ago? For reals? Nothing springs to mind?

    I'm just a stay-at-home mom remembering what I learned 15 years ago in STATS 101. If you really are interested in providing women with information as opposed to mis-information, it shouldn't be so desperately easy for me to poke holes in your methodology. But it is. Fund some research that stands up to a modicum of scientific scrutiny if you want to educate women.

    I absolutely agree that your activist-zeal is impressive, especially considering you must need to spend so much of your time contemplating suicide and leaking feces, as your "data" indicates is the norm for any women without a uterus.

    Here's an idea -- what if you actually put aside your juggernaut of a cause for a wee moment and consider, honestly consider, if scare-tactics are the best way to "educate."

    Also, it's mind-boggling to me how you and your flying monkeys keep insisting your video must be true because a handful of "medical professionals" say so, yet you tell women to never trust a "medical professional" who tells them to get a hysterectomy.

    My doctors worked to lead me out of a bad place. Your foundation has contributed only fear and obfuscation.

    If your motives really are to help women, you've lost your way. Do something about it.

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  10. Wow. I had never heard of HERS until now, but wow.

    Regardless of where you fall on a debate, I think that the "don't be an asshole on the internet" advice stands. And coming to someone else's blog in order to leave comments like this is, sadly, assholery.

    (Shut up. It is so a word.)

    I'm sorry that you were so frightened, Betsy. I'm glad you're using your voice in a way that works for you. It sounds like HERS is using their voice effectively on their own platform, so I hope they can back off and leave you alone on yours.

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  11. Betsy,
    The title of this post is an "Open Letter", I thought the purpose of such a format was not only public or to provide one's critique, but also to stimulate discussion?? Regular followers may not have heard of HERS and had your critiques actually addressed specific points and positions by HERS, then further explanation could have been provided on their position. That would have provided an opportunity for everyone to learn.

    No one has attacked you?? But you have attacked an organization before understanding thier position and mission. The orgnization has a 29-year history with woman from all walks of life, on the issue of hysterectomy, many discussions with medical/legal/research authorities, and reviewed the medical literature. Can either of us say the same??

    I think HERS is in a position to provide a POV that would be worthwhile to consider, at the very least. I think the only things that combat fear (which is actually fear of the unknown) is truth and information, which then allow one to see their way clear no matter which path is chosen.

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  12. It really does sound like all the pro HERS comments above is the same person just pulling stories out of their files... Just saying.

    Also, isn't the HERS foundation supposed to help women going through this procedure? Shouldn't you feel something for this poor woman that you scared the crap out of instead of helping? She is the reason your foundation exist. Atleast an apology is owed to her regardless if thy change anything or not. They have obviously done the opposite of their purpose for this poor woman.

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  13. All commments under my name have been my own as a woman 14 years post-hysterectomy.

    I remember when my sister was having her first child (and I had not had any at that point either) - so it was first for the both of us. She read "A Good Birth, A Safe Birth" authored by two non-MD women. The book covered a wide-range of issues involved in the childbirth process and most specifically warnings. From doctor training, medicine and money, doctor interventions, avoiding c-sections, sexuality of pregnancy and birth, knowing your options (or as the author puts it - if you don't know your options, you don't have any), etc.

    My sister took this information to heart and took certain measures including delaying when she went to the hospital once labor started. Nothing in the book was anything her ob-gyn was telling her nor the folks at the birthing center. Now critiques of the book are of course objectivity, the fact the author's were not doctors, and isn't it frightening to learn about all the minestones associated with birth - but I have a very beautiful, talented, and intelligent niece and would whole-heartedly recommend the book.

    This is in the same vein that I would recommened the information at the HERS site.

    This issue affects women at epidemic levels, so it does sadden me if women aren't helped which is why I made a promise to myself to simply tell the truth of my experience.

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  14. HERS whacktivism shares NOTHING in common with the natural childbirth movement. HERS is about terrifying women, dubious science, and a message of hopelessness and despair.

    Like this comment, from Gracie: "You had your surgery just a year ago and it sounds like you needed the surgery to save your life. Alot of health problems start to take place in a few years or maybe 10 years, but problems will arise sooner or later. No where on the HERS Foundation web site do they put fear into women, only the facts."

    Do you SERIOUSLY not see the irony there Gracie? For realsies?

    The natural childbirth movement is about empowering women to respect their bodies and their abilities to make informed choices. That is NOT what HERS is doing.

    If anti C-section activists made a video about how terrible C-sections were, promised women that they would have a C-section unless they gave birth at home in their closet by themselves, promised them that if they had a C-section their sex life would be over for ever, that they'd probably be incontinent for the rest of their life, that they wouldn't love their babies as much as other women do, and that they'd probably want to kill themselves, and then insisting that every pregnant woman in the industrialized world must have that important information before they gave birth, then we could draw some comparisons.

    Oh wait, you'd also need to set google alerts so that anytime anyone mentioned being pregnant on the internet, your flying monkeys could leave a comment or send an email about how you were pregnant once, and then you were c-sectionized (which is as much of a word as hysterectomized is, by the way) and ever since you've been an empty husk of the woman you once were, your life is a total shambles and you can't hold down a job because of the explosive diarreah that all women who have had c-sections have, and that you'd give anything at all to be able to go back in time and give birth in a broom closet all by yourself.

    Does that sound empowering?

    Oh, and to women who have had c-sections, offer no support or hope.

    Oh, and of course, if a woman ever claims to have survived a C-section and insisted that she'd recovered, she loved her baby, and was able to use a toilet like before and is enjoying her sex life, you'd have to write her several emails about how she should wait 10 or 15 years but at some point, she'd realize her life was forever ruined.

    FUCK YOU SO MUCH HERS FOUNDATION.

    What I'm trying to tell you here is to treat women like human beings. To try, please, to understand my POV of view as a HUMAN BEING.

    Also, for the record, my husband still thinks I'm a vibrant, sexy women, you dumb-asses.

    The only "fact" the HERS foundation is proving is that you don't need a utereus to be a gigantic asshole on the internet. But who doesn't know that?

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  15. Also, do you know who else was impressively organized with a large membership and had lots of input from medical/legal/research authorities and had all their propaganda vetted by experts so that it was "factual?"

    The Nazis, you assholes.

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    Replies
    1. Betsy, you seem to have to take out all your ANGER on the HERS and other women who FEEL BAD after the surgery. You seem to have to DENY the FACT that these women and their problems DO exist. Otherwise, there would be NO "HERS"s, as simple as that.

      And what are you trying to PROVE and why do you have to do it? You are a happy Mother and wife, enjoying your surgically saved life, but it does not mean that your positive expierence with the surgery will apply to everyone else only because she will read about it on your blog.

      Are we really hurt more by the HERS than by the surgery?



      Delete
  16. Wow. A lot of adoptive moms are sans uterus. And Grandmothers and all post-menopausal women and oh yes, MEN, might lack those hormones but last I checked they are all capable of LOVE.

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  17. First you run HERS down, then you take comments off that supports unnecessary hysterectomy/castration. What I commented on was definitely the truth about this damaging surgery. I am sorry you feel you have to lash out at someone because you are hurting so bad. I know the feelings after my hysterectomy. My life is and never will be the same.

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  18. What are you talking about Gracie? I didn't take any comments off.

    Are you talking about the personal emails you
    sent me that asked questions like, "Why do you want women to have hysterectomies?" If you are wondering why I didn't reply it's because that question does not deserve a response.

    I am not lashing out at HERS because I am "hurting so bad." I am telling HERS that they are hurting women by using scare tactics. I'm telling you that you terrified me. I'm telling you that my battle was largely psyhcological and made much worse by the terrifying sputnum HERS has been spewing across the interweb.

    I am telling HERS to stop using scare tactics to educate women about something that is scary enough without coming up with theories like "you'll love your children less."

    Also, I think HERS should change your name from Hysterectomy Educational Resources And Services to the Anti Surgery & Statistics Horde for Oopherectomy Loss Education ...

    because you aren't actually furnishing information about "hysterectomies" you only ever talk about hysterectomy+castration by which you mean oopherectomies, which is NOT THE SAME SURGERY as a hysterectomy. This is a medically relevant point I'm making.

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  19. When my mother had a hysterectomy she became even less of a mother than she was before the surgery. I didn't think that could be possible! She went from indifferent, to loathing her children. She's an awful grandmother too. She is more like a man in that its all about her and has a very stunted sense of empathy. The facts of hysterectomy are scary, but reality is scary too. I have not seen anywhere on the Hers website that says that oxytocin is no longer produced after hysterectomy and they make a point of differentiating between hysterectomy and castration because so many surgeons arbitrarily remove the ovaries with the uterus as standard procedure. As the child of a woman who had a hysterectomy, I think you are doing a disservice to women and their loved ones with the misinformation and vitriol in this blog.

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    Replies
    1. I'm sorry you had an awful mother. So did I. She never had a hysterectomy though. I'm sorry that it hurts so badly that you need to scapegoat her behavior onto her hysterectomy. It will honestly hurt less if you come to accept that this was her nature, and had nothing to do with you. In truth, you are the one who has latched onto misinformation, because there is nothing scientific that supports that hysterectomy causes one to become indifferent, loathing or any particular feeling towards one's children. Furthermore, you even make the case that she already was "indifferent" toward her offspring prior to hysterectomy. This proves that her feelings toward her children were independent of hysterectomy. It is only a hop, skip and jump from indifferent to loathing anyway. It sounds to me like your mom had a narcissistic personality disorder, and it only worsened with time.

      Delete
  20. Thank you Betsy for taking on this organization. I have been researching options and have come across HERS repeatedly on the internet. I was immediately struck by their scare tactics. I agree that Hysterectomies are not for everyone, but while reading their information, watching their video, and reading their blogs, I started to feel that their website was trying to push that hysterectomies are really not for anyone. As someone with a medical background, I was struck by the presentation of "statistics" from a questionnaire that blames hysterectomies on everything from burning face to dental problems. A study with a control group would be helpful, matching for variables such as age, other comorbid conditions, and comparing those with or without history of hysterectomy. It would also be beneficial to show statistical significance, power, P-values, Confidence Intervals, etc. But, all they give is a percentage of a certain 1000 individuals over the past twenty years (yes 1000 women in 20 years - that is an average of 50 women per year) who were picked in some way (we're not told how) and basically told that the cause of their problems was their hysterectomy.

    I have read some of their blogs and find it interesting that if anyone tries to write something positive about their hysterectomy, it is as though the wolves come out to attack. I even saw some of them write that you should never trust anyone who tells you their hysterectomy was good for them because they are probably too ashamed to admit they were fooled into getting one. I guess I can no longer trust my mom, mother-in-law, multiple aunts, and sister-in-law, as well as some close friends. All of whom are years out from having theirs.

    Finally, I find it interesting that if you actually want to get info from a "medical journal article" it only tells you the topic and then requires payment for it. You can go to PubMed and find full medical articles for free instead, or a local medical library if there is one nearby.

    Nothing beats doing your research, getting multiple opinions, and talking with resources that you trust about these issues.

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  21. A lot of the misinformation that I'm responding to (e.g. the oxytocin thing) has been zapped from the internet (I'm writing a year later) by responsible medical professionals and other people concerned with truth and science and such, like the volunteers who read and edit Wikipedia.

    Also, thanks for commenting Anon. I agree the "don't believe any woman who tells you a hysterectomy didn't ruin her life" thing is very disturbing. Also the emails they are sending me about how sooner or later I'll notice how I'm not really a proper woman anymore.

    Instead of just speaking out against hysterectomies they are creating stigma against women who have had hysterectomies. Awful.

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  22. To Anon w/medical background:

    - why would the HERS organization need to be taken on, it's a women's health educational organization, providing information for any woman's consideration
    - on the survey, the only thing we can assume is that 1,000 chose to respond as it is not a mandatory survey in order to take advantage of the services or information provided by HERS
    - I would assume that double-blind studies have already been done by the medical community; how else would you explain the current practice of hysterectomy for benign female conditions, unless there was hard evidence that the benefits outweighed any risks
    - as expected, HERS provides the titles of selected medical articles for one to then go to PubMed or anywhere else for additional research or if time/resources are limited, one can order same articles from HERS for a nominal fee
    - HERS does not take the position of not trusting women who claim to have had a positive hysterectomy, as HERS displays clearly on their website information concerning female anatomy, allowing for any woman to consider in relation to the surgical procedure hysterectomy. Comments by individual women are provided just like the comments you have made on this blog.

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  23. BETSY I THINK YOU HAVE A MENTAL DISORDER... IT COULD BE A RESULT OF YOUR HYSTERECTOMY! if you have an amazing life after hysterectomy good for you but majority of women don't. so spare them.

    ReplyDelete
    Replies
    1. Women who have good life after hysterectomy accuse and diagnose the women who don't - with "mental disorder", and vice-versa. Shame on you all, you are all ridiculous and agressive.

      We ARE DIFFERENT, so different that sometimes a mother and daughter have different reactions after apparently the same surgery.

      I mean my case. My mother had hysterectomy 25 years ago and has never complained. I had mine five years ago and.... I do NOT function at all. She is very surprised with the outcome of MY surgery. It makes her angry, aggressive, sarcastic, cruel to me, with NO empathy whatsoever. She does NOT understand at all what I have been going thru and why. She has become abusive, like you are sometimes being here for one another.

      It has separated us for ever. A psychologist advised me to reduce our contact because I have been reminding her of her old trauma of the surgery, in most negative way and she is protecting herself in that way. I am accusing her of NOT warning me about some negative side effects, but in fact she had nothing to warn me against, feeling better without her uterus herself.

      I was 20 when my mother had her surgery, whereas MY surgery was something else: I had no children and miomectomy was to make it safer and more possible for me.

      Two different women, although a mother and a daughter, two different scenarios, two different surgeries.

      My mother had a life-saving hysterectomy after a few years of heavy bleeding, and blood transfusion. She signed well-informed Consent to hysterectomy, and I was lured into 'miomectomy' of one submucosal fibroid by a greedy Dr 'Crook' in order to have a child. I was in love and wanted to have a child so much that it was quite easy for any crook to manipulate with my profound feelings and emotions at that time.

      My mother and I both do not have our uteruses but in fact, we have NOTHING in common, or to talk about. This topic is just making us abusive, accusatory, passive or active aggressive for each other. I had to say goodbye to both, to my mother and to my motherhood. Sexual life is gone, too. I will never advise the risk of hysterectomy to women in the circumstances alike.

      Delete
    2. If being forty and still wanting to have the first and probably the only child IS a symptom of 'mental disorder', then that was my case.

      Delete
  24. also your picture on the blog shows how crazed you are. so be happy with your hysterectomy. thank god and stop blasting non profits doing good work. you can tell people about your unique experience without ranting about people who help create awareness.

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  25. I dont understand how a surgery, removing the same organ can cause such divisive opinions...Clearly everyone's personal perspective plays a huge part in the "Hysterectomy" experience...I was confronted with a tough decision about a year ago after diagnoses with breast cancer...Learned I was BRCA2 positive (a gene mutation that increases ovarian cancer risk x20), the recommendation was to have ovaries, tubes AND uterus and cervix removed. I was 53 years old and thought the surgery would not change me and I had alot to gain with the risk of ovarian cancer so high. I read hysterectomy info on the internet. I read bad and good. Anywhere from "multiple orgasms after hysterectomy" to "sex means nothing, my husband left me and I want to kill myself" (these experiences were read from sources other than HERS). I so wanted to feel safe from ovarian cancer so, thinking I could be one of those with multiple orgasms...I consented to the surgery. ALthough I consulted an expert in Hereditary Breast and Ovarian Cancer,
    I later found out that the Hysterectomy part was "unjustified" per an article my doctor co-authored. That only tubes and ovaries were necessary for risk reduction....I think the general consensus is, the uterus has no purpose after childbearing years..
    I feel 50/50 about my decision on the ovaries and tubes but I feel 100% violated with the hysterectomy....Sex is painful, I hope it gets better, Its been a year now.
    I wish I had read the HERS website and had consulted someone who had an interest in keeping me whole...I wish, I wish, I wish....
    I can't beat myself up, but the truth is the doctors knew the potential outcome of these surgeries and she sugar coated the after affects saying I probably would not feel any different since I was 53 and almost through menopause anyway...That was a LIE...
    I feel I was given the sales pitch when I was consulting an 'expert' on Hereditary Breast and Ovarian Cancer. No matter what the reason for the hysterectomy. I should of been given the truth about what I was about to consent to.
    Simple as that...

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  26. Thanks for trying Betsy! I totally agree with you!

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  27. Totally agree with you too Betsy,well said!

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  28. Betsy,

    I am considering a robotic laparoscopic hysterectomy this spring to remove a 16 week size uterus loaded with fibroids that has delivered three babies all via C sections after a myomectomy. I was severely anemic until I started taking two iron pills a day, and I'm sure that if I ever stop, I'll just relapse into exhausting anemia again. I have a low grade dysplasia which has my OBGYN in a serious tizzy to get me the procedure in order to get a potentially dangerous cervix removed.

    I have bumped into HERS several times over the years while I've surfed the net searching for someone out there that could confirm something positive about getting this ratty old thing taken out. GOD BLESS YOU for taking up this battle. I've been creeped out by them from the start, and I totally relate to your angered reaction. Actually I found your blog after leaving their site searching for a rebuttal to their fantastical anti-science.

    Thank you Thank you Thank you!!! Some day when I have long since recovered from my own hysterectomy, I'll reflect on the comfort that your blog offered me in my time of decision making. Keep up the good work.

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  29. Thanks so much, Banditsgirl. Good luck on your journey. It`s not easy.

    That`s one of the things that`s so annoying about all this HERS nonsense -- of course I have a sense of loss about my uterus. And of course it was a painful thing on every level. But when it`s all said and done, you just have to figure out how to go on being a woman without a womb. It`s just not helpful to be told you are less of a woman (you`re only about 150 grams less of a woman) or that every problem you face forever more is a result of your surgery and that life is now hopeless. RUBBISH!

    Every woman will not have the same journey. No woman should be silenced. No woman`s experience should be invalidated.

    Did you check out this one:
    http://honest2betsy.blogspot.com/2011/03/uterine-orgasms-myth-and-mayhem-online.html

    Love and healing!
    Betsy

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  30. For vicki c:

    There is actually no divisive opinions, there is only either an understanding of the current practice of hysterectomy or an unknown understanding of it. The only issue is the medical community's refusal to provide women with the truth.

    Some truth's would be:
    - the current collection of treatments for benign (normal) female conditions are ineffective
    - the amputation or complete removal of the uterus is not the same as the menopausal phase or simply being sterile
    - hysterectomy creates permanent injury; and
    - removal of central female functions (uterine and/or ovarian) of a women's body does not make one less of a woman, but it is a health diminishing procedure

    While any woman may not be aware of these minimal truths and the information provided by HERS, it does not change the lifetime costs.

    HERS does not advocate against women's choices, but it does advocate that you be aware of what you are choosing should you deem hysterectomy is your option - and currently this information is not being provided by any doctor, hospital websites, AGOG, or consent forms. This information is every woman's basic right.

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  31. Betsy - take your own advise and stop spreading crap on the internet. It is not your job to decide what information other women should have access to.

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  32. Betsy - Thank you so much for your blog.I am having a hysterectomy this week because of a medical situation that has become life or death, and I was horrified to type in "preparing emotionally for a hysterectomy" in a search box and see phrases like "castration" used in describing it in an attempt to get women to avoid it at all costs. My life is not worth that cost. The anxiety that it caused me to see their over-the-top tactics was so harmful and added unnecessary pain to an already-very-painful process of grieving I am going through this week (and know I will go through after the surgery too). Should women understand accurately the risks, issues and complications a hysterectomy causes? Yes. But no one should EVER tell them that they are less of a woman because of a surgery that they needed (or even a surgery that they chose in some cases) - that is cruel, brainwashing, and dangerous. I am so grateful for your blog and the encouragement it provided me - that hysterectomies are very, very hard to go through...but they are survivable and some women have very positive experiences after theirs. I am hoping and praying I will be one of those women, and seeking out resources (bioidential hormones, acupuncture for hormones and post-surgical recovery, close monitoring by my physician during recovery, physical therapy, counseling, pastoral care, support of friends and family, etc) that I believe will help me in my journey of recovery. Here's to spreading the word about resources like those (and so many others) for women who have no better option than a hysterectomy - and can give them the best possible chance (albeit, no guarantee) for a positive outcome. You were a blessing in my life today by your courage in speaking out and helping empower women like me. Honesty with compassion seems much more helpful than exaggeration with scare tactics...and I pray that even HERS may someday continue their anti-hysterectomy advocacy, but in a kind, compassionate, honest, and loving way instead of in a harmful, terrifying one. I am sad, I am nervous, I am grieving about what my body will go through this week...but I am no longer afraid.

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    Replies
    1. What She Said! Beautiful!...

      I had TAH/BSO for Uterine cancer. It was very confusing whether to have the ovaries out because my early stage cancer had aggressive cell areas.

      I have enough sadness and stress without being called a person whose life is Over.

      HERS' mission is admirable but their method is terrorizing.

      And Betsy - i just love what you've given voice to here, I can't thank you enough for making me feel less freaked out by it all and less alone...

      Delete
  33. Thanks for commenting, Hope.

    I wish you much grace on your healing journey and a speedy and full recovery!

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  34. HERS Foundation is the only organization that uncovers TRUE medical facts about consequences of hysterectomy. I WISH I had found out HERS BEFORE my hysterectomy, It was UNDISPUTABLY NEEDLESS & unconsented by me. And I HAVE BEEN & WILL be regretting it for the rest of my "life", it has completely RUINED my health, my sexuality, leaving me a cripple at age 43 ! However, the PROBLEM is: there are women with CANCER, who have to undergo hysterectomy because the surgery SAVES (not ruins) their lives. In such cases, HERS information on hysterectomy IS "scarry" & NOT helping. However, it does NOT mean that HERS should stop what they are doing for women with FIBROIDS, it does NOT mean that we can still ALLOW doctors to LEGALLY perform needless harmful surgeries above the LAW. There are thousands of women here, in Poland, unnecessarily castrated and suffering without end (unless they end their lives by themselves), with all the after-effects as published by HERS in their materials. We can NOT ignore them, otherwise their suffering & ruined lives would be WASTED & in vain. This is exactly what MY husband would say: "My wife was a beautiful, vibrant sexy woman before her surgery. Now she's a withered shadow, an empty husk of the person she once was. I would do anything to go back in time and stop the surgery. I would do anything to have my beautiful wife back."

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  35. CASTRATION, no matter how it sounds, IS the proper
    objective medical description of hysterectomy with/or without ovaries. Even if we are appalled or feel uncomortable by the "name", it does not mean that we will not be expierencing its consequences. I have had hysterectomy 5 years ago & did NOT use this "name" (for obvious reasons), but I have been expierencing all the consequences of castration, physical, anatomical, sexual & mental. It does not work this way, I,m afraid: "Don't name it, so you won't have it, what you have".

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  36. It is reasonable and necessary that every patient should and must be informed about all possible
    predictable consequences of the medical procedure
    before she signs her consent. HERS do it, while too many doctors do not.

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  37. The term castration has two meanings:

    1) to remove the gonads of an animal

    2) to deprive a person of power, especially by attacking their masculinity or femininity

    Don't you think that telling women who have had their uteruses removed that that they can't ever be happy/healthy/sexual people again is pretty much the definition of castration? I do.

    Stop castrating women.

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  38. The situation of women with cancer is very different from the situation of women with uterine fibroids. There is no common ground for them for discussing their issues together. HERS is educating women with fibroids how to avoid hysterectomy. The term "castration" is removing gonads/sex organs, of any living being, human or animal.

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  39. At first I thought HERS was a useful resource...after reading their responses here however, I think they are stark raving mad! What an irresponsible way to behave about such a serious topic.

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  40. A lot of responses here, are NOT from HERS itself but also the responses from many other women (patients),some of them - post hysterectomy. Many women are deprived of their uteruses due to a benign fibroid, and they were unaware of the losses, changes they might expect after surgery, or other non-invasive alternative treatments; there is no org. or institution to protect them or to act preventively against "fraud in inducement" used by so many doctors & hospitals, all over the world.

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  41. Yes,it is difficult for the small % of women who undergo hysterectomy for a life threatening problem. Hysterectomy is not always warranted when there is cancer.Some early endometrial and uterine cancer can be treated conservatively. Whether a woman has cancer or not, she has the right to full, accurate information about the consequences of the surgery. The damaging effects of hysterectomy are scary. There are some things in life that are truly scary. That does not mean that the truth should be withheld from women. Should all women be treated like little children who should be guarded against things that might frighten them? It is a maternalistic attitude toward them.Women should not be treated like children, or as though they are too frail to know the truth; the list with losses & changes a woman may suffer from, after hysterectomy, is true and proved by too many cases, complaints.

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  42. Betsy wrote (QUOTE): "Don't you think that telling women who have had their uteruses removed that they can't ever be happy/healthy/sexual people again is pretty much the definition of castration? I do"...
    Women who look for the information in net & find HERS, are mostly the women who have NOT had their uteruses removed YET. They are looking for med. information before they consent to the surgery because their doctors do not provide it. The "informed consent" should include all possible scenarios, the good ones, worse and the worst, based on up-to-date medical science and case statistics. It still can happen that a woman with a fibroid is told by the doctor and induced to undergo a miomectomy (removing a fibroid), and she wakes up without her uterus, and she can not sue the "castrater" because he assumptially "saved her life".

    What he did, is not "such a big deal", after all; he had only witheld a minor additional information; that, if there is a hemmorrhage during a "bloody miomectomy", he will have to cut the uterus out in order to finish the operation quicly and save her from bleeding out to death on the operating table.

    In HERS you can find the correct accurate information about all the risks of miomectomy, and how to "outsmart" a doctor as such, and not to wake up in shock, deprived of a fibroid - but at the same time, deprived of your precious organ, without your prior actual consent and against your conscious will.
    If you want NOT to be a victim of the doctor's dysinformation, manipulation, malpractice, abuse, you have to know all about it..., and HERS is very helpful in that matter.

    Before my surgery, I trusted and had relied on the doctors' reassuring statements, "how wonderful life is...with or without uterus, no big difference", and none of those statements has turned out to be true. As a "bonus", I have also had my urinary tracks damaged, my "guts" do not work as before, my job, sex life and marriage is gone. I suffer from profound depression, pre-early menapause, and before I signed my consent, I had been told that "removing a fibroid only, would be my best and most healing choice".
    HERS does not tell the women after the hysterectomies that "..they can not be healthy, sexual people anymore". These women are NOT the HERS's target. If there are such women, that's great. They are probably living their happy lives and have no need, post factum, to search in the network for the "wrong, misleading" information how to make themselves feel worse than they do.

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  43. Betsy said: HERS, your data is so terribly skewed, it's insulting to all humankind.

    Hers data is not "skewed". We are not speaking of 1,ooo hysterectomized women, used for Hers research and included in Hers statistics, but thousands of women all over the world, reporting so many problems after the surgery.

    Betsy, how can you take such a responsibility for the well-being as the outcome of all such surgeries, how can you speak for "all humankind"? You want to be supportive, helping, I know, but attacking the only organization dedicated to helping women in some ambivalent medical situations, is not the right track.

    What is really "insulting to all humankind", or "womankind", is the threatening number of needless hysterectomies, or what a woman can hear form the doctor: you do need your female organs at this age any more", and many other deeply insulting "medical insults". The unjustified, profitable hysterectomy performed- is an insult to "humankind". Ignoring women's psychology, delicate complex structure, attacking their souls with a surgical knife, needed or not- is an insult to "humankind". Treating women instrumentally and telling them after the surgery that they "...are probably sick in mind, abnormal, if they can not accept the effects of the surgery and function" - is most insulting to "humankind".

    ReplyDelete
  44. Betsy, in my case, it was all just the opposite.
    I went to my surgery very optymistic, with no other, but my own intuitive knowledge of the consequences, never searched or read anything about hysterectomy. No HERS scarred me,nothing. The gyns, even less. I did not even know the word "Hysterectomy". I found HERS some time after, when I was trying to find out what has been going on with me, but in no way reading HERS was detrimental for me. Vice-versa, I was "happy" to find out that I am not some kind of a unique "lost case", and not the only intelligent woman who had made this mistake.

    ReplyDelete
  45. banditsgirl you said"I have a low grade dysplasia which has my OBGYN in a serious tizzy to get me the procedure in order to get a potentially dangerous cervix removed."
    Please do your research on low grade dysplasia.. Every woman has low grade dysplasia at some point in her life. It is so common it is considered normal. Your doctor like so many others is trying to put the fear of some "potential cancer" into you just to convince you to have the hysterectomy. I've seen this tactic been used before.
    Of course I bet you don't believe me. Just google Angela Raffle or Professor Baum- two cancer screening experts and understand how common cervical dysplasia is how rare cervical cancer is and how inaccurate pap smears are.

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  46. A few things:

    Nora, I certainly don't expect an apology from you for my cervical cancer. Not your fault.

    An apology for terrorizing me would be nice though. Presenting worst case scenarios as normal and inventing fake statistics to make it appear so and publishing crap all over the internet to make sure women who are considering hysterectomies are terrifying is NOT INFORMING THEM.

    I'm not the paternalistic one, you are.

    And I certainly don't believe all these nutty stories come from different people.

    There is a very obvious pattern whereby somebody out there on the internet leaves a supportive comment on this blog saying that my personal story has helped them or they agree with me, and your Google alerts lets you know, then you deluge my comment board and inbox with worst-case scenarios that are apparently written by diverse women, but are obviously not.

    I'm well-used to the flavour and tone of your posts by now and there's no mystery that they come from the same fanatic.

    One of the hallmarks of your P.O.V. is the perpetual insistence that healing from a hysterectomy is not possible, that persons who have been "hysterectomized" (not a word, btw) are doomed to a life of depression and disease, and that there is nothing any woman can do about this because her physiology is ruined and this will cause her a lifetime of psychological, physical and sexual misery.

    It's such bullshit. It's so insulting and degrading on so many levels.

    Turn off you victim mentality for 20 seconds please and try to understand that women with or without uteruses are complex people who don't deserved to be terrorized by your misinformation.

    Do me a favour, please, and leave me alone. I don't want to hear from you anymore.

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    Replies
    1. Some people love to play the victim and feed off it. Good riddance to victim energy sucking vampires! :)

      Delete
  47. Betsy, I am not Nora or HERS. I am who I am. And I am not a "fanatic". But, on the second thought, if you want to introduce this term, OKey. I am "fanatic" - in the same way as you are - but from my own perspective, how damaging the surgery can be. And I am responsible for my truth and my writing here.
    When you were creating this blog, you should know that there might be some people who feel, think otherwise, with paradoxically different expierences than yours, and some posts might not be in your "flavour", or accusing HERS for "misinformation".

    Why do you blindly and persistently deny the posts of those women (like me) who sincerely describe their lives after the surgery as "psychological physical and sexual misery"? Why do you deny a simple truth that HERS is the only organization helping women with uterine fibroids to avoid a risky hysterectomy?

    I did not know about HERS before my surgery. Now that I do, I have already helped a few women I know, to avoid hysterectomy and HERS was also helpful. These women are thankful and grateful for it.
    Betsy, I would like to assure you that many women are suffering after the surgery indeed, and it's no "bullshit".

    There is no point in fighting for the statistics and numbers. No matter if it's 20% or 60% of suffering "victims". What really matters is how to reduce the number of unnecessary hysterectomies. It is a universal problem. And there is such a phenomenon as "the battle for uteruses" with the doctors and HERS is in the underground.

    It's like in the war. In the II World War first of all the Jewish Nation was to be exterminated, in principle, but in the whole process, so many other people had to die.

    So, even if your feelings have been hurt on the way, in some way, by HERS, on the other side there are plenty of others for whom HERS or "worst scenario" cases were a warning "blessing".

    You do not realize, Betsy, that you are a "fanatic" as well, but the only difference is that you are a fanatic from the opposite point of view, your personal view. The women who do suffer all the misery after hysterectomy have the same need as you do - to "shout" it out to the whole world and help others avoid it, just as you feel a tremendous need to convince others about your truth, and from your perspective.
    Sometimes, in order to save, let's assume, ten people, on the way one must be "sacrificed".

    But in fact, you are not even any such "sacrificed victim". You can be happy that you are among these fortunate women, living a happy life, despite your surgery. Others, don't.

    Although I am not Nora or HERS, I will "leave you alone" and your blog, as you wish. I will stay with my own "fanatic" blog, and I don't think that our two different "fanatical" blogs contradict or collide with each other. They only serve two different matters and causes.

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  48. Seems to me that two different streams: those with benign fibroids who are being told hysterectomy, and those with cancer. Obviously in the latter case to save soemoens life do the surgery! But Besty you seem truly upset by the foundation, as you say they imply some sort of less "feminine" nature as a result. Luckily you are not feeling that and I don't think you should feel insulted. As a holistic female, I do find doctors push surgery myomectomy or hysterectomy as "useful," but don't in my experience give the full picture of side effects. I'm grateful to have the full pic negative and positive. I mean how many times has medicine had a "miracle" and then in few years discovered the negative effects and usually no one is punished even if there were serious doubts about the procedure or medication. Lets face it medicine is big and powerful business, and many decisions are not make in the individuals best interest but statistics and insurance policies that push certain "remedies" over others.

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  49. Betsy I am glad you are doing well and hysterectomy oopherectomy is the right choice for cancer. I suspect your ovaries were left intact I think the real difference comes oopherectomies I have several friends who have thought removing their uterus was beneficial. I however had a complete hysterectomy oopherectomy 14 months ago and it has made my life a nightmare I feel like an old lady at 40 have had severe problems wth anxiety and depression which I NEVER had before surgery I feel as I struggle to get through each day and I am not the mother wife daughter nurse that I was before surgery. This IS lifechanging surgery to so many i was so glad to stumble across HERS in my attempt to figure out what was going on with me. I have seen multiple DRs tried multiple hormones antidpressants meds to get me back to normal. Iam doubtful I will ever quite feel the same my surgery was for nothing thought I had ovarian cancer but didnt. I will do everything in my power to prevent this from happening to other women and especially my daughters.

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  50. I see the posts from the HERS Foundation are clearly labeled, and I would not attribute any other posts to the organization.

    HERS needs no defense as anyone who actually reviews the inforamtion on the site will be able to get access to the medical articles that document the issues resulting from the various forms of uterine removal/amputation and/or ovarian removal. HERS then attempts to take these sterile facts and show how they affect women's lives via vehicles from women's own accounts, the play "un becoming", a female anatomy video, and the book "The H Word".

    Additionally, because of the unrestrained practice of performing hysterectomy for benign conditions and unconfirmed cancer - HERS advocates for anatomical information to be put into the hands of women and raises awareness concerning Informed Consent.

    It's as simple as that, there is no demeaning of women, or scare tactics, or arguments against a necessary hysterectomy, or misuse of the medical term castration:

    "female castration
    removal of the ovaries, or bilateral oophorectomy; spaying."

    I personally would not recommend hysterectomy to anyone. A better strategy would be to employ as many health promoting tactics as one could afford (employing these tactics after hysterectomy is too late), which does not include any known ineffective and health diminishing medical procedures.

    And for cancer, one should take the necessary steps to ensure they are dealing with confirmed cancer, and then go from there. But given the rates of reproductive cancer are similar for both women and men, this will affect a smaller portion of the population (if surgery is pursued) versus the current epidemic and society-changing levels of women.

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  51. Why some women after hysterectomy do not complain...? because they are told it is all in their heads so they don't speak up.

    Women don't speak up because they don't want their husbands (or friends) to know they don't enjoy sex anymore.

    Women don't speak up because their friends may call them crazy.

    Women don't speak up because it may take years before their bad symptoms appear & they start collapsing.

    There is no way you are going to come out of this bloody hysterectomy feeling BETTER, than with your bloody...painful menstruation.In the long run, things are going on in your body that you can't control.

    You may be satified at first, especially if you have been bleeding much for years, but you don't have to wait too long before the after-effects take over.

    If a woman tells you that having a hysterectomy /castration is the best thing that ever happened to them, they are NOT telling the whole truth. But they have the right not to tell the truth, for any reason, and it's useless to go into this any deeper.

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  52. What a very sad person you are.

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  53. Nope. I'm not sad. I'm a happy, joyful person who is glad to be alive.

    I am angry, though. At you. For being such an asshole on the internet.

    Everytime someone comments about how much my blog posts on this subject has meant to them, you post something ranty about female castration and how I'm a liar if I say I'm not miserable.

    I think you should look inside your heart and figure out why this is important to you. It might help you be a whole person again.

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    Replies
    1. Dear sad person

      This is important to me because I went to an OBGYN with a simple cyst. I said NO to a total hysterectomy, yes ovaries included. He came into the pre op after I was gowned and IV'ed and relaxed with meds (as I was EXTREMELY nervous) and insisted I sign a NEW release for a TAH 'Just in case'.
      He REPEATEDLY told me he would NOT remove a thing unless 'TOTALLY NECESSARY. I woke up sans everything. The pathology report showed a normal uterus and normal ovaries.

      If I had cancer, as you do, there would have been no discussion. It would have been a given to have it all out. As it was for me, I had no issues. My life, from that point forward, changed dramatically. I was told that I was 'crazy' to have the issues I was having. I was put down. I was intent on taking my life. It wasn't until I found HERS that I realized that I am NOT crazy. That my feelings and issues are experienced by everyone and that doctors preform hysterectomies for one reason and one reason only. MONEY (EXCEPT for your situation, which is the ONLY reason)
      PLEASE, HERS just wants women to be INFORMED. The majority of hysterectomies are done for benign reasons and not at all necessary.

      I said NO. I was gutted anyway. No one thinks that yours was not needed. HERS is about INFORMATION. I am glad you are OK. Really. No one would think otherwise. It is just that doctors do NOT provide information. Good, bad or otherwise.

      Do not hate people who want to 'inform'. That is truly the best way to make the decision right for YOU. Right??

      You can respond to me if you want. HERS is not an enemy. I am not associated with them but I would be dead now were it not for the info I got there. And there are still days.

      I am very glad you are good. Why can't you believe that?

      Delete
    2. Maybe you can't be believed by someone that you address as "Dear sad person" - perhaps you were mistakenly addressing yourself? Your mode of address is proof of your status as a jackass.

      Delete
  54. Betsy
    thank-you for your message. I had a hysterectomy 3 months ago and it is the best thing I ever did. All women's situations are different and I would advise all to get second opinions and as much info as possible. But for me it has improved my life and how I feel dramatically. The HERS stuff scared me too but I am glad I listened to others who were more open minded. I have started going back to the gym with some mild exercises and my stomach is starting to look flat again. Hysterectomy is NOT the end of the world!

    Lisa

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  55. Thank for this post, Betsy. It was truly courageous of you. I have a hysterectomy scheduled just a little over a month away. I'm a 35 year old stay at home mom to 3 little ones (ages 5, 3, and 2). I don't have cancer, but I've had problems with my periods since I started them at the age of 12. I missed so much school due to the severe cramps and weeks of bleeding, that I was put on the pill just after my 13th birthday. Accept for the times I was trying to get pregnant, or actually pregnant I have had to take the pill just to control my bleeding. Now that I'm over 35 I'm no longer willing to continue taking the pill. I've had many side effects from the pill. It makes me very depressed and now after my third baby, it no longer controls my bleeding as well as it used to.

    Many women in my position can try ablation, but I appear to have adenomyosis. I'm not willing to risk making things worse with an ablation. When my doctor mentioned removing my uterus and cervix to stop the bleeding and cramps I was thrilled. I've been dealing with heavy bleeding and terrible cramps that disrupt my life, and now the lives of my children, for years. I've known women who've had hysterectomies and they were all pleased with their results. In fact, I had never heard anything negative about the effects of a hysterectomy until I found the HERS site.

    I originally was supposed to have my hysterectomy in December, when my husband had 4 weeks off of work, but after reading what HERS had to say I panicked and canceled the surgery. I'm angry at HERS for causing so much fear. Sometimes fibroids can be treated by removing the fibroids and benign bleeding can respond well to ablation. But for those of use with benign bleeding and cramps that are intense enough to interfere with daily life that is caused by adenomyosis, our only options once the hormones stop controlling the pain and bleeding are either live with the pain and bleeding or have a hysterectomy.

    HERS almost had me scared to the point that I was going to continue living with my extremely heavy periods that leave me laid up on the couch with a heating pad, unable to be a wife or a mother. I know HERS doesn't really think any benign conditions warrant a hysterectomy. I guess none of them have had adenomyosis. My mother and husband have given me the courage and strength needed to reschedule the surgery.

    On a side note, you mentioned c-sections in your post. I watched the wonderful documentary "The Business of Giving Birth" and it was truly eye opening. I had 3 c-sections, so have thankful the option is there, other wise I wouldn't have my children. I have a severe case of Lichen Sclerosus and am unable to have a vaginal delivery. But, it looks like the multiple c-sections have contributed to my current state of extreme cramps and even heavier bleeding. Since my 3rd c-section I even cramp daily now, and not just when I'm on my period. So, it is very likely that my impending hysterectomy is necessary due to my multiple c-sections. For me, it was a necessary evil if I wanted children. But, I would not wish a c-section on my worst enemy. Doctors need to not jump to a c-section delivery for normal, healthy pregnancies.

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  56. I am so thankful I came across your letter Betsy. I am a 48 year old woman who has been experiencing very heavy bleeding and excruciating pain during my periods for several years. I am just in the beginning stages of trying to decide the best course of action to take. I have been researching as much as I can on the internet and yesterday I came upon the HERS Foundation Female Anatomy Video. Terrifying is the proper word for it. I balled my eyes out after reading that. I became very depressed and stayed that way until I read your letter. I don't know if hysterectomy will be my course of action but I am so very thankful to you for lightening my spirit (as I cry again in joy and relief) and giving me HOPE.

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  57. I had hysterectomy a few years ago (fibroids). It is doubtful that I had had to have it. It was an elective surgery but the choice and decision to undergo the surgery was more on my doctors' side than me. It was presented as most beneficial.

    But it should NOT have happened to me. I could have lived longer with my painful periods, fibroids until my natural menopause. I wish I had known more about effects of removing uterus because the surgery have caused me much more damage than my fibroids and uterus.

    Without all this factual (HERS) knowledge I was too optimistic, unaware of dangers, how my body and mind would change afterwards. And it did, profoundly. Before the surgery I had not asked myself questions,

    Will I be less of a woman? Will I be ugly? Will I still be able to have orgasm?

    so what that I did not ask myself all these questions? Later in life it turned out to be exactly so; I am much less of a woman, I am ugly, rapidly aging cripple, urinary problems, lost sexual desire, feelings, no orgasm is achievable. I am not myself anymore, profoundly depressed, bathing in surgically induced pre-early menopausal sweat, etc.

    I was forcing myself to live as I had used to... before, denying any negative effect possible from this surgery. On what false grounds? - because there are other women who DO not complain, who do not expierence what I am expierencing...so what? I am who I am, I am not the other.

    Most of my problems are mentioned by HERS.

    Am I the only one who matches so good the HERS description...? on women's blogs I find that I am just one of many...

    So I would not blame HERS for their publication. The information they provide is NOT out of the blue, it is not unsound scarring tactics, or any exaggerated distorted truth. I am a living proof of that, with many others. The women after hysterectomy DO feel miserable and DO have such health problems as HERS warns against. Some wish they were dead...

    Please, don't be "offended" by the word "castration". It is what it is. And not every mind and body can cope with this fact (in history of mankind castration was done to war prisoners as most cruel penalty, men committed suicide or became psychopathic)

    Hospitals worldwide DO perform too many hysterectomies harmful and medically unjustified. There is a long list of the procedures they perform for business, and hysterectomy is on top of that list. Mass media already publish this information more often, half of the hysterectomies for fibroids could NOT and should NOT have happened. It happens epidemically in Switzerland, Great Britain, France. And some measures must be taken NOT to let this happen again. I speak about all the cases when considerably healthy sexual women enter hospitals for removing fibroids and do come out as broken cripples.

    Doctors are blinded by profit and do not evaluate properly the patient's potential, they are ignoring many other aspects that should be taken into consideration. Even when a woman tells them, "it is beyond my consious possibility to cope with the outcomes of hysterectomy...', they ignore it. Then they lure you with a beautiful perspective of removing your fibroids and you may just as well wake up without all the rest, beside fibroids. They persuade you into the surgery, and they are playing the Russian roulette. Later, nobody is responsible for the opposite outcome. What you hear is like, "the surgery was successful but the patient passed out, so it's the patient's fault that perhaps she was NOT the proper candidate for this kind of treatment".

    No social insurance instituation is willing to help the victim of improper fatal treatment. They are telling you, go to hell, or hang yourself if you were so stupid to let it having been done to you, who trusts the doctors? didn't you know the "rules of this game?"

    any radical lucrative surgery for benign illness should be banned by LAW because later the LAW is protecting the abuser, NOT the victim.

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  58. I am concerned about the doctors some of these women are seeing. I mean what kind of doctor tells a patient hysterectomy is the best/only option, aside from women who have life threatening issues. If my doc said that I would consider another opinion. I am having a hysterectomy this week, hysterectomy, not oopherectomy. This decision was made after three years of bilateral pelvic pain, an ectopic pregnancy which required removal of my left tube, taking birth control to try to alleviate pain which did not work, and finally uterine prolapse and rectocele. I was given all my options up front by two doctors, neither of which pushed the hysterectomy as the best or only option. If either of them even presented it in that manner I would have seriously questioned that. As far as findings from studies I have read from women who have had a hysterectomy, many of the side effects reported seem to be things that most definately could have occured even if the uterus was still there. I don't believe there is enough true evidence to report either way if its right or wrong, I believe its up to each woman alone based on her feelings and symptoms. That being said I believe there are a lot of websites scaring women about having a hysterectomy. I think also that some of the side effects reported on these sites are largely based on whether the woman chose the surgery as compared to being required or pushed towards having the hysterectomy. Sad that the voices of bad experiences are so much more heard online.....I mean there are plenty of women I have spoken with who say hysterectomy was the best thing they ever did, so who goes online to rave about that, no need to do that. A lot of the time it seems people only speak up when something is bad and the good doesn't get reported.
    I wish the bes of luck to all women making their choice as to whether hysterectomy is the best option for you and pray that it is in fact your choice and not that of a doctor or website.

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  59. Betsy, I hope you live a long, happy and healthy life, sounds like you have made the right medical decision together with your Doctor.
    But the HERS foundation is not telling women with cancer not to have hysterectomy, they are advising women with much less serious conditions, like fibroids, not to think hysterectomy is the only solution.
    I am a 51 year old woman with 9 small fibroids, causing me pain and heavy bleeding during my periods. I saw 3 different doctors here in the UK and ALL 3 suggested a hysterectomy, so I had agreed to have it! Then I went home and searched the internet. I came across the HERS website and thank goodness I did. I cancelled my surgery and changed my diet, and things are much better. I am feeling quite positive that I may be able to hold off on any surgery, and perhaps when my menopause comes the fibroids will disappear. I am crossing my fingers that this will work for me. But if it doesn't I know there are many doctors willing to perform the hysterectomy on me!
    I feel well informed now, I know that hysterectomy will 100% remove the pain and bleeding, but I also know that there could be many side effects ( but if I had cancer I would certainly be willing to live with the side effects if it saved my life.)
    I am hopeful for you and your future good health, and I am sure you hope the same for me.
    Thanks to the internet, we can get additional information to make tough decisions about our health. I am extremely grateful to the HERS Foundation for helping me to make my decision.

    PS you sound so aggressive in your blog...you do not need to use profanity to express your views.

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  60. Dear Betsy,

    I truly believe that it was divine intervention that I came across this post on your blog. I’ve had fibroid tumors (3) for the past seven years. My bloated abdomen is now the size of a 5 month pregnancy. Although I've known for a long time that I don’t want to bare children, I never seriously considered a hysterectomy for 2 reasons (1) Fear of inconveniencing my boss and co-workers (2) Disappointing my mother who's still hoping that I'll have children in spite of the fact that I've told her numerous times that I do not want to have any.

    I turned 40 a few weeks ago, and after much sole searching I have decided to do what is best for me and not other people. I used to love working out and staying lean and fit, but as my fibroids grew, I allowed myself to put on weight to cover my protruding abdomen. When I roll over at night, it feels like I'm lying on someone's fist. It's extremely uncomfortable for me to have anything at all in my bladder. One of my fibroids has calcified and it's literally as hard as a rock. My menstrual periods are heavy and clumpy due to the fluid being unable to drain properly. I'm on the verge of switching from pads to Depends undergarments due to some "near misses" at work.

    For years, I've tried everything from herbs to a completely vegetarian diet in an effort heal myself naturally to no avail. I decided on Easter Sunday that it was time look into some surgical options. Fortunately, I live in the same city as the renowned Texas Medical Center where some of the best surgeons in the world are housed and I believe that God has lead me to someone with the skill and the compassion to help me. Like you, I've been researching the pros and cons of hysterectomy for years.... and it was my research that led me to the laparoscopic method.

    This morning, while looking for both information and encouragement about the procedure, I ran across a very frightening video on YouTube produced by the HERSFoundation. All of a sudden, all of my research and all of the BALANCED information that I received from my doctors went down the drain as I was told (essentially) that my life would not be worth living after the procedure. My heart sank as I heard that I will end up with a mannish figure, unable to control my bowels, organs collapsing onto each other, zero sex drive and a diminished desire to live overall. In the entire seven years of my research, I have never, ever come across such a dreadful and hopeless presentation about hysterectomies.

    I know that there are risks with any surgery, not matter how simple or complex it may be. And I'm not looking for anybody to sugar coat anything for me. But I think that any medical presentation needs to be accurate, balanced, and compassionate and that video that I saw on YouTube was none of those things. We all know that no major surgery is going to be a walk in the park and it WILL change your life, but that doesn't been that hysterectomy is the end of the road for us.

    I came across your blog post while doing a google search and I applaud you for your balanced and compassionate viewpoint on the subject of hysterectomies. It helped to ease some of the anxiety and fear caused by that video and your story restored some of my hope that I can come out on the other side of this challenge a better person with an improved quality of life.

    Bless you for encouraging women who are already going through a challenging time. There are indeed angels on the web.

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  61. WAY TO GO BETSY! Thank you for taking these morons on...

    I too was completely caught unawares by this seemingly helpful organization that is really nothing more than wolves in sheeps clothing. I was stunned by the video where they have politicians rallying to eradicate any form of hysterectomy from the planet no matter what. They willingly admit that they want to abolish all forms and methods of hysterectomy so that NO WOMAN should ever have to experience the negatives that can occur. THey believe this surgery is completely medically unnecessary for everyone. Really? and what are women who at 40 years of age have fibroids the size of softballs, bleed buckets every month and a uterus the size of a 6 month pregnancy supposed to do? Walk around like that until she is 50? 60? What if she bleeds to death in the process?
    Have you seen some of the outcomes of the "alternatives"...it makes me wonder if the medical profession who dreams up these other so-called "non-invasive" procedures (however wonderful they may really be) is behind all of this. It is just astounding what a death sentence they put the necessary surgery forth as...just to further their own hidden agendas...as I am sure there are hidden agendas.
    Sad.

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  62. I would not suspect the HERS of any harmful "hidden agendas"...?! Their dedication and goal is clearly stated and obvious: too many UN-INFORMED or grossly DIS-INFORMED hysterectomies, leaving damaged broken women, because of benign, otherwise treatable conditions.

    Perhaps there is some exaggeration in their anti-hysterectomy teaching but TOO much CAUTION always pays off, and such approach is better, more secure than jumping on to the operating table without full medical knowledge of the potential consequences.

    More harmful "hidden agendas" are clear behind the doctors and hospitals which perform the surgeries so eagerly.

    I am not the HERS worker. I am one of those patients who, if better informed, might have avoided the surgery successfully. The surgery has "turned me off" from normal life, well-being and left me with numerous undisputable, unrepairable damages... for life.

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  63. Really?...so you are saying that FEAR is the way to go? To traumatize people should be the standard of care? Seriously---there is always risks to everything in life...I suppose it is really possible to be hit by a bus if a bus comes through my living room wall...so I should not sit on my sofa in that case!!! I am sure that most women who have been harmed may find that some of this harm comes with the territory of aging and menopause in general. I am sorry you have been harmed but there is just as much harm to women that are so fearful of a life saving surgery that they decide against it and suffer just as many consequences. Medical science goes through all kinds of trials and errors...you know there was a time when cigarettes were prescribed for folks for all sort of maladies---imagine that! But to perceive doctors and nurses as bloodsucking vermine because they suggested something that does work for women is just plain wrong.
    If you are suffering from something and you seek medical care - there mus have been some reason - something bad enough that you agreed to have surgery because you believed there was a need but it didn't work exactly as planned - there could be so many factors contributing to that...improper skills of the selected surgeon...not following doctors orders...or maybe just something else that can't be understood --- is not a reason to generate a mass hysteria against it. There are plenty of examples of success and it is really just a matter of the spin of the wheel of life.

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  64. Oh and don't get me started on how much risk there is involved with pregnancy either---will you all join hands sing kumbaya and generate a campaign against motherhood too? Because after all there is plenty of malady there -- but imagine if women everywhere brought out all their pregnancy horror stories --- it would end life on this planet for good.

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  65. After reading this blog (and some other similar blogs):
    there is no balanced discussion, no communication on the blogs like that. There is no common ground, space or understanding between the women who are the fatal victims of unnecessary hysterectomies made for profit, and those rightfully happily cured by the life-saving surgeries. These are two completely different stories!

    There is NO good or use for both... to meet on this kind of blogs, to do what? to convince one another of ... what? and what for?

    Some of us want to share our pain, some other want to share their happiness. Just like you do not want to be disturbed in your peace and happiness, I would not like to be hurt more than I have been hurt by my surgery.

    I admitt, It was my mistake to speak about myself HERE, on the blog where my problem doesn't belong.

    As for the FEAR... Of course, it shouldn't be "the way to go", in no circumstances.

    But in my case the doctors' manipulation with my FEAR helped him to make me eventually sign the consent form for my surgery (fear of potential cancer from fibroids, death if the surgery will not happen etc.) but NO talk given about the other -DARK - side of the Moon. And in order to make the right decision, there should be also a conscious reakistic FEAR of the consequences of the surgery, if performed.

    There are the lucky women who got the warning message from the HERS on time, and avoided the abusive hysterectomy.

    There are also those whom the HERS have helped at least in a way to understand that they are NOT crazy after the surgery but suffering normal common after effects of the surgery, and telling them now they are "crazy"..., is abuse on top of abuse.

    But they should not tell their stories here, and similar blogs like that.

    I apologize for disturbing you in the wrong place, where my sad story does not belong and I disappear,

    I hope that the HERS will continue their job, anyway. It is not so difficult to understand their job and issues if you just could afford a little bit of compassion and broader mind, especially that you are obviously NOT a moron

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    1. There is no balanced discussion because HERS mission is in raising awareness surrounding hysterectomy incluidng the "practice" that results in the majority of surgeries being unnecessary and women being uninformed. But this post is written as if there was some kind of personal attack on women and is written via a public platform.

      Your comment that women shouldn't comment with thier personal tragic stories on this blog, but given that any woman googling on the topic of hysterectomy will run across this blog post, this is most assuredly an appropriate place to inform women of other women's experience - especially those who have actually gone through it.

      There is no balance in this post because it is concerned with HERS not providing assurances that hysterectomy is needed, necessary, safe and consequences are avoided by preserving ovaries or taking HRT. We have numerous organizations setup to advocate and expose unfair and harmful practices and HERS is just one of those organizations.

      I follow a couple of blogs and depending on the topic, the blogger will get responses from their usual followers or a great response for a controersial post. But these bloggers are mature enough to hear all perspectives as the purpose of blogging is to stimulate discussion.

      While one cannot google and find the number of deaths from lack of a hysterectomy - we do have a death rate for the surgical procedure hysterectomy and it's more than "one".

      Delete
    2. Anyway, this blog is clearly NOT about deceitful, unnecessary hysterectomies for fibroids. It is the blog about hope, recovery and the benefits of life-saving hysterectomy. It is very much "in conflict" with the stories that some women have presented here.

      There are many other blogs, specifically devoted to the issues of uterine fibroids (before and after the surgery).

      It is carelessly 'unwise' of the women who were 'lucky' to have 'only' fibroids, or hurt by needless hysterectomies, to bring their issues on the blog about just the opposite ... They can neither compare their feelings, share expierences, nor exchange the information.
      'You don't go to the dentist, when you need to fix your shoe, or vice-versa, do you?'

      Delete
  66. Let me tell you about MY TAH...intial surgery & then 3 repair surgeries within 9 mnths. My omentum fell out the last time. The omentum is part of your stomach. I commend HERS for at least telling women what can happen because it has happed to me. I didn't gain wait...I lost 84lbs! I'm 5'10 & weigh 108lbs. I still have problems. And I haven't found a doctor who will touch me to try to control the pain or correct the problem due too many hands in the pot as they might say. So HERS has every right to inform women what can happen.

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  67. Good on you Betsy for sharing your very detailed and personal experience. Having only glanced at HERS I didn't pay them much heed but after seeing them in action on this page ... OMG. It's shocking that women would do this to other women.

    There is no doubt that doctors are in it for profit and I'm sure hysterectomies are needlessly scheduled each year. As are many other surgeries. However, that's not a reason to fearmonger.

    Don't trust God and don't trust Science. Trust yourself... do your research, talk to your doctor about YOUR specific circumstances and needs. Put it all on the table before you have major surgery for any reason. And sleep on it for at least a week. And then make the decision that is right for you - an informed decision.

    Cancer is a nasty disease Betsy and I hope you nailed it. Best wishes to you for the future and keep the high moral ground with these loons. Your blog will come off the better for it. Peace out.

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  68. I have PCOS, which caused one cyst-laden ovary to be removed when I was twenty-five. My gyno did his best to maintain what fertility I might have, but I suffered outrageously heavy bleeding and pain for another twenty-five years, until I developed a cancerous endometrial tumor and underwent a complete hysterectomy and removal of the remaining ovary.

    Best medical event ever to happen to me. I feel well at last, have lost, not gained, weight, and have a thoroughly satisfying sex life, with big, bouncing orgasms and everything.

    If HERS had its? way, I might not have a life at all. The fear-mongering is bad enough, but their implication that women can't possibly be complete without their uteri is downright misogynist. So, having had my ovaries removed, for the rest of my life, if I should experience depression, or weight gain, or wrinkles, I should ascribe it to my operation? How about simple aging, and gravity? And btw, do I have any agency of my own, or can I blame any subsequent tendencies to petulance and whining on my missing uterus?

    There are, sadly, no guarantees of success for any surgeries, and to agree with the above commenter, it's vital to have as much information with which to make your decision as possible. But not MISinformation, such as that promulgated by the ideologues at HERS.

    What is motivating these women, I wonder? Perhaps those who have had bad outcomes are both driven to warn others, and need to feel that there was some malevolent force, such as the profit motive, behind their gynecological woes. It's very hard to consider that sheer CHANCE may have caused them problems that other women won't have.

    I actually got a great deal of help from a site that was both too cheery and consumerist and way too pinky-girlie for me, but the women there have a huge amount of information on exactly what to expect, and I recommend it: hystersisters.com. They are an example, like your site, Betsy, of what genuine support is like.

    Thank you for this honest post. HERSlings, I'm sorry for your troubles, but with your extreme and deceitful tactics, you are not even helping the cause of lowering the number of unnecessary hysterectomies performed.

    Kathy, eighteen happy months post-hysterectomy

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    Replies
    1. I participated in hystersisters for awhile but I was annoyed by their moderators. Lot of great women there but I don't think the mods believe in freedom of speech over there. Ugh. But I did meet some nice ladies. Yes, definitely more on the consumer side.

      Delete
  69. Thank you so much for this post. I am scheduled for a hysterectomy in 2 days and was starting to get cold feet because of the crap posted by HERS. My mother had a hysterectomy years ago and she said I would feel better afterward. I have a 3rd degree rectocele, a cystocele and uterine prolapse with pain and heavy bleeding. I am looking forward to a life without pain and without spendin at least 2 days a month in bed. Since I already have the urine leakage, fecal leakage, and body parts falling out that they (HERS) warn about, how much worse could it get, right? :) Thanks again for the encouraging words.

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  70. Thank you, Betsy. I'm waiting for a hysterectomy for submucousal fibroids, causing severe bleeding and pain. I've tried several other options to prevent surgery, but to no avail. I stumbled across the HERS information and was appalled. They advocate risky procedures over hysterectomy but don't explain any of the risks. For instance, a myomectomy increases risk of hemorhage and should only be done by an advanced surgeon and for the purpose of having future children. Myomectomy also morcellates the tumors, so if cancerous, it basically spreads throughout the systemic circulation and the patient basically does not survive once that happens. These things are not mentioned on HERS website. So, I'd say, no it does not provide information to women. It's an atrocity.

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    1. Exactly. Also, in my case I had way too many fibroids that no way could I go the myo. route (far too risky and I wouldn't be able to get pregnant even if I opted not to have a hysterectomyI would have been a miserable human in pain 24,7) My OBGYN shared with me that women with multiple fibroids that have them removed via myo., they have a greater chance of developing fibroids down the road. I have done a lot of research over the years about fibroids so I did not go into my hysterectomy blindly.

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    2. I appreciate the opportunity to share my personal experience. My situation is complicated and my decision is not one of choice, but one of necessity. I have suffered severe fibroids for the past four years. In 2003, I had my first surgery to remove the fibroids and they returned four years ago with a vengeance. My bleeding is extremely severe and the pain is unbearable. I have pain even when I am not having my periods. I constantly have a general heaviness and pressure in my lower abdomen and lately I have been feeling this huge hard lump in my lower abdomen especially when I am laying down at night. I cannot even lie on my belly because I can feel this ugly lump pressing so hard and it's so uncomfortable. Sometimes it almost feels as though my entire uterus is going to come out.. It is unbearable. My doctors suggested that because there were too many fibroids (9), and some of them were really big, the best option would be to have a hysterectomy. I also did a lot of research about fibroids. We scheduled the surgery for November 2012. A few weeks before my surgery, I came across the HERS site and was extremely scared. I canceled my surgery. I decided I was going to look for other alternatives. I changed my diet and started to exercise on a regular basis with the hope that by some miracle the problem would go away.... but it did not. I also did not find many options especially for those of us with numerous fibroids. I still bleed heavily and the pain is still unbearable. I am now officially anemic , very little energy and constantly weak and exhausted. This condition is controlling my life. I miss three to four days of work every month because I have to lie down at home in pain and severe bleeding/flooding. Most recently I missed an important professional conference because I was bleeding severely, in pain and was unable to travel with my colleagues. It is terrible. Last year 2012, my mom suddenly fell ill. I could not immediately travel because I was bleeding severely and in extreme pain and could not see myself on the plane for several hours. I waited till I was in a position to travel. She passed two days after I arrived. I cannot live my life like this anymore. It's unbearable. I am going to follow my doctors advice. Is that the best decision? Right now it seems so much better than the alternative. I pray my life will be somewhat 'normal' after the surgery.

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  71. Bless you Betsy! These folks at HERS are INSANE! They are extremely hindered in the critical thinking department.
    If I succumbed to their terror campaign I'd be writing off all the fabulous benefits I have enjoyed since my hysterectomy: freed bladder, bowel - well that probably won't last because, of course my pelvic floor will eventually collapse, as well as my lower back, and I'll be reduced to a scared little victim shivering in the corner destined to spend my remaining golden years in dark agony. And the wonderful orgasms I now enjoy will surely cease when I sink into that DEEP depression!
    Oh shucks, I forgot - from now on I should definitely blame every little ache and pain and bad mood and mishap in my life to BEING BUTCHERD because I am just another VICTIM. Thanks for listening. I feel SO much better now. :)

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    1. Renewed, you summed it up perfectly about HERS: terror campaign. I hear ya with the freed bladder and no more bowel issues and my stomach actually doesn't look like I swallowed a hug basketball anymore.

      I've never felt better since I had my hysterectomy -- almost one month and doing very well with my recovery -- and at 40 years old, I have lots of living to do. :)

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  72. Forget HERS, check other sources, careful judgment, precise diagnose, may be this information some may find useful

    http://jnm.snmjournals.org/content/49/5/708.full

    Uterine leiomyoma is a common benign uterine smooth muscle tumor (USMT) that occurs in 20%–25% of women over 30y of age. The management of leiomyomas is dependent of patient age, symptoms and clinician skill. Determining the indications for surgical treatment requires careful judgment. Uterine leiomyoma is an indication for approximately 30% of all hysterectomies performed. However, approximately 80% of hysterectomies performed for uterine leiomyoma are judged as inappropriately recommended because of a “suspected nonbenign tumor” based on tumor size. Thus, differentiating benign from nonbenign USMTs is one of the most important clinical problems. As preoperative histologic examination of myometrial lesions is not possible, imaging plays an important role in evaluation of myometrial lesions.The usefulness of an MRI in the workup of USMTs is well known; however, even when using MRI, it is difficult to distinguish between leiomyosarcoma (LMS), a rare neoplasm that is the most common and aggressive malignant USMT, and leiomyoma, particularly when degeneration is evident. Increased uptake on PET with 18F-FDG PET has emerged as a promising oncologic imaging tool.

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  73. I had a hysterectomy after fighting doctors' suggestions for 4 years after years of frequent pelvic pain. Did some online research, found online groups supportive of surgical choice. I glanced at Hers Foundation and found it was too radical and inaccurate so I haven't read much of it.

    The major inaccuracies of the Hers Foundation confuse "symptoms of hysterectomy" and "symptoms of menopause." Every women who gets to a certain age is going to have symptoms of menopause. That's life. If they have a hysterectomy before their 50s, those same symptoms are going to be sooner.

    Sure, my hysterectomy was elective - I didn't have cancer and I wasn't hemorrhaging. Yes, I have a third scar, to go along with the previous two for previous cyst surgeries. But, I've felt better than I have in years, and not having frequent cyst/fibroid pain is a big win.

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  74. I do not feel any relief after my hysterectomy. I would rather have my painful periods back than all these menopausal symptoms and celibacy

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  75. I find scare tactics do nothing but cause fear which is unnecessary. If one's surgery causes post op issues then maybe they should investigate their surgeon prior to having surgery instead of blaming the procedure. Here in the UK they do not just rush in to hysterectomies, and will try any other treatment first to alleviate symptoms unless of course in the cases of cancer. As for personality changes etc, what a load of hairy bollocks, this may have happened post menopause anyway or any other lifestyle or life changing events, in my personal opinion.

    My mother had a hysterectomy 30 years ago and she never changed in personality or had any other life changing disorders that HERS states.
    I found myself facing a hysterectomy a few years ago after spending many years suffering from severe cramps, heavy bleeding and bloating so bad that I looked 6 months pregnant. I was misdiagnosed with IBS for 5 years until I started keeping a record of when the bloating and bad cramps occurred and it was period related. I was referred to a wonderful gynae who took the time to go through all my options with me for my diagnosis of adenomyosis. He stated that he personally found patients with this condition did not benefit from hormone treatment to alleviate periods i.e. Mirena coil. He thoroughly discussed my options with me and it was up to me as to whether to go ahead with the surgical option of a hysterectomy, leaving my ovaries behind. 6 months later I had my hysterectomy which went ahead without problems, and histology confirmed the suspicion of adenomyosis. However I did suffer from severe adhesions 5 months the developed adhesions had ripped a hole in my bowel which required emergency surgery resulting in a temporary colostomy but I do not blame this on my hysterectomy alone, I had previously had an appendicectomy.

    I have not suffered from loss of love for my children, nor did my personality change (just like my mother), I have the same amount of energy now than I did before my hysterectomy, in fact I now have more energy and still play a lot of sport and I am 47 and 2 years post-hysterectomy now. Many other women I know who have had a hysterectomy feel the same way I do and feel that their hysterectomies have given them their lives back.

    There is always a risk with surgery no matter what that surgery is. Also the outcome of surgery is more likely down to the surgeon's skill and experience. Maybe those that have had bad outcomes should possibly look at their surgeons rather than the procedure!! Just saying

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  76. I too changed my surgery after seeing the HERs video. Another reason was that my female gyno used the word " chopped" to refer to the removal of my very healthy cervix. I have a 5cm fibroid. My heavy bleeding comes every14 days and lasts for about 5 days. It's bad. I am weak I am anemic. Severely anemic. I already have the symptoms of early menopause. Varying degrees of depression or moods swings if you will. Sweating, freezing, chills etc. and I still have my uterus ovaries and cervix. So I really cannot blame a hysterectomy on the way I feel. I am 5'10 and 158. Healthy. I went for a second opinion and my wonderful Dr. Said it was my decision to keep or remove whatever body parts I wanted . He recommended a myomectomy to remove the fibroid but also warned my that a myomectomy also has huge risks of bleeding. This is a true fact. We spoke about the removal of my uterus which he feels is a good idea because I will never have to worry about having another uterine fibroid tumor . This is also a fact. I will not have the hemoragging or pain. But ... But he also told me that he will not remove my ovaries nor my cervix because it is not needed. My cervix will be needed to help my vagina remain " intact" . I am paraphrasing. My best buddy has a hysterectomy, full, 5 years ago. She is the most loving , kind , sexual and fun person in the world. She has loads of sex, not bad for a 49 year old, and loves life. Some days she is a bitch , but aren't we all to some degree. I will miss my uterus, but the prospect of having another fibroid grew is a reality. I love my two children but must face the fact that I will not be having anymore. I have already done the midlife crisis thing.. So that is over. I guess what I want to say is.. Be informed but make your own decision. God bless and trust your instincts. Oh by the way.. I will. Totally miss my uterine contractions after an orgasm.. But eh... I am good with that. Xxoo

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    1. You are right, trust your own instincts and feelings about it, and don't let anyone make or force you to do what you feel is against your self or too tough on you. It's the best tactics to follow in all decisions, if you are lucky to have the choice. No one can tell the other, 'go ahead with it because I'm fine, so you will be fine as well'. We are different, some will just say goodbye to her 'divine uterine contractions', and for another it is the end of the world, depression, and depression is a huge problem, do everything to avoid it

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  77. Betsy, I am SOOOO overjoyed I found your blog (loved what you wrote about sex and having an orgasm post-hysterectomy). Thanks for taking on the HERS Foundation and HERS Foundation, I hope you hear me loud and clear.

    I doubt the HERS Foundation will publish my comment on their blog so I thought I would share here (I gave a shout out to your post!) I worked in public health for a long time and worked with cancer patients so I am not a complete idiot when it comes to the public health community, especially concerning women's GYN health.

    OMG I am SO tired of this BS from the HERS Foundation and it infuriates me--why I wrote this response:

    The HERS Foundation should be ashamed of themselves - another wannabe "medical" organization that shouldn't even have a non-profit status. You have ZERO medical authority to be touting scare tactic BS to women about hysterectomies. The information you present on your website is both dangerous and you need to get your facts straight. The way you present your information is negative and it sends the message that women are idiots and can't think for themselves. Do you know how many women NEED to have hysterectomies to save their lives? Have you ever heard of cancer???? I recently had a hysterectomy and I've never felt better. I feel happy and my healing is going VERY well. I have my life back and I don't feel scarred or damaged, and how DARE you tell women that hysterectomy is going to ruin their lives. Women suffer for years with horrible pain and bleeding and have NO quality of life. That's no way to live - in pain all the time. Not to mention, it is not your place or right to tell a woman what she should do or not do with her body. I worked in public health for a long time and your supposed foundation disgusts me. I wish someone would shut down your funding because you are doing a horrible disservice to the public health community concerning educating women about their GYN health. Instead of hands off my uterus, hands off MY choice and MY body! My body, my choice and that includes MY decision to choose to have a better quality of life for myself. You don't know me or my circumstances or any woman's circumstances who decide to have a hysterectomy. Women aren't idiots! I did my research--you know, scientific, medical research and got plenty of second opinions. In no way, do I feel like damaged goods nor desexed NOR castrated--those are the most vile words you could possibly use to scare a woman--shame on you. Absolutely disgusting and I feel bad for the women who actually believe this craziness you tout on your site. Beyond irresponsible. And I'm not the only one who thinks your tactics and methods are bad news. Not all of us are drinking your Kool-Aid. Betsy B. Honest feels the same way. http://honest2betsy.blogspot.com/2011/03/open-letter-to-hers-foundation-on.html And the last time I checked my vagina wasn't ballooning out or hanging down my legs!!!

    February 13, 2013 at 12:15 PM

    And it really pisses me off that HERS lump all women and their health needs into one category. I agree with you, Betsy. HERS' information and "statistics" are completely skewed and their org is detrimental to the public health community. I have NO idea how they can keep their non-profit status. Public health doesn't mean falsely leading on women with skewed, detrimental health info! Yes, women need to do plenty of research before they make ANY decision to have ANY kind of medical treatment. I had long conversations with cancer patients who opted not to have chemo and radiation. I may not have agreed with them but once again, their body, their personal choice.

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  78. I find it ironic how you and some of your other followers feel compelled to bash HERS saying they give false information yet are you all medical professionals? Have you spoke to the thousands of women who have been adversely affected by a hysterectomy? Im not a medical professional either but I can say that the main problem is that some doctors do NOT provide accurate information about adverse affects of hysterectomy and other possible treatment to allow women to make an informed decision. I was told I had a disease and the only was to treat this Disease was to do a hysterectomy. When I asked about my ovaries , I was told they are only a cancer risk( I had none in my family) so I ended up with EVERYTHING out. My life has never been the same since.I have had surgeries to repair damage, take 3 tyoes of hormones, countless vitamins, and antidepressents , I have been subjected to humiliating physical therapy to stretch my vagina. Sex is so painful , I cant even stand the thought of having it, yet I want to be with my partner so badly. ( weird isn't it) but guess what, I had to listen to the therapist give me the talk about how there are other ways to make love becasue sometimes these things cant be corrected,yet another humiliation!! So Betsy, I hope your still feeling well and living a wonderful life full of energy ! But many of us are NOT. If I had found HERS it would have made me ask better questions and look for another opinion. Maybe I wouldn't be in this physical shape I am today. I am so happy for you that a doctor gave you sound advice and it SAVED your life, But understand something, my doctor gave me an hysterectomy that now will probably end up KILLING ME!! Yes I'm a woman but not the same woman I was 3 years ago ! I put a fake smile on everyday and deal with pain everyday! I get so sad because I will never now how it feels to wake up without pain again. I will never know how is feel to make love to my partner again! I try to figure out if the hormones I take will end up hurting me in the long run. I feel as if I cant live without the hormones and antidepressants. (My partner almost left me because of my erratic behavior after surgery) I am now more prone to heart disease, breast cancer,high cholesterol, high blood pressure, weight gain, depression, joint pain and all sorts of other things. OH and ya had I read HERS I would have been aware of these dangers and could have made an informed choice. Maybe then I would have MY LIFE.

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    1. This is MY story, too. Hysterectomy shortened my life, and the rest of it has become just as painful

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  79. First I will say that I am not connected with the HERS Foundation and had never heard of it until around a year ago when I was trying to find on the internet whether there were other women who felt the way I do following a hysterectomy. I had a total hysterectomy (oophorectomy) in 1993 at the age of 44 following a diagnosis of uterine fibroids. They were large and very hard and were causing many problems, as well as heavy bleeding. Following the operation the surgeon advised me that I was riddled with endometriosis - one of the worst cases he had seen. Following the operation, I initially felt OK and relieved not to have the heavy bleeding and pain. However, despite having been put on HRT instead of feeling better over the following weeks I felt worse and worse, tired and weak. I struggled on before being diagnosed with an underactive thyroid, which I understand can sometimes be triggered by surgery. After 9 months I gave up the HRT as it was doing nothing for me.

    However, the most unexpected thing was how different I felt as a person, I had no sexual feelings at all, I'd always had an excellent memory but that had gone. I just felt totally different, it was as though my personality had changed and I'd become a different person. Over time I saw many doctors and therapists, some helped some didn't but I came to terms with the change up to a point and got on with my life.

    However, things changed about three years ago when I met someone and regained some interest in sex. It was then that I found it would be virtually impossible for me to make love to anyone. When I first had the surgery and had no desires or feelings this would not have mattered, but now I have the feelings but not the ability to have a full relationship. I never thought to ask about this at the time of the surgery as I was not in a relationship at that time.

    I would add that my mother had had a hysterectomy and she had nothing but praise for the procedure, so to feel the way I did afterwards was completely unexpected a complete shock. If I could have carried on, even with the painful and heavy periods and discomfort I would have, to be the person I was before. But equally, life must go on and I have to try to come to terms with how I will be for the rest of my life, but it is very hard and for me finding the HERS foundation website and other people who have suffered in the same way made me feel less different less isolated. Incidently I feel that I am like a husk,I used that word when I thought about myself before I saw the HERS website. The problem is that there is nothing to show on the outside the emptiness inside.

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  80. I am very empathetic to those women who have suffered issues as a result of their hysterectomies. I agree that women should do their research and get second opinions, but HERS Foundation is not a viable medical source and their "facts" section is an absolute joke. They do not list any medical resources in the facts section to back up the information they post on their website.

    While I'm not a medical doctor, I worked in public health for a long time and I worked with cancer patients who underwent hysterectomies due to cervical and ovarian cancer. These hysterectomies were life-saving for these women.

    Personally, I sought many opinions over the years, did my own research on fibroids, and even sought out Eastern and alternative treatments. I dealt with very large fibroids for 10 years but a few years ago I started to experience a lot of health issues and felt horrible - my quality of life had gone downhill and I was tired of carrying around a 6 pound uterus that made me look like I was 4 months pregnant and caused me a great deal of pain.

    A hysterectomy was the best choice for me. It's sad that people point the finger at doctors and blame them. Doctors aren't out to "kill" their patients--there are excellent OBGYNs out there (including my doctor) who truly care about the well-being of their patients and aren't surgery-happy. There are always going to be good and not so great doctors, but as a patient, it is up to us to take responsibility for our health and seek second and even third opinions. There is a lot to take into consideration before having a hysterectomy.

    Luckily, I was in great shape before my surgery and I bounced back and am still bouncing back...and that was after an abdominal hysterectomy. I thank my years of yoga and exercise for how strong I was before my surgery which has helped with my recovery.
    As a former public health professional, I feel the HERS Foundation is doing more damage than good concerning women's GYN health. Also, the women who started HERS are hardcore "activists" and are not medical doctors. I'm so tired of this scare tactic approach to "shame" women into thinking they have made a wrong or bad choice about their bodies because they make the choice to have a hysterectomy. My doctor didn't stick a gun to my head and was NOT forced to have a hysterectomy and I don't regret my choice.

    I find it ironic that these self-proclaimed feminists are telling women what they should or should not do with their bodies. Isn't that what the pro choice movement is all about? Women should have the the right to decide for themselves what to do with their bodies--and that includes the right to have a hysterectomy.

    I don't know how their organization is structured but I would be curious to know if they have any American Medical Association OBGYNs backing their organization?

    I am truly sorry for those of you who have experienced complications as a result of your hysterectomy and my heart goes out to you. I just don't believe in what the HERS Foundation is touting and I don't like the way they disseminate their message. Hysterectomies have saved women's lives, and there are two sides to every argument.

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  81. I am not connected with HERS either but found it five years after my hysterectomy, suffering all the negative changes since then, unaware why, except for my loss of sexuality which was obvious to me without any need for further debate or explanation. This much I have known to begin with, my sex organ was removed, but other complications I could not explain. The more you find out about the female anatomy and the surgery, the more obvious becomes why one can not properly urinate after the surgery, and what they sometimes call "complications" may just as well be considered as normal predictable consequences of the specific surgery.

    No medical professional, including my gyn and hospital staff, had ever informed me, before or after my hysterectomy about any of the possible "complications" which I have been going thru since then. My surgery was elective and has ruined my health, my professionallife and my love life.

    Heavy periods and painful menstrual cramps was not a problem from my perspective, when I compare my quality of life with those, and my present condition post-op.

    Therese, it is not the matter of your "believing or not" how other women feel or not. Too many women with fibroids, endometriosis regret to have undergone hysterectomy, so to silence HERS completely and discard the information they make public, would be detrimental to quite a number of women with the fibroid problem. HERS does not "make up" the information. The basic knowledge on the female anatomy and how the female hormones function can be found in any student's medical handbook or medical articles. If you are not a med student or MD, you can pay for the network access to those $20,30,40 or can go to the medical school library and learn the same. HERS has poor access to good materials on the subject. In fact, there is much more to know and learn than HERS is providing.

    On the blog dedicated to cancer issues it is not the right tactics to dig into the matter at all, but approaching fibroids is a completely different matter.

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  82. Thanks Betsy. I will sleep tonight. If I hadn't found your blog I might not have. I have 4 fibroids, the largest being 11cm. My doctor recommended a hysterctomy and my symptoms have impacted my life enough that I'm very open to the idea. I will do more research and get a second opion but my gut (no pun intended) says that's where I will end up. And I feel good about it. Tonight I was reading around the internet (always dangerous when it comes to health issues I think) and I ran across a HERS blogspot "Hysterectomy - The Experts Speak Out." Wow was I totally freaked out!?! When I googled HERS foundation I ran across your blog first, lucky me. They are whack jobs. I understand some people have bad outcomes but their reaction to you is what strikes me and causes me to trust nothing from them. The fact that I'm using the term "them" speaks to the lifeform they have taken on. Not individuals with something to say but a movement...them. It's creepy how they are. It's Evangelistic. So thank you. I'm going to do my Castor oil pack now, sleep well tonight, talk with my naturpath this week, get a second opion, make an informed dedcision, and feel really good about it. I'm confident my outcome will be good. Now, I'm done with the internet research. Thank you Betsy for you voice of reason and HERS for saving me from wasting more time reading opinions on the internet.

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  83. Hi Betsy. I came across your blog post a couple of years too late, after following a link from the forums on the Hysterectomy Association website. As it happens I'm the founder of that particular organisation. I also work with NICE as a specialist advisor on heavy menstrual bleeding, so I'm not a nutcase. I wanted to reassure you, and your other visitors that our research shows the majority of women have no problemwiththeir sexuality ororgasm post hysterectomy and that the vast majority would do it again if they had to. The most frequent commentI get is 'I wish I'd done it sooner'. I had a hysterectomy at the age of 32 and I'm now in my 50's. I'm told I look 10 years younger than I am, I'm fit healthy and have a wonderful sex life with the man who thinks I'm beautiful and sexy. The key to coping is information, when you have the right information for you particular needs, you tend to make the decisions that are right for you, whatever they may be.

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  84. Your photos are lovely Betsy and well done on making the right decision for you.
    However, what I can't understand is why you have attacked the HERS Foundation in such a manner no matter how frustrated you feel because in my view they do not deserve such bad comments.
    The HERS Foundation help many many women, and for those women who do not like their info and find it unhelpful, maybe they can just pass it off as not right for them without such cruel words.
    As a young woman I defied the odds when a specialist told me that hysterectomy was my only option and I was childless...I wish I knew about the HERS Foundation support then as I went it alone on my gut instinct that it wasn't right for me.
    I now try to help other women to avoid surgery if possible, but if they came to me and said that they were still going through with it then I would eventually have to take a back seat and let them do it and not lose sleep. I am sure that the HERS Foundation would do the same.

    I feel that it would be really good if someone brave enough and with it enough established a worldwide Foundation/charity in order to raise funds to research all the reasons women have to have hysterectomies and help provide better treatments or cures for the conditions...with many women getting together worldwide in support of it because isn't it up to our generation to leave a better legacy for the next generation. My friends mum was the same age as she is now and because her daughter has the same problems, her mum has advised her not to have a hysterectomy because she has regrets.

    I wish you well Betsy, but also the HERS Foundation in their campaign to continue to help others.

    I have had heavy menstrual bleeding in the past and am now careful with high estrogen foods so do not need the NICE guidelines on a hysterectomy association website, although i'm sure some do.

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    1. Shame on whoever put this here as women should be able to have children and not organ removal/surrogacy.

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  86. Whenever I read information that I think is designed to frighten or manipulate, I ignore it. Whenever I read information that is hysterical, angry, or vitriolic, I ignore it. I look for measured, level-headed, honest, objective information presented with facts to support it. To all the above posts in the first two categories I've mentioned, good luck with your life and God bless you. To all the posts in my above-named last category, (factual, informative, measured, level-headed, honest) thank you for information I can use without wasting my time on hystrionics.

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  87. Wow! What a great blog! Been reading the posts late at night here at home (my wife just had a medically necessary Hysterectomy this morning) and I have to say it has been quite entertaining! I ended up here after I watched the HERS video. Less than 3 minutes into it my "Activist wackos" radar was going off so I did a search on the HERS organization. Hilarious to see the wackos go into overdrive (and then try to justify it by admitting that they have a dedicated system warning them whenever someone says something about them on the web! LOL! I also have to say that pretty much everyone of the "anonymous" posts on her defending the HERS group has the exact same phrasing and language! My "Activist Wacko" radar has kicked into overdrive.

    Thanks you so much for your blog and calling out HERS for what it is. I can't say I was freaked out by their video because it stunk of BS but this sight definitely helped me to confirm my suspicions... Not just because of what you posted but from the reaction from the HERS people attacking you and how it was done. Thanks again and to the HERS wackos I only have one thing to say... My wife and I also vaccinate each of our four children! OOOOooooooooooh! LOLOLLOLLOLOLOLOL! Ah, who am I kidding, they quit reading my post as soon as I revealed I was a man! LOL

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  88. march 26th comment and onwards ? oddd and suggests 'nutter of a person becoming big with words'.

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  89. Well done hers foundation...some women who are involved with 'caring group' da
    re not tell group that hyster didnt work for them.

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  90. Thank you, Thank you, Thank you and Thank you for exposing these people!!!!! I just ran into this blog AFTER i emailed the HERS foundation and told them that their website was the most discouraging and depressing thing I have ever read in my life and that if things turned out the way they suggested I would most certainly not feel like was worth living.

    I am 46 years old; done child bearing but certainly not done having sex, diagnosed with cervical cancer (hopefully Stage 1A2 or 1B). I will get a radical hysterectomy including my ovaries and part of my vagina :((((( this Friday. I am petrified of the cancer and pray they get it all but I am equally petrified of the after effects, sexual and other possible complications all of which I see on those negative websites.

    I have heard several women actually recommend hysterectomy saying it was the best thing they ever did. However they had a regular hysterectomy and did not lose their ovaries or part of their vagina.

    So my main fears are the ovaries will crush my desire and the shortened vagina will make it painful and not much fun. I think these may be legitimate fears but hopefully not as bad as HERSfoundation makes it appear.

    I will try to keep a positive attitude and thank you again for posting this blog!

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  91. I have read the HERS website and seen the video/read the pamphlet. I have spent many years doing endocrine research and I can not agree with what HERS is saying. The fact that the research/polling was done using a very small pool of women from the HERS website stood out as problematic to me as well. Fear mongering is what comes to mind when I see the HERS video. It leaves out vital information to confuse women and it does it to make money imho which is highly disturbing. I'm all for educating women about their bodies and medical choices but the HERS foundation is not doing that. Empowerment is not fear.

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  92. thank you to HERS.

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  93. I do not find the HERS website fear mongering. They do not tell you hysterectomy "may kill you". They say you may have problems. The problems I have suspected I might have, by looking at the female anatomy, by common sense, with no acces to HERS

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  94. in Great BritainJune 3, 2013 at 2:21 AM

    http://www.fibroidnetworkonline.com/modules.php?name=News&file=article&sid=42

    Quote: Mrs. Diana Organ UK Labour Minister of Parliament for the Forest of Dean campaigns on the the issue of hysterectomy services in the UK, following concerns raised by her constituents. Concerns range from the lack of information, advice, counselling and guidance about the procedure and its after-effects, to the treatment offered, surgery involved and after-care, and to the attitudes of some members of the medical profession towards women receiving the treatment.

    " there was a disturbing pattern of anger at the manner of their treatment. They were not ready for and did not expect what happened to them, and all complained about a lack of information and advice. They were often told that the procedure was the only option. The exact nature of the surgery was not clearly explained to them, so there was a general feeling of a lack of informed consent. Only one was given a leaflet, and that was in relation to a hysterectomy many years ago.

    A loss of libido was common, and a side effect was a change in their sex lives and lack of satisfaction with sexual intercourse. There were acute menopausal problems, incontinence after the operation and lower back pain. Unfortunately, most of the women did not complain at the time through the normal complaints procedure, because they felt beaten down and decided that it would be useless to try to take on and fight the whole medical fraternity.

    The women in the group did NOT have hysterectomies because of CANCER...., the reason was heavy periods, and some had ovaries removed as well for that reason."


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  95. Overall, worldwide the problem does exist, and it does not pertain only to "hystrionics". I advise the women with the fibroid hysterectomy problem, stay where your problems belong. I don't find Betsy's blog appropriate space for it

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    1. I do find it the right place and very interesting...thanks fibroid network.

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  96. Some women may have issues after a hysterectomy and some do not. Every Woman has a different set of circumstances and outcomes are not always the same. That said, the HERS foundation disgusts me. Scare tactics and ridiculous "facts". If your contemplaTing hysterectomy, the best place I've found is hystersisters.com you can see both sides of possible outcomes, and interact with other women who've had a husterectomy, or are facing one and even women who are trying alternate options.

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    1. And yet i wonder if you ever get the full story as a lady i worked with had hyto with poor results and bad temper.

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    2. So glad to hear that Hystersisters are encouraging discussion regarding alternative options and trying to help women not to have organ removal like HERS have been trying to do for many years, but how many women who access Hystersisters actually do go on to have organ removal instead of trying the alternatives and why is this -
      Peer pressure, persuasion, resignation, belief that surgery is going to be the end result anyway which may not be true, impatient to try several alternatives first?

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  97. hyter that is - family went on trip and bad time due to mums hormones.

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  98. becareful of those such as hyster sisters...be proud to keep your organs if you can?

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  99. HERS info may be old but their research based on info women gave them is so important and so still applies.

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  100. Hysterectomy for fibroids has become out of date case story or a problem. In the past few years therapeutic treatment of fibroids has improved, in surgery and farmacology. Todays methods of dealing with this problem don't require removing uterus, except some specific cases.

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    1. But what's causing the fibroids is what we need to know???

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  101. Thank You for this Betsy. I am positive that you have put countless women's minds at ease. What the HERS foundation is doing is beyond despicable, it is immoral. Thank you for trying to spread the truth not more fear.
    And to the HERS foundation: exaggerating the worst of the worst experiences of a small percentage of women is not truth, it is fear mongering, plain and simple.
    However, I suspect that the few women that have had these experiences are quite understandably traumatized by them and find comfort in sharing these experiences with other women, and in feeling that they are not alone. However, they are misguided in believing all women will share in their experience and therefore feel they need to warn all women of the so called "inevitable" trauma that will result from their own hysterectomy. Sorry ladies, but this is just wrong, wrong, wrong, no matter what kind of slant you try to put on it. I am Not buying it for one minute, but shame on you because unfortunately some terrified women will.
    So again, an enormous Thank You to you Betsy, we need more logical, intelligent viewpoints such as your own on the www.

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  102. Logical/Intelligent viewpoint did you say?
    Do not forget the countless women who HERS have helped.

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  103. Hello

    I'm not with HERS, but I've dealt with them, and did not have your experience.

    I've had such test results, but I refused hysterectomy. I'm not here saying you did the wrong thing, just would like to put it out to your readers that there are options, even with such scary test results.

    There are two possible lesser procedures that are much less invasive both which would leave child-bearing capabilities intact (Whethere one would get pregnant is another matter).

    I'm not with HERS. I'm just someone who's been where you have, twice now, and still am intact.

    At age 37 I was told by a gyne oncologist that I was going to die a horrible death if I did not have a hysterectomy. I refused. It took three other gyne consultations to achieve what I had learned might be possible for me. I had a conization of my cervix, quite large in fact. A surgical removal of most of it. Life went on. I still menstruated, and had a normal menopause many years later at the usual time.

    Still no horrible death, at age 64 I was again disagnosed with a "pre-cancerous" condition of my endometrium, many smaller fibroids and a couple large fibroids, and endometrial hyperplasia with atypical polyps.

    Again I refused hysterectomy. I had email consultations with Dr. Parker at UCLA (arranged through the wonderful now deceased wormen's health researcher and advocate, Barbara Seaman) corroborating what I had again learned might be an alternative for me. I also consulted with HERS, among others, each time hearing what I already knew, but I wanted to make sure.

    I asked for a myomectomy, instead of hysterctomy.

    "We've never done that on a woman your age" said the astounded gyne whom I had chosen to do the surgery. "We do it on younger women who want a chance to have a pregnancy first", before they are hysterectomized.

    Nonetheless, I had it done, at age 64. Myomectomy, two D&Cs six months apart, with a course of progeserone, inbetween, scraping of my endometial tissue. Since then, no bleeding no cramps and normal paps. I am now 71.

    Someone else with the same condition to me might have made different choices. I would just like to be sure women know that there is not one solution. I feel I made the best choice for solution that reduced the risk of ovarian threat. I

    Thank you for letting me speak of my experience.

    "Canada"



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    1. I watched a friend die of cervical cancer. She was in her 30's and it WAS horrible.

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    2. I wish we could all get together and find a pill not organ removal...perhaps one day they will.

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  104. Your summary of HERS is scandalous betsy and sums up your overboard character.

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    1. I agree and 'overboard character' sums what betsy has put/done exactly.

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  105. I am thankful every day that I chose not to have a hysterectomy which I was told was the only option I had and it was not. I would recommend to any women to try not to see it as a quick fix or listen to others who may press on you to have surgery and do your research first.
    I have read the info on HERS with interest and it has helped me greatly.

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  106. HERS are too classy to say that anyone is an 'asshole' and are helpful to those who respect them.

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  107. My name is HELEN and I’m from the United States.I’m writing this testimony to tell any one who needs help No matter if it’s help for love,money or anything else there’s only one place to go to get this help there’s nothing to big they can help you with whatever your problem is. I had contacted them to get some help the oracle was very understanding in my situation and my problem the oracle told me everything I had to do to get this help and what was required of me,the oracle was always there to answer any question I had and was always quick in responding to my questions or any problem I had. They will be there for you every step of the way and will be by your side for as long as you need them. The oracle will solve any of your problems and get you the out come you deserve and want. If you want your lover back or you need help with any other situation all you have to do is contact this email address and ask for help.They are caring and understanding and will help you every step of the way.I never believed in magic or that there was anyone who could help until I contacted this email dragbonslovespelltemple@hotmail.com.if u need help this is the email to contact. dragbonslovespelltemple@hotmail.com

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  108. Replies
    1. Thanks HERS for helping me to see I made the right deicision...im a happy missy,x

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    2. HERS info reinforced my wish not to have surgery and im a happy missy.x

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  109. HERS would have t be the largest pile of BS I have seen in my quest for information on my up and coming hysterectomy.

    HERS does not offer a balanced point of view in the biased information they have available. They offer one point of view only, and that view is that all hysterectomies are wrong.

    Their ridiculous video was so clearly scare mongering that I turned it off but it did offer an amusing insight into the mind of fanatic.

    If you are going to claim that you offer education, then fairly offer both sides of the issues otherwise you are offering indoctrination and misinformation.

    Good on you Betty - the sign of a good blog entry is that it's still relevant 3 - 4 later. I hope you will continue to call the assholes on their assholery.

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    1. Your surgery is up and coming as you say so you have yet to see how you respond and you also may play it down afterwards if you have problems because you will not want to be proved wrong if you do have lasting problems. Keep on trucking HERS to help and advise others because that is what you do...whether that person takes your advice or not you are not bad because your intentions are good and reasonable.x

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    2. The number of women protesting in US against uninformed unconsented hysterectomy with severe after effects is quite considerable. In HERS video the facts are stated bluntly but this is what many women after surgery go thru. To bias this info there are many other websites where doctors and women present the opposite outlook and more optimistic counter scenarios after surgery, You may choose between each way as YOURS to be.

      Every hysterectomy changes the same in every woman - deprives her of certain parts, functions, natural body processes. In what degree a woman suffers afterwards, is to a certain degree predictable. Apart from its physicality, women with any mental, psychological problems BEFORE the surgery, should avoid this procedure, Hysterectomy 'hits' on libido, the will for living, life energy. You must be very strong, healthy, and have fulfilled life, to continue after. Cancer cases don't give us this choice for consideration.

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    3. I highly recommend reading the British Journal of Science findings on Hysterectomy. If you have a benign condition, this may change your mind about how you'ld like to approach the problem. It's very factual and it's intended readership is medical professionals. I read it for fibroids and it scared me, to be quite up-front with you. The information it gave me was far more comprehensive than was the specialist consultation.

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  110. In what way is the HERS video 'ridiculous'.?

    I find it 'scarry' as hysterectomy IS scarry

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  111. I think it is very concerning that some women who have had organ removal such as womb, ovary, cervix, state on one health website that they have recovered after surgery but on another health website that they have sever after effects such as estrogen drop, tiredness, other problems - women considering surgery may never know this and get the full picture.
    Thank you HERS.

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  112. HERS IS TOTALLY BIASED. Thank you for your viewpoint!

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  113. Think...Stop...Listen...Look...dont let granny hysterectomy naps because of extreme tiredness become your life.

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  114. Hi,
    My name is Sabrinna and I live in New Zealand. 9 years ago I was diagnozed with Uterine Fibroids. Hysterectomy was recommended. I had an adverse emotional reaction which just screamed, 'NO!' At this point in time I knew absolutely nothing. I din't use the internet back then. I researched books. I went to the local Womens Health Centre. I saw a councellor for my emotions and a social worker to help me navigate The Public Health System. I discovered a surgery called Myomectomy and many of the dangers listed by HERS. I will add here, that I only discovered the HERS website 2 days ago. I went from surgeon to surgeon having consultations until I eventually had a myomectomy (removal of the fibroids only). I then had 9 years of good health until they recurred. I thought, after 9 years I'm sure it will be easier to get safe, organ saving surgery now than back then. It isn't!

    I re-did all of my research beginning with the British Journal of Science, report on the immediate, short-term and long-term effects and risks of hysterectomy. I was in tears after reading that! My specialist had bold-faced lied to my face. I continued researching, finding other sources; Brown University, Harvard paper and then I found HERS (2 days ago). It all backs each other up.

    My mother was hysterectomized 5 ish years ago. I am more than aware of how hurtful and painful the information is. And you're right, it is frightening. As a life saving surgery, how wonderful women can live to parent there children and see their first steps, the first day of school, the graduation day, their wedding and the birth of the first grandchild. For my mother, hysterectomy was not life saving surgery. She was bullied into it instead of having safer, organ saving surgery. For me, I am again fighting the Public Health System to keep my organs intact.

    I am so sorry to hear you faced cancer and so glad to hear you won the fight. I wish for you (and for my mum) years and years and years of good health, vitality and a wonderful life.

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    1. Good luck Sabrinna with your fight to save your organs, because no woman should have to have that choice and women need to get together more and say NO MORE because we need MORE research. I am also sorry to hear that your Mother was bullied into surgery and organ removal - how tragic.

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