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Due to have a hysterectomy but am scared to death after viewing a video about side effects!

By April 5, 2009 - 4:04pm
 
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I have generally accepted my doctor's recommendation that I have a hysterectomy due to a very large uterine fibroid (15 cm) that is displacing my bladder. I also have cysts on my one remaining ovary so that's supposed to come out too. But after viewing a video link from your website, I don't know what to do. It was reported that 80% of women experience serious quality of life issues afterwards. I don't like those odds! Are there women out there who don't have serious problems after a hysterectomy? The link I viewed was from a Share story called Female Anatomy: http://hersfoundation.org/anatomy/index.html. I also have a history of breast cancer.

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Terri,

At the risk of offending some of those who suffered from bad experiences, I would like to tell you that I have a very good, longtime friend who will tell you that having a hysterectomy (and she had her ovaries out as well) was the best thing she had ever done. She had multiple issues with bleeding and fibroids, and her mother died of ovarian cancer. It has been a relief to her physically and mentally as well. She was on HRT afterward for a few years and then slowly weaned off of it when it seemed the time was right. She's happy and healthy and knows it was the right decision for her.

This is not to tell you that your decision (either way) is the right one or the wrong one. It's to say that every woman is an individual, and her health issues are hers alone, in the end. You must have a doctor that you trust. You must be able to do some research for yourself (of which you are doing an admirable job). You must be able to then be confident that the decision you are making with your body and your research and your doctor is the correct one --- for YOU.

In a perfect world, all our organs would function correctly and we'd be living healthy lives with good nutrition, low stress, few if any illnesses or diseases, and a vital outlook. But we aren't there yet. This conversation is hugely important and the passion that writers bring to it is fabulous. It's only through discussions like this that an issue gets furthered. But demonizing one side or the other isn't the solution, I don't think. Information, and tons of it, is.

April 8, 2009 - 9:05am
(reply to Diane Porter)

Dear Diane P.,

The only "demonizing" going on here are doctors getting away with this, and not providing alternatives to women, and doctors not doing everything they can to leave a woman's organs (vital organs) intact. There are too many doctors doing this for a "one side" reason: to make money.

If this happens to one woman; to have an unnecessary Hysterectomy, it is one too many. This is the whole point. It has happened to millions of women. You must understand this one statement, if nothing else. So...
this must be stopped by legislation put into effect to cease this; as far as awareness to women, and there be nothing less than a law. No "discussions", no "conversations" - LAW. I would not wish any ill upon you, but if you could only live this 'one sided' view by women who have been talked into a needless surgery, had their 'vital' organs removed, and could feel what we feel; you would be on this band wagon to support a law as this. Wouldn't this be great - to end all the discussions we are having regarding this? It would just be 'The Law' to have enacted so women are informed, well informed, if a doctor says a woman needs a Hysterectomy. A woman would sign a document stating she has seen the Hers Foundation video, read all the problems which have been documented that women have encountered, deal/live with, and all physical problems (including sexual), and then they can make a decision. Hey, do we not see those thousands of commercials with a promotion of a health aid, and is stated (as an example), "Could cause cause headaches, insomnia, diarrhea" (etc.) - I am sure you get my point here. Why not for a Hysterectomy? This is too serious for discussions, conversations, and all of that. It has to be law. Mark my words, as said before; if this type of law put into force; doctors will not be recommending Hysterectomies like handing out a candy to women. They will suddenly become really educated on how to perform Myoectomies if a woman will subject to that as an alternative, and really have to stand up to prove any type of invasive surgery necessary. Oh my gosh, what a great idea? Doctors would have to own up to why a woman really needed to have any kind of procedure done. This is not one sided with this concept. It has only been one sided for too long with doctors getting away with this castration to women; including me. There is no room for anymore conversation with this. This has been a holocaust happening for way too long to women. The one side, again, has been the side of the doctors.

Diane P., if you want to help, get on board to sign the petition at the Hers Foundation website to help get this legislative law passed. I would hopefully believe you would validate this. If not, you are missing out on helping every concept of this, and it will continue to be "one-sided".

Good and 'Happy Trails' to you always; especially, with your female vital organs. I would love to hear of the day when there is found a way to put mine back intact...

April 8, 2009 - 7:44pm
(reply to Diane Porter)

"Information, and tons of it, is [the solution]". I agree with your statement, Diane. The information I'm receiving is terrific. Just the fact that it's causing me to get a second opinion is invaluable. I also plan on asking some women that I know some candid questions about their experiences.

Some of the posts have asked me if I have a husband or significant other - no I don't. I am a single mother, but now that my boys are grown (21 & 19), I have recently started contemplating the idea of a long-term relationship. That has to be a factor in my decision, too.

Thank you for weighing in... Terri

April 8, 2009 - 10:30am
(reply to Terri)

Hello Terri,

You have responded well to all who have given you input. You have heard from one who says of knowing of a female who had a Hysterectomy and it all worked out fine and well. This is great to hear, but there are too many who suffer - much more than those who are doing okay. My point here is this: there are too many of us out here who have experienced hideous and horrific consequences in the aftermath. Can you afford to take that chance when there are alternatives available. Even with fibroids, one can just wait and let nature take its course. I wish I was made aware of this; i.e., I could have done nothing, and yes, suffered with heavy periods still, but in the long run, the fibroids will shrink and life and nature will put it back right. I would have rather dealt with this and left my body in tact, rather than suffer with what I deal with daily now. Terri, do you think so many people responding here are making this up? It is real. It happens. I think you just cannot afford to make a decision on something where in the aftermath; there is no going back.

Of course, do your research, but by hearing from people as myself, please take this into serious consideration. We who have had this done and are now suffering only implore you to not do it because of this chance you will take. Research the alternatives, all of them, but also - think about doing nothing, and just seek help to get you through this while nature works with you and takes its course. That is a great alternative
also. This is what I would have done, had I known what I would be dealing with now. You may hear of women who will say they feel fine after a Hyst., but I guarantee there is a percentage of these women who are only hiding and not speaking up for fear of being questioned. As I said in a previous post, and this is fact, women have been afraid to say anything for fear of someone thinking "it is all in your head". Those are the women out there who break my heart. They live in their own private "H---". Terri, do not become one of these women either. And, you want to have a relationship with someone, thinking of this? Well, get ready for the possible aftermath of a Hyst. to become a 'shell' of a female in the sex department. You can talk to my husband who I have been married to for 26 years. He will confirm the 'sex kitten' I was before the Hyst., and now I could care less for love making. Do you want to chance this? I even think I could handle the physical pain I deal with after the Hyst., but to feel different in this department is too awful, and it has not only hurt me, but also my beloved husband. I only thank that he was/is my best friend first, and accepts the horrific thing done to me physically, emotionally, and sexually - in terms of not wanting to have sex. I mean it, and welcome to ask him. I was the promotor of sex before, and he is lucky to get a good, hard kiss from me now.

Terri, I have said so much with my posts, but in essence, I just do not want to have you RISK what has happened to me and millions of other women. I hope, with my posts, I have helped. This was my initial goal. I do appreciate that you have shared, and let me share too. I am wishing the best outcome for you, but please, oh please, do not do this unneccesary surgery. As I was trying to express to 'Alison' who posted; it may be fine and well to listen and ascertain all sides, but had I heard what I have posted before my Hyst.; I would have not gone through with it. Gosh, how I wish I would have heard from someone as myself beforehand.

On a final note, research, but please, oh please, take the time, effort and whatever to contact Nora at the Hers Foundation. She, and her great group are not 'one-sided'. She has gone through this herself, and understands all what women have to make with a decision on pertaining to this life altering surgery. She is the expert. Yet, I am a 'personal' expert. It could happen to you what happened to me. Do not take that chance... Now, I have said my 'piece' and 'peace' on this.

Fare thee well, dear Terri...

April 8, 2009 - 6:20pm

The endocrine system regulates a woman's bodily function and emotions through all of the human hormone receptors. I am convinced hiding the endocrine system from women through routine gynecological exams is vital to the gynecologists female iatrogenic illness contribution to the medical industry. The Gynecologist surgeons are "handing chronically ill woman (via: sex organ, endocrine organ amputation) to the medical industry for a life-time of various CAUSED (iatrogenic) HEALTH CARE PROBLEMS"...This is what the Gynecologists are doing to women. The negligence of not informing women of the known medical facts regarding the amputation of the female sex organs including the endocrine system (ovaries) by deceit must be eradicated immediately. The known gynecological iatrogenic illness epidemic is embarrassing for the entire medical industry at this point and is "THE MOST HEINOUS ACT OF MEDICAL DECEIT RECORDED IN HISTORY-FEMALE SEX ORGAN AMPUTATION/CASTRATION BY MEDICAL DECEIT FOR PROFIT". I believe every branch of medicine would be positively affected if the biggest "best kept secret" in medical history "female sex organ amputation/castration by medical deceit for profit" is brought "out" and ended by law. Sign the HERS Foundation-Petition to add informed consent to the gynecological consent form.

April 8, 2009 - 8:01am
EmpowHER Guest
Anonymous

Ok, folks, now it is time for me to “Let the dogs out!” Anyone having any doubt about any of this: spaying and neutering are medically the same thing being done to animals as are hysterectomy and ovary removal for women! And one of the main reasons that this is done to animals? To “calm” them down! Think stallion to gelding. And what happens to animals afterwards? A few looks around your neighborhood’s backyards will show you that “fixed” animals become fat and lazy and lack motivation. Page thru some pet magazines and you can find ads for animal hrt, too. So, why does the medical profession continue to insist that women are somehow different from every other animal on the planet? Well, if it they admitted it, then they’d have to stop, now wouldn’t they?

April 8, 2009 - 7:59am
EmpowHER Guest
Anonymous

Terry, I know there are a lot of long posts with a lot of information, and I'm sure it must be overwhelming, but to make it simple, fibroids can be removed, it's called myomectomy. That is what you need done, and then you do not have to worry about any of this. Ask yourself why your doctor would suggest a hysterectomy, when your fibroid could just be removed? If you had a tumor on your kidney, do you think they'd remove your kidney? Of course not, they would remove the tumor and leave the kidney intact.

If I was you, I would contact the Hers Foundation and see if I could get a referral to a doctor who specializes in removing fibroids. Many gynecologists will not remove the fibroids because they only get paid about $300 and it takes more time than to remove the uterus which they get paid five times that amount. If you just get a second opinion from a random doctor, you could get the same opinion to remove your uterus when there is no need for that.

As far as looking for opinions of women saying that it's great, be very careful. I know women who told me that it was the best thing they ever did, only to find out after the fact that they were having sexual dysfunction and all kinds of other problems. Since your uterus is a hormone responsive sex organ, it only makes logical sense that it would have a negative effect on your sexual response. Please look at all the pictures on the HERS website and look at all the nerves and blood supply that's severed when the uterus is amputated. It is really a mutilating damaging surgery, and there's no need when you just have a fibroid or ovarian cysts. Both can be removed.

April 8, 2009 - 7:12am
EmpowHER Guest
Anonymous

Terri,

I am afraid that I cannot tell you anything good about hysterectomy except that it opened my eyes to the medical profession's all too often shabby treatment of patients. I can tell you that I had women around me who said zip, nada, zilch against it before my surgery, but were quick enough to agree with me about it afterwards.
One book that I read explained that from primitive times onward women had to depend on men for their and their children's very survival. This put women in the position of always competing against other women. The book was suggesting that this primal instinct to "best" another woman is still within us. I'd feel better if I could discount it, but I can't.
As to the breast cancer, this month's AARP has an article, "The Anticaner Lifestyle," about an up and coming, ambitious physician and neuroscience researcher who just coincidentally filled in for a no show at a project only to have a brain scan unexpectedly reveal a cancerous brain tumor. Estimates gave him only a few years to live...that was 16 years ago.
He has used his advanced training to stave off the cancer and he has written a book about how he is doing it. The book is "Anticancer: A New Way of Life" by David Servan-Schreiber, MD, PhD. He is a clinical professor of psychiatry at the Univ. of Pittsburgh School of Medicine.
Here is my favorite quote from the article, "The first thing that I learned is that we all carry cancer cells in us, even if only a few. But we also have natural defenses that usually prevent these cells from becoming an aggressive disease. These defenses include our immune system; the bodily functions that control inflammation; foods that reduce the growth of blood vessels needed by tumors.
More than one third of Americans will develop detectable cancer. But nearly two thirds will not; their natural defenses will have kept the disease from taking hold. To survive my brain cancer, I knew, I'd need to learn how to strengthen my own protective systems."
I hope that this in some small way helps you. I have said a prayer for you.

April 7, 2009 - 9:56am

I am overwhelmed by so much information! Thank you for your passionate responses. You've given me much to think about.

I have to ask, however, isn't there anybody out there who hasn't had a bad experience? I would still really, really like to hear from those ladies. If all I hear are the negatives, I'm unable to weigh the pros and cons. It causes me to dig in my heals a little bit because I have nothing to compare this information to. It's not stubbornness, I just need some balance. Does that make sense?

After reading all of this, of one thing I'm certain - I will get a second opinion. I don't want to risk losing my ability to feel things, sexual or otherwise; to feel joyful, maternal.

Right now I'm being treated for breast cancer so there won't be any surgery for at least 4 months. That'll give me ample time to research alternatives. Thanks again.

Terri

April 6, 2009 - 10:58pm
(reply to Terri)

Terri,

I just read your most recent post. I understand you wanting to hear from perhaps women who have had this surgery done and feel positive about it. My response to this is: The bad outweighs any good. Do you really want to take a chance, and wind up like millions of other women? Just what you said, "I don't want to risk losing my ability to feel things", etc. should be enough to say "No". There are alternatives. This being for a factor of fibroids as I had, is not a warranted reason to have a Hyst., and you cannot afford to risk the very bad outcome to this. Why would you even want to chance this?

I am so sorry you are dealing with breast cancer. My sister went through the gambit of that also. I wish you the best outcome with all you are dealing with. I know what she had to do. Please do not have a Hyst., and I beg you. You are already dealing with enough. Why gamble with more to face? I have now said all I could implore you with. Just do not do this, please...

My great gift would be to hear from you at this site, down the road, and you say you chose not to have the Hyst., and how great that will be to hear.

April 7, 2009 - 1:45am
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