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

By Terri
 
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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.

Add a Comment194 Comments

AnneMarie

I had a complete hysterectomy a year ago. I had my ovaries and tubes removed in 2007 to reduce breast cancer risk. I now have "no parts" left. You are wise to do your homework and "side effects" depend upon the parts removed. Generally, the cervix is left IN (mine is out). I think it is great that you are asking questions and it's very important to understand the doctors reasons and to get a second opinion, too. Your age matters, the extent of the hysterectomy matters and the surgical method matters, too. My was a DaVinci robotic surgery. Feel free to contact me if you want to share more details and I will share my experiences. I have no problems but we are all different.

December 10, 2011 - 1:47pm
norawcoffey

Sadly, your experience is common. Many women are adamant with the gynecologist, nurses and anesthesiologist that they do not consent to hysterectomy, they consent only to exploratory surgery and conservative treatment. When they are given a consent form to sign, it generally says "Exploratory laparoscopy or hysteroscopy and possible TAH/BSO". When they ask what that means, and are told it's total abdominal hysterectomy and removal of their ovaries, they do not want to sign. They often ask to see the doctor, so they can discuss it, and they're told they will see the doctor in the operating room before they do anything, and that she can be sure the doctor will only do what they verbally agree to. She's told everyone who has exploratory laparoscopy signs this consent form, and she's treated like a recalcitrant bad child who is unreasonably delaying everyone's surgery by not cooperating. The doctor assures her he will not remove her uterus or ovaries, and with the nurses and anesthesiologist aware of this agreement, she signs. That, unfortunately does not protect the majority of women. They most often come out of the operating room without their uterus and ovaries.

You would think they could sue, but it is almost impossible to get a lawyer to take their case because they signed the consent form. The doctor and hospital staff will not testify that she was bullied or lulled into signing, so it's her word against the doctor. Jury's invariably side with the doctor.

In my case my attorney husband did not want me to sign the consent form. He caused the planned exploratory surgery to be delayed while he pursued having a new consent form drawn that said exploratory laparoscopy, possible exploratory laparotomy and cystectomy, it had no caveat about possible removal of my uterus or ovaries. That did not deter the gynecologist from removing my uterus and both ovaries.

I came out of the operating room without my female organs. My attorney husband did not support my filing a medical malpractice case. He practiced law all day, and did not want to come home to discussion about a lawsuit. Without his support I did not feel that I could manage keeping myself and our family together while pursing a lawsuit.

The circumstances of "anonymous" is typical. This is not just about money, this is about power. The power to remove the female organs knowing full well that it is not what women want.

There are a few women commenting on blogs and articles that women who are posting all over the internet, in every venue they can, about the consequences of hysterectomy. It's said as an accusation, as though they are doing something self-serving. But it is the opposite. They giving other women the benefit of their experience, which is not atypical, they and I represent what is being done to women every minute of every hour in the US. They refuse to be silent and become part of the problem, they are the solution, they will stop this from being done to women.

The tide is turning. It is women like "anonymous" who ring the alarm that women all over the world are paying attention to, and when at all possible, they are staying out of the operating room. When they have a condition that needs treatment, many women are handing gynecologists HERS Hysterectomy Pamphlet and "The H Word" and telling them to educate themselves. Five years ago doctors were saying "You read too much, stop reading". Today many are saying "I know about the HERS Foundation, they're educating women about their bodies, they're do an great job". Knowing that, after 27 years of educating women about their anatomy, the alternatives to hysterectomy and the consequences of the surgery, HERS will be public about what they are doing in the operating room. In growing numbers, women who are lied to about what surgery will be done, and the consequences of hysterectomy and castration, are refusing to be silent or silenced. Together, HERS and their voices are changing this for the next generation of women and girls.

It has taken us 27 years to get here. Now the work truly begins to expand the information so that it reaches every woman and man, and to legislate the required "Hysterectomy Anatomy Video Education" consent law.

December 4, 2011 - 8:28am
EmpowHER Guest
Anonymous

I did not consent to have a hysterectomy yet I was given one anyway. No, there wasn't a gun put to my head, but I was unconscious when it was done against my wishes. Don't assume that your experience covers everyone. I adamantly refused to consent, I had no history of chronic pain, nor any problems. The only surgery I needed was to have ovarian cysts removed, but that didn't happen. I've spoken to many women who were deceived into the surgery room for exploratory surgery, only to wake up without their organs. From not having pain all my life, now I have chronic pain. It hurts when I sit and bend, even when I go for a walk. I have no sex drive and lost my ability to orgasm. Frankly, I would have preferred a gun to my head. At least that would have been a choice.

December 3, 2011 - 9:37pm
norawcoffey

The majority of 1,000 women who reported their experience with hysterectomy had "successful" surgery, it was not "botched". There is nothing biased or one sided about the Adverse Effects Data reported at http://www.hersfoundation.com/effects.html, the report includes women who had positive experience and women who did not. The data from every woman was entered exactly as it they reported it, in their words.

When a hysterectomy is performed with no complications, there are some structural, anatomical changes that occur in all women, and other physiological effects that occur in some but not all women.

For example, if you never experienced uterine orgasm, you have not lost it when your uterus is removed. If you never enjoyed sex, or were repulsed by it, you have not lost the immense pleasure of gratifying sex.

When the uterus is removed the broad bands of ligaments, nerves and blood supply that attach to the uterus are severed. The effect loss of pelvic support, loss of support to the bladder and the bowel, loss of sensation in the vagina, labia and clitoris. The vagina is shortened, sutured shut at the top, and made into a closed pocket.

If a woman who is experiencing "gut-wrenching" pain, as the previous comment described, she may experience less of the type of pain she now has if her female organs are removed, or the pain may be the same or worse. The majority of hysterectomized women who or reported their experience with hysterectomy to HERS who had suffered severe, unrelenting pain prior to the surgery , said if only they had known the consequences of hysterectomy and castration they would never have had the surgery.

Unfortunately, the clock cannot be turned back. It is important to learn the facts about the anatomical changes that occur after hysterectomy, and to evaluate whether you want to chance trading one set of known problems for another that may be far worse than what you are experiencing now.

Watch the video Female Anatomy: the Functions of the Female Organs at www.hersfoundation.com, and join the lively, unmoderated discussion on HERS blog at http://hysterectomyinformation.blogspot.com/

Arm yourself with reliable information.

December 3, 2011 - 4:49pm
EmpowHER Guest
Anonymous

I'm not scared by the :234 site. It doesn't take a rocket scientist to see that it is totally one-sided. There are no stats on the conditions of these ladies to start out and it appears they ONLY used women that had problems for their stats. There will be botched surgeries out there for any condition, but I know many who had botched shoulder surgeries and back surgeries that also ruined their lives. I do not have any friends or relatives who had a botched hysterectomy. If you have a good doctor, this should not happen. I HIGHLY recommend going to a doctor at a university hospital if possible- they are about teaching verses profit. Get references. No one puts a gun to your head to do this. Make an informed decision and take your time. As for me, I'm worse off than the majority of the HUGS women they surveyed- and I HAVEN'T had surgery yet. That's my point. We don't know how these ladies started out. They may just be in a similar state. I've suffered for 8 months now with chronic pain from endometriosis. My doctor has burned it out once and left everything intact. However, endometriosis returns and I've had 3 doctor opinions that the only way to stop it is removing the ovaries (that make the cells that create endometriosis). If I wasn't done having kids, I'd deal with the pain until I did and then get the hysterectomy. I have two healthy little kids that I cannot keep up because of the chronic pain, so I'm totally ready to get on with my life. I have nothing to lose either. I already suffer everyday. I have kids. I have no sex life because sex sets me off into 2 days of gut-wrenching pain. I'm on narcotics just to function and worry about losing my job if I don't function normally. So, I think for some of us, we have no quality of life WITH our organs.

December 3, 2011 - 4:18pm
readupfedup

My heart goes out to all women who've been damaged or destroyed by the duplicity of these doctors. I hope that at least some of you can find peace and/or justice.

December 3, 2011 - 3:22pm
readupfedup

I'm new to this site - was talked into a hysterectomy several years ago, feel it has ruined my life. Have warned others, some listened, some didn't. Feel I don't have any options to right this wrong, want to sue, but don't think it'll do any good, wouldn't get my organs back anyway, statute of limitations has run out unless I qualify for an exception, feeling very discouraged and angry, and even afraid to talk to others about it, 'cause I don't want to ruin my "legal" options, as if there are any, just want my organs and my sex life and physical health back! Feeling guilty about even complaining, 'cause at least I still have my ovaries, but it's little consolation when I can't bear children anymore, nor enjoy sexual pleasure anymore, the criminals that did this to me are walking around with a smile on their faces, greenbacks in their pockets, and a great future, while I, their victim, get nothing but pain and loss. The only consolation I have right now is knowing that God is a just God, and he will avenge me eventually and punish doctors who swear an oath to "first do no harm" and then amputate and mutilate hapless women for profit and ruin their lives. It's frustrating that "normal" people will argue with me, not understand, think it's "all in my head" and that I should just "get over it." Even trying to warn other women is frustrating, because they think their doctors have their best interests at heart, and can't believe what I'm telling them. One woman did listen, and her organs were spared. I'm thankful for that small victory. But my personal pain is such that, I cry nearly every day, even years later.

December 3, 2011 - 3:08pm
norawcoffey

Anonymous, it is difficult to live with pain and bleeding. The Hysterectomy Educational Resources and Services (HERS) Foundation may be able to help you determine what is causing your symptoms. When the cause is known, HERS will help you find a gynecologist who has the skill to offer conservative treatment options.

You can watch the short trailer of HERS New York conference at www.hersfoundation.com. Listen to a panel of hysterectomized women discuss how hysterectomy has changed their lives; hear the keynote speaker, Congresswoman Carolyn Maloney, talk about the Outrage everyone should feel about the surgical abuse of women; and listen to a gynecologist who said "You never, ever need a hysterectomy for fibroids".

Nora W. Coffey
President, HERS Foundation

October 29, 2011 - 6:39am
EmpowHER Guest
Anonymous

Last post was posted by Jiggaz31.....

October 29, 2011 - 1:55am
EmpowHER Guest
Anonymous

The woman who came to my defense is now dead. Hysterectomy took her life. She suffered with the aftermath of hysterectomy from 2003 until January 2011. Her story is posted on my web site in her own words. She was lied to by her doctor as so many women are about needing surgery and then lied to about what was amputated. She suffered terribly. She lost everything after being hysterectomized and then she lost her life and all due to a surgery she did not need in the first place.

From personal experience and from talking with hundreds of women who have been hysterectomized and castrated; I have learned that this surgery almost always causes more problems than it solves. And..... there is no going back. Once your organs have been amputated; they're gone for good. The consequences are many; including heart disease, bone loss, brain diseases, various types of cancer, extreme depression, chronic fatigue, memory loss, vision loss, bladder prolapse, bowel obstruction, sexual dysfunction, etc., etc. The list is endless......

Hysterectomy is rarely ever necessary and is rarely performed for life-saving reasons. Hysterectomy is big business. Read the article posted on my site 'Sure Doctor: You Can Have My Uterus'. Gynecologists are surgeons. They can only make a living by delivering babies and by amputating women's sex organs. In my opinion, any surgery that is irreversible is a fundamental violation of human rights; especially when most women do not give 'informed consent' or any consent at all. Any kind of mutilation is barbaric. Hysterectomy and castration is mutilation and is barbaric. America leads the world in the number of hysterectomies performed. Greed is the reason for most hysterectomies; greed on the part of the gynecologists and the drug companies.

To the last poster..... I think you have made a very wise decision to hold onto your organs and remain an 'intact woman'. Since my hysterectomy, I feel like stepping out in front of a train every day and many women do become suicidally depressed (as many as 73%) after hysterectomy and castration. There is no 'fix' for this depression. Dr. Stanley West addresses this issue in his book 'Hysterectomy Hoax'. Dr. West warns women to avoid hysterectomy at all cost unless cancer is present for certain. He does not recommend hysterectomy for other reasons. There are so many alternatives to hysterectomy. Dr. Mitchell Levine who spoke at the HERS conference in NY also warns women that hysterectomy should be a last resort and also warns the hysterectomy should not be performed for fibroids. He went as far as to refer to the female sex organs as sacred.

I would give anything if I had never met the gynecologist who stole my healthy organs. That gynecologist crushed every hope and dream I had for my future... crushed every hope and dream into dust. My life is a nightmare and there is no hope that it will get better. Herein lies the real problem with hysterectomy. You can never go back. You can never get your organs back or the life-sustaining hormones and chemicals they produced.

October 29, 2011 - 1:54am
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