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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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EmpowHER Guest
Anonymous

To Toodles, Why are you on this hysterectomy blog? Are you here for answers to your problems? You must have some kind of problems or you wouldn’t be here. You would be living your life without thinking of your hysterectomy. Thank you for your conflicting opinion because I like what the other women have said. Thanks.

February 21, 2010 - 1:18pm

My apologies, Toodles, my comment should not have been about your sex life, you had not mentioned the sexual effects of the surgery. I should have been more general about the profound sexual loss experienced by women who were sexual before their surgery. When you said that the only side effects you had were gas and bloating, I wanted others to realize that the uterus is a sex organ and that loss of sexual feeling is inevitable if it is removed, and that the vagina is shortened and sutured shut at the top, neither of which is an improvement for women who experienced orgasm.

When you talk about the other side of the coin, some things are universal on both sides of the hysterectomy "coin". This is not personal, it is not between you and everyone commenting on this blog, it is an open forum read by many others, so it's important that the factual information about female anatomy and the functions of the female organs be explained.

The uterus is a hormone responsive, reproductive sex organ.
Women who experience uterine orgasm will not experience it without a uterus.
The vagina is shortened, made into a closed pocket, and sutured shut at the top.
When the blood supply to the uterus is severed the clitoris and labia become flaccid.
Because the nerves to the vagina and external genitalia are severed there is diminished or total loss of sensation.
Women who undergo hysterectomy have a 3X greater incidence of heart disease, and when the ovaries are removed the incidence is 7X greater.
The ovaries are the female gonads. Removal of the ovaries is castration, the same as removal of the male gonads, the testicles, is castration.

It's important to use the medically correct words about the effects of hysterectomy so that women understand the gravity of removal the uterus and ovaries. There are 22 million living women in the U.S. who have been hysterectomized, and nearly three quarters of them were castrated. One out of three women are hysterectomized by age 60, and one out of two women are hysterectomized by age 65. The female organs are removed from another woman every minute of every day.

HERS has counseled over 850,000 women. Not one was told the consequences of the surgery. Forums such EmpowHER have created the opportunity to bring this information to women. It is a moral and ethical imperative to ensure the information is factual so that women will not be further harmed by an impression that any hysterectomy is benign. The Hysterectomy Educational Resources and Services (HERS) Foundation was established in 1982 to provide the information well documented in medical journals, medical text books, and reported by hysterectomized women (see Adverse Effects Data at http://www.hersfoundation.com/effects.html). No woman can be said to have consented to hysterectomy without having been fully informed of her condition, the alternatives in treatment, the risks of the alternatives, and the consequences of hysterectomy and castration.

February 21, 2010 - 7:36am

You hate to repeat yourself SeeDandy1, yet for almost a year you have been, over and over again, even at 4:17 am-get a life, move on, do something healthy for yourself and therefore for your family, like you said, you can't go back so move forward in a constructive, healthy manner . As for you toxic "Anonymous", up at 4:46 am "scouring" the internet , with nothing better to do than insult people with views different from yours? Two words-GET COUNSELLING.

February 21, 2010 - 7:28am
(reply to toodles)

Dear Toodles,
I found your comments to me rude and offensive. I feel I have said to you, at any time, I am happy you have been so fortunate and wish you well. Why would you go a direction to even mention I wrote something at my time of 1:46 a.m.? So, people keep different schedules. I have to put my legs up periodically throughout the day, sometimes nap due to a disrupted sleep, and all due to my physical problems; especially, after the Hyst. and my RSD. Just because I wrote at this time; it does not give you a right to question this or judge. You have no clue of the caliber of person I am and have been, throughout my life, and how much I have survived, and how I do continue to try to find answers, and move forward, and what I tolerate every single day of my life. So do not get personal when you do not know me and who I am, or my sleeping habits and timing. Oh, my gosh. Talk about off the issue... If my family or friends heard this comment; they would be appalled for you to judge me; due to, they knowing me, and would say, "She deserves a medal for what she has been through, and how she keeps going on." Please let us all stick with the issue here, and you, yourself, refrain from being hurtful and vindictive, as all of us need to be. Your comment here might lead me to be of judgmental of you, and that you may be a "vindictive" person. But, I do not know you; therefore, let us all respect this of anyone commenting here. I just thought I was never ill with you, and listened to your side; just as I shared mine. But, "Get a Life"? Oh, Toodles, how sad I am for you to even offer up this comment.

I also, with my last comments, brought up things not expressed before. I do not know where a person might 'pick-up' on this blog site; therefore, I do mention some things again. So what...

You do not know "Toxic Anonymous" either; therefore the same goes for her. "Get Counseling"? Oh, my goodness, how cruel. It is sorrowful you had to lash back with obviosly feeling this need to offend. Nora expressed her sentiments to you with her last comment. I hope that adjusted 'things'. Please refrain, just as with anyone here, to be offensive and obtrusive. Let us get back to helping Terri so she can make an informed decision, hear from all of us who write here, if she is, in the future, having to make a decision on this very major surgery.

I wish you well, (and I am repeating myself again - Oops) and know this comes with saying I mean this with sincerity; that you are happy and prosper with all endeavors in your lifetime, and never, in the future, ever realize any aftermath problems relative to your surgery.

February 21, 2010 - 11:27pm
EmpowHER Guest
Anonymous

Let's see, if a man posted on here and said he enjoyed being castrated like you have Toodles, it would be just as outrageously ridiculous. Wow, sex is better without my testicles! Oh yes, we believe you! If your sex life is so great, why are you scouring the internet hunting for hysterectomy? It's bad enough that doctors lie to women and scare them into surgery, but it's even worse for a woman to tell other women to "get it done".

February 21, 2010 - 2:46am

Re-read your first comment to me norawcoffey-you were extremely offensive and personal in your remarks about my personal sex life with absolutely no grounds for making the statements about it that you did. There are women out there, four in my family alone, whose bodies benefitted from having this surgery. I speak from one side of the coin and I choose to do so in a respectful manner, et tu Brute?

February 20, 2010 - 9:54pm

Toodles, I have no anger toward you. I, and others, want to be sure that your post does not leave anyone with the impression that there are women whose bodies are not damaged by hysterectomy. As I said in my earlier comment, I'm glad that you feel the decision you made was right for you. When you say that you researched extensively, met with several specialists, had no alternative, and that every woman's situation is unique, it could easily be misunderstood by readers that you mean you have only positive effects of the surgery.

This is not personal. Understanding female anatomy and functions of the female organs is essential information every woman needs before considering undergoing hysterectomy. The anatomical facts of what is cut, severed, and removed, and the loss of the sexual, structural and cardiovascular protection conferred by the uterus is universal. My comment is not about you, it's about making sure that there is no misperception by readers that any amount of research or consultations with specialists could prevent the loss of the important life long functions of the female organs.

February 20, 2010 - 9:35pm
(reply to norawcoffey)

ATTA GIRL, NORA...

Every body is different, but I know this... If I would have spoken to someone as myself, who have and realize the same symptoms I have; I would not have taken the chance to have this done. Toodles, you are so lucky. Even with the research you said you did, it could all be done, but the 'What Ifs' if it doesn't; is the 'HORRIFYING' factor. I can speak as you can. Your Hyst. went well. Mine did not, and I will never be able to go back to the person I was before, like millions of other women. I have a daughter who is 23 years old. In my personal opinion, and what I went through, and now deal with daily and life long; if she was told she needed a Hyst. --- I would fight it with my every breath and whatever a motherly heart would do to protect her child. I would not want her to take that chance to bear what I do now. I just hope you get this, Toodles. I hate to repeat myself, but there is not going back. It is a matter of other alternatives which are sadly not shared with women. Too many thousands of doctors are misleading women into unnecessary Hysts. for money, power, and greed. I know this first hand, and would never let this happen to a loved one; especially, my own daughter. My husband would back me up on this, and to save his daughter also from the possibility of this happening to her, and most likely - probability. This would be something you and your husband would feel opposite of, but let me ask you this, (and I do not know if you have a daughter) if having a daughter, and she told she needs a Hyst., after even hearing from someone as myself, even one person, with all these other people and their voices; would you take the chance with your own daughter to wind up as I am now? If you do have a daughter; just please help her with every possible alternative. This is how much I care about you, Toodles, and for you, personally, what I would want to convey to you, if you were right here next to me, in person.

On a final note, I attended the Hers Foundation Conference in Pasadena, Ca. a couple years ago. I went there to see if I could find help for relief of the aftermath of physical problems after my Hyst.. The trip was so hard on me. It due to the symptoms of the Hyst., and I barely made it, but I did. It was that important to me to find information and help. I also could barely afford it. Get my point? I was at a point, after seeing five (5) other GYNs for help after this Hyst., and nobody could give me help; I went to this Hers conference. I was, in my head, begging for help and answers as to why I felt the way I did and do. Plus, the Gyn who performed the Hyst. on me finally passed me off with a scratching of the head; so to speak, and said, "Well, I guess you need to get a second opinion as to why you don't feel right. I have never had any patient have any problems after a Hyst." Gee, where have I heard that before... (Only from other countless women hearing the same from Gyns who castrated them. Why would they all have this same 'standard' statement?

I saw a lot there. I realized for the first time, with a video shown, and pictures, of what happens to a female's body when having this surgery. I was never shown/told by my GYN that all these nerves are severed, (AND with my RSD nerve disease, it should have sent up a 'red flag' for him; since he was
well aware I had it years before, plus I gave him current articles and brochures a month before the Hyst.) plus ligaments also severed, and tendons; and the prolapse of bowels and bladder; the shortening of the cervix, and all the other that goes along with a uterus taken to leave a female with a major part of her sexual 'part' taken - just like cutting off half a man's penis and cutting off his testicles. It is worse for women, as it just cannot be seen. A man would not suffer what women have happen with prolapse of organs. Plus, I found out about adhesions inside the body, and how infections can happen. I found out that removing a uterus can be worse on a female, and lead to heart problems and bone problems. This is a lot, but why didn't my GYN tell me of any of this, and I had to find this out on my own, but only AFTERWARDS. See, I will repeat myself, but have to reitterate that I had faith in my doctor of 18 years, and felt my welfare and health was his primary concern. He said I was way too anemic, and had to have the surgery right away; that I could not afford to wait another month. Well, I found out later that my fantastic insurance through a stock brokerage firm I worked at, (and I had to take a 'Leave of Absence' due to a major foot infection in my right leg, and also injured my right leg due to favoring my left; finally sent an orthopedic specialist to decide I had to quit working) this insurance was due to expire after the first of the next year; and why this GYN was pushing me to have this Hyst. by Jan. 31st of 2003. It wasn't the 'schpil' he gave me about me not being able to survive one more menstration period. It was because my insurance was no longer, come 2004, with my "great insurance" company, and he and his office had no idea, and certainly could not ask what my plans were after that. It would have sent up a red flag as to why they would ask this. It would have sounded strange; therefore, get me in there with the timing.

So, at this conference during a break, I went outside, and I was crying. I was so mad and upset at the doctor who did this to me; yet, I was glad to have a better understanding as to why I feel the way I do. I could not believe a surgery changed my whole life, physically and sexually. But as I was on this break outside during this conference...

I saw a young woman sitting on a bench and crying horrifically. I went up to her; as I was concerned. She had a cell phone in her hand. I said, "Are you okay?" She looked so young. She said, "I just got off the phone with my mother and also spoke to my son. He is four years old, and my Mom is watching him while I am here. But, I heard my son's voice, and I had to hang up." She explained why...

She said she had an unnecessary Hyst. a year prior. She found out afterwards she did not need it. It was due to a small fibroid, and she, with researching afterwards, found this out, but also by coming to the conference. She was already told (afterwards) she did not need the Hyst., but she was, as I was, with being there at this conference, trying and being hopeful that there was help to reclaim our bodies physically, and get some answers to some very important questions, and what may help physically and such. She had such same symptoms as I do. I found that interesting. She said, "Oh, you saw me crying?" I said I did and why I came to her. She said, "I could not handle talking with my son. His voice just upset me because I know I cannot have anymore children, and I want more children! This doctor took this all away. How could a doctor do this?" I asked her how old she was. She said she was 26 years old. (She was about six years older than my own daughter). She said she felt so ruined because she so hoped for more children, felt she was so stupid and naive to let this doctor do this, put her faith in him, and also having physical problems now with her bladder, abdominal pain, and fatigue. She said, "I am only 26 years old, and I find out from other doctors afterwards, and now being here; that there were alternatives, and that the surgery was not needed, and I did not have to have my ovaries removed either; I feel as if I want to throw up. I mean it. My husband is so upset too. He is here with me." I said, "What a great man." Well, we gave each other a hug. I shed a bit of light on my own personal reason for being there, but it was then time to go back in; as the break was over. I got her email address, and have tried to stay in touch with her. I did say to her, as we were walking back in, "I am not trying to preach to you, but I am a mother of a daughter who is old enough to have children. I am saying, as a mother, you must love your son very much, and why you cried when you heard his voice. You hold onto that, and transfer those tears with thinking of how much you do love him, and you have him, and he is priceless, and you can think in your mind that if you had another child, you would give that child love coming from you - so give it to your son instead. He will get a 'Double Whammy' of Love." She laughed, and I went back into that conference with a bit of a renewed spirit that I may have helped another female in this 'plight' of a Hyst. gone bad...

I am sorry this is a lot of reading, but I hope I have done some good here, and shed some light for everyone. I look at myself, and say, "Oh, how I wish I could go back to 'BH' (Before Hysterectomy). My children think that I will just get better and wait for that day. I wish with all my heart that was the case. They knew who I was prior to this surgery, and what a vibrant and esteemed achiever I was at anything. They miss that part of their mother, and this could be what breaks my heart most of all; so... this is another painful aftermath of a Hyst. being done. The emotions of love are so hard to endure at times. Just like this young woman I met at the conference, and she had emotions for her son, and also the child(ren) who will not be...

February 21, 2010 - 11:16pm

Hello again.
In my case, which I researched extensively with several specialists as everyone should do, I had no alternative. Therefore, I "got it done" and it was worth it to me and my loved ones . The phrase "get it done" is a phrase which, it appears, has rankled many who are carrying alot of anger who are choosing to direct this anger at me at this point in time. Why? Because my surgery was successful and based upon my experience I would recommend it? Because I thoroughly researched the dangers first and then again came through it all successfully? Because I will not be bullied by those who disagree with my belief which is based upon my personal experience? I believe that every woman's situation is unique and should not be painted with the same brush. If the situation, in fact, calls for it so that you can better your quality of life and you are willing to take the chance at possibly having a better quality of life then again I say, get it done. I took the chance and thank God that I did. There is alot of displaced anger out there which would be better channelled elsewhere in a more constructive and less acidic manner. Letting the anger fester doesn't do anyone any good. I understand that people are venting but I sincerely hope that these same people are doing more to alleviate their pain and suffering in order to successfully move on to a better place, than this. Again, I wish you well, Toodles.

February 20, 2010 - 8:37pm
EmpowHER Guest
Anonymous

Toodles, you being offended is a small price to pay for saving other women from this barbaric unnecessary surgery.

February 20, 2010 - 2:12pm
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