Re: Why Anti-Hysterectomy??

[Guest guest]

The thing is that there ARE some women who have complications and

problems after hysterectomy, but there is no way to predict which

women those are before hand. There is also no way to undo a

hysterectomy. So, with other options available I'm not willing to

take the risk that I will be one of the women who end up with

complications requiring further surgery,incontinence, sexual

dysfunction, depression or increased risk of heart disease.

> Hi Im new to this fibroid stuff but since i found out I have been

> asking the women in my family and it seems that quite a few have

had

> fibroids and different kinds of hysterectomies and have all been

> really happy with the results. I have a large family and so far

Ive

> counted at least seven that I know of.

>

> for me this isnt an option because Im trying to get pregnant but

it

> just seems a bit exaggerated to stay that all hysterectomies are

> wrong or bad. My mom said its the best thing she could have

done.

> Am I missing something or are we just exceptions to the rule??

>

> Lola

[Guest guest]

I won't say that a hysterectomy is a bad thing. But everyone adjusts

to them differently.. EVERY woman on my mother's side of the family

have had a hyserectomy due to fibroids. (I haven't investigated my

dad's side due to a language barrier and privacy reasons). My mom is

58 yrs old and had a partial hyst (still has her ovaries). She had

to do some HRT and her body when haywire w/that...so now she just

tries to deal w/whatever comes to her. She's going through some hair

loss right now.

My aunt on the other hand had a full hysterectomy, almost 59 and it

was a horrible experience. she tried HRT but it affected her blood

pressure... made it so high she was close to having a stroke, now her

hair falls out in clumps(as if she's on chemo) and her hot flashes

and chills etc etc or unbearable. Everytime I see her I tell myself

that I would not be able to handle that.

So, maybe it becomes an issue when you truly hit menopause??

As for me, I'm 26 and I obviously am not looking in that direction.

But if I did already have children I probably still would object

b/heart disease runs in my family.. and I have a congential heart

defect....losing my uterus would just worsen my condition. Also, I

have uterine contractions when I orgasm....These are things that many

women don't realize that they need or enjoy or that even occur in

their bodies. My ob/gyn and RE made it very clear of all the

purposes of having a uterus ....one must remember it has several more

functions than childbearing.

-Shaunah

> > Hi Im new to this fibroid stuff but since i found out I have been

> > asking the women in my family and it seems that quite a few have

> had

> > fibroids and different kinds of hysterectomies and have all been

> > really happy with the results. I have a large family and so far

> Ive

> > counted at least seven that I know of.

> >

> > for me this isnt an option because Im trying to get pregnant but

> it

> > just seems a bit exaggerated to stay that all hysterectomies are

> > wrong or bad. My mom said its the best thing she could have

> done.

> > Am I missing something or are we just exceptions to the rule??

> >

> > Lola

[Guest guest]

So do most women have bad hysterectomy experiences? Is my family

some weird anamoly?

and why do people get upset if their doctor recommends one - ive

read on the board where a doctor says that and then people say " oh

go find another doctor " i mean that seems quite silly... why

shouldnt a doctor recommend one if he or she thinks its a good

idea?

its just that i never hear supportive things about hysterectomies on

here and that seems a bit unbalanced since everyone is so supportive

about the other types of available surgeries

[Guest guest]

My Mom had a hysterectomy about 30 years ago when she was 39 - back

then it was the only option (Dr. told her if she didn't have it done

she would end up hemmoraging to death). Her fibroids caused

tremendous bleeding for 2+ weeks at a time and also caused her to

miscarry baby #5 at about 5 months. I asked her recently if she had

a choice then to have a myo or other procedure to just remove the

fibroids if she would have done that. She said no, she would have

opted for the hyst. She said she was done having children, tired of

periods and wouldn't have wanted to risk them growing back and

having to undergo surgery again. They did leave her ovaries and

just remove the uterus.

I just had an abdominal myo in Feb. because I'm 35 and have only 1

child so far and wish to have at least one more. My fibroid was on

the outside of my uterus and did not cause me monthly problems but

obstructed my bowel when I was pregnant & we don't want to risk that

again. If I was done having children & had the bleeding problems my

Mom and many women on this board have, I'd personally be very

receptive to a hyst.

I don't think your family is unusual at all - they are probably the

norm. My guess is that the people who aren't happy with the hyst.

option (which is every woman's right) are more likely the ones on

these boards looking for alternatives.

Regards,

Cindy

-- In uterinefibroids , " lola2197 "

wrote:

> So do most women have bad hysterectomy experiences? Is my family

> some weird anamoly?

[Guest guest]

My own mother had a hyst and is one of those women who said that it

was the best thing that she could do for herself, however, the only

other option that he doctor gave her was to do nothing and to

continue suffering with heavy bleeding and pain every month. I

remember her being hospitalized a couple of times when I was a

teenager because of the bleeding. Back then all they could do was a

D&C as a temporary measure. She didn't have the choices that I have

today, such as a hysteroscopic resection for submucousal fibroids

(these are the ones that tend to cause bleeding problems). I also

had a doctor that recommended hysterectomy. But because of this

group, and the internet in general, I found out that hyst didn't

have to be my fate and I had my small fibroid removed in a resection

and also had an endometrial ablation. I now have periods so light I

use less than 10 light tampons a month. Like I said in my previous

post, I did not want to be one of the minority of women who have a

bad hysterectomy outcome when there were other options for

treatment. And many doctors recommend hyst simply because it is

easier for THEM, or they lack the skills to do another type of

procedure. It takes a doctor with more skills and special training

to do a hysteroscopic resection or myo. And gyns don't do UAE at

all, it is performed by Interventional Radiologists. Here is a link

to a site with women's hysterectomy experiences:

http://www.angelfire.com/fl/endohystnhrt/stories.html

> its just that i never hear supportive things about hysterectomies

on here

[Guest guest]

Lola,

I think the anti-hysterectomy bias you (and some others) perceive on this

list stems from the fact that many (though not all) doctors offer

hysterectomy as the *only* choice. I've been on this listserv for less

than a year and have read many stories already from women who were told --

regardless of their age, whether or not they've had children, or even

symptoms -- that they *have* to have a hysterectomy *immediately* (usually

accompanied by threats of bleeding to death or cancer). There are a lot of

reasons for this, most of them inexcusable (lack of skill, lack of

knowledge, etc.).

I think what you are hearing is less of an anti-hysterectomy bias as it is

a pro-informed choice bias. No one should go into major surgery without

knowing the risks or what the other options are. Not all women are

informed of options or risks, and, frankly, I find that demeaning. I

should say, however, none of my doctors have ever mentioned hysterectomy as

an option for me, only as a very very slight risk of myomectomy. In fact,

the first doctor that operated on me left two tumors inside of my uterus

because taking them would be a far more complicated surgery than he was

willing to attempt. He may not be a great doctor, but he was definately

responsible enough to know his limitations. We need more doctors like that.

My mother had a hysterectomy when she was 35. She still thinks it was the

best medical decision she ever made. She had five children (two adopted)

and suffered with horrible periods for years, I don't know that there were

many other options then. She kept her ovaries and went through menopause

normally a few years ago (without HRT, since she is allergic to synthetic

hormones). Certainly it was the right choice for her then, and she doesn't

regret it one tiny little bit. I might be faced with the same decision

some day, and I can see circumstances under which I would decide to let go

of my uterus.

Sorry, long-winded answer to a reasonable question.

--Lee

> Date: Thu, 22 Apr 2004 21:06:42 -0000

>

> Subject: Why Anti-Hysterectomy??

> Am I missing something or are we just exceptions to the rule??

[Guest guest]

The question you need to ask yourself is if there's a trespasser in

your home, why burn down your house to get the person out when you

can just have the trespasser removed?

-- In uterinefibroids , " lola2197 "

wrote:

> So do most women have bad hysterectomy experiences?

[Guest guest]

Hi,

Doctors should tell their patients ALL posible treatments for their condition

and the pros and cons of each. It's a matter of choice and respect.

It would be " quite silly " to listen to any doctor who only gives you one

treatment option (where's the choice?) that also is not reversable and is

considered extreame except for cancer. This is " misinformed consent " . It seems

outragious for a doctor to tell a woman to have a hyst for a BENIGN condition

when less invasive treatments are available. I fully uderstand a hyst for

cancer. Many doctors can not perform a myo or UAE so they're all too ready to

recommend hysts.

Did the doctors fully explain hyst to your family members? Hyst is NOT a simple

operation. Risks during surgery include infection, bleeding and damage to nearby

organs. All doctors do not have the same skill levels and all patients are not

the same. You have questions of whether to remove the ovaries and the cervix

that come into play too. These can make a big differance in the outcome of a

hyst. So a simple hyst is not so simple. There are choices here too and who's

making them? The doctor that only gave you one option for a benign condition? If

a woman is not offered less drastic options, she is not given the opportunity to

make an informed choice.

Education and social class are two other important factors. The hyst rate is

highest in poor, rural regions where the level of education is low. And some

women view hysterectomy as a permanent solution for birth control, while others

feel it’s the “thing to do” because it’s what their mothers and sisters did

before them. The potential side effects of hysterectomy, and/or oophorectomy,

can be very debilitating. It can include: depression, anxiety, osteoporosis,

increased allergies, arthritis, loss of orgasm, loss of sexual desire, loss of

sexual function, hot flashes, night sweats, migraines, weight gain, thyroid

dysfunction, bowel dysfunction, memory loss, generalized fatigue, loss of

bladder control, stress and urge incontinence. These possible side effects

should be explained BEFORE surgery.

If your ovaries are removed at the time of the removal of your uterus, you will

experience surgical menopause, the side effects of which are greater than those

experienced by a woman undergoing natural menopause. Many doctors believe that

hysterectomy linked side effects can be controlled with estrogen replacement

therapy. Not so. Of great concern, is the fact that we now have strong evidence

that long term use of hormone replacement therapy is not safe. It can lead to an

increased risk of breast cancer, heart disease, stroke and blood clots.

Some women claim that sex has never been better, however, great sex following a

hysterectomy is NOT a guarantee. Why? Because hysterectomy is not a simple

operation. It happens to be a very complicated procedure requiring great

surgical skill to avoid damage to the bowel, bladder and vaginal walls. If

perforations are made during this surgical procedure, these can result in

further scarring that may interfere with a woman’s sexual response.

When considering a hyst, women should know that the surgical removal of the

cervix means that the surgeon will shorten the vagina, a procedure that often

results in discomfort with intercourse. And if the nerves going from the cervix

to the clitoral area are damaged, it may diminish your orgasmic response. These

outcomes of hysterectomy can be avoided if a woman insists on keeping her

cervix, especially if it is non-cancerous.

As far as the reports from women saying they have no bad experiences from their

hysts. You need to consider that some are having bad experiences but their

doctors are telling them they are unrealated to hyst. Sometimes it takes time

for problems to show up after a hyst. Not all women care about their sex lives

so they aren't going to report sexual dysfunction.

A hyst may be considered a good surgery option by some women compared to super

heavy bleeding when they are not given other options to consider. Bleed to death

or have a hyst? This isn't a choice.

Hysterectomy is an irreversible operation with potentially devastating

consequences. It is your health right to ask questions, and insist on answers.

If you do, you can make a truly informed choice, one that is right for you.

What I want are choices and I don't need doctors making my choices for me. I

don't want to have a surgery because Aunt Ethel had one and doesn't complain. I

want the least invasive treatment that will give me a good outcome.

Yes, UAE and myos have problems too but you do have options after having either

one of them. They can be repeated. If my UAE doesn't work, I can have a myo or

the oposite works. I still have choices.

I don't assume that a doctor has my best interests in mind. They may just want a

new car. Not all of them are like this but some freely admit it so it has to be

considered. There are compassionate, skilled and caring doctors also.

I want a doctor who repects me enough to give me choices and let me decide.

So many women here come here after only being given the only option of a hyst.

They are led to believe it's a simple surgery. They are not told about possible

future side effects or the possibility of uterine prolapse that requires more

surgery. I was given the only option of hyst 3 times (because none these doctors

could do a myo and didn't know about UAE) and went out of state to have a myo.

This was my choice and I didn't let any doctor make it for me. Isn't it amazing,

I had a myo and survived and am doing well.

I thank the women here on educating me about the other options that I had.

Education will set you free.

Ku

lola2197 sistermadly22@...> wrote:

So do most women have bad hysterectomy experiences? Is my family

some weird anamoly?

[Guest guest]

thanks for all the great answers - Im glad to hear that

hysterectomies are not the reproductive equivalent of the lobotomy

and are really just one of the many great options we have to treat

ourselves. I also read on hystersisters tons of great success

stories which was really helpful!!!

Thanks again!

L

[Guest guest]

Hi, I'm quite supportive of hysterectomy for women who want it or

have a medical need for it. I didn't get upset when my dr. insisted

upon it for me. I was ready to muddle through it until I found out

that myomectomy was an option.

The only women I know personally who have had hysterectomies are

older and have completed thier families.

Why give up an organ and subject yourself to hrt or surgical

menopause if you don't have to?

JanG

a wrote:

> So do most women have bad hysterectomy experiences? Is my family

> some weird anamoly?

[Guest guest]

In a message dated 4/23/2004 2:58:00 PM Eastern Daylight Time,

kukalaka@... writes:

> Doctors should tell their patients ALL possible treatments for their condition

and the pros and cons of each.

> It's a matter of choice and respect.

Excellent post Ku!

For those still needing treatment...

You have three choices...

1 - Let your doctor make your medical decisions...and trust that he knows best

for YOU and not for the " average " woman...or his/her pocketbook. And, hope for

the best.

2 - Become educated and seek additional advice/opinions from other doctors and

make your own decision. And hope that you have researched thoroughly and made

the right choice.

3 - Become educated, find a doctor you respect. Discuss all options and

information you have researched(remember...don't believe everything you read on

the Internet, or for that matter, everything a doctor tells you) and make an

informed decision together with a doctor you trust.

IMHO, one should take the responsibility of learning about their body and the

choices available...the only way you can ask the right questions. Although

doctors should provide you adequate information, the fact is they don't have

enough time (or in some cases don't care enough) to really provide you all the

facts you should know to make the best decision for YOU. Do your research and

take a list of questions. If the doctor cannot answer them, or gives vague,

don't you trust me? type answers...run...as fast as your legs will carry you to

another doctor. The reason we have such high malpractice is that the DOCS don't

do enough to police their own ranks and remove the losers. (sorry...for the

soapbox rant).

I am one of those so called " anti-hysterectomy " individuals. The reason being

that I was not given alternative choices....just watch and wait or hysto with no

discussion of what I should be watching and waiting for...then, when I hit the

brick wall with my misery from my fibroids (afraid of surgery and waited over 10

years)...I was then " too old " for myomyectomy (which was NOT offered when I was

in my twenties and thirties! and can't find a local doc I trust to do one

now)...and my uterus/fibroids were now so " big " that I would need a vertical cut

Hysto. None of this was discussed with me through the years...and I had at least

ONE GYN that I really trusted at the time. I am not totally against

hysterectomy, but against uniformed hysterectomy (especially at early ages...we

have had some very young women come here looking for advice that were only given

the option of hysto...even before they have had/completed their family).

With the increasing problems from bleeding and approaching middle age, I became

more and more tired and less active and gained weight as my fibroids continued

to grow and I became more and more reclusive due to being afraid of bleeding all

over the place. So, I finally told my GYN that I wanted the UAE and if she could

not support me in my decision, please speak up so I can find a new GYN. I had

the UAE 11/02. It was technically successful (50% shrinkage) but I have not had

complete resolution of my symptoms, and am now 50+ trying to turn this mildly

overweight freighter around to get back in shape. Some friends said, just have

the hysto and be done with it. That annoys me as I have other friends that are

now having reconstructive surgery due to that " major organ " that had grown to

bigger size leaving a the rest of the organs no longer supported by it.

Remember, almost anything will seem wonderful if your pre-hysto symptoms are bad

enough. Sex? Well, even bad sex may be an improvement over no or painful sex

prior to the hysto....and, all three procedures may have adverse affects on ones

sex.

Just my .02

TXgenes

To Ku! How's KUBBY??? Hope all is well. Seen any bees lately?

[Guest guest]

Hi,

Yes, part of this would be true for a myo but not all. They are not cutting out

your ovaries, uterus or cervix during a myo (and don't in all hysts). They

wouldn't necessarily be around your viginal wall (with a resection they go up

through your viginal). With a myo, a lot depends on location of the fibroids. If

you have a pendulated fibroid on the inside or outside of your uterus, they

wouldn't need to cut through the uterus at all.

Infection, bleeding, damage to nearby organs, bowel, bladder and perforations

are all possibilities with a myo as with many other surgeriers.

There are more than one way to do a myo and you have resection as a possibility

for certain fibroids. You can even have a myo done with a robot.

But myo is often described as a terrible bloody surgery whereas hyst is often

described as a simple surgery.

My RE said myos were very simple for him to perform (he does several every

week). But many docs can't do them and I think many of these docs attempt to

scare off patients with the " bloody " myo story and mislead with the " simple "

hyst story.

All surgeries have risks.

Ku.

Dawn Dennings menopausefibroids@...> wrote:

Isn't what is written below true for a myo as well?