RE: leaving the group

[Guest guest]

wrote:

I'm new to the group but I haven't truly gotten why people are leaving.

Everything I've read as been presented in what appears to be from a place of

compassion. Am I wrong

----------

, it's good to hear your impression as someone new to the group as to

how the discussion on hysterectomy sounds. I admit to being mystified as to

what taptap meant when she wrote: " I just wish it could be in a more

constructive manner so that it is fact based " as I felt what women were saying

about the potential problems with hysterectomy were fact-based. We also discuss

potential negative outcomes with UAE and myomectomy, so it's not like we feel

hysterectomy is the only procedure with potential negative outcomes. Some of us

do feel strongly that, depending on an individual's circumstances, hysterectomy

can be a drastic solution when there are more conservative options available.

But I don't see saying that as attacking the person -- just asking them to think

about the implications of an irreversible procedure before they go ahead. And I

would never withdraw my support from a woman based on her treatment decision --

to me, each woman's right to decide on the appropriate treatment for her body is

non-negotiable.

Leonie

--

" I went into the phone booth and came out Lois Lane "

Nuala O'Faolain on turning 50

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[Guest guest]

>>>>This site along with my own research has

caused me to cancel my hyst. for now in order for me to explore other

options. The knowledge has allowed me to know that I don't have to rush and

make the decision right now as the Dr.'s led me to believe<<<<

That's what this site is all about, getting information out, and letting

others know of the options. Most of us, before we started our research,

might have been blindly led into having a hyst. when it wasn't necessary.

For the women who have left this support group because they feel others are

not very supportive to ones who may be choosing hyst, it's because most of

us in this group are angry over so many unnecessary hyst being performed.

And we're outraged at so many doctors who do not let us know of our many

options. Those who decide on hyst. , and I'm sure I speak for everyone, we

are not angered by your decision or think you made a wrong choice, we're just

determined to let you and everyone else know of the other options out there.

Sometimes it comes off a little strong . . . but sometimes you have to be

that way to get your message heard.

[Guest guest]

In a message dated 01-10-10 15:32:23 EDT, you write:

<< That's what this site is all about, getting information out, and letting

others know of the options. Most of us, before we started our research,

might have been blindly led into having a hyst. when it wasn't necessary.

For the women who have left this support group because they feel others are

not very supportive to ones who may be choosing hyst, it's because most of

us in this group are angry over so many unnecessary hyst being performed.

And we're outraged at so many doctors who do not let us know of our many

options. Those who decide on hyst. , and I'm sure I speak for everyone, we

are not angered by your decision or think you made a wrong choice, we're

just

determined to let you and everyone else know of the other options out there.

Sometimes it comes off a little strong . . . but sometimes you have to be

that way to get your message heard.

>>

That's the way I see it, too. I just got a letter from one of my cousins and

she told me she had a hyst about 6 weeks ago. She knows about my fibroid

situation and what I was exploring in terms of treatment for them. I don't

know why she had the hyst; my first reaction was to think " I wish you would

have talked to me before you let them do that to you, " but I know it's too

late for me to say anything but supportive remarks at this point.

The irony is her mother had a hyst years ago, and both my aunt and uncle

applauded my efforts to avoid having one. My aunt's experience was a

miserable one, so much so, apparently, that it left enough of an impression

on my uncle for him to have formed a negative opinion of the procedure. I

can't help wondering if my cousin had had any conversation with her folks

before her surge.

[Guest guest]

>>>>This site along with my own research has

caused me to cancel my hyst. for now in order for me to explore other

options. The knowledge has allowed me to know that I don't have to rush and

make the decision right now as the Dr.'s led me to believe<<<<

That's what this site is all about, getting information out, and letting

others know of the options. Most of us, before we started our research,

might have been blindly led into having a hyst. when it wasn't necessary.

For the women who have left this support group because they feel others are

not very supportive to ones who may be choosing hyst, it's because most of

us in this group are angry over so many unnecessary hyst being performed.

And we're outraged at so many doctors who do not let us know of our many

options. Those who decide on hyst. , and I'm sure I speak for everyone, we

are not angered by your decision or think you made a wrong choice, we're just

determined to let you and everyone else know of the other options out there.

Sometimes it comes off a little strong . . . but sometimes you have to be

that way to get your message heard.

[Guest guest]

thanks for the reply and the info. This site along with my own research has

caused me to cancel my hyst. for now in order for me to explore other

options. The knowledge has allowed me to know that I don't have to rush and

make the decision right now as the Dr.'s led me to believe

RE: leaving the group

> wrote:

> I'm new to the group but I haven't truly gotten why people are leaving.

> Everything I've read as been presented in what appears to be from a place

of compassion. Am I wrong

> ----------

> , it's good to hear your impression as someone new to the group as

to how the discussion on hysterectomy sounds. I admit to being mystified as

to what taptap meant when she wrote: " I just wish it could be in a more

constructive manner so that it is fact based " as I felt what women were

saying about the potential problems with hysterectomy were fact-based. We

also discuss potential negative outcomes with UAE and myomectomy, so it's

not like we feel hysterectomy is the only procedure with potential negative

outcomes. Some of us do feel strongly that, depending on an individual's

circumstances, hysterectomy can be a drastic solution when there are more

conservative options available. But I don't see saying that as attacking

the person -- just asking them to think about the implications of an

irreversible procedure before they go ahead. And I would never withdraw my

support from a woman based on her treatment decision -- to me, each woman's

right to decide on the ap!

> !

> propriate treatment for her body is non-negotiable.

> Leonie

> --

> " I went into the phone booth and came out Lois Lane "

> Nuala O'Faolain on turning 50

>

>

>

> __________________________________________________________________

> Your favorite stores, helpful shopping tools and great gift ideas.

Experience the convenience of buying online with Shop@Netscape!

http://shopnow.netscape.com/

>

> Get your own FREE, personal Netscape Mail account today at

http://webmail.netscape.com/

>

>

>

[Guest guest]

I have a friend who had a hysterectomy in January. She is an old college

buddy, whom I just recently found, so I wasn't in touch with her in January.

I know she did a lot of research and decided on hysterectomy because she had

fibroids & endometriosis, was in a lot of pain and bleeding constantly. The

doctors weren't able to give her a definite answer whether she had cancer or

not. (I don't know the specifics on that one). I totally support her in her

decision, especially since she was suffering for so long. She tells me she

feels great now. The bleeding was making her weak and tired and the pain was

terrible. Now she is free of those things and feels much better. So it was

a GREAT decision for her.

I'm having a myomectomy in December. I took Lupron yesterday for the first

time. I am still researching. In fact last night I read in Dr. Stringer's

book that in some cases after using Lupron for 3 months a patient might be

able to have a laproscopic myo as opposed to the open myo. I emailed my

doctor today with this. He said if I see him in late November he will

re-assess the situation. So even though I have scheduled surgery I am not

through with my research. I am so hoping I can have it done laproscopically

.. . . !!!

If there's one thing I've learned in the last 1 1/2 years is you have to be

your own advocate when it comes to your body. Your doctor may be a very good

physician but he has lots of other patients and isn't thinking about you

24-hours a day. Most doctors, I believe, applaud patients who ask questions

and bring up other options they may have overlooked. Don't be afraid to ask

and suggest!!!

Day two of Lupron for me and I have no symptoms. :-)

[Guest guest]

Here's my story. After complaining of increasingly

heavy periods the nurse practioner I see put me on BC

pills to see if that would help. When it didn't she

set me up with the gyn at her office. I had a consult

with him where he discussed different causes and

treatments. Cancer was mentioned, fibroids were not,

but he thought that I probably basically had a build

up of the lining of the uterus and was really big on

the idea of an endometrial ablation. Then I had

endometrial biopsy which was negative. Next I had the

ultrasound which showed 2 fibroids. I returned to the

gyn to discuss my options. ( I wasn't too worried as

I knew that fibroids were benign tumors) I was

shocked when he recommended HYSTERECTOMY! And he said

if it was done before the fibroids got much bigger he

could do it vaginally, lucky me! He did not talk

about the effect of losing my cervix, having nerves

cut, bladder or sexual difficulties. He also said

that I could try the ablation first if I wanted to.

As you can imagine I was in shock and didn't remember

what he said about size and location of the fibroids.

The tears started when I got in my car to drive home.

I immediately got on the internet and found this group

within a couple of days. I got the names of gyns in

my area who had referred for UAE at a large hospital

in my state. The second gyn thought that the fibroids

were really too small to worry about right now and put

me on BC pills again. Finally after about a month of

phone calls, etc. the first gyn's office sent the

ultra sound report to the new doctor. Guess what?

The 2 fibroids that doc #1 wanted to remove my uterus

for are only about 1 inch big! One is submucuosal and

therefore probably causing the bleeding. I am going

to schedule for another ultrasound - one where they

fill the uterus with fluid first to confirm the

location. Then my new gyn may be able to remove it

hysterscopically - basically an outpatient procedure.

This is what is making many of us so mad about doctors

who do not cover ALL options to hysterectomy. I could

be sitting here now with no uterus, and who knows what

new problems. I consider it malpractice for that

first doctor to not have mentioned UAE and other

treatments to me.

__________________________________________________

[Guest guest]

Hi

Could you tell me the name of the book y Dr.Stringer.

I took the 3 month Lupron shot on Aug 27th. About 3 weeks later I started

experiencing hot flashes but no to bad. Hopefully you won't experience

anything .

Take Care

Re: RE: leaving the group

> I have a friend who had a hysterectomy in January. She is an old college

> buddy, whom I just recently found, so I wasn't in touch with her in

January.

> I know she did a lot of research and decided on hysterectomy because she

had

> fibroids & endometriosis, was in a lot of pain and bleeding constantly.

The

> doctors weren't able to give her a definite answer whether she had cancer

or

> not. (I don't know the specifics on that one). I totally support her in

her

> decision, especially since she was suffering for so long. She tells me

she

> feels great now. The bleeding was making her weak and tired and the pain

was

> terrible. Now she is free of those things and feels much better. So it

was

> a GREAT decision for her.

>

> I'm having a myomectomy in December. I took Lupron yesterday for the first

> time. I am still researching. In fact last night I read in Dr.

Stringer's

> book that in some cases after using Lupron for 3 months a patient might be

> able to have a laproscopic myo as opposed to the open myo. I emailed my

> doctor today with this. He said if I see him in late November he will

> re-assess the situation. So even though I have scheduled surgery I am not

> through with my research. I am so hoping I can have it done

laproscopically

> . . . !!!

>

> If there's one thing I've learned in the last 1 1/2 years is you have to

be

> your own advocate when it comes to your body. Your doctor may be a very

good

> physician but he has lots of other patients and isn't thinking about you

> 24-hours a day. Most doctors, I believe, applaud patients who ask

questions

> and bring up other options they may have overlooked. Don't be afraid to

ask

> and suggest!!!

>

> Day two of Lupron for me and I have no symptoms. :-)

>

>

>

>

>

[Guest guest]

All,

I'd be careful w/ anything from H. Stringer, from Chicago. I've

heard from another gyn specialist that Stringer is " questionable " .

- Debbie

Re: RE: leaving the group

> :

> " Uterine Fibroids: What Every Woman Needs to Know " H. Stringer,

MD.

>

> A lot of people online here have read and/or recommended this book. It's

> very good info on myo and hyst.

>

>

>

>

[Guest guest]

I feel the same way about the dr at the hospital who told me that if it was a

mass of fibroids in the uterus, they could only do a hysterectomy. And when I

replied with: What about UAE? , he said " oh, that could probably help, but we

don´t do that here " . I consider that withholding evidence. And that´s just a

fraction of the incredibly stupid things they have said to me... If I had the

energy I would write a formal complaint.

I would have been utterly lost without this group during these last months.

Re: RE: leaving the group

Here's my story. After complaining of increasingly

heavy periods the nurse practioner I see put me on BC

pills to see if that would help. When it didn't she

set me up with the gyn at her office. I had a consult

with him where he discussed different causes and

treatments. Cancer was mentioned, fibroids were not,

but he thought that I probably basically had a build

up of the lining of the uterus and was really big on

the idea of an endometrial ablation. Then I had

endometrial biopsy which was negative. Next I had the

ultrasound which showed 2 fibroids. I returned to the

gyn to discuss my options. ( I wasn't too worried as

I knew that fibroids were benign tumors) I was

shocked when he recommended HYSTERECTOMY! And he said

if it was done before the fibroids got much bigger he

could do it vaginally, lucky me! He did not talk

about the effect of losing my cervix, having nerves

cut, bladder or sexual difficulties. He also said

that I could try the ablation first if I wanted to.

As you can imagine I was in shock and didn't remember

what he said about size and location of the fibroids.

The tears started when I got in my car to drive home.

I immediately got on the internet and found this group

within a couple of days. I got the names of gyns in

my area who had referred for UAE at a large hospital

in my state. The second gyn thought that the fibroids

were really too small to worry about right now and put

me on BC pills again. Finally after about a month of

phone calls, etc. the first gyn's office sent the

ultra sound report to the new doctor. Guess what?

The 2 fibroids that doc #1 wanted to remove my uterus

for are only about 1 inch big! One is submucuosal and

therefore probably causing the bleeding. I am going

to schedule for another ultrasound - one where they

fill the uterus with fluid first to confirm the

location. Then my new gyn may be able to remove it

hysterscopically - basically an outpatient procedure.

This is what is making many of us so mad about doctors

who do not cover ALL options to hysterectomy. I could

be sitting here now with no uterus, and who knows what

new problems. I consider it malpractice for that

first doctor to not have mentioned UAE and other

treatments to me.

__________________________________________________