my surgery

[Guest guest]

> Well....I posted to this group on two occassions and no one ever

> responded to my queries.

Not true. In checking the archives for this support group, I know you

joined have been lurking since October 2003. On January 13, 2004 you

posted your story -- a single email. Within days, you received two

online and archived responses from members of this group -- including

an extremely comprehensive one here:

http://health.groups.yahoo.com/group/uterinefibroids/message/44412

Perhaps you missed the above message to you or there was an oversight

on the Daily Digest that day -- but I do hope you take the time to

read it now and get back to us with your further questions.

My best to you,

Carla Dionne

Executive Director

National Uterine Fibroids Foundation

[Guest guest]

Regal1D,

Hi, just reading your post. Sorry that you haven't found the

support you really could have used, but don't give up! If you don't

find it here, I'm sure there are other groups! One thing I've

noticed about this group is that it is so large, that a lot of times

it takes time to get things posted if at all. I also belong to the

embo group and have found it to be much quicker in response, and

also more personel to since you do get to know the women with less

posting. Anyway, just wondering about your fibroid symtoms. What

have been your major symtoms? You said you haven't had any of the

major symtoms aside from having a very large fibroid. Jen

> Well....I posted to this group on two occassions and no one ever

> responded to my queries. I have a surgery (hysterectomy)

scheduled

> for Tuesday (2/17). I believe, at this point, that it is the best

> option for me. I have nine fibroids, the largest is around 18 cm

in

> diameter. God has truly blessed me, in that I do not have ANY of

> the " typical " symptoms that are associated with this

condition....no

> lengthy periods, no large clots or tissue passage, no painful

sexual

> intercourse.....nothing. I am 45 years old, have never had any

> children, though I have wanted them all my life. I explored every

> option available to me, and with the help of my doctor sought out

a

> specialists (actually he is my doctor's gynecologist). I have

prayed

> and sought the advice/support from my family and friends. I just

> thought that a group with a dedicated purpose, to inform and

provide

> a forum through which one could gain knowledge and support would

> provide more for ME. I joined this group seeking SUPPORT, and

found

> none for me. I do applaud you all for not only the details but

also

> the sensitivity you provide to the people you find interesting

enough

> to respond to, but feel completely left out within this forum. I

am

> the type of person who will refer this group to others who might

be

> seeking what I have seen you give to others....I guess I just

showed

> up as " clutter " .

> REGAL1D

[Guest guest]

I think I just responded and lost the message halfway through! I am

replying to you only as I find the boards have a bit of bias in favor

of alternative procedures, understandable in the younger groups I

suppose. All of us who are choosing hyster. seem to have to say " the

best option for me... " somewhere in the message. I'm 53; mine's

scheduled for April. At first I wanted the UAE or myo, then I kept

reading and reading, and consulted two doctors, one of whom

specializes in alternative procedures. Both recommended the hysterect

(leaving ovaries and cervix) and after a while I agreed with that,

realizing how uncomfortable I am (with years of having a 20-24 week

enlarged uterus and 4 or 5 fibroids).

I just wanted to say best of luck with your procedure. I wouldn't

give up on the group, though; there's lots of good reading!

Kim

> Well....I posted to this group on two occassions and no one ever

> responded to my queries. I have a surgery (hysterectomy) scheduled

> for Tuesday (2/17). I believe, at this point, that it is the best

> option for me. I have nine fibroids, the largest is around 18 cm

in

> diameter. God has truly blessed me, in that I do not have ANY of

> the " typical " symptoms that are associated with this

condition....no

> lengthy periods, no large clots or tissue passage, no painful

sexual

> intercourse.....nothing. I am 45 years old, have never had any

> children, though I have wanted them all my life. I explored every

> option available to me, and with the help of my doctor sought out a

> specialists (actually he is my doctor's gynecologist). I have

prayed

> and sought the advice/support from my family and friends. I just

> thought that a group with a dedicated purpose, to inform and

provide

> a forum through which one could gain knowledge and support would

> provide more for ME. I joined this group seeking SUPPORT, and

found

> none for me. I do applaud you all for not only the details but

also

> the sensitivity you provide to the people you find interesting

enough

> to respond to, but feel completely left out within this forum. I

am

> the type of person who will refer this group to others who might be

> seeking what I have seen you give to others....I guess I just

showed

> up as " clutter " .

> REGAL1D

[Guest guest]

REGAL1D

I'm sorry your posts didn't get answered. It can be frustrating and

you're not the only one and it's nothing personal. It's just there's

an awful lot of traffic on this site and sometimes we simply don't

know the answer to a question on some topics. For instance, I can't

help with anything specific to the American healthcare system.

Feel free to email me on anything and I'll give you my best guess or

look things up in books I've got.

Here are some other forums to try, if you don't get answers here:

Yahoo HealingFibroidsNaturally

Hyster Sisters

The Fibroid Place

Smartgroups UK & Ireland

(Some of the addresses should be in the links here or on Carla's

home page.)

Good luck with your operation!

Aztek

[Guest guest]

Hey There!

Sorry..that you did not rec. a reply the first time you

posted.....sometimes it happens.

I just wanted to let you know that I too had really large

fibroids...1 football and 1 soccer ball...and a bunch inbetween.

Anyway...I went in for a myo in December but ended up with a

hysterectomy....my fibroids were so invasive that my Dr. did not

believe that he could have reconstructed the uterus in a way that it

would have been viable. It was a big surgery with a large vertical

incision....but I have recovered with relative ease and felt really

good from week 4 on.

If you have any questions feel free to e-mail me or post to me here

online. I would be more than happy to answer any questions! Also,

hystersisters.com is an EXCELLENT resource. Again, sorry you did not

get a reply to your first post.....I am sure it was not

intentional!

> Well....I posted to this group on two occassions and no one ever

> responded to my queries. I have a surgery (hysterectomy) scheduled

> for Tuesday (2/17). I believe, at this point, that it is the best

> option for me. I have nine fibroids, the largest is around 18 cm

in

> diameter. God has truly blessed me, in that I do not have ANY of

> the " typical " symptoms that are associated with this

condition....no

> lengthy periods, no large clots or tissue passage, no painful

sexual

> intercourse.....nothing. I am 45 years old, have never had any

> children, though I have wanted them all my life. I explored every

> option available to me, and with the help of my doctor sought out a

> specialists (actually he is my doctor's gynecologist). I have

prayed

> and sought the advice/support from my family and friends. I just

> thought that a group with a dedicated purpose, to inform and

provide

> a forum through which one could gain knowledge and support would

> provide more for ME. I joined this group seeking SUPPORT, and

found

> none for me. I do applaud you all for not only the details but

also

> the sensitivity you provide to the people you find interesting

enough

> to respond to, but feel completely left out within this forum. I

am

> the type of person who will refer this group to others who might be

> seeking what I have seen you give to others....I guess I just

showed

> up as " clutter " .

> REGAL1D

[Guest guest]

Hi- Hope everything goes well with your surgery on Tues. I think

there is an anti-hysterectomy bias on this board, but it we all need

support no matter which decision we make. I'm sure this choice will

be the right one for you. As others have mentioned, the hyster city

yahoo support board will surely give you a warm welcome and lots of

advice. Again- best of luck! -Mindy

> Well....I posted to this group on two occassions and no one ever

> responded to my queries. I have a surgery (hysterectomy) scheduled

> for Tuesday (2/17). I believe, at this point, that it is the best

> option for me.

> REGAL1D

[Guest guest]

I think that the comments you see against hysterectomy are much more

a bias against " uninformed forced hyst " vs. against any women who

makes an INFORMED choice to have hysterectomy. It breaks my heart

to read the postings of so many women here whose doctors jump to

recommend hysterectomy - and only this option - as the treatment

available to them for fibroids, when so many other less-invasive and

effective treatment options do exist.

I have met a number of the women on this board, including Carla,

Pat, Leonie, and others, who take the time, again and again, to

point out the potential issues associated with hysterectomy, correct

misinformation posted on the board, etc. None of them have

impressed me as people who are staunchly anti-hysterectomy; rather,

they have greatly impressed me as caring women who give freely of

their personal time for no renumeration and seek to ensure that

women with fibroids receive ACCURATE and COMPLETE information about

ALL viable treatment options available to them.

It's unfortunate that some women posting here feel " left out " if

they don't receive responses to their messages. There are several

possible reasons - problems with e-mail and the Yahoo group

postings, which Carla already identified for you. Additionally, due

to the large volume, many of us have no choice but to quickly skim

the digests (which in total could represent 75+ messages/day) and

respond if we think we can be of help. For me, as my only treatment

has been a myo and I was lucky not to suffer from heavy bleeding,

anemia, etc., I tend to respond to those looking for insights about

the myomectomy, or anyone seeking referrals in southern CA (where I

live). I would guess that many women here have full-time jobs and

family responsibilities that leaves them with little time to fully

read and respond to every posting. I also know that my available

time to read the fibroid board postings varies greatly as I manage

two businesses from my home office.

Best wishes!

> > Well....I posted to this group on two occassions and no one ever

> > responded to my queries. I have a surgery (hysterectomy)

scheduled for Tuesday (2/17). I believe, at this point, that it is

the best

> > option for me.

> > REGAL1D

[Guest guest]

I am sorry you did not get more post or feel that you

did not recieve support but please remember that some

of us are dealing with extreme situations too and we

can get lost in those moments. It is hard some days

just to get out of bed. None of us who are dealing

with this should ever feel alone though. I hope that

you are holding strong for your surgery. If the

stress as the time gets to you IM or email. Also

remember to get stuff you need off the floor and lay

in a supply of good reading materials or movies.

e

[Guest guest]

Regal1d ,

I know how you feel. I also don't often get responses to my posts on

this board or the embo board. Although when I first joined this group

and the embo group I did get replys to a very critical question that

helped me make a decision. Since I had my UAE and I post I get almost

no replies. So I know how you might feel like an outsider. Some get

tons of replies to any posting. Oh well, I guess that is just the way

it is.

I just want to let you know that I wish you well and will pray that

all goes well with your surgery on Tuesday. It appears that you have

made an informed decision and one that is best for you. Though I opted

for uae and not hysterectomy feel free to write me offline if you just

need a fibroid sister to share with. I always respond to my email.

Best wishes and may God bless you

Carmon

[Guest guest]

Mindy,

It's not that we are anti-hysterectomy. We are Pro-Uterus. There is a big

difference. Once your uterus is gone - it's gone. Before any woman agrees to

the removal of a major organ, in this case - her uterus, I believe it is

necessary that all other options be reviewed and considered.

Joyce

Re: My surgery

Hi- Hope everything goes well with your surgery on Tues. I think

there is an anti-hysterectomy bias on this board, but it we all need

support no matter which decision we make.

> I have a surgery (hysterectomy) scheduled for Tuesday (2/17)

[Guest guest]

Regal1d:

Sorry to hear that you felt you received no support from this group. Sometimes

there is the same type of question from several different group members and you

will find one or more responses regarding that topic, but perhaps directed to

only one of the inquirers. It is not meant as a slight to you or to any one

individual. You and your inquiries ARE important.

But, most importantly, did you say that you have no symptoms at all - and yet

you are going ahead with a hysterectomy? In my opinion, the removal of such a

major organ should either be to save your life, or to relieve unbearable

symptoms. Not only that, you are 45 years old - menopause is not far away.

Your symptom-less fibroids will begin to dissipate on their own. Take an

opportunity this weekend to surf the net and research the consequences of a

hysterectomy. And then ask yourself, would you rather have your current

symptoms (which are none), or the resulting symptoms after a hysterectomy. It's

not February 17th yet - you still have a chance to pick up the phone and cancel.

It's YOUR uterus.

Good luck!

Joyce

[Guest guest]

Hi,

I agree. I also would like to think this group is for choice too and too many

women are only given hyst as a option. Where's the choice in that? I just read

that they believe the uterus helps the body's immune system fight off disease.

Is this something you want to cut out when other options are available? The

truth is they don't know everything about the uterus, hormones and just how and

what everything does and works.

Ku

Joyce Moss jmoss3@...> wrote:

Mindy,

It's not that we are anti-hysterectomy. We are Pro-Uterus. There is a big

difference. Once your uterus is gone - it's gone. Before any woman agrees to

the removal of a major organ, in this case - her uterus, I believe it is

necessary that all other options be reviewed and considered.

Joyce

[Guest guest]

Joyc

I was just trying to be supportive of the original poster. I'm

also " pro-uterus " - that's why I just had a myo at age 49 against my

doctor's advice.I was determined to keep my uterus! However, it's

obvious that there is an anti-hysterctomy bias on this board, as

there should be in the case of unnecessary hysterctomies. My point

was they can be the best choice in some cases, and those women desrve

our support as much as anyone else who joins this group.

-Mindy

> Mindy,

>

> It's not that we are anti-hysterectomy. We are Pro-Uterus. There

is a big difference. Once your uterus is gone - it's gone. Before

any woman agrees to the removal of a major organ, in this case - her

uterus, I believe it is necessary that all other options be reviewed

and considered.

[Guest guest]

However, it's

> obvious that there is an anti-hysterctomy bias on this board, as

> there should be in the case of unnecessary hysterctomies.

um, I would call it an " anti-unnecessary-hysterectomy bias " . But,

then would take exception to the word " bias " ....as it would seem we

should ALL have an " anti-unnecessary-procedure " perspective. Not a

bias -- an intelligent, well thought out, perspective. Regarding ALL

of medicine. Not just hysterectomy. I'm also against unnecessary

look-see hysteroscopies and laparoscopies. Unnecessary d&c.

Unnecessary procedures performed simply because a fibroid is present

but not causing any symptoms to the patient.

If a procedure is truly not needed OR there exists a simpler,

less-invasive procedure, then yeah, I have a bias against the quick

fix of hysterectomy. No doubts about that. And it isn't going away

any time soon. I truly do not understand why more women are not

embracing this perspective on unnecessary procedures and asking more

questions and pushing back against doctors who would take their bodies

for granted (as income) in this way. I just don't.

> My point

> was they can be the best choice in some cases, and those women desrve

> our support as much as anyone else who joins this group.

Absolutely. In total agreement with you. The tricky part lies in how

we go about asking questions of each other to fully understand the

" choices " being made and assisting with offering MORE information to

broaden perspective over those " choices. " Too often this is looked

upon as being unsupportive when more often it is simply a query of the

situation for broader understanding of the choice -- and possibly

finding gaps in knowledge that we might want to share with the person

who has made " the choice " (whatever that choice might be). Having

been on the defensive for " my choice " ....as we all most likely have at

one time or another...it can be a difficult process on both sides of

the communication fence. I truly and sincerely doubt, however, that

anyone approaches this process thinking about how NOT to support

another individual in THEIR choice.

Communication is an art with far too many nuances...humans have a

tough time with this IN PERSON and the internet seems to only make it

worse sometimes... Still, I have to believe that hardly anyone truly

approaches this with mean spirits or deliberate attempts at

sabbotaging support.

I wonder what role the simple fact that so many of us find ourselves

on the defense with gyns, nurses, family members, etc., and fighting

for keeping our own uterus plays on how we communicate our own

thoughts about this process of choosing a treatment...I would

surmise....a HUGE role....

Also, lacking the personal touch of facial expressions, body language,

and tone, our own sensitivities creep in and define another's email

using our own personal sensitivity template. May not be what the

other person intended at all...

Oh, and add to all that...those needing support who haven't received

treatment yet...are hammered with symptoms that may not make for the

clearest thinking...but may contribute to the highest sensitivity

levels they've ever experienced before in their lives...

This group is to be commended for the support it gives to women under

these most difficult circumstances of incomplete communication tools,

active health issues, and complex information overload blurring even

the clearest of thinker's minds.

Nothing anyone writes to this message board about " lack of support "

will ever convince me that it is true. I've seen far too much over

the past 5+ years and the women of this support group during that time

have helped thousands and thousands of other suffering women. We

can't be everything to everyone though -- which is why I am highly

supportive of the multitude of other support groups online. If this

support group doesn't fit your thought processes or personality, there

is no need to be angry over it. Simply find a support group that DOES

fit you and gives you what you believe you need. Or, create your own.

Carla Dionne

[Guest guest]

Quite often, members of this list get support that others don't see. When

someone says she's considering a hysterectomy, I might send her a message

to make sure she's aware of the risks. As others have mentioned, being able

to make an informed decision is very important. If a woman says she's just

had a hysterectomy, I often send her a private message congratulating her

on the surgery and sending my wishes for a speedy recovery.

Cheryl

At 03:20 PM 2/15/2004 +0000, you wrote:

>Joyc

>I was just trying to be supportive of the original poster. I'm

>also " pro-uterus " - that's why I just had a myo at age 49 against my

>doctor's advice.I was determined to keep my uterus! However, it's

>obvious that there is an anti-hysterctomy bias on this board, as

>there should be in the case of unnecessary hysterctomies. My point

>was they can be the best choice in some cases, and those women desrve

>our support as much as anyone else who joins this group.

[Guest guest]

hey group members i want to know who in Ohio will be able to come support me

when i have my surgery on January 22,2007 at sycamore hospital at 8:00? who is

willing to walk the halls with me? i guess i,m asking for angels .add your name

to this email if you can attend. i,ll email everyone a picture so you will know

who i am. thanks peeps .

sharmin or cookie hugs and kisses much love to you

[Guest guest]

Sharmin,

Are you having it done at Sycamore Hospital near Dayton?

If so, I would love to be there for you!!

I live in Beavercreek, where are you?

I hope to have my surgery in February...

looks like it will be in Springfield with Dr. Spier.

Joanie

[Guest guest]

Hmm. That's a 6hr drive for me. Kinda far at that time of year. I do

have a lot of co-workers at our Dayton facility near there though for

what that's worth.

Mike in GR

>

> hey group members i want to know who in Ohio will be able to come

support me when i have my surgery on January 22,2007 at sycamore

hospital at 8:00? who is willing to walk the halls with me? i guess i,m

asking for angels .add your name to this email if you can attend. i,ll

email everyone a picture so you will know who i am. thanks peeps .

>

> sharmin or cookie hugs and kisses much love to you

>

>

[Guest guest]

are you coming then

Mike websculpt@...> wrote: Hmm. That's a 6hr drive for me. Kinda

far at that time of year. I do

have a lot of co-workers at our Dayton facility near there though for

what that's worth.

Mike in GR

>

> hey group members i want to know who in Ohio will be able to come

support me when i have my surgery on January 22,2007 at sycamore

hospital at 8:00? who is willing to walk the halls with me? i guess i,m

asking for angels .add your name to this email if you can attend. i,ll

email everyone a picture so you will know who i am. thanks peeps .

>

> sharmin or cookie hugs and kisses much love to you

>

>

[Guest guest]

Sharmin,

I really wish I could and I would, but like Mike.....Its a LONG drive,

about three days or so! Ill be thinking of you and wishing you the best!!

Mike T

Re: Re: my surgery

> are you coming then

>

> Mike websculpt@...> wrote: Hmm. That's a 6hr drive for me.

> Kinda far at that time of year. I do

> have a lot of co-workers at our Dayton facility near there though for

> what that's worth.

>

> Mike in GR

>

>

>>

>> hey group members i want to know who in Ohio will be able to come

> support me when i have my surgery on January 22,2007 at sycamore

> hospital at 8:00? who is willing to walk the halls with me? i guess i,m

> asking for angels .add your name to this email if you can attend. i,ll

> email everyone a picture so you will know who i am. thanks peeps .

>>

>> sharmin or cookie hugs and kisses much love to you

>>

>>

[Guest guest]

Sharmin I would love to be there for you but its not geographically

desirable since I'm in TN. But, I will be there with you in spirit if

that counts. Happy Holidays. Sherry

>

> >

> > hey group members i want to know who in Ohio will be able to come

> support me when i have my surgery on January 22,2007 at sycamore

> hospital at 8:00? who is willing to walk the halls with me? i guess

i,m

> asking for angels .add your name to this email if you can attend.

i,ll

> email everyone a picture so you will know who i am. thanks peeps .

> >

> > sharmin or cookie hugs and kisses much love to you

> >

> >

[Guest guest]

thank you sherry

sherrya_neal sherrya_neal@...> wrote: Sharmin I would love to be

there for you but its not geographically

desirable since I'm in TN. But, I will be there with you in spirit if

that counts. Happy Holidays. Sherry

>

> >

> > hey group members i want to know who in Ohio will be able to come

> support me when i have my surgery on January 22,2007 at sycamore

> hospital at 8:00? who is willing to walk the halls with me? i guess

i,m

> asking for angels .add your name to this email if you can attend.

i,ll

> email everyone a picture so you will know who i am. thanks peeps .

> >

> > sharmin or cookie hugs and kisses much love to you

> >

> >

[Guest guest]

I don't think so. It's a little too cold that time of year to do my

trick of sleeping, changing and cleaning up at a rest area. The idea

of driving 6hrs down, saying hi and then driving 6hrs back sounds

rough too.

You could get really wild and call one of us from your room with your

phone/room number and ask that we post it here. I would be up for

calling you to see how it went. I'll bet your phone would be ringing

off the hook with well wishers.

It does look like one person who is closer might be able to make it

which would be cool.

> >

> > hey group members i want to know who in Ohio will be able to come

> support me when i have my surgery on January 22,2007 at sycamore

> hospital at 8:00? who is willing to walk the halls with me? i guess

i,m

> asking for angels .add your name to this email if you can attend.

i,ll

> email everyone a picture so you will know who i am. thanks peeps .

> >

> > sharmin or cookie hugs and kisses much love to you

> >

> >

[Guest guest]

I'm not in OH but I will be praying for you Sweet Pea!!!

Hugs!!!!

>

> hey group members i want to know who in Ohio will be able to come

support me when i have my surgery on January 22,2007 at sycamore

hospital at 8:00? who is willing to walk the halls with me? i guess

i,m asking for angels .add your name to this email if you can attend.

i,ll email everyone a picture so you will know who i am. thanks peeps .

>

> sharmin or cookie hugs and kisses much love to you

>

>