New Member

[Guest guest]

Hi, Robin my doctor appt went good yesterday. The doctor I saw is Dr

Sved he is located at 655 Bay St in Toronto. I feel really

comfortable with him. He is the only doctor that told me that my

fibroid on my last ultrasound was measuring 19 cm and also told me

that it was bigger than that now. At the last ultrasound my uterus

was measuring 20 weeks gestation and now it is measuring 24 weeks

gestation. He did mention having UAE done but with my age and desire

for children he recommended me to have the myomectomy done. This

doctor he was very honest with me about the UAE, I don't know how

many cases of UAE has been performed, but only one has got pregnant

afterwards and that was just last week. Hopefully this will help. You

can email me anytime to just talk..loneyprpn@....

> > Hi, I found out last year in May that I had one large fibroid on

> the

> > anterior wall of my uterus. I just turned 28 last december and I

> > don't have any children right now but would like to in the

future.

> I

> > have seen two gynecologists where I live: Oshawa, Ontario, Canada

> and

> > they both have told me that my only option was to have a

> hysterectomy

> > or to have the uterine artery embolization done. I go on the 21st

> of

> > this month to see another gynecologist up in Toronto and

hopefully

> he

> > can tell me differently. I only thing that I want to have done is

> the

> > myoectomy; just to have to fibroid removed. I have heard so much

> > about the UAE and I know it is not for me. Last July my uterus

was

> > the size of a 20 week pregnancy and now I think it is the size of

a

> > 24 to 25 week pregnancy and before may of last year there was no

> > evidence of me having one. Since May of last year I have had 6

> > ultrasounds done, a CAT scan, a MRI, and in December I had a fine

> > needle biopsy done on the fibroid to see if it was cancer. I even

> had

> > blood work done, and the ones the doctor did was cancer markers.

> The

> > only problems that this single fibroid is causing is that I have

> alot

> > of cramping and back pain during the first couple of days when my

> > period starts. Oh I forgot to mention the the fibroid is

intramural

> > and the ultrasound shows that it covers the whole anterior

(front)

> > wall of my uterus. I hate having it because it has changed the

> > outlook on my future quite alot and I have my good days and my

bad

> > days too. If I see a pregnant women or even babies I feel like

> crying

> > because I just don't know if I am going to have my own children

> some

> > day. Need support and answers what would be the best for me.

> >

> >

[Guest guest]

Hi, Robin my doctor appt went good yesterday. The doctor I saw is Dr

Sved he is located at 655 Bay St in Toronto. I feel really

comfortable with him. He is the only doctor that told me that my

fibroid on my last ultrasound was measuring 19 cm and also told me

that it was bigger than that now. At the last ultrasound my uterus

was measuring 20 weeks gestation and now it is measuring 24 weeks

gestation. He did mention having UAE done but with my age and desire

for children he recommended me to have the myomectomy done. This

doctor he was very honest with me about the UAE, I don't know how

many cases of UAE has been performed, but only one has got pregnant

afterwards and that was just last week. Hopefully this will help. You

can email me anytime to just talk..loneyprpn@....

> > Hi, I found out last year in May that I had one large fibroid on

> the

> > anterior wall of my uterus. I just turned 28 last december and I

> > don't have any children right now but would like to in the

future.

> I

> > have seen two gynecologists where I live: Oshawa, Ontario, Canada

> and

> > they both have told me that my only option was to have a

> hysterectomy

> > or to have the uterine artery embolization done. I go on the 21st

> of

> > this month to see another gynecologist up in Toronto and

hopefully

> he

> > can tell me differently. I only thing that I want to have done is

> the

> > myoectomy; just to have to fibroid removed. I have heard so much

> > about the UAE and I know it is not for me. Last July my uterus

was

> > the size of a 20 week pregnancy and now I think it is the size of

a

> > 24 to 25 week pregnancy and before may of last year there was no

> > evidence of me having one. Since May of last year I have had 6

> > ultrasounds done, a CAT scan, a MRI, and in December I had a fine

> > needle biopsy done on the fibroid to see if it was cancer. I even

> had

> > blood work done, and the ones the doctor did was cancer markers.

> The

> > only problems that this single fibroid is causing is that I have

> alot

> > of cramping and back pain during the first couple of days when my

> > period starts. Oh I forgot to mention the the fibroid is

intramural

> > and the ultrasound shows that it covers the whole anterior

(front)

> > wall of my uterus. I hate having it because it has changed the

> > outlook on my future quite alot and I have my good days and my

bad

> > days too. If I see a pregnant women or even babies I feel like

> crying

> > because I just don't know if I am going to have my own children

> some

> > day. Need support and answers what would be the best for me.

> >

> >

[Guest guest]

Check out this site:

http://www.hystersisters.com/

(Hyster Sisters)

You can tell them your story and see what they have to say from the

point of view of having had a hysterectomy. It's a good site.

For a site that is against hysterectomy, check out this one.

http://www.ccon.com/hers/

HERS-Hysterectomy Education and Research Services. They provide

physician referrals, counseling and educational materials to help

women save their uteruses and to help women deal with the

consequences of hysterectomy.

A good book on the effects of hysterectomy on long-term health is:

" The Ultimate Rape " by Plourde.

http://www.newvoice.net/why.html It contains extensively researched

information on hormone changes after hysterectomy.

If you plan to have your ovaries removed, read these two excellent

books on Natural hormone replacement. Standard HRT contains compounds

that are chemically different than human hormones resulting in it's

many side effects. NHRT uses hormones that exactly match human

hormones. Drug companies have little interest in the naturals,

because they are not patentable and thus not profitable. NHRT is more

extensively used in Europe. These books give information on finding

an experienced NHRT doctor, also.

" Natural Woman, Natural Menopause "

Marcus Laux, Conrad; Paperback; @ $11.70 each from

amazon.com

" Natural Hormone Replacement For Women Over 45 "

V. , Morgenthaler (Contributor); Paperback; @

$8.95 each from amazon.com

Tish

[Guest guest]

In your situation I would give serious consideration to UAE (Uterine

Arterial Embolization). You can get information on it from

www.nuff.org or Carla's web site, www.uterinefibroids.com and also

from another group on yahoo groups for people who have had or are

considering UAE. It's relatively new but mature enough that it

doesn't look like the fibroids grow back the way they can with

myomectomies.

There are lots of procedures that are options if you don't want to

have the hysterectomy but most of them don't stop the fibroids from

growing long term, they just delay the problem until menopause. UAE

seems to solve it permanently.

Another option is some of the clinical trials going on for

progestrone antagonists or agonists. They can stop the growth and

even shrink fibroids but don't seem to have the side effects of

Lupron that prohibit people from taking them long term.

There's some information in the archives here on the trial for RU486

if you are interested in going that way.

DeAnn

> Hi! I am a new member to your group. I have had

> fibroids since 1983. Mostly undiagnosed until 1993.

> For the first ten years I was put on the pill, and

> anaprox. Being a teen, I guess they thought I should

> just deal with it. The word fibroids was never

> mentioned. In 1993, new insurance lead me to a new

> doctor who did diagnose me. She did a vaginal

> myomecytomy. A few months later when I had symptoms

> again, she said, " I have cured you. I don't even

> need to look. " ...

> Anyone else had a similar story? Do I have the

> hysterectomy? Am I over-reacting. Do I wait 6 more

> months to see how much more grows (keep in mind I went

> from a few to a full uterus in 6 mos.) I am a teacher

> and could get it over with this summer, instead of

> finding out mid year I have to...

>

> Sorry to ramble on. Your the first similar people I

> have ever had the chance to talk to. I hope this is

> how your group works. I am also new to on-line, so

> I'm not sure.

>

> Elise

>

> __________________________________________________

>

[Guest guest]

In your situation I would give serious consideration to UAE (Uterine

Arterial Embolization). You can get information on it from

www.nuff.org or Carla's web site, www.uterinefibroids.com and also

from another group on yahoo groups for people who have had or are

considering UAE. It's relatively new but mature enough that it

doesn't look like the fibroids grow back the way they can with

myomectomies.

There are lots of procedures that are options if you don't want to

have the hysterectomy but most of them don't stop the fibroids from

growing long term, they just delay the problem until menopause. UAE

seems to solve it permanently.

Another option is some of the clinical trials going on for

progestrone antagonists or agonists. They can stop the growth and

even shrink fibroids but don't seem to have the side effects of

Lupron that prohibit people from taking them long term.

There's some information in the archives here on the trial for RU486

if you are interested in going that way.

DeAnn

> Hi! I am a new member to your group. I have had

> fibroids since 1983. Mostly undiagnosed until 1993.

> For the first ten years I was put on the pill, and

> anaprox. Being a teen, I guess they thought I should

> just deal with it. The word fibroids was never

> mentioned. In 1993, new insurance lead me to a new

> doctor who did diagnose me. She did a vaginal

> myomecytomy. A few months later when I had symptoms

> again, she said, " I have cured you. I don't even

> need to look. " ...

> Anyone else had a similar story? Do I have the

> hysterectomy? Am I over-reacting. Do I wait 6 more

> months to see how much more grows (keep in mind I went

> from a few to a full uterus in 6 mos.) I am a teacher

> and could get it over with this summer, instead of

> finding out mid year I have to...

>

> Sorry to ramble on. Your the first similar people I

> have ever had the chance to talk to. I hope this is

> how your group works. I am also new to on-line, so

> I'm not sure.

>

> Elise

>

> __________________________________________________

>

[Guest guest]

you poor dear, you've been through a lot. I would chat a bit with the good folks

here, mull it over,

talk with your husband, and then go inward and feel what's the best course of

action for you. gg

Elise Metric wrote:

> Hi! I am a new member to your group. I have had

> fibroids since 1983. Mostly undiagnosed until 1993.

> For the first ten years I was put on the pill, and

> anaprox. Being a teen, I guess they thought I should

> just deal with it. The word fibroids was never

> mentioned. In 1993, new insurance lead me to a new

> doctor who did diagnose me. She did a vaginal

> myomecytomy. A few months later when I had symptoms

> again, she said, " I have cured you. I don't even

> need to look. " I cried and left her office for good.

> A few months later ( I was also trying to get pregnant

> now) I went to an infertility doctor. He found I had

> a tumor 1/2 the size of my uterus (as well as many

> smaller ones). He put me on a drug that made me bleed

> for 3 months (can't remember name), then he did a

> laproscope and was supposed to do a vaginal myomectomy

> (with the idea that they had shrunk to a significant

> amount) or he would do an abdominal myomectomy if need

> be. During the operation, he came to tell my husband

> that it was worse then he originally thought. My

> husband had to decide if he should go on (and I would

> possibly need an emergency hysterectomy if I bled too

> much - and the doctor was fearful of this). My

> husband said to stop the operation. For the next 3

> months I received lupron shots. It wasn't so bad,

> only some hot flashes. Next, I had the abdominal

> myomectomy. Very successful. Tumor free for about 5

> years. Never did conceive. Ended up my husband had

> additional problems. We adopted a beautiful daughter!

> I have no regrets about that. Now I have been

> rediagnosed with fibroids. My yet again new doctor,

> put me on a six month watch. I went from 2 small ones

> to a uterus full of them. I have the usual heavy

> bleeding, bloating, pressure, and constipation/diahrea

> problems. I'm ready for a hysterectomy. We are not

> planning on any kids due to my husbands situation. I

> do not want to go through myomectomies every 5 years

> or so (I keep reading in different sources that is

> about the average grow back time), and I am adopted,

> so I have no idea about my genetics (I'm very fearful

> of female cancers). Also, as a strange sidenote, I

> had endometriosis on my lung in 1986 (first case at

> least at the University of Michigan). It caused my

> lung to collapse once a month with my cycle. So

> needless to say, I'm scared and tired of all the wierd

> female stuff in my body.

>

> Anyone else had a similar story? Do I have the

> hysterectomy? Am I over-reacting. Do I wait 6 more

> months to see how much more grows (keep in mind I went

> from a few to a full uterus in 6 mos.) I am a teacher

> and could get it over with this summer, instead of

> finding out mid year I have to...

>

> Sorry to ramble on. Your the first similar people I

> have ever had the chance to talk to. I hope this is

> how your group works. I am also new to on-line, so

> I'm not sure.

>

> Elise

>

> __________________________________________________

>

[Guest guest]

Thanks for the support!

Elise

--- GG Schaumburg wrote:

> god bless all middle school teachers. I could never

> do that. I have an adolescent boy. my solution is

> to put them all to ground , to run feral in the

> australian outback until they grow up and regain

> their senses. I have the utmost respect for

> teachers. each person's answer to this dilemma must

> be

> tailored for them. make a guily pinata and smash the

> ....er heck out of it. gg

>

> Lucy Hocking wrote:

>

> > Elise-

> >

> > I'm a teacher also and trying to schedule

> procedures when it is

> > convenient (if ever) for me. Remember we are

> professionals, too, and

> > entitled to schedule things around our own

> students/patients.

> >

> > I am just having a uterine biopsy next week

> (just?! :0) And with my

> > grandmother dying of uterine cancer and me almost

> 50 I woudl rather be

> > with out my uterus than deal with more

> interruptions and worries. I

> > know this may sound simplistic, but I am only

> speaking for me. I do

> > have a 7 year old son and I want to be around to

> see him grow up -- the

> > uterus I can do without I believe.

> >

> > That's my two-cents worth. You need to think of

> whatever is best for

> > YOU and your family. I know as a teacher you

> think of your students as

> > well. Mom guilt, daughter guilt, teacher

> guilt...I should start a

> > patchwork guilt society!

> >

> > Take care of YOU! There is already a teacher

> shortage you know!

> >

> > Lucy (middle school teacher- that may explain the

> Attitude!)

> >

> >

[Guest guest]

Hello Cyndi,

Gosh, you have endured so much in such a short

time with your reproductive organs...But thank goodness,

there you are holding your little miracle baby. Congratulations!

First things first-you really need to get a handle on the cancerous

cells. How were you diagnosed? Was it a pap smear, have you had

3-4 consecutive smears with suspicious cells? Have you had a

cone biopsy? Where are the cells? Did the gynecologist

perform a CA125 test? I know you trust your

gynecologist, especially after the bleed episode/poor response

by your then primary care physician(?) following the miscarriage.

....and I'm sorry you had to endure that also. But you may want to

also have a consult with a gynecological oncologist if the diagnosis is

borderline

or suspicious. There are also very good reproductive cancer support groups

(See

Carla Dionne's website: uterinefibroids.com)

An accurate diagnosis on cancerous cells is priority number 1.

Secondly, the findings of endometriosis on your uterus and ovaries.

Are you having debilitating symptoms like severe cramping? Do

you have pelvic pain, pain with intercourse? Do you have a history

of pelvic pain/cramping dating back to adolescence? Have you

researched endometriosis?

Thirdly, the uterine fibroids. Are they symptomatic--ie

feeling bulky, pressure, frequent urination, constipation? painful

intercourse,

heavy bleeding?

Get very sound and very accurate diagnosis on the cancerous

cells first, Cyndi. You have a very precious little family

depending on you. If that is ruled out, then move next to

the endo/fibroid issues.

Take good care. We're all cheering for you.

Marsha

In a message dated 3/13/01 10:49:11 PM Eastern Standard Time,

DannyCyndi@... writes:

> Hello Ladies ,

>

> I have been reading the post on uterine fibroids for a couple of weeks

> now ... I am a 33 year old with one child that i had six months ago .. I

had

>

> to have him c section because of complications which forced me to do so

> ..when they done the c section i was diagnosed with 2 fibroids ..1 3cm on

> fudus and a small 5 mm on the poterior surface and endo covering uterus

and

>

> overies ..i also had my tubes tied at this point my husband and i concider

> our son to be mircle concidering we have been married for 12 years and i

> have

> had a miscarriage summer of 99 which wasnt the best i wound up bleeding

for

> 4

> weeks and the doctor i was going to wouldnt do anything for me except pain

> pills then i hemmoraged and then she (yes she ) finally sent me to a gyn

...

> ok to make a already long story shorter .. i have had to many things to

even

>

> number wrong with my female organs and now with the symptoms from the endo

> and fibroids which birth control is not working i am at a brick wall with

> what to do .. i do absolutly trust my Gyn and i dont think that i need a

new

>

> doctor ..

> what my question is however is this my doctor has recommed a hysterectomy

...

>

> i also have had cancerous cells and my grand mother just had one due to

> cancer .... i do not plan on having any more childeren and my hormones are

> absolutly frightful i have even taken birth control and had hormone shots

...

>

> anyways i would like to know if there is anyone that has had both endo and

> fibroids and anyones input would be helpful as to what they done as of a

> week

> ago the fibroid on the fundus is now at 39cc i appreciate all input i will

> thank everyone ahead of time ..

> thank you all and i enjoy all posts

>

> cyndi

> Tulsa Oklahoma

> dannycyndi@...

>

[Guest guest]

Marsha

Thanks for the post ..

Yes i have a handle on the cancerous cells they were diagnosed and had a cone

biopsy and paps every 6 months until i was stable for a year ..

I have all the symptoms of fibroids and endo (Yuck) bloating ,painful

intercourse, contipation , diarrhea, painful periods ,lots of bleeding and

breaking thur in the middle of my cycle ,Back pain that is sometime

unbearable , and MOOD SWINGS !!!!!!! i am currently on an antidepressant and

birth control pill which like i said are ineffective and the fatige is awful

sometimes ..( i know other are dealing with the same issues)

i have had problems since i started my period ..

chronic PID , adhesions etc etc .

my only concern right now is what to do and am going back to my Gyn and

i need to have an answer for him as what to do .. My hormones are of one the

top concerns for me i need to get a grip on them and so far life is (pardon

the french ) a living hell at my house my poor hubby !!!!

Anyway i have read alot on endo and the fibriods and i do not mean to

offend anyone but it seems that all treatments have a risk envolved and to be

quiet honest i dont have a clue about any of them !! i mean how do you decide

and the other problem is i have no insurance and i really dont want to have

to go through anymore stuff i know it sounds as if i have already made up my

mind but i really havent.

anyway i am confused in oklahoma !!!!!!

Cyndi

dannycyndi@...

[Guest guest]

Marsha

Thanks for the post ..

Yes i have a handle on the cancerous cells they were diagnosed and had a cone

biopsy and paps every 6 months until i was stable for a year ..

I have all the symptoms of fibroids and endo (Yuck) bloating ,painful

intercourse, contipation , diarrhea, painful periods ,lots of bleeding and

breaking thur in the middle of my cycle ,Back pain that is sometime

unbearable , and MOOD SWINGS !!!!!!! i am currently on an antidepressant and

birth control pill which like i said are ineffective and the fatige is awful

sometimes ..( i know other are dealing with the same issues)

i have had problems since i started my period ..

chronic PID , adhesions etc etc .

my only concern right now is what to do and am going back to my Gyn and

i need to have an answer for him as what to do .. My hormones are of one the

top concerns for me i need to get a grip on them and so far life is (pardon

the french ) a living hell at my house my poor hubby !!!!

Anyway i have read alot on endo and the fibriods and i do not mean to

offend anyone but it seems that all treatments have a risk envolved and to be

quiet honest i dont have a clue about any of them !! i mean how do you decide

and the other problem is i have no insurance and i really dont want to have

to go through anymore stuff i know it sounds as if i have already made up my

mind but i really havent.

anyway i am confused in oklahoma !!!!!!

Cyndi

dannycyndi@...

[Guest guest]

Marsha

Thanks for the post ..

Yes i have a handle on the cancerous cells they were diagnosed and had a cone

biopsy and paps every 6 months until i was stable for a year ..

I have all the symptoms of fibroids and endo (Yuck) bloating ,painful

intercourse, contipation , diarrhea, painful periods ,lots of bleeding and

breaking thur in the middle of my cycle ,Back pain that is sometime

unbearable , and MOOD SWINGS !!!!!!! i am currently on an antidepressant and

birth control pill which like i said are ineffective and the fatige is awful

sometimes ..( i know other are dealing with the same issues)

i have had problems since i started my period ..

chronic PID , adhesions etc etc .

my only concern right now is what to do and am going back to my Gyn and

i need to have an answer for him as what to do .. My hormones are of one the

top concerns for me i need to get a grip on them and so far life is (pardon

the french ) a living hell at my house my poor hubby !!!!

Anyway i have read alot on endo and the fibriods and i do not mean to

offend anyone but it seems that all treatments have a risk envolved and to be

quiet honest i dont have a clue about any of them !! i mean how do you decide

and the other problem is i have no insurance and i really dont want to have

to go through anymore stuff i know it sounds as if i have already made up my

mind but i really havent.

anyway i am confused in oklahoma !!!!!!

Cyndi

dannycyndi@...

[Guest guest]

i messed up the paps were every 3 months for a year !!! sorry my little man

is making things hard this am lol

cyndi

[Guest guest]

i messed up the paps were every 3 months for a year !!! sorry my little man

is making things hard this am lol

cyndi

[Guest guest]

i messed up the paps were every 3 months for a year !!! sorry my little man

is making things hard this am lol

cyndi

[Guest guest]

Cyndi---

Wow. My hat goes off and my heart goes out to you.

Your stable on the irregular cells/had cone biopsy.

I can't imagine how your managing both symptomatic

endometriosis/uterine fibroids.

I was hoping, really hoping at least one

condition was asymptomatic! You hit the wrong lottery, kiddo!

Have you found any endometriosis related support groups

that have women suffering multiple conditions? I'm not sure,

but it is possible we have women on this list group.

I'm sure they'll comment if so...if anybody's out there, help!

Do you have extended family support to give you respite

from the demands of a 6 month old during the day---at least

an hour or 2 to give you a chance to lay down? Even post 45

I still vividly recall the demands of that first year. Do you

stop what your doing and just go down for a nap when your

little guy is? Are you able to take any extra supplements

for your immune system? Are you anemic? You sure

need to scarf down the good foods too to get the

energy you need...stuff with B vitamins, Iron, minerals--

make every mouthful count!

Your awfully young for a hysterectomy but I could

understand where your symptoms appear

insurmountable. Can you find out what

percentage you have, if you proceed with a hysterectomy,

of dealing with the endo in the pelvic lining, post-hysty?

If you elect alternatives, ie laparoscopic endometrial

procedure and alternative uterine fibroid procedures, ie

a UAE--since you have had a tubal ligation but have

no insurance, would there be family members willing

to help financially or a bank loan? I was home full-time

myself/on husband's single income---I know how tight it is.

Cyndi, with your symptoms I don't see how you could

work, actually....have you applied for medical disability--

it might be worth calling social services or discussing

with your ob-gyn.

I applaud you for checking into all of your options--

and yes it is confusing. Are your family members also

encouraging you to " just have it all out? " I'm

uncomfortable with your age, possible post-op

complications, long-term HRT----if your ovaries stop

producing (if they are left in) after 5 years or less and

you need HRT--will that exacerbate any endo remnants

or regrowth? Geez, what else did I forget?

Is your Gyne part of a specialty practice group that

deals with multiple problems---s/he better be paying

close attention to your needs, symptoms and better

be empathic---don't accept a smile, 19 seconds, and

a script....you are bringing up the next generation.

I hope others will respond.

Best wishes & we care. Hang in there and tell your

hubby we said you need all the support you can get. Him Too!

Marsha

In a message dated 3/14/01 10:01:38 AM Eastern Standard Time,

DannyCyndi@... writes:

> Marsha

> Thanks for the post ..

> Yes i have a handle on the cancerous cells they were diagnosed and had a

> cone

> biopsy and paps every 6 months until i was stable for a year ..

> I have all the symptoms of fibroids and endo (Yuck) bloating ,painful

> intercourse, contipation , diarrhea, painful periods ,lots of bleeding and

> breaking thur in the middle of my cycle ,Back pain that is sometime

> unbearable , and MOOD SWINGS !!!!!!! i am currently on an antidepressant

and

>

> birth control pill which like i said are ineffective and the fatige is

> awful

> sometimes ..( i know other are dealing with the same issues)

> i have had problems since i started my period ..

> chronic PID , adhesions etc etc .

> my only concern right now is what to do and am going back to my Gyn

and

>

> i need to have an answer for him as what to do .. My hormones are of one

the

>

> top concerns for me i need to get a grip on them and so far life is

(pardon

> the french ) a living hell at my house my poor hubby !!!!

> Anyway i have read alot on endo and the fibriods and i do not mean to

> offend anyone but it seems that all treatments have a risk envolved and to

> be

> quiet honest i dont have a clue about any of them !! i mean how do you

> decide

> and the other problem is i have no insurance and i really dont want to

have

> to go through anymore stuff i know it sounds as if i have already made up

my

>

> mind but i really havent.

> anyway i am confused in oklahoma !!!!!!

>

> Cyndi

> dannycyndi@...

>

[Guest guest]

Cyndi---

Wow. My hat goes off and my heart goes out to you.

Your stable on the irregular cells/had cone biopsy.

I can't imagine how your managing both symptomatic

endometriosis/uterine fibroids.

I was hoping, really hoping at least one

condition was asymptomatic! You hit the wrong lottery, kiddo!

Have you found any endometriosis related support groups

that have women suffering multiple conditions? I'm not sure,

but it is possible we have women on this list group.

I'm sure they'll comment if so...if anybody's out there, help!

Do you have extended family support to give you respite

from the demands of a 6 month old during the day---at least

an hour or 2 to give you a chance to lay down? Even post 45

I still vividly recall the demands of that first year. Do you

stop what your doing and just go down for a nap when your

little guy is? Are you able to take any extra supplements

for your immune system? Are you anemic? You sure

need to scarf down the good foods too to get the

energy you need...stuff with B vitamins, Iron, minerals--

make every mouthful count!

Your awfully young for a hysterectomy but I could

understand where your symptoms appear

insurmountable. Can you find out what

percentage you have, if you proceed with a hysterectomy,

of dealing with the endo in the pelvic lining, post-hysty?

If you elect alternatives, ie laparoscopic endometrial

procedure and alternative uterine fibroid procedures, ie

a UAE--since you have had a tubal ligation but have

no insurance, would there be family members willing

to help financially or a bank loan? I was home full-time

myself/on husband's single income---I know how tight it is.

Cyndi, with your symptoms I don't see how you could

work, actually....have you applied for medical disability--

it might be worth calling social services or discussing

with your ob-gyn.

I applaud you for checking into all of your options--

and yes it is confusing. Are your family members also

encouraging you to " just have it all out? " I'm

uncomfortable with your age, possible post-op

complications, long-term HRT----if your ovaries stop

producing (if they are left in) after 5 years or less and

you need HRT--will that exacerbate any endo remnants

or regrowth? Geez, what else did I forget?

Is your Gyne part of a specialty practice group that

deals with multiple problems---s/he better be paying

close attention to your needs, symptoms and better

be empathic---don't accept a smile, 19 seconds, and

a script....you are bringing up the next generation.

I hope others will respond.

Best wishes & we care. Hang in there and tell your

hubby we said you need all the support you can get. Him Too!

Marsha

In a message dated 3/14/01 10:01:38 AM Eastern Standard Time,

DannyCyndi@... writes:

> Marsha

> Thanks for the post ..

> Yes i have a handle on the cancerous cells they were diagnosed and had a

> cone

> biopsy and paps every 6 months until i was stable for a year ..

> I have all the symptoms of fibroids and endo (Yuck) bloating ,painful

> intercourse, contipation , diarrhea, painful periods ,lots of bleeding and

> breaking thur in the middle of my cycle ,Back pain that is sometime

> unbearable , and MOOD SWINGS !!!!!!! i am currently on an antidepressant

and

>

> birth control pill which like i said are ineffective and the fatige is

> awful

> sometimes ..( i know other are dealing with the same issues)

> i have had problems since i started my period ..

> chronic PID , adhesions etc etc .

> my only concern right now is what to do and am going back to my Gyn

and

>

> i need to have an answer for him as what to do .. My hormones are of one

the

>

> top concerns for me i need to get a grip on them and so far life is

(pardon

> the french ) a living hell at my house my poor hubby !!!!

> Anyway i have read alot on endo and the fibriods and i do not mean to

> offend anyone but it seems that all treatments have a risk envolved and to

> be

> quiet honest i dont have a clue about any of them !! i mean how do you

> decide

> and the other problem is i have no insurance and i really dont want to

have

> to go through anymore stuff i know it sounds as if i have already made up

my

>

> mind but i really havent.

> anyway i am confused in oklahoma !!!!!!

>

> Cyndi

> dannycyndi@...

>

[Guest guest]

Do you still have lots of pain, or heavy bleeding? If the fibroids

are controlling your life during your period (or inbetween) then you

may want to do something about them. Are you going to have more

children? There are lots of options but you have to find the right

one for you and your symptoms. I had any Uterine Artery Embolization

(UAE) done in Aug, it didn't help my symptoms, but has many women.

They don't advise doing it if you are going to have more kids. Now

I'm looking at endometrail ablation. Keep researching it, you'll

come up with the right answer. Debbie

- In uterinefibroids@y..., jmlobrn@a... wrote:

> I am new to any kind of chat group, message board, or anything of

the

> like. I'm just looking to find out as much as I can about

fibroids.

> I am 26. I was diagnosed at 19 after 3 years of excrutiating

pain.

> It took them that long because I was so young. And even then it

was

> only diagnosed after a laparoscopy and hysteroscopy that were done

> together. I have had ups and downs with my fibroids. Now after

the

> birth of my 2nd son,(I had four miscarriages, then my first son,

then

> 2 years of trying for my second with 1 year of infertility

treatment)

> my fibroids have grown very large. I'm afraid of the wait and see

> attitude but truthfully I'm afraid to do anything about it also.

Any

> thoughts would be appreciated.

[Guest guest]

In a message dated 3/25/01 11:45:34 PM Eastern Standard Time,

notify writes:

>

Hi and welcome to another new member. As has become our custom we always like

to welcome the new people, but as always it is hard because it is another

person with RSD. We, well, Felice, holds chat every Mon and Thurs evening

starting at 9pm (est) and most every morning starting at 9am (est) on AOL's

instant messenger.

It is a very informal chat so try to join us and get to know us. If you have

any questions please feel free to ask away! We are all here for you.

We have most of our stories in the file section of the main page of the list.

While at the main page check out the bookmark section. We have added so many

links about rsd there. If you would be kind enough to write a short story

about how you got RSD, what treatments you have used, etc., Jo will add it to

the files with all of the rest.

Hugs and a pain free minute,

DEB

Debgena@...

Deb, Jo & Felice

Listowners RSD-CRPS

PLEASE NOTE THE FOLLOWING WAIVER

No advise given by any member of this group is to be misconstrued as a

reason to start, stop or add anything to your treatment plan including

medications and procedures recommended by your physician.

We are not responsible for any advise given and used in anyway against your

doctors advise.

Please check with all the people treating your condition before attempting to

try anything new. Thanks.

Deb, Jo and Felice

listowners

RSD-CRPS

[Guest guest]

Hi Peggy, welcome!

It is okay that your English isn't that great, we understand pain. I understood you perfectly anyway.

It is great that you stay active with weelchair-badmitton. My name is Deb and I also have had rsd for 4 years.

I hope to get to meet you at one of our morning coffee chats, which would be evening for you, right?

Take care Peggy and welcome again

Hugs and a pain free minute,

Deb

Debgena@...

"Hope is a thing with feathers that perches in the soul "

Listowner rsd-crps

Deb Genatossio

Massachusetts Charter Director and

Planning Director for American Society for RSD/CRPS (ASRSD/CRPS)

PO Box 1397, Abingdon, MD  21009

Toll Free Hotline:  1-866-OUR-PAIN

Main Office: (office hours: Mon, Wed, Fri 10 AM to 3PM)

online membership: ASRSD_CRPS

http://www.americansocietyforrsd-crps.org

http://americansocietyforrsd-crps.org/societypages/handbook.html

[Guest guest]

Hi Deb

You asked me for the coffee chat that you have on Wednesday from 10 -

11 ours. Hmm, then it is here 16.00 ours if I have alright (4 pm). I

will look of I am at home at that time, I have now a job and I go to

school so I have these weeks not so many time. In October then I am

ready whit school and then I have more time. I've you want to now

something from me asked me and I'll be happy to give you an answer.

Greet en hugs

Peggy

> Hi Peggy, welcome!

> It is okay that your English isn't that great, we understand pain.

I

> understood you perfectly anyway.

> It is great that you stay active with weelchair-badmitton. My name

is Deb and

> I also have had rsd for 4 years.

> I hope to get to meet you at one of our morning coffee chats, which

would be

> evening for you, right?

> Take care Peggy and welcome again

> Hugs and a pain free minute,

> Deb

> Debgena@a...

>

> " Hope is a thing with feathers that perches in the soul "

> Listowner rsd-crps@y...

>

>

>

> Deb Genatossio

> Massachusetts Charter Director and

> Planning Director for American Society for RSD/CRPS (ASRSD/CRPS)

> PO Box 1397, Abingdon, MD  21009

> Toll Free Hotline:  1-866-OUR-PAIN

> Main Office: (office hours: Mon, Wed, Fri 10 AM to 3PM)

> online membership: ASRSD_CRPS@y...

> http://www.americansocietyforrsd-crps.org

> http://americansocietyforrsd-crps.org/societypages/handbook.html

[Guest guest]

please take me off your e-mail list. thank you. Re: new member Hi DebYou asked me for the coffee chat that you have on Wednesday from 10 - 11 ours. Hmm, then it is here 16.00 ours if I have alright (4 pm). I will look of I am at home at that time, I have now a job and I go to school so I have these weeks not so many time. In October then I am ready whit school and then I have more time. I've you want to now something from me asked me and I'll be happy to give you an answer.Greet en hugs Peggy> Hi Peggy, welcome!> It is okay that your English isn't that great, we understand pain. I > understood you perfectly anyway.> It is great that you stay active with weelchair-badmitton. My name is Deb and > I also have had rsd for 4 years.> I hope to get to meet you at one of our morning coffee chats, which would be > evening for you, right?> Take care Peggy and welcome again> Hugs and a pain free minute,> Deb> Debgena@a...> > "Hope is a thing with feathers that perches in the soul "> Listowner rsd-crps@y... > > > > Deb Genatossio > Massachusetts Charter Director and> Planning Director for American Society for RSD/CRPS (ASRSD/CRPS)> PO Box 1397, Abingdon, MD 21009> Toll Free Hotline: 1-866-OUR-PAIN> Main Office: (office hours: Mon, Wed, Fri 10 AM to 3PM)> online membership: ASRSD_CRPS@y...> http://www.americansocietyforrsd-crps.org> http://americansocietyforrsd-crps.org/societypages/handbook.html

[Guest guest]

Hi Guys,

Please help me in welcoming our newest member .

Welcome ,

I am sure you will find it very comfortable here. Everyone is so caring, so

you will find much support here also. I wish you didn't have to be here, but

I do look forward to hearing from you.

Take care.

Hugs and a pain free minute,

Deb

Debgena@...

____________________________________________________________________

PLEASE NOTE THE FOLLOWING WAIVER

No advise given by any member of this group is to be misconstrued as a reason

to start, stop or add anything to your treatment plan including medications

and procedures recommended by your physician.

We are not responsible for any advise given and used in anyway against your

doctors advise.

Please check with all the people treating your condition before attempting to

try anything new. Thanks.

Deb, Jo and Felice

listowners

RSD-CRPS

[Guest guest]

Hi Guys,

Please help me in welcoming our newest member .

Welcome ,

I am sure you will find it very comfortable here. Everyone is so caring, so

you will find much support here also. I wish you didn't have to be here, but

I do look forward to hearing from you.

Take care.

Hugs and a pain free minute,

Deb

Debgena@...

____________________________________________________________________

PLEASE NOTE THE FOLLOWING WAIVER

No advise given by any member of this group is to be misconstrued as a reason

to start, stop or add anything to your treatment plan including medications

and procedures recommended by your physician.

We are not responsible for any advise given and used in anyway against your

doctors advise.

Please check with all the people treating your condition before attempting to

try anything new. Thanks.

Deb, Jo and Felice

listowners

RSD-CRPS

[Guest guest]

Welcome to our little family. You will find a lot of support

here. We know what you are going through and everything. Feel free

to ask questions or post your thoughts. I'm here several times a

day:)

Hugs, Theresa S.

[Guest guest]

Welcome to our little family. You will find a lot of support

here. We know what you are going through and everything. Feel free

to ask questions or post your thoughts. I'm here several times a

day:)

Hugs, Theresa S.