Endo Anyone?

[Guest guest]

Hi Alissa,

No I don't have endo, but have you checked out any book stores for info? I

know after my ep I went to Border's Books to see if they had any books

specifically about eps which they didn't and I saw a few books on women's

health care and I know one was about endometriosis. So maybe? you could try

that. I am really sorry that with trying to find support you found more

heartache with the endo boards. Sometimes those women aren't very nice on

other boards and they are or as it appears to me in little cliques. Well at

least with us here we are nice and all care about each other. After my

ep(which was in July '99)I went to a pg loss forum looking for support which

had people who had loses due to m/c and when I mentioned my loss and it was

due to an ep well someone on there " kindly " told me that my loss wasn't a

loss like theirs was because mine was different because it was a case of the

egg being fertilized in the wrong spot but in my eyes a loss is a loss, but

even though some were nice I never went back and as I read the response that

that women wrote back to me I called her such a string of profanities that I

made my cats blush . So don't feel bad that you " strayed " because you

didn't " stray " you just wanted some comfort and some information and your

entitled to it. I might not be able to help you much in the endo department,

but I am here for you anyways Please take care.

Love,

Sheila

[Guest guest]

I was just wondering if anyone else her is dealing with

endometriosis. After having such a great experience with this group,

I joined 2 endo support groups. I posted my story to each along with

a couple questions. In one of the groups NO ONE responded. I was

surprised because each time a new person posts here almost everyone

has kind words for them. I got 3 responses from the other group.

Two people were very nice and positive while the third asked if my

dr. removed my endo because it will " spread like cancer. " That was

not exactly want I wanted to hear. As a matter of fact, even though

there's no proof that endo does that, it scared me. I don't like the

endo groups because they depress me way too much. Everyone is in

extreme pain that no medication can alleviate. They've tried all

kinds of treatments that have horrible side effects. Lots of them

have husbands that leave them because the pain and medication whack

them out and leave them bedridden for months at a time, or make them

too moody to tolerate. They talk about never wanting children for

fear of spreading this horrible disease to a daughter.

So after cheating on you all with other support groups, I'm coming

back here and vowing never to stray again. I feel bad for them, but

after reading through their messages I get sharp, stabbing pains of

my own. I am too much of a sponge, when I read about their pain I

feel pain of my own. So, I decided that I would see if anyone else

here deals with endo and I could just ask them questions, if I have

any. I just feel more comfortable here and I get so much more

positive support. I come away thinking, " Yes, I will get pregnant

and my life will be just fine, " rather than, " I will live my life in

horrible pain, pain which I should not pass on to future

generations. " (I am way to easily influenced, as you can see.)

I guess it just proves what many of you already know, this is the

bestest group ever!

Alissa

[Guest guest]

What a horrible attitude these endo groups are fostering?!?!?! I mean, we

all need some self-pity every now and then but to wallow in it is unhealthy.

When I had my hsg, my RE said I had a spot of endo and I mean a spot like

this: o

Down near my bladder which he removed. I am SO lucky. But as far as I know

there is no proof that endo is a genetically inherited disease, and doesn't

mean that you would pass it on to any daughters you might have.

My neice had endo, and she is one of 4 girls, her mother one of 5 girls, all

of whom have had around 6 children each and is the ONLY one in all

those related women with endo.

Hers actually was helped by diet and naturopathic medicine.

It doesn't need to be a life sentence, although for *some* women, there

aren't any answers, but for the majority, something can be done to either

cure, or stabilise it.

Have you had any surgery to find the extent of your endo? Many women whose

endo isn't extensive can have it removed laparoscopically.

Just some food for thought, don't let those sad sacks scare you...

~Maree

shara @ cutey.com

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Endo Anyone?

I was just wondering if anyone else her is dealing with

endometriosis. After having such a great experience with this group,

I joined 2 endo support groups. I posted my story to each along with

a couple questions. In one of the groups NO ONE responded. I was

surprised because each time a new person posts here almost everyone

has kind words for them. I got 3 responses from the other group.

Two people were very nice and positive while the third asked if my

dr. removed my endo because it will " spread like cancer. " That was

not exactly want I wanted to hear. As a matter of fact, even though

there's no proof that endo does that, it scared me. I don't like the

endo groups because they depress me way too much. Everyone is in

extreme pain that no medication can alleviate. They've tried all

kinds of treatments that have horrible side effects. Lots of them

have husbands that leave them because the pain and medication whack

them out and leave them bedridden for months at a time, or make them

too moody to tolerate. They talk about never wanting children for

fear of spreading this horrible disease to a daughter.

So after cheating on you all with other support groups, I'm coming

back here and vowing never to stray again. I feel bad for them, but

after reading through their messages I get sharp, stabbing pains of

my own. I am too much of a sponge, when I read about their pain I

feel pain of my own. So, I decided that I would see if anyone else

here deals with endo and I could just ask them questions, if I have

any. I just feel more comfortable here and I get so much more

positive support. I come away thinking, " Yes, I will get pregnant

and my life will be just fine, " rather than, " I will live my life in

horrible pain, pain which I should not pass on to future

generations. " (I am way to easily influenced, as you can see.)

I guess it just proves what many of you already know, this is the

bestest group ever!

Alissa

[Guest guest]

Alissa,

I have no info on endo but glad you are back and I think your attitude is

great.. because you WILL get pg and everything else will work itself out...

lisa r

[Guest guest]

Alissa, I wish I had some info on endo for you, I am sorry. I am very sorry to

hear you didn't get any help or comfort from those support groups. That is

really sad to think about. This is the best group!!!

alissamcd@... wrote: I was just wondering if anyone else her is

dealing with

endometriosis. After having such a great experience with this group,

I joined 2 endo support groups. I posted my story to each along with

a couple questions. In one of the groups NO ONE responded. I was

surprised because each time a new person posts here almost everyone

has kind words for them. I got 3 responses from the other group.

Two people were very nice and positive while the third asked if my

dr. removed my endo because it will " spread like cancer. " That was

not exactly want I wanted to hear. As a matter of fact, even though

there's no proof that endo does that, it scared me. I don't like the

endo groups because they depress me way too much. Everyone is in

extreme pain that no medication can alleviate. They've tried all

kinds of treatments that have horrible side effects. Lots of them

have husbands that leave them because the pain and medication whack

them out and leave them bedridden for months at a time, or make them

too moody to tolerate. They talk about never wanting children for

fear of spreading this horrible disease to a daughter.

So after cheating on you all with other support groups, I'm coming

back here and vowing never to stray again. I feel bad for them, but

after reading through their messages I get sharp, stabbing pains of

my own. I am too much of a sponge, when I read about their pain I

feel pain of my own. So, I decided that I would see if anyone else

here deals with endo and I could just ask them questions, if I have

any. I just feel more comfortable here and I get so much more

positive support. I come away thinking, " Yes, I will get pregnant

and my life will be just fine, " rather than, " I will live my life in

horrible pain, pain which I should not pass on to future

generations. " (I am way to easily influenced, as you can see.)

I guess it just proves what many of you already know, this is the

bestest group ever!

Alissa

[Guest guest]

Alissa

my aunt and one of my best friends both have endo. my best friend suffers

from it very badly. she has to have it burnt off every few months or so.

but she lives a very happy and productive life. she is in pain sometimes,

but it doesnt stop her. they told her she would probably never have a baby

because of it. and they tried for years and then last year she got pg and

now has a beautiful little 4 month old son.

if you have any questions, please ask me and i will ask her or my aunt

(although my aunt didnt' want any kids so she had a hysterectomy, she

probably couldnt answer most of yoour questions. but if you have any

questions whatso ever just ask and i will ask her for you and you will

definately get an answer, she is also a paramedic, so she knows all about it.

good luck

love

Crystal

[Guest guest]

Alissa,

Just last night on the late news there was a story about 3 sisters who all

had severe endo, and all 3 had successfully used IVF. It followed with a

request from Australian scientists for anyone with endo, PARTICULARLY anyone

with a sister who also had endo, to call and volunteer to help with their

research.

I found it interesting given that we were just talking about it all

yesterday. It seems like they are looking for the genetic link to endo, and

that's why they wanted sisters to participate.

Kind Regards,

~Maree

shara @ cutey.com

*****

Email addresses in this document have a space before and after the @ symbol.

This is to prevent viruses from reaching the writer and others.

If you want to correspond, just remove the spaces.

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Re: Endo Anyone?

Alissa, I wish I had some info on endo for you, I am sorry. I am very sorry

to hear you didn't get any help or comfort from those support groups. That

is really sad to think about. This is the best group!!!

alissamcd@... wrote: I was just wondering if anyone else her

is dealing with

endometriosis. After having such a great experience with this group,

I joined 2 endo support groups. I posted my story to each along with

a couple questions. In one of the groups NO ONE responded. I was

surprised because each time a new person posts here almost everyone

has kind words for them. I got 3 responses from the other group.

Two people were very nice and positive while the third asked if my

dr. removed my endo because it will " spread like cancer. " That was

not exactly want I wanted to hear. As a matter of fact, even though

there's no proof that endo does that, it scared me. I don't like the

endo groups because they depress me way too much. Everyone is in

extreme pain that no medication can alleviate. They've tried all

kinds of treatments that have horrible side effects. Lots of them

have husbands that leave them because the pain and medication whack

them out and leave them bedridden for months at a time, or make them

too moody to tolerate. They talk about never wanting children for

fear of spreading this horrible disease to a daughter.

So after cheating on you all with other support groups, I'm coming

back here and vowing never to stray again. I feel bad for them, but

after reading through their messages I get sharp, stabbing pains of

my own. I am too much of a sponge, when I read about their pain I

feel pain of my own. So, I decided that I would see if anyone else

here deals with endo and I could just ask them questions, if I have

any. I just feel more comfortable here and I get so much more

positive support. I come away thinking, " Yes, I will get pregnant

and my life will be just fine, " rather than, " I will live my life in

horrible pain, pain which I should not pass on to future

generations. " (I am way to easily influenced, as you can see.)

I guess it just proves what many of you already know, this is the

bestest group ever!

Alissa

[Guest guest]

~Maree,

Yeah, from what I've read there is supposed to be some genetic link,

but they're not sure how strong it is. I just want to tell my

sisters (and everyone else) to " have as many babies as you can before

it's too late! " Okay, so that's probably not the best answer for

some.

If those dr.'s would consider me, I bet one of my sister has endo

that could join. That's with the contingency that we get a free trip

to Australia. Some good may come of this yet! It seems as though

the knowledge of endo is a relatively new phenomena and that much

more research needs to be done before there are any solid answers.

Until then it's just a game of " let's try this on you and hope it

works. " But I have some ideas of my own of what I want to try and

they don't include massive doses of hormones that make me moody and

grow facial hair.

And if no one here is dealing with endo, that's just fine. I've been

outlining my plan based on what I've read elsewhere. It includes

exercise (in case it's my immune system's fault), diet change (in

case it's too much estrogen) and possibly using natural hormones

(once again, to counteract the estrogen). So we'll see if that

works. Even if it doesn't, I will be healthier. And that's always a

good plan in ttc and avoid debilitating pain.

Alissa

[Guest guest]

Alissa,

That's a good plan. I don't know if the drs would extend to a free trip for

you & your sister, I'm sure they will get a good response to their request.

It is a phone number people had to ring, but if you wanted to contact them

and ask them if they want you to be involved (maybe via email/fax or

something) I can find out for you, no problem.

The excercise is a VERY good plan. I read an article about a women with

very bad endo who at 21 was told she would NEVER have children. She had

only just gotten engaged or married and accepted that decision and tried to

move on with her life. She joined a belly-dancing class, and within 2

years, the rythyms of the belly movements had helped clear her endo to such

an extent that she was able to have a baby. That little daughter is now 3,

and she also does bellydancing with her mother and they enter competitions

together! The mother has been dancing for 5 years and no longer has ANY

pain with her endo.

It worked for her - why don't you give it a try? If it doesn't work, at

least you can dance for dh!

( ( ( (

) ) ) ) <- supposed to be bellydancing hugs

~Maree

shara @ cutey.com

*****

Email addresses in this document have a space before and after the @ symbol.

This is to prevent viruses from reaching the writer and others.

If you want to correspond, just remove the spaces.

*****

Re: Endo Anyone?

~Maree,

Yeah, from what I've read there is supposed to be some genetic link,

but they're not sure how strong it is. I just want to tell my

sisters (and everyone else) to " have as many babies as you can before

it's too late! " Okay, so that's probably not the best answer for

some.

If those dr.'s would consider me, I bet one of my sister has endo

that could join. That's with the contingency that we get a free trip

to Australia. Some good may come of this yet! It seems as though

the knowledge of endo is a relatively new phenomena and that much

more research needs to be done before there are any solid answers.

Until then it's just a game of " let's try this on you and hope it

works. " But I have some ideas of my own of what I want to try and

they don't include massive doses of hormones that make me moody and

grow facial hair.

And if no one here is dealing with endo, that's just fine. I've been

outlining my plan based on what I've read elsewhere. It includes

exercise (in case it's my immune system's fault), diet change (in

case it's too much estrogen) and possibly using natural hormones

(once again, to counteract the estrogen). So we'll see if that

works. Even if it doesn't, I will be healthier. And that's always a

good plan in ttc and avoid debilitating pain.

Alissa

[Guest guest]

Alissa and ~Maree

It took me almost years to get pg the first time and later when i looked

back upon it right before I got pg I had started yoga. I also started yoga

again right before my second pg... coincidence... I don't think so.

I have been yoga regualarly now for several months and I hope it helps with

ttc. THere are even certain moves to do for fertility, cysts etc. I could

check about moves for endo.

Right now I am reading a book called Luna Yoga.. about sexuality and

fertility and all... so far it's good. The woman who wrote it had cervical

cancer and supposedly cured herself through luna yoga and fertility

dancing....

hey, I figure it's worth a shot!!

lisa r

[Guest guest]

Alissa,

It sounds like you've come up with a great plan to start with! I don't know

very much about endo, but I do know that some women have been very

successful treating it naturally. I'm sorry those endo support groups were

so awful...it seems like that would be a great place to share natural

remedies...but I guess they weren't willing to see past their self-pity, to

even try that. Even though, it doesn't seem like we know too much about

endo, we will still support you through making the healthy lifestyle

change...and we want updates!

-AmyR

[Guest guest]

Alissa,

Well, I >might< be dealing with endo. In fact it's a question I have

down to ask my OB when I get my next (and I hope my last for the ep)

HCG test. I still have pain on my ovary (or thereabouts, anyway) even

though my HCG level is under 12. And the pain started up again when I

was under 100. Also last spring I had a few incidents of a few

seconds of sharp little stabbing pain in the same place: once at the

beginning of my period and twice with orgasm (what a drag!). Then I

didn't have the pain again. My family doctor, after talking about a

number of other things said it might be just a touch of endo.

So, yet another in my endless sea of questions. With a possible endo,

maybe I should have laparoscopy instead of HSG?

-

> I was just wondering if anyone else her is dealing with

> endometriosis.