Endometriosis

mims107 Posted: Feb 25, 2003 02:57 PM

Endometriosis

I am reposting this from the parenting board, hoping to get some advice or something....

It is possible that I *might* have this disease (endometriosis), but I do not know for sure yet.

Can anyone share any experience they have with this or that someone you know has had?

One of my aunts had such a severe case that she could not conceive and had a hystorectomy (sp?). Another of my aunts had 3 healthy children and only in her later years has the disease bothered her. My other two aunts do not have it. I have been told that if found early it is fairly simple to treat (not cure) and that conceiving could be 'normal' but I am very very worried.

FH and I had hoped on conceiving right away!

Any thoughts????

P.S. I have some, but not ALL of the common symptoms, but one of my aunts was not diagnosed till she was 40 and it was too late!

Betty Posted: Feb 25, 2003 03:03 PM

Re: Endometriosis

My sister has this and has had a few surgeries for it. I don't know too much about it. What do you need to know? I'll try to answer and if not, I'll try to FIND the answers from her for you. FM me if you'd like

jennbaby Posted: Feb 25, 2003 03:06 PM

Re: Endometriosis

I had this and had surgery for it years ago. I am ok now. Any questions FM me

Good Luck if you are TTC!

Mary Posted: Feb 25, 2003 03:09 PM

Re: Endometriosis

There was an indepth article about endometriosis and available treatments in either December or January's Self Magazine. I'll check to see if I still have it at home.

Sassy Posted: Feb 25, 2003 03:12 PM

Re: Endometriosis

Mims - a good friend of mine has this. Def. treatable. Certain BC pills can keep it under control. But she had surgery b/c she had a severe case.

I know an excellent doctor. FM me if you want details.

Liz

mims107 Posted: Feb 25, 2003 03:14 PM

Re: Endometriosis

Betty and Jennbaby I FM you.

lizlen-thanks.. my aunt recommended my doctor, she is a RN, so hopefully he will be good, but I will get back to you for that doc if I feel like a second opinion!

Mary, thanks! I will look for back issues at the Library!

Thrilled Posted: Feb 25, 2003 03:15 PM

Re: Endometriosis

Hi Mims - I'm sorry to hear that this may become an issue for you.
As Jennbaby said - many, many women go on to lead healthy reproductive lives after being diagnosed with this. But it IS a serious disease.

Onr of my closest girlfriends had this - had repeated surgeries for it - and had trouble conceiving afterwards (her older sister had it too and lost all fertility as a result - no kids). She and her hubby went 3 rounds with various fertility treatments and finally got pregnant last summer. Sadly, my friend had to deliver a stillborn girl (6 months gestation) right before Christmas. Endometriosis struck again.

My mother, too had it, and had a total hysterectomy as a result. I'm sorry to be such a downer, but I think it's important you know what you're dealing with up front.
I will look for websites for you for information.

Edited to add: http://www.endometriosisassn.org/

Start with these guys and then follow links...good luck and best health to you!

mims107 Posted: Feb 25, 2003 03:20 PM

Re: Endometriosis

Thanks Rachel. dont worry about being a downer! I asked for honest feedback! I can't really get too nervous yet because I do not know for sure if this is what i have, nor do I know how serious it is my case is. But I want to make sure I take the correct actions to treat it.

Sorry for being selfish.. edited to add I am really sorry to hear about your friends loss

Julybaby Posted: Feb 25, 2003 06:50 PM

Re: Endometriosis

My mother had it for a while, but by the time she got it, she had all the kids she wanted. I remember she had terrible, terrible periods where she had to bring a change of clothes to work because she knew she was going to have an accident. About 6 months before her hysterectomy, it got so bad that she could not work when she had her period (she is a nurse administrator in a development center). Finally she had to have an emergency hysterectomy because her gyn was afraid she was going to bleed to death. I don't remember my mother taking any type of medication before her hysterectomy. I would definitely do some research on ivillage.com (I think that's the name of the website) and talk with your doctor so you know what you may be in for. Good luck.