ENDO Messages for December, 2005: Re: Stage IV and too young for a Hysterectomy

Re: Stage IV and too young for a Hysterectomy

From: anonymous (anonymous@obgyn.net)
Thu Dec 8 01:13:32 2005

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i'm very sorry to say this, but it doesn't sound at all to me that you have "good" doctors. two 6-month courses of lupron is supposed to be the maximum one can take safely *in their entire lifetime*. i have never heard of anyone being on lupron indefinitely! and if you are in pain every day, it doesn't even sound like it is working? birth control pills can stop your period without putting you into chemical menopause, but neither lupron nor bcps will help pain caused by adhesions, and neither are guaranteed work to relieve pain caused directly by endo.

have you had a bone density scan? if not, ask for one now - lupron can cause irreversible bone loss.

start reading and learning as much about endo as you can. online lists like this one are a great start, there are many women here who will support you and share their knowledge and experiences. there may also be support groups in your area where you could find other women with endo - either way, you are not alone!

there are doctors who can help you, what you need is a real endo specialist. here are the websites of some of the most respected doctors in this field:

http://www.pelvicpain.com/

http://www.endometriosistreatment.org/

http://www.centerforendo.com/

also, if you aren't already in one, try to get into a pain management program. you are no less a woman or person for having this disease, and unfortunately it does sound as though you are being worn down by the pain. that is completely normal - chronic pain can cause physiological changes like the depletion of serotonin which leads to depression.

it's terrible that you are suffering so much, especially at such an young age. you are right, it isn't fair - but there is hope! one good thing has already happened - you are reaching out and educating yourself.

i hope some of this helps!

At Wed, 7 Dec 2005, Amanda wrote: >
>I just turned 21 and when they diagnosed me at 18 it was already way too
>out of control to do anything about. I am in pain everyday of my life
>which I know is not unusual with a case as bad as mine, but my problem
>is that I haven't got a period in over 3 years and I don't really feel
>like a girl anymore anyway. I have been on Lupron for the last year and
>a half and they don't ever plan on taking me off. It seems like this
>disease is taking over my life and there is nothing that I can do to
>stop it. I know that I have good doctors, and that they know what they
>are talking about, but how do you get past the feeling that you are in
>some ways not as good as everyone else and the longing to just remember
>what it's like to be normal. To me normal is a doctor appointment or
>physical therapy at the very least every other week. I know it's pretty
>bad when I start to even miss my period. I just think I'm way to young
>to be in menopause and this just isn't fair. Something good needs to
>happen. They have to be working on something that may help people like
>me.

Next message: em: "rectal pain!"
Previous message: Sudsey: "Re: Adnexal Cyst - Pls. need Info."
In reply to: Amanda: "Stage IV and too young for a Hysterectomy"
Next in thread: Amanda: "Re: Stage IV and too young for a Hysterectomy"

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