Re: Is there any help out there?

From: Susan (susan.kuszczak@att.net)
Mon Mar 23 13:13:42 2009

I completely understand. I started with ovarian cysts in 1987, then adenomyosis, more cysts and endometriosis all resulting in complete hysterectomy. I have just scheduled my 15th surgery in 22 years. I have been diagnosed with Severe Pelvic Adhesion Disorder. The adhesion barriers have helped but not completely. Have also suffered complications as a result of surgeries reguiring additional surgeries (internal bleeding 2x, blood clots, NG tube resulting in barium aspiration requiring 1 week in ICU on a ventilator and spent 32 days in the hospital, bowel obstructions, etc, etc). They have done endoscopies, colonoscopies, etc trying to find something else, which they never do. That all seemed like a huge waste of time and money to me, especially since I kept telling the doctors it was adhesions. Seems like some physicians simply do not believe in it. It all seems like a never ending nightmare. Additionally, have been, once again, laid off from my 3rd job in 4 years. It is really difficult to be job hunting, in good faith, knowing there is yet another surgery just around the corner. Not to mention medical bills, first I have insurance, then I do not. And for "us", we all need to have insurance to battle this situation.

I will admit that working out reguarly really does seem to help, combined with a healthy diet. I am a smoker and a social drinker so I am NOT some "health guru" but it does seem to help manage the pain. And a good support system is important....my husband, especially, is THE BEST. We met 10 days before my hysterectomy...he stood by me then and has nursed me thru 8 surgeries since, ICU, etc etc, and is once again facing yet another surgery. All of which does put a "crimp" in our sex life, as I am sure you all know. I think I might have "run" if I were him (lol).

I truly feel for all of you and know you are not alone in your struggle.

At Sun, 23 Oct 2005, International Adhesions Society wrote: >
>From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of
>MITZ
>Sent: Sunday, October 23, 2005 3:57 PM
>Subject: Re: Is there any help out there?
>
>Annmarie,
> Your story sounds like mine in Nov.2005 i will have
>my 8th adhesion opperation.
>
>I got mine from a c-section too. i have no insides
>either but still in pain.
>
>you would think with all the tech out there they
>would be able to do something for adhesions. Iv'e
>been at it now for 4 years and its been hell i would not
>wish these things on anyone i had people say its in
>your head, until til they feel the pain they should
>stop have you had people say that to you?
>each opperation takes about 2in a half to 3 hours for
>me. its so unreal and the seprafilm DOES NOT WORK!!!!
>atleast it didnt for me. Please write be back
>In case you found out more info on adhesions.
>
>thank you
>Mitz
>dm527@netscape.com

Enter keywords:
Returns per screen: Require all keywords: