Re: Advice Please (Long)
From: Marcia (anonymous@obgyn.net)
Tue Mar 27 10:31:34 2001
Hi Jennifer:
I feel for you and feel your frustration, not to mention MAD. First of
all, I would see if your OBYGN has talked directly to your PCP, who
would not refer you to the general surgeon your gyn recommended. If he
has, and your PCP still refused, you could write to your managed care
director, or even a patient advocate office, which should be available
to you and let them know (probably in writing) of what is going on,
especially since the old-timer GS sent for that barium, it didn't come
out for 3 days, you're still in pain, and all of that.
I know this sound hard at the moment, especially since you are so sick
right now...think about how you want to proceed as well...it's your
body, you know how it feels, what do you want to do? A hyst is forever,
and you're only 27 (do you have any kids yet, is that an option in the
future?).
Personally, to me, I would opt for another opinion. My PCP won't allow
me to go to the endo specialist I want to, but that may be an option you
would want to explore...do you want me to send you Belle's drs. list
off the forum, for more info to help?
To me, listening to your symptoms, (and I have the problem the other
way, diarrhea central usually), especially with so much bowel
involvement, and your obgyn saying you NEED the laparatomy with a good
general surgeon...I think that is the route I would try to take...to do
as much as you can to get your PCP to get the right GS. (You could also
threaten to write to your state health board, or something similar that
your PCP belongs to, because you are getting the run-around and not
getting the "quality of care" and "quality of treatment" needed your
very individual case. It also could be that your PCP is not
knowledgeable enough to know what is best for you, but it sounds like
your obgyn does....
These are my suggestions, I hope they help just a little...I am so sorry
you are in such pain. I will say prayers for you to help you decide
what to do.
--
Marcia
At Tue, 27 Mar 2001, Jennifer wrote:
>
>Hello. I have been a member of this board for quite a while, although I do
>not post much. I have written about my past before, but I will jog
>everyone's memory.
>
>I am a 27 year old with severe endo. Back in 1998 I had my first lap in
>which they did not do much but close me back up. 5 days later I ended up in
>the emergency room with internal bleeding. They did a full laporatomy and
>found a cyst had burst on an artery. While in there, they said that I had
>some bowel damage that would have to be repaired at some point. After a
>long recovery, I did not go back until Dec of 1999. Another lap was
>performed and a tennis ball sized cyst was removed.
>
>I found a new doctor in Tampa, Fl and he immediately did another lap. He
>removed lots of endo. My bowel was wrapped around my fallopian tube and
>stuck to my abdominal wall. He stated that it was stage 4. (this is Oct.
>of 2000). After my surgery, he started me on lupron. After 4 months I was
>still in pain. He opened me up again last month. He removed more endo and
>unwound my bowel from my fallopian tube and ovary again. This part was
>cemented to my pelvic cavity. He also sent me to a General Surgeon. My
>bowels were so cemented to my abdominal cavity that he could not budge them.
>They do cause constant problems. I have constant pain. I do not go to the
>bathroom for at least 4 days at time. When I do go, it is terribly painful
>and very loose. When I am not going, I get sharp pains in my rectum.
>
>My PCP would not send me to the GS my OBGYN suggested. He sent me to
>another one....definitely and old timer. He sent me for an Upper GI work
>up. I drank the barium and had the x-rays. When I went back to see him, he
>said I need to see a GI doctor. In the meantime, it took 3 days for the
>barium to come out, it came out terribly over the next 3 days, including
>blood in the stool and severe pain. Since yesterday, I cannot keep anything
>down I eat. I vomit it all back up.
>
>I am at a loss here. My OBGYN stated that I definitely need to have a
>General Surgeon remove it w/ a laporatomy as it is too glued to remove with
>a scope. He said the only other thing he can do for me now is a
>hysterectomy.
>
>I am so upset. I don't know where to turn anymore. I feel as if I have hit
>a brick wall. I am in constant pain. I constantly have bathroom problems
>in addition to my cramping and pain. Now I cannot even eat. I am in fear
>of losing my job...I cannot seem to make it through a full day. Now I
>cannot even take my pain pills because I am throwing them up.
>
>Does anyone have any suggestions? Do I try and find another General
>Surgeon, or look for an endo specialist in my area?
>
>Help Please....and advice is appreciated.
>
>Jennifer
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)