Re: Endo return or Adhesions
From: debsiwministry@carolina.rr.com ("debsiwministry@carolina.rr.com")
Wed May 8 03:11:29 2002
Hi:
I had a doctor at Presbyterian(I can't think of his name but will look it
up) who was a gyn onocologist who specializes in adhesive apin and surgery.
He treated me with oxycontin and sent me to a pain clinic.He was against
doing my surgery and sent me to Steegie. A typical adhesive laser laparscopy
takes about 10 hours with the severity of my adhesions(like cement). He was
the first that got me out of pain so that I could at least function to take
care of my little one. I don't reccommend Steegie for many reasons. But this
guy at least got the ball rolling to give me long term pain relief. He also
was the one who realized I had autoimmune disease(MPS and RDS also) as a
result of the massive pelvic adhesions which are cutting off lymph and blood
flow to my legs. I no longer go to him as there wasn't much he could do for
me and he had hopes that Steegie could. I have gained weight since I have
endured all of this and one of the things Steegie wanted???? was for me to
loose 50 lbs. I now am getting pain relief and have only a rare ovarian cyst
and rupture so life has improved. My worst problems are the blood flow being
cut off to my legs especially during sleep or long periods of sitting. I
also have massive nerve entrapment in the abdominal wall and insicions.
Please note that many times adhesions start from a ruptured ovarian cyst..
the bleeding irritates the tissues causing adhesion formation. My very first
surgery at 17 ???showed massive adhesions and it was from month after month
of ruptured cysts. It was a emergency surgery(I was in ICU for one week...I
almost bled to death as the OBGYN I had ignored my pain and diagnosed it as
menstrual pains even while my BP was in shock range and I wasn't having my
period). Now 24 years later, 45 laparotomies, God only knows how many
laparscopies, I have at least some pain relief but am scared to death about
the blood supply being cut off to my legs from the massive adhesions. That
started after Dr. Steegie did a insicion ressection trying to ressect
trapped nerves. I ended up getting insicional dessehence and became severely
ill. I had to have nursing for months to do IV antibiotics and packing of
the insicion. Dr.Steegie dumped me off to my local OBGYN in Charlotte. In
fact I never even seen him for a followup. His postop plan was for me to
loose 50 pounds and then he would do a laparscopy. I recieved paperwork a
month later in the mail telling of my participation in a research program of
his...thanking me. It had attached a slew of paperwork to followup on the
first set I had filled out. I never filled any out except for the oddles of
paperwork that Steegie required me to fill out when I first seen him..
actually to be accepted to be seen by him. I now know that was to be
accepted into research though I was never told that. Don't mean to rant but
I get so angered when peoples problems and pains are taken advantaged of for
the almighty buck or furtherment of someone's elses life. I know research is
necessary but one should be informed and the patients own health comes first
Hope this helps and I will look up the doctor's name. Another GYN
Onocologist at CMC does extensive adhesive surgery also but after he did my
hysterectomy(the resident did) and left half a ovary and the back part of
the uterus in then lied about it I don't reccommend him either. MRI's don't
lie and when he was confronted along with the resident they admitted that
the adhesions were massive and they felt it would be better to cut around
the areas they couldn't release. Originally for 3 months post-op they said
they got the entire ovary. The resident did his own postop medical record
and put that they couldn't find my left ovary. The surgeon put that it was
found and ressected. The other surgeon...my regular obgyn finally admitted
that they had difficulty removing the left ovary and part of the back of the
uterus. Of course I don't go to any of them any more and it took three
months of their lies before they admitted to what they had done. I think
that the surgeons were out playing golf while the resident hacked me up. I
was sent home with a high fever postop(resident on the weekend) only to have
to be readmitted 12 hours later developed sepsis, blood clots and almost
died. I was in the hospital almost 6 weeks and thats when we started to
realize what they hadn't done during my surgery. A few weeks later it was
all confirmed when another suspicious doctor ordered a MRI and CT scan. And
here I am still bleeding monthly some 4 1/2 years later which just adds to
the adhesive mess and autoimmune disease. I flare-up terribly during the
time of my period. I'm hoping menopause comes soon(I'm 41). Buyer beware..
the medical feild has some major flaws. God Bless You all, Deb
-------Original Message-------
From: adhesions@adhesions.org
Date: Tuesday, May 07, 2002 22:00:38
To: Multiple recipients of list ADHESIONS
Subject: Re: Endo return or Adhesions
At Tue, 26 Sep 2000, Deb Stevens wrote:
>
>Meg,
>I have a question: How dod they decide that you had a return of Endo and--
>or adhesions?? I'm going through the thought process of this now with my
>doctors! One says that he's been inside so many times that he's sure
>that all is removed but to be on the safe side let's see what will
>happen when taken off harmones!! Anyone with a clue what is supposed to
>happen (more pain or less and if there's no change how can one know if
>there's not already endo?)Another doctor is agreeing with the first
>stating it's probably not the cavity causing problems but the wall
>lining! And another is suggesting that he sees I'm in pain but soen't
>know what to do for me as he's not sure at all what's causing it!
>I know that we've heard about the wonderful doctors in this group, which
>I'm glad to see that they are available to some of us, but at what point
>does one decide that it is adhesions causing the pain and what to do
>about it?
>Deb
>At Tue, 19 Sep 2000, Meg wrote:
>>
>>Hello
>>New to this site.
>>I had a TAHBSO on 4/00 due to severe endo and adhesions. Today, I was
>>diagnosed with the return of endo. Dr. feels the endo can be controled
>>by hormones, and the adhesions will "go away with time". My pain is in
>>my lower back with intermittent bowel problems. I have done my research
>>and there is nothing about adhesions just going away. Second, I really
>>don't know who to turn to, a surgeon who specializes in adhesions or a
>>local endometriosis center. I think the endo ctr will cut the adhesions
>>but not with the care and barriers recommended.
>>
>>Any advice is appreciated,
>>Meg
Hello,
I am also new to this site and am being told the same thing alot of you
are. I have had previous abdomen surgeries (most recent 1996 abd.
hysterectomy and 1999 Lap. surgery where adhesions were cut loose - by
a dr that specializes in this field). However, yeterday (as well as the
last several visits) was told he doesnt think the adhesions are back. He
said I have "straight back syndrome" and is wanting me to try PT. I
tried PT last year with no relief. I know the adhesions are back and
told him so. I have back pain, abdomen pain, nausea, and problems with
my bowels. I cant travel very far for help. Anyone know of a place
near Rock Hill SC? Dont tell me Univ. of NC at Chapel Hill because that
is where I have been going since 1999. They are wanting to start this
referral business again (dr. to dr. to dr.) and I'm not going to do
it. I do need some relief though!! To your question of how do you know
if the adhesions are back? I know because the pain is the same pain I've
had since 1994. I KNOW when they are back and you probably do to. The
problem is convincing the Dr. they are back and getting someone to do
something about it!!
.