Re: General comments on living with adhesions

From: Christie (
Tue Jul 2 18:24:12 2002

At Wed, 29 Mar 2000, Nancy wrote: >
>Hello from Canada. After reading the various posts to the forum over
>the past week, I guess it's time to tell my story.
>Thirty-eight years ago this August, I was rushed into the O.R. for an
>emergency appendectomy. I was 3-1/2 years old. Whether it was
>incompetence, inattention, or urgency, they neglected to put mitts on me
>prior to the surgery, and for some strange reason there was no one
>watching me in the recovery room after surgery. This took place in a
>small hospital in a country town of about 5000 people. When I was
>coming out of the anesthetic, I removed the dressing from my abdomen and
>had pushed my fingers through the incision to my intestines. When the
>nurses discovered this, they simply re-dressed the incision, in spite of
>the stitches being pulled through the flesh and the incision gaping
>open. To make matters worse, I was put in the infants ward in a crib,
>where there was not a nurse in attendance at all times, and parents were>not encouraged to spend any amount of time. Since I was fully toilet
>trained, I did not want to pee in the bed, but instead climbed over the
>side of the crib to go to the bathroom.
>Over the years, I have been subject to intense menstrual pain, to the
>point of being able to count on missing two or three days of school each
>month as a teenager. Many years ago apparently there was some
>discussion about redoing the scar tissue to "neaten things up", but the
>doctors decided this was not necessary. When I was pregnant with my
>daughter, my GP expressed the hope that I would have to have a Caesarian
>so that he could remove the old scar tissue, but that did not happen (I
>was only in labor for 3 hours).
>In November 1989, I had lap surgery to have a tubal ligation. No
>problems prior to or after surgery, no comments on internal
>abnormalities noticed during surgery.
>Fast forward to March 1999. Intercourse was beginning to get painful. I
>started losing weight, but developed a pronounced "pot-belly". I was
>working as a cab driver, and had to quit my job because of the intense
>pain in my abdomen. I had started going to my GP April, trying to find
>the reason for the problems I was experiencing. She sent me for an
>ultrasound, which showed nothing. She did an internal and a pap smear,
>which of course showed nothing. She sent me to a gynecologist, who also
>did an internal and found nothing, but he was able to recreate the
>intense deep abdominal pain that I was experiencing during intercourse.
>I was sent for another ultrasound, which again showed nothing, and was
>referred to a urologist. He examined me and scheduled me for a
>While I was waiting for the cystoscopy, my GP scheduled me for a barium
>enema, which showed nothing. By this time, I had lost 15 lbs (I am
>5'2.5", and weighed 128 when all this started), I didn't want to get out
>of bed in the mornings, I was taking 1600 mg of ibuprofen a day, and the
>pain was constant. Forget about sex, because it increased the pain to
>even get sexually excited. I finally had my cystoscopy in December of
>1999 after throwing a screaming hissy fit when the nurse brought the
>papers in for me to sign and there was something mentioned on them that
>no one had thought to mention to me prior to this (hydrodistention of
>the bladder). I told the urologist at the time that I saw no reason to
>do this procedure because I was not having problems with my urinary
>tract, he was not going to find any problems with my bladder, etc., and
>he was wasting his time, my time, and Medicare's money. I finally
>signed the papers and underwent the procedure. No surprise, when I came
>out of the anesthetic, the urologist came in to tell me there was
>nothing wrong with my bladder or urinary tract.
>This took me back to the gynecologist on January 20, 2000. He scheduled
>me for a laparoscopy to look for endometriosis, which by this time we
>were convinced was the cause of all my pain. On my birthday, March 2nd,
>I got notification of an appointment for laparoscopic surgery - on April
>28th! At the time, I was leading up to my period, and the pain was
>increasing to the point of going in to the hospital for shots of pain
>meds on top of the ibuprofen. On March 7th, I called the hospital and
>told them I didn't think I could take another two months, which resulted
>in an opening on March 21st.
>March 21st, 2000, 10:00 a.m., I presented myself at the hospital for
>surgery. I was calm, relaxed, happy that we were finally going to get
>some answers. I joked with the nurse, the doctor, the anesthesiologist,
>and walked to the O.R. to get it over with. When I got back to the
>room after leaving the recovery room, my Other Half said the
>gynecologist had been in to talk to him and that they had found no
>endometriosis, but had found adhesions.
>My gynecologist was super. He came in a little while later to talk to
>me about what they had found. He said he found only one small adhesion
>on the right tube from the tubal ligation, which he cut, and he then
>started looking around. When he looked towards the upper right quadrant
>of the abdomen, he found an almost solid wall of adhesions from the top
>of the appendectomy scar almost to my pubic bone (the original scar runs
>from about an inch below and to the right of my navel to about an inch
>above my pubic bone, and is about 1/2" wide - ugly sucker! Crooked and
>puckered.) He proceeded to cut them loose as far as he could, and told
>me to wait and see what happened. If the pain re-occurred, then would
>have to undergo surgery again, and a decision would be made at that time
>as to what type - laparotomy or open abdominal.
>I know this post is long, but the good news is - one week after surgery,
>I have not had to take a single ibuprofen or other pain killer since I
>came out of the anesthetic.
>One point I want to make is that at no time during the past 38 years did
>the adhesions show up on any test or x-ray that I had. Yes, I was lucky
>to have found them so quickly after the beginning of the intense pain,
>and yes, I am lucky to live in Canada where I did not have to pay for
>the testing and surgery. But I did have to pay for all medications
>except for the shots given at the OPD, and I did have to travel to
>Fredericton, 70 miles away, 6 times at my own expense - which is not
>easy when you are unable to work and ineligible for any social programs.
>Helen, I want to agree with you about humor enabling you to deal with
>almost anything. I don't know what I would have done this past year if
>I hadn't been able to find things to laugh at. It is also important to
>know that you are not alone, that other people do know what you are
>going through and trying to deal with.
>Chins up everybody! We are women, and we can make anyone listen to us!

Yes, I have a question regarding scar tissue. I had my appendix out about 10 years ago. I have had abdominal "dull" discomfort for about a year now. I have wasted tons of money going to the doctors (obgyn., urologist, and GI). Do you think that I could be experiencing adhesions? If so, I was told that if it isn't bothering me that much, I shouldn't have doctors go in and remove it because it may cause more. I am worried because I plan on having kids in the future and the area around my right side of the abdomin seems to be very irritable due to all of this. What should I do?>

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