General comments on living with adhesions

From: Nancy (
Wed Mar 29 12:42:42 2000

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 cystoscopy.

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!

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