I am glad that you have found us, but sorry that you have had to make the search. And I agree with Bev - the only way that adhesions can be diagnosed is by exploratory surgery, which can by itself cause adhesions. Adhesions will not show up on any diagnostic test, unless there is a complete bowel obstruction or distortion, and even then, they cannot tell for sure what is causing the obstruction
Please go the the main IAS website at http://www.adhesions.org , and click on the Adhesions Quilt link. There you will find stories from everyone on this list who is suffering with Adhesions Related Disorder and what they have been through in their personal searches for relief from this life-stealing disease. Until now there has been no guarantees and very little hope for any of us to regain our lives. Some of us have been through 20 - 25 - 30 surgeries in our attempts to reduce the pain and become whole again, some of us will never be "cured" because our bodies will simply give up before they find a treatment that is guaranteed to treat adhesions with no return.
While you are at the IAS home page, click on the Links button and explore what you are facing. This is the only way to know what lies ahead of you.
My personal story is: At age 3 I had an emergency appendectomy, with complications. In the rush to get me into OR, they neglected to put mitts on me, and when I was in the recovery room, there was no one watching me. My inquisitive fingers in scratching an itch, removed the dressing from the incision and pushed through between the sutures to play with my intestines. Needless to say, this caused massive infection, which was further complicated by my accommodations in the infants' ward in a crib. When I had to go potty and there was no nurse in attendance, I simply climbed over the side of the crib and went. From that time, in 1962, I have had an extremely ugly scar from just below and to the right of my navel all the way to my pubic bone.
Although I was an extremely healthy adult, I only had one pregnancy. Thankfully it was successful, but I never again got pregnant, even when I was not on birth control. In 1989, I had as tubal ligation done laprascopically, but there was no mention at that time of adhesions. In 1988, 1989, and again in 1998, I was involved in car accidents while wearing a seatbelt. These incidents all added to the problems in my pelvic area.
In 1998, after the last car accident, I began experiencing severe lower back pain. My doctor at that time blamed it on my job - I was driving taxi 12 to 18 hours a day. It progressed from back pain to pain completely encircling my body at the waist level, spreading down into the groin on both sides, and causing numbness in both legs. I did the round of testing and specialists - ultrasound, barium enema, gynecologist, urologist, cystoscopy, etc., etc. Finally, my gynecologist agreed to do an exploratory to check for endometriosis. What he found instead was massive, dense adhesions running the length of the original surgery site (the appendectomy in 1962), involving the omentum, peritoneum, bowel, intestine, ovaries, tubes, uterus, and bladder. Everything else was perfectly healthy, just tied together in a large ball and pulled every which way from Sunday. He lysed what he felt comfortable working with (meaning the adhesions involving the tubes, ovaries, and uterus), and left the rest. That gave me one week post-surgery with no adhesion pain, one week with little pain, and then right back on the treadmill - constant, unrelenting pain.
My GP suggested the pain was psychosomatic and sent me to mental health, who declared me mentally fit. She then suggested that it was caused by stress from my relationship, so I ended the relationship. The pain continued. She sent me to two local general surgeons, one of whom claimed "adhesions don't cause pain, it's irritable bowel syndrome", and the other who advised me that "we don't operate for adhesions until they cause a complete bowel obstruction." Finally, a year and a half after the diagnostic lap, my GP finally started giving me something other than Ibuprofen for pain control. It took us 6 months to find something that even came close to controlling the pain, and then it only lasted 6 months before she had to change me to something stronger. I have had almost 6 months now of effective pain control - please note that I do not say pain relief, for it is not relieved, it is only controlled enough to allow me some semblance of a normal life.
I have been a member of this board for two and a half years. This board and the information contained on the IAS website is what has kept me from going for surgery. I do not want to end up in worse pain than I am now. I am 43 years old, mother of one, step-mother of one, grandmother of one. I used to be an active adult. I loved to dance, swim, bike, walk, garden, drive, and play with kids, mine or someone else's. The only things I can enjoy any longer without increasing the pain levels are my gardening and my crafting. I went from driving taxi for extended hours to not even driving our own vehicle. I can't vacuum or sweep any more. I can't bike or swim or dance without an increase in pain. I can't walk without my cane, and some days I have to resort to a wheelchair as the adhesions are apparently involving the nerves, muscles, and circulation to my legs, causing pain, numbness, and loss of use. I have, however, learned how to go limp when my legs won't hold me up so that I don't get hurt when I fall.
I know of one woman who has posted part of her story to the Adhesions Quilt but has not yet posted to the message board. She was a family practice doctor. She was assured by her surgeon that he was a skilled laprascopic surgeon who could deal with adhesiolysis. She underwent surgery at his hands, and ended up with a perforated bowel and the loss of her practice.
Another woman I have become acquainted with on this board is again, to the best of my knowledge, in hospital fighting yet another kidney infection. Bev can give you more details on Karla, but the bottom line is that because of repeated surgeries for adhesions, Karla's life is in danger.
We all live with the same pain you are dealing with, some less, some more, but from the same root cause. Yes, we do sometimes get to the point where we have to give in to surgery because we simply cannot stand the agony any longer and the pain meds aren't even coming close to controlling the problem to allow us to function, but when we do go under the knife, we know what we are facing and choose the best and most experienced adhesion specialists we can possibly afford.
Rosealie, I am not saying don't ever have surgery, I am simply saying know what you may be facing. If you need information on a specific subject, do a search through the message board archives for a keyword or two. I am sure you will find information about almost anything related to adhesions. If you can't find what you are looking for, post a message, or e-mail me personally, and I will try to find the information for you.
May God guide your steps, my friend. Pain-free gentle hugs,
Nancy in NB