Hi. I'm new to this site as well, and the newly "appointed" IAE for Pennsylvania.(Philadelphia area and surrounding). I can only give you some tips and opinions based upon my own experience living with advanced adhesive disease for 12 yrs, but I hope you find some comfort or that I give you hope by telling you that:
Although I now have had 13 major pelvic operations (all of them were exploratory laparotomies, from naval to pubic bone) in the last 15 yrs. When I first started having pain from adhesions (the doctors said I was :a hypochondriac or faKING FOR ATTENTION, or I had "irritable bowel") I went from doctor to doctor, ER to ER looking for help. Finally, out of desparation and too much surgery (everytime I had belly pain they admitted me and opened me up!) I had one last operation to repain "displaced organs."
You say you are seeing a Physical Therapist who wants to manipulate your organs? BE CAREFUL. While I am sure she is competent in her field, keep in mind that adhesions can be 2 different types.....thin, gauzy and easily broken apart (flimsy ) OR thick, sticky and like rubberbands. Hard to "snap" and often vascular. (vessels involved) Gentle manipulation of the intestines and non life essential organs may be enough to snap the thin webbing you have but I would definately ask a surgeon or someone involved in a medical capacity with this site before allowing anyone to move your pelvic organs around. Some doctors can feel thew hard, lumpy layer of adhesions with their hands. Others can/t. Many doctors untrained in surgery and adhesions are sure that unless they can be felt, they aren't severe or serious. NOT TRUE.
Surface adhesions...those above the organs and right beneath the muscle layer are easier to feel than those that have webbed beneath and around the deeper organs....uterus, tubes, ovaries, underside of the bowel and bladder. These can be much thicker and the cause of the pain, especially if they adhere organs to organs and involve nerves..
I am not licensed to practice medicine, so you need to ask questions of those who are. I assume the PT will gently press with both hands, palms down against and around the superficial organs and attempt to gentle break any surface banding. But again, please don't allow anyone to mess around until you ask for a 2nd and 3rd and even 4th opinion. I can only think of my own situation where my doctor attempted to snap the adhesions under my belly button and because they were banded around the small bowel, I suffered a strangulation of 1/2 inch of intestine and it became necrotic and I had to have it resected.
I am afraid that if she tried to help you vaginally and you ended up in the ER in excruciating pan, you may be borrowing major trouble. Good intentions aren't always good decisions.
Meanwhile, treat the pain with meds, if the meds aren't working, ask your pain management doctors to review anbd maybe re prescribe a combination of meds to help you. If you've been on drug "A" long enough it's pretty likely you've developed a tolerance. Maybe Drug "B" is a good step to take.
Finally, while I don't want to frighten you, and speaking from experience only, I think it's a wise idea to ask the therapist to hold off on further treatments and manipulations and wait to see if there is someone with a safer idea. Pain management clinics are like all other medical practices. Some are the top of the top and some are absolutely bizarre. The doctors know that the longer they keep you the more the insurance company pays them, and while this isn't true in 90% of the cases, that 10% are dangerous. Get the opinions of others and then make an educated decision. Until then,tell everyone, " HANDS OFF MY BELLY!"
I'm here to help you all I can and welcome your response. Unfortunately, because signing on the Adhesions.org mailing list with my e-mail address here at work was too dangerous. I had 20 e-mails back and forth from people I didn't know, talking to other people I didn't know and my company frowns big time on this. But anyone, including you who wants to contact ME directly, dpecifically to talk to me or share with me may use ginny.halpern@nextel.com Mon-Fri 8AM eastern until 4PM
Love, luck, and a sticky-free tomorrow! Ginny
-----Original Message----- From: momofverymany@aol.com [mailto:momofverymany@aol.com] Sent: Wednesday, May 02, 2001 3:56 AM To: Multiple recipients of list ADHESIONS Subject: Re: Physical Therapy
At Wed, 2 May 2001, Lori wrote:
>
>Hi all, I am new here. I have seen 5 doctors in the past year for
>chronic pelvic pain with no diagnosis. I had a lap in November to rule
>out endometriosis. Well it did that but they found a few adhesions and
>removed them and used Interceed also. This doctor said I was
>cured..lol...I knew then that adhesions could reform almost immediately
>after surgery. I have since seen 3 more doctors and finally was
>reffered to a pain clinic. One of the therapist there was a physical
>therapist, she said she could "feel" the adhesions. My GP says no way.
>She also says she can help the pain, not cure it but help it so I can
>live my life. She will be doing organ manuvering?? Has anyone heard of
>this?? and what it entails?
I have been under the care of two different physical therapists in the past 15 months. One was rather odd, and said she could feel that my "shockra" was misaligned and succeeded in nearly tearing open an 11year old c/section scar. the second I have been working with now since February. she does something called visceral manipulation which as near as i can tell moves my organs around and tries to "unstick" the ones that are unstickable.
I can tell you right now there are days when I am sore as heck from it, but I feel I am making some headway. I'm now a 9 instead of a 10 on a 1-10 scale. she has been working mostly abdominally. she has done one vaginally session which sent me to the ER in uncontrollable pain, but that's me. I'm guessing thats more than likely where most of the work needs to be done.
My therapist is very kind and went into the field because she is a cosufferer and was unable to find a therapist in the area. she went for additional training. I feel I am in very good hands.