Yes, I can relate. I believe I have been dealing with lots of gastro issues- involving both abdominal and pelvic areas- for close to 28 years now, and I think the culprit is adhesions.. My abdomen and pelvis feel totally frozen! Forget kegels- nothing moves! Although, unlike in your case, I have never found a physician who was even willing to discuss the issue of adhesions, nevermind attempt to operate on them. My pain and problems have always been chalked up to IBS which of course is totally useless. I’ve done everything diet-wise, been to physical and massage therapists as was recommended, but no relief. I feel as though I’m being strangulated from my upper abdomen to my pelvis. My symptoms cause me great grief on-the-job and has meant virtually no personal/social life all this time.
One argument I often read about regarding adhesions is that they do not show up on imaging tests and it takes more than mere suspicion that one has adhesions to justify doing an exploratory lap to find them. I recently saw on a website called EndoTimes about one woman whose adhesions were visible on a barium swallow test. I also wonder if a barium enema would show them. If this is true, it seems odd that nobody noticed this before or were we not supposed to know we had adhesions? It is definitely not a popular topic but if you google it there is tons of info describing the pain/problems they can cause as well as various attempts to come up with an effective adhesion barrier so you know that those who say that adhesions don’t cause pain/problems are either lying to you or just don’t want to deal with them.
I also have read about adhesions being visible on what is called a Functional Cine MRI which is being used in Europe but I have not found any info on its use for finding adhesions in the U.S.
The physical therapists, as well as a medically-oriented massage therapist that I now go to all have said that I have a lot of very tight adhesions. I was able to have an exploratory lap about 20 years ago where they said they found nothing but recommended a hysterectomy due to fibroids which I didn’t want at the time. But what was interesting was that I got 2 weeks of relief from my symptoms- my abdomen shrunk in half, but then everything slowly started tightening up again and I was back where I was before. I didn’t know about adhesions back then but now it is the only explanation for that wonderful but brief reprieve from my horrible symptoms. The doctors who did the lap said nothing about adhesions and could give me no reason for my brief improvement. Supposedly it was ‘psychological’ that I just THOUGHT I was better but believe me the change in my symptoms and appearance was radical!
I finally had a vaginal hysterectomy about 12 years ago which did nothing to help and I don’t think the surgeon even looked for adhesions as he was several hours late due to having to delivery a baby and I have actually had more pelvic floor problems ever since, like symptoms indicating a fistula and a constant infected feeling on my left pelvic side and it has a terrible odor but when I tried to get help I was treated like I was nuts.
I’m trying to find a gastro who will try and find a cause for my problems and not throw me under the IBS bus again. I really don’t know where to begin. I tried going to a colon-rectal doc in my area for the possible abscess/fistula in my sigmoid area but he only spent 5 rushed minutes with me and left. Obviously not interested! When I try googling for adhesion doctors I always come up empty.
In your case, once you had adhesions removed, were you given any advice as to how to try and prevent their return? Like going to a massage therapist? I’ve also wondered whether blood-thinners would help or even certain anti-biotics to prevent infection. Also, were any barriers used? And were your adhesions just lysed or cut? I have read that while lysing is safer, cutting and removing what they can is more effective. I have also read about 2nd and even 3rd look laparoscopy where, a week or so after the initial surgery, they go back in and remove any new adhesions that have began to form. Supposedly, at this early stage, the newer adhesions are softer and easier to remove, leaving less damage and making it less likely that new ones will form or if they do, they are less likely to cause issues. But I’m sure that insurance companies would not like this to be SOP as from what I’ve read, if they pay anything at all it is not much which I imagine doesn’t make adhesiolysis a popular procedure for surgeons.
I have read of some patients leaving the U.S. for help with adhesions. A place in Germany comes up a lot. I wish I had the nerve to go there myself but then don’t think I should have to. If I could find the right doctor, I’d even be willing to discuss paying so much $$$ out-of-pocket if needed but like Dr. Oz said on one of his shows, doctors don’t like to talk about money but they really should be willing.