Bev is pain-free following her April 22, 1999 adhesiolysis...( PART 2 )

From: Helen Dynda (
Fri Mar 16 14:39:57 2001

Re-evaluate your medications!! You MUST be taking an analgesic ( pain med ) on a consistent basis for it to be effective in your system to combat the pain. It is also imperative that you take an anti-inflammatory.

As for an MRI, Cat Scan or any other high tech medical test for a person with a history of adhesions, I feel it is a waste of money and time. A simple ultrasound and abdominal x-ray will detect any abnormal pathology in the abdomen. If you feel that you are suffering from the same type of pain in the same region -- as with your previous adhesion problem -- then you surely don't need anymore tests, if an ultrasound proves negative! Everything else will be negative too; and your doctor STILL cannot diagnose your adhesions as the cause of your pain -- unless a diagnostic laparoscopic surgery is performed.

Your Dr. can't say that your pain is caused by adhesions until he actually sees them; but you can pretty much be assured that the pain is from adhesions -- if you've had adhesions before -- if the results of your tests are negative.

You can say your pain is being caused by adhesions -- and not have to worry about getting sued. Your doctor can't! He sure might think your pain is caused by adhesions; but he really, really cannot say it -- until it is proven! BUT, as long as all medical tests rule out abnormal pathology, you DO have CHRONIC PELVIC PAIN and that IS recognized as a medical condition; so get on a pain management routine and take it from there! A doctor HAS TO respond to your request for that!

There is NO other effective pain management for adhesions: NO massage therapies ( the adhesions are located too deep within the cavity for "breaking down," etc.. ); and NO types of linaments or balms, which will either reach or penetrate the peritoneum. The peritoneum tissue is there to PROTECT against the invasion of infectious and foreign matter. That IS OUR problem to begin with! So please be carefull folks with paying out bucks for things that sound good -- but WILL NOT work on the adhesions!

Relaxation, massage, and such WILL help relax the adhesion sufferer -- and there is something to be said for treating the emotional as well as the psychological self. In fact, it is imperative to do that!! And therapy for family members -- support, education, and ideas as to how to live with one who is suffering this very painfull and debilitating disorder. The impact that "Adhesion Disorder" places on a family is no different than a diagnosis of cancer, Muscular Dystrophy, Multiple Sclerosis, or any other debilitating disorder -- only that our disorder is just beginning to be focused on. How much focus it gets is up to each one of us! So learn about it!! Educate your doctors about it!! Don't be afraid of it; because it can be effectively lived with...and, most of all, THERE IS HOPE !!!

If a medical facility DID NOT perform medical tests on a patient, who presented with complaints of pain -- and just assumed that their symptoms of pain WERE due to adhesions ( because the patient has a history of adhesions ) -- what would you do if you DID have a tumor or cancer and it went undetected because of a doctor writing your pain off as due to adhesions -- without checking into it? I'd be pretty miffed!

My contact with the Mayo Clinic indicated to me that a number of the doctors DID in fact feel that adhesions in and of themselves caused pain. Like almost everywhere else though, they have not come up with a practical treatment or surgical procedure that would be able to benefit an adhesion-former. Mayo Clinic doctors will work with an adhesion patient through pain management. I did start my pain management through them. ( I cannot see a basis for an "investigation" into the Mayo Clinic or any other medical facility because they perform medical tests on those of us who have a history of adhesions. )

I was found to have TWO tumors -- and that was only through an adhesional lysis -- that I elected to have done in New York City under Dr. Reich! If he had not found them, who knows what might have happend to me. I would not allow any local doctors to perform anymore tests on me -- as I was convinced that ALL MY pain was from adhesions and that there was no valid reason to put myself through testing that would have negative results for abnormal pathology -- let alone pay for tests over and over again. Boy was I wrong!!!

So I have to advise all, for what it's worth, that testing is necessary and could save your life! If all tests have negative results for abnormal pathology, then it is probably your adhesions. It is then up to you to determine the next step -- surgery for them or live with them and try pain management.

I do believe that the more educated one becomes to their own disorder, the better equiped they will be to discuss treatment with a doctor -- even down to what needs to be done in a surgery, if you elect that route! I also feel that adhesional lysis, performed in a certain way, CAN reduce the amount of reformed adhesions; and, in all probability, decrease the formation of de novo ( new ) adhesions.

I firmly believe that there are NO adhesion barriers available today that will be effective in dealing with adhesions -- and I mean NONE!

Once you learn what type of procedure is best for an adhesional lysis, you can discuss it with your surgeon -- even dictate how and what you wish to have done for you and this disorder!

Always remember these words..."YOU ARE NOT ALONE!"

I stated the other day that if anyone thought that adhesion disorder can't kill...ask Dr. Wiseman who the second victim of Dr. Kavorkian ( Dr. Death ) was...well I'll tell was a 56 year old woman who suffered chronic pelvic pain! Our disorder, ARD...OURS!!!

I suffered and still suffer from this disorder, surgery or not...I am addicted to pain meds and am withdrawing from them at this time. I am scared to death every time I eat as I think I'll get constipated and will suffer such horrible pain...BEFORE, DURING and AFTER I defecate...yes, have a bowel movement. I live with the fear that I'll start to pee my pants again as I did for 10 years...and I am ONLY 48 years old that put me at 38 years old living liked that!

Every little pain I get in my abdomen fills me with fear that the adhesions are back...but then I talk to myself and run through what I have learned about OUR disoder and I settle myself down and I am better... better for awhile.

Because I have educated MYSELF about adhesion disorder, I will make it through this part of it as well; but I will always live with that fear of them is ever present in the back of my mind and I find myself feeling anxious at times to live every minute that I have now...and I will! I share only from experience and what I have learned living with this... I don't know anything any better than the rest of you -- maybe just from a different perspective, thats all.

I need to hear your perspectives also. No, not for personal gains, not for any study, not really for any other reason than the fact that you have what I have; and I am so grateful for the sharing as that to me IS educating myself yet on all this new stuff. Thank-you Helen, Anne, Chris, Michele, everyone who has the courage to reach out to touch the lives of fellow sufferers like me...and let's build this thing...and let's pray for strength and folks....

I WAS dying as I lay on my couch not being able to eat, I vomited all the time...had become intolerant to ALL my medications last September ... couldn't have a regular BM without laxatives, and I couldn't sit for over 10 minutes without excruciating pain...went outside only 2 times in April 1999 ... that was to make the trip to New York City for surgery...2 times. I went from my bed to my couch ... took pills, waited, oh god how I waited for 7pm so that I could take my heavy dose of sleep and pain pills and go to bed again!

I remember looking outside and my husband asking if I wanted to try to take a walk...I was too weak and he knew that; but I said no as it looked like it was going to rain, it looked cloudy and not real inviting to me. You know what, friends. My husband said the sun WAS shining and there wasn't a cloud in the sky! But, by the grace of GOD, it looked uninviting to ME...and I didn't have to suffer the reality that I was just too ill to even take a walk outside.

What a good GOD I have...didn't want to tempt me, I guess...but I really think he didn't want to hurt me even more! Social life...nope, not interested...couldn't eat or sit anyway...hadn't sat at my own kitchen table in two years. If and when I ate, it was reclining on the couch!

I loved my husband and 3 children so much...but I was ready to go as I was just so tired -- not unhappy, not unloved -- just ready to sleep forever and not lay and watch life go by, even that didn't matter anymore...I was just so tired! The thought of dying wasn't scary...wasn't depressing. It wasn't really anything as I was just too tired to want tokeep laying around vomiting and in pain so that everyone else was at peace knowing that I was still around or something...I WAS DYING!

What IS life if it isn't living? What is the highest quality of life for me? To just be able to get up in the morning and move vomiting, not a lot of pills, to be able to eat. I pretty much still live on egg custard and yogurt, some scrambled eggs. NO CHEESE as cheese is so constipating that I will forever be afraid of it...and I live in the dairy state of WISCONSIN -- so I won't be doing any commercials, I suppose!

I mentioned to my husband the other day how bright the sun was shining as we were preparing to take a drive...with ME sitting up in the FRONT seat, not laying in the back with that IS life!!! I notice all the little things now...but to me they are the big things. I went and shopped for groceries last week...alone!

Two weeks ago my husband said he was getting tired and was going up to bed. I said, "Ok, honey, I'll be up in a bit when I finish puttsing here." He stopped and looked at was 10pm!! He was looking at the clock, so I did too...we both started to laugh. HE was going to bed and I was staying up! Then we just hugged and I started to cry...I mean REALLY cry ... you see I WAS STAYING UP!!! That's all...just something so simple; but to me it meant LIFE....

I can't continue sharing right now. I'm sorry, but all this reflection causes me to have to deal with this and I can't...I just want to enjoy the time I've been given. Please offer support, education, your stories ... anything that will reach out and give hope and a chance for life for all adhesion sufferers...all who suffer pain for whatever reason... for GOD sakes...if for no other reason...for yourselves!


Bev ( )

Enter keywords:
Returns per screen: Require all keywords: