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Adhesion nightmare Adhesion nightmare

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  #1  
Unread 05-09-2004, 11:23 AM
Adhesion nightmare

Hi hystersisters,

I haven't posted in awhile now. It has been almost 6 mos. since the TAH.

I was advised in late January that I have an adhesion as severe pain developed in my left side and was shooting down my left leg. I was screaming in pain!

My doctor (the gyno that did the surgery has dumped me) told me that this is an adhesion problem.

Since it was diagnosed in late January, it slowly began to get less intense painwise. I was feeling encouraged.

Then, just last week for some reason, the pain has come back and it hurts quite a bit but it is not as intense as it was when it first presented in late January.

I am beginning to feel hopeless about this situation. Am I stuck with this pain for the rest of my life?

It now hurts me to stand up and sit down again and it hurts when I cough or sneeze. At night, it hurts when I turn over or move in certain ways. I still suffer from very irregular bowel movements and constipation. Pain pills help, but only to a point. I am not taking very many of them being they add to the constipation problem. I am still taking the stool softeners and they sometimes seem to help, other times its like I've taken nothing at all.

Any ideas on what I can do about this adhesion problem?

I am very depressed needless to say.

SueF
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  #2  
Unread 05-09-2004, 12:10 PM
Adhesion nightmare

I am sorry to hear you are having such painful adhesions! I do not have any experience with this but if I were you, I would most definitely find a doctor who can look into this. You should not have to live with such pain.
  #3  
Unread 05-09-2004, 12:31 PM
Adhesion nightmare

Hello,
It's my understanding adhesions can be dealt with but it does require some invasive techniques. Nothing like a hysto and probably something more with a laser and laproscopic methods. Probably outpatient. Talk to a doctor and the sooner the better, you owe it to yourself to be as pain free as possible. Good luck!
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  #4  
Unread 05-09-2004, 12:53 PM
Adhesion nightmare

Thanks!

I don't think I have a choice but to pursue this further. They've already run a lot of tests on me - all came out negative.

Next is a CAT scan I guess.

I am so frustrated and in pain that I just want to cry. I am sick of this!

This pain was there immediately after the surgery but manifested itself to the severe pain in late Jan. Probably by the time it showed up the anesthesia from the 4-hour long surgery was out of my system, hence the appearance of the severe adhesion pain.

I was told by my doctor (who is an internal med. doctor who just had a TAH herself) that surgery for the adhesion could and likely would result in the development of more adhesions (and she figures I have plenty being the surgery was so intense) and the pain problem could become even worse.

I am really angry at the gynecologist for dumping me. As soon as it became ugly, it was hasta la vista (FAREWELL). The obgyn's bill of almost $15,000.00 has been paid with no thanks nor future medical attention.

On edit: What type of doctor should I be going to that could perhaps more adequately address this adhesion problem? Any idea welcomed!
  #5  
Unread 05-09-2004, 11:01 PM
Adhesion nightmare

Sue,

Just wanted to let you know that I am soon to have my gallbladder out because of the pain that I have experience about 2 weeks post op. I have had ultra sounds, a hida scan, endoscopy, blood work, and a Cat Scan yesterday. Not sure about the Cat Scan yet, but everything else came back negative just like yours. The gastrologist suggested that I had adhesions, so I told the surgeon, who will remove my gallbladder, this info. I asked the surgeon if there was a test to see adhesions and he said that the only way to see adhesions is to do surgery. Doctor said there are no test to find/see adhesions. If you have a doctor that says they can and they find adhesions I say great, but if not just remember this info.

Hope it helps and hang in there, you are not crazy you have adhesions and they are very very painful, it is A DRAG AND IT IS NOT FAIR!

Take care!
  #6  
Unread 05-10-2004, 12:36 AM
Adhesion nightmare

SueF, your situation sounds almost identical to mine..immediately after surgery i started complaining about a strange pain/pulling/tugging/bungee cord sensation..was painful to sneeze/cough/exert abdominal muscles/etc...I complained to my GYN (and to anyone else I came in contact with) right after surgery and every week thereafter for 6 weeks only to be blown off..i still persued this phenomenon with the dr through Sept/Oct/Nov/Dec/Jan, still only to be blown off and made to feel as if I were making it up or had become a hypochondriac..the dr even made a statement to me that sent me over the top...I found another GYN (via the phone book and taking my chances) who I made an appt with in February who immediately said "sounds like adhesions" after hearing my complaints (i also had a suspected hernia and was sent to a general surgeon)...the two of them gave me the option of having both fixed (hernia and adhesions)..fortunately no hernia was found, however I had "significant adhesions" that the GYN took care of..though it didnt take away all of the discomfort/swelling/pulling/tugging/etc, it did make a significant difference (i also had a urethral sling put in at the same time)...the surgery would have been outpatient had I not had the sling procedure done..it was all done laproscopically and with very minimal discomfort...unfortunately the only sure fire way to diagnose and treat adhesions is with surgery..and this in turn can cause more adhesions to form..it can very well be a catch 22 and a gamble....I would say that this is a problem for your GYN (saying this because the general surgeon I had didnt do anything during surgery (didnt even scrub in), just looked at pictures taken by my GYN)..make an appt and discuss all of your symptoms with him/her and then weigh the pros and cons of treatment..it sounds like youre in significant pain thats altering your daily life......hopefully you'll get some answers and the best treatment option for your situation.........stay well..diana
  #7  
Unread 05-10-2004, 05:24 AM
Adhesion nightmare

Hi~
Sorry your going thru this. I can sure relate, as I have had 13 major surgeries do to adhesions, and have ARD (adhesion related disease, and Keloid) I have a tissue expander in my pelvic area to try to help with this, but to no avail as after surgery #13, a car accident messed it up, and I am back in terrible shape.

I have massive adhesions from up under my ribs to the colon and pelvic floor. My bladder, intestines, colon and ab wall are all cemented together from the amount of adhesions I have and I get kidney infections from them being irritated from the adhesions on them. I can only eat certain things due to digestion being painful from the pulling on my insides when things move at all inside. yes, it is a nightmare and a huge mess.

I need another major surgery to correct the damage the MVA caused ( and messed up the last surgery) as I get obstructions alot and it is painful , not to mention dangerous. The problems with adhesions is, they don't go away on their own, so surgery is needed to clean them up, but surgery cause more adhesions, so it is a bad "catch 22". There are a few really good sites about adhesions and the pro's and con's of having surgery for them, due to many in my situation that have a problem with having a body that produce alot of adhesions and over scar (not to mention Keloid) I Keloid terribly, so it is very difficult to handle my situation.

If you would like to talk further about this feel free to PM me, and I will give you some good sites to get info about this from, and can go into my experiences a bit more and see if I can help in any way. It is a bit overwhelming to try to go into much with all I have gone thru, and I am having a very bad pain flare lately.

I hope you can get some help with this, and the more informed you are the better! Do NOT let anyone do surgery on you until you are fully informed and know all pro's and con's for and against it. Too many people are suffering more than need be due to having surgery for adhesions when it was really not in their best interest.

Take care, sweety, I know this is very difficult.

Hugs,
Lori
  #8  
Unread 05-10-2004, 07:52 AM
Adhesion nightmare

I think the general surgeon may be the one to deal with this matter ... I would seek other drs who would listen or at least refer you ... you should not have to go through this pain

mei
  #9  
Unread 05-10-2004, 11:25 AM
Adhesion nightmare

Hi again and thanks again,

Today, the pain is not so bad. I think that the idea about what you are eating is possibly the culprit for the intensity of the pain suddenly coming back last week.

I've been doing a major munch out on pistachio nuts the past couple of weeks. I have been advised that these are very difficult to digest and possibly irritating the problem.

I really don't want to have any more surgery ever because I have a serious pre-existing disabililty (multiple sclerosis).

I've been wondering now if perhaps this problem is some sort of nerve damage.

This pain was there from day #1 as I have previously stated but when it came to crying and screaming, yikes!

If this problem doesn't cool down A LOT this week, I'll go back to my regular doctor and ask for a referral to a general sugeon.

My experience has been that they do not want to operate on me due to the risk associated with having MS. I have a gallbladder problem too that was diagnosed almos 10 years ago. They wanted to remove my gallbladder at that time, but I said no being I have no real annoying symptoms from the one large stone inside of it.

Thank you ladies again for your kind support and recommendations.

I am distressed greatly as I was just beginning to get out and around again - taking the dog for walks, etc.

This is been a rough recovery and I'm thinking I am stuck with this adhesion (it is left of the insision site below the belly button). Just what I did not need and right after I found out it was an adhesion (something I'd never even heard of!) I got a review letter from Social Security to see if I've improved.

:cry:

I wish they'd leave me alone so I just might have a chance to get better! :cry: again ....
  #10  
Unread 05-10-2004, 11:52 AM
Adhesion nightmare

Hi-

I had a TVH last June & it was "uneventful". I did, however start having pains at about 7-8 wks out. It was pretty mild, the stretching type pain on both sides. Now I have constant pain that worsens when I am more active. It is concentrated around my ovaries. I also have multiple cysts on my ovaries, but all drs. say this should not be the problem.

I finally went to my sister's gyn. who is very experienced in laparoscopic surgery. He seems to think that it's adhesions. I go in May 20 for a diagnostic lap & poss. oopherectomy (ovaries out). What he does, if there are adhesions, is to separate everything and then put in degradable barriers to keep the adhesions from reforming.

We'll see how it goes! I just hope it gets rid of the pain!
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