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Unable to work due to adhesion pain...(new to site!) Unable to work due to adhesion pain...(new to site!)

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Unread 11-16-2005, 03:45 AM
Unable to work due to adhesion pain...(new to site!)

Hi there...

I'm brand new to this site and thought I would just 'dive right in'!

I had my hysterectomy just about 2 yrs ago.
About 6 months later, I started having the left side pain it seems alot of others have as well...

Jumping ahead to the present day, now almost 1 and 1/2 yrs later, I am unable to work due to the severity and constant pain from the adhesions, which were found via a diagnostic laproscopy.
My dr has told me that 'I have a serious situation, and that this is an extremely complicated procedure'...
Apparently these adhesions are attached to my bowel...

(Since the dr was so 'serious', it really kind of freaked me out a bit)...

I had my hysterectomy in the states, (I now live in the UK), and the waiting time for any surgical procedure over here can be quite long.
I am scheduled for surgery to remove the adhesions Dec 12.

I am on pain medication 24-7, at least several times a day...
At times the pain is so intense that I ab-so-lute-ly have got to lie down completely straight...I can't be turned sideways or anything...
Even just sitting does not help...I have just got to be lying down.

I've found that using a hot water bottle 'feels good', whether it actually helps or not, I don't know (?)

I also have developed some 'crazy' serious leg pain, with bizarre sensations.
I wonder if anyone else has experienced in their leg(s) any 'numbness', 'tingling', 'hot and cold', sensations, along with the normal pain???

Does anyone know if the adhesions can mess with the nerves? That is what it seems like...

At first, I only had the left side pain, but strangely enough, after the laproscopy, the right side pain started as well, and is now in full force.
Sometimes the pain is only one 1 side, other times it is on both, (now that is painful!)

I have already spent quite a bit of time investigating the posts and articles on this site, so much great stuff to read! And, I shall continue to investigate...

But, I just kind of felt like sharing a bit myself...living over here in the UK, I still don't have that many outlets for sharing about my situation.
I have not been able to work for the last 5 months, and that really has been a biggie to accept...
I really am, for right now, physically unable to work...it still seems so incredible...very, very hard to accept.

Another thing I am scared about are the facts I was told re: my next surgery to remove the adhesions.
Has anyone else heard these stats?
1/3 of women have complete relief from all pain
1/3 have some relief
1/3 have no relief

I do know that the adhesion situation is really a catch 22 deal...the 'cure' is also the 'problem'...they can come back.
Has anyone else out there experienced any of what I've described?

One last thing...it has been really difficult for me, at times, because my husband so hates to see me in pain, and often I find myself then trying to 'comfort' him...

This has got to be one of the most 'interesting' situations I have ever found myself in...

I mean, do these things totally debilitate people?
What happens if the surgery does NOT work?
What then?

Ok, I promise to end now...I won't write a 'book'...

However, if anyone has any words of wisdom, that would be really great...

Cheers from the UK,
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Unread 11-16-2005, 05:33 AM
Unable to work due to adhesion pain...(new to site!)

I have a propensity to develop adheshions from surgery. They are quite painful, but I have not experienced them to the point that you are. I really can't offer any advice about the nerve thing. Are they going to remove parts of your bowel that are affected (I had about a foot of bowels removed during my recent hysterectomy)? I hope your surgery goes well.
Unread 11-16-2005, 06:20 AM
Unable to work due to adhesion pain...(new to site!)

HI! Sorry you are going through this. My Dr. thinks I have adhesions on the pelvic floor, thinks part of my colon is stuck to my pelvic as I have discomfort with gas or a BM, and sometimes when I wake up in the morning with a full bladder. I feel 100% from my surgery itself, and I told the Dr. at this point to leave me alone, but I have noticed now that I have been released for intercourse since 20 weeks post op I am getting tender down there and am wondering if it is due to possible adhesions. I go to Dr. Nov. 30 and will talk more to him about it, but man I can't imagine having to go back to surgery for it, already had surgery since my hysterectomy.

As for the tingling/numbing sensation in the leg, could it possible be that it is from the pain meds? Does the prescription state anything in the literature on side effects? You might want to discuss it with your Dr. Take care! And I'll pray Dr. can get you back and moving again!
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Unread 11-16-2005, 08:11 AM
Unable to work due to adhesion pain...(new to site!)

Originally Posted by Kay110205
I have a propensity to develop adheshions from surgery. They are quite painful, but I have not experienced them to the point that you are. I really can't offer any advice about the nerve thing. Are they going to remove parts of your bowel that are affected (I had about a foot of bowels removed during my recent hysterectomy)? I hope your surgery goes well.
Thanks for your reply...The only thing I've been told concerning the bowel situation is that it's fairly tricky due to the adhesions being attached right to the bowel. Apparently, there's the chance that a colostomy bag, if the bowel gets damaged, could be in order!
Could you even imagine that???
Sometimes it is a temporary situation until they can repair it (?)
There's alot of 'wait and see' going on here...
With the bowel that was removed during your surgery, does that affect you today?
Thanks again...
Unread 11-16-2005, 09:56 AM
Unable to work due to adhesion pain...(new to site!)

Hi catkeo,
I had a hyst. in late March and found myself in constant pain from the beginning-evidently the pain with normal healing just turned to pain with adhesions as time went on and there never was relief in between. In early September my doctors had a laparoscopic look around and found adhesions binding my bowel to my left ovary and along my pelvic wall. Also some on the pelvic floor. They did a "lysis of adhesions" at that time. I had a LOT of bowel discomfort up untill about 2 weeks ago from the procedure, (so for almost 2 months). My doctor said to give it time 'cause he did a lot of work in there. I asked them to use one of the preventative measures for adhesions. He used a gel that is put in the pelvic area that lubricates and acts as a barrier as we heal, hopefully NOT with new adhesions forming. I got the idea that my surgeon didn't have a lot of hope for it, but I am feeling really good now and PRAY that it stays that way. I read about another product called Seprafilm, that seemed to have better results in preventing adhesions, but it had to be placed by opening the abdomen, (not laparoscopically). I found laparoscopy to be a pretty major procedure, (other ladies breezed right through it)... but WELL worth it so far!
Unread 11-16-2005, 09:59 AM
Unable to work due to adhesion pain...(new to site!)

I forgot to mention that I too was almost completely laid up with the pain from the adhesions. I am sorry that you are going through this, and for so long. I pray that your doctors make some moves to help you get better... and soon.
Unread 11-16-2005, 10:04 AM

Hi, I have actually been suffering severely from adhesions due to the endometriosis and several surgeries for it. The adhesions involve lots of my bowel to the point that I can barely eat anything. My story is so long and I don't want to write a book. But I just got back from having surgery for my adhesions and removal of my uterus and cervix in Antwerp, Belgium. There's a doctor there named Dr. Bruno van Herendael. He is so wonderful! He's a genious when it comes to laparascopic surgery and adhesions. And I wouldn't fear ending up with a colostomy bag with him as a surgeon. He's so smart and careing and kind. He answers every single question, no matter how many, in terms you understand. Him, the hospital and everything were even preferred providers under my health insurance plan and I live in the US! I don't know how I am going to be yet because I'm only just over two weeks post-op, but nothing bad has happened so far. If you are interested, you can look him up at www.etca.be. And you can write to his daughter, Karlien, who makes all the arrangements at <admin note: no email addresses in posts please>
Unread 11-16-2005, 12:09 PM
Unable to work due to adhesion pain...(new to site!)

Hey Kelly.
I also have chronic problems with adhesions. Like you said, the more times I have surgery to remove them, the more they come back. I'm having problems again, which is what brought me back to this wonderful place. There's a lot more to this story than I have time to write about at the moment, but I went to the doctor a few weeks ago, and there was so much scar tissue that she could not even get to my ovaries during the exam. The adhesions are shoving things around inside my body and causing a good deal of pain. Luckily, I'm not to the point where I can't work yet, but I swear I don't ever want another laparoscopy again as long as I live. I hate to cut this short but I gotta run into a meeting so I'll check back when I'm done. Anyway, I feel for you and hope we can chat soon.

Unread 11-16-2005, 03:14 PM
Unable to work due to adhesion pain...(new to site!)

Welcome, Kelly! I had intestinal adhesions just like you, but it sounds like you are quite a bit more pain than I was. I continued to work. I understand the pain though. I also had trouble eating, bowel movements and was nauseated quite a bit. In 2002 I had an adhesiolysis and again in 2005. In 2002 my ovary was stuck to my intestine and then to the pelvic sidewall. Again in 2005 my intestines were glued together with adhesions. I would have to say that there has been slight improvement since the ovary was removed. My gyn said that is equivalent to a man's testicle being stuck to his leg! owie! It hurt. I do feel the adhesions are back again and I am hurting. In 2002 my dr used an adhesion barrier which has since been taken off the market. I guess it didn't work for me anyway. My heart goes out to you as I know it is difficult to be in pain all the time. Lately I have tried some alternative treatments...acupuncture and myofascial release although I have not had alot of relief, but have only done these treatments a couple of times. You will be in my thoughts and prayers.
Unread 11-16-2005, 03:39 PM
Unable to work due to adhesion pain...(new to site!)

hey kelly, i was telling you in an earlier post that my new dr. had given me hope for the first time in years and he said its not 100% but the barriers someone else posted about he mentioned to me and i hv had 14 surgeries and lots of them just to remove scar tissue so i was really excited there could be something to help. i think as soon as the sew me up i start forming scar tissue and adhesions. why did you have to have the hysto? and also i am not being nosey but i dont know what pain meds u are on but i have been in chronic pain since my hysto jan 2002 and i have been on a pain patch for 3years or longer and it works great. i dont have to go thru the ups and down of pills , waiting for them to get into my system,then only really working for an hour or so then it starts all over. the pain patch is made to change every 72hrs, which i have to change my every 2days depending on my level of pain, the dr. gives them to me for every 2days and sometimes depending on my activities or just the day i can go longer. it feels like a no end situtation have surgery to remove them and surgery causes them. what do we do??? i am so sick of living like this and i do feel your pain, my pain is in my back and shoots down my legs also abdominal pain. i havent quit hurting at all since all this first started which was nov 2000 after i had my last baby. its tough and its really hard to stay strong. being here has lifted me up. hope it does the same for you.

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