Scar Tissue/Adhesion Pain

[dlherranen]

I'm not sure if this question has to do with a hysterectomy or not, because I have already had one.  But, I am suffering from severe abdominal pain that started about 3 years ago.  I've had 3 c-sections; a partial hysterectomy (just my uterus removed); and now a total hysterectomy (my ovaries removed) due to cysts.  When I had my ovaries removed, they told me that my intestines were glued together with my ovaries and my scar tissue.  They also told me that this may also occur again.  I was pain free for a few months after the surgery.  But, now the pain has returned and I don't know what to do.  I live in Japan on a military base.   I feel like I am falling apart.  I don't like to take pain medication and had a hard time when using it before my surgery.    I could really use some advise.

Diana  

[Robin11461]

Mary, I am SO glad I found this website. I am exhausted from pain and strong narcotics and desperate. My pain started in the Fall of 1992. I was in Germany at the time, and fell prey to many military surgeons cut happy. Finally found a very good doc-9th doc-that was able to help me. Had a partial hysterectomy. Was pain free for 5 years-until the endometriosis(forgot to say that's what caused all my initial problems)returned and destroyed my ovaries. My hysterectomy was in 1994 and by 1999 and back in the States, the pain returned full throttle. Anyone who has experienced this type of pain knows what I am saying, there is nothing like this type of pain. You know what it is immediately. So, I had surgery in 2000 to remove my ovaries-they we enlarged and destroyed by endometriosis and adhesions. My doctor told me as they were wheeling me into surgery "You're trading one set of problems for another" Wow! was he ever right. I experienced surgical menopause-the absolute worst menopause ever. And still I am not right with hormone replacement therapy. It is a daily struggle of hot flashes, mood swings...and of course terrible pain-still. Yes, I am still in pain. Removing my ovaries did not stop the pain. The doc said he found alot of adhesions while removing my ovaries, and he zapped them all with a laser. I'm so sick of this....I'm now 49 and have to live on Norco or Percocet. I can't make it through one single day without it. I simply cannot stand up or walk if I don't take pain meds. It's horrible. I finally saw the head of Gyn at Chapel Hill Med Center-one of the best in the entire country-and he told me I suffer from Deep Chronic Pelvic Pain Syndrome-and that I would have this pain for the rest of my life. That I needed to make peace with it, there was no cure. Yes, he said, they could go in again and blast the adhesions, but just by simply doing this, it causes more adhesions, because it is surgery. I am so miserable. I am currently under the care of a pain management specialist, who manages my narcotics and muscle relaxers. So, I start my morning with 30 mg. of Norco....simply to be able to walk. To best describe my pain, I would say that it is a bloated feeling in my pelvic area, like a balloon is slowly being inflated. It aches and burns....and feels like I need to push in with my hand, it feels like everything is going to just fall out of me. The pain radiates down into my vaginal area, across my hips, sometimes going into my back. I cannot I have had to live 10 years like this. I can't imagine another 10...and I am finally, very unfortunately, at the point where the Norco is not strong enough anymore. My next visit next week with the doc I am going to have to discuss stronger pain medicine with him. I have dreaded this day, but it has arrived. If I live out my life according to my genetics, I am only 1/2 way through my life. I should live to be 100 as so many of my female relatives have. My mother just passed away at 98. So here I sit, with this horrible problem. And how it  hampers my life. It's such a curse. I am just TIRED of this! I have been the physical therapy route too, didn't help at all. I've tried many things, but the docs tell me that I just have to accept it. There is no cure. I can't work because of it and the strong medicines. Fortunately I have an independent income and health insurance, or I'd really be screwed. I tried to work 2 years ago, and managed almost 6 months. And my meds had to be bumped up then, because I was in a job where I sat all day long and the blood was pooling in my pelvic area, I could feel it-the increased pressure, the bloated expanding balloon feeling. As I write this, I am laying on my sofa with a heating pad. I've already taken 4 Norco's, 800 mg. Ibuprofen and my muscle relaxers. Still NO relief. Granted it was 4 hours ago, but it's definitely time for another 4 Norcos if I am going to be able to stand up and walk today. If you have ANY adivce, if you can help me AT ALL, PLEASE respond. ANYONE out there that has any advice to offer me, please send it. My email is: ***@****
I look forward to hearing from anyone. I need help, and I need it now. And I'm definitely going to get the ball and start the body rolling. It sure won't hurt anything. I'm game for almost anything, except cutting the sacral nerve-which was actually suggested to me. Doing that would put me in diapers for the rest of my life. I chose the Narcotics over the diaper.
Thanks to all,
Robin

[Jane08]

I had a laparoscopic appendectomy for a ruptured appendix two months ago. I began to get better but have been beset with colicky pain around the surgery area and the upper abdominal area. These days I can't do much except for sitting and working on my chair in my home office for maybe 3-5 hours a day. I am on pain medicine everyday and mostly, I stay in bed .

My surgeon wanted me to have a number of tests done before seeing him again. I had an X-ray, Ultra sound, CT scan, and MRI. The tests showed that I have problems with fibroids in my uterus, a blocked fallopian tube and enlarged ovary, but they concluded that this is not the main or "real" problem. Two gynecologists advised that I should go back to my original surgeon and have him check for scarring and adhesions before doing anything with my uterus.

Two days ago, I went back to see my surgeon who graduated from Harvard Med school.  He said that if he does a laparoscopic exam, there's only a 33% chance that he will find something, and that I might need to live with this pain all my life.

I am a sporty person, I love outdoor activities, and I planned to take Ju-Jit-Su class in the beginning of January.

I am so sad about my doctor's answers, I am getting tired with my life and my body is getting weaker everyday. I will try your ball exercise idea before I go back for a second surgery. I hope my life will have future with in spite of the scarring and adhesions.

[Mary 53]

Responding to the woman who wrote about pain 4 weeks after having a hysterectomy. Hope no one minds that I bumped up this thread, but I was unable to extract the information without getting all of the medical references that are now underlined....a huge list came up for almost all of the words when I tried to copy the info so I could copy what I needed and disregard the rest to answer this new question from the other poster.  

I am still trying to get used to the new style on this forum...I can see how the underlining may be helpful but I must admit I am feeling overwhelmed when reading the posts. My eyes seem to go just to the underlining so it will take some getting used to. Anyone else having problems getting used to this? Sorry...did not mean to get off task here.

Mary

[Mary 53]

Hi Diana,

Thanks so much for letting me know that you saw this post. That was very kind of you. Let me know if you have problems finding the website or if you have questions about what I wrote. It is interesting looking at the site. Another site that I found last year but have not visited in awhile is a website directly related to adhesions called "The adhesion society" if I am not mistaken.


Well, I will check back now and then as I know these posts get buried quickly on this forum. If you are ever looking for me...(That sounds strange, I know...but for anyone who has gone through the pain of adhesions...well, we know how desparate for help one can get!) and I miss a post here, you can post on the Ovarian Cancer Patient to Patient forum. I have posted there for years and frequently check that site.

Good luck, Diana.

Mary

[dlherranen]

Thank you so much for this information.  I am going to try this.  Right now, anything sounds good.  I will have to find a ball first.  I am going to bed right now cause it's after midnight where I am, but tomorrow I will visit this website of Bodylogic.com.  I'm so tired of being in pain.  And I don't want to be on pain meds all the time anymore.  I really appreciate all the advise.  I will be back tomorrow.  

Thanks, again!

[Mary 53]

HI Diana, sorry for a little repetition near the end...just more about the doctor's comments after my lap last summer.

My dx of adhesions were confirmed during a colonoscopy when the doctor stopped the procedure saying, "Man, do you ever have surgical adhesions. They are collapsing your colon. Do you want me to stop the colonoscopy"?  The colonoscopy would not have been painful otherwise, but during this thing, back in 2001, the tool or scope used for the colonoscopy literally "Snapped" open the adhesions...OUCH!!!!!   I actually got some relief from the pain and the IBS which it caused. But, the thought of going in every 6 months, which was the offer to help keep the adhesions from forming over the colon, or collapsing it, was too much to bear. Thank goodness for my weight training teacher who was working at this little community center. She gave me my life back!  *************************************************************************************************************

HERE IS THE INFO:

The woman who taught me how to do this is an Exercise Instructor. She said that one reason she wanted to learn this was so that she could teach elderly people how to do it since some of our insides "glue together" as we age and that this releases much of the gluing because of all the blood, thus oxygen, it brings to the area.

In my case, I had a total hysterectomy in 2000 and suffered from surgical adhesions for about a year. The pain from the adhesions started about three months post-op. This technique seems to break up the adhesions and it worked for me.  I figured that if it worked for adhesions that formed naturally in our body, it should work for surgical adhesions. It did!

It is truly amazing. I noticed a HUGE difference immediately. When I sat up after the fist time I did this (about a 15 min. session) I could feel a "FLOOD" or a Rush of blood or something! going to that area. After having pain about 40 times an HOUR for over a year and a half after my surgery, my pain decreased to only about 10 times a DAY for a few seconds at a time. I did this procedure again about a week after the first one and that gave me even more relief. I think it was about four months til I had to do it again. Now I do it about once a year, if that. I have been virtually pain free, ,aside from a dull ache now and then, from adhesions since learning this technique.

The idea is you want to get the blood to the bone, not just the muscle....so it floods the tendons and gets lots of oxygen there to start healing and breaking up the adhesions.

**My instructor told me to think of a steak and how the tendon is sort of splotchy with blood where it is attached to the bone...well, you want to get the blood totally to the bone so as to really break things up. Regular massage is not "deep" enough.


The ball I used measures 16 inches. Again, though, I did not get the ball thru the website (Bodylogic dot com) but you can go there and check it out if you want. The website is all about body rolling and about the woman (her name is Yumana and I think she is from Russia) who developed the technique. Anyway, I got just an ordinary ball in a toy section at Target and it looked similar to the one the instructor had used. The ball I have has a picture of Blues Clues on it! Hey, it works. It probably is bigger than the ones they recommend, but, if you think about it, it is squishy to the point where once all my weight is on it, it probably shrinks down to about ten inches. And, I just put my "front" onto the ball for the pelvic pain and not my back.

-------------------------------------
Here is how I did it...leaning my body wt. into it, literally placing the ball underneath me and "rolling" on it...slowly.

I would lay on the pubic bone and then take about four minutes or so to SLOWLY (while remembering to take deep breaths now and then) work my way out to the right side where the ovary once was on that side. After you get there, go back slowly to the pubic bone...breathe deeply. When you get to the pubic bone again, then go to the other side, following a path, if you will, of where you imagine the falopian tube once was. So, you are rolling in something like a "V" formation. After you get to the left side where the ovary once was, then go back to the pubic bone...and, you are done. But, take about 15 minutes to do the whole procedure.

**********************Udated information....August 2007***********************

At first I did this technique twice in two weeks. Then I had to do it about once every two months or so...then about once a year. When my doctor did the laparscopy on me in June,07 (hoping to find adhesions so we could figure out why I have been having pain, which they now think is from a ruptured disk) he was shocked at how "clean" my insides were. He said he actually consulted another doctor about it. He said that you always see evidence of any type of abdominal surgery no matter how invasive the surgery. And, since I had such a huge surgery back in 2000, he expected to see some type of adhesion debries...but did not see anything. A great testimonial to Body rolling!


I always suggest checking with the doctor. I am not a doctor, just a person who was miserable from the pain of adhesions.

It does hurt a little while you are doing it, that is for sure, since you are initially pressing on the pubic bone with all the weight you can manage to put on the ball. And then you roll slowly to where the ovaries once were and yes, it is not the most pleasant feeling, but it is a "good hurt" if you know what I mean.

Someone I know said her daughter uses a Medicine ball to do this procedure, but not the hard kind of course. She uses the type of Medicine ball that is "squishy." I have not tried that.

Take care and good luck!

[Mary 53]

I am so glad I checked this site. I normally post only on the Ovarian Cancer site, but just kind of hanging around Medhelp this evening.

I will post my Adhesion help information. I am not a doctor....just for the record, but I found a technique from my exercise instructor believe it or not. I had my complete hysterectomy in 2000 and thought that I would die from the pain from the adhesions which started just four months later and got worse.

I had surgery ( a lap) last June while trying to get a diagnosis for some groin pain I had had for months. Turns out it was a ruptured disc that the Orthopedic doc missed months prior...but none-the-less I went ahead with this lap since the doc and I figured that an adhesion had reappeared and was causing all the pain. The doctor said that after the surgery he consulted with a specialist about me since in all his years (he is 58) of doing surgeries (he is an OB/GYN) he'd never seen anything like what he saw when he was scoping around in my abdomin. NO debris...nothing. NOTHING. He said he has never experienced that before. You always see SOMETHING when doing this surgery on someone who'd had a previous abdominal surgery. SO..I credit my "body rolling" technique for sure. It is a very very deep massage aided by the use of a small ball. But, let me find the info on my hard drive and I will post it. Hang in there!

Mary

[jml1986]

I just had my hysterectomy in July so I do not know the answer to your question but I read eagerly so I have some idea if it would happen to me.

[AnnieBrooke]

I had adhesions from an appendicitis and they sure do hurt.  Had two surgeries to remove the adhesions.  The second one, the kept me in the hospital for 2 days full of something internally like Karo syrup to keep the parts from gluing themselves back to each other where they cut out the adhesions.  (It then got absorbed, no further surgery was needed to get it to go away.)  It worked!  Never an adhesion-based pain again (so far, and it has been over a decade.)  See if your doctor recognizes what this stuff is, it is designed to keep fresh surgical scars from sticking together.  Good luck!