Abdominal Adhesions & Severe Pain

Hello AIRPLANE,

First, yes, the bacterial test, did it last week and as NORMAL, it came out NORMAL, negative and I really did think when my NEW GI Dr told me to do this test, I thought that makes sense and could be why I have lack of appetite, nausea, gas & odor, but to no avail. ANOTHER DEAD END!! So that's what lead me to the surgeon. GI Dr was at a loss referred me out and here goes the endless loop!!

You make a good point about that it appears that the ONLY way they will do something is if you are passed out and in the hospital w/an obstruction and God forbide this could kill you. Waiting for the intestines to perforate. Well I'm not waiting for that. That's scares the living daylight out of me that, that will happen one day. I know of a girl who that just happened to, a friend of a friend, THANK GOD she was at her job when she passed out and people were around. They found an obstruction thru a GI test and open her up to find ALLOT of adhesions. They cleaned her up, put her stuff back in place and she is all good now. So yes, part of the problem is, you REALLY need an obstruction to show up on ANY of these tests and that's not happening for me.

Yes, I agree I would have thought that my local GI Dr would have referred me out after last year's 2nd colonoscopy when he identified dense adhesions but again to no avail. And in 2009 I went to him when I started this complaining again about the pain. He did my 1st colonoscopy at 50, couldn't complete it, so sent me for a lower GI test, HORRIBLE test, but it didn't show any masses BUT it did show that there are still "metallic surgical sutures" left in my lower right hand pelvic area where my pain originates from BUT no one ever told me this and I just saw this report last week for the 1st time.

I'm not sure if the metallic sutures mean anything BUT the way my head is working....I'm thinking if there are still metallic sutures in there and the adhesions are wrapped around that area...WELL, maybe why cause so much pain. Yes, self-diagnosing once again. I have too, no one else will.

So this is ALL information and discussion for the surgeon this week and the GYN adhesion Dr. I will keep you informed.

AIRPLANE, Again I'm sorry you sound like you are in an endless loop as well but I'm thinking maybe you should be at a surgeon too instead of your regular Dr. Just a thought but I know it's sounds like you have visited that block already too. Please be well!

Peace & Love!!!!
AP

Hello there,
Well I told all my Hyster Sister friends that I would keep you informed of my progress. I will "TRY" to make this brief..LOL. It turns out I have a "congenital bowel defect" in my large bowels/colon along w/having "adhesions" wrapping around this congenital deformity which is causing ALLOT of pain. Yes, I'm still in pain 2 months later. I can tell that my large bowels look like nothing you have ever seen before. Ugh!!

The congenital bowel defect is from being a DES baby. It was a drug that our mother's took in the 1950's to help them carry FULL term. It turns out this drug caused ALLOT of reproductive & birth defects in the female offspring’s. That's me!!

As I mentioned before, I have been seeing a local surgeon in my area at one of our renown hospital. Needless to say, he was AMAZED at how my bowels looked after doing a barium-enema test (which we was NO fun), anyway he suggested “surgery” BUT w/ reluctance. He said there is ALLOT of risks w/this surgery he explained how he would start it doing a laparoscopy and hopefully ending it that way BUT he said there is a LARGE chance w/everything going on in my abdominal-pelvic area (deformity & adhesions) that he would have to open me up which “of course” could cause MORE adhesions and not to mention ALLOT of other risks and problems that the surgery could cause.

So with all of this said, I’m trying to do whatever I can to “prevent surgery”. I have been researching and researching and found this Physical Therapy Clinic in the FL area. I don’t want to name names b/c I believe that its not allowed on this site/posts BUT I would welcome ANYONE that would like to PM me to find out more and I would like to ask ANYONE out there if they ever heard of this Clinic and know anything about them and their success rates. It sounds like a “perfect fit” for me, so I’m hoping and praying it is. If not, then surgery is my next step which I’m not REAL happy about.

I will say that this Clinic offers a physical therapy technique that is “suppose” to dissolve adhesions from your designated areas. I have been researching and researching and like “anything” especially an “alternative methods”, there are always pros & cons. It was developed by a physical therapist woman who suffered for a long time w/abdominal-pelvic adhesions and their success rate is suppose to be very high.

So, like I said, if this sounds familiar to anyone and may know of whom I speak, I welcome ANY and ALL feedback. I am booked to go in July and just hoping this is not a “too good to be true” thing…I just want SOME relief and SOMEWHAT of a normal life.

Thanks for listening.

Your Hyster Sister,
AP

Hello my fellow Hyster Sisters,

I believe some of you have seen my posts regarding my 13 year road of post hysterectomy surgical adhesions & pain! Well, I found the answer. A non-invasive physical therapy treatment Clinic in FL. I know I can't post names, so if you would like any additional inforamtion on the site, please feel free to PM me. I will be HAPPY to share.

What I can tell you is that this Clinic consists of “professional physical therapists” who have studied & been trained in advanced manual physical therapy techniques. They have developed and researched new protocols to restore patient’s bodies, like myself, to a state of increased balance, mobility, and function. Along with these increases, patients generally note greatly reduced or totally eliminated pain by the end of the five days of treatment, which I can report has “definitely” worked for me in eliminating my pain and giving me back my life & body.

I can tell you "IT WORKS". I am 90% better and FREE of PAIN!! YIPPPPPPPPPEEEEEEEEEEEE!!! I say 90% b/c I still have some work to do as far as strengthening my abdominal-pelvic area and doing allot of stretches BUT that will come over time. I've been in SO MUCH PAIN lately that I was unable to work out at all, so now that I'm FREE of pain and feel better, I can start to work out again & I'm sure I will be able to tone up those lose muscles once again.

Ok, just had to share b/c for me, it's GOOD NEWS!! It's been a long "Road to Travel" & I just got off that road. THANK the LORD!!!

To all you Hyster Sisters out there that are on the same road and suffering from the same drawn out pain & life-less feeling everyday, please listen, there is HOPE!! I found it.

Be well!

To a HAPPY & HEALTHIER LIFE!!

Signed,
a NEW AP

AP-

I'm really glad that this physical therapy seems to be working so well. I'm pretty sure that I know what the name of the place is. I think it's the same one who used to have a location in Iowa that has now moved to Indiana, and they also had locations in Florida and California. Their website has always said that they were hoping to open more locations. There was also a book about it a few years ago. I think that their main focus is treating adhesions to help women who are trying to conceive but I guess they treat everyone, including men. I took the book with me on one of my visits to a medically-oriented massage therapist that I go to. She seemed suspicious of the success claims of the therapy but of course the best info would come from knowing a patient who has personally tried it. She also thought that the cost was too high.

Back when they had the Iowa location (which would have been the closest one for me) I used to think about contacting them. What stopped me was the high cost, and it was far away enough where I would have had to also pay for lodging, and also the fact that none of the numerous doctors I've been to over the years will consider adhesions as a culprit. I generally get the impression that you pretty much need to have some type of acknowledgment from a doctor that you have adhesions in order to get consideration for most treatments whether they are traditional or alternative- especially if you might hope to get any reimbursement from insurance. Or even if you wanted to receive treatment outside of the U.S. which I have read of some patients doing because they got tired of trying to find help here.

I recently tried going again to a well-known clinic for evaluation. This time I tried the gastro route instead of the urogyncologic route which was a total waste of time a few years ago- that visit probably lasted less than 5 minutes and the doctor wasn't even going to do a pelvic exam which he did do with prodding from me but he barely went through the motion of it and it was over. Anyway, this time I had a radiologic transit test which was mostly normal except that my small bowel transit time was delayed. To me, that might suggest SIBO and they agreed to schedule me for a breath test in the next couple of weeks after I asked about this. The doctor's theory was that my diarrhea was really constipating as diarrhea but of course that is only her theory. I'm also going to have an EMG in the neurology department since I also have sciatica on the left side where all my main problems seem to be. I keep hoping that maybe in some roundabout way I can get someone to consider adhesions as a culprit. Obviously my symptoms, medical history/surgeries and physical therapists' opinions aren't enough.

They also once again recommended their own 2-week physical therapy course for pelvic floor dysfunction. I was going to try it a few years ago until I found out how much it cost and my insurance company wouldn't cover it because it was coded as biofeedback. If it didn't work I would have been out several thousand dollars in addition to lodging costs. I visited with the therapist who gave me the codes so I could check for insurance coverage- she said that insurance was getting better at covering it so I will have to check. There is a waiting list of 3-6 months so if I end up doing it it will probably have to be next year because it is a bit of a drive and I wouldn't want to have to do it in the winter, even if I ended up staying there and I'd want to come home on weekends at least. Once I have my EMG and breath testing and speak to the doctor I'll probably make a decision about the therapy then. I would think that they'd be familiar with adhesions as I'm sure they could cause pelvic floor dysfunction as well. I did mention my visits with previous physical therapists who all agreed I had a lot of pretty tight adhesions but the doctor dismissed this- saying that I couldn't know I had adhesions without a laparoscopy and that was the end of that. Although I could have told her that, according to the report from having my right adrenal gland removed at their clinic a few years ago, it stated that 'a small amount of adhesions were seen' that that should mean something- and I assume that not my whole abdomen/pelvis was visible- especially the left side. But I have learned not to push it- if a doctor doesn't want to talk about adhesions you can't do anything to change that.

So we'll see. For now I at least have Tramadol to take which helps a lot. It doesn't fix everything but pain reief is important- I can't take Nsaids like Ibuprofen or Naproxen because they make my gastro issues worse.

Again, it's great to hear that the physical therapy has worked so well for you. I've been hoping to hear some first-hand accounts from someone who has tried it. Yours is the first I've seen, assuming it is the same place that I am thinking of. It would be nice if they could open more locations and if insurance would start covering it! I'd definitely try it then too.

Hello Airplane,

First, thanks, YES, I'm thrilled at the results. I am FINALLY out of pain. I'm hearing what you are saying about the success rates & claims & Yes, I took a chance. It was the "great unknown" BUT I had to take the chance and I did allot of research about the place & they appeared to have gotten "rave" reviews. I can tell you that they ARE NOT smoke & mirrors. The claims they make & their outcomes are REAL. I'm living proof.

As I said above, I had to take the chance or my next step would have been another surgery and we ALL know how that ends & I would be in the same situation I am now. My surgeon said he could start my surgery as a laporoscopy to help minimize the adhesions BUT if he niks something and something goes wrong then he would have to open me up again and I'm right back where I started. Also my surgeon said he would give me a 60 - 40% that the pain would go away & that I would be better. That was not a good enough % for me. He was happy to hear that I was trying another avenue before surgery. I told him if this didn't work and I was still in pain by the fall, I would re-consider surgery BUT I don't have to do that now.

So I took the chance & I do agree it is expensive but again WORTH every penny & much cheaper then surgery. Now grant it surgery would have been covered by insurance but it still would have been way more expensive then this Clinic. I am currently fighting and appealing w/my insurance Co to have them pay for this in full or partially b/c I'm saving them money in the long run. And from my understanding there are some insurance Co's now that will cover some or most of this treatment. It's worth a try. Call them ahead of time to see.

Believe me, we are not in the greatest financial situations. I've been out of work for over a year now & with no success of obtaining a full time job but currently working 2 part time jobs to help our expenses. Thank God my husband is still working and so far so good. Thank God! But I can tell you that my husband is THRILLED & happy to have his wife back, so to him again, worth every penny. He has been thru the last 13 years of pain w/me & he was feeling helpless that he couldn't do anything & now he did & I THANK him greatly for it.

As for the conventional Dr's, I learned thru this experience that you will NEVER be able to have them understand adhesions EVER! They will tell you that adhesions "do not cause pain", which maybe a true statement BUT when adhesions are pulling on parts of your body like your hips, bladder, spine, etc....YES, that can cause pain.

I was lucky my surgeon agreed with me whole heartedly that I had post hysterectomy surgical adhesions even when NONE of the tests identified them but he knew from my last test (barium enema) that should some VERY twisted up Large Bowels which he said is part of a congenital birth defect along with adhesions pulling on the intestines even though he couldn't see them, he still knew they were there.

I forgot to answer to you that YES, I think the Clinic that you are thinking of is the same one. Not sure about the Iowa location but yes on the other locations.

Well all I can do is share my story & hope that it would help someone(s) & if able to do this, it would be great. I know everyone's situation is different but to me ALL I've been thru, thru these years & I FINALLY feel like a HUMAN being again, again SO WORTH IT too and NO MORE surgery. YIPPEEEE!! This was the answer for me. It may not be the answer for everyone, but it was for me.

I wish you the BEST, it still sounds like you are also stuck in your loop & I'm sorry for that.

I wish ALL my Hyster Sisters the best who again have & are still traveling this road. Believe me I know, been on this road & as I said before, I'm glad I took another turn!

Be safe & well,
AP

it is truly amazing to see so many women struggling to feel well...it's is exhausting and tiresome to know more then the dr.'s seem to know and try to educate them to our expertise...because we spend hours and hours trying to find answers to our issues!
I too deal with adhesions from endometriosis (and surgery) I had surgery last June - 8 years after my hysterectomy/bso. I had endometriosis as well as frozen pelvis. The Dr. cleaned me up and I felt good for about 7 months, but then started to struggle again...so I see him again in Oct. I will be having surgery again I am sure...I will either have it with this same Dr. or I have been chatting with a Dr. (endo specialist uro/gynoncologist in another state who will do it if I don't feel comfortable with my AZ dr. but if I can have it in AZ it would be easier then going clear to another state. Will also be cheaper, but I will do what I have to in order to feel well as we only get one life on this earth and I am tired of living on the couch! I am hoping this will be my last surgery, but I had hoped that with the last one. I also have the prolapse issues(rectocele, cystocele, Occult rectal intecesseption), so I am hoping to get adhesions, prolapse and endo (if it's in there this time) all fixed in one surgery...I too have been to many Dr. who actually say they can't help me...so I now only see specialists as I don't like them wasting my time and money...I have given so much $$ to dr.'s trying to find answers. The specialist do seem to listen a bit better and are willing to go in and look around fixing what they find. The only problem with the specialists is they sometimes are far away which is a big challenge! I will be following this post and hope all of us can find the help we need and soon!
One more thing...I do get colon hydrotherapy every other week because of not being able to have bm's other wish I can't eat and I still spend alot of time juicing because my body can't handle fiber...gets stuck in my digestive tract...so the colon hydrotherapy to clean out and acupunture to keep the pain somewhat manageble!

I am so grateful to find this site! I have suffered from adhesions for the past 20 years. I have had so many laporoscopies I've lost count. I experienced severe pain for the past 20 years and it took a small bowel obstruction with peritonitis and my appendix bursting for any doctor to finally take me seriously. That was in 1997. I had to have emergency surgery and had 24 inches of dead intestine removed........all due to the severe adhesions in my abdomen. I almost lost my life from this.
I'm furious to see that dr's are still dismissing this problem as "not a big deal" or "its all in your head" or "adhesions don't cause pain". I have had 6 surgeries since 1997 to remove more intestine and clean up the mess that adhesions are making of my insides. Its a vicious cycle...the more surgery you have the more adhesions you get, which leads to excruciating pain, which in time warrants adhesion removal. My drs have tried every latest and greatest adhesion barriers that come out with little to no success on slowing the growth of more adhesions.
I am fortunate that with my history, I finally found an internist who takes me serious, and is willing to help manage my pain now. It took me almost losing my life for any of my past drs to help. I fired every one of them after that happened lol.

My heart goes out to all of you who are still trying to find such a dr. Or surgeon who is willing to take the time and energy to help.

I am scheduled for yet another surgery this Thursday, aug 23, to remove more adhesions and fix a rectocele, cystocele, and mid urethral sling. I am scared to death of what they will find this time. They are going to try robotic assisted laporoscopy, but are doubtful they can manuever around, so I will most likely wake up with yet another massive incision from my pubic bone to my diaphram.
Best of luck and warm hugs to all of you who are traving down this painful and frustrating road! God bless you!