recurring abdominal adhesions
Does anyone else out there have problems with abdominal or pelvic adhesions? I have had several surgeries and have constant pain. Its really affected my life in a negative way. I have always been a very optimistic person, but I am feeling very overwelmed after my last surgery.
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Yes, I can relate. I believe I have been dealing with lots of gastro issues- involving both abdominal and pelvic areas- for close to 28 years now, and I think the culprit is adhesions.. My abdomen and pelvis feel totally frozen! Forget kegels- nothing moves! Although, unlike in your case, I have never found a physician who was even willing to discuss the issue of adhesions, nevermind attempt to operate on them. My pain and problems have always been chalked up to IBS which of course is totally useless. I've done everything diet-wise, been to physical and massage therapists as was recommended, but no relief. I feel as though I'm being strangulated from my upper abdomen to my pelvis. My symptoms cause me great grief on-the-job and has meant virtually no personal/social life all this time.
One argument I often read about regarding adhesions is that they do not show up on imaging tests and it takes more than mere suspicion that one has adhesions to justify doing an exploratory lap to find them. I recently saw on a website called EndoTimes about one woman whose adhesions were visible on a barium swallow test. I also wonder if a barium enema would show them. If this is true, it seems odd that nobody noticed this before or were we not supposed to know we had adhesions? It is definitely not a popular topic but if you google it there is tons of info describing the pain/problems they can cause as well as various attempts to come up with an effective adhesion barrier so you know that those who say that adhesions don't cause pain/problems are either lying to you or just don't want to deal with them.
I also have read about adhesions being visible on what is called a Functional Cine MRI which is being used in Europe but I have not found any info on its use for finding adhesions in the U.S.
The physical therapists, as well as a medically-oriented massage therapist that I now go to all have said that I have a lot of very tight adhesions. I was able to have an exploratory lap about 20 years ago where they said they found nothing but recommended a hysterectomy due to fibroids which I didn't want at the time. But what was interesting was that I got 2 weeks of relief from my symptoms- my abdomen shrunk in half, but then everything slowly started tightening up again and I was back where I was before. I didn't know about adhesions back then but now it is the only explanation for that wonderful but brief reprieve from my horrible symptoms. The doctors who did the lap said nothing about adhesions and could give me no reason for my brief improvement. Supposedly it was 'psychological' that I just THOUGHT I was better but believe me the change in my symptoms and appearance was radical!
I finally had a vaginal hysterectomy about 12 years ago which did nothing to help and I don't think the surgeon even looked for adhesions as he was several hours late due to having to delivery a baby and I have actually had more pelvic floor problems ever since, like symptoms indicating a fistula and a constant infected feeling on my left pelvic side and it has a terrible odor but when I tried to get help I was treated like I was nuts.
I'm trying to find a gastro who will try and find a cause for my problems and not throw me under the IBS bus again. I really don't know where to begin. I tried going to a colon-rectal doc in my area for the possible abscess/fistula in my sigmoid area but he only spent 5 rushed minutes with me and left. Obviously not interested! When I try googling for adhesion doctors I always come up empty.
In your case, once you had adhesions removed, were you given any advice as to how to try and prevent their return? Like going to a massage therapist? I've also wondered whether blood-thinners would help or even certain anti-biotics to prevent infection. Also, were any barriers used? And were your adhesions just lysed or cut? I have read that while lysing is safer, cutting and removing what they can is more effective. I have also read about 2nd and even 3rd look laparoscopy where, a week or so after the initial surgery, they go back in and remove any new adhesions that have began to form. Supposedly, at this early stage, the newer adhesions are softer and easier to remove, leaving less damage and making it less likely that new ones will form or if they do, they are less likely to cause issues. But I'm sure that insurance companies would not like this to be SOP as from what I've read, if they pay anything at all it is not much which I imagine doesn't make adhesiolysis a popular procedure for surgeons.
I have read of some patients leaving the U.S. for help with adhesions. A place in Germany comes up a lot. I wish I had the nerve to go there myself but then don't think I should have to. If I could find the right doctor, I'd even be willing to discuss paying so much $$$ out-of-pocket if needed but like Dr. Oz said on one of his shows, doctors don't like to talk about money but they really should be willing.
I can relate! I have already had 5 surgeries to remove. But they keep coming back and no one knows why. Mine is attached to my colon then attached to the side of my body and causes so much pain. I have to constantly take pain pills. Does anyone remember reading about a Dr. In New York that was doing research on adhesions?
I realize that this is an old thread however, I am not finding very much online that is more than a general blanket answer to my problems. IBS tends to be the default for my providers as well. I have had a history of pelvic trauma from child-hood sexual abuse. At age 12 I had an appendectomy after many years of tummy problems but I still had abdominal pains. I had an induced vaginal delivery of a healthy 10 pound baby in 1994 but the doctor told me that I had no other choice but to lay on my back for 12 hours after the IV Pitocin was administered. I was not able to move as I wanted during the labor and delivery. In the spring of 1997 I went to the doctor doubled over in pain and discovered that I had 3 sexually transmitted infections which resulted in severe Pelvic Inflammatory Disease and I was put onto IV anibiotics immediately. In 1999 I lost a baby at 17&1/2 weeks of pregnancy, my water broke and they drugged me up to perform a D&C, they told me that the placenta had detached from the lining of the uterus as a result of the severe scarring that the PID caused. In 2003 I was about to undergo surgery for my gallbladder removal but just before he was to put me under the anesthesiologist asked me how far along I was. I told him that I was not pregnant but my tummy was bloated from the digestive issues. He informed the doctor that I had not idea that the pre-surgical bloodwork was positive for pregnancy. At first he was attached just over the cervix but thank God my uterus stretched upward and out of the way so that he was no longer in placenta previa position. My OB said that he was a miracle baby who happened to attach to the only smooth area of my uterine wall. That pregnancy was a bit rough and then they went ahead and took him via C-section 3 weeks early because I could no longer walk and was having to hold my belly up with my hands in order to move, I carried him all out in front where you could see the outline of his body parts and my belly extended well past my nees when I sat. Although it was pre-scheduled to prevent him from gaining any more weight than 12 & 1/2 pounds, the C-section was rushed to accommodate the attending physician's personal schedule. In 2006, my ex-husband asked me to pick up my school books off of the floor after we had an argument,when I reached down to get on of the textbooks, he kicked me from a sitting position in the coxyx area which launched me across the room until I hit the furniture. He is 6'7 and his long legs had a lot of force, I could not sit at all for several weeks and using the restroom was excruciating, to this day it causes discomfort when I lay or sit on the area. Due to lack of insurance after my husband was fired from his job and the fact that since I was working 3 part time jobs, I was uninsured. Even as a new single mother, I could not purchase my own insurance due to pre-existing conditions and therefore the gallbladder remained for an additional 8 years. The surgeon said that in his 20+ years of doing the procedure regularly, he had never seen such a sclerotic gallbladder surrounded by severe infection. In fact it took him about twice as long to do the surgery since he had to carefully "peel" my diseased gallbladder from my liver where it had adhered. My husband was abusive in every way including sexually and physically (from the age of 16 until I finally left him at the age of 32). My abdominal pain has always plagued me and not all of my issues were relieved from the removal of my gallbladder. I no longer had the kinds of attacks that had me doubled over on the floor almost every night which was a Godsend however, to this day I still have severe bloating and pains. I have not been sexually active since I divorced my husband but when we were together intercourse was always very painful. My PMS is actually severe PMDD and I had an endometrial ablation because I bled so much that I was anemic. My GYN said that he could not remove my uterine fibroids though because they are in the uterine walls on the outside. He told me to wait until menopause and I could have a complete hysterectomy at that time to expect full relief of my symptoms. My entire abdomen is always tender to the touch and swells up so huge that people think I am in my last trimester of pregnancy. Maternity clothes are the only thing that fit me, my legs and arms are skinny so I wear a medium in maternity but I absolutely cannot button a women's size 18 and even some 24Ws are difficult to button but the rest of the outfit is extremely loose. I have been on a dairy and meat free diet for years. I do not eat refined or packaged foods, they are all whole, natural, and about 80% of my diet is not cooked. I do not eat fast food or even most restraint foods. Being a low carb vegan is very difficult. I will eat salmon or tuna but normally all of my protein is plant based. I have had times where I was "overexcercising" according to my doctor, she said it was backfiring on me because I went to 5 am spin classes before I went home to wake up the kids and get ready for work. I hired a personal trainer for a year and she was shocked that my abdominal girth would not budge and I couldn't loose more than 4 pounds. She tried to do ab work with me but since my dihesis rectus was never repaired after my macrobirth, my muscles are so split and weak. My physical therapist that I was treating with due to an auto-accident told me that all pregnancies should have a PT consultation and that pregnant women should all be wearing support belts. She stated that women who have a C-Section should have PT to recover since it is a major surgery. I did loose almost 50 pounds on a medically supervised 6 month fast but my tummy was still large and I gained it all back in 4 weeks during our transition back to normal foods. My doctors do not understand why I bring up my big abdomen issue because they simply think I need to just lose weight. It is so devestaing to live like this but I just cannot get any testing, diagnosis, or treatment, options, I am so frustrated!!!
I know this is older thread but try to locate a gynecologist/oncologist physician. Abdominal pelvic adhesive disease closely related to endometriosis and cancer. Therefore, most doctor can relate to the discomfort, bloating, chronic pain of pelvic and abdomen and other symptoms. My gynecologist referred me to Dr Mack Barnes Gynecologist/Oncologist in Birmingham, AL. My last surgery was in 2010. He did advised there is no cure but he could try to improve quality of life...
Hey there! I know this is older thread but try to locate a gynecologist/oncologist physician. Abdominal pelvic adhesive disease closely related to endometriosis and cancer. Therefore, most doctor can relate to the discomfort, bloating, chronic pain of pelvic and abdomen and other symptoms. My gynecologist referred me to Dr Mack Barnes Gynecologist/Oncologist in Birmingham, AL. My last surgery was in 2010. He did advised there is no cure but he could try to improve quality of life...I had 4 abdominal/pelvic surgeries, basically my abdomen/pelvic was frozen and I couldn't feel any touching of that area. In your case I found this massage therapist that specialize in Rolfing that helped me a lot. I believe it was 12 session abt $75/session, and cost was all out of pocket, but it was worth it.
Were your adhesions due to surgery or from unknown causes?
Hi, @sunnshyne - just wanted to check in with you and see how things are going? You mentioned 4 abdominal/pelvic surgeries and that you could not feel any touch in that area prior. Did your surgeries help? You also mentioned a massage therapist and Rolfing bodywork. Wondering if you could share more about how that worked for you (e.g., less bloating, increased sensation)?
@smiles444 - I believe your question about whether the adhesions were due to surgery or from unknown causes was directed to @sunnshyne? I recognize you shared a little related to adhesions in another discussion on Connect, but wondering if you'd share a bit more here about your concerns?
@rdrdhap and @giza - How are you doing?
I asked the question know that this was an old post because I was diagnosed with abdominal wall pain in 2017. When I had an oophorectomy in November 2018, part of my small intestine was stuck to the abdominal wall. My doctor did not have an explanation as to how occurred. Could have been previous surgery or injury. Since the surgery in November, I now have pain in my side and the pain goes down my leg. I attempted to go for a walk today and had to turn around because of the pain. I am now wondering if scar tissue is developing where the ovary was removed.
@smiles444 I am so sorry for the frustration you must be feeling at this point. What has the doctor said about this most recent pain? I hope they have a solution to that without making another problem.
JK
Hi everyone, I am new here and wanted to reply because I’ve had over ten years of experience with our lovely friends, abdominal adhesions. I also noticed that some of you mentioned the Pelvic Pain Center in Birmingham, Al. This is near me and as of two weeks ago, an absolute godsend. I don’t know if I can help but I’m going to share my story and if nothing else, leave a recommendation for an amazing doctor for adhesions. In 2009, I was often checked out of school to be taken to the emergency room with severe pelvic pain. It hurt to sit. Sometimes my whole stomach burned and I felt like some parts were trying to pull down which was very painful. The ER couldn’t find anything on the MRI or the vaginal Ultrasound so I was always sent home. My Dad raised hell every time. They recommended I see a gynecologist so I did. For several months, I tried different birth drontrs to control my periods as my doctor suspected endometriosis. She put me on seasonique and it helped to an extent but the pain didn’t stop. I was told to go to a gastro because I would sometimes go two weeks without having a bowel movement. This would obviously be a reason for pain but it did not always account for it because sometimes I had good weeks. He told me to change my diet and do take colace, I did. No luck. He didn’t offer a colonoscopy because I was 17. Eventually my gynecologist agreed to do an exploratory laparoscopy in Feb of 2010 and found that the entire left abdominal sidewall was obstructed. My intestine attached to the sidewall, the ovary adhered to the intestine, and the Fallopian tube to the ovary. I had a lot of dense connective tissue but she did not diagnose me with endometriosis at this point. I had gotten pregnant while using birth control and condoms in September of 2011 and I lost the baby within 48 hours of finding out. I took multiple tests and all were positive, even used different brands. I’m not sure what happened. By this point, the gynecologist who had done my surgery had released me and wanted me to see a pelvic pain specialist because she felt there was nothing more she could do for me. I was an idiot and kept coming back because I didn’t want to drive 45 minutes further in bad traffic so I saw a didfeeent doctor there. The other doctor said there was nothing she could do for me since I had already passed the fetus. So that was that. I had went to see a gastro in between 2011 and 2016 and found that I have GERD and Gastroperesis which is stomach paralysis among other disorders. In 2016, I go back to the office with severe lain and a cyst is found. I follow up a month later and it had not burst on its own so surgery was scheduled. The cyst was found on my Fallopian tube and removed. I had some scar tissue but she said it wasn’t too bad. I had the mirena at the time and had gained like 50 pounds. She also managed to cut me vaginally with the speculum while removing instruments post surgery and didn’t tell me or my family. I discovered that when the stitches started falling out after I had suspected something die to the amount of pain I had been in. I called and asked wth happened and they said that I was bleeding a lot and had to be stitched and she’d tell me when I came in. Needless to say,after my follow up, I did not see her again. I finally got the guts to see her colleague although I’d never consider using that practice again had my friend not raved about this woman in 2018. I told her I was having severe pain and couldn’t wear tampons, etc. Thanks to that woman, I have a serious case of vaginismus. The severe pain from 2009 returned with a vengeance and I was determined to push through. I had my mirena our and lost 43 ish pounds. I refuse to have it put back in. My doctor tries to convince me that the pain is from the vaginismus but that doesn’t explain the 27 day period that an increased dosage of birth control can’t control. I bring my old post-op report because I am certain I have adhesions again. It hurts when I lift my arm like I’ve got a pulled muscle times 100. I get sharp pains when I move, and I don’t go to the bathroom for weeks no matter what I do. She agrees to the surgery. She orders no bowel prep and makes ONE incision in my belly button. She comes and tells me she didn’t find anything. Nah duh... you obviously didn’t look! She told me my bowel sure were very full and I needed to see a gastro doctor. I’m furious. This was a complete waste. She butchered my belly button and I have marks from the scope embedded in my skin two months later. She also did a bladder scope. I had clots the size of eggs in my urine and she wasn’t concerned. I went to the Er and I had ecoli all while she was telling me there was no way there was anything wrong with me because she performed the procedure perfectly. The gastro doctor does a colonoscopy and finds nothing. The first bowel prep didn’t work, at all. I finally get in to see Dr. Alex Childs at the pelvic pain center. I waited four months on this appointment and I had found him and scheduled it myself. Before my surgery, my doctor had told me she thought it was a great idea. I see him the next month and he checks my abdomen and is looking for the other incisions and I told him the only fresh one was the umbilical. He said he may be biased but there’s no way she could rule out any disease or make a diagnosis with one incision. He said he hated to take me back to surgery two months later but it was the only way to get to the bottom of this. He also did a pelvic exam and said my muscles not were in terrible shape and after the pt I’ve seen, they should be much better because she is wonderful. I agree to the surgery. He performs the exact procedures. The Lap, D&C, bladder scope, etc. I had a bladder lesion that she charged but did not remove and did not inform me of. Dr. Childs removed it and sent it to pathology. He ordered no bowel prep prior to the surgery as requested. This is a must if you think you have adhesions. They can’t see them if you don’t!!! Plus it’s too dangerous due to the risk of spilling bile into your abdomen so they can’t manipulate your sidewall and intestines if you don’t do the prep. He found bowel adhesions in multiple places. My left ovary was covered by bowel, and this showed on an ultrasound he ordered. Unfortunately the tech tortured me and pushed and prodded until she found it. I had bowel stuck to bowel. Bowel wrapped around my appendix, adhered to ovaries and Fallopian tubes, the bladder lesion, and a rectal lesion. There may be more but that’s all I can think of right now. Nobody took me seriously or would listen about my adhesions but Dr.Childs. He told me before the surgery that he thought it was the best choice over hormonal therapy. He told me e after that he was glad that he did the surgery. He saw me three or four times the day or surgery. I’ve never felt rushed or like my questions weren’t answered. I’ve been trying to get help for years and my family was so thankful for him. Not only did he help me, but he showed me proof of what was done and gave me photos and a dvd to take home. He sent several tissue samples to pathology. I’ve never had incisions look so nice from a surgery before. People come from out of state to see him. I paid over $1500 for the surgery so far and missed a semester of college but he’s worth it. If you are near Birmingham, Al and have any kind of pelvic pain, you will not find better than Dr. Childs. I’m sorry this is so long by the way. It’s a lot of history to pile into one post. I hope this helps someone.