How To Cope With Pain Blog header image 1


Abdominal Pain Due To Adhesions

April 15th, 2009 · 89 Comments

Today’s article is a story by a reader Aimee who experienced abdominal and pelvic pain for many years.  She hopes her story brings attention to adhesive diseases.  On Friday, I’ll provide more information about adhesive disease.

My name is Aimee A. and I am 45 years old.  I am the youngest of 3 children and have the most supportive family.  They are my best friends and my constant caregivers – emotionally & physically.  My husband Jim and I have been together since 1998 and have gone through the past 6 of my 7 surgeries for abdominal adhesive disease. We finally were able to get married in 2000, when I was feeling well enough, after multiple surgeries delayed our plans.  I’ve been a Gynecologic Oncology RN for the past 13 years and feel I have a true calling.  I have a strong passion for what I do and pride myself on being a true patient advocate.  I feel that all I have been through over the past 30 years allows me to care for my patients more effectively, and with not only sympathy but empathy.

My first abdominal surgery was in 1978 when I was 13 for unexplained weight loss, nausea/vomiting, and abdominal and pelvic pain.  At the time, “adhesions” or “Pelvic Adhesive Disease” was not mentioned.

The years following the surgery were wrought with innumerable doctor visits as I continued to have upper abdominal pain, bloating, nausea/vomiting, constipation, and weight loss.  I was treated for ulcers for the most part and given multiple pain medications to use when I had pain.  I was also regularly referred to psychiatrists, since no tests showed any cause for the pain.  Not only was I dealing with severe pain, but also with the medical community doubting my own assessment.  I had many more surgeries that found lots of adhesions, and tried to eliminate them.  [Note:  adhesions are scar-like connective tissue bands that form between tissues.  They often occur after surgery. -HtCwP]

It’s difficult to simply sum up the effect of 30 years of pain caused by abdomino-pelvic adhesive disease.  I never allowed pain to rule my life.  Not to say that it didn’t have an affect, but I found ways to cope.  I had to take varying pain medications on a regular basis to function – but function I did.  I never missed work unless I was hospitalized or recovering from surgery.  I never allowed it to interfere with life outside of work – except for life issues of marriage and having children.  I was advised that it would be very difficult for me to go through a pregnancy and ultimately didn’t have children.

With each surgery, I prayed it would be my last and that I would be able to live a “normal” life.  As I became educated about adhesive disease, I was aware that with each surgery, the problem could become worse.  This is because as adhesions are removed, more form.  This can cause a cycle of adhesions causing pain, but surgeries causing more adhesions and thus more pain.

What finally helped me was using a membrane product which works to prevent adhesions.  I’m still realizing the benefits today.  My advice to anyone who undergoes abdominal surgery is to ask the surgeon if they utilize an adhesion barrier in their practice.

My experience has helped make me the person I am today.  I’ve become a very knowledgeable and compassionate patient educator and advocate.

I appreciate Aimee telling her story and being an advocate for patients, not only with whom she works, but others by sharing her experiences.  On Friday, I’ll provide more information about adhesive disease.

This week’s Grand Rounds is at Pharmamotion.


Sign up for free delivery of How to Cope with Pain by email or RSS feed. If you liked this post, I'd appreciate your linking to it from your site or spreading the word through your favorite social media.

Tags: 1

89 responses so far ↓

  • Esther // Apr 15, 2009 at 4:06 pm

    I am so moved by your testimony. And you can have such an impact – others don’t have to suffer the way you have. Thank you.

  • Joan // Apr 15, 2009 at 8:56 pm

    There is an online support site called IAS (International Adhesion Society) where people who have been definitively diagnosed with adhesions as well as some who strongly suspect they do can post on the topic.

    This subject needs to be brought out into the open- however, very few doctors will discuss adhesions. It is difficult to diagnose and successfully treat, but I think that the main reasons advances have not been made in either diagnosing or treating it is due, in large part, to the fact that the medical community doesn’t want to acknowledge them. If they did, I believe we would have a more widely successful adhesion barrier for use during surgery by now.

    Also, surgery is not the only cause of adhesions. Endometriosis, which goes undiagnosed in many women, is a cause. Also burst ovarian cysts, which also may not be diagnosed. A job or sports injury, or bascially anything that causes inflammation can lead to adhesions.

    If the adhesions cause GI problems, an adhesion sufferer will probably be told they have IBS and will have to live with it.

    I also brought up this topic to Nancy Norton, President of IFFGD (International Association of Functional and Gastrointestinal Disorders). She said they will check into it and address it in their publication for IFFGD members called ‘Digestive Health Matters’.

    I believe I have been suffering pain and GI and sexual dysfunction for 25 years due to adhesions but cannot get a doctor to consider this. Whenever I bring the subject up, my Dr. visits go from civil to hostile and come to an abrupt end.

    This topic needs to be brought out into the open.

  • How to Cope with Pain // Apr 16, 2009 at 6:53 am

    Great comment, Joan. Thanks for writing.

  • jeisea // Apr 17, 2009 at 9:53 pm

    This is an excellent post and great comments. Unless I’m mistaken inflammation is involved in the formation of scar tissue. My son had a fundoplication operation for Barretts Oesophagus. He’s had no previous surgery in the area but we were told he had masses of sticky scar tissue. Joan is spot on about lack of awareness of this problem. I wonder if treatment and prevention might be related to reduction or prevention of inflammation.

  • Karen // Apr 20, 2009 at 11:14 pm

    It seems some women who have been diagnosed with “endometriosis” are actually suffering from adhesions. In addition, too often doctors place all emphasis on the pain of endometriosis, while placing little to no emphasis on the subsequent factor: adhesion formation. Adhesions can often be the cause of pain-sometimes agonizing pain-in cases that have been diagnosed as “endometriosis.”
    Please see article:
    http://ezinearticles.com/?Endometriosis—Finding-the-ME-in-the-Disease&id=1265993
    Since adhesions are foremost known as an iatrogenic disorder, doctors are reluctant to talk about this all too common cause of pain in the body. It is up to each woman to sort through the pain in her body by thoroughly studying your condition. Inflammation (endo is an inflammatory condition) causes adhesions to form, as Jeisea stated above. Ruptured ovarian cysts, as Joan mentioned above, can also cause adhesion formation.
    My daughter, as Aimee, also became ill at the age of 13. She suffered agonizing pain 14 years due to being misdiagnosed by doctor after doctor. Thankfully, she is now well, though restoration of her health was not easily attained. Wishing you all the very best! Karen

  • Sarah // Jul 13, 2009 at 2:38 pm

    Its amazing how many people have this condition. Its true what people have been saying about doctors, One’s i’ve seen are all to eager to help untill they find out I have adhesions. Every time I just get sent to the pain clinic and phycologists because as one of my doctors have said ”the pain can’t be as bad as you say if you have adhesions”. But isn’t pain different for everyone?? And I’d love to see my doctor cope for 2 years in agonising pain like I have….If it was his daughter i’m sure something would have been done straight away.

  • Karen // Aug 4, 2009 at 11:13 am

    Hi Sarah,
    So sorry for your pain. Most doctors are at a loss when it comes to adhesions . The condition is akin to pulling weeds-you take them from the ground one day only to see they’ve come back the next and brought four cousins with them! That’s when most people search for another method of “killing weeds” because the method that was tried did not work.

    It is much easier for the majority of doctors to send the sufferer to a pain clinic than take you on as a surgical patient and then fear litigation down the road. Some doctors may want to help you, but realize they can’t, while others have no intention of setting themselves up for problems. Of course, just as you, my daughter and I learned this painful truth at the hand of her immense suffering.

    Hindsight is truly a clearer glass from which to view! I can look back on my daughter’s painful years and the many, many doctors who sent us packing (some threw up their hands with only “I’m sorry, can’t help you,” while others scribbled out that “depression diagnosis” RX-the ultimate insult for one who who is suffering incredible pain) and I can now clearly see their reason for doing so. In our professional lives none of us actually look for things to make our lives more difficult. Life is difficult enough. Doctors are no exception. Patients often have a different view of the doctor because we were taught the doctor is the one who will “make us better.” Thus, this is what we expect. We go in with high expectations and are greatly disappointed when we learn-time and again-the doctor did not have an ear to hear.

    Well, it’s not necessarily so that they did not hear, but rather they heard all too well! You are a patient who is suffering a condition for which he (she) has no answer. And, unfortunately, too many of these physicians do not want to admit they have no answer, (for they know we come to them believing they have the answer)! Thus, it is easier to place blame on the patient, minimize your suffering by lame comments or scribble out an RX and tell you “you’re depressed,” or “you’re female and depressed,” or “what’s wrong in your home?”, etc. etc. than to admit they are a doctor who has no answer for your particular ailment.

    Of course, the blatant insinuation that the sufferer is a “mental case” or a “depressed individual” also works well for certain physicians, as he is now assured you won’t be gracing his doorstep again. He has washed his hands of you, which was his intention. Simply put: He doesn’t need a patient who makes his life more difficult and an adhesions sufferer is often seen as: “red flag alert.” Sad, but true in many cases.

    And, let’s not forget that surgery is the number one cause of adhesions. So, for many doctors you are a living, breathing, in-your-face-deal-with-it iatrogenic patient. It doesn’t even matter if you’ve never had surgery (as was true in my daughter’s case) they just want you out of their office as quickly as they can get you out.

    Thankfully, there are other physicians out there who will admit their defeat to this illness. Even one or two who will actually point you in the direction you need to go. The problem, of course, is finding the one or two in the gargantuan medical maze that you are forced to maneuver.

    Because of the long and difficult battle my daughter faced with this illness, I now work to promote awareness. As many know, my daughter received help for her condition in Europe. Had there been help in the USA, we would’ve stayed home and gotten that help. I realize that many people cannot go to Europe, at the same time, I realize that change won’t come to the USA without the adhesions sufferers making their painful plight known. Wishing you free from adhesions! Karen Steward

  • Lara // Aug 31, 2009 at 6:22 am

    I am 49 years old. Once again I am sitting here crying from the pain of adhesions – which are back again with a vengeance.

    When I was 28 I was diagnosed with endometriosis. I subsequently managed to have one child ( now 20) – but no more children due to endo. I had a total radical hysterectomy at age 41 due to serious disabling pain for many years – I did not want and could not have carried another pregnancy anyway due to pelvic adhesions and endo. The surgeon who did my hysterectomy told me that my uterus was “healthy and normal” – however I had extensive adhesions evrywhere – all over uterus, ovaries, bowel etc. In 2007 I could bear the pain no longer and had laparoscopic adhesionlysis. I had extensive adhesions from my bowel up to and all over my liver. It was apparently like rubber bands inside. I have had pain relief for two years – but just recently the pain – which is variable in frequency, type and area – and is like rubber bands are inside me pulling on everything erverwhere.

    This ‘disease’ has wrecked relationships, employment, and cost me a great deal in evry way. I cannot work full time, i have lost my house and just about my sanity. I will have another operation and ‘check’ to ensure that the adhesions are not twisting my bowel or doing anything dangerous. I will have them excsied once more. So once again it will take me weeks of recovery and slow progress to get better again. Since my initial diagnosis of endo back when I was 28 – I have had on average an associated operation evry couple of years. The longest I have gone has been three years. THis has ruined my life , my hopes , my dreams. What else canI say? I am a strong intelligent educated woman – but i struggle with this disabililty. Hardly anyone knows I have this. If I tell people then they treat me as if I am a problem or a liability. I receive counselling and great support from my doctors and counsellor. But all the help in the world cannot seem to fix this for me.

    All I can say to you- with hindsight- if you are a woman contemplating abdominal surgery – think twice before you do it. Do you really need it? Can you live with the possibility of adhesions afterwards for the rest of your life?

  • How to Cope with Pain // Aug 31, 2009 at 6:33 am

    Lara, thanks for sharing your story. We’re sorry for your pain! But thanks for your words of wisdom.

  • Rachel // Oct 1, 2009 at 4:02 am

    I would like to say thanks to Lara as now I don’t feel as alone in my suffering. I was diagnosed with endo at age 17 and then went on to have multiple surgeries before then finding out I had borderline cervical cancer at age 29 which resulted in a hysterectomy. I kept my ovaries but in hindsight wish I had them removed.

    At 34 after visiting 3 doctors and being ignored I was rushed to hospital with a 25cm dermoid cyst wrapped around my ovary, bowel and bladder. The surgery to remove this was exstensive and has caused ongoing adhesions to grow all over my abdominal cavity with surgeries every 6 months the only way that I can hold down a job. I have come to the point last month though where I now have so much pain and bloating that my Gyn is going to remove the other ovary and cut me open about 15cm to cut away yet again adhesions that are strangling my bowel and bladder.

    Lara I hear you. I am single after failed relationships due to my being in bed so much and finding sex very painful. I get to Friday and after work and just want to spend my weekend recovering so I can cope with Monday again. My kids are understanding but I know it is hard for them sometimes as Mum is so tired and in bed so much or cant bring herself to spend all day shopping in the city. I have lower back pain, leg pain, bowel pain and I am sure depression. I realise as I write this that I really only have one girlfriend left in my life as they others have all but vanished over the years…. maybe because I am unreliable socially! Well to all of you out there who are living with this awful pain and frustration I feel for you and would be happy to email or keep in touch with other women who share a similar history. rachel37@bigpond.com

  • Gary // Nov 1, 2009 at 11:04 pm

    I want to let you all know that I am thinking of you and understand what you’re going through, too. I’m a 47-year-old man who has been dealing with the pain of IBS-C, diverticulitis, adhesion-caused recurring small bowel obstructions, and resulting surgeries for 23 years now.

    People hear and talk about women suffering from this problem a lot, but I think that the men who have it too, are maybe a little less expressive or embarrassed to mention it. The one good thing about this, if you can call it that, is that we can all come together and share, commiserate, and make each other know how we are alike in numbers and not alone.

    It is a terrible way to live. If anything could come close to causing a person a nervous breakdown, the incessant pattern, pain, and life-quality interruptions of abdominal adhesions can do it. I feel for the poster above who described how adhesions have so badly affected so many areas of her life. To non-adhesion sufferers, I say: Sure, go ahead and tell me again how easier it should be for me to go to work, keep up social activities, have a lot of relationships in my life, relax on weekends… If they only knew the pain I experience everyday — never knowing if it’s just pain, or pain representing something bad going on inside my digestive tract. The pain I could maybe live with, but the terror of knowing it’s adhesions returning…I just can’t.

    I have read about people who claim to have been abducted by extraterrestrial aliens, and how when it happens they say “Oh, no, not this again!” and feel like they are literally ripped out of their normal life routines — and they have nothing they can do about it. Well, that’s how living with adhesions and adhesion attacks feels.

    Someday, maybe there’ll be a serious medical effort to seriously develop a serious approach for seriously dissolving these damned things medically. :-o Right now, I’m looking down at a bulge in my lower-left abdomen that has been occurring, as symptoms have returned the last several weeks and I have a related gastro doc appointment within 2 weeks. This doc and I have worked together for so long, I feel like he’s part of my family! Things that do help sometimes are the medicine dicyclomene, as well as yogurt, Tylenol, decaf peppermint or green tea, lots of water, Miralax, Metamucil, and nice soft slow-cooked oatmeal, etc.

    I really do feel that doctors should only get their licenses if and in the areas in which they experience certain medical problems — because otherwise, we’re specimens to them, they’re disconnected from understanding the non-physical affects of our pain, and they just don’t get it. I admire the doctor above who describes all she’s gone through, and her supportive relationship with her spouse and her longtime patient advocacy. We need a lot more of that. I’m praying for all of us that, someday, some way, we can rid ourselves of our adhesions, or at least of the pain and continuing damage they can do to our lives both physically and psychologically.

    Gary

  • josie // Nov 4, 2009 at 3:30 am

    Has anyone ever checked out Clear Passage
    Therapy? I hear they do wonderful work
    for adhesions, etc.

  • Hattie // Jan 3, 2010 at 5:20 pm

    I was diagnosed with ovarian cancer January 26, 2009 and had surgery for removal of both ovaries. Since surgery I have had off and on lower pelvic pain. Could this pain be adhesions from the surgery?

  • How to Cope with Pain // Jan 3, 2010 at 9:53 pm

    Hattie, adhesions could be one of many possible causes of intermittent discomfort. Have you discussed the issue with your doctor?

  • Julie // Jan 24, 2010 at 7:04 am

    My story is almost identical to aimee’s….. after my hysterectomy for severe endo,3 surgeries before this..uterus badly diseased,ovaries full of endo,and yes bowel,bladder all stuck together,had keyhole for hysterectomy took over 3 hrs to seperate all my adhesions .Well pain back again only 4 months after op….went back in to find adhesions had attached to my appendix..
    this was 9 wks ago….but pain has returned even worse…..going for a ct scan …definately dont want more surgery…but glad i found this will mention to consultant about barrier for adhesions.Feels like im never going to see the end to all this after 4 years im still in pain.

  • Kim // Jan 31, 2010 at 10:24 pm

    I would like to say thank you to you all – I think I can handle the pain if you all can!

  • Desi // Mar 20, 2010 at 7:05 pm

    I have had this debilitating condition for 30 years now, aged 51. So many operations, post-operative ileus (bowel not working) with TPN feeding staying in hospital for a month each time until the bowel woke up. Now I’ve got to the stage where my bowel won’t work without so many laxatives every day. The quantities have increased over the years alongside a deteriorating function in bowel motility due to severely dense adhesions, sticking it to everything. I suffer from almost continual partial bowel obstructions and sometimes full obstruction, over the years I’ve lost count for the surgery to rectify these. Food can’t get through,now I am taking Glycoprep to flush out the system, so now I am told my whole colon has to be removed. I get obstructions in small and large bowel, so at least that takes one problem out of the equation. But I am so scared about the surgery and its enevitable complications as it will have to be another large incision, not possible laparoscopically. He said it will be very difficult surgery which will involve a slow recovery. I am depressed, as times spent having a good day every now and then are so far less than they used to be. I can hardly eat properly and take nutritional supplements, and weight loss is becoming a problem now. I coped for 10 years without having surgery until now, as things have gone downhill so much as my bowel is deteriorating, but I’ve lost the energy to fight anymore. I am so upset about this as I have most of the time managed to maintain a positive attitude in the rest of my life. Lucky I have a supportive and loving husband & son who understand what I am going through. I have seen those looks by doctors in the past, but luckily my surgeon and GP understand and I can talk to them. My surgeon has told me he feels so sorry for all that I have gone through but admits that he cannot guarantee anything, but will do his best to try. He does have a good reputation in this area of colorectal surgery and has used the barriers in me in the past, but despite initial relief, the condition returns at some stage. At the moment, I am trying to cope with the depression as well as the pain, but at least I have a doctor who says it is any wonder I am depressed! It is hard to remain positive in the light of everything ahead and dealing with daily, as it seems there is nothing to be positive about. I’ve probably now made you feel depressed! Sorry about the venting!

  • How to Cope with Pain // Mar 21, 2010 at 8:19 am

    Desi, thanks for sharing your thoughts. I don’t think you made others feel depressed. Rather, you shared a difficult situation – something that others here can relate to. Good luck with the surgery!

  • Desi // Mar 25, 2010 at 5:17 pm

    Since my last posting, I am thinking about not having the surgery. I’ve just been in hospital again with another partial small bowel obstruction which they cleared with Gastrografin. I am too scared at the thought of more surgery so have told myself that I will try to cope with my problems again rather than go down this road. I tell myself that my other organs are still working and I’d like them to stay that way and see if I can find a way to deal with the pain and treat myself at home more. Will see how long I last I guess! I am going to make another appt with my surgeon to discuss at length about coping more at home by myself as to opposed to having more surgery. Looking back, my initial surgeons did not talk to me much about the long term consequences. If I had fully understood all the negatives I might have found more courage to cope with the pain earlier on and avoided some of the surgery instead of hoping for a “fix-up”. I asked once what were things going to be like as I get older, and was told I shouldn’t worry about things that might not happen.

  • RFID Reader // Apr 16, 2010 at 12:02 pm

    This is an interesting article. Thanks for sharing.

  • Lucy // Jun 25, 2010 at 8:03 am

    What types of abdominal pain are associated with anxiety?

  • How to Cope with Pain // Jun 25, 2010 at 9:49 am

    Lucy, that’s an interesting question. While pain in general can certainly be associated with anxiety, I’m not aware that any specific types of abdominal pain are linked more closely with anxiety.

    However, we’re learning that our guts are closely linked with our minds and our immune systems. So some connection is possible. An example of this would be that one symptom of pancreatic cancer is depression. Another example I’m aware of is that some abdominal pain can cause a feeling like you’re going to faint.

    Do you have information on anxiety and abdominal pain?

  • Eileen // Sep 1, 2010 at 12:48 pm

    Has anyone had any luck using the herbal abdominal remedies on the market? I can’t imagine how they could work but want to try anything before having another surgery.

    I’m happy to hear that I’m not alone but feel for all of you!

  • Emma // Oct 6, 2010 at 2:00 pm

    This is my first time going to this site, and your post was amazing, I myself had my first surgery at 14 for female trouble as they called it, but it was enodmetreosis and the pain for the past 30 years has ruled my life also. I have one child that took forever to have and after he was born I was told by the fertilty doctors to not even try again because the adhesion were so severe that would never get pregnant agian. After my hystorectomy at age 25 I thouhgt it would be over but, 5 years later it came back and so the surgeries continued. Last October I was on life support when the adhesions had wrapped around my small intesines and when they removed them the bowel ruptured, thus making me septic and so sick that I am still recovering 1 year later and back on medication for more pain because after 4 surgeries last October the adhesions are wrapped around my organs again.
    Just know that you are not alone and make your doctor listen.

  • Ann // Oct 12, 2010 at 11:25 am

    After being treating three times since July for diverticulitis, and two trips to the ER, my surgeon finally did laparoscopic surgery on me last Wednesday. Turns out I had lots of adhesions, which he said he removed. I felt pretty good until yesterday when I had my first bowel movement. Now I’m back to pain and so depressed.

  • Ron // Oct 28, 2010 at 6:15 pm

    For the last three years I have suffered with severe abdominal pain in my lower left side. I had no pain at all until I had a flexible sigmoidoscopy, from that day forward I have had nothing but trouble. Four months after this procedure I had emergency surgery to remove an adhesion which had formed a ring around my bowel and blocked it. After surgery I thought that my problem had been solved, how wrong I was. I have pain 24/7 I cannot find any relief, I have tried tablets, diet, exercise and alternative treatments, to date nothing has worked. After reading the postings above I feel sure that my problem is adhesions although my doctor says Ibs (I have pain with movement, which does not fit Ibs symptoms). My whole life has changed for the worse, I cannot hold down a job because I have to take to my bed at any point, I cannot plan anything ahead, I can’t enjoy a drink anymore which has affected our social life, I find it difficult to travel for more than an hour at a time, I was ill for two days over summer due to a different water supply 60 miles up the motorway. I do not enjoy the foods I eat, my low moods are affecting my whole family and I am desperate for any suggestions, I have been refused every benefit I have applied for and do not know which way to turn. I feel very bitter towards the medic who carried out the sigmoidoscopy as I refused the procedure but was coerced by him and other staff on the day. I have been prescribed Nortriptyline, and am on the waiting list for hypnotherapy as pain management won’t touch me, any comments would be greatly appreciated?

  • Suzanne // Nov 24, 2010 at 5:35 pm

    I too suffer from abdominal pain due to a motility disorder, multiple intestinal surgeries and obstructions and adhesions. My only relief has come from pain meds, but my doctor does not feel comfortable prescribing more that 1 pill/day. She said if I need more than I should see a pain specialist to monitor my meds. The only problem is that so far none of the pain specialists I’ve called will treat GI patients. If anyone has any recommendations please let me know! Thanks

  • How to Cope with Pain // Nov 24, 2010 at 7:07 pm

    Suzanna, Johns Hopkins has a very good pain program. I’ve never heard that pain docs won’t take “GI patients”. Could you try Hopkins?

  • Suzanne // Nov 24, 2010 at 9:19 pm

    I would be willing to look into it. It’s not close by, but if they were willing to treat me and monitor me periodically, then it would be worth it to me. The pain management programs around me have all said that they do not take GI patients, so that is why I’ve been so discouraged, but maybe Hopkins will be different. Thanks for the info.

  • 1st-Time Mommy // Jan 24, 2011 at 7:51 pm

    It is so helpful to me to read others’ stories and trials. I went through three surgeries in a 6-month period (all right after my son was born) to deal with dermoids and adhesions. I don’t know what else I can do.

    I wrote a post on my blog asking for advice from sufferers for whome alternative treatments have worked. If anyone can read it and post a comment about any treatments or therapies that have worked for them, I’d be very appreciative. Here’s the link. http://8poundpreemie.blogspot.com/2011/01/im-throwing-pity-party-and-youre-all.html

  • jane // Feb 20, 2011 at 3:27 pm

    Wow – so glad to find this site.

    Appendix ruptured at age 11, lucky to live thru the poison/infection. Have extensive adhesion disease thru the entire peritoneum as a result. Have had total of 4 abdominal surgeries. Destroyed the fallopian tubes, no kids. lost 1st ovary at age 30 and total hyster. at age 41.

    Like so many of you, it’s affected my home life, social life, work life, ability to do anything (just folding laundry was a torture) Suffered thru 2 decades of doctors who never touched me but couldn’t see anything on an MRI,CAT,Xray so they didn’t think anything was there. I was “drug-seeking” – they said my home “wasn’t safe” and my husband must be beating me because they saw no reason for my pain or depression. None of us had ever heard of “referred pain.” Even psychiatrist totally dismissed me and thought I was malingering and treated me worse than anyone – mental rape.

    Suffered all these years with nothing more than a tylenol or an aspirin and kindness from my husband. It also affected my structure and have been plagued with neck, back, hip, low back, sacrum & coccyx issues (all aggrevated by being hit by a car and rear-ended a few times) those insults tore up my adhesions and so more were created. didn’t sleep a full night for many many years.

    FINALLY, found a very gifted physical therapist – pelvic health specialist, who goes deep – deep massage or sometimes vaginally or rectally to loosen up the adhesions. She believed me because she could feel the adhesions all through my abdomen.

    Two + years of copays and a family practitioner who keeps referring me for treatment (for the back, not the pelvic issues – ins won’t approve pelvic treatment) has changed my life. I am pain free for the first time since I was 11.

    I still have horrible bowel issues but EVERYTHING has changed. the physical therapy is temporarily painful and I sometimes bruise. It is alll sooo worth it.

    I spent many weekends of my youth on the couch recovering from the work-week because sitting at a desk hurt my stomach so much. couldn’t stand either due to the structural issues that affected my feet and back. it was viscious cycle. since I’ve been pain-free, I sought out counseling to get some perspective. What a big revelation when I scored in the 95th percentile for PTSD. All that pain, that negation by the medical community, the lack of understanding by friends, employers, coworkers & family affected me more than I knew. After 9 months of therapy, my trauma score decreased substantially. I knew I wasn’t crazy or a wimp. The anxiety has really lifted. I actually have hope and joy – didn’t realize i’d been without it.

    I knew, but completely underestimated, the impact of the anxiety & pain cycle. they just magnified each other.

    It’s not over for me, but I know I will not EVER have an elective surgery because it just makes everything worse for me.

    I hear that there is new non-invasive laser treatment that is looking promising for breaking up adhesions. Really looking forward to that.

    Best wishes to you all.

  • How to Cope with Pain // Feb 21, 2011 at 7:15 am

    Jane, thanks for sharing your story, and I’m glad PT has helped!

  • Karn // Mar 6, 2011 at 3:31 pm

    I am stunned to read this blog, its like having someone else write about my experience.
    None of the doctors I have seen knew what was going on and sent me to so many places to have this scan, that mri…it was so frustrating. I was starting to think I was crazy because the tests all came back normal. I have been in so much pain.
    I didnt see any responses on Clear Passage, has anyone been there?

  • Darryl // Mar 19, 2011 at 9:20 pm

    Men can get this condition too. I am currently suffering from it as well. In men, its even less understood or tolerated. I had been to many many doctors not understanding what was wrong with me. Eventually all the doctors in my realatively small town knew me, and they made me feel crazy telling me, “nothing is wrong with you”.

    The first urologist i saw out of town however told me about them on my very FIRST visit. Apparently this condition is caused basically from complications due to surgery–might explain why those associated with my certain hospital network didn’t want to admit cause. In my case, I had an appendectomy for a burst appendix. Apparently, it had been leaking for a while. The surgeons report said I had extensive pertonitis with puss in the abdominal cavity. Doing my research on this, it would have been wise for the surgeon to then open me up and install some type of barrier to prevent these adhesions. This didn’t happen, instead he continued with laproscopy.

    In addition, through my research, I found that inadequate pain management, and prolonged immobility following an abdominal surgery can also lead to adhesion formation due to the bodies response to injury. I clearly remember during my recovery in the hospital complaining about how the medicine wasn’t working to control my pain. I also remember them telling me NOT to get up and stay in bed for 3 days.

    So in conclusion, many of these adhesion problems due to surgery can be the result of surgeons not believing in them or understanding them and not taking adequate care to prevent their occurance. As a result, they are ignored in diagnosis at the expense of a patient sanity.

  • Deanna // Mar 31, 2011 at 6:05 pm

    First of all I would like to say I am glad I am not alone,but saddened to know that so many other people have gone and are going through this…Unlike Aimee I am not so fortunate to have any kind of support system. I literally have had to deal with this on my own!! Even though I have medical proof and have literally had my life saved by many doctors I still have doctors and people treat me like ” it can’t be that bad” or because the test they run come back normal like all the test before!! It blows my mind! I use to be very physical and outgoing. I have been reduced to staying inside dealing with severe pain everyday. Pain so bad past six days I can’t even wash my dishes…horrible!! Plus I have gained over 60 lbs. I have other health issues along with major depression…I don’t just feel alone, I am alone! On top of it my now sixteen year old son has also suffered because of all this. My first sugery was when I was seven(appendix burst) But my bowel obstruction came from hysterectomy from three years prior, and the hits just kept on rolling since(several bowel surgeries & colon resection). Now my pain is steadily getting worse..and after you have dealt with this kinda thing for a long time you know what is wrong, I am finding it just as difficult to find someone to help me!! I am scared that if no one helps me it is gonna kill me…What do I do? Weird, I pray for death sometimes daily but fear it at the same time!! Does that make any sense? I am only 43 years old and the past eight years have been hell and I just want one pain free day!! Is that too much to ask for???? I just want to live again…I wish it was as easy as “just do it”. If it were that simple…I WOULD!!!

  • Julie // Apr 29, 2011 at 7:37 pm

    Somehow, misery loves company does not seem to do justice ton those who have posted here, or to those who are about to post.. Me.

    Three years and countless doctors later, after being told that my belly feels like concrete, and after surgeons say that they will not touch me, I have given up. I have other issues which a doctor told me MIGHT be part of a “syndrome” but in terms of daily life, adhesions hurt most. They hurt my husband and our intimate relationship. The MDs don’t get it. They deprived my son of a mother who wanted to be more participatory. The only relief I get is from antispasmodic medication which can be addictive so I don’t want to take it. I did physical therapy until the therapist hurt me and I have had worse pain since then. I have been dealing with annoying pain since college (1977). I have been dealing with debilitating pain for about seven. I would really like to be normal so I just pretend to be. I confess that I worry about having abdominal problems more severe than adhesions, like cancer, which I just write off as adhesion pain. I mean, how do I know what makes adhesion pain different from an obstructed bowel due to adhesions? how do I know if it is adhesions, kidney issues or sacroiliac pain due to musculoskeletal-skeletal issues? And why do I have to ask all of these questions here? Because it is safe to vent to people who “get” it. I am too stupid to give up but I am so TIRED.

    I fear bowel obstruction because I would need surgery which would leave more adhesions but I would welcome the opportunity ton have some one use a barrier and remove more adhesions at the same time. Remember that I started this paragraph with “I fear surgery” and I do; I would not volunteer. But then I fear that my husband will forget to say to the surgeon, “Don’t forget the Seprafilm.” and we know how much the doctors LOVE to be told what to do.

    I will close my vent with a warped phrase that helps me laugh through the bad spells…”Pain is good; it means you’re still alive.” But my son’s reply is “Pain is bad because it hurts.”. I wish you all well.

  • Carolyn Williams // May 28, 2011 at 12:33 pm

    I have had adhesions about 20 years i have read all there is & been to every crackpot Dr that has a office inluding a pain clinic as soon as the word Adhesion comes up they THEY KNOW NOTHING & also THEY DONT CARE They want to get you out of the ir office i have read all of the stories about the people with adhesions & my prayers are with you,I would like to know if anyone has tried Accupuntur & if so WHAT was the results Thanks for your time Just remember Doctors Have A licens TO PRACTICE & thats just what They DO GOD BLESS ,, C W

  • John // Jun 11, 2011 at 6:40 pm

    Hello,
    I have been suffering for 24 years with abdominal musle pain. I have no mobility and no strength – i can’t carry anything that weighs just a couple of pounds. About 12 years ago I had to have my gall bladder removed because I had one large stone. A few months later I was like a new person. I was able to do things physcially that I could not for more than 12 years. A couple of years later, I was lifting something and I felt immediate pain in the abdominal muscles. For the next sevral months I had all kinds of tests and nothing came back positive, yet my pain getting worse. I again could not lift anything and struggled every day. I have to wear a surgigal binder to get through the day. Finally, I went back to the surgeon who did my surgery, he went back in and repaired what he called a distesis??? He also said that one of my organs was stuck to my abdominal wall and that I had alot of adhesions which he removed. I fealt like a new man again and resumed my activities. About 12 months later I was mixing concrete and the pain came the next day and for the next 10 months I could not function again. Back to the surgical binder just to get through the day and again could not lift more than a couple of pounds. Bending over hurt etc. I went to another surgeon (my original one retired) and he went into check and said he found more adhesions and removed them. I was okay on and off for the last 4 years – always had some pain but could get through the day. Well 6 weeks ago, it started again but I do remember doing any lifting to make it worse. I have not been able to do anything for the last weeks and the pain is unbearable. Percocet is not doing anything to relieve the pain. I am going through all the GI tests again (went through this twice) and like before they are all coming back negative. I suspect the adhesions are the cause, but I just don’t know what to do anymore. I am finding it very difficult to go to work (I have a desk job), but the pain is so bad I can’t make it through the day.
    Appreciate any suggestions on best approach to treat these adhesions – I am sure surgery to remove will help, but it won’t last. I am not even sure the surgeon will want to do it again because he mentioned the last time (he had my original surgeons notes) that adhesions tend to come back – but the pain is unbearable and I need to find relief.

  • Karen // Jul 20, 2011 at 3:11 pm

    Hello all, I feel like we’re family

    My pain started with my cycle, my mom thought it would go away after I had kids in the future. I’ve gone to emergency rooms and passed out while giving my name. I’ve passed out on the train and woke up wondering why so many feet were at eye level. This thing “Adhesion disease is a beast. The doctors first said it was middle smurks (it sounds like how I spelled it) other wise known as middle pain. Obviously it is pain and yes it is often in the middle of your cycle until it gets smart and attacks at any time. I started out with a laparoscopy to look for what was hurting that didn’t produce any results, but caused even more pain within a few weeks. I had another laparoscopy, the doctor punctured my peri*something vessel and had to open me up to stop the bleeding with a laparotomy (much like a c-section incision). Oh lord… more pain but similar to before. I started trying to conceive and was unsuccessful for 7 years, I went through IVF, got pregnant and had my daughter in 2003. When she was being delivered through an emergency ambulance trip to the closest emergency room in a winter storm, the doctor/surgeon was shocked, she told me that if I had waited to come in, they would not have been able to deliver her on time, it took nearly 3 hours just to cut through the adhesions to get to her, if I was in active labor she would have died. She used some kind of foam after cauterizing areas that were bleeding. When I make fast movements the pain is remarkable and unbelievable. I became pregnant when my daughter was about 9 months old again. I din’t know that I was pregnant. I woke up in the middle of the night without talking to anyone and drove myself to the emergency room.

    I told the doctor that I was experiencing familiar and acute menstrual cycle pain prior to the onset of my cycle. They gave me pain killers and rain a standard pregnancy test. I was shocked when it came back positive/pregnant. They pain was so bad, I knew it was a tubal or ovarian pregnancy.

    My level started dropping within two days. During the c-section they cut away so much adhesions that I knew it was the reason I was able to become pregnant without intervention.

    3 years later I became pregnant again though IVF, the delivery was at another hospital with another surgeon. I warned him before hand of all the things the previous female doctor informed me of, this cocky doctor seemed more impressed with his abilities than interested in what i had to say. He assured me everything was going to be fine. A few months later during my 2nd and last child’s delivery, the doctor scolded me for not preparing me for how difficult the surgery would be, as if I had some odd insight into my insides and knew what it looked like. He had to fill my bladder with sterile milk to ensure they sewed up all the nicks they made while cutting away the adhesions. He noted that there were also large blood clots that formed after previous surgeries (which meant internal bleeding).

    I went though most of this while in the military at least 15 years of it. I only talked about it with my doctors as I have been a pretty rock hard soldier. This is a terrible thing, I have used medication to deal with it for the majority of the last 21 years of my life, heating pads have helped a bit. Activon for arthritis (deep muscle pain) has helped a bit. A muscle rub called “heat” has also helped a bit, probably because it is hot and does burn– it may be more of a distraction than anything else.

    I recommended trying to have children early on if possible if you suffer from these kinds of pains. I was 27 when I had my 1st child, and 30 with my 2nd.

    My husband has been forceibly understanding if not difficult and rude with the “your always in pain comments”. I get angry and reply with vulgarity and threat of my own to keep things just about equal.

    I feel your pain and am still feeling it. I have recently been put on Metformin, it is atreatment for diabetics and for women with PCOS. It made me feel nauseas. I just joined weight watchers in hopes that a different diet may help.

    I have no answers, just things I’ve tried. I wish you all luck, and I am always hear wit a listening ear. If I find out any “helps” I’ll post

  • Randall // Jul 24, 2011 at 1:59 am

    I guess I am a very rare case, since I am a man. In 1999 I had a hernia right under the belly button. It was fixed and no problems. In 2004 I bent over and tore something in the same place but deep and felt diff. like a sand spir. Standing moving was bad, and sitting was the worse. 2005 a volunteer surgeon went in me. When I woke up it was pain like never before all over my abdomen, I guess from the gas and my weak wall. Many things did not fit. I was told a small tear was fixed in a place I had no pain and some adhesion’s were removed as well as some intestine stuck to my wall. All in places I had no pain. The report did not match what my son and me were told. This was the 1st I heard of adhesion’s. The pain I went there for was still there. It had already swelled in the area before the surgery but as time went on, it grew worse. My lower stomach was getting hard and I went up 3 jean sizes but losing weight. That surgeon acted far different afterwords and finely told me to take my issue else where. I was use to sucking up pain in my life, but this was like no other ever. I lost everything and had no insurance. Had to fight disability. took 3 years to get it. By then my entire lower stomach was hard and my intestines felt like they were smashed and all glued to my abdomen wall. It was hell, or so I thought, cause life as I knew it stopped. In 2008 I finely got disability and then a hard time finding a doctor that took that insurance. I had already been to the ER 3 times , the free clinic you name it, as well as relentless test. Once I found my doctor I had to go through them all again. I was down to the last 2 and in 2009 I had to fix my washing machine and trying to improvise I was in a very awkward position and low and behold tore something in my upper abdomen on the lower right side deep. It felt connected and every time I moved it ragged on it. The test were finished and one surgeon had already blew me off. My doctor has said all kinds of excuses, but no straight talk, or maybe I am just blind. I never was good at games. I have not called him on any thing I just went with it in fear of losing him and my meds.He then said I will have a problem getting it done local, I did not ask why, just went with it. I have walked on egg shells, trying to just talk and play dumb. That is prob the only reason I got what info I do have. He has said it is insurance, it is this and that, and even said I come off to desperate, to much emotion. I was thinking OMG anyone would be. Who knows their thinking.what is going on. At the time I had no means to travel. It just kept getting worse. And now I had it going on it 2 places. It got really bad at the 1st of this year and other problems came from it, going in and out. In May this year, 2 mo ago, while trying to do limited exercise just fighting to stay alive cause I had lost over 30 lbs, I was dn to 120. Something twitched in the newest tear damage and it was then no slack, solid tight. Feels like the 1st hernia only worse. It was then I realized it had to be effecting my whole inter plumbing. The 2 pain points and then the pain from my intestines being squeezed to death and so it now seems sort of the same on the upper tear area. My upper intestine blew up and was pain like never before, and backed up on the older damage below and making them blow up like. I could hear loud noises and this grew worse and worse. I was in a living hell. I went to 3 different hospitals ERs and was ran through and sent home to follow up with another surgeon and the whole thing starts over. 8 hrs after getting home the second time from the ER and after having a CT being given contrast and dye, I found myself on the floor along with so much pain, it felt like all my insides were on fire, then settled in the 2 damaged areas like burners,and all I could think was phone and 911. But I knew it would do no good. I went back to the 1st surgeon that blew me off the 1st time, and standing before him shaking in pain, begging him to help me. And he blew me off again using BS saying if he went in there and found nothing he would be in trouble. I wanted to say, that is why its called exploratory surgery, but I said nothing. My son was there, and we could not believe it. So much history behind this story I am all over the place here.
    So bare with me. I had to stop everything and I am on mostly liquids and very little food.. Food causes the whole system to go from very bad to extreme. I am doing all possible to keep my intestines calm. I have no quality life and 24/7 pain. The level is bad to serous. I feel like I am about to bust. We are not sure what is going here, if it is something to do with the 05 surgery or what it is but it is something. Its like I am on a black ball list. If it was not happening to me I would never believe anyone could be in this much pain and the whole situation and no one do any thing. Every thing has been done except going in there. My doctor said well, if someone goes in there then its a ethic thing. I been told so much I am so confused. My son is drained, it is a horrible situation. My doc gives me pain meds,, but no longer is good enough. My intestines are crying for help and can’t get it. This all stared in 2004, and lost my struggling business and my home. Then all was dropped in my son’s lap. Its been like being in a personal prison and in hell that seems to have no end. I am just sucking it up, and doing all possible not to let it go in the boiling range of fire. I lay in my bed and lift on a 5 lb weight trying to keep from wilting away. I have another apt on the 27th with another surgeon. Each time, I try to just keep it short and try it another way. The only thing that keeps me going is hope for someone to go in there and cut them all lose and maybe find the souses. Its amazing how you can live in a town all your life and everyone vanishes when your world falls apart. Its all about money and I knew that from the start. I was working on something that could change it all, and kept pushing forward until 2 mo ago when it got this bad. I always tried to do the right thing and live right. I was a single parent alone and my son was only 3. he is now 25. This has really messed up his life too. I feel lucky to have such a great son. I had allot of anger for so long but not any more. It is what it is, no one should have to be where I am, and moat have no clue how easy it would be to wind up where I am. I know if I don’t get something done and soon, well,, I am tough but a body can only take so much. I saw this site, and just wanted to leave this story. I see all that is wrote here is by women,, wow am I the only man suffering with this! I do not know what is going on, but I can only hope something happens soon. I got to much living left to do, it can not go like this. One thing for sure, I learned many lessons the hard way,, but I get out of this one,, my direction will be to change my circumstances no matter what or how. Its made me see life much different and reality for what it truly is. I sure feel for all those in my condition or any where near it. One thing is clear, few even know about this kind of problem, and does not seem to be taken serous. They do not show up on test, they have to go in there. And the guide lines give them a out and they use it. I know if I ever get the least bit fixed and my life changes, I will be doing all possible to bring attention to it and try to help others. This is a living hell.

    In prison pain Fla.
    Randall.

  • Gill // Jul 27, 2011 at 3:47 pm

    Hello,
    Was just trying to get somewhere with my abdominal pain (again). Saw this site and all the comments. My sympathies Randall, you are really going through it. I pray for you, that some Dr/surgeon actually gives you some time to listen to you. Drs can turn a blind eye and ear for that matter. There were some other guys who wrote in on the blog too, so you are not alone in your battle.
    I had a hysterectomy in 2008 and 7 months later had an ovaries removed as there was a huge cyst. Since then like some other people above this comment I’ve been having burning sensations. The weight has gone on, as any form of even power/gentle walking seems to pull at the left-hand side of my abdomen. I am so relieved to read that other people think you are imagining the pain. It is very real and I too wake in the night feeling like my stomach is on fire. I have tried to find a way forward but it does blight your life. My daughter tells me I’ve aged and that I can’t keep up with her etc. Kids, huh, but so true. I am only 47, feel a lot older and it has changed my life forever. I know I have felt so alone and depressed but am now trying to walk a little (even though it hurts) and to try to reduce my weight, to see if that helps. I’m now about 11 stone. Used to be just under 10, so not a huge amount, but enough to make me feel concerned that it will not get better.
    My heart goes out to Deanna and all the women and I wish and hope that they get the help they need.
    It has helped to find this site and I will keep looking on it to see if anyone comes up with a suggestion on how to approach the Drs. I wish they would read this and maybe then they would understand a bit more.
    Good luck.
    Gill

  • Laurie // Sep 9, 2011 at 1:26 pm

    My problems started at age 17 with a ruptured appendix, since then have had 11 abdominal surgeries including 2 bowel obstruction surgeries. I have had 4 bowel obstructions that didn’t require surgery and many partial. For the past 2 yrs I have been in constant pain in the upper right abdomen and it just keeps getting worse. I have times of vomiting, nauseated most of the time and miserable. The doctors have done all the tests, EGD, colonoscopy, MRI, CT scan, blood work and except for inflammation, find nothing to explain the severe pain. My last GI mentioned if the tests were “normal” it may be adhesions. I know I am full of them, as with every surgery they tell me they’ve never seen such bad adhesions.
    It is frustrating to me as the medical community seems to view this as “just adhesions” like its no big deal, but its a big deal when it affects every area of your life. I take pain meds daily just to function, and thankful I finally found a doctor who would at least do this. I find myself doubled over and crying more and more, hard to stand up straight ever because it hurts so bad. There is many things I have given up in my life due to the pain, like riding horses, it just hurt too bad. I still work, but it takes everything I have and its just because I have no choice, I have to support myself and keep my insurance.
    It seems people around me don’t understand it either. They feel bad cause I hurt, but will still say, “well hopefully they find out what’s causing it”, like adhesions isn’t a reason.
    I feel for everyone else who wrote on here. It is hard to live with SEVERE “invisible pain as the world and doctors see it. It is nice to know, however, that I am not alone, that there are others who are experiencing the same frustrations this condition brings to life.
    Laurie

  • GJP // Oct 1, 2011 at 4:06 pm

    Like a previous poster wrote here, I am really grateful that I found this page and I think that we are all kind of like a family too, albeit for an unwanted reason. I have dealt with abdominal adhesions disease, multiple surgeries, bowel obstructions, irritable bowel syndrome — constipation predominant, and diverticulosis for 25 years, as well.

    I think one of the most frustrating things about the nightmare of adhesions, besides the horrible physical tests, pain, and treatment experiences one has to endure many times, is the perspective and politics of our hospitals system. You can have a GI doctor and documented diagnoses and tests of many years — but if you need to go into ER, especially if at night or on weekends at, say, a teaching hospital, you are surrounded by young residents who are trying to impress and dot all their “I’s” and many of whom weren’t even born yet when you began having your documented problems. This can happen with a primary care doctor who does not intercommunicate with other players in your personal healthcare process too, such as with your GI specialist, etc..

    What I mean is that the docs are interested in you for as long as it takes for them to remedy your acute-care adhesions incident hospital visit — and then they basically just turn away and want to dump you out after that, seemingly not respecting and acknowledging that this is a chronic problem that doesn’t just go away because your surgery is temporarily successful and you’re being discharged from the hospital.

    In my last adhesions blockage and resulting surgery experience this past April 2011, I almost felt like rising up in my bed and socking the jaw of some 20-something snarky resident who stood over me in my bed, me half-out-of-it with pain meds in my veins, in front of his other colleagues all politically correctly standing behind him in a straight line about 3 ft. behind like they were some musical group background singers — and sarcastically telling me that I needed not to be so nervous and “to get on with my life…”

    I told this jerk that if he’d had my adhesions problem, he may not have even been able to finish medical school and be getting through his residency…do these “health professionals” get it at all, that this problem pulls us out of the daily orbit of our real lives for something like several months at a time, as we continue to recuperate at home post-hospital, torn away from our social life, our peace of mind, our loved ones, and our jobs and other daily activities?

    I know that preventing adhesions is something on the table right now, I guess…but there has to be at least some healing and better groundwork done to teach the medical profession how to interact with, treat, and intercommunicate with adhesions sufferers in a more dignified, transparent, respectful, and proactive way. We need them to take us — and our feelings of desperateness — more seriously. When we request re-prescribed pain meds, or treatment for a flare-up, we shouldn’t have to go into ER and through the same tests A-Z all over again, 19 times in a row, as if we are a brand-new patient, when our doctors and hospitals should have our already documented adhesions diagnoses on file in our records with them.

    I pray for all of us here, all you who inspire me and let me know that I’m not alone, either. I think that for liability reasons, doctors just don’t want to say and admit that they don’t know how to help us, because their ethics behoove that they ought to be able to; and for ethical reasons, our loved ones and coworkers will just kind of smile with a blank stare at us and say they care or wish they could help us, because they just don’t understand what they cannot see, but what we feel and live with inside our own skin under our clothes and disguised facial expressions, every single day.

    GJP in Boston

  • D // Oct 7, 2011 at 3:21 pm

    I haven’t had a chance to read all the posts her but am shocked to all the people with adhesions. I had complete hysterectomy at 25 couple other emergency surgeries after then 2 abd., adhesions surgeries last one n 2008. My pains back n fear it’s adhesions again, dr’s don’t believe n test for ever due to transparancy of adhesions being hard to detect they say apparently! I was 95% blocked both time. Its extremly painful and I don’t no what to do at this point any feedback would be great!!!!

  • Amy // Oct 23, 2011 at 9:53 pm

    I am so happy I found this site. Reading all these stories is as if I am reading my own! I have been dealing with adhesions since 2001 when I had a hysterectomy at the age of 26. I am getting ready to schedule yet another surgery for removal of the adhesions with my OB/GYN. I have been through and am going through what so many of you are talking about. I have seen the antidepressant Rx writing physician (I must say I too have questioned my own sanity!) I have taken the pain medicine and felt guilty for asking for it. I have experienced hard times in my professional life as well as my personal life because of the pain I endure every day. I just pray that this surgery will hold me for at least a few years. That seems to be my only hope these days.
    Good luck to all of you!

  • Amy // Nov 20, 2011 at 12:12 am

    I am very interested in what you all have shared here. I was diagnosed with endo when I was 20. At the age of 26 I went in for a lap to see how bad things were and a 30 min procedure turned into 2 hrs. The doctor removed many spots of endo. from my abdomen and said there were a few he couldn’t get due to the fact one was on my urithra ans bowel.
    At the age of 35, after suffering through years of pain off and on and doctor I started seeing suggested for me to try lupron for 3 mons and if I didn’t inprove then I would have to have a complete hysto. Mind you, I had only been married for 2 yrs and we were going to try to have a child that year. Well, we couldn’t. I had to have a complete hysto.
    Fast forward to about a year and a half ago and I have been dealing with severe abdominal pain, nausea, vomiting and going to the bathroom up towrds 20 times a day. A day with constipation would be a dream to me. No docotr has been able to figure out what’s wrong with me. I was referred out to UCLA and now am going in for another test yet again. I am also now seeing a pain management doctor and going on the 28th for a celiac pelvic block. I am just wondering now, if maybe this is what’s causing all my issues. I can’t work and can’t hardly do anyhting anymore on my own. Guess I will try bringing this up to my doctors to see what they say?

  • Shannon // Nov 29, 2011 at 10:09 pm

    I am in your boat and am wondering how you are an RN and pain meds. I sooooo badly want to become a nurse but just can’t make it through the day without at least one pain med.

  • Joyce // Feb 1, 2012 at 5:29 pm

    I have found a home, i too suffer severe adhesions, with either constipation or diareaha, the constipation isnt like hard stools, just cant pass. I have a new PC as the one I had been seeing just was not addressing my issues, I have an immune defficiency, had median arcuate ligament surgery last year, and other health issues. He doesnt believe in pain meds for abdominal pain so I am being titrated down, and then none, then a psch doc, and a physical rehab, and pain med. doc, I am having so much trouble eating, seems only liquids or soft easy to digest foods work at all, I am down to 111.7 lbs, I didnt even weigh that little in highschool. I have had endometriosis all my life, had 3 c sections, 3 laproscopies with lyasis of adhesions, and an open surgery for adhesions, a hysterectomy in 2002 and the adhesions are back with a vengance. I have been told by 2 teaching hospital general surgeons that they will not touch me surgically as they are afraid I am a mass of adhesions and they will cause more harm, my ob just dropped me, as I have a new Primary Care not in the Marshall group, and I also have been told I am deppressed and that is contributing to the pain. Ha, ya I am angry at doctors, and angry my ob led me on, and well I would like to not have this pain. I am in California, my Primary Care, the new one said that there wasnt any surgeon in California that would do the surgery when I am on medi cal, I am disabled and that is what you get in California. I am just lost, I dont want more surgery if it isnt going to help, or cause great problems but I dont kno how I will deal with this pain or having a life of eating creamed foods forever. Just feeling sorry for myself…

  • jane // Feb 17, 2012 at 3:11 pm

    Update from Jane

    Still in PT… my insurance company cut me off saying it is “maintenance” and not medically necessary. I go half as often and negotiated a cash price as I wouldn’t dream of not going until I have symptoms resolved. A 29 year journey. Much improved since a year ago – last posting. We’ve managed to render the adhesions from regularly pulling my spine out of alignment — absolutely life changing. With zumba exercise and PT, I am now stronger than my adhesions. I can now do basic house chores without having to go get adjusted. Now having major issues with adhesions kinking up my bowel and rectum… taking lots of softeners, senna and would like to find a way to get off this. Low peristalsis is an issue. High fiber binds up in the kinks and halts forward movement. I’m concerned about long term use of such laxatives but this is such a small price to pay for all I’ve been through. I also know the adhesions do reattach . . . something I’d like to avoid, somehow. In all, after being dismissed by the MDs for decades, I am the luckiest person alive. The chronic pain yields chronic depression and anxiety and low self esteem — Friends, it’s not YOU. Keep searching for the right person to help you. Do not give up hope. Don’t believe the doctors who say it is in your head – they are too lazy to try to solve what they don’t understand. Don’t necessarily believe the doctors who say you need more surgery— question the recommendation very, very carefully and weigh out the pros and cons of more surgery since more cuts yield more adhesions. Best wishes to you all.
    Jane

  • Kathie // Apr 9, 2012 at 12:03 pm

    I have all the above problems for 15 years after major surgery.
    My QUESTION, what are you taking to control the pain??

  • Sarah // Apr 10, 2012 at 3:08 pm

    Hi, just read all of this. I just got out of hospital here in the UK, for a small bowel obstruction. Last year I had to have colorectal surgery and apparently it is adhesions due to this. My surgeon said he is sorry but it can happen after any abdominal surgery. I found that i was eating high fibre (a doc advised me too wrongly) and this contributed to the obstruction. Since leaving hospital I have had a low fibre diet and yes it’s hard but it has helped. I am not like lots of you in the situation where I may be offered surgery to remove that adhesion causing problems. It’s a difficult situation.

    I just wanted to mention that there are diets on the net for ‘low fibre for bowel obstruction’. It’s hard I find trying to be healthy though, for someone who has always snacked on fresh fruit and veg. Cake and biscuits seem to be tolerated better. Just now am getting Ensure drinks on prescription but can’t live on them forever!

  • Michael // Apr 12, 2012 at 4:29 am

    Hi,
    I’m a 20 year old female who got sick in May 2008. I remember the pain so vividly, I thought I was having a miscarriage. Luckily I wasn’t. Though sometimes I wish that I had. After 3 years of back and forth between a group of WELL-PAID physicians I finally met an ob/gyn who agreed to do a procedure I had never heard of from any of the other doctors: laporoscopy. That is when I discovered adhesions. Since then my ob/gyn will not take me for anything other than birth control shot appointments (which are pretty useless seeing as how sex is incredibly painful for me in the first place). Reading these stories doesn’t give me hope. More than anything it scares me. I don’t want to be an adhesion veteran. Those three years pre-op were the worst of my life. I had to put my education completely on hold because I was unable to get out of bed for more than 4 hours a day. I had a wonderful boyfriend who is now leaving for boot camp. Every day I spend in fear of not if but WHEN they will come back. I never had surgery or any conditions that could cause this. The fear of not knowing what it was that was hurting me is almost as bad as the fear I now have of when I will be in completely debilitating pain again. To make matters worse I am not allowed to take any pain medication other than Tramadol because my sister is addicted to heroin and everyone is afraid that I too will become addicted to something. I don’t know what to do anymore. I’m just scared of what the future holds.

  • Ginny // May 6, 2012 at 9:40 pm

    I had my first surgery in 1982 it was a emergency c-section. The second was in 1997 for a hysterectomy. Then in 2004 I was rushed to the ER for acute abdominal pain. I was put through many tests only to have a surgeon tell me 3 days later they were taking me down for surgery not knowing what he would find. He said it could be cancer, or they may have to remove my bowel. He just was not sure. I awoke to find that I had small bowel obstruction from adhesions. It is now 7 years later and I am now in acute pain. I have had every test out there. Scoped up and down. CT scans of many and xrays. Now all the Dr will do is give me 2 kinds of pain pills. I have seen 2 surgeons. The second one wanted me to go for a thoracic MRI just thinking that I may have a pinched nerve in my upper thoracic spine area. I did not do this as she herself was just throwing this out there. I believe the
    adhesions are back with a vengeance. I fear that anyday I will suffer an obstruction again and I will be put off and the worst scenario kwill happen. For now I sit with my heating pad and continue the pain meds.

  • Patrice // May 20, 2012 at 10:22 pm

    I can so relate to what everyone has written about this terrible disorder.. I too have been in horrific pain due to adhesions. I had 2 surgeries in 2011 for scar tissue. My first surgery for adhesions was in January 2011.. At that time my surgeon said my entire abdomen looked like a spider web. He was in there for over 3 hours removing it. I stayed overnite in the hospital and was released the next day to go home. In April 2011 I began experiencing severe abdominal pain once again. I returned to my PCP and he had a CT scan performed. The radiologist said there appeared to be an internal hernia, once again I head to my surgeons office, although he does not see in the scan what the radiologist says he has seen he sets me up for emergency surgery the next morning. Upon going inside he finds more scar tissue and inflammation. By November I am in pain once again, my surgeon refers me to a Gastroenterologist, who decides the best route for me is to take Amitriptyline (he wants to trick to my brain into thinking I am not in pain).Needless to say this is not the solution for me. Here it is May and I am once again in horrible pain. I am taking pain meds just to be able to function for small periods of time. Will be seeing my PCP again tomorrow and see what he reccomends.. Not ready for more surgery but not sure how much more pain I can endure. Thanks for letting me vent.. I know you all understand and can relate to what I am talking about.

  • Thomas // Jul 29, 2012 at 7:24 am

    All I can say is that I have been through all of the above for the last 17 years. My Dr. who knows anymore surgery is life threatining to me is now trying to get rid of me. He is well aware of my problem additionally knows there is a foreign object floating around the abd cavity however when the suegeon attempts surgery he does a MRI just before and finds out he now can’t locate it so surgery is put off. The surgeon knows entering my abdominal cavity is life threatining. additionally my pain management doctor is aware of all this.
    To shorten all this I can tell you I have suffered terribly and the only relief is the pain medication I have taken for the past 5 years. However now my pain doctor is trying to dump me. His entire attitude toward me has changed and he continues to change the one medication that has helped me to a medication that causes me more problems and does nothing for the pain, when I try to explaine this to me he does not care or listen to me. I at this time don’t know what to do. Can you offer any ideas to help? Suffering in Canton, Ohio
    Thanks, Thomas

  • Dixie // Aug 8, 2012 at 12:40 am

    Hi, I was sitting down here crying i just had my 4 surgery to removed adhesions, I am so tired of the pain, and I am still in pain, I just don’t know what to do, i just want to be normal, I try to explained it to my family, they just don’t understand, my Surgeon Doctor is not compassionated, he just gives me pain medicine, I think I need to see a Therapist, I going crazy, I am getting depressed, and still in pain, I can’t keep a job, I applied for ss benefits waiting, I need to work to take care of my family, I will be homeless if I don’t get a job soon, but it is hard because I be so sick and in pain, that I missed days, please somebody tell me what to do

  • Annalisa // Aug 11, 2012 at 6:46 am

    Dixie, hold on ! Its going to be okay . Please , do not give up! I know it’s difficult and easy for me to say. But, I have been in pain and in and out of work too. Just know that in the meantime you can go to your local church ask for help emotional, and financial. If you can’t then go to your local food pantry for assistance there might be help with your bills to call 411 that is a connection to the united way they can help you find help. You can get free counseling , and qualify for a number of grants. Also, you can get help filling out your ss disabilty forms through the united way. If you can not find help I can say it is easy to fill the forms out with the help of a nurse at your dr.’s office. Hope you find someone to help you. Good luck and God bless you. I do care about you and know your feelings of hopelessness – just know it gets better!

  • rhonda // Aug 23, 2012 at 2:55 am

    Long story short. I have had seven abdominal surgeries. 2 surgeons stated the wouldn’t work on me again because I am a mess(severe adhesions). I guess what I want to know is how do you get dr’s to listen to you. I am in pain. Not only that but back in July my back inflamed the mri showed disc profusion. The Dr sent me to physical therapy but upon looking at my surgical history the pt said that he believed the adhesions are adhering to my spine and thatis whatis causing back problems. PT also said because I have mesh(because I got a hernia from all the surgeries) the can notngo in and break the adhesions up. Anyone heard of that? Any suggestions.

  • Desi // Sep 11, 2012 at 6:55 pm

    Hi Dixie, Randall and to all of you. I feel your pain and your anxiety/depression. It’s been 2 years since I last posted here. I have steered a new course comprising of some pretty strong pain relief when I need it and am trying to live with my problem as if I have surgery it will entail removing a large portion of bowel, it is all stuck to my abdominal wall too, and my surgeon tells me it will be very dangerous surgery, and cannot guarantee it won’t kill me. I go through so much pain, and someone else said here, how they wish for one day free of pain. I say the same thing myself. I don’t take the pain medication daily, reserving it for the worst days. Just recently I have been experiencing obstructions which resolve themselves at least a couple of times a week and manage this at home with sips of water, pain relief, and cross my fingers. I can pinpoint this site as I get very loud gurgling like blowing a straw into the bottom of an empty milkshake container in unison with the painful cramps. On the opposite side I have continual pullling pain and occasional obstruction. I saw my surgeon yesterday and off to have another colonoscopy to make sure there is nothing else going on. Years of low fibre diet he says can contribute to other problems like diverticulitis or bowel tumour so we have to rule that out.

    My surgeon has been with me for nearly 20 years and is very sympathetic and up to date. We have used Seprafilm, good for a while, but as always problems pop up in other areas.
    He has actually said with sincerity how sorry he feels for me. He knows I fear the surgery and he does too. We will cross that bridge after this next exploration.

    However, I still feel I want to pursue the path of pain relief rather than surgery, and am wondering if I should see someone skilled in pain management. I get around my low fibre diet, by making good healthy decisions and avoid cake and biscuits as much as I can but know that we can get hungry without fibre, but suffer if we eat it.

    Until recently I feel I have managed at times to put the pain into a little pocket subconsiously, accepting that it is part of me. Some days are harder than others, and wish that my coping mechanisms were better. So I try not to beat myself up if I have a weak day, take the pain medication and ride through it. I am one who gets bored and feel like I have wasted a day though, which is very frustrating to me.

    In earlier times, I really feel that I was not prepared for what was ahead of me. I still think some Drs are incapable of good communication. They tell you what they think you need to hear. Telling you that adhesions only recur with more surgery so try and avoid it, doesn’t give you the right information. Telling you simply that you need to learn to live with it, is not good enough. It leaves you feeling like you’ve just wasted THEIR time. They need to explain in DETAIL the ups and downs of surgery, fully explain your diet, how pain management can help, to think seriously of it as an alternative and give it a go. Tell you how they know you are experiencing terrible pain and believe you when you say you need pain relief and not feel like a whinger. Of course, unresolved obstructions always need surgery, been there many times and prayed I didn’t need it.

    If I can get through the bad days and cope with the pain through good pain management, that’s my preference now.

    We are not alone and believe that other people should respect the complex nature of this debillitating condition.

  • Lynn // Sep 18, 2012 at 7:51 pm

    Kathie – I want to know what people are taking too. What works and what doesn’t???
    Also, please know that with most, if not all barriers, they absorb into your body
    1) Hope your body accepts the barrier
    2) as it aborbs that nothing haywire chemically within your system
    3) at the point after it is absorbed… adhesions come back
    ** It has been apx 10 years since I had a barrier placed, Adhesions are back with a vengence. Took me awhile to realize(accept) what was going on and then one day I doubled over as I was doing something… oh that was I a pain I remembered well (the adheshion has wrapped a muscle and nerve – the way I bent over… was like a sharp knive …
    10 years ago one of the best ways of pain relief were shots.. now let me tell you.. they were painful themselves. But it relaxed the muscle and gave the nerve room. Unfortunetly what happens is that for whatever reason the length of time the shots/pain med works is less and less.. within a year, I am usually done and begging for surgery. I had Endo and then adhesions..
    As far as doctors go.. Don’t let them say it’s in your head .. keep going to other doctors .. keep pushing. Also know, that they may finally see one or realize “something is there” once you have surgery, they are usually larger and wrapped around more than anticipated..
    Shoot .. copy these blogs put them under your doctors nose and ask them to refer you out. You are your own best advocate. Don’t be bullied.

  • Desi // Sep 22, 2012 at 5:09 pm

    Kathie & Lynn. This is what I do re pain management currently. I have two types of pain, pulling and obstruction. So I will refer to each separately.
    Pulling pain. This exists as a “soreness” most of the time. The Dr can examine me at this spot any given time and will result in me jumping off the table when he does. When it is just sore I either take nothing or take a milder prescription medication, Digesic – Combined Paracetamol & Destrophropoxyphene, then progress to stronger medication Panadeine Forte – combined codeine & paracetamol. Then finally when very bad take Endone – Oxycodone Hydrochloride. Unfortunately this pain can last several days with lots of rest before it settles. I cannot even stand my underwear pressing on this spot so I have my loose “undies” for these days especially.
    My Dr says I should be in hospital, but as I know I am not obstructing I don’t go most of the time. When I get repeated bad episodes over a few weeks sometimes I give in to it and go to private emergency dept who admit me through my surgeon.

    For the obstruction pain when it happens, cramping & severe pain I get on the left side which is apparently still small bowel with me, it has been proven many times that even Endone does not touch the pain therefore in the few couple of hours of this occurring I don’t bother to take anything at all, there is no point. No point as we all know that anything that is codeine based slows up your bowel and constipates you which is not a good thing when you are having an obstruction. If the obstruction clears, it’s like the dambusters happening (my Dr’s description which I thought was pretty spot on) I am still left with some smaller spasms but my bowel feels like someone has twisted my whole insides until the pain settles – this can be several hours. I then take pain medication as I feel pretty wrung out – Endone firstly in this case and as it eases up downscale to Panadeine Forte. If it doesn’t clear I definitely have to go into hospital.

    When I take Endone or Panadeine Forte for the pulling pain, I need to also take stool softener and extra laxatives to help avoid constipation.

    If the pain for either reason does not settle within several hours and is still at a high level, my Dr wants me in hospital so that they can administer Morphine injection under the skin which apparently administering this way (not intra-muscular) does not constipate patients like us. I hate these, they hurt, but at least it means better pain control.

    And then we all cross our fingers that it settles and we don’t need surgery!

    I live in Australia, so I don’t know if you get those medications in the US, but I am sure you would have equivalent.

    I am going through a bad patch at the moment as having obstructions at least one or two a week which eventually do clear, but do wonder how much pain is considered too much pain to put up with sometimes and wonder what on earth the solution is. I think nothing and that can be pretty depressing sometimes, so I make the most of my better days and try to not let it get me down. I feel like I need some help with coping mechanisms to help overcome the lifestyle this presents. I find myself cancelling so many things I’d like to go to, it is life interfering. I have been officially “retired” for several years now, as I am too unreliable to hold down a job. I’m 54 and have had this problem for 30 + years. Lucky I studied art when younger and have turned to that as my saving grace. It is meditative but also have managed to make a living from it, and can schedule it into my life on my good days. There’s a painting frenzy going on on those days! :)

    Hope this helps.

  • Desi // Sep 22, 2012 at 5:26 pm

    Thomas, you sound like me. Any more surgery for me is also life threatening. I haven’t seen a “Pain Management Dr” but believe I need one as I wonder if I can do better.
    I cannot help but think we certainly do need coping mechanisms as this condition is so frustrating.
    I don’t know what others here think, but I feel because people cannot see it and that it is actually a scar tissue disease the average person thinks there is nothing wrong with us. I’ve had people tell me at times, well at least you don’t have cancer you should be glad it’s nothing like that. Well yes I am glad it’s nothing like that, but it is something else not to be taken lightheartedly either. It is debilitating and life-long in our cases, years of suffering with no cure that can be offered.
    It’s a pity here that posts cannot be directed to our emails because we cannot be updated by others about their experiences or ideas that could help.

  • Pat // Oct 11, 2012 at 8:47 pm

    Coping with pain: I’ve dealt with adhesion pain for over 25 years, my pain is felt on the pelvic left side. I can’t say if this will help you but it has helped me. I take Elavil, at the lowest dose possible, and only when the pain feels unbearable. Elavil is an anti-depressant but the Dr. explained to me that it can work to “trick” the brain into not feeling pain. I also try to keep my bowel healthy, I have taken probiotics, I take Superfood greens in fresh whole fruit juice daily (you will need a Vitamixer for this). I live with daily pain that is tolerable but when I feel the pain starting to escalate I will do a bowel cleanse. I would say this works about 80% of the time to lower the pain. Many years ago I had Physical Therapy to break up the adhesions, this helped a little but enough that I would consider doing it again. Last but not least, I pray and I have others pray for me. Do not forget the power of prayer! I’m thankful there is now a place where people with this problem can find help and understanding. I hope this can be of help to someone.

  • Desi // Oct 15, 2012 at 7:23 am

    OK, apart from the pain issues, does anyone have awful trouble with extensive bloating whenever you eat anything, even if it is no or low fibre, or even just milky fluids?

  • Lana // Oct 25, 2012 at 12:41 pm

    I was wondering does anyone know of a doctor who can actually help with this in or around Dayton Ohio area. I had a surgery for endometriosis last yr and an oopherectomy , the doc ended up perforating my small intestines. I then ended up with pertonitis ,septic and now all of my organs (I was told are stuck together from adhesions. I have been to Ohio State and Cleveland Clinic , I am not even sure who to see or what to do. I feel like there is no one to help!

  • How to Cope with Pain // Oct 25, 2012 at 12:46 pm

    Lana, Cleveland Clinic pain service is excellent. I don’t know anyone else in the area. Anyone else?

  • Bruno // Nov 9, 2012 at 11:24 am

    Twelve years ago I had a bowel resecction. They
    removed sixty per cent of my rectum and a foot of my colon. All because the GI Doctor failed to tatoo the cancerou polyp. Less radical surgery would have been performed. I have been suffering from adhensions ever since. I am contimplating surgery to cut the bands. What has help is MIRA LAX every day.

  • Lisa // Dec 18, 2012 at 11:19 pm

    I would love the email addresses of some of these people as I need people that understand what I am going through. I also suffer horribly with adhesions to the point where I want to die. If I could have a support network of people that I could talk with that would be great. I feel so alone with this situation. My friends don’t understand what I am going through or the pain. I have had at least 11 surgeries for blockages and adhesions. This sucks! My life was normal for about 3 years now it is pain every day to the point of wishing I was dead. I take no pain medication. I am not sleeping from the constant pain. I wonder why I am still here on this earth like this. Heaven is my home some day. What a glorious day that will be. NO MORE ADHESIONS! I will be whole again. So please any one who would like to share there e-mail address with me would be great! Thanks and my prayers are with everyone here going through this hell!!!! Peace and prayers!

  • How to Cope with Pain // Dec 19, 2012 at 6:51 am

    Lisa, you might also want to check out some of the chat areas at the national pain foundations websites. They have moderated chats specically for the reason you write about – to connect with others and not feel so alone.

  • Angie // Dec 27, 2012 at 7:06 pm

    I’m getting prepared for the start of my visits to clear passage as they’ve expanded their practice to Colorado now. The distance thing was the only thing holding me back from going a long time ago. Years of unexplained pain. Being told I was crazy. Drug seeking. You name it. Finally the adhesions got so bad that on one of my V.ultrasounds ,despite the fact that past ultrasounds showed “a healthy uterus”‘, I was diagnosed with a bicornate uterus. This prompted a lap. Thank God. I’m not sure how a medical professional explains a normal uterus a year prior and then all of a sudden a bicornate uterus. As if by some sort of spontaneous splitting uterus. Highly unlikely. But up until the laparoscopic procedure, my doctor convinced me and himself that he must have just missed the diagnosis the first two ultrasounds. He never admitted any oversight to the fact that he should have considered adhesions. Upon completion of the diagnostic lap, it ended with an adhediolysis for significant adhesions wrapping around my uterus so tightly that it managed to nearly sever it apart, which was why it appeared on the VU result that I had two uteruses. It was not until this point that he admitted that I must have truly been in a lot of pain. And in pain I was. But now, years later, I know in my whole heart and soul that the adhesions are back , now wrapping themselves around my bowels for I can not have a normal BM which is very rare for me. I’ve lost 25 lbs in the past year. Bringing me to my 7th grade weight of 105. My IBW being 125-130. I suppose much of my weight loss is due to the fact I am too scared to eat much or eat solid foods. For the pain afterwards is unbearable. I am in child bearing years and would love a family but I know in my heart and soul again that the adhesions are blocking my Fallopian tubes. My same doctor will not acknowledge any of these symptoms or complaints, and I am back again to the drug seeking status. Which mind you, not once have I gone in asking for pain meds. Not once. They hear the word pain, and assume. It’s as if they also truly hear me asking for pain meds. Even charting as such when again, not once, have I asked for them.
    So I am now taking matters into my own hands and am scheduling my visits with clear passage. Very excited. I have been blessed with an education in the medical profession so it is easy for me to understand the ins and the outs and all the medical jargon. I can not imagine how frustrating it must be to go to these appts and not understand any of the truth or the bs the doctors spew. But one thing stands certain, our medical professionals need to be our voices. They need to start acknowledging this. But money talks. Not until all the adhesion patients stop giving so much money to the medical profession and instead to places like clear passage, will they start listening. Right now, adhesions bring in more money than most other ailments. Why would they want to find solutions? They will not. Not until we adhesion sufferers start going to more non traditional practitioners and stop feeding the medical coffers. All you do when u schedule another surgery is ensure a repeat visit or two or three for these greedy medical CEO.s. I believe with everything after much research that physical therapy and manual manipulation is the only way to the path of wellness. At least until the industry starts listening to us and starts the finding and research protocols to get a barrier method approved. And one that is actually effective. That will take years even when it does get approved to be researched. Right now, there’s only one place to go with a fairly decent percentage of success, but it is in Germany. And that is not realistic nor an option with insurances for most people. I don’t know about you, but I work. And I work hard. I own 2 businesses and taking off for Germany for such an extended period of time, depleting my bank account, is not an option. I think I will save that time and money and book a 6 week stay on a boat in the Caribbean or a tour of Europe once I am feeling better post PT:) I finally, for the first time in years, have a positive outlook for my prognosis:) and positive thinking alone is half the battle. It does release feel good hormones that no medication or drug can mimick no matter how synthetic or how natural it may be. There’s nothing quite like the real thing. Good luck to you all. I hope many can at least consider what I’ve written and stop feeding these greedy people and start rewarding places like clear passages for their ongoing continued efforts to truly help us. Because it is these groups that are light years ahead of our traditional medical profession. Even the health insurance companies have woken up, have seen results which ends up costing far less cash overall. So they will now cover these PT sessions. Of course, it does take a bit of help on the patients part. But it will get easier and easier the more we speak out. Thanks for listening.

  • Tamara // Jan 29, 2013 at 2:46 pm

    Can anyone tell me please? I had a hysterectomy in 2001, due to ovarian cancer. Recently, the end of 2012, I have been experiencing low left side abdominal pain. I went to the urologist — he did blood tests, cystoscopy and a CAT scan. No reoccurrence of cancer or anything else he could see. He believes it is adhesions. Really, 11 years later?

  • Jackie // Feb 17, 2013 at 11:03 am

    I can’t believe how similiar all your stories sound to what is happening to me now. I had early problems with abdominal pain around 12 or 13 years old which was never diagnosed, but I was lucky the pain went away.

    In my thirties I had an ovarian cyst removed, a gallbladder removed, and a partial hysterectomy later. Recovery always took me longer than normal. One doctor seemed to get mad at me because I needed an extension on my leave from work. Another one laughed at me because I was hunched over in pain. He thought I was faking.

    However I was able to carry on a normal life until October 2011 when I had a colonoscopy. Two days after the procedure my abdomen bloated to twice its size and the pain was unbearable. Now the story is the same as everyone elses. I was in and out of doctor’s offices, emergency rooms, every test they could think of and when the tests showed nothing I was labeled with constipation and given prescription for laxatives. They also told me to eat fiber which made pain and constipation worse. I finally learned to eat low fiber foods and at least I am not in the hospital. However, I was forced into early retirement because of the constant pain. Nobody has mentioned adhesions, but now I have something to take to my doctor.

    Recently, I thought I was making progress towards recovery until I accidently lifted my granddaughter after she hurt herself. Now the pain is back and I don’t know how to get it calmed down again. Spend most of my time on couch watching TV to not think about my problems. It is comforting to know others out there with the same symptoms so that now I know I am not crazy and it is not something I did wrong to have this happen to me.

    Thank you.

  • Diana // Feb 24, 2013 at 2:38 pm

    I just recently ‘stumbled’ onto this website while doing more research on pelvic adhesive disease. I was diagnosed with this disease in 2008.
    I was originally diagnosed with endometriosis after my first and only child in 2002. I had a partial hysterectomy (left one ovary) in 2004 to try to better ‘manage’ the endo. Thus began years of pain/surgery/medication and suffering.
    I found a massage therapist who specializes in adhesive disease and has years of experience dealing with this bothersome and painful disease. She does deep tissue treatment and is able to help (temporarily) with the pain. She is the one that turned me onto cold pressed castor oil wraps. She believes the cold pressed castor oil actually penetrates and starts to desolve the scar tissue. I have not had enough experience with this treatment yet to know if it actually helps or not, but at this point I’m willing to try just about anything for relief. I figure it can’t hurt.
    Just this last summer I was experiencing a ‘new’ pain in my abdomen and symptoms were presenting in a different way than usual so I scheduled an appt with my gyno. As many of us know, our body knows when something is different and out of sorts… After examination, an ultra sound and later an MRI, they found a mass on the ovary that was left from my hysto. My dr had told me after the last adhesive repair surgery that he would not operate on me again unless it was life threatening. After a very long discussion with the dr and my family we decided to operate again to rule out ovarian cancer.
    The dr removed my very enlarged and adhesion-incased ovary, released my intestines (once again) from the inside of my ribs and abdominal wall and sent his findings to pathology. The mass was actually endo that was penetrating and growing into my ovary (not cancer).
    I am now 35 years old, 5 months post op (8th surgery to date) and on hormone replacement therapy.
    I had hoped this last surgery would give me some long awaited relief. Within 3 months of surgery, my pain was back.
    Dealing with chronic pain is exhausting and takes its toll on EVERYONE around you. I have found the less stress in and around my life has reduced some of the symptoms. I’ve promised myself to not depend on narcotic pain relievers to cover up the pain but instead seek out more homeopathic remedies. I continue the deep tissue therapy and I try to exercise as much as possible to keep new scar tissue from attaching (hopefully).
    It’s a long tiring road but with a good support system and a positive outlook I get up and get on with my life one day at a time!

  • emilie // Mar 17, 2013 at 8:00 am

    Hello. Tyou to everyone for have speak up about this painful issue of pain . I suffer for 20 Years .Use every day Pain Killer. Make my life mysery. With low stomach pain and low back pain.. I wish someone come up with an end to this painful life. STOMACH PAIN.
    Tyou for read me.

  • Becky // Mar 28, 2013 at 8:24 pm

    Thank you! I am not crazy. As many of you have said, I stumbled upon this site and have been reading excerpts com my life. 2.5 years ago I had exploratory gym surgery for chronic abdominal pain which found the adhesions. Now pain is back…same area. Very frustrated with drs. My current dr has suggested pelvic therapy which I guess I will try, but something to take the edge off the pain would be fantastic.

  • Shannon // Apr 3, 2013 at 11:34 pm

    Hey everyone. I have adhesions from surgery a year ago. You know how it goes. I received a TON of help from physical therapists that do ‘myofacial release’. They have also given me a lot of exercises to do to strengthen my core muscles and relax my psoais (?) muscle, all which counter the adhesion tension.

    Forget doctors: find physical therapists, massage therapists and Doctor’s of Osteopathy that specialize in ‘visceral manipulation’. And if one doesn’t work, try several. It took me two tries with the physical therapist, first try with the masseuse (she practices the ‘Mayan Technique’ massage), and a physical therapist who helped me regain strength.

    There might be things you can do that have nothing to do with pills or surgery. My best to you all!

  • Lynda // Apr 6, 2013 at 11:12 pm

    I just found this website because I am desperately seeking help with my pain. I am 48 years old and have had suffered with adhesion pain for twenty four years. I have had about a dozen abdominal surgeries throughout the years including c-sections, a hysterectomy (they took one organ a year for three years), and adhesion lysis. In 2003 they went in to remove my right ovary and my appendix and my husband was told the surgery would be less than two hours. After three hours the doctor came out to the waiting room to ask my husband if he was sure I had an appendix. Apparently it looked like cob web city in there. They finally found it and the surgery was close to seven hours allowing me to wake up with an NG tube, a drain in my stomach and bowels that had been manipulated so much they thought I was going to need a colostomy bag. I know one surgery leads to another but my pain was so bad that I was getting a “clean up” every year or two. Now the last time anyone went in was about eight years ago. I have done everything I can to handle the pain, but it has won. I can barely walk, lost my job due to time missed and my health insurance right along with it. Visits to the ER result in a few hours of pain relief because they pump you full of medication but if they do not find a bowel obstruction you are sent on your way home. The other night I went at 3AM and the doc seemed so concerned. She was right on top of getting me meds, into CAT scan, commented about my distended belly and promised me we were going to get me some resolution–then shift change and new doc said “no blockage, here’s a script, follow up with your GI”. I am so depressed I am nearly suicidal and have spent hours talking to my best friend and husband about what I do have to live for. What you also need to know is a little back story, prior to the adhesion pain I suffered several years of gyn problems that no doc could figure out and it turned out I had adenomyosis (endometriosis inside the uterus). Now I feel like no one believes me, and I feel very alone. My husband and one of my three sons are as supportive mentally as they can be, I guess, but my friends are “over it”. I have not had anyone come visit, offer help (my husband has Parkinson’s and my youngest son is the only one living home and he works), or just call and chit chat on the phone. I have the personality that is a little compulsive–I like a clean house, my bay window is decorated for every holiday, I like to entertain, and when I work I am very dedicated (I have never lost a job for not doing my job just for not being able to get there). Sitting around in pain is literally killing me. I have tried chiropractor, pain management, recently Reiki and some yoga. I just don’t know what else to do. I don’t want to be doped up all the time. Anyone have any suggestions to live with this?

  • Soni // Apr 7, 2013 at 1:07 pm

    It’s really heart-wrenching the kinds of lives we’re forced to live because of this pain. I had my last major surgery 8 years ago and still suffer with painful adhesions. I find that I get a little relief with muscle relaxants and massage therapy.

  • kay // Jun 6, 2013 at 1:57 pm

    I’ve had help from my chiropractor using infra red laser. He runs it over my abdomen and it breaks up the adhesions. I’ve spent thousands of dollars trying to get help and so far this seems to be working.

  • Ingrid4 // Jul 18, 2013 at 8:19 am

    Hello I shall keep this brife. I to suffer from adhesive obstruction. I have had only three ops. I have just come home from hospital. I was in for 10 days. The pain went and they sent me home. I cant believe how weak I feel. I was quite fit till I went into hospital. I now have a bad what pain in my right side and a burning in my tummy. I now have to take laxatives to have a bowel movement. I am not sure if that is the right thing to do.
    I am 74 years of age. Sorry about spelling
    Ingrid

  • Maria // Jul 19, 2013 at 2:28 pm

    Hi I’m 48, abdominal surgery in 2006 , now intestine twist/obstruct/kink from adhesion just below the stomach leads to bouts of incredible pain, vomiting, etc as all you know. I have read through everyones posts while having one of these adhesion ‘attacks’. I have a few things that might help, and an article on the use of Magnesium, Simethicone and Acidophilus that I have found helped me stay out of the hospital more often than not.
    I need to say in response to one post, Pilate core work, and strenuous exercise is a sure thing to bring on an attack for me, it makes my intestine dance too much and brings on an attack. But, other than that it’s a mystery as to what triggers it. I can’t find a pattern. Pat wrote about an anti depressant (if it helped with pain I will take it) but bowel cleanse would make the intestine ungulate more causing more spasms. Deep tissue therapy worries me for the swelling it causes, leading again to an attack, though breaking up scar tissue makes sense, as does light exercise, when I do easy, calm, relaxing yoga classes it seems like these attacks don’t happen so often. KAY wrote about her chiropractor/ Infra red laser, to break up adhesion/scar tissue, if it’s working, I will absolutely do it. I hope you will post more about it! In the meantime, I have a pill called Buscopina, it’s a anti spasmodic and if taken at the very tiny first sign of pain, it has stopped the attack all together, but, if too late, it doesn’t help. I am waiting to hear back from a Med Rep friend who says there is something new coming on the market specifically dealing with adhesions, I will post any information I get from him :) Here’s my list of what I found has helped me probably have less attacks than most people; 1-Ginger syrup from Whole Foods for the stomach (it’s an into inflammatory), calms everything, 2- aspirin anti inflammatory, 3-Buscopina taken very early in smallest sign of attack. 4-Magnesium, acidophilus capsule, and Gas X early on as well. READ this article on the Magnesium combo for bowel obstruction and how it may help keep you out of hospital.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1277043/

    Also this one for open surgery candidates….

    http://www.seprafilm.com/patients/about-seprafilm/what-is-seprafilm.aspx

    I am looking forward to anything new on how to never have this pain in life again, Lasers, pills, supplements, etc, anything….just not more surgery :)

  • Staci // Aug 26, 2013 at 3:12 pm

    I have been suffering from addominal adhesions since 2011. I have been thru a complete GI work up with everything being normal. I was in and out of the ER for severe pain so much they told me I was drug seeking. It was after my hysterectomy in Jan 2013 that my doctor finally diagnosed me. Before the OB GYN could do my surgery, she had to take 30min to cut away adhesions to get to my female organs. I had a baseball size cyst on my left ovary that prompted the surgery. Now I can’t find a surgon to go in and clean out the rest of the adhesions. I live in severe pain. I do take strong pain meds, but I don’t want to live like this forever. If anyone can help me find a willing surgon in the San Antonio Texas area it would be a god send. Another issue is I am disabled and my only insurance is Medicare. My doctor told me that because the adhesions have such a high rate of growing back it was going to be hard to convince Medicare to pay for the surgery. Has anyone else had this problem? All information would be appreciated.

  • Anna Martignetti // Sep 24, 2013 at 1:26 pm

    I JUST got back from Clear Passages Physical Therapy in Gainesville, Florida and I can honestly say it completely changed my life. I feel like I’m living in someone else’s functioning body and can’t believe it’s mine :)

    At 24, I’ve spent the past 14 years in pain and feel like I have my life back. I have exhausted all other options here and can honestly say this is worth every penny.

    For your reference I have:
    endometriosis, Celiac Disease and have had two abdominal surgeries (appendicitis 2000, exploratory surgery which removed adhesions (and created more new ones!) in 2011). I was told I would be “cured” after 2011 surgery only to be in more pain and be diagnosed with Frozen Pelvis by Clear Passages.

    I’m happy to answer any questions you might have- Anna.Martignetti@gmail.com

    All the best,
    Anna

  • Julie B // Oct 2, 2013 at 11:19 pm

    I have been having abdominal pains since the age of 13 and I am now 23 years old (10 years). From the ages of 13 to 16, the pain I was experiencing were constant ovarian cysts; physicians would send me home with some anti-inflammatory medicine and tylenol 3’s or tell me to deal with it. At the age of 19, I was having severe abdominal pains and went to the hospital 6 times, twice by ambulance, only to be told by doctors that it was “all in my head” and that I was faking the pain for “attention”. Until, finally, the surgeon did a laprascopic surgery only to find that I had a ruptured cyst on my right ovary as well as an appendicitis. By the time they took it out, I spent 6 weeks in the hospital with a large abscess needing IV anti-biotics and Morphine every 6 hours for pain.

    Then in July of this year, 2013, I went to emerge with severe abdominal pain with another cyst on my right ovary. They were afraid the cyst was twisted and obstructing the blood flow to the ovary so 4 days later the gynecologist did a laprascopic surgery only to see a lot of adhesion and noticed I had 2 cysts on the ovary. She was only able to drain one cyst because the other one was wrapped in adhesion. I had so much adhesion she was not even able to see my pelvis, my uterus and fallopean tubes. On September 17th, she was forced to do a surgery to open me up due to too much pain. Once I was fully opened up, it was worse than she thought. The surgery was supposed to last a total of 2 hours and lasted 5 hours. It took her 2 hours alone to remove all the adhesion on my right hand side; once the adhesion was removed she had no choice but to remove my right ovary and right fallopean tube due to swelling and blockage. my left side is bad as well. I have 3 cyst on my left ovary but my ovary is too sticky too do anything right now; she doesn’t think my left tube is open because of the adhesion and i also still have lots of adhesion behind my uterus pulling and tugging. I have been back to the hospital 3 times since surgery, admitted for 3 days one one occasion. So after surgery I am back at the beginning with severe abdominal pain, and I am FED UP. One gynecologist came to see me recently in hospital and told me “Adhesion’s don’t hurt.” I told him “You are a terrible doctor than; until you have Adhesion’s attaching themselves to your organs and you are suffering with the pain, you have no right to come here with your stuck up attitude and telling me this.” i realize it may have been rude but as I said before I am FED UP and it is MY health and I am NOT taking any more BS from doctors telling me I’m faking, it’s in my head, it doesn’t hurt and there is nothing there because I am the one losing everything I am the one suffering. I LOVE this site because I realize I am not alone and makes me feel a sense of belonging. So I thank you all for posting your stories because it is helping my emotional state! Much love and good luck to you all!

  • Riennika // Jan 17, 2014 at 4:10 pm

    Anna,

    I want to try clear passage but it is not cheap. It’s also a commitment to go to the locations for a week.

    I had abdominal surgery to remove mass from duodedum. After surgery I have so much pain on one side I think it’s adhesions.

    I tried visceral manipulation and myofacial massage for nine months as well as oesteopath but nothing has worked.

  • Georgia // Feb 3, 2014 at 12:49 am

    Hi, I came across this site by accident looking up some familiar abdominal pain and am shock to see that this problem is no further along since my episode back in 1986. I read many of your blogs and can relate to all of you. I am now 64yrs old but I too had all the same symptoms, pelvic pain, dreadful periods and infertility. Yes it was a severe case of endometriosis with cysts fibroids and adhesion sets. All of the above. I suffered like all of you from age 16 to age 35 when I had my total hysterectomy. My surgery lasted 9 hours with two surgeons working on me. I was lucky to have a wonderful smart doctor who foreseen the complexity of my problem and called in a good friend of his who was the top GYN for oncology gyn in one of Philadelphia top hospitals Jefferson. All female reproductive parts removed including an already infected and rotted appendix, small parts if the small and large intestines. But here I am I survived . Recovery took almost a year and the healing was extremely painful. Remember that all that exposure and cutting will take months for nerve endings and muscles to reconnect. I had no estrogen for at lease 6 months and I was put on a s medication that is given to women who have their uterus removed due to cancer. I cannot remember the name but the surgeon insisted on prescribing it to me due to the endometriosis . He explained at that time that any part or cells from endometriosis will enhance the adhesions again so the medication prevents the growth of endometrium cells. I must say I was a very lucky girl to have Ben in the hands of two great doctors. Yes adhesions grow back , there are meds which can help the bowel pain . I take Liberax . It is a colon relaxer and a nice heating pad or hot bath sock loosens the tightness of any new adhesions. Also when the pelvic area is sore I take Arz for bladder pain Otc it relaxes the bladder. Now for the surgeons and all the fuss with them making us feel we are crazy? Of course they ALLknowbetter. They most certainly are aware of this problem but really have you ever heard of a Adhesion Surgeon Specialist? I haven’t because there is none. Doctors have EGO or they would it be doctors especially surgeons. There are Heart,Lung, Kidney,GYN, Ostopedic, Throat, Eye, Neuron Surgeons ….but have you ever heard of an Adhesion Surgeon? I haven’t and trust me it is a dirty, difficult and non fulfilling job in the medical field. And to top it especially now a days the doctors have to prove with test and MRI s the reason for surgery and we ALL-know adhesions do not show on test. So,this is a double whammy for Drs to deal with and ourselves, I have family in the medical field Nurses and hear from them the drs hate to perform adhesion surgery due to all of the above and in most cases surgery is performed once the patient is in so much pain that there is no recourse.
    I would love to be part of a group if there are any formed to help support this health problem and the fact it is not recognized as a serious problem. I too went through the “in your head” accusations andallmanyofyour blogs talked about

  • Annette // Feb 14, 2014 at 2:22 am

    I have read all your notes and I am not sure if I have adhesions or not. How do you know if that is what you have? I have had this stomach pain for about four years now. At the time it started, I had gone thru some very stressful times. I have been to at least five different doctors, every test you can imagine, and still no one can tell me what the pain is from. And, yes, sometimes you feel like it is in your head. I can do everything, and if you didn’t know I had pain, you would think I was fine, but I live with this pain every minute of every day. Sometimes it is stronger than other times. I have had at least three or four surgeries in my lifetime, I am 62 right now, so I don’t know if it is adhesions or not. I am getting ready to go in for my second scope to see if anything has changed. Very frustrating and sometimes depressing. But it is nice to read that others suffer from unknown stomach pain also. Thanks for listening.

  • Trish // Jul 12, 2014 at 10:07 am

    I am 44 years old and have 14 surgeries to date including colon resection and hysterectomy plus 2 adhesion surgeries plus many more. In 2011 I suffered for over a year with pain on my lower left side. I to had numerous tests and found nothing. I kept trying to ignore it almost wishing it away. Finally I could no longer stand it. It affected my everyday. I had the surgery and adhesions had completely twisted my intestions. They put a mesh to help prevent them but only 2 months later was back in for another surgery. Moving forward the pain is back. It comes and goes like a horrible pulling pain and it keeps me up at night. I’ve been back to the dr and actually went for a second opinion which he made me feel crazy. He referred me to “pain management”. Really? I’ve been down this road before and know this pain!! My problem is I’m afraid they will go in and find nothing and then I will be crazy!! So I keep prolonging it.

    I left there feeling like he thought I was making it up or that I enjoyed surgery. I do not want another surgery but cannot live like this. I don’t know what else to do. I am trying to wish it away again but I know where I’m headed. Any advice or suggestions would be appreciated. What is adhesion barrier? Is this the mesh they put in?

  • Carole // Jul 15, 2014 at 10:32 am

    Like the rest of you poor people on this site I am at my wits end. I have had a laparoscopy in the past for endmetriosis then a few years later after a ongoing battle with the medical professions had an ovarian cyst removed on the right hand side was well for five years but then pain returned with a vengeance. Scans showed adhesion and a kink in the bowel which hospital removed but three months later and another two visits to the er am still in pain and struggling to get back to work as I live on my own and have no where to go if I can keep up the rent. Due for follow up post op appointment in four weeks time but not confident of any better outcome. I live in the UK but can anyone suggest any homeopathic remedies for pain relief.

Leave a Comment