A Patient's Guide to Adhesions and Related Pain
A Patient's Guide to Adhesions and Related Pain
Chronic pelvic pain and/or associated intestinal disturbance are a major cause of misery for thousands of patients. Often in constant pain, the patient experiences loneliness, hopelessness, frustration and desperation with thoughts of suicide. Family and work relationships are strained to the limit. Although ADHESIONS are often (but not always) the cause of this pain, treatment for adhesions is not performed either because the surgeon does not believe that adhesions can cause the problem, or because lysis of adhesions is considered too difficult or futile.
Adhesions are an almost inevitable outcome of surgery, and the problems that they cause are widespread and sometimes severe. It has been said by some that adhesions are the single most common and costly problem related to surgery, and yet most people have not even heard the term. This lack of awareness means that, excluding infertility, many doctors are unable or unwilling to tackle the problems of adhesions, many insurance companies are unwilling to pay for treatment and many patients are left in misery.
This paper describes adhesions, their treatment and their relationship to pain and bowel obstruction. In addition, stories from patients are featured to illustrate how adhesions (or suspected adhesions) affect their daily lives and how they cope with a sometimes-insurmountable problem.
A key lesson and source of comfort for patients with this problem is that they are not alone and the importance of mutual support among patients cannot be underestimated.
There are no easy answers as yet. In drawing attention to the human side of this problem, we hope to (begin to) educate patients and doctors about the range of treatments available, be they of a medical, surgical or psychological nature. In addition, the establishment of a group to provide support and information to adhesions sufferers is proposed.
What Are Adhesions?
The Magnitude of the Problem of Adhesions
Adhesions and Chronic Pelvic Pain (CPP)
Treatment of Adhesions
Treatment of Chronic Pain
Some Success Stories: Room For Hope
Conclusion: You Are Not Alone
Are You Interested in Forming an Adhesions Support Group?
Links to Sites of Interest
Subj: PLEASE HELP ME. I AM AT A LOSS!!!!
This e-mail I am hoping against all hope gets to Dr. David Wiseman. I am a 38 year old woman. Here is a little about my history:
1978--Perforated Ulcer Surgery
1981--Bowel Obstruction Surgery
1982--Kidney Stone Surgery
1986--Perforated Ulcer Surgery (Again)
1986--Ovarian Cyst Surgery
1987--Gastric Resection Surgery
1989--Bowel Obstruction Surgery
1992--Bowel Obstruction Surgery
I am now in Pain all the time and have massive amounts of ADHESIONS and all the doctors tell me there is NOTHING that can be done. The doctors tell me to chew my food better and to eat less often. I weigh 125 pounds and am in pain all the time. I hate to eat that is the worst pain of all. My husband and two children would like their mom and wife to be in some kind of a comfort zone. can you PLEASE help me. I am getting at my wits end. I am still young and would like to be able to live my life. My work, my family and I am all suffering. PLEASE
Unfortunately, this letter is typical of the many email messages I receive from patients who are desperate to be relieved of their pain and suffering due to ADHESIONS. Another typical story was posted a while ago on one of the many message boards around the Internet.
Subj: ADHESIONS/pelvic pain
I am about to face my fourth surgery for pelvic ADHESIONS. The first one, 9 years ago was a clean-up laparotomy for endometriosis. This was followed by continued pain and an eventual complete hysterectomy 3 years ago. Then pain free for a few months. Then back to the same old pain. Another surgery 11 months later for severe ADHESIONS. (Bladder adhered to stomach wall, colon, bowel, etc. all stuck together-apparently quite a mess) That was 13 months ago and now after severe pain has returned a CT Scan has revealed a cyst (or something) the size of a softball. I am due to have surgery in a few weeks to remove it. Has anyone else had similar problems? What can be done to prevent these ADHESIONS from re-occurring? My body can not continue to have surgery year after year…..If anyone has any suggestions please e-mail me or post here on this board. Thanks.
Permeating my email as well as message board postings are feelings of desperation:
"I am at the end of my rope…...I am tired of living my life in pain"
"I almost don't want to bother with additional tests; there seems to be no hope for me and I am at the end of my rope, barely hanging on by a thread. I need HELP - is there ANYTHING I can do to have a life that has quality?? How can I get relief? PLEASE - any info you can give me would be extremely valuable. I need to know that I don't have to live the rest of my life this way. thank you."
and sometimes suicide:
"For the suicidal thoughts I have thought of them but have come to realize that suicide is not the escape"
Patients often report that they are told that their pain is a figment of the imagination:
"I have been told I'm a wimp, it's all in my head"
"Remember doctors are taught A+B=C. Any diversion from this is in 'the patients head"
Thoughts about the medical profession range from quiet resignation:
"There are no doctors who can really help me."
"It seems that every time a member of the medical profession gets their hands on me,
I come away with less and less"
to open hostility and mistrust:
"My doctor would rather have me suffer in pain. Most doctors don't understand pain, and refuse to treat it. Why must we suffer? Pain should be treated with strong pain medication. I have spent far too much time laying on heating pads, in bed, suffering excruciating pain. Why should people suffering in pain go to Jack Kervorkian to end their pain forever. Doctors are irresponsible, and insensitive."
especially towards male doctors:
"Find a female GYN with a brain who will understand what you mean when you say 'pain'.
If men can't feel it -- they don't 'get it'."
Many report the human cost of their ADHESIONS or suspected ADHESIONS:
"A lot of relationships have also been ruined simply because I was unable to be there because of the extreme pain that I have been experiencing. Adhesions DO CAUSE PAIN!! It has been a 28 year ordeal for me. and it is still not over. My faith in doctors has been shattered."
"My Husband is so understanding that I feel guilty often for depriving him of intimate times (because of pain). It is so hard on him because he knows that if there is any activity below the belly button and above the knees that it will usually make me bed ridden the following day in pain."
The frustration with the lack of a treatment for adhesions and the agony of their affliction is tempered by the camaraderie of fellow sufferers, as in this message board posting:
"Subj: Scar tissue and adhesions
I have been suffering from this for 10 years now and I am happy that I am not alone (well not happy but you know!) I have been put through the mill with the testing and dr's and all the famous diagnosis and I still have not found a solution. Why is this? They can put an artificial heart into a human but they can't get rid of ADHESIONS! Pain meds are taking there toll on me and I still have not found any relief. If anyone can offer any advise for me please do so."
This brings us to the reason for this article:
- What treatments are currently available?
- Is there something more we can do for ADHESIONS sufferers?
- Before we attempt to answer these questions, let's make sure we understand something about ADHESIONS.
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What are ADHESIONS?
An ADHESION is a type of scar that forms an abnormal connection between two parts of the body. Adhesions can cause severe clinical problems. For example, adhesions involving the female reproductive organs (ovaries, Fallopian tubes) can and do cause infertility, dyspareunia (painful intercourse) and debilitating pelvic pain. Adhesions involving the bowel can cause bowel obstruction or blockage. Adhesions may form elsewhere such as around the heart, spine and in the hand where they lead to other problems.
Adhesions occur in response to injury of various kinds. For example, non-surgical insults such as endometriosis, infection, chemotherapy, radiation and cancer may damage tissue and initiate ADHESIONS. By far the most common kind of ADHESION is the one that forms after surgery. ADHESIONS typically occur at the site of a surgical procedure although they may also occur elsewhere.
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THE MAGNITUDE of the PROBLEM of ADHESIONS
The rate of adhesion formation after surgery is surprising given the relative lack of knowledge about ADHESIONS among doctors and patients alike. From autopsies on victims of traffic accidents, Weibel and Majno (1973) found that 67% of patients who had undergone surgery had adhesions. This number increased to 81% and 93% for patients with major and multiple procedures respectively. Similarly, Menzies and Ellis (1990) found that 93% of patients who had undergone at least one previous abdominal operation had adhesions, compared with only 10.4% of patients who had never had a previous abdominal operation. Furthermore, 1% of all laparotomies developed obstruction due to adhesions within one year of surgery with 3% leading to obstruction at some time after surgery. Of all cases of small bowel obstruction, 60-70% of cases involve adhesions (Ellis, 1997).
Lastly, following surgical treatment of adhesions causing intestinal obstruction, obstruction due to adhesion reformation occurred in 11 to 21% of cases (Menzies, 1993).
Between 55 and 100% of patients undergoing pelvic reconstructive surgery will form adhesions.
The impact of adhesions as a complication of surgery is huge. In the United States (1993) 347,000 operations for lysis of peritoneal adhesions were performed (Graves, 1995), of which about 100,000 involved intestinal adhesions. Estimated another way, 446,000 procedures were performed in the U.S. to lyse abdominopelvic adhesions in 1993 (HCIA, 1994).
In 1988, there were about 280,000 hospitalizations for adhesions, the economic cost of which was estimated conservatively as $1.2 billion per year (Fox Ray et al., 1993).
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ADHESIONS and CHRONIC PELVIC PAIN (CPP)
ADHESIONS are believed to cause pelvic pain by tethering down organs and tissues, causing traction (pulling) of nerves. Nerve endings may become entrapped within a developing adhesion. If the bowel becomes obstructed, distention will cause pain.
Some patients in whom chronic pelvic pain has lasted more than six months may develop "Chronic Pelvic Pain Syndrome.” In addition to the chronic pain, emotional and behavioral changes appear due to the duration of the pain and its associated stress. According to the International Pelvic Pain Society:
"We have all been taught from infancy to avoid pain. However, when pain is persistent and there seems to be no remedy, it creates tremendous tension. Most of us think of pain as being a symptom of tissue injury. However, in chronic pelvic pain almost always the tissue injury has ceased but the pain continues. This leads to a very important distinction between chronic pelvic pain and episodes of other pain that we might experience during our life: usually pain is a symptom, but in chronic pelvic pain, pain becomes the disease."
Chronic pelvic pain is estimated to affect nearly 15% of women between 18 and 50 (Mathias et al., 1996). Other estimates arrive at between 200,000 and 2 million women in the United States (Paul, 1998). The economic effects are also quite staggering. In a survey of households, Mathias et al. (1996) estimated that direct medical costs for outpatient visits for chronic pelvic pain for the U.S. population of women aged 18-50 years are $881.5 million per year. Among 548 employed respondents, 15% reported time lost from paid work and 45% reported reduced work productivity.
Not all ADHESIONS cause pain, and not all pain is caused by ADHESIONS.
Not all surgeons, particularly general surgeons, agree that ADHESIONS cause pain. Part of the problem seems to be that it is not easy to observe ADHESIONS non-invasively, for example with MRI or CT scans. However, several studies do describe the relationship between pain and adhesions. According to an early study (Rosenthal et al., 1984) of patients reporting CPP, about 40% have adhesions only, and another 17% have endometriosis (with or without adhesions). Kresch et al., (1984) also studied 100 women and found ADHESIONS in 38% of the cases and endometriosis in another 32%. Overall estimates (Howard, 1993) of the percentage of patients with CPP and ADHESIONS is about 25%, with endometriosis accounting for another 28%. These figures must be understood in their context, and I recommend highly Howard's article.
It is important to recognize that emotional stress contributes greatly to the patient’s perception of pain and her/his ability to deal with the pain. Rosenthal et al. (1984) found that of the patients in whom a possible physical cause of pain (including ADHESIONS) could be identified, 75% had evidence of psychological influences on the pain.
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TREATMENT of ADHESIONS
Despite doubts as to the relationship between ADHESIONS and pain, several studies show that lysis (cutting, adhesiolysis) of ADHESIONS provides some relief.
In a study in Germany (Frey et al., 1994) 58 (40 female, 18 male) patients with chronic abdominal pain underwent laparoscopy. Other than adhesions, there were no abnormal findings. The ADHESIONS were then cut (adhesiolysis) and the patients’ pain was assessed up to 30 months later. There was a complete remission of pain in 45% of the patients, with 35% of patients reporting a substantial improvement. Pain persisted in 205 of the patients. Similar figures were reported by a Swiss group (Mueller et al., 1995). American surgeons such as Steege and Stout (1991) and Daniell (1989) have also reported improvement in pain after adhesiolysis. In a Dutch study (Peters et al., 1992), only patients with chronic pelvic pain and severe adhesions benefited from adhesiolysis.
If there is an underlying cause of adhesions, such as endometriosis or infection, then clearly this must be treated. A full discussion of endometriosis is well beyond the scope of this paper, and I thoroughly recommend visiting the Endometriosis Association web site for more information.
The problem with adhesiolysis is that ADHESIONS almost always reform, and so the procedure is sometimes self-defeating. This is one of the main reasons why surgeons are reluctant to perform adhesiolysis, particularly in severe cases. In addition, the presence of adhesions makes surgery more hazardous, because of the risk of injury to the bowel, bladder, blood vessels and ureters. As we have seen, some patients may have periods of relief from and/or bowel obstruction for several months, only to have the problem recur, as in this email I received:
I have come back from the [Famous Hospital], the GI specialist said that they were 10 - 12 years from knowing how to treat this problem. I still run into allot of MD's who say adhesions don't cause pain, but since I have had 7 surgeries and each time adhesions are "taken down" I get about 1 years worth of pain relief. I have even showed them research studies that show a decrease in pain s/s after surgery and they still are skeptical. Anyway, they are sending me to a Dr. XXXX who supposedly specializes in this kind of pain. I hope to have an appointment at the end of April. I'll let you know how it turns out. Keep me informed of any developments that might be helpful with my case. Thanks"
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For over 100 years, surgeons have tried to use drugs and other materials to prevent adhesions (Wiseman, 1994) from occurring or recurring with little success. Such materials have included animal membranes, gold foils, mineral oil, silk, rubber and Teflon sheets and even the amniotic membranes (membranes which surround an unborn baby). These materials are placed at or near the site of surgery, rather like a wound dressing. Other exotic treatments have included ingesting iron filings and then moving a magnet around on the abdomen to keep the bowel moving and prevent it from sticking. When the tissue has healed, there is no longer a danger of forming adhesions.
Recently, scientists have been successful in developing effective absorbable adhesion barriers that protect tissue and dissolve when they are no longer needed. To date, the only products specifically approved by Food and Drug Administration for use in humans are INTERCEED™ Barrier, made by Johnson & Johnson, and Seprafilm™ made by Genzyme Corporation. INTERCEED™ Barrier has been shown to be efficacious in gynecological surgery and Seprafilm™ in certain types of gynecological and general surgery. However, the use of INTERCEED™ and Seprafilm™ is still limited for a variety of reasons and they do not prevent adhesions every time. Furthermore, neither product has been rigorously tested on patients with severe recurrent ADHESIONS such as the ones described in this article.
Another product, PRECLUDE™ made by WL Gore, is made of Gore-Tex, a version of Teflon™. It is not specifically approved to reduce adhesions, although some doctors use it for this purpose. It does not dissolve in the body and many doctors like to perform a subsequent surgery to remove it. Today many surgeons still instill large volumes of crystalloid, or salt (saline) solutions into the abdomen in the belief that these alone will reduce adhesions. This premise is not supported by clinical data.
Other products are currently undergoing clinical testing such as ADCON™ P (Gliatech), REPEL™, and INTERGEL™ (formerly LUBRICOAT) (LifeCore Biomedical). These however may not be available in the USA until at least the year 2000.
Sepracoat, made by Genzyme, is only available in Europe because limited effectiveness was seen in US clinical studies.
It is important to note that whatever product is used, it must be combined with good surgical technique in which the surgeon handles tissues as delicately as possible, attempting to avoid further damage to them. Powder-free gloves should be used whenever possible because of the association of talc (no longer used), and even starch used to lubricate the gloves, with adhesions.
It is unlikely that any one product will completely prevent ADHESIONS in all situations. There thus remains a need for an improved product that works in a variety of surgical situations and works in a greater number of patients.
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TREATMENT of CHRONIC PAIN
A full discussion of this subject is outside the scope of this article and I would recommend visiting the World Congress on Pain, International Pelvic Pain Society and the Endometriosis Association for more information. The American Society for Reproductive Medicine has an excellent booklet on pelvic pain which is worth reading. The first step towards treatment is of course diagnosis, and your doctor will take a history, examine you and possibly conduct some tests, in an attempt to determine the cause of pain. These tests may include a laparoscopy.
In limiting my remarks to patients in whom ADHESIONS are believed to be the cause of pain, I will start out by saying that there are no easy answers. There may not be a cure for the pain, but it may be controlled to a more acceptable level. For reasons stated above, adhesiolysis may not be the answer and may not even be the first choice. I would certainly ask your doctor if s/he might consider an adhesiolysis. If s/he was able to use an ADHESION barrier, s/he needs to read the product label to determine whether it is appropriate. If extensive adhesiolysis surgery is required, often a general surgeon will be (and should be) asked to collaborate with the gynecological surgeon. Pain mapping is an emerging technique where, under local anesthetic, the surgeon attempts to locate the focus of pain by prodding different areas within the pelvis. Sometimes pain is associated with adhesions, and sometimes adhesions (or even loci of endometriosis) do not appear responsible for the pain. If an endometriosis site is discovered and removed, this should be covered with an adhesion barrier.
I would also seek the counsel of a pelvic pain specialist who may suggest other treatments including trigger point injections, neuroablative procedures (where certain nerves from the 'source of the pain are cut) as well as drug treatments, physical therapy, exercise and dietary changes. In extreme cases where bowel function is disturbed, comprehensive nutritional support is a necessity.
Dr. C. Paul Perry has pointed out:
"It is very important that we have realistic expectations when dealing with chronic pelvic pain. The pain has occurred over a long period of time and will not go away in a short period of time. Your recovery will be a process. Many modes of therapy will be used over the course of your treatment."
The treatment of chronic pelvic pain is emerging as a multidisciplinary specialty. A team of nurses, psychotherapists, physical therapists, pain specialists, anesthesiologists, urologists, gynecologists and general surgeons working in a coordinated manner can mean maximum benefit for the patient. Not only is the problem of pelvic pain is receiving the attention is deserves, but the team approach to its management is being recognized as one with merit, as a recent conference attests.
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SOME SUCCESS STORIES: ROOM FOR HOPE
One of the biggest factors in the rehabilitation of the patient suffering from ADHESIONS seems to be the removal of feelings of loneliness. Participation in support groups and other forms of psychological support are a big help. Some patients have been prompted to lobby for more action on behalf of ADHESIONS patients. Such an example is Jill Eckman who recently wrote this letter to the First Lady.
Here are some happy endings (or at least beginnings) from my email correspondence: The email has been edited slightly with changes marked by [square brackets]. Some parts of the correspondence have been removed for brevity, as have all names to preserve anonymity.
CASE #1: ADHESIONS From Appendectomy: New City, New Doctor, New Diet
CASE #2: "Spontaneous" ADHESIONS
CASE #3: 28 Years and Still Going!
CASE #4: Jazzercize, Desperate but Educated!
CASE#5: Doctor Willing to Try ADHESION Barriers But Needs More Info
CASE #6: Relief From Laparoscopy including ADHESIOLYSIS
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CONCLUSION: YOU ARE NOT ALONE
Adhesions are almost an inevitable outcome of surgery, and the problems that they cause are widespread and sometimes severe. It has been said by some that adhesions are the single most common and costly problem related to surgery, and yet most people have not even heard the term. This lack of awareness means that many doctors are unable or unwilling to tackle the problems of adhesions, many insurance companies are unwilling to pay for treatment and many patients are left in misery. We are witnessing the beginning of a reversal of this situation as can be seen from a recent conference on pelvic pain.
If you are suffering from the effects of adhesions, I hope that you have learned that
YOU ARE NOT ALONE
Emotional stress plays a major role in the pain that ADHESIONS can cause. A good support network is essential and "a trouble shared is a trouble halved." Many patients have reported that by sharing their experiences with others, be it by phone, local support group or the Internet, their feelings of loneliness, abandonment and frustration have abated, engendering a healing frame of mind.
I have had a number of requests to start a patient support group for ADHESIONS sufferers (suggested motto: Let's Stick Together!!) whose goals would be:
- to share experiences and information
- to provide support and advice to is members
- to raise the level of awareness among doctors, healthcare providers, government, prompting them to provide more comprehensive and integrated care for adhesions sufferers
- to support scientific research into adhesions and their prevention
Please note that this article is not intended to provide specific medical advice. In all cases, an appropriately qualified medical doctor should be consulted about your condition and your proper treatment.
P.S. ARE YOU INTERESTED IN FORMING AN ADHESIONS SUPPORT GROUP? (click here)
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Ellis H. The clinical significance of adhesions: focus on intestinal obstruction. Eur J Surg Suppl 1997;5-9.
Fox Ray NF, Larsen JW, Stillman RJ, Jacobs RJ. Economic impact of hospitalizations for lower abdominal adhesiolysis in the United States in 1988. Surg Gynecol Obstet 1993;176
Freys SM, Fuchs KH, Heimbucher J, Thiede A. Laparoscopic adhesiolysis. Surg Endosc 1994;8:1202-7.
Graves EJ. National Hospital Discharge Survey: Annual Summary, 1993. 1995(Vital Health Stat; vol. 13(121)).
HCIA, Inc. National Inpatient Profile, 1994.
Howard F. The role of laparoscopy in chronic pelvic pain: promise and pitfalls. Obstet Gynecol Surv 1993;48:357-87.
Kresch AJ, Seifer DB, Sachs LB, Barrese I. Laparoscopy in 100 women with chronic pelvic pain. Obstet Gynecol 1984;64:672-4.
Mathias SD, Kuppermann M, Liberman RF, Lipschutz RC, Steege JF . Chronic pelvic pain: prevalence, health-related quality of life, and economic correlates. Obstet Gynecol 1996;87:321-7 .
Menzies D, Ellis H. Intestinal obstruction from adhesions--how big is the problem?. Ann R Coll Surg Engl 1990;72:60-3.
Menzies D. Postoperative adhesions: their treatment and relevance in clinical practice Ann Rev R Coll Surg Eng 1993;75:147-153.
Mueller MD, Tschudi J, Herrmann U, Klaiber C. An evaluation of laparoscopic adhesiolysis in patients with chronic abdominal pain. Surg Endosc 1995;9:802-4.
Paul CP. Cited in OBGYN.net - Special Pelvic Pain Symposium Report April 3-4, 1998
Peters AAW, Trimbos-Kemper GCM, Admiraal C, Trimbos JB, Hermans J. A randomized clinical trial on the benefit of adhesiolysis in patients with intraperitoneal adhesions and chronic pelvic pain. Br J Obstet Gynaecol 1992;99:59-62.
Steege JF, Stout AL. Resolution of chronic pelvic pain after laparoscopic lysis of adhesions. Am J Obstet Gynecol 1991;165:278-81; discussion 281-3.
Weibel MA, Majno G. Peritoneal adhesions and their relation to abdominal surgery. A postmortem study. Am J Surg 1973;126:345-53.
Wiseman DM. Polymers for the prevention of surgical adhesions. In: Domb AJ, Editor. Polymeric site-specific pharmacotherapy. Chichester: John Wiley and Sons, 1994: 369-421.
It is a pleasure to thank Jill Eckman for her help in compiling the many links we have given here. I would also like to thank all those patients who gave me permission to include their stories in this article.
The information provided here is not intended nor is implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition. State laws prohibit the practice of telemedicine without licensure in each state.
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