Endometriosis, Adhesions-Related Disorder or CAPPS? - The problem from the patient's perspective.

Sooner or later, every endo patient who goes through surgery will learn a new word - adhesions. In addition to whatever pain the endo is causing the very fact of surgery will expose the patient to new pain and possibly bowel obstruction from adhesions.

Together with patients with adhesions from other causes, the endo patient is sentenced to a life of more surgery, seeking relief from pain and bowel problems and all the attendant family, employment and social problems. Hysterectomy may solve some problems, but may increase the chances of new ones arising.

Since its formation in 1996, the International Adhesions Society (IAS) (Adhesion.org) has been focusing on adhesions from the perspective of the patient. Dr. David Wiseman, its founder, has recently published the results of innovative research, "Disorders of Adhesions or Adhesion-Related Disorder: Monolithic Entities or Part of Something Bigger - CAPPS?", which will forever change the way the problem of adhesions is viewed.. In fact it should also change the way endo, as well as the related conditions of interstitial cystitis (IC) and IBS are also managed.

The paper was published after Dr. Wiseman was invited to submit a manuscript for inclusion in a special volume of "Seminars in Reproductive Medicine" and is entitled: "Disorders of Adhesions or Adhesion-Related Disorder: Monolithic Entities or Part of Something Bigger - CAPPS?"

The problems of patients suffering from adhesions are not just about adhesions. Recognising this the IAS coined coined the term "Adhesion Related Disorder" (ARD) to include the entire complex of pain, infertility, obstruction, nutrition, psychological and social issues that ARD sufferers and their families experience. But "ARD" inadequately captures the problem. The ARD patient is part of a much larger group of patients who, in varying degrees, combinations and sequences experience a range of symptoms and conditions including endometriosis, IC, IBS, bowel obstruction and chronic abdominal and/or pelvic pain.

Like patients who may have started out with a diagnosis of  "adhesions," IC or IBS, the endo patient will likely develop related conditions rendering them almost indistinguishable from patients with multiple symptoms originating from other abdominal or pelvic conditions.

It now becomes obvious that an endo patient cannot be treated merely by cutting out the endo. Even if we could assure that the endo will not return, the chronic nature of the disease means that they will continue to suffer from pain and other pelvic symptoms. Knowing that most or all of the patient's problems are interrelated, it becomes essential that we treat the patient as a whole, and not merely as a collection of individual body parts that can be "fixed" by gynecologists, urologists, surgeons, gastroenterologists etc. separately. Lest we fall into this trap, Dr. Wiseman advocates the use of the term "Complex AbdominoPelvic and Pain Syndrome" (CAPPS) to include the related and overlapping conditions such as Endo, Chronic Pelvic Pain, IC and IBS. This way a patient should be directed to integrated multidisciplinary diagnoses and treatments.

Commented Dr. David Wiseman: "This paper represents a great milestone for the IAS and adhesions.org. We could not have conducted this work without the collaboration of the thousands of patients who have visited and supported us over the years. We have gone from a small web site to the foremost authority on the subject of Adhesions Related Disorder. Counted among our achievements are the pivotal role in the establishment of an ICD9 code for adhesion barrier placement; the declaration of resolutions in over a dozen State legislatures, the establishment of the world's first dedicated CAPPS clinic and, most importantly, the bringing of hope and comfort to thousands of ARD sufferers and their families around the world."

As president of Synechion, Inc., a consulting and research company, Dr. Wiseman is one of the world's experts on the science and business of adhesions.

An abstract and scientific citation of the article, indexed in PubMed (www.ncbi.nlm.nih.gov/pubmed/18756413) is reproduced below. The full article is made available here, (CAPP's) with the kind permission of Thieme Publishers.

Wiseman, David M.: Disorders of Adhesions or Adhesion-Related Disorder: Monolithic Entities or Part of Something Bigger - CAPPS? Seminars in Reproductive Medicine 2008; 26:356-368
The purpose of this article is to review progress in the field of abdominopelvic adhesions and the validity of its two underlying assumptions: (1) The formation of adhesions results in infertility, bowel obstruction, or other complications. Reducing or avoiding adhesions will curb these sequelae. (2) "Adhesions" is a monolithic entity to be tackled without regard to any other condition.
Evidence is discussed to validate the first assumption. We reviewed progress in the field by examining hospital data. We found a growing trend in the number and cost of discharges for just two adhesion-related diagnoses, and the low usage of adhesion barriers appears in at most 5% of appropriate procedures. Data from an Internet-based survey suggested that the problem may be partly due to ignorance among patients and physicians about adhesions and their prevention.
Two other surveys of patients visiting the adhesions.org Web site defined more fully adhesion-related disorder (ARD). The first survey (N=466) described a patient with chronic pain, gastrointestinal disturbances, an average of nine bowel obstructions, and an inability to work or maintain family or social relationships. The second survey (687 U.S. women) found a high (co-) prevalence of abdominal or pelvic adhesions (85%), chronic abdominal or pelvic pain (69%), irritable bowel syndrome (55%), recurrent bowel obstruction (44%), endometriosis (40%), and interstitial cystitis (29%).
This pattern suggests that although "adhesions" may start out as a monolithic entity, an adhesions patient may develop related conditions (ARD) until they merge into an independent entity where they are practically indistinguishable from patients with multiple symptoms originating from other abdominopelvic conditions such as pelvic or bladder pain.
Rather than use terms that constrain the required multidisciplinary, biopsychosocial approach to these patients by the paradigms of the specialty related to the patient’s initial symptom set, the term complex abdominopelvic and pain syndrome (CAPPS) is proposed.
It is essential to understand not only the pathogenesis of the "initiating" conditions but also how they progress to CAPPS. In our ARD sample, not only was the frequency of women with hysterectomies (56%) higher than expected (21 to 33%), but also the rates of the "initiating" conditions was 40 to 400% higher in patients with hysterectomies than in those without. This may represent increased surgical trauma or the loss of protection against oxidative stress. Related was the higher frequency of ARD patients reporting hemochromatosis (HC; 5%) than expected (~0.5%) and the higher rates (20 to 700%) of initiating conditions in patients with HC than in those without HC. Together with findings related to the toxicity of Intergel, these findings raise the possibility that heterozygotes for genes regulating oxidative stress are at greater risk of developing surgical complications as well as more severe and progressive conditions such as CAPPS.