What is the PPOD Syndrome?
The Pelvic Pain and Organic Dysfunction (PPOD – pronounced P POD or “pea-pod”) syndrome is a very common, yet little known and routinely misdiagnosed disorder that is a frequent cause of a wide range of symptoms that include chronic pelvic pain and various disturbances of pelvic organ function. Caused by an atypical mechanical disorder of the spine, the PPOD syndrome is extremely variable in its clinical and symptomatic presentation. In total, there are nearly 4 dozen individual symptoms that fall within the parameters of, and contribute to the varying presentations of the disorder, and those who are affected may develop any number and any combination of any of these various complaints. For example, in some individuals, the primary complaints may be limited to pain at one or more regions of the pelvis, rectum or genital areas, while in other PPOD syndrome patients the symptoms can be much more extensive and severe, and include widespread pelvic pain and gross accompanying disturbances of bladder, bowel, gynecologic and sexual function (refer to the case reports for detailed descriptions of the various PPOD syndrome presentations and response to treatment).
Symptoms that contribute to and are commonly found in the PPOD syndrome patient include pelvic pain (inguinal, suprapubic, para-anal, coccygeal, rectal), urinary frequency, urinary urgency, urinary dribbling, urinary incontinence (loss of bladder control), urinary difficulty, urinary sluggishness, urinary retention (inability to empty the bladder), nocturia (nighttime urination), enuresis (bedwetting), dysuria (painful urination), urinary tract infection, loss of ability to perceive bladder filling, chronic or recurrent constipation, chronic or recurrent diarrhea, alternating constipation and diarrhea, dyschezia (difficult or painful defecation), excessive flatus (gas), anal sphincter spasm, rectal incontinence (loss of bowel control), mucorrhea (mucus discharge from the rectum), spontaneous bowel discharge, loss of ability to perceive rectal filling, spontaneous miscarriage (loss of pregnancy), dysmenorrhea (painful and irregular menstruation), vaginal spotting, leukorrhea (persistent vaginal discharge), menstrual migraine, vulvodynia (pain in the labia and clitoris), vaginodynia (pain in the vagina), orchialgia (pain in the testicle), phallodynia (pain in the penis), decreased genital sensitivity (numbness of the vulva or penis), anorgasmy (loss of ability to achieve orgasm), dyspareunia (pelvic pain with intercourse), deficient coital (sexual) lubrication, pelvic pain during orgasm (anorgasmalgia), loss of libido (sex drive), and impotence (erectile dysfunction).
Table 1. Mechanically Induced Pelvic Organic Dysfunction
One of the most difficult and frustrating aspects of this condition for the PPOD syndrome patient to endure is the repeated inability of their doctors to establish the correct diagnosis. One reason for this difficulty is that the condition is usually caused by an atypical, occult or asymptomatic mechanical disorder of the spine. Yet, in its clinical presentation, it manifests itself not with the typical spinal related symptoms of back and leg pain, but rather, in a wide range of seemingly unrelated complaints of pelvic pain and various disturbances of bladder, bowel, gynecologic and sexual function; symptoms, that cross the boundaries of several medical specialties and are of the type that generally are not recognized or thought of as being associated with a spinal disorder. As a result, depending upon the nature of the particular symptom or symptoms that develop, the PPOD syndrome patient invariably consults with a gynecologist, urologist, enterologist, or some type of internal medicine doctor, and usually ends up undergoing an array of diagnostic evaluations, multiple surgeries and a host of other procedures, only to find that, rather than improving, their condition usually progressively worsens over time.
TYPICAL HISTORY OF THE PPOD SYNDROME PATIENT
The “typical” PPOD syndrome patient is a man or woman of 20-55 years of age, although confirmed cases have been seen as young as 10 years of age and as old as 89. While either sex can be affected, women are more frequently involved. Not uncommonly, the PPOD syndrome patient is unable to associate the onset of their symptoms to any specific event. However, it is often times possible to establish a correlation between the onset of their initial PPOD symptoms or aggravation of pre-existing PPOD symptoms (in individuals with longstanding involvement) with some type of mechanical stress to the spine. Common examples include some type of injury or fall, pregnancy, or childbirth. Although many PPOD patients have a history of chronic or recurrent back pain, the back pain component of their overall disorder is often times overshadowed by the severe nature of their accompanying PPOD related symptoms. Interestingly however, the PPOD syndrome has also been found to occur in individuals having no history of back pain as well. In addition to the specific PPOD syndrome symptoms listed above, symptoms of fatigue, irritability, headache, neck and arm pain, as well as those associated with fibromyalgia are commonly found in the PPOD syndrome patient.
PROGRESSIVE NATURE OF THE CONDITION
The usual course of involvement is that of gradually developing symptoms of pelvic pain and/or pelvic organic dysfunction that tend to become more severe and numerous over time. Frequently, the initial PPOD symptom is that of pelvic pain which may develop at one or more regions of the pelvis. In some cases however, various symptoms of bladder, bowel, gynecologic and sexual dysfunction develop prior to the onset of any accompanying pelvic pain. When pelvic pain is the initial developing symptom, it is often initially confined to a rather specific or localized area within the pelvis. Although its intensity may fluctuate from day to day, over time it tends to become more severe and can spread to affect additional regions of the pelvis, pelvic floor, vagina, rectum and outer genitalia (labia, clitoris, scrotum, testicle and penis). As the syndrome progresses many individuals develop additional symptoms of pelvic organic dysfunction. These symptoms usually take the form of various disturbances of bladder, bowel, gynecologic and sexual function of the type listed in Table 1.
MANY TESTS AND MANY DIAGNOSES BUT FEW ABNORMALITIES
Gradually, as the condition worsens and changes its character over time (as additional symptoms develop and are added to the mix), the PPOD syndrome patient acquires a history of having consulted with one specialist after another and having undergone a multitude of examinations and specialized diagnostic studies. Given the nature of their various complaints, these procedures usually include studies such as CT scans, MRIs, laparoscopies, sonograms, cystoscopies, intravenous pyelogram, colonoscopies, proctoscopies, lower gastrointestinal imaging procedures, gastrointestinal transit studies, etc. However, in the vast majority of cases, despite having undergone exhaustive diagnostic evaluation, no specific disease process or pathology can be found. As a result, in the absence of a definitive problem, the PPOD syndrome patient is diagnosed and treated on a symptomatic basis. The various complaints are usually attributed to some type of nebulous “abnormality” which in the majority of cases reflects nothing more than a normal variation of anatomy. However, in the presence of pain this abnormality is viewed as being the cause of the patients complaints, and often times carries with it the implication that to resolve the problem treatment must be directed at correcting (read that “removing“) this abnormality. The usual end result of this process is a risky, ineffective and unnecessary surgery to remove a painful, although otherwise healthy, organ(s). But because treatment (surgery) had been directed at the symptomatic expression of an undetected underlying spinal disorder, the condition typically is not improved.
Over time, as the disorder worsens, each new symptom and subsequent evaluation leads to another diagnosis and the implicit presumption that the patient has developed a new and completely unrelated problem. In actuality however, rather than constituting a new and different problem these mounting “diagnoses”, in fact, represent nothing more than symptomatic descriptors of the varying clinical manifestations of an evolving undetected underlying disorder. Chronic pelvic pain, levator ani syndrome, pelvic floor myalgia, inguinodynia, proctalgia, cystalgia, vulvodynia, metrodynia, prostatodynia, orchialgia, etc., are all “diagnoses” that exemplify this point. These diagnoses are terms that literally mean, describe or implicate the presence of pain at some location in the pelvis, nothing more. These terms, however, do not identify or implicate any type of condition, factor, cause, or mechanism responsible for producing the pain. In other words, despite the differences in terminology, these diagnoses do not make any distinction between what might be at the root of the problem and causing pain in one area from that causing pain in another.
While on the surface this fact may seem little more than an academic point, for two reasons it is much more important. First, from a therapeutic standpoint, without knowing the underlying cause of a given problem any attempt at treatment can only be directed at trying to suppress the associated symptoms rather than resolve or correct its true underlying cause. Unfortunately, because of an almost universal lack of awareness, and understanding, of the PPOD syndrome (it’s recognition, diagnosis and treatment), this is the standard therapeutic approach followed by most doctors in treating PPOD syndrome patients today. Secondly, beyond the agony of having to cope with their physical deterioration, many PPOD syndrome patients have additionally had to endure years of emotional strain associated with the heavy psychological burden of being lead to believe that they have unwittingly become the unfortunate victim of an ever growing list of mysterious ailments that cannot be adequately explained or effectively treated. However, had their “conditions” been properly recognized for what they truly represent, these individuals would have been spared this burdensome anguish by the knowledge that their various symptoms reflect nothing more than the evolving clinical manifestations of a single underlying disorder, an atypical spinal problem.
While the process of submitting to multiple diagnostic tests and invasive therapeutic procedures is an extremely painful, expensive and frustrating experience to undergo for one symptom alone (i.e., chronic pelvic pain), it can be nothing short of devastating for patients who are repeatedly subjected to this exercise in a search to identify the cause of, and treat, multiple PPOD related complaints. Table 2 lists some of the commonly encountered symptomatic diagnoses (misdiagnoses) representing clinical manifestations that are frequently found in the mechanically induced PPOD syndrome patient.
Table 2. Common Diagnoses of the Clinical Manifestations of the Mechanically Induced Pelvic Pain and Organic Dysfunction Syndrome
AN UNFORTUNATE TRANSFORMATION: FROM A PHYSICAL PROBLEM TO A PSYCHOLOGICAL ILLNESS
The usual end result of this unfortunate scenario is that after having exhausted virtually every therapeutic option available, but continuing to suffer, the PPOD syndrome patient is then told that there is nothing further wrong (as all of their “abnormalities” have been treated), and that their ongoing problems are most likely “functional” or “psychogenic” in nature, or, related to “having children” or “getting older”. Accordingly, the patient is finally referred for psychological counseling and emotional support. Ravaged by the debilitating effects of their physical condition, the toll that multiple ineffective surgeries have taken, and the implication that their ongoing pain and functional impairment is “all in your head”, the PPOD syndrome patient begins to question their very sanity with respect to the reality of their condition. Physically and psychologically devastated and not knowing where to turn next, these individuals often resign themselves to the apparent belief that nothing more can be done, and end up biding their time within the confines of their physical limitations enduring a life of quiet desperation. Fortunately, there is now new hope for the mechanically induced PPOD syndrome patient.