Stats & Facts about Pelvic Pain
Stats and Facts about Pelvic, Genital and Sexual Pain Robert J. Echenberg, MD Chronic pelvic and genital pain is an immense public health problem in the US (estimated 30 million women and unknown numbers of men) because of the pain and suffering of so many, but also the waste and expense of so many unnecessary resources on these patients who invariably are sent from specialist to specialist -often without specific diagnoses- and subjected even further to numerous invasive and expensive diagnostic and therapeutic procedures Many of these young women in their reproductive years are undergoing exploratory surgeries, many of which are showing no findings to explain their pain, and sometimes reproductive organs are removed and the pain is worse than ever. Furthermore, very few pelvic (urology, gynecology and GI) practitioners are being trained adequately in the assessment and management of CPP and genital pain disorders in their residencies and/or fellowship programs (there are 2 text books on chronic pelvic pain and most programs do not even use these texts) The pelvis is the "busiest" part of the body - in that the lower urinary, lower bowel function and the reproductive tracts are functioning 24/7 during the reproductive years - and structurally the pelvis tends to take the most punishment mechanically throughout life in all physical activities. Any significant injury to the pelvic region cannot easily be rested or "splinted" since we use the fulcrum of the trunk on the pelvis for almost every physical activity continuously Studies indicate that close to 90% of women with CPP also have significant genital and pelvic related pains during sexual activities, or any vaginal penetration with tampons, speculums or even light touch to the vaginal opening. So 1/6 to 1/5 of reproductive women have some degree of sexual pain - often starting at a very young age - which can hamper their lives significantly for years into their futures. CPP also takes so many women and men out of the workplace for periods of time because of symptoms, surgeries, and invasive procedures, thus becoming a major source of lost productivity. CPP commonly leads to emotional, psychological, and financial stress, and most commonly to inter-relationship issues . There are an estimated 15 million women with Generalized Vulvodynia/Vestibulodynia in America and possibly 15-20 million women suffering from variable degrees of Interstitial Cystitis/Painful Bladder Syndrome - and so many of these women are being treated endlessly for 'yeast and urinary tract' infections - often without appropriate cultures and without success. Persistent genital arousal disorder (PGAD) is relatively rare and is commonly an extension or subset of vulvodynia affecting the branches of the nerves coming from the pudendal nerve - especially the dorsal nerve to the clitoris which acts like a persistent neuropathy causing feelings of arousal or burning, aching, and severe pain when there is no reason for sexual arousal. It is a pain disorder and not a sexual disorder. Just as in all of the other genital and sexual pain issues associated with CPP in general, PGAD patients find it very difficult to find any health care professional who can adequately diagnose or treat this disorder. PGAD can actually be treated somewhat effectively if diagnosed properly, treating all the triggers (which may involve bladder, bowel, or gyn dysfunctions), treating the neuropathy with nerve blocks to the pudendal nerves, pelvic physical therapy, and mind/body relaxation techniques - just like treating any other genital pain disorder. Vestibulodynia is by far the most common reason for "entrance dyspareunia" as well as pain with use of tampons and gynecologic speculum insertions. Common dermatoses of the skin in the female genital region also account for pelvic and sexual pain symptoms. Early recognition of Lichen Simplex, Lichen Sclerosis, and Lichen Planus including knowledgeable treatment can make very significant differences in the course of CPP and lower genital pain. The vast majority of specialists in the pelvic region do not take into account the Pelvic Floor Dysfunction (clenching of the core muscles deep in the pelvis) that invariably accompanies CPP and becomes part of the pain itself. Spasming of these muscles can lead to orgasmic pain or other "sudden Charlie Horse" type lower abdominal pains that are mistaken for ovarian cysts or other "female" disorders, and muscles, nerves and ligaments are just not thought of in most young women as the actual causes of their recurrent pains. There are growing numbers of specialized pelvic floor physical therapists in the US who are knowledgeable about these disorders and who are an instrumental part of the appropriate therapy for all of these patients. Experience and pain science is showing that cumulatively, traumas throughout our lives are "remembered" by our nervous and muscular systems and as in PTSD, any simple reminders of these traumas can "trigger" off similar "fight or flight" responses, sometimes much later on in life - both "good" traumas (playing competitive sports, dance, cheerleading, etc.) or "bad" traumas (accidental injuries, surgeries, childbirth complications, abuse, etc.) - all can lead to "imprinting" in the central and peripheral and autonomic nervous systems and can later affect chronic pelvic pain quite severely. More males are now being discovered to have CPP secondary to many of the same predisposing factors as we see in women. Most of the nerves, muscles and ligaments in the pelvis are common to both genders. Sexual dysfunctions, including diagnoses of lack of desire, lack of pleasurable response, lack of orgasmic response, and sexual pain have long stayed in the psychiatric nomenclature - we feel that sexual pain should be in its own category as a Pain Disorder and not a sexual or psychiatric disorder), and that genital pain disorders are largely responsible for the other 3 sexual dysfunctions. Every major pain organization has recommended that chronic pain of any type be assessed, managed, and followed by a multi-disciplinary team of practitioners including adequately trained medical specialists, physical therapy, mind/body care, emotional counseling, and any other integrated personnel needed for an individualized care program. This recommendation is especially true for chronic pelvic and genital pain disorders. Prevention can and should be a major goal at many different levels. Much more funding is needed to adequately study the many variables that contribute to chronic pain in the pelvic region. Robert J. Echenberg, MD, FACOG
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