THANK YOU, Donald Unger. I could not have said this better myself.

My chronic pain isn’t a crime
By Donald N.S. Unger  FEBRUARY 03, 2015

I WILL BE in chronic physical pain until I die. I’m 53, and this has been true for more than half of my life. I accept it.

Pain medication is inadequate. But with it I am more consistently functional and can minimize being housebound, bedridden, or hospitalized. I can be a responsible homeowner, spouse, parent; I can work as a teacher, a writer, an editor.

I recognize that drug abuse and addiction are serious problems. But ever-tighter regulations, at both the local and national levels, are of dubious value in reducing them — while causing grave harm to those of us in chronic pain, to the overwhelming majority who take medication for appropriate reasons, with effective oversight.

We don’t talk about this much — “They’re-making-it-harder-for-me-to-get-my-drugs’’ isn’t exactly a winning public flag to fly.

I’ve never been arrested, found to be out-of-compliance, had a substance-related accident or hospitalization, but increasingly I am a suspect, treated less as a patient and more as a criminal.

I’ve been subject to drug testing — random-but-regular, bitterness rising — for longer than I can remember. I recognize valid public health concerns associated with taking pain medication: doctor shopping; mixing prescribed drugs, or street drugs, from a variety of sources; people who scam physicians into providing legal prescriptions, then sell the meds on the street. Initially, I didn’t think I would care.

But I do care. The feelings of humiliation and degradation don’t fade; they simmer.

My latest pain contract, presented as a requirement for obtaining care, included a demand that I appear, whenever ordered, before any practitioner in the health maintenance organization to which I belong, within an hour’s time, with my medication bottle in hand.

For a pill count.

How, exactly, is that supposed to work?

I have a job, a family, a life. I can’t carry around a bottle of prescription narcotics; the contract deems loss, theft, or damage as suspicious activity, and the pills would not be replaced. So I would have to interrupt teaching, go home, retrieve the pills, and report to a practitioner.

Within an hour.

I would rarely be able to do this, and when I could, doing so within an hour would usually be impossible. But in failing to comply, I would risk the revocation of my “pain medication license.”

Again, abuse of prescription pain medication is a serious problem; people are dying. But a vastly larger group of us are living — in unremitting pain, in the face of which we do the best we can to remain productive and independent, to benefit, rather than burden, our families and society at large. Most of us have accepted ever-more-onerous restrictions, no matter how humiliating — urination on command, guilty-until-proven-innocent — regardless of how they clash with American values and medical ethics.

Do we have a choice?

Well, sadly . . . yes. Street narcotics. They are broadly available, and they’re less expensive. There’s no oversight, and no humiliating urinalysis.

But is this the direction we want to go?

In Chronic Pelvic Pain, Consider Pudendal Neuralgia
by Clayton Simmons
ISSUE: JUNE 2010 | VOLUME: 8:06

Pudendal neuralgia may represent a promising, although complex, avenue for understanding and treating certain forms of chronic pelvic pain.

In a presentation at the annual meeting of the International Anesthesia Research Society in March, John S. McDonald, MD, chair of the Department of Anesthesiology at Harbor-UCLA Medical Center, Torrance, Calif., offered insights into the treatment of chronic pelvic pain (CPP) generally and urged physicians to be alert for pudendal neuralgia, an etiology that may be overlooked in evaluating patients presenting with this kind of pain.

CPP may signal a variety of conditions. Some are well known, such as endometriosis and interstitial cystitis. But pudendal neuralgia, which may involve damage to or compression of the pudendal nerve, can also cause CPP and is less well understood, Dr. McDonald told Pain Medicine News.

Differentiating pudendal neuralgia from other conditions can be challenging. When patients present with symptoms of CPP, many physicians use magnetic resonance imaging to identify causes such as endometriosis or ovarian cysts, and if present, to recommend surgery or other treatment, according to Dr. McDonald. Pudendal neuralgia, however, may coexist with these or other conditions, leaving persistent pain even after surgery.

Common symptoms suggesting pudendal neuralgia include pain when sitting and pelvic floor dysfunction, pain during and after sexual activity and bowel movements, and pain originating in the inferior hypogastric plexus together with frequent need to urinate, Dr. McDonald noted. In conducting a differential diagnosis, physicians must carry out a pelvic exam and often perform diagnostic pudendal nerve blocks, challenging procedures that may require consultation with a gynecologist. For this reason, Dr. McDonald suggests referring patients reporting CPP to a specialist in pelvic pain.

Several treatments for pudendal neuralgia exist. Anticonvulsants or antidepressants may be effective for this as for other neuropathies, and Dr. McDonald’s research indicates that local anesthetic nerve blocks represent another option. A 2000 study by Dr. McDonald of 26 women showed that repeated local anesthetic block of the pudendal nerve may relieve pain if appropriately placed (Obstet Gynecol 2000;95:306-309). Other physicians have explored surgical options, which aim to decompress the pudendal nerve.

Although the etiology of pudendal neuralgia is not entirely clear, research points to demographic risks and potential contributing factors. While prevalence in the general population is unclear, it is far more common among women than men, possibly because labor and endometriosis may damage the pudendal nerve. Among men, bicycle riders seem to be at particular risk, Dr. McDonald said, perhaps owing to poorly designed bicycle seats.

Animal studies indicate more detailed pathophysiology, although results require confirmation and further explanation. Reduced oxygen flow to the pudendal nerve may cause trauma associated with pudendal neuralgia, according to some research. A study in rats co-authored by Dr. McDonald and presented at the Western Anesthesia Residents Conference in 2007 indicates that pudendal neuralgia may lead to referred pain, which conceivably complicates the diagnosis in humans. In this study, innervation of the pudendal nerve seems to cause innervation that presents as bladder pain. “Symptoms like these may be labeled as interstitial cystitis” and be misdiagnosed, Dr. McDonald told Pain Medicine News.

Fred Howard, MD, associate chair of the Department of Obstetrics and Gynecology at the University of Rochester Medical Center, in New York, noted that pudendal neuralgia is “not terrifically well known” among physicians. It is, he agreed with Dr. McDonald, “a real challenge to diagnose.” Conversely, he cautioned that increased attention to its existence and characteristics may lead to overdiagnosis.

Dr. Howard stated that unilateral pain, especially when sitting, combined with hyperalgesia and allodynia, may be tip-offs to pudendal neuralgia. Interstitial cystitis presents with very similar symptoms, however, and he suggested that pelvic exams require a specialist’s expertise.

Per the KQED feed on facebook, “Are you one of the millions of Americans living with pain? Pain that affects your job or family? Health Dialogues explores the mysteries and complexities of pain, from the latest research to pain relief and the attitudes taken toward pain. Tonight at 8pm on KQED 88.5FM.”

Go to http://www.kqed.org/ – it is currently the cover story. There’s a link on the right to listen live.

An audio archive should be available on January 22, 2010 at http://www.californiareport.org/archive/R201001212000/