Sometimes you pick up a book about your own chronic disease (which is such a pain in the ass that you don’t usually feel like reading about it), and you have a real holy sh*t moment.
I wouldn’t say I’m battling the bladder disease known as interstitial cystitis (IC), because that implies at some point, one of us will win or lose. This isn’t meningitis or one of those cancers with a halfway decent prognosis. IC is neither fatal nor curable, and we’ve been in a stalemate since I was diagnosed about twelve years ago.
I have written before about urologists and their technicians and my pet theory that they are all sadists. But a book by the Interstitial Cystitis Association, titled IC & Pain: Taking Control, helped me realize “sadist” really isn’t the right word, because doctors don’t enjoy my pain. Many of them just don’t seem to care about it.
But “Epidemiological studies reveal…that IC patients score worse on quality of life measures than patients with end stage kidney disease on dialysis.” Later, on the severity of IC pain, IC & Pain adds, “Research indicates that the pain of interstitial cystitis may be more severe than that of some forms of cancer.”
A new view of pain
I don’t trivialize or deny the suffering of people with terminal or acute illnesses. My point is the medical profession is starting to realize that, even for patients who are otherwise stable and somewhat ambulatory, chronic pain is not a side-note you can safely ignore. Chronic pain is debilitating, depressing, and downright dangerous. For example, IC itself won’t kill you. But as IC & Pain notes, “intractable pain has resulted in suicides each year because patients are left to live with severe, debilitating pain and have nowhere to turn for help.”
The shock I experienced from reading this was not the revelation that IC is a terrible thing to live with. I’ve known that for years. The shock was that it was the first time I have ever read or heard any outside affirmation that my pain really is that bad. For example, I’ve seen a so-called expert in the treatment of IC shrug when I said I was still in serious pain after a few months of his prescriptions. I’ve also heard that pelvic trouble is just something women have to deal with.
Instruments of torture
I’ve written about a diagnostic procedure in which I was catheterized and then pulled to my feet and hooked up to a machine with wires that pumped my bladder full of fluid from the outside in. My job was to tell the physician’s assistant the exact moment when I could not stand another drop.
For a healthy person, this (while humiliating) might not have been so bad. But for me, the pain was horrible.
The PA was annoyed. “It’s not pain,” she said. “It’s discomfort.”
Doctors and nurses have been frowning and palpating my abdomen and prescribing ultrasounds for years because they can’t reconcile all my wincing and gasping with my total lack of tumors or appendicitis or renal failure or something besides IC. They can’t accept the fact that so much pain is not coming from an acute condition that needs chemo, surgery, or at least a couple of Vicodin.
Can anyone hear me?
IC & Pain says that it can take the average IC patient up to seven years to get an accurate diagnosis. I would add that even after that, doctors still may not believe what they read in your records, or what you say about how you feel.
Over the course of a few years, I went to three urologists in a row who each insisted on their own battery of different diagnostics to come to the same conclusion, actively denying that my medical record or my own description of my symptoms was an accurate basis for any treatment they could prescribe.
“Wow, you’re a textbook case,” the third urologist marveled when his tests were finished.
Unfortunately, when you’re in a hospital gown and are facing a team of medical assistants who just finished measuring the exact volume and velocity of your urinary tract, you’re so demoralized that it’s hard to chant, “I told you so!”
I was in a similar situation when a urinary tract infection landed me in the ER several years ago (yes, people with IC can still get UTIs, and they are epic on the pain scale). From the hospital bed, I explained that the pain was so severe because I was not the average UTI patient – I had IC. But they still poked and frowned and ordered completely unnecessary tests for sexually transmitted diseases, despite my medical record detailing a chronic pain syndrome that explained my symptoms perfectly.
Another doctor, administering a work-related physical, conflated “interstitial cystitis” with simple cystitis (a bladder infection) despite my attempts to explain otherwise, and told me to drink cranberry juice — a beverage that may help prevent cystitis, but wreaks havoc on IC patients. Sort of an important distinction when you’re giving dietary advice to your patient.
To ignore or not to ignore?
At 30, I am just now learning that when it comes to pain, you have to be your own advocate.
I wrote recently about getting an MRI for lumbar spasms of the “kill me now, God!” variety. My primary care doctor, who had seen me weeping in her office, unable to sit in a chair, chose to ignore that distress when my MRI analysis turned up, to her eye, (mostly) normal.
She said my sacroiliac joint was probably acting up and sent me to physical therapy. When I wound up in unspeakable agony again a few weeks later, she finally referred me to a pain specialist who took one look at my MRI report and pointed out a small annular fissure — a tear in the lining of a lumbar disc — which my other doctor had ignored.
My new specialist says that some people experience those fissures without too much pain, while others feel pure torture. Unfortunately, I’m the latter camp.
Pain’s Bill of Rights
You can’t measure pain like your heart rate or blood pressure, but IC & Pain presents an interesting concept it calls the “Pain Care Bill of Rights,” as proposed by the American Pain Foundation (APF).
It’s worth noting that the APF, which closed down in 2012 due to a professed lack of funding, weathered controversy because of alleged financial ties to opiate drug manufacturers and its position that chronic pain sufferers should be getting more narcotics, not less, despite questions about the drugs’ efficacy, side-effects and addictive nature.
But APF insisted it was a patient advocacy group, and reading over its “bill of rights,” I realized my own “rights” as a patient with chronic pain have been violated repeatedly.
For instance, as you can see, my “right to have [my] report of pain taken seriously” has often been ignored.
“In treating interstitial cystitis, the following definition of pain taken from a nursing textbook is the most useful,” IC & Pain says: “Pain is whatever the experiencing person says it is, existing whenever he or she says it does.”
Bottom line? You decide your line between discomfort and pain — not the doctor.
Back on the bill of rights, you also have “the right to be informed by your doctor about what may be causing your pain” and the pros and cons of any possible treatments. In my case, my primary care doctor chose not to mention the annular fissure on my MRI to me, even though she knew I was in extreme distress.
Later, I insisted on getting a print-out of the MRI report for myself from my specialist. It mentions a disc protrusion “which encroaches upon but does not definitely contact” the adjacent nerve roots. My former doctor told me my spine was fine and my pain had no clear cause. But my new doctor, instead of ignoring my pain, took it into account and guessed that that “encroaching” disc was indeed causing trouble, along with the fissure. He was probably right: He quickly administered epidural and steroid injections (covered by my insurance policy) that reduced the swelling, stopped the spasms, and lessened the pain (restoring my will to live) in about a day. Weeks later, I still have some pain, but getting out of bed doesn’t make me scream and cry.
Now that you know all my business, what’s the point?
Why write all this? Is it just some self-pitying litany of complaints from a chronically ill person?
But what I really want to say here is that if you or someone you know suffers from acute or chronic pain that has been minimized or dismissed by healthcare providers, you’re not alone. The right doctor may be able to help you — a doctor who understands that pain should not be downplayed or ignored because it doesn’t have an obvious, common, or directly life-threatening cause (or because you’re a woman).
So speak up for your body. Speak up for yourself.
Have you had a similar experience with a little-known chronic illness, or back pain? Share your story in the comments.
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