I’ll teach you the meaning of pain! (A primer for doctors and people with chronic pain)

 

Medicine has changed since Thomas Eakins painted "The Gross Clinic" in 1875. Right?
The practice of medicine has changed a lot since Thomas Eakins painted “The Gross Clinic” in 1875. Right?

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.

Please rate your pain on a scale of one to five. We might believe you.

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.

If you end up here, always remember who is living inside your body: YOU.  Image via Wikimedia Commons.
If you end up here, always remember who is living inside your body: YOU. Image via Wikimedia Commons.

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?

Maybe.

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.

This isn’t a blog about illness — it’s a blog about what I want to say this week. If you want to be in on the next discussion, scroll down to subscribe. 

14 Comments

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  1. Guh. What a story. SOOOOOO SORRY about both the chronic pain and the lack of understanding of it from healthcare providers, and glad about your realizations about it.

    I’ve had similar experiences with doctors not understanding my chronic tiredness, depression and moodiness, wanting to prescribe antidepressants when I *knew* it was related to thyroid/adrenal imbalance and candida overgrowth. I’ve had doctors get annoyed at me because they couldn’t figure out what was going on with me, and ask me what voodoo I’ve been reading. I’m really grateful that it’s easy to find alternatively-minded MDs here where I live, and that naturopaths can prescribe medications in Oregon. After many, many years of suffering real – but mostly invisible – quality of life issues, I’m feeling well on the road to recovery. This is all different than chronic pain, but the dismissal and annoyance of the medical establishment is similar.

    • Thanks Anna. Sorry about your own struggles; glad you’re on the right road now. I can totally relate to that awful feeling of when a flummoxed doctor seems to blame you for the problem, as if it’s your fault that they don’t know what’s going on. One of my life’s rock-bottom moments was this year in the ER, when I told a doctor I couldn’t take narcotics b/c they make me sick, and he said, exasperated, “well what do you want us to do for you?” Trust me, I did not go to the ER because I knew what was wrong with me. I only knew I was in agony. Even if they couldn’t fix the problem, they could have shown a little mercy.

  2. Medical doctors are trained to deal with physical issues that they can see. Unfortunately, although pain usually does have physical causes, the pain itself can’t be seen because it is a phenomenon of the mind, not of the body.

    • I seriously contest the notion of pain being “a phenomenon of the mind.” If that were true, why does topical or localized Novocaine or Lidocaine block oral or IV injection pain? Why do NSAIDs stop a headache? Why did a steroid injection get me walking again when I was in agony the day before? I think the best we could say here is that pain is a reciprocal mind/body phenomenon. If you say pain is invisible, then so are love and sadness — or do kisses and tears make them visible? If so, why doesn’t a scream or a spasm make pain visible? Plus, what carries pain in our bodies? Our nerves and neurotransmitters. Modern science does let us watch them work. When you can watch the brain light up in a real-time pain response, is pain invisible?

      And in the case of my bladder and my back, the problems WERE things the doctors could see: my medical records can tell anyone that there are ulcers in my bladder wall, and my MRI showed a fissured disc. The problem was health care providers who chose to ignore that stuff. Similarly, my mom had an awful experience several years ago when a doctor missed a badly broken heel bone on her x-ray, and she suffered for days before another doctor saw the mistake and put a cast on her foot. But you’re right that many pain syndromes are physically invisible, even with advanced testing, and that’s a rotten thing to go through.

      My guess is that the future of medicine will be able to tell us things we can’t see now about the genesis of pain in conditions like Fibromyalgia. Just because we don’t have a test that makes it visible today doesn’t mean we won’t be able to see it in the future.

      • All I mean is that we experience the pain in our mind, even if it is associated with physical conditions. Doctors can’t climb into our mind and feel the pain we’re feeling. This is not to defend doctors. It’s just an unfortunate fact.

      • Yeah I would not wish the pain I have on someone else even if I really, really hated them. Maybe I would wish it on a doctor but just for a minute or two so maybe they could help me. And to be fair, I have had some good doctors in my life. Like any profession, it has its bad apples and I’ve just had more than a few. I also think the field of pelvic medicine in general, at least for women, is poorly understood in general.

  3. If I could take away your pain I would – at least I was able to find one doctor who did help you with excruciating pain. I believe you have to look, but there are doctors who truly care about their patients. Unless you walk a mile in someone else’s shoes – or maybe a quarter mile in yours – you won’t be able to understand how another person is feeling. However I do believe a positive outlook is important to managing chronic pain – very difficult – but worthy to attempt.

    • I think work you can do in bed is the key to managing pain — or at least the key to not going all the way batty. I agree that there are many great doctors in the world and I’m really thankful for my current specialist. The physical agony is its own kind of hell, but having your doctor tell you there’s nothing wrong with you when you feel like you’re losing your grip on life itself is a whole other problem. I’ll always be grateful for your help in getting me the right treatment when I wasn’t able to manage it on my own.

  4. You’re far from self-pitying in this post. Very valuable lesson for everyone in this. There’s a need to trust professionals but you have to live in your body long after a specialist says there’s nothing wrong.
    Hope you, metaphorically speaking, put the old GP’s ego in a hurt locker on your way out the door.

    • Thanks. I hope someone else can read this and learn to be a better self-advocate at the doctor’s. We can’t all be diagnosing ourselves on Web MD, but we also can’t be trusting everything a person says because he or she is in a white coat. I’m definitely going to try another primary care doctor if and when the need arises.

  5. I have adenomyosis. it is so unknown most doctors don’t even consider it for anyone under the age of 35 or who hasn’t had multiple children- think endometriosis, where the uterus builds up scar tissue on it’s outside, only mine grows it in the inside. It took me over a decade, and four different gynecologists, for anyone to even mention this condition to me, let alone recommend anything other than either birth control pills, which is used to take, or a full on hysterectomy.
    I’m 26. My periods started when I was 10, and the intense pain started when I was about 14. Vomiting once a month became common. Then heavy periods and horrible pain. Pills gave me weight gain and depressive symptoms. I was in horrible pain, my periods basically didn’t stop for a long time. I had chronic anemia. My primary doctors would just recommend iron pills. More than a few doctors, nurse practioners, and gynecologists told me things like periods are just painful for some women, it might get better when I had kids, and so on. When you are 21, single, and have trouble getting out of bed, being told it will improve once you spawn is incredibly demeaning.
    After my two years teaching abroad finished, I came back and went to a new gynecologist in my parents’ town. She said I had fibroids and referred me to a fibroid center more than two hours away. Then, when I called her receptionist to get a different recommendation (because I didn’t have my own car and I mean, two hours?) she was incredibly rude to me, told me that was the only place (in the whole state? Do I look that stupid to you?) that treated fibroids, and hung up on me.
    So I found my own doctor. This was Ohio, so I went online to the website for Cleveland clinic, chose a doctor who looked nice and who specialized in laparoscopy, which I was concerned I might need, and made an appointment. She was the one who got me an MRI, told me what I had, and finally, at age 24, told me what an IUD was. To say she saved my life would not even be an overstatement.

    I’ve had the IUD for a year and a half now. I still have pain, but no long all down my legs, all across my back, and down my arms, like I often used to. I finally have my iron levels back up and feel so, so much better.

    I would go so far as to say that women’s pain in particular is marginalized. It is so hard to get menstrual issues treated in this country, and the lack of information girls and women are given about their options is pathetic. I also want to add that I thought I had endometriosis from age 16, and doctors at the time shot me down over and over again. To get good care, not only do you need to speak up for yourself, but do your own research. if I had gone where my earlier doctor had recommended, I would have wasted huge amounts of money and time treating a condition I didn’t even have, and would have been back to square one. Who knows, I might not even be here.

    • Thanks for sharing your story — I hope it can help somebody else. I’m sad to say I can relate to so many things about your treatment over the years. One of the most bizarre experiences I had was when I asked a urologist (I was perhaps 20 at the time) if having IC would complicate a pregnancy and/or birth, and the doctor refused to even entertain the question. He chuckled and said I was very young and I should just worry about that later. At the time I was embarrassed because he acted like I’d asked an inappropriate question, but now I realize how sub-par his care was. Since when should you brush off questions about reproductive health from a WOMAN OF CHILDBEARING AGE who has a chronic illness AFFECTING HER PELVIC FUNCTION? What, is it clinically impossible for a twenty-year-old to get pregnant now, because you think she’s too young? Is it completely out of the realm of possibility that she would want to begin preparing for any reproductive challenges a few years before she decides to get pregnant? How did all these jackasses make it through med school and into their own practices?

      To your other main point, yes, I completely agree that “women’s problems” get far less medical attention than they deserve. There is still this awful assumption among all kinds of practitioners that women naturally have a lot of pelvic pain and they should just learn to deal with it. If a man came to the doctor for chronic pain in his penis that interfered with his sex life or daily life in general, would the doctor say that penises are just naturally a painful organ? No way. We have enough prostate and erectile dysfunction drugs to sink a battleship but women just get the side-eye and another referral.

      There is also a pretty incredible failure to see a woman’s body as one complete system, rather than disconnected parts, particularly when it comes to pelvic care. For years, IC treatments didn’t calm down my pelvic pain, until a new specialist who could look beyond my bladder walls diagnosed me with pelvic floor dysfunction, a side-effect of all my pain and stress over the years, and prescribed therapies that help, even if nothing can completely take the pain away. I’m glad you’ve had a modicum of success as well after a nightmarish trek. That’s a great line about how you’ll get better if you’ll just pregnant. Those doctors should hang out with my old urologist.

  6. It’s much easier for docs to pretend our pain doesn’t exist than to deal with the fact that sometimes they CANT DO SHIT.

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