This is not news.

But I’m going to write about it anyway: Women’s Chronic Pain Misdiagnosed, Undertreated, Dismissed.

Because it’s been one of those weeks, medically. Where I’ve been trying to get my anti-bleeding pills but have run into roadblock after roadblock with my insurance and pharmacy. Basically, right now, it’s no one being malicious — but a lot of people not understanding that this isn’t really a nifty convenience medication.

… many women still are told “their problem isn’t real. Your pain doesn’t exist, you must be imagining this,” Christin Veasley testified.

Or that their pain is real, but that it’s a normal, expected part of life. (Which is true for some pain, yes, but decidedly less true for other types.) That they’re exaggerating or that they “just have a low pain tolerance” — as if that tolerance means the patient should just suck it up and deal with the effects the pain is having on them anyway.

Or, my favorite, that this is just “the curse of Eve” (used to describe way more than childbirth and/or menstrual pain).

Drawn image of woman on couch. A rope is wrapped around her waist, and small beings -- maybe demons? -- are pulling it in opposite directions.

George Cruikshank: The Cholic, 12 February 1819. Public domain. Obtained via Wikimedia Commons.

… the one in four American women and “countless adolescents” suffering invisible but excruciating genital pain at some point during their lives.

That number is shocking to me. I believe it, and I have been one of them — am one of them now, if one counts pelvic floor dysfunction in the category of genital pain — but that number still shocks me. This is not a rare thing; it is not even a terribly unusual thing. Basically, it means that odds favor that someone that you know has experienced this level of pain. Why do we not talk about it? Why do we not work harder to diagnose and treat it?

The cost of chronic pain exceeds $600 billion each year – more than cancer, heart disease and diabetes combined, the IOM report found.

The cynical part of me wonders how much of it is patients moving from provider to provider, seeking someone who is motivated to help. Or being denied treatments or retrying treatments they’ve already tried, just to re-prove — to this new provider — that they don’t actually work. And of course I wonder if the cost of non-prescription (or non-legal) treatments factors into this number at all.

The other cynical part of me wonders how many people immediately jump to the “cost” of chronic pain in terms of people taking sick days, paying out disability payments, or other versions of “now other people have to pick up their slack.” Which is kind of a gross and twisted — not to mention inaccurate — way of looking at it. For one, I live with chronic pain, and I carry my own (hefty) weight and pick up my own damn slack. For two (that is a phrase now, officially), how terrible is it to think of people experiencing chronic pain and have the predominant thought be, “But what about what they’re costing everyone else?”

In other words if a woman with chronic pain also suffers from depression, a doctor may attribute all of her complaints “to being depressed, so no further evaluation or treatment is needed,” Collins said.

Or if a woman deals with PTSD, health care providers might attribute all of her pain to stress and anxiety.

… when it comes to doctors’ decisions about managing pain, a February 2003 study of doctors’ pain management knowledge and attitudes, published in The Journal of Pain, found that women were less likely than men to receive “optimal treatment” for post-surgical or cancer-related pain. That study also found doctors set lesser goals for chronic pain relief than for acute pain and cancer pain.

I honestly can’t complain about any post-op pain management I’ve received, on account of the post-op pain has always been so much less than my chronic pain. If the meds have been even a little stronger than my usual, there’s been a “Glory, hallelujah!” chorus going in my background.

That said, when it comes to chronic pain, I’ve had some health care providers ask, “Have you ever considered suicide or self-harm?” And when I answer “no,” decided this meant my chronic pain was not so serious. I wish them all jalapenos, intestinal gurgles, and sixty miles before the next rest stop. Have fun defecating behind a cactus.

Among its findings: “pain management is a moral imperative,” and “chronic pain can be a disease in itself.”

Excellent. Now please send every health care provider in the country this same fucking memo.

Because really, if I had a nickel for every time a health care provider told me that: 1) my bleeding was the real problem, not my pain; 2) as long as my endo wasn’t affecting my fertility, there was no reason to aggressively intervene — Well, okay, I would not exactly be able to retire to the south of France, but I would at least be able to play nickel slots for hours.

Reducing the impact of pain and suffering in this country will require “cultural transformation in how pain is perceived and judged both by people with pain and by the health care providers who help care for them,” Pizzo said.

Precisely. I am a whole person both with and apart from my pain. For any doctor to help me, they must first understand and sympathize with that.

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8 comments on “This is not news.
  1. Princess R says:

    What disgusts me about the “low pain tolerance” meme (and I’ve been told that) is that I know I *don’t* have a low pain tolerance. I broke my ankle and was managing my pain just fine on much lower dose painkillers than they wanted to give me (funny how when there’s X-rays, suddenly pain is real…).

    But when I discussed my excruciating cramping and how it meant for basically two days a month I was *completely* non-functional because trying to stand up overwhelmed me with nausea and pain…suddenly I have a low pain tolerance. It wasn’t until I lucked (and I do, honestly think it was luck) into a doctor that had treated other patients with what I have that my pain was taken seriously and recognized as part of a condition I could be treated for (PCOS if anyone’s wondering ;) ).

    • Tori says:

      Yeah, I really hate the whole “low pain tolerance” thing since it’s often used an excuse to undertreat — or fail to treat — pain. Like you said, I think people are more likely to talk about low pain tolerance to dismiss pain that’s more likely to be stigmatized (pain not caused by a visible injury, stereotypical “women’s pains,” pain caused or exacerbated by mental health issues, etc.). And yes, I know I don’t have a low pain tolerance, either. I walked for over a week on a broken foot because it didn’t hurt badly enough, so I thought it must have been just bruised. So when a health care provider tries to dismiss endo pain as “low pain tolerance,” it’s like they’re telling me I don’t know how to properly experience and gauge my own pain.

      And even in situations where someone might actually have a low pain tolerance, what good does it do to give them inadequate pain management? I mean, I certainly get that there’s a balance between potential treatment side effects and the effects of pain. But having a lower pain tolerance — that is, still experiencing life-interfering effects from pain — doesn’t mean, “Hey, these same methods worked for other people; if they don’t work for you, that’s sad, but what are you gonna do?” Which is what it ends up boiling down to sometimes.

      • Princess R says:

        Yes. So much all of this. I wish I could print this out and hand it to every doctor I meet for the rest of my life and have them understand it.

        • Tori says:

          I cannot help you on the doctors understanding bit, but as far as my words are concerned, you’re more than welcome to print them out and try. Good luck! :P

  2. Shauna says:

    I am so incredibly lucky to be at a university whose health center has dedicated staff who believe me when I say I need help managing pain. Of all the things that will happen when I graduate, I think losing access to that is the one I’m least looking forward to.

    Going to any other doctor is kind of iffy for me. Many of them look at me, notice I’m in my late teens/early 20s, and tell me I shouldn’t have that kind of pain yet, because I’m too young. :/ (Well now, that’s an original observation. Do they think the thought has never occurred to me? I would much rather it all waited 30 years, myself.)

    • Tori says:

      Yeah, it was just after college-time when I started hearing variants of “this shouldn’t be happening (yet)/this is not normal.”

      To which I started going, “I know! That’s exactly why I’m here!”

  3. [...] ABC news reports that women’s chronic pain is mistreated and underdiagnosed, when it’s not outright dismissed; Tori explains why this is not news. [...]

  4. [...] Experiencing chronic pain is not “just part of life” and people who suffer from chronic pain should not be dismissed. [...]

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