Diagnosis Roulette: My Pain Vocabulary is Fundamentally Flawed

“So, based on what you’ve told me, I don’t think you’ll need a laparoscopy at this stage. We can revisit that later, if things get worse.”

As I sat in the office of my newly-referred ob/gyn, I felt a sense of relief. At this stage, I’d either recently had or was booked in for: emergency surgery to correct a problem (successful), day surgery to try and prevent that problem from recurring (successful so far), and a colonoscopy to see if we couldn’t find the ultimate cause of that problem (not successful. The mystery remains). I’d come to see this fellow because I’m 34 years old and I have three chronic illnesses and I’d like to have a kid at some point and I wanted to know whether there was anything in that combination of issues that was going to make the process tricky.

I really, at that stage, didn’t want another laparoscopy. I felt I was at capacity for anaesthetics. I didn’t want to recover from surgery, with little holes going through my abdominal wall, and not be able to work out or move around properly, or the massive three-week fatigue and depression that is my response to general anaesthetics.

“We can revisit that later.”

We are damn well going to revisit that.

I am going back to see this fellow on Tuesday to say that now I really, really want a laparoscopy. It’s not that I get off on abdominal wall perforation or passing out or being stuck in bed with a heat pack for a few days. It’s that I’m in pain. Almost constant pain.

And I wonder if that was true even then, but I didn’t acknowledge it, or know how to talk about it; or if the condition has actually progressed; or both.

The problem when talking about pain is, for me, multifaceted. I have numerous friends with chronic pain issues (mostly women or trans, just thinking off the top of my head, and this is relevant for reasons I’ll get to later), and I’m curious to get their input on this issue.

Firstly, as a redhead and a hypermobile person and a person who makes their comfy home on a certain spectrum I don’t talk about publicly very much, my pain processing is… wonky. I wrote about that here, but in a quick summary: I have both a high pain tolerance and a high pain threshold, and often I don’t notice I’m in pain until it gets bad enough to cause nausea or dizziness as a shock response. This is something my body does – I am convinced – to get my attention, because the usual methods haven’t worked (I anthropomorphise my physiology all the time. It keeps things interesting).

Basically, the signal gets lost in the static, and my body has all the symptoms of someone in pain as far as the autonomic nervous system is concerned: blood pressure, heart rate, hormonal fluctuations, etc. The only thing missing is the part where my brain tells me what’s going on. When I do get that signal, it’s kind of muted.

This does not mean I live some gloriously pain-free life. Far from it. I absolutely feel pain. I hate it, the way that most people do. I just don’t always feel it exactly when I’m supposed to or as intensely as I am supposed to. It also varies by the different kinds of pain; I am, as most redheads are, a little more sensitive to pain of the hot/cold variety (although, again, I suspect that hypermobility and ASD issues mute it a little). Acute stabbing ice-pick pain is usually sharp enough to cut through my static (so to speak). As for throbbing, cramping pain, or the burning pain I relate to leg-waxing (which I have not done much of, because blond leg hair gets you out of many feminist quandaries), well, these things don’t really get through properly. The pain of a broken bone, it turns out, falls into this category. Having fractured my finger and my big toe, I found the pain bad enough to distract and upset me (the finger was much worse; I felt nauseated), but not anywhere near as overwhelming as it apparently should have been. I couldn’t even tell the doctor exactly where it hurt when I broke my toe. I had to show him. My hand knew where the pain was. I could find it by touching it. The entire rest of my body was unable to articulate the sensation in any useful way.

So what does this have to do with my vocabulary of pain?

Well, this makes things really difficult in a diagnostic sense, since “where does it hurt?” and “how much?” are pretty basic first-stage questions to ask.

It also means that I can work through a great deal of pain without making a fuss. I do get fatigue from it. I do get grumpy. I do get distracted. Because of these symptoms, Husband often knows I am in serious pain before I know it myself. Then when he asks, I stop, think about it, listen to my body, and I sort of go dowsing for the pain signal. “Oh! There it is. Yes, I have an owie.”

Recently I got cross at Husband, because he was frustrated (on my behalf) by the amount of pain I was in. He kept describing it as “debilitating” and “crippling” and I kept wincing and getting upset, because my standard for “debilitating pain” is either passing out, throwing up, or the acute stabbing pain I described above. If it’s none of those things, it’s not that bad, and I feel that when he describes it that way, I must have been complaining too much or making a big fuss about nothing. This ties into another issue below – but all Husband is doing is describing the effects of the pain, which, essentially is: “I can get nothing done and can’t concentrate.”

But I’ve had a bit of an epiphany.

I was going to write an entirely different blog post this morning. I’m sitting outdoors at a café at Circular Quay, Sydney, on a beautiful sunny winter day, appreciating the bridge and the harbour. I live in Melbourne, and my trips to Sydney are few, and the train always goes past Circular Quay and I see the sun hitting the water and get incredibly wistful. Today I had time before my flight, so I got off the train and sauntered to a café.

I was reading blogs on my phone when I started shifting my body weight uncomfortably. Then wincing. Then taking slow deep breaths through the cramp. I think it was a full ten minutes before I stopped and realised how uncomfortable I really was, and made myself take painkillers (I have painkiller problems. I can’t take NSAIDS – ibuprofen, etc. – because I may probably have Crohn’s. Paracetamol itself does nothing for me. This leaves codeine, which makes me fuzzy, and which I don’t want to become dependent on, so I have to make myself take it with stern internal diatribes).

I couldn’t think. I couldn’t concentrate. I was trying to read a blog post about American history and its influence on current politics, and the entry kept swimming in front of my eyes. A few minutes ago I’d been following the implications pretty well. Then I was re-reading paragraphs over and over again to try and make the words make sense. Then I was just breathing through the pain slowly.

And then I realised that it hurt.

It is, to use Husband’s words, genuinely debilitating. It is stopping me from doing basic things that I want to do.

And that’s when I started to wonder if I really had been reporting pain honestly as far as my pain processing is concerned – or if I had been downplaying it. Not on purpose, certainly, but in that kind of instinctive way that women tend to do.

There have been quite a few surveys and studies that reveal the fact that women tend to go to the doctor more than men do, overall. Men tend to try to “tough out” illness and pain, and this usually has pretty disastrous consequences for their health. They end up missing the early intervention stage and ultimately have to take more time off work – and that’s the most benign outcome. While this data could be interpreted as saying that women overreact to illness, most medical professionals make it clear that the opposite is usually true: men tend to underreact, and this is easily linked to some fairly toxic tropes of masculinity and the pressures on men to present a stoic and invulnerable front. Admitting to illness, pain and injury is a vulnerability, a sort of fragility, and there are overwhelming social pressures on men to avoid it. I won’t even go into issues with mental illness stigma. Our male suicide rate is as nasty as it is for good reason.

But women have their own problems with underreporting. We’ll go to a doctor, often feeling guilty for taking their time up with our trivial problem, half-wondering if we shouldn’t just stay home and work through it, and not bother anyone, but you know, what if it gets worse? We should get it checked out now, to avoid trouble later.

Why this guilt and self-doubt? We aren’t subject to the same pressures of performing masculinity – but it turns out we are subject to something else.

We are subject to dismissal. There is overwhelming evidence to suggest that, when women say that they’re in pain, and give a rating, doctors instinctively knock it down a couple of notches in their assessment. Not just male doctors, either. The overwhelming instinctive response to female pain is to dismiss it – our understanding of feminine identity is so intertwined with a notion of weakness and fragility that, even when we should know better (“we” meaning “even women” – I’m not a doctor. Well. Not a medical doctor…), we assume that pain is being overreported. We assume that the pain a woman worries about is pain that is not worth dealing with.

I’ve been there. When I was trying to get my mysterious pelvic pain diagnosed (turned out to be endometriosis), I got diagnosed with various things from sub-acute appendicitis to severe constipation. One doctor started to hint at mental illnesses, starting to ask if, well, was I under a lot of stress lately? And I started to wonder if basic PhD stress would cause breakthrough bleeding that I’d never had before, or stabbing pelvic pain, or for me to burst into tears in the middle of a Pap smear from agonising pain which had never ever happened before. I thought that probably that wasn’t the issue.

I switched to another doctor, and she did take me seriously, and thought maybe I had PID, so she sent me off to the Mercy, where an intern said that I absolutely did not have PID but had anyone told me about endometriosis?

That’s a total of four accomplished medical professionals to suggest a condition that is estimated to affect ten percent of women – a disease that is staggeringly under-diagnosed and takes an average of over a decade to get diagnosed, because no-one takes period pain seriously, because bitches be crazy and hysterical, am I right?

But let’s talk about what endometriosis pain actually is. Endometriosis is a condition wherein endometrial cells – the cells that normally line the uterus, and are shed monthly in a hideous glory of blood and inflammation and pain – start hanging around outside the uterus. They wander around the abdominal cavity and form lesions behind the uterus, on the small and large bowel, on the abdominal wall, and basically anywhere they turn up. They then get inflamed and bleed and cause immune responses and other issues. Inside your abdominal cavity.

Then, of course, the repeated attacks from the immune systems eventually cause scarring. When scars form, it’s a form of healing. When things heal, they seal up. They fuse. So your organs stick together in ways that they are not supposed to do, meaning that every time you move, they stretch and pull inside you. Your organs. Tugging at each other. On scar tissue. This is considered quite an advanced state of endo; not everyone has it; and it’s not required for pain.

But when you describe this sort of systemic breakdown, the response you get is usually not “Pfft, that doesn’t sound like it would hurt much” or “yeah but it’s totally natural and women have been doing it forever so why are they complaining.” It’s usually “HOLY FUCK, THAT ACTUALLY HAPPENS? WHAT THE ACTUAL FUCK? GET THAT SHIT SORTED.”

If, of course, all you say is you get bad periods, you’re much more likely to get one of those first two responses. Especially from other women who don’t get “bad periods.”

The pain I’ve been getting is – at least I think – endometriosis pain. Curiously, there’s no correlation between the extent of endometrial lesions and the amount of pain. Women can have extraordinary organ fusion and no pain to speak of; or a couple of pathetic little lesions hanging about and crippling pain. This condition is not well understood at all. When I had my first laparoscopy, I had a few pathetic lesions myself, and pain that was consistent enough and unusual enough that I went through multiple doctors trying to figure out what was wrong.

So, to bring things back to my point: in spite of my determination not to do so, I instinctively underreport pain. I try to describe it by “I am stuck on the couch for multiple days.” I don’t mention the days where I can work through it – even though the only reason I can work through it is because of my messed up pain signalling. I don’t want to push it. I tentatively do push it. I say “Well, it’s pretty unpleasant. It’s not fun.” But I don’t push as hard as I should.

And I’ve come to the conclusion that I just don’t know how to talk about pain. As a person with chronic illnesses that come with chronic pain (seriously, hypermobility – I usually just ache in my joints and my back, and that’s just normal, and I don’t pay attention to it), and as a woman who has been taught that her pain is irrelevant, and that she should never make a big fuss about her own problems – I don’t have the vocabulary. I don’t know how to understand it or think about it, and that’s ignoring the fact that I don’t even feel it properly half the time. We also don’t remember pain well. This is a perfectly sensible evolutionary strategy, but it means that if I’m not actually in pain at the time that I’m talking to a specialist (and you take what appointment you can get, so there’s every chance a chronic intermittent problem might be in abeyance by the time you get to see them), I have trouble coming to grips with how much pain I was in prior to the appointment, and thus would likely be in again later on.

And when I think about it, I come back to a conversation I had with a GP I didn’t know, at a walk-in clinic, where I’d turned up to ask for Panadeine Forte and my usual pill script that would actually work to manage my endo (up to a point). I explained about my history with endo and how hard it was to get a diagnosis, and the things I went through before anyone even suggested it; and his understandable instinctive response was to defend the medical profession with how hard it is to diagnose endo.

He’s right. It’s a diagnosis of exclusion. The only way to definitively diagnose it is with a laparoscopy, which is also a treatment.

And yet. Ten percent of women. He said “There are so many other things it could be!” and I asked if perhaps we shouldn’t suggest endometriosis after we’ve ruled out those things, instead of going straight to an assumption of mental illness – no, let’s call that what it is: hysteria.

He blinked a bit, agreed that made sense and then said, “But women don’t say they have painful periods. They don’t complain about it.”

Then I unloaded a bit. Politely, as I tend to do. I said, “We don’t know we have painful periods. You can’t compare pain from person to person. There’s no way to share that experience. You just have what you have, and since we’re told from the word go that it’s supposed to hurt a bit, that pain is normal, we just think that’s how it is supposed to work. Literally no-one has told us that it’s okay to complain, that you are not supposed to feel sick and exhausted or pass out or throw up or be unable to move. So no, we don’t say we have painful periods, because we don’t know, and even if we did know, no-one seems to care.”

After that, he asked me many questions about how endo felt, and what books I’d read on it, and said he was going to go away and read more about it, because he really didn’t know much about it. I recommended “Endometriosis for Dummies.” I am not joking.

So I guess, sometimes it is okay to unload and complain about pain.

Good to know. I just wish I knew how to do it more effectively.