Friday 30 March 2018

On Living With Pain

Pain is a tricky thing to talk about.  It is subjective - one person's 8 on the pain scale may be another person's 5.  Regardless of this, pain is something we should all take a little more seriously in terms of how we see our own health, and that of others.

Recently I got some gastro bug thing - which is fairly regular occurrence now I'm a parent of small humans.  It was bad enough that I felt super wiped out and had to take time off work.  But I thought it was just a regular tummy bug - I was glad it was just 'poos' and not 'poos and spews'.  A few days later, Murray caught my bug.  He also had to take time off work, but what was different for him was the pain.  He described it as the worst abdominal pain he'd ever experienced - like vices gripping specific areas of his stomach.  Because his pain differed so much from what I'd experienced I was concerned.  Maybe he didn't have what I had?  Maybe he had appendicitis?

       Me in Auckland hospital
for my second ectopic pregnancy


When we quickly realised this was not the case, we postulated theories as to why his pain was worse.  The most logical one we could come up with was that because I have regularly encountered abdominal pain (IBS, ectopic pregnancies, ovarian cysts, prolapse) my body may have acclimitised to pain - maybe his 9 on the pain scale is a 5 for me.

Current scientific research tells us that actually the opposite of this is true.  People who suffer from chronic pain conditions can become more sensitive to pain as the nervous system's function is altered by overuse.  This led me to wonder if, given my health history, my nervous system experiences pain as it's supposed to.  Has something that was once a 5 on my pain scale crept up to a 7?  And if it's supposed to be a 5 and not a 7, does that mean I'm worried over nothing?

A terrifying diagram of BV                   

I am pretty sure I'm not the only person to question whether the pain I experience is 'real'.  And I think the main reason I question this is not because of the newly learned information above, but because the medical profession rarely seems to take my ongoing pain seriously.   To give a recent example, since giving birth to Etta (nearly 5 years ago), sexual intercourse has been painful.  Initially, it was excruciating - penetrative sex was not really possible for the first six months post labour.  When I finally got brave enough to tell my GP he told me that bacterial vaginosis was the obvious cause of my pain.  Unsurprisingly*, his treatment plan for BV was only mildly helpful. But because he had physically examined me and found nothing obviously wrong previously, and because his manner made me doubt my pain was 'real', I was anxious about bringing it up again.

Since then, when asked about whether I needed birth control I have routinely said that because I am exhausted and it is painful, I don't have sex enough to justify using it.  On zero occasions has that elicited a worded response, or advice, from a single GP**.

My mother has suffered from debilitating abdominal pain for my entire living memory.  She had a full hysterectomy when she was younger than I am now in an effort to alleviate her pain, which later caused further complications.  When I told her I was writing this and asked for her input she said '..my abdominal pain*** is generally always ignored, not mentioned at all.  I have to bring it up and no-one has ever questioned me about it and my GP does not factor it in as a reason for me not being able to work but is happy to issue me prescriptions for pain relief every time I go.'

From the countless first-hand anecdotes, blog posts, articles and statistics I've read, our experiences are not unusual.  And as a common experience this does every person suffering from undiagnosed chronic pain a disservice.  Because aside from the obvious social outcomes**** of living with chronic pain, the physiological outcomes of chronic pain are massively under-rated.

Chronic pain affects almost every endocrine system in the body.  This can lead to changes in insulin glucocorticoid states.  What this means in regular speak is that ongoing pain changes how we metabolise lipids which affects the system that sends chemical messages through our bodies (via hormones).  This can lead to further health conditions including mental illness, muscle weakness, osteoporosis, diabetes and changes to metabolism - weight gain or loss.  Not only this, but recent studies have shown that chronic pain can lead to indolent hypertension and tachycardia, which in turn can lead to heart attacks and strokes. 

So living with chronic pain can (and does) literally kill people.

And, of course, pain is the body's way of telling us when something is wrong.  When you cut yourself chopping veges, you (usually) feel pain.  When you fall over trampolining and sprain your ankle, pain is one of the things that indicates the severity of your injury.  When you have appendicitis, sharp pain when pressure on the appendix is released indicates to medical professionals what their likely diagnosis is.

When we, or medical professionals, ignore that pain we can be missing the body's most obvious signal that something is wrong.  In most cases, pain is indicating a condition that is treatable, or at least, manageable.  In some cases, chronic pain is indicative of life threatening illnesses, like cancer.  In these cases, a late diagnosis could turn a treatable illness into a terminal prognosis.  When medical professionals ignore ongoing chronic pain they are ignoring the well-being of their patients.  Which seems pretty counter-intuitive to me.

*             *            *             *             *             *            *             *

So why isn't pain taken more seriously?

I'm going to postulate some theories here.  The first theory is backed my quite a bit of research and is something I've written about before.  Most of the examples I have of medical professionals ignoring pain are ignoring womens pain.  Studies have shown that women's pain is taken less seriously than their male counterparts.  Why is this?


Sexism.  I don't think I need to say much more than that.  Those old stereotypes that men are strong and are not allowed to show weakness affect how they are treated when they do.  If a man actually goes to the Dr it may be assumed he must be probably very ill, if not dying.  Conversely, the stereotype of women being hysterical, emotional and oversensitive could lead professionals to downgrade their first hand accounts of what his happening to their bodies.  Until we can push these old fashioned notions out the back door, I doubt we're going to see much positive movement forward in terms of better support of and higher diagnostic rates of womens issues.

       'Easy for you to explain'...

My other theory - based on personal experience alone - is that Drs just do not have time to talk to their patients to diagnose anything other than simple ailments.  I think this is why many people turn to more holistic treatments for help.  At a GP's office, a standard appointment slot is 15 minutes.  At an osteopath, homeopath or acupuncturist the usual amount of time for initial consult is an hour.  I think this is why, in spite of copious trips to the Dr complaining of chronic exhaustion at age 20, it was a homeopath rather than a Dr that thought to test for Epstein Barr virus.  So while the GP signed off on the bloods (because obviously homeopaths can't), I would never have gotten a fairly simple medical diagnosis if it were not for the homeopath asking a bunch of questions no Drs had bothered asking previously.

Basically, I think women's health issues often fit into the 'too hard' basket.  And because they do not have time and work in what is often a high stress environment, GP's will often just prescribe the pill and paracetamol and send us home.  For many gynecological conditions symptoms are inconsistent and not always presenting at the time of the consult*****.  But in these instances, women with recurring pain should be referred on for scans, and if still unresolved to gynecologists or gastroenterologist or urologists until a solution can be reached.  I wonder if the reason this doesn't happen is because the public health system is so overloaded Drs are discouraged from making referrals?  I can't think of many other logical reasons why this would happen.

And my final theory is that women don't always tell their Drs all of their symptoms.  This sounds stupid, but it can be hard to talk about pain - especially in areas we are not exactly encouraged to talk about.  Many of us are raised by stoic or prudish or shy parents.  We are also raised within a society that can't even talk about vulva's accurately.  This, combined with GP's not always asking as many questions as they should, is not a great equation for women's health.  I mean, if you've met me, you'll know I'm fairly forward, relatively educated and big on women's rights.  I still freeze when confronted by most medical professionals because I immediately feel I am somehow less than - unimportant.


And this patronising Dr doesn't make it any easier to want to talk
about vaginal discharge

It feels to me, as though you need to have an education on how the health system works to get any currency out of our current public health system.  Either that, or have private medical insurance and an education in health yourself.  This seems massively unjust.  And while I think a large part of the problem is financial, an equal part is social.  We need to know our rights.  We need to understand our bodies.  We need to feel valued enough to give our pain a voice.

* Just want to say I have had BV countless times and I knew it was not the cause of such extreme pain, but he was the Dr, so I humored him.

** I did get a sombre knowing nod from a female GP once, but no further engagement on the topic.

*** Mum has suffered sharp pain in the same specific place in her abdomen since her final ectopic pregnancy (she had three).  It is very likely given her medical history, that this pain is due to scar tissue forming in that area that has hardened.  Regardless, it has never (her pain) been validated by medical professionals.  She has still not been referred to the the pain clinic, when both of her brothers [pre Auntie Shaz's transition] who also have chronic pain conditions, were sent not long after diagnosis.


**** I think these should be fairly apparent, but just in case they aren't some of these may include anxiety, depression, addiction issues, insomnia, inability to participate in regular social activities, inability to go to work, inability to exercise, inability to participate in a normal family life, inability to exercise proper self care plus a tonne of other things.  Just think about the level of function you have when you are in pain, then try and imagine how that looks when you suffer that much all the time.

***** They tell us to try and come in when pain is presenting, but with long wait times and Drs with busy schedules, this is not always feasible.  And not everyone can just drop everything they're doing to drive to the Drs and wait for an indeterminate amount of time to maybe get some help.  And for those of us who have been disappointed by Drs countless times, it is hard to believe that, even if we do get there on time, it will make any difference in terms of getting an answer.


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