cut it out

During my lengthy visit at the neurologist’s last week, the nurse and I had much occasion to chat.  One topic, my not good nutritional status on account of the daily diarrhea, was discussed.  I mentioned that I am hoping that the hysterectomy will help at least a little with it, because maybe the endo and adenomyosis is – well, irritating my bowel.  I had some rectal implants (although those I think are more the pain on sitting down/pain with sex presenting ones rather than the non-stop intestinal cramping and pooping), so it’s not like my theory that my intestine is being shall we say “disturbed” by the endo and the enlarged uterus is way out there.

“I wouldn’t count on it” she told me.

And this is representative of the response I’ve received for a long time.  I distinctly recall the turf war between GYN and GI the time I was admitted for what turned out to be a ruptured ovarian cyst when I was 20.  Because I presented with what seemed to be mostly bowel symptoms (plus pain, which was attributed to a GI cause), I was admitted to GI.  But then they did the ultrasound.  Oh, well, in that case put her on the GYN service.  Except they were strangely reluctant to have me it seemed.  I waited on my unit for orders beyond the admit ones for a day.  And no, it wasn’t a holiday so that doesn’t explain the absence of doctorly involvement.  And yes, we’re talking no orders as in no diet order, no order for my routine meds.

After my lap in 2007, I let my current GI doctor have it.  I was pissed that he hadn’t even considered endo on my bowel as a possible origin for at least some of the bowel symptoms.  At that time, I had been struggling to keep weight on after a big drop down from 145 lb to 113 lb.  When the OR report showed endometrial implants on the rectum and intestine, I was livid.

And the sad truth is, I still don’t have a good, integrated approach to the way that the endo interacts with my GI system.  I have said repeatedly that the bowel symptoms do change with my periods, but in vain.  My discussion with Neuro Nurse was just another example of this isolated, overly reductionist approach to what I guess I’ll call “pelvic health” for lack of a better word.  There is a heavy element of sexism involved in the approach, but I think that is overlaid on the “-ism” form of medicine that is so common.  I ran into this studying psychology and cognition too.  The notion that brain systems and behavior can be legitimately studied and described as isolated units.  The old version of that would be phrenology, which fell out of fashion for a time only to be revived in a dressed up form when in vivo cortical mapping became a possibility.  So we talk of brain areas that “control” this thing or that.  When we arrange research protocols, which will eventually inform clinical diagnosis and treatment, we allow this reductionist approach to guide how and what we look at.  There is discussion within the community of the fallacies and pitfalls of this approach, along with even a sometimes “aw shucks, what can we do?” sort of acknowledgment that practicalities sometimes dictate an overly narrow window (or windows) of where we’ll look and what counts as “activation” or involvement.  But when you boil it down to the practical measures of how bodies are considered, studied, and acted on, the degrees of caution that such massive and often sketchy assumptions should seem to suggest (if not dictate) seem to be entirely abandoned.

And this is why I made a lousy researcher.  I was always too concerned with the “but what if” aspects.   “What if I look only at this measure and it turns out that measure is important too?” “What if this effect only shows up in this artificial condition and is not actually generalizable ‘in the wild’?”  A girl could drive herself nuts that way, or at least drive herself to constantly tweaking and retweaking a research protocol rather than just saying “ah the hell with it, this is good enough” and collecting data.

But that was, as they say, “academic”.  And in academia, you publish or perish.  And to publish, you need razzle dazzle significant results, which means often you just bite the bullet and collect your possibly impoverished data, write it up (and if you’re a good, careful person, put a “limitations of this study” section in your discussion section), and send it in.  I would hope though that the people whose jobs depend on rolling that research into practice would understand the (often unstated) caveats of applying what happened in controlled, “publish or perish” driven contexts to a real live complicated integrated person.

I’d hope.

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