[3W4DW] 16. What are you glad you did but haven't really had a chance to post about?

The first thing that comes to mind is something I've been pleased about for quite a while now, but don't feel comfortable (or perhaps safe? I can't tell) posting about here, though I've discussed it with quite a lot of you elsewhere. (Curious? Feel free to ask - on IM or in PM or by e-mail - but it's not going in comments here.)

Other than things I've made the conscious decision not to talk about, I can't really think of things-that-make-me-happy that I don't talk about?

-- ah, no, there we go: neurodiversity and its interaction with community-building.

At this rate, if I ever get denise to write me a reference for anything, it's going to read something along the lines of "Alex does all the tedious organisational shit that everyone else HATES and they get perverse satisfaction from and THANK FUCK FOR THAT, basically."

Here are some things I enjoy doing that Rah and Kat and other staff actively hate, or are time-consuming and lower-priority than everything else on their overfull plates, or:

• tagging dw_suggestions for easier transferral to Bugzilla.
  
• cleaning up feeds to minimise the number of duplicates, make sure everything's pointing at the right place, etc.
  
• running through 'zilla to pull out lists of babydev bait for dw_dev_training.
  
• prodding dw_volunteers into spitting out code tours for dw_dev.
  
• wiki updates, whenever I stumble across things that are wrong/out-of-date/missing and have the brain.

Plus there's the community-building I do outside of active dev-community work - like signalboost, like trying to leave comments on posts more of the time, and so on. That's nice. It gives me a space to get out of my head on the days when I can't get out of my room, and that's incredibly valuable.

... which is a bit of a distraction from my main point, which is this: one of the things I love about DW dev culture is that my neurodiversity, my brain quirks, are not treated as obstacles that need accommodating: the fact that I enjoy these tasks that other people are desperate to offload isn't viewed as weird (at least not in a negative sense...); it's just A Thing that happens to be Really Useful. And that is some of why a diverse volunteer base is a good and valuable thing to have, and why accessible volunteering is good and valuable.

But I'm afraid I'm going to stop that train of thought there, before it turns into the second half of the essay that's currently in the works. ;)

Myths about endometriosis: pain isn't related to location of deposits

It's very true, to be clear, that pain and infertility and extent of deposits are not well-correlated. (This is partly because the standard grading of endometriosis arises from likely impact on fertility, rather than from any other functional outcomes - so one can be infertile with "severe" endometriosis and have very little pain, or have "mild" endometriosis with severe pain.)

HOWEVER. This does not mean that pain is never related to location and extent of endometrial deposits. Unsurprisingly, I've been doing some reading on this today (fuck the establishment, man), focussing on deeply-infiltrating endometriosis, because that's what I have. (I swear, one of these days I'm going to get pissed off enough - and have enough spare time - that I'm going to do a proper literature review, then send it off to my gynae consultant and see if he's interested in a joint publication.)

( Detailed citations and quotations. )

Where things go wrong is when people take paragraphs like this one, from Stratton & Berkley (2011), and determine that all endometriosis-associated pain arises from CNS activity and hyperstimulation/sensitivity of abdominal pain systems, with no link whatsoever to location and type of endometrial lesion:

Many factors can contribute interactively to individual variability in endometriosis-associated pain. Research so far encourages consideration of endometriosis as a chronic inflammatory disease, which, in turn, encourages a multi-therapeutic approach to its treatment (Table III). Furthermore, because pain of any type resides in nervous system activity, research also suggests that a major contributing factor for endometriosis-pain is not the ectopic growths themselves, but rather how sensory and autonomic nerve activity from nerves that have sprouted from nearby tissues to innervate the growths affect activity of neurons in the spinal cord and brain.

This doesn't map at all with my experiences. My endometriosis pain consists of:

• wide-spread pelvic aching/burning (background, chronic pain: this I believe to be associated with overactivity of pelvic nerves)
  
• infrequent stabbing, buzzing, or fizzing pains associated with my sciatic and genitofemoral nerves, exacerbated by but not confined to periods of motion/walking (I suspect this is related to endometriosis growth impinging on aforementioned nerves, as severity and frequency of this pain is characteristically progressive)
  
• ovary-related pain, and cyst-related pain (despite the finding that innervation of endometriomas is usually minimal, "holy FUCK that hurt" is a well-known reaction to bursting ovarian cysts, and I do get characteristic pain patterns associated with ovaries with known cysts in the run up to bursting - particularly, the pain is similar to the pain upon bursting)
  
• adhesion-related pain: tugging and burning associated with surgical incisions and known adhesive wossnames
  
• sharp burning pain very obviously localised to endometrial nodules in my rectovaginal septum (seriously, it's kind of hilariously awful when several of them set off at once)
  
• probably some more that I'm forgetting at the moment.
  

Key points

• of the three types of endometriosis (peritoneal, deeply-infiltrating, ovarian/cystic), DIE is the only one consistently associated with severe pain
  
• endometriosis-related pain appears to consist of both non-localised widespread pain not associable with specific deposits, and localised pain that can be well-correlated with (particularly DIE) deposits
  
• in patients with DIE, pain distributions pre-surgery can be a useful indicator of deposit distribution
  
• "we don't know why adhesions are painful for some people and not for others" does not mean "it's not adhesions causing your pain" (c.f. Mueller et al., 1995)
  
• in patients with DIE, it is entirely plausible for severe, localised pain to have a causal association with particular endometrial deposits, though in most cases it does not
  
• distribution of lesions does not generally correlate well with reported pain (i.e. many lesions are not associated with pain); however, no-one has demonstrated that specific localised pain isn't associated with specific lesions, and, er, I kind of demonstrate that kind of association
  

I suspect at least some of the confusion arises from the definition of "chronic pelvic pain": I completely believe that my widespread, burning, "background" pain has nothing to do with individual, identifiable lesions. However, my pain spikes - sharp, localised pain - is very different in character, and I suspect is frequently glossed over in these studies: I certainly didn't come across any explicit references to this type of pain.

In any case, I'm pretty comfortable saying that my pain doctor was wrong, and I am mentally composing an extremely polite letter to the tune of:

As discussed in our appointment, I feel much better equipped to manage my pain when I am well-informed about the related biological processes. To recap, I have widespread deeply-infiltrating endometriosis, with complete obliteration of the Pouch of Douglass and significant palpable nodules in my rectovaginal septum. During our conversation, you explained that my pain no longer had any relation to the physiological reality of location and distribution of my endometrial deposits. I'd really appreciate it if you could explain the apparent inconsistency between this statement and the findings of [HAVE A HUGE LIST OF REFERENCES :D].

I AM A DOUCHE.

Glossary
CNS: central nervous system
CPP: chronic pelvic pain
DIE: deeply-infiltrating endometriosis
dyspareunia: painful sexual intercourse

(NTS: Ford et al. 2004 are useful on the topic post-operative results of radical resection of rectovaginal endometriosis.)

sheep per square kilometre

WALES
20889 km²
8.9 million sheep (as of 2012)
... 428.3 sheep km^-2

NEW ZEALAND
268680 km²
30.1 million sheep (as of 2011)
... 112.0 sheep km^-2