kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
i.e. hello everyone, I am home again and have been for some time, [personal profile] shortcipher has taken excellent care of me, North Middlesex Hospital continues to exist in the centre of a desolate hellscape as far as public transport to anywhere useful is concerned, etc.

Slightly more detail. )
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
(Motivated by the fact I've had this conversation with several people in the last few months.)

That's a slight overstatement, but honestly not much of one: periods shouldn't hurt so much that they impair your normal function. The idea that "everyone gets cramps", or that you're making it up, or simply not tough enough, is toxic nonsense.

Endometriosis is reckoned to affect approximately 10-15% of people who menstruate. It's pretty much the most common cause for painful periods, it's way under-diagnosed, and last I checked the diagnostic delay in the UK (between when you first tell a healthcare provider about symptoms and when you actually get the diagnosis) is about ten years.

So: hurting so much it impairs your function is really not normal. Under the cut is a discussion of a bunch of other stuff that isn't normal and might be indicative of endometriosis, and some suggestions about how to approach medical professionals on the topic.

Read more... )

Here, for reference, are the NICE recommendations relating to endometriosis.
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
International travel on the first day of my period is such a uniquely horrible experience that I can remember every single instance of it. Today's shaping up to be a good one: after a sensibly early night, I woke up a little before 4 in enough pain it was half an hour before I managed painkillers, whereupon I necked 100mg of tramadol on an empty stomach and it just about took the edge off. I can't actually tell to what extent the persisting significant wobbliness is pain, sleep dep because of the pain, an opiate high, or not having eaten enough yet because sertraline. FUN FOR ALL THE FAMILY.

*facepalm*

Nov. 3rd, 2014 01:58 am
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
Worst period pain in ages: yes, self, that is because you are currently on less-than-half-dose ibuprofen (because mefenamic acid supply problems; because insufficiently regular GP appointments; because lack of executive function/stubbornness combining to (1) prevent making a sooner appointment and (2) prevent buying more ibuprofen).

Really truly honestly there are reasons you are on every single med you take, really, and skipping any of them leads to you feeling worse, and that is why you still take them even though you resent it. Make NSAIDs a priority in tomorrow's GP appt, yeah? xx

-

Apr. 10th, 2014 05:31 pm
kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
I think the controlled fall I took from my chair at the dining table to the floor twenty minutes ago (& still no signs of wanting to get up) 1. validate my decision to not try leaving the house today and 2. particularly validate my call that spending at least half an hour standing up handling HF would be a Very Bad Plan.

Meanwhile, still no news from the dwp.
kaberett: a patch of sunlight on the carpet, shaped like a slightly wonky heart (light hearted)
[personal profile] naamah_darling's launched a new blog: "I want to show people what living with my mental illness is like. Visibility is a major factor in reducing the stigma that surrounds mental illness. For many people, though, it’s risky talking about these things, for having “crazy” be the first thing people know about you. People have to keep themselves safe, and many cannot speak out."

And, you know, there's all sorts of reasons I think it's very important to talk - and talk publicly - about mental illness. So: hi. I have chronic depression with anxiety; I've been depressed at least since I was thirteen. I strongly suspect I also have undiagnosed PTSD.

I started medication when I was 21, because I couldn't put it off any longer. I'd delayed seeking diagnosis for so long because of the stigma: both medically, in that it would have been even harder to get my chronic pain diagnosed if doctors could happily dismiss it as somatisation, and socially/academically. As it is, I took a year out of my undergraduate degree, and every time someone asks about it I have to decide between the bland and anodyne "for health reasons" and the braver - and more informative - "I went very, very mad".

Crazy is a thing I am. It's a thing I can't hide, even if I want to: ask me, maybe, about the times I've suddenly realised, walking through a supermarket or shopping centre, that I've been muttering out loud for several minutes. Or, well, ask me about the way it impacts on my work.

But: "crazy", being crazy, isn't the bad thing here, particularly: it's hard, some days or weeks or months, but I am medicated and I have people and I have a counsellor and mostly, for the time being, I'm alright.

The bad thing is the way people react to "crazy": the way that in trivialising it they trivialise me, or that in fearing it or despising it, it is me they fear or despise, or that in being visibly crazy in public I put myself in danger - and in more than one sense this is not something I can control.

Here's another thing: it feels very strange to say "I am depressed" when my medication and support network are currently keeping me functionally not-depressed [most of the time]. But: I have endometriosis even when I'm not in pain; I have endometriosis even when my painkillers, or my GnRH agonists, or whatever, are working. And I am aware - and sometimes it is painfully, desperately aware - that the only things between me and my illness are my daylight lamp and 30mg a day - forty in winter - of citalopram hydrobromide. Like [personal profile] jjhunter says: and 'history of depression' means there's no defense/perfect enough to keep it from coming back; like Onsind say: yeah it gets better / but it also could get worse / tainted blessing, stubborn curse / and all the same, you just take it day by day (by day by day).

And that? That is why I am going to keep on talking.
kaberett: Photo of a pile of old leather-bound books. (books)
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.)
kaberett: A sleeping koalasheep (Avatar: the Last Airbender), with the dreamwidth logo above. (dreamkoalasheep)
9. Are there two people on your reading list that you think should meet?

I am grumpily unconvinced by this one - I think public introductions are incredibly high-pressure and generally a rubbish thing to do to people - and even a list of people I think are awesome and worth subscribing to inevitably means I will miss people off. SO INSTEAD let us have a tiny subscription meme: introduce yourself in one alliterative sentence (if you feel like playing a game, and don't bother with the alliteration if you don't) and then feel free to expand (minus the alliteration) in conversation. I like it when you lot talk!


I am teeth-grinding and nightmaring and insomnia-ing. Slightly to my surprise, this appears to be the form my pre-period mood crash is taking this month; "surprise" because I'm not used to it being this mild. On the downside, this means that back-of-enveloping it, I'm... kind of due to be in pain and misery during Finals, but hey, what can you do, if I'm lucky stress and the vagaries of a slightly irregular cycle will see me through, and if not I shall just take LOTS OF DRUGS.

... nope

Mar. 5th, 2013 10:05 pm
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
... that is the last time I am ever cooking quiche & chips from scratch while my period starts.

(Tasty, though. Quiche contained: one leek, one stick of celery, one onion, half a bulb of fennel, nutmeg, goats' cheese, milk, egg, pepper. And I am now flomped back in my room, while my charming houselot will supervise washing up & getting the jam tarts out of the oven...)
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
  • clitoral neuropathy is deeply, DEEPLY unpleasant. (On the plus side, so far it's only happened once, & very briefly!)
  • because of Reasons I'm walking places at the moment. Walking to lectures & getting the bus back (1 mile total) is (a) causing three-hour naps, and (b) starting to really, really hurt, predominantly in my right hip, after about 50m, even with two sticks
  • ... want my wheelchair back
  • ... Pain Clinic appt on the 10th of April
  • the cyst on my left ovary is grumbling away to itself in ways that suggest I'm going to get it exploding horribly at some point in the next couple of months


Have upped my paracetamol to full dose again (I'm routinely at half-dose these days) for the time being; we'll see how it goes...
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
[Original post, 24th Jan, LashBlog.]

I'm choosing to repost this content here because of the terrifying news that it's been recommended that tramadol be upgraded to a Class C drug. I spent five years being routinely disbelieved by everyone about the amount of pain I was in, because I could go from "normal" to "can't speak in complete sentences" in a matter of minutes, and the only outward sign that anything had changed would be... not being able to speak in complete sentences. So I was making it up, right?

Well... no. And like I said elsewhere earlier today, in the UK it seems to be much easier to get hold of a prescription for neat codeine if you're able to rock up to your GP and say "So, I've borrowed some spares from a friend; I've been taking [dosage] and have noticed [xyz] improvements in function and quality of life. Could I have a prescription of my own?" Than if, say, you just show up and say "I've been a responsible citizen but maybe this will help?" I'm currently going through a similar phase with temazepam: I've taken 30mg this calendar year (and therefore ever), in three doses, and it's been enormously helpful. When I asked a GP for it, without disclosing I'd already tried taking it, I was told that it was awfully addictive, and that there were concerns about drug interactions. Sooner or later I'll get around to being pushier about it - and, yes, I choose that word advisedly.

Fundamentally, I consider anything that makes access to adequate pain relief harder a bad thing. Criminalising responsible drug-sharing makes access to adequate pain relief harder, and is a massive issue in terms of common behaviours among people with chronic pain that I've had this discussion with. This is not a good plan, and I'd really rather it didn't happen in my country.


The pursuit of life, liberty and happiness. )
kaberett: Photograph of clementine with perplexed face drawn on. (clementine)
  • one official diagnosis of neuropathic pain
  • one referral to a pain clinic
  • one "there's not much more I can do to help you other than more surgery", said with appropriately dubious face
  • two recommendations for endometriosis specialists in London...
  • ... and one story about their sex lives.
kaberett: A pomegranate, with eyes and mouth drawn onto masking tape and applied (pomegranate)
(a) [twitter.com profile] SexPositiveLad is AMAZING.
(b) ... I think I've been using a Mooncup for over half my menstruating life. I am a little disconcerted. BUT I WOULDN'T HAVE IT ANY OTHER WAY.

(At some point, I need to do some serious research into menstrual cups & endometriosis: my gynae consultant claimed cups "might" make it worse, presumably via the mechanism of increasing retrograde menstruation, but he hadn't ever met a cup before as far as I can tell[1], and I can't off the top of my head see any way in which the risk of retrograde menstruation would be increased by using a cup over pads even if you accept that retrograde menstruation is a cause of endometriosis: it's a prevailing theory and one I'm dubious about.)

Footnote; trigger warning: possible sexual assault, medical setting. )
kaberett: A pomegranate, with eyes and mouth drawn onto masking tape and applied (pomegranate)
  • [TW: POTENTIALLY DISTRESSING MEDICAL DETAIL] My period started yesterday, and all that gave it away was a mild ache in my lower back. This when I'm only on half dose of paracetamol - I successfully halved it several weeks ago, and unlike every other time I've tried doing so I didn't go back up to full dose after three days. So: either the amitriptyline is really doing its job, or I'm getting less pain... which would be a good thing, except that I suspect it's indicative of progression of nerve damage. ON THE PLUS SIDE, if it is progressive nerve damage this means I might be rid of the labial neuropathy one day. On the down side, that would be due to paralysis (yes, that is a thing endo can do). Er.
  • QuantumGIS. Unlike ArcGIS, it's not $2000 a licence, and it has useful help files. (Arc? Arc's manual says really cheerful stuff like THERE IS THIS THING YOU CAN DO IT'S SUPERCOOL BECAUSE OF REASONS LET ME TELL YOU HOW AWESOME IT IS and, er, never tells you how to do it.) Unlike Arc, it runs on things other than Windows. UNFORTUNATELY, files created under Windows that run perfectly fine cause, um, silent but immediate crashes of the entire sodding program when you try to open them under a Linux install. ... I was sad.
  • One of the things I did today was, er, write a (fairly polite) e-mail auf Deutsch to, er, the suppliers of my wheels. Based in Germany. Whose. Manual. Is, ah, provided in multiple languages, because that's helpful. ... the English and the German are mutually contradictory - somewhere along the line "nun" got translated as "not", rather than "now" - and I'd be inclined to chalk that up to a typo apart from some of the truly egregious other mistranslations.
  • ... hold on is Buffy actually a series about Joss' ideal Manic Pixie Dream Girl oh dear goodness it is isn't it that's really rather distressing
  • In which I explain why I'm a bit of a disaster:
    see I have a very great weakness for men who look good in formalwear while flirting with femininity and who will be _really wry_ at me while being musical
    ...
    they don't have to be men though
    ...
    sorry that was probably tmi

  • Custard. Isn't it the greatest?
  • Basil in raspberry trifle turns out to work really well.
  • How am I supposed to get chilli plants to fruit, anyway? Like, I've got the flowering down, but the fruiting not so much.
  • Corsetry! Isn't it great, though? And oh boy I am enjoying being secure enough in my gender presentation (for all that I am PERMANENTLY MISGENDERED) to feel okay about that one again.
  • Genitalia! Aren't they weird? Like, just sort of inherently? Not as weird as knees, obviously, but Pretty Bizarre nonetheless.
  • I'm feeling gently guilty about having spent £11 on a teal-taffeta-covered diary for 2013, but... teal. taffeta. How could I not?
  • I really, really enjoy spending time with my mother.
  • Beds are great.
  • I've been wearing that jacket, with all of the pins and so on on it, really quite a lot, and - every time I have the kind of interaction in public where I am Wearing That Jacket and Wearing My Docs and generally being a Pretty Stompy Queer Crip? But I am also polite and friendly and personable and thank people? I... kind of feel like I'm ~activisming~, in microcosm, in ways that are kind of terrifying but kind of exhilirating too. Does that make me weird?
  • I was whinging to pretty much anyone who'd listen about the Really Weird Looks I get for carrying my 30kg wheelchair up stairs at wheelchair-inaccessible Tube stations, and when it was Boything's turn he suggested I get a t-shirt that's plain on the front, with PART TIME CRIPPLE on the back (so it's only visible when I'm not in my chair). I... am very tempted to start making and selling those.
  • Relatedly, few things are more irritating than people ignoring my "no thanks, I'm fine, honest" when I'm trying to get my chair up stairs, because (a) that thing is heavy (b) most of the weight is in the back wheels (c) there's a REASON I'm keeping the back wheels on the steps (d) if you lift the back wheels OFF the steps and then move faster than I comfortably can, you ARE making things more dangerous, you ARE increasing the likelihood I'll trip and fall, and you ARE standing between, have I mentioned, a thirty kilo wheelchair and gravity, and that is a bad plan
  • That bit of ranting aside, I'm actually really cheerful. Sorry for taking up ALL YOUR READING PAGES today, darling subscribers. And do let me know about that one disasterfic. <3
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
... I really, really do.

But today, as on so many other occasions, I am left wondering how in hell anyone who isn't incredibly pushy and middle-class manages to wring anything out of them when it comes to long-term conditions. Just. Wow.
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
[content note: depression, gentle whinging]

Robert Frost, My November Guest. )

The thing that irks me most is not, as it turns out, this shattered prison, after all. I have said this before and probably I will say it again: mobility aids? Fine, good, you might be able to walk but I can do wheelies, etc. Pain? Eh, I've learned to live with it.

What I cannot stand, however, is this wretched foggy blanket, this muffling, this dragging sadness that catches at me (unawares) and can be staved off for a moment, for a while, by surrounding myself with people - at the cost, later, of exhaustion and increased susceptibility and the bedrock certainty that everything I have said, everything I have done, every tiny movement, every breath, has served to alienate the people I am clinging to.

These days I know that it will pass, and that it will pass soon, but I also know that the only thing I can do about it is grit my teeth and hurry up and wait.

J.J. Hunter, What I mean when I say 'depressed'. )
kaberett: Grinning emoticon. (:D)
My current daily pain relief regime looks a little like this:

mefenamic acid 3x500mg daily
paracetamol 8x500mg daily
buscopan 3x10mg daily

diclofenac gel (as and when)
codeine (as and when)

I've done a shitton today. I've co-run a social; I've done a lot of errands in town; I've hung out with some friends; I've played a game of Scrabble and not done too shabbily; I've turned my mattress and generally reorganised my room a little and done some paperwork.

I've also taken 75mg of codeine, applied the diclofenac gel liberally four or five times, and contemplated faffing around with my TENS machine.

... it's the first proper day of my period and I can DO STUFF. I've been stopped in my tracks by the pain pretty frequently nonetheless, sure, but do you know what? What I HAVEN'T been is curled up miserably in bed all day.

This is kind of magic.
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
Oh, luteal phase. Oh, progesterone uptick. Oh, depressive downswing.

How I didn't miss you.

Medication review tomorrow, at which I will also get results of LEAST COMPETENT BLOOD SAMPLE EVAR. In general, the citalopram seems to be mostly doing a reasonable job of bringing my background mood up to "cheerful"; unfortunately 20mg doesn't seem to be enough when lolprogesterone. Unfortunately more than 20mg per day is contraindicated by the fact that I'm taking 20mg of omeprazole a day. Unfortunately I can't stop taking the omeprazole because of my long-term painkillers. Unfortunately, the citalopram might be making the painkillers less effective.

...

... on the plus side, I've just finished Braid, a game with a delightful time-travel mechanic and a REALLY OBNOXIOUS PLAYER CHARACTER. Luckily, you can mostly ignore the back story. (And I only cheated on two puzzles!)

(Other things I have played recently and heartily recommend apart from inevitable heterocentrism: Machinarium, an adorable steampunk point-and-click.)

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