(no subject)

[kaberett]

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.

Comments

[davidgillon]

Ugh, thinking virtual coping spoons in your direction.

Fingers crossed everything else is trouble free.

[rmc28]

:(

[dynamite_lady]

Mucho sympathy. Thought I had it bad just managing around events in my home town, so this sounds like hell. :-/

[kaberett]

Thankfully it is calming down some!

[hilarita]

Phew. I am extremely thankful that I can take drugs which mean I have a period 'off' switch. I haven't had a period in years. I can remember the feelings, and you have much sympathy and virtual tea. Also, I hope you can sit down soon, and eat something, which will probably help. Also, best wishes for being in noisy confusing places like airports - all my wossnames go out to you till you're somewhere you feel more comfortable.

In other news, I'm taking the train west later; I'm spending time in and around Jodrell Bank this week!

[hilarita]

Also, have a good trip.*

* applies to actual travel and to opiate highs :)

[jelazakazone]

Are you traveling today? I am glad it is calming down. Traveling on one's period is never pleasant, let alone internationally.

[alexseanchai]

Oh yugh. Sympathy!

[403]

Much sympathy and pain relief to you.

[catyak]

Is the destination worth it?

[silveradept]

Bleurgh. That's awful.

[pipisafoat]

hello this is definitely not time-sensitive so enjoy your trip and get back to me whenever you have the time and inclination and spoons but I am commenting here before I forget:

I have some endometriosis questions! I would like to ask you them. I would also like to ask others them; is there an endo group on dw you would recommend or elsewhere or do you have a secret collection of cool people with endo experience who wouldn't mind questions? (answers of no are of course fine. or "ask and i may or may not answer" also fine.)

[kaberett]

The endo group on DW is quiet and a bit trans fail-y if I remember right. But try me!

[pipisafoat]

okay so I'm not actually formally diagnosed because I can't stand to (a) do more medical testing than I find necessary and (b) show off my genitals to more people than I find necessary, and my gyno won't formally diagnose without transvaginal ultrasound, so it's just "strongly suspected endometriosis" for me but i figure(d) that since birth control (mostly) takes care of (most of) my symptoms (most of the time) i'm okay. especially since i'm on a birth control that drops me to a period every 3 months instead monthly. (also, i just, i have to trick myself into "this is endo meds" literally every morning to be able to swallow that little pill, not because of pill issues because i can dry swallow a handful no problem but because oh my god i am willingly putting female hormones into my not-female body sorry i just had to say that to someone who might actually understand)

anyway, my questions! (warning: i am now going to be explicit about my body and its functions, including defecation, menstruation, urination, and maybe sex if i'm brave enough to talk about that yet or maybe that'll come later)

mostly my pain is manageable without medication (which is great because of med interactions), excepting times of The Bleeds, wherein:
- every shit is so painful i cry
- some days i cannot walk because it hurts so bad (this is much better with the BC but i still can do a very good worm impression to the bathroom)
- etc etc pain, ridiculously heavy bleeding, etc etc
Question the first: aside from meds (i take more than i should and ride a fine line between "killing my liver and knocking my brain out of my skull in a permanent way" and "functioning") and heat of various delivery methods (can't do because my body can't regulate body temperature and i pass out), do you have any ideas on how to help with the pain?
(during the bleeds i actually have to set an alarm to wake me up after 4 hours to change my pad, the bleeding is that much. before the birth control, it was every 1-2 hours. awake or asleep. terrible terrible terrible.)
(and my mother says "in my day we just dealt with the hand we were given. i don't know why you take birth control." *eyeroll*)

Question the second: whilst on The Bleeds, I actually have less pain if I do not fully empty my bowels, which is also nice because of the pain of shitting, but what the hell? is that a normal thing? how does that even make logical medical sense body what are you doing seriously what

Question the third: during my normal, non-bleeding life, I find that I often am not given correct signals by my body regarding my bladder. It is much more likely to send me pain signals or no signals at all when filling until it's like "oh yeah, btw better get to a toilet or you're gonna wet yourself" except that I have learned that pain spikes sometimes just means I need to pee and also (because maybe i can't practice anymore but i'm still an occupational therapist in my heart and in my head) because I stick to a rough toileting schedule (like we do with incontinent patients to establish routine for the bladder and reduce incidences of incontinence and there's SCIENCE behind it and all but it's still really frustrating and much more difficult when working, which means now it's easy lolololol only thing made easier in my life thanks)
anyway. pain signals instead of full bladder signals. Knowing that I have dysautonomia manifesting in at least two other ways, I don't know if this is just another brain thing where my CNS can't understand what the signals are and so default to pain or if this is an endo thing where, idk what would cause that.

question the fourth
is difficult and also compounded by a lot of various intersecting identities
but if i can cut those out and just speak of the physical:
penetration = extreme pain. even with copious lubrication. even when in a loving and consensual and not medical and awesome relationship context. and by extreme pain, I mean for several days and also crying (and honestly i cry fairly easily over emotions but broken fucking bones just make me rage and like other wounds i'm like "ooh look at the various layers of skin you can see in this cut, yes i know it's bleeding but shut up i'm geeking out" i think i have cried in pain over genital things, the time my father didn't believe my leg was broken and grabbed both sides of the break and wiggled it "to be sure", and nothing else comes to mind).
my (former) gyno recommended that i stretch myself slowly over a period of time to accommodate
never mind that one of my own fingers (and they're normal sized as fingers go if not on the small size) gives me that same amount of pain and i cannot think of a single smaller thing i would trust inside my body
and that the first like half inch to an inch is okay with much larger widths (shut up i experimented okay i needed to know what the fuck was going on with my body) but anything deeper than that is "i would rather die than experience this pain"

do you have any advice for that
eta: largely i deal with this by sobbing through yearly exams necessary for continued birth control and do not engage in sex that includes penetration of me, but it is an option i would like to have if there's something reasonable to make it happen. but if it's like "major surgery your insurance totally won't cover!" then no thanks, i'll stick with what i do now.

(do you experience any of these things?)

long commment is long, i understand anything you wish not to answer and apologize for the details of my body you may wish you didn't know, etc etc and advance thanks for anything you do have to say.
also that i love you a lot and i consider you one of my best friends, that's a thing you should know and i don't know if i've ever actually explicitly said that so.

and now to bed with an oddly gassy dog. true love: burying your face in a pillow and letting the rancid dog cuddle up with you anyway.

[kaberett]

OKAY SO.

First. Ultrasounds cannot diagnose endometriosis. The only thing an ultrasound can do is suggest that you don't have e.g. PCOS. Endometriosis does not show up on ultrasound. The only way to get a definitive diagnosis is laparoscopic surgery with path studies on removed material.So I have no idea why your gynae's taking the attitude that they are, because it doesn't make any sense. (I have stage IV endometriosis - I will always have stage IV endometriosis until I have major abdominal surgery - and ultrasounds look normal.)

Second: yes, if you can tolerate HBC it's the standard first-line treatment. I can't take any of it (progesterone --> depression, oestrogen has bad interactions with migraine-with-aura) but if it's working for you? Yeah, cool, that's endo medication (and, for the record, given your description of the rest of your symptoms? yeah, you've got endo). (And yeah, I completely get being incredibly reluctant. <3) Pain on defecation indicates bowel involvement; pain on walking depends on the type but it's entirely plausible that you're getting lower limb nerve function affected in addition to the abdominal stuff; ye-aaaaah.

Question the first: aside from meds (i take more than i should and ride a fine line between "killing my liver and knocking my brain out of my skull in a permanent way" and "functioning") and heat of various delivery methods (can't do because my body can't regulate body temperature and i pass out), do you have any ideas on how to help with the pain?

Honestly, what I do is a combination of:
- mindfulness
- mobility aids (I can keep moving through more pain while wheelchairing than while walking...)
- every single fucking med. Specifically, I'm on continuous paracetamol/acetaminophen (2-4g per day depending), NSAID (mefenamic acid, 1.5g/day currently), buscopan (an anti-spasmodic, 10mg with each meal), and amitriptyline (25mg/day, also helps with sleep regulation). Also: topical anti-inflammatory gel (ketoprofen/voltarol/ibuprofen/etc), codeine.
- TENS machine
- arranging to not have to move

If I had to pick one of those? Amitripyline. Made by far and away the biggest difference to me. But it's a TCA, has lots of interactions, and is obviously gonna be expensive for you. :-/

Question the second: whilst on The Bleeds, I actually have less pain if I do not fully empty my bowels, which is also nice because of the pain of shitting, but what the hell? is that a normal thing? how does that even make logical medical sense body what are you doing seriously what

fuck knows, bodies are weird, this is quite plausibly something to do with your bowel being stuck to things it oughtn't be (mine's entirely connected to my uterus!) in ways that mean that totally emptying it pulls it around into a new position suddenly (ergo PAIN). but yeah this doesn't sound abnormal given the probably-endo.

Question the third: during my normal, non-bleeding life, I find that I often am not given correct signals by my body regarding my bladder. [...] anyway. pain signals instead of full bladder signals. Knowing that I have dysautonomia manifesting in at least two other ways, I don't know if this is just another brain thing where my CNS can't understand what the signals are and so default to pain or if this is an endo thing where, idk what would cause that.

Right this is entirely plausibly a chronic-abdominal-pain thing such that nerves just... don't know what the fuck they're doing any more? Like, specifically abdominal pain affects that. And it might also be that you've got bladder involvement in endo such that scar tissue is getting tugged on as your bladder fills, which is also gonna cause problems. So... yeah, lots of plausible explanations, definitely

question the fourth: [pain on penetration]

Yes, this is called dyspareunia. It's completely normal with endo and is to do with endometriotic/scar tissue growing in vaginal muscle walls and potentially scar tissue causing constriction. I honestly have no suggestions for this, I'm just hoping mine doesn't get any worse. (Experimenting and determination good and involved! Not judging.)

Because, yeah: even with my meds load I sometimes get screaming pain on defecation during period. My bladder is just weird. And it turns out I've been getting pain on penetration for years but I'm incredibly lucky in that turns out it's currently the type of pain that when it occurs, er, when it occurs I interpret it as pleasant. And it is sore and makes walking much harder for a day or so after, but. Yeah.

<333 Sorry that is not more immediately useful; let me know if I can make more words helpfully? xx

[pipisafoat]

I guess the ruling other things out buuuuut I don't care? you're not inserting a thing in me to look at my junk from the inside.

my HBC needs to be changed every year or two to a different dosage or blend of things to continue to manage my symptoms, but it seems to be mostly working. though now I am wondering if the "it feels like this is not working as well anymore" is connected to my huge spike in migraines lately. (cannot really comment on depression because situations + medication changes = ????)

actually re pain on walking: it really feels more like the pulling and squishing of that tiny portion of my abdomen than pain in the legs. although increased weakness in BLE which is interesting especially considering (complex medical history redacted for privacy and irrelevancy). so not so much actual pain in the legs with walking.

I push the limit on NSAIDs, use the mindfulness and not moving thing as much as possible. I have been considering getting a cane actually but because of (complex medical crap and internalized ableism) haven't.

I do recall you talking of interpreting the pain pleasurably before. that is very lucky of you!

(also another question now: clots during the bleeds. obviously even small ones are incredibly painful because it's like penetration, something is trying to stretch what ought not to be stretched. HBC cuts down on this for me but does not eliminate it. also, aside from being really fucking painful, it's weird and feels really gross to me. even just thinking about it makes me shudder. is this endo related, the having clots, or is it just lucky me? my plan with next gyno is to try to convince them that we just need to stop the periods completely, this reduction is nice but maaaaaaaybe if we stopped i'd be a bit better off! unfortunately it has been determined that t is really really dangerous for me to consider because of my brain but there are other ways, i am pretty sure, and i am all for exploring those options.)

that is actually very useful. both in validation and in commiseration (i was gonna say "comradeship" but idk if that's really what i mean but neither is commiseration). and i will talk to my doctor about these meds you have mentioned to see if any of them are safe for me to try . can't do TENS because of my brain. (my brain cannot handle: repetitive sounds, vibration (including bass that you can feel), electricity of any sort, or being near a fax machine while it's working. nobody understands the last but it's a clear seizure trigger! woooo brains.)

i might talk more about the sex somewhere else another day but i'm busy arguing about privacy now. which is weird because i am arguing the other person's right to privacy and that i cannot be trusted at present with their passwords and such because i will violate that privacy and the other person is arguing that i am allowed to violate their privacy and ... it's weird.

[pipisafoat]

(i am in the week leading up to the bleeds now and my body is like "heyyy now's a great time to randomly pass some clots but otherwise no spotting or anything, and how about a bit of diarrhea? just to give you something to look fondly back on when you are sobbing during a shit next week.")

oh god that means i'll be on the bleeds when The Extended Family is here for independence day cookout "celebration" fuck everything
then again maybe it'll convince them if i'm semi-visibly disabled.
fuck. everything.
(except me. because no thanks.)
(although now i wonder if anal penetration would be terrible or fine. it is too bad ~things for not here~ on So Many Levels.)