kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett
(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.

Questions to ask:
  • How much does having your period impair you relative to (a) your normal and (b) other people's normal? Particularly if you get pain that inhibits your ability to walk, stand, sit, or talk, that's not normal and not okay.
  • Has your period pain got steadily worse (in intensity or duration or both)?
  • Has your pain spread over a wider area?
  • Does it hurt to go to the toilet, either urinating or defecating?
  • Does penetration hurt?
  • Do you get sciatica-like symptoms, i.e. shooting pain down the outside of your legs?
  • Do you get genitofemoral neuropathy, i.e. shooting pain down the inside of your thighs or in your clitoris?
  • Do your legs ever go partially numb/do you lose proprioception about where your legs are?
  • What is the character of your pain? Do you get "tugging" pain? "Burning" pain? Sharp pains?
  • Particularly when being penetrated or defecating, do you get anything that could be described as sharp bright points of pain around your rectum/the back wall of your vagina?

Answering yes to any of those questions warrants further investigation, in my opinion. (I have stage IV/"severe" endometriosis; I don't answer yes to all of them.)

If you decide to go to a doctor, do emphasise these symptoms if you experience them and do say (probably repeatedly: sorry) that you're concerned about endometriosis.

There isn't a cure; what can be done is symptom management. First-line treatment is hormonal birth control: the pill in its various forms, or the shot, or the Mirena (not a non-hormonal IUD). The idea is to shut down your menstrual cycle so you experience fewer symptoms: you are completely entitled to ask for continuous HBC (without a withdrawal week and associated bleed). If for whatever reason that doesn't work for you, second-line treatment is putting you into temporary chemical menopause more aggressively, typically via GnRH agonists with HRT to mitigate menopause symptoms. And if that doesn't work your options are surgery (with dubious outcomes; I will expand on this if you're curious) or pain management (which is where I'm at, and which is enormously worth it if only because being constantly in pain is exhausting: if you're tired a lot of the time, that's a standard side-effect of the joy that is an inflammatory condition).

Diagnosis is tricksy. Endometriosis does not show up on ultrasounds, and does not reliably or unambiguously show up on MRIs (I have lots of endometrial nodules in my rectovaginal septum; they're visible in MRI but baffling unless you know what you're looking at). The gold-standard for diagnosis is laparascopic surgery and biopsy of lesions, but getting referrals can be difficult and surgical incisions can provide sites for further endometrial growth -- I'm glad I had my diagnostic lap, but I do now get endometrial-style pain in my surgery scars.

There's a lot more detail that can be gone into, obviously, and I do advocate endometriosis.org as a resource (for all that it's super ciscentric), but the point I'm trying to get at here is: if you're impaired by period pain, that is not normal and is not right and you are not faking it and you are not just being a wimp. I promise.

Here, for reference, are the NICE recommendations relating to endometriosis.

(no subject)

Date: 2015-12-02 05:31 pm (UTC)
redsixwing: Red-winged angel staring at a distant star. (Default)
From: [personal profile] redsixwing
Eesh. Yeah, that fits. (Insert standard rant on totally-effed US healthcare system here.)

I did first present in my teens, and the "we all have a little pain, sweetie" rhetoric had me convinced I was just a wimp for years. (Grah.)

Edit: I am pretty obviously still furious about this. If anyone out there needs a +1 voice or someone to talk to: I'm here.
Edited Date: 2015-12-02 05:33 pm (UTC)

(no subject)

Date: 2015-12-02 06:42 pm (UTC)
redsixwing: Red-winged angel staring at a distant star. (Default)
From: [personal profile] redsixwing
Golly gee whiz, imagine that. >.<

Yes, let us pretend Teh Kids don't know a thing about their own bodies and that pain doesn't matter until you're past the magic age of "you'll want babies some day sweetie."

Or, rather, let's NOT.

(no subject)

Date: 2015-12-02 05:43 pm (UTC)
pipisafoat: a typewriter with a sheet of paper sticking out of it with a large heart on it (Default)
From: [personal profile] pipisafoat
I'm pretty furious about a lot of medical things currently. let's be fury-buddies! grr arg medical incompetence! especially WILLFUL MEDICAL INCOMPETENCE LIKE IGNORING PATIENT REPORTS OF SYMPTOMS.

(no subject)

Date: 2015-12-02 06:40 pm (UTC)
redsixwing: Red-winged angel staring at a distant star. (Default)
From: [personal profile] redsixwing

(no subject)

Date: 2015-12-02 08:19 pm (UTC)
lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
From: [personal profile] lizcommotion
I need a drawing of fury-buddies. I really do. swooping down on condescending "it's in your head" asshats. yes.


kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

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