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)
pipisafoat: a typewriter with a sheet of paper sticking out of it with a large heart on it (Default)
From: [personal profile] pipisafoat
do you lose proprioception about where your legs are?
*rethinks entire life* did not know that. i have that most of the time but yes more during the bleeds.

I'm having the lap two weeks from tomorrow (!!), and my doctor is also putting in the Mirena. (I have very good response to HBC with 3-month continuous (but not monthly and not actual continuous), but my body adapts in approx 10 months and it stops helping. I have literally run out of HBC pill options at this point. we are *hoping* that the Mirena will not do the 10 month thing, but if it does, there is talk of chemical menopause or surgery. seriously, all the fingers crossed that Mirena will last longer than 10 months, and YAY HOORAY HUZZAH for a gyno who didn't put me off and off and off but instead the first time I met her when I talked about the pain and said "I am concerned about endometriosis and honestly sick of trying a new pill that's really just a repeat of one that has already stopped working", she was like "okay, let's schedule the surgery and try the Mirena and go from there.") (10 months. like fucking clockwork. that is actually the strangest thing to me.)

(no subject)

Date: 2015-12-02 05:40 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
thanks! I expect it to be easy, because all I have to do is sleep through it. (hee. really though I tend to become nauseated from not eating when having to fast for anesthesia, and that's really shitty. but i have experience in handling that best and will stock up on the things that solve it fastest for me, which tend to be pretty counterintuitive apparently. so it's just sleeping and then eating right-for-me regardless of what the doctors recommend following anesthesia.)

legs: in my case though there's also the "you have CNS issues that aren't really fully understood" that tends to absorb shit like "i think my legs have wandered away to dance in the corner without me."
like, if you're gonna lump shit under that vague category at the first sign of there not be an immediately obvious reason, can you at least still be trying to figure out WHAT IS WRONG WITH MY BRAIN instead of just lumping it all together and then IGNORING it? ugh doctors. tomorrow I have an echo but if it comes back normal, which I suspect it will because they always do even though my EKG gets progressively worse, my heart problems (as proven by EKG and vital signs monitoring and self-report of symptoms) are going to get lumped under CNS and then ignored, too. because apparently if there's nothing STRUCTURALLY wrong then you're MAKING UP THE SYMPTOMS. fuck that. frustration bordering on hatred for the entire medical field (which is funny because i self-identify as being a part of the medical field) for this sort of bullshit. fuck. that.

(no subject)

Date: 2015-12-02 05:41 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
and a PS that I'm US based and at 10.5 years of complaining vigorously.

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