Periods shouldn't hurt.

[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.

Comments

[redsixwing]

Thanks for this. I had two surgeries - one that worked for a year or so and then the second was the nuclear option. (It was so, so very worth it.)

That ten years sounds entirely right from my US perspective - with the twin problems of Not Easy To Diagnose and doctors just plain ol' not believing me.

[kaberett]

Yeah, numbers for the US on diagnostic delay are actually significantly worse than for the UK -- last time I checked properly, it was 8 years in the UK (I got it down to 6!) but the US was 10 years, rising to 12 if you first presented with symptoms in your teens.

[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.

[kaberett]

Ha, yes, I am pretty furious about it as well, because, right--

Teenagers Don't Get Endometriosis is received wisdom, ergo teenagers presenting with painful periods must have something other than endometriosis wrong with them, if anything's actually wrong at all (other than, as you say, wimpishness).

The average age of menarche is in the vicinity of 13.

The average diagnostic delay is eight years.

I was symptomatic from my first period.

FUNNY HOW THE NUMBERS DO THE THING, HUH.

[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.

[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.

[redsixwing]

Fury buddies! YES! Grr arg HULK SMASH INCOMPETENCE AND SUPERIORITY AND CONDESCENSION.

[untonuggan]

I need a drawing of fury-buddies. I really do. swooping down on condescending "it's in your head" asshats. yes.

[highlyeccentric]

re: defecation and urination - do those questions about pain apply to only-during-my-period pain?

[kaberett]

Yep. Though at that point I would be asking slightly more detailed questions - the hormones that cause general cramping & encourage shedding of uterine lining are targeted at smooth muscle so the bowels are also affected, hence the having-the-period-shits thing, but endometriosis affecting bladder/bowel function is more active during periods so that is when the pain would show up from it first.

[syntaxofthings]

I haven't read this yet but it is SUPER TIMELY and I was wondering if you had access to my journal (which you don't) because I am getting ready to deal with period-related things and the more people with experience the better. So. I am glad this exists and can't wait to read it in a few hours.

[kaberett]

Please do let me know if I can be of help, seriously <3 I learned a bunch of stuff the hard way (made substantially easier by friends who went "NO, REALLY" at me a lot), so I'm always delighted to get the chance to pay it forward.

[syntaxofthings]

Agh. Some of these things make sense, some of these make me just mad at my anatomy, most of these things mean I need to dig out old ER after-care forms and information so I can say to gynecologist tomorrow "look, I have had documented pain that no one knows what happened, it is probably related!" The good news is that the gynecologist I'm going to specializes in surgery for endometriosis and benign stuff! \o/

[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.)

[kaberett]

Bodies are WEIRD. Good luck with the thing. <3

(The reason the legs thing happen is endometriosis affecting peripheral nervous function, i.e. starting to eat into your nerves just like it eats into every-bloody-thing else.)

[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.

[pipisafoat]

and a PS that I'm US based and at 10.5 years of complaining vigorously.

[quartzpebble]

I sure wish oral HBC didn't make me cry uncontrollably and send me depressed. I'll be giving Mirena a shot, though.

[hilarita]

Amen!
I'm still not entirely convinced my GP surgery has quite appreciated that my primary reason for HBC is to alleviate painful periods (almost certainly endo), and that the contraception is just an incredibly convenient side-effect.
I don't think people are explicit enough about this: period pain that means you have to leave an event because you can't sit still any more isn't normal. Period pain (and other pain) that means you can't stand up because you need to double over for a moment or seven *isn't normal*. Period pain where you need max dose Nurofen+ and a hot water bottle and you're still not going anywhere, but at least you're not vocalising your pain any more ISN'T NORMAL.

[birke]

Is it normal if that happens once in a while, but isn't a regular part of periods? I get double-over pain and cant-sit-still pain very briefly during maybe half my periods, but I don't think of it as a feature.

After reading this post, though, I suspect my housemate might find it of interest.

[shehasathree]

<333

[vass]

Does it hurt to go to the toilet, either urinating or defecating?
What is the character of your pain? Do you get "tugging" pain? "Burning" pain? Sharp pains?

You have just described my ovulation symptoms (well, the pain-related ones.)

(Most likely this is related to PCOS, which I have been dxed with.)

[tree]

and then sometimes it's not endo or PCOS and no one knows what to do with you. you're just unlucky enough to have a body that starts screaming at you when you're 11 and has yet to shut up.

the only thing that's helped me long-term is a topical progesterone cream.

[recessional]

I just continuously take the pill.

The bleakly hilarious thing about my (horrific, if I'm not on HBC or if I go off it long enough) cramps is that I can literally feel them being cramps. I can feel that they are muscle contractions - even when they're really painful, I can feel the contraction. (I can also feel the actual excretion of sweat, so apparently I am very weird.) My uterus just appears to be REALLY. DAMN. EMPHATIC about getting rid of the tissues. :|

[kaberett]

Ye-ah I get migraine with aura (contraindicating oestrogens) and my depression is massively progestin-sensitive and I just. won't take them. And attempts to put me into chemical menopause stopped working and we have no idea why!

Individual muscle contractions plus actual excretion of sweat: no I'm with you on those, when the pain-in-question is actually cramping I can pretty much feel the cramps.

[recessional]

Uuuugh that sucks.

Doesn't it feel weird? I mean also ow, but also WEIRD.

For my own use (I every so often go off the HBC just long enough to establish that I still have a cycle, because I'm paranoid) I discovered that Excedrin is really good for period pain. Which: muscle relaxant good for muscle-cramp pain, news at eleven! >.>