Heya all 🙂

Backstory: genderqueer (preferred pronouns “they”); stage IV endometriosis diagnosed two years ago (I’ve been symptomatic for about 8 years); list of treatments I’ve tried; currently continuously maxing out on mefenamic acid & paracetamol, as well as a daily anti-spasmodic & 10mg amitriptyline, topping up with codeine, diclofenac gel, TENS machine, hot water bottle, etc.

The Details: for the past two days I’ve been having significant pain spikes (up to 7-8 on this pain scale) when urinating. The pain is only in my lower abdomen right above the hairline, between my right hip bone (close to a laparoscopy scar) and underneath my belly button.

The Question: this is new and exciting – previous difficulty urinating has just been because I’m in enough pain that I can’t relax enough, rather than there being specific pain associated with urinating. I’m seeing my GP on Friday, but I’m not due to see my consultant again til late May. What I’m wondering is: does this sound to any of you like my bladder’s decided to join the party, adhesions-wise? At laparoscopy 2 years ago my bladder was totally clear, but I’ve been on and off menstrual suppressants since then so obviously things could have had a chance to grow. Failing that, any other bright ideas? My other main thought is pelvic floor involvement, but I’d be a bit surprised given I’m only getting pain spikes when urinating.

And a couple of clarifications: I’m asking this mostly out of curiousity, rather than because I think there’s anything I or anyone else can do about it 🙂 And I’m aware of [info]endometriosis, but I don’t feel like it’s a sufficiently safe space for people who aren’t cis women, so I don’t feel comfortable asking my question over there.

Thanks all!

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11 Responses to Endometriosis: exciting new pain!

  1. CykRa says:

    Failing that, any other bright ideas?

    Er, I know this is completely stating the obvious here, but cystitis?

    (Not that that’s necessarily much use since that tends IME to be a nice umbrella diagnosis for “You are a vagina-owner, this is Simply What Happens to vagina-owners, now please go away”)

  2. Ttefornia says:

    Oh hmm, maybe. Deffo doesn’t feel like a UTI (and isn’t acting like one); also, the pain isn’t present pre-urination but seems to persist for up to an hour after going to the loo. Hmm.

  3. CykRa says:

    also, the pain isn’t present pre-urination but seems to persist for up to an hour after going to the loo.

    Oh. I now have no idea of what’s “normal” for that kind of thing. What you describe is my main early warning symptom of impending argh! (Though, to be fair, I don’t actually know whether or not it’s irritant, allergen or endometriosis for me, because I’ve “only” had this for ten years, so it’s not been investigated beyond “does this specific bout need antibiotics or not”.)

  4. CykRa says:

    So, er, yeah. Sorry to be no help :-(. But you have all my sympathies, because cr*p and nasty things are cr*p and nasty, and I hope you feel better soon.

  5. 77aNew says:

    That actually sounds a lot like how my UTIs present – the pain before urination symptom doesn’t seem to come until later (usually the day after I’ve started antibiotics). If it’s still bothering you, I’d see if they’ll do a pee test on Friday. And if it gets much worse, or if you experience extreme back pain or blood in your urine, those can be signs of kidney infections and you should definitely see a doctor.
    Good luck!

  6. Ttefornia says:

    Awesome, good to know! It’s not how UTIs have presented for me in the past, but I get them EXTREMELY rarely and Things Have Changed since last time, so! We will see what the GP says 🙂

    (And I will stop taking B vitamins to give my piss a chance to go less BRIGHT NEON YELLOW…!)

  7. Eanva says:

    I’ve got endo with confirmed bladder involvement, and suspected ureter involvement. I actually have an appointment scheduled with a uro-gyn in a couple weeks because of similar urinary concerns.

    I get some cramping and pain when peeing, but also what I’ve been getting is an urgency to go, and then it will take me several minutes to start going once I actually sit down. And sometimes I’ll feel “not done” when I stop, even though I can’t make any more come out. All of these have been coming and going for several months. Sometimes my urine is also very sharp smelling and cloudy colored.

    So the cramping and pain when going could be just the beginning of it… or it could be something else entirely. If you can get to a uro-gyn for evaluation (possibly a cystoscopy) it might be a good idea, because if your ureters become involved along with your bladder, and they become partially or fully blocked by the adhesions twisting them, kidney damage is a major concern.

  8. Ttefornia says:

    My gynae’s actually an endo specialist, so will hopefully be able to give some info on this when I see him…? Def. worth me bearing in mind asking for an onward referral, though – thank you!

    Thanks lots also for describing your current symptoms – it’s really nice to have that to check against, so. Yeah. Many many thanks.

  9. Mutnia says:

    It sounds like when I had a bladder infection, which turned into interstitial cystitis. I had a constant ache in my abdomen, pain whenever my bladder started to fill up even a little and the pain persisted after urinating. I thought it was my endometriosis again. Antibiotics didn’t help and neither did pain meds. I had to have steroids injected into my bladder to resolve it.

    It could also be adhesion attached to your bladder from the endometriosis and things getting pulled around in there.

    I hope you get some relief soon.

  10. Dekdy says:

    I’m not sure about adhesions or other possibilities. But I did want to say that how you described the pain (particularly not being present pre-urination but being there for an hourish afterward) does sound consistent with the pelvic floor pee issues I experience. That said, it sounds like your pain spikes have come on rather suddenly whereas my pelvic floor issues were much more gradual. So while I wouldn’t rule out pelvic floor, it might make more sense to start thinking about more “sudden onset” causes first.

    PS — When you stop taking B vitamins, how long before your be becomes non-neon? (I’m trying to determine “vitamin neon pee” from “dehydrated pee” right now. It’s interesting.)

  11. Ttefornia says:

    Mmm, I’m not ruling out gradual development of this (I’m about due a period so would expect things to be more painful; there’ve been slight twinges in the past but nothing this defined; etc), but yes, thank you for the +1 to looking for sudden onset causes 🙂

    I think it typically takes me 2-3 days post-B-vitamins? I also tend to think of “dehydrated pee” being more orange and less IN YER FACE YELLOW…

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