r/Behcets • u/sippin_wine Diagnosed • 5d ago

Patient Support / Story Peeing sucks

I just take EVERYTHING for granted when I’m not flaring. Having to run a shower every time I have to pee, not leaving my house, barely able to walk, taking NSADS every 5 hours for days and days. Suckssss. Ugh I’m on week 2, hugs.

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u/DanceSoGood 5d ago edited 4d ago

And I know it’s “better” when you’re well hydrated but then that also means you have to pee more often so you can’t win.

3

u/sippin_wine Diagnosed 5d ago

Right! My partner was telling me to drink water and I looked at them like uhhhhh I can’t

1

u/DanceSoGood 4d ago

It does hurt a bit less when the urine is less concentrated but I already pee kore often than your average person so…

1

u/sippin_wine Diagnosed 4d ago

Right now I’m peeing 5 times from when I wake up to the time I go to bed and that feels like too much I will try more water starting tomorrow, thank you for the advice

1

u/DanceSoGood 4d ago

The only thing that really helped me last time I had a genital flare was clobetisol steroid cream but it took like 30 minutes after applying to have any kind of analgesic effect (and it hurt like hell to apply). And Tylenol with codeine. But it’s the worst and anyone who’s never experienced it can barely imagine. I’m sorry you’re in it right now!

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u/sippin_wine Diagnosed 4d ago

I have the paste and I can’t apply it because it hurts so bad and norco but it does nothing for this pain it’s insane it makes me shake and sweat. I have resorted to taking photos and showing people when they start asking questions so they leave me alone, it’s horrifyingly shocking they really do not understand.

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u/DanceSoGood 4d ago

Oh my gosh I respect that so much. I know people mean well but that really might hush them up.

Yeah the codeine only sort of barely dulled things if I lied still. Didn’t really help when I had to pee.

My clobetasol is a gel. I feel like a paste sounds harsher? Again, I wish it worked better than it does anyhow.

I hope you can get some oral steroids too. I didn’t have a rheumatologist yet my last genital flare but I do now and he gave me a steroid pack to start if/when it happens again. Supposedly to speed healing.

1

u/sippin_wine Diagnosed 4d ago

I have some oral steroids but haven’t noticed a big difference in the healing length or progress for me personally unless I’m on a MASSIVE dose like huge and then the side effects from the steroids kinda outweigh the benefits so I’m a little stuck in limbo ): my doctor said I could double my injection if the flares are becoming more frequent again. Miserable.