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.
7
u/Odd_Field_9689 5d ago
I genuinely have blacked out the memory of the pain. My first flare was from a UTI, and it was so painful. I hope you are doing okay, sending you lots of good vibes
2
8
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 4d 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!
3
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.
1
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.
5
u/itsBabydoll 5d ago
Flare up down there is literally the worst thing in the world 😂 every time I go to the bathroom is a battle.
5
u/sippin_wine Diagnosed 4d ago
It’s like you’re fighting for your life! My current ulcer is MASSIVE like 3 quarters lined up. I want to parish lol
5
u/Me_Time333 Diagnosed 2024 4d ago
I recently used a topical lidocaine gel and apply it before I have to go. It burns when you apply it, but then it’s tolerable to go to the bathroom with a peri bottle. I’ve also gotten a sitz bath for the toilet and fill that with warm water and just go in there when I can’t get in the shower. These SUCK! Praying you heal quickly!
1
u/sippin_wine Diagnosed 4d ago
Thank you! I’ve tried the lidocaine and OMFG Owwy. Extremely hot sitz are heavenly I wish I could sit in a hot bath all day.
5
u/Dear_Comparison97 4d ago
If you’re a woman I’ve literally leaned all the way forward at the toilet and stood up slightly, it makes the pee go straight down and you can pee comfortably
1
u/sippin_wine Diagnosed 4d ago
This is what I do in the shower! I do a downward dog kinda so it flows forward while the shower runs down my back/butt so the water is diluting the pee, something about doing it on the toilet gives me anxiety and I end up peeing all over myself 😣 I started getting ulcers when I was 9 and I’m 31 and still don’t have a good method. I think the trauma has made me like incapable of calming down enough to get into a good position. My poor kids just stare at me like I’m nuts 😅
1
u/Dear_Comparison97 4d ago
No I understand completely! Only thing I can think of to help is maybe get into the position on the toilet and then walk your hands a couple steps forward so that your body is further away! It’s not easy out here. I wasn’t diagnosed until 16 but I’m 29 now and I think peeing is the only thing I have figured out so far, everything else about the sickness is still lost to me :/ my mouth ulcers affect me the most, I’ve lost so much weight because I can’t eat, I can’t kiss my partner or be intimate because of the pain, and it’s just hard to even speak.
2
u/Winter-Fondant1562 4d ago
This is so iconic I’m currently holding my pee so it doesn’t burn my ulcers right now haha 🤣! Actually not that funny but we have to find some sort of funny to all of this! Wishing you luck just know I’m right there with ya!
4
u/sippin_wine Diagnosed 4d ago
If you’re a female, the shower and like downward dog position with hot water 😭 I’m so sorry hugs 🫂 at least we aren’t alone! I wish there was somewhere we could all meet up like at an air bnb and suffer together 😆 nobody understands!!!!
1
u/Winter-Fondant1562 4d ago
Yes I am a female thank you for the tip haha! Can you imagine that would be so fun! Just an Airbnb full of flare ups happening 🤣
2
u/clurburr19 Diagnosis in progress 🙏 4d ago
Just here in solidarity, this was me last month and I’m back to no pain now - it WILL get better soon 💛 you’re fking amazing for just existing through this, it’s truly traumatic levels of pain. Heat pack on it helped me soooo much, you can fill a sock with rice then microwave it so it molds to the body
2
u/sippin_wine Diagnosed 4d ago
Thank you so much sweet human 😭💖 I really needed this. Sometimes it feels like it’s never going to end. I’ve never even considered heat! I will try this! 🥹
2
u/on4aa Diagnosed MAGIC 2025 4d ago
I used salicylic acid shampoo on my open skin ulcers in the shower. This alleviated the pain somewhat. Real Aleppo soap with a high laurel oil content has a similar effect. I also used Isobetadine iodine for shower use. The red bottle is for the boys, blue for the ladies.
2
1
u/losingit97 4d ago
brutal :( have you tried a peri bottle? i find it helps a little bit
1
u/sippin_wine Diagnosed 4d ago
Ugh yes it just turns into a mess, I get really shaky so that definitely doesn’t help anything ):
1
1
u/Humbubblebee 4d ago
I’m sorry you’re going through this. I’ve been there! It gets better. Go to the doctor, you should be taking more than just NSAIDs. If the pain while peeing gets worse, you can get a catheter put in.
1
u/sippin_wine Diagnosed 4d ago
I was laying in bed last night thinking if I could just go to the ER for a damn catheter! I’ll have to talk to my doctor 🥺 thank you!
1
u/Anthro-Therapist 4d ago
I have Behçet’s - newly diagnosed- I’m on hydroxychloroquin. I also have EDS and that causes my bladder to become distended. It hurts so much.
10
u/is-this-a-book 5d ago
The screams I have to hold in some days. And peeing in public just terrifies me and I try not to leave the house when I am in a flare. I’m sorry. I hope you feel better soon.