Behcet’s Syndrome Community

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Peeing with painful genital ulcers

When I have flare ups with genital ulcers, peeing is excruciatingly painful for me. I thought I wold share some of the ways I help deal with this pain in case it's helpful to anyone going through the same thing.

So when I have a flare up, one of the biggest thing I get is extremely painful ulcers that make peeing feel like someone is digging the point of a knife into me. In case anyone else experienced this, I thought I would share what I do to help with the pain. This might be sort of weird for some people, but I was desperate for help when I was going through this and couldn't find any.
First off, don't make the horrible mistake that I did and try to make yourself pee as little as possible. I know this sounds stupid, but I was in so much pain, I was seriously terrified of peeing. My own body was terrified of peeing - I swear it would just shoot right back up into me. You want to be extremely well hydrated because it sort of dilutes your pee and, it's no miracle, but I swear it helps with the pain.
So, this might sound kind of silly, but if the ulcer(s) are mainly in one region, I try to direct my pee away from that area. Like if they are mainly in the lower region (closer to your butt), I'll actually put my hands on the ground and raise my butt to try make the pee go forward instead of back so it doesn't touch the ulcers. Again, probably sounds weird, but if your ulcers aren't all over the place, then it works. Unfortunately last time I had one practically on top of urethra so this wasn't possible.
When strategic peeing doesn't work, the best thing I found is to fill a bathtub up with as warm of water as you can stand or is comfortable for you. You don't need to fill it up all the way, just enough to cover your genitals. And then, yes, you are essentially sitting in a bathtub in your own pee. I know it sounds gross, but is it really any different than using any public pool? At least it's your own pee and not 50 other people's. Also, when you're in as much pain as I was and as desperate as I was, gross wasn't really a concern. It's also a little bit of a pain to wait for the bathtub to fill up enough every time you have to pee, but, again, desperate times call for desperate measures. Unfortunately this isn't a miracle solution. In my case (which is always very severe), it is still painful, but it helps with the pain. I find the peeing in the bathtub the least painful, and I feel pretty confident saying that considering I tried everything. Everything
I hope this is helpful to someone.

martacampabadal
moderator

Thanks for sharing your experience here. I really liked this sentence "desperate times call for desperate measures"...

I'm sure the other members will find your experience very useful!

I think this is a fantastic idea you have come up (and down) with. I also think it is great that you shared it with all of us! Thanks.

Also, slathering up with Lidocaine gel (just ask your Dr. for some) helped me tremendously.
A lot of steroid creams help calm it down too.

I actually did have a Lidocaine gel prescription, and I desperately wanted it to work but it seemed like all it was doing was burning a little. When I was looking it up, it seemed like for a lot of people it was either a miracle or, like me, it didn't really do anything. I'm glad it helped you though!

I fill a jug with slightly warm water (make sure it's warm though cause if it's cold it is horrible and freezing) and pour at the same time as peeing. I've been doing that since I was about 7 or 8 and it works quite well when you're in a lot of pain cause of it. Or use any prescribed cream you've been given, that usually makes it better.

Alex, I am so glad you thought to share this idea. I never thought I would have to do it but the last two weeks I did..and it was such a huge help. Thank you. I also found out that there is a viscous lidocaine just for internal vaginal use ...so now I'm prepared with gels, jellies, and creams for any part that might need some pain relief again in the future!

Hi I am new to the community and recently diagnosed after suffering for over 30 years with no diagnosis and like many learnt over the years how to self treat when everything else fails...
I just wished to add my own solutions to this thread. I have used a large bucket filled with water, saves running an entire bath, simply fill another bucket after to rinse, or like me have 2 buckets.
I also use at home and whilst out and about an empty water bottle with a sports cap that is relatively easy to squeeze, I simply fill with warm water and use every time I go to the toilet whilst peeing, when at home I not only use when I pee but wash / rinse all the area too frequently at the same time and I feel sure this has contributed to me getting less severe ulcers in the delicate areas and on the front pubic areas, whilst out I carry a small bottle in my handbag.
I also use, when the need arises and things are a little worse when peeing, a cream sold here in the UK called Sudocrem this is an over the counter medicated cream aimed primarily at the treatment of nappy rash, it's got a water repellent base made from oils and waxes, I need to reapply when required throughout the day, it really helps with the pain. Hope this might be helpful.

Being male i can only imagine how this hurts; but thought worth mentioning i knew a gal who collected the inside of loo rolls to channel her pee away from where she didnt want it to go.
Maybe an alka seltzer tube with the closed end cut off would be more functional?