Help: I'm looking for any advice anyone could... - Behçet's UK

Behçet's UK
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I'm looking for any advice anyone could give. I'm 17 years old and I've just been told I have Behçet's syndrome. I have a lot of ulcers and spots over my back area and front, I'm really scared these will scar. Also I showered and I was in to much pain, I know need to get in the shower again, but i am scared I'm going to be in too much pain to put myself through it. If anyone got any advice on how to cope with this, i would appreciate it.

5 Replies

Hello, I was prescribed Clobetasol Propionate which is a steroid ointment for my genital ulcers that helped a lot. Try sitting in a luke warm bath, it’ll be painful getting in but once you’re in it should be ok, better than standing with running water going over them. If it’s painful going to the toilet then I found sitting in the bath helped. With the scaring, I’ve had scars on the soft tissue inside, but not on the skin outside. If you have been given no steroid ointment I’d go back to your GP, or local GUM clinic and ask for some. Hope things improve for you and you feel better xx

Thank you! Due to my age they are not giving me anything, they are waiting for a consultant to reply to see what they can do with me next. They haven't given me no treatments and I've been having the symptoms for a long while now (headaches, spots etc.) I'm worried because I haven't been treated and still not being treated that this could get worse? Thank you for your advice xx

I was 28 when my ulcers first appeared, I’m almost 35 now. I’ve only had 2 lots of genital ulcers, have suffered with them in my mouth more recently, but it’s the headaches I really suffer with, for this I take Sumatriptan which is a migraine blocker, it’s the only thing that works for me. The ulcers will go on their own, but the steroid ointment helped speed up the healing process. Everyone is different but I have “flare ups”, then go into remission for a period of time and can have no symptoms at all for ages!

I would chase your GP regarding the referral and try to hurry it along. If you’re in the UK like me you’ll know this can be a long process... xx

My face is one big ulcer right now, but I have some good news: I've had ulcerations covering the entirety of both legs, and it didn't scar, even when they came back, and cleared up again. The best thing you can do is moisturize with something unscented. and try and reduce friction on them. When you shower, the water shouldn't be too hot, and again, moisturize your legs. I found that when they dried out a lot, they'd start peeling which was super painful. You could also soak in an oatmeal bath. I found it soothing.

I have photos of old ulcerations, and my current painful face. I've found Aveeno to be a gentle option for cleansing and oatmeal baths. Cerave makes lovely lotion that isn't scented. You don't want something balmy and over the top, because oily skin won't help either, but a regular plain moisturizing lotion does help (at least for me.)

Talk to your doctors ASAP, because we don't always know inside what could be going on. External symptoms are part of a larger set of symptoms, so controlling flares is important. I know you said that they're not treating you because of your age, but I would stay on top of them about doing something, even if it's just a course of steroids for the worst of the symptoms. Stay strong!

I too had spots on my back - large painful ones - but they didn't scar. No anti-inflammatories - tablets, cream etc. regarding headaches - see my posts. If you are female - sorry you don't say - make a diary - see if there is a link with your monthly cycle. Please post how you get on x

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