Finally getting somewhere

Hi guys and girls just a quick up date on my progress . I went back to the dermatologist and requested that he sent a referral to betchets centre in Liverpool which he said he will do so thumbs up to that hopefully I'll get some pain relief and the ulcers will either go or calm down because I wanted to ask everyone how they deal with the pain from genital ulcers I've had my flare up now for about 14 months and I'm at my bitter end a bath used to be very soothing but I can't get in s bath the stinging pain is unreal clothes can't touch them I'm popping pain killers like smarties and there doing nothing can anyone please offer any advice help or anything thanks

6 Replies

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  • You could try a CLENIL inhaler, several puffs on the area 3/5 times daily reducing as ulcers get better. Only wear cotton underwear, dab don't rub when wiping or washing. Be careful which soaps or gels you use, some of us like tea tree oil. There is no quick fit or one med for all. This disease affects us all differently and we all react different to the meds. I'm afraid it's a bit of trial and error until you find the best for you.

    Good luck at the centre of excellence.

    Billi

  • Thanks Billi I'll try tea tree and ask for a clenil inhaler

  • Hi, sorry to hear that you are suffering. When my genital ulcers were really bad my consultant put me on a short 4 day course of steroids and then I had cream which I used twice a day. Trimovate Cream and I also have some Betamethasone Valerate 0.1% w/w cream. This worked really well. Once they calmed down I only use the cream now if I start feeling a soreness and I put on straight away and this stops any further problems. I also take Merc Sol 30c which is a homeopathy remedy which I take 2 tablets every 4 hours until the pain stops then reduce to 1 tablet. Always put into the cap of bottle never touch the pills. I also found that taking some pain killers made things worse. I do hope this helps. Biddy

    P.S. Forgot to say, another thing my Gynecologist gave me was a local anaesthetic called Instillagel 11ml could put on as often as you liked and it numbed them. came in a syringe liquid form.

  • Hi Lilypad,

    I'm just reading your post and squirming at the same time.

    According to my dermatologists I have 'horrific' scarring from ulcers in the past. I haven't suffered from them for a few years so there is hope out there.

    If you have been suffering for so long there is a definite problem there for someone in the medical profession to let you continue in such as state.

    All the advice above is excellent although I would dilute the tea tree oil just in case you react to it. I reacted very badly to a sulphur based cream a dermatologist prescribed and ended up with something called Stevens Johnson Syndrome on top of the ulcers I already had (welts down to my knees).

    I think you need to stand your ground and ask for another opinion. Definitely see if someone will give you something to anaesthetise the area. Mind you I am allergic to some anaesthetics so it is a never ending cycle!

    Chin up and be determined to find some relief.

    Cheers Lesley

    PS I found changing from soap to a product based on oatmeal as a body wash helped.

  • Thanks for your advise Lesley I'll stand my ground but I'm getting to the end in my tether with these ulser I've tried tea tree but didn't dilute it and yes it burned now just put it in the bath I'll look into the oatmeal body wash and hopefully I'll find something to stop or at least ease them I've been referred now to the Behçet's centre in Liverpool so just waiting for an appointment then I can get a proper opinion from an expert I'll keep you posted on that and if you've been ulser free for sometime then there's hope for us all

  • Yes, my specialist said that BD tends to burn itself out in one area ( and then move on to another). Not sure if that is true, but it appears to be what is happening with my ulcers - I've even had deep one on my face. It concerns me that you have to wait for so long for some relief. Taking into account the other posts- I changed my cotton underpants about four times a day - even panty liners made me worse. The cotton and lack of moisture did seem to help. I have used the asthma inhalers to prevent new ulcers and that also seems to help. I think there are some fact sheets attached to this site with some more remedies.

    It's all trial and error but you really shouldn't be left in so much pain (mind you I was).

    Hope this bit helps, PM me if you like.

    Cheers Lesley

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