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Male Lichen Sclerosis - just diagnosed, have questions..please help!!

Posted , 6 users are following.

patrick02805
patrick02805

Recently diagnosed and very scared. I just have a small white ring around the meatus, but the meatus seems to stick together sometimes, especially after sleeping all night. Have been using clobesatol for 6 days, seems to be helping though I know it can be a long road. What I want to know but can't seem to find:

  1. I'm worried about this creeping into the urethra, but can't find how common that is. If I thought I'd just have to use this steroid every day for 3 months and then 1-2 times/week to prevent from coming back that would be fine with me, but if it gets in your urethra it seems like that's much more difficult to treat.

Anyone know how often this happens?

Also, how can you tell?

Also, are there treatments for this besides urethroplasty?

  1. How long does the clobesatol take to start working?

  2. And is there any way to use the steroid inside the penis so that it doesn't spread down the urethra?

1 like, 12 replies

12 Replies

  • danildex
    danildex patrick02805

    Posted

    hello could you put a photo to understand and also to help others understand the diagnosis? as far as your questions are concerned, persisting with clobesol for at least three months will certainly improve

  • Tizio
    Tizio patrick02805

    Posted

    Hi!

    Could u put a photo of your situation?

    First of all, how it started? White ring appeared directly or you had other symptoms before?

  • Tizio
    Tizio patrick02805

    Posted

    I had a diagnosis of lichen sclerosus too by one dermatologist than after changed his mind, I've been to other 12 doctors (GP, urologists, dermatologists, lichen sclerosus experts, andrologist) that ruled out this disease, but I'm still scared.

    My main issue is the mild dryness of the penis head (glans) and inner foreskin.

    Eveything get worse after the use of steroid cream (Desamix Effe - Dexamethasone + Clotrimazole) that literally burned my skin. And I have some strange sensations after ejaculation. Do you have something similar?

  • Ivank11
    Ivank11 patrick02805

    Posted

    Hi Patrick sorry to hear that you have been diagnosed with LS. Hopefully you have got it early enough and it won't spread. The clobetasol cream should really help you you didn't say if you are circumcised or not being circumcised can also really help!

    If it's not diagnosed and treated it will most likely spread to the meatus and urethra. many guys who have acquired phimosis don't realise they have LS because they can't retract the foreskin and see the glands with the scarring.

    You should see an improvement after a few weeks.

    If it's just the meatus that affect a meatoplasty might be helpful. if the urethra is affected you urine flow would be restricted.

    So is the foreskin or frenulum affected by the LS?

    • patrick02805
      patrick02805 Ivank11

      Posted

      Thank you!! I am circumcised, which means it is rare for me to have it. I think I caught it relatively early.

      *I only have problems urinating in the morning, as the meatus sticks together.

      I'm reading new (in the last 2 yrs) studies that talk about using the clobesatol inside the urethra...if it has spread to my meatus, then I hope that putting some of the ointment in there will stop the spread. (I've been pushing the clob into the hole as much as possible).

      I only have a white ring around the meatus, and it doesn't even itch or burn.

    • Ivank11
      Ivank11 patrick02805

      Posted

      Yes That is quite unusual but it does happen you need to give the cream a chance to work then it's quite difficult to put in the urethra or meatus. probably a strange or cotton bud is your best bet the problem is it will always be washed out everytime you use the toilet. it's not something I would do in the long term as the steroid cream can thin the skin and it's very delicate in that area. you should read up on a meatoplasty if the clobetasol doesn't help!

    • patrick02805
      patrick02805 Ivank11

      Posted

      So I've been reading on meatoplasty like you said. It's hard to find much about it that isn't based on infants who need it. I have some questions:

      Does the procedure affect function of the penis if dont as an adult? (numbness, ED, urination, or cause pain during sex)?

      Does it leave a scar?

      How easy of a procedure is it...is it hit or miss or routine?

      Thank you, you are so helpful!!

    • Ivank11
      Ivank11 patrick02805

      Edited

      It's something you should talk about with your urologist for more information. Your probably not at that stage? you don't have any problems with peeing? it's much the same procedure for a adult as a child it opens the meatus so you don't have stenosis and you can pee easily again. The problem with meatoplasty it doesn't remove the LS skin like a urethroplasty does. but hopefully you won't need either and the cream will work.

      https://auau.auanet.org/content/v2-03-malone-meatoplasty-dorsal-approach-meatal-stenosis-patients-lichen-sclerosus

    • patrick02805
      patrick02805 Ivank11

      Edited

      My urine stream is fine EXCEPT for when the meatus is inflamed (smaller), which has happened rarely from time to time. However, it sticks together almost every morning when I wake up and I have to open it up with my fingers to pee. After that it's fine the rest of the day. But I'm guessing that it is progressing. I'm using clobetasol for a week and a half, but I don't see much difference yet. I'm trying to get as much of the ointment into the meatus, but it's hard to do (I'll see my urologist soon and hope to ask him if I can use a small syringe).

      I'm trying to get this condition under control before it advances to a worse stage where I have to have urethroplasty surgery. I'd be ok with a meatoplasty surgery to remove scar tissue from the meatus (unless I can just use clobetasol in the meatus), but after that - if it continues to spread to the urethra - I'd like to try this new way of going about it:

      https://physicians.dukehealth.org/articles/intraurethral-steroid-lichen-sclerosus-induced-stricture-disease

      I'm new to all of this and really freaked out, scared to death, so if anyone has any knowledge for a newbie I'd really appreciate it. I just don't want to end up having to get a lot of urethra surgeries. (I'm 43 yrs old)

      THANK YOU!!!!!

    • Ivank11
      Ivank11 patrick02805

      Posted

      That's an interesting article I think I read something about this before. It's still early days for you. I'd continue with the clobetasol see how it goes it doesn't sound to bad anyway from what you've said. Try not to worry too much about it this doesn't help the condition I know that's easy to say.

    • ben55917
      ben55917 patrick02805

      Posted

      hi Patrick

      how are you now?how is the meatus?

      are you still using clobastol?

  • patrick02805
    patrick02805

    Posted

    Why is everyone asking for a picture? I have the disease, it was confirmed by biopsy so I don't need you to look at it. (I'm not keen on posting a pic...there are plenty online). I'm asking 3 simple (yet pretty advanced) questions, for people who've been dealing with this for longer than I have...

    Does anyone know how often/common it spreads to the urethra?

    Does anyone know how long the clobesatol takes to start working?

    Does anyone know about using steroids in the urethra (this is a new technique they've started using instead of surgery)?

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