Lichen Sclerosus or as I call it "devils desease".

Posted , 8 users are following.

I have been diagnosed 3 weeks ago by a gynecologist. Been using Clob ointment 2 times a day for 3 weeks. No relief yet. Has anyone else experienced the horrific awful burning from urination this long? I need all the help and advise you have to offer.

0 likes, 20 replies

20 Replies

  • Posted

    Are you using Anything to moisturize like Aquaphor or coconut oil?  
    • Posted

      Hi Mary, I did not know I was supposed to use a moisturizer. Is this to use before the Clob ointment?
    • Posted

      I use the Clobetasol three times a week at night.  I moisturize all the other times.  You should drop down from twice a day eventually. Ask your doctor.  My doctor said vitamin e oil but I have learned from this site other choices.  I hope you get better girl.  It comes and goes as a problem for me.  Some days I forget about it with no issues and then it bothers me again.  Keep trying and don't stress.  Try to eat healthy and enjoy life. 👧🏻

    • Posted

      Thank you again. I have not been told anything from my doctor. Except use 2 times a day. I see her again in 3 weeks. She did a biopsy and also show dysplasia. I am completely horrified of this. Mostly because of the severe burning that is always there when I go to the bathroom. I realize patience is necessary.
  • Posted

    It will take some time before you will notice any positive result.  Meanwhile I encourage you to read some of the discussions on this forum.  For instance on the topic of borax. "An Experiment with Borax". 

    ?If it wasn't for this site, I would not have done so well.  We learn from each other and fill in where doctors won't inform you enough. 

  • Posted

    Using moisturizers like emu oil, witch hazel (with no alcohol), emuaid, Vaseline during my period of when I'm going out and about and will be sweating, extra virgin cold pressed olive oil have made a very noticeable difference to me.  Greatly reduces my discomfort. 

    Three things affect me: stress, sugar and sweat. Sweat is a very bad word for my LS.   

    • Posted

      I see my words got mixed up there. Sorry. The olive oil is to be with the list of moisturizers that have helped me. 

    • Posted

      Wow! Now I see I did have it in the order I intended. It just was poorly phrased!  I feel like I should go have a nap. My thoughts need clarity! Lol Slipped on the bathroom floor today and as I fell rammed my hand into the toilet bowl hard. I sat on the floor and had a cry and then wiped up the mess.  Some days are just better than others!😰 

    • Posted

      The "mess"being water from someone's bath I'm assuming and toilet bowl water that flew out from my hand landing inside !! 😳🙄

    • Posted

      I hope you are ok. Thank you for this info. I guess I will moisturize before I use the bathroom as a barrier. The burning is awful.
  • Posted

    I started using some emuaidmax  cream, seems to be helping! Praise God!
    • Posted

      Thank you Renee for this info. Believe me, I will try anything. Where did you get the emuaidmax cream? And when do you apply? I don't know how to do anything for this.

  • Posted

    Please make sure you get a small spray bottle, fill with spring water, not chlorinated water, spray after urination. Carry with you in purse!
    • Posted

      Thank you for this info. This is a really great idea. I just do not know how to do anything with this god awful stuff. Any advise is greatly appreciated.
    • Posted

      Hi jean I have the same problem been using betnovate for 2 weeks now and still itching like mad. I can drive you insane, some days I could just cry. It's strange some people get instant relief, we're all different I suppose!!Have you found any relief yet?

    • Posted

      Hello to you. I really have not had that much itching at all. I have big white patches and am red every where else.  I am very sore in raw spots. Also the burning pain when I pee is hardly bearable. Now starting to go up towards my rectum. Biopsy came back saying LS and also dysplasia. What the heck??? Normal one day and all heck breaks loose the next. I am using Clob 2 times a day now for just over 3 weeks. I have had no improvement.....or so it looks and seems. Some advise to me was to get a spray bottle and use it when I go to the bathroom. Well that burns as well, although it does clean you. I see my gyno in 2 weeks or so and will be asking many  questions. Please keep me posted if you find a new way to get relief.
    • Posted

      When I was so sore and afraid of infection of any kind I remembered my mother using baking soda.  So I started putting three pinches of baking soda in my spray bottle and rinsed after every bathroom visit.  It made things calmer in first instance.  Perhaps something to try. 
    • Posted

      Thank you so much for this info. I will start that now. Just about like anyone else, I will do anything that is of good judgement and helpful. I appreciate this so much.

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