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Newly diagnosed

Posted , 8 users are following.

justine89448
justine89448

Hi I'm newly diagnosed and have been given Dermivate I've been using 2 a day for 3 weeks and don't feel any better help please  

1 like, 10 replies

10 Replies

  • hanny32508
    hanny32508 justine89448

    Posted

    Have you been diagnosed with having Lichen Sclerosus?

    Quick response: You've found a good place for finding good info.  Please do read some of the topics about LS  to make yourself hopefully feel a bit more comfortable with this illness.  Also look at Dr. Goldstein's website.  

  • wendy14679
    wendy14679 justine89448

    Posted

    Hi Justine. Are you using plenty of moisturiser?  I have recently started using pure coconut oil, recommended by other women on this forum. It is very gentle and with added bonus of smelling great.  I bought it online, but if you have a local healthcare shop, that would obviously be more convenient.  In a flare-up I use dermovate ointment before going to bed at night and coconut oil during the day.  I use pads to protect clothing.  Good luck and welcome!
  • justine89448
    justine89448

    Posted

    Thanks ladies. I am using a moisturiser at the moment I'm using vasaline or paw paw. I'm currently in Dubai so I feel a out of depth. My mum is sending me hydrolmol ointment which I can't get here. I've just gone back on the pill thinking it may help but now I'm thinking it may be the reverse?

    I'm going to see a dermatologist and I need to get my  thyroid checked again. I will just keep trying I guess x 

  • jackie73005
    jackie73005 justine89448

    Posted

    The ladies have given you good advice i use dermovate if i have a flare up and it does take quite a few days to settle it. My problem is stopping the skin cracking inbetween break outs i might take Wendys advice and try coconut oil.  Good luck and this site is great for support.
  • suedm
    suedm justine89448

    Posted

    Oh Justine what a shame to be so far away from your mother at this time

    If you can take time to read through several of the threads  that have been raised by  members you will find that many find similar responses to the anxieties raised by having LS. In Dubai you have the weather to contend with as well Try and keep the undercarriage cool. Do take time to log on to Dr Goldsteins lecture and try and take screen shots of the slides - they do explain a lot and need to be looked at after the talk which takes about an hour- This is easier on a desk or lap top i think. Firstly do try and reduce the biggest stressors in your life if you can - find coping mechanisms- Stress will increase the cortisols racing around the system and wont help matters in the undercarriage. Reducing sugars in one's  diet has been helpful for many. Do use the sprays in the WCs to keep the urine off your skin,  Use a pea sized amount  after a warm relaxing bath , massaged in really well- You are younger than many of us i guess so do think about using a protection on your fingers while applying the Dermivate ointment as you are in for the  long haul i am afraid. Do get a mirror and check yourself regularly. Enough for now - but you have found a helpful site Take care and try not to scratch or worry

    Sue,

     

    • justine89448
      justine89448 suedm

      Posted

      Thanks yes the heat is a problem as sweat really does irratate me. But this is a great website and I'm glad I can talk openly as I think it's difficult with friends just even getting them to understand what it's like. Luckily I have no fusions or anything yet just very sore inflamed and itchy Crawley feeling. But I do wish I could get it under control I will keep trying. I have a mirror and I do check. When I really can't cope I use an anesetic cream wich makes it stop for a while but this is not something I want to do long term. Thanks for your help
    • suedm
      suedm justine89448

      Posted

      What barrier creams /ointment are available to you?

      If you look at Dr G' site the link is https://patient.info/forums/discuss/dr-goldstein-lecture-271556 he gives  info re applying the ointments. Urine is a major irritant if it gets to the skin , as of course are mentral fluids and faecal material, so keeping those fluids at bay will help a lot. No tight pants  jeans or thongs!. When possible use a cold wet pack (or an ice pack  wrapped in a soft material - you dont want ice burns on top of everything, for a short while) to reduce the itch Drink a LOT of water to keep the urine dilute - strong urine stings Do chat away on this site with any thoughts or worries - while we cant cure this condition we can at least support each other with ways we have coped with our own issues

      Take care and keep cool Sue

       

  • ChicaNZ
    ChicaNZ justine89448

    Posted

    Hi, I've just been diagnosed too (2 weeks ago) though think I've had Lichen - not the skin thickening just burns and lesions - sclerosus for years on and off now.  

    I had my second daughter at 40 and thought (so did doctor) that I was suffering with thrush for a year after her birth.  It all subsided with flare ups from time to time till this year (my daughter is nearly 9) when I got really bad IBS after a trip overseas earlier this year.  I instantly got out the baking soda and sat in a bowl of that with warm water- instant relief - twice a day.  I also have a bottle of Manuka/kanuka oil (easy to get in NZ) which is what makes Manuka Honey potent.  This is tea tree oil - melaleuca alternifolia and a well known cure all.  NZ soldiers were given bottles of this in their first aid kits during the world wars.

    It stings/burns if you put it on neat, but makes a big difference if you can handle the initial pain.  Better still, I put a few drops with zinc and castor oil cream (suda crem would be good) and smear it on the affected areas.  After reading some of the posts, I think I will try this with coconut oil as well.  

    My doctor said not to use anything but barrier cream till the lesions were better before my next appointment; oh boy, did she not know what she was talking about, but at least I had a diagnosis after years of going to other doctors who said there was nothing wrong!  

    Thank you everyone for all your posts.  It is so good not to be alone with this.

    • hanny32508
      hanny32508 ChicaNZ

      Posted

      Thank you Chica, I have put Manuka oil on my list.  It may indeed be good with the coconut oil. Just a few drops.  That is, if it is like tea tree oil - that will sting.  

       

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