1. Community
  2. Women's health
  3. Lichen Sclerosus

Confirmed diagnosis

Posted , 14 users are following.

alison54950
alison54950

Hi I've just been given diagnosis of lichen sclerosus and been told to use dermovate. I feel a change in clitoral area, does the use of steroid improve skin around this area? I still have great discomfort with burning and stinging!! Looking for advice.

0 likes, 41 replies

41 Replies

Next
  • MaryMostyn
    MaryMostyn alison54950

    Posted

    Hi Alison,

    sorry to read about your diagnosis.  Dermovate is actually not good for your skin over time it will make it more fragile. Which is why when it is prescribed normally you use it every day for two weeks then it is restricted to twice a week.  It works for me but only in terms of keeping it under control it doesn't cure LC. Mary

    • MaryMostyn
      MaryMostyn alison54950

      Posted

      Hi Alison,

      no I have never tried coconut oil.  Washing the area with the Epiderm ointment is really soothing and keeping the area moisturised helps. Mary.

    • Scottie_Lottie
      Scottie_Lottie alison54950

      Posted

      Hi Allison

      I was diagnosed with LS 10 weeks ago. It took couple weeks for my burning which was horrendous to ease off and I also found this forum which for me was a life saver as I felt so down emotionally and physically trying to get my head around LS I tried advice from various others on this forum and used Sudocrem as a barrier and it helped so much after every toilet visit as it was barrier from my urine which agrivated the LS. I also sent away to Amazon for Emuaid which also was suggested to keep that area soft and it also helped burning. Within a day of starting using these creams there was a marked difference for the good. I am now on twice a week with clobatasol and I have been having mild burning so I am putting it on every other day for another week to see how it goes. This forum has been invaluable as it gives suggestions on others things you can do to help LS and to try to see what works as everyone I has different issues with LS. I am going to try coconut oil when my Emuaid is finished as it is quiet expensive but worth it if it stops the burning. Hope this helps. I know what you are going through and it is emotionally debilitating. I started to get relief when I used barrier cream and soothing creams along with clobatasol.

    • Scottie_Lottie
      Scottie_Lottie

      Posted

      Hi Allison

      Me again. Do listen to lecture from Dr Goldstien an expert gynocologist in LS I was advised to watch the video and it was so informative. I watched it today. He explains about clobatasol steroid creams and it has certainly eased my mind and vitally important use this ointment. Please listen to it.

    • alison54950
      alison54950 Scottie_Lottie

      Posted

      Thanks so much for advice, I will try anything. I've never felt so down in all my life, I will keep in touch on this.
    • suedm
      suedm alison54950

      Posted

      if you are  young - that is younger than 65ish - then i would wear a glove or finger stall to apply your Clobetasol  - the ointment only needs to break down the tissue in the vulva  not on your fingers - As soon as i have rubbed the  ointment in i wash my hand thoroughly so the steroid doesnt linger on normal / healthy skin

      It is a rotten condition - scary upsetting and VERY uncomfortable, but there are many other conditions that are FAR worse and much more life threatening - so we do have the opportunity to keep an eye out for  possible unwanted changes that need immediate attention- so for that we shoud be grateful- and it is only ourselves and perhaps the loved ones who actually can SEE  the disfigurment!

      Good luck

      Sue

  • janette25
    janette25 alison54950

    Posted

    are you inn the UK Alison?

    i was given Eumuvate for LS and found it kept problems at bay

    i also Double Base Gel for washing vagina that and only that and i was  also told only to use non bio for washing and never to wear coloured underwear or use coloured toilet paper i have followed all these instructions religiously and have never had a problenm

    if you are in UK you can get the double basegel on prescription and the eumuvate cream

    i hope some of this is of help to you

    Janette

    • alison54950
      alison54950 janette25

      Posted

      Yes uk, been using dermol to wash and am going to try coconut oil

      Thanks for info

  • anita1951
    anita1951 alison54950

    Posted

    Hi Alison I to was using Dermovate which made the skin very fragile, once the irritation declined I used a zinc cream every time I urinated, which seems to be repairing the skin.Hope this helps

     

  • hanny32508
    hanny32508 alison54950

    Posted

    In my opinion and from my own experience I do not think that the steroid improves the skin.  The sterioid stops the mysterious progress of LS somehow.  To improve the skin I have used Emu oil and coconut oil.  And I have used baking soda baths and baking soda rinses. 

    Next to that I keep a strict diet:  no sugar, no alcohol, no gluten, limited dairy.  (especially cheese triggers a flare up)  Avoiding stress as much as possible. 

     

  • jackie73005
    jackie73005 alison54950

    Posted

    Hi Alison sorry to confuse you but dermovate has been a god send to me its the only thing that helps if i have a breakout.  i asked the consultant about the skin thinning and he said this is a good thing because LS thickens it and thats when problems start.  I now only use it once or twice a week but would not be without it. I have however purchased Emuaid after reading advise on this forum and i am going to give it a go for inbetween the dermovate.  Hang in there the discomfort will ease.
    • suedm
      suedm alison54950

      Posted

      Another thing Jackie, just to say  that the corelation between changes - especially lowering of hormone levels in our system and often combined with stress, and a predisposition to autoimmune conditions is a factor in LS. Therefore it seems sensible to ensure you keep your hormone levels at a consistant level one way or another, as well as keeping you stress levels under control. Diet is said to play a part in the healing process by many here as well- ie reducing the sugar content in the diet reducing the wheat carbohydrates, others advocate  simple topical solutions that work for them - and others too- As every one and every LS is different it is a matter of trial and error. If it isnt harmful or too extreme you should find something  that will help oou manage your condition - with luck and regular observation. Sadly there are more and more women - and possibly men who are being diagnosed with LS. Dr G is undergoing research in Washington - USA - so perhaps he will find and disseminate possible ways of treating even may be curing this wretched condition

      Best wishes Sue

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.