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Lichen sclerosus diagnosed 6 months ago

Posted , 19 users are following.

lorraine61491
lorraine61491

Still using dermovate steroid cream twice a day, soreness is getting worst, haven't been able to wear underwear for a week!. Feeling so depressed, feel so alone .

Can anyone give me advice?

0 likes, 80 replies

80 Replies

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  • sandra01720
    sandra01720 lorraine61491

    Posted

    Sugar is a HUge Issue for me. I had my long flareup almost settled for two or three weeks and went back to eating more sugary foods and here I am fighting a flareup again. Reduce your breads also.

    I love my baking soda baths. Comforting.

  • Guppy007
    Guppy007 lorraine61491

    Posted

    Lorraine, when I suggested stopping the cream, I should have stated only for a few days to give your skin a chance to rest/recover.  I do hope that you can find another opinion asap so that ideally you can continue using cream, but perhaps a different cream.  Sometimes Dermatologists or Gynocologist can treat LS; it is worth ringing up and finding out.  I just think after six months that if it hasn't improved at this stage with what you are using, then you need to look elsewhere. 
  • lee12629
    lee12629 lorraine61491

    Posted

    Dont they usually only have you use it twice a day for a month or so then cut the dosage down??
  • lee12629
    lee12629 lorraine61491

    Posted

    you mention you are sore,wondering if you are menopause age where vulva atrophy can occur and can thin the vulva tissue,if you use a strong steroid like clobetasol it can also thin the skin. While I realise it is necessary to treat LS it also sounds like 2 times a day for 6 months if you do also have atrophy would not be good. Go to another gyno and get checked for other female issues besides LS you could have more then one thing going on at a time. Thats what I would do.
  • Jess1612
    Jess1612 lorraine61491

    Posted

    Hi Lorraine - I would stop using the steroid cream for a break.  I had the same problems and the cream seemed to make everything worse!  It is so individual that each of us can only make suggestions to for you to try and share our personal experience. I was told that if its not settling with the Steroid or you are getting more issues - then it's possibly not the right treatment for you.  I stopped everything apart from many of the maintenance suggestions that some of the ladies have made to you.  It's funny because I can't use coconut oil however many get great comfort from it? This just highlights how we are all different.  Give yourself a good 2-3 weeks break from the steroid and see what happens.  I also suggest keeping a diary of how you feel and what is helping or not helping.  I would score my day out of 10 for comfort and make notes and this was really helpful for me getting to understand this complex condition.  Keep positive it will improve!  
    • lee12629
      lee12629 Jess1612

      Posted

      Good idea,journal for any condition is smart. I should be doing that also.
    • Jess1612
      Jess1612 lee12629

      Posted

      Hi Lee yes I got the idea from another lady on this great site.  I was a bit lazy about it at first but when I got into it I was surprised at what I was seeing and how it helped me stay focused.  I noticed certain medication I was taking was causing me issues and also the diet connection.  I have been very fortunate that until I got LS I had not had any health issue so it took me a while to accept I had a problem and I was very "why me" - now after all the great information and support from this site I realise I am not alone or a freak and to get on with doing what I can to be comfortable and grateful I wake up everyday. This is not life threatening but it is not pleasant I admit and we all struggle in different ways, some more so than others.  Happy New Year! 
    • lee12629
      lee12629 Jess1612

      Posted

      Happy new year back. Hopeing we all feel good in 2016
  • petalangel
    petalangel lorraine61491

    Posted

    Hi Lorraine, i to have been recently diagnosed. I was prescribed Betnovate which worked very well but on my check up another doctor changed it to Dermovate which made my LS flare up making me very sore. I have gone back to the Betnovate which is currently working well. I also got a flare up over Christmas which i can only put down to eating too much sugar, which i was previously avoiding.

    You are definitely not alone.

  • sandra01720
    sandra01720 lorraine61491

    Posted

    I use emuaid as my "alternative" steroid. It's a natural product that bring GREAT relief to my itching. Maybe if u gradually reduced your steroid (gradual so you don't get a rebound effect) and used emuaid as a replacement until there's been some healing to your skin, you could reduce to a maintenance level of steroid. (Once or twice a week). When I'm flaring, I reach for my emuaid OFTEN!

    I do have an area of my vulva that seems to respond best to Vaseline when sore. Have you tried Vaseline over the sore areas to keep all body fluids off the skin and give it a chance to heal? Vaseline isn't perfect in that it doesn't have healing properties but it's been helpful to me when I have those sore areas. Our damaged skin really doesn't appreciate urine hitting it!

    • lorraine61491
      lorraine61491 sandra01720

      Posted

      Hi Sandra , yes I tried Vaseline sometimes it's OK. I actually went back to doctor this morning he changed my cream to elocom cream. Has referred me to specialist at Brighton hospital. I don't think I can get emuaid in England , I'm lucky I suppose in that I don't get itching just very sore. I'm so glad I joined this group you feel so isolated , I'd never heard of this condition before.
    • sandra01720
      sandra01720 lorraine61491

      Posted

      Glad you are getting looked after. It's a lonely disease and I am so blessed with the support on here. Hope you are soon finding relief.
    • Morrell1951
      Morrell1951 lorraine61491

      Posted

      Elocom is one notch down in potency from Dermovate. That seems like a good thing to try. Did the doctor also say to cut back the frequency?
    • Jackiem26
      Jackiem26 sandra01720

      Posted

      Sandra where do you get theemuaid from? I have seen it advertised, but for America .
    • sandra01720
      sandra01720 Jackiem26

      Posted

      I have gotten it off amazon but apparently there's some concern about an inferior product being sold under the name emuaid. If you purchase it anywhere except the Emuaid company, they won't do a refund if you are unhappy with the product. Your best option is to get it from the Emuaid company. They did ship to Canada for me. Where are you from?
    • lynne1945
      lynne1945 Jackiem26

      Posted

      Jackie, you can get it from Australia too. That's where I got mine from. It's through the offical EmuAid USA site, but just email them for the Aus details. Of course, you may be in UK so not relevant for you perhaps. 
    • lynne1945
      lynne1945

      Posted

      And incidentally, although it didn't personally work for my lady bits, too warm for me, it's marvellous for many things. Burns, haemorrhoids, sores etc. we use it all the time. 
    • lorraine61491
      lorraine61491 sandra01720

      Posted

      Can you buy emuaid in the UK? What is Palin's cream does anyone know and does it work?
    • lynne1945
      lynne1945 lorraine61491

      Posted

      Lorraine, my ointment didn't help, tried both betnovate and Elecom. Burns and lesions occurred. Started Elecom cream three days ago and improvement immediate. Some people can tolerate one thing and not another, we're not all the same. But the soothing measures are worth looking at. Atavan Fatty Cream is most soothing for me but all the baths and washing after peeing and many many other ideas came from here, and not my specialists. The doctors care, but they have standard treatment and little time. They also don't have LS or LP, you can only get support from other sufferers as far as empathy and tips and true understanding.

      Good health for the new year.  (This is my third attempt at replying to you but they are getting lost) 

    • lorraine61491
      lorraine61491 lynne1945

      Posted

      Hi Lynne, I haven't heard of Atavan fatty cream is that available in the UK? I can't believe that doctors even my dermatologist do not give you the information. I'm glad I have been referred to specialist at the hospital, I bet I've got a long wait though . I wish you good health also for the new year.
    • lynne1945
      lynne1945 lorraine61491

      Posted

      Sorry Lorraine, it's called HealthE Fatty Cream here, had a brain hiccup with the Atavan 😀  Anyway you can buy it at the pharmacy, it's cheap for a huge amount and is just an emollient for dry skin usually used for psoriasis etc but you can look at a list of ingredients online I'm sure.  Hope your wait isn't too long! 

      Also Elocon not Elecom, it's the brand names lol, they are all getting mixed up in my head lately.

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