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  3. Lichen Sclerosus

Just Diagnosed Lichen Sclerosis

  1. I also have LS, i got diagnosed last month, im 22, got put on steroid cream twice a day for three months, but ive read so many bad things about it, but my doc said to do it so, im gonna listen, mines really white down there, does the colour ever come back? Or does it stay white? sad im glad ive found this forum because i have so many questions i want to ask. Hope you can help smile x

  2. HI Clare, If you read the messages that other sufferers have written there is one that says she has reversed LS by having a low oxalates diet, and these are found in many plant foods. it is worth a try and certainly can't do any harm.After the 3 months you should be able to use dermovate once a day and then twice a week until you need only use it when necessary. Good luck

  3. Which foods should i try then? Im going to look through all the comments now, and see what other people have tried then give them a go smile i hope the colours comes back more than anything, how long have you had it?

  4. I must have had it for about 18mths but reading other peoples reports I think I am quite lucky. I was 1st diagnosed with lichen sclerosis by a locum consultant but when the original consultant returned she decided that is was lichen planus. I think I have LS myself and mostly suffer with soreness but as I am getting on a bit and a widow I am not worried about how it looks.!! As for diet I woul think plant foods must mean salads etc. I am trying to just use dermov\te as necessary and use cetroban as a moisturiser.

  5. I must have had it for about 18mths but reading other peoples reports I think I am quite lucky. I was 1st diagnosed with lichen sclerosis by a locum consultant but when the original consultant returned she decided that is was lichen planus. I think I have LS myself and mostly suffer with soreness but as I am getting on a bit and a widow I am not worried about how it looks.!! As for diet I woul think plant foods must mean salads etc. I am trying to just use dermov\te as necessary and use cetroban as a moisturiser.

  6. I was also diagnosed with LS about 3 months ago After surgery for lesions I had a follow up appointment and was told that I had LS. I was given Dermovate ointment which I had to use twice daily for 2 weeks followed by hydrocortizone ointment twice daily for the next two weeks. This helped me immensely as I struggled with being uncomfortablewhen sittting for long periods and also with sleeping at night due to the soreness. I have gone to bed at night and just sobbed as I could not get comfortable. The doc presrcibed me with Amatrypaline which is a nerve blocker and I still take one each night I was told that I would only need to return to the Hydrocortizone if I had flare ups. I was advised to continue with the Gynest cream which is aeostrogen which I have been using for vaginal dryness. I have now just had another flare-up(these seem to be more often than not) andI have started to use the Hydrocortizone cream yet again. Does anyone know what effect hydrocortizone can have long term. What is the low oxalates diet as I am prepared to try anything.

  7. HI Sheila.

    Hydrocortisone cream is a mild steroid cream. ( look up the strength on the package and read the leaflet they give you) The dermovate is a strong one and people using strong steroids need to be careful to just use minimal amounts, just enough to do the job, as too much is harmful, and can even lead to Cushings disease.

    You are lucky that you are managing with the milder one as many LS sufferers are still using dermovate every couple of days even after many years.

    Best of all you are using oestrogen, which applied topically helps to keep the skin soft and more elastic. I have heard tell that it can also reverse the fusing caused by LS, either partially or fully. I do not use it myself as due to other health problems oestrogen is off the menu for me, alas.

    I tried the low oxalate diet for a while , with no success, though maybe I didn't keep it up for long enough. Just look up oxalates on the internet. I know what you mean about trying anything !!! so give it a go - nothing to lose.

    I always think if you think something is doing you good then it is.

    Take care.

    Joodie.

  8. Thanks Joodie

    I have been reading some of the other forums and there has been mention of Emu oil, Paladin cream and, CMO cream.

    Wondered if its worth purchasing any or all of these? Have you heard of them?

    Do you recommend giving them a go?

  9. Hi Sheil. I can recommend the emu oil. It penetrates more deeply than the others,and they say it closely resembles our own body fluids. It has been used for a long time for relief of muscular pain etc. Seems expensive, about £30.00 mine was, but lasts for ages.

    If I get lax about using it, my skin gets dry and tight and sore and burns on urinating, all that painful stuff.

    Be careful not to apply the steroid immediately after using it. Let it sink well in first.

    Have you tried one of these donut cushions for sitting? I got one meant for people who have had operations and it helps a lot. I cover it with a loose cushion cover so it looks like just another cushion. It's for me though!

    I haven't tried the Paladin or the CMO. I tried aqueous cream ( good ,but bad for thinning the skin) olive oil, and coconut oil. Sticking with the emu oil now.

    Some people think it is too greasy, be warned. Well, you can work around that.

    Deff worth a try.

  10. Hi everyone, I was diagnosed with LS 3 years ago. I have been using Dermavate

    once daily for the last 2 years,only small amounts. Still get flare ups from time to time.

    I am worried about long term use. Sudacrem is a good soother for sore skin.

    Since using Dermavate long term i have noticed my hair thinning, don't if its connected.

    Going to see my GP this week. I am 63 and have suffered hair loss before LS.

    I do not think i can keep using Dermavate daily for the rest of my life.!

    Feel scared to leave it off, as i have my life back. Has anyone else noticed hair loss

    after using Dermavate? Perhaps its just hormonal.

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