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

Awful painful disease

Posted , 5 users are following.

pat96918
pat96918

i was diagnosed with this in 2007 just before my second marriage I was given steroid cream to use twice a week but that was stopped because the consultant said it can make the skin thin, I was also given vagifem vaginal tablets and double base cream which all seemed to help.  The cream has recently been changed to epimax from early 2016.  I have not been prescribed anymore vagifem vaginal tablets since 2012, not sure why.  So all I am currently using is epimax cream.  I recently had a flare up and it is so painful so going to take the advice I have researched on this forum and will soon be taking vitamin d3 and turmeric extract, I will also try aloe Vera oil hopefully this will help sort it out, any other suggestions to help with this condition will be gratefully received xx

0 likes, 18 replies

18 Replies

Next
  • kelly86460
    kelly86460 pat96918

    Posted

    Hi Pat,

    Sorry to hear you are having a painful flare-up.

    I posted on this site 4-5 weeks ago as I was in a terrible state as had been flaring for four months. I was so depressed and in so much pain.

    I received lots of replies from the lovely ladies on this forum. They gave me strength and support and I felt so relieved I was not alone with this awful disease.

    I read and re-read thier replies and decided which recommendations to try.

    I started taking Vitamin D, Omezaropole, MSM tablets and Vitamin C (1000mg).

    The MSM has to be taken with Vitamin C to get the full benefit.

    I bathed everyday in baking soda but found this was too much and caused my inner thighs to go bright red. So cut that down. Baths are better as the ointment -clob is better absorbed. (I have been told that clob makes our paper-thin skin thicker, it has he reverse effect with our condition)

    I'm not sure what epimax is?

    I cut down on sugar as much as I could and I have avoided wine. Its been hard and I have had a few glasses here and there. I now have vodka if I fancy a drink.

    I also make a smoothie every morning with spinach, banana, blueberries and udos oil & spirilini which are all good for our immune systems.

    After a couple of weeks I began to heal and now my LS has one into remission!

    I really can't believe after all this time it has gone.

    I have some fusing and everything has 'shrunk' down there but its healthy and pink. 

    I have tried to lie-down more - after work in the evenings and cut down on too much walking.

    All tips I have got from this site.

    I am really grateful to everyone and hope that my feedback may help you x

    • pat96918
      pat96918 kelly86460

      Posted

      Thank you so much for your reply, a little confused about the walking will this aggravate the condition?
    • pat96918
      pat96918 kelly86460

      Posted

      Hi Kelly. Please forgive my ignorance, of course it can aggravate LS by walking, especially if you have a flare up, mine seems to be aggravated further up (clitoriis) so walking does not seem to cause a problem.  

      I have found a massive relief showering in hydromel ointment and using epimax cream.  Hope this helps

  • mary09950
    mary09950 pat96918

    Posted

    I suggest you consult with another gynecologist about this skin disease. From my research and advise from my gynecologist, the Clobetasol is the best treatment. You can't continue to experiment on your own. Keep doing research on the Internet and I think you can be well informed. The best medical treatment should be followed.

    • pat96918
      pat96918 mary09950

      Posted

      thankyou I will book an appointment and ask about the clobetasol, I just felt fobbed off with epimax think it was a cheap option maybe because I do not go to drs very much 
  • linda22319
    linda22319 pat96918

    Posted

    I take 4000 units of D3 daily post breast cancer and upped it to 10,000 when I had flare ups of LS and it does seem to speed up the healing, have just recently added Magnesium after some research
    • pat96918
      pat96918 linda22319

      Posted

      my vitamin D3 is already on order, will keep you all updated 
    • mary09950
      mary09950 pat96918

      Posted

      I may have not read you correctly Pat. Have you been diagnosed with LS? Do you have the itching problem and other symptoms? Some gynecologist can diagnose LS confidently without doing a biopsy. a biopsy can come back non conclusive but still if you have symptoms both physical and visual evident you can be diagnosed.
    • pat96918
      pat96918 mary09950

      Posted

      Yes I was diagnosed a bout 10yrs ago I don't remember having a biopsy because the area had already turned white and some of my vulvar had fused, I was being treated for thrush, the itching was awful at the time and returns periodically but at the moment it has flared up think it's because I have had a cold over the last couple of weeks but this time it is affecting my clitoris which is very painful and feels like it is scaley and dry also very itchy,

      I am using the epimax cream but this was not helping much, after reading this forum last night,  I was surprised to read that coconut oil could help so I used this and also epimax cream this gave me a better nights sleep.  Thank goodness for this forum

    • pat96918
      pat96918

      Posted

      I was referred to a gynaecologist who told me to only wear cotton pants loose clothing avoid aqueous cream gave me quite a lot of literature regarding LS which was helpful. I will dig it out and see if anything could be helpful for this forum,
    • mary09950
      mary09950 pat96918

      Posted

      Pat

      I really believe that Clobetasol must be used the rest of my life to keep LS from causing damage to vulva. At my age 59, it will not go into remission. When I was in my 20s, I had episodes and it did go into remission. But I have all the symptoms now and I must treat all the time. I use the Clobetasol twice a week at night and Aquaphor all day long. I've tried the 1/3 cup baking soda baths but can't tell that it helps anything yet.

    • mary09950
      mary09950 pat96918

      Posted

      I don't remember if I wrote with you or someone else when I expressed the importance of moisturizing. that is my assertion here, along with the medical treatment with the steroid Clobetasol. The best research on reputable internet sites states that.

    • pat96918
      pat96918 mary09950

      Posted

      Thank you Mary i will be seeing my dr on Wednesday and will inquire about clobetasol
    • Larelli56
      Larelli56 mary09950

      Posted

      Hello Mary,

      What is Aquapor , is it to wsh with, I have been given Epaderm to wash with

       

    • mary09950
      mary09950 Larelli56

      Posted

      I am in Texas and it is available at WM in the baby dept. it is like Vaseline but better. The ointment is better than cream. You can buy through Amazon too.

      It was explained to me that LS makes this delicate skin like a desert and you must moisturize to keep the skin from drying up and cracking etc.

      I use most all the time on the vulva. It may make underwear a little oily but will wash out.

      Hope this helps.

    • Larelli56
      Larelli56 mary09950

      Posted

      Thank you for this Mary , I will have a look online.

      Have a good day

       

    • mary09950
      mary09950 Larelli56

      Posted

      Hey Larelli,

      Let me (or us) know how you're doing.

      It is such a comfort to have other women who can offer help like they do on this site. I'll admit I have only talked to my husband and sister about this medical condition. I don't want pity from friends and I expect that would be their reaction. I stopped feeling sorry for myself and now I only feel like I am in charge or control of my body.

      Everyone is different with this disease and it is a challenge trying to figure it out. I think sugar may be an issue for me so I use honey instead with my coffee. And when I overeat it seems like I have irritation if the vulva. I need more fiber in my diet and I am trying to exercise more to keep bloated belly in check.

      Anyways let us hear how you are progressing.

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.