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Newly diagnosed

Posted , 8 users are following.

Guest
Guest

After years of itching and using Canestan virtually monthly, I have now been diagnosed with Lichen Sclerosis. The itching got worse after my menopause to the point of unbearable and I have additional itching in my bottom. Clobetasol prescribed and the itch miraculously stopped virtually instantly. I am also using Derma 2000 wash which seems to cause no adverse problems. I am obviously worried about the implications of this disease and the unknown, I am also concerned about the long term usage of what my doctor described as the Chernobyl in Steroid cream and whether this will ultimately lead to further damage. At the moment though I don't care first night in a year I have slept with no itching, the soreness has gone and I am pretty ecstatic to be in this great place quite so soon after using this ointment.

2 likes, 12 replies

12 Replies

  • Holiday_girl
    Holiday_girl Guest

    Posted

    Hi Teresa know how you feel I spent a fortune on Lanacane over many years to get some relief but after being diagnosed with LS and given Dermovate and Hyromol to apply in between was such relief  to sleep all night. I have got bit lazy applying steroid till itching starts again then I remember. It's strange only get itching in the night fine all day also get itchy bottom as well. Hope you feel better soon it just takes time and remembering.

    • Guest
      Guest Holiday_girl

      Posted

      Thank you for your reply, I must say I am feeling a little out on a limb, family members seem to be a little embarrassed discussing my vulva and a little unsympathetic, I am sure this is because they probably have no idea what constant itching can do to your brain. x

       

    • Holiday_girl
      Holiday_girl Guest

      Posted

      Know what you mean my daughters and granddaughters know of my condition think all women should be informed I'm sure my mum had it bought lots of Sudacreme for soreness and irritation.  I described it to my partner as like having 6 knot bites down there how would you like it he didn't answer .

    • Guest
      Guest Holiday_girl

      Posted

      I also have told my daughters and granddaughters. I think they should be aware and then if any symptoms should occur they will have some knowledge and not have to wait as I did for diagnosis. I am one of the lucky ones who did not have itching or burning, only redness but because of that I was being treated for fungal infection. Only when lacy white areas began to appear did they do biopsy and that was many months after first symptoms appeared. Then they did not seem to understand seriousness of this disease! They said was 'only' a skin condition and to use the clobetasol for two weeks and it would go away! I researched it myself and quickly changed to new gyn who specializes in diseases of the vulvar and I am very glad I did. With clobetasol and seeing her once to twice a year everything has been under control. Well almost everything, I do have some 'melting'of inner labia on right. I have appointment with my doc on Tuesday and see what she has to say about it. But Hoilday girl I totally agree with you that all women should be informed and aware. I am sure there are women out there suffering with this disease and not even aware of what it is, as I don't think a lot of docs are knowledable about it either as demonstrated with the first Doc I saw.

  • Guest
    Guest Guest

    Posted

    I have been using clobetasol for almost three years. I used it twice daily for two weeks then twice a week for about nine months then LS specialist decreased it to once a week which I am doing now. The important thing is to use it exactly as the doc directed and to use it sparingly. My specialist has me use about the size of a pea. If your doc did not specify how much to use then you should check with him. Yes it is a very potent steriod but it has kept my LS under control and as my specialist said it is the gold standard treatment. Good luck and remember we are here for you.
    • chicks
      chicks Guest

      Posted

      I have just been reading through all the comments and came across yours. I have had LS for over 30 years. Didn't know it was LS thirty years ago but now of course I realize what I have had all this time. I haven't thought of looking at any forums before about a month ago and for thirty years or more I have been using a steroid cream. It has made my skin so thin that I tear very easily and I now have a lesion that I might have to have cut out if it doesn't heal by the end of November. My gynie has told me to use Desitin Cream (baby cream) for it. I f I had to give anyone advice I would say try to find another solution to steroid creams. After reading these comments on this forum I have been using a mixtrue of 4 tablespoons of Organic Castor Oil, 2 DROPS of Lavender Essence Oil and 1 DROP of Lemon Grass Essence oil. The drops must NOT be exceeded. I haven't had an itch or sore feeling for over a month now. I feel like it is a miracle. A lot of people seem to like using borax in their bath water and one lady has had great success with Australian Dream Cream (which is also used for arthritis). Maybe what suits one person doesn't suit another, I don't know but please be very careful about using steroid creams too much.

  • hanny32508
    hanny32508 Guest

    Posted

    Glad you found some relief via Clobetasol.  You seem to have a very honest doctor, calling it the Chernobyl in Steroid.  It means clearly that you have to be very careful with its usage.  I hope you will continue to feel well.
  • sylvia3146
    sylvia3146 Guest

    Posted

    Oh how happy I am to read about the wonders of Clobetasol and how it helps so many of you but how sad also that because of an allergy to steroid creams, I cannot use it which means that I have to battle LS with very little help.

    I am just coming out of a nasty flare up and only cold baths, Epsom salts, ice and sticking to a non dairy, no meat, no alcohol  and where possible no gluten has got me through but it still took about four weeks of awful itchiness around the vulva and rectum.

    I am seriously wondering whether I should try again with steroid cream but I'm also petrified of another massive flare up. Any advice? Has anyone else been in this position?

    Sylvia

    • hanny32508
      hanny32508 sylvia3146

      Posted

      Sylvia,  I get more and more sore from using even the tiniest amount of Clobetasol  as well.   Best thing I could do was baking soda baths and rinses after each bathroom visit at first.  Later I used borax baths and rinses.  Perhaps it is a good idea to go over the discussion "An Experiment with Borax".  (Plus diet and moisturizing with coconut oil and dilation)

    • Guest
      Guest sylvia3146

      Posted

      Feel so sorry for you, Clobetasol has been an instant relief for me. I am so early in this disease that I couldn't possibly advise you on what to use and to be honest I have a medicine cabinet full of useless, expensive, ineffective creams and potions. Luckily I have struck gold with a GP whose speciality is gynaecology, she seemed positively excited to be finding me in her surgery with Lichen Sclerosis.

  • sue162
    sue162 Guest

    Posted

    Aww good luck Teresa, the clob made my soreness go and wounds to heal like you was so sore and bright red.  Xx
  • Anna777
    Anna777 Guest

    Posted

    Hi Teresa, I too had intense itching for years.  After I joined this site, I discovered relief by soaking in a bath with 1/3 cup of baking soda.  After a couple of baths, the itching completely stopped.  So  you don't need steroids to stop the itching.  Also, read the thread, "An Experiment with Borax" for a natural healing solution.  You should read the entire thread to see results that I and others have reported. It's such a blessing. 

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