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Still the same!!

Posted , 4 users are following.

alison54950
alison54950

I have been trying to treat what was suspected LS with no improvement using dermovate, epaderm and many more to try and ease pain and discomfort , I saw 2 consultants today. Another thorough examination and they seemed puzzled! We are now going down another route, nerve damage possible vulvodynia ?? Which I said 5 months ago!! So further tests ahead to see if this is the reason behind my constant burning and pain. Has anyone else had a similar experience? Any good results with treatment x

0 likes, 7 replies

7 Replies

  • cynthia40883
    cynthia40883 alison54950

    Posted

    Hi Alison, I am not sure if I have this either,as I have had no biopsy. There is itching burning, and dryness. Sometimes tears.The best thing I have done so far which has helped tremendously,is get a small spray bottle,carry it with me in my purse, and spray with spring water, after every urination. This takes away the burning. I use no other products, such as soap or cleansing agents. Some people swear by emu oil lubricate and heal. I have it but cannot get the nerve to try it yet. Sitz baths in a sitz basin fro the drug store, with just plain spring water, bottled, helps. Some people also swear by small amounts of baking soda in water. I know you frustration and pain. If you see a doctor for vulvadynia, please keep me informed. Thanks for sharing, Cynthia
  • mary_58782
    mary_58782 alison54950

    Posted

    I do have LS, but you did not mention my go-to's. lidocaine ointment: it stops itching in it's track for a few minutes. It burns a little which also helps stop it and then it numbs the area.

    2. Desitin... With 40% Zinc oxide. I think it is the zinc oxide that really helps it to work. It usually calms my skin. I believe in the UK is is a nappy cream. Oh, for me, I get the PASTE! For some reason ointments tend to drive me crazy as does the cream!

    3. Clobetasol ointment. An ointment is supposed to be more effective than a cream in the genital area.

    i rarely have to use Clobetasol anymore. I don't need Lidocaine as much anymore either. Desitin seems to always help...at least some! If I have any raw or irritated places, it definitely helps those!

  • justine89448
    justine89448 alison54950

    Posted

    Hi if the docters are unsure if it's LS they should do a biopsy the only true way to see the cell changes that happens with LS also quite a few women on this site don't just have LS some have combinations like LS and volvadynia I hope you get to the bottom of it. Dermavate can take 6 weeks to start working and ointment is best xxx
    • alison54950
      alison54950 justine89448

      Posted

      I have had biopsy which showed early stages of inactive lichen! I've been using dermovate for 3 months plus alongside epaderm, coconut oil and others! Had to use instillagel last night for relief along with amitriptyline. I've also used sitz bath with bicarbonate . Will try anything.
    • justine89448
      justine89448 alison54950

      Posted

      Hi I'm now in protopic. I'm getting good results downstairs but doesn't work around anus there I use dermavate still. For me hydromol ointment is a lifesaver xx
  • amanda59745
    amanda59745 alison54950

    Posted

    Hi alison, i have been experiencing a burning sensation and heat around my pubic hair region since november last year. This same feeling is around my anus, i have a small red area on the opening to my vagina which gets sore. Also my pubic hair feels like it is prickling me all the time. Knickers makes this much worse. i have seen 5 different drs re this  2 of them told me it was all in my head i thought i was going mad however, the last gp i visited gave me betnovate and  has referred me to a dermatologist, whome i see at the end of march.  The gp thinks it could be LS however i have no white patches  so im thinking vulvodynia, i also have  some lower back discomfort and hurt my back in september last year resulting in time off work. I experience  a cold feeling on my lower back some  tingling to buttocks and  strange sensations on my legs and thighs at different times. I have nevr had itching and i dont have any spots rashes or pain on urination. I think i may have some nerve trapped which can cause this  so im hoping i get some results when i see the dermatologist. The betnovate helps but the sypmtoms  have been there for months now. Yours could be nerve  pain too.   
    • alison54950
      alison54950 amanda59745

      Posted

      Hi Amanda, your symptoms sounds just like mine. I have inactive LS but confirmed vulvodynia due to nerve pain, especially when sitting, tingling in left leg and buttock. I have tried all medications but due to all side effects am no longer taking any. I use hydro mol to wash and occasionally coconut oil, this doesn't help all the time. The same with emu oil I've tried that. I was referred to chronic pain clinic and was offered an epidural nerve block. I had this on Tuesday. It can take a week to see if any benefit if at all. I would try anything to take away this constant pain and discomfort. I've just ordered calendula oil as have read this has helped others. Sometimes I'm so raw and dry, other times okay. I do get discomfort sometimes when urinating. Hate this!!
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