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Itching Unbearable

Posted , 21 users are following.

kimmiesue
kimmiesue

Hi. I am new to this site and looking for help. I was diagnosed with LS just a few months ago and have had it since April and I wouldn't wish this on my worst enemy. I am so discouraged. I have been reading a lot of discussions and most talk about managing pain but my main problem is unbearable itching. This can lead to pain if I scratch too much but otherwise I don't have the pain. I started out on the clob for 6 weeks, per Dr. then was supposed to switch to a week a month. Clob worked well for the 6 weeks but LS itching came back with a vengeance 5 days after stopping it. Tried using it again and it made everything worse. My dr has no other suggestions except clob but I am telling you it makes me itch so bad after one use now that it takes days to recover. I've had moderate relief with using tea tree oil and lavender oil and some various other things but the itching has flared up so bad at night I can't sleep. Just looking for some advice on the itching. This is such a depressing disease!! Thanks.

1 like, 38 replies

38 Replies

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  • lichen40876
    lichen40876 kimmiesue

    Posted

    I sympathise with you completely. I've been there! Used to think my life was over sounds dramatic but honestly sleep depravation wore me down. I am living proof you will turn a corner. I itched unbearably for almost a year until the clob. I tried everything else but nothing worked. I still have flare ups but not as severe. I use it very sparingly and not as often as prescribed. Bathe and then use when dry. Persevere I hope you get there soon.
  • andrew46586
    andrew46586 kimmiesue

    Posted

    Why not take a good antihistimine for the itch? Sorry but I do not know what you mean by clob.
  • nannylin
    nannylin kimmiesue

    Posted

    I feel your pain it's an awful condition to endure. Try to get yourself referred to a dermatologist or gynaecologist who specialises in vulval health. They are much better than GPs who really don't have good knowledge of this condition. There are lots of things you can try to relieve the itch but beware of trying too many things at once a

    and of course some things may not agree with your skin so it gets worse. Unfortunately most of us have found that it's all trial and error. I hope you get relief soon and good luck.

    • kimmiesue
      kimmiesue nannylin

      Posted

      It is my GYN that prescribed the clobetasol and doesn't appear to understand when I explain how it makes my symptoms SO much worse now when I try to use it. I just tried it again last Monday and within an hour I had uncontrollable itching worse than any itching I've had without using it! It took two whole days for it to subside. The lavender oil works really well for daytime but nothing works at night. I also know there is a dietary component for me but haven't gotten that part figured out yet. Anyway, I will just have to keep reading and trying different things. Thanks for the encouragement.
    • Morrell1951
      Morrell1951 kimmiesue

      Posted

      Start with cutting out any big servings of sugar. Including large amounts of fruit. The diet component doesn't need to be complicated. I know it is for some, but take the low-hanging fruit first. Har. Har.

      I used clobetasol for 18 months, then my gynae switched me to tacrolimus (Protopic is the brand name). It sort of burns, but I'd take that over itching.

      Also, are you getting clob cream or ointment? The cream has extra ingredients that bother some people. My pharmacist sold me a renewal, changing it to ointment and just typed 'patient request' on it.

    • kay70189
      kay70189 Morrell1951

      Posted

      Hi Morrell

      I realise this is an old thread but i was wondering how you were doing using Protopic. My skin specialist has prescribed Protopic but i haven't used it yet. Still using clob.

      Kay x

  • sandra01720
    sandra01720 kimmiesue

    Posted

    I use emuaid alongside my steroid and feel it does almost as much as the steroid for itch relief. It's natural and can be purchased on Amazon. Expensive but last quite long.

    • molly89601
      molly89601 lichen40876

      Posted

      I also use EmuAid (Max) as does my twin with LS.  Last night I tried Perrins Complete and I am amazed at how it took away my pain and discomfort.  I still use Clob twice a week and have recently added Estrace (my new dr. won't use compounded pharmacies  😩wink   

      For relief the EmuAid (Max) and Perrins help my symptoms way more than the Clob.

       

  • jeri24294
    jeri24294 kimmiesue

    Posted

    Hi Kimmiesue, so sorry to hear your plight.  I haven't had itching issues with my LS.  But I would suggest you try sitz baths with baking soda.. after, keep the area as dry as possible.  I use cornstarch or talc with pwdr puff after applying the clob to  keep dry.  So many of the folks on this site use crisco.  I haven't tried that yet.  I also take "simply sleep" or benydrl about every other night and it does give me a good night's rest.  I hope you find relief.  You are right this is a horrible disease and doctors don't seem very interested in helping us.
  • mary_58782
    mary_58782 kimmiesue

    Posted

    This is what has helped me. Ask your doctor to prescribe Lidocaine ointment. Although it may sting some, it will numb the area and temporarily stop the itching. This will provide some relief. For immediate relief, use ice. It interrupts the itching cycle. For the placed where you have scratched, get hold of some diaper cream. I use Desitin 40% original strength. It has 40% zinc oxide in it and for some reason the zinc helps. This is a barrier cream and it keeps urine off of the area and starts to allow the areas to heal. The itching at times has driven me almost crazy. I am so sorry that yo
    • mary_58782
      mary_58782

      Posted

      are experiencing this. Good luck and I hope these ideas will provide you with some relief. Some gynecologists are more knowledgable than others. My old gynecologist knew all about it. My new one knows very little about it. She is much younger. I will be changing to another one because I need an experienced gynecologist. My dermatologist knows a lot about it too.
  • claire12259
    claire12259 kimmiesue

    Posted

    Hi Kimmiesue

    try cutting out dairy/sugar/gluten from your diet - takes 2-4 weeks to kick in but hopefully that will help you improve greatly. Also use bleach free loo paper/wash your undies and trousers etc in perfume free washing powder - dont use any fabric condition and wash through twice.  Dont use soap on your nethers, just tepid water. I used the steriod initially and it worked then when it came back the steriod just seem to antagonise it, I cant use anything topically, it just irritates it more. Good luck xxx

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