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Help needed

Posted , 8 users are following.

karen007
karen007

Hello

My 83 year old Auntie has LS & has phoned me in tears. She is in agony with it. Her GP has given her lidocaine to use & she also uses sudocrem. Clearly this is not helping at all. She is a lovely lady & I would really like to help her. I told her I would ask on this forum.

She says her vulva is red, sore & she keeps scratching (though tries not to). She has taken to going without underwear in the house to let the air circulate in hope this will help

Any advice on creams etc would be much appreciated. Many thanks

1 like, 17 replies

17 Replies

  • Hazel1962
    Hazel1962 karen007

    Posted

    Hi Karen,

    Your aunt needs to get her Doc to prescribe Dermovste ointment, she needs to put this on daily for a couple of weeks before bed to give it a chance to absorb. Hopefully things will calm down after the two weeks then she can start using it twice a week continuously.

    In the meantime get her some Lucy Bees coconut oil to use liberally, it's very cooling and soothing. She could also try emu oil. The former is available from Sainsbury if you are in the UK, the latter from amazon. I know others are also using pure aloe Vera and some are trying baking soda mixed with water. 

    She should also use something like Hydromol or another emollient to wash with. She should avoid letting urine settle on the skin and she should also moisturise with one if the suggested products after urinating.

    She is definitely not alone in suffering this awful condition. She should also get a referral to a Dermatologist or Gynaecologist and have it properly checked.

    Hope she gets sorted, it sounds like she is having a traumatic time.

    Best wishes

    Hazel

    • Hazel1962
      Hazel1962

      Posted

      That should read Dermovate it's also referred to as Clobestol on these forums.
    • karen007
      karen007 Hazel1962

      Posted

      Hazel- thank you so very much. I will go & get her these creams & see about getting her a GP appointment x
    • Morrell1951
      Morrell1951 karen007

      Posted

      Karen, kudos to you for coming here for your auntie. She needs to see a gynaecologist. GPs mostly aren't so good with LS. Scratching makes it much worse. She can soak in a warm bath with a third of a cup of baking soda in it. She can also use a squeeze/spray (postpartum treatment) bottle of water and half a teaspoon of baking soda after every pee. Urine is irritating, so cleaning it off the red skin helps. Then applying a barrier like coconut oil or Vaseline to the clean dry skin will help.

      Glad you came. We're all in the same boat and it helps us to help.

    • margaret289
      margaret289 Morrell1951

      Posted

      I saw a gynaecologist recently who confirmed that creams are relatively useless in any area where sweating is involved.  You definitely need to make sure your aunt requests ointment rather than cream.  It absorbs better and will not just rub off on clothing so easily.

       

    • Morrell1951
      Morrell1951 margaret289

      Posted

      Good, that confirms what Dr. Goldstein said. My pharmacist was happy to change my prescription from generic clobetasol cream to Dermovate brand clobetasol ointment.
    • karen007
      karen007 Morrell1951

      Posted

      Thank you so much. I have got her some baking soda & spray bottle, and some Vaseline. These tips sound very good advice. My Auntie is hopefully that this will help ease things x
  • laura2218
    laura2218 karen007

    Posted

    Hi Karen,

    The best cream is Halebetosol. 

    Your aunt needs to see a dermatologist that specializes in LS

    and have a biopsy.

    Sitting in a cool bath helped me. Warm baths made it worse.

    laura

     

    • Morrell1951
      Morrell1951 laura2218

      Posted

      Yes, Halobetasol is among the list of utra-potent topical steroids:

      Clobex Lotion/Spray/Shampoo, 0.05% Clobetasol propionate

      Cormax Cream/Solution, 0.05% Clobetasol propionate

      Diprolene Ointment, 0.05% Betamethasone dipropionate

      Olux E Foam, 0.05% Clobetasol propionate

      Olux Foam, 0.05% Clobetasol propionate

      Temovate Cream/Ointment/Solution, 0.05% Clobetasol propionate

      Ultravate Cream/Ointment, 0.05% Halobetasol propionate

      Vanos Cream, 0.1% Fluocinonide

      Psorcon Ointment, 0.05% Diflorasone diacetate

      Psorcon E Ointment, 0.05% Diflorasone diacetate

      Topicort Spray, .25% Desoximetasone

  • justine89448
    justine89448 karen007

    Posted

    Your auntie really does need help it's a very frustrating diesease. Lidocaine is an anesetic it should give her some relief but like many have said it's not a treatment. I use dermivate to treat and johnsons uncented jelly for babies to mostoirise and keep sweat and urine off skin. I rinse after every wee and re apply. I hope she gets some relief soon xx
    • karen007
      karen007 justine89448

      Posted

      I just want to say a huge thank you to all you lovely ladies on here who have taken the time to give your advice. It seems she is using the steroid cream anyway, but the other tips she is going to try. But the other thing she was really pleased about was that she is not alone in this condition. She was over the moon that you lovely ladies were good enough to offer your help. She wanted me to pass on her heartfelt thanks. Bless you all x x x
    • Morrell1951
      Morrell1951 karen007

      Posted

      My experience is that the Dermovate very gradually (it took over six months for me) gets the inflammation under control. Over and above that we can do lots to prevent inflammation (I avoid sugar and manage stress) and prevent contact with irritating bodily fluids. Your aunt's right to go commando as much as possible. One thing that has made a huge difference to me – maybe I had a sensitivity to caffeine – but after I quit my two cups of coffee a day I stopped having urgent and multiple loose bowel movements. This healed the sore area around the anus very quickly and made sitting much more comfortable. It seems that strong black tea does the same thing to me. We're all different, but we can see if some of the things that work for others might work for us.
  • winifred02134
    winifred02134 karen007

    Posted

    Hi Karen , just like to add to what everybody else as said , l was given lidocaine right at the beginging of getting LS l was told to put it on 15 mins before l passed water if l could , it made it possible to pass water without being in pain, l only did this while waiting to see a consultant . l did something stupid ,after getting my LS under control l discharged myself from the consultant , l underestimated LS now l am going back to the consultant after a 14 week war with my docter . Get your aunt to a consultant  a s a p  GP,s just cannot handle LS . Good wishes to your aunt, she is very lucky to have a niece as nice as you.
  • Amitka
    Amitka karen007

    Posted

    Man, this makes me v. worried for my future.  I am not using anything but the steroid cream and that v. v. v. sparingly.  I wish her luck in finding some relief.  I remember an article by someone on some site or other saying sea bathing gave her all over relief.  It's the wrong season but sea salt is available in the shops.  Worth a try?
    • Morrell1951
      Morrell1951 Amitka

      Posted

      Amkita, LS comes in degrees of aggressiveness. And it gets out of hand when untreated for decades. You're using the right prescription and learning all the good stuff we can do on top of that, so you don't need to worry about the future.

      Sea salt sounds good, so are epsom salts. We've all been talking about how good baking soda is – 1/3 cup in bathwater. Hanny had a dilation procedure and the opened part wanted to keep healing shut. Baking soda has really helped her get settled down. Some of us put a smidge in a spray bottle of water and mini-bidet after bathroom visits.

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