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diagnosed with ls over 10 years ago

Posted , 11 users are following.

joyce55424
joyce55424

Experiencing worst flare up ever!! Locum Dr not much good, havent been seen by gynecologist or dermatologist was told no point. Given Dermovate but can't  tollerate pain of applying it. Having bicarbonate of soda/coconut oil baths and applying vasseline and emuloid. Taking loads of painkillers now suspect cystitis also because of stinging and redness so trying over counter remedies. Sexual health clinic and A and  E don 't know what Lichen Sclerosis is!! This is awful.

0 likes, 18 replies

18 Replies

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  • Kruthko
    Kruthko joyce55424

    Posted

    When I have really bad flare ups I use ice packs. The only thing that alleviates the pain.    I also take 800 ibuprofen and if it is really, really bad. Vicodin. 

    My new revelation is that what you wear really, really makes a difference. 

    During flare ups dresses or skirts only.  

    I only wear loose clothing. Had to give up my jeans.  My latest discovery is no underwear.  Even cotton seems to cause problems.  Seems gross, but it working really well for me.  Hope this helps. 

    • joyce55424
      joyce55424 Kruthko

      Posted

      Thanks, amazing what loose clothing can do!!! My jeans are gone... things settling again.
  • Tybear
    Tybear joyce55424

    Posted

    Hi so sorry to hear of your flare up, awful is not a strong enough word for it. I had the figure of 8 from front to back I could not move for fear of splitting. Like you I couldn't apply dermovate as the pain was unbearable. Doctor gave me numbing gel to apply although it initially stung it numbed it enough to enable to apply dermovate. I hope this helps xx

    • Tybear
      Tybear

      Posted

      Hi I agree with  Kruthco, underwear free wherever possible, I took co-codamol on doctors advice before applying numbing gel also helped me rest ! 
    • Tybear
      Tybear

      Posted

      Also stress played a major factor with me, I joined a meditation group too x
  • hanny32508
    hanny32508 joyce55424

    Posted

    This will be my third try to take part in you discussion.  Trying to help you with some diet tips that worked for me.  And trying to tell you to avoid Vaseline, use coconut oil or emu oil instead.  See whether it works this time.
  • hanny32508
    hanny32508 joyce55424

    Posted

    The biggest trigger has been added sugar.  Next to that - no gluten, no alcohol, no caffeine and limited dairy. (cheese is a sure trigger as well)  A matter of trial and error perhaps.  If I 'behave' with my eating habits I'm doing well. 

  • toni44td
    toni44td joyce55424

    Posted

    Hi Joyce,

    I've had LS for 13 years now and I feel your pain - literally!  My GP prescribed Dermovate a few weeks back, but I gave up using it as it seemed to make it worse.  I went back to GP again today to see if there was anything else I could try and she said keep using it even though she had a look at my LS and admitted it looked red raw!!!  She couldn't prescribe any emollients either, but told me to buy Dermol cream.  This is driving me mad!

    • Tybear
      Tybear toni44td

      Posted

      Hi ask doctor your doctor to prescribe numbing jel as I was the same as you and couldn't use the dermovate as it literally had me in tears to put it on that I gave up. I used the jel and within minutes the area was numb to enable me to use the dermovate.... good luck xx

    • joyce55424
      joyce55424 toni44td

      Posted

      I went back to Dr and got Timodine, what really helped was bathing with bicarbonate of soda and coconut oil,  using vasseline as a barrier  all the time and loose clothing and knicker free when possible!! glad to say I am now clear and pain/itch free at the moment. Still taking care what I wear and eat. Greatful for all ideas from this site. Don't just suffer, straight back to the Dr, hopefully someday there will be a treatment!! Also just gor the marina coil fitted, no more monthly periods, so hopefully lessen flareups and not having to use any sanitary products, as think this was also trigger. It is awful, hope you're well very soon. Xx

    • joyce55424
      joyce55424 toni44td

      Posted

      I  use dermol for daily washing, avoid any soaps or shower gels.
    • toni44td
      toni44td Tybear

      Posted

      Thank you, will certainly mention that to GP.
    • toni44td
      toni44td joyce55424

      Posted

      Thank you for your advice.  When you say bicarb and coconut oil, what quantities do you use? I was using Sudacrem, but it made it worse!!  I had a hysterectomy last year so I'm now menopausal which I think isn't helping.  The GP said I should think about HRT.  I've never suffered as much as I am now so maybe I'll consider it.  Trouble is I don't think the Drs know too much about it, although she kept going on about it being treated in the 'community' as opposed to being referred to the hospital!  All the best xxx  

    • joyce55424
      joyce55424 toni44td

      Posted

      2 table spoons bicarb 1 spoon coconut oil in warm water not too hot. Interesting as I thought getting a hysterectomy would cure all!! X
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