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Litchen Schlerosus

Posted , 10 users are following.

vicki14903
vicki14903

Hi, 

I posted recently regarding my experience at hospital after having my biopsy I was told I have eczema by gyny and told to use vaseline and discharged.

I wasnt happy with this so complained and was given a refferal to see a vulval dermatolgist.

Well im so glad I did as I had my appointment a few days ago and she said I did have LS and took photos to show me on my phone.She said my clitoris had started to heal over and I had quite bad scarring of the skin. She said to keep an eye on the skin and when I next see her in 3 months the photos could be compared to see if there was any improvement or if it had got worse. I have been started on Dermovate and a moisturizing cream to wash in to help mouisturize the area. She said a biopsy would not diagnose the condition only rule out other conditions and cancer. I feel so relieved that I insisted on seeing a dermatologist and got a proper diagnosis, I burst into tears as ive struggled for so long its such a relief to get a diagnosis from sumbody that knows about the condition and to finally start some treatment, she said I did not need to go through the biopsy at all😞

Anyone thats struggling for a proper diagnosis dont give up xx

2 likes, 17 replies

17 Replies

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  • ann67814
    ann67814 vicki14903

    Posted

    Glad that you got the right specialist in the end. It is what we would all like!
  • maggie81413
    maggie81413 vicki14903

    Posted

    So glad for you Vicki, not for joining this club we all wish we weren't in, but for insisting on a specialist in LS. I saw 2 GP's whilst waiting 4 months for my appointment with the lady dermatology consultant in the Vulval Clinic, and both assured me I didn't have LS. I'd read online about it and my symptoms matched, though I'm so fortunate to not have the itching. I do however have white skin and fusing around the perineum/fourchette area. I am following the regime of medication I've been given, but am also doing the borax. Good luck Vicki.

    • denise83884
      denise83884 maggie81413

      Posted

      I am new to this site and saw your comment to Vicki. Can you tell me about the Borax comment you made? I also am glad to have viewed Vicki's comment. I never knew there are vulval dermatologists/clinics. I'm near Boston. Hopefully, a search will bring me to such a resource. 

      Best wishes to you in your journey for comfort. 

    • maggie81413
      maggie81413 denise83884

      Posted

      Hi Denise, I am in the UK and asked my GP for a referral to a Dermatology Consultant rather than a gynaecologist because it's a skin condition and my consultant is a specialist in conditions affecting the vulva. Regarding the borax, I'm using a solution of two tiny teaspoons of borax powder in a small plastic cup, dissolved in warm water. I soak a cotton pad in the solution until dripping wet and wet my perineum area ( where I have white skin and fusing) and then leave the pad on as a compress for about 30 minutes, but keep dipping it back into the cup and re-applying it so it stays wet. There are many posts on here about borax. Thanks for your kind wishes. I wish you all the best too 🤗

    • mary221150
      mary221150 maggie81413

      Posted

      HI Maggie

      I’m in the uk as well. What is the make of borax you buy and where do you get it from?

    • fran24104
      fran24104 mary221150

      Posted

      I'm in the UK too.  The borax is ordered on ebay and is Borax (Sodium Tetraborate) Decahydrate.  It is mined by a company called "20 Mule Team".  I just thought I would reply in case Maggie is not still online.  I hope it helps.

       

    • maggie81413
      maggie81413 mary221150

      Posted

      Hi Mary, I am newly diagnosed, but have had it about 6 months now. I looked on the usual sites, but eventually found a site in Devon called The Soap Kitchen. They sell many things related to soap-making, including borax. Best wishes.
    • denise83884
      denise83884 fran24104

      Posted

      I appreciate your valuable information. Next week I will seek a professional in the Boston area. I have to check with my insurance for coverage.
    • denise83884
      denise83884 maggie81413

      Posted

      This sounds like something of benefit to me. Thank you so much! I appreciate your valuable information. Next week I will seek a professional in the Boston area. I have to check with my insurance for coverage.
    • maureen45349
      maureen45349 maggie81413

      Posted

      Where do you get Borax, I'm newly diagnosed as well living in Ireland. I'm using various ointments, they are not working. I don't suffer from itching at all but from burning sensation and frequent urge to go to the loo especially at night time. I'm always tired. I'm referred to a gynagoligist hopefully  I'll get treated soon

    • maggie81413
      maggie81413 maureen45349

      Posted

      Hi Maureen, like many other women on here, I'm suffering various things related to being post-menopausal. I'm 57, had a total abdominal hysterectomy 14 months ago due to pre-cancer. And since then I've had some vaginal atrophy and been diagnosed less than a month ago with LS. My symptoms are white skin on the perineum and tightening around the fourchette area, which may require surgery later on. I'm seeing a dermatology consultant at the Vulval clinic and am on Dermovate ointment (the steroid's generic name is Clobetasol) oestrogen cream and emollients. Also, I'm using borax solutions. Good luck.

    • myndi79876
      myndi79876 fran24104

      Posted

      good morning i have had an extremely huge breakout of ls going on for a week im using the steroid twice a day having tears and blisters very painful to urinate it doesnt seem to be getting better . is borax used to clean laundry and is it safe to use in the vaginal area .How long does this outbreak last and im in major need of help and relief thanks

  • denise83884
    denise83884 vicki14903

    Posted

    I'm pleased you persevered and I will follow your lead. I've suffered horribly from this condition. I am incontinent Winter brings on my bronchial problems causing incontinence. It is evident for me that the heavy urine leaks trigger the lichen sclerosis. I believe it is the excess, chronic moisture that brings it back out. I'm in a horrible flare right now. I also wonder if the antibiotics enhanced it to such a painful state. It hurts to sit. 

    I wish you well as no one understands when I unexpectedly yelp out "ouch!" No one else cares or offers any compassion. I offer YOU my compassion. smile

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