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What constitutes active Lichen Sclerosus

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samantha1970
samantha1970

Hi,

I'm quite new to LS. I think I've had LS for 2-3 years at least but only diagnosed in January this year. I started with Dermavate (Clob) but then this activated my HPV so I'm now on Betnovate. I don't feel as though I have LS under control as the Betnovate has not alleviated the burning/tingling/itch or reduced the white patches.

i have white patches around the clitoris and the hood and some of the upper parts of the vulva near the clitoris. But no burning/tingle/itch in this area. The left labia manora has disappeared (shrunk into itself).

Towards the other end of my vulva and perenium On one side in particular I have the burning/tingling/itch but no white patches.

can anyone please advise if all of this is active LS or what they would suspect is.

thanks, Samantha

0 likes, 15 replies

15 Replies

  • renee77108
    renee77108 samantha1970

    Posted

    Sounds like it.  A few natural things you can try.  A couple of pinches of bicarbonate of soda in 8 ounces of water in a spray bottle.  Use after every bathroom break.  Many have seen noticeable relief with this.  Myself, I have good luck with witch hazel in a spray bottle...dab it dry and then use a bit of 99% or 100% aloe vera gel on the area. It moisturizes, helps stop the itch and with me after 6 weeks of use corrected some of the scarring and shrinking that was occuring.  At night I use a bit of manuka honey in the area...has also made a difference.  I also have cut out sugar, grains and dairy...which has further helped.

    After years of suffering I am pretty much in remission now as long as I am vigilant about my routine.  I prefer the holistic methods as they are not harmful. Steroids have very nasty side effects and I have chose not to use them...and have done so successfully.  It's mostly what works best for you.  But be willing to try new things to see if you can make yourself more comfortable.

  • samantha1970
    samantha1970

    Posted

    Hi Renee,

    thanks for for all your tips and advice. As I have HPV then alternative ideas are always welcome as some conventional medicine activates the HPV and accelerates the growth of vulva/vaginal cancer.

    samantha x

    • lizziewizzie
      lizziewizzie samantha1970

      Posted

      let us know how you get on!

      sounds like LS, and, renee's suggestion - in your case in particular sounds very promising.

      liz x

    • Chrisy
      Chrisy samantha1970

      Posted

      Hi,  Just wanted to ask who told you that the medicine activates HPV and can accelerate the growth of vulval or vaginal cancer.  I ask as I have LS and HPV and obviously am concerned.  I like to check things out as there are so many scare stories out there.  Some GP's even get it wrong.  I would not like to stop treatment by Dermovate through fear only to later find they have got it wrong again  and my LS progresses as a result when I have it calmed down lately..
    • samantha1970
      samantha1970 Chrisy

      Posted

      Hi Chrisy,

      Both my vulva dermatologist in UK and regular dermatologist in Kuwaot told me. I think it's only as I brought it up in my medical history that they have done so. I brought it up as I googled HPV and Dermavate online to see interactions and a couple of research articles also mention it.

      Do you know which HPV strains you have?

      Samantha

    • Chrisy
      Chrisy samantha1970

      Posted

      No I didn't know their were different strains.  I love this site so informative.  I will be asking my GP lots of questions next time I go.  Thank you for the heads up.  I just got told I had the HPV virus after my colposcopies as a result of abnormal smears.  I have also since learnt that Ls they think can result in abnormal smears.  I will be googling too.  Thanks again,  Chrisy
    • lizziewizzie
      lizziewizzie samantha1970

      Posted

      how are you getting on now samantha?

      have you tried quitting gluten and grains? that was the one thing that helped me. i have also cut out dairy and i make coconut milk instead and dandelion coffee with it....think i have to extensively detox too and help my liver. just wanted to mention that theres a woman in the alt med section who seems to have overcome the condition. she had the support of a chinese med practioner and it was coptidis rhizoma and other strategies which did it for her.

      i've been reading that hidden infections are one of the many facets of autoimmunity which we need to address....and am working my way through them all...!!

    • samantha1970
      samantha1970 lizziewizzie

      Posted

      Hi Lizzie, thanks for asking. The aloe Vera and witch hazel seem to be helping along with the Betnovate, less white areas and less itch/tingling. Although if I miss a day of Betnovate the tingling starts 😒. Only problem is using the steroid has activated the HPV I have and now I'm suffering from warts as the steroid lowers the immune system. I didn't know I had this strain of HPV until now. 

      Interesting I've tried to be low gluten for a few months and about 3 weeks ago gave up dairy, this has definitely helped with my IBS symptoms, let's just say I haven't had any colon pains since! I'm going to try and find somewhere for allergy testing to check too.

      im back with the vulva dermatologist in three weeks so hope she has some solutions.

      hooe all is well with you and thanks so much for the advise, every little tip on this sight is so helpful.

      thanks for asking.

      Samantha

       

    • lizziewizzie
      lizziewizzie samantha1970

      Posted

      so glad the strategy is helping your IBS ....i suppose you've heard of increased intestinal permeability? its the route of all auto-immunity apparently...as per the ancient greek all disease begins in the gut...so your IBS is a strong indicator to you...the rest of us may have constipation or no obvious bowel symptoms but still the means of access for this condition is through the bowel walls that loosen due to underlying inflammation. its how we get the allergies and hidden infections. i'm trying to work my way through the various strategies that are multiple...there's no one thing...so do appreciate this dialogue. thanks! the problem with reliance on a steroid is that it creates a dependence which you're exhibiting ie you have to take it or you get a return of symptoms. then the blood sugar gets messed up and its a vicious cycle with more and more steroid being needed. but in your case with the warts and from your research the steroid is contra-indicated and making you worse. might be best to discuss this in the alt med section. a woman over there healed herself ...just not to upset those taking steroids and happy for the time being.

      there is an on-going discussion at the mo. see you over there? i agree every little advice and experimentation to explore the whole strategy and to try to work it out for ourselves is so appreciated. thanks very much for sharing. x

    • lizziewizzie
      lizziewizzie

      Posted

      or happy to continue here as the subject has come up. how are you minded at the moment? recovering from IBS is major...i applaud you. how long have you had it?
    • samantha1970
      samantha1970 lizziewizzie

      Posted

      Hi Lizzie, can you let me know the title and exactly where to find the other discussion please, I'd be very interested to read it. Thanks, Samantha
    • samantha1970
      samantha1970 lizziewizzie

      Posted

      Hi Lizzie,

      tbh since I cut out the dairy and reduced he gluten my colon feels normal, in fact I wouldn't even know I had an issue! The problem started about 3 years ago with stomach area pains and went on to be chronic inflammation of the gall bladder which I subsequently had removed about 18 months ago. About a year ago the colon pains started, but now they are under control. Aloud I still get the odd gallbladder (missing) area pains, but not as bad as I did when I ate more gluten and dairy.

      I'd be really interested to read what has worked for others. I'm retrying to find somewhere to go for private allergy testing to check it all too.

      take care, Samantha

    • lizziewizzie
      lizziewizzie samantha1970

      Posted

      Great strategy and well done for the progress you've made. so sorry you lost your gall bladder...that can be an effect of the bowel inflammation...but you can still do well. These GMO grains and all the additives are wicked abuses of the trust we should be able to place in our food sources. But moving on.

      I'm very determined to recover from this.

      The group gathering itself is linked to 'fixed up' who does seem to have done just that (!) on alternative medecine.You'll see me and others chatting .You get to it by going to the alphabetical index at the top searching under A. You'll find us ..see you there. I will pm the two books i've read so far. don't know if we can share resources here?

      love liz xx

    • samantha1970
      samantha1970 lizziewizzie

      Posted

      Many thanks Liz, I've posted in that thread now and would love to read the books xx
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