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Lichen Sclerosis - and general skin changes

Posted , 12 users are following.

Jeanie44
Jeanie44

I've been reading through this forum for a few weeks and have found it a huge source of comfort knowing that I am not alone in what I have been experiencing. 

I'm 47 and have been experiencing the symptoms of LS for around 7 years, roughly since my third child was born. I was given a biopsy 3 years ago and at that time my gynae told me it was possible I had LS and gave me a badly reprinted A4 photocopy with basic advice and a presecription for Dermovate, which I have used (badly I think) over the last 2-3 years. I was told at the time that I showed signs of some 'loss of architecture', but he didn't really explain what he meant by that and I worried that I'd caused this by my persistant itching. I think the small area of whiteness I have is from an episiotomy I had during childbirth. I have pain and tearing and like others I really miss the intimacy I had with my husband. He has been wonderful but our sex life is really almost non-existant (as parts of my body literally seem to disappear!).

In tandem with the itching in my genital area I itch all over. I have no signs of any rashes or spots anywhere but am taking a daily pill for Fexofenadine (antihystmine) to reduce the itching. At the same time as this itching I had a small area of excema break out on my face, and then Rosacea and/or adult acne all over my nose! Life can be very cruel. 

I tried everything and eventually discovered that the only treatment which helped the skin problems on my face was antibiotics (Lymcyline). I hated being on these (2 years!) but they worked. Every time I come off the antibiotics my face flares up again.  I worry that some of my symptoms might be side effects of one or other of these medications but have no evidence to prove this. In some ways the LS (if this is what I have) improved a little when I was on the antibiotics. 

My skin has always been so good that I've found these changes incredibly hard to take and find it hard sometimes to stay positive. 

I'd be interested to know if anyone else has experienced similar itchiness and skin problems simultaneously with the onset of LS? 

I've been reading about the use of Potassium Borate on this forum and of Bicarb of Soda and am trying the latter. I've also ordered some Emuaid cream.  For those based in the UK, can you let me know if you have found a source of the Potassium Borate? It sees to be banned in the UK which makes me very wary about using it. (you should have heard the chemist when I naively explained that I was looking for Borax for treatment of LS....!). 

Thank you.

Jeanie

0 likes, 33 replies

33 Replies

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  • Anna777
    Anna777 Jeanie44

    Posted

    Hi Jeanie,

    Just to be clear, it's sodium borate, (or sodium tetraborate, or disodium tetraborate) not potassium borate.

    It's wise to be skeptical, and when I first heard about it, I went on-line to do a little research.  I recommend you do your own search, as there is a wealth of info available about the many uses of sodium borate.  Many, many women on this site have found excellent results (not just one misguided soul trying you to sell you something.)  While you're at it, look up the side effects of topical steroids.

    The only way to find out if it works for you is to try it for yourself.

    • Jeanie44
      Jeanie44 Anna777

      Posted

      Hi Anna

      Thank you so much for correcting my mistake. Ironically I knew it was sodium borate (NOT potassium borate). and have been looking into the properties quite extensively but this was just terrible carelessness on my part. I've tried to edit the original text to avoid anyone else making the same mistake but it doesn't seem to be possible. 

      I take on your caution too about the side effects of topical steriods (I have been worried. about this for some time) which is in part why I am keen to find alternatives if they are safe and effective. 

      I've very much appreciated the honesty and help I've found on this forum. 

      Thank you for taking the time to reply. 

    • Anna777
      Anna777 Jeanie44

      Posted

      Hi Jeanie,

      You are very welcome!  If other people had not contributed to this forum and shared their remedies, I would still be deteriorating instead of improving.  What a blessing that women from around the world can reach out and help each other like this.  As has been mentioned before, many doctors are not well-versed in this condition, and so many of us will go back to our next appointment with our success stories that will hopefully enlighten them about all the treatment options for their next patient.

  • dianne.us
    dianne.us Jeanie44

    Posted

    I have not personally read any posts claiming a cure but have seen many in remission. I have had this for more than 20 yrs and now at. 53 am having flares. I am managing them with clobetasol, emu oil, a wash down with baking soda and water in a squirt bottle after using the toilet and daily use of estrogen oil on the labia and progesterone cream on my thigh/abdomen. I was in remission for many years after having my children and did not need anything but jojoba oil to keep it moisturized before this recent return but I believe my hormones are causing much of this as my body prepared for premenopause. I still get my monthly period like clock work but they are getting shorter in length. I also use an essential oil blend diluted if the itch gets to the point where the cooling helps...usually right at ovulation time. Keep a daily record, it helps

    • Neldog
      Neldog dianne.us

      Posted

      estrogen oil?   Not heard of that one....  Is easily available?    Off to try and find some online....  Xx

       

    • dianne.us
      dianne.us Neldog

      Posted

      I tried to reply to you with the estrogen I use but. The moderator deleted my response. I put product info but I guess that is against the rules. I am switching to a private Facebook group. I am trying to help but get blocked? It not my product that I am selling its just one I purchase online for the last 10 yrs
    • Sedg
      Sedg dianne.us

      Posted

      Interesting Dianne that your helpful reply was blocked !! I too have been blocked and after years of experimenting and researching and trying products I was only letting sufferers of LS know of a product I had found helpful in much the same vain that sodium borate and Emuaid are allowed. I am disappointed to be deleted. There is so little choice of treatments

      One would think there would be more open discussion on this Forum so sufferers at least are able to make their own minds up.

      Warm regards Stephanie

    • Sedg
      Sedg

      Posted

      Ps Dianne what is the Facebook LS group you mentioned please smile

    • Neldog
      Neldog dianne.us

      Posted

      Its possible to send private messages on the forum.    Just click on the envelope below the green splodgy square and the  black star to the left of this post!

      xx

    • dianne.us
      dianne.us Sedg

      Posted

      I tried to PM you, hope it went through
    • Jeanie44
      Jeanie44 dianne.us

      Posted

      Hi Dianne

      Thanks for your message. It's been a real help to me. I think your suggestion to keep a daily record is a good one. I've read quite a lot about diet too on another thread and think this is something I need to tackle. I'd like to see if there is a direct link between what I'm eating and when I have a flare up.  I also agree that hormones seem to play a part in this or at least don't make things any better!

      I think I've accepted now that this is something I will have for life but it is possible to regain some sort of control and not let it take over your life completely.

      Thank you.  

  • Jeanie44
    Jeanie44

    Posted

    PLEASE NOTE : Reference to Potassium Borate in my message above was an error. It should have stated Sodium Borate.(or sodium tetraborate, or disodium tetraborate)
  • sue162
    sue162 Jeanie44

    Posted

    Hi,

    when things are are under control has anyone used Emu oil or Perrins?  I have sent for some oil only when told to use it after things have been controlled.  I've been using dermal 500 just a bit of it and it seems to help in the shower.  I never thought of moisturising there but I suppose we moisturise our hands and face I guess,  I have had excema for thirty years and so I'm used to betnovate ointment, I've never worried about the ointment and certainly haven't gone into researching excema I've just coped with it and just use a tiny amount on flare up areas,  it's never thinned my skin in that time as flare ups are never in the same place.  I'm trying to remain positive that this is the same really to control it at first then manage it there's no other way for me to cope at the moment or I'll go crazy with worry.  

    • Jeanie44
      Jeanie44 sue162

      Posted

      Hi Sue

      I was prescribed Dermol 500 by my doctor for washing instead of any kind of soaps or shower gels. I found it a very good alternative, and it never stings. I used to use it as an additional moisturiser after showering but am currently trying to Emuoil, as an experiment (only for the last 4 days though).  It seems to be helping but it's hard to say whether it's any better for me yet. I'm sorry but I don't know what Perrins is. Can you explain?

      I think the key seems to be keeping well moisturised with whichever product works best for you. I see other contributers mentioning a variety of different oils - almond, coconut, etc. 

      There are many posts here about how to treat LS if you have a flare up, with some expressing preference for a steriod cream and others finding alterantive methods, such as the use of Bicarbonate of Soda or Borax work well for them. 

      This was the first time I've posted here and in the week since I joined this forum I've found the information and support I've gained here to be more helpful than anything I've had in the years I've been trying to manage my condition on my own.

      I hope you manage to stay positive and find some answers here too. 

    • sue162
      sue162 Jeanie44

      Posted

      Hi Jeanie,

      i just wanted to tell tell you the Perrins is a name of the brand, if you google it Perrins Complete is the one people on the website use for L S.  If you google UK order form, I didn't get that it was £28 for a pot but is natural ingredients because it was cheaper I got the pure emu oil.  It's scary putting stuff down there at first in case we react isn't it but like you say if it wasn't for here and the Internet which has also scared me as well I would be none the wiser and feel very isolated and alone.  Why should we though as it is a diagnose we have had just like other disorders.  It's just in a private place and some friends relatives don't really take to talking about this area.  X

    • helen34256
      helen34256 sue162

      Posted

      Hi

      I started using Perrin Naturals Creme Complete. I use it daily, starting to use less now. Very helpful with the itching & the lesions are gone.

      Don't want to use steroid creams, they thin the skin.

      Hope it helps

       

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