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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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  • MaryMostyn
    MaryMostyn Jeanie44

    Posted

    Hi Jeanie,

    I am 67 and have had LS and LP for about 5 years.  My genital area is pretty much non existent now I have scarring and white patches.  I use dermovate (twice a week to keep it under control) in that area but my main problem is my body itching especially at night.  I have Lichen Planus spots on my body particularly where skin meets skin I.e. Under my breasts, upper inner arm and upper inner thighs.  These patches burn and itch and drive me crazy. I take an antihistamine tablet at night which helps a bit with the itching. Stress definitely makes things worse.  The most disheartening thing for me is my GP is not interested as far as he is concerned there is no cure I am giving everything to contain it i.e. Dermovate, Vagifem and emolument creams and that's it!  He never looks at that area and I feel so frustrated.  

    I too have found this column to be hugely helpful.  I wondered if the body itching you have is Lichen Planus.  Mine is barely able to be seen by the naked eye but I can see the faint lines because I can feel exactly where these areas are.  

    • Jeanie44
      Jeanie44 MaryMostyn

      Posted

      Dear Mary

      Thank you so much for your reply. I'm sorry to hear that you've had such a bad experience, although it sounds so similar. I've never seen the same Gynae twice and always (except once) they were men. I have no issue with this in principal but I can't help feeling a woman might have been a bit more sympathetic. My GP was very good but she's been on sabatical for over a year. I think the lack of continuity in care and treatment has really been difficult. 

      Thank you for your suggestion about Lichen Planus. I had very similar issues as you describe under my breasts, and saw a specialist dermatologist some years back. He took 2 biopsies and told be it was likely to be a fungal infection but perhaps it is all connected. 

      I take the antihistamine in the day - first thing. I wake up crazy itchy all over but the antihistamine only lasts me 12 hours and I can cope at night, usually.

      I am working full time, running a business and trying to cope with running a household with three children so life is stressful and there is never enough time to really spend sorting myself out. I think I need to try and find a way though. This forum is giving me more confidence to go back to the GP and try not to give up on accepting things can't be any better than they are. 

      Thank you. 

       

    • MaryMostyn
      MaryMostyn Sedg

      Posted

      Like many people on this forum I was initially treated for thrush for about two years, I thought I was allergic to toilet paper, it was a nightmare.  I was finally referred to a consultant Gyni who did a biopsy which confirmed LS.  He sent me away with a tube of dermovate and no interest in a follow up.  We moved area and my new GP organised for me to see a consultant dermatologist, she was fantastic. She was horrified at seeing my genital area with such poor lack of care from the GP. She wrote to my GP with a list of instructions and said she would be happy to see me if I was concerned.  A year later I went back to my GP after having a bad attack and wanting reassurance I asked to be referred to her again. I was told that Southampton Hospital now referred these cases out to Winchester Hospital.  I waited weeks for my appointment and it was like going back to the beginning. The doctor at Winchester who examined me said 'she had seen much worse cases' and the loss of my genitals was normal in women as we get older.  I have now moved area again and come under Poole/Bournemouth NHS.  You are quite right I need to find my own Consultant dermatologist who specialises in LS and get my new GP to refer me.  If anyone on this forum is local to me and can recommend someone I would be very grateful.

    • Neldog
      Neldog MaryMostyn

      Posted

      I have been referred to dermatology in Dorchester where a dr Koch (she is German) has a special interest in LS.   However the appointment took months to come through and its been cancelled twice at short notice.

      i actually wanted to try low dose natroxone and was hoping she would agree to prescribe.    However, in the meantime, i am having some success with borax and emu oil and i bought the ldn via a private prescription, only to fibd after 3 weeks it makes me really really dizzy..

      i have previously been to Poole where they confirmed Ls without a biopsy and confirmed the architecture had changed, but beyond steroid cream, were at a loss.    They drew me a picture of what was missing, but all my questions were met with embarrased silence.

      Just because your local area is poole bournemouth  it doesnt mean you cant go out of area if there is a particular specialist you want to see.     I was referred to plymouth when i asked. Though i have yo get myself there and back.

      xx.  

       

    • MaryMostyn
      MaryMostyn Neldog

      Posted

      Dear Nelsmydog

      thank you so much for your response.  I will make an appointment with my GP and ask for a referral.  There is nothing more frustrating than having to talk to doctors who know less than you about the condition.  Than you again.

    • Neldog
      Neldog MaryMostyn

      Posted

      Good luck with it, i will report back if i actually do get to see her.....

      xx

    • karen41728
      karen41728 MaryMostyn

      Posted

      Hi MaryMostyn

      Sorry to hear this I know just how you feel... I'm 58 and have LP.. do you have the oral LP too... I think sugar is a big contributor.. I find now I have to avoid certain alcoholic drinks... I love baileys but I itch like mad it is far to rich also spicy foods should be avoided.. all these things set off the itching..not forgetting stress!!! I had trouble years ago after an abnormal smear test had colposcopy and was diagnosed then with the oral LP although had no symptoms then just the last few years!!!! Have you ever had trouble with your smears...I think definitely there connected.

    • karen41728
      karen41728 MaryMostyn

      Posted

      Hi Mary

      Have you ever had a problem with abnormal cells after a cervical smear x

    • karen41728
      karen41728 MaryMostyn

      Posted

      Hi Mary 

      not sure if you read my messages ..... Just wondered whether you've ever had any problems in the past with abnormal cells after a cervical smear rest 

    • MaryMostyn
      MaryMostyn karen41728

      Posted

      Hi Karen

      sorry to take so long to reply I am away at the moment and the wifi useless in the hotel. In answer to your question, I have never had a problem with my smears.  Stress is definitely my worse trigger. Mary

    • karen41728
      karen41728 MaryMostyn

      Posted

      Thanks Mary for replying hope you had a lovely time... I had colposcopy years ago after an abnormal smear and just after this was diagnosed with lichen planus although had no symptoms at all then
  • ESCENTI
    ESCENTI Jeanie44

    Posted

    I have been on this forum for a while now people are giving false information ive had LS about 5 years now the only thing im using is Demovate as there is nothing at all that helps please be careful if your trying these things people are posting also i have had a message of some one who says she has a cure and you have to buy this from her in my experiance there is no cure.Escenti
    • Jeanie44
      Jeanie44 ESCENTI

      Posted

      Thank you so much for your reply. I am very wary about trying less orthodox 'cures' and can see how it would be very easy to be lured by false promises, just because sometimes we feel a little desperate.

      I've been struck by how many women are experiencing very similar symptoms to me and yet when I talk to my doctor I feel like I'm completely alone with this, and I can't really talk it over with friends or family. It just all feels too intimate.  (It's taken me a long time to have the courage to join this forum but it feels good to be sharing these things too). 

      Thank you.

    • Neldog
      Neldog ESCENTI

      Posted

      That's a bit sad if you  cnnot find anything that helps.   What have you tried apart from the Dermovate?

       

    • ESCENTI
      ESCENTI Neldog

      Posted

      Every steroid cream going nothing works now the Dermovate isnt doing much i recently had an operation Urethral Dilation as my urethra has closed and scared due to LS.
    • Neldog
      Neldog ESCENTI

      Posted

      Ok, just the steroid creams then....    They are not really designed to sort out the immune  system, only to help provide some relief.....    Has your doctor come up with anything else to try?     Have you researched anything like low dose naltrexone?     ( i cant get on with it though... Makes me dizzy)..    How about researching things like  the leaky gut conbection to auto immune stuff?   Have you cut out gluten and sugar?    Have you looked at gut microbiome?

      i'm only full of  ideas ref the auto immune aspect because i also have other auto immune problems as well as the ls.

      when you are really itchy have you tried the bicarbonate of soda,  a  half teaspoon full in an eggcup of warm water.....  Dab it on with a cotton wood pad......  Its cheap, the ingredients are in the kitchen and it gives me instant relif from itching.....

      i've looked on other forums and people are trying all sorts of ideas....  Nothing has to cost a fortune.....  But dont just accept your lot and give ip trying.

      the docs are not suceeding in making us all well, so we have to explore other possibilities.

      good luck!

      NMD.

       

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