Lichen sclerosus — Scope | Disability forum
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Lichen sclerosus

suz7895
suz7895 Member Posts: 2 Listener
Hi, I have been diagnosed with Lichen sclerosus for the last 3 years and have now been told that there is fusion of the skin. My next appointment will consist of Gynae, Derm and Surgeon.. Has anybody else had this happen? I'm 43 

Comments

  • janer1967
    janer1967 Member Posts: 16,336 Disability Gamechanger
    Hi and welcome 

    It's not something I have heard of sorry 

    Hopefully other members may have some knowledge 

    Just wanted to say hi 
  • suz7895
    suz7895 Member Posts: 2 Listener
    Hi Janer
    It seems not a lot of people have heard of it but just great full for you to acknowledge and say hello x
  • janer1967
    janer1967 Member Posts: 16,336 Disability Gamechanger
    Maybe your gp and consultant can explain more 

    Have a good think about everything you want to ask f8r your next appointment and write it down 

    You may find some info on nhs website I'm not one for advising to look online but nhs is quite a good site 
  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
    edited March 2021
    Hi @suz7895 :)

    Welcome to the community!

    I just wanted to drop by, say hello and offer you some support with your query. 

    I've heard of lichen sclerosus, but I don't know a lot about it, I'm afraid. I think you're right - there's not a great deal of awareness. Hopefully, they will be able to tell you a bit more at your next hospital appointment. When will you be going to see your specialists?

    Also, you might want to check out the NHS website on lichen sclerosus at 
    https://www.nhs.uk/conditions/lichen-sclerosus/

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  • vonny
    vonny Member Posts: 5 Listener
    suz7895 said:
    Hi, I have been diagnosed with Lichen sclerosus for the last 3 years and have now been told that there is fusion of the skin. My next appointment will consist of Gynae, Derm and Surgeon.. Has anybody else had this happen? I'm 43 

  • vonny
    vonny Member Posts: 5 Listener
    I was diagnosed with lichen sclerosis yesterday. I'm devastated and from what I've read so far this could be a life long condition.  How do others cope and what is the best relief? I've got the steroid cream and a cream for cleaning the area but I'm so sore and so down with this. Any advice would be appreciated 😥
  • Tori_Scope
    Tori_Scope Posts: 9,540 Scope online community team
    Welcome to the community @vonny :) I'm sorry to hear that your new diagnosis has made you feel a bit down. This is quite normal, but you've come to the right place to access some friendly advice and support.

    Along with using steroid cream, the NHS website suggests people with lichen sclerosus should:
    • wash with an emollient soap substitute instead of regular soap – ask a doctor or pharmacist about suitable products
    • gently dab your genitals dry after peeing
    • regularly apply a barrier cream or ointment, such as petroleum jelly, to affected areas
    • wear cotton or silk underwear
    • use vaginal lubricant if sex is uncomfortable
    Has your GP been supportive? I'd encourage you to speak to them if you don't feel as though the treatment you're on is working as well as it could, or if you're feeling down about it. I imagine you might need to give it some time before you see some changes, but hopefully the creams you've been given will help to ease the symptoms. 
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  • vonny
    vonny Member Posts: 5 Listener
    I attended the nurse for the past 6 weeks with all sorts of creams and urine tests , swabs. All came back clear . I more or less had to beg my surgery for an appointment with our only female GP. She knew in an instant what it was. I've got the steroid cream and a wash but I wasn't sure if I could still use a barrier cream. So thank you so much for the information.  You have really helped. My GP is having me back in 6 weeks to check on things. It's just the diet etc that I'll have to follow that's also going to be hard, but I'll do anything to stop this pain. Thank you again
  • Tori_Scope
    Tori_Scope Posts: 9,540 Scope online community team
    It sounds as though you and your doctor have got a bit of a plan @vonny, which is great :) Fingers crossed things will have improved in 6 weeks time. 

    I'd encourage you to check with your GP or pharmacist about what other creams and such you can use in conjunction with what you've been prescribed, just in case. 
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  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,720 Disability Gamechanger
    We have a friend and neighbour who has this and from what she has said it doesn't give her too many problems but I understand that once you have it you always have it, but I'm no doctor.
    Be extra nice to new members.
  • vonny
    vonny Member Posts: 5 Listener
    Yes I m going to give my pharmacy a call tomorrow.  No there is no cure for it just treatment.  Since yesterday I've read all the leaflets my GP gave me then some more online.  I'm not saying it will be like this all the time and if it does clear up enough for me to live a normal life then great but at present it's agony.  I dread having to go to the loo. I've also read about certain foods to avoid potatoes, spinach, carrots plus more of the food I love. This I'll cope with to avoid any future flare ups.  Then there is the worry of vanular cancer which is also associated with this.  I do believe my GP will not miss anything and if she decides on biopsy like we spoke of yesterday well that's something else I'll have to deal with. I'm just a bit worried and want to speak with people like yourselves or someone else who may suffer from this . Thanks so much for replying 🙂
  • Alex_Scope
    Alex_Scope Posts: 3,695 Scope online community team
    Hello and welcome @vonny I'm glad to read that you find the community a helpful and supportive place to ask questions.

    Have you been able to speak to your pharmacy yet today? :)
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  • vonny
    vonny Member Posts: 5 Listener
    Hi Alex. Yes I spoke to them earlier.  Told me to apply a barrier cream when needed but not at the  same time as the steroid cream. Fingers crossed this eases the discomfort. Thank you for your concern. It has helped me so much in the past 24hours 🙂
  • Alex_Scope
    Alex_Scope Posts: 3,695 Scope online community team
    That's alright @vonny I'm glad you've been able to get something else to hopefully ease things as you say :)

    Fingers crossed!
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