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Lichen sclerosus

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suz7895
suz7895 Community member Posts: 3 Connected
in Start here and say hello!
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 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome 

    It's not something I have heard of sorry 

    Hopefully other members may have some knowledge 

    Just wanted to say hi 
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  • suz7895
    suz7895 Community member Posts: 3 Connected
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    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
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    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 
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  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
    edited March 2021
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    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/

     @Caz_Scope
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  • vonny
    vonny Community member Posts: 5 Listener
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    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 

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  • vonny
    vonny Community member Posts: 5 Listener
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    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 😥
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    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 Community member Posts: 5 Listener
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    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
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    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 Community member Posts: 11,621 Disability Gamechanger
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    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.
    2024 The year of the general election...the time for change is coming 💡

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  • vonny
    vonny Community member Posts: 5 Listener
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    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 🙂
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    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 Community member Posts: 5 Listener
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    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 🙂
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    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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  • OutOfTheWorld99
    OutOfTheWorld99 Community member Posts: 36 Courageous
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    Suffered with LS for 5 years and diet has had no baring on the condition negatively, or positively in my particular case. However riding a bike, repeatedly getting up and down, climbing a ladder, or sitting down for prolonged periods of time leads to inflammation.
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  • JPX
    JPX Community member Posts: 4 Listener
    edited May 2023
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    OutOfTheWorld99 said:
    Suffered with LS for 5 years and diet has had no baring on the condition negatively, or positively in my particular case. However riding a bike, repeatedly getting up and down, climbing a ladder, or sitting down for prolonged periods of time leads to inflammation.
    Hi. I am very new here and am in the early stages on Male Lichen Scerosus. I can go 2 days ok, 2 days bad. Whenever it’s ok I force myself to walk as I don’t know if I can the next day. I’m told to keep applying moisturiser but the more I apply, I know the pain is coming because I’m touching it more. Interested to know your take on this? 
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  • JPX
    JPX Community member Posts: 4 Listener
    edited May 2023
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    Purrrrrrr said:
    JPX said:
    OutOfTheWorld99 said:
    Suffered with LS for 5 years and diet has had no baring on the condition negatively, or positively in my particular case. However riding a bike, repeatedly getting up and down, climbing a ladder, or sitting down for prolonged periods of time leads to inflammation.
    Hi. I am very new here and am in the early stages on Male Lichen Scerosus. I can go 2 days ok, 2 days bad. Whenever it’s ok I force myself to walk as I don’t know if I can the next day. I’m told to keep applying moisturiser but the more I apply, I know the pain is coming because I’m touching it more. Interested to know your take on this? 
    Hi welcome to the forum.  I have had this for many years.  for most of those years, I didn't know what it was and it would flair and go flair and go, the going coinciding with whatever change I had made.  Changed toilet roll, changed watching powder changed the type of knickers or sanitary wear.  I always thought it was a coincidence.  it was only in later years that the flairs never stopped.   Luckily mine does respond to diet.  I only eat very low-carb, no sugar or grains if I don't not only does the LS flair but also my IBS  so you can imagine how sore everything gets.

      I have a bidet toilet seat that stopped the need for any wiping of that area during a flair 

    I also have Lichen in other areas now, including nails, mouth and areas of my skin. but because these things are rare Drs don't join the dots, so keep your eyes open for more signs of autoimmune diseases.  I also have another rare one called Scleridema that is connected.  

    Has your GP not given you a steroid cream?    I use clobetasol ointment and it helps with a flair.  I also use an alt treatment  I'm not sure if we are allowed to talk about alt treatments here.     I now only use the steroid ointment in an intense flair so that's never these days.  No one wants to be using that for years and years. but to get yourself into a manageable state you need it at first 

    There are groups on Facebook that might be worth joining let me do a search to see if there is one for men. 

      I can only find one and it's not very active but they may have some good posts and files for you to read  Maybe you could start a group? 

    https://www.facebook.com/groups/766993347058037

    About diet

    https://www.facebook.com/groups/HealingthroughNourishment



    There will be many videos on youtube.  

    This is an interesting one 

    https://youtu.be/hakElFgAIrk  

    Also 

    https://youtu.be/jjv0Fr6Nvqs



    I know you say "early stages"   but that doesn't mean it will get worse.   I seemed to have had it most of my adult life but was not aware. I was diagnosed with many autoimmune diseases at the same time and they got worse for a while but now I have it and them under control.  But only if I keep away from the dreaded grains and sugar.   I always feel I have it beat and then eat something I know I shouldn't and it comes back.  


    Get armed with info and go to your GP and get the correct treatment, moisturiser is not the correct treatment.  watch as many videos as you can and look for alt ways of helping yourself.  






    Hi. Thank you for your reply. Yes it’s very rare in males and everything I do seems to aggravate it. I’ve hated sleeping all my life and now the only think I’m looking forward to is laying down. Not good for a PT like me. I’m currently off work, waiting for next steps.

    I had Lichen Planus about 15 years ago which cleared with a scar but now my new dermatologist thinks maybe it was alway LS and now it’s been triggered. I’m 39 by the way. 

    I used to be really fit and ate well but that’s kind of changed since I had my 2nd child. Maybe that’s something but maybe not. I’m less active than I used to be but not inactive. I walk, jog, play sport with the kids but now I feel bed bound.

    I’m not on the steroid cream yet but I know it’s coming. Dermatologist is keen on circumcision too which I know is best.

    I just can’t imagine the pain ever going. When you say flair, how often is this and for how long. I’ve been struggling for 5 months now, obviously 4 months of which they treated me for mate thrush, balanitis, then usual. It kind of helped for 1 week at a time but always killed after that.  
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  • JPX
    JPX Community member Posts: 4 Listener
    edited May 2023
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    Purrrrrrr said:
    JPX said:
    OutOfTheWorld99 said:
    Suffered with LS for 5 years and diet has had no baring on the condition negatively, or positively in my particular case. However riding a bike, repeatedly getting up and down, climbing a ladder, or sitting down for prolonged periods of time leads to inflammation.
    Hi. I am very new here and am in the early stages on Male Lichen Scerosus. I can go 2 days ok, 2 days bad. Whenever it’s ok I force myself to walk as I don’t know if I can the next day. I’m told to keep applying moisturiser but the more I apply, I know the pain is coming because I’m touching it more. Interested to know your take on this? 
    Hi welcome to the forum.  I have had this for many years.  for most of those years, I didn't know what it was and it would flair and go flair and go, the going coinciding with whatever change I had made.  Changed toilet roll, changed watching powder changed the type of knickers or sanitary wear.  I always thought it was a coincidence.  it was only in later years that the flairs never stopped.   Luckily mine does respond to diet.  I only eat very low-carb, no sugar or grains if I don't not only does the LS flair but also my IBS  so you can imagine how sore everything gets.

      I have a bidet toilet seat that stopped the need for any wiping of that area during a flair 

    I also have Lichen in other areas now, including nails, mouth and areas of my skin. but because these things are rare Drs don't join the dots, so keep your eyes open for more signs of autoimmune diseases.  I also have another rare one called Scleridema that is connected.  

    Has your GP not given you a steroid cream?    I use clobetasol ointment and it helps with a flair.  I also use an alt treatment  I'm not sure if we are allowed to talk about alt treatments here.     I now only use the steroid ointment in an intense flair so that's never these days.  No one wants to be using that for years and years. but to get yourself into a manageable state you need it at first 

    There are groups on Facebook that might be worth joining let me do a search to see if there is one for men. 

      I can only find one and it's not very active but they may have some good posts and files for you to read  Maybe you could start a group? 

    https://www.facebook.com/groups/766993347058037

    About diet

    https://www.facebook.com/groups/HealingthroughNourishment



    There will be many videos on youtube.  

    This is an interesting one 

    https://youtu.be/hakElFgAIrk  

    Also 

    https://youtu.be/jjv0Fr6Nvqs



    I know you say "early stages"   but that doesn't mean it will get worse.   I seemed to have had it most of my adult life but was not aware. I was diagnosed with many autoimmune diseases at the same time and they got worse for a while but now I have it and them under control.  But only if I keep away from the dreaded grains and sugar.   I always feel I have it beat and then eat something I know I shouldn't and it comes back.  


    Get armed with info and go to your GP and get the correct treatment, moisturiser is not the correct treatment.  watch as many videos as you can and look for alt ways of helping yourself.  






    Hi. Thank for your reply. Yes male LS is very rare and not many talk about it. Online it’s only the worse cases so it’s hard to judge what the future will be. I’m 39 by the way.

    I had Lichen Planus 15 years ago which cleared with a scar. I’ve now had pain for 5 months which has resulted in all the usual tests, treatment for thrush, balanitis etc and now the new dermatologist says it’s LS which may or may not have always been there but it’s now triggered and red raw!

    I used to hate sleeping but now I can’t wait for bed. I’m off work sick as I’m a PT and can’t imagine the pain ever going.

    I used to eat great and was very active. Not so much now since my 2nd child so maybe that’s a factor? Maybe not. Who knows.

    It can wipe me out for day at the moment. I know steroids are coming but the dermatologist wanted to make sure. They also recommend circumcision which is really daunting as I can’t seem to imagine it doing anything to help.

    I currently have no idea how to get out of this rut. It like a complete reversal of my day.
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  • JPX
    JPX Community member Posts: 4 Listener
    edited May 2023
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    Purrrrrrr said:
    Here is a more active group. 


    https://www.facebook.com/groups/1749723285252765/?ref=share
    Firstly, apologies for posting twice (the first post didn’t show up and I got confused). Secondly, sorry for what looks like me taking over this thread.

    I think it’s just because I noticed a male commenting on LS and that’s like gold dust atm. 

    Diet wise, I can sort that if I just work out what I need to do. I understand it’s really hit and miss though.

    what gets me is not being able to do the things I used to do. Gym, run, swim, sports. I know these are ok in moderation but currently the pain is bed bounding after I walk for a day. I’m a personal trainer by trade so this is a huge lifestyle change. Motivation is lacking right now. I have follow up dermatologist appointment and I really hoping the steroid ointment kicks in within a week, just so I can get back working.

    thanks for the advice. Defo will look at these sites. I’ve done a lot of LS goggling in the last month and it’s really scary out there. Is love to just speak to someone like me and really be a perspective of life. It’s hard hitting as most will probably relate too.

    thanks again. 


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  • OutOfTheWorld99
    OutOfTheWorld99 Community member Posts: 36 Courageous
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    Sorry I am so late seeing this but yes being male and suffering with LS long term can be a nightmare.And as an earlier poster said GP's have a lack of understanding in particular one i consulted a few years ago thought it was perfectly ok to be laying carpets.I said, well, if you were actually the patient you'd appreciate how stupid you sound knowing that the penis glans head holds 4.000 nerve endings. There is a lack of understanding with this disease as well as how in particularly male patients' are affected mentally. I mention nerves in glan head as i tried to explain to a GP, while I was laying a carpet,loose skin had got attached between the Meatus hole and my underwear = severe pain. Glad to see other men here now.
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