Lichen sclerosis with no itching..

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Hi, I am new to this site and am desperately wondering if anyone has LS with no itching? I went to my GP early last year with a tiny cut and whilst examining me she casually announced I had a 'bit' of LS. I was given a fact sheet with a tube of Betamethasone valerate 0.1% cream. I have only used this occasionally and very sparingly on the white pearlised skin between my vagina and buttocks - I really don't know whether I should be using it more regularly. I still have no itching and only slightly sore around the vaginal entrance after sex. The white area does seem to have spread slightly to this area now though. Would regular use of this cream help with the white patches or would it be detrimental given that I barely have any symptoms? I'm so scared of doing the wrong thing and becoming obsessed with the magnifying mirror! Any advice would be welcome.

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  • Posted

    Hi, my advice would be do everything you can to manage it now. I had a normal sex life (I'm married with two grown up children) until 2009 when my LS started. I've not had intercourse with my husband since then. My LS was not diagnosed until 2011 by which time it had spread. I have recently had surgery and am hopeful that I might be able to have intercourse again. Don't take it too lightly - you can control it. The consultant who performed my surgery is the most informed doctor I've met - ive seen several consultants in the last few years. She told me that I had received the correct support initially it would not have progressed as it has - it could have been managed. I know you might think I am exaggerating but it had been a real battle for me to try and resolve this. Do everything you can to prevent it spreading. Best wishes and good luck,

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    • Posted

      Thanks for that Ashley Jo.. I have had barely any information at all from my GP about the future control of it. I have just booked to see her tomorrow and will ask for a referral to someone who knows more. I will start using the cream again today. What a horrible disease, it does scare me. After years of being in a bad marriage I am finally happy with someone else and now this to contend with! Hope you are well now.
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    • Posted

      Hi Ashley Jo can I ask whether your surgery was relating to LS please

      Kind regards

      Stephanie x

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    • Posted

      Hello Stephanie,   yes it was.  The skin had fused together.  The procedure was completed to try to create a 'normal' vaginal opening.   The LS caused the fusing of the skin.  This happened very quickly in the initial stages of the LS before it was diagnosed.   If you are thinking about surgery or requesting it let me know and I'll tell you what I did...because I actually approached my GP and requested help in this respect.   Kind regards, Ashley Jo x

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    • Posted

      Hi Jill, thanks for your message and yes, thanks, I am fine.  Good luck with the GP appointment.   The problem is that (I think) most GPs do not know very much about LS - it's not really their fault.    Don't be afraid to use the cream; the impact of not using it can be much worse.   Don't be scared either.    Try to learn as much as you can now.   When I was first diagnosed I couldn't believe it, I had never even heard of LS.    A lot can be done but you need to know..... the problem is that a lot of doctors don't know.   The consultant who has helped me recently (performed surgery with a plastic surgeon) has been fantastic.  I'm happy to give you more information if you want.    I feel that given where I have been I am now in a more positive position.   It will never go away but you can manage it.    Good luck tomorrow,   Ashley Jo

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    • Posted

      Thank you Ashley Jo this condition is such a challenge for everyone suffering with it. I am glad the surgery helped in your case. I am currently in a position where my perinium is split completely and I am trying to manage it. I have spoken with my LS consultant who is a Prof of vulval diseases and surgery is an option, but the last one !! I have had LS for 16 years and quite honestly I don't believe anyone really knows how why or when this condition reared its ugly little head on woman !!!

      My Prof who is quite candid said as there is no funding to research this disease the professionals learn from us who are quietly

      trying to get control of their LS by using standard steroid ointment and trial and error alternative creams 'allegedly' for LS.

      It is all a bit of a downer to say the least.

      I wish you good results Ashley Jo

      Kind regards

      Stephanie x

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    • Posted

      Hi Stephanie,  Many thanks for your message.   It's very difficult to live with and quite distressing.  I| hope there is a solution for you.   If surgery helps don't be afraid.   It will make you feel so much better!   The more messages we can spread and share then perhaps we can help each other.   Over the years I have found my own GP very supportive - but really unsure about what to do.   Some gynaecologists I have seen have not been good/helpful - the first one even suggested that I had psychological problems, he never did a biopsy.   I have also seen a dermatologist.   It's only recently that I have met two really great consultants (gynaecologist and plastic surgeon) who work together - great partnership.  The day I had surgery there was at least one other woman having surgery - the same procedure.

      Thanks for your good wishes.  I am feeling very optimistic at the moment.   I know it's not cured but I do have lots of hope.  The difference since surgery is incredible.    I hope you find a good solution - please don't worry if you choose the surgery option, I'm sure it will be fine.   Best wishes Stephanie from Ashley Jo xxx

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  • Posted

    I have never had much itching ever either, I dont even have white patches much. I just have red inflamed skin with bumps and cuts that flair up but I was diagnosed with LS by biopsy after a year of going to Gynos with no answer. 

    Im trying my best to keep up with it. I cant let up a day or it gets painful. So dont let it go untreated. It will progress.

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    • Posted

      Ok thank you Charlotte I will definitely seek further help and start again with the cream today. Good wishes for the future.
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    • Posted

      I would put some on.  The clob is used reversed it back to pink.  Hopefully yours will too if you are just in the beginning stage.  I too don't have itching but have atrophy due to menopause.  I use yes moisturiser now which seems to help.  I have the erythema and soreness too,

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    • Posted

      Hi, i havent been diagnosed with  LS waiting to see the consultant the end of may, who prevously said she would do a biopsy when i next see her., my symptoms are the same as yours, i don,t get any itching ,it looks red and inflamed and feel sore, its not like it all the while i have grazes too, and sometimes white discharge. ive also tried hydromol ointment  the consultant perscibed but it irritates it as others have done.
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    • Posted

      Thank you Charlotte- any info is helpful to me and in fact all of us. I will let you know what my gp says after tomorrow. X
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    • Posted

      Hi Sue - what is atrophy? Is that where the white patches are? Mine has only started since I've gone into the menopause too. Along with a rectocele .. oh the joys!

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    • Posted

      Hi, try baths with a few drops of lavender oil to sooth.   Also, if you can ask to have Epiderm ointment prescribed (as well as steroids) this helps.  Also ask about having a  special shower gel - don't use 'normal' soaps and shower gels - use the Epiderm one.  I didn't do this until recently when my current gynaecologist told me - none of the previous ones have given me as much support.   Good luck, Ashley Jo

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    • Posted

      mine is exactly the same as yours, , im just getting over a bout of it, went to gp yesterday she gave me canesteen cream, explained my problem with pharmicist who told me not to use the canesteen while the cuts are there, seeing my gyno the 25th may to see about having a biopsy, to find out whats going on, will let her know what ive read about LS, as i have the same symptons, the last time i saw her she me hydromol which didnt seem to ease it at all, once since this have completly calmed down i will try to start using it again, there is no instuction as to how many times a day you put it on, when i asked the doctor he said put it on when required. take care.
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    • Posted

      sorry meant to say the pharmicist told me to put sudocream on it, she was also very knowlegable about  LS.
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