Here are two of the detailed sets of information on LS elsewhere on this site. In case you are not aware, the most frequent sufferers of LS are Women (even young girls can suffer from it!) therefore the dedicated Forum on here is "Women’s Health / Lichen Sclerosus " - the links I provide below will take you to the Links to the Forum Discussions at the Top of each specified page. So here are my responses: -
1.) https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
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the first one you may find is quite academic in wording, but it is the most comprehensive research based detail I have yet to see, and it contains a great deal of practical things to put in place, including Vitamin and Mineral Supplement regime to put in place. The author is Nancy KB and you can contact her direct for further advice by clicking on the envelope icon below her name on the relevant page. Nancy is my LS Guru and I have yet to find a more knowledgeable sufferer of the condition.
The second link was posted as a reply on someone else’s Forum Post, so you may need to scroll down the page until you find the response by Starlight8 - it is written from a very practical perspective, with do’s not mentioned elsewhere.
The essential, other than the vitamin / mineral supplements, other than what I have eluded to above is that LS infected skin must be gently stretched to keep it as supple and healthy as possible. I do my stretches when apply the Clobetasol and use gentle massage motions while gently stretching the skin at the same time. The best Clobetasol most LS sufferers prefer is Dermovate in the Ointment rather than the Cream version.
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2.) Most large supermarkets have their own brand of Liquid Soap Flakes - I think the ones I have used so far are Morrisons with the current one being the Tesco one. The advantage of this is that you can use it in a normal washing machine in the normal manner. The thing I forgot to mention (and Yes, there are lots of do’s and don’t s !!!) is never use Fabric Conditioner or other such additives as this can undo the who point of using Liquid Soaps Flakes; i.e. excluding exposure to potential harmful chemicals!
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3.) A Biopsy is the ONLY way to establish the presence or absence of LS, otherwise you are only ever dealing with “Suspected LS” !
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4.) To have a discussion you need NHS Specialist’s who are prepared to have a discussion with their Patients’ - to date I have not found such a Specialist! Let me know your (husband’s) experience on this - particularly if he has had a Private Sector consultation on this.
I also have Chronic Fatigue Syndrome as part of the Autoimmune ‘package’ that I experience - certainly no Medical professional is prepared to offer any advice, let alone suggest treatment for CFS - you are left on your own to ‘get on with it’!
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5.) Yes, I do quite literally mean anything! This is why I am emphasising getting the Steroid Regime correct - once this in place you can try water based Lubes that are specifically for “Sensitive” or hypo-allergic skin types. Other than this, things like Aloe Vera Gel are good - but can feel a little dry on the skin for sexual purposes.
The problem you will find is that each LS circumstances are unique - therefore something that one person finds useful can be positively dangerous for someone else. Again, this is why I say have a basis to build from - because if you introduce something that causes a severe reaction you have to start the whole process of going back to using the Steroid only - and the potential of needing not to have sex for an extended period of weeks or even several months!!!
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6.) I am only taking Zinc and Vitamin D3 at the moment - I do need to step-up what I am taking as really I have noticed very little, if any difference. A practical LS users guide that list all of the proportions for each Vitamin and Mineral Supplement would be very helpful to me!!!
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Let me know how the two of you are getting on with your progression on this- any other questions or comments once you start to try different things, particularly what has worked well - you know where I am …