BXO / LS for more than 1.5 years

I hope to get feedback or help, from someone else struggling with the same problem as I am getting real desperate 😦

1.5 year ago (Nov 2019), I started to have pain and irritation on the glans while at the same time appeared some white patches. Around the patches eventually after having sex or masturbation would blister (not bleeding but would leave a mark that could take a week to heal).

After visiting lots of derms and urologits, which said "it was nothing" , I got eventually diagnosed (clinical) with Lichen Sclerosus (no biopsy taken) in April 2020. It seems that it also affected all the nails as they got very thin and brittle, and the skin around the anus, as it gets very irritated while doing sports.

I got prescribed only with Clobetasol ointment for the penis glans. 2x day for 1 month, 1x day for 1 month, 3x week for 1 month, 2x week for 3 months, and 1x week for 6 months. While in the last 6 months, I was applying daily A+D ointment.

While in the first month of clobetasol treatment, I had not any type of sexual activity.

The glans appeareance improved a little bit somehow, but after having sex or masturbation, white patches show up again and irritation which eventually fades after some hours.

I got now prescribed with Protopic 0,1% ointment, for 3 weeks. I am almost at the end of the third week and I am not seeing any improvement.

Any doctor here would recommend what could be next steps? Would circumcision help further or resolve the problem? Is a biopsy recommended in any case after such a long course of clobetasol?

Is there any 2nd line treatment for systemic LS as it is affecting as well nails and skin around anus? I´ve asked this to my derm and he said that there is no effective systemic treatment for LS, which is very discouraging.

At the I'm afraid it could be related to another problem not related to LS and something else more serious.

I attach two pics of my glans. One before having sex, which looks almost "normal" and second picture after sex where the white patches and irritation arises.

Many thanks for your help!

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