Feeling there is more hope

Posted , 9 users are following.

I have been to see dermatologist today and have come away feeling quite reassured. My present condition is 'healthy' despite some atrophy and fusion, so according to the dermatologist, my regime is working. Her advice being (as we all know) keep up the steroid whenever you have flare up or feel there is more fusing (as in my case) or irritation, thickening, raised red areas etc, but lessen it when things seem quiet. At the moment I am using it twice a week. If using it does not improve things, see the doctor again.

My main question was "is deterioration inevitable, given that this is an incurable disease" i.e: will we all have to eventually accept loss of architecture, sensation and then eventual closing up entirely? Her reply was no, in many cases LS can be 'halted' by steroid application and that, coupled with careful management, can keep further major problems at bay.

I feel I have been given a pat on the back for my maintenance of the condition and that there is hope that it may not get any worse. She was also very helpful in giving me telephone numbers to call should I suddenly worry about a change.

Ladies, with all the support on here as well as kindly doctors like this one, perhaps we can live with this?

5 likes, 9 replies

9 Replies

  • Posted

    Great news I'm sure for you! Sounds like you have a very encouraging and sympathetic dermatologist.

    I haven't seen one yet, only gyns. Maybe that is what I need to do.

    Conitnued good well being to you.

  • Posted

    Hi!

    That's wonderful news! I have also had doctors tell me that the deterioration is not inevitable if treated properly! I hope I can figure out a system that works for me once I have a clear diagnosis (i have no visible signs, just itching).

    Glad you're feeling better and in remission!

  • Posted

    So glad the Dermatologist was helpful....and great atta girls!!!!!! I just know you feel better!!!!

  • Posted

    So pleased you've had a good day - thanks for sharing your news - X

  • Posted

    Sarb, that's good news! Glad to hear that. I don't think closing up is inevitable. In most cases, from what I've read, this, like other AI diseases, flares and ebbs. If we can find a trigger, then maybe we can keep the flares down, at least that's my hope. We have to be vigilant, I know that. Complacency is an enemy.

    best, biscuit

    • Posted

      Eggbiscuit - I totally agree that complacency is the enemy. Keeping to routines that work for you are essential and I have no doubt that I will flare again in time. Also one thing derm said was regular self examination is important as that is the only way to detect changes early - obvious of course.

  • Posted

    sarb, so happy for you, i am seeing my Dr. tomorrow , hope she tells me the same good news, i will keep you posted...

  • Posted

    sarb, so happy for you, i am seeing my Dr. tomorrow , hope she tells me the same good news, i will keep you posted...

  • Posted

    Hi can anyone help me as i have given up hope, The hospital discharged me back to my Doctor he said my condition had stabalised i have had lichen sclerosus about 3 years i have to put the strongest steroid cream on morning and night i have lots of fusing no cliterus i have had 2 operations to

    dialate my ureatha as it closes up and i cant wee which makes me very ill, i am now on water tablets i dont no if i can have sex as i have no partner he passed away 16 years ago i am constantly sore i cant masterbate i give up on the idea of another man who would want me in this condition.

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