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Lichen sclerosis any advice?

Posted , 27 users are following.

Scottielover
Scottielover

Hi I'm 46 and have been diagnosed with LS for approx 8 months. Can't seem to get it under control and despite using hydro mol, and both steroid creams I find I am now in a worse state than I have been for sometime. In tears every time I go to the loo from pain both front and back. Can't use the steroids as I now have raw sking and it stings. Been recently on antibiotics and wondering wether this has had a worse effect although reading about this does not seem to cause a problem. I have scarring and the piece of sking between both areas in now extremely sensitive. Been to see doc and dermatologist but never seems to co inside with a bad outbreak. Haven't had sex for months now which is also depressing as worried about husbands need a even though he is very supportive. Just can't seem to speak to anyone who understands. I've also got vitiligo apparently this can be linked or is seen to be linked to LS as an immuno problem but nothing else. Can anyone help with any suggestions for relief?

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  • Kubie
    Kubie Scottielover

    Posted

    YES...Amitriptaline (lowest dosage of 25mg which is what I have and then cut in half)  It is strong...and will make you very relaxed...so it is best to take at night during bad flare ups. Take the smallest dosage first. If you don't feel anything within 2 hours..take the other half.  It almost removes all pain and itching for about 18 hours which is great because if you are still having pain you can can take another before bed. I had to go to a dermatologist and ask her to look even though gynecologists are supposed to know about this..and have been to a few....but I am wondering if dermatologists have a better ideas about this type of skin disease. I got something called Protopic which was her first instinct....she was right....and it started working and making the skin more supple and fuller within a week!!! After using it each day I only needed to use it once a week.  It lasted for a good year and then I had a flare up. I use the Amitriptaline to help when I have flare ups only...or take it as need..... and then take a break from the protopic.

    I hope this helps.

  • joyce17858
    joyce17858 Scottielover

    Posted

    Hi, I stumbled across your post tonight.

    I too have the same problem as you, my perenium is splitting and I am very concerned that it won't stop tearing,I never had any problems with my perenium area until I started with LS, I mentioned to my gynaecologist that there have been huge changes to that area, however he seemed to quickly dismiss this and put it down to childbirth, which was 21 years ago, I can't help but feel there isn't much help for us LS sufferers out there, I do use the dermovate cream too and also my gynaecologist prescribed nerisone forte too which he advised me to use sparingly. My biggest concern is the splitting and corroding of my skin in that area, I'm worried it won't stop. Also has anyone else suffered with thinning hair? Looking for a bit of advice there, should I ask my gp for a thyroid test? sad 

    • Chrisy
      Chrisy joyce17858

      Posted

      Hi, read your post and had to add for your info. Although I am a mother I had my daughter by cesarean. I still tear on my perineum and have always torn since my 20s. Sex being the main culprit but I also tore during menstrual times. Dampness is most likely the cause for ls activating. I therefore think it has nothing to do with childbirth. I also suffer with thinning hair but have always thought it was caused by the statins I am taking for high cholesterol. I would get my thyroid checked out if I were you. I did but they said it was normal in my case.
  • christine89870
    christine89870 Scottielover

    Posted

    Dear Scottielover,

    I have a few ideas for you. It is important that you use a strong OINTMENT-based corticosteroid. Do not use a cortisone cream because they contain preservatives that can sting and hurt. Also there is data to show that the use of an estrogen ointment may be of benefit. The vitiligo is secondary to the LS. There are some dermatologists who feel that testosterone ointment works also, but there is a growing consensus that estrogen depletion in the tissue is contributing to the LS, so that is why they are now recommending the estrogen ointment or estrogen in patch or pellet form (applied or inserted elsewhere to cause systemic absorption). Use plain Vaseline for comfort or silicone-based lubricants (very helpful). Allow two hours for the cortisone ointment to work before using the silicone ointment. Try using a gentle wipe like Tucks pads to clean the area. 

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