I am now a proud owner of LS

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After massive pain  for several months  my GP sent me to a dermatologist and now  I have been diagnosed with LS.  

Extremely painful.  Within weeks it has spread to the crease of my legs.  

I am on colebostal but have been instructed to only use when I have a flare up.  Well it has been since  August of last year and I feel the flare up has not gone away.  

I have been reading this forum so I bought EMU oil and have just started that.  

I have virtiligo on my legs and when I saw the white patches growing on my genitals I just assumed it was my virtiligo spreading.  

I realize this will never go away.  

My questions is this:   The ointment and Vaseline stains all of my panties and bedding.  

I try to go pantiless as much as possible because it is mostly on the crease of my legs and my anus.  

Any recommendations please help. 

I would also like to add:   No one has ever heard of this condition.  They thought at the beginning I had vaginal sceriosis.  

I  now have 4 autoimmune diseases and I am only 50.  

Rheumatoid arthritis

Virtiligo

Sceriosos

Linchen Sclerosis.  

Is this all part of the same family?   I am trying to find a correlation.   

Any advice or tips I would be eternally grateful.  

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9 Replies

  • Posted

    Sorry, Alex, so you’re having almost the same challenge as I am.  I have vitiligo but on my hands and arms only... and have arthritis as well. I believe there is a corrolation as I have read that. Hang in there, and hopefully we will get some help here. I just stopped using the clobetasol as it thinned my anal area and now am very tender (raw). I have begun to use NEEM oil but worried I will continue to get Uti’s.  Prayers and a positive attitude have helped me. 
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  • Posted

    Just to make the point that LS is a skin thickening condition and the clob helps prevent fusing. I actually now use Eumovate a weaker steroid for daily use.

    Have you watched Professor Goldsteins lecture? The link is on the Patient site. Good luck.

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    • Posted

      Hi Alex ... , fusing is where what should be 2 separate areas / pieces of skin fuse-together and form one.  So, with LS in males, the foreskin and the glans fuse together, and with females, many ladies on here describe this as the labia seemingly disappearing as it fuses with the surrounding vulval skin.  Similarly, the clitoris and clitoral hood can become fused with LS advancing.  I would suggest you become visually aware of your entire vulval area, and be vigilant for any signs of change.

      *In terms of your use of Clobetasol - as I use this regularly too for my LS, you must ensure you thoroughly apply it to gain any benefit from it.  I mainly use it on a daily basis on the area that is most infected, only.  I spend 2-3 minutes applying it, then a further 2 - 5 minutes massaging it in.  As your flare up does note seem to be subsiding, I would also start to go through what you eat regularly, are there processed foods, sugars that you can eliminate, for example?  One recommendation I have seen often on here is to go gluten free.

      I can highly recommend you regularly follow the discussions on here as there any many tips of what you can do to alleviate LS itself, and dietary considerations to prevent flaring and spreading of the condition.

      Good Luck - W.D.

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  • Posted

    Hi Alex, I think once you get one autoimmune disorder it can open the doors to others..I have Ulcerative Colitis, Lichen Sclerosus, Oral Lichen Planus, Spondyloarthritis,and I was recently diagnosed with Lupus. 

    With regard to your continuing symptoms, my suggestion would be to try going gluten free, a couple of months should give you an idea if it is working for you, if you are feeling some relief, because for some women this is like BINGO!!  All the while you must cut out excessive sugar as everyone pretty must agrees that sugar is the worst thing for LS flare ups.  If you see no relief from going gluten free you should then try cutting out all dairy products. 

     

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  • Posted

    Collector of auto immune diseases I am too.  My maintenance regime is:  diet (gluten free, added sugar free, no alcohol, no caffeine, limited dairy)  I sit in baking soda or borax baths, rinse with same after bathroom visits and moisturize with coconut oil.  Take hormone replacement.  Do regular dilation.

    This whole package makes for good maintenance of all.  The LS stays nicely under control.  

     

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