Are only areas that are white, itchy, etc. "active"? Or is it the vulva as a whole?

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I'm wondering if you have visible signs (i.e.: white patches) or symptoms (itching) in a particular and are treating those areas, do you have to be concerned about fusing, atrophy, etc. in other areas of the vulva? I realize if the LS develops there as well, but if there are no indications of it in that area, is it something to be concerned about?

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  • Posted

    wow, that was not very coherent of me. Lol. Was trying to ask, if you are treating specific areas, do you need to be concerned about fusing/atrophy in areas where there are no signs/symptoms of LS? Or is it something that can happen even in the areas with no clinical signs or symptoms?
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  • Posted

    Fusing can occur even when the area does not appear to have any visible signs (white patches) and so I think that fusing is possibly the most insidious, distressing symptom of Lichen Schlerosus.  

    I have some fusion, although not much, but it occurred last year, due to my lack of knowledge and care at the time, everything looked fine, and I felt fine, and therefore one has to be on their mettle always.  I never forget to spray, dry, and lubricate after using the bathroom, and more so before retiring in the evening!!  

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    • Posted

      Thank you! May I ask where the fusion is? Do you lubricate before bed or use rx stuff? This disease CAN be so insidious, which is both frustrating and frightening!
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    • Posted

      The right hand side of my labia minora morphed into my labia majora, and then fused. I still have some inner skin folds there, they have not all gone, it is just that that side is now shorter than the right hand side.  I have not had any problems since then, but I am vigilant, and I believe that if you can keep yourself meticulously clean down there, spray after urinating, dry, and then apply the lubrication of your choice, hopefully things should be good.  

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  • Posted

    I haven't had any obvious symptoms in the area forward of my perineum since I had the abscess over my clitoris two years ago. But I always apply the ointment over the whole front anyway. I think the skin over my clitoris has become better quality, more supple over time and I can 'feel' through it now. If the skin along the folds between the labia gets raw, there can be a series of little fissures making the whole area 'sticky' and prone to fusing together. I had that at the same time as the abess.

    Another confusing thing about where to apply came up after my gynae said something about the area at the back. For a whole six months between checkups I was applying a few inches up the butt crack. Then at the next appointment she pointed out the small wrinkly area close to the anus – that the skin was still a bit whitish. That completely changed where I was applying it! My recent experience breaking a fold in my fourchette also shows how vigilant we have to be. I must have had a pretty big tear after sex and when it healed, it pulled the skin together at a small point, easily parted last week and healing open nicely now.

    The main thing is look with that magnifying shaving mirror every night. I do and I still missed that fold!

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    • Posted

      Thank you, Morrell! I will be looking every night! I'm glad your gynae was able to point out the whitish area near the anus to you! I can see how it would go missed. It's like we're doing acrobatics every time we try to get a close enough look at all the areas. lol.

      Should one apply clob (I will talk to my doc about Protopic) along the folds between the inner and outer labia to prevent fusing due to potentailly unnoticed fissures? Or would one see them if looking regularly? If not clob, should something else be applied as a fusion preventative? (lol)

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    • Posted

      You can't go wrong with lots of coconut oil. I wish I'd known that decades ago. I used to scrub with so much soap and water, drying everything out. So bad.
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    • Posted

      I just use lubrication now, I don't  use Clob as a preemptive measure as I have found it to work well.  I do think that if someone has clear signs of a flare (whiteness etc)  then that is a different matter and maybe they should use the Clob. 
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    • Posted

      Hi, Can i ask how to use the coconut oil? and any in particular to use? very new to this and need all the help I can get! Thanks in advance!
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  • Posted

    Sparker:

    I have the same questions.  I have the itchy and use the ointment to calm the area.  I did not realize that LS was so dangerous, I figured once under control that was it and maybe it was like a yeast infection, may come and go. Now I am reading here that it is more serious and I really should follow up on it as the Dr. told me to do due because of  futher complications, which he did not mention.

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  • Posted

    Sparker:

    I have the same questions.  I have the itchy and use the ointment to calm the area.  I did not realize that LS was so dangerous, I figured once under control that was it and maybe it was like a yeast infection, may come and go. Now I am reading here that it is more serious and I really should follow up on it as the Dr. told me to do, because of  futher complications, which he did not mention.

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    • Posted

      The coconut oil keeps our skin from being dry, raw, 'sticky' – that's when it fuses. I just let it melt onto the skin. You don't need it running down your legs.
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    • Posted

      Where do you apply it? Would putting it in the area between the outer and inner labia at night be sufficient? 
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