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Diagnosed with LICHEN SCLEROSUS but have NO SYMPTOMS

Autoimmune Diseases | Last Active: May 25 8:03am | Replies (5)
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@bwe

I’d suggest considering treatment; as a retired nurse practitioner, I’ve seen LS progress to the point of almost obstructing the urethra in an asymptomatic woman. (She obviously was not someone who came in for care very often.)
Please consider that there could be clear advantages for you in treating this. I totally understand hesitancy to take medication, but perhaps in this case it’d be in your best interest.
Best wishes as you sort this out and make a decision.

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Replies to "I’d suggest considering treatment; as a retired nurse practitioner, I’ve seen LS progress to the point..."
brandysparks | @brandysparks | May 23 12:13pm

@bwe @booville - Hi. Yes, please get thee to the gynecologic oncologist for further testing and possible treatment.

This past year, from February to the beginning of May, I went through 2 procedures to (hopefully) remove the lichen sclerosus (LS) that I've had for 40-some years, and that just this past 1/2 year, as far as I can tell, developed into VIN II-III (Vulvar Intraepithelial Neoplasia, at the highest levels), a precancerous condition.

I won't go into the details of the procedure/s for now, but absolutely follow and USE the preventative measures (including the Clobetasol propionate 0.05% that I've used as prescribed - off and on - over all these years. To my understanding and extensive (layperson) research, it is THE treatment to use at this time, again AS PRESCRIBED by your gynecologist (preferably a gynecologic oncologist, like I was referred to this past year).

Stay on top of it with your doctor's guidance, and chances are you will be able to manage it effectively. Glad you have not had any LS symptoms either.

The origins of LS are unclear to this day, though the automimmune response and genetics have been presented as possible origins for LS - but the "Why?" has yet to be answered...kind of amazing, even to this day! Also, there is no cure. I have not read any dispositive research that indicates diet contributes to or can control it.

There is an organization I have not explored in depth yet, but others seem to have been happy to have found it online: lssupportnetwork.org.

Also, BTW, there is "VAIN" - which is VAginal Intraepithelial Neoplasia - which can be problematic as well.

Let us know how you fare as your pursue your options. Best wishes!

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