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New skin concern - family history of lichen sclerosus

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Posted 4/9/2014 11:56 AM (GMT 0)
I found out another family member who has gut issues also has lichen sclerosus.  My father, who was undiagnosed but certainly had CD, also had it (it is rare in men apparently).  This condition is possibly linked to the immune system as well.  My sis developed skin cancer in the area of the sclerosus (which is a possible side effect of the condition.  My father also had skin cancer.  Since I tend to have similar issues as my sis and Dad in both the gut and the skin, I am now starting to keep an eye on this as it is most common at menopause and I am heading there.  I feel so bad for my sister as it was not found until late and she is suffering.

Anyone else here with this condition?  Would like to know what to watch for in the beginning other than what I have read online...if anyone caught it early.

Posted 4/9/2014 4:21 PM (GMT 0)
Hi habs,

I have lichen sclerosus also and unfortunately suffered with it for quite awhile before seeing my GP who was doing my paps and insisted I see a Gyno dr to have it biopsied. I am on a steroid cream treatment and it is well controlled. I now only have to use cream about once or twice a week. I only really have issues when my crohns is flaring which makes sense. I now see the gyno once yearly so they can look for changes that might indicate the presence of cancer but my dr said the cancer risk was not extremly high but there is a slight risk so they are careful about it.
I am sorry your sister was so affected by this. I will keep her in my thoughts.
Posted 4/9/2014 5:26 PM (GMT 0)
tewcute - you do not know how much your response means to me!  Thank you for sharing!  I have to make my annual appointment with my gyn and plan on asking for them to watch for this going forward.  I have had several odd patches on my skin on my arms that I always wrote off to potential psoriais (something from Moms side instead of Dads for once).  Now I will keep a closer look at those blotches.

Thanks for letting me know about you!

Posted 4/9/2014 9:26 PM (GMT 0)
You are more than welcome! I got to help a knowledgeable veteran member! Yeah! yeah
Posted 4/10/2014 2:38 AM (GMT 0)
Hi Habs,
I also have lichen sclerosis, but I think it's a mild case, and yes, it didn't show up until menopause. My gyn had a medication compounded that combines a very low dose of testosterone with a steroid cream. I guess the testosterone helps to thicken the tissue as it becomes very friable. I used it for a couple of weeks when I was first diagnosed, and now I only need it if I am itching and then only a couple of times a week. It seems to completely go away at times. It does get worse with flares of Crohn's, but I don't know if the two are connected.
Posted 4/10/2014 1:03 PM (GMT 0)
Thanks gumby!  Between you and tewcute I feel much more reassured about this.  My sister is someone who toughs it through things even when she shouldn't...I am guessing that is why she seems to have a much worse outcome versus the better outcome you guys had.  It seems like she just lived with the pain and problems and never got any treatment until after the cancer diagnosis.

I was hoping I could cut back on seeing my gyn as I head into menopause, but it looks like there is good reason to keep going.  I can change my jeans, but I can't change my genes!

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