Lichen Sclerosus

[sunni]

I have had IC for twenty years, and have just been diagnosed with Lichen Sclerosus, a skin disorder thought perhaps to be an automimmune disorder as several people I have spoken to have both IC and LS. Some have Lupus and IC and LS. Was just interested if anyone else has both LS and IC. Would love to talk to you.

Sunni

[vm]

Is that anything like scleroderma? I have heard of that disorder - not sure I have the name right, though.

[sunnidee]

I am not familiar with that, although I know it is a hardening of the skin. This LS usually affects post menopausall women and is associated with a thinning of the skin of the vagina, apparently it can affect other parts of the skin in people of all ages, but the type on the vagina causes soreness, redness, white patches, thinning and atrophy of the vagina. If left it can cause the vaginal lips to fuse. It makes intercourse painful also and the skin becomes sore to the touch, and red and patchy. The two words Lichen Sclerosus in themselves mean fungus and hardening, I think, but don't think it is considered an infection, nor is it curable or contagious, but like IC it may be classed in the autoimmune disorder group. After two weeks, I am feeling a lot better, but apparently it can return.

Sunni

[vm]

Wow - sounds very uncomfortable. Does estrogen cream help at all with the vaginal skin thinning????

[Hope]

Oh my, I have been waiting for about 8 years (is that how long I have been on this site-yikes) for someone else with this. I developed LS about the same time I developed IC. The LS began while I was pregnant with my second child, and the IC developed soon after delivery. Doctors didn't think they were related but I can't believe it is a complete coincedence that I got both at the same time. Feel free to PM me if you have any questions. It can get rather personal, but I am happy to talk with you about it on PM.

I just use clobetesol cream -- not sure that I spelled that correctly. At first I used it twice daily, and now just as needed.

Take care,

[sunni]

Hello Hope

Thanks for your letter. Over the twenty years I have had IC, I have only come across less than five people with IC, except for the ones in the support group. I developed IC back in 1985 out of the blue one day while living in FLorida, and had been riding my bike and had to go to the bathroom quickly. Over the next three pain filled years I was unable to get a diagnosis, until I returned to Canada in 1991. I had been in remission for a couple of years, and then I ate some strawberries and it came back with a vengance. Got diagnosed finally and put on Elvail which I still take today. I still have bouts which are caused by stress mainly, but the Elvail seems to give me a half decent life. About two months ago, I went for my yearly checkup and the doc asked what the white shiny patch near my rectum was and how long I had it. She suggested I get a biopsy thinking it might be cancer. I had had problems for the past several months with redness in the vagina which looked like when you scrape your knee. While in Hawaii this past February I began having splits and bleeding in my rectum which I couldn't figure out. Anyhow, had the biopsy and it came back LS. They gave me Premarin cream for two weeks and some cortisone cream to use. Haven't had much problem since then, but my IC can flare up late afternoon some days and have to go and lie down, while poor hubby has to bring me supper in bed. It is very tempermental. I have also had Graves Disease (thyroid problems) in the past which are under control, and also IBS which can flare up also. I have relatives on my Dad's side who have a number of autoimmune diseases and was just reading a letter before I came on here to answer your letter.

Am glad to have found someone with both these illnesses, and look forward to talking more. You may also write to me at vlohrenz@qcislands.net. I will tell you more about me in next letter.

Hugs Valerie