Lichen Sclerosis Anyone????

[Prairie Gal]

Jordozmom, I was Dx'd with Lichen Sclerosus in July 2008.  I'd had some burning and irritation, but not too severe so it took me several months before I made an appt. with GYN.   She checked and noted I had a white patch on the outer labia and did a biopsy right then.  They used a very fine biopsy needle and it hurt sharply for 8-10 seconds and that was it as far as pain is concerned. 

When the lab results confirmed Lichen Sclerosus, she gave me an Rx for Clobetasol ointment.  Instructions with it said to use a.m. and p.m. for 2 weeks and then nightly for "7-12 weeks" before switching to maintenance schedule of 1 or 2 times weekly.

After 6 weeks, I had some slight bleeding, so went back to GYN after discontinuing the Clobetasol for the few days until I saw her.  She noted that Clobetasol is a steroid (cortisone) and that it had thinned the tissue a bit.  One of the little cherry angiomas (innocent red spots we get in various places) was the source of the bleeding and she said switch to 1-2 times a week.  I now use it once a week and everything is fine.  That "7-12 weeks" is advised generally, I suspect, but in my case I didn't need to use it that long before switching to a maintenance schedule.

The 10 seconds of pain from the biopsy to get the Dx was well worth it.  Relief after starting the Clobetasol was swift, I'm happy to say!

Prairie gal

[Prairie Gal]

I forgot to say I had a follow-up appt. with a Dermatologist about 3 months after starting the Clobetasol.  She confirmed what I had read:  Lichen Sclerosus (LS) is "not uncommon for those who have autoimmune problems."

Be aware, everyone,  and don't wait to see your GYN if you have unresolved burning/irritation.  I knew my symptoms didn't seem to be from a yeast infection, since I've had 3 or 4 of those.  I should have seen my GYN sooner, but the burning wasn't all that bad.  If LS is left untreated, horrible things can happen.  I went online and saw some much too graphic pictures when I Googled images for  Lichen Sclerosus. 

Prairie gal

[jordozmom]

Prairiegal -

Thank you so, so much for your reply. I am so happy to know that I am not alone in this.  That is what my problem is mostly is just burning and irritation.  And same here - they keep saying it is a yeast or bacterial infection and I know that is not it because it is not the same.  This really does seem skin related and not infection related.  They've looked at and testing me for everything from yeast to STD's (SAY WHAT?! Explain that one to my husband!!!) but I am all clear except for this terrible skin irritation.  It is so hard to describe - mostly I am red and burning like a rug burn and I have white patches but they don't seem to hurt like the red inflammed areas.  It is just so frustrating!

But thank you so much for the news about the biopsy - you'd think after having a baby I wouldn't be that nervous but I am!!!

I forgot to say I had a follow-up appt. with a Dermatologist about 3 months after starting the Clobetasol.  She confirmed what I had read:  Lichen Sclerosus (LS) is "not uncommon for those who have autoimmune problems."

Be aware, everyone,  and don't wait to see your GYN if you have unresolved burning/irritation.  I knew my symptoms didn't seem to be from a yeast infection, since I've had 3 or 4 of those.  I should have seen my GYN sooner, but the burning wasn't all that bad.  If LS is left untreated, horrible things can happen.  I went online and saw some much too graphic pictures when I Googled images for  Lichen Sclerosus. 

Prairie gal

[tuckerdog]

I had the biopsy also and it was not a big deal.  My treatment is the same - cortizone cream.

Tuckerdog

[seren]

Hello All...

I think I may have this miserable condition too.  For the past couple of years every 6wks or so I get intense itching/soreness down below front and back (no discharge) I have been to my GP but they don't know what it is and say the skin down there does not look typical of LS    they mentioned it might be dermatitis but I changed powders, soaps etc to non-bio/FF but it had no effect  I have so many issues with the SjS that I only tend to go and see the docs with the most problematic of symptoms., so I have not persued it, I have already been referred to a cardiologist and a orthopeadic surgeon so I feel like I bothering them Too much already  .

When this thing flares up with me I have noticed that I am very dry down there and the skin is also a bit crinkly....so I am not sure whats whats, (altho I have no trouble in getting in the mood-if you get my meaning) 

Steroid cream does not seem to help much, in fact if there is any lubrication around that area at the time of the symptoms it seems to itch more, so I have been just putting up with it, at some stage I am gonna have to get it sorted, its horrible, yet another thing to deal with 

Just thought I would share my story 

Take Care
Paula

[rapnzl]

An old topic, but for me, a new illness. Prelim diagnosis today, follow up with specialist tomorrow. The pain, itching, and tearing, peeling skin are enough to drive a person insane.

Soooooooo very glad, simply to know I am NOT ALONE. 

Unsure if anyone will read this, as it is an old thread, but I am certain this is at least partially related to SS (at least the immune-system component, anyway). That said, I send my hopes that those dealing with this are finding comfort, and a solution.

[jordozmom]

I just wanted to follow up on this in case anyone should look this topic up - it turns out that, in addition to LS, I apparently was suffering from some atrophy down there as a result of hormonal changes thanks to perimenopause (yay me, groan).  I was prescribed Premarin cream and MAN, what a difference!  The clobetasol I was prescribed for the LS helped clear up the ?plaque? I had, but didn?t relieve the awful burning, stinging and dryness I was having down there.  The Premarin has made all of those symptoms disappear!  From time to time I will get a little sore down there - I usually notice it after I urinate - and then I will realize it is time to apply more Premarin cream.  I also have taken other self-help measures including:  Tom?s body wash (scent and dye free) for washing down there, Seventh Generation toilet paper that is free from bleach and perfume, and I make sure to wear cotton undies and unscented cotton pads and panty liners.

This post was from 8 years ago and I had already been suffereing for a while beforehand - that put me at 39 years old - I would have never guessed it was perimenopause!  I suffered for years before getting the Premarin!  So, don?t dismiss hormones as a possible cause if you are suffering from this horrible condition!

[finallyadx]

So sorry to hear this, my sister who had ovarian cancer had this at the end stage of her disease, however it is not associated with ovarian cancer...I think that her system was truly just overloaded from chemo.  She did find some relief with a prescription cream that was prescribed to her by her dr though...

Thinking positive thoughts for you and hoping you can find some symptom relief.