horribe discovery

Hi Kathleen,  I am 76 and I have suffered with this for 33   years.

Womens bodies are sometimes very fragile.

I wa diag. with LS just a week ago.    I was prescribed Clobetasol, but I believe I have been using too much, 1/2     tube in a week, because I am now more irritated .  I have been rubbing it just about everywhere down there. My doc. didn't tell me anything about the disease or how to use it.  She just said use as directed twice per day.  So I read the  insert and thought I would discontinue in 2 weeks.  When I called her office to ask if I should taper off slowly, the nurse told me ," Oh no she said you have more going, keep using it, and she will discuss it with you in two months at your next visit."  I know nothing.  I don't know where to use it, how much to use, should I use something with the clob.  If I put clob. where I don't have LS, what will happen?   What is Dermeze.  Is it similar to clob.?  Thanks for any info.

       

It sounds like you are using too much Clobetasol.  I think you should spend an hour listening to Dr. Goldstein's webinair.  The link for this is posted in the very first pinned discussion on this forum.  Just click on the Lichen schlerosis heading and you will go to the top of this forum Scroll down to the New to Ls start here post and good luck.  This is so informative and I think you will hear all the information you need.  It is awful when you are new but this webinair (talk) really helps and gives advice on the best treatment for this condition.  A tube is suppose to last for 6 months, you can do so much harm using too much steroid, go carefully.

Judy, as you'll learn in Dr. Goldstein's talk, clobetasol purposely thins the LS affected skin because it's thick, poor quality skin that gets inflamed at the bottom of the layers of skin. But we try not to get it on healthy skin – over the long term it would thin that skin, not a good thing. So, dial back to an amount of clob the size of a small pea, per day. I think it's safe to say you've done your daily couple of weeks and now you can use it twice a week. In this forum we talk about lots of things besides (but not instead of) the prescribed cream/ointment. Dermeze is one of those things, it's glorified Vaseline, which makes a good barrier so urine doesn't irritate LS-flared skin. There's coconut oil (more healing power than Vaseline, washes out of panties); and baking soda baths/rinses (1/3 cup in a bath, 1 tbsp in a splashing/sitz basin, a pinch in a spray/squirt bottle). Many of us have found those two things very helpful. The prescription takes a long time – months, up to two years, to really settle the LS down – depending how bad it is now and how aggressive a version you have (there are several) so we want other things to soothe and protect. Sugar and stress will make it worse (and of course, what do we like to eat when we're stressed-out? Sugar. Double-whammy.) So, sorry you have LS, but a diagnosis is a lucky thing to have. Many of us oldies fell through the cracks (me, for forty years).

Judy, that sounds like far too much. Don't go to the other extreme though or it will get away from you. I use Advantan fatty ointment. You could ask about that as it is not as potent. It is absorbed better than a cream as well. I am allocated two tubes per month but usually come in under that amount. Use a mirror if you can to look for white spots and anywhere it is itchy needs the ointment. Ask your specialist to give you a diagram of where she wants you to concentrate. I am told where to be vigilant. 

I use dermeze as well. This you can be liberal with and put it everywhere. I find it especially handy when I go to the pool to try to protect the area from the pool chemicals.

So, use your clob as necessary and the amount that does the job on the areas that need it. Dermeze is not harmful and protects the whole of your vagina and anus and outer areas.

Try not to stress or worry too much. It will get easier to look after your LS and there are worse things. 

All the best!

Thanks for the responses.  I have two areas with the white patches  and one area -different place from the patches -that itches but not white.  I put the clob on these 3 areas.  Then I have iritated, red, torn area along side of clitoris.  Do I put clob there?  It doesn't itch, and not white. It is very raw. Do I put clob there ?  My clitoris is changing.  I think skin is growing over it.  But, it doesn't itch either. The raw area is right next to clitoris and extends down.  Should I put clob on the clitoris ?  Will it cause UTI's ?  I feel that after reading quite a bit already about LS, I should know these answers.  Maybe I am just overthinking this. 

Anywhere at risk needs the ointment. So I would put it there. You are not overthinking, you are just trying to get it right. Ask your doctor where you should be putting it too. Tell them what you have been doing and they will add anything you need.

Definitely apply clob there. It's very flared-up LS. I use clob daily while it's that bad, and use plenty of coconut oil. Just wait half an hour after applying the clob.

Hi Judy:

Just my story and experience is what I can offer.  The first time I was given Clobetasole was for Frost Bite on my toes, to use it caustiously that it will thin out the skin.  I was given it again after the LS showed up.  I use it only when I am itchy, just a touch in that spot and back behind tha anus and I don't rub it in real hard, it will thin out the skin.  I have a large tube that has lasted me a year.  See what some of the other ladies have to say.

all my best, keep asking questions.

kathy

I agree, a tube lasted me a year. I was on it for 18 months and was fairly satisfied with how things had settled down, but as I've said elsewhere, my gynae switched me to Protopic (tacrolimus) and admitted that only the cost keeps her from prescribing it first. Ive been using it about six months now and I do fing im not getting the tear in my perineum, although its always white, more or less. I use it every third day and generally find I'm having the odd twinge by then anyway. It does burn a little, but I'm OK with that. I was very pleased with how quickly it helped heal after I stretched and released the adhesion on my fourchette.

I am using emul cream now because I read that was good to use with the clob.  I am going to try the Dermeze now. I have used the Clob for two weeks twice per day.  I don't know if it is working. I still itch and still have white patches. But I read somewhere that Clob may irritate but still be working. My doc is out od town. I see her in two weeks.   I talked to the nurse once and she just said keep using it.  ..twice per day for 4 wks.

 

I just listened to Dr. Goldstein's talk.  I am buying the squirt bottle.  I use the squirt bottle after peeing, right.  Do I dry with toilet paper afterwards ?

Thank you.

Jusy

Yes Judy.  Spray and pat dry, do not leave wet as this exasperates the condition.  I also found that a pinch of bicarb in the spray helps to calm things down.  Shorten the tube inside the spray so that it works upside down.  Do not use it every time though as I have found that continuously washing makes the ls worse.  Twice a day is sufficient for me, what I do is I use Epaderm to wash things down their every other time.  It is a fatty ointment that you can wash with. Hydramol is similar.  This also moisturises the area which is what you need to do every time you pee.  Even after washing you need to moisturise to protect the area.  Doing this means you are protecting the area from urine for the next time you pee.  I also use coconut oil when I am sore and Manuka honey on tears.  You will find your own way of managing this condition which seems to be all we can do until they find a cure.  I hope this helps you. Take care.

That sounds just like me, Sheila. But it happened to me before I was diagnosed. Watch that hole. I had the hole before the big abcess. Bacteria can get in. I was squeezing it to get the smegma out and it still go badly infected. Just leave it alone, other than bathing with baking soda and using coconut oil. And clob daily while it's so bad.