I have submitted comment to this site, but am disappoint...

I really agree. It helps to know others experiences on this subject. Others may have some valuable advice that we could all benefit from!!

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Hi there please stay on this site ..I would like some more info as well.Plus we won't feel so alone if we know there are other people with this.

I would like doctors to take notice of what we talk about as well and maybe they will try to get some more information to help us with other creams ? or maybe natural healers ...Maybe foods make this problem worse.I have noticed that peppers seem to bring it on !.:wink:

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2 replies so far - I'm glad now that I mentioned the previous lack of response! I'm interested in the peppers comment...

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Hi J.G.

I found the previous format for comments and replies on Patient UK wasn't easy to follow - and not a lot of people left a name/nickname or date to refer a reader to earlier comments - but this new forum is much better and easier to search through

I saw your comment dated Dec 22, 06 but you didn't say when your previous comment, the one you wanted feedback on, was dated.

Don't know if you've visited the following support website. It's at www.lichensclerosus.org

What was your original comment by the way and the date?

I [u:df7c107b1f][b:df7c107b1f]also[/b:df7c107b1f][/u:df7c107b1f] hope you stay on this site as it does help to talk to other people in the same boat so to speak

Marta

Hi I am another one who would like to maintain a chat type site where we can all swop ideas, treatments, results, etc as the gp `s seem far from helpful.

I have put several replys up and asked for other males to comment on there experiences.

Lets keep responding / replying

Pete.

hi,i have just got onto this site.i need to talk as others dont really understand l.s.i am 45 and had l.s. for 3 years now.getting told was ab awful,and i was in agony with it,its calmed down through the years,but prone to a flare up around my period.wondering if the use os s.towels make it worse?...at the moment i am off work as it flared up last wednesday,and i cant even walk now,ive cried alot over the weekend,its so painful,esp when i go to the loo.i use benovate cream,but that stings to put it on aswell at the moment.any ideas how to soothe it,apart from warm baths or showers.noboby i know has heard of it,i am slowly losing all my outer bits,and my clit is covered over now..help.and thanks for reading.please reply and i promise i will write back,angela

Hi Angela

You sound in a bad way - have you been back to your doctor or asked to be referred to a dermatologist or gynaecologist if your doctor doesnt know much about LS. You can also go to your local GUM clinic without any reference to your doctor and they are very knowledgeable.

I am using dermovate, emulsifying ointment (much better than cream) to wash and soothe and have just been given a prescription for oestroen to try to thicken the skin.

You can also get help and support from http://www.lichensclerosus.org/

there is a lot on information out there

Hi Angela

I haven't found anything more soothing that lukewarm baths with 2 tablespoons of table salt added to the water. I sit there for 10 minutes - very soothing!

I have had good results with natural 'live' yoghurt too. Just a little put onto the area and washed off again after 1 hour.

Recently tried Aqueous Cream with disastrous results (within 1 hour I was swollen up and in pain).

I was interested to read that the Betnovate stings as you put it on. Does it improve matters once the stinging has stopped? i.e. what are the benefits that you have found from using Betnovate?

[quote:4044f7d70f=\"J. G.\"]I have submitted comment to this site, but am disappointed at the total lack of replies and feedback from other sufferers. Of the 24 letters I see only 5 responses. How about more replies - we are in this together!

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I AM 53, HAD THIS PROBLEM SINCE OCTOBER 2006. SAW MY GYN IN EARLY DECEMBER AND EVERY 2 WEEKS THERE AFTER UNTIL MAY OF 2007 WHEN HE SENT ME TO A WOMEN'S SPECIALIST WHO SPENT 10 MINUTES WITH ME AND SAID LS. MY DOCTOR DID A BIOPSY AND THOUGHT I HAD LS, BUT SENT ME TO THIS OTHER DOCTOR TO CONFIRM. MINE MOVES FROM PLACE TO PLACE, BUT STARTED AT MY RECTUM. SOMETIMES IT IS ON MY VAGINA, SOMETIME IT IS UP MY BACK ABOUT 3 INCHES. IT ITCHES AND IS VERY PAINFUL. FEELS LIKE IT IS SPLITTING OPEN. WHEN IT IS IN THE VAGINAL AREA, SEX IS PAINFUL. IT IS ALWAYS THERE, BUT SOMETIMES WORSE THAN OTHERS. I HAVEN'T FIGURED OUT WHAT CAUSES IT TO FLARE UP, BUT EATING FRESH PINEAPPLE SEEMS TO MAKE IT WORSE. THE DOCTOR GAVE ME CLOBETESOL, BUT ONLY FOR THE RECTUM AREA AND UP MY BACK. IT IS A STEROID AND SAID IT WOULD CAUSE THINNING IF USED ON MY VAGINA. HE GAVE ME AN ESTROGEN CREAM TO USE THERE. HE TOLD ME I WOULD ALWAYS HAVE TO USE THE CLOBETESOL AND NEVER TO USE IT LESS THAN TWICE A WEEK OR IT WOULD FLARE UP WORSE THAN EVER. IT HAS ONLY WENT AWAY ONCE AND IT ONLY LASTED 2 DAYS. MINE STARTED OUT ITCHING AND I THOUGHT IT WAS HEMMOROIDS. THE CLOBETESOL PROVIDES RELIEF, BUT MINE IS NO BETTER. IT HAS BEEN SO BAD I COULDN'T TOUCH MYSELF TO WASH.