Lichen Sclerosus

My 12 year old GD has this - imagine having to deal with it at that age! - it is no joke. However she is very efficient about it and manages her own steroid input herself, putting on the cream when it flares up and tailing it off in differing strengths as per instructions.

She found that cotton undies are good and no undies even better!

It tends to go in phases and flares up now and again with periods of relief from it. It is a blooming nuisance and jolly painful when it is bad. You have much sympathy from me.

I had to google this. I sympathise.

Hi Cheneslieges. My GP believes I have this problem, too, although he hasn't taken any biopsies as yet. I may still have that joy to come! Thankfully, the steroid cream is working quite well for me and things have calmed down a lot. I do know that, if he is correct in his diagnosis, it will be likely to flare up again and so it is a matter of managing it.

I found a lot of helpful information from members of the Patient website (www.patient.co.uk) where you will find a forum under 'Lichen Sclerosus'. There's a lot of good advice about using moisturisers, adding borax to a bath, what to wear etc., as well information about steroid cream. I hope this helps somewhat.

So sorry to read that your GD has got this, Luckygirl. It sounds as though she copes extremely well and I admire her. It's difficult enough when you get older!

Dear Luckygirl - I am so sorry to hear that your Grand-daughter has this - poor wee thing. It must be most dreadful for someone so young. Maybe us "oldies" are more used to things going badly wrong at our age - I just don't know how I could have coped as a teenager. Life is pretty cruel isn't it. Give your Grand-daughter loving support from me. XX

Reviving this thread as I have only just found it after inputting a search. Most people have never heard of it.
I've had this condition for many years. It comes and goes, flares up and recedes again, but I never think it's cured completely. Symptoms are soreness and itching, pain in passing urine and both very uncomfortable to manage.
One suggestion is don't use harsh biological detergents as traces remain in your garments and can aggravate the condition. I found Ecover helps and I wash my undies in that. My consultant gives me Diprobase which comes in a big pot and lasts for ages - it's important to moisturizer regularly to reduce the itching.
Hope you can update us Luckygirl. Let us know how things are progressing please.