Lichen sclerosus

[tonsilitis]

Hi,

Tried on child's health board but no response so I thought I'd try here.

Feel like it's a long shot but does anyone have any experience of lichen sclerosis on a young girl. The doctor thinks my 6 year old DD has it, and I only have Google to go by.

Thank you

Hopeful bump

Not on a young girl but my mum has this. It took a long time to get a diagnosis (she was referred to gynae) and I think treatment included steroids.

I'm sorry, I don't, but bumping for you.

I have had it myself (diagnosed around 27) but have seemed to have grown out of it (now 33)

It’s possible but rare in children . Usually older ( >50 years)

Yes! Dermatologist gave a v high dose steroid which we applied in v small amounts on a cotton bud every night. Baths of just water with a gentle non soap cleanser (Cetaphil i think) for occasions when a proper clean was needed. Cotton underwear, avoided cycling or anything else that could irritate the general area. Always rinsing off in a bath after swimming so chlorine water doesnt sit on the skin down there. Basically giving the cream the best chance of success.

Once it cleared up to the point of not being visible we then moved on to a maintenance cream that is non-steroidal (can't remember the name but can look it up if you want) which I assume we'll be using for a long time.

Its also worth noting that a definitive diagnosis requires a vuval biopsy which the dermatologist said was an awful thing to put a small girl through. She worked on the basis of it looks like LS so we'll assume it is and treat accordingly.

Oh thank you so much everyone!

Glad to hear that it can potentially disappear.

And also really thankful for all that advice @Pirrin

What is the outcome looking like long term? Will she develop properly or will there be scarring or any issues?
Also how long did you use the steroid cream for?
Was the area all over the vulva? And has it Changed over time ? My DDs is only a small patch, I'm wondering if it will spread.

My mum has this and my Dd when she was around 8/9. Took AGES to diagnose but then after about a week of a steroid cream and has never come back and she is 17 now. Good luck.

I didn't use the steroid cream for too long as they mentioned it would thin the skin.
I was under the hospital every 6 months but they then discharged me once it was gone for a year. Hasn't impacted me at all.

In our case it was 2 v small patches. It took about 2 weeks of steroid to start changing and a month to disappear.

I found the stats on recurrence in adulthood a bit disheartening - it eventually returns in a lot of cases. I think something like only 25% of girls achieved complete remission.

Thanks all, very much appreciate the responses

Sorry to jump on this late but ive had LS since arlund age 7. It has times where it is bad and times where i have no symptoms for months on end. Certain foods and activities csn trigger it for me but my main trigger is stress.

There are some great support groups on facebook id reccomend joining! Alot of people have never heard of it or theres alot of misinformation out there - even from medical professionals sometimes!

My midwives have never heard of it which is concerning

My dd5 was diagnosed at 2,she had some fusing of her labia but that was repaired with the steroid cream. Current maintenance is hydromol every morning and evening,more if required through the day and using dermol when bathing.She does still have flare ups but steroid cream is applied twice a day for 2days and that clears it up without any white patches appearing.Dd can go months without any signs or symptoms but we avoid fabric softeners,perfumed toilet paper,tight fitting underwear or trousers.I second what previous poster said there are some great facebook groups that have a fountain of knowledge and support.

Thank you both for your replies. They are so helpful.

I have been to see a pediatric dermatologist and they were unsure if that's what it was or not. Want to see her again in 6 months.

So for now it's just checking it doesn't change or get worse.

@tonsilitis
DD has this. She was diagnosed last June. She’s now 11. If you need to ask anything please feel free to dm me.