Lichen Sclerosus ~ My child's journey with LS

For two years, since the age of 5, my daughter suffered with:
- itchy pain in her genital area
- sore & raw patches of genital skin
- blood in stools
- stomach cramps


We spent many a night trying to comfort her, whilst she cried, wriggled and asked why it won't stop. Nothing would help, painkillers doesn't stop it, eventually she'd be so exhausted she'd fall asleep. It would last for days.


I'd get calls from school to tell me there had been quite a lot of blood in the toilet & she was upset. Or that she was having bad tummy pains.


We were treated (generally over the phone) for worms, thrush, constipation, given dry skin creams and were referred to the constipation clinic.


💙 This was all misdiagnosis. 💙
One January, after a particularly bad episode, I noticed she had raised, dark, blood like blisters on her genitals. It scared the hell out of me & I made another GP appointment.


This wonderful GP took the time to look back over my daughters medical history and suggested that there's a possibility of Childhood Lichen Sclerosus. We were referred to a specialist.


My daughter was 7 when we finally got the diagnosis, this was two years ago. The specialist said that GPs may only see one or two cases in 10 years in a child and it often gets misdiagnosed. My daughter and I took the GP a present and a card to thank her for taking the time to investigate this further and finally getting where we needed to be.


The specialist said we just caught it in time before it has done too much, long term, damage.


My daughter is now 9. Unfortunately there is no cure and it's a condition which just has to be managed with steroid creams & cuddles. There's a chance it may disappear at puberty. We hope.


She gets flare ups, it's distressing, painkillers don't work, but we know that generally it will improve over a week.


💙 Be aware, look out for the signs, raise awareness 💙