I’ve also just been provisionally diagnosed with LPP (assuming you mean lichen planopilaris). I had previously been mis-diagnosed years ago and told it was dermatitis so I cut out all hair styling and hair colouring and hair treatments. Went to natural shampoo plus water being the only things that ever touched my scalp. No improvement…in fact started to get open weeping sores. So went back and was again mis-diagnosed with dermatitis- but this time I was told I just ‘sensitive’ to the usual biome of micro-organisms that live on everyone’s scalp and nothing could be done.
I recently was evicted by a landlord selling up, and so ended up at a new GP surgery and utterly fed up decided to push for this to be looked at again. The GP said it’s dermatitis and I begged for a referral to dermatology saying I thought there might be an opportunitistic secondary fungal infection going on given the itching and hair loss. She did the referral. But the NHS in its wisdom decided I must have been a time waster because I got an appointment with another GP the next town over who specialises in dermatology.
After a long lecture regarding dermatitis from this GP, she deigned to look at my scalp. “you have bald patches!” She exclaimed. And “there’s a lot of scarring”. I was like “yes…and all those bald patches were open weeping sores and I tried to get treatment”. She then said, it’s not dermatitis, I think it’s LPP, so Im going to refer you to the actual dermatologists at the hospital in the city, I will tell them you need biopsies and then they will probably do patch tests to see what treatments might work. Then was the talk about the months and months of wait lists ahead of me.
She said usually the treatment is high strength hydrocortisone creams and asked if I’d ever had any given as prior GPs thought it was dermatitis, and I’d have seen some improvement. I said no, because I’m allergic to everything based on mineral oil and no one knew if there was any prescription strength hydrocortisone creams made without mineral oil. For reference mineral oil is usually listed in the ingredients as liquid paraffin or petrolatum. She said that might be a problem making my LPP completely untreatable, except by oral steroids which have their own side effects.
Anyway, been given nothing to help and am now on the “real” dermatology referral wait list and was told vaguely I might be seen “sometime this summer”.
Its literally taken years to get a real referral to dermatology. It’s devastating really. I’ve been looking into wigs but am also allergic to polyester and all the wig caps are made from that.
The thing that upsets me most about LPP is the scarring. If I am to be bald, I’d be thrilled to have a smooth, beautiful bald head. But a scarred and disfigured bald head with scaly skin and sores that looks like it is leprosy? God, I’d be frightening children and adults alike. Maybe I’m catastrophising, but Google images did not help in that respect.
After a weepy day or two, I asked my DH if we could afford me to get a second opinion from a private dermatologist. We are low income and it’s £170 for a consult, but he agree it’s what we need to do, so I have an appointment on 2 Feb. I wish I had done it sooner tbf. But I was told for years that it was just dermatitis, caused by something I was using on my hair and any hair loss was temporary as it would always grow back.