Lichen sclerosis – managing itching while waiting?

[Itchyproblem]

I have horrible vulval itching which the GP initially thought was thrush and I DID have thrush, but a dermatologist explained that yeast is an opportunist so it could have taken up residence as my skin was already damaged. They think it could be lichen sclerosis as my vulval skin around my labia majora, perineum and anus is very pale. I don't have white patches.

I'm waiting for a skin biopsy but the wait is likely to be months. The itching drives me mad at night especially when I get too hot. It's becoming increasingly distressing as I wake up with painful scratches.

I only have Trimovate cream which a GP gave me but it hasn't helped. I use Yes moisturiser twice a day on my vulva but that isn't helping either. Please can anyone advise if they have LS what the best options are to ease symptoms? The derm advised waiting for a biopsy before trying a strong steroid (Dermovate) but the waiting is very hard. And the pain from damaged skin is starting to affect my desire for sex as it's sometimes painful 😣

Could you get a second opinion? My mum has this and was given a strong steroid just by the GP. She hasn't even been referred to a derm. I think she does have white patches and is in her 70s so prescription guidelines might be different if you're pre menopause - but still it does mean the GP can prescribe the steroid for you. I would ask again.

Thanks, I guess I could try going back to them but I've seen two different female GPs who both said they didn't know and wanted me to see a derm. As waiting lists are so long, they've also referred me to gynaecology to cover both bases. I feel like I'm always going to the surgery to ask them to look at my vulva!! They've seen it at least 4 times. I guess it's maybe worth trying a GUM/STI clinic in case they can help, even though it definitely isn't an STI

This is brilliant! & Vaseline once a day (before bed)

amzn.eu/d/hjlN3mO

Thanks Rulu :) I'd just stumbled across Hydromol ointment and it looks great! I've spent a small fortune on various emollients, Cetraben, E45, aqueous cream etc. but they've all been creams and it sounds like a thick ointment is better for the vulval skin. I'll give it a go!

Oh I see you have been prescribed what I was going to suggest. I had trimovate once and it didn’t work then I got prescribed it again and got told by the pharmacist to keep it in the fridge (didn’t notice the first time) and it actually cleared up my itching. I just use it now and again once I feel my itching flaring up.

I have lichen sclerosis. It's fine mostly but flares every few weeks and needs ointment for a few days to settle. Otherwise the itching is awful and the skin breaks and is so painful. Gynae consultant diagnosed it years ago. Since then has been managed with Betnovate ointment. Can you get a referral? If you have health cover through work it is much quicker.

I was diagnosed in a GUM clinic and treated immediately without biopsy. Sadly it was quite advanced at that stage so probably visually conclusive.

One thing the consultant did share that might be useful,
make sure your skin is treated with emollient before applying the steroid to absorb as much as you can of a lower dose.

I find ointment rather than a cream for steroids works much better for me. Much more soothing on vulval skin.

You could ask for an ointment to try.

I suffer from a hormone related itch at times and vagisil with the lidocaine in stops the itch

I started suffering from this back in 2021 and the doctor prescribed Daktacort. This thread has spurred me on to get some more, as it has been itching a lot lately and is really bad at night.

I'm glad to hear yours is mostly managed well, gives me hope for my condition (if mine is LS). You're right, it's worse when the skin splits. I have a fingernail size patch of open skin from scratching in my sleep, it's horrid! I do have work cover so am looking into seeing a gynaecologist this afternoon as the dermatology waiting list is so long, even on private healthcare

I have some in the fridge and tried putting some on today. I was initially prescribed to use it for a week twice a day but it didn't seem to help. In desperation I might give it another go to try and soothe the skin. Interesting yours is bad at night too, that's when mine bothers me most too. The pharmacist I spoke to suggested it was threadworms due to bedtime itching! But that has been ruled out categorically by my GP and dermatologist

Thank you, the ointment tip is a good one to have

When I saw the doctor in 2021, there was a very small patch of hard skin , this is what gets very itchy. so definitely not threadworms.

It's annoying with the cream having to be kept in the fridge, I don't want to have to keep carrying it backwards and forwards, and my kitchen window doesn't have a blind, so I don't want to apply it in there

I have done an econsult and referred them to the 2021 appointment/prescription and asked for more Daktacort or something similar.

I had terrible itching earlier this year. I saw a gynaecologist and he said it might be LS but didn’t take a biopsy and said there weren’t obvious white patches. He prescribed betnovate ointment anyway and it has worked brilliantly. He said it might have been enough to break the itch scratch cycle even if it isn’t LS.
I don’t use the ointment regularly anymore, just when I feel it may be coming back.
I would try to get some ointment without waiting for the biopsy if you can, I don’t think it would cause any harm.