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Women's health

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Lichen sclerosis

8 replies

dontbee · 27/06/2026 19:37

I’ve just been diagnosed after suffering for months, too embarrassed to go to the GP- stupid, I know. I’ve been given a strong steroid cream, medicated wash and an emollient barrier cream. I’m utterly miserable. I believe this was triggered by a serious health issue I had a few months ago, it left me with a few nasty conditions but this is by far the worst. Has anyone else gone through this? Please tell me it gets better.

OP posts:
dippy567 · 27/06/2026 19:42

Yes I've had this - used the steroid cream religiously for 2 weeks or whatever was advised and now use every so often for 'maintenance'. Had been really itchy before and now its not - everytime I feel beginnings or itchiness I use the steroid cream for a day or so - i have it on repeat prescription now. I had it for ages before going to gp too.

Crikeyalmighty · 27/06/2026 20:08

I’m pretty sure I had this around the time of the menopause but was too embarrased to do anything about it -it was totally dreadful - I managed to get a special tar like cream from Australia on the internet and it gradually eased after 6 weeks or so, but had it at least a year before I did anything - after2 years it went away and have never had it since .

CrowsInMyGarden · 01/07/2026 18:39

It is an awful condition.

I was diagnosed in 2018 and was prescribed Dermovate Steroid and moisturiser. Never been told to use medicated wash and I'd be a bit hesitant about that to be honest.

Mine was never itchy as some people say it is, just a raw soreness/burning.

I quickly went into remission but still had some soreness, even now although it usually feels fine if I get stressed it can become sore. I saw a pelvic floor physio who said that this maybe because my brain was anticipating the soreness and my pelvic muscles responded by tensing up. If I am busy gardening/exercising or concentrating on something it usually goes.

I now am on a maintenance dose of Dermovate Steroid Ointment twice a week and moisturiser after every wee.

There is an excellent facebook group Lichen Sclerosus UK support group for women which is worth joining as they have so much info on there but here are just a few random things that I found helped me.

Don't have hot baths - showers are better.
If you do cheat and have a bath (I do sometimes) don't use bubble bath. Some people say Epsom Salts/Dead Sea Salts are ok.

Don't wear tight trousers - anything with a tough seam isn't great.

On Amazon they sell things that look like gel sanitary towels - they are normally used by women who have just given birth and go in the freezer. Nice and cold and ease the soreness. Or in an emergency a coke can that has been in the fridge - just try to remember not to offer it to anyone else after.

A doctor said if I was particularly sore I could use Lidocaine (need prescription) or EMLA (from chemist). Both are numbing creams. I use occasionally. Stings at first but then numbs.

Some people take Amitriptyline for nerve pain. I tried it and helped me to get a wonderful sleep but didn't really help with the soreness so I stopped.

Sometimes vaginal dryness can co-exist especially if you are of menopause age. There are all sorts of treatments you can discuss with GP for this once LS is under control.

Are you having follow up appointments? You should just to have someone keep an eye on things until it settles. I was under the Vulval Disorders Clinic in London for years as there is a higher chance of Vulval Cancer in women with LS and this terrified me but they say it is in remission and I feel I can manage it on my own now.

I can remember the early days and feeling such despair. I really hope yours settles soon.

ps. double check out the medicated wash as I have just googled and got this response: "No, you should avoid using medicated, scented, or antibacterial washes on your vulva when you have lichen sclerosus (LS). The skin with LS is already very thin, delicate, and prone to tearing. Medicated or harsh intimate washes can strip away the skin's natural moisture, leading to severe irritation, dryness, and worsening of the condition"

If you have any particular questions I'd be happy to answer.

DirtyGertiefromno30 · 01/07/2026 18:49

Yes l have it l was diagnosed 3 years ago . I have Elocon steroid cream twice a week , Hydromol twice daily and Vagifem pessaries twice a week .
Mine is in remission ATM thank God.
I was told the chance of Vulval cancer was only 3% to 5% that's high enough l know . I don't use anything to wash with except the Hydromol , l use it like soap . Good luck @dontbee👍

Bug84 · 01/07/2026 18:54

I have this. I use dermol 500 to wash in the shower and have dermovate which I use now and again (probably not as much as I should at the moment)
I was diagnosed about 5 months post partum after itching and being sore through most of the pregnancy, and thinking I had thrush! It doesn’t bother me much any more - I just used the dermovate when it gets sore. I did have to see a gynae privately to get the dermovate though. The gp tried me on a less strong steroid and it didn’t work.

DirtyGertiefromno30 · 01/07/2026 19:11

Also l was told to examine myself regularly for any changes in the Vulval appearance and any lumps . If anything changes then straight to the GP. The sooner something is found and treated the better the outcome .

Donotfitin · 01/07/2026 20:35

I was misdiagnosed with it… it turned out to be perimenopause

dontbee · 04/07/2026 09:26

Thank you for all the advice. I don’t feel like I can speak to anyone in real life about it, it’s very isolating. The steroids are helping so far and I have booked a follow up GP appointment in a couple of weeks to make sure I’m getting checked again. Really appreciate the advice.

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