lichen sclerosis

[Diolch1]

been diagnosed with this in April. Gynaecologist has given me Dermovate and told me how to phase down frequency. I’m now suppose to be using it once a week but the itching is still so bad it’s driving me mad. ( not literally). He wants to see me again in 12 months , do I just carry on or should I get back in touch with gynaecologist.

[wobblybee Administrator Pioneer]

🤔 According to info for the medication..symptoms should improve but it may take up to 4wks. For peace of mind, discuss this with your GP.

nhs.uk/medicines/clobetasol...

[Brambledoggy]

I’ve been recently diagnosed with LS (perineum) and used Dermovate for over a month, symptoms pretty much gone, but absolutely convinced it’s created post menopausal bleeding for me so have stopped using it to see if it’s coincidental or not. Bleeding started heavily after using it having not bled for nearly 3 years. I had no idea what my nightmare itching at night was, presumed it was yet another menopause symptom. It’s not a nice thing to deal with. Persevere a bit longer and if no joy, get back to the GP.

[moo196]

I was recommended to use betnovate Rd twice a week after getting things under control.plus a morning and evening dollop of epaderm ointment (about a teaspoon full) on the area to moisturise and protect it. Plus fortnightly fluconazole because LS and thrush are often found together.

[Farrugia]

Hello - I had to initially use Dermovate for longer than recommended to begin with and then I gradually tapered down to twice a week. When things are really good I might only use it once a week but a lot of women are recommended to use it twice a week as a maintenance dose. It’s really good to use a good moisturizer after every toilet visit. Avoid all fragrances in anything you use egg toilet paper, laundry wash for knickers. I’ve found reducing sugar in my diet really helps too. If peri or post menopausal then vaginal oestrogen can really help. If you do Facebook there’s a really good private group called Lichen Sclerosis- sclerosus uk group for women. (Or something like that)

[lastofthemohicans in reply to Farrugia]

Hi this seems good advice. I have lichen sclerosis and am using the steroid cream prescribed by a gynaecologist. Have you any more advice on what l can do to reduce the symptoms. I do not have any itching just soreness.

[Farrugia in reply to lastofthemohicans]

How long have you been using the steroid? I found it took a while for it to work. You could try using a peri bottle - this is a water bottle that you use after going to the loo to wash off the pee because urine can aggravate LS. It feels like a bit of a palaver to begin with but I find it really helps if I'm in a bad flare and you soon get used to it. Trickier when you're not at home though. I find it really important to avoid fragrance and chemical as much as possible. Bamboo toilet paper tends to be better because they use fewer chemicals in the manufacturing process. As well as avoiding sugar, I try to avoid chilli and alcohol because these seem to make mine worse. A lot of it is trial and error - finding the best moisturiser for you. A lot of women like using castor oil, I like almond oil or apricot oil. I hope you can feel less sore very soon. It can get better but I find you just have to be diligent doing all the things that help.

[lastofthemohicans in reply to Farrugia]

Hi l have been using it for about 4 months and have reduced usage on the advice of the gynaecologist. Have your symptoms reduced and how long have you had the condition ?

[Farrugia in reply to lastofthemohicans]

I was diagnosed about 7 years ago though I think I'd had it for much longer. Mine got really bad when I hit peri menopause and menopause. I've found hrt and vaginal oestrogen really helpful. I don't know how old you are but that might be something worth considering if it could be a factor. Mine initially took ages to get under control, I'm sorry I can't remember how long but I remember I used the steroid for a bit longer than usual. Then it calmed down and wasn't too much trouble for several years. It came back when I moved and I didn't realise the washing machine I was using didn't rinse very well. It then took quite a while to get it under control. I then had to go back to washing knickers by hand in pure castille soap, rinsing really well, using a peri bottle, watching my diet as well as using the steroid. Do you feel like the steroid is helping you? I find Dermovate ointment is the best one for me, I've been prescribed the cream sometimes and for me that increases the irritation. Everyone is different though. Stress is also something that can make it worse - avoiding that is easier said than done. Do you do Facebook? There is a group called Lichen Sclerosis-sclerosus UK Group for Women. It's a big active group, there is a lot of information (pinned posts at the top of the page.) I found a lot of information on there and one thing I learnt is that everyone is different and not all women respond to the same things in the same way. It is generally a supportive group but I find I limit my use of it now because it can be a bit negative. It might be worth you having a look and even posting on there. I'm so sorry this is happening to you but it can get better. It takes time and unfortunately there's no magic bullet, for me I have to be diligent about all the things I've mentioned and then it's ok. Good luck! X

[lastofthemohicans in reply to Farrugia]

I’m 63. Thanks for the advice. The Dermovate cream is helping. Luckily l was diagnosed at a fairly early stage. I did look at Facebook but found it very negative.

[Hackne]

i also take a daily hayfever tablet and that helps calm the itching. I used dermovate for a while then it stopped being as effective. Go back to your GP - there are one or two other things to try.