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Lichen sclerosus

(6 Posts)
Theone Thu 16-Sept-21 12:54:37

Good afternoon everyone. Yesterday I was given a surprise diagnosis of lichen sclerosus (saw Dr to discuss another matter) and was prescribed a strong steroid cream to start tonight. I wonder if anyone here has used Clobetsol Propionate to good effect? My symptoms are driving me crazy! I've been reading about the link to cancer with this condition but I believe the risk to be low so I need to get past that and focus on the benefits that may come. I have to see the Dr again in 4 to 6 weeks and have regular monitoring thereafter.

Susan56 Thu 16-Sept-21 13:00:46

I find the clobetasol very effective.Just use it for flare ups and use cetraben the rest of the times.I am under consultant care for this condition and have had several biopsies so if the clobetasol doesn’t work please go back to your dr.Feel free to message me if you have any questions.

Luckygirl Thu 16-Sept-21 13:27:34

My DGD had this - she got used to dealing with flare-ups herself. Thankfully it seems to have settled now in her teens.

Theone Thu 16-Sept-21 14:50:21

Susan56 thank you so much. That's very reassuring. I'm glad to hear that you receive consultant care. I am to be referred if the first 3 months treatment has little or no effect. I remember having a biopsy a number of years ago and wouldn't want to go through it again but I know it may become necessary. I shall certainly message you if I have any worries! Thanks again.

Luckygirl, for your poor DGD to have suffered with it must have been distressing for her at the time. I read that this usually presents itself before puberty or post menopause. She obviously persevered to get it under control!

chickkygran Thu 16-Sept-21 18:17:12

I was diagnosed just over 2 years ago. Like Susan56 I use the clobestol for flare ups now that it is under control. Your GP might have advised you to use it twice daily tapering down after a month then 2 months so that you aren’t using daily but about twice a week to maintain the condition. There is an excellent FB group, if you are on FB. There’s lots of advice. I use emulsifying lotion in the shower, avoid every day shower gels, soaps etc as they can aggravate. I also buy Cheeky Panda toilet paper which is free from chlorine bleach, fragrance, pesticides. Likewise if you use feminine protection buy ones free of chemicals. In a bad flare up it does drive you crazy! I attend Guys Hospital for annual check ups atm. Hope the clob sorts it out for you ?

Theone Thu 16-Sept-21 18:53:47

Thank you chikkygran. There does seem to be good follow up for the condition. I've been told to use once a day for 1 month, alternate days in 2nd month and twice weekly in 3rd month. I will be checked halfway through that regime if I understood her correctly. Thanks for posting.