lichen sclerosis

[SusyQ231]

Hi, does anybody have vulval lichen sclerosis. I have it an would like to know how to treat “flare ups”

[moo196]

hello..... has your specialist not recommended what you should do?For myself it's just a matter of additional higher strength steroid cream for a week or so

[SusyQ231 in reply to moo196]

Thank you, no I have just been on the same strength but I am seeing my GP on Monday and will ask her. I have been seeing a hospital consultant regularly but for some reason I seem to have been overlooked and not had an appt to see him for eighteen months despite phoning the central booking system. They say I am “still on the list” so that is why I am seeing my GP and to ask her to chase this up with perhaps a re-referral. I am on Dermovate ointment, 0.5%.

This condition is a nuisance, both medically and mentally.

[moo196 in reply to SusyQ231]

I use betnovate Rd twice weekly and full strength daily in a flare up (only once or twice a year).And liberal amounts of epaderm ointment morning and evenings. Are you using this too?

Yes, it's a devastating condition but manageable with the right treatment.

[SusyQ231 in reply to moo196]

I use Dermovate twice weekly and daily during a flare up. I don’t use anything else and have just looked up Epaderm on Google so see that you can get it in Boots so will try it. I also am careful with my underwear and only wear 100% cotton from M&S. Yes, it is a devastating condition and can cause emotional stress within relationships. It’s one of those things that unless you have it people just think it’s just vaginal dryness or just vaginal itching. I know there is a group on Facebook which I don’t use. Thank you so much for your help.

[moo196 in reply to SusyQ231]

you must use a heavy duty barrier ointment daily for the skin. Ointment is better than the cream.Also I was prescribed fluconazole fortnightly as thrush goes hand in hand with LS sadly

[SusyQ231 in reply to moo196]

Hi I use the Dermovate ointment on repeat prescription as my GP recommended this as better than cream. That is all I have been prescribed. I have had Flucanozole but not on a regular basis. I am definitely going to try the Epaderm ointment and will get from Boots. I really appreciate your posts so thank you again. It is great to talk to someone who really understands.

[moo196]

Good luck with this.PM me if you want to chat

[SusyQ231 in reply to moo196]

Thank you I will let you know how I go on. How do you PM I won’t bother you too much only if I really feel I want to be private.

[Exfed007]

My doctor prescribed a desamide cream vs Premarin which I objected to over its sourcing. It helps.,

[Farrugia]

Hi SusyQ231 - sorry you're having a flare, I have LS too. When I have a flare I have to be really careful about everything - I wash knickers in unperfumed castille soap and rinse them really, really well. I use dermovate ointment (better for me than the cream) and moisturise frequently either using something like Epaderm or a good quality oil eg organic almond oil. I find it's best to avoid any products with fragrance in or with too many ingredients. I find it also helps to avoid sugar and alcohol. My last flare started after I moved to a new rental and I hadn't realised that the washing machine wasn't rinsing very well.

Are you on Facebook? There is a private group called 'Lichen Sclerosus- sclerosis UK support Group for Women'. It's a wonderful group, they have a lot of information files - I've learnt so much more about LS since joining, much more than I've been told by any doctor. It's also very supportive which has been really helpful because I think it's very upsetting when you're in a flare.

One thing that is apparent from the group is that not everyone reacts in the same way to topical treatment so it's a case of finding what works for you. Women who are perimenopausal or menopausal also find that oestrogen cream or pessaries can be really helpful.

I hope you can find some strategies that work for you soon.

[SusyQ231 in reply to Farrugia]

Hi and thank you so much for your advice. I buy 100% cotton knickers and wash by hand and rinse thoroughly. I also use Dermovate ointment and am going to try Epaderm, another lady on this site recommended it. Do you wait a while after using the Dermovate and do you use most days or only when you have a flare up? I think I have it under control now, I think if I am stressed it causes a flare up.

I used to use Facebook but came off it as I found I was using it to much in general. I might rejoin and have a look but don’t really want to join for anything else except to look at the group you mention.

Once again thank you, it helps so much to be able to talk to someone who understands the condition. x

[Farrugia in reply to SusyQ231]

I quite understand about Facebook, it's so hard to just keep to only the things you want to see. I will have a look on the page and see if there are resources you can find elsewhere online.

I think the main advice is use Dermovate twice a week as maintenance when you aren't in a flare. If it flares up then you can go back to using it daily for a while until it's calmed down. The advice is to rub the steroid in well and then wait at least 30 minutes before you apply anything else. I would probably just wait until the next time you go for a pee before applying a moisturiser.

Using an emollient or moisturiser like Epaderm is really helpful and the advice is to use it after every toilet visit. Some women find using a peri bottle very useful - this means you can wash urine off immediately which is helpful because it can aggravate LS. I didn't know about this until I read it on the Facebook page recently and it has been so helpful for me when I'm in a flare. If you're very sore you can also put a bit of epaderm on the loo paper before you wipe.

You're right about stress, it definitely makes mine worse too and it's such a hard thing to manage. I would say try and do some nice things for yourself if you can (although for me that doesn't mean a load of sweet things as that makes my ls worse!)

I hope you have a better day today. I've been in a flare for quite a while but it is much better now after a few weeks of being very diligent. There is hope! X

[Farrugia in reply to SusyQ231]

Dr Jill Krapf is a specialist and researches LS. She is recommended on the Facebook page. The files on there are pdf's so I don't think I can share on here but I've found this information from her on this page.

lssupport.net/how-are-repro....

[SusyQ231 in reply to Farrugia]

I have ordered some Epaderm ointment due to be delivered today so am going to use on a regular basis. I also used the link for Dr Ktapf. Lots of useful information especially how to use Dermovate properly and bathing. I feel a bit better now, itching seems to have died down so feel in a better place.

Your replies have really helped it’s really good to be able to talk to someone who understands. So thank you again.

[Farrugia in reply to SusyQ231]

I’m so glad it was helpful. I was hardly given any information by my doctor or when I was diagnosed. Feel free to message me any time. It’s such a difficult thing to manage and can be very upsetting. It can get better though. I’m in the process of moving and will be going between two houses for a few days - special plans to have some emollient, Dermovate etc etc in both houses. What’s palaver. Hope yours continues to improve. Xx

[SusyQ231 in reply to Farrugia]

I wasn’t given any proper information either. I found a good site called LSSN - lichen sclerosis support network. It’s very good, it’s in USA. It’s run by a lady who has LS and has members and volunteers. I know we have Facebook but not a registered site. You can use the site and don’t have to donate if you don’t want to.

We don’t seem to have anything like this here in the UK.

Good luck moving house x

[SusyQ231 in reply to Farrugia]

Hi again, I’ve just had a more detailed look at the link to Dr Krapfa and noticed it is on the LSSN site I said I had seen.

[Farrugia in reply to SusyQ231]

Ok thanks, I will have a look at that site too.