anyone know how to help itchy patches?!

Where are your patches? For those of us who have LS that affects the vulva the itch is helped by Dermovate which is a powerful steroid ointment or cream. I think Eumovate is another similar drug.

i use an ointment as i found the creams clogged and didnt help as much, many on the site use a fatty moisturising cream to keep the area soft and lubricated. Surgery is normally used when the fused skin restricts normal function.

often scar tissue following and operation is a worse option than the original complaint -but it does depend where you have the affected area

Best of luck

Sue

U can get Epaderm emollient prescribed for you. The trick is to not wash with soap, shower gel or anything else that has perfume. Use the Epaderm, or some use Hydramol, as a moisturiser and a soap as it mixes with water to make a lovely soothing soap. Then after washing with it I use it to moisturise as well. Use the Dermovate or what ever steroid you are prescribed as instructed, If you itch or are in pain then use it until it calms down. Let the steroid have at least an hour to work on the area before you use the Epaderm. After going to the toilet make sure you remove any trace of urine as this makes things worse. I use sensitive baby wipes and then dry with paper and then moisturise every time I pee. I know it is a hassle but it is so worth it. No itching, and no active LS at present. Good luck Lara. Follow the link for Lichen Sclerosis. Lots of advice on there.

Eumovate is the mildest of the steroid creams and may be what has been tried first to see if it works, rather than starting you on a stronger one. Eumovate didn't work for me and when I went back to the vulva clinic I was prescribed Betnovate, which is the next strength up and worked straight away. I'm fortunate that I haven't had to go to dermovate, which is much stronger.

The emollient which has worked magic for me is cetra ben, which is prescribed by my GP along with the betnovate, and which I just use in the morning after I have washed and has helped to keep me itch-free for a couple of years now, just using the betnovate once or twice a week. I only wash with water, nothing else.

We're all different and different products work for each of us - keep telling your clinic or GP of your problems and they should prescribe you something different.

I had suffered with itching for 12 years can't believe I put up with it. One of my friends is a nurse said I may have an acid bladder so looked on Internet and it suggested vitamin B would help reduce acid in urine and take 1 a day because urine definately aggravates the LS. By chance I had to have a smear test which I thought was a fuss cos I am 70 but as soon as the lady saw how sore I was she told me I had LS and arranged for me to see a consultant within a couple of weeks who confirmed it and prescribed Dermovate and Hydramol from which I have had instant relief, so glad I was called for the smear test which was because I kept getting dodgy results but think it was due to the LS. Another symptom I had was like a jabbing sensation in the uretha which would make me jump which has also disappeared , has anyone else had this problem? Back to consultant on Monday . Will post what she says .

Hi Holiday girl,

This is a subject that most will not like to talk about. I am going to talk as open as I can as this might help others. Yes I had the same pain, later I noticed a different deep pain in my clitoris which lasted for about 2 weeks. I went for an exam and during the exam my dermatologist told me that my clitoris was absent. I was so shocked. Well I obviously examined myself later that day and sure enough things have changed and the clitoris is not visible but I think that the skin has fused over the clitoris as I can still feel something there. I must check more often. That change took place in one month. I have managed to treat it myself as I had increased my use of the clobetasol to daily when the pain started and weaned off it again as it calmed down. I had no active LS at my exam, so I must have caught things and stopped things getting much worse.

I know this is really hard for some to talk about so I hope that by being so honest it will help others and prompt them to examine themselves more often and not frighten you all too much. It sounds a lot worse that it feels. Remember if things change down there or you get severe pain get a second opinion to ensure that nothing serious is going on. Good luck with your exam.

My clitoris has 'disappeared' too as the skin has fused over it, but it has not lessened the sensation at all, in fact if anything it is even stronger. As my itching and soreness is well under control with betnovate and cetra ben I have decided not to worry about it! I have a feel of the area every day when I put the cetra ben on, and have a regular look at things, and get my GP to have a look every so often, so reckon nothing serious is going on.

My patches are on the vulva, as my dermatologist said that the itch around the outer of my vulva isn't as severe as the itch on the patches, that's why he prescribed my eumovate, I am going to see him in 10 weeks to see my progression so should I ask for a stronger steroid to help the patches? some of them are raised and some are just look like a scar, but I'm worried he may suggest not to because the itch on the outer of my vulva isn't as bad?

Just got back fron hospital to see consultant and they had results of biopsy which confirmed it is LS I am still itch free which is lovely and will continue using Hydromol every day and Dermovate a couple of times a week. Will be called back in 6 months for a checkup. Off tomorrow to Portugal for a week and hopefully itch free x

That is so sad that you do have LS but good news that you are itch free. You can keep it that way. I rarely itch and when I do it is when I have been a bit lazy using the epaderm. Have a brilliant time Holiday girl.

Lara don't ask for stronger steroid ask for a different ointment if this isn't working. Ointment works better than cream. Different ointments work better for different sufferers. You should first try what he has given you and give it time to work. Regular treatment with steroid and lots of Epaderm, or whatever moisturiser that you get for the LS every time you pee. I usually find it takes up to 2 weeks to find an improvement when bad but normally it gets better in a few days. It is really made worse by urine being in contact so keep as clean as possible and change pads (if u use them) regularly or as soon as there is any urine on them. Carry sensitive skin baby wipes for cleaning when out. Or you could try a small squirty bottle with water to spray over the area to rinse off the urine. Dry by patting not wiping.

Try not to worry too much. You will get used to all of this. At least we can talk to each other on this site.

I use Eumovate which suits me

But my gyneo lady said try double Base Gel for washing and wiping which I have been using for a little time now

This is moisturising protective hydrating gel

It can be used for skin conditions that itch or are inflamed

I receive mine on prescription

But I do know Amazon sell this also

It is also available via chemists (UK)

It can be used on babies adults oldies like me

It can also be used on the body as a moisture cream

But I find to wipe vagina with this to clean and after each urination keeps all in check

I also use this as a face cleanser and moisturiser Hope this is of some help