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Author Topic: Am I the only person here with Lichen Sclerosus?  (Read 45392 times)

Melbury

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Re: Am I the only person here with Lichen Sclerosus?
« Reply #15 on: March 19, 2012, 06:10:43 PM »

hi,I.m new to this site,but have visited several times.I too,have LS,diagnosed 12 years ago.It usually flares up 2/3 times a year,but as soon  as I feel it coming on use the cream off dr. and stops it.I.m now in the height of the menapause,lack of sleep,night sweats,daytime hot flushes and sooo dry down below.I found I had to use my cream for Ls a lot more to see if it would ease it.But after a recent visit to dr,am now trying vagifem.I wasnt sure if the Ls  flaring up more or if it was problems with the menapause.So far it seems to be better,but time will tell.

Hello Mae, thank you for posting. 

I am having another flare up and so will use the cream again for a few days.  It is a bit scary isn't it using strong steroid cream down below?  Sorry to hear that you have been suffering from it for 12 years. I was reading case histories on another site and was shocked that many people get LS in their 20's and 30's -  must be absolutely terrible for them.  So I am trying to have positive thoughts for a while.
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mae

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #16 on: March 20, 2012, 11:27:11 AM »

you.re right,it is scary using such a strong cream,but after 12 years I,ve learned to recognise when an attack is coming on and now use a milder cream.The only problem now,is with the menapause problems down below,its hard to tell,because symptoms are similar.I,ve recently tried vegifem but had to stop using it.Had bad problems with it ....very bad migraines with visual disturbances.I stopped using a week ago and now the soreness and itching has returned.There must be something else I can try?
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Suzi Q

  • Member
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  • Posts: 7474
Re: Am I the only person here with Lichen Sclerosus?
« Reply #17 on: March 22, 2012, 11:59:58 AM »

Ovestin and Ortho gynest see GP
I posted on here but on the wrong post
Im 99.9% certain Bobbles has Lichen its not a sex thing its not contag anyone can get it its auto imune
I looked cos i was worried about myself and up came piccies of everyone from babies onwards on diff parts of the body
Low and behold up comes 6 pictures of mens male parts and low and behold theres Bobbles LOu LOU(ok not his)
He was told he had Thrush for 18 bloody months he used cream he was away for 2 weeks so no sex it was still there
His scalp is covered under his hair with big red patches raw looking on the edges iswhite scaley skin
Hes gone on about dandruff used everythig he could think of and more cos it falls like snow horrificly bad its like powder
Last night I got the scalp massager and the skin that fell off his scalp  was quite scarey the amount and then I looked at his scalp I could see huge red raw patches and its starting to get red on the back of his kneck
Hes not got Dandruff it looks exactly like the pictures of Lichen schill thingy

I think use the vagifem and cream on the outside thats what your doing yes?
Im sending humungus higs OK xxxxxxxxxxxx
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Taz2

  • Member
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  • Posts: 26687
Re: Am I the only person here with Lichen Sclerosus?
« Reply #18 on: March 22, 2012, 04:59:24 PM »

Are you sure that it's not Psoriasis Suzi?

Taz x
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Melbury

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #19 on: March 22, 2012, 08:48:57 PM »

Ovestin and Ortho gynest see GP
I posted on here but on the wrong post
Im 99.9% certain Bobbles has Lichen its not a sex thing its not contag anyone can get it its auto imune
I looked cos i was worried about myself and up came piccies of everyone from babies onwards on diff parts of the body
Low and behold up comes 6 pictures of mens male parts and low and behold theres Bobbles LOu LOU(ok not his)
He was told he had Thrush for 18 bloody months he used cream he was away for 2 weeks so no sex it was still there
His scalp is covered under his hair with big red patches raw looking on the edges iswhite scaley skin
Hes gone on about dandruff used everythig he could think of and more cos it falls like snow horrificly bad its like powder
Last night I got the scalp massager and the skin that fell off his scalp  was quite scarey the amount and then I looked at his scalp I could see huge red raw patches and its starting to get red on the back of his kneck
Hes not got Dandruff it looks exactly like the pictures of Lichen schill thingy

I think use the vagifem and cream on the outside thats what your doing yes?
Im sending humungus higs OK xxxxxxxxxxxx

Hi Suzi,

Has Bobbles been to see a doctor about this? I agree with Taz, it does sound more like psoriasis.

I was taken off the Vagifem when I started on Oestrogel, but to be honest the Vagifem didn't stop the stinging feeling - it is not an issue of dryness, it is just a little patch of soreness that won't go away.  I will have to keep using the steroid cream intermittently to keep the LS at bay and hope that eventually it just disappears - fingers crossed.

Hope you are well, keep nagging Bobbles to get himself sorted out, drag him to the docs if you have to!

Mel x
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Melbury

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #20 on: March 22, 2012, 08:52:22 PM »

you.re right,it is scary using such a strong cream,but after 12 years I,ve learned to recognise when an attack is coming on and now use a milder cream.The only problem now,is with the menapause problems down below,its hard to tell,because symptoms are similar.I,ve recently tried vegifem but had to stop using it.Had bad problems with it ....very bad migraines with visual disturbances.I stopped using a week ago and now the soreness and itching has returned.There must be something else I can try?

Sorry to hear that you are having problems and have had to stop using Vagifem.  I was on it for about a year or so and thankfully never had any side effects, but then it didn't sort out the sore bit either :(  I know it is difficult trying to work out exactly what is meno related and what isn't - to keep it simple, I tend to blame everything on the meno ::)

Hope you feel better soon, are you going back to the docs to try something else?  Have you tried Oestrogel, I find that very good.
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mae

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #21 on: March 24, 2012, 07:30:33 PM »

I.m going to have to try something,will go back in a week or so,to try something else.Let the  side effects of vf to  die down first.
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vera

  • First Flush
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  • Posts: 8
Re: Am I the only person here with Lichen Sclerosus?
« Reply #22 on: September 07, 2012, 11:04:39 AM »

Hello Melbury, Yes I am a fellow sufferer, I've just been diagnosed and am miserable too  :'(
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flushtered

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #23 on: September 07, 2012, 04:48:21 PM »

Hi Melbury and Vera
I have Lichen Sclerosus too, diagnosed two and a half years ago, thought I had thrush that wasn't responding to anything.  Bit depressing being told about it, but the Dermovate works well for me and I was advised to wash with Dermol lotion as anything perfumed stings.  I get flare-ups, but not as bad as it was originally.  Lately, I was worried that I was getting tighter and drier, but now think that's peri-meno mixed in.  I try not to wear jeans much now and opt for soft cotton trousers when in house. 
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vera

  • First Flush
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  • Posts: 8
Re: Am I the only person here with Lichen Sclerosus?
« Reply #24 on: September 08, 2012, 01:22:48 PM »

Hi Melbury and Vera
I have Lichen Sclerosus too, diagnosed two and a half years ago, thought I had thrush that wasn't responding to anything.  Bit depressing being told about it, but the Dermovate works well for me and I was advised to wash with Dermol lotion as anything perfumed stings.  I get flare-ups, but not as bad as it was originally.  Lately, I was worried that I was getting tighter and drier, but now think that's peri-meno mixed in.  I try not to wear jeans much now and opt for soft cotton trousers when in house.

Hi flushtered,
Thanks for your reply, we have the same symptoms and I too am using Dermovate cream which has helped and also Dermol for washing, same as you though it's the inside that's the problem.  Can you message me?  Thanks Vera x
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flushtered

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #25 on: September 08, 2012, 01:39:08 PM »

Hi Vera
We can't do personal messages until we've got 100 posts.  But I am also on the forum I've linked below, as itchyperson and you can do personal messages there :  http://www.mdjunction.com/forums/lichen-planus-dis ...
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Eddie

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #26 on: September 08, 2012, 10:02:07 PM »

My gp thought I had this too and prescribed dermovate cream. I'm not convinced, I know I seem to get thrush every month? But I get white/blueish marks and very tender thin skin. Already on full hrt plus v/f.
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flushtered

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #27 on: September 09, 2012, 01:47:50 PM »

To me, the difference between the two is that with thrush it's inside I get it and with LS it's on the outside.  I thought the LS was causing VA which I now think is due to peri-meno though.
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Eddie

  • Guest
Re: Am I the only person here with Lichen Sclerosus?
« Reply #28 on: September 09, 2012, 02:10:22 PM »

Mines is never inside, all always outside, itchy, tender, small amount discharge, not even very like cottage cheese, thin skin that splits easily, but i do get like a film, blueish tinge on my.......just realised were not in private lives.
Eddie. x
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vera

  • First Flush
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  • Posts: 8
Re: Am I the only person here with Lichen Sclerosus?
« Reply #29 on: September 11, 2012, 10:29:11 AM »

Mines is never inside, all always outside, itchy, tender, small amount discharge, not even very like cottage cheese, thin skin that splits easily, but i do get like a film, blueish tinge on my.......just realised were not in private lives.
Eddie. x

It's OK Eddie, we are all women and all in the same boat sadly!  :(
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