lichen sclerosis

Happy New Year to everyone also! I suffer with LS also and I was diagnosed with it when I was 62. I went through 2 biopsies and was a little frightened at the beginning because I have breast cancer and I was fearing the worst. The cancer medication I take even makes the LS worse because it prevents estrogen being produced, so I am even drier and more inflamed than ever! On top of that I have psoriasis and RA.

I use a doctor prescribed cream that helps very little. If anyone has found any real relief using anything other than prescription creams, please let me know. Your companion in the LS battle!

Hey everyone just been reading these posts im 21 was diagnosed with ls wen I was 19... it has totally ruined my life... ive tried every lotion and potion going non worked.... currently on lidocaine and taking nortriptyline for nerve pain due to vulvadonyia through having ls.... I have no labia and narrowing and scarred everywhere... I cant have sex and im in constant pain everyday... dermovate started to thin my skin to the point its like tissue paper.. im on a lesser steroid because of this but I now have depression through living with the everyday... im waitin on an operation to open me up a bit..its absolute hell and ruins all aspects of my life...its hard to see the light at the end of the tunnel anymore....was just wondering if anyone has had it similar to me and if there is a light somewhere...

Thanks H

Hi Helen, so sorry you are having such a hard time of it. It is a beastly disease and unfortunately there aren't many people who know about it, including doctors! There is always light at the end of the trunnel so please do not despair. I use dermovate a lot and am constantly worrying about the thinning of the skin, but it is the only thing that gives relief. I can't have sex any more either, which must be a trial for my husband. I did think about going to Italy for stem cell treatment, but chickened out in the end, selfishly! Take care!

Horses

Hiya thank you for your reply... I must admit I have a great dermotologist and fynae that I see together n they boh work together to help me... but its just so severe that therz only so much they can do.... they r trying to control my pain before the operation at the moment.... the stem cell thing therz a better one in beverly hills it uses the stem cells from the fat in your body and injects it... therz a video that shows you how they get it al preped n stuff.. also its the most detailed page about lichen sclerosus ive ever read... from down to factor of where it could potentially come from to telling you that dermovate is a vicious circle and only does control symptoms n does nothin really for the ls... its calles the stem cell lift procedure for lichen sclerosus.... I have a partner n constantly trying to keep my realtionship alive its very dificult...

Thanks helen

Helen, my heart goes out to you it really does. The LS problem was totally ruining/controlling all aspects of my life and feeling very depressed. It is good that you have been diagnosed. I have spoken to all the female members of my family about this so they are aware. My daughter during a routine check was concerned she might have it and mentioned this to the practice nurse who told her at 21 she was too young to have anything like that!!! It's a good job that there are sites like this! I know it's easy to say, but chin up things will get better.

TH.

Hi All.

Helen you are extremely unlucky to have this thing so young, though I know even children get it. Your "architecture" sounds like mine. I was once afraid of having that operation to open the entrance area up but got useful advice which I have used successfully ever since - look online for dilators, Helen !

Okay I just use the smallest one about once a week now but it has kept me out of hospitals. some women have graduated to the wider ones thus enabling them to have penetrative sex. I am 75 and happy to forego sex now, but there is the light at the end of your tunnel.

Have your medical people said anything about how they will keep things open after the op, to stop it fusing again?

Looking back about eleven years my LS was much worse then and has settled down a lot so that I only sometimes get really bothered by it,. I have gone from using dermovate/ clobetesol twice a day to once every four or five days, just a small pea sized amount. Okay, sometimes it was two steps forward and one step back, but I have got here. Skin not thin. I have a slightly warm bath as soon as possible after the very first "tickle/itch" and use the ointment within 24 hours before the LS gets too excited then doesn't want to leave!

Hopefully yours will also become more manageable as time goes on.

As Thighs says, things will get better.

Hey thunder thighs, I kinda knew when I was 16 I wasn't normal drs all told me it was in my head no one believed me, I can well believe a practice nurse told ur daughter that because they haven't got a clue... All my family know but no one ever understand when I say im in constant pain from vulvadonyia... Its really hard... And hoodie I've use dialators I got them from my gynae but I can't use them now because of the pain it causes but they didn't really work either... Its hard to look at the bright side coz for me there isn't a one... Suppose all part off the depression and everything else... Life's just a struggle...

Helen

Hi all,

Just came back from a visit to the nurse, as I needed vaccinations for a holiday abroad. She was telling me to cover myself in suntan lotion and then spray mosquito repellant over that! I told her my skin was dodgy and that in fact I had LS, to which she replied "what is that?". This is what find the most depressing that people in the medical business do not know about this, ion my opinion, serious disorder!

Horses

It's true,Horses. we are a bit "on our own" with this. I suppose really though we can't blame the nurses as it is either rare or rarely spoken of.

thanks to the internet we can learn what help there is and support each other. What must it have been like for our grandparents and before, I dread to think, so in that sense we are definitely luckier. Luckiest of al is if somebody found a cure!

Hi everyone.

I was just told I have LS and I'm 28. My husband has been super great! Anyway...I was hoping for some positive stories about still having a healthy sex life. We were having sex about 3 times a week...will I still be able to do this?

And I am on the creams but not sure if they r working....how long till you start seeing improvements.

Lisa

Hi Lisa hope you can get your sex life on the go again soon. Really it depends how bad your LS is as I understand some of us get it worse than others.

What cream are you using, the clobetasol?

That's the strong steroid one.

Many women do manage to carry on having sex, having babies too, especially if their partners are the understanding kind . Using things like emu oil can help keep the area more supple. I find that the dermovate/clobetasol stops the itching, therefore the harmful rubbing and scratching, but one or two of the other posters might have better tips on lubrication for sex than I can give.

Joodie, hi. Thank you for the response! Yes those are the creams I am on. Clobetasol in the morning and at night. I use the derm mid day. But I've also been applying vitamin E oil down there once a day too. Anyone else do this?

My husband is super supportive... And so are my mom and sisters. I also have a 9 month old daughter who is a wonderful distraction.

I started eating the PALEO diet? Has that help anyone?

Hi I was found to have LS last summer after I thought I had thrush. I am 53 and had a very activate sex life with my husband ( 30th anniversary this week). I saw a consultant and went through 3 months of steroid creams and everything seemed ok. Now a few months after I have my first attack. It hurts when we have sex and I am beside myself as part of what we enjoyed is under treat. I am trying to be positive and my husband is so supportive but can anyone help me or recommend me with thing that I could do. I do not use soap, shower gel, bubble bath etc - only use no soap products. Clothes washed in non bio . . .can not think of anything else. Thanks for reading this = good luck to everyone else xx

Hi anyone who is looking at this website this year. I was really pleased to find a forum about LS. I have been a sufferer for 7 years now. I thought I would enter a post so that maybe a new conversation could start. I am examined by a dermatologist twice a year and when the LS is active I am checked every 3 months. The main thing I have learnt is to use the Dermovate OIntment (Not cream) every other day when things are active and to use Epaderm ointment liberally several times a day (every time I go to the loo). I have bought a small container which I fill with Epaderm and use when I am out. I have found that babywipes for sensitive skin do not aggrevate the LS and will help keep the urine off my skin which definitely aggrevates the condition. Keeping clean and moisturised is the key. You can use the Epaderm liberally when showering to keep shampoo etc, off the site that is affected. LS can affect the skin anywhere and is usually identified by silvery cigarette paper like patches, but can also be white lumps on the skin.

I have also discovered that LS (an auto immune disease) can attack the healthy insulin producing cells in the body which can result in development of Diabetes and also there is a link to Thyroid problems. I would be interested to find out how many people out there also have these problems. I have also developed Vertiligo on my arms which are now blotchy brown and white which is apparently common with people with LS. I am a white female who used to have a naturally dark complexion, the brown is the natural melanonin in my skin. I used to tan really easily and hardly ever burnt, now I do not like going in the sun as I burn easily on the vertiligo patches.

I have also found diet does play a role in this and I try to eat healthily. I was interested to read about citrus fruit aggrevating it. I will try this. Maybe that has been the unknown trigger for me as I don't often eat citrus fruits anyway so it won't be a big miss.

I hope this post will be of help to others as I have spent many years researching this condition and looking for ways to control it. It isn't a death sentence but it does affect you greatly particularly in your private relationships. I have been lucky to have a very understanding husband.

Hi I am going to try this again my last post disappeared. I have been an LS sufferer for the past 7 years. I have been researching this problem for most of those years. I am examined by a dermatologist every 6 months or 3 months if it is active. I have had it severe and now have it well controlled. I use Dermovate ointment (NOT CREAM) every other day and Epaderm liberally every time I go to the loo after I have cleansed with babywipes for sensitive skin which do not seem to aggrevate the condition, whilst urine does. Do not flush the wipes though as they can block the systems. I dispose of them with sanitary bags along with the liners I wear to protect my underwear, which also get changed every loo visit. I use Epaderm to wash with which is lovely. This greasy ointment mixes with water and becomes a lovely gentle soap, it can also be applied liberally to the genitals before a shower to protect them from shampoo and shower gels. I have found it better to not use the latter.

I have also discovered that LS (an auto immune disease) sometimes attacks the insulin producing cells in your body which can cause Diabetes to develop. It is also possibly linked to Thyroid problems. I have also developed Vertiligo which is also common in LS sufferers. I am a white female who used to tan lovely never burning, but now I burn easily where there are white patches.

LS can affect all parts of the body causing white silvery cigarette paper like patches on the skin, or white lumps that have a silvery effect. It affects both men and women. I am lucky that I have a friend who also has the condition and we can talk to each other about problems and do help each other. I can remember how we often commented about similar medical problems that we had, not realising that they were connected to the LS we suffered.

As this is not a curable condition at the moment and is obviously missed diagnosed for many people causing untold misery for them I would love it to be advertised. I itched for many years causing lots of damage to myself without realising that there was a cure for the itch. I thought it was because I was dry and just moisturised. That was not enough but I was too embarrassed to seek help about it.

I hope this post might help others unfortunate enough to suffer this condition. I have found the knack is to remember that I am not alone. One specialist I spoke to said that of all the people in his waiting room 1 in 3 probably had the condition. That was a surprise to me.