Lichen Sclerosus :: Intense Itching - Chest, Back, Arms And Groin
Jan 17, 2016
I am at my wits end. I have been diagnosed with Lichen Sclerosus and it has spread significantly and rapidly over the last year. I have multiple patches on my back, chest, arms and groin. The itching is intense at times, annoying almost all the time. Dermovate and Nereson has not helped. Protopic has not helped and I believe has worsened the spreading? I have been prescribed antihistamines by GP but they don't even take the edge off the itch. Dermatologist just says "it might clear up, keep applying the dermovate". She doesn't seem to be concerned about the rate it is spreading. Going back to GP about the itching next week. I can't enjoy anything at the moment, even sitting and reading a book or watching TV due to the itching. I have a constant worry about the spreading - where will it ever stop? If ever. This is a living hell. Anyone else here suffering it with it in the same areas as me?
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I've had vaginal itching for around two years now, as with most posts I've read I've been told it's just thrush but then I've been tested for that twice now and both tests came back negative. The GUM clinic said it could just be an allergy or thrush of the vulva (if that is even possible?). I have no discharge, other than the normal. It's red near the labia but not exactly bright red. I have small spots but I've googled those before (I can't remember what they're called but they're normal- so google tells me anyway) and whenever I've had an examination then I've been told it looks normal and healthy.
The GUM clinic gave me some thrush cream that also had steriod cream in it and I used that for about six weeks and since then the itching has been much improved. I think it seems to get worse with stress. I don't have any lumps or any white marks or anything which people seem to say are symptoms of Lichen Sclerosus. The fact that it went away with the steroid cream would suggest it's some sort of allergy but I just don't know what to? I have noticed that if I wear no knickers (under a long skirt) then there is hardly any itching at all.
I am currently going through a panic of health anxiety so I can't stop googling these symptoms and it all seems to leads to some sort of cancer so I'm petrified it could be that.
I'm in the UK and I've booked a doctors appointment for Monday where I will ask to be referred because I've had enough of this now. I just wondered if anyone had any ideas or had been through similar?
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We are raw, irritated, red, have tears, hurt, sore, itch, and have white patches. We also have fusion and disappearance of some of our parts. Just by looking you can see it all happening except the fusing and disappearing parts. It seems adhering occurs when you don't know..it just appears one day. Is it occurring when we itch or when we are raw and irritated? Do the white patches causes the adhering and covering over our parts? Does the fusing happen at the white patches or can it happen anywhere else on the vulva where we don't have redness, white patches or itching ? Then do we use it all over the vulva when we are free of flare-ups and using steroid once week? When we are free of a flare-up where to we use the cream? Do we use it where we had the irritation ? Do we use it where the scars are and the fusing is even though we are flare free? I read we use the steroid to prevent further scarring and fusion, but I'm still not sure if the fusion is the result of the other symptoms and when we do maintenance with the steroid where do we put it?
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I'm 46 and have been diagnosed with LS for approx 8 months. Can't seem to get it under control and despite using hydro mol, and both steroid creams I find I am now in a worse state than I have been for sometime. In tears every time I go to the loo from pain both front and back. Can't use the steroids as I now have raw skin and it stings. Been recently on antibiotics and wondering whether this has had a worse effect although reading about this does not seem to cause a problem. I have scarring and the piece of skin between both areas in now extremely sensitive. Been to see doc and dermatologist but never seems to co inside with a bad outbreak. Haven't had sex for months now which is also depressing as worried about husbands need a even though he is very supportive. Just can't seem to speak to anyone who understands. I've also got vitiligo apparently this can be linked or is seen to be linked to LS as an immuno problem but nothing else. Can anyone help with any suggestions for relief?
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I'm a 20 year old university student struggling to cope with the constant pain and irritation of my eczema.
I get it all over my arms, armpits, neck, chest, the back of my legs and my wrists. Its scabby, sore and irresistible to scratch at. I have on too many occasions scratched it until i bleed but i really cant help it. I have had severe eczema all my life but in the past two years, it has really started to get me down. I have applied prescribed steroid creams, Hydrocortisone, E45, Doublebase.. showered and bathed in prescribed shower and bath gels and swallowed countless anti-histamine tablets in the hope of them taking away the itch and the urge to scratch.
I'm writing this as i am so fed up, just like the millions of others suffering from eczema out there, and hope that one of you out there can help me, or atleast give me some tips to reduce the irritation.
Currently i am applying Aveeno Skin Relief Moisturising Lotion after i shower. It does reduce the itch and calm my skin, but the redness and dryness returns when the cream is absorbed or whenever i start to sweat. I can't partake in exercise or sporting activities as i am scared, actual fear, of how itchy and sore my whole body becomes.
As i sit here repeatedly itching up and down my arms i'm hoping there is someone out there who can give me some advice, i've had enough of being embarrassed and fed up of my skin.
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Day 18 of secondary rash. Herald patch appeared about 3 weeks before rash appeared (thought it was just a harmless bit of dry skin!).
Secondary rash started on chest then over 1st week spread to neck, stomach, back, arms, thighs and groin (wonderful!). My goodness does it itch!
Went to Docs who said not to worry it's only PR and it should go away as suddenly as it appeared in about 8-10 weeks!!!
The itching was particularly bad on my chest and back so Doc advised using Aveeno body wash and intense cream as well as taking daily anti-histamine. The Doc also said not to run or exercise as overheating can irritate the skin - should also only take tepid showers/baths for the same reason.
Over the last couple of days the rash on my chest and stomach is less red and my skin has started peeling (a bit like after sunburn) and thankfully the itching has stopped where the peeling has started. I am hoping this is the beginning of the end!
It is the strangest condition I've ever heard of or experienced. The Doc said at least it wasn't shingles (as they 1st suspected), but on day 13 when the itching was at its worst and I thought I still had up to 8 more weeks of it I began to wonder if a shorter period of more intense pain/illness associated with shingles would be the lesser of the two evils!!
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I've struggled with intense vulva itching since i was 18 and now am 25 and it seems to be getting more intense and more frequent. The appearance of my vulva has changed. The labia minora looks stretched and purplish brown. The outer lips have shrunken somewhat. I am experiencing yellowish discharge and burning after peeing. Pee seems to aggravate the itching even more. I have been treated for uti s and for yeast infections with no luck. I have tried changing to cotton underwear, avoiding soaps, and try to stay dry though it is had since I always seem to have discharge coming out. Having sex definitely aggravates the itching as well. It feels liI'm I'm allergic to everything and it's very frustrating not to have any doctors give answers. They don't know what my vulva used to look like so they don't believe it's a serious issue but it's too intense to ignore. Please advise me on what it could be and what I might do. It's been too long to ignore and it feels like it's getting worse.
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Are they pores? I have had this since childbirth and I have no idea what they are. No itch, no pain though.
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When I received my diagnosis a month or so ago, I spent a lot of time reading this forum and learned an overwhelming amount of information. One post that stood out was someone who had managed to somewhat reverse their fusion with a baking soda spray treatment. I can't find that post, or remember what thread it was posted on, and I'm hoping someone can point me in the right direction. If there is anyone else who has managed to reverse their fusion.
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just been reading some of your comments and diet was mentioned, I try to have a healthy diet , don't eat a lot of spicy foods, I always buy fresh veg and only eat fruit like bananas that don't have much acid in. I must admit to having a sweet tooth and do like sweets and I have noticed more flare ups if I have lots of sugary foods. Try to keep my sweetie intake to a minimum which is hard because I think if you suffer from LS you need the occasional treat to cheer you up.. Maybe my fairly bland diet is helping to keep the LS stable
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My Mother suffers from Lichen Planus, which I know is not exactly the same as Lichen Sclerosus. She has recently found urinating really painful. She has today found a convenient way to make things a bit easier. She fills a sports drinks bottle with warm water, and squirts this against herself when she urinates. It is soothing and also cleanses the area each time. hope this may help some people?
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I was diagnosed last year. I also had an early menopause as a teenager so we are looking into IVF to have a baby. I am struggling to find info on how LS affects pregnancy and birth if we are successful? Also thinking that the steroid cream can't be good for pregnancy?
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I have questions about the clitoris being buried. My first LS breakout was about 7 months ago. Have had a couple less severe ones since. I've gotten tremendous relief and healing with the hydrogen peroxide/saline spray, and Caprylic MCT oil (derived from coconut oil) Didn't even know what the heck it was until I found this forum. Have not been to doctor but will make an appt. Noticing as I examine myself that area that my clitoris may be "disappearing" behind folds. I've been reading on this forum and wonder: does the steroid cream reverse the fusion a bit? Enough to free it again?
I had a friend who had a procedure to "free" her clitoris -- not an LS sufferer, but her architecture was such that it was covered up & couldn't climax with her husband all their married years. She finally did some research and found a doctor who specializes in this, and he said "you're 100% covered up". With a minor procedure, she is now normal down there and able to be satisfied with her partner.
I was just wondering if the steroid cream or perhaps this procedure could restore my clitoral area as well. It's been such a short time and my sex life was very satisfying just months ago! I'm 53, btw.
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I'm going to have a biopsy done in few weeks time. I was advised by the dermatologist to get some metope (sp?) gel and apply it 1/2 hour before the procedure. However, I look at the instructions and you have to put an air tight covering over the area once you've applied the gel - something like cling film I think. But how will that work on my fanjo?
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have any ladies had the CO2 fractional laser for LS? The reason I ask is that my dermatologist has finally given me the name of the laser they have suggested for my treatment as I'm struggling with the steroids/HPV warts cycle. They have suggested having the CO2 fractional laser followed a couple of hours later by PRP treatment. The dermatologist said they see the best results with ladies who have this combination on the same day.
over this last week my left labia minor has disappeared 😟 Completely and I have struggled to keep the itch at bay. Although the white patches have diminished. in the last week I had to use the Betnovate but after a day the itch/pain was so bad and not subsiding, that I used the dermovate, this I think was the only thing that helped with the itch eventually. But as I struggle to use these creams I have to be very careful as they induce warts.
Hence the doctor has suggested I undertake the CO2 laser and PRP combination next week.
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Does that mean that we women are more susceptible to viruses, respiratory infections, etc.? Do most follow a certain diet ?
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Was diagnosed a few weeks back and steroid cream helped loads but tonight I have what can only be described as a tightness to my clit ( sorry tmi) almost like it's being pulled back ...
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I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being given Dermovate they completely disappeared in around 2 years. And now my clitoris is going too. No itching, no fusion or adhesion. It is horrific to have nothing I can do simply watch helplessly as it goes. Has anyone else experienced anything like me? I feel quite the freak and so alone.
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I feel such a failure. I'm a trained nurse I give other people advice all the time yet I cannot help myself...let alone others. This is so difficult. I thought I was healthy. I eat well and have a positive disposition...well I used to. Will I ever be the same again?
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When I was diagnosed last month I had fusing toward the back of my labia minora to my labia majora. When looking today the fusing is getting worse and I almost have no labia minora. I am very upset tonight. Will it ever unfuse or is it gone forever? Freaking out!!!!
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I wish that was so,but in the world i have been it,men want sex,you all have boyfriend commintments,i bet there isnt 1 person on this site that has had this terrible deisease was single and then found a loving man that was understanding.not likely!!!!.i have problems just like anyone else,but i cant think of what could be worse then this,oh wait yes i can,not ever being able to live in a place of my own,some man wrecked that for the rest of my life.i have about 3 problems in this life that will never ever go away,1 of them being this stupid disease.the other 2 can never be fixed either,but this one is the worst of the worst.why do we have this?i just dont get it.negetive or not,i know i am single for rest of my life.you all have men i'm sure of it.or there is just a few of us that are on here that is single,i wonder if the ones that are single feel they will be single forever.there just has to be some answer to this.they have a so called cure now for hep c took years.well i will be long gone when they can fix this one.i wish i could be postive some how but really how?
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