Lichen Sclerosis Natural Remedies and Cures Support Forum, Page 8, : Special Forum View. Complete messages are Expanded, and threads are ordered by the Date of the First (Topic) Message (classic old view).

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Plz Help - Stinging So Bad willowwhite 7 y 1,773 † C †

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Plz Help - Stinging So Bad

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First, thanks for the great forum. Finding so much info here. Just hope to get some direction. What does this sound like? I'm thinking demodex or filarials. Would like your ideas and reasoning, so I can proceed with the right treatment.

My current symptoms are nightly stings and nips on the hands, legs and feet, neck and head, and breasts, and tiny red marks on skin that follow the stinging. I can't see anything biting me, so it is either microscopic or maybe it lives within the skin. On the lower extremities, I also have sensations every night that my skin is being lightly touched (like if someone touched you with a feather). I also have sensations of something moving thru the pubic area, but can't see anything.

I also have anal burning as if someone is holding a match under my anus (not itching) for over 7 months now. I discovered worms after that started, but I haven't seen any now for the last about 5 1/2 months after a few rounds of albenza.

I developed a new symptom a month ago that feels like tiny blisters or scales in the bottom of my mouth, very back of roof of my throat, and inside the lower lip.

Although all tests done so far have been negative, one doctor did diagnose me about 6 months ago with hookworms. At the same time my dog scraped positive for demodex. 5- 6 months ago, I experienced tiny barely visible little black or cream colored filarial types things that would sting and that I could wipe off with a tissue, anal and nasal worms and worms in the feet and larva migrans and currens. Doctors have put me on a few rounds of Albenza and Ivermectin which seems to have eliminated the worms.

I have a history of being bitten by the same little black things about 20 years ago but didn't develop worms at that time.

I'm better than I was 6 months ago, but I'm at a standstill with diagnosis and how to proceed with tx. What kind of parasite causes these sensations and stings and marks on my skin?? Plus makes the anus burn and throat and mouth scaly?? My docs seem to be over trying to help me and I feel on my own but don't know how to tell if this is demodex or filarials or something else.

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- Do you mean blackened Cream worms, where part of ... mattk3 7 y 1,739
  
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  Do you mean blackened Cream worms, where part of the worm has blackened, dark purple, blue.
  Do you mean blackened Cream worms, where part of the worm has blackened, dark purple, blue.
  
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  - I’ve never heard of blackened cream worms, but a... willowwhite 7 y 1,708
    
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    This is a reply to # 2,372,757
    
    I’ve never heard of blackened cream worms, but after googling that, no. The filarial things that were biting me were tiny barely visible to the eye; usually they were black but occasionally crea ....
    
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    I've never heard of blackened
    cream worms, but after googling that, no. The filarial things that were biting me were tiny barely visible to the eye; usually they were black but occasionally cream colored. Sometimes they would come in pairs. I ran across an article (excerpt from a book) on the internet that described exactly what I had and even had a picture, but I have never been able to find it again and didn't make note of what it was.
    
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    - the cream and black filaments sound like strongylo... Positive mind 7 y 1,556
      
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      This is a reply to # 2,372,763
      
      the cream and black filaments sound like strongyloides. They are tiny so what you feel could be another infection. Most cases people are infected with several types, along with bacterias, yeasts, ....
      
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      the cream and black filaments sound like strongyloides. They are tiny so what you feel could be another infection. Most cases people are infected with several types, along with bacterias, yeasts, viruses etc. you need to address these issues all at once and remove infections one by one.
      
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      - When I had the little filaments the first time abo... willowwhite 7 y 1,688
        
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        This is a reply to # 2,373,059
        
        When I had the little filaments the first time about 20 years ago, I would get an allergic reaction and rash with them. This time around, no rash; just the stinging and biting.
        When I had the little filaments the first time about 20 years ago, I would get an allergic reaction and rash with them. This time around, no rash; just the stinging and biting.
        
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- Got the results back from the culture f the bliste... willowwhite 7 y 1,644
  
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  Got the results back from the culture f the blisters in the mouth. Postive for yeast and bacterial infection. Got px for diflucan just one; and augmentin. Don’t know if these infections have anyth ....
  
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  Got the results back from the culture f the blisters in the mouth. Postive for yeast and bacterial infection. Got px for diflucan just one; and augmentin. Don't know if these infections have anything to do with the other parasites or co-incidental.
  
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Lichen sclerosus diagnosis - need advise Tergot223 8 y 1,586

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Lichen sclerosus diagnosis - need advise

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Hi everyone.

I realise this forum is not that active but that's ok, we all share a common problem and I have learnt to be very patient over the years.

I am a male aged 30. I was recently diagnosed with lichen sclerosus after a visit to a dermatologist. The reason I saw the dermatologist was because prior to this around 2005-2006 I started suffering from ejaculatory anhedonia (numb ogasm) and I lost a lot of sensation in the head of my penis. I have ben checked by a neurourologist who could find little wrong and I was referred to a dermatologist as part of the diagnostic process.

My lichen sclerosus is life long. I caused trauma to the foreskin/head of my penis when I was a youth after inserting a pen knife to try and loosen the foreskin in order to retract it. This was due to a conversation I had with a friend who could easily retract his foreskin, yet I couldn't. It gave me a lot of anxiety at the time which is the only way I have of explaining why I did it. There was a little bleeding at the the time but I did not go to hospital thinking it would stop, which it did.

I have never been able to have comfortable erections or retract my foreskin when erect. I have lesions around the head of the penis (white bumps), as well as down the shaft of the penis which I've been told are harmless sweat glands.

I have other skin complaints elsewhere on my body (mainly hair and face, chest line) - dermatitis. I also suffer from peeling lips which I've recently considered my in fact be lichen planus/sclerosus. I did not discuss this much with the dermatologist at the time at I keep the lips moisturised which makes them appear less worse than they are. If I leave them alone they will chap and blister, peel and bleed if I bite away the dead skin.

In wanting to get to the bottom of this I've considered that perhaps my lifelong untreated genital lichen sclerosus may be having strange effects elsewhere in the body if indeed the body is reacting to the urine which the damaged skin comes into contact with. Is the autoimmune response having negative effects elsewhere in my body?

My first question is is this possible ?

Secondly, I have been prescribed Enumovate ointment (clobetasone butyrate) which I am shy of using as I hear bad things about steroid ointments for this condition.

Instead I am proposing to use calendula ointment, it contains the following:

organically grown helianthus (sunflower) seed oil,
organically grown calendula officinalis (calendula also called pot marigold), cera flava (beeswax), tocopherol (vitamin e).

Any info appreciated.

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- Lichen sclerosus thrives on oxalic acid. Mine has ... RN SUCCESS katepoet 8 y 1,622
  
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  Lichen sclerosus thrives on oxalic acid. Mine has been in remission for 4 years with a low oxalic acid diet and taking 250 mg calcium citrate (to absorb oxalic acid in the food I do eat) at each m ....
  
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  Lichen sclerosus thrives on oxalic acid. Mine has been in remission for 4 years with a low oxalic acid diet and taking 250 mg calcium citrate (to absorb oxalic acid in the food I do eat) at each meal. That's all I do for it.
  
  Also some stem cell therapy has been successful with LS.
  
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  - Hi Kate, as my problem was physically induced do y... Tergot223 8 y 1,363
    
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    Hi Kate, as my problem was physically induced do you think that keeping urine away from the damaged skin will eventually allow it to heal, or am I passed that point? Strangely I have noticed a ....
    
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    Hi Kate, as my problem was physically induced do you think that keeping urine away from the damaged skin will eventually allow it to heal, or am I passed that point?
    
    Strangely I have noticed a difference in my skin problems elsewhere, especially my lip dermatitis/peeling, so perhaps my LS was a precursor for these other problems.
    
    I've started to clean my penis after urinating to make sure there is minimised contact with the skin of the penis.
    
    Some of the red parts have turned pinker.
    
    I'm still not sure I really understand this condition. Is it simply that the urine is conflicting with the damaged area and causing the skin to inflame (auto-immune response ??)
    
    I don't really want to use the steroid cream, I'm not sure what to do next really.
    
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Lichen Sclerosus Sclerosis and pH #211872 8 y 543 † C †

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Lichen Sclerosus Sclerosis and pH

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Has anyone noticed a relationship to pain/relief and the pH of water?

I had an AHA moment one day when showering and experiencing the most excruciating pain just from the water.

Realizing that chlorinated water is basic, I decided to put some water with a tiny bit of vinegar into a spray bottle. I only used enough so that the water tasted very slightly acidic.

I sprayed the hell out of my crotch and could not believe how soothing it was.

You would have to figure out what pH works for you, but I think there is something to this.

For best results, I spray multiple times per day, gently towel dry with a fluffy towel, then blow dry the whole crotch area with low heat until thoroughly dry.

It's now the only way I bathe my crotch.

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What worked for me #209272 8 y 603

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What has worked for me to halt the symptoms of Lichen Sclerosus is pure Calendula Oil. I use organic from Herb Pharm, which you can easily get online or in some health food stores. It has alleviated all symptoms and halted the progress of this disease for about a year now - and I was miserable. I promised my daughter, a doctor, I would post online to help others. Good luck.

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My Lichen Sclerosis is gone! RRR Success #200470 9 y 5,562

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My Lichen Sclerosis is gone!

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I have had trouble with this since probably 2007. It started with the white skin and odor. I dealt with it for a long time. I used calendula healing balm from honey love essentials, which helped with the intense itching and even cleared the white patches. It deals with the symptoms, but doesn't "cure" it. What finally did though...i switched to organic diet and eat sprouted or ezekiel bread. I drank Essiac tea for two weeks and even wiped the mud "herbs" in the bottom of the jar right on my lady parts. What relief! I took it right after a major flare up caused by my period.

It still didn't seem to be completely gone though. Maybe it was working it's way out, but I was itching. So, I got cannabis oil (rick simpson oil). It's super thick though, so i thinned a half gram out with hemp seed oil and put it in a dropper bottle. It's very sticky and when you rub it on, it will stick in place for a good while, but i do it at random times throughout the day for now. I will eventually just do it a few times a week. Seems to be GONE, baby gone. I have not had the desire to dig at my crotch in 2 weeks!!

Hallelujah! Thank you Jesus for these gifts.

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- I also have been taking the simpson oil internally... #200470 9 y 3,947
  
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  I also have been taking the simpson oil internally for 5 days.
  I also have been taking the simpson oil internally for 5 days.
  
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- Hello. Could you tell how is your LS now after usi... McFly81 6 y 2,045
  
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  Hello. Could you tell how is your LS now after using Ricks oil. I want to get Rick Simpson oil so bad but no one seems to sells it. Please let me know if it really helped you I tried everything I ....
  
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  Hello. Could you tell how is your LS now after using Ricks oil. I want to get Rick Simpson oil so bad but no one seems to sells it. Please let me know if it really helped you I tried everything I just want to die because of this terrible condition.
  
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Lichen Sclerosis - where does it end? Ashley123 9 y 2,961

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Lichen Sclerosis - where does it end?

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After reading all of your messages I feel obliged to let you know that lichen sclerosis can indeed turn to cancer. I know because I have had three laser treatments in that area where they burned the skin off right down to the last layer and still ended up with two major surgeries. I know this is not what you want to hear but it is what you need to hear. I have had both a vulvectomy (first surgery) and a radical vulvectomy because of cancer. Doctors try to avoid this disease because they don't understand what they are dealing with and some really don't seem to care. I have seen MANY, MANY doctors about this and not one of them prescribed anything but the steroid. After ten years of suffering, I tried yet another doctor because I had moved to a new location for my employment. Thank goodness he was "with it" enough to immediately take me off work and get the ball rolling. I would not be alive today if it had not been for this man. Seems like all of you - the ones I have read anyway - have so far escaped this. I was given steroids and, not knowing what the side effects of steroids were, used it all the time and in ample amounts. Not one of the doctors I had seen prior had mentioned anything about the dangers of this cream. I cannot stress enough to use anything BUT the steroids.....anything!! Obviously, I am very depressed about having my vulva and clitoris removed but at the same time I am happy that the doctors, and I had a team of them, found the cancer in time to save my life. I have grandchildren - 5 of them - and I want to be able to enjoy them - I have learned so much from this forum that I feel I may have been able to avoid such measures if I had had more faith in the internet and what's on it. I still have lichens sclerosis on the parts that are left so I will indeed try some of the things that you people have suggested here. Thank you!!

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- Thanks so much for the insight! Pamster 9 y 1,585
  
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  Thanks so much for the insight!
  Thanks so much for the insight!
  
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- I’m confused, are you saying the steroids gave you... Toobusy 8 y 1,497
  
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  I’m confused, are you saying the steroids gave you vulva cancer or the untreated LS (before the steroids) gave you cancer or the LS is the reason you got cancer despite your treatment? I read ....
  
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  I'm confused, are you saying the steroids gave you vulva cancer or the untreated LS (before the steroids) gave you cancer or the LS is the reason you got cancer despite your treatment?
  
  I read that it's usually the untreated LS that increases the risk of cancer from LS.
  
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- Ashley123: Thanks for your heart-rending post. I’m... #210968 8 y 1,088
  
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  Ashley123: Thanks for your heart-rending post. I’m sorry you had to go thru what you have, but glad you survived!! That’s the most important thing--that you’re getting to enjoy your grandchildren ....
  
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  Ashley123: Thanks for your heart-rending post. I'm sorry you had to go thru what you have, but glad you survived!! That's the most important thing--that you're getting to enjoy your grandchildren. Could you tell me what you think now, in retrospect you would have done differently if you HAD trusted what's on the internet. And also what would you would have used instead of a steroid? Any definitive sign posts or wisdom you can share would be much appreciated. Thanks!!
  
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Emu Oil and Lichen Sclerosus britcher 10 y 5,023

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Emu Oil and Lichen Sclerosus

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I am a 68 uear old female diagnosed with lichen Sclerosus 3 months ago.
I have not yet used a steroid cram and would like not to.
I read of the suceess of one person wth Emu Oil and tried it with amazing success. It cleared up the itch immediately and I use it several times a day. I have just ordered a pint of it on line and plan never to be without it.
My question is ... will this prevent the horror stories that I am reading about such as fusing and deformities?
I have not yet experienced this and am afraid to even think that this may happen.
Th Emu Oil is just amazing and so comforting ... it feels soft and supple and I just hope that it will keep this thing under control.
My doctor is clueless about this and only recognizes steroid creams as effective.
Any thoughts, comments or advice is nuch appreciated!

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- I like natural remedies too if possible. I found ... alec4health 10 y 3,540
  
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  I like natural remedies too if possible. I found that on the Lichen Sclerosis Yahoo Group that Dee Troll runs, she pushes her own agenda, which is to only use hormones. Dangerous if you ask me.
  I like natural remedies too if possible. I found that on the Lichen Sclerosis Yahoo Group that Dee Troll runs, she pushes her own agenda, which is to only use hormones. Dangerous if you ask me.
  
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- i have to add my experience to the lichen sclerosi... thewoman 8 y 2,749
  
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  i have to add my experience to the lichen sclerosis discussion. i too suddenly started experiencing intense itching and burning, but with no discharge or odor. i first thought it could be an all ....
  
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  i have to add my experience to the lichen sclerosis discussion. i too suddenly started experiencing intense itching and burning, but with no discharge or odor. i first thought it could be an allergic reaction to new underwear (chemicals), even tho they were white cotton, or scott toilet paper which i had switched to recently and read a bit about some people experiencing a reaction. changing both of these didn't seem to help. i read about emu oil and immediately ordered some. since it was going to take a couple of days to get delivered, i did what i could out of desperation. i had some argon oil and some tamaru oil. i mixed them together and applied. what a relief!!!! immediately! i applied it often for these last two days and then started with the emu oil that i received today. this was an amazing cure. and i believe it is a cure. the relief! i will continue to use the emu only because it seems to be more of a healing oil than the two i combined, but i had to tell it on the mountain! by today, when i came back to this forum to report on it, i had even forgotten the name of what i had!!!! it's that amazing! emu! get some!
  
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Edited #178214 11 y 729

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Edited
I've had Lichen Sclerosis for years. A few drops of sweet almond oil on the tissue that one uses after a toilet visit will combat soreness and odour...

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Meds not working doodleone 11 y 3,104

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I was diagnosed 4 years ago, and have had 3 reoccurances. Every other time the Steroid cream helped immediately. This time it is not working...at all. 2nd trip to Doctor have me a stronger steroid which made it much worse...with inflamed red skin appearing within a day.
I am at wits end....I am also having a wierd new symtom...an itchy butt! Surely it is a reaction, perhaps allergic? I can't sit for any ammount of time without being insanely uncomfortable, both by the itchy butt but it seems to be a precurser to the crazy itchy genital area. HELP! I've tried oat meal baths, washing with water after urinating, a multitude of creams and just about anything I've read about...and nothing helps for long. My next appointment isn't for another couple of weeks, but frankly I haven't found a Doctor yet who seems to have a clue what to do. AHHHHHH@

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  I realise it has been a while since you posted your message PM but just letting you know that I am going through the same thing. I have managed to get another hospital appointment and if I get an ....
  
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  I realise it has been a while since you posted your message PM but just letting you know that I am going through the same thing. I have managed to get another hospital appointment and if I get any good advice or better creams I will come back to you. Rob
  
  View all messages by Robertina98 on this forum, all forums.
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Plz Help - Stinging So Bad

Do you mean blackened Cream worms, where part of the worm has blackened, dark purple, blue.

I’ve never heard of blackened cream worms, but after googling that, no. The filarial things that were biting me were tiny barely visible to the eye; usually they were black but occasionally crea ....

the cream and black filaments sound like strongyloides. They are tiny so what you feel could be another infection. Most cases people are infected with several types, along with bacterias, yeasts, ....

When I had the little filaments the first time about 20 years ago, I would get an allergic reaction and rash with them. This time around, no rash; just the stinging and biting.

Got the results back from the culture f the blisters in the mouth. Postive for yeast and bacterial infection. Got px for diflucan just one; and augmentin. Don’t know if these infections have anyth ....

Lichen sclerosus diagnosis - need advise

Lichen sclerosus thrives on oxalic acid. Mine has been in remission for 4 years with a low oxalic acid diet and taking 250 mg calcium citrate (to absorb oxalic acid in the food I do eat) at each m ....

Hi Kate, as my problem was physically induced do you think that keeping urine away from the damaged skin will eventually allow it to heal, or am I passed that point? Strangely I have noticed a ....

Lichen Sclerosus Sclerosis and pH

What worked for me

My Lichen Sclerosis is gone!

I also have been taking the simpson oil internally for 5 days.

Hello. Could you tell how is your LS now after using Ricks oil. I want to get Rick Simpson oil so bad but no one seems to sells it. Please let me know if it really helped you I tried everything I ....

Lichen Sclerosis - where does it end?

Thanks so much for the insight!

I’m confused, are you saying the steroids gave you vulva cancer or the untreated LS (before the steroids) gave you cancer or the LS is the reason you got cancer despite your treatment? I read ....

Ashley123: Thanks for your heart-rending post. I’m sorry you had to go thru what you have, but glad you survived!! That’s the most important thing--that you’re getting to enjoy your grandchildren ....

Emu Oil and Lichen Sclerosus

I like natural remedies too if possible. I found that on the Lichen Sclerosis Yahoo Group that Dee Troll runs, she pushes her own agenda, which is to only use hormones. Dangerous if you ask me.

i have to add my experience to the lichen sclerosis discussion. i too suddenly started experiencing intense itching and burning, but with no discharge or odor. i first thought it could be an all ....

Edited

Meds not working

I realise it has been a while since you posted your message PM but just letting you know that I am going through the same thing. I have managed to get another hospital appointment and if I get an ....