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Lichen Sclerosus cured - but it took work.

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FixedUp
FixedUp

I started having symptoms of LS when I was 23 years old (from what I can remember). It got progressively worse until I was finally diagnosed at 26. I did a ton of research and started seeing two alternative doctors about it. The symptoms gradually disappeared, and I have been symptom free for about 6 months. Based on all my research, it seems like the underlying cause varies from person to person, but I will briefly summarize what I believe were contributing factors in my case.

1.) Uncomfortable sex and/or sexual abuse. There is evidence that sexual abuse can cause LS, although I'm not sure if it causes or exacerbates the problem. Either way, my symptoms got a lot worse when I was in a relationship with a man who I was not very attracted to. My only advice (really, whether you have LS or not) is to not have sex if you have symptoms, or if you simply do not want to. The friction physically damages the skin.

2.) Underlying inflammation, which can be caused by the following factors:

a) infection. I had a bad one for a long time. At this point the LS symptoms were quite bad - lots of itching and pain, and shiny white patches. After getting a million tests done, I finally gave up on western doctors, went to see an alternative guy, and he gave me an anti-bacterial, anti-fungal, and anti-viral herb (it was a strong herb). The symptoms started to clear up immediately, and I mean by the next day. I suspect it was a fungal infection because symptoms worsened several months earlier when I was on a round of antibiotics (antibiotics alone will kill the bacteria that keeps fungus and yeast at bay, permitting fungal overgrowth). Anyways, that helped, but the symptoms were still not completely gone. There were other contributing factors...

b) Allergies. I got my alternative guy to test literally everything I ate on a regular basis, and it turned out I was sensitive or allergic to many foods. Dairy was the big one, and when I cut it out, I noticed the symptoms mostly disappeared. At that point, I was sometimes asymptomatic but sometimes it still flared up a bit, which still drove me crazy, so I pressed on.

c) Deficiencies. I had major deficiencies in iodine (this one was important.. I'll discuss it in my next point), vitamin E, zinc, vitamin B12, and I suspect several other things. I took supplements for a short period of time and majorly changed my diet. Now everything I eat is organic, and almost nothing is processed. I eat almost no restaurant food. Just a very natural diet - like how your grandmother would eat. It is a lot of work, but wow did it make a difference. The foods I noticed to be particularly helpful for LS are kale, swiss chard (both blanched to get rid of the oxalic acid), and bison/elk/organic beef. I also eat tons of yams and sweet potatoes. The pain and itching is completely gone. The only symptom I now have is mild follicalitis on one side which only comes up occasionally, and I'm not sure that is even related to the LS.

3.) One more thing. There seems to be a strong link between LS and hormones. As I said above, iodine was an important factor because I had subclinical hypothyroidism (this is very common). The problem is, when your thyroid gland isn't functioning properly, it throws your sex hormones out of whack. So if you are always tired and/or cold, then there is a good chance iodine supplementation might restore some hormonal balance. On top of the iodine, i also tried a couple herbs for hormone issues - black cohosh tea and raspberry leaf tea - and found they both seemed to help with the LS and other symptoms I had.

From all of this, if I could recommend anything, it would be this: first off, examine ALL your symptoms. Chances are, if there is something else going on, it is probably related and might give you a clue as to the underlying cause. Second, FIND AN ALTERNATIVE DOCTOR! The truth is, a western doctor cannot help you with this problem. I found that the naturopaths trained in North America were just as useless. The only two guys that I found who were able to help me had no formal credentials and practiced techniques that allowed them to 'get inside' my body and really figure out what was wrong. One did Muscle Response Testing and the other is simply able to 'feel' what is wrong when giving acupressure. Although these types of practitioners are less common in North America, I guarantee if you start asking around, you will find someone. If not, try going to some herb stores in your local Chinatown district, and they can often point you in the right direction.

I hope this helps! I was so hopeless when I first found out I had LS, but am now so happy I persevered in finding a solution. good luck to all who read this!

34 likes, 322 replies

322 Replies

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  • mouldcat
    mouldcat FixedUp

    Posted

    hello, thank you so much for writing this, I am incredibly grateful. there is hardly any information about this condition any where else, and your information is very useful.

    Unfortunately I cant start to help myself yet, as I live in a very very very mouldy house, and until I am out of this, I think there is no point curing it as it won;t work. I have lived here 7 years. First I had chronic allergies, then symptoms of adrenal fatigue, and now this. well, all of them together, actually. I cannot wait to move to try and heal myself; your post has given me some hope that I can hopefully throw this off. I am going to try acupuncture, as I was going to anyway upon leaving, as I knew I was very ill, but now the symptoms are coming out. It's hellish and embarrassing, and I dont know whether I should mention it to the acupuncturist, or if it is TMI. I definitely agree that a western doctor will do nothing for this condition, and I'm certain they would now correlate it with living in mould, as they haven;t even managed to correlate my allergies with that.

    Thankyou!!!!

    • mouldcat
      mouldcat

      Posted

      PS I am only 25!
    • lizziewizzie
      lizziewizzie

      Posted

      mould....don't give up its out there somewhere. sorry i can't remember the name but it was a natural product.
    • sammiey
      sammiey mouldcat

      Posted

      Do tell the acupuncturist. Just say you also have LS. He 'll prob ask you for the symptoms and you can explain you have inflammation of the labia. Just like that.....!   xxxxxx

    • sammiey
      sammiey lizziewizzie

      Posted

      Its called Thieves Oil .... you disperse it in an electric mist spray. Good luck Mouldcat. Let us know how you get on xxxxx

  • nija62714
    nija62714 FixedUp

    Posted

    Aloha

    I live in Hawaii... I'm a woman 56 years old.I was diagnosed with lichen sclerosus when I was 47. I spent one year healing with many modalities including going to a raw food retreat for three weeks which included juice fast -wheat grass-yoga-raw food classes. 

    I found this to be extremely helpful and kind of reset my whole system 

    I do come from a background of sexual abuse and I do agree that this contributes to this particular disease.

    Currently I'm in a new relationship from seven months and I took some antibiotics from a bad yeast infection. And within a few weeks after that my symptoms started to come back I have the itchiness the feeling of itchiness under my skin. I started going to the acupuncturist two times a week and this is my second week and I'm feeling a lbetter. I cut out dairy caffeine alcohol gluten and i've been juicing veggies as well as wheatgrass daily 

    One of the things I also found very helpful is hormone replacement

    I use estrogen and progesterone cream as well as a vaginal cream

    also started back on a regular yoga practice which I think also helps

    thank you fixed up I will take your other suggestions and add more vitamins

    Mahala for all your suggestions

     

  • jules65
    jules65 FixedUp

    Posted

    Hi I'm new to this forum and have learnt so much from reading your posts on LS.  I was diagnosed a couple of months ago and told I have probably had it for a few years but been misdiagnosed each time.  The specialist didn't want to do a biopsy at first and I'm due to see him again in a few weeks time.  The treatment he has given me has worked but I have had a lot of shrinkage and have a lot of discomfort.  I'm worried about fusing over.

    Anyway I'm really conscious of what I eat and I agree with you that this has an effect on everything.  I have been tested in the past couple of years for diabetes and thyroid and they came up negative so I am a fairly healthy person apart from this issue.  I am going to try changing my diet slightly to see what affect this has so fingers crossed.  I don't drink or smoke anyway and I try to avoid processed foods as much as poss but I haven't been eating as much fresh vegetables as I'd like to.

    I live in the UK so miles away from all you guys but your posts are so helpful. Thankyou as I was panicking with this condition and you have set my mind at ease.  I'm 49 and struggle with the fact I can't have relationships at the moment with my hubby but he is so understanding - I really don't deserve him.

    Anyway I'll keep reading your posts and if I find anything significant to share I will certainly do so.  My step-mum takes flax as she has rheumatoid arthritis and has had breast cancer and has all sorts of digestion problems and she swears by this and says it is amazing. I might try it !!  Good luck everyone!

    • maria87278
      maria87278 jules65

      Posted

      Hi, dear jules65,

      I am sorry to hear that you are passing through the same sufferings as most of us here. That's great that prescribed treatment works for you more or less, we all cross fingers for each other.

      I am from Ukraine, 30 years old, so i beg appologies for my English.

      Just wanted to appreciate you for mentioning flax that your step-mother takes..I read a lot that it works well as LS treament, just bcz it's a natural source of estrogen. So I would like to ask you to tell in details how your step-mum is taking it? In whole grains or as a food fiber.. bcz here we have flax food fiber in markets.

      Thanks beforehand for the reply.

      God bless you!

    • jules65
      jules65 maria87278

      Posted

      Hi Maria

      Thanks for your reply.  My stepmum buys Flax seed in packets which we can get here at the supermarket (Sainsburys).  It's made by Linwoods and she puts in on her cereal in the morning, on porridge or muesli.  She just sprinkles it on and she swears by it.  My step-sister also uses it.  This version is milled and is like a powder/small grains that you just sprinkle over your cereal.  I hope you manage to get something similar over there.  It's definitely on my shopping list this week ha ha.

      Let me know if you manage to find it and I'll certainly let you know if I find it useful.

    • maria87278
      maria87278 jules65

      Posted

      Thank you very much, jules65. I will definitely find it.

      Wish you and your step-mother and sister the best health!!!

    • Ozzie0
      Ozzie0 jules65

      Posted

      Could it be you are using to much paroxide?  Maybe try to use less...it doesn't take much.  Also, I am spraying it on and then gently  blotting with some T-paper.  I've had 80%-90% improvement for almost a year now...no Clobatasol or anything.  I've had LS since I am 35...I am 64 now.  This is the first I've ever had any kind of relief.  Good luck to you!
    • maria87278
      maria87278 Ozzie0

      Posted

      Hi, Ozzie0!

      Did you mean pEroxide? Sorry for asking, just a bit confused. Could you pease clarify this moment? smile

      Thanks. My best wishes to you.

    • Ozzie0
      Ozzie0 maria87278

      Posted

      Hi Maria,

      I mean Hydrogen Peroxide.  Sorry for the spelling mistake.

  • Ozzie0
    Ozzie0 FixedUp

    Posted

    Hi,

    It's Hydrogen Peroxide.  

    Below is the original discussion I started with the exact formula I used to help.  For me, it is as simple as spraying this on once a day, (I started out doing it 2-3 times a day).  It is almost a year and I haven't had to use Clobatasol at all. I hope this helps:

    I discovered something that made my long time LS about 85% better.

    I've had this awful problem since I was 31, (I am 64 now).  It has gotten so bad that everything was white, burning, swelling and itchy. It hurt to even sit down.  For about the last 25 years I used Clobetasol with only minimal results.  It got so bad I was using it every day and it still was getting worse.

    My GYN said it looked so bad that she did a biospy on it.  Here is the blessing in disguise:  She gave me a solution of half saline and half peroxide to spray on the area until it healed up from the biospy, (which turned out negative).  Being a diabetic, healing doesn't come easily to me.  While I was using that solution at least 3 times a day, I noticed that the usual swelling, burning and itching seemed to subside.  In fact, it has been four months...no swelling, burning or itching!  I have not had to use the Clobatasol even once!  This is amazing to me because I was told that nothing would inprove it.  So, now I am down to using the spray 1 to 2 times a day with continued improvement.  What a relief this has been.  I hope someone else can try this and get some relief.

    One more thing.  Spraying this solution is not an overnight cure.  I had to use it for weeks to heal up the wound from the biopsie, (little did I know it was also healing the LS). However, if it works as well for you as it did for me, it is well worth the effort.  Not having all the symptoms that goes along with LS and not having to use Clobetasol, antibiotic creams and other stuff is such a God send.  I literally just spray this stuff on and forget it....amazing! I just wanted to put this out there incase it could help someone else.

    Here is the formula of Hydrogen peroixide and saline solution:

    4 oz bottle of hydrogen peroxide mixed with:

    500 ml of saline.

    Then I put it in a spray bottle and use after each bathroom use...up to 4 times a day, (I'm now using it once  daily and it is keeping the LS about 85% better.  Some days I even forget I have LS...isn't that amaziing???  I hope this works for someone else.

    • PennieG
      PennieG Ozzie0

      Posted

      Hello Ozzie0,

      Thanks for posting this. Are you using food grade hydrogen peroxide?                

       

    • Ozzie0
      Ozzie0 nija62714

      Posted

      Yes, that's exactly where I spray it. I also spray it on the surrounding area. Good luck!
    • Ozzie0
      Ozzie0 nija62714

      Posted

      Yes, that's exactly where I spray it. I also spray it on the surrounding area. Good luck!
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