Lichen Sclerosus cured - but it took work.

Posted , 162 users are following.

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

Prev Next
  • Posted

    Dear FixedUp,

    Thank you so much for writing this.

    I live in Los Angeles, by any chance, can you PLEASE recommend a doctor/doctors you saw.

    Congratulations on getting rid of the problem.

    Kind regads,

    Sofia

    • Posted

      Hi Sofia,

      I live in Alberta, Canada, and the only two guys I saw that helped were not real doctors or even certified alternative doctors. If you message me, I can give you more info, but if you live in NY it is likely that people like this exist in your own city... just gotta find  those gems. Let me know!

    • Posted

      I Sofia, I'm just reading about how to heal L.S. 

      Im live in San Diego and I like to know how you're going with the L.S

      did you find any good doctor?

      thanks!

       

    • Posted

      Raquel I recommend Dr John Willems. He is with Scripps Clinic Carmel Valley and has specializes in treating this disease. Good luck!
    • Posted

      Hi FixedUp,  where in Alberta do you live?  I'm from Edmonton and would be very interested in knowing their names and where they practice. 
    • Posted

      HI there,

      Sorry for the very late reply. Send me a private message if you are still interested in seeing my two guys. Another lady went to them and had partial, but not complete resolution of symptoms, FYI

    • Posted

      Hello i live in Alberta no doctor is helping would you please tell me if any doctor help i am seffering alot

  • Posted

    Hi there,

    Again ..jst to thankyou sooooo...much for all the info you took the time to share..you have been so helpful to me as I had never heard of this condition till I went to the hospital the other day in so much pain not jst from the L.S but I also suffer from Fibro-Myalgia..so have been given dermovate and dermol  moisturiser and then go for Biopsy.Auch! Me no lookin forword to that..but must be done ..so thanks again x

     

    • Posted

      Good luck with the biopsy.  I'm told it doesn't hurt for long.  I think because of the Ls we must all develop higher pain thresholds than most. 
    • Posted

      i just spent ages replying to you....(!) pressed reply and had message...'you must enter some content' (as if i hadn't!!).

      will try again

    • Posted

      ok the second effort worked...just testing again
    • Posted

      dear angeleyes09

      you don't need a biopsy as you already know what your condition is...surely the emphasis is on cure?

      unfortunately this is where the medical community cannot help. i speak as a trained nurse as well as a patient. i know another woman who also cured herself ..she has written a book and i'm following it...should you be interested. i was enormously grateful to a woman on this site who mentioned she had made progress by going gluten-free. I had been wondering about that and tried it with great improvement. am also working on my thyroid, 'leaky gut' which is intestinal permeability leading to allergic body responses, and following a resource at "thepaleomom" which is very helpful...see you there too maybe. THANK YOU TO ALL THE KIND ORGANISERS OF THIS SITE  X

      love marey xxxxxxxxxxxxxxx

    • Posted

      On the basis of 'like treating like' I also found that a very hot, focused stream of water from the shower, gave me enormous relief from the itchy burning symptoms....til i was able to get these under control with the gluten-free paleo diet. 

      I would start the hand held spray at a medium temp and then increase it by degrees til it was almost burning....mmmmm the relief!

    • Posted

      You do need a biopsy!  I was diagnozed with Lichen Sclerosus and after taking a biopsy it turned out I don't have one - what I have is chronic spongiotic dermatitis with eosiophils.  It is very important to get a biopsy and detailed testing.
    • Posted

      hi gosofya

      so now that you have a diagnosis....what progress have you made towards a cure?

      what you have is an inflammatory condition which requires certain appropriate principles to treat. i hope you can explore and start the journey towards the cure which i'm sure you will find if you look into it.

      love and blessings marey x

    • Posted

      Hi Marey 

      You mentioned earlier in about an alternaive group where can i find this? thanks

    • Posted

      hi kellie, 

      the moderator of this site started one. its just called alternative medecine. theres only one main post relating to LS at the mo.

      great that you're looking for this.

      xxxx 

    • Posted

      I'm new to this site and read your post with interest. I have LS and am seeing a homeopath for my symptoms.  Remedies always have a SRP and a couple which you might be interested in are better for very hot water. My LS symptoms are definitely better for cold which is why this flagged up for me - homeopathy works on the person not the 'disease smile 
    • Posted

      Hi how are you?? what are treatment are you using for your diagnosed condition? 

      Thank you!

    • Posted

      Hello Marey, could I have the name of the author and title of book you mention.  Thanks. Dana
    • Posted

      Can you please share the name of the book?

      Thanks!

       

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.