Lichen Sclerosus cured - but it took work.

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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!

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  • Posted

    Hi Ladies,

    can an you let me know please if any of you are based in UK. Your thread is very interesting and I'd like to start looking into allergies and deficiencies in my diet and I'm looking to find a practitioner who covers these test as somewhere to start.

    many thanks, Samantha

  • Posted

    Thanks for this very helpful and encouraging thread! Am going to try the AIP, also other of your suggestions.
  • Posted

    Hello Everybody...so my Lichen is doing better, i went through Clobetasol and all tratment

    I still have redness in the labia majora....where all the hair grows...is that normal?

    I have so much irritation there everyday even when my white patches are going away....anybody experienced that?

    • Posted

      I've noticed the white patches coming and going....

      How are you doing now? Have you been experimenting with any of the various regimes out there?

  • Posted

    Thank you for sharing your experience. Please keep us posted!

     

  • Posted

    Hello Everybody...i have a question...can LS happen inside? i mean in the vaginal- vestibular area? i am suffering from major pain there, even in my ovaries...all started when i started using clob...most of my LS is gone, but i am having major pain and discomfort there...anybody experienced this?

    thank you!!

    • Posted

      I don't know, but a GYN person would.  Just for your peace of mind, (and to get some relief), I would suggest letting your doctor take a look.
    • Posted

      i asked the dermatologist and told me to put some clob inside, which i am a little scared of....so went to the GYN and they did an ultrasound, but i have no results un til the 10th....i got a little scared because radiologist never want to tell you a bit, i have to wait... sad
    • Posted

      i mean, the GYN took a look and said she sees nothing wrong, but asked me for an ultrasound....u=i have a normal ultrasound from december last year...but i have this pain since i started with all LS treatment and all that oinments in my vulvar area...isnt it curious?
    • Posted

      Yes that is curious.  Can you ask your GYN what you should do next?  I have always thought that pain was because 'something' is wrong.  Have you tried spraying the hydrogen peroxide and saline solution I tried that cleared up my LS for well over a year now?  At least this will not give you any bad side effects and it just may help you too. Just don't give up...a solution is out there for you...you just need to find it.  Best wishes, Nancy
    • Posted

      A lovely exchange between the two of you xxxx

      How are you both now? I'm also persisting with experimentation x

  • Posted

    Hi everybody ~ I have been diagnosed with LS for 10 months, although it was symtomatic I recognise years earlier. The diagnosis was made from referral to local gynae clinic followed post menopausal bleeding indicative of cancer, for which I am clear.

    I was prescribed steroidal cream and ointment for 6 months with no improvement ~ in fact the symptoms of pain and itching grew worse. The HRT pessaries I reacted to as the LS became more severe. Also I initially used E45 cream as an inmmollient satisfactorily.

    I was discharged in May 2015 as there was nothing else on offer from the clinic; in despair ~ Like Fixed up I too have suffered with depression.

    I have followed this blog for several months and used the tip of manuka honey which was unsucesssful for me.

    In an metaphysical vein of my body, mind and spiritual connection ~ I asked intuitively what inwould work effectively for me.

    Since then I have used raw Aloe Vera applied to the vulval inflammation ~ this was initially 4-5 cm diameter and reduced to 1cm in 6 weeks. The remaining spot gives no symptoms and is something I endevour to relieve - more of this in a moment.

    Through discusssion with a freind and there were no others who desired to enter conversation regarding LS other than my husband, I found how Hydromol ointment for dry skin conditions applied liberally acts as a barrier from extermal triggers to itching. I have had no itching since.

    Although ~ I no longer have symptoms. There is this patch of imfammation for which I endevour to heal using theraputic healing meditations which I have devised.

    Whilst the aloe vera has reduced the inflammation significantly I continue with meditations to heal the emotional inflamations such as anger and irritability with smouldering rage, that I sense are my own triggers psychosomatically to the condition of lichen sclerosis.

    • Posted

      Fascinating Pamela... mind over matter. Its very much a thing.

      With some physical adjustments like addressing nutrient deficiencies. How are you now. I'm greatly improved since quitting gluten but still exploring. Found your post helpful. Thank you xxx

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