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

    UPDATE: Hi all, it's been awhile. Hope I answered your questions adequately. anyways, I just came here to update you on my progress. I have lost track of time but I believe it was about 2-3 years ago that I made this post and am still symptom free. I want to add something that was missed in the above, and which I believe is a key part of this and many other health problems: my mental/emotional/sexual health.

    I always struggled with low-grade depression and anxiety which sometimes became more severe for stretches of time, I had disordered-eating behaviours for years (lots of diets, overexercise, body image issues) despite having always been in the healthy weight range. I also had lots of unresolved family issues which contributed to unhealthy relationships with the wrong kind of man and lots of anxiety and confusion about sex. Most of these problems went unaddressed for years because I functioned highly despite them (excellent grades in university, lots of friends, positive demeanor, etc).

    I'm not saying everyone who has LS has these problems, but I will say that before I sought therapy I thought I was 'pretty normal'. Within one session I realized this was not the case at all, and there have been many situations in my life where my sexual boundaries have been overstepped. It was painful to acknowledge but I'm so glad I did it.

    When I read that there is a loose correlation between childhood sexual abuse and LS, this triggered my thought process... was it really a coincidence that when I developed a health problem, it was in that particular spot on my body? I feel pretty strongly that there is a psychosomatic component.

    Then I started thinking about the statistics with respect to women and rape/sexual assaults: 50 percent of women in their lifetime, and that is thought to be low because many people are confused about the concept of consent and don't realize they have been abused. I was raped prior to developing LS.

    Then I started thinking about the large number of friends I have who have experienced pressure from a boyfriend/husband to perform sexually on his terms on a regular basis. Not exactly rape, but not okay either. In retrospect I believe my ex-boyfriend probably played a bigger role in triggering my full blown LS than anything else. He was very pushy sexually.

    I wonder if this is the pink elephant in the room. It never seems to come up on these forums, and I wonder if it is because no one really wants to admit to themselves or others that their husband/bf plays a role in this because that would mean admitting that the relationship is not okay. Or perhaps 'he' isn't doing anything directly, but we have unwanted sex anyways because we fear that if we don't, he might leave. I have certainly been guilty of this.

    I hope my full disclosure does not come off as accusatory - this very well might not play a major role in most LS cases, and perhaps most people have healthier sexual histories than me. I'm just curious if anyone can identify.

    thanks!

    • Posted

      Hi There,

      Thank you so much for your posts they are so informative. I had an appointment with my doctor today after suspecting i have lichen sclerosus she thinks i have this and has referred me to the vulva clinic. I would like to treat this as naturally as possible so I am going to look into the stuff you have talked about. I also think i have a systematic candida infection which i am going to deal with first. I also relate to this last post about the sexual element to LS so i can identify wth you here,

      Thank you 

       

    • Posted

      Hi there, congrats on curing your LS.   Like others, 

      I appreciate you sharing personal information that may benefit others.  I have lived with LS for many years and have wondered if I developed it in response to my unhealthy feelings surrounding sex.  Yes I was basically raped as a teen and have felt pressured to have sex when I didn't want it.  Although these happened many years ago I've wondered if this stupid  disease manifested itself in the area my brain is trying to protect.  Hmm food for thought.  Take care and good health to you.  

      Jackie

    • Posted

      hi jackie and kellie

      it was so kind of fixed up to share her experience....there are an increasing number of women who have healed now....good luck with your journeys...i am with you and following mine too. xxxxxxx

      love marey 

    • Posted

      hi have had symptoms of LS for a couple of years and i can identify with this. I don't agree with steroid use as I believe they 'supress' symptoms which may go elsewhere in the body. I am going down the alternative route for a 'cure'. I use a cream I make myself which soothes and hydrates. 
    • Posted

      Have you tried manuka honey?  I've been reading up about it and on another forum a woman says it has cured her LS. She used a pearl size amount on her areas of issue and says it has healed. Others say they still use it...just to be safe as it keeps the tissues healthy.  I just ordered some and will be trying it. (Also to note...many doctors are in agreement about it's healing properties).  Expensive stuff...but natural...and worth a try.
    • Posted

      The woman who advised this says she continues to use it every night at bedtime and it has kept her LS in remission and very possibly cured...but she is playing it safe and continues to use it. It's definitely worth a try...and certainly can't hurt. They say honey is the food of the gods. 
    • Posted

      Yes, sexually abused growing up. Sexually harassed at work. Chemo.
  • Posted

    hi fixedup!!! smile thank you so much for all the info you have posted. I just wanted to know how you used the coptidis rhizoma for making the tea. like how much water u used and you mentioned as well that it was 6 to 7 lil pieces of the herb per day. So that means that you just boiled once the 7 pieces and later you reused them or how that works??
    • Posted

      FYI...you can purchase coptidis rhizoma in pill form...it is simply called Coptis.  I purchased mine online from a Chinese herbal site.  A bit easier than the tea and is still very effective.
    • Posted

      Hi Nina,

      Sorry for the late reply; I do not receive email notifications when people post. 

      For the herb, definitely do not use boiling water. I hope you didn't try this, and am sorry if you did. Brewing temperature really matters, and from what I can recall, for this herb it was around 85 degrees for 4 minutes. Use enough water for 3 doses and take it 3 times over 24 hours, like an antibiotic. Please let us know if it works!

      hope this helps

    • Posted

      (I should note, my guy did not recommend the same herb to another lady who approached him with the same issue. It seems the underlying cause can be different from person to person)
  • Posted

    SImple way to heal is use a pearl size drop of stong potency Manuka honey every night - just rub it in affected area.  It works!
    • Posted

      brilliant dee

      thank you so much...and for keeping this important thread alive!

      i'm going to add MH to my repertoire!

      how are you...and where have you come from....so great to have you on board!! this is a wonderful tip ...thank you again .

      love marey 

    • Posted

      Are you talking about professional grade manuka honey? I have some I got online through Amazon that has a umf 15. Or the kind you get at the healthfood store that is food grade for eating?

      Thanks for your help!

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