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,

    That's great news. Could you give the name of the very strong anti-bacterial, anti-fungal, and anti-viral herb that you took. Thanks.

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    • Posted

      Hello there!

      i was just diagnosed with L..S

      i live in California and I wonder If you took the herb that was recommended or if you are cured

      I'm desesparate I'd appreciate your opinion

      thanks

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  • Posted

    ummmm... okay I'll put this out there, but recommend you see a doctor before taking it. I know almost nothing about herbs beyond the research I have done for myself. If you're going to try it without seeing a doctor, here's what mine told me: do not take it (or any herb) in combination with other medications, herbs, alcohol, or recreational drugs. The interactions are largely unknown, and there are cases of people who have had liver failure from combining herbs with pharmaceuticals and/or alcohol.

    The herb is called Coptidis Rhizoma, and looks like small pieces of cross section from a root (pretty sure that's what it is). The dosage is about 6-7 pieces a day steeped at 86-89 degrees Celsius for 4 minutes - I was told this matters. You will need a thermometer. Drink the tea at 12 hour or 8 hour intervals. It's an antibiotic, so needs to be taken at regular intervals every day.

    You will l likely know right away if this herb is something you need. It is a very bitter tea, but if you need it, there will be something about it that tastes good. Also, your symptoms should improve almost immediately. For me, the itching and burning was gone the next day, and I could see the patches starting to heal. I also slept better than I had in months, and psychologically felt much better. If you do not experience relief in the first couple days, it is likely not the right herb for you.

    Like any antibiotic, you need to continue taking it after the symptoms go away. I could tell right away when I was done because it went from tasting good to being absolutely gross - could barely choke it back. I also started getting a rash on my skin from it (you can become allergic to this herb quite easily if you don't need it). So you have to pay attention to how your body responds to it.

    My doctor also recommended taking some probiotics after the herb is done because, like any antibiotic, it kills the good bacteria in your gut along with the bad ones, which leaves you more prone to infection in the future (gut microbes act as a barrier to pathogens).

    Please note that while the herb made an enormous difference for me, it did not fix the problem completely. It took all the aforementioned dietary and lifestyle changes to get rid of it completely. In any case, I hope this information is helpful to you and others out there. Please post if this herb works for you as well! I'm curious to know.

    Thanks!

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    • Posted

      The Chinese name for the herb is Huang Lian, I found when I researched your info.  The active ingredient is berberine, and I was able to find berberine in whole foods, so I'm going with that, because it is as effective for diabetes as metformin according to what I'm reading, and I have that condition as well.  I bought calendula oil and wormwood as well, so hopefully I can get some relief from the horrid itching and the fear of what is to come.  I plan on cleaning up my diet as well, but hopefully these herbs will help with the fungal infection.  Oh, and I bought some borax to soak in, not sure if I will dry internal use of that........
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    • Posted

      Hello! I hope and pray you are still around. I have LS And my vgina is literally starting to change. My clitorus hurts if it’s rubbed etc....

      Just so afraid. Can you tell me more about borax and the stuff you used. 

      Thank you I feel so scared and when I look at my vagina I panic. It’s changing! I admit if didn’t use the steroid faithfully... it’s my fault. It has been two years since I was diagnosed.

      Thank you and please any updates?

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    • Posted

      Help! I'm new to this, although I've had symptoms for years! I'm scared.

      I dont know...to do the cream or not?

      What to eat, bathe in, etc.

      I've jist gone on an all natural diet. Only on day2.....

      I need to talk to someone...I'm lonely and lost. The pocs online are horrid, and 1 of my labia is already gone. The other is small....I'm sad/depressed.

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    • Posted

      Is this Manuka honey or something different?

      I saw someone got excellent results woth a 3%hydrogen peroxide and medical grade saline solution applied daily. Have yoi tried that?

      Do you the CLOb. I'm afraid to use ot and afraid not to use it. My stress is so high which isnt helping.

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    • Posted

      I feel so bad for you! My clitoris is almost gone. My vagina is completely changed. 

      I was told to use BORAX and baking soda.

      I was wondering if you used the honey?

      Did it work? If so what kind exactly???? Please!

      Thank you.

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    • Posted

      Be careful with MediHoney. I am allergic and made my already severe system infection worse when applied to wounds. Hospital switched to silver strips. Had a superb response. It’s medical silver, and comes in cloth-like strips.
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  • Posted

    One more thing. If this herb DOES work for you, then I suspect it might be the same kind of infection. My doctor said it was fungal, most likely systemic Candida (yeast). This made sense based on all my other symptoms, and also explains how hormone signalling gets altered - because Candida releases estrogen analogues - which could potential be the hormone imbalance underlying lichen sclerosus. If you google 'Candida overgrowth', you can see if your symptoms match up. If so, you probably want to cut mushrooms out of your diet (your body can become cross sensitive to other types of fungus), and try to adapt a more alkaline diet (again, just google 'alkaline diet' for more information).
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    • Posted

      Dear FixedUp

      Thank you so much for details of the cure which you mention. There may be a number of avenues appearing. A friend of mine also cured herself. 

      There seem to be various approaches.

      In your case systemic candida...I entirely agree with the hormone imbalance inference and I've found paleo ...possibly the autoimmune protocol...as I'm not there yet, helpful. By going gluten free the high levels of saccharides from the breakdown of sugar and starches is reduced. Did you try this method too or was your success foundered solely on the herb?

      Did you have auto immune issues or any hormonal problems alongside your LS ?

      THANK YOU SO MUCH FOR YOUR CONTRIBUTION. WE ARE ALL INDEBTED TO YOU!    

      Love marey xxxxxxxxxxxxxxxxxxxxx

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    • Posted

      Hi Marey,

      Sorry for the tardy reply; I forgot about this forum until I received an email reminder. i'll try to answer your questions the best I can.

      pertaining to diet: I did not, and have never, completely cut out gluten, though I certainly eat much less than before. I don't believe this is a major sensitivity for me; however, wheat does seem to cause problems for lots, and it certainly dissolves into it's component sugars pretty quickly which can cause gut yeast overgrowth if you eat too much, so I would advise anyone with LS to at least try eliminating it to see if it helps.

      Hormone issues: this is a tricky one. I have had my hormones measured a couple times with no abnormal results, but the problem is there are variants of estrogen and progesterone in your body (the tests typically measure only one type for each) and they both fluctuate greatly depending on the time of the month (the tests were based on a one-day blood sample), so the 'normal' range is quite broad. In other words, the test is pretty meaningless. Same deal for thyroid hormones - the 'normal' range is arguably too broad. Despite the negative results, I have symptoms of hormone imbalance. When I had LS, I was freezing all the time, wore a winter parka inside all day while working at my desk, had no energy, etc - all thyroid symptoms. My period was every 21 days instead of every 28, which can mean borderline infertility. It is now every 24-25 days as long as I am eating clean, exercising, and getting enough sleep, but shortens when I fall off the wagon.

      Autoimmune: no sign of this at all anymore, but when I had LS, I was starting to get symptoms of Crohn's and possibly chronic fatigue syndrome, but was never formally diagnosed with either because I fixed the problem before it got too out of control.

      I definitely struggled lots with anxiety and depression, really needed some therapy which I finally got and now am more proactive about managing my stress through meditation and moderate exercise. Based on my research, I believe this is a major component. I recommend Gabor Mate's book 'When the Body Says No' - an excellent read about the link between health problems and psychology.

      Sorry I don't have more definitive answers to your questions, but in any case, I hope this helps and hope you get better!

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    • Posted

      Thank you FixedUp,

      Well i've just ordered 'when the body says no' (and looked at 'scattered' as well since ADHD is a big problem among youth and badly needs to be addressed as a failure of our culture!  I'm aware of dietary solutions and this information needs to become mainstream per the GAPS protocol ...but thats an aside). Gabor Mate also recommends not letting peers replace parenting and I'm big on that....whereby I hope my daughter will be a good influence on her friends and able to resist negative influences through the support and encouragement that I try to offer discreetly but unconditionally. Are you a parent? If not yet then you'll make a good one in the future.

      So I'm tracking down coptidis rhizoma...I had had acupuncture with a western practioner but may go elsewhwere as she didn't offer herbs. I actually studied Ted Kaptchuk so have some familiarity and did a western study version using our herbs instead of chinese to be more macrobiotic about things. That was with Carlo DePaoli who's done a cookbook recently with Rose Elliot....so that's exciting and I must check that out too. I believe I was meant to encounter you and I am supremely grateful. Thank you for all this advice and feed back...absolutely brilliant. I'm proposing to start a 'healing log' in the Alternative medecine section  under Lichen Sclerosus - so hope you will check in on me with more of your words of wisdom xxxxxxxxx

      I think damp heat applies as a description I tend more towards constipation than diaorrhea. Which way was your tendency? Am wondering about mushrooms. Have given up so many foods but like my other adviser you're not keeping away from any food groups in particular....except trying to alkalise which I used to be more aware of in the past and will pay more attention to once again so thank you for that also.

      Is it a cooking thermometer that you recommend?

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    • Posted

      Hi Marey,

      Can you please point me in the direction of the 'healing log' you started? I am also suffering from intermittent/latent symptoms of LS and wish to eradicate it totally if I can.

      Thanks!

      Report Reply

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