Lichen Sclerosus cured - but it took work.

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!

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.

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!

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).

Hi,

I was wondering how progressed your LS was when you started these alternative treatments? e.g. do you think it would help with closed up vaginal entrance etc? (sorry for tmi)

thanks for your information, it's a shame not all of us can just eat what we want and be perfectly fine!

x

Hi! I was dx about 2 years ago but not have done anything medically about it. I do mostly alternative medicine. I have changed my diet to mostly Paleo. It has helped a lot but whenever I eat some cheese I start to flare up. I went to a homeopath for this condition but to no avail. Still tearing and bleeding and skin is completely fused over the clitoral area and also can't have sex anymore because of the shrinkage of the opening. The area between the vagina and the anus (my baby scar) keeps tearing and bleeding making it burn when I pee. I have used Emu oil, Aloe from my plants, castor oil, and Perrins blend. They all seemed to work on and off for a while but it comes back. It's been about a year since I have had any relations with my hubby. I feel really badly for him but he is so understanding and cares so much.

I know the skin can unfuse as it has already happened to me several times. I don't know what I do to make it unfuse or what I do to make it fuse up again.

I was wondering if you contact me privately, would you tell me what state you live in? Ni would be interested in seeing those docs if I were close enough to travel. Or maybe they may be able to recommend someone. I am on the east coast. I too have tried Naturapaths and they are truly worthless. Went to funcitional med doctor and she put me on the elimination diet but now on Paleo. I do have a parasite and Candida and am MTHFR +. I also have Hashimoto's thyroiditis but don't medicate for that either. I'm just sending out my urine for iodine levels so I have a beginning level to compare further results with. I would be happy to hear from you. Thanks so much.

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Terrimazzei, you need to see a medical doctor. It seems to me like you have quite an aversion to see a conventional practitioner but considering you have Hashimoto's thyroiditis that has been left untreated I am not surprised that you LS is so severe. There is a known connection between thyroid problems and those who have LS. Many LS treatments are hormone-based, if your thyroid is totally out of order then your hormones will be too = not helping your LS. Please go and see a medical doctor before it becomes too severe to do anything about, really your alternative practitioners should be referring you at this advanced stage in the LS process. It is irresponsible of them to do otherwise. Best of luck.

Totally agree when you have confirmed Hashimoto (you have antibodies which do not recognise healthy organs you are likely to develop serious health conditions , heart disease, severe arthritis , Addison's disease, or Diabetes, over time , this is fact . You are quite seriously putting yourself at risk .I have angina and deteriorating heart disease simply because I was sub clinical for many years , damage is done .

Is the angina also linked to LS. I have angina as well as diabetes and arthritis. I had connected the last two but not angina. That is interesting as I think I had Ls when I was quite young. I have torn easily since very young.

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

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

 

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. 

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

ok the second effort worked...just testing again

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

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!

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

How are your teeth Chrisy?

Root canal treatments can often be the cause of coronary conditions and transferred infections.

Best of luck.

Love Marey xxxxxxxxxxxxxxxxxxxxxxx

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.

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