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Lichen Sclerosus cured - but it took work.

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FixedUp
FixedUp

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

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  • catlove
    catlove

    Posted

    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

    • FixedUp
      FixedUp catlove

      Posted

      Hi Catlove,

      Not TMI at all - I'm glad these forums exist where people can be open.

      The itching from my LS had started about 3 years before the diagnosis (or thereabouts). I don't know when the white patches came but I think it was about 6 months before I got diagnosed. So I didn't have it for very long.

      As to whether alternative treatments would help a case that had progressed further, I can't say I know, but when I chatted with my doc about it he told me that typically the longer a problem has been around, the longer it takes to resolve (kinda makes sense). I do believe that it is reversible in everyone, but in more serious cases it might take more time for the inflammatory/immune response to settle down and for the damage to heal.

      hahaha, yes, I have to agree, I certainly do miss yogurt and cheese.

      Best of luck! If you have more questions, do not hesitate to ask.

  • terrimazzei
    terrimazzei

    Edited

    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.

    Emis Moderator comment: I have removed the email address as we do not publish these. If users wish to contact each other directly please use the Private Message facility

    • FixedUp
      FixedUp terrimazzei

      Posted

      Hi terrimazzei,

      I'm not a doctor, but the thing that really caught my attention in your post was the Hashimoto's thyroiditis. Are you sure it's Hashimotos and not just normal hypothyroid? If so, then you really need to see an allopathic doctor about this because iodine won't help (unlike the more common type of hypothyroid, Hashimoto's is autoimmune and cannot be corrected with iodine supplementation. You will need to take thyroid hormone orally).

      I would correct this first and see if your symptoms improve before flying anywhere. The reason is because all your thyroid hormones control production of all your sex hormones (estrogen, progesterone), and if your thyroid doesn't work, these will be very out of whack. This could possibly be the cause of your LS.

      Do you also know for sure you have a parasite and candida? I don't know much about MTHFR except that it is a variant of a gene that can influence health.

      I live in Canada, not the states, but am glad to help in any way. Send me a message if you want to chat.

    • Kjz
      Kjz FixedUp

      Posted

      Good evening

      I'm in Canada also and would like to know who you saw. Perhaps I can make the travel. Very depressed with this condition. Can u message me ? Or email me? I registered on here just so I can message u

    • renee72446
      renee72446 Kjz

      Posted

      Hi did you ever find out who she saw? I'd also be interested in knowing.

    • maria20912
      maria20912 renee72446

      Posted

      Hi! Just got diagnosed yesterday. What have you been doing to help yourself?
  • tinkers22
    tinkers22

    Posted

    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.
  • Nana_g
    Nana_g

    Posted

    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 .
  • Chrisy
    Chrisy

    Posted

    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.
    • marey
      marey Chrisy

      Posted

      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

    • Chrisy
      Chrisy marey

      Posted

      Sorry been visiting daughter in Bristol.  Had loads of fillings when young.  Many root canal treatments.  I have problems with my enamel and now have a great Dentist who is replacing all my amalgamum (excuse spelling) fillings with other types of fillings.  I have four white fillings, two gold crowns and a gold inlay to date.  Will check out that Dr you mentioned.  Thanks a lot for the advice. xx
    • marey
      marey Chrisy

      Posted

      Hi Chrisy

      How nice to hear back from you! Hope your daughter is well and enjoying Bristol....my sister used to live there overlooking Chew Valley Lake. Its a nice place...politically very active and forward looking! I'm in South West Wales.

      I was also a victim of the thinking associated with dentistry of yester year. They made a few bob by wrecking peoples teeth!! But also I used to eat sweets...was very strict in stopping my daughter from doing the same. You too? I was so relieved after I had those root fillings removed.

      Sorry to hear you have diabetes and arthritis as well as the angina. How is your blood pressure and your arteries? Do you know if they've furred up? Its not too diff to remove plaque from the arteries and to shift the arthrits....bone broth made from organic meat is the trick. Its all about getting a nutrient dense diet and escaping gluten and processed food especially processed sugar. Have you tried paleo? I'm making progress with it but my LS symptoms went away within a few days of giving up all grains and gluten. Have you been undersome stress?

      Love Marey xxxxxx

    • Chrisy
      Chrisy marey

      Posted

      Re reading old posts I noticed I had not replied to this Marey.  So sorry I missed it.  Have low BP, arteries are fine now after statins and lower fat diet,  I also make lots of bone broth and stocks.  I have not too stressful life most of the time although like most people I have my moments.  I didn't stop my daughter from eating sweets but made sure she carried out good dental hygiene after eating them.  She had her first filling the other week at 22 nearly 23 years old so I think we didn't do too badly, she never had that many sweets anyway.  She is aware of a possible link between metal fillings and dementia so is going to have non amalgumun fillings if and when needed.  I find following specific diets difficult as I am usually in a rush grabbing the first thing I fancy so I try to eat as healthy as poss and don't keep much unhealthy stuff in the house. I'm looking into removing mushrooms and all fungal (yeast) type products from my diet.  I am allergic to Quorn anyway so that suggests that I have a problem with fungal foods.  I also have restricted grains in my diet as I feel so bloated after eating too many anyway.  Funnily enough I also get bloated after lentils and pulses and have terrible wind. Citrus fruit seems to cause Ls flare ups. Doesn't leave much to eat when you start restricting things from your diet and if you buy food outside, as I often have to, it is difficult to get a meal that doesn't include one of these things.  Being a diabetic  I already restrict sugars/carbohydrates too, most of my diet is from non processed foods anyway.  As a result I find the thought of a restricting my diet more too much at the moment.  Maybe something I might look into in the future when I am laid up after my foot op for some considerable time later in the year.
    • marey
      marey Chrisy

      Posted

      My daughter is 23 as well...and beginning to take an interest in health....I'm trying to persuade her to give up all the chemicals she uses...in everything....hair products, soap and shampoo, conditioner etc ...all piled with unpronounceable names! 

      I know what you mean about rushing and not being able to find much to eat when out and about! Very noble that you're thinking about, or, going to quit yeast and mushrooms...I noticed you saying you're inclined to get thrush. I've thought about it too incase i have concealed thrush but wonder if I'll have anything left to eat! From a chinese medecine perspective mushrooms are suited to me so I may leave them in. i do like them ....got some sitting in my fridge possibly for a mushroom omelette for breakfast!

      I'm impressed with how well you notice your body's reaction to foods. I used to get bronchitis and healed that by giving up dairy and I did notice how heavy it made me feel but the reaction seemed to pass and I was able to resume eating dairy but am going easy on it. 

      Are you able to take Co Q 10 if you're continuing with statins? It ll give you a great boost!

      Good Luck with the op...well we'll all be following you! x

    • Chrisy
      Chrisy marey

      Posted

      Hi Marey,

      Thanks for your reply and advice about Co Q 10. I might look into that. I actually didn't say I had thrush in fact surprisingly it is something I have never had. My reaction to Yeast has been a dermatitis type reaction, and my reaction to Quorn has been my throat becoming itchy and starting to feel like it is closing. My Gp is aware and I'm now very careful about what I eat. Yes Epi pen is available.

      Thanks for the good luck. will update about foot later, I'm on waiting list, they say will be 3-4 months time.

      Daughter is always trying to save the world. So I think we did a not too bad job about educating her in the way of conservation.

      Take care. x

    • marey
      marey Chrisy

      Posted

      oh its great that your daughter is trying to save the world! She will probably care a great deal about you too and be worrying....although of course you'll be fine.

      Well i'm glad i was mistaken about the thrush but sorry i did make an assumption that you 're concerned about yeast for that reason. On reflection i think its Morrell who suffers with that.

      You could try taking the pack or an info leaflet from your local healthfood store about Q10 to your GP....but don't worry if you were just being polite!!....not many have heard of it but he or she might have a read up! Mine takes an interest in wider thinking and even read a book by one of the contributors to the thyroid summit (which i was banging on about!). 

      best wishes

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