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!
34 likes, 322 replies
bbh1712 FixedUp
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Guppy007 FixedUp
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So thanks to 'Fixed Up' for posting as it is very informative.
Guppy007 FixedUp
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So thanks to 'Fixed Up' for posting as it is very informative.
holly_22334 FixedUp
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I quote what you said find an Alternate Doctor. Can you describe what I'm looking for? I have Lichen for some time now and I'm wondering who I would be looking for? I'm from the States but there are Alternate Doctors in the Western world everywhere.
adele39821 FixedUp
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I was so happy to read your message since it is the first glimmer of hope I have had since being diagnosed with LS this past fall. I am lucky in the sense that the diagnose came early and the disease is barely visible, but not so lucky in the sense that the clobetasol I was prescribed has only been somewhat successful in suppressing my symptoms, so I want to look into some of the other issues you mentioned in your message.
Can you please tell me what kind of alternative medical person you saw?
Also, your story sounds exactly like mine, i.e. the itching and symptoms started about three years before my diagnosis. How long did it take you to get symptom-free? I am trying to be patient, but it's hard.. I have a healthy sex life with my husband, and this is really putting a huge damper on it! : (
Do you (or anyone else on this forum) have any ideas about connections between LS and the copper IUD? I had mine placed about 8 months before my first flare-up of symptoms and am wondering if there is some kind of connection.
Many thanks for sharing your story; I hope to hear from you soon.
kari61500 adele39821
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sammiey adele39821
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Oh gosh...please remove that dreadful device...then rest and detox your body before reattempting sex ... I'm sure you intuitively know this xxxxxxxxxxxxxxx
lisabaker1986 FixedUp
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TL545 FixedUp
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I am fed up wiht this LS so in desporation I did another search to see if I caould find anything new and saw your post.
It all makes sense now! I had a very bad case of Systemic Candidas. My body was shutting down and I was very sick. I found a really good Acupuncturist who specializes in allergy elimanation. I was becoming allergic to everything. He saved me. It took time but I steadly improved.
The thing I wondered about is why I never had a genital yeast infection during this whole Candidas thing. I guess I did have a problem but not a traditional yeast infection. It was LS. I did take oregano oil and aciacidophilusto help rid my body of the candida along with medication my Dr. gave me which caused Jaundice but killed the bacteria.
I was not diagnosed with LS until years later however. The unbearable itching finallly stopped with Clobrtasol cream a Dr. prescribed because it was different than the drawer full of other creams I had been given. Still though, I did not get a diagnosis until years later.
Also Drs. keep testing me for thryoid problems but the tests come back within the acceptable range.
My brother recently got dianosed with hasimotoes and you listed thryoid problems as maybe being a culprit. I am going to revisit this thryoid thing.
So now I have a plan of action and I thank you very much for posting this.
NeedFixing45 FixedUp
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Hi FixedUp,
It was so refreshing to see your post and I'm very happy that you're fixed up! I'm 45 and was diagnosed with LS earlier this year. At first I was given an estrogen cream that I'm still using but when my condition was getting worse, I had surgery removing the Vulva thinking that could help. Not only was it traumatizing but it has not helped emcee the LS is spreading like wild fire. I am now using a steroid cream to reduce the inflammation. I've only been married for almost two years and have been struggling with painful sex since even before but did not know the cause until recent. I'm definitely going to take your advice and seek a holistic approach to fixing my issue but can you tell me if there is any hope for painless sex? I'm sure I'll have more questions along the way but for now I'm going to follow your advices seeking a cure.
adele39821 NeedFixing45
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Hi NeedFixing45,
Yes, the best thing to do is go see an alternative doctor! I saw two such doctors (both naturopaths, but one who treats LS like an auto-immune disease) and have been very happy with the results, especially since sex has not been painful since seeing them.
Besides adopting an alkazlizing diet (very important, I think, and be as strict as you can), here are some of the things I do daily thanks to their advice:
First thing in the morning, before eating:
1) 1 tbsp apple cider vinegar in a cup of water on an empty stomach
2) 1 tsp baking soda in warm water with 3 tsp lemon juice
Throughout the day, fresh lemon wedges in warm water (at least 6 - 8 glasss)
Morning and night, ozonated oil to the affected area
2x / 1 tsp flaxseed oil (mixed in food or taken straight, as you wish)
One of the doctors has me taking high doses of vitamin A and E, as well as B12 and D3. You shouldn't take these until seeing someone professional, though, since too much of any vitamin without guidance is not a good idea.
Finally, I also drink Raspberry leaf tea morning and night, with 1/2 tsp of inulin (prébiotic).
Good luck! There is hope, so don't give up!!
dana67195 adele39821
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Where to get ozonated oil? I've ordered from overseas but it loses its ozone by the time I receive it.
adele39821 dana67195
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NeedFixing45 adele39821
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Hi adele39821,
Thank you for your feedback. I'm in the process of searching for a homeopathic Doctor so hoping these issues can be addressed soon. I'll try your suggestions as well and will keep optimistic.
samantha1970 NeedFixing45
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Hi, just be a little careful with Ozonated oil. I bought some, opened it and the smell/strength of it caused my airways to swell up. I was clearly allergic to it and I'm allergic to very little. Test it first if you can before buying.
NeedFixing45 samantha1970
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Thanks for the tip. Right now I'm trying to figure out which method to use as a topical to get the skin feeling normal instead of the steroid I was prescribed. This is a bit personal but, I just wish my husband and I can make love without me being in inscruciating pain! I welcome suggestions.
samantha1970 NeedFixing45
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Hi, the main alternative which dermatologists suggest for people who don't use Dermovate/ steroids is Protopic. A number of ladies on the boards use this as do I (dermovate didn't suit me). It's more expensive than dermovate. I use Protopic 3x a week, extra virgin coconut oil or Emuaid along with baking soda pat down after the toilet. I've cut right back on gluten (not fully) and dairy (also not fully but limited). At the moment I appear to be trouble free. Good luck, it's all trial and error. ??
adele39821 NeedFixing45
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Dear NeedFixing 45
Not too personal at all.. we are all women on this forum and I imagine we all want the same thing in this fight: to be healthy, and to enjoy painless sex. If Western medicine can’t help us (indeed, all my gynecologist and dermatologist had to offer for advice was more steroid cream for longer periods of time and a shrug of the shoulder condemning me to a life of pain and depression), then we should help eachother. That requires honesty and frank speak : )
If you can stand more advice from me, please read on.
1) Abstain from vaginal sex for at least two weeks, if not more depending on the state of your LS. If your longterm goal is to get back to a normal, painless sexlife, then this is absolutely necessary. Your skin needs to heal; having sex will just prevent it from doing so and continue to aggravate the situation.
2) Abstain from vaginal sex when you are symptomatic, even if only slightly so.
3) Only have sex when your vagina is significantly lubricated with your own natural body fluids. If your body is not ready, than listen to what it is telling you. Avoid over the counter lubricants, not matter how natural they say they are, since they will only mask the fact that your skin is actually dry and, in the long run, will dry your skin out even more.
4) Have some raw aloe vera gel on hand. (Raw = make it yourself. There are plenty of youtube videos that show you how). After sex, rinse and pat dry and apply the gel. (Test beforehand on the inside of your arm to make sure you aren’t allergic). Aloe vera gel will help heal the microabrasions caused by the friction caused by sex, and it is completely natural and free of any chemicals that would dry your skin, etc.
5) Avoid having vaginal sex more than once in a 24 hour period, if not 48 hours, especially at the beginning.
6) During the times when you can’t have vaginal sex, engage in a bunch of foreplay and other sexual activities. I’m not kidding! Don’t forget that you are a sexual being, and that just because you’re not having vaginal sex doesn’t mean that you can’t enjoy all the rest. This will actually help reduce the stress that the anticipation of pain can cause (and we all know that LS feeds on stress), and will help you ease back into your normal sex life with greater success.
I hope this advice is useful to you. Along with the supplements and the alkalizing diet that I mentioned in an earlier post, this « sex » diet worked really well for me. Good luck to you!
sammiey samantha1970
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