Lichen Sclerosis

I learned yesterday that I have (probably) developed an autoimmune (?) condition called Lichen Sclerosis (LS). Actually, annoyingly, it’s spelled “Sclerosus” which just looks wrong to me, so I’m spelling it the way half the internet does instead – “Sclerosis”.  Anyway, I went to the gynecologist for a typical well-woman visit, and come out with something new to worry learn about.

It’s a disorder that affects the skin of the genital area, causing pain and itching, and which can lead to psoriasis-like scaly patches and thinning skin.  Now, I don’t like talking about TMI on here – it just makes me feel weird – and this comes close.  So I’m not going to.  I will, however, complain about the price of the medication (steroid cream) to treat it.  $300!  My insurance is refusing to pay for it…so hopefully the doc will authorize a generic substitute.  I checked my insurance formulary and even the generic is outrageous, but is likely to cost me $50.  Doc says the LS is not something that will go away, and that I’ll be “managing” it the rest of my life.

So the first thing I do, of course, is find a Facebook group where I can get the REAL scoop on this from the experts – the people who actually have this problem.  Currently it’s not causing me any pain – just itching.  (I thought it was caused by histamine.  Nope.)  Looks like a lot of women are treating this with borax baths and cannabidiol oil (CBD).   It also appears to be at least somewhat correlated with other autoimmune conditions like hashimotos, which makes sense….once you have one you tend to collect more.  The interweb says that they’re not sure what causes LS, but because of this association with other AI conditions it’s assumed to be AI also.

So …what causes AI conditions?  Overactive immune system.

And what causes an overactive immune system?  A chronic infection.

Again, it all goes back to the gut…at least for me.

I feel like the inflammation from my gut is much better controlled now – my mood has been awesome or close to it for several months now, regardless of what I eat.  If I was a religious person I would say I’m blessed.  I do feel fortunate.  Still, the chronic inflammation from a nasty gut critter – for years – may have set the stage for autoimmunity.

A note about Culturelle Probiotics – and probably other probiotics, for that matter.  A few weeks ago I ordered several boxes from Amazon.  A few days into one of those boxes my mood started shifting back to being irritable and depressed.  This lasted 3 days – unheard of at this point for me.  At first I didn’t know why that was happening, and then I realized I had just opened a new box of Amazon-sourced probiotics.  I immediately switched to a box I had purchased locally at Walgreens, and my mood returned to awesome within a day.  This makes me think that maybe Amazon isn’t the best place to buy this or any probiotic supplement.  It would make sense that since we’re dealing with bacteria, freshness might be an issue…and really, we have no idea how long a supplement sits on a pallet at Amazon or in what temperature or conditions.  So a few days ago I changed all of the links on this blog for Culturelle so that they no longer direct to Amazon – now they direct to Vitacost.  Vitacost runs out of them now and then so I don’t think they keep a massive stock on hand.

So I learned a few things here.  Don’t get probiotics from Amazon…and also, I’m not cured.  Whatever is going on in my gut is being managed…but it’s not gone.

13 thoughts on “Lichen Sclerosis

  1. Yes, I have this as well. Mine comes and goes.
    Along with lichen planus in the mouth. It is very much related to what I eat and the state of my gut. I’ve been living in Italy the past 2 months and not always avoiding the foods that cause problems and they both have been flared up a lot. On the steroid cream use it very sparingly. I’ve read some pretty awful stories about the side effects of the cream. It thins out the skin and tissue which creates other problems.

  2. Christe – It seems a lot of people on the message boards get some relief from antihistamines when it comes to itching. This makes me think maybe there is a histamine connection with LS. What are your thoughts on that?

  3. Antihistamines calm the immune response down, so they treat the symptom. The problem with them, I’ve noticed, is tolerance builds and they become less effective the more frequent they are used.

  4. I may be repeating myself: You need an accurate Lyme screening, and not the crap standard serum antibody test that an average doc will run, which is almost never positive if you’re beyond 30 days of exposure. I was on Amy Yasko’s recovery protocol for months, had done gaps, SCD, Ray Peat…..you name it. 6 doc’s later, was finally properly diagnosed, and voila. Lyme. Leading trigger of autoimmunity. At least rule it out, once and for all. But, make sure it’s through a Lyme literate practitioner. Another doable tip: run the hpylori lab through Yasko’s site. I had multiple false negative stool tests until that one specific lab caught it, which is a newer start up lab of some guys that jumped ship from Genova. DNA based and affordable.

  5. I lost a lot of sleep last night bing reading your stories. I really like your writing style and feel like a kindred spirit. I’ve tried all the diets, am currently working my way through Ray Peat and Nutrigenetics. My blood sugar seems to be going down but not the weight. I don’t believe I have a histamine issue as I have not experienced the mood symptoms you describe but some of the things you’ve gone through, I’ve definitely experienced. We are all different so I’m not sure that what worked for you will work for me, but I’m willing to experiment as you have. Keep writing and learning and teaching. I really appreciate all your efforts.

    S-

  6. Susie – Please don’t ever hesitate to repeat yourself around here. Sometimes I need to hear things several times before I get it. I’m open to all of that…and I’m probably going to dig up your old comments to get the scoop again…but why would I test for H.Pylori? Is there a symptom I seem to be having that makes you think that would be a good idea? Can you tell me (again?) what Yasko’s protocol did for your Lyme issues?

  7. SWOT – Agreed, I wouldn’t think of using antihistamines as a cure for anything. I just found it interesting that an antihistamine might have an effect with LS symptoms.

  8. Sil – Wow, thanks! I love hearing that someone found this blog interesting or helpful. It’s been so helpful for me to have it. My commenters have made the biggest difference for me along the way. I don’t think mood symptoms are typical of high histamine, and honestly I’m not even sure if that’s behind mine. I do know that probiotic helped me though – the rest is really just theory and conjecture. Maybe the Culturelle bacteria just kicked the ass of the Depression bacteria. Who knows! Anyway, welcome and let me know if there’s anything I can do to help you on your path.

  9. When I was first diagnosed with LS I had just had a laser ablation procedure to help reduce my heavy monthly bleeding. This procedure reactivated a herpes virus that I hadn’t had in years. I had numerous cold sores on my mouth and the LS suddenly appeared. I was also taking ceterizine at the time but didn’t notice that it helped much. For me there was a direct connection between the reactivation of the herpes virus and the appearance of the LS. The lichen planus in my mouth had appeared a few years before this but not due to any reason in particular. Looking back, I believe I have had high histamine all my life and it manifested mostly in my skin and digestive tract. Constant skin itchiness, heartburn after high histamine foods, excessive sweating and redness when hot from exercise or weather. So maybe I am more prone to autoimmune diseases involving the skin and mucous membranes due to the high histamine? I’m still trying to figure it out. My LS was definitely triggered by a virus though.

  10. Also, I have many food intolerances that have been confirmed through testing and when I avoid those foods I find that the LS and LP almost completely go away. Problem is I start developing new intolerances to new foods. I’m not very good at eating a wide variety of foods. If I like something I tend to eat it over and over😳. Now that I’m back from Italy, I intend to finally do something about healing my gut. Not that I haven’t tried, but life gets in the way. But this time I’m determined!

  11. Christe – Let me know how it goes! I have a mostly-full jar of colostrum powder – I’ll send it over to you if you want! (I hate to waste it because it cost $50.)

  12. Lanie- that is so sweet of you, thank you! It’s one of those things that I’ve thought about trying but I’m already on a ton of supplements and it’s one more thing to add on. Would love to see if it would help. Let me at least pay for shipping.

  13. Christe – Click the link in the right sidebar that says “Click here to email me” so I can get your address. I got the shipping too – I owe you this and more!

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