Lichen Sclerosus is a condition that I self-diagnosed myself with a few years ago, after much internet research and no help from my doctor. This is still such a mysterious condition, with little concrete medical data out there to refer to, but here are some of my observations and some things that have helped me quite a bit.
First, I believe that it is caused by hormone imbalance and/or auto-immune issues. Most people notice their symptoms begin with hormone shifts. For me, it was at the beginning of peri-menopause, and came along with other, more common symptoms of that. Along those same lines, the symptoms are always worse at the end of my cycle (pre-menstrually) and better towards the beginning of the cycle. Also, I notice my symptoms flare up (and have heard others report the same) when my immune system is run down or strained, especially if I'm fighting a virus (cold, etc... ). Interestingly, as several others here have mentioned, I also have a history of adrenal fatigue/chronic fatigue. So seeking natural hormone balance and a healthy, balanced immune system are, in my opinion, key to going into permanent remission.
Topically, I have found the most success with a cream called Perrin's Cream Complete, found on the Perrin's website (you'll find it if you google it). It immediately relieves discomfort and seems to help quite a bit overall with other symptoms. It is a soothing antioxidant cream that is very healing as well. It was originally developed to help prevent and reverse skin cancer, so for a condition with an increased cancer risk associated with it, this cream is a good one to have on hand. Also evening primrose oil has been helpful topically.
I have tried to adopt an anti-inflammatory diet to help with the auto-immune aspect: no sugar (very inflammatory and noticeably worsens LS), fried foods, junk foods, processed foods/fast foods, margarine or shortening. About a month ago I also eliminated gluten (mostly found in wheat) and either it's a coincidence, or that was truly helpful because it's better now than it's been in years. A whole foods diet that is loaded with vegetables and healthy fats and protein (which includes SATURATED fats: coconut oil, eggs, butter and meat from healthy, pastured cows, etc... ), fish, krill, or cod-liver oil, and low on grains (especially wheat). Try to eat more like your great-grandparents ate and you'll be doing much better than if you follow the USDA food pyramid! The Weston A. Price Foundation has great info on healthy traditional diets and how our modern, western diet and food preparation has damaged our health (westonaprice.org). Learning about food sensitivities/allergies would also be essential for reducing systematic inflammation. If you can't afford allergy testing, try checking your pulse before and after eating suspected foods. If you notice a marked rise in your pulse after eating a particular food, you are probably sensitive if not allergic to it.
Also avoiding chemicals as much as possible in your environment (cleaning products, unfiltered city water), and food (genetically modified and/or pesticide laden foods) is also important. I know there are lots of supplements that help with inflammation: turmeric, fish oil (or krill or cod liver), vitamin D3 (current recommendations are extremely low, so probably around 5, 000 mg. daily, or better yet, get your levels tested and aim for therapeutic levels--check out http://mercola.com for more info on vit. D), and many more.
There are also supplements designed specifically for reducing inflammation. Chinese mushrooms and herbs have been used with incredible success for a variety of inflammatory conditions, so that would sure be worth checking out. Fungi Perfecti has a product line called Host Defense and a product in that line called My Community that looks very intriguing. It's a very reputable company and scores of people with serious immune and/or cancer issues swear by their products. http://iherb.com seems to have the best prices. Searching out anti-inflammatory diet and supplements should provide lots of good ideas. Hopefully there's something of use in all that!
If I discover a magic pill, I will certainly share my discovery, but my guess is that it's really about getting your hormonal and immune systems balanced out, which involves a more holistic approach to diet and lifestyle than what one pill can provide.
(Effingham, Il Usa)
(Newcastle Upon Tyne, U.k.)
I have had LS for a few years to the puzzlement of my gyn until September when the white spotting finally appeared. I tried calendula oil then castor oil and now I am in my 2nd week of Neem oil with a green tree extract added 2 or 3X a day. It is messy but it brought me healing relief.
The others brought relief from the itching and bleeding which is a blessing but I want it to heal and not continue to split.
Niacin for Lichen Sclerosus
Niacin caused burning so the pharmacy told me to take it with aspirin to remove the burning and it worked 100%.
Hello, 10 plus years with LS. I have done all the known therapies. I have found much relief with the essential oil of oregano mixed with coconut oil. 2 tsp of coconut oil to 30 drops of oil. Apply as often as you can, oil of oregano is a HOT oil meaning DO NOT APPLY DIRECTLY TO THE SKIN IT WILL BURN always use a carrier oil like coconut, took care of itch white spots and atrophy.
Hi All, First: thank you for all the help and advice, you are lifesavers. Second: the best thing I have found for LS is ozonated olive oil. I use it every other night and have NO symptoms and my red skin has turned a shockingly normal pink. I left my ozonated olive oil in the frig for about a month, scared to try it. It does burn at first, for about 10 minutes. It gets better each usage after because it is healing your sensitive skin! Good luck and good health to you all.
Ozonated Olive Oil
Ozonated olive oil has reversed my LS symptoms. I applied it to the labia area and it unfused the labia. I have applied a small amount 3 times daily for three weeks now.
I bought a small jar from a British Columbia company and when you receive it, keep it stored in the fridge. It's okay to ship via unrefrigerated mail though. It looks like solid vaseline. Reasonably priced.
There are many topical uses for this product, from acne to cuts and bruises.
After 5 years of suffering with Lichens Sclerosis, I must share what has given me relief and remission. My husband researched treatments and found an OB/ GYN in a neighboring county, who provides Platelet Rich Plasma Injection Therapy. This is an experimental treatment, and I am the 3rd patient she has treated with "PRP" for Lichens.
The 3 treatments with an out of pocket expense of $800 each have completely cleared all of my itching, Burning and white patches. Upon my follow up exam, my doctor stated she could not tell I had lichens! I do not have a reversal in vaginal tissue elasticity, but I believe my peri menopause contributes to that condition. My 3 outpatient treatments were completed in less than 2 hours each, and were non invasive. The process begins with your own blood draw that is put in a centrifuge for about 15 minutes. The platelet the rich plasma is drawn into a syringe and injected in the affected areas (with a large needle to protect the platelets) OUCH!, but the local helps a lot.
This 3 round treatment over 6 months completely cleared my lichens. No creams, steroids or prayers could do that. I was told to come back every 6 months, and that I may require more treatments. After a year I am still clear. This doctor was the first of 3 gynecologists to actually do a biopsy to confirm lichens sclerosis, I am forever grateful to her for taking the bold steps to help me.
FYI PRP is also known as the O shot and the Vampire Facelift, and is thought to restore healthy tissue and blood flow. Read up on it to see if this is an option for you. I know I would pay almost anything to rid myself of the agony of Lichens Sclerosis.
(San Francisco, Ca)
I have tried just about every natural remedy that is listed in EC even with help of my naturopath for a few years. I finally went to a dermo who is well versed in LS and he prescribed Acitritin (ended up on 25 mg per day until he decides to decrease again. We ramped up originally as he had good results with other patients ). I also use a topical as well. I still get flares but it is from stress or skipping the ointment a few days or weeks. He feels if I do this for a year I may be able to go off of everything. My skin is so much nicer. The ointment is called Tacrolimus 0.1% Doc also has me use Burt's Bees baby wipes. He is in Chapel Hill NC. Dr Kenneth Becker. Some of the natural stuff would work a few days or weeks and then I would get a horrible flare. This rash just seems to continuously morph... but that is autoimmune stuff. I keep reading just incase something diff comes along so I don't have to do the drugs. (btw, my LS was a dry spot outside vagina and then a 'hot spot' where my butt cheeks touch. I have gotten 'plaque' (really weird dry skin) in both those areas. I had also had like a thrush baby rash from my mound up and over my belly. I have my labia and clit. Good luck all.... lots of work. hugs~
Research serrapeptase for lichen sclerosus! Serrapeptase is an enzyme produced by silkworms that dissolves scar tissue in the body. I was diagnosed with LS five years ago and have been searching endlessly for a cure. Clobetasol and other natural remedies didn't help at all. My condition was relatively moderate, and my primary symptoms were fusing and whiteness with occasional discomfort.
I recently started taking serrapeptase to help with adhesions related to abdominal surgeries, and I discovered the LS benefit by accident. Taking 1 or 2 pills per day had no effect on the LS. I achieved remission only by taking higher doses of 4-6 pills per day. After about a week at this dose, I noticed that almost 100% of the fusing and whiteness had disappeared. The skin is completely normal now!
**Serrapeptase is contraindicated in people who take blood thinners. Consult your doctor before taking them. I am not on blood thinners, but I did experience a nosebleed at the higher dose.
I have has LS for 5 years now and I'm only 16 years old. So far no doctor has been able to figure out a cure to LS. I've done my own experiments and I've been using Shea Butter for 3 years and I rarely have flare ups or any itching. Though I notice I have more discharge but it's worth not having unbearable itching.
I have recently been diagnosed with lichen sclerosis. I have had severe itching and after trying many things which seem to relieve it for about a week and then it is like it develops some immunity to it, I tried vagisil. This has given me the most relief as a cream. But what has actually been helping to heal it and give much longer relief is sitz baths. I use some epsom salt, lavender, chamomile, comfrey, yarrow, and marigold, steep this in a sitz bag for a bit and add it to a very shallow warm bath. Then I add baking soda to the water and soak for 20-30 minutes. Doing this twice a day is best. This is still very new to me and I'm horrified to find out it is chronic and the damage it causes. I haven't tried the steroid cream yet but after reading the many replies, I'm very concerned about using it at all.
Egyptian Magic All Purpose Skin Cream works as well (if not better) then the prescription Clobetasol. It has all natural ingredients so can be used long term with no bad side effects. My OBGYN said that it was ok to use. The thought of using a steroid cream for the rest of my life bothered me. Glad to have found something safe. Buy it at Costco (best price), Whole Foods or online. Just use as often needed.
A bit of your own urine stops the itching of LS almost immediately but only temporarily. I also agree with others who have reported that staying alkaline helps.
Lichen Scelrosis - theory yet to be proved:
I have a theory that moderate to high use of Vaginal creams for Thrush etc aggravate or possibly even CAUSE LS. The only way to find this out is to get as many women as possible with LS to say whether they have used these creams a lot in the past. I had a history of repeated Thrush and used the creams many times - I notice now that use of these creams aggravate the itchiness and thinness of the area for up to 2 weeks after use. Please post a answer and see if we can 'find' the cause - the Drs have no idea, so....
(Los Angeles, California)
(Chicago, Il, Usa)
(Grantham, United Kingdom)
(Fraser, Michigan, Us)
(Bristol, Avon, Uk)
(Pasadena, Ca, Usa)
Castor oil is wonderful and soothing and aids skin healing.... BUT the CAUSE Of LS is a VITAMIN D deficiency which my integrative medicine MD, who is also a cardiologist, luckily knew all about (but not the gynecologist, go figure).
Take LOTS Of Vitamin D3 and also a small amount of Vitamin K2 to complement it, and the other cofactors for D which include magnesium, Omega-3s, and boron.
Your Vitamin D levels must get up to about 60-80 ng/dl. but not over 90 ng/dl. I was out of pain within 2 days of taking chewable Vitamin D3 3 X a day 5,000 units each. Still need to keep on top of it all. And now also include MSM, sulfur, another mneral we really need. ALSO Colloidal silver works to heal skin and other soft tissues.