The comments below reflect the personal experiences and opinions of readers and do not represent medical advice or the views of this website. The information shared has not been evaluated by the FDA and is not intended to diagnose, treat, or prevent any disease or health condition. Always consult a qualified healthcare professional for medical concerns.
Chlorine-Free Toilet Paper
Posted by Diana (California) on 11/08/2019
★★★★★
Buy NON-CHLORINE TOILET PAPER. and LS will slowly disappear. Hurray! I buy mine at Whole Foods. W.F. makes their own but I buy Seventh Generation. The recycled chlorine free is pricey at a dollar a roll but worth it. Yes, recycled toilet paper sounds dreadful but apparently we can save forests of trees with it and THAT'S worth it. Your new year will truly be a happy one.
Oregano + Coconut Oils
Posted by EggBiscuit (Georgia) on 10/29/2019
★★★★☆
Hi Jill, How are you doing now? I tried several oils and creams and the clobetasol seemed to remove the white spots after a month but soreness persists. ( I, too, am from IL but do not live there at the moment.) Have oregano oil and will try with some coconut oil.
Oregano + Coconut Oils
Posted by Jill (Chicago) on 08/21/2019
★★★★★
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.
Essential Oils
Posted by Nym (Australia) on 01/28/2021
Words have meaning. Also see Leaky Gut - the true cause of all disease.
Clobetasol
Posted by Art (California) on 09/26/2020 2326 posts
Hi Marlene,
The clobetasol is one of the strongest topical steroids and the body seems to build resistance to it and it can not be used in multiple areas of the body such as the face, genital areas and the armpits as it can cause other issues such as thinning of the skin and discolorations of the skin. It can also cause high blood pressure if used over large areas of the body as well as blurred vision and high cholesterol. Hair loss is another side effect as is stretch marks. Itching is also a common one These side effects may or may not be reversible once the clobetasol is stopped.
https://www.drugs.com/sfx/clobetasol-topical-side-effects.html
I say this, not to scare you, but from experience.
Art
Clobetasol
Posted by Marlene (Nc) on 09/25/2020
★★★★★
I have had LS for years and only had it diagnosed 2 years ago. My dermatologist put me on Clobetasol Propionate and it works wonders.
Lichen Sclerosus Triggers
Posted by Effie (Tas) on 09/23/2020
Excellent contribution, I agree whole heartedly. Well said. Our internal world is going to manifest in all kinds of physical symptoms, our bodies work to get us to listen, we need to do that.
Coconut Oil
Posted by Deziner (Pennsylvania ) on 07/24/2020
Soy and Canola oils both cause severe itching swelling and inflammation. Grains of any kind also cause reactions. Eliminate wheat, oats, corn, rice, mullet, quinoa, barley, and all oils made from them. I'm convinced it's an allergy for me.
Cold Water, Evening Primrose Oil
Posted by Thebiscuit (Woodstock, Ga) on 07/13/2020
Ann- I just read your post from years earlier. I am next door in Woodstock and similarly situated re the LS. How are you?
MMS
Posted by Mary (Tx) on 06/15/2020
Just ordered MMS for a different condition, then was wondering if this would also help a daughter with LS. Saw your post. Are you still in recovery? Thanks!
Mary
Comfrey
Posted by Sue (Fl) on 10/24/2018
How about cbd cream?
LS Connection to Lyme Disease
Posted by Bl (Ca) on 08/22/2018 31 posts
I am Lyme positive and have systemic Candida. I would think the Lichen Sclerosis if from Candida which most people with Lyme have. I have all three conditions. Yet my symptoms came on after antibiotics for ear infections. A nasal swab has proven they are fungal.
LS Connection to Lyme Disease
Posted by Lisa (New York ) on 08/19/2018
★★★★★
My acupuncturist has seen a connection between Lichens Sclerosus and latent undiagnosed Lyme disease.
Frankincense Oil
Posted by Mama To Many (Tn) on 08/04/2018
Mary,
The bad reaction could be that the oils and water didn't mix well and you got essentials oils straight into your skin.
Baking soda does some as it is too alkaline for sensitive skin.
You might try to keep to a single ingredient to make sure it suits your body. Perhaps just castor oil to start.
~Mama to Many~
Frankincense Oil
Posted by Mary K (Arizona) on 08/03/2018
★☆☆☆☆
Mama to Many, I tried mixing colloidal silver water with distilled water and coconut oil and drops of frankincense and lavender. It burned so bad! What to do? Lessen oils? even coconut oil with baking soda burns badly. I don't know what to do anymore! It is spreading. I am going to try emu oil or castor oil now.
Essiac Tea, Homeopathy
Posted by Mary (Arizona) on 08/03/2018
I am newly diagnosed and after reading so much about this disease, I am terrified. I already suffer from fibromyalgia and Rheumatoid arthritis. I really feel that a cleansing diet and natural remedies are the way to go. The high strength steroid cream just made it worse. My Dr. won't listen and insists I keep using it! My body is telling me something different. Going to try all these natural remedies until I find what works for me. Thanks for all the support on this site.
Dietary Changes, Essential Oils
Posted by Pam (Wv) on 07/20/2018
I was using bag balm when I didn't really know what I had, saw a blister...anyway, went to gyno and was diagnosed with LS. I also have IBS so that is a constant issue...Dr told me bag balm though wasn't really effective and may have made it worse. I had a complete hysterectomy last year. I do take estrogen because I was severely depressed. I do believe what you eat is a big factor. Before this diagnosis I lost 23 on WeightWatchers. The dr also said that a low estrogen level and rapid weight loss has also been noted as a cause of LS.
Besides all this, I already have had skin cancer, recently they found a freckle in my eye, this year it is raised so I see a retina specialist to rule out ocular cancer..and my Mother had anal-rectal cancer and a colostomy bag..she was in remission for 7 years but passed away in 2014 of liver cancer. My grandmother had Uterine cancer.
I'm no dr but I'm trying to figure out what things are linked together. I have nerve issues as well and my IBS has been going on since I returned from Desert Storm 27 years ago, we believe we were exposed to chemical agents. Now this LS thing is worrying me that I may get cancer in that area...
Dietary Changes
Posted by Theresa (Kentucky) on 06/21/2018
★★★★★
Lichen Sclerosus is a terrible disease but it is manageable. I have zero pain or itching anymore. I would get rid of all processed foods and soft drinks. Take probiotics and drink kombucha tea. I have learned in my case that nightshade vegetables set me on fire. Take a natural hormone. Another thing get some DR Bonners organic peppermint soap. Only use that. I use the liquid. Also dr Bonners peppermint lotion is the biggest relief ever during an eruption. Take colloidal silver too.
Lyme Disease Connection
Posted by Frances (Cabarlah, Qld.) on 05/19/2018
If you do a search for Borrelia and Lichen Sclerosus, you will find articles making the connection.
Low Oxalates Diet
Posted by Danise (Illinois) on 04/30/2018
Try 4 tablespoons castor oil....Organic 2 drops essential Lavender oil, 1 drop essential lemongrass oil......that's it. Bought mine from herbal store...supposed to work. anyway they say dont use more drops than what ingredients call for. Just diagnosed....comes and goes...flare ups are horrible...no soap, just rinse warm water....began wearing boxers or mens underwear soft cotton equipo boxers.
Platelet Rich Plasma Injection Therapy
Posted by Lana (London) on 04/15/2018
Hello Ocean51, how is your LS doing atm? This post is from 2 years ago but I hope you will read my message. I have recently been diagnosed with LS and I am looking to try PRP. Your feedback will be extremely helpful. Did you need to do another PRP treatment of several sessions? If yes, in how many months after the first one? Was the effect as strong as the first time? Are you using any steroid creams atm?
Warm regards,
Lana
MMS
Posted by Rita Jean (Texas) on 02/11/2018
★★★★★
Researched for over a year as to the cause of LS. Tried all of the noted protocols on the web. What helped was Perrin Naturals and also ozonated extra virgin olive oil. These worked for different phases of the out breaks. Ended up going back to my old faithful calendula ointment and witch hazel for immediate relief of the itching and burning. Breaks outs always appeared after eating acidic foods. When I researched the bottled water I was using, the test results also showed acidic. Changed to a much higher PH bottled water and continued my calendula and witch hazel protocol. Still searching for the cause is when I found MMS. Drank MMS for 8 days and also did the MMS sitz baths for 8 days. No more lesions, itching, cuts and burning. It took a long time to find this cure for me but thought I would share it as it may help others.
MMS (Miracle Mineral Supplement) - I started with one drop for a couple of days and moved up to 2 drops. With the sitz bath I used 5 drops MMS and soaked for 20 minutes in hot water. By the eight day I wasn't using and witch hazel for the itching and calendula ointment.
Epsom Salt Baths, Vitamin E
Posted by Anastasia (Or) on 02/11/2018
★★★★★
My LS is superimposed on atrophic vaginitis brought on by menopause. I relate to the intense nerve jangling initiated by any washing/drying of the vulvar area, which has shriveled and appears as if all the blood has drained out.
As a remedy, I have been taking daily, 20-minute sits baths with 2 handfuls of epsom salts. Very soothing and relaxing. Then, carefully pat dry the external area only, so as not to start the nerve reaction, or tear the thin sensitive vulvar skin, or cause bleeding. Then, I follow with Vitamin E oil to lubricate and aid in healing the labia, vulvar skin.
This leaves the area feeling cool and calm...
Hoping for long-term relief and healing!
Vitamin D3
Posted by Nancy Kb (Asheville, Nc) on 01/30/2018
★★★★★
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.
Prescription Meds for LS
Posted by Jillery (Rawlly, Nc) on 12/24/2017 86 posts
★★★★☆
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~
Essiac Tea, Homeopathy
Posted by Evan (Los Angeles) on 10/01/2017
Can you please say which homeopathic remedy was helpful for the skin splitting?
thanks~
Lyme Disease Connection
Posted by Tonya (Minnesota) on 09/27/2017
Lora, can you tell me where you read about the connection to Lyme's diesase?
Colloidal Silver
Posted by Rebecca (Penna) on 09/07/2017
I have been using this also.
I also do the borax and baking soda soaks, which have given amazing results!
LS and Hypothyroidism Connection
Posted by Queenie (California) on 08/19/2017
This comment is a little harsh, judgey and might not be true.
It is a very emotional thing, having LS and knowing that stress makes it worse. In fact there is "a going back". There is. I am not there yet, I have just discovered it. But hundreds of women that I have read from in the past week have said that they are experiencing NO symptoms and taking wheat sugar and processed foods out of their diet did the trick. No, I won't say cure- as that would cause an argument. But no symptoms. So there is a "over the rainbow" place for many women. We can't be so harsh online- every single body is different, and some heals faster then others.
LS - Hyperthyroid Connection
Posted by Justine (France) on 08/15/2017
My mother had a thyroid operation when I was very young. I think she had it removed and subsequently was told that it was underactive as she gained weight. She developed LS of the vulva in her 50s and now has scleroderma in her fingers. I have never had any health problems but at the age of 43 I developed LS of the vulva. Could be an interesting line of enquiry to see if there is a connection.
Manuka Honey
Posted by Luckylucy (Nh) on 08/04/2017
★★★★☆
I have had LS for many years and tried Protopic, steroids and none of that really helped. Seroviral HGH made it fade quite a bit. I recently tried sandlewood oil and royal jelly which faded it about 80 percent.
I have for 3 days been using manuka honey and am trying 10+ umf on one side of my chest and 18+ on the other side to see if one works better. LS is now 95 percent flat and nearly all the white is gone. I am keeping my fingers crossed that this finally does the trick. None of the doctors have been particularly useful over the years in finding a useful remedy (but at least they could diagnose it) not even those at the best Boston hospitals... Does it seem that they have far more interest in Lyme disease than helping us women with this sometimes embarrassing ailment?
Essiac Tea, Homeopathy
Posted by Felicia (Mi) on 07/28/2017
Hello, I'm wondering how to use the essiac tea for lichen Sclerosis, I'm reading that people have said they followed the directions, you mean just what the bottle says? Or is there a specific way to take it for lichen Sclerosis? Thanks so much for any help!
Platelet Rich Plasma Injection Therapy
Posted by Saro (Nashville, Tn) on 07/15/2017
Ocean51, could you be so kind and give an update on how you are doing now, please share your doctor that performed the treatment for you, thank you
Platelet Rich Plasma Injection Therapy
Posted by Kathy (Capitola) on 05/16/2017
Can you tell me what Dr. you went to? Would greatly appreciate it. Thank you.
Vitamin E, Lavender Oil
Posted by Cheryl (Tennessee) on 05/12/2017
Review post.... how did you use these oils? How much of each?
Vaginal Medication Link to Ls
Posted by Irene (Timmins Ontario) on 05/09/2017
Seeking more info regarding A&D creme.
Vaginal Medication Link to Ls
Posted by Patty (Me) on 05/01/2017
I have had the hood of my clitoris removed 3 times over the past years, it always grows back with LS. Like many people, I was diagnosed with candida years before LS was recognized. It certainly is not a pleasant condition. I plan on trying many of the treatments people have posted here. This is a wonderful site, I'm sure glad I came across it. I wish every one the best of luck. If I find something that works for me, I will be sure to post it.
Wheatgrass
Posted by Patty (Me) on 05/01/2017
Hi - People don't always have all the symptoms at once. What you are describing sure sounds like LS. You said you've seen doctors, have you brought up LS to them? Maybe ask your doctor to referrer you to an OBGYN or a Derm who specializes in LS. My biopsy came back positive, but they don't always, yet you still have it. I wish you luck.
Lyme Disease Connection
Posted by Lora (Dc) on 04/20/2017
★★★★★
I have recently learned that Lyme disease can also be a cause because of its autoimmune properties
Essiac Tea
Posted by Ingrid (Belgium ) on 04/06/2017
So Daisy, after 5 years, how is the LS? Did the Essaic Tonic Tea work?
Dietary Changes
Posted by Ingrid (Belgium) on 04/06/2017
So strange, what a disease, a hope giving post and then silence. Disapppointing
Wheatgrass
Posted by Ingrid (Belgium) on 04/06/2017
I have had this question too.
Low Oxalates Diet
Posted by Candice (Kansas, Mo) on 02/17/2017
Please help on this diet and how long till see results?
Essiac Tea, Homeopathy
Posted by Ashley (Talladega, Alabama) on 02/05/2017
I think that's what I have. Where do you order the tea because I itch the most at night
Comfrey
Posted by Laurie (Lady Lake, Fl) on 01/24/2017
How can I get some of the comfrey cream from Croatia? I am desperate😟
Low Oxalates Diet
Posted by Margaret ( United Kingdom ) on 01/09/2017
I have had lichen sclerosis for years, it got so bad I went to a Specialist at a Nuffield hospital, finally I found out the name of it. I'm 79 and 3/4!
I tried the "Emuaid" cream, it came from America and was nearly 68 dollars!!! I found out later that it's on "E-bay" much cheaper, it only lasted me a week but it was so good! So soothing, but I can't afford it!
I'm going to try the "Gluten free and Low Oxalates diet, I have done a lot of research on line, my ls is particularly bad at the moment. Wish me luck!! Margaret.
Comfrey
Posted by Compastella (Middle East) on 11/28/2016
Anna,
Please I need to know exactly what the cream is and where to get it urgently. The pain is immense.
Niacin with Aspirin
Posted by Laura (Akron) on 11/25/2016
★★★★★
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%.
Lichen Sclerosus Triggers
Posted by Anna H (Ireland) on 11/21/2016
Another possible cause of LS...
I have had LS for 20 years and while it mostly stayed calm, lately the itch around my genital area is off the chart so I am delighted to find lots of options on your site to try out. I had a suspicion, which others have validated, that years of wearing sanitary towels is a possible contributor, especially if during the 70's, 80's etc.
Lichen Sclerosus Triggers
Posted by Arlene (Colorado) on 11/15/2016
Jodi, I think you've got something there. I've had LS for almost 30 years. It started in 1987. I was having sex with my ex-husband 5 years after we were divorced. I think mentally I was trying to stop and that was my defense mechanism. Thank goodness he met someone and stopped needing me. You mentioned Aloe Vera but didn't say if it helped. Please let me know.
Cold Water, Evening Primrose Oil
Posted by Frankie (Brooklyn Ny) on 11/02/2016
★★★★★
You're right, cold water always work.
Low Oxalates Diet
Posted by Terry (Wisconsin) on 10/18/2016
I have had it for 3 years. For intense itching I use desitin maximum strength, wear white cotton panties with unscented panty liners, and drink organic apple cider vinegar all natural drink, ( found at health food stores and festival food store) 8 ounces 3 times a week. Also when I followed a gluten free diet and no artificial sweeteners my LS was gone. Now I restarted the gluten free diet and no aspartame.
Comfrey
Posted by Anna (Queens, Ny) on 09/25/2016
★★★★★
I cured the LS with a comfrey cream imported from Croatia. I suffered so much the whole last year that I did not want to live. My Croatian friend gave me the comfrey root based Croatian cream. It healed me. I don't have the itch and the inflammation anymore. I use it once or twice a day consistently.
Coconut Oil, Homeopathy
Posted by Ref (Iowa) on 09/11/2016
★★★★☆
I also have found coconut oil to be very helpful and it does not have the odor or expense associated with the creams for LS sold on Amazon. Also, I am afraid of using too much clobetasol proprionate and allowing it to thin the skin. Coconut oil lets me to spread the steroid on thinner and use it less frequently.
Platelet Rich Plasma Injection Therapy
Posted by Kat (San Francisco, Ca ) on 08/25/2016
Can you tell me or email me the name of your doctor? I live in the area and I have been researching the treatment. Thank you for sharing!
Essential Oils
Posted by Karla (Nevada) on 08/04/2016
A major contributor to any autoimmune issue is gut dysbiosis... an imbalance of bad bacteria/yeast (too many) to the beneficial bacteria. Since yeast (candida) is part of the "imbalance", ridding your body of yeast is a great step in mitigating/reversing LS. I take Oregano essential oil internally (3-5 drops in a capsule), 2-5 times/day. Oregano oil is the number one "fungus killer".... got rid of the fungal infection on my husband's feet (thick yellow toe nails are an indication of a fungal infection) when used topically.
Oregano oil is a "hot" oil... it should be diluted 10:1 with a high quality vegetable oil when starting topical use.... see how you tolerate it...everyone is different. If you experience red, itching skin, dilute more or discontinue use if very bad.
I would NEVER put Oregano oil (even diluted) near my vaginal area... it hurts to even think about that... which is why I take it internally.
Again, 100% pure essential oils are mandatory for internal use.
Platelet Rich Plasma Injection Therapy
Posted by Ocean51 (Carmel, Ca) on 06/27/2016
★★★★★
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.
Vitamin E, Lavender Oil
Posted by B (Ca) on 06/20/2016 31 posts
Could you please post how you used the oils, how much...
Honey
Posted by Te Ao Marie (New Zealand) on 06/08/2016
How has the honey treatment been going?
Colloidal Silver
Posted by Elisa (Utah) on 06/06/2016
★★★★☆
For lichen sclerosis: I'm happy to see someone else on here trying colloidal silver gel. I have been using this also and it has helped a lot.
