I have mine under control using a protocol found on a white paper from a doc in CA. It is:
20 min. hot bath every night for 6 weeks, immediately after, rub pea-size amount of clobetasol in for 90 sec. No less. Then 20 min Hot bath every other night for 6 weeks, immediately after rub cream in for 90 sec. Then 2x a week for life.
This has worked for me but I want it gone. On the relations part, idk cause I'm too worried to try.
I'm going to try some things I found today on here but wanted to post this for the lady who is having a hard time & can't get it under control.
The doc had a video showing how getting the thicker type skin down there hot via a 20min bath softens the layers then rubbing the cream in for 90 sec helps the cream Penetrate multiple layers. I have no itch. It's amazing & I'm very happy but I would really like to find a way to not have to use the cream at all.
Good Luck Ladies & I hope this helps someone.
Cold Water, Evening Primrose Oil
By VJ do you mean vulva?
I have found that the burning sensation I get from Lichen Sclerosus (biopsy diagnosed) is alleviated by Vitamin E oil! I just apply to my “hot” area as often as needed. Amazing relief. I have a steroid prescription too, but I'm concerned about using a product that tells you to use as little as possible. 😳
Can you tell me how you are doing after the TULIP procedure?
I am having a hard time locating folks that have had the procedure +1 years ago.
Any info would be greatly appreciated.
Can I also get a link to o shot providers? Thank you.
I will be having biopsy tomorrow but Dr said all my symptoms point to Lichen sclerosus, I have taken MMS in the past, but this pain has caught me off guard, it's like my inmune system has gone haywire, so I will start doing dlsitz baths with MMS, the new version protocol is CDS or Chlorine Dioxide, protocol on how to make it is on YouTube, Dr Andreas kalcker shows step by step how to make it in its purest form. There's also a spray protocol to dilute and use on skin like bacterial vaginitis, so I did do a sitz bath to nite with baking soda, warm water, helped a lot, the creams I'm still researching which to use, organic coconut oil is my go to cream, but needed one like a barrier to help while sitting, I tried Vaseline with Shea butter and it works pretty good, the only thing is gotta reapply after each pee, washing thoroughly, but I'm hopeful that MMS will cure it completely, it got rid of my pollen allergies a while back and helped me with the covid virus back last March.
Ozonated Olive Oil
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.
The Carnivore Code written by Dr. Paul Saladino has all the science/know how you could ask for. He also has a website with loads of info. Watch some of Strong.sistas youtube videos. Here is a link to one that describes what they eat in a day on the carnivore diet, https://www.youtube.com/watch?v=k9C2O7F1UA4 .
They are a lot of fun to watch. They have been eating this way lots longer than myself. I'm so new and feel uncomfortable as I am such a beginner. The important thing here is, my crotch is normal now except for the scarring. It feels normal and behaves normal in every way. There are also lots of facebook pages on the carnivore diet; Women Carnivore Tribe, Carnivore for Beginners. I just found Strong.sistas and have learned a lot from them but you can get direct answers to your questions on the facebook pages. Finding out about all the toxins in plants to protect themselves from being preyed upon was an eye opener.
I've been organic and very healthy eating for years, not vegan tho but mostly salads with chicken or some sort of protein and a carb like sweet potato. You'll read a lot of healing stores from people who quit plants and went carnivore. It may not be for everyone but my LS took a quick nose dive and has not returned. My eczema is nearly all gone, just discolered skin. Lots of other subtle healings going on and I intend to stick to this diet, at first, for 3 months to see but the improvements are just great so am sticking to this diet for at least a year.
Good Luck on your journey and if you have LS, I pray you manage to get rid of it!
Robin, this is amazing! Please share with us a typical day's meals, and update after being on this diet for a longer term. Blessings to you!
Hi All, want to share my story so others may benefit from my struggles.
I had LS for more than 10 maybe 15 years. Saw my gynecologist (no idea of what it was); saw my skin doctor who did help and I can't remember what the ointment was but could only use it for a short amount of time, 2-3 times per week for a limited amount of time. This did take the itching away but the ointment was not healthy to take every. single. day. Which is what I needed to eliminate the itching.
Sooooo, I quit using it and suffered, for years. I tried all the diets, no sugar for more than 5 years, no gluten which I'm still off both these. Sometimes, no sugar/gluten would help but then it would flare up and no help again. I had the paper slits on both sides of my labia, one side was always worse than the other. The itching was INTENSE! Then the pain from the slits or the itching too much would be intense...AARGH.
Ok, so fast forward to today, errr well, 2 months ago. I read about the carnivore diet many years ago and this was one I had never tried. 2 months ago, I tried it...100%. Amazed me. 3 days after starting the carnivore diet, 100%, the itching stopped and has never returned. I still have the paper slits scars but there is no, opps repeat here, NO itching! None, zero, ziltch! And, it's been over 2 months with me being on the carnivore diet with only one minor cheat (hot herbal tea, 2 cups, with 2 hours inbetween) terrible reaction but still...NO itching. The diet is easy but greasy. No food craving...none.
The itching has never returned. My eczema rashes are nearly gone, just discolored skin. They have flared up during this 2 months but I associate that with loss of fat. I've lost 22 #'s and feel great. NO ITCHING! Heaven. I truly hope this helps someone.
Is the borax gritty when you just apply it directly to the vulva over the oil? Does the borax powder dissolve between uses when directly applied? Thanks!
Borax and Olive Oil
This works! Thank you! Used coconut oil with Borax and that worked also. Borax needs a good carrier oil.
Borax and Olive Oil
I don't really think about ratios. I keep a jar of each in my bathroom, apply some olive oil, and then apply a little of the Borax. Keep it simple. Find what works for you. Don't use so much olive oil you're dripping, or at least wear a pantie shield so you don't ruin your underwear.
Borax and Olive Oil
Can you please tell us the Borax to olive oil ratio.
Borax and Olive Oil
Olive Oil + Borax = LS symptoms gone. Seriously. I can't remember where I first read about using that combination, but it works. Just plain olive oil (not EVOO) and borax applied to the vulva 2-3 x per day and every symptom is gone. And it worked fast. I continue to use the same remedy to avoid any return/flare-up, and I'm doing really well. Back to normal and feeling so grateful.
Beebs, Can you tell us whether acidicum nitricum was a remedy specific to you/our constitutional type, or is it a remedy that is known to work for anyone with LS? I think your homeopath would know this. Thanks for sharing.
When I went to my GP with symptoms and white patches I was told I may have thrush .. a swab was taken and sent to the lab. In the meantime I was given a cream to relieve the itch ( Of course it didn't relieve the itch..). Later that week I met with my friend .. and it was my friend who told me I had LS... she had the exact same symptoms but hadn't been diagnosed quickly. I went back to my GP and she confirmed that I did indeed have LS. I was prescribed an emollient to use when showering/washing and a steroid cream.
I used both and the steroid cream did help but I didn't want to be using it on a daily basis. My GP referred me to a homeopathic doctor and I was prescribed a remedy called Acidicum Nitricum (nitric acid ).
I take this remedy daily and also use the emollient on a daily basis .. Since I started using the homeopathic remedy I have only had to use the steroid cream on a handful of occasions. I tend to use Organic Aloe Vera Gel in the first instance. I think the fact that I was diagnosed early ( albeit through my friend ) has helped keep symptoms to a minimum. I was not aware that LS was progressive and have gained knowledge from reading others posts. My friend was mis- diagnosed on several occasions and as a result has many problems associated with LS.
There are many things which can trigger LS flare ups the main factor being stress. Diet can play a big part in alleviating symptoms. Everyone is an individual and if you find something natural that helps you then go for it.
Carol, I agree with your statement.
I was diagnosed a little over a year ago, and like many women, I've tried a variety of steroids, creams, potions, lotions, and salves etc.. with little to no relief. After having a severe flare 3.5 weeks ago, I was desperate and refused to go back to my 3rd gyno, who was no help at all. I researched and googled in desperation, and found several forums and Pinterest articles, where patients have treated it as a leaky gut/ and fungal overgrowth.
The remedies were all similar so I tried them! • I started to drink 1-2 tablespoons of Organic apple Cider vinegar with the mother every morning with 12 oz of hot water on empty stomach. • Purchased raw organics vaginal probiotic taken by mouth. • cut out sugars, gluten & diary • increased my vitamin D3 to 4000 ius daily as I was low confirmed by my Gp . • took vitamin K2 with D3 as it helps absorb the D3. • bought Nordics omega 3 supplement • raw juiced mid morning • purchased black African body wash • increased my b12 • drank a non dairy probiotic drink everyday • took 1 500 mg dmannose with cranberry daily. Helps with die off effects of fungus/yeast • applied over the counter clortimazole nightly on the white patches and labia • only used a little Cándula salve on labias and clit for moisture. • started taking collegen powder. • started taking plant digestive enzymes • drank lots of clean purified water After 5 days I got the relief I desired. The white patches are all gone, and the atrophy is much better and my tissue all around looks healthy and pink! I had no idea in my case that yeast/fungus was a factor. Who knew? I was even tested for it in the beginning.
It came back negative! I don't trust doctors. I don't think they are knowledgeable at all about this. I'm so thankful for forums like this.
Carol, do you eat wheat or other grains? Are you sure it is LS? Have you had a biopsy? Thanks.
I have found diet extremely important for lichens healing. I eat a vegan diet with salmon, no sugar, alcohol or night shade vegetables, I also use apple cider vinegar and water sprayed on after urinating. I bath in baking soda every second night and I use only natural products for cleaning. Don't scratch. I am healing more everyday and have no itch.
I just apply the urine topically when I pee and let it dry naturally if I have the time or pat excess off with toilet paper. A probiotic and/or anti-candida enzymes before bed also help w/ night-time itching. I learned about the urine tx from a traditional healer who did not charge me for the advice. Needless to say, this remedy is free and readily available. It's the most effective thing I've used in many years of dealing with LS.
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.
Instead of any toilet paper, use toilet seat bidet— Brondell Swash SE600 Bidet Toilet Seat is a good one. There are many types out there. Using a toilet seat bidet is the only Way to go. You will always be totally clean. Will pay for itself and save a lot of trees.
Chlorine-Free Toilet Paper
Get your non-chlorine TP at Trader Joe's, a wee bit cheaper
Chlorine-Free Toilet Paper
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.
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
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.
Words have meaning. Also see Leaky Gut - the true cause of all disease.
I don't have LS, but am wondering if anyone has used Colloidal Silver spray / Colloidal Silver Gel?
Can you please post what kind of neem cream please!
Have you or anyone else tried comfrey skin cream for Lichen. And I am looking for a good Red clover cream or salve to apply to the vaginal area...any suggestions please. My lichen has now begun under the hood of my clitoris and I am desperately trying to save it from closing over. Thank you to all!
Tulip Treatment at Coyle Institute, Pensacola, Florida.
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.
I say this, not to scare you, but from experience.
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
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.
I have an appointment at Coyle Institute with Dr. Coyle. Having the Tulip treatment. Similar to O-s but supposedly better.
Apple Cider Vinegar, Lavender Oil
Buy organic lavender oil on Amazon or EBay.
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
Ann- I just read your post from years earlier. I am next door in Woodstock and similarly situated re the LS. How are you?
Baking Soda and Borax Bath
Healing Lichen Sclerosis:
1/2 cup baking soda, 1/2 cup 21 mule team borax in my bath water every other day works for me.
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!
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 don't see a link for the providers - can you send it to me please or post it- thanks
How about cbd cream?
LS Connection to Lyme Disease
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
My acupuncturist has seen a connection between Lichens Sclerosus and latent undiagnosed Lyme disease.
I also have LS. started like white streaks, blisters, pain, itching. It came on suddenly. I had it dx by a Gyno and was told you can only keep it at bay, no cure. I use steroid cream alternately with Aquaphor. Stay away from chlorine, pools, hot tubs as this will aggravate your symptoms. It has started to atrophy and my labia is almost gone. It really hits your confidence as a women and sex can be painful. I recommend letting your significant other see this condition, let them know it is not contagious. They need to be gentle with you and if they love you as my husband does, it helps alot with self esteem. I also am frustrated that there is no studies on this as it affects so many women, men. I feel it is from trauma to your skin. I was a gymnast and rode horses, farmed etc. I also had a 9lb baby and had an significant episiotomy. I make sure to wear only cotton underwear and all natural soap, no perfumes etc. I feel also I am totally willing to try the castor oil mixture. Good luck to you all, be nice to yourself it is not something we ever thought we would get.
Dear Natalia, it sounds like you really know a lot about this disease! I have learned so much from reading on this site. It helps me a lot as I have just been diagnosed. Could you please give me the specific amounts of what you recommend? After urination, I would like to have something to "cool off" ..
I believe in essential oils and use them often so the one with frankincense and tea tree oil would be beneficial. Please let me know how much of each to use or some kind of recipe would be great!
Thanks so much!
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~
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
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
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...
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.