Multiple Remedies for Lichen Sclerosus

I don't see a link for the providers - can you send it to me please or post it- thanks

Can I also get a link to o shot providers? Thank you.

Hi, that you are in LA, have you heard of Stem Cell Lift by Dr Nathan. I have been googling this treatment and people with LS have had success.

Is it still working and any changes in the fusing?

I was just recently diagnosed with Lichen Schlerosus. Fortunately, caught it very early because I was itching for a couple of weeks, thought it was a yeast infection and treated it that way but still made an appointment with my OBGYN. He immediately diagnosed it as LS. I was surprised because nothing had changed in my life, not even my soap, but he said it happens often post-menopausal because of a general thinning of the tissues around the vaginal area due to drop in estrogen, etc. (Of course, this doesn't explain those who have it pre-menopause). However, this list has served me greatly because I believe in tackling the symptoms somewhat aggressively early with a little western medicine (the steroid cream) and then figuring out how to holistically stop the cause internally. Based upon this list (thank you very much) I drink red clover tea twice a day (which supplements the immune system and provides a little estrogen to the post-menopausal body), eliminated sugar and dairy (which I had started to do anyway prior to this event), take Black Seed Oil (which supports the immune system and provides a whole host of other amazing benefits, take a probiotic to replenish the good bacteria, take a teaspoon of Carlsson's lemon-flavored Cod Liver Oil (also a host of amazing benefits for women) and eating whole organic foods (no processed foods). I also use organic coconut oil as a regular lubricant in between the steroid treatments and take a daily sitz bath infused with organic apple cider vinegar (with the mother). I have been feeling much better and it's just been the third day. In addition, I got rid of my regular panty liners and got organic chlorine and plastic free cotton ones from the health food store. I believe we are subjecting our bodies to so many chemicals in an unregulated fashion...at some point the body is going to rebel. While the OBGYN said this condition is relatively common, you have to ask yourself why? It makes no sense to me but I'm going to treat the symptoms and my system and have faith it will clear up. At the end of the day, the body tells us we have an issue with what we are doing. If we listen and address both the symptoms and the suspected cause we are only going to benefit ourselves in the long run.

Itched for months and finally was diagnosed with LS. I used steroid cream to get the itch, sores and bruising down. Now I'm just using zinc oxide diaper cream every few days and have not had to use the steroid cream again. I'm also squatting far forward to urinate straight down without it touching my genitals, as a precaution.

I am going to start using legal CBD oil as I read LS could be autoimmune and CBD is being used in autoimmune issues. Also, after reading here, I'm going to start gluten-free too.

I'm doing well with just the zinc oxide for now, but I really don't want this to get worse as I've already had some fusion and scarring and I'm pre-menaposal (45 years old). I'm with a wonderful supportive guy, so anything I can try, I'm going to give it a whirl! Will check in on CBD and gluten-free process as I experiment.

I have had this condition for years since I was a young girl - I was also a molested child and went on to become a raped teenager, I have been given every medical treatment under the sun and nothing has worked for me I am in my early fifties now. I have been experimenting with Kawakawa, batheing in it and T-tree oil both have been useful in soothing the area, my itch drives me crazy at night, . I see I need to change my diet, which am going to do right now, thats the sugar, wheat, gluten, dairy. I have only recently started using apple cider vinegar in my bath water, gosh this sight is a dream come true for me... thanks so much for this information.

Hello, I too work in the medical field, have you had any success with new insights from MD? Do you visit Pubmed frequently? They have found the tissues to be abnormally deficiet of antioxidants. When I use them (above) it really does decrease the symptoms. Lycine works too.

Mine stopped reacting, skin was pinking up with oral intake of vinegar - the very same reaction with MS and vinegar. MS is an autoimmune disease. Vinegar inhibits a reaction of the autoimmune.

Western medicine has found that some of the medication used for anti rejection for organ donors are working but not resolving it.

Does the Estrace stop the progress of the disease?

For research purposes do you have Estrogen dominance? Thyroid link?

I was hoping Ted would comment, maybe he has something to offer.

I have what my doctor described as 'Extreme LS' this is where I have LOST most of my vulva and all that remains is the opening ( very small) and part of my clit which is not very painful to. The lenght of my vagina has shrunk to just 2 inches from top to end and if I lose the remainder of my clit I will have to have some sort of mobile tubes to incert when I need to pee.

I have tried everything, cremes lotions ACV, oils, you name it I have tried it including Perrins offerings, even used steroid cremes. Nothing worked. Todate there is NO cure and may not be one in my life time (I am 67) but there is some trials been done in Sweden or Denmark where they are trying out natural Progesterone creme. , available only by script in Australia ( big Pharm dictates here, so Aussie and NZ have to buy from USA). You also have to be careful using Progesterone if you are postmem, which I found to my cost, on 2 seperate days after two small dabs I was in agony with miscarriage/labor pains and the need to bare down, this lasted over 1/2 an hour till I had a show of blood. It turns out that I have a medium fibroid in on the back wall of my womb and the Progesserone acted a prelude to esterone which fed the fibroid and caused it to grow and as a postmenopausal woman that made my body think I was pregnant and it had to go. Thats what my last gyno said, but there again she said I had vaginitis when I first visited her for the itch and dryness 2 years ago. My GP has now got me on DermAid 0.5% which is not so harsh and it helps with the itch, I also sit in a baby bath of warm water with 1/4 cup ACV 1/4 cup Bicarb soda, and 1 cup Magneesium Chloride which I buy from food ingredient suppliers and I find this is works as well as anything I have tried so far and all 3 are good for the body anyway. I will try Argan oil in the blend next for the dryness.

Wanted to let everyone know... I started using Niacinamide and Lycine (mixed it in a small bottle of pure water) spraying it on the LS and then applying Argan oil, my symptoms have decreased by 60%. I also quit drinking coffee and the skin on the backs of my arms and legs cleared up. Not sure if this was an allergy and LS is connected but am not ruling it out.

This is such an awful disease. Hang in there.

Hi,

My symptoms occured exactly like Dee's. I don't have itching or any white spots. But I do have some atrophy, white thinning skin in the folds, some past bleeding. I'm really upset that my atrophy will never grow back. This will prevent normal, painfree sex.

I was given potent steroids to apply topically everyday for one month, and then down to 2-3 times per week. After six weeks, my skin looks whiter than ever and I think it's gotten worse.

I took myself off the steroids, but needed something else to replace it. I wanted to do an all natural solution, so I searched this website as well as many others. After much research looking for women with my similar symtoms, I decided to try using Red Clover infusion/tea drinks. Everyone has recommended one quart per day. It has many anti-inflamatory properties as well as healing properties. Research has also showed that LS may be helped by megadoses of antioxidants. So, I went to the heath food store and bought the strongest antioxidant powder mix I could find (they work better, absored more than tablets). That's what I take internally.

As for what to use externally in the vulva area, I decided to use Neem cream followed by Organic Coconut oil (comes in a large jar, very soft and melts in your hand). Both have amazing healing properites, and the coconut oil replaces the essential fatty acids that the skin in this area desperately needs. I use coconut oil in place of everything I would have used butter or oil for, for example, use it for cooking eggs, baking, etc. It also can be used on the skin. I put it all over my body after the shower as a moisturizer. It is awesome! My nutritionist raves about it and uses it for everything also. It's a superfood!

I have used these drinks and creams for two days now, and my skin is already pinker! I still have some white skin in the fold area, but I am hopeful! Before this, I had an almost totally white vulva! I have also thrown away all my sweeteners with Aspartame, and will use only Stevia. I suggest everyone cut out the sugar, even honey. Sugar is sugar, and it creates an imflammatory reaction in the body.

It's worth a try, anything is better than steroids! Let me know how it works for you.....

I, too have heard of the coconut oil and already use it for my omelets and other cooking. I have had LS for 12 years (43 years old now). The labia is fused for the most part on both sides, with pale, thin tissue. The majora has shrunk a little, but is still somewhat pink. In the beginning, I was put on clobetasol, etc. This was not good. My symptoms really didn't get better, and it thinned the tissue more. I had a dermatologist who put me on Metformin crushed in Vaseline that seemed to help a little. She wanted me to take it orally, but my GI sx at the time prevented that. I have started taking Mercola's Krill oil which has all sorts of backing as an anti-flammatory. Hopefully, the combination of making my body not so inflamed inside, and the coconut oil outside will do the trick. I also have Raynaud's. I agree with eliminating nutra sweet, etc. I eat a low-carb diet. I think we now have more auto-immune than ever, and we need to look at the state our bodies are in. I wish everyone the best. Hopefully, there will be a cure someday! Thankfully, my husband is very understanding :)

Lynn, read your note with interest. This is an awful disease.. I wonder if like the bee's our immune systems have been crippled by the pesticides... Food for thought. What I found strange.. I didn't have these problems until I moved to a farming area. I formally lived in the Mtns and drank spring water... I did find that Scar reduction cream (zinc oxide) with the tea extract totally knocks all the itch/thining and any progression of fusion of the tissue. Should have figured this before as this is for overreactive skin tissue. It does not cure it but I don't have to apply every day, just 1 x every 2-3 days. It is strange all of us are getting this....

I have had LS for 6 years, following severe physical trauma and mental anguish. I am athyroid, a thyroid cancer survivor. Part of my labia is gone, eaten away. The clitoris is covered by fused labia minora. I have been using Clobestiral and hormone cream every other day. I still have outbreaks of red, thin and itchy skin with bleeding. White patches come and go. Now, I am having deep pelvic pain where my ovaries used to be. Had a total hysterectomy for severe endometriosus 30 yrs. ago. I have no orgasmic response, but do get aroused to some extent. I do not eat wheat, drink coffee and avoid sugar. I try to use all natural products. I can't tolerate underwear. I am miserable and the Dr. says "see you in a year."

Julia,

From reading through the entire blog, it seems there is something to coconut oil. I'm going to try it. I'm "frigid" from fear of a bloody show after intercourse, intercourse that is always painful. A certain MD forced me to have a biopsy, it was totally unnecessary, as it turned out. There is another product "Yes" - has anyone tried it or heard of it? Active ingredient is aloe vera. I'll let you know if it works to help the atrophy. I feel so badly that you have suffered so much. Let us know if the coconut oil helps, try a little first near the labia and just see how your skin looks and feels before using more. Blessings, Helen

Have you tried coffee enemas? They help with autoimmune diseases and LS is autoimmune. Coffe enemas are also pain relieving and anti-inflammatory. I've been doing one or more a day for two weeks and am experiencing positive results, the condition is slowly improving. I also feel that there is a connection with the disease and the gut, hours before I have a bowel movement, the itching increases. I think that if I improve my digestive health and rebuild my gut flora, this may also heal the skin.

It is so awful that we suffer with this. I do find some help with zinc oxide. If it was a testicular problem, answers would be found

Coconut oil works for me. Very natural.

I have had LS for 7 years. I was diagnosed during the 7th month of my first pregnancy. I have tried so much of what is listed here. I also began using the Perrin's Cream about six months ago. It is by far the most helpful thing that I have tried. I am having a flare up now (that is driving me MAD), and I have had to use the steriod cream, BUT what I find is that the Perrin's Cream seems to help restore health to the damaged skin (by the disease and the steroid creams). Healthy diet is crucial. I am a health nut... When I have a flare up, it is usually linked to STRESS! Stress reduction and dealing with it well is crucial. I struggle with this! I will say that since using the Perrin's Cream, I have only had one flare up. Use the CREAM, not the ointment! The ointment is TOO strong and will burn! You are not alone. I am sorry that all of you are dealing with this also.

Jill from TX:

Your advise is EXCELLENT!! I have done my research and agree with all. I am a LS suffering soul. Perrins cream and your diet recommendations do help.

That being said, I would like to add to this forum some things that have helped me considerably with my LS.

I am certain that mine is associated with the endocrine/immune system. I have enlarged lymph nodes under arm when I have a flare up. I also have hypothyroid too.

In the last year I found a product called I-26 or hyperimmune egg. Started taking this and have had GREAT results, symptoms are greatly reduced. I am planning on continuing this until I find something else. I also came up with a remedy for the pain/itching. Take Lysine in powder form and add to Aloe Vera. Within seconds the pain itching will be gone. I apply this usually 1x a day and it lasts until the evening.

I have had this terrible disease for 8 years and found the lysine trick in a herpes tx. I just tried mixing it in aloe vera and it works like a charm.

I am not sure what caused mine, but it started after I had a hyster and dx hypothyroid.

Again, the hyperimmune egg is worth trying. Just mix it in with OJ, drink down.

God bless, hope this helps some other women.

Thank you for sharing your remedies. Do you apply the lysine and aloe Vera topically or take it orally?

For the LS to stop the intense itching... Take the lysine powder and mix it in the Aloe Vera and apply topically. You may need to start doing it 3x/day until it puts the fire out, then you will only have to do it daily. It worked for me. Best and stay blessed. This is an awful disease.

Finally.. A website that gives me some hope. I have written down EVERYone's suggestions and may have to give up work just to manage this LS!! (I wish). But, thanks all for sharing the tips.. I about to embark on a gluten & dairy (&sugar) free diet, see a naturapath AND try many of the 'remedies' on this page. My wish is to stop the steroid creams.. that stop itching but not the progression.. And keep enjoying sex!!

I was diagnosed with LS two years ago. Pure essential lavender oil in the bath has helped me, and also Perrin's cream. Attention to diet, and cutting right back on sugar and yeast products has also helped. I agree that this is a horrible disease, and sometimes I can't believe I have it, but does anyone know how much research is going on to find a cure? What have we all got in common that would trigger this in us?

What is hyperimmune egg?

Aine, If a person has an autoimmune illness, this would overstimulate the system to attack the body even more.

“Hyperimmune egg is an egg from a hen that has been vaccinated against certain infectious diseases. The hen develops specific antibodies that rev up the immune system to fight the specific diseases included in the vaccination. These antibodies pass into the hen's eggs. People harvest the eggs and remove the antibodies. These antibodies are then used to treat diseases in people.”

“How does it work? – Antibodies contained in hyperimmune egg are thought to stimulate the immune system and help the body fight disease.” – www.webmd.com

I have never used the creams or vagisil and I have lichens sclerosis. I do eat primarily organic foods sourced from local farmers markets along with ranch raised eggs dairy and meat.

I find recent stress has aggravated my lichens, that had been in remission. I will go back to the obgyn for evaluation today.

I will seek more prp treatments and one of the topical treatments on this site. I can't tolerate the steroids. The platelette rich plasma treatment has kept the symptoms at bay for over a year. I will keep my hope and faith that it will push it back into remission. I am afraid I will have to change my work out routine as well. It's a life style thing, I'm afraid.