Hello everyone.....I am sorry that a lot of you are suffering with LS!
I've had LS for at least 7 years now....diagnosed for 5 years.(I am 55) I have tried so many lotions, potions, treatments, etc....I've been reading your posts and will try some of these! I eat organically, eat pasture fed meat and eggs, drink Reverse Osmosis water and exercise.I eat healthy. I am going to try the gluten free diet and see if that helps. I take all kinds of vitamins, etc...a lot of these were mentioned in your posts. I have been using steroid cream....but it has stopped working about 10 months ago....I hated using it anyways......but kept me from going mad. I was using organic, bio-identical progesterone cream..(Natpro).....I didn't think the cream was working, and thought maybe that I didn't use a high enough dosage, but after discontinuing the cream my LS became much worse. I was also under a lot of stress since about that time...so I'm not sure if this is a coincidence or not. I belong to an online support group and some of the women on there say they have had remarkable success using concentrated cannabis oil (topically). Makes one think. I know my doctor would never give me a prescription for it. :( They rarely give people here prescriptions for medical cannabis...let alone the oil. Makes one want to break the law! A lot of the LS treatments are just that.....treating the horrible symptoms that we get....never getting at the cause. It definitely has something to do with hormonal imbalance. Almost everyone that has LS has hypothyroidism...and I think the ones that don't have hypothyroidism just haven't been diagnosed with it yet. It makes me think that maybe we should be finding something that cures hypothyroidism which in turn would cure the LS. I am going to start researching into the thyroid issue. I've been rather down about my LS lately. I hate the horrible itching, the pain, the atrophy.....and especially how it effects my sex life and relationship with my husband. I usually try to be positive and up beat about things......but lately it's been bad.
(Cabarlah, Qld. Australia)
My acupuncturist has seen a connection between Lichens Sclerosus and latent undiagnosed Lyme disease.
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?
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.
I'm wondering if anyone has explored the use of Monolaurin for lichen sclerosis? InspiredNutrition.com indicates it is helpful with yeast, infections, MRSA (even) as well as Herpes and more. Would you mind letting me know your thoughts? thank you
I wanted to share some of the things I have found to greatly improve (don't want to say heal...yet) my LS. I read all these forums looking for things that help so wanted to share what has greatly helped me.
I use boric acid vaginal suppositories. I definitely think there is a candida link here. I had a yeast infection and my doctor prescribed it. You can just get it on amazon though. This is something I do fairly frequently and was a life changer.
Also I've done the O-shot three times. It is pretty expensive, but worth it. Find someone trained regarding LS. The link below lists providers. After the first one, my doctor said I improved by 30%. The third time I got it, there was almost no signs.
The other thing I think is helping is Borax.
I first had LS 10 years ago at the beginning of menopause. Someone once mentioned, what is the relation between a child getting this and an adult. All I could think of was I worked in the dirt and garden, which is the same as a kid playing in the dirt also. So I read about Perrins creme, tried that for a while, but found out about two capsules to try from talking to Perrins. For 5 years I have been taking Life Extension Super Bio-Curcumin and Red Clover capsule once a day. The skin acted better where the ripping open was almost gone and the itch had practically stopped. But a couple months ago I was still itching overnight, so I read your wonderful posts to figure out what can I add to this. ( Also a year ago I added Ultimate Flora probiotic and I regularly take 6 drops of colloidal silver 500ppm in 2 oz. of water once daily.) So I added a soft gel cap of Essiac Tonic twice a day on an empty stomach. I also have added ozonated olive oil creme once a day applied after my shower. Since Christmas I have NOT itched AT ALL!! That nighttime itch was awful! A month and a half of being itch free I wanted to tell everyone.Now, I am still working on un-fusing the sensitive skin. I will write updates if any changes take place. I am keeping my fingers crossed. Good luck everybody, we will figure this out before any doctor does.
Hello, thanks to all of you for the many comments and helpful suggestions re. L.C. I am 60 yrs old and have been diagnosed 3 years ago with L.C.
I read and re-read many of your suggestions and for the last 4 days I have had some relief with the following suggestions: 1 cup baking soda and 1 cup white vinegar in bath and soak for 15min. It has cut down on itching and I'm less inflammed.
Zinc oxide seems to work on decreasing redness and itching ( applying 2x a day) However is it OK to use continually on vaginal tissue?
Also applying cold water after each time I urinate. Started Essiac tea but too soon to access.Thanks, Moira, N.Y.
I have had symptoms of LS for 2 years now and have finally found a way to keep it under control. The symptoms started after menopause with extreme vaginal dryness. Then the vulvar skin breaking, bruising and vaginal atrophy began. I work for a GYN doctor so I knew what was happening to me. I did try Perrins cream which helped a little in the beginning. I vas very reluctant to use any prescription medication, but after suffering for so long I finally tried a very small dose of Estrace cream vaginally once or twice a week which has helped alot. (I did not want to use Steroids). I also apply pure vitamin E oil (found at Target for $5.00) to the vaginal/rectal area everyday after bathing/soaking. I use only natural soap very gently in that area, no bleach on underwear, avoid any perfumes or strong dryer sheets that irritate, no underwear when at home and only lightly blot when using toilet paper. These things have helped me tremendously. Avoiding sugar and taking high potency probiotics do also help. I hope and pray that a natural cure can be found and that the cause of this awful condition will soon be discovered. I have been doing my own research and taking note of the similarities in women who have this condition. Hope this helps someone.
(Toogoolawah, Queensland Australia)
(Ft. Lauderdale, Fl, Usa)
(Kansas City, Kansas)
(New York City)
I am 28 years old female who was diagnosed with LS in Aug 2010. After 2.5 years of continuing Yeast infection and Strep B bacteria since my honeymoon in Caribbean.
I believe after taking many antibiotics and Diflucan, my body collapsed!
I had a blood test and my natural path informed me that I am Lactose intolerant and I have to avoid Dairy and Gluten. I am taking Probiotic and Fish oil (Omega 3) and L-Glutamine (I guess to clean my liver. ) I have not seen any major changes to LS in my vulvar area. Yet, I can feel less gas (stinky gas), diarrhea, bowel movement and no more Yeast and Strep B bacteria.
Yeast: after unsuccessful 2 years of using Antibiotic, I used Boric acid and soaked my body in Baking soda every day for a few weeks which have been very very helpful. Even my husband did it too. I am free of yeast or bacteria now.
LS: I have been using lower dose of Topical cream which was useful at the beginning but not after 3 months. After the flare up and no sexual intercourse for a while because of the pain and itchiness, doctor gave me another higher dosage of cream, I have been using this for 3 weeks now and it is helping a lot. But I don't want to be dependent on this at all. I am young, still have another 50 years to go, can't use the cream for the rest of my life. I don't have any kids yet either.
My research shows that Omega 3 (fish oil), and probiotic are great to use to balance your body and create healthy skin. Healthy diet is another one, have a test or look at your blood group type and see what is better to eat for your body type. I did a cleanse in summer which helped my body to normalize and of course got rid of the yeast.
Also, I have found that Neem oil, Calendula oil, Emu oil are helpful. I have heard from a few professionals about Neem oil and Calendula, but rarely about Emu oil. So I was reluctant to buy Emu oil for my LS. Apparently, some people used Emu oil and it worked but not many professionals know about it.
Yesterday was the first night I used Neem oil and hoping to be helpful.
If anyone has any other suggestions, Please let me know.
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.
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.