Lichen Sclerosus: Symptoms, Treatment, Self Help

hello do you know of any group LS I found one on Yahoo but you have to have yahoo email. I would love to have price group.

Thank you so much for this information! I am a week shy of 26 and have been dealing with LS for 13 months now. I haven't had a flare up in a while, but intercourse continues to be somewhat painful and I get small tears near my anus that are so, so hard to heal. I am going to my local health food store tomorrow to find some of the things you suggested! I already use Clob about 1-2 times a week and Emu oil when not using Clob. THANK YOU! Your honesty is a blessing to me!

I wad diagnosed last year with LS on my inner wrist and inner ankles and my dermatologist put me on 2 topical, vectical and desoximetasone my spots are no better or no worse but now I'm sure I have LS on my vulva and anal but our insurance is locked up cause of 2 previous claims I'm trying to get straightened out.

So I've been self treating with the topicals 2x a day and putting coconut oil on a couple of times during the day and using either Vaseline or balmex as a barrier so urination doesn't sting so much. I took Benadryl last night yo help with itching and sleeping and it seemed to helped.

I don't know when I can get into see doctor do this site has been extremely helpful.

Donotfear did you have loss of features or fusing? Did you ever see the features return?

donotfear: Thanks so much for your quick response. I am really nervous that this is spreading or something. I ordered Emu oil too. Do you know if Emu oil is for flare or to soothe the itching?

Hi,

I do not have too much itching but I see there are white spots on vagina and I have a burning pain. Do you think it will help by taking Vit D and turmeric extract? I am really nervous about this LS :(

Hi, do you have any advice for a male with LS on foreskin? Also when you mention all is well does that also mean sexually? Is it safe for me to be using the testosterone cream?

Thank you for the link. The more I research the more I hope I will find a cure but the rational side of my brain is kicking in now so we are just looking for ways to manage it. Thanks again. A great resource here.

My five year old daughter has been diagnosed with LS. And the cortisone creams and ointments seem to make it worse (if we can even get it on). She screams in agony when it is applied. We are going to try a bunch of the holistic suggestions listed and are hoping for some relief for her. It is so hard to see your little girl unable to sit because she is in pain.

I was diagnosed with a lichenoid dermatitis, they are unsure right now if I have LS or LP. I have been using compounded clobetasol ointment for about 6 weeks with no improvement, if anything I have more pain than before. My derm has been urging me to stick it out for two months before giving up. Donotfear, I was wondering about how long it took before you saw improvement with your regimine. I've used estraxe before in the past with marginal results, but never the testosterone cream.

Many thanks. JD

Anyone have any ideas about what to do to help heal the tears? I've had one for about a week and it just isn't getting better.

Try Betadine (a topical ointment containing iodine). It has helped me manage LS symptoms where many other things I've tried have failed. I have been vitamin D deficient and am interested to hear other LS sufferers need to take vitamin D. I must resume taking this vitamin and getting more sunshine.

donotfear was You recipe: Clobetasol Ointment: use once a week.

Estrace Cream: use 3 times per week.

Testosterone Cream: use twice week.

Daily: Vitamin D-3 4000 IU, Omega-3 Fish Oil 1,000 mg, Turmeric Extract C3 Complex 1,160mg

It woked.

Help me a lot of bath salt dead sea 20 minutes 2 days a week.

Today, autoimmune diseases like LS vulva and kraurosis do not have a specific origin, attributed to the skin is deprived of epithelial tissues. Determination of their status as precancerous conditions today in the international practice is removed, that is happy. All autoimmune diseases occur mainly as a result of a system failure in the body and genetic predisposition that may be involved as a result of prolonged stress has a negative impact on the whole to the main functions of the body - Immune, hormonal status, and also the psycho-emotional state, which is characteristic of the female body.

Conventional methods to treat them is almost impossible. Need to change the way of life, to avoid provocation of the disease, no Coffey, no sugar, no alcohol, regularly use vitamins and minerals, to monitor the vascular system, get enough sleep - to limit the sources of stress.

Therefore, the correct way of life thing! Good luck and take care.)))

WOW donotfear - thank You, thank You very much!! I used your recipe, whiteness, pain and itching disappeared .

Hi donotfearm,

I read your information on LS and plan on ordering Vit D, Turmeric , and as well as a probiotic. However, I wondered if you heard or experienced yourself eating a low oxalate diet or a low histamine diet?? I've been reading all kinds of different opinions and experiences on the web and lots of women are experiencing relief from those diets. Also, how did you find out about Vit D, Fish Oil and Turmeric? How did you know to take them to get healing? Is you LS completely gone now?

Thank you for help!

Hey ladies! I was diagnosed in January 2007, the same month i was married and developed a sever case of depression that lasted about 2 years. I remember looking up information about this topic around that time and didn't find much. My doctor told me to basically deal with it and use lubrication for the tares. But the problem with that is not only do i have LS, i also have EXTREME sensitive skin which causes rashes to anything that includes perfumes, chemicals, ect. I have to take water baths (no bubbles), i cant use soap down there, and hypoallergenic items, doesn't work either because its still considered "chemicals". It was miserable which was why i was depress, so sex became non-existent to a husband i just married.

Going back to my LS i used the steroid the doctor gave me but it seem to make it worse. So i began looking into natural care and healthy maintenance, since there is no cure. This is what i used:

Wheat Germ Oil (for rashes and tares)

Daily Multi-vitamin (for Vitamin D and Immune system)

Vitamin C chewable (Immune system)

I took these items daily for 3 years and i've had great results so far concerning daily maintenance. (Warning: TMI alert!!!) Before sex i use the Wheat Germ oil as a topical on my area with a natural lube for comfort and a chewable Vitamin C about 30 minutes before. Immediately afterwards, i wash and place another layer of Wheat Germ oil on it to prevent tares and you know what, it worked! My husband and I acually went on a real honeymoon last year and i used this method and was able to enjoy myself sexually, which was something that never happened since i was diagnosed.

Im thinking im going to change things up after reading this forum, and add the Tumeric to my diet and switch from Wheat Germ oil to Aloe Vera oil because of the Wheat Germs strong scent, and see if that works just as well. Anyway i've said enough and i hope my essay wasn't in vain and can help someone who's wearing the same shoes. Good Luck ladies!

I have been diagnosed with this. But not had biopsy or blood tests nothing. just that you have LS on your anus diagnosis when i went for what i thought was piles.

I've just stopped the steroid cream as the doctor told me to do so as the itching has stopped. Been using for a month. But I have an uncomfortable vagina, the doctor said it all looks healthy though, after 2 examinations. She said if I come to see her again she will send me to a sexual health specialist?? Tonight the join between anus and vagina area is sore. Is this because I've stopped the cream?

Also what dose of vitamin D should I take. I can also see LS being stress related. This year my stress levels were over the top, I also developed eczema.

I recently read about this in The V Book and some of it sounds similar to what I've experienced. I haven't noticed any discoloration or itching but I tear just below the vaginal opening during intercourse. It's not the most common symptom but I haven't been able to find anything anywhere else that is even close to what I'm experiencing. I have estrace cream and it seems to help things heal up quickly afterwards but doesn't seem to help prevent anything. I'm going to bring this up to my gyno and see if there is anything along this track we can explore.

I have had LS since 2005 discovered by OBGYN by a biopsy. Started with skin discolouration later severe itching and in the last couple of years the vaginal wall towards the anus tears. After delivering my 2 year old with forceps' intercourse has never been the same and both my husband and i are sufferring from it. Now im expecting my second child and terribly fearing the delivery and what's to happen with this preexisting tear. I should mention obgyn has given me creams and ointments and steroids to apply but nothing has helped. Now the Dr says they will stitch it up properly but not guaranteed to get "my"obgyn at time of delivery...anyway so doing my own research to see what I can use to toughen the area myself. I just read elsewhere massaing the area with coconut oil will help-lets see....

well what interesting reading I wish I found this sooner I have had a number of trips to the Doctor and to the gynacologist numerous swabs and biopsys all negative result yet they are still adamant this is what I have, well the Dermol steroid cream (Clobetasol) no longer works for me and they refuse to prescribe anything else and the itching drives me nuts I have been to natural health clinic and natural health shop nothing seems to help for me I am so fed up, I am 45 so part of it is fluctuating hormones but the doc wont accept that either and I do no my own body and what it is doing or not doing !!!

I have found many of the treatments here interesting. My daughter has LS so I have been looking into simple treatments for her. A regimen of many supplements is not realistic for us. Also, she reacted with redness and soreness after applying steroid cream and steroid ointment for 1 week each. Before we discontinued the cream, we tried aloe vera from the plant and found that it immediately stopped the itching. So now, we have purchased pure aloe vera gel and are using that 2x a day. I am going to look into her taking vitamin D after read possible side effects of too much of it. A couple questions...1) What does the tumeric extract do and why is it necessary in addition to the aloe? (Trying to simplify!) and 2) Do these remedies just help the itch or do they also counteract the thinning/cracking of the skin? Thank you!

So helpful thank u. It seems Im allergic to clobetasol. This saddens me because it's supposed to be the best way to treat LS. I really do much better without it. It's in ointment form. I tried using microscopic amount mixed with e. Now what?

I started having symptoms when I was 25 and self diagnosed by doing a lot of research online (at the time, it was difficult to find much information on it). No one had ever heard of this autoimmune disease and everyone I knew thought I was crazy...they all just thought I had a yeast infection, which I knew wasn't true. I had a biopsy in 2008 and was officially diagnosed with LS when I was 28. The vitamin D deficiency makes complete sense to me, as I was severely deficient at the time. I never have consumed much soy or artificial sweeteners, so those don't really apply to me. But stress is a HUGE factor. When my symptoms first occurred, I was very stressed and now I get terrible flares when I stress too much. Emu oil is definitely soothing and I'm going to have to try the Turmeric Extract, it's one that I hadn't heard about. My doctor did prescribe something called Hydroxyzine for itching, which is like an antihistamine and it seemed to work pretty well.

I do want to add that for those of you reading this who think you may have LS, please don't be embarrassed or scared to talk to your doctor about it. It took me three years of being in pain and wondering what was wrong with me to find out for sure. This is something that while it can't be cured, it can continue to worsen if it's not treated.

Thank you, donotfear for writing a great article. The more info that we get out there about LS, the better!

just read some of your notes. have been up since 5:00A

M withjitching and going out of mind. just been told by my doctor (thru blood test) i am low in Vit.D, so off to the store today for that, and Tumere Extract, coconut oi. willing to try anything, driving me crazy, also i think i have it in the anal area, hemmeroids driving me crazy with the itch too. all good info. thanks

I'm sorry to say that your description of lichen sclerosis is not accurate for all patients. I've had it since a child, it was only diagnosed aged 35 and it hasn't really caused me any problems, especially with lovemaking. There is just shrinkage and I was diagnosed with several biopsies. I use a steroid cream and wash in aqueous cream and there is no problem.

not been diagnosed yet waiting for my hospital app at present but my useless doctor informed me yesterday there was nothing else for me but dettol and a scubbing brush or thrush cream well seeing its not him walking the floors at 3 in the morning

My bottom feels like razor blades are cutting into me when I walk sometimes and this clobetasol cream amping up the problem. So glad to find some practical suggestions , my gyno just reading the mayo clinic web site I guess. Testosterone creme puts me in orbit- estrace is soothing but not sure how healing. But the anal problem is different and worse than the vulva. eating spicy foods makes worse for sure and who can avoid those these days! I am just in disbelief that this cannot be easily dealt with . I just wasted- lot on meds I cannot use. Have had this for 20 yrs plus. Miserable when it flares. Thinking tomatoes may cause it-

donotfear:

Thanks for the information. The high dose of vitamin D I'm on will be lowered when my level is back to normal. I found out so many interesting things from this new doctor. I have been diagnosed with osteopenia several years ago and have been taking calcium + D. She told me to stop taking my calcium temporarily because with my level of vitamin D I'm not absorbing the calcium anyway.Once the levels come up then I can resume taking it. I'm not taking Turmeric extract. Where would I be able to purchase that and also the organic coconut oil?

I also have a question. Has anyone experienced severe bruising in the genital area? My gynecologist here insisted on doing a biopsy even though I read that that is a common symptom of Lichen.

I'm planning on making one more visit to my current gynecologist just to show her how much better I am (no thanks to her) before I find someone else.

One last thing the new doctor is an internist, not a gynecologist or dermatologist, and her specialty is Lichen and ways to get rid of it.

I am post-menopausal and was diagnosed with Lichen Sclerosis about 6 years ago. My gynecologist prescribed Clobetasol and Estrace cream. I had such sensitivity to both that I stopped using them. I asked the doctor to pescribe the clobetasol ointment instead and that worked better. However, she told me that I just needed to learn how to deal with the Lichen. It's lucky that I decided to do some research for another doctor and found myself a women in Manhattan who specializes in Lichen. Did any of you know that prescription drugs sap your vitamin D levels? My vitamin D level is extremely low so she put me on a 12 week regimen of 50,000 iu 3 times a week. I just past 6 weeks and I can't tell you how much better I feel. The skin that was so white is now returning to pink. The doctor is really pleased with my progress. To me the most important thing she did for me is give me hope that I will be Lichen Sclerosis free soon. My advice to all you ladies out there is to find a doctor who knows something about Lichen Sclerosis and is willing to help you. Don't wait 6 years like I did.

try this - this comes from someone (me) who has suffered Vulval Lichen Schlerosus for a LONG time and this basically cured it - before bed, boil water in a mug in the microwave. take a paper towel and fold it in quarters. when the water is boiling (about 3.5 minutes), dab the towel quickly in it, then press it QUICKLY (or it will burn) to various areas of the vulva (the itchiest areas) - even the anus (at the end!) if this applies - dab it - and keep dunking in the water, repeat, etc - and yes it will sting a bit, we're talking over 190 degree water ladies :) cover as much of the vulva as possible. may take 5 minutes or so. move quickly or the water will get too cool and it needs to be HOT. basically you have now "burned out" the histamines out of the area, and the histamines are what cause that nightmarish itch at 3, 4, 5am - you know what i am talking about ladies. next, spread a super thin (super thin) layer of "benadryl cream" all over the vulva, and then a thick layer of vasolene gel all over the vulva. "joila," you have the best anti-itch protection you can think of for the whole night. (side-note - do NOT use cortizone cream - it really is bad for you and causes more long-term problems than it does benefits.) next - take 25mg of diphenhydramine tablet, about 3 mg melatonin, and - nite nite. knocked out, itch free. do this for a week and, if you do in fact have Vulval Lichen Schlerosus, it should be on the way out if not gone by a week. in the mornings, repeat the hot water trick and benadryl cream (but probably no vasolene.) avoid waxing, shaving and trimming for a week to let your skin be left alone. best of luck and i would love to hear how this works - post a reply! - EA in Los Angeles

Have had symptoms for 7 years and just diagnosed a few weeks ago. Using dermovate ointment and it's burning like hell on skin that's already burning. What I don't understand is my gynaecologist said this was a condition which was easily treated and yet on the web I'm reading something entirely different. I have pain, itching, soreness, feeling of needles and pins been stabbed into me. I will try the vit D, as I feel also that if anything is going to help it won't be steroids.

I just tried tea tree oil and it has stopped the horrible itching and burning! Thank you soooo much for your info. I am 63 yrs old and female. No s relations for fifteen yrs. The tea tree oil is very cooling, does not burn or sting, first sign of relief in 4 wks. Again thank you! What caused this? in the first place?

thanks

Very informative hub~

The information about the natural oils and remedies are very good!

This is such an informative hub. Great news. I have a friend I must bookmark this for and I am sure she will be glad to get the information about the natural alternative solutions you have mentioned. Thanks for sharing.

Thank you donotfear - I got your email and I really appreciate the information.

This was very informative donotfear. Like Hello, hello, I have never heard of this before. I think I would prefer the natural alternatives to the steriod cream. Since my little one has eczema, on rare occassions I have to use steroid cream on her break outs and she voices that it burns - I can only imagine what a steriod cream would feel like in such a delicate area! (I'm sure a steriod cream would only be used in the event the condition is really bad).

Thank you for the great information.