Lichen Sclerosus: Symptoms, Treatment, Self Help
Annette Sharp holds a BAAS in Behavioral Science from Texas A&M. She is a counselor and motivator with an empathetic heart.
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What is Lichen Schlerosus?
I'm going to talk about a disorder that's not well-known or discussed much. I'm using plain English without relying on a difficult manual to describe the symptoms to make it more easily understood.
Lichen Schlerosus is a skin disorder/problem that mainly affects the genital and anal areas of women. It's more common in women who are post-menopausal, but it also affects young girls and teens (rarely), and women who are hormonal or pre-menopausal. Nobody is immune to it. Men can have the disorder, too. It can affect any part of the body, but it's mainly centered on the genitals and anal area.
Lichen Schlerosus is not an STD! Nor is it contagious. Nobody knows the actual cause of the disorder, though there is some suspicion it's connected to the body's immune system, hormones, and thyroid function. I read one theory that suggested a vitamin D deficiency could be connected. Age is also a factor in the ailment, as mentioned above. Whatever the cause, it's a miserable affliction that's not fully understood. In additon, not all doctors are knowledgeable of the disorder.
Symptoms
The first and most common symptom in sexually active women is painful intercourse. It may feel like the skin around the vaginal opening is 'thinned out', sensitive, and may burn upon penetration and friction. One woman described it as "...like fire between my legs..!" For women who suffer from it, this makes the sex act nearly impossible to enjoy. One may experience itching in the vulvar area that can be mild or intense. There may also be tears in the skin around the vaginal or anal area, as well as the inner and outer labia. The skin around the affected area may appear whitish and pale or it may look like white blisters. There can even be bleeding ! The most damaging symptom is the scar tissue that can develop which covers the labia or clitoris, thus interrupting, or even ceasing altogether, any pleasurable sensations associated with lovemaking.
A young girl displays examples of LS on other parts of the body.
Treatment
How do you know if you have Lichen Schlerosus? The only sure way to verify if you have the ailment is for your gynecologist to perform a biopsy on the affected area. Once test results are complete, a firm diagnosis can be determined.
OB doctors and dermatologists usually treat the disorder with a steroidal cream or ointment called Clobetasol. Sometimes, if your breakout symptoms are too bad, the cream form of the steroid can cause some irritaion. When this occurs, the ointment version of the medicince may be used.
Another treatment your doctor may prescribe is the hormonal cream Estrace. It's used to aid the skin and tissue surrounding the affected area. It may help with dryness and elasticity. It also aids to renew and replenish the area that may be damaged from excessive scar tissue, helping to restore the area to it's natural state.
Depending on the doctor, they may also prescribe Testosterone Cream. Not only does it increase libido, it has many other benefits and acts as hormone replacement thereapy, much like it's counterpart, Estrace Cream. It's especially effective after your symptoms disappear because it increases your sex drive, therefore helping to establish a normal sex life again.
Your doctor may also recommend an over the counter ointment called Replens. This is a long-lasting vaginal moisturizer that may increase overall vaginal healthiness.
Essential Oils and Natural Remedies
There are many things one can do to self-treat the disorder, however, always follow the advice of your doctor. If your symptoms persist or get worse, contacting you healthcare provider is recommended. The self help treatments I'm discussing were discovered through various web-based support groups. I'll provide a link to these groups at the end of my article.
To assist with vaginal dryness, one may use Emu Oil. Others may use Tea Tree Oil. I've heard of some women using Virgin Olive Oil! The idea is that if it can be consumed into the body, you can use it.
Other self-help treatments include increasing your intake of Vitamin D3. This is correlated to the theory that Lichen Schlerosus may be connected to a deficiency in vitamin D. Another suggestion is Turmeric Extract. It has many health benefits and is linked to the healing of skin disorders. In addition, it can help with boosting the immune system.
These are just a few examples of self-help remedies for Lichen Schlerosus. I'll be providing links to more information and where to order the products.
Read More From Remedygrove
In Conclusion
If you're suffering from any of these symptoms, please contact your OB doctor or Dermatologist and schedule an appointmet to diagnose the afflicion. Though there's no known cure for the disorder, the symptoms can be controlled, maintained, and in some instances, obliterated by following the advice of your doctor and using self help remedies. If you've already been diagnosed with the ailment, I hope that the information and links can help you cope with Lichen Schlerosus. You're not alone.
A Personal Note: I was diagnosed with LS in July, 2009. After the biopsy, my OB doctor gave me Clobetasol Cream. Alone, it didn't work. I ASKED for the Estrace cream and got it, but still was not better and had a really bad flare-up that actually burned so bad I could hardly function. He referred me to a dermatologistwho changed the steroid cream to an ointment. This gave me some relief, but it wasn't until I started doing my own research that I found the remedies I needed to regain a normal life. I got an appointment with the Vulvar Clinic in Little Rock, UAMS. I was already symptom free by the time I saw the specialist there. He told me, "Whatever you've been doing, keep doing it because your tissue and skin is completely healthy." This is what I'm doing for maintenance:
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
I'm adding the links below. Good luck!
Support Group for Lichen Schlerosus
- Best Support Group for LS!
.This group is for anyone who is dealing personally with the disorder called 'Lichen Sclerosis'(LS) as well as 'Lichen Planus'(LP) (very similar) and BXO (a male version) or has a partner, friend, or child dealing with this painful genital condition
Good links for information and support!
- National Lichen Sclerosus Support Group
More support for dealing with LS. - Lichen Sclerosis
Providing education, clinical care, research, and health care information for adolescent girls and young women.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Comments
Annette Thomas (author) from United States on January 04, 2016:
Yahoo LS group is the best one I know of. You might try MD Junction; they have lots of good groups.
Anne on January 03, 2016:
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.
Annette Thomas (author) from United States on February 20, 2015:
Maggie,, glad to hear you are actively searching for what will work for you. You'll find the right thing. It helps to cut down on white starches, too. Good luck!
Annette Thomas (author) from United States on February 20, 2015:
Maggie,, glad to hear you are actively searching for what will work for you. You'll find the right thing. It helps to cut down on white starches, too. Good luck!
Maggie on February 19, 2015:
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!
Annette Thomas (author) from United States on August 07, 2014:
deb, I'm glad you found your way to this article. I found that a round of steroids gave me great relief but it's not something to do very often, as it can interfere with the immune system.
Try googling all natural treatments, too.
deb on August 07, 2014:
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.
Annette Thomas (author) from United States on August 03, 2014:
RT:
To the first question: No.
To the second question, slight.
RT on August 03, 2014:
Donotfear did you have loss of features or fusing? Did you ever see the features return?
Annette Thomas (author) from United States on July 19, 2014:
The Emu oil is just a moisturizer. Some say it soothes the pain. Yet others swear it helps clear it up. Whatever way you go, if it feels better, keep using it. If not, discontinue and go with another. Pure organic coconut oil is really good for most all things, though soothing the itching may not be one of it's functions.
Sudha on June 20, 2014:
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?
Annette Thomas (author) from United States on June 20, 2014:
Sudha: the answer is yes. Just remember that not everyone has success with certain things and others do.
Sudha on June 19, 2014:
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 :(
Annette Thomas (author) from United States on February 10, 2014:
Jason, I certainly can't give advice but I can surely suggest going to some of the links, above, and reading about what other males have encountered. I am not qualified to tell you if something is safe or not. Please discuss with your doctor. I'm sorry your are having difficulties with this disorder.
Jason on February 09, 2014:
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?
Bonds on February 03, 2014:
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.
Annette Thomas (author) from United States on February 02, 2014:
Bonds:
Bless her little heart!! Remember.....there are support sites for this and you can get lots of help from there. It saved my life! https://groups.yahoo.com/neo/groups/LichenSclerosi...
Bonds on February 01, 2014:
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.
Annette Thomas (author) from United States on November 13, 2013:
JD: To answer your question about how long it took to see improvement. I had a super bad flare up....really uncomfortable. I had started the regime I talked about in the article. My immune system was obviously low....I got sick with a bronchial infection on top of it. Wheezing, difficulty breathing, etc.
I had to go to the doctor because of it. They gave me a steroid shot in the office, plus prednisone for a few days with antibiotics. The steroids cleared it up, I assume because relief came within 2 days. The do not recommend steroid treatment for LS since it lowers the immune system, but when having a bad flare up, it seemed to help me. I continued using the ointments I had, T & C plus vit. D and Turmeric extract.
I strongly suggest staying away from dairy products and any kind of artificial sweetener. Only use pure Stevia to sweeten. Almond milk is wonderful, too. Taking probiotics will help also. It's all about building your immune system & if you're doing anything to compromise it, like putting artificial stuff into your body, it will not accept it & react.
I hope you get some relief!
JD on November 12, 2013:
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
Annette Thomas (author) from United States on November 05, 2013:
kyla mom: The only thing I know to do is continue with the oils and testosterone ointment/cream. If you are seeing a "Lichen literate doctor" he should be able to suggest something. It's bound to be uncomfortable for you. Search the LS support group boards..
kylamom on November 04, 2013:
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.
Annette Thomas (author) from United States on July 31, 2013:
Cath: You are so right about this. On the LS support forums, they speak of this very thing. This is very good advice for women who aren't even struggling with the symptoms of LS. It's about prevention, too. Thanks for your input.
Cath on July 31, 2013:
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.
Annette Thomas (author) from United States on June 08, 2013:
slaviya: Oh....yeah! You know, there is definitely a reality to the dead see salt! Full of minerals, for sure.
I haven't had a flare up in a long long time: even when I contracted Lyme disease and my immune system was compromised, I didn't flare up.Yehhhhh!
slaviya from UAS NJ on June 07, 2013:
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.
slaviya from UAS NJ on June 07, 2013:
Help me a lot of bath salt dead sea 20 minutes 2 days a week.
slaviya from UAS NJ on June 07, 2013:
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.)))
Annette Thomas (author) from United States on June 07, 2013:
I just remembered another remedy. I buy cow udder ointment; yes, Vermont's Original Bag Balm! I added a small drop of tea tree oil to a glob and us it to sooth chapped areas and even LS!
Annette Thomas (author) from United States on June 07, 2013:
Slaviya: Which recipe was it? I'm glad it worked!
slaviya from UAS NJ on June 07, 2013:
WOW donotfear - thank You, thank You very much!! I used your recipe, whiteness, pain and itching disappeared .
Annette Thomas (author) from United States on June 06, 2013:
HI LS help:
I got my main support for LS from the Lichen Sclerosus yahoo group. A link is posted above, at the end of the article. I got my information from them. They helped me more than anyone and knew a lot more than my doctor....he turned up his nose at my suggestion on the Emu oil, laughed about using the Testosterone cream, but gave it to me anyway. You will get tons of info there...join them1
LSHELP on June 06, 2013:
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!
Annette Thomas (author) from United States on March 06, 2013:
Jaycie6,
Thank you for your contribution. I'd never heard of the wheat germ oil but I'm glad the information is here. What works for one person, may not work for another. Glad you found the right mix~~!
Jaycie6 on March 05, 2013:
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!
Annette Thomas (author) from United States on December 11, 2012:
Erika:
You are absolutely right on everything here. It's connected to the immune system and stress! If it's feeling uncomfortable between the anus & vagina, it's probably the LS. If you have a good RX program that covers it, Estrace cream will help renew the tissues there. I found that a small drop of Tea Tree oil mixed with Bag Balm (cow udder cream) makes it feel so much better! It's cooling. A lot of women start with 2000 mg of Vitamin D.
I don't know what the heck a "sexual health specialist" is. You definitely need more help. Please go to the link above for the LS Support group. I guarantee you'll find the help you need there. Try these natural remedies, too. They really work!
Erika on December 11, 2012:
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.
Annette Thomas (author) from United States on December 07, 2012:
tears: Yes, absolutely inform your physician. He could perform a biopsy of the area to tell 100% if it's indeed LS. Tearing of the vaginal skin is not normal. Be sure to research further and don't be afraid to use these natural remedies mentioned here. Good luck!
tears on December 06, 2012:
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.
Annette Thomas (author) from United States on November 20, 2012:
torn:
You're so right about the coconut oil! I'm sorry you've had to go through this. It must be twice as uncomfortable being pregnant. I'm glad your doctor is on top of this. Bless you and good luck with the birth of your baby!
torn on November 19, 2012:
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....
Annette Thomas (author) from United States on October 16, 2012:
I'm sorry, Rhonda. If you go to the link here for the online support group, I know you'll find some great suggestions. I've found that Tea Tree oil soothes nicely, but you have to be careful with it, as it can burn.
Rhonda needs Timber! on October 16, 2012:
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 !!!
Annette Thomas (author) from United States on September 27, 2012:
Hi Jan,
The Turmeric is an anti-inflammatory. Turmeric's curcumin reduces inflammation naturally, without damaging the liver or kidneys. I don't know how or why, but it has been used for centuries. The aloe would certainly sooth the pain, but as far as healing from the inside, I don't know. I'll bet the aloe helps with thinning or cracking, but am not sure. I just know that the turmeric works from the inside out, & if you hit it at the root, it will produce positive results. And of course, the vitamin D is important.
Jan on September 27, 2012:
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!
Annette Thomas (author) from United States on August 20, 2012:
Jayme: Make sure you are taking lots of vitamin D and turmeric extract. Only other thing you could do if it is unbearable is go on steroids (last resort) which really helped mine a lot during an unbearable flare up.
Jayme on August 18, 2012:
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?
Julie on June 09, 2012:
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!
Annette Thomas (author) from United States on May 30, 2012:
kathy: The vitamin D deficiency is a key to the source of this bothersome ailment. Absolutely. Have you tried a little benadryl for the itching? If it gets too bad, a round of steroids will help trememdously, just to give you some relief. I'm sorry you are suffering with this. Hang in there!
kathy on May 30, 2012:
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
Witheld on May 17, 2012:
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.
barbara on April 12, 2012:
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
Annette Thomas (author) from United States on April 05, 2012:
chat pearl:
You may very well be right about tomatoes causing it. You may have an allergy. But I'd stick with the confirmed diagnosis. That cream is not always good. Why not change to the ointment instead? Also, for the anal area, a steroidal spray may feel good. I kid you not, I used my steroidal inhaler and sprayed on the area. Not medical advice, it's just what I did! Ha!
What about a round of prednisone? That really helped the flare up with mine. Take your Vitamin D: I suggest 5000 mgs a day. Coconut oil is good, emu oil and best of all is epsom salt soak. Yes, it helped.
I'm sorry you are in such pain! I do understand. Don't give up.
Chat pearl on April 05, 2012:
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-
Annette Thomas (author) from United States on March 29, 2012:
jinxed4times:
You can find organic coconut oil at your local heath food store. Also the Turmeric extract. I take twice what the recommended dose is. It was really weird, after I was taking the turmeric a while, these little hard dark bumps on my legs disappeared.
I don't know of anyone who experienced bruising. Great that you got an internist specializing in Lichen! At least you know she will know the latest news. Great!!1
jinxed4times on March 29, 2012:
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.
Annette Thomas (author) from United States on March 28, 2012:
jinxed4times:
Wow, great that you got proactive!! I can't believe your other doctor told you to just "deal with it". That is the epitome of tasteless and unprofessional. Are you taking the Turmeric extract? It will really help you. I'm on 5000 iu of Vitamin D daily. Oh, I forgot to mention the organic coconut oil! Soothing and good for the skin area.
I'm so glad you shared this. Good luck!!
jinxed4times on March 28, 2012:
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.
Annette Thomas (author) from United States on March 07, 2012:
guest EA: Hey, thanks for the tip! Maybe others will follow suit. Fortunately, mine has been under control for a while, but this sounds like a good solution. Will definitely try this and urge others who are suffering to try this.
guest on March 06, 2012:
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
Annette Thomas (author) from United States on April 14, 2011:
Sapphire: I'm sorry you've been hurting so bad. I'm not surprised that your doc would say something like that, 'it's easily treated': I say Bah! Hum-bug! They just can't see through the narrowness of their so-called "aproved guidelines of treatment". Ridiculous! Go with what others are saying, who have actually had success, instead of relying on western medicine and their "approved guidelines". I may mention, though,that a certified dermatologist is more knowledgeable about the condition. Don't forget to try taking Turmeric extract, too! And let's not forget good ole' Aloe Vera plant. Bless you!
Sapphire on April 14, 2011:
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.
Annette Thomas (author) from United States on February 19, 2011:
The true cause of LS is unknown. I can tell you, though, that there is a definite connection between these things:
Low vitamin D. When I added D to my supplements, along with Turmeric extract, I got better. Turmeric has some detoxifying properties. Also, I strongly believe that eating too much Soy products aid this in progression. During the time I had it, I was consuming a LOT of Soy products. I cut back on Soy at the same time I started taking the Turmeric and Vitamin D. Another culprit could be using a lot of artificial sweeteners like Aspartame, or any artificial sweetener! They are nothing but poison. Try Stevia instead. It's all natural.
Hope the info helps. Glad to know the tea tree oil did the trick!~
anonamous on February 18, 2011:
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?
thomas sabo onlineshop on August 25, 2010:
thanks
Annette Thomas (author) from United States on May 19, 2010:
Art4LIfe: Thanks!
Art 4 Life from in the middle of nowhere.... on April 30, 2010:
Very informative hub~
The information about the natural oils and remedies are very good!
Annette Thomas (author) from United States on April 28, 2010:
Butterfly Lady: I hope that the information will help your friend. Please urge her to go to the support group link I supplied. That is where I found the most help, and support! (Not from my doctor)
Butterfly Lady from Broken Arrow, OK on April 28, 2010:
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.
Veronica Allen from Georgia on April 25, 2010:
Thank you donotfear - I got your email and I really appreciate the information.
Annette Thomas (author) from United States on April 25, 2010:
Hello hello: Thank you for commenting. This disorder is not well known and aften misdiagnosed. I'm glad I could share the information.
Veronica: Your little one has eczema? Try switching to the steroidal ointment instead of the cream. There's a preservative in the ointment that causes reaction sensitivity in some people. You can imagine how sensitive a baby's skin would be! The ointment is more like a gel, or vaseline and is more soothing. I'm glad to have shared this bit of unknown, yet sensitive information with you!
Veronica Allen from Georgia on April 24, 2010:
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.
Hello, hello, from London, UK on April 24, 2010:
Very informative about something I have never heard of. Thank you.
