Lichen Schlerosus: Symptoms, Treatment, Self Help
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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.
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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.
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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.
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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.
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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 maintenence:
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 similiar) 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.
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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: 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!
Thank you donotfear - I got your email and I really appreciate the information.
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.
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)
Very informative hub~
The information about the natural oils and remedies are very good!
Art4LIfe: Thanks!
thanks
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?
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!~
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.
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!
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
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.
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.
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!!
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.
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
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-
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.
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
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.
Hello, hello, 2 years ago
Very informative about something I have never heard of. Thank you.