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Lichen Sclerosus Support and Awareness Group
Lichen Sclerosis (LS), Lichen Sclerosus et Atrophicus (LSA),
Balanitis Xerotica Obliterans (BXO). Csillag's disease, or White Spot Disease.
These are all different names for the same disease. Typicaly it's called LSA
or BXO when it affects men, LS when it affects women or in refering to the disease
in general.
It is a painful skin condition that usually affects the genital
area or anus (but can appear anywhere on the body). It is of unknown etiology.
It is not contagious. While more prevalent in women than men (perhaps due in
part because men are more reluctant to seek treatment) it strikes across all
age groups.
Symptoms of Lichen Sclerosis include thinning skin, white patches
of skin, itching and/or burning, painful sexual intercourse, and sores or lesions
resulting from scratching. If left untreated, LS can result in fusing of the
skin and atrophy. It can strike in varying intensity. Photo's of LS can be found
at www.dermatlas.org
This disease is often misdiagnosed as a bacteria infection,
yeast infection, herpes, and in children, even as signs of sexual abuse. It
can be positively identified by a skin biopsy.
Our Purpose
We strive to provide or correlate information from many different sources
about LS, promote awareness of this disease and hopefully promote an interest
in research to find an effective treatment and cure. We provide an online forum
for sufferers to exchange information and provide mutual support. You don't
need to suffer from LS alone or in silence!
The material contained within this website is for informational purposes
only. You should educate yourself on LS so you can discuss your condition intelligently
with your Physician. Please don't use this information to self diagnose, medicate
or treat yourself!
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| pennyrose |
 0 writes "paladin cream. I've noticed that some ladies are having problems getting this cream especially in the ukl. My son ordered mine over the internet and it arrived in just over a week. Email address for ordering is:-
www.rashcream.com
Hope this helps - paladin certainly improves the comfort zone!!! Can't claim that it has healed the problem but I've only been using it for a week.
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Posted by Admin on Saturday, September 27 @ 20:58:40 EDT (533 reads)
(Read More... | Score: 2)
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| Beta Mannan worked for me |
 0 writes "I was diagnosed with HPV virus a year ago and also had Lichen Sclerosis that developed about the same time. I started taking Beta Mannan supplements for the HPV and to my amaze my LS disappear completely within the first month of treatment.
I know it is doing the same thing for the HPV, I'm so excited I wanted to share it to anyone that may need it.
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Posted by Admin on Friday, June 13 @ 21:35:32 EDT (1442 reads)
(Read More... | Score: 3)
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| Theory about CAUSE and a herbal remedy with amazing results |
diana writes "First, I've had an epiphany regarding the CAUSE of LS! I've found that, for me, it is activated by the ODORS and presence of PETROLEUM products: Gasoline, new carpets, new furniture, synthetic fabrics, new vinyl, new tires, new glossy magazines, any plastic product that outgasses into the air.
And then I discovered that all the topical remedies I was using contain PARABENS (methyl, sodium, polyparaben, all petroleum derivatives), even some of the homeopathic gels - and though they might help for a few days, my symptoms would always return. Once I realized what was triggering the pain and itch, I cleaned up my home environment and avoided big stores with random chemicals floating around. That helped ALOT.
Then I discovered USNEA, a lichen with antibiotic and antifungal properties which, as far as I can determine, has not so far been used to treat LS. Within two oral doses of USNEA tincture I felt all symptoms subside. It's been about three weeks so far and still maintaining a level of 2-3 doses/day of the tincture. I've not had need of usnea salve, but it is available on the web. Just make sure it has no parabens in its base. Two good sources of the tincture are GAIA Herbs and Avena Botanicals.
Seems like every LS sufferer should learn about endocrine disruptors - remnants of plastics, hormones, various other chemicals that remain in the waste stream (water) and air. There's some info on the web but not enough to really wake people up.
Making sure to eat only ORGANIC eggs and dairy products eliminates the chance of secondary hormones in these foods, which are very common in commercial products. Daily SUNSHINE on affected area (even through a window) really helps, too.
I would really like to get feedback from others who experience reactions to petroleum or plastic odors.
Ditto regarding the use of Usnea. After almost eighteen years, it is like a miracle to me. Please let me know what you find.
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Posted by Admin on Friday, April 11 @ 08:00:02 EDT (1517 reads)
(Read More... | Score: 4.6)
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| I want to share this information:- |
0 writes "After suffering undiagnosed for many years, I have now been 4 months in severe pain and I was finding that the creams were not working on me.
I came to desperation point yesterday and after sitting in a cool bath thought I would try my aloe vera plant, as I thought nothing else is working at the moment. I was so amazed. Immediately I applied the plant, it was cool, the itching stopped and the pain went and it lasted for 4 hours. This was the first time in 4 months I have had relief.
It isnt a cure, but, if all fails and the pain gets too bad, please try the actual plant. I have since bought the cream but it isnt as effective as the plant itself. Peel of the skin and apply the cool green gel to your skin. I hope it works for you as it did me.
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Posted by admin on Tuesday, March 18 @ 20:24:17 EDT (1173 reads)
(Read More... | Score: 5)
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| Lyrica for LS |
0 writes "I was diagnosed in 2001 with LS. First my doctor diagnosed me with Herpes. The treatment for that made the LS worse. Finally, a gy/ob diagnosed LS. I started cortesone creams but didn't get any relief. It became so severe that I couldn't work anymore. I was only able to pee if I filled up the bathtub with warm water so it would dilute the unrine immediately. I was absolutely going crazy with the pain, itching and burning. It so drastically affected my life that I became depressed and suicidal. I couldn't leave my house for long in case I needed a bathroom. The pain was unbearable. The only way I could sit was on the couch on one hip with my legs spread.
My gynecologist didn't seem to have any answers other than keeping dry and using the creams and premarin. No relief from anything. I seemed to be in my family doctor's office all the time looking for some help. My family doctor is nearing retirement and he has someone taking over for him on Fridays. I went to see her and she really took the time to check any solution. She put a lot of thought into it and really thought outside the box when she prescribed Lyrica for me. She said that Lyrica works on nerve endings to stop pain. I was willing to try anything. This is the first time that I have ever had any relief. It took a couple of weeks to fully kick in but I am almost pain free now for a few weeks. No itching meant that the sores could heal and that meant I could pee like a normal person. I can sit for extended lengths of time now. And the shooting, stabbing pains that used to come at night time have completely stopped. I can almost get a full night sleep now. Walking has become much easier now as the shooting pains that came from walking have also stopped. I feel like an entirely new person. The very slight, mild irritation I got this week from having my period and using pads was absolutely nothing compared to before and it cleared within a day of my period being finished.
I feel like the Lyrica has given me my life back."
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Posted by admin on Tuesday, March 18 @ 20:23:41 EDT (1193 reads)
(Read More... | Score: 4)
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| Website maintenance |
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The webhost is undergoing some maintenance this weekend so we will be up and down, but all should be back to normal Monday.
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Posted by Admin on Friday, February 08 @ 22:38:54 EST (1065 reads)
(Read More... | Score: 0)
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| I am a mother of a 5 year old daughter who has LS. I would be grateful for all |
 cali writes "My little girl is 5 years old and was recently diagnosed with mild Crohns Disease as well as LS. We have not had a biopsy as our pediatrician was certain that it was infact LS. These past few days it seems to be inflamed and has a distict white ring all around her entire genitailia including the back area of anus. She is uncomfortable, has painful bowl and urination and is wanting to itch. Our doctor said to use plain vasoline to aid in comfort.
Any suggestions or inspiration would be welcome.
Thank you,
Mother Love"
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Posted by Admin on Thursday, December 20 @ 13:41:14 EST (1301 reads)
(Read More... | Score: 3)
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| Vulval Self Examination Leaflet link |
 mountaingal writes "I found this link to a self examination leaflet put out for us to know more about what we're looking at and how important self examination is.
Please take a look and learn more about our bodies and situation.
I recently saw a post remarking that the nurses and doctors were making fun of a woman on the forum for not knowing the name of the parts of her lower anatomy. Shame on them, but let's make sure we can point out which part hurts in no uncertain terms!
http://www.lichensclerosus.org/vhacselfexamination.pdf"
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Posted by Admin on Monday, November 26 @ 07:03:15 EST (1523 reads)
(Read More... | Score: 5)
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| Multicentre, phase II trial for the safety and efficacy of top.Tacrolimus for LS |
tony writes "The results of the trial are now published in the British
Journal of Dermatology. Here you will find the abstract:
Multicentre, phase II trial on the safety and efficacy of topical tacrolimus ointment for the treatment of lichen sclerosus.
* Hengge UR,
* Krause W,
* Hofmann H,
* Stadler R,
* Gross G,
* Meurer M,
* Brinkmeier T,
* Frosch P,
* Moll I,
* Fritsch P,
* Muller K,
* Meykadeh N,
* Marini A,
* Ruzicka T,
* Gollnick H.
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Posted by admin on Monday, October 22 @ 21:08:46 EDT (1556 reads)
(Read More... | 2599 bytes more | Score: 3.33)
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| 40 years with LS |
Bluebell writes "I am 60 years old and have only in the last 2 years understood exactly what I was suffering from. It started when I was first married. I remember describing the pain of intercourse to a doctor as "like being stabbed with little daggers". At first I was treated by 2 gynaecologists (for thrush) unsuccessfully of course. Then they sent me to a psychiatrist, who brought my husband into the sessions. I was especially hurt by this man, because he got my husband believing that I was indeed in need of psychiatric treatment, a belief that remained in the back of both our minds for years. At any rate, the psychiatric "treatment" didn't work. I went back to my own GP, and he treated me for thrush ineffectively from then on.
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Posted by admin on Monday, October 22 @ 21:07:20 EDT (2553 reads)
(Read More... | 4493 bytes more | Score: 4.89)
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