What is Lichen Sclerosus (Sclerosis)? The Answers You Want
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Here you will find the answers to what lichen sclerosis is, who gets it, who treats it, and alternative treatments.
What Is Lichen Sclerosus?
Lichen sclerosus (LIKE-in skler-O-sus) is a chronic inflammatory skin disorder that can affect men, women, or children, but is most common in women. It usually affects the vulva (the outer genitalia or sex organ) and the anal area. While lichen sclerosus appears predominantly in postmenopausal women, this skin condition is also known to develop on the head of the penis in men. Occasionally, lichen sclerosus is seen on other parts of the body, especially the upper body, breasts, and upper arms.
The symptoms are the same in children and adults. Early in the disease, small, subtle white spots appear. These areas are usually slightly shiny and smooth. As time goes on, the spots develop into bigger patches, and the skin surface becomes thinned and crinkled. As a result, the skin tears easily, and bright red or purple discoloration from bleeding inside the skin is common. More severe cases of lichen sclerosus produce scarring that may cause the inner lips of the vulva to shrink and disappear, the clitoris to become covered with scar tissue, and the opening of the vagina to narrow.
Lichen sclerosus of the penis occurs almost exclusively in uncircumcised men (those who have not had the foreskin removed). Affected foreskin can scar, tighten, and shrink over the head of the penis. Skin on other areas of the body affected by lichen sclerosus usually does not develop scarring.
How Common Is It?
Although definitive data are not available, lichen sclerosus is considered a rare disorder that can develop in people of all ages. It usually appears in postmenopausal women and primarily affects the vulva. It is uncommon for women who have vulvar lichen sclerosus to have the disease on other skin surfaces. The disease is much less common in childhood. In boys, it is a major cause of tightening of the foreskin, which requires circumcision. Otherwise, it is very uncommon in men.
What Are the Symptoms?
Symptoms vary depending on the area affected. Patients experience different degrees of discomfort. When lichen sclerosus occurs on parts of the body other than the genital area, most often there are no symptoms, other than itching. If the disease is severe, bleeding, tearing, and blistering caused by rubbing or bumping the skin can cause pain.
Very mild lichen sclerosus of the genital area often causes no symptoms at all. If the disease worsens, itching is the most common symptom. Rarely, lichen sclerosus of the vulva may cause extreme itching that interferes with sleep and daily activities. Rubbing or scratching to relieve the itching can create painful sores and bruising, so that many women must avoid sexual intercourse, tight clothing, tampons, riding bicycles, and other common activities that involve pressure or friction. Urination can be accompanied by burning or pain, and bleeding can occur, especially during intercourse. When lichen sclerosus develops around the anus, the discomfort can lead to constipation that is difficult to relieve. This is particularly common in children. It is important to note that the signs of lichen sclerosus in children may sometimes be confused with those of sexual abuse.
Most men with genital lichen sclerosus have not been circumcised. They sometimes experience difficulty pulling back the foreskin and have decreased sensation at the tip of the penis. Occasionally, erections are painful, and the urethra (the tube through which urine flows) can become narrow or obstructed.
What Causes Lichen Sclerosus?
The cause is unknown, although an overactive immune system may play a role. Some people may have a genetic tendency toward the disease, and studies suggest that abnormal hormone levels may also play a role. Lichen sclerosus has also been shown to appear at sites of previous injury or trauma where the skin has already experienced scarring or damage.
Is It Contagious?
No, lichen sclerosus is not contagious.
How Is It Diagnosed?
Doctors can diagnose an advanced case by looking at the skin. However, early or mild disease often requires a biopsy (removal and examination of a small sample of affected skin). Because other diseases of the genitalia can look like lichen sclerosus, a biopsy is advised whenever the appearance of the skin is not typical of lichen sclerosus.
How is it Treated?
Lichen Sclerosus (Sclerosis) is most often treated by the application of ultra-potent corticosteroids. This treatment works for some, in some cases, but often fails to help.
In addition as there is no "cure", a lifetime usage of these drugs is often a patient's "only choice".
I strongly believe in the use of alternative therapies, rather than the use of damaging drugs.
The latest non-FDA approved treatment is PHOTODYNAMIC THERAPY.
What is Photodynamic Therapy?
Photodynamic Therapy (PDT) is a treatment that combines light or laser with a photosensitizing solution called Levulan to improve some skin conditions including sun damage, pre-cancerous cells (actinic keratosis), acne, rosacea, and hidradenitis suppurativa in a non-invasive, cosmetically enhancing way.
The photosensitizing solution is called Levulan, 20% aminolevulinic acid, manufactured by DUSA Pharmaceuticals. This is applied to the surface of the skin to be treated, where it is absorbed preferentially by abnormal or pre-cancerous skin cells as well as oil glands and pores, making these more sensitive to laser or light. After the incubation period (the time the solution sits on the surface of the skin), a laser or light source will be used to activate the solution. This combination therapy leads to a destruction or reduction of abnormal cells and excessive oil gland cells and results in healthier, smoother, and clearer skin.
Although there haven't been many studies on photodynamic therapy for genital lichen sclerosus, there have been a few and there seems to be a significant success rate.
The advantages of photodynamic therapy are:
- It's non-systemic
- Usually only 3-5 treatments are needed, spaced one month apart
- There is little to no pain involved with the treatments
- There have been "cures" in some cases, where the lichen never returns.
The disadvantages of photodynamic therapy are:
- Photodynamic therapy is not FDA-approved for lichen sclerosus
- Treatments are expensive, with an average of $1,000 per treatment
- Most insurance doesn't cover photodynamic therapy for this condition (although it never hurts to try)
Who performs photodynamic therapy?
Usually a dermatologist who is well-versed in laser therapy performs photodynamic therapy.
Lichen Sclerosus (Sclerosis) Photodynamic Therapy (PDT) Links
Educate Yourself About Photodynamic Therapy
- Photodynamic Therapy of Vulvar Lichen Sclerosus With 5-Aminolevulinic Acid
- Objective: To evaluate the therapeutic effect of photodynamic therapy on vulvar lichen sclerosus.
Methods: Twelve women with lichen sclerosus were enrolled in a prospective, single-arm pilot study. Four to 5 hours before photodynamic therapy, 10 mL of a 20% solution of 5-aminolevulinic acid was applied topically to the vulva. Photodynamic therapy was administered with an irradiation of 80 J/cm2 at an irradiance of 40-70 mW/cm2. Light with a wavelength of 635 nm was delivered by an argon ion-pumped dye laser. The degree of pruritus was evaluated using a horizontal visual analog scale before and after 6-8 weeks, and patients were followed tri-monthly after photodynamic therapy. - Laser-mediated photodynamic therapy of lichen sclerosus
- Case Report
Patient: J. F., 67-year-old woman
Duration: Three years
Distribution: Shoulders, axillae, and abdomen
History
The patient presented with a 3-year history of mildly itchy lesions developing on her abdomen, shoulders, and underarms. An outside dermatologist told her that she had psoriasis, and she was treated with a mild cortisone cream without improvement. When she presented to the author's private practice, a skin biopsy was performed, which demonstrated lichen sclerosus.
Lichen Sclerosis eBook
The eBook is only $5.25, so a small investment to make to have all of the info in one place.
Also, you can add yourself to the mailing list to receive eBook updates and also any breaking news articles on Lichen Sclerosis.
www.lichensclerosisinfo.com
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Other Good Books about Lichen Sclerosis
The Official Patient's Sourcebook on Lichen Sclerosus: A Revised and Updated Directory for the Internet Age
Amazon Price: $28.95 (as of 12/02/2008) 
Laser-mediated photodynamic therapy of lichen sclerosus.(CASE REPORTS): An article from: Journal of Drugs in Dermatology
Amazon Price: $5.95 (as of 12/02/2008)
Know the symptoms of lichen sclerosus in girls.(Dermatologic Therapy): An article from: Skin & Allergy News
Amazon Price: $5.95 (as of 12/02/2008)
Lowdown on lichen sclerosus may be a surprise: treatment strategy has changed.(Clinical Rounds): An article from: Skin & Allergy News
Amazon Price: $5.95 (as of 12/02/2008)
Lichen Sclerosus (Sclerosis) Links
Important Links
- National Lichen Sclerosus Support Group
- The Lichen Sclerosus Support Group is based in the UK, but does have an international membership. Their website also contains a lot of useful information on Lichen Sclerosis, its symptoms and its treatment.
- Questions and Answers About Lichen Sclerosus
- From NIH, NIAMS
Relax!
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Lichen Sclerosus and You Poll
Poll about Lichen Sclerosis and You
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Comments are appreciated!
monarch13 wrote...
Thanks again for joining The Healthy, Wealthy and Wise Group. 5 stars!
Posted September 02, 2008
RacingGirl wrote...
Hi,
I love your lens. Given you 5 stars.
Don't forget to drop by my "Acne Treatment by Remedies of Nature" Lens.
Posted May 29, 2008
Adowling wrote
I was diagnosed with LS about 12months ago after about 9 yrs of suffering. I was misdiagnosed so many times that i was about ready to give up. Told that i probably had herpes until finally a blood test was done that proved that i had never been exposed to herpes. I felt so embarrassed having to see so many doctors but it does feel good to finally have and answer. I have had some success with the ointments. I am only 25 and i am devastated because my daughter who is 2 has just been diagnosed with it as well. at least she wont have as much trouble as i have.
Posted May 01, 2008
Paula wrote
I am 32 had my biopsy done and found out 6 months ago I have LS. Clobetasol is a joke it makes it worse and the Dr's here just say keep using it there really is nothing else to use. I bought a UVB light and use it for 30 minutes a day it helps alot. I also swithched to using natural oatmeal soap showers only which keep itching at bay. I still have days that I can itch till I bleed put its not as bad as when I use the Rx! As for sex with my husband I have been stretching the outter lips and using a pump also ( sounds weird but it works!) color returns for short time periods and No pain during intercourse. Hope this helps Im not willing to give up my life for LS. paula_1474@hotmail.com
Posted April 26, 2008
WorldVisionary wrote...
Yes Kerry, laser photodynamic therapy does work for that area.
Posted March 30, 2008
Remember...
"Health is not simply the absence of sickness".
-- Hannah Green
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