under the names "Kraurosis", "Weissfleckenkrankheit" (White Spot Disease), or “Lichen Sclerosus et Atrophicus” (LSA), terms which are now considered outdated.

LS probably affects up to 4% of women of all ages, and less frequently men (statistics are unclear, due to the circumcision of many boys at an early age) and children (1 in 900). The number of unreported cases is very high, due to the taboo surrounding it. Furthermore, many people are not diagnosed correctly for a long time.

LS does not fit the official statistics' category of a "rare disease"; it is far too common.

Since 2013, our Association has aimed to make LS a topic in the media and at medical congresses. We prompted different articles and TV information, see above.

What exactly is lichen sclerosus?

LS is a chronic inflammatory skin disease of the outer genital area. It is not contagious, has nothing to do with poor hygiene, and is NOT a venereal disease. In about 15% of cases, LS also occurs away from the genital area, i.e. on normal skin, e.g. in the underbust crease.

In the majority of patients, the disease typically occurs in relapses over many years; long periods without symptoms can also occur. The body's own immunocompetent cells destroy the elastic connective tissue of the subcutis of the external genitals. Vascular inflammation often accompanies this process, irritating the skin and making it very sensitive; open wounds and scabs appear. In affected women, as the disease progresses, the labia minora recede, the skin buries the clitoris, the entrance to the vagina becomes narrower and, at an advanced stage, the typical structures of the female genitals can no longer be recognized. In men, in addition to vascular inflammation, progressive narrowing of the foreskin is typical.

In both sexes, LS can also affect the perineum, the anal region, and the gluteal fold.

LS can occur with other concomitant diseases, particularly thyroid and diabetes mellitus diseases and other autoimmune diseases. LS-related changes to the oral and vaginal mucosae have been described, but are not typical.

 

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The following symptoms may be signs of LS:

•     itching and burning in the genital area (usually occurring in relapses),
•     whitish scarring and patches,
•     pain during sexual intercourse and soreness afterwards,
•     thin, shiny, dry mucous membrane, and cracks/fissures of the skin,
•     frequent fungal infections due to a locally-disturbed immune system,
•     recurrent bladder problems (pain similar to an inflammation of the bladder, but usually with no bacteria found)

However, some affected people do not have any itching and do not experience any degeneration. In the early stages, visual skin changes are barely noticeable, which is why LS is often confused with infections, especially fungal infections. In women, LS usually occurs in the vulval area, and, in men, on the foreskin, but it can also occur on the anus and in the buttock cleft. (See the gender-specific information under "Who can be affected" and "LS localisations", using translating machines until we have translated this information).

Women are advised to use a hand mirror for self-examination. If there are isolated white deposits and/or cracks in the skin, especially at the rear of the vaginal entrance, or if the labia minora begin to "stick" to the large labia minora, this is suspicious. Complaints of painful sexual intercourse are also typical; women indicate that penetration is painful, but the vagina itself usually is not. Some women have no discomfort during sexual intercourse, but have pain afterwards that lasts for a few days.

Close observation of the skin is very important.

Self-examination flyer for women PDF

How does a doctor recognize lichen sclerosus?

 

Doctors often have great difficulty recognising LS at an early stage; unfortunately, the diagnosis is often only made years after the first symptoms appear, when the disease has progressed and the skin changes caused by it are obvious. It is important for patients to describe all symptoms in detail, and to ask their doctor about the possibility of an LS diagnosis. Under the "Information for doctors" tab, doctors will find a score.

Due to a locally-disturbed immune system, LS can favour infections, such as genital warts or fungal infections, and these infections can mask the underlying disease. With a detailed description of all symptoms and a thorough examination by an experienced physician, LS should be considered as a possible diagsnosis, because other infections seldom create the complex picture of fissures, deposits, redness and soreness.

Lichen sclerosus score PDF

 

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How and where can I find a doctor who is familiar with LS?

 

If you are looking for a competent doctor for a diagnosis, a second opinion or treatment support, please look under the "What we offer" and "List of doctors" tabs. We receive enquiries on this subject every day from non-members and, for various reasons, we do not publish lists of doctors publicly.

When is a biopsy necessary/appropriate?

 

Experts have differing opinions as to whether a biopsy is necessary to confirm the diagnosis. We provide detailed information on biopsies under "Information for doctors". A biopsy should ONLY be performed by a specialist, because there are important aspects to consider . Children should NOT be biopsied

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What treatment options are there?

 

European treatment guidelines for LS therapy

 

The European Treatment Guidelines, published in 2015, apply; they propose the use of ointments.

The complete English wording (80 pages) of the Guidelines is available under the "Information for doctors" tab. You will also find an abridged German version and a medical score. Talk to your doctor about these documents; print them out if necessary and take them with you to your next consultation.

LS is treated with highly-potent cortisone ointments or calcineurin antagonists.

Here you can see our suggested treatment plan, in accordance with expert advice.

Lichen Sclerosus Treatment plan: PDF treatment plan

Beware: There are numerous different cortisone ointments on the market. Only very few are suitable for LS treatment. The following (which contain the active ingredient clobetasol propionate) are the most frequently used: Dermovate® (Switzerland), Dermoxin®/Clobegalen® (Germany), and Dermasol® (France). They are class IV cortisone products. Class III cortisone ointments (containing the active substance mometasone), which are also suitable for LS treatment but are somewhat less potent, include: Elocom®, Momegalen®, and Ovixan®.

It is very important that these highly-potent category III or IV cortisone ointments are combined with daily skin-care with fatty products (ointments, oils, creams).

For more information on cortisone, see the document called "Fakten rund ums Kortison" under the "Information for doctors" tab (use translating software for the moment until we have translated the document).

The symptoms disappear very quickly in some patients, while in others it takes a little longer. Patience is needed. Experience shows that those who do not use cortisone according to the Guidelines and do not undergo maintenance therapy risk setbacks and possibly further relapses. Cortisone ointment treatment should always be used in combination with moisturising ointments and care products. Furthermore, care should be taken to ensure correct and gentle intimate care, and non-abrasive clothes/underwear should be worn (see more information and tips in the members' area). Low-dose cortisone ointments or active ingredients that do not comply with the Guidelines may alleviate the symptoms in the short term, but do not fight the actual inflammation; therefore, the risk of progression of the disease remains high.

Testosterone was previously used to treat LS patients, and it brought relief to some female patients. However, it is no longer recommended, due to side effects such as unwanted hair growth, enlargement of the clitoris, and voice changes.

Those who are cortisone-intolerant can use calcineurin antagonists; product names are Protopic® and Elidel® (see below)

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Fear of cortisone? How, where and how much to use at a time?

 

Not infrequently, sufferers express concern and fear regarding the use of cortisone, and many doctors and pharmacists, who have no or insufficient knowledge of LS, may even warn against the use of cortisone in the intimate area. Often there is a warning against "cortisone thinning the skin out".

LS causes much more damage to the skin than cortisone, which is metabolized very rapidly in the mucous membrane. With correct application of the cortisone and adherence to the maximum dose as well as daily fat-based care of the skin, there is no risk of overdose, and side effects are rarely observed.

For further clarification, we have compiled some facts about cortisone and its effects in the treatment of LS patients; see the document "Fakten rund ums Kortison" under the "Information for doctors" tab. This also provides information on where exactly and how much ointment should be used each time.

 

What to do in case of cortisone intolerance?

 

If you are cortisone-intolerant, the active ingredients of the calcineurin antagonist group, which are also effective, are available as alternatives. These include Pimecrolimus (Elidel®) and Tacrolimus (Protopic®). Cortisone is usually the first choice. A combination of cortisone and the alternatives may be recommended by an expert.

 See PDF Tacrolimus ointment in special treatment

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Possible concomitant therapies/measures / Alternative methods

 

Laser treatment

 

Treatment with conventional ablative laser is not recommended (risk of Köbner phenomenon); it usually triggers a relapse, and the skin scars even more. However, new-generation laser devices are now on the market (p.e. Mona Lisa Touch, FemTouch, Erbium Yak). Studies are underway to determine whether they are suitable for the treatment of LS patients. However, even the new modern type laser will not cure the disease. It could be a supplementary therapy for patients whose skin does not heal at all and/or who no longer absorb cortisone due to advanced skin damage. We will keep you informed about new advances and empirical studies, in our association newsletters and member forums. Laser treatments with new lasers should ONLY be carried out by LS experts. Please contact us if in doubt. 

Modern laser therapy does not suit all LS patients, and should only be undertaken by an expert. These laser devices were developed for vulvovaginal atrophy in/after the menopause, for which there are results and studies. However, they are not automatically suitable for LS patients. So far, there is only one well-commented observational study by an Australian professor from Sydney, who described the use in five LS patients. It appears that various clinics and doctors are now procuring such modern lasers, and offering costly treatments. We cannot judge whether they have enough knowledge and experience to treat LS patients.

Since 2016, we have been following the treatments with laser therapy at a clinic in Hamburg, and offered an information workshop on this topic in autumn 2017. Such laser applications in LS patients need to be very well documented, and further tests are required. Recent results were presented in May 2018 at the annual conference of the Association in Freiburg and during a specific Laser-workshop taking place in Basel in August 2019. Documents and more information can be found in the members' area.

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Stretching

 

In women with atrophy (narrowing of the vaginal entrance), improvement in the elasticity of the skin can be achieved with ointment therapy and regular stretching of the vaginal opening with dilators. Several members of our Association confirm that, thanks to this method, sexual intercourse without tearing became possible again.

In men, too, careful stretching of the foreskin is a possible approach, depending on the anatomical condition and stage of the disease.

Our Association offers specific workshops on the subject of "stretching", and provides detailed information and field reports on this subject in the members' area.

(Manual) Physiotherapy

 

Many sufferers with LS have severe tension in the pelvic floor or even develop vulvodynia (see www.vulvodynie.ch) due to years of pain. Exercises to loosen and relax the pelvic floor can help to reduce pain (also in sexual intercourse). Our Association periodically offers workshops, and presents relaxation exercises in the password-protected area.

We highly recommend specially-trained physiotherapists who use manual massage to loosen up the tightened tissue, which is then better supplied with blood. This helps to relieve tension pain.

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Alternative medicine

 

Other forms of therapy have no proven efficacy to date but are sometimes used successfully, such as UVA irradiation, lipofilling, Plateled rich plasma (PRP), local retinoids (vitamin A) or local treatment with progesterone ointment.

There are also possibilities of symptom relief in the fields of alternative medicine and nutrition science - always within the scope of a supplementation/accompaniment of cortisone treatment. Cortisone must never be completely replaced by alternative methods. Our Association offers a specific forum in the members' section, where interested members can exchange information on a wide range of alternative methods.

The Board of the Association does not comment on alternative methods. The Association approves the use of alternative treatment methods only in combination with the recommended ointment treatment.

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Operative therapy

 

For women: in some cases, an operation can be helpful if the vaginal entrance is considerably narrowed but, in general, it should only be performed in exceptional cases and by experienced surgeons, as this can aggravate LS (risk of Köbner phenomenon). In the password-protected area, we offer a forum for "Women before and after surgery" and provide indepth-analysis by experts regarding the different operation options.

For men and boys: LS specialists recommend removing the foreskin completely. With partial circumcision, experience has shown that the white spots typical of LS can spread to the glans, and this can lead to problems with the urethra in the long term.

 

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Current research?

 

See here for current research and studies

Current research deals with the causes and treatment of LS. Some studies describe immunological and hormonal changes that may trigger LS, but the cause is still unclear. Women with LS are more prone to autoimmune diseases, particularly thyroid disease, diabetes mellitus and pernicious anaemia. Therapy studies have shown the superior efficacy of cortisone-containing ointments in comparison to newer immunomodulators such as Pimecrolimus and Tacrolimus. See PDF

Other therapies are currently being studied. LS is considered incurable, but the progression of the disease can be successfully halted in most cases, if continuous care and therapy is provided. It is a known fact that a malignant change of the external genitals, vulvar carcinoma, can occur with patients with LS if their LS has not been treated for many years. However, the risk can be reduced with regular monitoring, care and therapy.

Therapy studies and research are extremely important for further understanding of the disease. The frequency of LS and its significance are clearly underestimated in research and medicine; only a few research groups and doctors specialise in it. Only open communication can increase awareness of this disease.