Every month, talkhealth hosts a number online clinics with panels of experts on a particular condition or issue. Last month, we held one in partnership with the British Skin Foundation on lichen sclerosus.
Our panel included consultant dermatologists Dr Anton Alexandroff (BSF spokesperson), Dr Nevianna Bordet, Dr Karen Gibbon and Dr Jane Sterling (expert in skin and vulval infections).
Lichen sclerosus is a chronic skin condition that causes itchy white patches on the body. It’s more common in women over 50 but can affect anyone, and is more prone to show up around the genitals (although it can appear anywhere). Patches tend to form around the vulva (opening of the vagina) and anus for women and girls and on the foreskin and end of the penis for men and boys.
Although there’s no cure for lichen sclerosus (LS), it is manageable. Below are some of the questions and answers from the clinic:
I have biopsied lichen sclerosus patches on my hips and they are growing and spreading. Nothing seems to be working. Is there anything I can do?
Dr Gibbon: Extra-genital LS is a relatively common condition which we see in dermatology clinics. The treatments for this do vary. In general, you start with cream/ointment in the form of super potent steroids like Dermovate or Nerisone Forte. They need to be used daily for several months (initially up to three months) to see if they are going to be effective. If this is not helping or the patches are still spreading, then it’s possible to move to a type of specialised light treatment i.e. phototherapy. Different dermatology units have access to different types of machines for this.
There are also some oral treatments to try for LS. These, in general, are aimed at dampening down the immune system and act as anti-inflammatories. Such treatments include Methotrexate and would only be started within a dermatology unit setting.
My clitoris seems to be slowly being buried. Is there anything I can do to halt the progress of this fusing?
Dr Bordet: Fusion of the labia is due to scarring that results from inflammation. Potent topical steroids are very effective at controlling LS when used appropriately, but if the fusion is continuing, perhaps your disease is still active and you may need to increase the use of your steroid cream temporarily to prevent further fusion. Your doctor should be able to advise you on this once they examine you. Once the LS is under control and the fusion has stopped progressing, you can drop back down to the twice-weekly maintenance use. Hormone treatment such as HRT and topical oestrogen creams or pessaries do not help with fusion.
Although the clitoris can become buried as the labia fuses at the front, the urethra (opening where you pass urine) won’t be affected as it is located higher up inside. If the labia fuse completely (and this is extremely rare!), you would need to have an operation to open it up as you then may have problems passing urine.
Are any specific supplements that would be beneficial to take? Is soaking in Borax a good idea?
Dr Bordet: There are no supplements that I would recommend for treating LS. I would also caution against using Borax. Borax is an alkaline mineral salt used in washing powder, disinfectants, whitening protects, and anti-molds. It’s also often used as an insecticide – particularly against ants – and this means it is toxic at a certain dose. It can also cause irritation of the skin which can make your LS worse.
I wash with Dermol in the shower, but should I moisturise or put Dermovate on first?
Dr Sterling: It can certainly be confusing when you are given more than one cream or ointment to use – which for where and in what order? The two main parts of treatment for lichen sclerosus are an anti-inflammatory cream to counteract the inflammation (usually a topical steroid cream or ointment) and one or more moisturisers to add some extra protection to the skin that is made more fragile by the lichen sclerosus process.
Dermol in the shower or bath is a soft and easy way to use moisturiser, but often not greasy enough (and therefore not protective enough) compared to some other creams. You may find that a slightly greasier cream is better as a leave-on moisturiser. There are many available; some come in pumps (creams) or in large tubs (ointments). These can be applied after a bath or shower and as many times a day as you wish. If you are using a steroid ointment (such as Dermovate) then that will act as a moisturiser at that time. If it does not feel moisturised enough, then apply the rich moisturiser a little later.
Is LS linked to my underactive thyroid? I also have type 2 diabetes.
Dr Sterling: LS is more common in people who have an immune system that is more active – causing auto-immune disorders (such as thyroid disease), so the two problems can sometimes be found in the same person. Diabetes type 2 has other causes, such as diet and weight, but type 1 diabetes (the type that starts early and always needs insulin) is another autoimmune-driven disorder.
What’s the difference between lichen sclerosus and lichen planus?
Dr Bordet: Although lichen planus (LP) and lichen sclerosus (LS) are different conditions, some patients do seem to have an overlap of symptoms. LP can affect the vagina internally as well as the outer vulval part of the skin. It can also affect the mouth or gums, usually with sore areas. Skin can feel very itchy while the genital area is usually painful (and sometimes itchy too). The scalp can also be affected by LP and can even lead to scarring hair loss. LS, on the other hand, usually only affects the genitals. It does not affect the vagina internally and typically causes itching, and if severe, can lead to pain. It can affect the skin, but much more rarely than LP and is usually much less itchy (unlike LP, which is one of the itchiest skin conditions).
If your specialist feels you may have either LS or LP, you may have an overlap between the two conditions. Vulval LP and LS are treated in the same way, with potent steroid creams or ointments.
Does LS put us at greater risk if we catch coronavirus?
Dr Gibbon: With LS, the immune system is over-active (rather than under-active) in a very specific way. It is interested in the part of our skin where the top layer (the epidermis) meets the lower layer (the dermis). LS does not have the ability to upset any other aspect of our immune system or stop it working efficiently to fight off viruses such as Covid-19.
I use Bethamelasone when my LS flares up but should I be using it as a preventative as well?
Dr Sterling: Treatment for LS is a long-term challenge. The betamethasone cream or ointment is a good treatment for the skin problem, but it sounds as if your symptoms are definitely not under control, and you may not be using it enough. It can be difficult to know how often to use such a topical steroid treatment – too much, too often may thin the skin and make it more fragile, but too little too rarely will allow the inflammation of lichen sclerosus to cause damage to the skin. Getting the right balance of ‘just enough’ treatment is the aim!
Without seeing your skin, it is difficult to know what would be best for you, but I often suggest daily or even twice-daily treatment with something such as betamethasone for a week or two for a flare, and then reduce down to once or twice weekly maintenance. It also helps to use an unperfumed moisturising wash instead of soap or shower gel and to apply a rich moisturiser after washing (available from the chemist or on prescription).
Is it a reasonable request to have a yearly check on my lichen sclerosus?
Dr Sterling: Lichen sclerosus is a long-term condition and treatment needs to be long-term as well. In an ideal world, it would be kept ‘under review’, but that is ideally done with you, the patient, involved. You need to ‘keep an eye on things’, although I appreciate that it can be quite a challenge to try to examine your own vulva with a mirror, good light and perhaps the right sort of glasses. It is easier if someone else examines for you!
If your LS is generally under control, then you and your GP should be able to manage it together. It is useful to have an annual visit to the GP for this problem, for a yearly check of the skin and a reassessment of the amount of treatment needed. As others have mentioned, your GP needs to know that they are prescribing the right treatment for you, and might want to reassess to ensure that they are not over-doing or under-doing the treatment.
Some GP practices have a system by which they can call you back for an appointment at a set time, but many practices expect you to make an appointment yourself when necessary. If you need to be seen by your GP to assess the condition of your skin or the amount of treatment needed, you may need to plan the appointment yourself.
Do you foresee a cure in our lifetime? Or in the near future other successful treatment options?
Dr Sterling: LS is a mild or limited disorder of the immune system, in which only part of the body is affected. Many of the treatments available now that suppress the immune system have a wide effect on the whole immune system – which brings other somewhat risky problems such as being more likely to get infections.
However, there have been huge advances in developing immune-suppressive treatments that have a much more limited effect on just part of the immune system – these are now being used to treat other conditions like arthritis and some skin problems such as psoriasis. So although there is no treatment like this for lichen sclerosus right now, it is possible that an immunosuppressive treatment specific for lichen sclerosus might be developed in the future.