The British Society for the Study of Vulval Disease has a new list of vulva clinics on its website at www.bssvd.org for UK doctors who treat lichen sclerosus.
This is an English based non-profit. In England it is not considered ethical to advertise or promote the services of specialist doctors. If you are a visitor to this site from the USA or Canada, please bear this in mind. For legal reasons under UK law, recommendations are not given. However, it is sometimes possible to suggest a doctor in your locality, who is known to be working in accordance with the guidelines of the BSSVD, ISSVD, British Association of Dermatologists (BAD) and the European Vulval Organizations and who are known to have helped those with LS, and is keeping their skills and knowledge up to date with regard to vulval/penile skin diseases. Given the considerable amount of time it takes to obtain information about doctors who treat LS, this non-profit is looking at making information available under a legal disclaimer and via a membership/subscription scheme. This is something that the very successful USA non-profit for Vulvodynia (NVA) have in place and it allows them to have funds to further education and to fund research. Something that this non-profit is keen to do.
Please do not email asking why doctors names are not shown on the stem cell page. For legal reasons, replies cannot be made to enquiries of that nature. If you have had stem cell treatment and you have concerns about the outcome, please contact the doctor in person and ask for your concerns to be addressed. The work of Dr Casabona, in Italy, has shown that this treatment is best offered in a multi-disciplinary clinic, or at a dedicated clinic for stem cell research.
Some useful guides to finding doctors who are well educated in vulval disease or who are willing to learn more and who have educated themselves to treat you for your best interests are set out below. Patients want to achieve the best advice and care but often do not know what a doctor needs to offer.
A well educated doctor:
Will NOT tell you that steroids thin the skin (lichen sclerosus thins the skin, which will continue to thin without treatment)
They will not tell you that you are too young to have lichen sclerosus and that it is ‘an old woman’s disease’ – children as young as two years old can have LS
They WILL tell you about the safe amount and correct way to use your steroid treatment for your own case
They will NOT tell you the name of your disease is lichen sclerosus ‘et atrophicus’. Et atrophicus is now an out of date term as defined by the ISSVD in 2006. The condition is now known as just lichen sclerosus and all previous names used for this condition are completely and totally out of date and no longer apply
They will NOT send you away with a treatment, without showing you where to apply it, and telling you how often and how long to use it for. They WILL tell you how to manage a flare up and what to do if that advice fails
They will NOT tell you to use the treatment sparingly or as required. Neither of these terms is considered to be correct medical advice and neither is the advice to use ‘a pea sized’ amount. Not all vulvas are the same size nor do they require the same amount of treatment. An educated doctor will know how much you need to use for your own case. Take a mirror with you and ask to be shown where to treat and with how much ointment
They WILL tell you about the effectiveness and importance of using emollients/moisturizers, every day to support the skin and relieve the ‘itch/scratch cycle’
They WILL allow you to ask questions and will be honest with you if they do not know the answers
Steroid creams contain parabens (or presevatives) that can be skin irritants. Therefore, ointments are often a better choice. In the USA, compounding pharmacies will mix steroids into bases and often these can be the cause of burning senstations, rather than the steroid itself.
CAN PATIENTS HELP DOCTORS WITH EDUCATION and will this help other patients?
YES. By asking your doctor to take a membership of either the BSSVD (www.bssvd.org) or the ISSVD (www.issvd.org), EADV or ECSVD. Your doctor will have the opportunity to interact with some of the most educated and knowledgeable doctors in the world. Every patient can work towards education to improve the lives of the children who are growing up with this life-long, incurable skin condition.