Past events

A recap and synopsis of past events, meetings and workshops held by the Vulval Pain Society.

Report from Canterbury Vulval Pain Society Workshop at Kent and Canterbury Hospital, Saturday 12 April 2008

The Vulval Pain Society held a workshop for women and partners with vulval problems at the Kent and Canterbury Hospital on 12 April 2008. We were fortunate to be invited by Dr Claire Fuller, who is a Consultant Dermatologist in the Canterbury area. It was a great day with around 25 women and partners attending. Most of the women had vulvodynia and lichen sclerosus and we were able to share both information and patient experiences amongst the group.

David Nunns gave a general lecture on the management of vulvodynia, sex-related pain and lichen sclerosus and covered many aspects of treatment.

In the afternoon a lecture was given by Nathalie Bachet, a local acupuncturist, to talk generally about acupuncture in chronic pain management and as a treatment for general stress, anxiety and well-being, which are common problems in chronic conditions. Many of the women there had tried acupuncture with success, so the talk was of interest to the group.

Many themes recur in workshops and this really relates to access to good medical care and the current problems of fragmentation of care between different specialists, e.g. physiotherapists, sex therapists and doctors. Another recurring theme was the lack of time patients get with doctors and also how often there can be perceived to be a lack of a management plan and cohesive treatment. Things are better, however, than they have been in the past with more focus on diagnosis and the realisation that teamwork is probably the likely way forward for many women with vulval pain.

The information days are a good resource day to get contacts of health professionals and tips on treatment that are not necessarily medically prescribed. The day was very informal - as most workshops are - and was focused on women and their partners.

Our thanks go to Claire Fuller for being our host.

Report from Belfast Vulval Pain Society Workshop held at Belfast City Hospital, 1 September 2007

The Vulval Pain Society held a workshop at the invitation of Sonia Hutchinson, a dermatologist from Belfast. Seventeen women attended on the day and these were patients from Sonia's practice, plus women in the area whom we had approached through our database and women reading about the day on the internet. I gave a standard lecture on managing vulval problems and getting a diagnosis, and discussed vulvodynia and lichen sclerosus. Although the two conditions are very different there is a considerable overlap as concerns the impact on the individual. There was generally a lively discussion about different treatments. In the afternoon we had a very informal session where people could ask questions.

For me the highlight of the day was the interaction between the health professionals who had attended (doctors and nurses) and patients themselves; there were clear failings in communication issues between us as the health professionals and patients in terms of reassurance about treatments and instructing patients how to treat themselves. For example, there were still concerns about the use of steroid ointments on the vulva as in lichen sclerosus and about the side-effects of taking tablets such as amitriptyline and gabapentin, which are usually prescribed for vulvodynia.

There is still a huge amount of work to be done in terms of awareness, not only in the hospital setting, but amongst general practitioners and nurses. I have personally learnt that as a doctor I need to really stress the importance of telling patients how to take their treatment because if patients are unsure they generally stop the treatment. I feel that sometimes patients do not give the treatment the opportunity to work.

Many issues were discussed and many women shared their concerns of isolation and frustration particularly prior to a diagnosis. Sexual issues and difficulties were mentioned, in particular, tightening of the lower vaginal muscles, which can lead to painful sex; this was the case for both lichen sclerosus and vulvodynia. Many of the women with lichen sclerosus were clearly worried about the risks of cancer in the vulval skin; this risk, we believe, is very low, certainly lower than 5%. Self-examination was stressed as being extremely important.

I thought that the day was very enjoyable and informal and would encourage any woman reading this who wants more information to come along on one of these days, as the day is predominantly for women rather than for the health professionals.

Keep an eye on the website for future dates.

David Nunns
Consultant Gynaecologist

BSSVD Cardiff 2006 - VPS represented at National Medical Conference

We were thrilled to be invited to the Biennial Scientific Meeting of the British Society of the Study of Vulval Diseases (BSSVD) held in Cardiff in April 2006.

This Society has been established for many years and is composed of doctors and other health professionals with an interest in vulval disease. The group consists mainly of dermatologists, genitourinary medicine physicians and gynaecologists. The aims of the group are to promote the understanding and research and treatment of vulval conditions. They are an influential group involved with producing guidelines on the management of vulval problems and also advising other medical institutions on the management of vulval conditions.

There was a heavy emphasis at this conference on the patient's perspective of vulval diseases; not just vulval pain but all vulval conditions including lichen sclerosus, lichen planus and vulval intraepithelial neoplasia (a premalignant condition of the vulva).

It was great to hear such an emphasis placed at the conference on the impact of the condition on the individual woman. The Vulval Pain Society was invited by the Chair of the conference, Professor Alison Fiander, to present an update on our work so far and Kay Thomas gave an update to this Society. It was very encouraging for us to hear so much emphasis on the patient experience and the future aims of the Society, chaired by its current President, Professor Wojnarowska, will include the experience of the patient at almost every level from writing guidelines to research and conference material. The shift is changing from a medically-based, doctor-led management of patients with vulval problems to a more patient-centred package of care involving different professionals with different skills. It is encouraging for the future!