Report from the Portsmouth Vulval Pain Society Workshop held at the Queen Alexandra Hospital, 10 April 2010

We held a great day in Portsmouth thanks to the hospitality of Mr Francis Gardner and Dr Bronwyn Hughes, both consultants at the Queen Alexander Hospitals. Around 35 women and 4 partners attended from the south of England. The focus of the day, as with all our events, was education, awareness and informal support. Both David Nunns and Kay Thomas spoke about getting an accurate diagnosis and discussed the treatment options for both vulvodynia and lichen sclerosus. David stressed the difference between the provoked and unprovoked subgroups of vulval pain and how treatments can differ. Kay discussed the importance of combining treatments, giving treatments a chance to work and discussed her own strategies of dealing with vulval pain. Fabia Brackenbury, founder of the Vulval Health Awareness Campaign gave an update on advocacy for women with vulval problems at a national level.

Other topics for discussion were the following.

Fragmented care - a common frustration among women. Just because a diagnosis of vulvodynia has been given this does not always equate to getting better as the treatment options are never explained or offered.

Partner frustration - sometimes helplessness when a partner was in pain. Partners' feelings and concerns are not always aired and shared.

Treatment options - David highlighted four areas for women to explore:

1) medical treatments e.g. drugs;

2) physical treatments e.g. pelvic floor physiotherapy;

3) sexual therapy: overcoming the problems of fear and phobia of penetration and

4) holistic care: general lifestyle habits e.g. taking exercise and relaxation.

Bladder issues were raised as a common problem especially burning, stinging and the feeling of incomplete urination. Women with vulvodynia frequently have bladder problems. This can be a coincidental problem to vulval pain, but some women with vulval problems get a flare up of their symptoms as the urine on the sore skin can irritate. Good emollients (e.g. Epaderm) and drinking plenty of water were suggested. The She-Wee was also mentioned to try keep urine off the skin! Some women have as much disability with their bladder pain as with their vulval pain, and there is an overlap between vulvodynia and overactive bladder syndrome/interstitial cystitis. (This is bladder pain and frequency of urine in the absence of infection. The cause is unknown.)

Discussion of a local support group was raised which would be beneficial for networking and support - watch this space!

Finally we were thrilled to have Diane Hamdy join up who was a founding member of this charity. Diane is currently a Specialist Nurse in Dermatology in Crawley.