Vulval Pain Society (UK)
Kay has suffered from vulvodynia since 1996, and the condition has greatly affected their life and their day to day activities. Living with any chronic pain is a challenge, and they think the added element of genital pain involves feelings and emotions about your ‘worth’ as a woman, your (in)ability to have children, your relationships and your (non existent?) sex life.
Kay is the Operations Director for the UK registered charity, the Vulval Pain Society (VPS). They had been involved in running the VPS for some years before they became a Trustee for the VPS in 2007, and they have also been a committee member of the London Vulval Pain Support Group since 1997.
In 2010 they arranged their first conference attended by both patients and health professionals, with a range of expert medical speakers. They have since continued to run these conferences. Kay loves the fact that patients can access these; their motivation was speaking to my consultant one day and saying “It’s all very well doctors going to medical conferences, but how does the information trickle down to us patients?” and Kay resolved there and then to do what they could do to change that. Their next conference is London 2022 on the 19th February which will be their first hybrid event and Kay hopes many will be able to attend in person as there’s nothing like seeing the exchange of information with others who understand the condition, the buzz during lunchtime is palpable.
Kay was also instrumental in producing a patient information leaflet for vulvodynia which they believe was a first for the UK. They have a wonderful team at the VPS and they are so proud of the work they do.