News from LVPSG and the vulval pain community

#ItsNotInYourHead: campaign about provoked vestibulodynia

posted Oct 13, 2017, 3:15 AM by The London Vulval Pain Support Group LVPSG   [ updated Oct 13, 2017, 4:24 AM ]

The Women's Health Research Institute in Vancouver, British Columbia have just launched a campaign to raise awareness about provoked vestibulodynia.

They've made a short animated video about the campaign which you can watch below or on YouTube and there's also a Facebook page you can visit.

LVPSG meeting, Saturday 14 October 2017, 11.00 am - 1.00 pm

posted Oct 13, 2017, 2:58 AM by The London Vulval Pain Support Group LVPSG   [ updated Oct 13, 2017, 3:00 AM ]

The London Vulval Pain Support Group's next meeting will be in the usual central London location on Saturday 14 October 2017, 11.00 am - 1.00 pm. Further details about us and our meetings, including meeting dates for the rest of this year and 2018, can be found on our Meetings page on this website or you can email the group administrator at londonvps@yahoo.co.uk.

Participate in a survey concerning the vulvodynia patient experience

posted Sep 12, 2017, 3:38 PM by The London Vulval Pain Support Group LVPSG

The Vulval Pain Society would like to share with you information about an initiative to learn more about the vulvodynia patient experience. MK&A (Mark Krueger & Associates) is conducting a confidential vulvodynia patient survey on behalf of a global pharmaceutical company. This is an opportunity to elevate the patient voice by sharing your journey in order to enhance the company’s understanding of vulvodynia. As a disclosure, the Vulval Pain Society will not be paid for your participation.

Your participation in the survey is completely voluntary and all of your responses will be kept confidential. This survey will take approximately 60 minutes to complete and an honorarium of 40 GBP will be provided.
 
Survey link: https://www.surveymonkey.com/r/UK_Vulvodynia_Survey
Please complete the survey before Wednesday 27 September 2017. 
 
Should you have any comments or questions, please feel free to contact Jaclyn Nullman, MK&A associate at jnullman@mkanda.com.

Input needed for the Lichen Sclerosus Priority Setting Partnership

posted Sep 12, 2017, 2:14 AM by The London Vulval Pain Support Group LVPSG

The Lichen Sclerosus Priority Setting Partnership are looking for people to take part in a survey they are running to find out what research questions are important to patients with lichen sclerosus and health professionals who are involved with the condition.

For more information about the survey, download the LSPSP's PDF poster or visit their page on the University of Nottingham website.

UPDATE - City, University of London vulvodynia study

posted Sep 12, 2017, 2:07 AM by The London Vulval Pain Support Group LVPSG

The City, University of London study 'Experiences of psychological needs and support among women with vulvodynia', has had sufficient participant response for analysis and is therefore now closed. Any further updates and news about the study will be posted on this page and also on the Vulval Pain Society's website at www.vulvalpainsociety.org

Many thanks to all who participated in the study.

LVPSG meeting, Saturday 12 August 2017, 11.00 am - 1.00 pm

posted Aug 9, 2017, 10:46 AM by The London Vulval Pain Support Group LVPSG

The London Vulval Pain Support Group's next meeting will be in the usual London location this Saturday 12 August 2017, 11.00 am - 1.00 pm. Further details about us and our meetings, including meeting dates for the rest of 2017, can be found on our Meetings page on this website or you can email the group administrator at londonvps@yahoo.co.uk.

Participants needed for study on psychological needs and support among women with vulvodynia (City, University of London, London, UK)

posted Jul 8, 2017, 12:48 PM by The London Vulval Pain Support Group LVPSG   [ updated Sep 12, 2017, 2:21 AM ]

City, University of London are looking for participants for a study on how women with vulvodynia  understand their psychological needs. To take part in the study, you will need to have a diagnosis of vulvodynia or vestibulodynia, you will need to be aged 18 or over and not have undergone menopause, and you will also need to be living in the Greater London area in the UK.

Please note that this is not an online study and data will be collected in an audio-recorded interview with the researcher at a location convenient to you.

Full details of the study are given on the Vulval Pain Society website at www.vulvalpainsociety.org/vps/index.php/research/current-research-requiring-participants/29-current-research-fb/329-eopnasawwv

UPDATE: Please see our post of 12 September 2017 for the latest details on this study

LVPSG meeting, Saturday 3 June 2017, 11.00 am - 1.00 pm

posted Jun 1, 2017, 5:02 AM by The London Vulval Pain Support Group LVPSG   [ updated Jun 1, 2017, 5:07 AM ]

The London Vulval Pain Support Group's next meeting will be in the usual London location this Saturday 3 June 2017, 11.00 am - 1.00 pm. Further details about us and our meetings, including meeting dates for the rest of 2017, can be found on our Meetings page on this website or you can email the group administrator at londonvps@yahoo.co.uk.

Vulval Pain Society Workshop Liverpool 2017, Saturday 10 June 2017, 9.30 am - 3.30 pm

posted Apr 28, 2017, 5:00 AM by The London Vulval Pain Support Group LVPSG

Booking is now open for the Vulval Pain Society's next workshop, which will be held on Saturday 10 June 2017, 9.30 am until 3.30 pm. The venue will be the Liverpool Women's Hospital, Blair Bell Lecture Suite, Ground Floor, Crown Street, Liverpool, Merseyside L8 7SS.

This event is geared towards vulval pain sufferers and their partners. The cost for the day is £15 per person. This includes refreshments at the start of the day, and a sandwich, crisps and tea/coffee for lunch (half of the sandwiches will be vegetarian). Please call us if you have special dietary requirements.

Further information and details of how to book tickets can be found on the VPS website.

Vulval pain leaflet now available as an accessible web page

posted Jan 27, 2017, 10:15 AM by The London Vulval Pain Support Group LVPSG

By kind permission of the Vulval Pain Society, the VPS vulval pain leaflet is now available as an ordinary web page on this website. The purpose of this is to help those who have difficulties with the PDF leaflet and just need to be able to access information as a web page.

Alternatively, you can still listen to the vulval pain leaflet as an MP3 audio file (11 mins 8 secs).

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