Pelvic Pain Support Network

Chair: Anne-Marie Taylor

Secretary: Jane Burns

Member: Carolyn Martindale, Jennifer Merriman, Judy Jansson, Trudi Brackstone, Julia Hough, Rachel Zillwood, Miznah Al-Abbadey

The Pelvic Pain Support Network was established as a registered charity in 2006. It is a patient led organization with a board of trustees who are all patients or carers. Our medical advisory panel is multi-disciplinary and includes experts from many countries: UK, France, Germany, Spain, USA, Australia and areas of expertise: Gynaecology, Urology, Gastroenterology, Pain medicine, physiotherapy, radiology. We cover all pelvic pain conditions such as dysmenorrhoea, endometriosis, bladder pain syndrome (IC), irritable bowel syndrome, pudendal neuralgia, vulval pain as well as many less common conditions and those who do not have a diagnosis.

The aim of the charity is the improvement of quality of life of those with pelvic pain.

1. To provide support, information and advocacy for those with pelvic pain, their families and carers.
2. To speak to health professionals and the public about issues of importance to those with pelvic pain.
3. To encourage research to increase knowledge and understanding of patients with pelvic pain.

PPSN supports those affected by pelvic pain in many European countries. This is via individual online peer support and collective support through mainly web-based information. We request assistance from members of our medical panel in answering individual questions and in reviewing informaiton. We have received several awards for our work and have also gained the Information Standard accreditation for our patient information.

PPSN actively participates in relevant health technology appraisals and at many local, national and international meetings and conferences for clinicians and policy makers.

We contribute the patient perspective to research proposals from the protocol stage and throughout the study.

• A voice for those affected by pain in Europe
• Awareness campaigns ( for the public ) about the impact of pain on all those affected by it.
• To gain greater attention to chronic pain amongst policy makers
• Networking with other European Patients Organizations, Professional organizations and other stakeholders to get pain higher up the health agenda in Europe.