About Us

Pelvic Pain Support Network

The Pelvic Pain Support Network is a registered charity. It is a patient led organization with a board of trustees who are all patients or carers, and is run entirely by volunteers. We have an advisory panel of clinicians, researchers and health professionals who have an interest in pelvic pain from many areas of expertise and countries including Belgium, France, Germany, UK and USA.

Our aims are:

• to provide support, information and advocacy for those with pelvic pain, their families and carers.
• to promote the education of the public and the medical profession by raising awareness in all matters relating to pelvic pain and its treatments.
• the advancement of research to increase knowledge and understanding of the impact of pelvic pain.

The Pelvic Pain Support Network is a member of the Long Term Conditions Alliance (LTCA), the International Association for the Study of Pain (IASP), the International Alliance of Patient Organizations (IAPO), the James Lind Alliance (JLA), the National Council of Voluntary Organizations (NCVO), Poole Council for Voluntary Service (PCVS) and the Chronic Pain Policy Coalition. We contribute to meetings at the National Institute for Health and Clinical Excellence (NICE) and the Royal College of Obstetricians and Gynaecologists (RCOG) in the development of guidelines. We have contributed to an NHS Direct user panel which looked at multi-media health information services. At local level in Poole, Bournemouth and Dorset, we initiated and pursued a long term project over several years, involving endometriosis patients and carers in order to highlight important issues for patients. The focus of this work included improving the quality of information for patients, clinician education and the development of local guidelines. These suggestions have been incorporated into the Endometriosis guidelines for the Royal College of Obstetricians and Gynaecologists (RCOG)

The charity actively participates in many local, national and international meetings and conferences, giving presentations and workshops for clinicians, patients and the public. We recently presented data on the patient experience of a wide range of pelvic pain conditions in the UK, France and the USA at a World Congress in Melbourne, Australia.

During 2008 we intend to further develop this website. We would like to add some additional features which would make the site easier to use. We hope you will support our fundraising appeal for this. Support appeal.

If you are interested in receiving our free newsletter of news items, events we have attended, pelvic pain in the media, etc please contact us via the subscribe to our newsletter button. This will only be sent once every few months. Please see our privacy policy. We would be pleased to hear from those with an interest in pelvic pain whether they are patients, carers, clinicians or researchers.

Editorial Board

The Editor of the website is Judy Birch who has a degree in education with a focus on psychology. Judy is the lead contact for the charity and an expert patient in the field of pelvic pain. Judy is assisted by Judy Jansson, Health Information Manager at Poole Hospital and Trustee of the charity. Our medical advisory panel assist in reviewing the information on the website and in our information leaflets. They have also contributed articles in their respective areas of expertise.

Medical advisory panel:

Pr M Canis, Professor of Gynaecology & Obstetrics, University Hospital, Clermont-Ferrand, France. ESGE & PAX Society Board member, special interest: adhesions, endometriosis, oncology. Editor of Gynecologie, Obstetrique, Fertilite.

Dr E Carr, Head of Pain Research and Education, Council member British Pain Society, IASP member, Associate Dean of Institute of Health and Community Studies, Bournemouth University, UK

Mrs J Childs, Msc, Practice Manager, Bournemouth and Poole Primary Care Trust, UK

Ms S Durr, Medical student at the University of Regensburg, Bavaria, Germany

M Hibner, MD, Director of Gynaecologic Surgery, Obstetrics and Gynaecology, St Joseph's Hospital, Phoenix, Arizona. Special interest: pelvic pain, endometriosis, pudendal neuralgia

Dr S Jones, Radiologist, Poole Hospital, UK

Dr JJ Labat, Urology, Neurology, Physical Medicine & Rehabilitation, University Hospital, Nantes, France. Special interest: pelvic pain, pudendal neuralgia

Dr J Malawana, Deputy Chair Education and Training, UK junior doctors committee, British Medical Assocation. Special interest, obstetrics & gynaecology

Pr A Maubon, Head of Radiology and Medical Imaging, CHU Limoges, France

Mr A Pickersgill, Gynaecologist, laparosocopic surgeon, Stockport, UK

Dr H Poole, Senior lecturer in psychology, Liverpool John Moore's University and Pain Relief Foundation, UK. Special interest: neuropathic pain

Pr A Rapkin, Professor, Department of Obstetrics and Gynaecology, David Geffen School of Medicine, UCLA, USA, special interest: pelvic pain

Pr K Reed, Assistant Research Professor, Department of Surgery, Boston University School of Medicine, Boston, Massachusetts, USA

Frank Tu, MD MPH, Director, Division of Gynecological Pain and Minimally Invasive Surgery, Evanston Northwestern Healthcare

Dr T Riant, Anaesthesiologist and Pain Specialist, Pain relief clinic, Centre Catherine de Sienne, Nantes, France

Pr Dr U Ulrich, Gynaecology & Obstetrics, Berlin Endometriosis Centre, Germany.

Dr JP vanBuyten, Anaesthesiologist and Pain Specialist, St Niklaas, Belgium, Special interest Neuromodulation

Dr D Wiseman, Pharmacologist, Dallas, Texas, USA, special interest: adhesions

Editorial panel:

In addition to the above medical advisory panel members, the following clinicians, researchers and health professionals have contributed to reviewing the website content:

Pr A. Dickenson, Professor of Pharmacology, University College London

Pr D Drossman, Professor of Medicine & Psychiatry, Internal Medicine & Gastroenterology, Chapel Hill, N Carolina, USA. President of the Rome Foundation, Co-Director of the UNC Center for Functional GI and Motility Disordersof the University of North Carolina.

Dr G Archard GP, Dr M Johnson GP, Dr M Knapton GP

What benefits do self-help groups provide?

The first and most obvious benefit provided is that to the individual. When they first contact a group many people describe feeling a tremendous sense of relief: "I thought I was the only one in the world to feel this way or to be in this situation."

People benefit from participation in a self help group in many different ways. Some of the most common benefits are:

• reduced feelings of isolation and loneliness
• being able to access relevant information and literature
• having the opportunity to share experiences
• being empowered to take an active role in their own health and wellbeing
• an increase in self esteem
• an increase in self confidence
• having the opportunity to develop new skills
• a greatly increased social circle
• the opportunity to give as well as receive help
• reduced feeling of stress, anxiety and fear
• opportunities to talk to people who have "been there"
• swapping and learning new and practical ways of dealing with problems
• feeling more in control
• being inspired and gaining support from others' experiences
• receiving sympathy based on empathy

By providing all of these benefits to the individuals, by improving in practical ways their physical situation and, at least as importantly, their mental outlook, the self help groups both directly and indirectly are helping the families of those affected.

Self help groups are a resource the health and social services already have freely available to them. Thousands of groups, representing an uncounted number of members with first hand experience of a bewildering number of conditions, able to collect and collate data, provide practical support, advice, information and empathy. Does every carer, sufferer, teacher, lay worker, human resource manager, school nurse, health page editor, health and social care professional know where to find this support? Sadly the answer is all too often no.There is almost certainly a failure of those responsible for the health service and social services to recognise the value of these groups. If one compares the budget for health and social services with what these groups achieve using unpaid volunteers, fundraising, sponsorship and, if they are lucky, the one-off lottery or local authority grant then the failure to publicise and utilise self help groups effectively seems to be a terrible waste.

(with thanks to UKselfhelp for the above)