Resources and organisations

Organisations, support groups, books, videos and more to help you cope with vulval cancer.

Cancer Research UK information and support

Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to prevention and treatment.

We are committed to producing high quality information for people affected by cancer. As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send them a question online.

Cancer Chat is our online forum where you can share experiences.

Specific women's cancer organisations and sites

This is the American National Cancer Institute’s patient information site. Its section on cancer of the vulva is detailed and comprehensive.

Vulval Pain Society is an information and support service for women with vulval pain and discomfort.

The Daisy Network provides help, support and information for women who have early menopause.

PO Box 71432
London
SW6 9HJ

Email: info@daisynetwork.org

The Eve Appeal

The Eve Appeal is a UK national charity raising awareness, and funding research into the five gynaecological cancers - womb, ovarian, cervical, vulval and vaginal. They also provide a gynae cancer information and support service called Ask Eve.

Ask Eve telephone: 0808 802 0019

Ask Eve email: nurse@eveappeal.org.uk

General enquiries: telephone: 020 7605 0100 and email: office@eveappeal.org.uk

Go Girls offer support to women with gynaecological cancers. They are also raising awareness and campaigning for better diagnosis and treatments.

44 The Ridgeway, Upwey, Dorset DT3 5QQ

Tel: 01305 255719

Email: hello@gogirlssupport.org

A national charity offering information and support to anyone affected by lymphoedema. It has local support groups, a helpline and a website. It also produces a range of information including factsheets about lymphoedema and its treatment, videos about self management techniques for lymphoedema, and a newsletter.

Telephone: 020 7351 4480
Email: admin@lsn.org.uk

General support organisations and sites

Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer in the UK. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments. Information is available in other languages.

Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm)
Contact email form

A patient led group that promotes understanding about pelvic radiation disease. Pelvic radiation disease is a late effect of radiotherapy treatment. They support patients and campaign for more research and better treatment for this condition.

Email: info@prda.org.uk

The Sexual Advice Association provide lists of local specialist practitioners, as well as fact sheets on problems such as erectile dysfunction (impotence).

The website no longer has a helpline due to a lack of funding.

A charitable membership body of health care professionals with an interest in the care and support of people with lymphoedema. Their resources include a directory of lymphoedema specialist practitioners.

Tel: 01452 790 178

College of Sexual and Relationship Therapists (COSRT) provides information about what help and therapy is available for sexual difficulties.

Telephone: 020 8106 9635
Email: info@cosrt.org.uk

Switchboard provides an information, support and referral service for lesbians, gay men and bisexual and trans people - and anyone considering issues around their sexuality or gender identity. Their helpline is open every day between 10am and 10pm. They also offer a chat and email service. 

PO Box 7324
London
N1 9QS

Helpline: 0300 330 0630
Email: chris@switchboard.lgbt 

Books

M Heffernan and M Quinn
Michelle Anderson Publishing, 2003
ISBN: 0855723327

An American book that deals with all aspects of gynaecological cancer. Gives concise information alongside women's own stories about their experiences.

Tara Parker Pope
Rodale, 2007
ISBN 978-1905744107

An American book aimed at helping to clear up some of the confusion around HRT.

Kathryn Petras
William Morrow Paperbacks, 2018
ISBN 9780380805419

The Premature Menopause Book provides the latest information on health and emotional issues, explores all of your options, lists resources, websites and support groups, shares the experiences and advice of women going through this experience, answers frequently asked questions and offers the support and understanding your needs.

Booklets and factsheets from other organisations

Videos of people's stories

Find out about the experience of living with and beyond cancer by seeing and hearing people share their personal stories on film. Healthtalk’s researchers created a library of interviews with people who have survived for 5 years or more after a cancer diagnosis.

Find out what people said about issues such as lifestyle choices, physical effects and the impact on work and family.

Find local cancer support and information services

NHS Choices has a service that tells you about local information and support.

Related links