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 us a question online.
Cancer Chat is our online forum where you can share experiences.
Specific women's cancer organisations and sites
Jane is an ex-patient who has had a radical vulvectomy. She is happy to talk to women who are going to have (or have had) a vulvectomy, as well as to their friends and families.
Tel: 01977 640243
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.
This is a national charity that offers information and support to anyone affected by lymphoedema. They run support groups, a helpline and a website. They also produce a range of information including 25 factsheets about lymphoedema and its treatment, 2 DVDs about self management techniques and a newsletter.
Tel: 020 7351 4480
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: firstname.lastname@example.org
General enquiries: telephone: 020 7605 0100 and email: email@example.com
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.
Tel: 01372 744338
The Sexual Advice Association provide lists of local specialist practitioners, as well as fact sheets on problems such as erectile dysfunction (impotence).
Phone: 01452 790178
A charitable organisation. Members include health care professionals from various specialities and people who have an interest in ensuring that people with lymphoedema have access to the care and treatment that they need. Has a directory of lymphoedema specialist practitioners.
M Heffernan and M Quinn
Michelle Anderson Publishing, 2003
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
An American book aimed at helping to clear up some of the confusion around HRT.
William Morrow Paperbacks, 2018
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.