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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 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.

Jane Bramley
Tel: 01977 640243

This UK organisation is run by women who have had vulval cancer. They have a support network and a website with useful information about vulval conditions.

Email: vacouk@yahoo.com

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
Email: admin@lsn.org.uk 

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

PO Box 71432
London
SW6 9HJ

Email: info@daisynetwork.org.uk

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

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 helpline for lesbians and gay men, and their families and friends, giving advice, information and referrals.

Tel: 0300 330 0630 (10am - 10pm every day)

Switchboard LGBT+ helpline website

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
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).

Phone: 01452 790178
Email: info@thebls.com

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.

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

Telephone: 020 8543 2707
Email: info@cosrt.org.uk

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.

Information and help