Genital Lymphoedema

What are the educational needs of health professionals?

Genital oedema is a complicated condition that can cause physical, psychological and social impact. From prior research, we know that lymphoedema professionals do not fully appreciate the impact of the condition and have unmet educational requirements. This ILF education project is aiming to further understand the educational needs and tools that we should be developing, from both patients’ and professionals’ perspectives.

Genital Oedema Project

The Lymphoedema Network Wales Framework, one of the 15 national frameworks of the ILF, has recently completed a large survey with 688 participants from 31 countries about the education needs of health professionals managing patients with genital lymphoedema. The study was supported financially by the Tenovus Cancer Care foundation (

The study showed a huge need for stronger focus on the identification and treatment of genital oedema, improved training and education of the managing specialists and development of new or better suited products targeting patients who live with genital oedema.

Based on the study, the Lymphoedema Network Wales Framework and the ILF have together agreed to initiate a new, joint initiative that will eventually lead to the development and publication of a Genital Oedema position document on genital lymphoedema in approx. 2-3 years’ time. The elaboration and publication of the Genital Oedema Position Document will be considered a Phase 2 of this project and be subject to a separate fee.


Genital Oedema Project Phase 1

The first phase of the project will include the following elements:
  • Elaboration and publication in regular issues of the Journal of Wound Care (JWC) of three articles dealing with key elements of the study including:
    • Clinical Paper – explaining what genital oedema is, why it can occur, signs and symptoms and physical/ psychological impact. Two case histories from a male and female perspective. Blending into why there are issues with genital oedema with regards to education and setting up the studies that we have done.
    • New Research – Genital Oedema Survey – International paper. Will highlight global differences in health care workers perspectives on genital oedema education, and recommendations for the future about what health care workers should understand about Genital Oedema including gaps in knowledge about consent, ethnicity challenges, wounds in the genitalia and paediatric genital lymphoedema.
    • New Research-Genital Oedema Focus Groups. Reporting the results from the focus groups from Australia, USA, and UK with health care workers. More in-depth reports of the issues surrounding genital oedema which supports paper 2 as well as plans for the future including the development of media resources.
  • Collation of the three articles into a supplement which will be available for free download from the ILF website and from the JWC website.
  • Elaboration and open space / focus discussion with industry supporters and other stakeholders of the second phase of the project including to give input to the preparation and development of the position document.





The Genital Oedema Project is a partnership between: Lymphoedema Network Wales and International Lymphoedema Framework

The project in funded by the charity Tenovus Cancer Care.

Genital Lymphoedema Videos

A number of educational videos have been created.

More details