Genital Lymphedema

 Genital Lymphedema:

            While lymphedema can affect any area of the body, articles and textbooks often only mention the upper extremity and/or lower extremity. Genital lymphedema is rarely discussed; however, is associated with at least 10% of the cases of people with lower extremity lymphedema (Fisher 2002). Genital lymphedema can be a result of primary (born with) or secondary (acquired) dysfunctions (see our Home Page for more information on primary versus secondary lymphedema). In genital lymphedema, the swelling can involve only part or the entire genital region.

            Patients with lymphedema often complain of a feeling of fullness or pressure, pain, paraesthesia, increased warmth of the affected areas, redness or swelling, decreased mobility, lymphorrhea, chronic infections, and/or skin changes (Casley-Smith 1997, Casley-Smith 2001, & Williams 2003) Those with genital lymphedema also may complain of a “dragging, heavy or bursting sensation” in the genitals. Excessive swelling of the genitals has been found clinically to hinder sexual activities, decrease libido, be emotionally disabling, hinder urination, and cause pain in the genital region, especially with intercourse (Lewis 2004 & Popovic-Petrovic 2002).

Previous QOL Research on Genital Lymphedema:

            Medical research in the area of quality of life (QOL) has become more prevalent in recent years, instead of solely focusing on objective outcomes of the particular medical condition (Crosby 2003). A person’s medical condition not only involves the objective, or pathological component, but also is impacted by subjective symptoms (Ferrans). Men are generally considered to be reluctant to disclose symptoms of discomfort, dysfunction and distress regarding their genitalia, and disclosure may rely on more than simply building a trust relationship (Bullen et al 2010). Initial disclosure of sensitive issues may be better with written instruments than verbal questioning (Sampurno et al 2016).  Further, interim findings of a current Tenovus Cancer Care (Wales) funded study would indicate that health professionals are likely to address sensitive issues earlier in the therapeutic relationship when using the cancer-related-lymphedema version of the tool, LGUCQ (Noble-Jones et al 2014). This is perceived to have led to earlier identification of genital edema-related problems, more specific, patient-led management, and enabled earlier teaching of dignity preserving self-management techniques.

Current QOL Research on Genital Lymphedema:   

            In 2014 the Lymphedema Genito-Urinary Cancer Questionnaire (LGUCQ) was developed by lymphedema therapist/researcher, Dr Rhian Noble-Jones, in collaboration with patients (with and without lymphedema), urology and oncology medical professionals, lymphedema therapists, academics and an experienced researcher. This questionnaire was incorporated into the pathway of care in three health boards in Wales and results of this study were reported over the summer of 2018.

The Lower Limb and Genital Lymphedema Questionnaire for Men (LLGLQm) was developed and rolled out by Dr. Rhian Noble-Jones and her colleagues in other countries, Melanie Thomas in Wales and Dr. Shelley Smith DiCecco in the USA. The rollout included a social movement approach for spreading the word on this new tool. This rollout and breakout sessions in a few countries provided significant information on the needs of the medical community involved with treating genital lymphedema. The conversations found most lymphedema therapists and medical professionals felt they needed more information in how to evaluate and treat genital lymphedema.

In October of 2020, Dr. Rhian Noble-Jones rolled out the female version of the Lower Limb and Genital Lymphedema Questionnaire for Women (LLGLQw). Both of the tools can be downloaded below for you to use with your patients in the clinic. If you would like to use the tool for research, please contact Dr. Rhian Noble-Jones for permission. You can request her information on the “Contact Us” page.

Recent Research on Skill Levels of Lymphedema Practitioners: The amount and type of training for genital lymphedema is not as consistent. An international survey study was completed to determine the style and content of genital lymphedema-specific training healthcare practitioners received and to assess their confidence in evaluating and providing treatment. The results of this study were published in the Journal of Wound Care in November 2021. The hope is that the information gained from this study will help to shape future training for medical professionals. If you would like to read the outcome of this study, please click this LINK FOR SURVEY or the button below to access the published study on the International Lymphoedema Framework’s Publication Page.

How Can a Lymphedema Professional Learn More About Genital Lymphedema

LymphEd provides an Advanced Treatment of Genital Lymphedema course that covers both hands-on evaluation and treatment techniques in a 2 day course. You can learn more about the course on the “Courses” page.

Several articles already are published on this research and many more are in works. You may access the open access articles with the following links: The Lymphoedema Genitourinary Cancer Questionnaire in Urology Follow-up Clinics and the Development of the Lymphoedema Genito-Urinary Cancer Questionnaire. If you have any additional questions, please feel free to reach out to Dr. Rhian Noble-Jones.

Sincerely,
Dr Rhian Noble-Jones, Lymphoedema Network Wales
 Dr. Melanie Thomas, Lymphoedema Network Wales
Dr. Shelley Smith DiCecco, LymphEd, LLC USA

Please fill out the form below to receive your free Male Genital Lymphedema Tool and/or Female Genital Lymphedema Tool. This helps us keep up with who might be using the tool(s) for future research.

References:

·        Bullen, K., Edwards, S., Marke, V., Matthews, S., Looking past the obvious: experiences of altered masculinity in penile cancer. Psycho-Oncology 2010; 19: 933–940
·        Carter, J., Raviv, L., Appollo, K., Baser, R.E., Iasonos, A., Barakat, R.R., A pilot study using the Gynecologic Cancer Lymphedema Questionnaire (GCLQ) as a clinical care tool to identify lower extremity lymphedema in gynecologic cancer               survivors. Gynecologic Oncology 2010; 117(2): 317-323
·        Casley-Smith J, Casley-Smith JR. Modern treatment for lymphoedema, 5th edition. Adelaide, Australia: Henry Thomas Laboratory; 1997.
·        Casley-Smith J, Casley-Smith JR. Information about lymphoedema for patients. Vol 9th. Malvern, Australia: The Lymphoedema Association of Australia, INC; 2001.
·        Crosby RD, Kolotkin RL, Williams GR. Defining clinically meaningful change in health-related quality of life. J Clin Epidemiol. 2003;56:395-407.
·        Ferrans CE, Powers M. Quality of life index. http://www.uic.edu/orgs/qli/.
·        Fischer M, Wohlrab J, Fiedler E, Marsch W. Genital lymphedema. H&G Zeitschrift fur Hautkrankheiten. 2002;77:70-74.
        Lewis M. Genital lymphedema. A collection of lymphedema papers. Lymphedema People Web site. www.lymphedema.omno.org. Published 2004.
·        Noble-Jones, R., Fitzpatrick, B., Sneddon, MC., Hendry, DS., Leung, HY., Development of the Lymphoedema Genito-Urinary Cancer Questionnaire. British Journal of Nursing 2014; 23(18): S14-S19.
·        Popovic-Petrovic S, Nedeljkovic M, Petrovic T, Vasovic M. Physical treatment of secondary lymphedema of the arm in breast cancer patients. Arch Oncol. 2002;10:261-262.
·        Sampurno F., Ruseckaite R., Millar JL., M. EvansSM., Comparison of Patient-Reported Quality-of-Life and Complications in Men With Prostate Cancer, Between Two Modes of Administration. Clinical Genitourinary Cancer, 2016; Vol.
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·        Williams A. The management of lymphoedema of the lower limbs. J Community Health Nurs. 2003;17(8).
·        Yost KJ, Cheville AL, Weaver AL, Hilli MA, Dowdy SC., Development and validation of a self-report lower-extremity lymphedema screening questionnaire for women. Physical Therapy 2013; published online 3jan2013, doi:                               10.2522/ptj.20120088