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).

Genital Lymphedema and QOL:                                                                                                         Genital lymphedema can negatively impact a person’s quality of life (QOL) by limiting one’s bowel and bladder habits, ability to participate in intimacy, and interfering with activities of daily living, like walking. Individuals, especially men, are generally reluctant to disclose symptoms of discomfort, dysfunction, and distress regarding their genitalia, and disclosure may rely on more than simply building a trusting relationship (Bullen et al., 2010). Initial disclosure of sensitive issues may be better with written instruments than verbal questioning (Sampurno et al 2016). To meet the needs of clinicians and their patients with genital lymphedema, Dr. Rhian Noble-Jones and her colleagues, Melanie Thomas in Wales and Dr. Shelley DiCecco in the USA, developed the Lower Limb and Genital Lymphedema Questionnaire for Men (LLGLQm) and the Lower Limb and Genital Lymphedema Questionnaire for Women (LLGLQw). Clinicians may complete the form at the bottom of the page to acquire these QOL tools.

Evaluation of Genital Lymphedema:    The genital region should always be evaluated for signs of lymphedema in individuals with lower extremity and lower trunk lymphedema. The same principles and testing apply to the genital regions as to other areas of involvement. One must capture the amount of involvement with reproducible measurements. Check the tissues for pitting and fibrosclerotic or fibroadipose tissue by palpation. Visually assess the skin for irritations, wounds, or lesions. Since the genitalia for males is external, this is typically easier; one must not forget that females may also have internal vaginal involvement.

Treatment of Genital Lymphedema: Complete Decongestive Therapy (CDT) is the gold standard for treating all lymphedema, including genital lymphedema, and consists of compression bandaging/garments, manual lymphatic drainage (MLD), exercises, education on skin care/precautions, and a home program. A full description of the components of CDT is on the “Resource” Page. Here are key concepts for each portion of CDT with genital lymphedema:

• Compression- The day compression must be something the patient can easily get on/off for hygiene and be supportive enough to lift the genitals up against gravity. The night compression can be used more for reduction when gravity is not a concern. Any compression in this region must be breathable to limit infections.

• MLD- The trunk must be addressed first to reduce or clear any fluid in the area first. Next, the pelvic and genital region needs to be cleared, and lastly, a person’s leg should be addressed if needed. The 2 images show how to clear the genital region via the posterior (back) pathway in image A and the anterior (front) pathway in image B. The arrows are numbered in the correct sequence to clear the genitals. One may access a video of the posterior pathway for pediatrics by clicking here or on the image; the pathway would be the same for adults.

• Exercises- The transverse abdominus (or the deepest abdominal muscle that goes across the lower abdomen) and the pelvic floor muscles (or a Kegel) MUST be incorporated into exercises when genital lymphedema is involved.

• Skin Care- The goal of skin care is to prevent skin breakdown and infections. This area is warm and moist, a perfect environment for bacteria to grow and start an infection. Please contact your physician immediately if you believe you have an infection.

How Can a Lymphedema Professional and Patients 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.

There are several published research articles and webinars on genital lymphedema. Click on the different titles to access the material:

• Lymphatic Education & Research Network (LE&RN) Symposium- Genital Lymphedema: The Basics Everyone Should Know Webinar

• International Lymphoedema Framework Presentation- Clinical Particularities of Genital Lymphedema and New Management Solutions Webinar

• Lympha Press Webinar Series- Pelvic Dysfunction and Lymphedema Webinar

• Lymphie Strong Inspiration Group for Lymphedema- Lymphedema and the Pelvic Floor: All You Ever Wanted to Know and More Webinar

• LE&RN Standardized Approach for the Diagnosis and Management of Lymphedema and Lymphatic Disease. Genital Lymphedema Paper

• Genital Lymphedema, a blog by Lympha Press

• Practical Insights on Treating Genital Lymphedema and Its Complications. Today’s Wound Clinic Article

• The Ins and Outs of Genital Lymphedema. Today’s Wound Clinic Article

• Genital Oedema Journal supplement on genital lymphedema

• Lymphoedema Genitourinary Cancer Questionnaire in Urology Follow-up Clinics Article

• Development of the Lymphoedema Genito-Urinary Cancer Questionnaire Article

Research Team on QOL Tool and Leaders in Genital Lymphedema
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