Calling All Lymphedema Medical Professionals!!
We Need Your Help!
Read Below to Learn More about Genital Lymphedema and
How You can Help!
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 Male 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 has been incorporated into the pathway of care in three health boards in Wales and results of this study will be reported over the summer of 2018.
There is still a need for a generic, non-cancer-related genital edema self-report tool. The Lower Limb and Genital Lymphedema Questionnaire for Men (LLGLQ) has been developed and is being 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 lack of additional research funding has led to an open, social movement approach for spreading the word on this new tool.
What can medical professions do to help?
Data needs to be collected on the use of this tool in medical settings on males with primary or secondary genital lymphedema. So for medical professionals in the United States and Canada this tool is now available as a free download below. You can download the questionnaire as often as you like, but we request that you register your details when you download it so that we know how far it has reached. In addition, Dr Rhian Noble-Jones (firstname.lastname@example.org) will be reaching out to the therapists that have downloaded the LLGLQ tool to discuss their experience. In short,
· Did it help the men ‘tell it as it is’?
· Will you ‘tell it as it is’? Did it reveal more information or greater understanding than previous assessments of this patient group? Did you use it for review as well as initial assessment?
If you have any additional questions, please feel free to reach out to Dr. Rhian Noble-Jones.
Dr Rhian Noble-Jones, University of Glasgow, Scotland,
Melanie Thomas, Lymphoedema Network Wales
Shelley Smith DiCecco, LymphEd, LLC USA
Please fill out the form below to receive your free Male Genital Edema Tool:
· 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.
4, No. 4, 284-9
· 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