The community nurse phase of my career was the earliest exposure I had to people with lymphoedema. The assessment and application of specialised dressings and garments is not one typically taught on general wards. Time spent with specialised physiotherapists gave me an appreciation for the complexity of routine that people with lymphoedema face daily.
The lived experiences of men with lymphoedema are rarely heard or acknowledged. However, in this article we examine research which speaks with men diagnosed with lymphoedema to hear their stories.
What is Lymphoedema?
Lymphoedema is a chronic condition ‘where the accumulation of excessive amounts of protein-rich fluid in the tissue results in swelling of one or more regions of the body’ as defined by peak organisation Australasian Lymphology Association.
Lymphoedema is the result of a failure in the lymphatic system, in which excess fluid overwhelms and exceeds the capacity of the lymphatic circulatory system to drain and remove it.
Within Australia, the number of people living with lymphoedema is estimated at 70,000.
What Causes Lymphoedema?
The causes of lymphoedema fall into two broad categories-
Primary– Lymphoedema due to a genetic malformation of the lymphatic system. Primary lymphoedema is rare. At birth, about 1 in 6000 persons with develop this condition.
Estimates for primary are 1 in 6,000 to 1 in 10,000. Precise prevalence data is not available due to both underdiagnosis and misdiagnosis within primary care.
Secondary- Lymphoedema due to structural damage of the lymphatics as a result of a number of reasons including- some cancer treatments involving radiotherapy, chemotherapy drugs such as Taxanes, surgery such as lymph node removal (lymphadenectomy), trauma, recurrent bacterial skin infections such as cellulitis and erysipelas, parasitic infection by filarial worms (common in tropical regions), venous insufficiency and heart failure, endocrine conditions such as thyroid dysfunction, obesity and immobility due to paralysis or sedentary lifestyle.
Men and Lymphoedema
Lymphoedema affects females more than males, with research activities increasingly focusing on female Breast Cancer Related Lymphoedema (BCRL).
Researchers from the University of Malta sought to examine and understand the lived experiences of men diagnosed with lymphoedema. For this study, 13 men were recruited who had developed lymphoedema following cancer treatment. The mean age of these men was 68.6 years.
Following interviews with these men with lymphoedema with the researchers, five key themes emerged for discussion.
Theme 1: Adjusting Attire
Men described taking a proactive approach in the self-management of their lymphoedema. It was viewed that by making changes to their clothing and preferred footwear, greater autonomy was realised when it came to spending time with families and friends, (quotes taken directly from the text)
“It’s not easy, but I keep going back to the same point, wearing a stocking is a small price to pay for the discomfort, not adhering leads to greater repercussions. By following my treatment, I can spend more time with my wife and my family”
Theme 2: Changing Lifestyle Activities
Further development of personal agency by modifying lifestyle and exercise activities was seen as crucial by these men. In particular, maintaining conditioning practices had the perceived benefit of gaining control over the effects of lymphoedema.
“You can control the lymphoedema if you, for example, take control of your life. In other words, if you don’t want the legs to be swollen then make that effort. Now you may not, for example, like jogging but you can walk, and you can wear a compression garment. And if you walk every morning you will start to see a difference over time. You can also raise your legs on a chair when watching television, as leaving them hanging increases swelling in the legs”.
Theme 3: Engaging in Distraction
As a coping mechanism, distraction was a popular means used by the men in this study to re-direct thoughts and reduce rumination. For some men, work was the preferred way to be distracted from the symptoms of lymphoedema.
“One should not stop working, going to work is better for the person because one distracts oneself instead of overthinking. When you are at your workplace you need to think about what you are doing. Now if you stay in bed, you’re going to think about yourself”.
For other men, participation in leisure and hobbies provided the distraction they needed.
“Television and reading, help me distract myself… for me they are a bit like therapy”.
Theme 4: Leaning onto Support
The importance of receiving support from different sources was viewed as vital when living with lymphoedema. Support from partners was noted,
“My wife played a huge part in my cancer experience as she was like a sponge absorbing all the emotions. She used to be very positive in my regard. If she was preoccupied, she would not show me and that helped me. I realised that my emotional strength came from my wife and a very few close friends”.
Support and encouragement from health professionals helped establish rapport,
“Because he (physiotherapist) tells you to do these things if you want to, but well, they are for my own good, not for his benefit or anyone else. Although it is a sacrifice, I mean just imagine going for this treatment every day from Monday to Friday for a whole week, coming home with a bound leg which looks like an elephant’s leg because you have 16 metres of bandaging at the very least and that is no joke… it is necessary”.
Leaning into support from other persons diagnosed with lymphoedema provided a social connection value when managing symptoms and emotions.
“I think the best way to support people with lymphoedema is with people who have had lymphoedema, and who are managing it like myself. A buddy system or the support system, not from health professionals, but from actual people who’ve experienced it and managed it because otherwise if you haven’t experienced what they are suffering from, these patients will tell you ‘But you don’t understand.’… and if you say ‘Not only do I understand but I’ve suffered from it as well and guess what I did, I have controlled it by doing the following thing. Let’s see if you can do that”.
Male to male support group activities in particular, promoted feelings of comradery and togetherness.
“I think there were about eight of us, and we used to go for physio every Saturday morning and we also considered that an important date. Physio on Saturday morning and we became friends. Following our physio session, we ended up going for coffee to talk a little bit, so the person moved on instead of staying at home with no one to talk to, no one to share your feelings with, yes trust me, these things make a huge difference… believe me any suffering is decreased”.
Theme 5: Immersing in Spirituality
Spirituality and existential beliefs were seen as protective for men diagnosed with lymphoedema. Some men used prayer as a means to offload the burden of their physical condition. For other men, a mindset of gratitude was practiced,
“I’ve always led a healthy life and there is a sort of feeling sometimes you sort of think “Why me?” but then there are others worse off than me… I haven’t yet got Dementia. You know, I mean frankly I’m so fortunate that even though I have lymphoedema I can still look after myself”.
For other men, immersing in nature and outdoor activities provided as sense of connectedness which counterbalanced negative thoughts,
“On my roof I have a few plants, I would go up there for some fresh air, then I would do some gardening. At the same time, I’m out in the open, those walks in the public garden used to help me greatly regenerate myself both physically and mentally. I used to go for the quiet there, to read a bit”.
Research Conclusion
This research article concludes with the authors encouraging health professionals to consider offering men activity options which promote self-determination. Peer-groups were seen by the men in this study to have high value in terms of socialisation, friendship and shared experiences.
Expert Opinion: Trent Renshaw (ALA Accredited Lymphoedema Practitioner)
As a male lymphoedema practitioner, it’s essential to recognise that the experiences of men living with lymphoedema are often underrepresented in research and clinical practice.
This study highlights that men take a proactive approach in managing their condition, valuing autonomy and personal agency. Adjusting clothing choices and incorporating exercise routines are common strategies men use to regain control over their lives. This resonates with my clinical observations, where small, consistent adjustments can significantly impact both physical symptoms and emotional well-being.
Additionally, the role of support systems is crucial for men coping with lymphoedema. Beyond medical guidance, support from partners, peers, and male-specific support groups fosters a sense of camaraderie and reduces the isolation that can accompany this condition. Encouraging men to engage in peer-led support networks can be particularly beneficial, as shared experiences often resonate more deeply than advice from those without firsthand experience.
Finally, it’s important to acknowledge the diverse coping mechanisms men employ, including work, hobbies, and spiritual practices. These activities provide much-needed distraction and a sense of purpose, helping men manage their condition’s emotional toll. As practitioners, understanding and supporting these individual coping strategies can greatly enhance the holistic care we provide, empowering men to lead fulfilling lives despite their diagnosis.
