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Elevating the voices of men with lymphedema: An introduction

Lymphedema doesn’t discriminate: men have it, too, and leaving them out of the conversation risks alienating them from much-needed treatment and support.

The lymphedema narrative carries an overwhelming focus on women, probably due to the fact that women are twice as likely to develop it. Despite this statistic, the risk for developing lymphedema is the same, regardless of gender.

“Anatomically, the lymphatic system is not significantly different between men and women,” said occupational therapy clinical specialist Katherine Konosky in an interview with Michigan Medicine. “There’s no difference between men with lymphedema and women with lymphedema.”

Whether male or female, the pathophysiology of lymphedema is such that when your lymphatic system is compromised, protein-rich lymph fluid accumulates in the tissue of the affected area and causes swelling. From chemotherapy, lymph node removals, and radiation treatments to morbid obesity, intense sunburn, and insect bites — any trauma or damage to the lymphatics can present a risk factor for lymphedema. Even genetics can play a part.

Cancer surgeries and treatments are a common cause for secondary lymphedema. For example, roughly 16% of melanoma patients and about 10% of patients with cancers of the urinary system or genitals develop lymphedema.

I think lymphedema is often perceived as a “woman’s disease” because of its prevalence among breast cancer patients (another disease where men are affected yet lack representation), but even then, gender doesn’t make much difference: a 2011 population-based study found that the incidence of lymphedema in male breast cancer patients aged 65 and over is nearly the same as that of female breast cancer patients.

“Surgery for prostate cancer is the only one that’s gender specific [to men],” Konosky went on to explain. “Otherwise, it’s the same for women: treatment for cancers of the head and neck, bladder or kidney, liver or pancreas, parts of the digestive system – really, any cancer treatment in which lymph nodes are removed or the flow of lymphatic fluid has been damaged or blocked.”

Delaying treatment

“Lymphedema is not gender specific in presentation,” said Dr. Kristina Sanchez in an interview with VEIN magazine. “However, men tend to delay asking about their symptoms and seeking treatment, so they often have more advanced disease by the time they are treated, versus women.”

There’s been research into the gender disparity in symptom reporting, with a 2001 study titled “Somatic Symptom Reporting in Women and Men” citing a number of influencing factors, such as the socialization and social roles of men and women, gender bias in research and clinical practice, and symptom appraisal and assessment by the patients themselves.

In her practice, Katherine Konosky has observed that men address their lymphedema diagnosis differently than women: “Men seem more concerned about what’s going on right now and less concerned about factors affecting the future. I had one male patient who was worried about his leg bandages falling down when he walked, so he duct-taped them in place. That’s concern for the present.”

“In contrast,” she continued, “I don’t think I’ve ever had a male patient say that he typically takes extra care when doing something rough to cover and protect the limb with lymphedema. That would demonstrate concern for the future.”

What we can do

“With men in particular, I find that they must have enough information,” Dr. Sanchez told VEIN magazine. “Because if they don’t understand, they may not ask for help.”

Patient education is key to a good prognosis, but treating or educating men with lymphedema often requires some extra effort from healthcare professionals as they sometimes need a push to be proactive.

“There are very few articles on lymphedema in men specifically,” Dr. Sanchez said. “But knowing that lymphedema affects men and women equally, we just need to know what to look for, what questions to ask and how to talk about it.”

This week on The Lymphie Life: elevating male voices

We know lymphie dudes are out there. They’re our friends and family, our inspiration and our advocates. Lymphedema doesn’t discriminate: men have it, too, and leaving them out of the conversation risks alienating them from much-needed treatment and support.

Now, a blog post about the need to include men in the female-dominated lymphedema narrative just didn’t feel right without some actual male voices, so I reached out on Instagram and Facebook and asked: what’s your experience been like as a male within a female-dominated community?

Emails, comments, and messages flooded in from men around the world sharing their own personal stories and insight. It was incredibly moving and even a bit overwhelming. Because of the big response, I’m going to compile everything into a series of posts that’ll be published throughout the week rather than one long post, so please do check back for the next installment!

We’ve got a wonderful lymphie community with folks of all ages, genders, and backgrounds. This week, though, I aim to elevate male voices within the lymphedema community. I hope you’ll join me!

Are you a man living with lymphedema? What has your experience been like?

11 comments on “Elevating the voices of men with lymphedema: An introduction

  1. Sent from my iPad Best regards, Valerie


  2. Karl E Franz

    Where I live there is virtually nothing. If you want some information you go and find a physical therapy person , they will only tell you yes or no. Most questions are answered on the internet, (You tube) Other wise you are in the dark. I am worried about the long term, like when you get older and can not do the exercise and wrapping. I am not worried about how I look in public as some are.

    • Karl, I’m so sorry to hear there are no resources where you live. That seems to be the case for a lot of lymphedema patients, unfortunately: access to treatment is hard to come by, let alone getting a proper diagnosis. It’s a devastating reality, but one that’s hopefully changing as awareness of lymphedema spreads. You’re right about the internet being a good resource, both for treatment and support. In fact, there’s a new private support group on Facebook for men with lymphedema that you may find helpful: https://www.facebook.com/groups/1944068469164777/ – it could be worth checking out!

      Wishing you all the best,

  3. Hey there!

    I am a 48 year old male who has suffered with Primary Lymphedema since I was about 14.

    In my youth, upon discovery found me getting many tast done to determine why it was happening and this the diagnosis of Primary Lymphedema. Yet, despite the diagnosis, no additional information was offered. No therapy procedures, or even quality of life changes or adaptations were mentioned.

    Both of my feet were effected, at that time. Many years later, when I was in my twenties, living an active lifestyle, I was thrown from a snowmobile, and my right hand ballooned up, not right away, from trauma to my hand, but slowly it began becoming very tender, and then I realized it was markedly more swollen than my left hand. It appeared I had damaged my lymph nodes in my chest during the impact, and my already comprised system was now even more so comprised.

    Seeking assistance from my GP brought little to no information, but through a friend who knew a woman who went through a mastectomy, recommended a massage therapist to perform manual drainage. And after several weeks, my lymphatic system rebounded and my hands, both previously affected, after not seeking any real treatment had returned to a normal state, as well as my left foot. Now, my right foot was all that was effected. So, I carried on living life to the fullest.

    A snow boarding mishap, another snowmobile incident, and working only feet constantly performing labours tasks in a woodworking shop, so me back to retaining lymphatic fluid again. Predominantly in my right hand and right foot, with left foot also retaining fluid but not as severe as the right one. So I then learned of jobst stockings and compression garments and with the use of these items and more lymphatic drainage therapy, I was able to see my hand return to normal again.
    Unfortunately, my feet did not rebound, as they had previously. And again, no additional resources were offered regarding lifestyle choices, such as alcohol consumption and physical activities.

    Now, at 48, the last few years have seen me not bode so well with physically demanding activities. I had to hang up my tool belt, as I can’t perform work as I once did, and heat especially humidity knocks the crap out of me.

    I am an avid fisherman who enjoys many hours on the water, yet now, I can only enjoy a few hours at a time, if the weather is below 75 and humidity is minimal. Otherwise I can barely walk, and I am a mess for 2 days after, as my body deals with the lymphatic fluid.

    The therapy is not covered in our healthcare, nor the compression garments, and my private insurance caps out at $500/ year, so after Inhet a top up, I am on my own. It is very frustrating as I am an outgoing and enthusiastic about life, yet when I face humid weather and heat, I am an unbearable person to be around.

    Recently, this past Xmas, my wife and I took our kids to Disney World, and I was determined to not be a grump, as this was a magical time for our kids to just be kids, I thought I was doing great for the first, 7 days of our 10 day trip, until Xmas day, I felt the stinging burn, of what could only be cellulitis on both of my feet from long days walking in the heat and humidity. It saw me spending Boxing Day in an ER getting IV Antibiotics and additional oral antibiotics to keep things at bay.

    It seems each summer I am prone to a cellulitis infection, so Inhave a standing script at the ready at my pharmacy so Indont need to visit an ER or see my GP, when it happens.

    It is incredibly challenging to see it still not considered a ‘real’ medical problem and that so many physicians don’t even understand that men can experience it as well.

    I would love to offer myself to any folks performing a study on it in men, as we all are effected differently.

    Cheers, and thanks for creating your blog on this challenging issue many face.
    Dale Kerr
    Ottawa, Canada

    • Hi, Dale!
      We’ve since connected on Facebook, although I wanted to acknowledge you here as well for sharing your story. You’ve been through the ringer, but it sounds like you’ve learned how to adapt to life with lymphedema as best you can – through the good and the bad. That’s an admirable trait.

      Thank you for sharing your insight – I look forward to getting to know you further in Alan’s Facebook group!

      Wishing you all the best,

  4. Max Hamilton

    Hi, Alexa, I enjoy reading your blog. I have secondary lympho in my leg after cancer surgery, radiotherapy etc but fortunate to have good support from a local lymphatic drainage therapist. I never feel any sense of discrimination because of being male and from time to time meet women who’ve had breast cancer with subsequent lymphoedema and we discuss common problems. I like the way you keep up with any progress in research which often prompts me to do more reading. Your blog also alerted me to the Ubenimex drug trial which I signed up for and now about two months in. No obvious changes like the woman you quoted a little while back, so maybe it’s too early yet or maybe I’m on the placebo. Either way I still feel like I’m contributing.
    Max Hamilton
    Blackheath NSW

  5. Pingback: Elevating the voices of men with lymphedema: Adapting to a new reality – The Lymphie Life

  6. Andrew Watts

    Hello, as a male with lymphedema I just want to thank you for helping to bring awareness the fact that men can have it. I was properly diagnosed about 17 years ago and since then have won a lost many battles in the daily war that we call maintenance.

  7. I’ve had lymphedema since my teens, am 54, utilize leg pumps, wear compression wraps, have had leg ablations (lessened that trunk like feeling), have had venogram and 2 stents. Awesome doctor! My grandmother had it but was never diagnosed. Sad but great, the advances over the last few years.

  8. Hello, I am also a male 29years old living with lympedema for 17years now! In my small island Cyprus, not a lot know how to help me with.. i Learned to have it in my live and live with it! it would be great to see what other people do with the same lympo-awesome leg or hand!! keep it up guys!!

  9. Well, it’s September 2020 and I’ve just been diagnosed with lymphedema. Not many men around here with it. My local VA Hosp doesn’t really do much so I’m going to try to instigate a Men’s Group. But resources are slim and most internet infor is geared towards women. Anybody have a group and a “How to…” manuel? This stuff sucks… But. oh well…

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