I’ve invited Matt Hazledine of Lymphoedema United to share his experience of living with lymphedema in the legs in this question and answer blog. This is not meant to diagnose or treat your condition. There are some links to products mentioned by Matt, to determine the best products to treat your lymphedema, consult with your certified lymphedema therapist. Some products are linked to amazon, where as an amazon associate I earn from qualifying purchases which helps to support my blog.
On a day-to-day basis, what does it mean to live with lymphedema in your leg?
My answer today is totally different to my answer during the few years after diagnosis, that’s for certain! After being hospitalized for two weeks with a severe bout of cellulitis in 2011, my left leg became swollen by almost 60% bigger than my right leg.
At the age of 40, with young daughters and a brand-new business venture, life was good until lymphedema came completely out of nowhere. It became totally life changing in so many ways, physically and psychologically.
The challenges include finding appropriately sized trousers, jeans and shoes that still look smart but hide away the obvious size disparity between my legs, whilst remaining comfortable to wear. The existing wardrobe became instantly redundant and buying off the shelf was not an option. However, there are solutions available, it’s just a question of research and trial and error before I was able to find the perfect fit.
The daily self-management regime is very important when living with lymphedema and I have got more disciplined with this as I have gotten older. I wear Jobst Elvarex Made-to-Measure compression stocking 24/7, with a Class 4S during the day and a Class 2 at night. If needed, I use Haddenham Easy Wrap Velcro compression wraps to bring any additional swelling down, if I’ve been on my feet all day.
Good skin care every day is vital in keeping infection away, especially cellulitis, so I use an Dermol 500 emollient on my leg before donning my garment. Dry brushing and a bit of self-massage helps the lymph to move, in addition to the all-important gentle exercise involving the cross-trainer, squats and stretches.
I am lucky in that 6 months after diagnosis, I found a wonderful, certified lymphedema therapist who taught me how to self-manage to control my lymphedema, rather than letting it control me. Although it took a few years to reduce my leg to the size I was happier with, it is important that I maintain my daily routine to try and prevent any rebound swelling. It’s a team effort with my lymphedema therapist but ultimately, it’s my leg and I have to put in the time and effort to help myself.
What is something that would surprise people to know about living with leg lymphedema?
I had to replace my entire wardrobe of jeans, trousers, suits and shoes as they no longer fitted, so I gave them to the local charity shop. Replacing these items online or from traditional shops was practically impossible. When I did find items that worked for me, it was to hide away my lymphedema so as not to show the disparity in leg size.
It took eleven years for me to have the confidence to wear shorts in public or even at BBQs with friends and family. I was too embarrassed and didn’t want to draw attention to the size of my leg or receive unwanted questions.
It was a hot summer day when I ‘went for it’ and wore my shorts to an appointment with my Reflexology Lymphatic Drainage (RLD) therapist. I was extremely surprised that no one stared or asked questions and that gave me the confidence to wear shorts again, this time with close friends and extended family.
I had allowed my lymphedema to control me and at last, after eleven years, I had taken back control of this situation. So, I learnt from this experience that I was more bothered than other people were about how I looked. I hope this inspires others to do the same. It was really liberating.
What have been some of the most effective treatment strategies for your leg lymphedema?
It has been very difficult to reduce the size of my left leg since diagnosis. Professors, doctors and therapists have tried every treatment and product available over many years but unfortunately, surgery was the only hope of reducing volume and, importantly, maintaining it.
Prior to lymph node transfer and liposuction surgery, I did achieve some success with multi-layer lymphedema bandaging (MLLB) (also called multilayer compression bandaging or ‘wrapping’), which would usually be done every 6 months, for a 3-week period.
I would experience a reduction in volume around 30%, which was incredibly motivating. Sadly, after resuming standard compression in a Class 4S, the swelling would rebound a few weeks later. This wasn’t a long-term solution for me personally, although very effective in the short term.
There are many treatments available to help people with lymphedema and I do have regular sessions of manual lymphatic drainage (MLD), in addition to using a Lympha Press compression pump and I do dry brushing on my leg too. Basically, if it can help me maintain my leg size, I’ll do it!
After 11 years living with lymphedema, are you still learning new things?
Absolutely! As touched on earlier, I am introducing treatments to my own self-care regime that I hadn’t heard of before, including Reflexology Lymphatic Drainage and dry brushing (affiliate link). If it can help me maintain my leg size, I’ll do it!
I have recently become aware of the importance of diet and by that I mean the significance of different food groups in my diet. I did not realize that some foods are counterproductive for people with lymphedema and therefore, I am keen to learn more about lymphedema diet. If I can stop further swelling by cutting out unhelpful food or improve my health and lymphedema by introducing specific items, then count me in.
This year I am also keen to learn about specific exercises that are more beneficial to people with lymphedema. I am guilty of overdoing it in the gym and I get frustrated when my leg size increases as a result. Now I want to know which exercises to focus on, from expert fitness instructors. Every day’s a school day!
In addition, I reached a time in my life where I was raising awareness and sharing solutions to help others and to facilitate this, I created my book with the help of many experts in the lymphedema field. My book is called ‘How to Live Better with Lymphoedema’.
Where do you want to be with your lymphedema management in 3 years?
Quite simply, through self-discipline I will continue with my daily self-management routine with the objective of maintaining my leg size. If, through new learnings about specific diet and exercise, the size of my leg reduces, then I will, of course, incorporate these into my regime. From experience, I will try anything and if it works stick with it.
I measure the circumference of my leg in four places on the first day of every month, to keep track of fluctuation: ankle, calf, knee and mid-thigh. I also record my weight and measure my waist too. I keep this information and refer back to it to identify reasons for the increase or decrease, which can include seasonal changes in weather of course.
This gives me the control and I can take immediate action to reduce the limb with Velcro compression wraps or self-bandaging, for example.
How do you think it’s different for men with lymphedema versus women?
My goodness, that’s a tough one to answer as I can only give you my perspective, obviously. I know from talking with many people of both sexes with lymphedema, that we share many of the challenges, including clothes, wearing compression, wishing to hide the swelling away and avoid drawing attention to the lymphedema. This also includes the impact on mental wellbeing, as there can be some tough times for many.
I think this may be a broad-brush statement but based on my experience and that of those I’ve spoken to over the years, men don’t talk about their health issues with others and that, I believe, is the main difference between men and women, women talk, men don’t!
A couple of examples I can provide to support my statement are as follows. In 2022, I attended a patient conference run by one of the largest lymphedema charities in the UK. In an audience of around 50 people, I was the only man with lymphedema. This isn’t unusual, as I attended the same conference in 2015 and in an audience of over 100 people, I was one of four men attending with the condition.
One of my objectives is to get more men talking about their lymphedema journeys and through my company Lymphoedema United, I have a ‘Meet the Members’ section where people can share their stories and add their email or social media addresses to unite with others.
I also organize an annual charity golf and spa day to raise money for the Lymphedema Research Fund. In June 2022, men and women travelled from all over England to play golf with others with lymphedema but also to talk openly with them about their challenges and solutions. It was wonderful to see, and many friendships have been made for life! The golf day takes place in June, so if you play golf and have lymphedema, come and join us in central England.
I’ve seen some men with lymphedema abdicate their self-care to their wives or female caregivers, what would be your message to these men?
I do appreciate that it can be tough to do all the elements of self-management yourself. I am fortunate that, age 52 currently, I am fit enough to do most things. However, as I get older, donning and doffing a Class 4S stocking is becoming more of an effort.
It takes a brave and strong person to ask for help and I believe this is much better than struggling alone, if you don’t have to. Lymphedema can be life changing for both the patient and the immediate family. A supportive partner is very much appreciated.
Conversely, I recognize that I must look after myself as much as I can and only ask for help when I really need it. That’s probably because I’m a stubborn old so and so!
Every person is an individual with varying levels of swelling and ability to self-manage their condition. All I can say is that I respect any person and their partner/carer who is dealing with the daily challenges of living with lymphedema.
Keeping Track of your Lymphedema
One strategy that you can use to help manage your lymphedema, is to track your lymphedema measurements, your self care and your diet. This way, you can see what’s working, what’s not and determine if you have food triggers that aggravate your lymphedema. There is a tool to help you do this, called the Lymphedema Journal for Women and Lymphedema Log Book for Men.
What are your top 3 tips for managing lymphedema in your legs?
- Wear properly fitted compression garments, daily.
- Elevate your legs when you can, especially if you are desk-based or spend a lot of time driving for example.
- Keep your lymph pumping through regular movement and gentle exercise.
To read more posts like this, about the personal experience of living with lymphedema, read
To read more about products to help manage lymphedema, check out Products for Lymphedema.
