My name is Sarah and I suffer from a condition called Primary Lymphedema in my left leg. My lymphedema story doesn’t comprise of anything particularly exceptional or special; in fact, it’s probably a very similar story to others who suffer from this condition.
The intention of this blog isn’t to give insight into some rare form of this condition- it’s to raise awareness and add my personal experience to the small collection of information already on the internet (which is depressingly little!). Lymphedema is a very mistreated and misunderstood pathology (by doctors and the community at large), so by raising awareness of the condition we can help instigate more research, better treatments and ultimately a cure. I mean, we sent a man to the moon- how hard can it be to find a cure for Lymphedema?!
My lymphedema started in April 2013 when I was three months pregnant with my first child. I noticed some slight swelling in my left groin area and put it down to “normal pregnancy swelling.” However within a few weeks my whole leg had blown up and I knew something wasn’t right. After a few visits to the ER, blood tests, doctors assessments, ultrasound scans, the doctors were still unsure what was causing my swelling and basically told me it was just a weird thing that would go away after I gave birth. Unfortunately, it did not go away after giving birth and I was diagnosed with Primary Lymphedema a few months later.
The doctor who diagnosed me did the generic, “I’m really sorry but you have a fat leg for the rest of your life and you can’t do anything about it!” talk and sent me on my merry way. To be honest I really didn’t understand what Lymphedema was and was pretty inconsistent with wearing my compression stockings because I genuinely believed that it would just go away one day. After my second pregnancy in 2015, I realised that this was not to be the case and began to think more seriously about the condition.
I visited my doctor a few times over that period of 3 years and each time he gave me the same old speech of “nothing can be done except manage it as best you can”. I was absolutely gobsmacked that this was my final destination. Being as stubborn as I am, I absolutely refused to believe that there was nothing I could do to help my condition and decided that this guy didn’t know what he was talking about and continued on my own pursuit of knowledge.
I would spend hours searching the internet for answers, without finding anything really of interest. There was a lot of basic medical information about the condition of Lymphedema and what its symptoms were. I also found a small number of personal blogs of people who live with the condition that were interesting to read, but all still left me feeling pretty hopeless about finding a cure, solution or just something better than doing near to nothing about it!
Wearing compression garments every day, manual lymphatic draining massages at the physiotherapist, exercising, elevating my leg, bandaging, taking supplements to get rid of excess fluid… It has always been a constant daily struggle to keep the swelling under control.
August 2015 was the point in time that my Lymphedema worsened and I became really worried. Not just for the present moment and how I was feeling but looking forward into the future to when I’m 40, 50, 60, 70 years old… How is my leg going to be then if I can’t even control the swelling now?? It was (and still is!) a very worrying thought.
At this point, I was feeling very isolated, depressed and like the only person in the world who suffered this condition. It was (and is still) a daily obsession and worry for me. I decided to search on Instagram the hashtag #lymphedema to see what would come up. This was the moment things would change for me. I found a community of people, like me, who came from all the different corners of the world, who suffered from lymphedema! They were asking the same questions as me, searching for the same answers, sharing information, supporting each other. Connecting with these people gave me hope, finally! It showed me that Lymphedema doesn’t discriminate, it doesn’t care who you are or what you do, because it can happen to anyone.
I was particularly interested by one “Instagram friend” who had liposuction surgery to treat her Lymphedema. I never realised this was an option! Surgery?! I researched more into this area and discovered a whole bunch of interesting information about surgical procedures that can be performed to help treat (not cure) Lymphedema. (Interestingly, never once did my doctor mention to me that surgery could be an option to treat the lymphedema).
Bingo. Insert ‘lightbulb moment’ here!
On the 17th May 2016 in Paris, France, I had a Lymph Node Transfer. They removed 3-5 lymph nodes from my Axilla (‘non- sentinel’ nodes, aka: not essential to the drainage of the arm lymphatic vessels), and put them into my leg, just above my knee. Results from this surgery take at least one year to start being visible and the reason is simple- it takes time for the new lymphatic vessels to grow through the leg and reach the areas that need it.
I intend to blog about my transfer, giving you all as much information as I can about my journey in order to GIVE HOPE and show that something can be done to have a significant improvement in our lymphedema conditions.