I’ve never been backwards in sharing my personal experiences with lymphoedema and lipoedema, but realised the other day that they’re not all in the one spot. So here it is, my journey from day one of swelling to now. At this point it spans almost 34 years.
I was 24, happily pregnant, and had developed swelling in both feet and varicose veins in both legs towards the end of my first pregnancy. He was a pretty big baby and my doctors weren’t concerned at all when the swelling didn’t resolve quickly after delivery. Leg swelling isn’t uncommon during pregnancy and because nobody was concerned, I wasn’t either.
The swelling did go away, but re-emerged during my second and third pregnancies. Three little boys in just under 4 years meant that I was a busy mum who didn’t really have time to worry about these legs of mine!
After my third son was born, I began to have periods of time – usually in the summer – where my feet and lower legs would swell so noticeably that people would comment and ask what was going on. I usually just brushed it off, but it became a nagging worry in the back of my mind in the busyness of life until, during the Australian summer of 2005, my husband and I decided that we would move our family to live in Finland for an enticing career position that had been offered to him. I was 40. It was both scary and exciting to be moving to a foreign country with three teenagers, and Glenn and I travelled to Helsinki for a “look-see” visit for a week to make sure that we really wanted to go ahead with this big move.
Flying from Sydney to Helsinki involves two long-haul, back to back flights totaling around 25 hours. Within hours of arriving, we got stuck straight into looking at houses our little family could call home and in the middle of looking through one of these houses I thought my right foot was going to explode out of my boot – I took the boot off because it was so painful but couldn’t get it back on again because it had become so enormous. I had to hop all the way out to the car in the snow carrying my boot!
My foot remained very swollen and painful for the duration of the week we were in Finland, and I needed to buy a bigger pair of shoes to accommodate the swelling. This episode of swelling in Finland happened 16 years after the first sign of oedema during my first pregnancy. I still wasn’t particularly concerned, because (again) there were other things occupying my mind but those nagging thoughts were increasing.
We flew back to Australia (another two long-haul, back to back flights within a week), my right foot swelled even more noticeably, and my left foot had begun to swell too. I saw my local doctor who referred me to a lymphoedema clinic, where the specialist told me that I had lymphoedema, that it would never go away, that I would have to wear these (hauls a sample pair out of the drawer of his desk) compression garments every day for the rest of my life, that I would have to elevate my legs all the time (how do you do THAT and have a life???), and that’ll be $270 thanks very much see you later.
I remember feeling a bit dizzy and sick as I paid the bill, trying very hard to hold my tears inside my eyes at least till I got to the car.
By the time I was sitting at the wheel of the car, I had decided that the doctor was wrong. He was wrong, he doesn’t know me, and he doesn’t know what he’s talking about. There was no way I had lymphoedema. Not only that, I didn’t want lymphoedema. And I didn’t bloody well want to wear those compression garments either. So I didn’t.
I was too angry, too scared, and I felt so overwhelmed.
I just went ahead and did two more long-haul, back to back flights moving our little family and our cat Phoebe to the other side of the world with the weight of this diagnosis that I didn’t want hanging around my neck along with all the blessings and difficulties of doing such a thing with three teenager boys who really didn’t want to leave their friends and family to live in a foreign country.
Of course my legs swelled even more after all that flying with no compression and no idea of how to bring the swelling down. There was only a small reduction of swelling each night, but every day would bring more swelling and more pain and the whole situation go ahead of my capacity to manage it very quickly.
Knowing what I know now about stress, air travel, compression, diet, and the lymphatics, I’m surprised I wasn’t in a much worse state!
We lived in Finland for 4 years, and during that time I researched and tried every single thing that even MIGHT give me some relief. It was an intense, emotional, and exhaustive search, and I did it without any assistance from medical professionals. I tried diuretics, homeopathy, veganism, low sodium diet, the alkaline diet, a low fat diet, reiki, reflexology, juicing, acupuncture, crystal therapy, cryotherapy, far-infrared sauna, regular sauna, naturopathy, bariatric chamber therapy, dry skin brushing, rebounding, sequential compression pumps, multiple kinds of vitamin and herbal supplementation, bikram yoga, ayurvedic medicine, fasting, allergy testing, traditional Chinese medicine, chiropractic, hypnosis, osteopathic, and electromagnetic therapy. I spent more money than I could afford on supplements – yes, including the ones that are inappropriately touted even now – without any benefit whatsoever.
None of these things made any improvement in the swelling but they did fire up in me an unquenchable desire to learn. So I went ahead and started studying for my qualification in Nutritional Medicine. I took my time with it because I was searching for anything and everything that might even be remotely related to lymphoedema. Finding an answer to this puzzle was my mission.
While we were living in Finland I contracted my first bout of cellulitis. I had a blood blister on the little toe of my right foot (from jogging), which had burst. I washed it, and covered it with a bandaid. Just 10 hours after putting that bandaid on, I started experiencing chills and sweating, a headache, and I just knew there was something terribly wrong. I went home, took a couple of paracetamol and went to bed, and within 2 hours I started hallucinating and developed a deep and excruciating pain behind my right knee and then at the top of my leg.
The next morning, I noticed that I had dark coloured streaks under the skin near the top of my leg, and more of these streaks behind my knee – this is called lymphangitis. My husband took me to the doctor, who sent me immediately to the hospital where I was diagnosed with septicaemia. I had IV antibiotic therapy for three weeks, and then oral antibiotics for another eight weeks. Septicaemia is pretty serious.
That scared the crap out of me and that episode taught me that I needed to pay careful attention to any wounds on my feet and legs, and I also decided that I would wear some off the shelf compression garments, but I still had no idea about what having lymphoedema really meant. And a big part of me still didn’t want to believe that I had it. I felt so torn, and life moved on.
After 4 years in Finland, we moved back to Australia, and within a month I sought out a specialist in oedema. I was 44. Once and for all I decided that I would believe a specialist if he could show me a definitive diagnostic for this condition.
He was a nice man, but he needed to examine my legs and anybody who has lymphoedema or lipoedema will understand how tough that is. I hadn’t showed anybody my legs for a long time so I felt very vulnerable while he looked them over. He showed me the positive Stemmer’s sign, and told me that yes, I definitely have lymphoedema. Primary lymphoedema, stage two in my right leg, stage one in my left leg. My heart sank because with all the effort I’d gone to to prove that I didn’t have this condition, I knew what it meant to actually have it. I felt sick and dizzy.
Primary lymphoedema means that a person was born with abnormalities in the lymphatic system.
Secondary lymphoedema means that a person has abnormalities caused to their lymphatic system (such as surgery, cancer, lymph node removal, radiation treatment for cancer, pressure from increased fat tissue in the body (lipo-lymphoedema), or a blow to the body for example in a car accident).
Signs of lymphoedema include abnormal swelling, pain or a burning sensation as the pressure in the area increases, a feeling of heaviness or tightness, restriction in movement, recurring infections, thickening of the skin, and fibrosis (hardening) of the tissue beneath the skin.
Most frequently, people experience lymphoedema in a limb, however it is possible to experience lymphoedema in any part of the body where abnormality or injury to the lymphatic system has occurred.
In advanced cases, lymphorrhea can develop which is leaking of the lymphatic fluid through to the surface of the skin usually in the area that is swollen.
An even more heart-sinking moment happened just a few moments later when the doctor told me that I also have lipoedema … stage two. I’d never heard of lipoedema before but I had an inkling of what it meant – it was like a physical punch in the guts. (Lipoedema patients have varying responses to their diagnosis – anywhere from relief to have a name for their condition, to extreme overwhelm and confusion, and everything in between.)
Lipoedema is an adipose tissue disorder where the connective tissue in subcutaneous layers of fat develops abnormally. Areas of lipoedematous tissue are extremely painful in about 45% of cases and are nodular to touch.
Areas of the body typically impacted by lipoedema are arms, hips, buttocks, and thighs.
Lymphoedema is a common comorbidity, and some lipoedema specialists agree that lipoedema is on a lymphoedema spectrum.
While it’s ideal for people with lipoedema to avoid the accumulation of excess body fat, people with lipoedema are typically told to “eat less and exercise more” by many medical professionals. I have many colourful swear words about this outdated and ignorant advice.
I will never forget scrambling to get my clothes back on feeling so vulnerable, with my face burning, and tears stinging my eyes – I was worried that if one tear fell, that I wouldn’t be able to stop crying.
“Both Lymphoedema and Lipoedema are chronic, progressive, and debilitating conditions, which render the sufferer prone to life threatening infection, impaired mobility, misdiagnosis and medical ignorance, social isolation, discrimination, and unreasonable expense for management.”
~ Kimmi Katte
I remember leaving the doctor’s office just barely holding it together on the surface. I actually don’t remember anything the specialist said after he said that I have lipoedema. I felt so alone. I was in the midst of what I can only call a storm of panic and overwhelm as I hurried to pay the bill and rush back to the safety of the car again, this time with my fist clutching a prescription for compression garments and a referral to a vascular surgeon. My husband was in another country on business at the time and he happened to call as I was rushing through the shopping centre to get to the car park – as soon as I saw that it was him calling, I broke down and answered the phone. Sobbing. Loudly. In the middle of a shopping centre. People are walking past and I’m sure that they’re staring at me but I’ve got my hair pulled over my face in an effort to hide and I’m looking for a corner to snuggle into, I’m trying to speak, but unable to make intelligible words. My husband thought somebody must have died, and that’s how I felt – like part of me had died, because I finally knew in my heart that I had lymphoedema, and I also had another condition to try and understand.
I still get quite emotional when I think about how hard that day was, and yes I’m crying while I’m typing this out. It might sound weird having such an extreme response and I can’t help wondering if it’s because I ignored my feelings about it for so long.
That day marked the beginning of being diligent in wearing compression, seeking out a therapist for manual lymphatic drainage, and I did everything I was supposed to do.
I have to say I let the lipoedema diagnosis sit on the backburner in my mind for a while. I had no idea what to do with that word while I was dealing with the lymphoedema so I didn’t talk about it, and I didn’t think about it for a long time. Years in fact.
Oh, and remember that referral to the vascular surgeon? Welp, he who told me that the swelling was due to venous insufficiency … I was like WHAAATTT??? Wait, so I don’t have lymphoedema?? Nope he said, your swelling is caused by the venous insufficiency and I can fix that! WHAAATTT??? I was so so SO HAPPY!!
I hurriedly had the surgery, and I waited with not much patience for the swelling to resolve. Six weeks post surgery, still no reduction in swelling. He couldn’t explain it but told me to wait another six weeks to see the results I was looking for.
Nope. No bueno. How furious do you think I was now? How many swear words do you reckon I had over this? I can’t even begin to describe it.
And life continues to roll on.
It’s now been four years since returning from Finland and another career opportunity turned up for my husband – this time in Dubai. And because we’re adventurers at heart, we decided to do an expatriate stint in the United Arab Emirates for a couple of years. I was 48. It would mean a lot more flying as we took several trips back to Australia each year and of course the heat in that country is no joke – one thing that was painfully obvious was that flying, heat, and humidity were like fanning the flame of disease in my legs. I dutifully wore my compression, but didn’t know very much about techniques to manage the lymphoedema by myself and there was still that lipoedema diagnosis lurking on the backburner.
On one of my trips back to Dubai from Australia I experienced an episode of swelling that was the worst I’d ever experienced. I had to remove my shoes during the flight and couldn’t get them back on for disembarking so I walked through the airport to the taxi station in excruciating pain because the lymphatic fluid had gathered on the soles of my feet as well as all the way up to my thighs – it was like walking on crushed glass – and a bit embarrassing walking amongst all the beautiful travelers barefoot! The swelling didn’t resolve overnight, so I went to our doctor who referred me to a lymphoedema clinic in one of Dubai’s hospitals.
It turns out that I also had to go through another vein stripping procedure – the veins had grown back since the earlier procedure and the valves had grown back faulty … sigh. The doctor also ordered a lymphoscintigraphy. This is a nuclear medicine scan that shows regional lymphatic clearance in the body and can determine the extent of lymphatic dysfunction and rate of clearance. My lymphoscintigraphy report stated “torturous” lymphatics that took a long time to clear the dye. Another confirmation that yes, I have lymphoedema. Boo already!
After the surgery and the scan, I was prescribed what is still referred to as gold standard treatment for lymphoedema. Complete Decongestive Therapy (CDT).
CDT is a system of daily manual lymphatic drainage, combined with bandaging and specific exercises to help the body clear the build up of lymphatic fluid. This meant daily visits to the hospital for lymphatic drainage and thick bandaging. I was to stay wrapped in these bandages between visits for a period of 8 weeks.
So after many years of denying that I had lymphoedema, I decided that it would be smart to learn the basics of how to do manual lymphatic drainage and the bandaging for myself. So I asked the therapist to please teach me. And she did. Obviously this wasn’t going away any time soon, so it was time to accept it and try to make the best of a shit situation. Yes yes, I’m a slow learner!
It wasn’t fun being heavily bandaged in 55C (131F) heat, but I achieved an amazing reduction over this time, and was measured for new compression garments (by this time my old ones were five and a half years old) as well as night time garments, and since then I’ve been especially diligent with good quality compression and appropriate exercise.
Next was the food.
While I was living in Dubai I decided to finish that Nutritional Medicine qualification. Every single class and assignment had me laser focused on anything that might help the lymphatics and connective tissue – I mean it, I literally spent hours outside of lectures and assignments running down elaborate rabbit holes looking for ANYTHING that looked like it might remotely help.
Even now, if something that might be helpful for legs comes up on my periphery I will hunt that thing down relentlessly like the most badass predator you can imagine! The amount of money I’ve spent on snake oil is absolutely obscene – I wanted to stop wasting money on these legs and start getting smart about it.
I had been playing around with many different diets with no success, but found some improvement with a carb cycling protocol. It was 6 days a week keto, then 1 day a week on a massive carb up. I found that my swelling would be much easier to manage while I was in ketosis, but would markedly worsen over the 48 hours post carb ups … so I dropped the carb ups and remained in ketosis to see what kind of traction that would give me.
And whoa, that was a good choice! It gave me some traction! Managing my swelling became so easy when I was in ketosis, and I knew I was onto something when my energy soared, my circulation improved, my lipoedema regressed, and pain dramatically reduced. I decided to remain in ketosis for 6 months as a decent experiment to see what else I could achieve.
I began to notice that I wasn’t swelling as much as I used to in humid weather, and all of the swelling that was accumulating during the course of the day was resolving overnight. The pockets of fat just below my knees had also reduced markedly and all the fibrotic areas had softened.
I also had another lymphoscintigraphy run a couple years ago when I was one of the participants in a global drug trial for a medication that sadly proved to be unhelpful for lymphoedema. I was happy to be a guinea pig for the drug, but much happier to find that my lymphoedema had regressed to the point where it barely registered for my left leg and was vastly improved in my right leg. The lymphoscintigraphy was run prior to drug / placebo administration and I was absolutely thrilled with those results! My hard work with compression, exercise, and food was paying off big time!
I had another scan around the same time – an indocyanine green (ICG) scan. It showed that I was likely born with some lymphatic vessels missing in my legs. This is called primary lymphoedema.
I’ve seen a lot of different versions of the ketogenic diet, but the way I decided to do it is the classic version – high fat, adequate protein, very low carb. Just real unprocessed foods in great ratios.
Some people say that I’m ridiculously focused on food, lifestyle modifications, and nutrients … I would say that I’m ridiculously focused on feeling fabulous after feeling less than for so long. I’m passionate about these things because of what I’ve been through and because of the changes I’ve been able to produce with some relatively simple measures.
I still wear compression every day, and exercise is still part of my routine. I only eat foods that help my body feel great, and I don’t apologise for it.
I’m not cured, but my conditions have improved and that’s not what normally happens with lymphoedema nor with lipoedema. Even now, four years after changing to a ketogenic diet I’m still experiencing reductions.
So that’s my journey in relation to lymphoedema and lipoedema up to this point.
I’d love for you to also write out your own journey – it’s cathartic, and people need to know that lymphoedema and lipoedema affect a large percentage of people. I honestly believe that there are people in the world with these conditions who don’t even know they exist, largely because their doctors don’t know they exist.
Lymphoedema and Lipoedema are both medically recognised health conditions and if your doctor doesn’t know that, it might be time to change doctors, or provide them with some information. They can refer to ICD11 (International Classification of Diseases 11th Revision) where lymphoedema and lipoedema are listed.
Please share this article far and wide for increased awareness and information about lymphoedema and lipoedema!
If you would like nutritional support in the management of either of these conditions please contact me at email@example.com