Lymphoedema
Resource hub covering recognition, diagnosis, measurement, compression, movement, and treatment.
This site distinguishes lived experience from medical documentation.Deze site onderscheidt geleefde ervaring van medische documentatie.
Open what you need. Leave the rest closed.Open wat je nodig hebt. Laat de rest dicht.
1 What It Is A plain explanation of lymphoedema and why it happens.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
In my own words
My lymphatic system no longer moves fluid efficiently through my right leg. Fluid can accumulate in the tissues, causing swelling, heaviness, pressure and changes in how the limb feels and functions. Because pelvic lymph nodes were removed during cancer surgery, the lymphatic system has less capacity than it once had.
A note on this explanation
This is a patient description, not medical instruction. The final wording here should be reviewed by a qualified lymphoedema professional before it is treated as clinical guidance.
2 Presentation What lymphoedema can look and feel like.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What it looks and feels like
Swelling of the right ankle, foot and lower leg. Loss of the normal ankle outline. Pitting, where a thumb leaves a visible indentation. Heaviness. Warmth. Pressure or throbbing. Shoe fit changing. Compression marks. Symptoms extending toward the knee. After severe flares, pins and needles or areas of altered sensation.
What makes it worse
Long periods of sitting and travel can make management more difficult.
3 Recognition Early signs worth paying attention to.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What happened
The earliest signs I currently place in 2023. I noticed swelling and changes in shoe fit at work. Initially I was able to hide or minimize it. The first major event that made it impossible to dismiss happened in January 2024, when my right shoe would no longer fit normally and the ankle had visibly changed shape.
4 Diagnosis How lymphoedema is typically diagnosed and ruled in or out.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What happened
In January 2024 my GP examined the swelling and urgently referred me to hospital because thrombosis needed to be excluded. An ultrasound did not show thrombosis. The hospital assessment then pointed toward lymphoedema.
What I know now
That distinction mattered enormously: I had gone in afraid of an acute clot and came out facing a chronic condition that would require ongoing management.
5 Measurements Tracking limb measurements over time and why it matters.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What I track
Yes. I track measurements at the foot, ankle, calf, knee and thigh, together with photographs and symptoms.
What is published here, and why
For the public website I publish trends rather than every raw number initially — for example, "ankle circumference increased during a flare," "shoe fit changed," "swelling became visibly asymmetric," "measurements improved or worsened following treatment or travel." A detailed measurement table could later live in an evidence/data section if there is a clear reason for publishing it.
6 Compression Compression garments: fitting, wearing, and living with them.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What happened
Compression is a central part of management. I have used compression stockings and, particularly around travel or more significant swelling, compression wrapping/bandaging.
What I wish someone had told me
It is effective management, but it is also labour: putting it on, getting the fit right, tolerating pressure, monitoring the skin and planning clothing and travel around it.
7 Movement Exercise and movement as part of management.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What happened
Movement is important to me and forms part of how I manage the condition. Walking has been particularly important throughout my recovery history. I also monitor activity because there is a difference between helpful movement and simply forcing a swollen leg through another workday.
A note on this section
Any exercise recommendations here are my experience rather than universal medical advice.
8 Treatment Manual lymphatic drainage and other conservative treatments.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What my record includes
Compression. Manual lymphatic drainage / lymphatic treatment. Bandaging or wrapping. Movement. Elevation. Photographic tracking. Circumference tracking. Self-management around travel and prolonged sitting.
What I know now
Treatment is management rather than a claim of cure.
9 Tests Imaging and diagnostic tests along the way.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What happened
The most important acute test in the record is the January 2024 investigation to exclude thrombosis. An ultrasound did not show a blood clot.
What's not yet published
Further specialist investigations should only be listed when the medical reports are confirmed and in hand.
10 Surgery Surgical options and what they involve.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What happened
I have not had lymphoedema-related surgery. If surgical options are being considered or discussed at any point, that stays private until a specialist consultation and treatment plan are confirmed.
11 Preparation Preparing for specialist appointments and procedures.
This chapter references clinical imagery. Nothing is shown unless you choose to open it.Dit hoofdstuk verwijst naar klinisch beeldmateriaal. Er wordt niets getoond, tenzij je het zelf opent.
What happened
Travel requires more planning than it once did. I think about compression, sitting time, movement, swelling, shoe choice, the ability to elevate the leg and what happens after the flight.
What I know now
A long journey does not end when the plane lands. My leg can continue responding after I arrive.