Experience of early/mild lymphoedema

Hi everyone,

Just wondering whether anyone would be able to share their experience of lymphoedema at the very start of having swelling please e.g. Was the swelling there all the time or did it come and go? At what point were you referred to a lymphoedema clinic? At what point was any treatment/management of lymphoedema started? Were you monitored for a period of time first with no action required? Did anyone have swelling that was being monitored for lymphoedema but it didn’t progress so no treatment or referral was required?

I discussed occasional swelling of my left leg, ankle and foot (mostly ankle and foot) and whether this could be lymphoedema with my consultant during my recent monitoring appointment and he’s made a note to check for progression at my next monitoring appointment in three months or I can phone my CNS if it gets worse before my next appointment.

This is my experience since surgery in February (radical hysterectomy with 11 pelvic lymph nodes removed):

Most of the time, the swelling is very mild where it wouldn’t be obvious to someone not looking for it and is only more clearly noticeable when comparing with my right ankle and foot, which aren’t swollen. Other than the first few weeks after surgery when both of my legs, ankles and feet were really swollen but likely due to not being able to be very active at that point, the swelling on my left side has flared up on two occasions - towards the end of March and in early May.

In March, the swelling gradually reduced over the course of a week to 10 days through elevating my leg and regular walking (as advised by my CNS) - the swelling completely went down so that my left and right side returned to looking exactly the same as each other. The week before this swelling, I’d had a bad week in terms of post surgery pain and fatigue so I hadn’t been very active so I put the swelling down to inactivity.

I was really disappointed when the swelling returned at the start of May as I was much more active by this point (back to dog walking, averaging 6km per day). Again, I elevated my leg and kept active. This time, the swelling has been much slower to gradually reduce - it remained at a mild swelling level for a month until yesterday when the left side finally started to look close to the same as the right side again.

I guess time will tell whether I’ve just experienced some unconnected occasional swelling, whether the swelling is due to lymphoedema and whether it will get any worse than this mild swelling which eventually reduces.

I’ve done some reading about lymphoedema on reputable websites so I have general information about it, but it would be good to also hear about other people’s experience of early/mild lymphoedema if possible please.

I’ll also post in the specific lymphoedema group, but thought there might be people here who could share their experience too.

Thanks and best wishes,

Louise