Experiences with

Lymphoedema

- Lymphoedema is not rare, over 400,000 adults and children in the UK live with it.

I wondered if anyone else on the forum has breast lymphoedema and how this affects them. Best wishes 🤗

The focus of the oncology team has been on pain relief no mention of lymphoedema, despite my concerns! I'm wondering if anyone else has had a similar experience and how it was treat? Thank you

Hi, I am a relatively fit 55 year old with unilateral primary lower limb lymphoedema. Since diagnosis two years ago I have been advised to continue with the exercise I was doing prior to the car crash 💥 diagnosis.

Obviously, I have swelling because of the surgery but also because of the Lymphoedema so decided to get back to my ritual for Lymphoedema. My problem is when I have done MLD, applied cream and put my compressions on, my lower leg from ankle to about 6 inches up is incredibly itchy.

I got diagnosed after surgery earlier this year and the lymphoedema got much worse after radiotherapy. I have found the local lymphoedema service to be quite lacking. I have it in both thighs, pelvis and abdomen.

Having used my husband’s hair clippers on my lymphoedema leg for the last 3yrs I decided to treat myself to an electric razor! Just about to click “buy” when I glanced at a one star review from someone with lymphoedema who had damaged her skin and had to see the nurse.

At the time, me and my parents didn't know about lymphoedema. And I was great! Until at the age of 13 I joined a tennis class and my leg started swallowing. I was then diagnosed with lymphoedema. Now I am 19 and I'm wondering if lymphoedema can come just like that 5 years later.

A lymphoedema nurse I sometimes see told me about the HEAL trial that's currently underway in the US, so I thought I'd share the info.

My lymphoedema was triggered 12 years ago by a flea bite when I was on chemo and they do seem to be attracted to me. Due to my immune system being poor at that time it caused cellulitis. (I may have already had lymphoedema but it hadn't been diagnosed).

Hello all, just had a call from my Hospital informing me that my total knee replacement surgery is in 2 WEEKSAs I have Lymphoedema in both legs - left leg is worse. Surgery is on right knee.

Hi our secondary lymphoedema and rheumatism arthritis it's so painful I wear compression stockings and I swim and use vibration plate to help lymp flow lose weight I get paranoid about this chronic diseases I want to know if anyone else out there and how do you cope with lymphoedema and rheumatism arthritis

Does anyone sweat more from their lymphoedema limb while exercising? I run and exercise at the gym and have noticed my lymphie leg gets really sweaty compared to my other leg. I sweat all around, but my lymphie leg gets really sweaty these days.

Does anyone else get what is more than likely nerve pain in the feet? It comes and goes like a shooting pain but has been a lot more frequent recently and it's not nice. At the moment it's like above my little toe. But it moves around both feet - and usually it was in the middle towards the upper part

During Lymphoedema Awareness Week we will be posting numerous Lymphoedema Looks Like This posts. Please share as widely as you can, let's flood Facebook and other social media with lymphoedema lives. Thank you.

During Lymphoedema Awareness Week we will be posting numerous Lymphoedema Looks Like This posts. Please share as widely as you can, let's flood Facebook and other social media with lymphoedema lives. Thank you.

I have lower leg Lymphoedema and my left leg was always worst for swelling. Since my knee surgery, my right leg is swelling more.

Does anyone else’s medical professional tell you that lymphoedema isn’t painful? I have had 3 lymphoedema nurses now tell me it isn’t. For a start how would they know?! Also pain takes lots of different forms.

I have had left arm lympoedema for 16 years. Does anyone else have trouble finding bras and tops to fit. Tried new bra this arming. It seemed to push the fluid along and was able to get into smaller size top for a while. Then bra started to hurt under armpit so put old bra back on with said smaller top

I have lymphoedema in my left leg. Originally I was prescribed mediven thigh length compression garment. For many years I dropped out of the system. Last year I managed to get back and attend a clinic every six months.