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.

▶️https://www.prda.org.uk/lymphoedema-awareness-week/ You will also find a link Corinne's Story of living with PRD and lymphoedema.

As part of lymphoedema awareness week Hayley talks about her lymphoedema and what she wishes people understood about living with the condition. https://youtube.com/shorts/Zkn9ov918_U?feature=share

Dear all, Our friends at the British Lymphoedema Society have contacted us regarding an upcoming webinar that they are hosting as part of Lymphoedema Awareness Week 2025. The session is titled: Lymphoedema: Is it a risk after pelvic cancer treatment?

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.

Please click on the link for more information and to share your thoughts and ideas: https://patients-voice.cancerbrc.org/help-us-provide-better-support-for-managing-lymphoedema Thank you, The Ovacome Team

I have lymphoedema in both thighs, genitals, pelvic and abdomen and struggling with everything. compression wear helps with thighs but my nurse can’t find something that helps with the rest.

I actually think the tights may be making it worse than normal exercise leggings even though I am stage 2 lymphoedema. Does anyone have any suggestions for good leggings I can try? Thank you 🙏🏻

I wonder when people with Lymphoedema in one’s arm take antibiotics each time there are pink spots on their arm.

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.

Hello I have been diagnosed with cancer of the stomach and ovaries, nothing can be done but my legs have swollen from the feet to just above the knees and it'scalled lymphoedema so painfull and hard and if anyone can give any advice on getting relief from it then I would love to know please.

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.

I have posted the above in the lymphoedema site but not received any replies.

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).

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.

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.

Hi all, I have had lymphoedema for a while now, both limbs, doctors always unhelpful so try to avoid them where I can. Anyway woke up a week ago and middle toe was bright red with a “normal”-coloured band across the centre.