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Lymphoedema Spreading to hip and back

Hi

I was diagnosed with lymphedema after the lymph nodes at my groin were removed due to melanoma. The whole of my leg was involved and I was given a full leg stocking.

However my hip was also swollen but everyone thought it was to do with my lymph nodes.

My CT scan has now come back to say lymph nodes at hip are fine and therefore it will be lymphedema. Since then it appears to have started to spread around my hip towards my back.

I was just wondering if anyone else has this and if they have any tips to help. I have raise it with the lymphedema clinic but they don’t seem to like “suggestions” made by other departments.

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Yes, it will be lymphoedema. Lymph nodes in the abdomen may well be overwhelmed - hence the swelling. You could ask your clinic to supply you with compression to the waist, which may means tights, but it would help to reduce/contain the lymphoedema now occurring in the buttocks/hips/lower back.

Could you find an independent Lymphoedema Therapist? MLD would be really helpful at this stage. There is a therapist in Liverpool. You can find her contact details via mlduk.org.uk/therapists/

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So sorry to hear about your melanoma, and subsequent lymphedema. I’ve been wearing thigh high stockings, but the swelling ( and/or weight gain!) has spread further into my upper outer thigh and butt, so I got a stocking with sort of a half pantyhose top which covers those areas and is held up by a Velcro band stretched across the hip or waist ( don’t know what this contraption is officially called). It’s not as warm as pantyhose and feels ok but on many days it gives me stomach aches because of the elastic band across my stomach. Is pantyhose even available for just one leg?? That too, would have a relatively tight elastic in the waist. But if tightness like that doesn’t bother you, these two options may both work for you. Good luck!

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