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Anybody else suffer from lymphodema in their legs (fluid)

(5 Posts)
triplets Thu 25-May-17 07:52:25

I have been diagnosed with mild to moderate lymphedema in my left leg, the fluid is in the whole leg. I have recently finished treatment for stage 1 ovarian cancer and it could have been caused by the surgery for that or it could have just happened anyway. I had my first three monthly check up on Tues for the cancer and told the surgeon. He now is sending me for a scan incase "we missed something". I now have to pay privately for lymphatic massage drainage to help manage it and also wear a strong support stocking on that leg for the rest of my life. They are very hard to get on, and my tummy is still sore from the hysterectomy. I love being barefoot, if not I live in flip flops, it is going to restrict my life so much and I am feeling so depressed about it on top of the cancer. Just wondering if anyone else has experience of this to give me hope. Thank you. x

Optimouse Fri 26-May-17 13:13:39

Hi, I have primary lymphedema which means I was born with it rather than as a result of cancer treatment. It affects my right foot mainly which is always swollen (my SD calls it my club foot!).
Most if the time it's not too bad but sometimes it's very swollen and feels like the skin could just burst open.
I'm under the hospice for it as that's where the lymphedema nurses are based due to it often being a side effect or cancer treatment and see them every few months.
I'm 43 and sometimes it makes me feel like a old woman. I can't wear strappy heels our sandals as they look awful and dig in.
I try and ignore the fact that one day I'll have a fit that looks like an elephant fit if I'm not lucky. It's all a bit shit really.
The nurse taught me to do the lymphatic drainage, is it better to get someone else to do it??

Optimouse Fri 26-May-17 13:14:50

Foot not fit!

Mammabear31 Fri 26-May-17 13:26:23

Have a chat with your GP, there should be a lymphoedema clinic nearby you can be referred into. Our local clinic is within a hospital setting, but as the previous poster explained, they are usually within hospices. Have a google search of lymphoedema clinics in your area and you should be able to get some NHS help.

Our local clinic offers MLD and bandaging on the NHS. Waiting times are a bit long (around 5-6 months) but it's all free at the point of service.

triplets Fri 26-May-17 23:35:06

Hello ladies, thank you for your replies. Sorry you suffer too. I was referred to a NHS lymphedema clinic the nearest one to me being an hours drive away with no parking so a complete nightmare. They basically did an assessment, ordered me two stocking and said they will see me again in 3-6 months! It was my surgeon who recommended going for massage, but said unfortunately there is no help available on the NHS.

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