Hi all had my first appointment yesterday with the lymphoedema nurse yesterday he was lovely.When I asked him if I had it he said yes I was gutted.As I had myself convinced that I didn't have it my left leg is a bit bigger than the right and it's right up to my tummy I thought it was just below my legs I have to get a pair of tights I have also got to have scan's done of my legs and tummy as I took this after I had a fall on holiday he has given me shower gel and cream it's called Hydromol he also told me to get Dettol and a Savlon cream in case of getting a cut or scratch to put this on right away he also showed me how to do the massage and exercise.Sorry for the long post

9 Replies

  • Hi, it is hard to come to terms with, I still sometimes manage to convince myself that I have "cured myself" and take off the stockings for a day and then have the harsh reality that night of swollen legs. Take some time to feel like this as I think it is important to acknowledge your feelings, but don't let them overwhelm you. Arm yourself with knowledge ( this forum is perfect) and keep battling.

  • When reading this I feel like it's me 😔 Feel for u xx

  • I think we all feel sadness & disappointment at first when faced with an unwanted diagnosis but it's important to try & think positive & learn to manage your leg in the best possible way using all the advice given - this way you are in charge & you feel more in control - it has worked well for me!

  • Hi Liz,so sorry you were given the bad news yesterday,but don't worry ,its not the end of the world.Lymphedema can be controlled and you can lead a perfectly good life if you look after it.Your nurse gave you Hydromol which is a moisturizer and can also be used as a soap if diluted in water,I find diluting it and putting the softened Hydromol on a warm wet flannel and moisturizing the dry skin.I is also very handy to have cream in case of cuts or grazes,savlon ,myself I have fucibet which I find very good ,but its on perscription from my gp as the ingredients in it don't suit everyone.Hope things work out for you and as I said ,dont worry ,life goes on with or without lymphedema,take care all the very best.

  • It's ok to feel bad about your diagnosis. I likened my own to going through the stages of grief. Shock, anger, denial, depression and acceptance. But then realised a few changes to my lifestyle and I can carry on as usual.

    It supposedly only takes 40 days to learn a new habit. 40 days of compression, skin care, self massage. It will feel less alien and more part of your new lifestyle. Small steps, keep positive and keep moving forward.

    Those days when you don't feel quite so positive, know you have the support of this group. They are friendly and willing to share.

  • Many thanks to you all for the word of encouragement it will take me a bit of time to get used to it but I will get there xx

  • I have just read a bit in one of the leaflets' not to have injections done in The lymphodema areas I have regular injections done on my hips because I have bursitis in both hips anyone know what happens now Thanks for reading xx

  • Hi Liz, you will just have to tell them hen you next go for them and see what they say.

  • Hi Liz, you are describing my feelings when I was first told about my arm lymphoedema. As others have posted after a bit it just becomes part of your life. The massage, the emollient, compression garment, risk of cellulitis, no trauma to arm etc. It's still not very well understood by GPs or the general public. But there is a Facebook Group (search for L-W-O) as well as this forum. Through it I saw a fantastic video of actress Kathy Bates who is a champion for the American Lyphoedema Society. Try googling for it as she is inspirational.

You may also like...