Health CommitteeWritten evidence from Doreen (LTC 29)

Lymphoedema

Long Term Condition

I am 59 and suffered with lychin schrosis most of my adult life which unfortunately turned to cancer of the vulva three years ago. I had a radical surgery and had all my lymph glands in my groin removed. I now have secondary lymphoedema in my groin and legs. My cancer has gone but left with this awful condition which needs to be controlled every day.

When in hospital was given a sheet of paper with dos and don’ts about lymphoedema. These were very upsetting re: not have very hot bath, not to shave legs, not to get stung on leg due to contacting celuitis, not to have injections in legs etc.

My cancer nurse who was on the telephone at my beck and call was marvellous as was my Doctor, nothing was too much trouble for them both to help me in any way.

Had pain in groin and was told to telephone lymphoedema department in Dorchester Hospital. You leave a message and someone gets back to you straight away as this condition can be very serious if things go wrong. Had appointment and had legs measured and told had lymphoedema and stockings were ordered as did not want tights as very hard to put on and have arthritis coming in fingers. Was not impressed with the nurses manner, which was hard luck, wear your compression garments and what’s the matter with them, and you just have to get on with it. I go every 6 months and earlier if need be, have my legs measured to see if condition has got worse and every time I come away I feel really down and cry.

I feel like an old woman trussed up with all that I have to wear to keep the fluid moving.

At the lymphodema department there are hundreds of leaflets on breast care but a handful about the condition in your legs.

I am a member of lymphoedema support group (yearly subscription fee) and surf the net for any information and guidance for help for this condition.

My daughter was talking to her friend about my condition and she recommended a friend of hers who does massage for this condition. She has been my life saver, told me so many things to do to help my condition. I go to her privately every month for massage which is keeping it under control. I would go more frequently but lost my job after my operation and cannot afford to go more regularly as it costs £70 but I get a discount for £50. Before Christmas had a very stressful time with my Mother in Law and sadly she died. I had fluid build up all around my breasts which was so painful and needed to wear vest like compression to push fluid away. Apparently stress can cause this and Christine my massage lady was really worried about my condition as it can affect your breathing. I now wear bra to bed to help this condition.

I hate the summer as its harder to hide my compression garments and its very uncomfortable if I do not wear them and the fluid builds up causing more stress.

Lymphoedema is an awful condition and I would not wish it on my worst enemy.

May 2013