Just been diagnosed with lymphedema, after treatment f... - LSN


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Just been diagnosed with lymphedema, after treatment for cancer of the cervix

alibali02 profile image

Hi, I have just been diagnosed with lymphedema, and I don't have much information on it, but I feel as though my world has come to an end.

I really hate feeling like this as I know that there is people who are worse off than myself. Can someone please give me some hope of a next to normal life. Xxx

19 Replies

Hi. Life goes on with Lymphoedema and you can meet lovely people with the same like I did on Facebook, and make some amazing new friends, that it can be a positive experience rather than the end! The new changes can be shared with people who understand, can offer advice to try go on to make the best of life, regardless of what is thrown at us. Join in and learn from our lymphie experiences, knowing we are around when you feel down to try to help understand and bring back that smile x

alibali02 profile image
alibali02 in reply to LymphieJD

Hi, thanks for your encouraging words, I have just been in a dark place, but after all the positive replies that I have received it has shown me a small glimpse of the light at the end of the tunnel.

I really do appreciate it. X

We all have different experiences and often different levels of care. What we do all have is a level of understanding and an ability to listen. Sometimes it is good just to write down how you feel what you want to know or just moan. There are many people here who can help offer advice and support. Remember you are not alone and have a vast level of knowledge about coping.

Thanks for your kind words, and I have taken your advice and I have started to write all my feelings good and bad. Thanks once again x

Look at it as something that is going to change a bit the style of the clothes/shoes you wear. I hope you agree with me that this is not a reason to be sad. I am sure people here will be able to help you in choosing the shops or webpages where you can find the right things to wear.

alibali02 profile image
alibali02 in reply to Rebec

Hi there, I want to thank you for your help, and you are right where fashion is concerned it is not the be all and end all. My biggest fear is not being able to play with my 4 year old grandson or continue to work, before I came on here, there didn't seem to be many positive stories. Thanks again x

i am very sorry to hear this.... 10 years ago at the age of 19 i was diagnosed with primary le in both lower limbs...i thoughtmy world would end. In a way i managed. Two years ago i fell and my right leg is much worse , i have to do many things to keep it under control and worse part : many things that i simply dont do anymore. two yearsago i said: if this is not getting better this is the end of it...

But.... It did not change, two years later and meanwhile i have found the nicest boy, bought a lovely house which i am renovating, started anon profitorganisation and changed to a very nice job!

LIFE CAN BE BRIGHT! The way to survive is to be flexible, dont think about what you cant do, think about what you still can do! That is your choice in every situation in life, and the mind is stronger then we think.... And who knows medicine goes fast, there might be a sollution coming but in the mean while i will not stop living, there are worse things that can happen. I know it takes time to agree with this , it took me some time to, but i am sure you are strong and you will too!

alibali02 profile image
alibali02 in reply to kharimata

Thank you so much, you really gave me hope, I am so afraid that I can't keep my job going or be to play with my grandson. But now after hearing your story it has now shown me that these things won't change. I will be forever grateful. X

I too have Lymphoedema after cervical cancer surgery but I wasn't told that it could even develop. I had never even heard of it so when I got the symptoms I just thought it was water retention. You need to stand your ground with doctors etc and make sure you get lots of support. I will be honest with you and say you often don't get treated the best or the fastest but put your foot down! If you get help right from the start then there is no reason why you can't be the same as before. There are a lot of us Lymphies out there! Recommend the LSN Lymphedema conference for meeting other sufferers xx

alibali02 profile image
alibali02 in reply to Rainbow36

Hi there, thanks for your advice, I also wasn't told that this, not that it would have made any difference to whether or not we had our treatment, due to the alternative. I still haven't seen a specialist or anything just yet. I am a bit freaked out by it all, I am hoping that when I do see someone, then this feeling will go away. I am so grateful for all your help. Xxxx

The Lymphoedema Support Network has a website with lots of information, just do a search for "Lymphoedema Support Network" and it will show up. Also there is a video clip on NHS Choices (under Lymphoedema) where someone (well, me, actually) talks about living with lymphoedema (since childhood). I always say it hasn't stopped me doing anything I want to do - but I have had a long time to get used to it (although I still very much dislike the fact it affects my choice of clothes - and footwear).

alibali02 profile image
alibali02 in reply to AnneBury

Thanks Anne, I have had a look at the website and it did make me feel better, I have to admit that I have been in a dark place since I was diagnosed, as of yet I still haven't seen a specialist or anything, so I am hoping that when I do, not only will my leg and foot improve but so will my mind and confidence. Thanks again x

AnneBury profile image
AnneBury in reply to alibali02

By coincidence a friend of mine got lymphoedema in a leg after treatment for skin cancer. We have had many holidays together over the years - and then it was just me with the lymphoedema. Anyway these days, when I go to stay, we are both busy in the mornings getting our compression stockings on. It took her a while to get used to it all but she has had excellent treatment and hardly has any swelling now.

Hi. I found that I had developed it after beating cancer. With good support from Lymphatic nurses and making myself wear the support stockings, and follow the advice given I am happy with my life. There are things that I nolonger do, but maybe age would have stopped me anyway. I have always swum so making that an important part of my life has not been hard. This Christmas I decided to get into cycling in the gym and I now do three to four sessions a week and am feeling far better than I have for years. planning ahead means I do a lot of things. If I am going out in the evening then I sit with my feet up and relax in the afternoon. I think it has changed my life but in a good way, but it has got easier over the years. I also now except this is me. You don't say how old you are? I also have a very.supportive family, but they do need reminding that I cannot do things. Try to stay positive.

alibali02 profile image
alibali02 in reply to Sundance

Many thanks for your kind words and support, I am 45 and I have a 4 year old grandson, and I am just afraid that I won't be able to do all the things that I do with him. But after reading your reply it has given me some more hope that it will be okay. Many thanks again, x

You are feeling very isolated right now, as everyone else has responded there is indeed a lot of help out there; you will doubtless end know far more than your GP and unless you live in an area with good lymphoedema services, then you will have to push for everything; don't be fobbed off! Initially the important thing is that you manage the condition as well as you possibly can. Find a really good MLD therapist. where are you based in the UK? I may be able to recommend a good therapist if you haven't yet found one. Sometimes just chatting to someone else with the condition helps put things into perspective. let me know if you would like to compare notes at any time. NNE

Hi alibali you are feeling just like I did in June 2007 when I was first diagnosed. Then I found LSN and got a huge amount of support from their magazine (Lymphline) and then they set up this forum which has a whole lot of lymphies. We all know stuff that can help/has worked for us and care and treatment are a bit of a postcode lottery but there is still lots you can do. That includes not getting fobbed off by GPs who know far less than you do about the condition. See the LSN website for lots of stuff.

Good luck

I so sympathise with you, I had endometrial cancer op 3 years ago on June 1st, did'nt know much about lymphoedema, ok until last August then diagnosed with cellulitis and lymphoedema ,have a really good clinic in Salisbury, leg now returned to normal size but have to wear a compression stocking every day, don't know how much my leg would swell if I didnt wear it, tried it for half a day here and there, not too bad in the winter but dread thinking about the summer, like dresses and shorts etc and already missed a beach holiday in Feb to Tenerife . I feel my life has changed, but have to say after reading how bad some people have it, I feel my condition is very slight, but hate and detest it, it doesn't make me feel any better when people say i am lucky to be ok from my cancer and could be dead!! but it doesn't help, Anyway lots of love to you ,big hugs, and I so relate to how you feel, do hope you have a good clinic you can attend, mind I get no sympathy there!! she is so pleased with her work that she has done on my leg, maybe a total cure will be found one day, keep in touch if you wish x

Bless you same happened to me took many years before the link was made, but I cope with this condition, it cost me my nursing career which was heartbreaking. However day to day I mange it on my own now, I wear compression knee length stockings, I also apply bandages if nessacary and I have an excellent GP who lets me have one month supply of antibiotics ready if I get an infection. The care given seems to vary so much which I found very frustrating, but there is a lot of support and advice here from fellow sufferers who understand.

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