Lymphoma support group in Hertfordshire

[Ernie2608]

Hi I have lymphoedema in my whole left leg and the doctors I have seen believe it is a post thrombotic condition following a DVT I had in that leg in 2021. Otherwise I am very fit and healthy. I have always done a lot of sport and am trying my best to continue but it is hard as my leg feels very heavy and often I have pain/pins and neeedles/numbness/tightness.

Overall I am struggling to come to terms mentally with having this condition as well finding the physical side effects limit my lifestyle. I have had very little support from doctors and generally feel lost. I am scared about what the future holds for me and find it difficult to talk to family and friends as I feel like I am always moaning.

I have never even met anyone with lymphoedema and think it would help me to talk to someone in a similar position. I contacted LSN and there is no support group in my area or even relatively close by. I live in East Hertfordshire and would like to set one up. Even if it is just an unofficial social thing.

Is there anyone who lives in Hertfordshire or nearby who would be interested? It would be great if there were maybe a few of us.

[naominorthenellis]

Hi, why not join Lymphoedema United? it is completely free and it will give you access to lots of information and opportunity to meet and chat with others who have lymphoedema.

lymphoedemaunited.com

NNE

[Ernie2608 in reply to naominorthenellis]

Thank you yes I have joined and emailed them. Waiting for them to get back to me 👍

[Lymphet]

Hi Ernie

I’ve had lymphoedema for six years now and can totally relate to your feelings. Lymphoedema is in my right leg and trunk and I wear a 3F fitted compression garment. I’m a very positive individual and cope daily with all manner of related issues. I live near Bishops Stortford.

You are not isolated or alone, many of us have the same concerns and life dilemmas. Hope to see you soon.

[Ernie2608 in reply to Lymphet]

Thank you

I’ve just put my post up again as the title was spellchecked wrong!

Anyway thanks for replying.

If I get more interest I would like to set up a group. I have also contacted lymphodema united. Waiting to hear back

I’m Julie by the way.. Ernie is my black lab in my profile pic!

Best wishes

Julie

[Sue737400]

Hi Ernie,

I too had a blood clot and was told that I had post thrombotic syndrome. I pushed to get a proper diagnosis so that I could understand how I needed to manage my condition if indeed I did have Lymphoedema. It seems to be a condition that doctors really don’t understand, and I was right and they were not.

I manage my left leg by a combination of manual lymphatic drainage, compression and Lymphapress twice a day. My whole life has centred around activity and I had no idea what it would mean going forward however, once you work out a routine that suits you activity is definitely the best thing that you can do.

There is no doubt that we did not win the lottery by getting Lymphoedema. It is not fun. You must continue to speak up and get support for both the physical and the mental. You WILL adjust but it takes time.

I wish you all the best.

Regards

Sue

P.s I’m in Australia

[Morzine in reply to Sue737400]

oh god I sympathize totally….I’m a newbie too.

Ive had this blooming swollen right lower leg a few years and put it down t’ont heart ts let’s as dud doctor…thrn my new cardio said it’s lymphodema bilateral…what I thought? Looked it up saw photos and freaked about it….

I feel now after three months I am calmer cos the internet has certainly made me worry more…. I’m in France up a mountain and after my doc has sent me fir umpteen scan ultrasound and blood it’s all come down to the fact I’m stuck with this….however the scary initial stuff has left me…yes ive a uglier tree trunk of a leg than most, and yes I do look attpeoples legs a lot now I guess hoping to see I’m nit alone…but I now think if I manage it and try and not let it get worse it’s goung to be fine….I’ve tried lymphatic drainage and we measured the leg after ten weeks twice a week…the bad leg stayed the same the good leg got a bit thinner! Crazy!

I walk a fair bit but then when home shove my legs up on chair as they do feel uncomfortable,,,I have worked out if they get red, feel agravated best stick ona poofeeand rest. They can feel very uncomfortable I must say..

At end of day I’ve no solution…..all I can say is change your ways a bit keep feet up as much as poss, don’t wear tight things…and don’t let it freak you and take over your life, cos I did that and I now now it’s yes not nice, but life can go on

Chin up

Sue