Lymphodema support group in Hertfordshire

[Ernie2608]

Hi I am posting my message again as just noticed my title was wrong! Spellcheck!!!

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.

[AnneBury]

If you joined the LSN (of not aleady a member) you could go to their AGM in September and meet lots of lymphoedema patients there. They also have at least one very experienced , lymphoedema professional, speaker.It might be worth joining some of the lymphoedema face book groups. It is though one of those that I met a local lymphoedema patient and we meet up for lunch, when we can ( North West London).

Separately my private MLD therapist asked me if I would meet for coffee with another patient of hers - newly diagnosed with lymphoedema and struggling to get her head round it. I was very happy to meet with her and she seemed reassured meeting someone with lymphoedema since childhood who has had a good, full life. It then turned out she probably didn't have lymphoedema but we had had a lovely meet up!

[apples4u]

Good morning! Unfortunately I live in Illinois,just outside of St. Louis, MO. You are correct, not much outside help for this disease. I have it in both legs,from feet up and believe it's moving into the trunk of my body. I've had surgery on both side of my groin and belief is that's where it started. I have 2 compression machines, and I've been wrapped 3 times by therapists and am now also getting a drainage massage every other week along with wearing the Velcro wraps when I'm not doing the other stuff. Still big legs. I went to a "lymph" Dr. Who measured with a machine on how much fluid I'm carrying in each leg, 30 lbs of fluid in EACH leg. But I believe it gone up since then. He said I'm doing all that can be done and walked out of the room. So it's hard and very depressing. I can't find clothes to fit my legs, shoes to fit my legs and I cry a lot. My family is sympathetic to a point, but with it difficult to walk, and it's extremely difficult, they don't seem to understand my inability to go out of the house much, especially my daughter. I am happy that congress passed the vote to have medicare pay for my wraps. They are so expensive and wear out quickly. Have you gotten in touch with a physical therapist through your hospital or a hospital and asked if they do lymphedema wraps? That's where I go. It does help. Your leg will go down but you wear this wrap for 2 days, they removed, measure, and rewrap for another 2 days and repeat. 2st time I wore for 4 weeks. Problem with going up the thigh is keeping the wrap up. Gravity plays a roll and as your leg goes down from swelling it's wants to fall.I don't know how much you have done. I also watch a lot of YouTube about it. Find out lots of things.

Keep moving forward. I am and yes it's hard but I'm doing it.

Stay in touch if you like, my email is:

[e-mail]

If nothing else to cry on my shoulder . I get it.

Take care

Kathy

[sleeviejeebies in reply to apples4u]

I'm so sorry to hear of your situation Kathy. I don't have any words of wisdom to offer, only sympathy. It's not very encouraging to hear that support is no better on your side of the pond. This community is pretty good for advice and a good moan, so I hope it helps! Emma

[Ernie2608 in reply to apples4u]

Thank you Kathy

Sending you a hug and total admiration for keeping going in spite of all the challenges xx

[Joanne08]

Queen Victoria Hospital, East Grinstead. Dr Teo. On the NHS .He have given me two lymphatic liposuction to reduce my leg.