Flossie

[Roloshebamartha]

I have primary lymphodema in both legs. No investigation or diagnosis in other areas. Is it possible/likely to have the same in arms and abdomen? My fingers swell a lot and my abdomen feels bloated all the time. I am having a Colonoscopy and Gastroscopy soon for various gut problems but was wondering if lymphodaema can contribute/exacerbate those problems? And what might be any implications in the investigative procedure or worse any surgery that might be necessary? Thanks

[Stargazer1971]

I have primary lymphoedema in both legs too. I am finding the older I get the more it seems to be spreading. I now appear to have it in my abdomen, my fingers can swell especially when hot and over the last few years I have started getting swelling in my face, mostly eyelids and under eyes. I had a hysterectomy over 20 years ago which I believe is what triggered it in my abdomen. As for my face that seemed to start with having to wear facemasks during covid and has never gone away.

[Roloshebamartha in reply to Stargazer1971]

Thank you, you have reminded me that my swelling first really appeared in my second child’s pregnancy (though the fourth as I had two miscarriages) and never went away. GP said it was my age and medication makes it worse, not that I was on any medication…?? basically he didn’t know and I had to put up with it. I have been told my puffy eyes might be lymph problems, I had put them down to aging…my spreading abdomen too….but internal pain and discomfort now. Also lack of activity makes it all worse, I have recently torn a knee meniscus so walking and swimming which help a lot had to stop and now building back in. All the best

[AnneBury]

I have primary lymphoedema in both legs (below knee). I was suspicious about my hands and decided to pay for private scans. Ideally, I wanted a picture of my Lymphatic system all over.Turns out the lymphatics in both hands are rubbish. Hardly any lymph vessels and some of those that are there are wonky eg the lymph runs in the wrong direction - to the tip of one finger, as opposed to away from the tip.

I am not classed as having lymphoedema in my hands but as at risk of lymphoedema. I have some compression gloves to wear when I get puffiness.

I never did find out about the rest of my body. To be honest I didn't expect my hands to have faulty lymphatics - even the person doing the scans was surprised. What appears to have happened is that, in both hands, a lymph vessel has attached to a blood vessel ( in at least one place) and that is stopping lymphoedema developing (well, so far). It looks like that, in the womb, my body did the equivalent of an LVA operation as I developed.

I have compression gloves to wear when my hands (fingers really) go puffy. This is usually when it is hot and also when my hands are by my side for any period of time.

[Roloshebamartha in reply to AnneBury]

Thank you. I had to look up an LVA operation, how interesting that they could see the same thing was there naturally as it were. I find exactly the same walking with hands by my side, I think I need to get my wedding ring cut off… I hadn’t thought about compression gloves, thank you, I will look them up - I try to walk with my hands up on my shoulders when it’s bad, I look strange and it’s not straightforward walking the dog! Best wishes

[AnneBury in reply to Roloshebamartha]

I go line dancing and have to dance holding my hands a bit above my middle. When it's warm I have to wear my hand compression. I have also stopped wearing my engagement and eternity ring while dancing (but just about manage keeping my wedding ring on) Best wishes

[Roloshebamartha in reply to AnneBury]

How great line dancing! Exercise is vital. Hoping to get back in the pool when I know my knee can get me up the steps out of it!! I am researching compression gloves, thank you again for the pointer. Best wishes

[MabelCuthbert in reply to Roloshebamartha]

I find wearing a rucksack with wrist straps helps me keep my hands raised… and you could perhaps clip the dog’s lead onto it to free up your hands?

[Roloshebamartha in reply to MabelCuthbert]

Thank you very much. I have just looked these up, I had no idea such wrist straps existed on rucksacks, a great idea and maybe the dog lead too once the heel training is well in place. I am very thankful for this forum!

[On_porter]

Sorry to hear this. Yes it's possible. My lymphoedema started in 1 hand and 20 years later there isn't a part of my body without lymphoedema / fluid. The hardest one to pinpoint is inside the stomach as it won't always present as lymphoedema but some sort of other inflammation or gastro issue. Also frustrating about the stomach is the treatment if they do find something that doesn't look good. In terms of whether the investigations implications, I've had quite a lot over the years (endoscopy for example and lung surgery) and things don't seem to have got worse as a result of this but everyone is different.

[Roloshebamartha in reply to On_porter]

Thank you. That is very helpful about it presenting in the stomach as a gastric issue, that was my fear which I hope the doctor will at least consider. And I am glad your procedures have not made things worse, it’s very encouraging too going forward, thank you. All the best