Does lymphedema always progress?: Hi, I’m new here. I... - LSN

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Does lymphedema always progress?

Lucy_w
Lucy_w

Hi,

I’m new here. I was recently diagnosed with a mild case of lymphedema in my left leg. I went to the doctor with a swollen ankle months ago and was initially dismissed but I knew something was wrong when the swelling did not go away after several months. I was referred for a second opinion (I got the impression that the GP had no idea about lymphedema) and that’s when lymphedema was diagnosed.

At the moment it is very mild and it is only in my ankle and lower leg. I was told by the doctor not to worry about it and that they have no reason to think that it will get any worse. They said the best thing to do is to exercise so I am swimming twice a week and doing Pilates (swimming seems to help quite a lot). They said that I can wear a support stocking but only if I want and when I can (!) and that I don’t need to be specially fitted and recommended buying some from M&S (which I’ve done and have started wearing).

I am concerned because even though I have been told not to worry about this I have read that lymphedema is always progressive. Looking back on photos from my childhood and growing up it is obvious when looking that my left leg (ankle and lower leg area only) has always been slightly bigger than the right. Should I be reassured by this? Grateful for any insight!

9 Replies
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Who diagnosed you, and have you been referred to a local lymphoedema clinic?

Lucy_w
Lucy_w
in reply to Lynora

I asked about being referred to a clinic but I was told it wasn’t necessary because it was so mild. I was seen at the department of general medicine at the royal infirmary in Edinburgh.

Lynora
Lynora
in reply to Lucy_w

I have PM’d you!

I found the same, doctors take some convincing to take it seriously. If I do much walking its painful and I need to take it easy the next day .

Its hard to buy compression stockings that do the job properly. I found some creased at the ankle leaving a lumpy look when I take them off. They are not graduated properly

Hi Lucy

My story sounds similar .. had a foot/ankle injury when I was 13- my foot and ankle swelled up but never went down. Then I whacked my other foot when I was about 26 and that swelled too. Neither are too bad, although they have their moments! If the weather is hot/humid they get worse. In winter it’s not so bad at all with just toe and end of my upper foot being puffy. I have garments from the lymphodema nurse at stoke mandeville hospital who I see twice a year. I only wear the garements occaisonally - when swollen (esp in hot weather) or flying etc. I know about manual lymph drainage but don’t do it (bad me)... however I’m 50 now and can say my lymphodema hasn’t worsened in 25-35 years. I do a bit of running these days, badly. I think that’s helped. I raise my feet on a pillow at night if they’re swollen, moisture the hard skin round the toe area and as I say, use garments from time to time to bring swelling down - or stop it from happening.

You might be the same as me.

Good luck!

Trish x

Hi Lucy, your story sounds very familiar to me too. My story began with a small swelling in my r h groin. GP couldn't really see it (though it was clear to me), and initially took the view that it was my imagination and if there was anything it was due to poor posture. I kept going back as it persisted and got worse, and eventually they sent me for a groin scan, mainly to reassure me. That showed nothing. Unfortunately it got worse, and then eventually about a year later my right lower leg was badly swollen. That (sensibly) triggered checks for DVT and vein problems, which again showed no problems.

Which is where things went wrong - the vascular consultant described it as lymphoedema but simply said that as there were no vascular problems she was discharging me. My GP then recommended me wearing the sort of half leg stocking appropriate for someone with varicose veins (which I clearly didn't have), seemed to know nothing about lymphoedema, and unfortunately at that point neither did I so I didn't know to challenge that. So - I spent a pointless and in fact harmful year wearing a stocking that was never going to help me, while my leg got worse and worse.

Eventually I asked to go back to the vascular clinic, where I saw a different and extremely helpful consultant who explained to me exactly what I did and didn't have, and that I needed a referral to a specialist lymphoedema clinic.

Cutting an even longer story short, at that point I fully researched what lymphoedema was using the LSN website, checked out what services are available in my area, went back to my GP having made a clear summary of my medical history showing where things had gone wrong, and insisted on the right referral.

From that point they have been very helpful, made the right referral, and I am now getting effective treatment, which in my case is a made-to-measure flat knit full length pressure garment.

So in answer to your question, in your shoes I would be finding out what specialist NHS lymphoedema exists in your area (you may find that there are different services for post cancer and all others, as where I live, or even none at all for lymphoedema not post cancer as in some areas). I would be reading everything I can about lymphoedema (I got a really useful book by Prof Mortimer from our local public library) - there's lots on the LSN website. Then I would be going back to my GP armed with the knowledge and asking for a referral now for specialist diagnosis and measuring, to give you the best chance of 'nipping it in the bud' and preventing it from progressing, rather than leaving it till treatment is essential.

Hope that helps, and best of luck. Deborah

Thank you both so much for sharing your experiences with me, it is so helpful to hear from others who also have this condition. I think i definitely need to push for a referral from my GP, I know that there is a lymphoedema clinic local to me. I am very lucky that currently my lymphoedema is very mild (you probably wouldn’t notice it unless it was pointed out) but I think that’s why I’m struggling to get the doctors I have seen to take it seriously. I really want to start dealing with this properly now so I can hopefully prevent it getting any worse, but something tells me the knee high stockings from M&S really aren’t going to make any difference! (Similar to your experience Deborah). So I’m keen to get some properly fitting garments and to have a point of contact to check in with now and then to make sure things aren’t getting worse.

Prompt treatment in the early stages is crucial. Clinics vary hugely in treatments, knowledge and ultimately results. If u have any reservations about treatment insist on seeing a specialist. Dont be fobbed off, its your body, the only one you have so it requires your best efforts

It can progress if not managed properly. I was diagnosed with a combination of primary and possible secondary at the age of 14 after 2 years of tests investigation's etc. Eventually in 86 I saw professor browse at St Thomas''s in London who at the time was the man to see. I was given a lymphograph dye directly into the lymph and xrays. This revealed poor development in the vessels etc. I do remember getting a good knock on the ankle once and it's always bruised to I believe that partly triggered mine. But yes a per previous replies you should see someone regularly who can measure assess and judge wether ithe is developing or getting worse. I have had to change job types as I can't stand or walk all day every day as within days it blow's up bigger and leaks fluid. I hope you have got sorted as I have only just joined on here.

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