Does anyone else have swelling only in thighs?

[ulverin]

I happen to have a weird (?) case of lymphedema. My leg is completely ok below the knee, only 1 cm bigger than the other which I guess is normal for healthy people too. But swelling in thigh is quite severe. Of course it's better that it's not the whole leg, but it's hard to find compression that sits right. I'm interested If someone else has the same kind. I'm also wondering If I could only use shorts for this. It would be awesome to barefoot every once in a while.

[skeeple]

Hi Ulverin,

My swelling is mostly in my thighs and possibly my buttock and public area. I'm so lucky it's fairly mild but it has been getting worse recently and I quite often sit with my legs splayed out as I find the bulkiness in my groin so annoying.

I've seen some capri pants by Haddenham and I think they would be ideal. I'm waiting to see if my lymphoedema nurse can get them as my GP couldn't get them on prescription. If you Google "Haddenham veni capri shorts" you will see them. I really want to be able to go barefoot too. I'm going to try some compression cycling shorts today. They're not for lymphoedema and they might not be long enough but I need to see if they help at all. As I've been progressively more troubled over the past week.

I hope you find something that helps!

Sx

[ulverin in reply to skeeple]

Hi! Have you already seen your nurse? I'm going to look up those shorts you suggested.

Bare feet or shorter leggings would increase clothing choices tremendously! I also have nice feeling soft socks and am looking forward to using them.

It's good your taking action right away now that you feel some worsening.

[Angelil]

Hi there, mine is in both thighs and groin area but not lower leg. They told me it was unusual too but I personally think it's because my lymph system is all good apart from the groin where my nodes were removed from so my body can move the lymph back up but builds up when it gets to groin (could be talking nonsense though!)

I've bought sports compression leggings and hold you in underware but found the compression wasn't strong enough. I've also cut the feet off my compression tights which are fine as long as I'm not in my feet all day (this wasn't a recommendation, I just did it as full feet for summer was driving me mad!)

I've just been measured up for some made to measure cycling shorts which I should receive shortly so will let you know how I get on but I'm hoping they will be much better. The nurse was concerned in case the fluid built up in my lower leg but I'm hoping that as I've not had problems yet, I won't with the shorts (we've left the measurement nearest the knee a little looser and also requested seamless to help with this too).

Do you not go to a lymphoedema clinic for your compression rather than the GP? The nurses I see are really helpful and I've not had a problem with ordering as many garments as I need on prescription (I'm exempt from charges due to cancer last year)?

Hope this helps! I'll let you know how the shorts go!

[ulverin in reply to Angelil]

For me, my lymph nodes were not removed from groin, but only from pelvic area. I had scans to determine where and how severe the lymphoedema is and doctors were surprised to see that my groin lymph nodes weren't active either! They had shut down at some point, maybe due to infection and poor circulation. So I think you might well be right about the groin node thing. My lower leg used to have a noticable varicose vein from pregnancy nine years ago and that has actually almost disappeared when I've used compression daily. So my lower leg has even gotten circulation and flow.

It took for some reason over a year to get there, but am now seeing a physiotherapist in my hospital, who knows about lymph stuff, deals with compression clothing etc. He said he has patients like me and the shorts usually do it in that situation. I'm still using full foot now but we'll see about the next pair. I don't know why they didn't make me see him as soon as I was diagnosed, everything has been a struggle with GP and completely wrong directions for treatment. If I hadn't been active myself to find out about things, I could still be using a knee-lenght (!) non-custom made compression sock, which probably makes things rather worse than better in my case!

Good luck with your shorts, I hope it works out for you and am looking forward to hearing how it went!

[Angelil in reply to ulverin]

Hi Ulverin, just thought I would update you about the shorts. I've had them nearly a week and I'm really happy with them. So far I haven't had any problems with the lower leg and have seen an improvement in my stomach too. I have been doubling up shorts and tights together when I go for a walk so have seen some improvement in my thighs too. It's nice to be able to have the choice of wearing a knee length dress with my lower legs and feet out (I just need some sunny weather now!) I would definitely recommend them! 😄

[Jbrooks18]

Hi. I too just have lymphoedema in my thighs. Right leg worse than left. Obviously not that unusual then!

I wear tights but would love to find some leggings or below knee Capri length shorts. If you can recommend a make I'd be very grateful! I do have some leggings from Pebble uk website. They are by Solidea micro massaging anti cellulite leggings but they are low compression. Fairly expensive.

Grateful for any suggestions.