Lymphoedema blues

Hi everyone

This is my first post, but have followed from time to time. Just wondering who else out there suffers from mild lymphoedema.

I was diagnosed with lymphoedema in April after complaining about heavy achy legs and pain in pubic area, especially later on in the day. I sometimes get mildly puffy ankles, around the knees, and an ugly bulgy bit on my thigh where my leg joins my body. Mostly on the left side. Sometimes my pubic area swells a bit too, or i just feel heavy and bloated and feel like I need to pee a lot more often.

I had to push for my consultant to take notice - it was not considered an issue. I was told it would go away. I was told to stop worrying about it. Thankfully my CNS agreed to refer me to the lymphoedema team.

The condition is not obvious to others unless i point it out, but it’s uncomfortable and impacts how I feel about myself. And I hate that it will never go away. Compression tights work and help with the achy heaviness, and after 6 weeks of wearing them my leg volume measured 500ml less. But they are not practical or comfortable in hot weather. I have never been a tights wearer, so I’ve had to change the style of clothes I wear. I have had some manual lymph drainage training, but as a single working mum I struggle to find the time to dedicate to make it effective.

None of this is life threatening. I can still live my life. I will get used to it with time. I will learn to accept it and be grateful I don’t have to put up with worse issues. But right now I am still fed up with it all.

I just wondered if anyone else can relate to this rant?


Hi Kate,

Do I relate to you! Yes every bit! 

I was diagnosed with lymphodoema almost by accident after going abroad last year on holiday. It was hot and my ankles swelled for most of the time I was away. I mentioned it to the team at my next visit, and so they referred me to the lymphodoema clinic. I had been warned that I was a "high risk" candidate for getting it, as I had a radical hysterectomy followed by chemo radiation. However, it is a drag to say the least, on top of everything else. I have had it now for about nine months and still have not really got used to it. I spend time in hot countries so I do find the tights and stockings very hot indeed. The stockings are better than the tights, and I was also told I could wear tight sports shorts. You can buy them online, but they are quite expensive, but are a bit more breathable and you can wear them with skirts and dresses. Do try to find time however hard, to do the lymphatic drainage as it seems to make a difference. If I havent done it for a while my legs get very lumpy, and looks as though I have bad cellulite.....not a good look. Hang on in there. It can be good to have a rant and to know you are not alone. Yes it might not be life threatening, but it's a constant reminder of what we have been through. Try different compression garments as it can make a difference to how you feel about yourself. 

Take care

Thanks so much, Rachel! Feels so nice to hear from someone who gets it :)

i know I'll chill out about it again soon. I am also just back from a holiday in Greece, and it was 40degr, so I didn't wear any tights. I hoped lounging around with my feet up and lots of swimming would be enough, but I am paying for it now. So achy and bloated. 

Will treat myself to some sporty shorts or maybe some Spanx-style pants this weekend and see if that helps. oh the glamour! :-D

Hi Kate :-)

So sorry to hear you are suffering with this, it must be grim :-( I seem to have got off very lightly which is lucky because I live in Greece all year round and I think I'd probably prefer to have my legs amputated than to live here in tights. You rant as much as you like sweetheart, we're all here to support each other and even though I can offer you nothing more than sympathy and hugs, I would like to think it makes you feel a little better to know that we care.


Be lucky :-)

Thanks! Sympathy and hugs are just what i need :)

Had the second of my three monthly checks today. No sign of cancer...!!  But my consultant wants to check on my kidneys. I transferred from a different hospital and last time my notes hadn't arrived. Now he has them and they say that part of my ureter was found in the lymph nodes and tissue sent to pathology.  Now wondering if lower back pain due to that...

Gah - another tiny niggle to fight... Roll on ultrasound!

is it common for surgeons not mention these things? I was told he'd snipped my bladder and had to sew it up, but not to worry...

Hi there

I haven't been diagnosed with lymphedema but did experience a slightly swollen pubic area a couple of time which got me concered.  It was only after lifting heavy stuff, but it was enough to get me worried!  I did some reading and found that rebounding is supposed to be amazing for lymphedema.  It involves bouncing on a mini trampoline.  It's also great exercise!  I know someone with Lymphedema who did this and it went down an inch in 4 days.  Maybe check with your doc first but it could be worth a try xxx

So after 3 months of relatively hassle free management of lymphoedema - compression tights most days, but not when too hot - I thought I was getting the hang of it all. Then all of a sudden it's flared up, burning aching left thigh and pubic area, numb achy legs. All of which triggers anxiety and suddenly I am In pain from head to toe. I am miserable again. :(

It's exactly a year since my surgery. Started feel on track again, relaxed, happy.  Now I am a needy tearful mess again.  

Wondering what I did to cause it to flare up ... Only thing unusual I have done is go away for a weekend to celebrate my anniversary, stay out late and drink a lot?? Could that have done it? Feels a bit mad to think so....

Anyone else get sudden flare ups like this?


Hi kate,

I too have the same issue as you... nobody else really notices it but im aware of it every really does get me down some days but for the most part I just deal with it. im naturally very slim so having a puffy cellulitey looking thigh and groin/abdo is a pain in the ass but I've learnt to control it in the main. It's probably the alcohol you've drunk that's irritated it unfortunately :( I see a private MLD therapist every month or so...she's excellent! And I also use K-tape to help drain the areas affected. Which area do you live in?? You've probably done lots of your own reading but I'm happy to share tips if you want to PM? 

Hugs...Sarah xx