Advice on stage 0 / 1 Lymphedema

[JanCan15]

I had radical hysterectomy 4 years ago. 25 lymph nodes where taken out of abdominal area. Have had leg/ feet swelling on and off. Nothing severe. But now it seems to affect my right thigh a bit. I’ve been wearing knee high compression for 3 1/2 years. Just wondering, will this get worse? I have gained about 8 lbs every year since surgery. Will I ever be able to wear sandles again? If I loose weight will it go away? According to my OT, I’m still stage 0-1. Any advice or tips would be appreciated. I feel like no one has this but me.

[Perido]

Hi JanCan,

You are far from the only one with lymphoedema but I well remember how lonely it felt when I first got my symptoms. My lymphoedema extends from my lower abdomen to my toes on my right side and started about 3 years ago, shortly after a radical hysterectomy and chemo-radiotherapy for cervical cancer. Unfortunately lymphoedema is a progressive condition and I've committed to doing everything as best I reasonably can to stop it getting worse. I've seen 3 or 4 lymphoedema therapists and been to several talks and there is a strong consensus that it is important to try and maintain a healthy body weight; losing weight doesn't make it go away but should help reduce the severity of the condition and will also help to prevent developing diabetes (I checked your back story)

I'm not sure what you mean by not being able to wear sandals; I don't have sandals I can wear at the moment because I haven't found any that will fit both feet comfortably. I find regular light/moderate exercise helps and have experimented to find activities I like doing that don't make my lymphoedema worse. Walking and pilates/yoga seem to help and I've heard that swimming and cycling are often beneficial for people with lymphoedema. You mention fear of cognitive decline in your back story; exercise should help with that.

I sense you are feeling a bit sad and down about your situation; I find it best to address challenges by making small and achievable changes - I'm sure things can improve for you.

I don't know which country you are in (I'm in the UK) but for further information you might be interested in a book entitled 'Let's Talk Lymphoedema':

amazon.co.uk/Lets-Talk-Lymp...

The authors are Dr Peter Mortimer who is a lymphoedema specialist and Gemma Levine who has upper limb lymphoedema but the book is relevant for lymphoedema in other parts of the body.

Keep well and safe.

[JanCan15 in reply to Perido]

Thank you so much for replying! And that’s awesome you checked my back story. It’s nice not to have to fill you in and that you’ve been through some of the same things I have. I have noticed that since I’ve been gaining, the Lymphedema gets worse. I am about 25 lbs over my healthy weight. So I am really trying to stay active and eat right. I am in the US and have a pretty good OT that helps me manage it. I just wonder with me being in my 40s, if this is something I can keep under control for the rest of my life. And I will definitely check out that book! Thank you again!

[lovesradio in reply to JanCan15]

There is also a great resource in the US with Kathy Bates as it's awesome advocate. It's the Lymphoedema Education and Research Network known as LERN. Hope you find some useful resources including how to do simple lymph drainage (sld) which is a useful tool in managing the lymphoedema.

[sharon1234 in reply to Perido]

I'm also like yourself I had a radical hysterectomy because of cervical cancer my left leg and my lower stomach and my left bottom cheek is badly affected by lymphedema but I found exercise makes it worse the more I'm on my feet the worse it gets I wear 2x class 3 stockings just to help it stopping getting bigger it is very big and very heavy and I fall a lot but I have hospital boots made to measure. At the moment my lymphedema is really getting me down

Sharon

[Perido in reply to sharon1234]

If my leg is feeling particularly uncomfortable then one of my favourite exercises is to lie on my back on the floor and perform a cycling motion with my legs. I think I did more gardening than was good for me yesterday; as soon as I got indoors I did the cycling thing and then just rested with with my legs vertical for about 5 minutes and I felt better afterwards. I also do workouts using my upper body which I think helps to get the lymph flowing - I treated myself to a personal trainer to teach me good technique. Disclaimer - please don't injure yourself if these type of exercises aren't suitable for you.

Your leg does sound very challenging to manage and my heart goes out to you. Have you looked into the possibility of surgical options? They are mostly only available privately (funding may be available for exceptional cases) but I can personally recommend Oxford Lymphoedema Practice if you are interested. I had a consultation to assess my suitability for surgery; unfortunately I'm not suitable for my preferred type of procedure but getting an assessment which included an ICG lymphography scan was worthwhile. The website is olp.surgery/

[sharon1234 in reply to Perido]

Thank you for your reply but I've already looked into it and it's £36,000 for lymph node transplant and I just don't have the money or the confidence to do fundraising but thank you kindly for your reply

Sharon

[Perido in reply to sharon1234]

I know of someone who had a very large lymphoedema leg and he got funded for liposuction by the NHS. He had good support from his doctors/GP who supported an application for NHS funding via his local Clinical Commissioning Group (CCG). I don't have any experience or knowledge about this type of funding; probably challenging to get but not impossible. When I asked about funding I was informed that it would depend if I had grounds for being an exceptional case which I don't think I am. As it turned out I am not suitable for LVA or LNT and not bad enough to warrant liposuction (the latter should only be performed by a lymphoedema specialist surgeon).

[sharon1234 in reply to Perido]

LVA? LNT? I did know what the meant but I have forgotten my memory terrible

X

[Perido in reply to sharon1234]

Sorry, just dropping in abbreviations like that

LVA is lymphovenous anastomosis

LNT is lymphnode transfer (or more accurately VLNT which is vascularised lymphnode transfer)

The procedures are explained very clearly on the Oxford Lymphoedema Practice website: olp.surgery/understanding-l...

Best wishes

[onelegbigger]

Hello JanCan I had a radical hysterectomy 2 1/2 years ago and my leg started to swell when I went back to work-I sit at a desk-

I wear Birkenstocks (Arizona) because I can adjust the straps. They have some great colours. We are all having to manage a lifelong condition and weight can be a problem because fluid weighs a lot. I went onto a Boditrax machine at the gym and my fat leg was 3 kgs heavier than my good leg.

I agree with the points raised by Perido and as soon as the gym reopens I will be going to Pilates classes again.

I also suffer with persistent UTI's so water retention is an additional problem. It's horrible when you manage to get to a good place and you are back to square 1 in the blink of an eye.

Just keep climbing that hill 🙄🙄

[Perido in reply to onelegbigger]

Hi onelegbigger

Going off the subject of lymphoedema but your mention of UTIs resonates with me. I've been having recurrent UTIs ever since my radical hysterectomy; the surgery caused a lot of nerve damage to my bladder and I now suffer from urinary retention which I manage with intermittent self catheterisation. Sometimes it feels like I'm between a rock and a hard place.

Thanks for the tip about the Birkenstocks I'll take a look.

[onelegbigger in reply to Perido]

Hello Perido, radical hysterectomy isn’t common, I have found few healthcare professionals who are familiar with it. I think my lymph problems are connected to the fact that on my right side the lower pelvis is still numb. Nerve damage I imagine, but I just think, well I’m alive with a fat leg.

Sorry to hear that you have additional problems.

[JanCan15 in reply to onelegbigger]

It’s nice to meet others who’ve had a radical hysterectomy. And thank you for the advice! It’s so nice not to feel alone!!

[sharon1234 in reply to JanCan15]

Welcome to my world. I just wish people would understand the suffering after radical hysterectomy is suffering from cancer but hey they're still alive Jade Goody she passed away you take care and keep safe

[Perce74]

Hi

I too had a radical hysterectomy 6 years ago

Im left with Lympheodema.

I have it in both legs but my right thigh is a lot more swollen lately.

I am waking in the night very uncomfortable.

I find standing on my feet a lot more doesn't help.

As for sandals, In the warmer weather any foot wear that is comfortable and lets a little more air in is great.

I have ended up with some amusing combinations of sandals and finding the right pair to go with a skirt or dress.

Bit tricky to know what to wear in the summer.

However, you are definitely not alone

Best wishes

[Perido in reply to Perce74]

Hi

I'm thinking about carrying a small spray bottle of water to dampen my stocking and thereby get a cooling effect in the summer. I was wondering if it would be best to use distilled water or perhaps I'm being fussy?

[Lynora in reply to Perido]

Any water will do.

[Squinny in reply to Perido]

When it gets really warm put the stocking in the fridge overnight then put it on cold, bracing at first but really nice for hot weather.

[kHP22]

I had a radical hysterectomy 25 years ago and developed lymphoedena even before I’d left hospital . It is a progressive disorder so yes I do think it gets worse over the years but it is manageable and there are lots of things that you can do to remain positive about it .

Trying to keep your weight reasonable is a good starting point especially if you have Lymphoedema in your legs . Less weight for you to carry around can only be good and also takes the pressure off your joints which can often be affected particularly if your Lymphoedema is worse on one side of your body . Mine us. Y left leg that’s worse . Almost double the size now of my right one but perfectly capable if being covered up so often many people don’t know that I have it . I choose clothes that purposely fit my body so in the day time I still wear jeans and tops because I’ve found some jeans that are stretchable . I’ve bought quite a lot because you never know whether they are going to disappear from the shops . As far as sandals are concerned , I still wear them . I refused to move into sensible old fashioned sandals many years ago . I’ve changed my garments from a full toe version to toeless . This means that I can paint my toe nails which makes me feel great and I can wear Nice flat sandals that either have toe posts or I’ve been really lucky and found some sandals that have elasticated straps around them and this works brilliantly . I’ve even worn those when I’ve been bandaged ! Not good for support as I’m always being told lol but really good for your mental well being which anyone with Lymohoedema knows is really important . Ones that have Velcro fastenings are also good . I’ve got several pairs of ankle boots for the winter that open up wide to put your foot in and then they fasten with Velcro so you can adjust them to how swollen your ankle is . It’s hard work sometimes trying to find them but they do exist and I always buy several pairs to last me a few years if I find them . Hope this helps x the main thing is to try to stay positive about your Lymphoedema ( easier said than done sometimes when you’re in a changing room and see your legs which are normally covered up ! lol but a positive attitude gets you through )

Just a thing to think about -

someone once said to me ... you are far more than your legs ! It’s important we remember that 😊😊😊xx

Don’t think that you can’t wear sandals , you just have to find the right ones !

[Perido in reply to kHP22]

Hi

The thing that has made finding shoes/sandals options much more difficult for me is that I developed lymphoedema in my right foot about 18 months ago. I need to wear toe caps in addition to my stocking (open toed) for the swelling in my toes. I'm not sure about toe posts for me because I think they might cause trauma to my swollen toes or maybe damage the toe caps? Where my normal foot will fit a 7D my lymphoedema foot fits an 8E. So far I've managed with flat lace ups and wear a thick sock on the normal foot and tie the laces more loosely on the right foot; I have not yet found a pair of sandals that are wearable for both feet; I'm wondering if the Birkenstocks, mentioned by onelegbigger, will work for me but my normal foot is extremely boney - I always was limited for style of sandals I could wear. I bought some last year with 3 velcro straps but unfortunately they hurt my right foot as I think the foot bed is a bit too narrow.

Sorry if I sound a bit moany I guess I'm just fishing for any more ideas - as you say we just have to find the right ones. I need the shoe shops to open so I can get looking!