Puffy leg

hi all

i'm 3 years post radical hysterectomy and have had an achy and puffy leg the last couple of days.  My leg was a bit tingly and swollen round the ankle and back of the knee and now I have noticed my groin area is the same.  I'm out tomorrow with friends and at a festival over the weekend for my sisters 40th birthday.

i'll ring my gp in the morning but just wondered if anyone has any advice?  I assume this may be lymphoedema since I did have many lymph glands removed during surgery.  what should I do to help it and do I need to get checked out, how urgently and by whom?

i'm worried this could be something that turns into a long term problem and feeling sad and scared.  Typical it should start when I have plans and just before a bank holiday weekend :(

thanks Kirsty x

 

Hi Kirsty,

 

Sorry to hear you're having issues with this so far down the line! I'm 11 weeks post op and awaiting lymphedema review as my left leg is puffy from hip to knee so I know how bloody annoying it is!

I'd call your CNS if you can to see what she says as she can get the ball rolling for a review with the lymphedema clinic....in Manchester I've been told the wait is approx 3 months so I'm helping myself in the mean time. I've bought myself some Spanx cycling short things which really help with the swelling control during the day so this might be an option for you? Also I'm paying privately for manual lymphatic drainage (MLD)....you can find a registered therapist via this link http://www.mlduk.org.uk/therapists/ or to have just basic lymphatic drainage massage most physio/sports massage clinics can offer this in the meantime. I've found it really helps....I pee for England immediately after sessions so it must be getting my fluid moving!!

I too was terrified about the consequences of this and have been stressing about having an elephant leg but in all honesty it's an annoyance but it's not got any worse. I drank a bottle of wine last Friday and I was very puffy and sore on Saturday do I'd avoid the booze if you can help it or at least alternate drinks with water! Drink lots and lots of water and keep moving....Google breathing exercises for lymphatic drainage too...simple but effective.

So ring your CNS first of all and if you can squeeze in a lymphatic massage I would do :)

Hugs, Sarah x

A few more tips i've read

- Try and elevate it whenever possible

- keep the skin well moisturised

- avoid sunburn or injury to the leg

- try not to stand in one place for too long.  Keep moving or have a sit down

- be carful not to restrict the leg with tight clothing.  Well fitted compression underwear as suggested by Sarah is great but I have been told that tight clothing (waistbands, hems of shorts etc.) can prevent the lymph from flowing.

- FInd some simple lymph massage vids on google.  These show you how to massage lymph nodes in your neck which act as a vacuum to get the lymph flowing elsewhere in the body.  When I do it right I know as my stomach gets really gurgly.  I do all of these things as preventative measures.

Have fun at your sisters birthday and just get seen as soon as possible.  The sooner you are seen the sooner they can get it under control if it is lymphedema 

 

Hi both

Thank you so much for the replies.  I had a busy day today!!!  I spoke to the triage nurse at the doctors who insisted I went in.  Had an appt first thing and based upon my symptoms the gp wanted to rule out a dvt and booked me an urgent ultrasound and banned me from driving.  Bang went my catch up and picnic with a friend and watching the kids and their friend at airhop.  Luckily my friend took the kids for me while I went to the hospital, bless her. The ultrasound was clear as I expected, the gp wanted to double check.  with that ruled out I need to see the gp again on Tuesday am and see whether the swelling has improved to discuss next steps.

The swelling and ache is a bit better this evening and hopefully that is a good sign but it does come and go.

i spoke to my cns this afternoon and she was patronising, there there i doubt it could be lymphodoema.  Could you have injured yourself, have you been to exercise recently?

i have had a puffy left ankle several other times recently especially when I have sat for long periods at work so don't think this is isolated and it seems to be getting more frequent.  It's not bad yet but I am trying to avoid it getting worse and manage it.

i plan to follow your tips and advice and look after myself better.  If things don't improve I'll try a private massage and see if that helps.  I haven't exercised much the last couple of months - I have been so tired over summer, the kids have been off and my chest has been tight due to hay fever.  I wonder if that coupled with being cooped up in the house during  the rainy weather, a mass ironing pile of school clothes and labels and standing up making lots of cakes with the kids haven't helped.  I usually do more exercise and walking (school runs etc).  I am hoping I can last at the festival this weekend and will make sure I don't stand still.

thanks again :)  Sarah - hope you get seen soon and things improve for you.  

Best wishes Kirsty x