Fluid leaking from legs

Hi Bet 76.I have lymphedema and have suffered for many years but mine came on after pregnancy and I haven't had chemotherapy or radiation. Yes my legs leak occasionally and sometimes it's due to when I have been standing for too long, the summer best of the start of an infection like cellulite which is more common. It sometimes reduces if you can rest with your legs up higher than your head but personally I would contact your doctor or the clinic for advice which is what I usually do having been hospitalised with cellulitis needing iv antibiotics as it can flare very quickly. I take it you have the compression garments and moisturize your skin regularly. In the meantime until you can get an appointment rest as much as possible with your legs raised, try and place a bandage,gauze pad or clean sanitary towel on the area to absorb the exude or failing that wrap a clean pillowcase around the area and if you have any inadine or povidine iodine spray put that on before you put the bandage on(if using a pillowcase don't use as it stains) as it helps to dry it up. Hope that helps but contact either the doctor or clinic for advice, use the ask a nurse section on the Macmillan website but may take a couple of days or I believe there is a lymphoedema group on here. I add that I am not a medic but work in pharmacy.

Thank you for your advice. I have nothing no support garments or compression support. I have been totally ignored by my GP and my consultant check up has now been delayed by over a year. Feel totally lost and really struggling today. 

My left leg is losing fluid and my right has loads of small blisters on it. Both feel very tight. Although better as I’ve had then raised this afternoon. 

The only thing my GP did was put me on daily water retention tablets and painkillers. I put cream on every night and never let them go dry but with this addition water leaking I’m now stuck. Changed my pjs three times today. 

Any advice is helpful. I’ll ring my GP tomorrow. 

xxx

It sounds as if it won't be long before the other leg is joining in, sorry to be the bearer of bad tidings. He or your consultant needs to refer you to a lymphedema clinic so you can be measured for compression garments which you wear daily, not very sexy I'm afraid, but they do a good job to contain the swelling. Try and get an appointment tomorrow as you may well need antibiotics as a precaution and when the leaking has stopped if the lymphedema referral hasn't kicked in you need class 2 compression stockings made to measure if your legs are very swollen as standard stock won't fit over a certain circumference. You will also need dressings and inadine dressings to dry it up so a referral to the district nurses wouldn't go amiss either or to the practice nurse if they aren't available(they are very busy). If that doesn't work out to go your urgent care centre or a walk in centre of phone your CNS. Good luck. Hope it all works out. Keep in touch. Love lamb.x

Great advice from , . How awful that you aren't being looked after very well at all. I didn't have chemo or radiotherapy but I would of thought that a lymphedema speacialist would of been contacted by either your GP or consultant, with everything that your experiencing. Yet again it seems like a post code lottery for treatment and post treatment.

Sending you a gentle hug hope you get sorted soon

How did you get on Bet76? Any news? How are your poor legs now?love lamb.xx

Seeing my GP today. Hope to get some sense. But I know what he’s going to say “your too heavy and you need to lose weight”. We’ll help my pain and legs and I’ll be able to move. Not looking forward to this at all. 

Thank you for checking up on me. Xxx

HI ,

Did you get to see your GP and was he supportive?   I was so angry when I read your posts!  I just can't believe that your lymphedema has been so neglected.  It does appear to be an issue that is not checked for..  The key point about lymphedema seems to be that it cant be cured but can be controlled and managed to reduce the more advanced problems and it is so wrong that no one is helping you with this. 

I was really worried about it when I read that it could follow from External RT as my legs were already a disaster area with veins and phlebitis. Until I raised the possibility of it happening to me, no one ever mentioned it to me personally.  I now know some areas do have a lymphoedema service  - if there is one in your area do press for a referral.  I discovered that ours was prioritising cancer patients when I felt my leg was swelling and I did get to see a specialist nurse who offered me good advice.

I do hope you are in less discomfort now..  

PS.  I think I remember your original posts from when you were first having treatment - am I right?

I saw my GP and had a good appointment. He finally listened and has now referred me to the lymphedema clinic. He phoned them whilst I was him and actually gave me 40 minutes appointment. 

I’ve had antibiotics for my legs, creams and painkillers. So far they are working and I do feel better today. Going back to work tomorrow!! 

seeing my consultant in few weeks and I have to say once my appointment is done I will be sending a letter to the chief executive. 

Yes it is me class of 2016. Still here but have to say everyday is a battle. But one I am determined to win. 

Thank you for your messages. Xxx

HI ,

glad to hear you have been listened to and I hope the improvement continues.

I'm so pleased to hear that the gp appointment was a positive experience and that you have now been referred. You will find the clinic so much help with advice on skincare, footcare and footwear and they will measure you every six months for garments..make sure they do two pairs, one for wearing and one in the wash. I think we've all been down the road of "you are too heavy, loose weight". Whilst it does help it does not always solve the problem entirely, it's still there. One of my fellow sufferers who I hadn't seen for ages due to my problems and surgery waltzed into the pharmacy looking marvellous, a shadow of her former self. I knew she had been on a prescribed weight loss pill but I personally didn't think it was working too well as progress was very slow and she was very down. Having seen such a transformation I naturally wanted to know how she did it so she told me she had resorted to a bariatric sleeve and yes she had lost all the weight and her leg was better but not completely well.  She still had to wear garments albeit now in a smaller size, she had a load of loose skin from loosing weight too fast and now had added problems with not being able to eat properly. She told me she wished she had never had it done ..it wasn't worth the added problems she now had. So please, if you are trying to loose weight do it sensibly and slowly, eat less and more healthily, move more, keep a food diary and exercise record..and remember we don't have to join a gym to do it, brisk walking, gardening, running and bouncing around..all free and no contracts! Aim to lose no more than 1-2lbs a week to keep it off successfully. Actually Macmillan has an excellent move more package with a DVD in be.macmillan if anyone is trying to lose weight. Glad you are feeling much better. Take it slowly if you are going back to work and try and rest your legs. Love lamb.xx