LSN

How can I get dry?

I have a lower abdominal lymphodema (now goes down to my knees). It came on following a bout of diabetic leg ulcers and cellulitis. That was about 5 years ago, and my main problem is the continual leakage of lymphatic fluid through the microscopic holes left by the diabetic ulcers, and now the ulcers have grown quite large and deep and angry. Recently (and also when I get an infection) I have noticed leakage from some of my sweat glands - especially around the groin area and yesterday I started to leak from the lymphodema itself - basically into the gusset of my underpants. Because of the size and position of the lymphodema I can't sit down properly having to favour one buttock or the other. Inevitably this appears to be having a reaction on my hips ( as I am not a small chap - around 150kg). If only I could get dry then maybe we could start to work on the ulcers. I have had a dressing that had silver in it applied - that had to come off after a couple of hours due to intense burning it caused, same with another dressing that looked initially like wet plaster of paris bandage. Leaving open to the air, seems the best, as we have tried various pads, and bandages to soak up the fluid,(but within 2 hours the outside - pads/cotton wool bandage/ crepe bandage/ tubegrip - is wet to the touch) and they appeared to concentrate the lymphatic fluid onto the ulcers making them worse.

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You really need advice from a tissue viability nurse (TVN) - most GP practices have contact details, as one nurse tends to cover multiple locations. There are lots of different form of dressings available on prescription. If the oedematous area is leaking, this is unlikely to be the sweat glands, but more likely lymphorrhea - which is very acidic, and can cause surrounding skin to break down. I know you’re a bloke - but needs must - and a good emergency ‘mop’ is an old fashioned sanitary pad - especially a ‘nighttime’ pad. These can be tucked under the skin apron and held in place with underwear. Make sure they are changed out frequently - once wet through, change. If you are able to leave the wound open to the air, that’s good too. If you shower, pat the area dry, don’t rub - and if it’s still damp, (here’s another girly option!!!) use a hand held hairdryer over the area - on medium not high heat.

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Cheers lynora some great advice there. Have argued successfully with both the District Nurse and GP that leaving it open is the better bet, since leaving a fully soaked pad around the ulcers only concentrates the fluid on sloughed skin. And since (due to the size of the lymphodema) I can not do or get to anything below my waist the option of putting pads on the ulcers and replacing them as and when they get soaked isn't an option. I have instituted a pad n my underpants and that seems to be working. The latest problem is that the lymphodema seems to have grown - where as a couple of days ago I could "swing" rgw lump forward to allow me to walk, it now refuses to budge (suggesting its getting bigger) and I have had to adopt a crap like gait in order to get around. I do have at least one abdominal hernia and my fear is that more of my gut has slipped through thus increasing the size of the lump

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Oh gee, I’m sorry to hear about your troubles. I’m writing to say just that , since I have no knowledge of possible solutions, and I’m glad Lynora has all this knowledge to share! Do you know if this leakage issue will be as chronic as the lymphodema itself? What a royal pain! Really hope you find ways to manage this in the long run...

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Bill

Your situation seems a little further gone then when I had lymphorrhea, but I always found that filling the leaking point with savalon did the trick (having cleaned the area first) it would cause enough of a barrier to dry the leak, but also keeping the area clean.

You, sound like you have multiple leaking points, so this would probably be not very effective - I would strongly suggest specialist treatment as you may need to reduce the pressure as well as treating the wounds etc.

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The District nurse & TVN have switched me to Intrasite gel, basically they come in each day, clean the leg and apply the gel, this stays on for as long as possible - until I urinate (which due to the size and position of the lymphodema I do standing up in the shower), then I wash myself and have to wash myself again if the stinging starts (due to the fluid leaking - thus diluting its acidic properties on the skin). I cannot re-apply the intrasite gel myself as due to the lump I simply can't get at anything below the waist. This seems to be working as the amount of fluid leaking is starting to reduce - however the lump has now got bigger - I recognise this as I am having increasing trouble in walking and have had to adapt a crab like gaite in order to move. Also it is starting to cause bad backaches and I cannot stand for more than 5 minutes before my knees begin to feel as if they will give way, as well as pains in the thighs.

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Hello,

Sorry to hear you are going through this. My young daughter also suffers with lymphorrhea. The lymph fluid exits her body through the wall of the uterus so cream ect is not a viable option. St George’s recommended a specialist MCT diet which has completely stopped her lymphorrhea and reduced her swelling. Yours is obviously in a different area but maybe the mechanism for leakage is the same so the diet may help. The diet consists of eating a very limited amount of normal dietary fat (7g per day for my daughter) and supplementing this fat with MCT oil which is available on prescription. So the MCT oil is used for cooking, frying and as a butter replacement. There are no other restrictions on the diet in terms of carbs, or calories etc. The diet reduced her lymphorrhea almost immediately and the reduction was noticeable with a day and had completely stopped within a couple of weeks. This is a challenging diet but may be worth mentioning to your doctor to see if it may help you.

Best Wishes

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