Lymphoedema and leg wounds/ulcers

[genny74]

HI, I am 42, I have painful leg wounds/ulcers on both my legs large ones always leaking with fluids and smells bad, my trousers often are wet and they smell like I have wet myself which I have not, only one doctor finally worked it out but he would not give me proper dressings for them, my partner does my dressings out of what ever we can find and afford, the painkillers they give me do not work as the pain is terrible even when to touch and if I get a scratch or something on my legs they open up to new ulcers, my legs and feet are constantly swelling, the pains often brings me to tears, I can't even bend down without feeling the pains

[naominorthenellis]

Hi Genny.

Which came first, the lymphoedema or the leg ulcers? Do you wear compression of any sort to support for your lymphoedema? The way you describe how a scratch starts another leg ulcer, suggests that you could be experiencing lymporrhea which is the lymph fluid leaking through a cut or scratch. The leg ulcers could well be the result of cellulitis that would be a result of the lymphorrhea. The first thing you should do is find another doctor if it is possible. If it is lymphorrhea / cellulitis then you need a course of strong antibiotics and once you are healed then you should be wearing compression garments.

Often GP's don't understand lymphoedema or the conditions that can arise. If you go to the LSN website lymphoedema.org, you will be able to find details that you can take to your GP.

Another avenue of support could be to find your local lymphoedema clinic to see if they can offer you some advice.

We all know that the NHS is struggling with funding these days; but that doesn't mean you should be left to cope with this condition in pain and without support.

NNE

[Lynora]

Genny - where are you? UK or another country?

[Xylyne]

So sorry to hear about so much discomfort!!

[Hidden]

Hi there. You definitely need a second opinion and quick. If part of it is cellulitis , you need antibiotics immediately as it can be life threatening but if you have had it for a long time, it is probably something else. Your GP sounds very incompetent if he cannot even provide you with sterile dressings and someone to do it for you so they can keep a check on things. As mentioned it would probably be a good idea to contact the LSN for advice. Hopefully you get some comfort soon x

[4Gotten]

My mother in law suffered terribly from ulcers and always had use use dressings. I think you either need to see a different GP or go to your AE. This can't continue you are putting your legs at risk of permenant damage

[Brandish54]

Sounds like you have cellulitis which will not improve without antibiotics I suffered like that on quite a few occasions ending up with septacema blood poisoning and ended up in hospital you really do need to go to a different doctor as soon as possible do not hesitate the legs will not heal without treatment nurses need to be dressing your legs as they will keep an eye on them incase you need other treatment I was paying out £90 a week for dressing at one time until I nagged docter for what I needed

[Bijingo]

Hi Genny, plenty of good advice here so far - you need to be seen by a good wound clinic that understands ulcers and lymphoedema and vascular conditions. Dressings on their own will not do a thing. You need compression (bandaging, stockings etc) too, to help with healing and reduce/stop leaking. Please message me if you need more info. This type of care should be accessible to all people living in the UK. Ulcers, years ago, took years to heal - they should heal up much faster these days with the right care. Also, you need to look after your skin (moisturise, avoid scratches, wear shoes etc), and elevate your legs whenever you are sitting. If you've worn stockings/garments in the past and did not like them, there are plenty more products out there now to help (wraps, pumps, different fabrics). Thinking of you - you can get better!

[lovesradio]

Oh my darling, sending hugs as you sound as if you are in an awful place right now but please follow the great advice given by my fellow lymphies as they are spot on. Let us know how you get on.

[galtyboi]

Hi Genny,my heart really goes out to you,and from my past experience I know exactly what you are going through.Great replies from everybody,stay strong Genny,I don't know where you are ,but I am really surprised that a doctor wouldnt give you bandaging ,in the Uk you would be referred to a nurse for dressing and antibiotic cream ,washing the wounds and dressing with bandageing and stocking ,as well as given cream and bandages to take home .It didn't look like your GP is interested,id change your Gp if I was you,and in Uk bandageing is on NHS,as is antibiotic cream,so your husband wouldnt have to struggle.Be strong Genny,please let us know what Country you are in .

[genny74]

I'm from Australia, my partner helps me do the dressings for me out of whatever we could find at the chemist, not even the chemists can help me out and I'm always in terrible pains to the point that I'm on tears, even when they are touched and get dressings down, I'm afraid to bang my legs or get scratches or get things into my wounds worried they would get worse, I live in Tasmania as I become a carer to my partner that's also in need of help, and can't go to mainland cause we have animals to care for, here in Tasmania they have no idea in what they are doing, I don't know what else to do

[SmallBlueThing in reply to genny74]

Look out for a large darkened area of skin which could be due to cellulitis and would require a course of antibiotics, possibly in hospital.

You need foam dressings like Mepilex (recently dropped by the health service in the UK, as too expensive -- there are cheaper alternatives).

Clean the wounds with saline solution, without picking at them.

Moisturise your legs with Diprobase, Doublebase or similar (but not over the wounds until they're getting better).

Apply the foam dressings (DO NOT get a type with adhesive) and wrap legs with synthetic wool bandages (the warmth promotes healing).

Use Tubigrip, Comfigrip or similar elasticated tubular bandage over the top. It needs to be obtained in a size appropriate to your legs, and a wire frame applicator used. The applicator costs £23 on eBay - you could improvise one out of a bucket or flower pot with the base cut out, but the compression may be too much. Dressing your own legs is damned difficult. You shouldn't be expected to do it, nor rely on your partner.

You need to use dressings whenever you have a leak of lymph fluid, as it's caustic to the skin, likely to get infected and there's a route into your body from where the fluid emerged.

Keeping your legs elevated can quickly reduce their circumference by enough to reduce pressure to something more manageable for your system.

You could find the products mentioned above online, also soccer players' shin-pads would protect your legs from woody and prickly low-growing plants, but make sure you don't strap them too tightly or risk other damage from them.

Wishing you all the best!

[Teri903 in reply to genny74]

Hi Genny. You need to see a vascular surgeon. You may have veins that need fixed. I have had a wound for nine years. I am finally getting some where after I met my vascular surgeon.

[genny74]

The GP thinks my leg vains are too damaged to be repaired and thinks the wounds would keep coming back

[galtyboi in reply to genny74]

Looks like to me Genny,you need to get an opinion from a hospital doctor,your Gp is making a lot of assumptions ,and not doing enough for your pain and your leaking legs,If your legs are that bad he should send you to hospital.Try a different gp Genny as ask for a hospital referral.Thats what I would do ,maybe some other persons on here might have a better idea Genny.

[gilly123]

Hi Genny please go to a A&E department, It seems you have to pay for all your treatment but, go to the hospital and pay for anti biotics, cream and dressings, the hospital should have a nurse who will have the experience to look after you. I live in the UK but I have had problems getting help, at this time I only see the GP practice nurse if my legs are "wet" by this I mean, bleeding, pusy, or leaking, I know that feeling of constantly smelling and it does smell, but I wash my legs in the shower with baby soap as it is gentle and I use a ointment that is thick but melts on you hands to be able to bear the pain of touching yourself, this is called Epidermal Ointment their is Epidermal cream as well in a pump bottle. I pay for a home care assistant to come to my home to wash, cream and dress my legs with tubigrip. I am unable to wear the stockings as the pain is unbearable, I did have to fight for my treatment but a written complaint soon got the ball rolling. Good Luck Genny but please don't just leave it as I did, it will continue to get worse.🙋