Lymph fluid

[Bev-1966]

Does lymph fluid move to bladder from legs and make you pee more or does it stay where it is.

[Lynora]

The lymphatic system is a ‘closed’ system. What comes out in pee is excess tissue fluid, and cell debris, which the lymph system has collected on it’s journey, to deliver back to the blood circulation at the veins under the collar bones, which lead to your heart. The excess fluid and lymph is cleaned up and then the cleaned lymph is sent back into the bloodstream, and the excess fluid is directed to the kidneys. It doesn’t drain direct from the legs to the bladder - although it may feel like it!

[Hidden in reply to Lynora]

Thankyou Lynora. Now that's a good explanation! 👍 So where does all the urine come from? It certainly seems a lot more than pre-LD ever was! 😧

[completely-zero654 in reply to Hidden]

You too Hopalong? xxx

[Hidden in reply to completely-zero654]

Afraid I am completely-zero654. Mostly it's just clear, odourless fluid, which will only trickle, but by leaning forward and 'squashing' my swollen tummy against my thighs (especially my left side), I can increase the flow and relieve the urge to go. Saying that, I do 'leak' with every cough, sneeze and laugh!

I rarely drink more than 2-3 cups of tea a day, and a small glass of wine with dinner, and only need the loo 2-3 times a day. Yet come night time, I need to 'go' every 1-2 hours!! I feel completely drained - in all ways - and can't even remember having a complete night's sleep?

[completely-zero654 in reply to Hidden]

Hello Hopalong, thank you for answering my question it has been very helpful and at last there is someone who understands what I was trying to say. Exactly the same as I pass too, just clear odourless fluid. I start with a "trickle" but then a waterfall, then thinking that is that about another egg cup full comes. Even when I have "cleaned" myself there is a very small drip, drip after, which is very annoying as need to do a complete change.

Nights can be exhausting as you have said, can anything from 2-4 times. I only have half a glass of water to take my night time tablets and other that go with them. I just dare not drink much before bedtime but to be honest it does not seem to matter as I have to get up to wee if I drink or not. Exactly what is a good night's sleep? Think only way is to sit up in a chair all night but then legs end up looking 10 times the size.

I am having yet another bout of cellulitis and never since I have been having it has it been so bad. I have just got off the bed having had 2 extremely sore and painful legs which were put up higher than my hips, and it does give some relief although short lived. The soreness of anything touching them though has sent me into orbit. Never had cellulitis this bad before and wish it had never ever happened as just can not cope feel so so poorly with it.

Thank you once again for replying....xxxxxx

[Hidden in reply to completely-zero654]

So so sorry to hear you have the dreaded Cellulitis again! I'll message you.... xx

[CCT67]

Hi Bev, I have bilateral full leg, truncal and arm LE. It spread upwards over the years having started in my feet/lower legs. I have a lot of oedema in my left groin, lower back, and abdomen but do not wee more now than I did when I only had it in my legs. In saying that, I have always drunk a lot of water daily (at least 2 Litres) so I’m always going to the loo! Have you increased your fluid intake lately? It’s important to drink loads of water to help lymphatic drainage (counter intuitive when we have oedema but it’s very important). I have to wear made to measure class 2 compression including a trunk garment which makes going to the loo tricky but the garment does help address the truncal swelling. It might be useful to Speak to your LE nurse about garment options for your lower trunk/torso 😊 🦋

[completely-zero654 in reply to CCT67]

Hello CCT67, hope you do not mind me pouncing in here? Just needed to ask you, does lymphoedema always go to other places in the body? At present and for a good 14 years had it in lower legs (just below knees) and ankles/feet. Now suspect I have it in my right inner thigh/groin area, it is more puffed up than the other side, also seem to have a fluttering heavy feeling, which is not all the time on the right side too. This seems to be relieved when I have had a decent long wee then about half an hour later the feeling I have described in my tummy, well just above the groin area. Does what I have said make any sense to you please as you have it, bless you, in other places too.

I did not know that it could come in other places, although I am aware of where the lymph glands and all are in the body. Guess the body just breaks down and then it hits another area? It is a really horrible "illness" we all have and wish all G.P's , people took notice and realise what this does to the body and mind.

Thanking you for reading this....xxxxxxx

[CCT67 in reply to completely-zero654]

Hi there,

I don’t mind you asking! 😊

It’s not uncommon for LE to spread particularly in those of us with Primary LE which it sounds like you have. (Primary LE is usually seen in unilateral and bilateral lower extremity LE). Sadly, it can spread very slowly (over decades) or more swiftly (over a few years). I have 3 Lymphie friends with Primary who started with LE in one leg, then many years later it struck in their other leg, and then spread upwards into the lower trunk before moving into the upper trunk. Another friend has it in her lower legs and now developing it in her hands/arms. All 4 of us have a shortage or absence of lymph vessels in all or some of our limbs as shown through Lymphoscintigraphy and/or ICG Lymphography scans (specialist investigatory scans for Lymphoedema). We also have issues with lymph valves and nodes, but the lack of lymph vessels is thought to be the main contributor to the oedema spreading. In my case two episodes of cellulitis in my upper left leg and groin prompted swifter spreading and worse oedema in my left groin than right side

It sounds like you may have some spreading into your abdomen and would advise that you arrange to see your LE clinic/nurse. Wearing compression up to your waist woukd also assist to manage the oedema (and slow spreading) if you aren’t already using compression. I religiously complete SLD daily 4 times (including loads of deep abdominal breathing) and have MLD with a qualified therapist at least once per week. Also use kinesio taping. Compression therapy with flat-knit made to measure garments for my legs, trunc and arms are also essential tools in my toolbox. I observe the swelling in my legs and groin/back/abdomen to be reduced after several hours of being horizontal. I struggle to reduce swelling in my left upper body/breast but it responds well to MLD.

Your comments about how dreadful this disease is and how ignorant doctors are are sadly all very true

Take care xxx

[Bev-1966]

Hi cct67, I have bilateral full leg lymphoedema, I did ask my nurse if it had gone to my stomach as I look 9 months pregnant but she said it isn’t and also under a proffecor about my bowels so it could also be that.

She did give me 2 pairs of stockings and 1 pair of tights but my next app not til sept so can’t use new garments til April/may time, I’m lucky if I wee 4 times a day and I’m drinking tea all day. It’s just a member asked if lymph fluid went to bladder to make her wee more as she is up a few times during the night going to toilet.

[ssc123]

Hi Bev. Interesting question and one I asked on behalf of my daughter a number of times. She has lower leg lymphoedema and was continually needing the loo and had occasional wet accidents. To cut a long story short it was found that she is also struggling with lymphorrhea where lymph was leaking out of her lymph vessels which wrap around her stomach and exiting her body through the wall of her uterus. For us this appeared as urine but was lymph and she was going to the toilet more as a way to control the lymph flow. I understand that this is rare but still worth considering as a possibility.

Best Wishes x

[completely-zero654 in reply to ssc123]

Hello sc123, I too am having water problems and have accidents which is not nice at all when you have cellulitis or come to that any time. It just comes out like, well imagine a tap with a small blob of water in the spout it gets bigger until it bursts from the spout, it is just like that, just comes out and is clear, no odour nothing. Also have swelling in inner right thigh which seems to be relived when this happens. No lumps there, just like fluid collection inner thigh. Just can not get any answers until I saw yours to Bev. I too have mid-leg lymphoedema and have cellulitis at the moment.

Bless you for helping us all out, have some idea now what it may be.

Take care and thank you for sharing this with us xxxxxxxxxx

[ssc123 in reply to completely-zero654]

Hello completely-zero654. I’m so sorry you are going through this. Your description sounds just like my daughter explained. She is only 10 and was needing to wear sanitary towels due to her frequent leaks as well as continually going to the toilet . I’m not sure where about you are in the country but Dr Gordon at St George’s really helped and has a handful of patients who are also struggling with this. The good news is my daughters symptoms were stopped completely when she started an MCT diet which was recommended by Dr Gordon. Her leakage reduced immediately and stopped completely within about a week of starting the diet. Dr Gordon said the diet doesn’t work for everyone and can have varying improvements but may be worth mentioning this to your consultant to see if this is an option for you.

Best Wishes. X

[completely-zero654]

Hello Bev,

Exactly the question I was going to ask too as it is bothering as well as this cellulitis yet again. It is just clear liquid and sometimes it is impossible to hold, and even when you have a wee of clear water and cleaned yourself up, still get it "dripping" down. You can clean yourself until the cows come home but still lose water, and I am blowed if I know where or what is happening. No fun when you have cellulitis.