Back in 2011, I wrote a post on lymphorrhea that briefly explained what it is, why it happens, and what to do if it happens to you. It’s been one of the most viewed posts here on the site, so I thought it’d be a good idea to revisit the topic and take a more thorough look at lymphorrhea and lymph.
“Are you there, God? It’s me, lymphorrhea.”
My first experience with lymphorrhea happened when I was a senior in high school. I was sitting in a quiet auditorium, taking an exam with the rest of my classmates, when I noticed my right ankle felt wet.
I reached down to wipe at it absentmindedly, but a few seconds later it was wet again. Wiped it. Still wet.
To my horror, the fluid just kept coming. It was draining out of seemingly nowhere — I had no cut, no scratch that I could see, just a teeny-tiny pore-sized break that had spontaneously began to leak.
It continued until my shoe was completely soaked through with the unknown fluid, and I was praying it would stop before someone noticed. It felt like a scene out of a Judy Blume novel: what was happening to my body, and why did it have to happen at school?! I sat through the rest of the exam unable to focus, instead feeling utterly mortified and silently freaking out.
“Mortified and freaking out” is, I think, most peoples’ response when they first notice fluid leaking from their body. What is it anyway, and where’s it coming from?
Lymph fluid
The leaking fluid is a substance called lymph, although it goes through a couple transformations before it actually becomes lymph.
The fluid begins its journey as arterial blood plasma, but once it flows into the tissues it’s called extracellular fluid. Within the interstitial spaces in the tissue, the fluid delivers nutrients and oxygen to the cells and removes the debris and waste. After all that’s done, most of the extracellular fluid rejoins circulation as venous blood, and the remaining bit stays behind as lymph.
Watery and usually colorless (although sometimes it has an amber tint to it), lymph is full of waste, pathogens, and undigested proteins removed from cells. The motions of muscles and joints help pump lymph throughout the body, filtering it through lymph nodes as it journeys upward toward the base of the neck. There, the cleansed lymph is drained through the subclavian veins and returned to the circulatory system.
For visual learners, this video from the Khan Academy explains it really well:
Lymphorrhea: what’s going on?
Lymphorrhea is when lymph leaks from the surface of the skin, usually manifesting as a beading or trickling of fluid. Insect bites, abrasions, cuts, wounds, cracks — no matter how small, any break in the skin has the potential to allow lymph to weep through.
According to lymphedema specialist Carmel Phelan, “the pressure of lymph fluid inside the skin tissues is so high that the skin is unable to stretch fast enough to accommodate the fluid”; this makes the skin so tense with excess fluid that the slightest bump or knick can result in lymphorrhea.
Lymphorrhea can affect any area of the body, but it most commonly occurs in the legs and genitals.
Treating the leak
If you spring a leak, don’t worry — there are things you can do to treat it, either by yourself or with the help of a caregiver or lymphedema therapist.
First, you should clean the area where the fluid is leaking to reduce risk of infection. Then, apply a moisturizing lotion to help heal the skin and protect it from further breakdown. Dress the wound with sterile, absorbent, non-sticky bandages, and then wrap your limb with short-stretch compression bandages. With this added pressure, the leaking should stop within one or two days.
Don’t forget to change the bandages often, as the weeping lymph may make them wet and uncomfortable (not to mention it can cause further skin breakdown). When you’re at rest, elevate! Once the leakage has stopped and your skin’s condition has improved, you can don your usual garments again.
As always, double check with your lymphedema therapist or doctor on what they recommend. They may advise differently depending on your symptoms!
Complications and prevention
The earlier you address your lymphorrhea, the better.
If left untreated, it can lead to serious complications for lymphies: the protein-rich lymph fluid is considered a natural food source for bacteria, meaning the draining break in the skin provides an entry point for bacteria to enter your body. This can cause infection, such as cellulitis, lymphangitis, or erysipelas. Lymphorrhea is also highly caustic to skin tissue and can develop into a large, gaping wound. (If any of these complications occur, immediately seek medical attention.)
A good prevention tip is to be compliant in wearing your compression so your lymphedema-affected area isn’t overloaded with stagnant fluid. One of the best thing you can do to avoid lymphorrhea, though, is to take care of your skin by keeping it clean and moisturized. Also avoid cuts, bites, and scrapes on your affected area if you can — I know that’s often easier said than done, but if you’re careful, your chances of lymphorrhea will be that much less!
I had lymphorrhea for on and off for several weeks. On Cinco de Mayo, when I was planning our celebration, I suddenly felt very ill and severely cold. A bone shattering cold. I went to bed and awoke the next morning with severe pain in my left artificial knee. The 3rd day I was unable to walk and had a high fever. I was taken to the hospital and Dx with Sepsis and went into an altered mental state for over 1 week. During this time I had many tests and surgery to thoroughly clean my knee of all infection. I spent 2 weeks in ICU and then 3 weeks in Rehab/skilled nursing in recovery. On my last day in rehab I sprang a leak in my right leg. Please do not ignore “springing a leak”. It could be a matter of life and death. Thankfully I had an infectious disease doctor that knew sepsis and saved my life.
Thanks so much for sharing about lymphorrhea. Good overview of an embarassing side effect of lymphedema.
When I had leaking, I didn’t know I had Lymphedema. The doctors thought the swelling was from
vein problems. They operated for the vein problem and the swelling got worse. The leaking
was terrible. Using the process of elimination, they decided I might have Lymphedema. When I
went to therapy, the swelling got better right away.
Until this very moment, I had no idea that what happened to me had a name! I have lipo-lymphedema in both legs; my left leg is much larger than my right and I have huge lobes that began inside my knees and are now mid-calf on my left leg and just descending on my right. In 2013, my ”swelling’ (what we called it at the time) in my legs was so severe by days end that I could no longer comfortably sleep in a standard bed, and had moved to our recliner instead. My husband propped 2 layers of pillows under my legs each night to help them feel better by morning. One morning he was removing the pillows when to my horror, the pillows under my upper thighs and knees were soaked through the top layer of pillows! It had left a yellowish stain, so I automatically assumed that I had experienced bladder incontinence (I also have secondary progressive multiple sclerosis). I had never had an episode that severe, so of course I was embarrassed! But my husband looked at my backside and said it hadn’t come from my bladder…the wetness was all around my knees. I couldn’t find any area with cuts and my internist (who knew nothing really about lymphedema and had initially diagnosed it only after I googled it – small town country doctor) couldn’t figure out what it could be! I fought for PT and got no help except the suggestion to buy 6″ wide ace wrap bandages and wrap my legs myself…no instruction at all! So, I googled quite a bit more and rea about lymph leakage but this is the first time I’ve heard the term for it. I also discovered the Lymphapress compression sleeves and fought for Blue Cross Medicare to cover them and was successful! I only had to pay my 20% DME co-pay, which I gladly did! Now, I’ve moved to a CA where there is more knowledgable healthcare and hope to meet with a physiatrist or lymph specialist. I have 2 different blood clotting disorders as well, so I will be seeing a vascular doctor as well. I’m also suspicious now of having it in my arms as well, as my mosquito bites will weep fluid non-stop, leaving streams of sticky lines down my arms each morning. Wow…this has literally got me weepy with joy! ANSWERS! What an incredible blessing! Thank you so much for having this page here for others! :)
My sister Wanda all over again, looks like elephantiasis, like stage 3 I believe, there are 5 of us Sissy’s, we don’t know why or where hers came from. My prayers and dreams for a miracle are with you as well.
I have 2 cousins on my father’s side who grew up with it too, and I didn’t connect with them until recently…so I know where mine came from now! One of those cousins has a daughter who is also struggling with it. It’s just so sad that any of us go through this. I’m still battling for care as my left leg has grown to 60 inches in diameter where the lobe is! Thank you so much for your prayers…they are much appreciated! :)
My Dr told me she had never encountered someone that sprang a leak from their breast, but I’ve always been a little different. At almost 64, a leaky breast can be problematic. There’s no compression garments that I know of for breasts, and I can’t keep it any more elevated than what my bra can do. Fun times. Fun times.
Bellise bra by JOBST
Hello. My name is Viktoria. I have just read your story and I am really sorry that all happened with you. Almost all the same happening now with mom and everywhere she goes she isn’t able to get the right treatment. She lives in Hungary but regardless of that may I ask you what was the exact treatment that helped you? I am sharing my email address to you and would you mind to share any advice with me ,anything would help .My mon is struggling now after long months nothing improvements on her leg :( Thank you so very much .
My email is : viktoriavincze@yahoo.com
Have a wonderful weekend
Sincerely: Viktoria Vincze
Boy I share your nightmare I have multiple chemical sensitivity and there are no products I can use
I leaked for 12 Days nobody knew why result fo a ulcer now I am fighting the healing process of this ulcer 15 months still no closed
I an taking ozone IV’S it is a nightmare and Dr are stupid have no idea
You think the lymphatic system would be first on their mind
Take care
Hi. Not sure if you will see this, since you wrote this 5 years ago. I hope you are doing well. I am writing back to you because you mentioned huge lobes on the inside of your knees. I have these too and it has been so difficult and embarrassing to wear pants at all. I was diagnosed with lymphadema about 3 years ago, but I had it much longer. When the bulges by my knees started developing, I just thought I was getting fat. I tried to work out, but it didn’t help and was hard because my legs were so heavy with the fluid. When I finally got diagnosed, I felt some relief to know what was happening. It’s still hard out in the world though, because most people don’t know what lymphadema is and I feel like they just see me as fat. My lymphadema affects both legs (currently having severe drainage from wound on right leg), including lobes of fluid on the inside of my knees (I am currently having significant lymph drainage from the left lobe), lobes on my inner thighs and my lower abdomen. Reading these posts have made me feel a little less alone today. So thank you. 💜
I have same as you both legs draining and itching huge wounds went to er just wrap it them fi
Thanks 😊 for this, my leg is draining fluids so, now I can catch it in time b4 worsening
Pingback: Lymphorrhea: the leakage of lymph – The Lymphie Life
HI,
You cannot believe how glad I am to have found this. About 7yrs ago, I was diagnosed with Bone Cancer, that led to a Hemi-pelvictomy and a hip implant. Since the first surgery, I have had 6 wound washes, to drain out the fluid that seems to accumulate at the surgical site. The first couple of times it happened, I was put on heavy IV antibiotics and then they found a fungal infection and I was on anti-fungal for 2 yrs… all because I refused to get my implant removed (that was the only solution docs seemed to have for the fluid accumulation). After 2 yrs of anti-fungal, I seemed to be fine … for about 8 months and again there was fluid accumulation and another wound-wash surgery. This time the surgeon decided to leave the VAC in for as long as needed, which ended up being 2 weeks. A month later I was leaking through a pin-hole in my leg-groin joint. Fortunately my surgeon was out of country and he advised me to manage with dressing it and keeping the area clean and dry until he got back. Once he got back and I spoke to him, his only solution was another surgery and that I would eventually need to have my implant removed. But i disagreed and he sent the fluid for testing and that is when we realized it was lymphatic drainage and he had no idea when it would stop leaking. So i refused the surgery and said I will get the leaking luid tested regularly to ensure that my implant does not get infected… and will continue to manage with dressing the area etc. I have been doing this for 2 whole years now… Is there any way to get it stop?
Hi Preeti – that’s a tricky question. Lymphedema/swelling in arms and legs is usually best managed by wearing compression garments. If your fluid is accumulating because of a deeper leakage in your pelvis region, compression may help. If you can find a therapist who knows how to do lymphatic drainage massage, they may be able to help you. Find a therapist, or a doctor who understands lymphedema better.
Hi preeti I am from India, I have lyphedema inboth legs. Is here any lymphedema specialists doctor?
Sorry Rajat, Haven’t been able to locate one despite talking to many of my doctor friends.
Hi, I believe there is a clinic in Rajinder Nagar in Delhi- Dr. Gogia’s clinic. I visited them in the past- hopefully they are still there. Link here- http://amlamed.com/CV_drgogia.html
check them out- they were helpful in providing me with compression bandages and information.
Hi Preeti,
This might help, although I suppose that it is the VAC [a programmable, low-suction vacuum] you mention: https://www.sciencedirect.com/science/article/pii/S0741521406019732#bbib11
This Review’s Abstract describes it more: https://www.ncbi.nlm.nih.gov/pubmed/15943495
A further technique with that VAC [of instilling and removing fluid] is described at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6267613 BE WARNED: NASTY WOUND IMAGES (especially Case 4, Figures 14, 17, 15, 16 – vulva). You may want to set your browser to “Text Only” mode.
It appears quite different from the PhysioTouch Alexa tried: https://thelymphielife.com/2016/09/11/nln-international-conference-2016-a-peek-behind-the-curtain-of-lymphatic-research/
Personally, I love Yarrow (achillea millefolium) {and Plantain helps (plantago major or minor – NOT the fruit)} for wounds! Use as a poultice, salve, edible, or tea. Fresh is best, both are weeds here in MN (USA). Don’t confuse Yarrow with Queen Anne’s Lace! Know that some are allergic to yarrow, especially if the treated area is exposed to sun (rash or blister).
Disclaimer: I am NO professional, so consult an herbalist (or an MD [likely-clueless]). {I.e.: This is not medical advice, so do not blame me for any of your or my ignorance!}
Thanks, Alexa! It’s my guess that MANY of your readers get here because of (congestive) heart failure; so an article specific to that would be appreciated.
Best Wishes Always to ALL.
Hi Preeti, I am from India and suffering the same. Pls let me know if you found any Therapist or anything that can help.
Thanks Alexa for a detailed explanation of lymphorrhea and how to manage it. This information is so important and useful for all people with lymphedema/lymphorrhea. Cheers!
this is currently happening to me right now. I had testicular cancer and got radiation and surgery to fix it. now that I’m all healed from the cancer, seems as tho I’m having long term side effects. I hate that I conceded to get radiation therapy.. it ruined my body.
I’m sorry that happened to you concidering there are 300 natural cancer cures out there that cures even terminal cancer but the big pharmacies like. Big pharma and the government don’t want to loose there multi billion dollar company so they put a hush order and gag on these proven cures that are 98 percent cured people. Go to a website called the big cancer lie it may help you and hopefully u can help someone. Else because there are cures out there that won’t require surgery won’t require radiation or chemo and it won’t destroy your body because the cure is natural it’s cheap and can be found at your local grocery store good luck and again sorry for what you had to go through
Yeah, Steve Jobs thought so, too, until it was too late for current practices to save him. I am a 13-year survivor of stage 3 breast cancer and 11 year survivor of colon cancer. I availed myself of every weapon to fight, and I do have scars but I’m here and enjoying life. It’s not helpful to anyone to peddle lies about unproven options for cancer treatment. Unless you have the education, experience, and numbers (not just anecdotes), you should stop spreading that nonsense.
Grande – read your story. I have had liver cancer 2x
And both times radiation was used. It was 4 years from the first to the second. I am so screwed in my head. Can you tell me some of the effects of radiation in your body, if possible. I will understand if no answer.
I’ve had lymphedema in my legs for 18 years now after surviving a massive bout of cellulitis which put me in hospital for weeks. Leakage comes and goes, my current run is at 3 months.
I hate leakage, it raises my potential for getting infections massively. In 18 years I have had 9 bouts of septisimia, 7 bouts of pneumonia, 7 bouts of cellulitis and 5 of blood clots on my lungs. Each requiring at least a week in hospital.
My leakage goes straight through absorbent pads, bandaids, bandages, compression stockings and my clothes.
I’ve done the nappy thing when in hospital, the nurse told me there was no way I’d fill it, it holds 2 liters (about half a gallon). I filled it in less than 3 hours. Also soaked every towel on the ward, they were not happy.
I’m at my wits end at the moment but have a few things that have worked in the past for me:
– bandage strips which come in 1 meter to 5 meter lengths, makes it easier to wrap around an
affected area because you cut the bandaid to fit, then stick it on (found on ebay under first aid dressing strip plaster)
– towels, using one then washing it and using another, rotating them. Absorbing as much of the fluid and removing it allows you to cut down on smell and avoid damage to the rest of the skin, the lymph fluid is slightly acidic and will cause irritation to the area.
I had a huge problem elevating my leg, it was so big and heavy, about 3 times bigger than my normal leg.
– I got an armchair which reclines using an electric motor, my legs are held up by the feet part, allowing hours and hours of comfortable elevation, obviously lying down is better but for extended periods a chair is excellent. You can actually do something and elevate the leg at the same time. Also cut down on problems of having to get back up. I found a recliner which I had to pull back didn’t work, but less overweight people may find they work for them.
– Wearing clothes that don’t cover the area, if its at the bottom of your leg, consider a skirt (for us ladies), shorts or culottes, which sit higher than the point of leakage, this avoids the yucky smelly clothes issue.
I love this blog, it is simple, straightforward and honest. In dealing with lymphodema I find honesty from medical professionals severely lacking. They don’t know what to do and they don’t care. I once had a woman chase me down on a public street because she needed information and no one had helped her. She was so desperate, she didn’t know how to help her daughter. I sat with her for half an hour giving her every piece of info on hospitals, physio and occupational therapists that I could think of, anything that could help. I was late to classes that day but I’ve never forgotten her crying and thanking me over and over for basic info she should have been able to get from a doctor or the hospital.
So I’m here in Australia, having a really bad run at the moment and today this blog shows me I’m not alone, I’m not the only one having these problems. Thankyou for the article, I hope my points, (which are rather simple) help someone else as much as the article you put up has helped me.
Hi Alex, do you know any pediatric lymphedema specialist in australia? My newborn has secondary lymphedema at both of his feet due to ABS (amniotic band syndrome). The constriction bands had been removed but we don’t know how to manage his lymphedema. Could you advise?
I’m going through hell with this leaky leg stuff. I never get help, that’s all I hear is how fat I am. I have no where to turn, I’m alone, no one cares I’ve been sick with this horror now going on 6 months. It’s happened in the past, but would clear up, now it’s unreal how much liquid is coming out of both my ankles. How do you find a Doctor thY even knows what it is?
I also have lymphedema. I have had the fluid leaking out, but not in years and not in the amount it is now. For me, it is more of a nuisance than anything. It is a bit scary, but reading similar stories makes me feel somewhat better.
I have been elevating my leg and my sister helped me to put gauze and wrap it. The challenge for me is that my leg is so large that the compression wrap moves. This is my first day with the wrap. I am thinking to see a doctor but I do not know that they will be able to do anything.
Meaghan, I found a great product on Amazon that alot of friends on FB in the Lymphedema groups use! So, thought I’d share it with you. It really does help keep your garments where they’re supposed to be, and my legs are also very large with large, hanging lobes too. I hope this works for you! :) https://smile.amazon.com/gp/product/B001CUU9KI/ref=ox_sc_sfl_title_6?ie=UTF8&psc=1&smid=A1JBWQEE14Q7FJ
Thank you for a great article on Lymphorrea!! This is the best collection of information on this aggravating leakage many of us with lymphedema have.
Both of my legs are affected by lymphedema and lymphorrea has been a problem since the beginning. For me, it doesnt go away in a couple of days; it takes weeks, months, or even years (what I am experiencing now). My legs have been perfectly fine, and midday at work, I have suddenly realized the front of my pants leg is wet and my socks are soaked. I have even found myself in a puddle on the floor and not noticed it happening.
There is a lot of shame (people notice the wet stains and complain about odor), but you cannot just stop your drainage from happening by willing it. What you can do is reduce the size of the affected limb through compression, thorough washing, a 40% zinc protection cream (like Desitin or Boudreaux’s Butt Paste), and dry pads applied often to absorb the drainage. (I recommend feminine pads because they are cheaper than expensive medical pads.) And, elevate as much as you can.
My skin gets macerated fast if my socks get wet and then wounds develop. My skin is torn up by the draining lymph. It is a slow healing process for me, even with weekly visits to wound care.
Recognize that we each heal at different rates, and lymphedema affects each of us in unique ways. Don’t let people’s judgments of you (and they DO judge) discourage you. They have no idea how this affects your mind (frustration, anger, helplessness), body (pain, infections, sudden changes), or spirit (self-loathing, shame, embarrassment, loneliness). Keep on going despite what is happening. Do your very best one day at a time. You are not alone!!
Thank you soo much for writing this. I have been told that I have and that I don’t have lymphedema. My calves swell greatly everyday but my ankle area is normal but that is where the leaks come from. In fact when the leaks first started in 2017 I wound up with an infection that turned into septic arthritis in an artificial knee. I had been wearing a feminine pad as you say but none of my doctors seem to care about what was happening. I spent 2 weeks in Intensive Care and completely unaware and then 6 weeks in rehab to relearn myself after almost dying. After that much time off my feet my legs had lost all of the fluid. I then went to a physical therapist to learn how to wrap my leg and she told me she didn’t think I had lymphedema. I can’t understand why this isn’t taken more seriously. My calves have once again doubled in size and started leaking. Everyday I make sure to do a thorough cleaning and dressing of the area. I purchased cheap compression stockings but they don’t help.
It’s just nice to know there is someone out there going through the same issue. Thanks again and much love and blessing are being sent your way.
Could it be that you have lipedema that has turned into lymphedema? This can happen if you are overweight. I have both, so it’s possible you do too. I have large cuffs at my ankles and lobes hanging off both legs – the one on my left is the size of a turkey. I have lost over 100 lbs in the last year and the lobe on my right leg has reduced from a volleyball to a flat sack, so this confirms lipedema. However, this all started after a fall in the shower, so the lobe on the left leg continuing to grow while I’m losing weight also confirms lymphedema! It’s a strange disorder, so it’s possible you are able to stay reduced with compression & elevation. Good luck to you and don’t give up! :)
I also can’t tell you how many times I’ve been told I do and do not have lymphedma. Mine came on the scene after I had surgery, chemo, and radiation for Stage 3 breast cancer. That was 6 years ago and I finally found a physical therapist who wrapped my legs with padding and ace bandages to get the swelling down, followed by compression garments to hold it steady. Worked great until this year when we had record breaking heat wave. The medical folks don’t understand that compression garments in heat over 115 degree F do not mix.
At any rate, my swelling is so bad now, I’ve started leaking for the first time. It’s horrible. But now I know what it is and I will see if I can get the leaking under control. I also have diuretics that I only take when I really need them. Glad I found this website!!
The only way to take care of this awful condition is to have your doctor refer you to a hospital affiliated wound clinic.
I have had bad lower leg edema for some months. Doctors have not found out why I go for an ekg soon to check my heart. Today i hit my leg on something. I thought it was bleeding I appeared to have a tiny 1/16th inch cut but it was not bleeding it was leaking a clear water like fluid. It has been leaking all day. Today is a holiday tomorrow if it hasn’t stopped i will call my Nurse Practitioner.
Since that occurance I have found that liquid bandage works to stop leaking from small cuts, but better yet eating pineapple or taking bromelade or papya has reduced my swelling tremendously. You should eat some protein before taking because the enzymes dissolve proteinso better the food than your flesh.
I have Lymphedema in both of my legs, pretty much from my thighs to my toes. Right now I’ve got 2-4 spots that are leaking near my knee on my left leg. 2 are constantly going, the other 2 kind of come and go. Today is the 3rd day it’s been happening. About a month ago it was a couple spots on my right leg. I just have to let them leak until they stop on their own. I can’t wrap them because the dressings will just fall off almost right away. And I can’t keep the spot elevated constantly because of where it is. Even at night when I am laying in bed, the leaking doesn’t seem to stop. I was referred to a new Lymphedema specialist in town, but because my insurance company considers me home bound (because I have home health services), they are unable to see me.
I had to change insurance companies to be able to go to a physical therapy to start helping me with my lipedema I have been under a doctor’s care for years and he has never sent me to a doctor for it I had a nurse practitioner come from a hospital just to say it in one day and asked him why hasn’t he ever sent me for help I’ve had water weeping out of my legs I didn’t know what what’s going on. So bad that I could hardly lift my legs I am 60 years old almost 61 and I’ve had it all my life my legs are huge and I think hardly walk I hurt so bad I keloid so I cannot have service like everyone else I have cut my leg in February 2nd and I’ve had stitches and he has not healed yet and during that time of the cut it has poured water fluids a lot I have been on antibiotics and it has still not healed all the way I’m hoping to therapist can help me Monday when I go for my first session I will keep you all informed and I hope that now I am under care and I never knew doctor to where I can get help for my lipedema I have had it my whole life as far as I can know my legs and butt has always been bigger than everybody else even when I lost weight I still have my butt and thighs I don’t sleep in the water surprise me my friends never knew it and someone was in the nursing field but they never knew I with water until I ask why did they ever tell me what was going on with me and I never knew I would water so please don’t force your opinion or what’s going on with your body the other people it will help sincerely and I’ll keep in touch keep your prayers for me as that I will feel better
It’s such a relief to know that I’m not alone in this, but it’s also heartbreaking that so many doctors remain clueless. The leaks I’m having to deal with now just will not heal, and it’s been over a month of continuous cleaning and wrapping. I’m so tired of this. The suggestions and tips have been wonderful, thank you all so much for helping me through this painful mess.
Been on antibiotics since July 2018 and still weeping 🙁. I don’t know what to do and get so confused because you see so many different things said to do/not to do!
I am a 10 year breast cancer survivor, and have lymphedema in my breast, and a couple other small areas. A couple of months ago, my breast started leaking lymph fluid, it just lasted two or three days. I was kinda hoping that it would keep going, and that maybe it would drain the uncomfortable collection of fluid in my breast…alas, it did not.
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Good to know that I am not alone. I am a 10 years breast cancer survivor with lymphedema on my right arm as a result of the surgery.. Suddenly two days ago fluid started coming out of my arm without any cut or scratch. I was never informed that such a thing can happen. Very frightening!!
My family physician nurse treat it. Today the amount of fluid decreased. Hope it will stop in a few days!
There is any way to prevent recurrence? I use compression garments and do exercise to diminish swelling.
Any recommendation will be appreciate.
Very interesting and helpful. Just a word on subscribing, though – it’s VERY difficult to read the white-on-light-grey writing in the subscription box!
Why the constant burning of the liquid on the skin & feet. It feels like battery acid,
It truly is comparable to battery acid! Ive bio idea edgar tti do about this intense pain . I’m nearing the end of my tether!
Here a new one, which is how I got here. While normally the lymph fluid leaks from extremities, I recently experienced it with the side of the skull, Just above the ears and a small place on the back of the head. What I thought to be just dry skin behind the ears was dry lymph fluid, A sort of powder or crust. At one point it was a stream running down the side of my neck. Treating these areas with Castile soap and rubbing alcohol along with a zinc bactine ointment seems to help, but stopping it all together, don’t know since its right al the base of all the hair in the skin. So far have not gone to the doctor for it, but yes, it happens more than just extremities.
My ears began leaking after a severe contact dermatitus indicent. I’m on my third oral antibiotic, have tried several ointments and still I leak. The leaks have affected other skin areas (behind my ears and in my scalp and on my neck).
Great information, although mine leaks out of my tummy area from different areas and a lot of thick fluid too, does anyone ever have this ?
Lymph can leak from any area if there is significant congestion. Best to get the area checked – other conditions can cause the skin to be wet too (ex fungal infection). If it is lymph, best management is – keep the area clean, wear compression (or bandage over), self massage, exercise etc
I had bladder cancer 12 years ago, developed lymphadema a year later after injuring my left leg, because lymph glands were removed when removing the bladder. I went to a vein specialist and he told me to to wear 130-140 support hose. I did therapy for a month and have not had to return. Last night I injured the lymphatic leg and it started to leak. Today I am following the plan listed here on my own. Thus far, I am not leaking. I wait for tomorrow to rebandage and wrap with ace bandages and hope all will be well soon. Thank you for this vital information.
I forgot to mention that my therapist gave exercises to do four times a day which I have been faithful to do. They help to keep the swelling somewhat down and makes the leg feel comfortable.
Can you elaborate on what exercises you’re doing?
I am just now discovering that I have this. I haven’t been diagnosed because I do not have insurance currently and I don’t have a regular doctor. I have had a wound on the back of my leg for the past month that just appeared out of nowhere drains and drains. Every dressing I’ve tried just falls off or gets filled up too quickly. They also hurt to the touch because it is an open wound. I can see it is trying to heal but it will not. I am so scared this will never heal. I am working from home right now, and home is a hotel room due to losing a job a couple years ago. Because of that I have to work while sitting on the bed and the leg that the wound is on is hanging over the edge of the bed so it’s near impossible to elevate it. I put it on a pillow each night when I sleep but the swelling doesn’t really go down much. Does anyone have any suggestions for getting dressings to stay on and for elevation? The wound is on the back of my calf so it hurts to put the leg flat on any surface, even the bed.
I’ve been using sports wrap and surgical tape to keep menstrual pads and cut up incontinence pads on my calf. It seems to work ok.
I use ozonated olive oil spread around the weeping spot with a sterol gauze place over it. It seems to stop the leak; and the ozonated olive oil is a good disinfectant. The oxygen that the skin gets if good for you. No side effects.
What does everyone do for the pain in the wound and in the leg? My wound is extremely painful to touch and clean, sometimes it feels as though i can feel the tissue ripping as fluid goes through it but i doubt that’s what is happening it’s just my best way to describe it. My leg feels like someone say and punched it for hours and bruised it everywhere but of course it isn’t bruised. I have no idea what to do to help the pain
I have dealt with lymphadema for many years, mostly in my lower legs. This past summer I started having leakage from an old hip replacement incision. It required that I keep it covered at all times as it leaked that much. My primary care physician sent me to an orthopedic doctor who specializes in joint replacement infections. He said that he could test the fluid and do what is called a washout. After many cultures nothing was ever found to be an infection of any type, including fungal. He did the washout and after spending 5 days in the hospital I was sent home with a wound vac and IV Vancomyacin, which I did the infusions myself at home. After about 8-9 days the wound vac starting pulling out fluid and didn’t stop even after having it on for three weeks. The wound vac and tape was causing so much skin irritation that it was taken off and I just had a light dressing on it. The IV antibiotics lasted for six weeks and I am now on Doxyclycline for three months. I now have an area on that new/old incision just as big as it was before my surgery on October 19th of this year. I had mentioned lymph fluid possibility to both my infectious disease doctor and my ortho surgeon who both said that it could be a possibility but nothing was said further about it. I do have follow-up appointments with them both in January but I have since made an appointment to see my primary care doctor again to get her opinion on this large area that is swollen and draining again on that incision. To me with all the antibiotics that I have been and am on now, it could not possibly be an infection of any type as the infectious disease doctor couldn’t get one positive result from all the tests/cultures that she ran and even sent off to another state for a DNA test. If it is lymph fluid, how can you treat the drainage when it’s located on the outside of your hip area? Right now I just keep it clean and covered but it is a pain to deal with and would like to find an answer as to treatment or a solution to this issue. Any advice would be greatly appreciated. PS Is there a test that can be run to determine if it is lymph fluid? Thanks…….
My wife who is 80 years old now broke the neck of her left femur bone. Two years ago the brake was “Screwed” together which was a bad medical decision. 18 months later a new hip joint was installed. The new joint is good; but edema has been the problem now. “Weeping” started recently; but because of my “health minded thinking” the application of ozonated olive oil has stopped the drainage. One application of the thick oil around the leaker with a sterol gauze stop the leak. Olive oil with Ozone prevents infections. This does not stop another leak should another damage to the skin occur. She has had serious consequences from antibiotics for UTI which were eliminated by the application of ozonated olive oil when I had to “CAT” her. Logic would make me believe that it must be lymph fluid; because this is the only fluid that comes from the skin other than a “stinky” infection. Remember that too much antibiotics can cause C-DIFF. The use of CBD coconut oil has helped the pain of surgery. She has tried so much to try to help her Lymphie life that we use logic and the internet for help. The doctor who did the “pinning” of the greatly displaced brake of the neck of femur bone had the typical logic which was covered with “GREEN” and not what fellow orthopedic specialist’s recommend. If I were asked now about what to do about the broken hip on my wife, I would have to say my logic and the Internet tells me to immediately put in a complete new hip joint. Now two surgeries later, edema has developed into a serious matter; but my logic and the Internet is helping us.
Sunday, I noticed something sticky on my leg. I was cooking so I assumed I spilled something on it. Cleaned it off but later noticed it was still sticky. Yesterday. washed it really well, was a little crusty when I got up, thought I was good. Noticed it again later in the day. It is just a tiny red spot, like a bite from a really small bug. No raised spot, just a dot. pinched around it this morning and see that it is draining some fluid. Totally clear but kinda sticky. I have autoimmune issues and do suffer alot of swelling and inflammation. Hood to know its totally fixable on own. Thank goodness it’s not bad like some of the stories on here. I feel for you. I will try some compression and see if I can get it to stop.
My wife broke her left hip femur just below the ball and went thru two surgeries. The first was a mistake to pin the offset brake and the second a year and half later to put in a completely new hip joint. Edema of both legs was serious until now two years after the incident. Weeping has occurred which has successfully been treated at home by the application of ozonated olive oil around the leak. I message the legs from foot to hip to help the swelling. She is 80 years old now and is regaining her ability to walk. I have also applied CBD coconut oil to the leg for pain.
I’m experiencing my second bout of weeping. The first time it was in my lower right leg. My legs swell all the time from blood clot and surgery issues with my veins. The other day I bumped my right leg slightly but it was enough to look and sure enough it broke the skin. It didn’t bleed but lymph started coming out and has continued for three days now. I have tried all sorts of things but none work. It has slowed so maybe it will stop soon. I had a blood clot in my right thigh several years ago. A few days after surgery a swelling started at the surgical site that was as large as a big fist. I went back to see my surgeon and he gathered all of the surgeons in the clinic to see what I had. I guess he didn’t have any idea or wanted a training aid. The decision was that it was NOT infected, it was most likely lymph and they feared if they opened it the wound would never heal. After two month the swelling went down. However since the lymphatic system had been opened the lymphatic system in my right leg has never healed. I have continued swelling even after two vein surgeries.
Although I was only diagnosed with Lymphedema recently, I have been suffering from the effects of it for about 20 years. (I’m 37 now.)
When I was in Highschool, I too was sitting in my school’s auditorium but reached down and felt that my left pant leg was wet and sticky. Thinking I must have leaned against something wet and not noticed, I shrugged it off and moved on.
Fast forward to college when my foot was swollen for some unknown reason and doctors were clueless. I just lived with it. Eventually both feet and legs became severely swollen and I had progressively gained weight. I was embarrassed and hid my legs to avoid the attention it always drew.
Fast forward again to my second lymphorhea case (though I didn’t know till then that this was what happened back in high school.) Last year, after a lot of tears and emotional turmoil, I finally agreed to see another doctor where so many had left me feeling like a helpless case. Found out that I also have hypothyroidism. After being put on levothyroxine for my thyroid and seeing a lymphedema specialist for wrapping and manual drainage massages I was finally given the tools and knew what I was facing and had hope for the first time in a LONG time. Thankful for people like you who are sharing your journey and resources to prevent others from living a life feeling resigned to an unknown fate. God bless you.
-Lauren
About a year ago (August 2020), I noticed a hard lump which was between my right hip and towards my backside, One day I bumped it on a corner of a cabinet and it opened up a small area on an old hip incision, which proceeded to start leaking fluid. This right hip of mine has had 5 surgeries, which included 3 hip revisions, Last October, I had a wash out done on that hip (surgery #5), as the ortho doctor was thinking maybe infection. An infectious disease doctor was brought in who tested the fluid for every kind of bacteria, yeast, etc, etc. and nothing was ever found to be an infection. So I pretty much had the washout for no reason. After being in the hospital for a week, I was sent home with a pic line and six weeks of Vacomyacin IV antibiotics, just in case! The incision healed pretty much over the next few weeks but then as the fluid built up inside once again, I began to leak again from the same area and was put on a wound vac and home health for several months. Since that time I still continue to leak an amber colored fluid and am presently on a Snap Vac which is do-able because it’s a much smaller size wound vac than the original one that I was on. There was about three weeks, earlier this year, where my “tunnel” healed up and no drainage during that time BUT one morning I woke up and the whole right side of my pajamas was wet and the drainage had returned. I have been going to a wound center once a week to have my Snap vac changed and the tunnel measured, which presently is about 12cm (approx 5 inches) deep and goes into the metal implants in my right hip. It has been discussed that the fluid could be lymphatic since I have lymphedema. I was sent to a lymphedema specialist who helped me tremendously by massage, garments, etc. I continue to have my tunnel and drainage and am still on antibiotics (doxyclycline) indefinitely as long as I have this open tunnel to the inside of my hip. It is something that I have resigned to the fact that I may have to deal with this forever but it can be a bit depressing at times. Oh, I was also sent to a surgeon to see if the tunnel could surgically be closed and he said that no way would he close up a draining tunnel to only have it reopen in the future (based on my past tract record). So I am wondering if anyone else has had a draining tunnel? Thanks for reading my reply.
This sounds almost exactly like my situation. Unfortunately there seems to be no remedy. I am not on any antibiotics and have been managing with a local sterile gauze dressing for nearly five years now as I am not willing to undergo another wound wash (have had 7-8) nor am I interested in doctors telling me to remove my implant, which will essentially make me wheelchair bound (i use a walker to move around currently).
I had my first experience with lymphorrea today, and was suitably “freaked out!”
I had a cancerous lymph node removed one week ago in my right armpit. The incision is healing well with the surgical glue starting to peel.
After drying off from a shower this morning, I noticed a trickling of clear, sticky fluid running out of a part of the incision.
I called the surgeon and spoke to his triage nurse. She explained what was happening and told me to keep the area clean. She also suggested putting pressure on the area. After about an hour, the leaking stopped and I haven’t had any addition leaking today.
Should I expect this to keep happening? Should I keep putting pressure on the area occasionally?
I’m at 84 hours of consecutive leaking from a scratch on my thigh. They don’t make compression garments big enough for me and it’s in a place that can’t have pressure applied. I’m SO tired of this. I’m so done.
When I spring a leak if it is small I use styptic pencil and liquid bandage. I have found that eating pineapple or taking bromelain or papaya reduces the swelling quite a bit. You should take it with some protein like mix it with cottage cheese or eat a protein before you eat the pineapple and take gotu-kola.
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Dr. Maxim Itkin at Penn Medicine in Philadelphia is the man to see. Wonder worker!