Do you believe that your Lymphoedema was triggered by ... - LSN


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Do you believe that your Lymphoedema was triggered by having a blood pressure reading or blood test/injection

LymphSuppNetwork profile imageLymphSuppNetworkPartner207 Voters

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33 Replies
gillannan profile image

Mine was triggered by lifting heavy branches 18 months after a mastectomy.  A physio told me in her experience you were more at risk if you had cording and prolonged loss of lymph after a mastectomy

grannydoug profile image
grannydoug in reply to gillannan

That's interesting as i had prolonged loss of lymph after the mastectomy.

grannydoug profile image
grannydoug in reply to grannydoug

PS and was result of dog-walking large dogs a couple of years later.

lizzie66 profile image

I am one of the 'Unknowns' - seeing the percentage of sufferers who do not know what triggered their Lymphoedema I don't feel quite so alone! It never occurred to me that there may be a link to Blood pressure readings or Blood tests...why would it? This is a very interesting Poll and I hope everyone on this Support Network votes.

Holliday profile image
Holliday in reply to lizzie66

Yes need learn more

Brandish54 profile image

I was told by a doctor years ago that I had got lymphoedema due to the possibility that I had four c sections when I was pregnant and a cyst removed from my leg all I know is my movement is getting worst by the day I can hardly do anything  myself

Holliday profile image
Holliday in reply to Brandish54

I had etopic when pregnant will this cause lymphoedema had this twenty years ago I had camera through belly button twice l had lots infections taken lots pills.

violetsnowdrop profile image

I was informed it was latent in my legs until a TKR (knee replacement) after which it became active.

Sarahlcb profile image

Ive had Lymphoedema since I was about 13 years old, I'm now 25. My GP at the time was useless and didn't seem to care, so me being 13 decided to not care either, it has since come to light that a lot of women in my family suffer with it, but no one talked about it so we didn't know.

maxr1974 profile image

I believe my lymphoedema was caused by an infection under the nail of my little finger. The infection started the day after WLE and removal of 11 lymph nodes. The lymphoedema was finally diagnosed 2 months later. Have it in my left arm, armpit, breast, chest and occasionally around my shoulder blade on my back.

Jr1234 profile image
Jr1234 in reply to maxr1974

Thats a fast diagnosis it took me at least a year and half to be diagnosed. But I hadn't taken notice of my swelling until it had gotten a lot worse and kept getting fobbed off by doctors

maxr1974 profile image
maxr1974 in reply to Jr1234

hi jr1234, I was lucky that I was still seeing breast nurse and she got me in to see lymphoedema nurse which has a base I Bristol so was near by.

Jude4 profile image

it was caused by my having an op. for cervical cancer in 1987, and having every lymph node taken from my right groin, to see if there was further cancer, which, thankfully, there was not.

Chris21 profile image

I was told it was something that I was born with. I've always had problems with my right foot and leg as a child and then when I was in my twentys the left ankle and leg decided to swell too. At least they match each other now!

Anne16 profile image
Anne16 in reply to Chris21

Me too! I'm 75 now!

Beverley_01 profile image
Beverley_01 in reply to Anne16

Hi, After seeing several doctors I was told that I had primary lymphodema in approximately 1990, two years after my feet and legs started to swell. Since then I’ve learned that primary lymphodema is something that you are born with which does not transpire until puberty years. I also understand that it can be inherited although I’m nit aware of anyone in my family with this condition.

Anne16 profile image
Anne16 in reply to Beverley_01

Yes it is inherited, my paternal grandmother had it in both her lower limbs and feet, which I do too. So far no one else in my family has got it. Hope this helps please let me know if I can give you any help/tips/advice. Happy New Year!

Beverley_01 profile image
Beverley_01 in reply to Beverley_01

It’s really nice after all this time to speak to someone who has the same condition.

Happy New year.

Anne16 profile image
Anne16 in reply to Beverley_01

There is lots of information on the LSN web page on how to manage the condition etc. Take care x

I don't know what caused mine. I'd been camping and standing a lot in a very warm summer but no medical interventions or insect bites. I was 28. I've been told it's one of those things and sometimes just happens.

vixiej profile image

I think mine was triggered by sunburnt feet at Le Mans one summer. I consider myself very lucky to get an early diagnosis (after seriously hassling the doctors). My measurements have decreased significantly, and most people wouldn't know I have it unless they see my hosiery. I am a runner now and I am prescribed sports compression socks by the lympho sister when I see her, so that I don't get too much pooling when running longer distances.

irishlass-1 profile image

Mine was triggered by a physio giving me bad advice.  He gave me a sleeve to wear when I was gardening but no glove and didn't tell me not to wear it at night (or indeed not to wear the sleeve without a glove). I looked at my hand after wearing it overnight the first night and had lymphodema.  Devastated.

Jennymary profile image

Mine manifested itself in my breasts, about 8 months after breast cancer surgery 

Christo profile image

I had treatment for cancer at The Royal Marsden in Sutton - I have suffered with severe Lymphoedema in both feet, legs and torso after the radiation treatment which was too severe. It was offered as an alternative to minor surgery in the rectum - in hindsight it would have been preferable to the lifelong LE. At no time was it mentioned that the radiation therapy carried any risk to the lymphatic system.

It was a complete shock when after 5 years the swellings started. Have very mixed feelings about the poor advice given at the time. It took another 3 years to get a correct diagnosis!

 Good luck with your survey which seems a bit superficial considering the questions asked are very limited.

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divadogface profile image

I to have Lymphedema in both legs and feet .I to had radiation that was very severe. No body said anything about getting Lymphoedema; very surprised when I woke up with this swelling one morning. Dr. was very sorry for adding extra treatments, was a little to late.Not any place to go in Alaska so I do the best I can for treatments. It sure changes your life.

claire_gittins profile image

mine was triggered by tying my boot lace , i felt a pain and my foot was swollen within 2 days and they found out 10 moths later in is lymphoema

beelymph profile image

I really do not know what triggered my lymphoedema. I recall back in college, I just woke up with high fever and my left leg was hurting. I was brought to the hospital and they couldn't make out what was wrong. Eventually, my fever subsided and the pain on my left leg too. That's when I noticed my leg was swelling especially towards the evening. The doctor advised me to keep my legs up, especially when sleeping at night. That made it look normal the following morning. I lived with this situation for quite some time. However, the swelling worsened when I got pregnant due to weight gain; and I noticed that the swelling does not subside totally. It was still swollen the following morning even if I kept it up with pillows. I underwent several medical tests and the doctor's diagnosis was that I had iliac vein stenosis of the left leg. I was asked to wear compression stockings or elastic bandages. After about a year, due to an unfortunate incident, I had a cut on my left heel. The cut did not really bother me but the following day, I had high fever and my left leg was hurting again. The pain was terrible that any movement on the affected leg made me scream in pain. I was rushed to the hospital and the doctor told me that I had infection on the leg. After about 2 days in the hospital, we noticed a small blister on the affected leg (at the lower shin which "ballooned" like the size of a golf ball. It burst leaving an open wound and fluid was coming out. I was in the hospital for about 3 weeks because my fever was on & off. I was advised to rest and take a leave from work for 3 months. The wound took a long time to heal because of too much fluid. When it did heal, it left an ugly keloid scar. My left leg looks freaky with the swelling and the keloid. I have lived with this for more than half my life (by the way, I'm 54 years old); and have forgotten how it feels to wear skirts, shorts, leggings, high heels & closed shoes. I have to wear wide leg pants which most of the time are custom-made. I have deprived myself of enjoying public beaches and pools for fear of infections; and the stares I would probably get from the public. Finding the right shoes is always a dilemma. Since my work entails annual travels to different countries, sitting inside the plane for long hours is really very uncomfortable. Not all planes have seats where you can keep your legs up. For medication, I only take Daflon.

Sorry, this is very long. I just want to say that I am blessed to have a very supportive and caring husband; and I am so happy to find this support group who can relate to what I'm going through.

pedal999 profile image

I had axial node clearance during mastectomy surgery in September 2014. After this I wore a silicon wrist band, warning of "No BP, no needles, Lymphoedema risk"..

Unfortunately one day around spring 2016, I noticed part of my forearm was slightly sore, so pulled my my sleeve to look at it, and found the silicon wristband had worked its way up my forearm, and was now too tight around the forearm.. I moved it immediately, but from the next day onwards, began to notice clothing imprints in my arm, from seams, material weave etc..

Unfortunately therefore, mine was triggered by a silicon wrist band, designed to lower the risk by warning against BPs, needles etc..

My take is that it probably would have happened at sometime, as the trigger was very minor...

I am heartened by this poll, even though there are only 19 responses, but it does appear that hardly any of us had lymphoedema triggered by BPs or needles..

Holliday profile image

The site is great I feel I am not alone I know learn lot more either good or bad

grannydoug profile image

I replied "No". I believe my lymphoedema was the result of repeatedly dog-walking the string, larger dogs at our local animal rescue centre a couple of years after my mastectomy. Then compounded by decorating a small room at home. I'd taken my eye off the ball as I settled back into life after the physical and emotional shock of the cancer diagnoses and treatment. Hadn't realised lymphodoema can strike at any time not necessarily just after the operation.

SV2001 profile image

My massage therapist opined my lymphedema was triggered by my being transferred in the surgical suite. I had undergone surgery some 3 weeks prior to the swelling.

Mine was caused by breast cancer surgery and radiation treatments.

Mine was caused by breast cancer surgery and treat with radiation.