This is something I have been thinking about for a few years now. I have Idiopathic lymphedema in both legs for around 15 years. It started at the same time in both legs literally over night ( maybe not quite overnight but near enough ) very strange lol 😂 I had a few tests on my first visit to the vascular surgeon including a CT scan thing with contrast. Anyway, the tests were conclusive that is is lymphedema, the scan also showed enlarged lymph nodes throughout my entire body. The surgeon was very concerned but had bloods done and he spoke to a colleague and the colleague told him that as my bloods were ok and no other nasty symptoms they concluded I was ok, again idiopathic 🤣 I get that all the time.
I was wondering if the Lymphedema in my legs might have been caused by the radical Hysterectomy I had age 26 ? I mean we are talking a gap of 30 plus years ! It was only when talking to my Daughter, who is a Nursing Sister, that we both thought there might be a link ? My Daughter said mum, all those years ago, goodness knows what they did during surgery 🤣 they could have taken a few or several lymph nodes, it’s highly unlikely there will be any notes now. I said yes especially as my thick folder of old notes are lost somewhere in the system, haven’t seen that old folder for years whereas they used to put an elastic band round my old and new folder, now there is only the new one. Was just wondering what you lovely folk think about the Hysterectomy and lymphedema being linked ?
thanks everyone 😊
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chazy
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Hello Chazy, i had a total abdominal hysterectomy when aged 27, 33 years ago.I was due to have radiotherapy but due to the tumour growing close to the lymph nodes, surgery was suddenly scheduled.
3 years later my left foot suddenly began to swell. My Dr told me it was chilblains ! No surprise GP's back then often had little knowledge of lymphoedema.
It took years of returning to the GP due to the swelling & throbbing pain now in both feet, both legs, pubic & abdominal areas until i got a referral to a lymphoedema clinic run locally by a Nurse who had a personal interest in lymphoedema, and many years later to St Georges Hospital via a Psychologist thank goodness.
I too have often wondered over the years if i were to present today with Cervical Cancer what treatment pathways might be available & if the outcome may be different.
In answer to your question, for me there was definately a link.
I was advised that removal of lymph nodes in the pelvic region, which I believe is part of a radical hysterectomy, means you have a lifetime risk for lymphoedema.
I developed lymphoedema 25 years ago, within days of a radical hysterectomy. I was later told they removed 25 lymph nodes from my pelvic area. So yes I would definitely say your lymphoedema is connected to the radical hysterectomy, even though you developed lymphoedema years later. The risk is lifelong.
Thank you all who replied 😊 so it seems 30 odd years later my hysterectomy did play a part in my Lymphedema! I have no idea if they took lymph nodes, back then the surgery was pretty brutal compared to my sisters of 4 years ago, mind you she got to keep an ovary whereas we didn’t. As the surgeon had no explanation about the sudden development of Lymphedema in both legs I am now convinced it was lymph removal, no notes though to prove anything. No explanation about why I have enlarged lymph nodes throughout my body either 🫣😂 I can palpate many of them too lol. Oh well as usual with these things it’s onwards and upwards. Thank you again all for your very welcome replies ☺️
I had a radical hysterectomy with removal of some lymph nodes in the groin, followed by radiotherapy. I developed unilateral leg lymphoedema 3 years later.,My GP sent me to A & E with a,DVt. Not the case. Nobody mentioned lymphoedema either before or after surgery or during radiotherapy.
I did my own research and saw Professor Peter Mortimer who confirmed lymphoedema. So 30 years of mostly self maintenance but still v. fit and attend an advanced classical ballet class. It's a curse but my life was saved.
You are right Geraldine, saves lives ☺️ I was just curious if all these years later if in fact they did remove lymph nodes and it appears that they probably did. I pondered after getting Lymphedema why I got it but never connected it to my surgery. Then more recently having other issues with my health and legs I thought more and more about a possible connection and that’s when I brought it up with my Daughter, it was like a lightbulb went on and we both said, you know what that is probably the cause. The classical ballet sounds wonderful 😊 I am struggling a lot with several other health issues at the moment but I try to keep positive and most of all cheerful and grateful. Thank you for your reply 😊
It is not idiopathic - it’s Secondary Lymphoedema - directly caused by the hysterectomy. There is very little chance they avoided removing a bunch of lymph nodes all those years ago! Have you been referred to a lymphoedema clinic for advice/treatment for lymphoedema management?
Hi Lynora and thank you for your reply. Yes I was referred initially but to a vascular surgeon as my GP was thinking blood clots. Anyway after the scan with contrast etc he confirmed bilateral Lymphedema. He sent me to TVALS to be measured and fitted with stockings, unfortunately every type reacted with my skin, I have Psoriasis and my legs did not like stockings. So we went with wraps , it took forever to get something that did not immediately produce a bad Psoriasis flare on my legs, we even tried silver liners but nothing worked. I am now wearing silver dressings plus urgostart dressings then comfifast tubular bandage then the wraps. I unfortunately cannot keep the wraps on all day as I need to re apply the top dressings and apply steroid/emollients, as the psoriasis areas leak out fluid which means I have to change them, though the silver dressings stay on for 3 days then changed. It’s such a faff but I have been advised to wear the wraps as much as I can TVALS and District nurses are sometimes on top of things and other times not so much 🤣 It’s a real pain in the butt. Yep, more and more I think about this the more I believe lymph nodes were taken I just was never told. Thank you again for your reply, at least now I know the likely culprit 😊
hi Chazy,i had a hysterectomy and developed lymphy legs some time after. Not diagnosed until I went to my doctors as I had lost lots and lots of weight everywhere else,but my legs were still very plump and puffy. I had never thought it could be because of losing nodes after the op,you have made me think now!
I read a lot of lymph related articles by Kelly Kennedy and she says that scars from surgery can contribute to lymphodema,as scars go far deeper than we realise and damage lymph flow. I was glad of having the hysterectomy when I needed it,because of such heavy painful periods,but I wish I had gritted my teeth and waited for menopause instead.
I really find lymphy legs a trial. As you said,it’s such a faff!Im sorry youre struggling,I know how you feel, Im about to try wraps as I have always found compression stockings very difficult to live with XX
Hi Stella. I feel for you, it took me a long time to realise that my issues with my legs probably stemmed from that hysterectomy. I did need the hysterectomy, a life saver, still would have been good to know that years later my legs would end up massive and continually leaking onto already damaged skin. I hope the wraps help you, they do help many many folk, especially those that can’t wear stockings. Wraps are my last option, tried so many things over the years, at the moment the silver dressings seem to help. Wishing you the best of luck with the wraps and hoping you are one of the ones they really do help 😊
I had a hysterectomy in 1989 it took years but eventually once lymphoedema was diagnosed in both legs it was was attributed to having damage probably to the lymph nodes at the time
Thank you for the reply. Yes I believe after all the comments I have received that indeed I did get Lymph nodes removed all those years ago, just wasn’t informed and of course no proof now. At long last it makes sense, I hate the term “Idiopathic” I have had that so many times over the years, many times I just think medical professionals just can’t be bothered to get to the root cause. Anyway, thank you again for the reply I appreciate it 😊
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