Lymphoedema

Lymphoedema is swelling that develops because of a build-up of fluid in the body's tissues, which can happen as a result of cancer or its treatment. This is a place for people affected by lympoedema to share experiences and support each other.

Diagnosing lymphedema

Gemy
Posted by

Hi. I had a vulvectomy 5 weeks ago and all right nodes removed. My right thigh remains swollen and I am managing constant pain ankle to shoulder on right side. I am still very bed bound but try to stand and potter as much as possible. Fluid build up in right leg and hip. It all hurts and after any short period of time I find I have to return to bed and codeine mainly due to intense deep pain in thigh I am 47 and was up and about lots before the cancer ( ponies, farming). Any advice on at what point it becomes a lymphedema diagnosis and no longer post op? District nurses not really telling me much. thinking about seeing gp early Jan properly. Some of itt may be nerve damage.

latchbrook
Posted by

Hi

I'm sorry to hear that you think you may have lymphoedema after your recent operation. Although I can't answer your question I noticed that your post had gone unanswered.

It may be an idea to post this question in the vulva cancer group as well as I'm sure there'll be someone in that group who has experience with this.

Do you have a CNS assigned to you? If so you could give her a call today and explain your symptoms to her and I'm sure she'll be able to help further.

Wishing you all the best.

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Portlouis1
Posted by

Hi I’m week 10 post op after full right groin dissection also experiencing lymphodema symptoms . Please see your gp for a referral to lymphomadema clinic as the waiting time is 2/3 months . You May be able to seek a referral for physio in the meantime to help you . Good luck don’t wait seek your gps advice .

Pih58
Posted by

It takes time to heal from any op. I would suggest you speak to your GP and explain how you are feeling and ask is this normal  after your type of op and if so how long before your body heals. Anyway can I ask why you think what you are experiencing is lymph. I at one time suffered badly with lymph but its under control.

Portlouis1
Posted by

Hi Happy New YEAR.Thankyou for responding .Iwent to see my Gp mid December as although i know it takes time to heal and i know that i have permanent numbness in my right upper and left upper leg ,my right leg is very tight ,painful and swollen .It is the most debilitating part of my condition at the moment.The nearest lymphomadema clinic is over 45 miles away with a2/3 month waiting list .cut backs !So ive requested physio to helpin the meantime .IVe also just started immunotherapy over 46 miles away so logistics is an issue !IIm 10 weeks post op for full right groin dissection ,recurrent melanoma. Good to hear that your lymph problems settled ,Hoping that mine do too as im very limited at the moment but thankfull to be alive !

Pih58
Posted by

Yes I an 12years since my op. But I still get the odd attack of lymph. Do you know that   MacMillan have booklets that you can download which are excellent. I have to admit though that the 6GPs at the surgery I was with they all said rubbish it was not lymph. A consultant I was seeing had seen lymph in the legs before. But my GP still said rubbish. Then I attended a six week course that MacMillan held in our local health centre which they had a lady from a local hospice. Spoke to her. I was in so much pain and by this time needed two walking sticks. When walking my legs felt as if they had s ball and chain attached to them. There were other strange feelings going on in my legs. Anyway I changed my doctors surgery and questioned if they knew about lymph

Felt I had won the lotto as the answer was yes. Within two weeks I was seen by a lymph nurse . She confirmed it was lymph and my journey to getting better  began. Some ,nerve endings attached to my bladder were damaged during my opp. It meant that my bladder was leaking all the time. The first GP said I was now incontinent and I could have a repair op with mesh or wear pads. I cried. Guess what new GP sorted the problem. I take a tablet a day problem solved. One problem a lot of us face is GP understand nothing about lymph the other thing is you go to see a consultant for another problem to be told you have lymph in your legs tell your GP it needs treating. Well I passed the message on only to be told rubbish. So do not give up. If your GP can't help demand a second opinion. Its your body. Have you not been through enough. Its disgusting what you are having to go through. Have you had your legs measured and special stockings given to you. That the first thing that happens. Tell me how you get on. I have lots of tips that my lymph nurse and people on this site have given me. Take care. Pat

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Portlouis1
Posted by

hi and thankyou for the information .have been making enquiries for a specialist in our area .very limited but intend to persevere.ill keep in touch.

Pih58
Posted by

Ask at your local hospice. When I attended the six Macmillan meetings there was a lady from the local hospice there who was very helpful. Please keep in touch if I can be of any help I am here. No joy with your GP then you are entitled to ask for a second opinion. You need it sorting as soon as possible. Take care Pat

Portlouis1
Posted by

thankyou you are very helpful  . 

Pih58
Posted by

Ask at your local hospice. When I attended the six Macmillan meetings there was a lady from the local hospice there who was very helpful. Please keep in touch if I can be of any help I am here. No joy with your GP then you are entitled to ask for a second opinion. You need it sorting as soon as possible. Take care Pat

pat2
Posted by

Hi Pih58

I was wondering if you know where I can download the booklets yu mentioned. I have been diagnosed last week with lymphedema of the breast, very painful and some skin with orange peel look. I have been sent home awaiting referral tat ay take time. Its so worrying not knowing what to do. Any tipswould be gratefully received I am 5/6 weeks post radiotherapy.

stonedcold
Posted by

It might be worth going to the lymphodema clinic just once as in that session they teach you how to do it yourself and give you diagrams of where the lymph nodes are and how to redirect fluid. 

Pih58
Posted by

Well you can download the booklet of MacMillan site or look for when in your area MacMillan are at your local hospital 

pat2
Posted by

Will definately do that. 

x

pat2
Posted by

Ok thats great thanks. 

Thanks for advise

x