Private

Hi Summer

Perhaps give the Support line a call tomorrow and ask for some advice. 

If you give them the area where you live they should be able to have a look for you. I did do a search for private lymphoedema clinics and some did come up but in different places. 

I wonder also whether it would be worth contacting BUPA

Jane

Thanks so much Jane. X

My husband was on a NHS waiting list for his horrendous lymphoedema in his neck which was making it difficult for him to breath, swallow and talk.

One of the lymph nurses also did private treatment, so he saw her.

So maybe ask the lymph clinic if any of them do private treatment.

Hi Mrs VT,

Thanks so much. My appointment came through for May! So much for dealing with it early! The Accelerate team called me but had no private contacts. I honestly feel like I've been abandoned. I'm in pain with it as it's in my lower stomach/groin too. I've lost my new job over it. I've never been unemployed in my life. Mentally, I'm very low, not sleeping and now getting a weird vibrating/trembling in my vagina (sorry tmi lol). As I have a clot that I'm being treated for I feel gp, anti coagulation and now accelerate (lymphrodema service) are all passing buck to each other. I should be happy looking forward to Christmas cancer free (was on treatment over last Christmas) and I feel worse than ever. Sorry for rant, just all came out when you replied knowing how awful this is. It sounds horrendous for your husband, at least mine's not affecting eating or breathing. I do hope your husband is getting all the help he needs. Take care x

May! Blimey that’s terrible!

My husband’s NHS appointment was a 3 month wait. 
Then one of the senior lymph nurses saw him in the street and couldn’t believe how bad it had got so quickly. 
She literally did not recognise him. 
She fast tracked him but was still a 4 week wait so she saw him privately twice a week.

There are quite a few private clinics in London. 
We explored this avenue but then saw the above nurse. 
If you google private lymphoedema clinics near me, you should get a few hits.

It’s utterly disheartening when different medical teams should be talking to each other instead of pulling together for their patient. 
Look on the forums here and join a chat group. 
They are invaluable for venting and advice!

Sadly I have had to join the bereaved spouses forum as my beautiful husband was torn from me 6 weeks ago. The forum has saved my sanity.

I hope all goes well and you find someone to help quickly.

Sending hugs x

Oh Mrs VT, I'm so very very sorry to read this. Thank you so much for replying to me when you are going through this awful time. I send you love and thoughts and am so glad you've found support on the bereaved spouses forum. Thinking of you, take care. Summer xxxxxx

Hi Summer,

I actually saw a locum at my GPS who said she knew nothing about lymphedema!!!!   I sent another message to the doctors insisting I saw someone who knew about this. (Wrote in Capital letters!!!) I then saw a lovely nurse who knew what she was doing. She measured me for new stockings and is now seeing me every fortnight until I get the right fit. She changed me from knee high stockings to full length and it has made a big difference. She said the leg was holding on to fluid. 

Don't give up. There may be someone at the GPs who can help you.

Hi NannyAnny,

It does seem (or at least how I feel) that it's a case of "well, it's not cancer, it's not going to kill you, get on with it". Maybe that is right but I am still dealing with the emotions of having cancer in the first place - strange as I was fine through treatment, it's all coming out now. How are you getting on with your lympheodema? I have a lot of pain in my groin and pain in leg but this could well be the clot. Funnily enough, today is the best I have felt so fingers crossed I am turning a corner with the clot. I am not happy about the swelling but it is something I will learn to live with, it's the mobility I am finding hard to deal with. I am very active so it is getting me down. I have had to go to a Spire Hospital for help. I am seeing a vascular consultant on Tuesday and they will refer me to someone from there. Thanks for your reply. Keep well. Summer xx

Hi Summer,

I don't know how long ago you had your operation or treatment. My lymphedema only really got bad enough to see anyone a couple of years ago. I had my operation 8 years ago.

Initially, after the operation, I had all kinds of queer feelings in my groin and stomach. Having previously had shingles I knew it was nerve endings knitting together. I think it took me about 3 months to feel anywhere near normal. I was 72 at the time. And I didn't have a clot to deal with.

I have found the compression stockings help me, and if they help control it, I'll wear them. Maybe I have been lucky, but the lymphedema hasn't stopped me doing anything. Let us know how you get on, and hope you feel better soon.

Hi NannyAnny,

I have just read your profile, please feel free to read mine x You have certainly had a lot to contend with, with yourself and your family. I hope you are all doing well. It's great the lympheodema is not affecting you that much - I do wonder if this is why no healthcare professional seems to be taking much notice of me re the swelling, as they are not quite sure what it is. 

So, no,my op was September 2023 but I do have kidney stent replacements every six months, the latest one in September just after I had come home from America. It's funny you say about nerve endings as I have  nerve type pain as well as the internal stabbing pain. The nerve type pain goes from the crease of my thigh but also on my labia up to where the stabbing pain in groin is. The burning pain is also exactly where my clot has been located. I am a mystery to doctors at the moment and as I say, I am desperate for some compression garments to help with the swelling but neither my GP, DVT clinic nor the Lympheodema people I have contacted with take any responsbility in issuing them - hence me going private, which to be honest, I can't really afford and feel annoyed that I have had to resort to this. Anyway, that's another story regarding the NHS. 

Thanks so much for getting back to me. 

Summer x