Hi Everyone, I was finally told yesterday by Dr that the results of US scan showed lymph damage after R/therapy 8 years ago.

[SuziSue]

He did call it Lymphedema but said the compression hose and painkillers I am using were all thats available except tighter hose that are painful to wear, and thats IT. After looking up on internet and seeing all the other things available I am now wondering why non of this was offered.? He didn't even mention looking after my skin in case of infections. Did any of you have to fight for treatment or was it freely offered?

[Lynora]

Hi SuziSue - are you based in the USA?

[SuziSue]

Hi Lynora

Thanks for replying,

I am from the UK, I am in full time employment and pay full NI.

[Harlequin2112 in reply to SuziSue]

Hello

If this was just your GP then many are not fully aware of what is available. Asked to be refered to a Lymphoedema clinic where you can specialist advice and support.

[Lruk]

Hi Suzisue, I have found all of the doctors in my GP practice to be very ignorant of lymphoedema. Even the consultant that diagnosed me was useless. He told me what it was, that there was no cure and that I would have to wear special stockings and that was it! Luckily the nurse that was looking after me post op when I was diagnosed was more on the ball and referred me to a specialist clinic.

You may need to nag and pester to get the referral and it can take time but it will be well worth it. Not all treatments are suitable for all patients, as with any condition, but at least you will get to find out what is right for you.

Like you I have compression stockings to wear and have to take painkillers regularly but things are improving slowly, and I am seeing the right people to give me the answers. Good luck with your future treatment.

[SuziSue]

Hi Harlequin and Lruk, thanks for the replies.

I will go back to Dr's armed with all this and ask for a referral to the clinic at the hospital. not asking for a miricle, just less pain and easier walking.

[morganite]

treatment is basically compression and skin care, other treatments like physio dont come on nhs, Ive been managed at gp level and assessed by community tissue viability team, i have to have yearly ultrasounds, I ve never been refered to a specialist clinic dispte trying, at times i feel we are supposed to manage this ourselves, my husband knows how to apply my compression bandages if i get a flare up, otherwise its lymph grade compresssion below knee stockings. theres alot of advice and leaflets available on the website too, good luck,

[PaddyZ]

Hi SuziSue, where are you based? I was diagnosed with lymphoedema in my right arm following a mastectomy, chemotherapy and radiotherapy for breast cancer. I was living in Australia at the time where they provided made to measure compression garments, and fairly regular massages by a specially trained physiotherapist (also had laser therapy but don't know if this works as only had it once before I decided to come back to the UK). In Australia I was also taught how to perform my own LMD massages, and my partner was shown how to do it too. Since coming back to the UK I only get measured regularly and get repeat prescriptions for the compression garment. At my last visit they have now provided me with a made to measure garment, which I find is much better. I attend the Royal Marsden in Fulham. In my experience here in the UK only 1 GP did not know what lymphoedema was. I have to get my compression garments prescription through my GP now and I was told we are allowed 2 garments every 6 months. I still get measured by the lymphoedema specialist though at the Royal Marsden Lymphoedema Clinic.

I believe you should be able to get your GP to refer you to a clinic nearby. I don't see any reason why your GP can't do that.

Good Luck

[SuziSue]

Hi All, thanks for your replies. I went back to my Dr with sheets I'd printed from the internet and asked for a referal to the Lymphedema clinic -- And he said YES. There is an aprox 6 week wait so I'l carry on with the compression hose and let you know how it goes.