I have just been diagnosed with Lyphedema.How long will I have to wait for treatment

[alibali02]

Can anyone please tell me as to how long I will have to wait to recieve treatment on the NHS, I live in a small village approx 40 miles outside of Glasgow.

Many thanks in advance for any help you can give me. xx

[Hidden]

Hello I am new to the forum but I was referred to my hospital Lymphoedema Clinic in November and was seen last week. My next appointment is in May.

[alibali02 in reply to Hidden]

Thank you, at least I now have some kind of time line now. Xx

[Wollyhat123]

My daughter was first treated for LYMPHODEMA six years ago. She was given NHS stockings and gloves and shown how to do MLD (manual lymphatic drainage). It now transpires that it is LIPODEMA instead. She cannot manage to get the very tight stockings on and has been told that there is no other treatment for Lipodema, so I will keep looking on this site in the hope of finding something helpful for her that she can manage. She gets in so much pain it is unbearable to see her suffering.

[alibali02 in reply to Wollyhat123]

I am so sorry to hear about your daughter, I hope that she receives the treatment that she truly deserves xx

[Hidden in reply to Wollyhat123]

I am so sorry to hear that. I am just coming to terms with my Lipoedema diagnosis too. It's a journey, that's for sure.

[MoonMama in reply to Wollyhat123]

She may have the wrong type of stockings, or even the wrong compression. I have stockings for Lipolymphoedema - I believe they are woven in a different way to those which are intended for use in the management of Lymphoedema alone. It would be advisable for your daughter speak to her Lymphoedema nurse about different types of stockings. Good luck

[Rosesibbs in reply to Wollyhat123]

Hello sorry to hear about your daughter as you have been told most probably.. It is generic condition and at worst cases the pain is extremely unbearable. I always recommend a light compression stocking. Sadly there is no evidence that MLD is beneficial as we are looking at fat factors and not fluid. No exercise or intensive therapy can greatly improve the condition also it will be extremely uncomfortable. For my patients, I recommend Sigvaris Diaphane Class 2. This is a French classification and has low Hgmm it is desirable as she is young as it looks like a normal silk stocking as is socially acceptable. There is a fantastic video on You Tube that was set up recently by High Lymphoedema Pioneerers including Pelier. I will post it in the near future if I can work this out. Lipoda if not controlled will progress to Lipolymphoedema. Hope this helps....

[Wollyhat123 in reply to Rosesibbs]

Many thanks for your response. I will definitely get her some sing arks stockings to try and look forward to seeing your video, you have been so helpful

[Wollyhat123 in reply to Wollyhat123]

Stupid machine, should have said stigvaris - not sing arks!!?

[Rosesibbs in reply to Wollyhat123]

I know... I also saw many typo errors in my response. Glad to help. Will do send the link for the video also will look at the new innovation of the oscillation machine normally called the vibrator if it is helpful for lipoedema - I did the training last week and it was absolutely fantastic for pain, scars and oedema. It is new and I am very hopeful that it will break through

[Hidden in reply to Wollyhat123]

I have made to measure tights for Lipoedema. I have heard that referrals can be made to St George's Hospital (London) but don't know on what basis they are made. Am beginning to think I have Lipo-Lymphoedema as my feet are now beginning to swell too.

[Wollyhat123]

Thank you both, just hope something pops up on here to help. I was wondering if circulation booster machines might help, but until I hear if anybody with lipodema is having good results, I will wait a little longer. I do feel for you both and anybody else with this terrible affliction. I really hope relief is soon found. Take good care

[Wollyhat123]

Hi moon mama, thank you for that information. I did not know they were of differing types. She was never given different stockings after they decided it wasn't lymphodema. She does not have regular contact with the Lymphoedema practitioner after being shown MLD, we were left to our own devices, so I will definitely make sure she gets back in touch to see if any easier stockings can be prescribed. You might be wondering why I make her decisions, it's because even though she is 44, she is also autistic, so trying to get her " big, painful legs" into ill-fitting garments is too much for either of us. Once again, many thanks for your helpful suggestion. Hope the other lovely ladies are finding some relief.

[Rosesibbs]

The name of video is "fat legs and all" hope you do find it