Hi I’m a newcomer to the site!

[Suuz]

I’ve just recently even informed I have both lipoedema and lymphodema ( spelling may be wrong) any advice appreciated! Thanks

[Barbaraella100]

Good morning Suz. I to have both conditions and there is a fb page called Lipoedema private chat. You will get lots of help and advise. Also there is another page called Lipoedema Uk. I got lots of information from these ladies. Give it a try it will help as there is not much in the nhs world.

[Suuz in reply to Barbaraella100]

Hi thanks for this info. Yes it is quite concerning that you receive a diagnosis and then are casually informed ‘ there is nothing that can be done’ . So really it’s info and sharing of experiences and advice. Thanks again for replying.... it’s very encouraging and I will join the private chat.

[Barbaraella100]

Where do you live. I am in Hertfordshire and I am going to Mount Vernon hospital on Wednesday. So I can let you know how I get on

[Suuz in reply to Barbaraella100]

Hi. I’m near Edinburgh. Lipoedema uk are hosting an event in Edinburgh during November so I plan to go along. I think they are hosting events nationwide. I would really appreciate you letting me know how you get on at your appointment. Thank you and hope it goes well

[sooze23 in reply to Suuz]

get your GP to refer you to Mr Munnoch at Ninewells Dundee

[Suuz in reply to sooze23]

Thanks Sooze. What is his specialism?

[sooze23 in reply to Suuz]

it is actually plastics but he runs a lymphoedema clinic which includes lipoedema

[Suuz in reply to sooze23]

Thanks. Do I know if there is s lymphedema in fife

[sooze23 in reply to Suuz]

At Mr Munnoch's clinic (Ninewells Dundee) were people from all over including, Cumbria, Bradford and Glasgow but you could ask at your local surgery for a nearer one

[Suuz in reply to sooze23]

Thank you getting to Dundee wouldn’t pose a problem. I will ask gp at my next appt

[Barbaraella100]

Yes of course I am going to Sheffield at the weekend I will let you know about that as well

[Suuz in reply to Barbaraella100]

Thank you

[Barbaraella100]

Good morning Suuz. I went to the hospital yesterday and saw a lovely specialist nurse. She explain why l have Lipoedema and lymphoedema and what happens to our body. I am getting some made to measure tights and I am having test done. I am also going to have my legs wrapped and having electro vibration on them. She is going to arrange for me to be reconsidered from having my knee redone. Also a exercise specialist to see what exercise I can do and to see a dietitian to sort out what can eat. So all in all it was a brilliant visit. I feel relief that someone has taken me seriously at last.

[Suuz in reply to Barbaraella100]

That’s really positive. I have a few other things going on medically and they all seem to have come about at once. I have had osteoarthritis for a number of years in my hands . Now it seems in my knees hips and feet. Just now I am sitting waiting for a rheumatology appt . They are also investigating gall stones and a slipped disc in my lower spine! Honestly .... everything has come at once!!! However I consider myself tit and healthy and want to get on top of this lipoedema and lymphadeoma before it takes over!!! I really appreciate you messaging and I’m so glad I joined this site .

[Suuz in reply to Suuz]

Ps I am going to me measured for compression garments on Thursday

[Barbaraella100 in reply to Suuz]

You are welcome. I hope that you get the help you need but when you see the specialist about your arthritis he will say about you loosing weight so make sure you go armed with the info on lipo. If you can print out the nhs page on it and give it to him/her this will help. Good luck with it. I will also tell you what I fine in Sheffield over the weekend.

[Suuz]

Thanks. Luckily I’m not too overweight and doctors don’t seem to think I am. But I do think loosing a bit of weight might help ... even in my own mind . I don’t have rheumatoid arthritis thankfully . It’s just a bad sprain .... because of my hypermobility !!!

[Barbaraella100 in reply to Suuz]

Hi Suuz I went to Sheffield it was a long drive but it was worth it. There were a lot of people of various sizes and a lot of info on what can be done. There were specialist garment sales people who understood our condition. There was also a Mr Karri who does the liposuction. It’s not like the cosmetic surgeons. He uses a different method. I spoke to him on a one to one and the result was he would be prepared to help me. But there is always a but lol I would have to go private and the approximate cost would around £30.000. I just don’t have that kind of money. But my sister will only need one or two ops and that would cost about £10.000. Mine is higher because I have stage 4/5 Lipoedema and lymphoedema. So not a lot can be done for me. If you want more info on Mr Karri let me know. Have a good day xxx

[Suuz in reply to Barbaraella100]

Aw thanks for this info. I will definitely go to the Edinburgh event as I’m very keen to find out as much as I can. I’m not sure what stages I’m at. I’m sure however I have at least one of the conditions since the age of about 17. I’m getting measured for compression garments this afternoon so maybe the nurse can tell me a little more. The cost of liposuction is ridiculous ... and you are right ... there are always ‘buts’ . My very best wishes and kindest regards. Hope we can keep in touch. I’ll let you know how I get on. Hope you too have a good day. Weather not too bad today so because I’m on a day annual leave , we are off out for a walk with the dog before lunch x

[Sbluebam in reply to Barbaraella100]

Hi Barbaraella ,

I was so sad to read your post

I am going through all this at the moment too and I hate every bit of it , it’s totally soul destroying .

I have also spoke to Mr Karri and like you a huge price tag us out of the question however please look up Dr Rapprich in Germany he charges approximately £4,200 per session .

I am thinking of going there

I hate this condition and I think it’s utterly shocking that you get no help from the NHS.

I wish you all the very best

Barb x

[Suuz]

Hi. Got measured for compression knee highs. Going to give them a go first . I also got a sock stand thing to assist me in getting them on! Hopefully they will arrive soon.