Not sure I belong...no diagnosis 😕

[laurasmith]

Hi. I am new to this forum. I don’t even know if I belong here to be honest but I’ve read so much about lipedema and lymphadeno that I feel I ‘fit’ some of the symptoms. I have never done anything about it like visitng my GP or discussing it with anyone, but on the odd occasion a massage therapist has mentoned that my ankles are very swollen or a consultat who was treating a varicose vein on my leg described my lower leg as ‘heavy’ so I’m aware that something just isn’t quite right. I’ve always had ‘heavy’ legends like my mother and I just accepted that it was my shape but I do wonder if there is more to it. I am so out of proportion with a very slight upper half but have always had a heavy set lower half. My legs have always Brennan’s sensitive to touch and they are extremely dry and itchy. My feet are ice cold all year round!

I don’t even know what steps to take as I think if i go to my GP, they’ll laugh at me for complaint that I have a heavy set lower figure and tell me to diet and exercise.

Please advise me if you have felt similar or have any words of wisdom.

I do appreciate that my sumpotoms don’t seem as extreme as some I have read about.

Thanks

[Sbluebam]

Hi Laura

The first thing you should do is get your gp to refer you then you will know exactly what you are dealing with .

It has taken them 37 yrs to give me a diagnos so it’s not so easy

I am average on the top but my legs have always been somewhat heavy and no amount of diet or exercise helps them .

I wish you lots and lots of luck

Take Care

Barb x

[sooze23]

get as much info as possible eg how you match the symptoms and present to your GP. If GP is sceptical then do so until agree to do something. I had to work with my GP as he had no idea of where to go to with it and wasted a year before between us we found a route. Best thing was being told I was a classic case of Lipoedema as it proved I was right and that little thing made me feel better as even friends and family were sceptical when I mentioned it - rolled eyes etc.

[Hidden]

Hi,

As others have said you are your own best advocate. Learn as much as much as you possibly can so you feel confident when you see your GP.

Join Lipoedema or Lymphoedema UK both of whom have excellent information and offer GP learning modules.

Take their newsletters into your practice, photos of your relatives with the condition and note down any anecdotal family "evidence."

I have secondary Lymphoedema complicated by Lipoedema. I have always had heavy, straight, legs on a small frame.

I was diagnosed with Lipoedema by Professor Mortimer from St George's because my Lymphoedema didn't respond to conventional treatments.

My Lipoedema didn't really show itself until after the menopause so in that respect I have been fortunate.

I was diagnosed with BC in 2003 and Lymphoedema quickly followed so all 3 conditions arrived within a few months of each other !

Good Luck with it all.

[tdshrubb]

Like you I had not been to my gp. But I armed myself with information to take with me, found and contacted the nearest lipodema/lymphodema clinic and asked their opinion, then asked my gp if he could refer me there for assessment. Wish me luck I have my appointment on 8 December. You have to take the bullet and fight for yourself

[laurasmith in reply to tdshrubb]

Good luck with your appointment I’m December. I’m

Not sure if there is a Lipödema clinic anywhere near me unfortunately but that is a good idea to get their opinion first.

I’m going to just give it a shot with my GP and hope I get a sympathetic one 🤞🏻

[tdshrubb in reply to laurasmith]

Hi Laura, where are you based? Ask to join Talk Lipodema on Facebook, there are loads of us on there in the same boat, and everyone will offer you advice if they are able x