At my wits end 😔

[Subaloo-bear]

Hi all, so glad I have found this page. Don’t know where to start but have self diagnosed myself with lipoedema. Too ashamed to go to doctors, appalled with my appearance which is affecting my every day life. It’s just getting worse and don’t really know where to turn or where to start..... but speaking with others who understand the problem is a revelation ! And finally understanding that I have a condition ( I believe ) and not just an odd shape is comforting.....

[lymphite]

Don’t be ashamed! Illness is not your fault! If a doctor is not sympathetic the problem is with him. Find a good practitioner and try to get help managing I’m in the US but I’m sure someone in the UK can help you with finding a good resource.

[Davida1998]

Please go to your doctor and get a diagnosis as there is although limited some help out there

[Barbaraella100]

Firstly you should sign up to Lipoedema UK. There is a lot of information on there. Also you need to talk to your doctor because you need to get diagnosed as soon as possible. On the NHS website there is information you can download to take with you.

Where do you live? If I can help you I will gust let me know. It is not your fault. Take care

Barbara

[SoSad45]

Hi..I’m sorry this is going to be such a long response but I was in exactly the same position as you only a few months ago and really want to explain my journey to you so far...I only found out about this condition in about June last year by reading an article in a magazine and also self diagnosed myself, I am also so ashamed and embarrassed of the way I look, I’ve spent my life dieting and could never understand why my legs never changed. After learning about this condition I joined lipeodema uk and was sent some very useful information, it then took me until September to pluck up the courage and go to the drs. As expected the dr had never heard of lipeodema and told me the way I looked was down to my lifestyle, she wasn’t prepared to read the information I had taken her and just said she had heard of lymphodema, she then referred me to the lymphodema clinic although I knew this wasn’t what I had! I walked into the clinic and straight away the nurse said to me you’ve got lipeodema...it was such a relief that somebody understood I just burst into tears...she was so lovely and understanding, she took my measurements and ordered me two pairs of compression tights. It was amazing to have somebody to talk to who understood. I then went to the lipeodema uk conference in Sheffield in October which is the best thing I have ever done..I met some lovely people all obviously with the same condition, I went to various talks etc and learnt a lot. I also got to speak to a surgeon called Mr Karri who explained all about the possibility of having liposuction to remove the lipeodema fat from my legs and arms..he too was very kind and understanding, I have since had a consultation with him and have decided to have surgery this year...i feel so relieved and so much more positive..I know it’s awful and embarrassing but please go to your dr..there are people out there that can help you, lipeodema is a terrible disease and I know I’ve suffered with depression, low self esteem and missed out on so much because of it but I’m finally feeling that something can be done..sorry I’ve gone on and on but I really hope it will help you just a little bit...good luck xx

[Trish4912]

I originally self diagnosed and went to my GP to ask for a referral to the lymphedema clinic. My rationale was that even if the GP was resistant to lipoedema, they couldn't deny lymphedema exists. I figured that once I was there I might find a sympathetic consultant. Anyway, my GP didn't know about lipoedema, but wasn't dismissive. She referred me to the vascular clinic in the end and the consultant there gave me an official diagnosis. I was quite emotional because I was relieved someone knew what was happening to me, but also, I had to deal with the implications of having the condition. I saw Anne Dancey last September and she confirmed the diagnosis. I'm having 2 ops on my legs and a brachioplasty this year, which is the only way to shift this weight.