Diagnosed today with lipoedema : I have met... - Lipoedema UK

Lipoedema UK

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Diagnosed today with lipoedema

Zoestevens profile image
8 Replies

I have met with Dr Karri today in East Yorkshire he has diagnosed me with lipoedema. I feel like crying after spending so many years trying to lose weight from my cold, lumpy legs. He was amazing and spent an hour discussing the condition its symptoms and treatments. I feel relieved to read others out there are experiencing the difficulties in getting gps to acknowledge that there is something medically wrong with my legs. I'm 5,7 and 154lbs I'm only slightly overweight and excercise regularly yet nothing makes any difference. I am considering going for lipo later this year as Dr Karri has produced great results and I'm hopeful for the first time in years that I could be pain free and not feel deeply self conscious and ashamed of my legs. I am only 40 and never wear skirts my legs are covered in trousers all year round. I'm hoping to go back to my Gp once Dr KArri has written to him.

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Zoestevens
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8 Replies
pollyslymph profile image
pollyslymph

So good to hear that you found a solution with Dr. Karri.....he seems very passionate about his work and I am looking forward to a consultation for my lymphadema. I always had heavy legs from a child but just accepted it....and like you never loved them. Now that breast cancer has compromised my lymph system I am wondering if my body was a ticking time bomb.....I am grateful that the cancer helped me to get my body in a healthier state, and came as a gift in many ways....so hopefully i can tackle the issue of lymphedema in the same way and inspire others who are suffering the consequences of cancer, it's current treatments and those people who are oblivious to how important their overall health is. Thank you and keep us posted on what your GP says.....It's the voice of the people that will make the changes we need!

LynRay60 profile image
LynRay60

This sounds so much like my experience, I met with a lovely (private) consultant in Hampshire called Dawn who was so sympathetic I cried at the end of the appointment. Finally someone who could tell me that I wasn't just fat with huge legs - that there was a real problem. I'm nearly 60, quite active and have had this problem since my late teens (when I think back). It's getting worse as I'm getting older and I really hate my legs so, like you, wear trousers or long dresses in the summer to hide them. Hope all goes well with your GP....

Zoestevens profile image
Zoestevens in reply to LynRay60

Many thanks for your reply I am on holiday at the moment and I am amazed at how many other women I have noticed with legs like mine. It's such a shame we are all having to go private as gps don't seem to acknowledge or recognise this condition exists. Kind regards Zoe

jack56 profile image
jack56 in reply to Zoestevens

The doctors I've seen think it's just fat and if I carry on losing weight it will go,but it's different to the usual fat,if they were to look closely they would see all the tiny veins.I have even seen an Orthopaedic Surgeon as I need replacement knee surgery,he seemed to think it was just fat.Its like knocking you're head against a brick wall.

jack56 profile image
jack56 in reply to LynRay60

Hi,I'm also nearly 60 and live in Hampshire.Have always have problems with my legs.Have recently had weight loss surgery and having also lost weight by myself in the past,never losing any of the fat off my legs.So very depressing,I was so hoping my legs would get better after surgery but no 14/16 on top 20 on the bottom,never feel I look nice,can see my legs wobbling when I walk even in trousers and makes exercise uncomfortable.Is it possible you could let me have the name of the consultant that you met with.I paid to have weight loss surgery not sure I could afford the liposuction privately but would love to talk to a doctor that understands my situation.Hope you don't mind me asking but I'm sure you know I get so desperate.x :/

LynRay60 profile image
LynRay60 in reply to jack56

Hi, I can really understand what you're going through and I'm only too happy to help if I can. The person I contacted and who diagnosed my Lipoedema is Dawn Heal, a lovely sympathetic lady who is a qualified nurse in this field. Dawn works from The Hampshire Clinic in Basingstoke and this website will give you her contact details. It really is worth contacting her. I have been told by my GP and my local Care Commissioning Group that I can't have the compression hosiery on the NHS, Dawn is now challenging this decision so I'll keep you posted too as this makes a real difference.

Natz25 profile image
Natz25

Positive news with your appointment :-) I have just been reviewing his website and he seemed very well informed at the annual lipodema ladies meeting last year.

I have stage 2 and my mom has stage 3 , trying to use my compression tights but so uncomfortable And especially in the warmer weather. Good luck moving forward keep us posted :-)

Lippyloulou profile image
Lippyloulou

Hi all

I've just been diagnosed by the Lipoedema specialist at the Oxford lLymphoedma clinic at the Churchill Hospital. I am stage 1. I have been ordered 2 pairs of lovely frilly toeless compression stockings from Germany on the NHS. 2 pairs per year we are allowed. And a choice of colours.

If you are considering a private consultation for liposuction you should join Maria's Facebook page who has pictures and contact details of all surgeons who specialise in lipoedma. It's called My Lipoedema Journey - For Ladies Globally

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