I finally had my results for my Lymphography. I have been told that I do not have Lymphoedema. Yes, it's a big relief, especially after having to wait nearly 3 years to get to this point. But I now need to find out what is causing my swelling/bloating from my middle and down through my legs. I have been told its not water retention. I know, for me it's good news, but I'm back to square one. And this may sound silly, I don't feel as elated as I should because of not knowing what's going on. Time for another battle with the doctors. Please don't think I'm sounding selfish as I know there are so many of you worse off then me, but I hope you can understand my frustration with it all.

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20 Replies

  • Hope you get a diagnosis soon x

  • Did anyone use the term 'lipoedema' during any of your consults?

  • No. But with all the research I've done I think this is what it could be. Am seeing my doctor next week so hopefully she can help give me some answers. (fingers crossed)

  • Recommend you have a look at - also there is a patient group - - lots of information you can print off and take with you!

  • Just a thought, but someone I know also thought she had Lymphoedema, but saw a new Consultant last month who sent her for blood tests as he suspects it might actually be gout. Apparently it's not about drinking, but most people inherit this, and her mother and grandfather had this. She is waiting to find out, but am not sure if gout is better than L !

  • I've had all the necessary blood test recently to rule out loads of other things and its not gout or anything else that they thought it might be. Thats why I think its quite likely Lipoedema. Seeing my dr next week so hopefully might get confirmation, If its Lipoedema then at least I can get it treated.

  • Also, if it's Lipoedema and not gout, you won't have stupid friends think they are being funny over drink.

  • They are not your friends, would it occur to you to make fun of a cancer sufferer, they are ignorant and without empathy.

  • Thanks for this, and you are right.

  • Good Luck. Hope you get a diagnosis soon.

  • I understand how you feel. I think it is always better if you have a definite diagnosis - good or bad - as something can then be done to try and help. Hope you get your diagnosis soon. Best wishes xx

  • You don't sound selfish at all. It's just frustrating that ruling out things/getting a diagnosis takes so long. Good luck with the next stage of your diagnosis! x

  • I can totally understand how you feel Angie. I' m waiting to receive my first hospital appointment and I' m praying I' ll be told I dont have lymphoedema.But then youre left with the baffling question,"Well, if thats not the problem,what is? "

    I recently lost six stone that I put on because I was so inactive due to having ME/ chronic fatigue syndrome. Ive lost the weight thru a strict very low carb diet,and look quite slim now - until you get to the pads of fat in front of my knees and around my ankles. No weight has shifted from there,and it looks odd as everywhere else,I' m slim again. I dont have any pitting,or shiny skin,or itchy skin which ive seen mentioned a lot when i read up on this problem.But if it isnt lymphoedema,what is it? I can relate to both yr relief and to yr frustration,but it doesnt mean we dont also empathise with the problems described by other members on here x

    I hope you get sorted out! And i hope for a brighter future for all of us struggling on here X

    Ps ive just read the other replies and want to thank those who mentioned lipoedema as i havent heard of this before and can now go and look it up X

  • Like you I also have M.E. Not overweight. Been 8st for most of my adult life but with all the bloating/swelling round my hips and legs, have gone up 2 dress sizes with no weight gain. The only thing I can think of it is Lipoedema. I have looked into it and I know I wont get it done on the NHS so I'm going to go private and have Vaser Lipo done. But I want to make sure thats what it is first. The heaviness I'm carrying around does not help my M.E as its making my fatigue worse so I can sympathise. Good luck in getting your appt. Make sure you chase it up cos you could end up in someone's 'in box' for quite a while :) x

  • You are describing Lipoedema with fat pads around the knees, unable to lose weight below the waist and it is usually described as a 'bracelet' effect around the ankles with slim feet. Please don't expect to get a diagnosis easily from the hospital (it depends which specialist you are seeing) as there are few health professionals who recognise Lipoedema. Inform yourself before you go and see if you recognise the condition by using the Lipoedema UK website. Self diagnosis is not always the best way to go, but with Lipoedema you may be the only one who has heard of it. The Lymphoedema Support Network or Lipoedema UK will be able to tell you where your nearest clinic is located. All the best.

  • Yes make sure before you spend out on expensive treatment. I will look into that too. Thanks for the heads up,have never heard of it. Sorry to hear you have ME too angie..what a horrible life limiting illness it is. I' m exhausted today after attending a short but noisy meeting in the retirement flats scheme where i live back in my apartment lying down,whereas the other tenants,most of them quite a lot older than me, are still fresh as daisies,eating a communal lunch and dancing and celebrating Saint Patricks Day! Good luck to them, i just wish i was able to join in! X

  • I know exactly what you mean. It's no fun when you can't join in with things. And you get people thinking that you are not wanting to be sociable. Don't know about you but I don't bothered explaining. As long as my family and friends understand, thats the main thing. Good luck on your journey to finding the answers. Keep me posted. x

  • It's certainly not selfish to want/need to find out what is wrong with your health and to try and find out what the problem is. You already have had to suffer a long wait to no avail. Don't know if you have put your symptoms onto your computer or I- pad etc and see what the possibilities are, if not try it, or even the Lymphodema website. Keep pushing your doc for answere along with a specialist who deals, with these symptoms. Best of Luck Angie.

  • Lipoedema training module available for health proffessionals in the UK.

    No cost to them and it counts towards their yearly learning tariff.

    Suggest you contact Lipoedema UK and LSN and request fact sheets asap even if you aren't a member so you can take those to your medical appointments.

    I have dual diagnosis and yes I feel horrid some days but mostly I get on with life and enjoy things just as much as I did before the double whammy of Breast Cancer and Lymphoedma.

    Much can be done to help Lipoedema but please learn as much as you can.

  • Hi Angie yes I know what you mean, a relief on the one hand but frustrating on the other at the thought of further investigations. Hope they manage to help you out soon

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