Newly Diagnosed

Hi guys, I have just been diagnosed with Lymphodema and not dealing with it very well. I was originally told by my GP i was just fat when i mentioned how large my legs were in comparison to my size 10 top half. I am unsure how I deal with this and trying to find some stockings that are level 2 but look like normal hosiery and don't cost around £80 which is all I have found so far. I wear thick trousers as part of my work uniform and need the thinner ones to not fell to hot and sticky all day. I would appreciate any advice on dealing with this as I have to wait to be referred to a clinic which is going to take a few months. Thank in advance guys I really do appreciate it.

11 Replies

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  • Sorry to read of your diagnosis, it may be worth ringing the LSN, and speaking to someone there, maybe getting them to post you some of the relevant information leaflets, good luck xxxx

  • Thank you, I really am struggling with this diagnosis 2016 not been the best of years and this has just knocked me for 6.

  • Sounds as if your doctor missed out on charm school, what cheek! Hope you manage to find some suitable stockings.

  • Same one as told me I had dry skin 3 years ago just had skin cancer dug out my back as well that's been growing for the past 3 years. Luckily for me was BCC.

  • If you don't mind me asking - what is BCC?

  • Hi jacqs1967 - if you have waited this long, don't spend huge amounts of money on compression that may not be appropriate if bought off the shelf, when you will be measured and fitted with garments at the lymphoedema clinic. Has the lymphoedema been diagnosed by a consultant or your GP? Was lipoedema mentioned?

  • Hi Lynora it was disgnosed after a CT scan and a doplar ultrasound by a Vascular Surgeon. Nothing said about Lipoedema what's that ?

  • It came to mind when you said that both legs were affected, but not your upper body. Do you have vein problems? Have you had surgery?

    Have a look at lipoedema - lipoedema.co.uk - sometimes the symptoms are very similar.

  • The scan and ultrasound showed all veins perfect and swelling happens during flying or standing long periods previously treated with water tablets and help reduce swelling. Surgeon said caused by my Endometriosis and the 3 lots of abdo surgery I have undergone over the years. But as no treatment he can offer has passed me onto the local lymphodema clinic, just waiting on my appointment now.

  • Hi Jacqs,

    I have both demas. Secondary Lymphoedema after breast cancer and was diagnosed with Lipoedema by Proff Mortimer at St George's Hospital when my Lymphoedema proved very tricky to treat.

    I was size 8 top and a 12 plus below the waist with very straight legs and slightly heavy legs until about the age of 50.

    My Lipoedema didn't really show itself until the menopause though . Th condition is hormone sensitive so it often make it's presence more obvious at puberty or pregnancy as well.

    As others have said get in touch with LSN but don't buy any hose until you get a clear diagnosis. Worth spending £15 a year to join.

    I wear compression garments on all 3 limbs now but there is much that can be done to help yourself once you have a firm diagnosis and a care plan in place.

    I am a member of

    lipoedema.co.uk

    and have learned a great deal from them. I want to their recent conference, which was my third and always learn something new.

    Importantly, they like LSN offer GP's and other medics an online learning module which your Dr needs to undertake quite urgently it appears.

    The module is accredited by the Royal college and counts towards their yearly learning tariff.

    Hope some of that is helpful and I wish you all the very best.

    Sometimes where you live impacts upon your standard of care but there are usually ways forward to be found.

    Wendy

  • Apologies I see you have alreAdy been signposted to Lipoedma UK..

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