New here, exploring options: HI, I've had lymphoedema in... - LSN

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New here, exploring options

DeborahS32
DeborahS32

HI, I've had lymphoedema in my r leg for just over two years (April 2016). Prior to that 2011 (and ever since) noticed significant swelling in r groin area. Onset of lymphoedema was sudden (over the course of a day), just in lower leg to start with, but now spread so is the whole of foot leg and some of lower abdomen, all on rhs.

No obvious cause of onset - no cancer treatment, infection, other trauma.

Wondering if the abdominal hysterectomy I had 2008 could possibly have affected lymph nodes in groin? the swelling there is v close to the abdominal scar.

Hoping to hear replies, but even if I don't, many thanks for reading. Only found this site a couple of weeks ago, and have already learnt so much from you all - a godsend, as my GP seems to know v little about lymphoedema and it's been a struggle to get a diagnosis.

7 Replies
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You need to ask for a scan to see just what is going on. Specifically a lymphscintigraphy, which is a dye test - it will pin point exactly where the failed lymphatics are. Where do you live? What options have you been told about by your lymphoedema clinic?

You could ask for either a dermatology referral or vascular - either consultant should be able to organise the right diagnostics. Failing that, a consultant referral to St Georges Hospital, to Prof Mortimer’s department.

DeborahS32
DeborahS32 in reply to Lynora

Thanks so much for that. I've already had a vascular referral and the tests they did showed that there aren't any vascular problems so they discharged me from their service. Last week I finally had an appointment at the community vascular clinic and was seen by a very knowledgeable and thorough specialist nurse. She is recommending my GP to ask for a lymphscintigraphy, but there isn't any consultant locally who can read it so has said I should have a referral to St Georges. I can see from St George's website that the problem with that will be that they only accept GP referrals from local GPs, otherwise it has to be a consultant referral. I've made an appointment to see my GP late this week by which time she should have the letter from the lymphoedema clinic - if you've any thoughts about how to move things on there I'd be most grateful.

Lynora
Lynora in reply to DeborahS32

Get your GP to have a chat with the vascular consultant - he/she should be able to refer you to St Georges.

DeborahS32
DeborahS32 in reply to Lynora

Thanks so much for that suggestion Lynora, much appreciated. The vascular surgeon I saw was very helpful (though he's not the consultant, who was much less helpful when I saw her last year).

DeborahS32
DeborahS32 in reply to Lynora

Your suggestions have been so very helpful - thank you! I've been back to my GP who has written to the vascular consultant asking him to refer me to St Georges, as no appropriate specialist service available in my area. The specialist lymph nurse has also written to him with the same recommendation. Am waiting now with fingers crossed hoping it works out.

The Lymphoedema Support Network (LSN), lymphoedema.org , has lots of information on their website and also a telephone helpline. In addtion, there is a patient conference in September for members of LSN.

DeborahS32
DeborahS32 in reply to AnneBury

Thanks Anne, I joined LSN a few weeks ago and have found all the info fantastic. It was through them that I found this forum. Such a relief to have actual hard info and support of others, after several years of not having a clue what was going on and (I now realise) being given the wrong treatment for the past year or so which has made things worse than they could have been. Still, moving on from here.... Am feeling so much better for knowing there is so much information around now I know what to look for and where to look.

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