Lymphodema

[Crafter62]

Hi. I have stage 4 ovarian cancer and now have in both legs lymphodema. I am finding the lymphodema more testing than the cancer as it from my toes to my waist and back and is very difficult for me to walk as I can't straighten up. I have had to have a stair lift to manage the stairs and a wheelchair for when I go out. Has anyone else with this combination have any tips to pass on. My legs are constantly swollen and heavy and I am finding everything such an effort. Any help would be appreciated. I have been prescribed compression wear but hasn't helped in fact think they made my legs more uncomfortable.

[Lyndy]

Hello Crafter62

I also have lymphodema in both legs.

You don’t say what sort of compression you have and whether you have access to a proper lymphodema clinic.

In my experience GPS are not good at lymphodema. A good lymphie nurse will have a range of options for you from manual drainage to wraps and flat knit compression garments.

Walking is the best thing for your legs but I get that this is really difficult for you at the moment.

Best of luck xx

[lesleysage]

Hello Crafter62,

I agree with Lyndy about the NHS specialst lymph nurse - and also I have paid for a specialst independent lymphoedema practictioner who has taught me simple manual lymphatic drainage techniques. I found her through my NHS Nurse specialist and the British Lymphology Society. She charged me £20 per hour for a 2hour session and I needed about 4 session to enable me to 'go it alone', but you may learn more quickly than I.

She also told me of a recently formed organisation, Lymphoedema United (lymphoedemaunited.com/) which is a charity registered in England. They are free to sign up to and you may find useful contacts and information from specialists.

Good luck. Warmest wishes. xx

[Fika500]

It must be really tough dealing with such severe lymphoedema. Most GPs have very little understanding of Lymphoedema. You need a specialist nurse - NHS specialists are available in some places. It is possible to get lymphoedema under control with compression, wraps, manual lymphatic drainage , simple lymphatic drainage and movement helps. The Lymphoedema Support Network is a registered charity . They can provide helpful information and support.

02073514480

lymphoedema.org/

Good luck. I hope you get some appropriate treatment soon.

[OvacomeSupport Partner My Ovacome Team]

Dear Crafter62,

I'm sorry to hear that you have been having such a difficult time with your lymphoedema. Several of our members have already posted very helpful responses.

Fika500 has mentioned the Lymphoedema Support Network in her comment. This organisation are experienced in providing support and advice to anyone experiencing lymphoedema and are experts on this condition, so are certainly work connecting with.

Additionally, you can access the recording of a webinar which we hosted on managing lymphoedema with Karen Friett, Chief Executive of Lymphoedema Support Network. I hope that this will be helpful in providing some information and suggestions, as well as hearing the responses to questions asked by members of our community who also have the condition. You can access this webinar here: ovacome.org.uk/living-with.

Our support team are here for you. If you have any particular questions, or anything that you would like to talk through, don't hesitate to get in touch. We're available via our support line (0800 008 7054) or you can send us an email: [e-mail]. We're here from Monday to Friday, 10am to 5pm.

Best wishes,

Alice - Ovacome Support

[Trickysite]

Dear Crafter, sorry to hear you are in such a pickle. My first pair of compression socks were not so comfortable and so I was prescribed a different manufacturer's. Don't give up with trying different types. And make sure you are being seen by a specialist lymphoedema department. Alex Ramsden is a lymph surgeon practising somewhere in London - don't know if on NHS or private. On the Lymphoedema Support Network website, you will see there is a machine that can be used to reduce lymph swelling in the legs. So there are lots of routes to try. I wish you good luck. Emma

[Trickysite]

Mr Ian Franklin. Consultant vascular surgeon, 020 7340 4880, London, did reduce the lymph swelling in the legs of someone I know. Don't know if on NHS or private. x