Hi, I'm Laurelin & I'm new to the LSN!: Just joined... - LSN

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Hi, I'm Laurelin & I'm new to the LSN!

Laurelin profile image

Just joined today! Have Lymphoedema, Lymphedema, Overactive Bladder & Fecal Incontinence. Have an Osteopath for my Primary Care Physician, fortunately. Have a Urogynecologist too!! Would like to get a Lymphedema Physical Therapist to go to now that I know I have Lymphoedema. It's a drag having these diseases & conditions all at the same time. I'm sure there are others here that are battling the same issues. Are you out there?

13 Replies

Hi Laurelin and welcome! I am sure you will find others with similar experiences and of course we all share the joy of having lymphodema! There’s lots of information and tips on managing it on here, I have learned a lot since joining x

Laurelin profile image
Laurelin in reply to Lyndy

Thank you Lyndy

Hi Laurelin - welcome to the site. Have you found similar sites on your side of The Pond? The LSN is based in London, so our care is managed a bit differently - there are many members here who know exactly what you are talking about.Have you heard of LANA - you may be able to find a LPT through them?

Laurelin profile image
Laurelin in reply to Lynora

No. What is LANA?

Lynora profile image
Lynora in reply to Laurelin

clt-lana.org/

There are several national organisations in the US. If you use the Search option on this page, put in something like ‘help in USA’

So on a search I would say "Lymphoedema Support Network help in USA"?

Lynora profile image
Lynora in reply to Laurelin

Use the US spelling when you search - lymphedema - here are a few options, not sure how active they are:

lymphnet.org

inspire .com

clt-lana.org

lymphedematreatmentact.org

lymphedemapeople.com

My iPad isn’t playing ball with copy/paste!!

Good afternoon LaurelinMy names Melanie I have just read your message and I do understand I myself have M.S and chronic ostioarthritis and was also diagnosed with lymphedema just nearly 2 years ago it is a real struggle like you said battling so many conditions I also have incontinence trouble which I think is due to the M.S . I do hope you get things sorted I just wanted you to know you aren't alone feeling as you do.

All the very best

Melanie

Okay, but want Lymphoedema, not Lymphedema.

It's the same thing - in the USA, the 'o' is dropped.

Lynora profile image
Lynora in reply to Laurelin

Just had a thought - could you have meant lipedema? (Spelt lipoedema in the UK)

Just had my first physical therapy treatment with Kristen, a Lymphedema Physical Therapist. She verified that I have Lymphedema in my abdomen, genitalia, both legs & feet. Showed me how to manual drainage for abdomen, both legs, feet. Told me to get referral to Pelvic Floor P.T. Sammi in particular. She is knowledgeable about Lymphedema in genitalia. So now have appts. with Kristen and Sammi coming up. Am to do manual drainage either 1st thing in morning before I put on compression stockings or at night after I take off stockings. Think I prefer to do drainage in morning. Feel like now I'm getting somewhere!

Hello Laurelin, great news about your MLD.I do mine every morning too. I've also found an amazing Physio who is helping me with the Arthritis, he also has knowledge of Lymphoedema. He has given me lots of exercises to do myself at home. Which I am doing, so very difficult at first though.

I still have pain but I am getting my mobility back.

It's a good feeling when something is happening.

Take care

🤗

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