Genital lymphedema

[Annaise]

Hi everyone I am searching for support on genital lymphedema as I know of a young adult that has recently been diagnosed with this heart breaking condition.

[Lynora]

What do you need to know? Is the young person male or female? What form if cancer has been treated? If they have been diagnosed, then there should be clinicians available to give advice and options about how to manage the condition. The LSN has literature available.

[Annaise in reply to Lynora]

He has been diagnosed with primary genital lymphedema 2 years ago by a dermatologist who is 3 hours away from our home. We were told basically there is nothing you can do for this condition and the only support we have gotten so far is a message therapist that is as well 3 hours away. I have since been searching the internet to find support. The message therapy gives him some relieve but have gone only twice. He uses steroid cream, antibiotics for flare ups and ice packs, also compression underwear for comfort at this point.

[ameliaindi]

If it's male lymphoedema there are things like this available from medi - mediuk.co.uk/compression/mi... plus they have "hereford pads" for female lymphoedema.

[Lynora]

If it's lymphoedema, then steroid cream will make no difference to lymphoedema, unless there is underlying infection. The compression device that chantalb has mentioned above can be useful - and there are other products available - but these should be provided by the clinic. Are you in the UK? How old is the patient? Primary genital lymphoedema is quite rare.

[Annaise in reply to Lynora]

He is 22 years old and lives in Canada.

[Lynora]

May be worth touching base with one of the Canadian lymphedema associations - I used to know someone who was registered with the Lymphedema Association of Ontario - I'm sure they will be able to find an association in his area he could contact to find more products and advice. LSNUnlocked is based in London, although there are a few overseas members. Products we recommend may not be available in Canada.

lymphontario.wildapricot.org/

[4Gotten]

Hi is it in the scrotum?

[Annaise in reply to 4Gotten]

Scrotum and penis area.