Genital lymphadema

[Kathy321]

Hi all

I had vulvar cancer and this was removed in November last year. They took the groin lymph nodes too to test for cancer. I had 6 in the left and 7 in the right groin. 4 months on and I am still having issues down below. I have a cavity at the top of the vagina ( where they took the lump from ) around the size of a £2 coin that keeps leaking fluid. It has tested positive as an infection but it just won’t go despite antibiotics. I am also very swollen in the pubic area and the left hand side of the vagina. The consultant says this swelling could be the infection but could also be genital lymphadema.

I went for an appt to the lymphadema clinic last week and they think it is lymphadema but as my consultant said, how can it be when I have a gaping hole that any fluid could leak from therefore reduce the swelling.

I got some Spanx as per advice of lymph clinic and wear them daily to see if helps

I am just so upset and confused about it all. I have been told that time will tell if it is lymphadema once they get the infection under control as in if the swelling reduces once infection goes then it’s not lymphadema. Just hoping and praying I don’t get it in my legs too. No signs at the mo.

Any help or advice/thoughts would be appreciated.

Thanks

[mrsmummy]

Why not try the Lymphoedema Support Network community?

healthunlocked.com/lsn

[Kathy321 in reply to mrsmummy]

Thank you. I’ll check that out

[mrsmummy in reply to Kathy321]

Just click on the link above.

[peege]

Hi, did you manage to stay off the ciggies?

So sorry to read of your recent woes but mrsmummy has a good link above. I doubt that many here will have much experience. It sounds so difficult fir you so I do hope the Lymphoedema community have some ideas. Just go into 'My Hub' very top left, scroll down to 'browse communities' until you find it. Good luck. P

[Kathy321 in reply to peege]

Hi P

Yes still of the cigs. 4 and half months now and doesn’t bother me at all these days. I will never smoke again that’s a fact.

Thanks for directing me to correct place

X

[Hidden]

I doubt that anybody here will be able to help you with advice, Kathy, but you can be sure that many will, like myself, be wishing you all the very best and hope Lymphoedema Support Network community can help you.

[Kathy321 in reply to Hidden]

Thanks so much

[SquirrelsHolt]

Yes,sincerely hoping that you make a full recovery. I'd imagine that the right support group will be able to offer you far more in depth support, that unfortunately we can't. MrsMummy gave you a good link.....plus all power to you for beating the nicotine habit and staying off. Best wishes for the future.

[Hidden]

Yes sorry like others have said I think the lymphedema community may have more info but very very goodluck for your results xxx take care and hope all goes well xx

[Caspiana]

Hello Kathy321 .

I'm sorry I can't provide any information about your condition but wanted to say it sounds very uncomfortable and I hope you will get the right treatment very soon.

Sending warm wishes.

Cas xx 🌹

[Serendipity68]

Wishing you the best xx

[cazbay]

hello Kathy 321 , I'm sorry it is nothing I can help you with either ,but I do wish you well & hope you get sorted soon x

[Ranv56]

Just want to send you warmest wishes. Xx