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. Thankfully I was given the all clear in December and the nodes were cancer free however.....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.

Can I also say that I do hate myself sometimes for moaning about this as I know how lucky I am to still be here and know that someone with terminal cancer would wish they only had my issue so I do have a word with myself quite often to remind me how lucky I actually am

Any help or advice/thoughts would be appreciated.

Thanks

[Lynora]

Where are you based Kathy?

[Kathy321 in reply to Lynora]

Leeds

[Lynora]

Have sent you a PM - the little bell in the icon bar above may be orange!

[AnneBury]

I see Lynora is in touch with you and I am sure she will be helpful. There is also The Lymphoedema Support Network lymphoedema.org . They have a website and a telephone helpline. In relation to possible lymphoedema in your legs - just try to park that to one side for the time being. Most of us with lymphoedema in our legs manage perfectly well. Obviously we would rather be without it but it is not something to be too anxious about. Put your efforts into understanding, and getting your current situation managed. I am a primary lymphoedema person (both legs and feet). My mother-in-law has had cancer of the vulva - you don't often hear about it. She has had tiny bits of leg swelling but nothing much at all (I am way ahead of her on the leg swelling front, but stable, active, well managed and about to go on holiday to Sri Lanka). With very best wishes x

[Kathy321 in reply to AnneBury]

Thank you for your comment. And you are right. I do need to forget about the possible leg lymphadema. Was just staying to my hubby that maybe with my legs it’s as bad as it’s going to get. And it isn’t bad at all. The only thing I notice really is if I wear socks for even a short time they leave an indentation mark which I don’t think they used to but maybe they did .. I wasn’t checking before all this. And on a night legs ache a little bit I’ve also put a bit of weight on so could all be linked to this too. I am now on a diet and will lose this excess weight tho.

Have a lovely holiday in Sri Lanka and thanks again for replying

Xx

[Oonagh1]

Quite rightly you should keep an eye on your legs and feet , get class 1 compression instead of Spanx , If infection is suspected surely your doc can take a swab and send it for testing? If infection then antibiotics can be prescribed...why play could be/may be? If your genital area is swollen then some local compression under a compression garment should be worn.. the local compression can be a large, heavy duty incontinance pad or similar, you are just taking precautions. Lymphedema gains ground very quickly so do what you have to do. Remember so many of us are not diagnosed properly and in good time. You know your body.

[Jude4]

Hi Kathy,

This is just to say that I can imagine how you are feeling, as I also had all my lymph glands taken from my right groin 30 years ago during the operation for cervical cancer, which was worked on from the inside, so I was stitched up from the top of my vagina. At that time the LSN didn't exist, and no-one knew what to do to alleviate the leg swelling. I felt that it might be akin to having your leg in concrete, as I stood to do my chores!

7 years later the LSN was established, and I found it SO helpful. From experience, I know that we must keep badgering our GPs, even our MPs, to get our problems noticed and dealt with. I hope your diagnosis gets sorted very soon, and wish you very good luck!

[Hidden]

go ahead and moan ... we all understand where others do not..... I first had swelling in my groin and then I got it in my full left leg belly hip hardly noticeable to the untrained eye... left leg is twice t he size of my skinny bony right leg.... (size 4 dress)

i never had surgery this is genetic and came with menapuase (can't spell sorry)

good luck... keep asking ... someone can help you .. my groin swelling went away the dr just told me that is what happens to woman when you get older. I didn't think so

how would I know though I don't take surveys.....