Is anybody's lymphedema affecting their lady area on one side

[sharon1234]

Does anyone's lady areas get affected by lymphedema I have lymphedema in my left leg and the left hand side of my lady area is affected by the lymphoedema in my leg and I'm just wondering if anybody else is affected. It's just like the the line drawn down the middle to affect my left hand side it goes from my toes to my gut

[Lynora]

Hi Sharon - yes, this is quite common. Have you mentioned this to your clinic?

[sharon1234 in reply to Lynora]

Yes I have and they tell me to get some tight panties. But when I look at it and see it it makes me feel less of a woman and I'm just wondering if there's anything else I can do about it but thank you kindly for your reply.... Your so kind x

[Lynora in reply to sharon1234]

There are a few things you could try - your clinic should be able to give you guidance - especially about self-massage for genital oedema, and tips about padding that can be used as a form of compression.

If you got a group of women together, and got them to strip off and compare ‘bits’ - once the laughter stopped, you would be amazed at the diversity in shapes and sizes of the various parts 😉

[sharon1234 in reply to Lynora]

Your so funny. Really made me smile. I'm going to mention these things you have mentioned and I hope they give me some ideas . Are you a lymphoedema nurse yourself ? Because to me yousound an expert

[CCT67]

Hi Sharon

You’re not alone! It really messes with self esteem and I find dwelling on and looking at it is unhelpful emotionally. I’m very disappointed to hear your LE clinic brushed you off. It may be they have no experience with vulvar swelling especially as ‘tight panties’ Is not the best way to treat it! Lynora knows her stuff - she is a Lymphoedema Therapist and moderates this LSN forum. There are compression products that can help address vulvar swelling, it seems you might need to go outside of the NHS to a LE therapist who has experience with this aspect of treating LE. Some nurses receive much less comprehensive LE training than therapists do, it seems this is the case at your clinic. You can source qualified private LE therapists on MLDUK.org.uk. It’s a fair question to ask about experience treating vulva swelling when selecting a therapist x

mlduk.org.uk/therapists/

[buddlia12 in reply to CCT67]

Nurses working in Lymphoedema clinics have very likely attended training with either Casley Smith team, Lymphoedema TRaining Academy or Vodder (MLD UK) training alongside those who work privately. I think the issue is that of experience .Professionals working with this complex condition can only gain practical experience if they are `exposed' to different presentations and scenarios within their practice, otherwise their knowledge and advice is informed by the theory they have learnt. Firm underwear can be a useful aid to treating genital and vulval swelling, alongside pressure pads as Lynora advises, and compression for the leg. But there are also other options to thigh length hosiery which may be exacerbating vulval oedema. Self manual lymphatic drainage is a key component for vulval oedema. Deep Oscillation is also very effective for some patients. Kinesiology tape works for others.

[AnneBury]

Just to add to CCT67. Lynora provides lots of helpful advice but she isn't an LSN moderator of this site.

[Yvonne-Gatens]

Hi Sharon I suffer from left leg, buttock and vulva lymphedema. I have had 6 operations to reduce the swelling and cut away the lymph from vulva as kept getting cellulitis in vulva due to fluid weeping from area. Looking lots better but need to keep under control

[sharon1234 in reply to Yvonne-Gatens]

Oh wow l've never heard of it been cut away. I suppose if you keep getting cellulitis in that area it is a good idea to do that.

[DeborahS32]

I have the same issue - mine's right side swelling. I'm fortunate that in the vulva area it's not too bad or noticeable, for me the groin area is worst. Mainly because I have chronic discomfort there - nothing too bad most of the time, just niggly discomfort. In fact it was swelling in the groin that first alerted me to something being wrong. Unfortunately GPs either dismissed it or wrote it off as being nothing to worry about, until things became considerably worse and I really did need treatment (spread to whole of right leg, with recurrent cellulitis). Thankfully the leg problems now considerably reduced thanks to good treatment, but no change in the groin area, which remains untreated.

[sharon1234 in reply to DeborahS32]

How do you manage it. Also do you find the affected area on your lady area can be very itchy I think sometimes mine leaks lymph and this is what is making me sore some weeks. It can come and go. But I am very lucky so far that it's never been infected as I keep that area very clean 😀. Are you in the UK?

[Anniecurrumbin in reply to sharon1234]

I have the same thing Sharon - worse at night and the itching is awful - I use a cream Resolve plus one (mild cortisone) in Australia

[sharon1234 in reply to Anniecurrumbin]

Yes the itchy is awful. I've been wearing two class 3 lymphedema stockings at the same time but I find if I'm on my legs more I get really bad pins and needles so I have to take one of them off

[DeborahS32]

I think you're much much worse than I am in that area. Mine is no more than swelling, which from time to time is painful when I walk - but nothing too awful. Thankfully the worst of my problems have tended to be my foot and lower leg, which have both been really well controlled with the pressure stocking.

Yes, I'm in the SW of England. You?

[sharon1234 in reply to DeborahS32]

I have well controlled at made to measure stockings for both legs full length but it's like it just pushes are the lymph to that area the left side and the left side of my lower stomach it's like you can draw a straight line down . yes I'm from England North Yorkshire 😊

[Romaine1]

Sharon, do you have primary lymphedema? From birth? I am sorry for you and this horrible predicament. I had to have the personal area surgically removed. I can share more with you. I am in California.