Increasingly frustrated

[Hopeful100]

I have lymphoedema in both thighs, genitals, pelvic and abdomen and struggling with everything.

compression wear helps with thighs but my nurse can’t find something that helps with the rest. I am using pitpaks and while they help a little they break the skin so I’m uber worried I’ll get an infection. The pelvic area is becoming fibrotic.

I can’t understand that post vulva cancer and groin node removal why I have lymphoedema in my abdomen and can’t seem to find anything to help reduce - I am diaphragm breathing daily.

I also find that the more active I try and become the worse the overall swelling gets and the fatigue is horrendous. I feel like I’m going round in circles and making no progress at all. It’s really beginning to get me down

any help or advice would be super welcome

[CCT67]

Sorry to hear of your difficulties. I can empathise with similar. Have you tried Haddenham healthcare female genital compression pad or Jobst Jovipad for genital swelling? They are not on prescription but your clinic may order one of them (mine did) or you could self pay xx

[Hopeful100 in reply to CCT67]

I have a foam one and a cherry pip one. The cherry pip breaks the skin and the foam one is a funny shape and doesn’t sit right. The pip one is really helpful. Sadly neither help for pelvis or abdomen.

[Perido]

Hi Hopeful100

Exercise, little and often, works best for lymphoedema in my experience. Prolonged or intense exercise can overload the lymphatics resulting in increased swelling which might not show until the following day.

Keeping well hydrated helps with lymph flow; limit caffeine and alcohol. Also many advocate an anti-inflammatory diet. To keep it simple I focus on having a balanced wholefood diet, avoiding ultra processed 'food' which seems to help.

My lymphoedema, resulting from cervical cancer treatment, is located in one hip, buttock, entire leg and foot and a little in my abdomen. My genitalia don't seem to be affected. I wear a thigh high compression stocking every day. I mostly use kinesiology taping to help with my hip/buttock/abdomen swelling - maybe that's worth trying if you haven't already?

I also have a deep oscillation therapy (DOT) device which I use daily. I feel it helps to keep my swelling soft and the makers claim it can reduce fibrosis. The device, a Physiopod, is expensive so, before purchasing one, I had some treatment with a therapist who uses DOT to check out whether it might be helpful for me. If interested you can find out more from the physiopod website: physiopod.co.uk/

[Hopeful100 in reply to Perido]

Thank you. I’ll investigate!

I do use tape too - strangely different parts of my skin react to it with a nasty rash, but others don’t.

[Perido in reply to Hopeful100]

Oh, I also get a rash from the tape on certain parts of my body! I have partly solved the problem by using the 'Gentle' tape from Haddenham: lymphshop.com/kinesio-tape/

[Hopeful100 in reply to Perido]

Thank you!

[Rosado22]

I wear sweaty Betty running tights full length largest size and pull them right up at the front as far as they will go first walking etc and keep them on Things haven’t really developed but my abdomen can get bigger and smaller and a bit of fluid accumulate at top of thighs. I had many pelvic lymph nodes removed in surgery for ovarian cancer. I too do a lot of diaphragmatic breathing and a lot of gentle upper body stretches each day. Seems to help things move on up. And sometimes an Epsom salts bath.

[Hopeful100 in reply to Rosado22]

Thank you. I’ll have a look. The nurse did suggest compression leggings as an alternative to use but only sometimes as they don’t offer same compression as prescription ones

[Mushy1]

I also have lymphoedema following lymph node dissection associated with prostate cancer.

Mine is also in the pubic, genitalia and upper thighs

Good skincare management is my main focus and I use Dermol and Aveeno After Shower Mist to help with this.

The Thuasne Mobiderm Intimate Shorts are designed for Lymphoedema in the pelvic region and they come with a pad that helps targeted compression.

I also use the Deep Oscillation Machine (DOT) on daily basis and believe it’s a critical part of my daily routine. Unfortunately it is not cheap but I believe the investment is well worth it when you consider the alternatives.

Hope you manage to get things sorted.

[Mushy1]

Here are the shorts I mentioned

thuasne-store.co.uk/product...