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

[Loramay in reply to Hopeful100]

I had some skin coloured compression leggings supplied by Haddon I think via my lymphoedema clinic which had compression right up to my waist although it was lighter on my tummy area I didn't get on with them due to having urge incontinence it was about 4 years ago now so I can't remember much more

[Hopeful100 in reply to Loramay]

I suffer with constipation and find with the compression that makes it worse too. It’s so hard to find the right things isn’t it. What did you do instead or just give up ?

[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.

[Hopeful100 in reply to Mushy1]

Thank you I’ll have a look at the shorts ! The machine - how much do you use it?

[Mushy1]

Here are the shorts I mentioned

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

[sharon1234]

I have exactly the same problem as you it’s my private area all my stomach my stomach obviously an apron and it hangs down that much and it’s that solid with lymphaemia and also the more I do the more it gets bigger and bigger and bigger my left leg is also so big I can hardly walk. I cancer and removal of lymph left side. Am I cannot find any compression for that area either but it’s nice to read that the more you do the bigger it gets because I feel I’m not on my own. Thank you, Sharon from North Yorkshire excuse my but I’m not the best.

[Hopeful100 in reply to sharon1234]

Thanks Sharon. Sometimes I feel like no one else understands so even though it’s rubbish it’s good to know I’m not the only one.

[Bettys-rose]

Hi Hopeful 100,

I too have lymphedema in my genital area, abdomen and both legs, lower legs seem worse than thigh( but it is mild) and wearing Juzo stockings grade two has helped maintain it.

I wear level two Juzo shorts, level one in the thigh and level two in the abdomen. I also use some mobiderm padding in that area and also at the bottom of my buttocks.

I have attached a YouTube link by Professor Mortimer and Anita Wallace of LSN. He explains how people can get swelling in their abdominal area following lymph removal and radiotherapy. He also gives advice on how to keep it under control.

(If the link does nt come through properly try inserting it in you tube. There are other short videos by him and Anita Wallace up there)

I am fairly active walking and swimming regularly. I swim lengths and walk at the shallow ends. Doing some leg strengthening excercises. But my abdominal area continues to increase in swelling. I tried an abdominal/genital pad but did nt find it comfortable, I also worried about the sweat it caused as I worry about skin breaking with the possibility of cellulitis.

I have done some MLD/SLD also using the deep oscillation therapy (DOT) device. My partner also assisted several times a day for a 6 week period but we did nt find it helped and it took up a lot of time. I am aware some people find MLD etc helpful and I would not want to put anybody off from doing it. However I have read other comments that state recent reports feel it is not beneficial. I went to St George’s and was informed it would not help me. I do have a bit of hardening in my mons pub and lower buttock area. I was told this is due to radiotherapy scarring.

I was given Kerra pro pressure reducing pad to try. It’s made of nylon I think so much softer. This was more for the genital area. I need to try using it a bit more. It is difficult for me to use due to the incontinence issue. I am about to try different medication for incontinence so hope I will be able to try it more in the future. I was also given a lipo elastic abdominal binder to wear around the house. I did try it for a while and feel I could go back to it.

I am overweight, 29 on the BMI category. I think it would help if I could lose a bit more weight and hope to do some more abdominal exercises as professor Mortimer suggests.

With the urinary incontinence I have to wear pads. I think this has helped some areas of my genital swelling. However I also think the compression works against my bladder and increases the incontinence. It’s all a bit of a battle!

Abdominal lymphoedema - YouTube

I hope the you tube video helps to understand it more and gives you some ideas. Sorry I can’t be of more support around getting the swelling under control but hope you feel less isolated knowing you are not struggling alone.

I have been very anxious/apprehensive of flying. But recently had a short internal Uk flight and a european flight. I don’t see any difference in swelling for these flights. It s good to get small gains!

Sorry for being late with this reply. I am also aware the content is a bit all over the place. It’s hard trying to put it all down.

Best wishes

[Hopeful100 in reply to Bettys-rose]

Thank Betty - I’ve also been worried about flying and really could do with a break so that’s great to know.

I’ll have a look at the video too

I do find MLD helps me particularly in my thighs but less so on the abdomen and pelvis and like you my BMI is too high, I’ve joined a slimming class this week to try and help get a bit of weight off - I’ll let you know if that helps at all

I feel for you having urinary incontinence in the mix as well that can’t be easy on top of everything else. I’m just so disappointed that the after care isn’t as amazing as the cancer care - feel very alone sometimes and with the fatigue I’ve got I spend quite a bit of time on my own - I get massive FOMO and feel like life is on hold

The binder looks interesting- they didn’t have my size available at my last clinic as it’s a trial product and I’m conscious I can spend a ton of money trying all the different things out there that say they’ll help but may not, maybe next time I’ll have lost a bit of weight and it’ll fit !

Thanks again

[Bettys-rose in reply to Hopeful100]

Hi hopeful100,

I joined slimming world a few years back and lost a bit of weight then. They have good recipe books too.

I heard from a private lymphedema therapist that St George’s was advocating that doctors should prescribe the injections to people with Lymphedema to loose weight. I don’t have anymore information than that! I saw someone on face book that had purchased it privately and had great success. However I m not aware of all of the side effects etc and probably best to get it via a GP. I ll try dieting in the first instance.

I have had similar feelings of missing out. Last year I had a couple of short breaks away in this country and am pleased I have been able to build it up to getting out of the country. Still a bit concerned about getting through the summer with the heat.

Don’t know if you are aware, Lymphedema United are hosting a few virtual meetings on Teams as below. An opportunity to chat with others.

Midlands: 6pm on 20th March 2025

Wales: 6pm on 3rd April 2025

Northern Ireland: 6pm on 10th April 2025

South-West England: 6pm on 17th April 2025

North Home Counties: 6pm on 8th May 2025

South Home Counties: 6pm on 15th May 2025

East Anglia: 6pm on 22nd May 2025

London & South-East England: 6pm on 5th June 2025

Republic of Ireland: 6pm on 12th June 2025

Members of Lymphoedema United only!

To register email

[e-mail]

If I come across any product I find helpful I can let you know?

Best wishes