Pubic/Pelvic area swelling

[Muktinath]

Hi, I have post-endometrial-cancer Lymphodema in my right leg and pubic/pelvic areas. I can just about manage the leg with compression garments, self massage, exercise and diet, but the lower belly area underneath where I had radio therapy seems impossible to manage. Nothing I do seems to help it. I have flat-knit shorts, but they don’t seem to help. I have always been slim and fit and get very depressed when I see how I’m developing a tyre is flesh around the lower belly, where I didn’t previously have any. Does anyone have any advice? Can a pump help that area, for instance? Chris

[Lynora]

Can your lymphoedema clinic give you some instruction on self lymphatic drainage for the abdomen? Is there an MLD practitioner you could see for treatment/guidance? I see you are already doing self massage, but there are some techniques that can be used on that bit specifically. Also, I have used ‘patterned’ compression pads on clients - tucked under their shorts. A pump might not work if the lymphoedema has developed below the affected/removed lymph nodes, but if you could try one before investing in one, it’s probably worth it.

[On_porter]

You need to try shorts that you can pull up above your stomach - or so the band is in a place where you don't have lymphoedema, otherwise, you'll just be pushing whatever fluid / lymph there is to a different place. I'm not sure what else to suggest as I now have it in my stomach / chest as well, so I binned the shorts and just hope for the best!! Lots of walking, stretching your legs out etc - try not to sit down too much as this will help the build up of stuff in that area, more than anything else.

[Muktinath in reply to On_porter]

Thanks. I did have a suspicion that my Jobst shorts were just holding it all in and making things worse. Yes, sitting down is the worst.

[On_porter in reply to Muktinath]

They are a bit useless! Honestly not sure what to suggest unless you can see an MLD nurse as doing it yourself is next to impossible, Best of luck!

[CCT67]

I’m also slim and fit so I share your frustration having a lymph belly band. If your local lymph clinic isn’t able to provide you with abdomen/trunk self-drainage advice (SLD and garment inserts) then you could self-pay to see a private, local lymph therapist for guidance. Private clinicians can be found on MLDUK.org.uk, look for DLT designation next to therapist names.

A pump might exacerbate your abdominal/lower trunk swelling, as pumps deposit lymph drawn up from the legs and groin into the trunk. If your abdominal lymphatics are already compromised and then also trying to cope with additional lymph, further problems can develop. Even if you only used pump shorts garment (no leg), it may result in putting too much pressure on your lymphatics above your lower abdomen where lymph would be deposited by the pump. You wouldn’t know if this would cause difficulties until using the pump for several months or years ie cumulative effect. How helpful or problematic a pump would be would depend on how resilient your working lymphatics in your trunk are.

You may want to try the Haddenham Comfiwave Abdominal piece. The Comfiwave compression line is for night time and when relaxing at home. If you were to use the abdominal piece at night it would provide helpful compression - it has narrow channels that direct lymph away from the lower abdomen, and help to soften the skin/tissue. I love this product. Unfortunately, the abdominal band is not on NHS tarriff yet, but if you’re under a lymph clinic they might fund it. My lymphie nurse sorts it for me. I work from home and wear my abdominal band all day. I also have M2M flat-knit shorts (that come up to just below my breast as opposed to ending at the natural waistline) but opt for Comfiwave when at home.

The photo is of the entire Comfiwave line - the abdominal band is pictured with the upper leg piece, but it is it’s own separate piece.

Have you tried k-tape for lymph drainage? I often use tape to support drainage/direct lymph away from more congested areas, including my lower abdomen. Taping for lymph drainage is different than taping for muscular issues. I find taping really helpful - both traditional k-tape and the new 6D tape.

Haddenham Comfiwave product line

[Snobie in reply to CCT67]

do you know if they have a piece for the abdomen? I see in that picture that only goes up to about the belly button. I have Lymphedema up to my chest.

[Lynora in reply to Snobie]

You could call the Haddenham team - they are very helpful, and might be able to offer a solution for you.

[CCT67 in reply to CCT67]

you could combine the waist piece and breast band for more coverage. The waist piece comes up just above the belly button to the true waist

[Perido]

I developed unilateral secondary lymphoedema in leg/pubis, 2017. Ever since, I have worn a lymph pad, covered with tubifast, on my pubis. The pad is held in place with close fitting knickers; I choose the no VPL style as they don't have elastic trim which is apt to pinch/constrict which may impede lymph flow imo. I've worn a thigh length stocking plus toe caps since 2018.

Last year I notice swelling on my hip/buttock and it's ongoing source of frustration how to control it. I wear shop bought light control shorts for the first half of the day. Not sure if they help but I've yet to find some that fit well. I agree with the comments that sitting too long probably makes things worse.

My favourite gadget is a Physiopod deep oscillation device. I've used it daily on my leg for the past 2-3 years and I feel it helps. I've also used it daily on my hip/buttock for about a year and I feel it helps a bit.

I bought a LymphaPress compression pump with a trouser garment earlier this year. I'm not sure if the pump is helpful or not; in fact it scares me a bit. I'm hedging my bets so I'm only using it about once a week but not so much in winter because I don't like staying still too long when it's cold. I clear my axillary nodes prior to using the pump and do diaphragmatic breathing during a pump session to try and avoid build up of lymph fluid in the mid region.

I recently acquired a Haddenham Comfiwave abdominal band. I wear size 10 trousers but it seems I'm borderline medium/large fitting in the comfiwave. I went for the medium with the intention of wearing it during the day but I felt too constricted after a few hours; so now I'm thinking I need to try the large. I sometimes wear the band for about 10 minutes during my morning exercise routine; it seems to have a nice micro massage effect which I think may helpful. I'm not sure about wearing the band at night because I don't have suitable night compression for my leg and I don't want to make my leg worse; my nurse doesn't seem willing to engage with my concerns because she says my swelling isn't bad enough but I'd rather be procative than reactive - I may have to self fund.

[Muktinath in reply to Perido]

Hi Perido,

I seem to be having trouble with the forum! Sorry if my responses don’t follow logically!! Anyway, thanks very much for this recent message. It’s very helpful. I don’t think I even know what a lymph pad is. Is it a flat shaped piece of foam or is it more substantial? You refer to your nurse. Is this an NHS person? I don’t have one, but can’t really afford to carry on privately.

I’m very interested in the Physiopod device. Is it something my doctor could prescribe? How did you hear of it?

I may try a Haddenham comfi band. I feel very unsupported by professionals and a bit lost at the moment. It’s certainly difficult being a slim person with lymphodema. The swelling feels just as distressing, even though there are many people in a much worse state.

Thanks again. You’ve rekindled my determination to fight this, and the system 👍🏼

[Perido in reply to Muktinath]

Hi Muktinath

The lymph pad I have is a textured synthetic latex pad which enables localised compression; it's supplied in small sheets which can be cut to the desired shape. Mine is a triangle with the apex pointing downwards to cover the pubis; I cover the pad with tubifast for hygiene and comfort. My pad is textured with raised dots; I have the one with smaller dots as shown in the following link: medi.de/en/products/medi-ly...

There are pads which are more substantial but I've not used them e.g mobiderm: thuasne-store.co.uk/product...

I bought my Physipod device; it's expensive and I doubt it's prescribable under any circumstances. It doesn't perform miracles but I find it useful to facilitate and boost the SLD part of my daily management routine. I first heard about, and experienced, the device when I had an appointment with a MLD therapist. MLD therapists who use Physiopod devices (sometimes referred to as Hivamat) can be found via the following link: physiopod.co.uk/therapist-m...

I'm sorry to hear you feel unsupported by professionals. It's not unusual to hear that from lymphoedema sufferers; I've had to push for help on several occasions. The nurse I refer to is a NHS lymphoedema specialist nurse who I see about twice a year at a local lymphoedema clinic. Your GP should be able to refer you to a local clinic, if you're not already attending one.

A quick fix thing I do to try and manage my swelling include a few diaphragmatic breaths now and then throughout the day, followed by emptying of the axillary and groin lymph nodes; all helps to keep lymph fluid moving in the right direction.

I also get very distressed by my swelling (ugh!), although my nurse describes it as mild. I decided I needed to embrace it and commit to experimenting and managing it as best I could - it's a daily thing!