As part of the LWO Community and PhysioPod LAW22/WLD22 Campaign we asked Dr Rhian Noble-Jones, Lymphoedema Specialist and Physiotherapist in Wales for her participation. Rhian took to the camera and recorded a video for us, thank you so much.. 

So support is something like lycra type material that doesn't dig in or leave any marks on your skin, you know things like the swimsuit type material or cycle shorts, so that you are getting a bit of extra pressure there you might be advised to put some extra padding there on one particular part of swelling for women this can be as simple as the old fashioned sanitary towels.

You might have a Lymphoedema Specialist that's advised you to put a sort of sponge padding there but in a particular shape, that's all good, that's useful stuff.

If you're using things that are absorption things, like sanitary towels, then just mind that it's not drying out your skin too much and you might need to be applying a moisturiser on the outside and not letting the inside dry too much cos it's meant to be a bit moist there regardless of what you're worried about in terms of leakage or anything like that.

In terms of the skin then, that needs washing every day but not with strong soaps or antiseptics unless you have been prescribed something in particular.

So something like the simple aqueous cream type things that you can buy cheaply from the chemist or you can get it on prescription if you need it and a good daily wash; so that it keeps that skin clean but not over washing so its getting rid of the natural things that are keeping your skin healthy

And then the strength, you need strength, you need strength in all of that area

so keeping your thighs strong with sit stand, sit stand, type exercise.

or it might be from regularly checking what your posture is through the day, just keeping yourself upright and strong,

But also doing your pelvic floor and men need to do pelvic floor exercises as well - so those are those lifting up inside exercise but also letting go and making sure it relaxes and there's lots of useful apps and things to help you with those.

NB these can also be done seated
 

Look after yourself, keep yourself clean, covered and strong and it'll be all good..

okay, good luck...... Rhian"

MY ANALYSIS
OFF THE SHELF GARMENTS

Although these garments are more readily available and much cheaper, they tend to have a lower compression and therefore do not achieve great results when worn all day. I found them comfortable (mainly because of the lower compression) and most are made of moisture wicking materials which helps regulate body temperature. Although a suitable alternative I found them lacking in compression within the pubic/genital region which is where I need it most.

NIGHTTIME COMPRESSION GARMENTS

Although these garments are lighter in compression, I found them to be highly effective in managing my lymphoedema whilst asleep. The downside is they are not a prescription garment and are very costly to purchase. 

ALTERNATIVE GARMENTS  

These are designed to provide support for other conditions such as hernias and post-operative recovery. Whilst the concept of inner foam pads within hernia pants is useful, I found the compression to be very localised and inadequate for dealing with my wider area of lymphoedema. The post-operative garments are designed for the management of torso/abdominal surgery which provided no benefit to my lymphoedema.
 

SPECIALIST COMPRESSION GARMENTS

There is no doubt these are the garments of choice when dealing with genital lymphoedema. They have medically graded compression and are designed to support the condition throughout the day. The concept of a micro massage weave within specific garments offers visible evidence of compression which in turn provides reassurance of the garment benefits. The opportunity to bespoke garments is an additional benefit but the issuing criteria of two garments every 6 months through the NHS impacts on patients, especially when they need to be washed daily due to hygiene reasons. This creates a counterintuitive situation whereby the increased number of washes reduces the effectiveness of the garment and makes it more difficult for a patient to remain compliant with their compression management.

PADDING

Although the specialist garments have produced the best results none have fully controlled the swelling I experience in the pubic area, particularly during exercise. To aid this I have used various padding solutions in varying densities and materials within my compression garments. Some have provided encouraging results but during activity they move around and require regular adjustment. An inner pocket and/or outer compression belt would assist with keeping the pads in place and also allow the level of compression to be adjusted to meet the needs of the individual."

I wasn’t quite sure how I would approach writing this topic, not something that is easily or openly discussed on support group. Members find this an embarrassing or taboo subject. I was pleased when our support group members posted their comments. The original question was! “For those who have leg lymphoedema what are your issues with shoes and clothes?” We have covered Footwear, trousers were another issue, and then the conversation moved to underwear.

To quote one of our members:

“Good grief I don’t believe I’m talking about me knickers in public”

Genital lymphoedema can be primary or secondary and hygiene needs to be scrupulous.  As we will hear from Dr Rhian Nobles-Jones, both female and male underwear needs to be supportive and give support to the pelvic and genital area.

One member stated:

“Underwear is a pain, as I have lymphoedema all the way to my groin/genital areas and I find underwear cuts in”.

The underwear worn needs to be comfortable, our female members liked cotton gussets with a preference towards all cotton because they are more absorbent. However, there were lots of complaints about underwear that doesn’t stay in place, rides up, gussets that sag, no good to anyone with genital lymphoedema because they need support. Elastic is another issue that is either around the top of the garment or around the legs because it digs in and leaves indentations, not good for lymphoedema swelling. Our member’s experience finding the right kind of underwear is difficult especially for larger size ladies and took the joy out of shopping.

Underwear needs to be comfortable; it is personal, we are all unique and know what works for us and even though it is not seen under clothes the need to feel confident and secure as we go about our daily lives is vital.

Another member stated:

“I go up a size or two, so they don’t cut in when the area swells between my legs, but they are still ‘Bridget Jones knickers’ to be honest”.

The overall feelings from our support group members are that finding the right underwear was expensive but if you didn’t find the right underwear more issues were caused because ‘normal knickers’ dig in so much and cause more damage.

One final thought from me, those ladies that have genital lymphoedema are left to their own self care and receive little or no treatment. Several members haven’t had medical support for years. Which is why its great to see Dr. Rhian Noble Jones and others researching, treating, and highlighting genital lymphoedema.

"I used the Deep Oscillation therapy using "the paddle" with a patient with genital swelling.  They had quite engorged swelling which was very uncomfortable and tight, but mostly very distressing.  They had other health problems too, and because of this, conventional methods of treatment would be contraindicated.

Using the paddle to self treat (because of the private area being treated), there was no embarrassment from the patient, they felt in control, and I guided them to use stroking movements up towards the groin/trunk - for SYMPTOM MANAGEMENT ONLY.

After one treatment the swelling was much softer to one side of the groin and the genitals felt less full. After the 2nd treatment a week later, both sides of the groin felt softer and the genital area was much softer and less swollen and stayed improved until the next appointment with mild intermittent swelling.

After the 3rd and final treatment (the trial period) the swelling felt more comfortable.

The patient experienced it as "really good, it helped a lot, it was really comfortable"

Other methods of gentle compression to the genitals were used, but alone, they were not as effective. The introduction of Deep Oscillation and self-treating made a big difference to the patients quality of life and symptoms.

Jan Bell

Lymphoedema Specialist Nurse

Berkshire West Sue Ryder Service