Lymphoedema...M.L.D. and/or compression garment?

Hi all lympho-ladies, question for you…how often do you have MLD and if you have breast lymphoedema have you been offered a compression garment to wear?

I know that I have been lucky for the last year in that I get MLD on the NHS, but have heard rumbellings that this is possibly going to stop for people with mild lymphoedema and they are going to squash us all into a compression garment,ie a surgical vest ! I was given one to try a while ago and it was something akin to an instrument of torture, trussed up in some high necked medieval uncomfortable thing of hooks and eyes and velcro straps,sooo uncomfortable to wear that I will never complain about my sleeve… Does anyone have experiences of a good compression garment?

Re MLD,don’t understand why they would stop that as we all know that lymhoedema is incurable but manageable and what they are doing at the mo has kept it in check or maybe they just want to wait till it gets severe before they start giving treatment ! Obviously a cost cutting exercise. My nearest private MLD therapist is a 100mile round trip away and charges £40/hour,going to be a hell of an extra expense to keep my condition in check if thats what I have to do.

I get so frustrated out the lack of knowledge ad research that is going on with lymphoedema,but at least I’m in the system,I do wonder how many more women out there are having to suffer this crappy side effect of breast surgery and aren’t getting any support.

Hi,
The compression vest sounds hideous!! I can’t even manage my made-to-measure sleeve!
I think treatment is pretty hit and miss, with some areas not getting any. I used to get monthly MLD on NHS, now more like 6-8 weeks but that’s because there are too many of us and not enough staff.
I hope we continue to get treatment but …

I know when I first got lymphoedema it seemed like the last straw and it is miserable but try not to let it get you down too much.

Goog luck and best wishes,
Julie

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Hi Julie and Norberte, yup the first compression garment I was given was a nightmare,have no idea who designs these things but obviously not a woman with lymphoedema,will keep you posted on the outcome,still waiting for my next one to arrive ! Can’t say am much looking forward to it.
Most of the time my lymphoedema is ok and I get on with it but every so often it seems to flare up,boob goes hard as a rock and arm just aches,looking on the bright side the sleeve has certainly kept me warmer in this cold weather.
I know lymphodiva site has some fantastic sleeves but does anyone know of a similar site in the uk? If I was handy I’d be setting up a snazzy sleeze and compression garment business!
Hugs to all.

Sandra x

Hi Sandra

Not sure if this of any help but on the stepup-speakout site that is american I found a garment that they rate as OK for mild cases of truncal Lymphoedema that is just a normal maidenform garment easily available here. My lymphoedema nurse was impressed with it and took the details to keep on file.

Andie

Thanks for that Andie,am scooting about the net looking at various items and some look a lot more comfortable and cheaper than the ones that have been ordered for me. Which Maidenform garment was the one that your nurse to details on?

Sandra x

Hi Sandra

The one I have is the Maidenform Control It camisole. The first one I bought direct from Maidenform but have since found that House of Fraser sell them

As the site says it does not have enough compression for flying but is OK for erveryday wear.

Andie

I have lymphoedema in my arm and hand. The right hand ring finger is 3 sizes bigger than my left hand. I have compression sleeves 2 and 1 glove. Theyve been telling me that they are going to charge for sleeves for 5 years and it still hasn’t happened. So fingers crossed. My issue with sleeves are endless but the main ones are:-

They get filthy in seconds. I carefully pull back sleeve wash my hands, then pull my sleeve back to eat!!!

I have to explain what it is every time I wear it.

They look hideous. Like I’ve a false arm. Surely someone could come up with different colours at least. Although I fancy a zebra or a leopard print.

Maybe we should get together and make them listen.
Although who they are I’m not sure.
Cherish yourselves
Chinook

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Thanks Norberte
You made me laugh. Unfortunatley the muckiest thing I handle on a daily basis is a class of 28 Year 3’s. Can you imagine the comments and questions if I started to wear rubber gloves in class.
Maybe we should get in touch with Theo from Dragon’s Den. Surely with all that Lingerie experience he should be able to come up with something sexy.
Thanks again for the laugh
Cherish yourself.
Chinook.

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Hi lymph Ladies
I don’t know if you have seen the other thread about garments. Check out the lymphodiva web sight. Obviously American ladies are much more bolshy than us and someone has seen the gap in the market. Some amazing sleeves, including leopard and zebra skin. They are VERY expensive compared to free but I have a birthday coming up and instead of smellies and chocolates I’m going to ask for cash. The only thing then will be which one to choose.
Obviously I’ll have to get it checked by nurse but I’m prepared to take a risk.
Norberte glad it wasn’t cellulite.LOL
Cherish yourselves
Chinook

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Norbert have you been in my classroom? Poking shoulders ? Would I?
I will let you know how good they are.
Chinook

Hi all,

Glad to see so many commenting on these issues, at least we are not alone. I started 4years ago, wearing these delightful body accessories. As if we hadn’t lost enough femininity with the op we are doomed to be trussed up for what I can only see as the rest of our lives. I know that sounds bad when we have survived cancer, but it is a burden everyday. I just don’t seem to get anywhere whatever sleeve I wear. The bottom half of my arm is 40% bigger than my right arm and I can never hardly wear my rings. Trying to buy new clothes for work, ie shirts, is a nightmare. As for the MLD, I agree the continuity of the treatment is hit and miss, and it is costing the NHS a lot more by not dealing with the problem at the time. Anyway we could moan about that and never gain anything. Just keep your peckers up and look forward to the zedbra’s and leopard’s that may walk our streets soon!!!Take care all of you and will drop in from time to time and see how you are all doing. xxx

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Hi Norbert
OH just ordered a black lace sleeve and gauntlet for me for my birthday. He didn’t believe me that they didn’t do anything similar in europe. (He’s moaning about import tax etc) So an hour later he settles down to do order for lymphodiva!
Can’t wait for it to arrive.
I’ll post with all the costs etc. and what I think.
Sorry to hear about financial strife, its all you need when dealing with BC.

Regards
Chinook

I think I might treat myself to one for going back to work. Let us know what they are like please. Debx

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Hello Ladies

I am a Lymphoedema therapist/MLD therapist…and I just wanted to say have you been taught how to do Simple Lymphatic Drainage by your Lymphoedema team…it is really useful if they are cutting back on the MLD side of treatment for mild lymphoedema…as done regularly it really helps…also wanted to mention that alot of GP’s will authorise at least one set of compression garments on prescription…(although none of the fancy stuff…plaim old black or beige)…we always recommend that you ask your GP directly…
Not sure if this is helpful xx
Love Debbie