Hope?

[Jaykai24]

I have been reading the blogs and responses today and feel relieved to know that I am not alone. I had a serious riding accident 4 years ago which left me with a broken pelvis and hematoma in my left thigh. I needed an operation to clear the blood clot and was left with secondary Lymphoedema. I was told at the time that this might happen but it still took over 2 years for anything to be done. After several visits to my GP and being told that I would have to put up with it as there was nothing that could be done I decided to go back to my surgeon who gave me a referral to see a Lymphoedema nurse. I was allocated 12 weeks for my treatment but nothing went to plan. I was told that my left leg was 30% bigger than my right. I was bandaged there and then, without notice and was unable to drive home. The bandage slipped within the first hour and I had no choice but to remove it after 4 as it was painful. I was given compression garments which did not fit and dug into the back of my knee. In all I was left feeling like an inconvenience and my leg improved very little in those 12 weeks. I'm a single parent with a full time job and was not given options for treatment. To this day I still don't fully understand the extent of the damage and what can be done to help.

I was and still am very despondent and resigned to the fact that my leg will always be heavy and painful. Following on from my sessions I gained a lot of weight as exercising was painful. Being so down made me just sit around and eat. I'm now 4 years on from the accident with a leg that is almost 40% larger than the other and on a good day aches. I cannot kneel down or sit comfortably. I even walk lopsided and with a limp to compensate for my huge thigh, this is leaving me with hot and painful hips.

I am going to make the effort this year to change doctor and see if that helps. I'm also trying to lose weight as I know that is a huge problem.

Thank you to all who have blogged before me as you have given me the hope that I can be helped

Xx

[Lruk]

Words fail me Jaykai regarding how badly you have been treated. There is hope and with the right treatment your leg and therefore your hips and life in general, will get better. You need to go back to your GP, or change practice and visit another GP and keep going back until you get the correct treatment. A referral to a lymphoedema nurse is the least I would be asking for.

I have luckily never needed to be bandaged but stockings do sometimes slip and cut in behind your knees. There may be issues over whether you were correctly measured or not, but regardless you can either put a piece of soft fabric behind your knee, which may help or, a tip I got from a lady on this site, is to dampen the elastic at the top of the stocking once it is on place then, as the water dries the elastic tightens and the stocking doesn't slip, or at least not as much.

I feel for you with regards to the pain and the heaviness and the overall weariness of the entire thing, but you do need to keep going and get back to your GP as soon as you can. The sooner you start the correct treatment, the sooner things will start to improve.

Take care, Linda.

[Ginsing]

Do keep going there is no reason to suffer and it really does help take the pain away and the secondary pain in hips back etc. Do hope you find a Nurse or physio who specialises and get you on the path to better days xgins

[morganite]

i empathise with you its been an awful time and you should have better help from your gp. However alot of gps would ay they are not experts in care of lymphodema and many of us are not tretaed early enough, I had 4 months of wrong treatment until my legs were so swollen and the skin actually blistered, Thank goodness for tisssue viability nurses who sorted that out, Had the scan and then compression bandageing, Yes it was bulky, but the discomfort and pain was instantly improved I had to have several months of that but now wear my below knee compression stockings. Took me 2 yrs to get to a lymphodema clinic and theyve taught me exercises to help as well and more knowledge of other compression garments. So take heart there is help and we have to demand better care, Goof luck with your journey we are all here to listen too. x

[lovesradio]

Can I echo all above posts Jaykai and good luck with changing GP and/or finding a specialist clinic or good physio in nearby health centre or hospital. The LSN may be able to help signpost you. There are health specialists who know about lymphoedema and treat you properly like a person rather than a nuisance but omg they can be hard to track down.

As morganite says we are all here to support one another xxx

[nicolams]

hey there, I felt so much better when i got to the specialist lymphodema service - at last someone understood - hope you can get better help - you deserve it, we all do

[LymphedemaGirl]

Hi there, well done for taking matters into your own hands and fight! There is a lot that can be done, but you must find a proper lymphedema specialist or a a physiotherapist specializing in Lymphedema. Also, it is crucial that you find a really good fitter as it is very important that the compressionstocking fits perfectly.

Good luck to you.