Abdominal discomfort and stomach reflux with lower leg lymphoedema

[Nins]

Hi. I have secondary lymphoedema in both legs with the left being the worst. I was treated surgically for cervical cancer almost five years ago and have been battling this ever since. I wear very high grade compression Elvarex tights (class 2), thigh high (class 3) and toe glove (class 1). I have a lot of fluid and fibrosis and there is at a minimum a 50% difference between my legs. I am not receiving MLD as it is not available publically in my treating hospital or basically anywhere within a 100 miles radius of me (in Ireland) and I have already spent thousands on private treatment over the last few years and I am broke with it! The last (private) session of MLD I had was three months ago and that was the first in a year. I have been to the Foeldi Clinic in Germany almost two years ago and had great results, but alas, nothing since!

I have been having really sore and uncomforable symptoms the last couple of months that have gotten worse in the last two weeks. Basically, I have real pain in my left flank and lower abdomen, back ache and discomfort down into the top of my left leg. I have also been having really bad reflux the last couple of months and someone suggested it may be the pressure of my tights around my tummy. This is worst when I am sitting. It's gotten so bad I can only sleep on my back. Worst of all, I have a desk job! I have spoken with my consultant who is scheduling an MRI which is a relief.

I am wondering if anyone else has had similar symptoms. My consultant knows/ has seen very little of lymphoedema. I don't know when the MRI will take place and in the mean time, I'm really concerned. My private MLD physio will not treat me if there is a risk that there is anything going on internally so I'm at a loss as to what I should do. My instinct is that this is something to do with the fluid in my belly and the pressure of my tights. However, I CAN NOT avoid wearing my tights - I have rapid refill and without MLD available to me, it would be a disaster.

Any advice?! Thanks everyone.

[lovesradio]

Oh Nins I am so vexed for you that you cannot access MLD without paying for it and that you are getting other problems possibly as a result of the compression system. Could you go back to your lympho specialist who sorts out your compression and see if they can offer any solution, or make slight change to the tights? Good luck

I sometimes think that the treatment for cancer just has endless knock on effects as I have just been diagnosed as having a degree of osteoporosis as a result of 5 years on tamoxifen and the prospect of 5 more on Letrozole. So now I have lymphoedema and osteoporosis apparently too, more tablets to take etc.........

[suzie_danger_girl]

Bonjour *waves*

Don't take this the wrong way but I feel a sense of relief reading your post, because finally someone has the same issue as me!

Let me tell you what I know. I went and had an mri scan under dr mortimer, I paid privately. There is lymph on my tummy, I look 9 months pregnant on a bad day. Still I much like yourself get no treatment, I echo yiur story I can't pay for any more mld privately.

What I have found out therefore through trial and error and bits of medical info is this.

There is a bloody great set of lymph stuff that meets in your tummy, just below the bottom of your rib cage. When this gets blocjed and packed with stuff it causes me the folowing problems; difficulty breathing, difficulty eating, acid reflux, and depression - yes really.

Theres only two ways to get rid. Method 1 you know, and in the abscence of mld I gently press my hands into this area and push it towarda my heart. If you can get a pal to do it they can use the heel of their hand to slowly push as if pushing treacle up towards th centre of your rib cage. I wont lie this is iffy you need to open your lymph pathways first, like me you might find you still wind up with a massive neck and you'll have to get that out too.

Method 2 is deep breathing. But you need a lot. I have 3 ways of doing this, 1) choir- I do an hour and a half of rock choir once a week, it makes things better and its fun! I reccomend 2) swimming including lots of undrwater if you can, I do sychronised swimming it works and its fun, theres a pattern here. 3) pilates, it seems to open all the pathways, more then even they realise for lymph.

I empathise so much because I've been there and felt the panic and they don't know the answers in the nhs I'm afraid. But if you can get it going you will know, as I say something happens there, it traps hormones or something, and when you feelnit release you feel feel a rush of energy and happiness. I have literally been off swimmkng for 4 weeks now over summer and I'm huffing like a steam train and cant eat again. I am back tomorrow thank god, I can't live without it now. I hope any of this helps you, let me know how you get on. One last happy note the reason I get this is the lymph moved by your tights is moving up, if you can release this blockage it will gradually get out. In the lsst 5 years I've gone from a size 4 tights to size 1 now. Keep going you can do it without the mld, its just slower is all. As my bloke says it might take years but you will get there xx

[lovesradio]

Thanks so much bigleg xx

[Squinny]

Ladies this may well be the most interesting thread I have read on here and I have learned something from all of you who have commented so for that I thank you all. I have leg lymphodema post cervical cancer treatment and like you all have had mixed treatment experiences. I now pay for Mld but it's worth it both physically and mentally, but on a bad day I really feel that cancer was just the start, a battle I had to fight but at least had a chance of winning but with this its just so difficult to plan as the smallest change in diet, activity, weather or any number of other relatively small things can change everything.

Staying positive is the only option, look after ourselves best we can, keep asking questions and seeking good care and talking with great people like you who understand and offer support.

Wishing you all a great weekend.