Lymphoedema post Radical Trachelectomy and Pelvic Lymph node disection

Hi Everyone

I had a trachelectomy and pelvic lymph node removal for stage 1b1 CC. I am now 9 weeks post surgery. I am experiencing some heaviness in my legs and very slight pitting oedema. I notice that my clothing marks my skin easily. It has pretty much been like this from Day 1 post op. I was referrred to the lymphoedema nurse to be assessed but she really was not helpful. My nurse says it is something that still may improve as the body settles down. My consultant told me pre-op that I may notice some swelling around my ankles etc. I was told there was a very small chance (around 5%) of developing lymphoedema.

 

Pretty much I am just wondering if there is anyone who ever experienced the heaviness or any slight swelling or being marked by clothes at al post-op? Or whether it was something that settled or what you did? I have been very careful to follow all the tips around preventing lymphoedema. Just wondering if there is anybody in the same boat or previosuly has been?

 

Thanks heaps xxx

Hey, 

 

I had swelling for a good few months around my pelvic area and top of legs, it has settled down for me. the one thing I have seen from people in simular situations is that getting on top of it early is the best way to minimise it all. A lot of ladies say yoga/ pilaties are really good along with walking. It might be a good place to start just in case it is lymphedimia (it most likely isn't).

 

From a personal point of view - I now do yoga for both mental and physical gain and I haven't had any swellings since...

 

Amy

Hi there, I'm almost 3 months after radical trachelectomy, and still swollen around pelvic area and upper legs. It's normal as per doctors, will take some time to settle down. I though will ask if i can do  special massage to help the process go faster ...

Thanks for your reply. Do you also have any swelling in your lower legs at all? Or any heavy feeling in your legs?

The nurse did give me some exercise to do. Not sure if they are helping at all but worth a go. If you google this, you will find lots of exercises. Also massaging the area lightly with strokes in the direction of the hip is apparently good.

I hope it improves quickly for you.

Thanks for your reply. Do you also have any swelling in your lower legs at all? Or any heavy feeling in your legs?

 

I have read lots about swimming and yoga etc being really good to get on top of any swelling. Can't wait to feel up to that!

Hi

 

i have no swellings now. Sometimes if I do some weight training they swell a little (only I notice) for about an hour then it goes back down but yoga has been a god send. I would highly recommend it! im sure yours will go down though. I was told it can take 9 months to a year for our bodies to get back to a kind of normal. 

 

Amy

I reckon yours will most likely settle down, your only 9 weeks post op. I started going for short walks and gradually building the distance up. Do the exercises the nurse gave you and start doing gentle yoga stretches. Don't over do to start with, I know it's frustrated but time really does go quickly. I didn't get any swelling in lower leg but I have in my pelvis which I noticed got worse about 12-14 weeks post op. They've said it's mild lymphoedema but it's not pitting and it comes and goes. Elevating your legs will help for short periods during the day and lymphatic massage works well! Maybe treat yourself to a proper professional lymphatic massage sometime! Also don't shave your legs! I was told about this for my bikini line but using hair removal cream actually gave me ingrown hairs so I've gone back to shaving!! 

 

Hope your recovery goes well, one thing I've had to learn is not to be hard on myself, I just wanted to recover to quickly and I think I pushed myself too hard - take it easy 

xxxxxxxxx

Hi GNZ,

My legs went a bit oddly heavy post op but they're fine now. It took a while, I can't remember how long exactly but the body usually sorts itself out in time.

Be lucky :-)
Tivoli