Well diagnosed with Lymphoedema last week, which has hit me hard. I also have bladder issues so it feels like It’s one more thing to deal with.
It sounds mad,but I am always walking around barefoot and walking along the beach is one of my absolute favourite things to do.I just feel like cancer is taking more and more away and my usual positivity has deserted me right now.I know things could be way worse so I feel guilty for moaning about it. All I can see are the negatives right now.
May 19 smear
June 19 CC diagnosed
CT/ MRI
July 19 EUA - into parametrium
PET scan
Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy
30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads
16.08.19 op - postponed
21.08.19 Radical Hysterectomy
Nov19 ISC bladder issues
Diagnosed with Lymphoedema
You and me both mad then: walking on the beach occurred to me as well. And I've moaned lots! On the plus side my shoulder stands have improved considerably etc.
My lymphoedema showed up May 2017, so similar to you it was soon after treatment.
I'm hoping that you have been referred to a lymphoedema clinic or such like. It's best if you can get prompt advice and treatment. I have found the Lymphoedema Support Network (www.lymphoedema.org) excellent for advice and getting support.
Thank you so much Jazza for your reply. I really, really needed that as I was so low with yet another thing to deal with. I see from the signature that you will of course ‘get it’ and you have no idea how much that helped. Just knowing I was not alone in thinking like that about it all really helped so thanks so much.
I have been referred to a clinic and am doing as much self care as I can - skin care, walking, cleaning any scratches etc. I’m scared it will affect my life drastically but from looking at the LSN website it might not!!
I have had lymphodoema for more than twenty years. I have oscillation therapy once a month and wear compression garments. It's ugly but it doesn't stop me doing anything. I am alive and I like that!
Thanks so much Karen - it helps to know you can get on and live the life we have been given - tights or no tights !!! Will look into the therapy you mention too. Xx
I'm exactly the same. I had my RH 5th jan have lymphadema in my groin and top of my legs and ongoing bladder issues which looks like nerve damage where I don't fully empty my bladder. I've been n antibiotics since March. Can I ask what your bladder issues are? I was hoping for a solution but doesn't look likely. X
Think I may have lymphoedema as well although not formally diagnosed yet. I have swelling in my lower leg, ankle and foot. Been put on antibiotics as ended up with infection in the leg, which has improved but I am seriously struggling with my ankle and foot. It is so swollen I can't put a shoe on. Has anyone got any suggestions that I can try to try and alleviate the discomfort? Everything I have tried doesn't work - increased fluid intake, leg elevated, pillow under leg when sleeping. My leg and foot is so stiff and tight I can't handle it, had a breakdown yesterday with it, it's really getting me down . x
T White - we are so similar! My Lymphoedema is in groin and top of leg. Bladder is the same - I am doing ISC 4 x a day and have had two UTI's requiring antibiotics already. I am hopin that it improves enough to drop one ISC and try and at least get my poor bladder working properly again. Just when I think I have done it I got a UTI. I am doing pelvic florr exercises like crazy to see if that helps!
Dee - Poor you! It must be so frustrating that no matter whet you do its not helping.It does sound like lymphoedema. Have you been referred to a lymphoedema clinic? Try and get your nurse of GP to do that as it takes a while (I found) and I have now have compression tights which help. You are doing all the correct things to help it out if it is lymphoedema and I can't suggest anything more really. I was told exercise is good, but to build up slowly and if I get swelling to slow down as its a sign I/m doing too much. The Lymphoedema Support Network helpline were fab and gave good advice, so you could try that.Fingers crossed its not lymphoedema after all and goes away of its own accord.
Good luck with it all ladies and lets support each other on here as much as we can.xx
Another useful technique to help with self managing lymphoedema is simple lymphatic drainage (SLD). If your lymphoedema clinic hasn't taught you or if you haven't yet attended a lymphoedema clinic then the lymphoedema support network (LSN) will be able to advise. The LSN has some on-line videos including one for SLD but I'm not sure if you need to be a member (only £15pa) to access them - maybe call their office if interested.
I've also got bladder issues; I've been self catheterising since March 2017 - will probably need catheters for the rest of my life. I've seen a few urologists and the consensus of opinion seems to be that bladder retention, due to nerve damage caused by RH surgery, can take up to a year to resolve but is unlikely to improve after that. Sorry, I hope this isn't too scarey.
Take care all
xx
P.S. Dee78: I've got lymphoedema in my lower abdo and leg - including lower leg, ankle, foot so I know where you're coming from with that. I couldn't manage without my compression toe caps and compression stocking - fitted and prescribed by a lymphoedema clinic. The sooner you can get treatment the better.
. x
