Lymphoceles

Hello all,

I have visited these forums almost daily since my diagnosis and have drawn immeasurable strength and support from the information here, particularly on the bad days. But this is my first time posting and I’m hoping someone has some experiences to share regarding lymphoceles.

Right as I was due to return to work and get back to my new version of ‘normal’ I ended up in my local hospital with severely infected lymphoceles (I thought I had appendicitis!).

Turns out I have three of them. All around my bladder. My local hospital was able to treat the infection and a week later I’m back home.

However the lymphoceles are still there. They attempted ultrasound guided drainage twice but it didn’t work. They are causing a lot of pain, bladder problems and weakness in my left leg (I presume they press on some of the nerves).

So I continue to be off work (and back to slowly going crazy at home) and I don’t really have a clear treatment plan. I have an MRI (3 month check) in a week and a follow up in the Marsden in 2 weeks so I expect to know more then.

Does anyone have any experience with these? Is the only option surgical, are there other treatment options? Do they sometimes disperse over time? Can I expect a gradual improvement in pain/other symptoms?

I have asked my CNS who said to wait for my follow up. I know it’s only two weeks away but as always the waiting is tough. I just want to know when I will be well again. Thank you in advance for any info/shared experiences :slight_smile:

Abby

Wish I could help you Abby but I don't know anything about these, sorry. Hope it all gets sorted for you really quickly though.

(((((HUGS)))))

Be lucky :-)
Tivoli

Thank you for taking the time to reply Tivoli :)

When I get more info at my follow up in a couple of weeks I'll pop it here so if people search for the topic they might find it helpful in the future.

That would be really helpful Abby :-)

I've just had an mri which detected some fluid, likely to be a lymphocele. My consultant is now seeing me 2 months sooner, in June rather than August, and I'm not sure if that's why! I'll  e following any info you gather with interest x

Hi Blackberry,

Thanks for your reply. Sorry to hear that you may have a lymphocele too. Do you mind if I ask - is it causing you any problems/symptoms? I get the impression that they are normally not a problem and often get reabsorbed but it's all supposition on my behalf atm. 

I'm glad you have a follow up in the diary and I hope you get some answers then. I'll let you know if I get any useful info at mine!

Hi

So sorry for not posting earlier, I don't get the time to come here so often now.  I had a MRI at my 12 month check and 2 lymphocele's were identified.  I was really concerned at the time but my consultant was reassurring and said I shouldnt worry about them.  He said just to get in touch if I had any pain or problems, apparently sometimes they just disappear on their own.

I had another MRI at the 2 year stage (last November) and they are still there - no bigger, no smaller.  I don't have any issues and the consultant said he wasnt concerned about them and also said I wouldnt need any further MRI's.

I did have an abscess that was caused by an infected lymphocele which did result in surgery not long after my radical hystercetomy but apparently occurrences of that nature are extremely rare I was told.  Most infections are cleared by drainage and antibiotics. 

I'm guessing they will wait a short while to see if you improve, really hope you do.  Let us know how you get on.

Hugs, Chery,xx

Hi Cheryl,

Thank you for your reply :) and glad to hear that you no longer need MRIs following your 2 year check!

It's reassuring to hear that there was no change or deterioration to your lymphoceles and that your doctor wasn't worried.

At my follow up I was also reassured that they are not generally a problem and said that they would not operate unless there was a infection not responding to treatment.

Unfortunately my lymphoceles are still causing pain and some bladder problems. Not every day though it does vary - the more I do the worse the symptoms are. Despite the remaining pelvic swelling (4 months post op) I've been told this is not necessarily lymphedema and may completely resolve over time.

I was told that lymphoceles are usually gradually reabsorbed by the body (but can take years) so symptoms should remain constant or improve but not worsen. If they worsen that is an indication I should speak to my CNS. When I asked what I could do to improve my symptoms I was advised to use lymphedema treatments/prevention techniques - MLD, SLD, compression, pelvic floor exercises and core strengthening exercises like pilates. So I'm going to give all that a go and see if it helps :)

Thank you again ladies for the info!