Bilateral inguinal pain without lymphadenopathy

[CLLmoxie]

I have CLL with my main symptom being severe fatigue for which I will receive treatment soon. I have also had bilateral inguinal pain - infrequently at first - and now about 3-4 X/week with NO lymphadenopathy on CT scans. Any ideas?

[Jm954 Administrator]

This might be one of those situations where it's understandable to think a symptom could be due to CLL. If you have no enlarged LNs in that area I would see your PCP/GP and discuss it with them.

It sounds very uncomfortable and I hope it's sorted for you soon.

Jackie

[CLLmoxie in reply to Jm954]

Thank you - my PCP is worthless lol - will see what CLL treatment does to that symptom and go from there. My CLL specialist is a true gem.

[BeckyLUSA]

One of my reasons for treatment was for pain in lymph nodes that were only slightly enlarged. I had very painful nodes in the chest and underarm area. At times I could not even get comfortable to sleep. This has almost completely disappeared since treatment started. Every once in a while, though, I will still have some transient node pain. Don’t understand it, but my specialist says it sometimes happens.

BeckyL USA

[CLLmoxie in reply to BeckyLUSA]

Maybe that is my case - the timing fits with the worsening of my fatigue - but the CT showed no node enlargement - hope the treatment takes care of it.

[Indie1234 in reply to BeckyLUSA]

That’s strange you mention inguinal lymph nodes. I’ve just had a CT scan and it showed multiple chain of enlarged inguinal nodes but I was unaware I had them. Gave me no problems. I have abdo discomfort and along with inguinal nodes the CT showed multiple enlarged para aortic and mesenteric nodes. I’m W and W 11 yrs now. No treatment. I see Haem/Onc next week.

[CLLmoxie in reply to Indie1234]

Do you have a CLL specialist rather than hem/onc? Where do you live?

[Indie1234 in reply to CLLmoxie]

Hi CLLmoxie, I’m in Australia and I see a Haematologist/Oncologist. She has written papers on CLL, but I’m not sure if that makes a CLL Specialist that everyone talks about. When I look it up there doesn’t seem to be any Drs listed as CLL Specialist. It only says Haematologist or Oncologist.

Indie

[CLLmoxie in reply to Indie1234]

In US there are hem/onc that may specialize in an area but still do a variety of cancers. Then there are some more specialized doc that do only CLL and very closely related conditions. They are more knowledgeable about the latest about the disease and run the clinical trials etc. Mine has a team of other specialists that CLL patients often need - like dermatology and ENT etc and they collect patient data too.

The lab, pathologists and everybody just have an eye for CLL.

If your doc has written papers on CLL, then that is much better than a garden variety hem-onc

[CLLmoxie in reply to CLLmoxie]

I found a list in Oz and took a screenshot but do not see how to attach it here

[CLLmoxie in reply to CLLmoxie]

I made it an original post and put screenshot

[sophia60]

Strange that you say this.............I have pain in the crease of my groin, between my thigh and my groin on both sides. It feels like it wants to pull me forward to bend over. It feels like I need to constantly stretch the other way. I have weakness there too when I stand or walk. Actually, I was in physical therapy for this as they thought it was related to spinal stenosis. It may be. It was in exploring this pain that I had an MRI that showed abnormal nodes in the illiac chain area and then blood tests and then the diagnosis of cLL However, I don't think those nodes are related to the groin pain. No one ever seems to connect the two.................but I always wonder.

[CLLmoxie in reply to sophia60]

Yes, that is curious - a node could possibly press an a nerve and give referred pain too but probably not on both sides. Are you on watch and wait? The most important advice I (and others here) can give is to see a true CLL specialist - NOT just a regular hem/onc - at least to verify everything.

[sophia60 in reply to CLLmoxie]

Yes, I am on watch and wait. I was diagnosed in January of 2019. I will be seeing Dr. Byrd at The James Cancer Center at Ohio State in July. I will feel better after I see him. I have seen my local hematologist a couple of times.

[CLLMoxie2 in reply to sophia60]

He should be fantastic! I waited a year before seeing Dr. Awan. The focus on YOUR DISEASE that the specialist brings is SO much better. Please keep me posted.