Painful lymph nodes for +15 months - I don't know what to do anymore...
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Hi everyone,
Sorry for my lengthy post (and my English – it’s my 3rd language but I will really all my best 😊).
I’ve been reading posts here and there, but I couldn’t find anyone who has been through the same experience as mine. So, I thought I might share my long-time story.
It all started in May 2022, I (Male/30yo) started getting aching and stabbing pain in the right side of my groin which I thought was a muscle pain in the beginning. The pain started getting worse and it was then that I realized it was coming from my lymph nodes (4 lymph nodes exactly).
May 2022:
Visit to my family doctor who ordered an ultrasound and blood tests (CBC, urinalysis, STIs…). Everything back normal, including the ultrasound that showed small lymph nodes possibly reactive.
August 2022:
The pain was still there, I returned to see my family doctor who decided to go for a CT scan.
CT scan done on August 9. Lymph nodes unremarkable but the CT scan reveals a small right-sided varicocele.
Got referred to a urologist who dismissed me immediately because, according to them, there is no possible way the small varicocele could cause sore lymph nodes.
Until March 2023:
I just got used to the pain at this stage. The lymph nodes are still sore, and I decided to go back to my family doctor because I started feeling desperate.
Family doctor refers me to the General Internal Medicine (GIM) of one of the hospitals in Toronto.
Mid-April 2023:
First appointment with the GIM doctors: they run many blood tests (CBC, Immunology -CCP, ANA..-, ESR, eGFR…). The blood tests came back normal.
May 1st, 2023:
New ultrasound done by the GIM: fatty lymph nodes seen in the groin bilaterally, largest measures 1.7 x 0.6 x 0.6 cm on the right and 1.5 x 0.5 x 0.3 cm on the left.
They compared the measures to those revealed by the CT scan, and they are grossly stable.
I feel relieved as the lymph nodes are not big, the pain is still there though.
May 16, 2023:
Follow-up with GIM: TB skin test (negative) and referral to another urologist for a second opinion.
End of May 2023:
I started getting the same soreness and aching in lymph nodes of the left side of my groin (I really freaked out!!!).
June 7, 2023:Urologist visit. They confirm that they don’t see any relationship between the varicocele and the painful lymph nodes.
June 15, 2023: call from the General Internal Medicine (GIM) mentioning that they have referred me for a biopsy, but a week later I received another call from them saying that radiology emailed them and emphasized the benign looking nature of them on US (both size and fatty nature). So, they decided not to go for the biopsy.
July 31, 2023 (15 months later):
Follow-up with GIM: reassessment of my symptoms. I mentioned to them that my lymph nodes in both sides are still very sore, and they didn’t get any better.
The aching is just getting worse, and I also started getting an aching pain in lymph node in my neck, but it’s not swollen (probably because of how anxious I have been recently?!).
I GOT DISMISSED, as I don’t have night sweats, weight loss etc. Take painkillers, that’s what I was told.
The pain has been really driving me crazy, and I don’t know anymore what to do. My bad hypochondria didn't help and just got worse over time. I've been pushing and poking the lymph nodes every day since the pain started.
I feel very desperate and frustrated … and scared I have lymphoma or a blood cancer.
I was very positive in the beginning, but since the pain started spreading to other areas, I just feel like my life is not as it used to be. I am in pain every day (physically and psychologically).
0 likes, 1 reply
tar82732 zachary57011
Posted
hi, how did you get on with your doctors?
lymph nodes can come out and stay out. i have multiple nodes that came out during an infection and never went completely down. i freaked out too as i never had them come out before and they just wouldnt stop hurting or go back down and that was over 3 years ago. they can become what is called shotty but they are perfectly normal and it often feels like they are painful all the time because i think they kind of become "primed" and start hurting at the first sign of an infection. reactive nodes can also enlarge quite a bit but painful nodes are good nodes! you have to stop prodding and poking them for a while and see if the pain stops. my experience is they will eventually either go down or stay but become a little smaller.
it seems very likely that you are fine, i think after all this time you would have had something show up in your bloods or have a node become really large if it was more sinister. its really not true what google says about lymph nodes... they really can and do take aaaages to go back down, or not and thats normal too