Painful lymph nodes for +15 months - I don't know what to do anymore

Hi everyone,

Sorry for my lengthy post (and my English – it’s my 3rd language but I will really do all my best :blush:).
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 on 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 pretty much every day since the pain started.

I feel very desperate and frustrated, and my move from Canada to the UK is adding more stress to the situation … and I’m scared I have lymphoma or another 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).


Oh @Zach welcome to the UK and our forum.
What a diary of events.
I do not know if you have a doctor in thee UK bur perhaps that is your next stage and then continuing your medical tests and investigations.
I hope others might be able to share their own experiences.
Please do look after yourself the emotional side can be so tough, I expect you are anxious with the not knowing.

Hi @Zach snd welcome to the forum.
I can hear from your post how anxious and frustrated you are and the worry your symptoms are causing you.
Are you under a UK hospital? Are you able to ask for a second opinion or speak to a patient liaison service?
Please keep us updated on how you get on and take good care of yourself.

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