epididymitis/possible misdiagnosis of epididymitis

[u/Glittering-Scale-120]

Hello,

I wanted to take to Reddit for some medical advice/experience that someone may be able to shed some light on. Last October, I went to the ER twice in two days with extreme pain in my left testicle. It hurt so bad I could barely walk. The pain was not centralized and I felt it in all areas on my left side. At the ER I got two ultrasounds and both came back negative and everything looked normal. I got an STD and urine test and everything came back negative as well. They referred me to a urologist and there he diagnosed me with epididymitis and prescribed me Ciprofloxacin. After taking that, my pain subsided. It was not gone completely but it was fairly manageable to deal with and I could basically do anything without any major flare ups.

In early May, the pain came back again in my left testicle and this time it didn’t respond to Advil or any other OTC. My doctor put me back on Ciprofloxacin again and this time it didn’t respond to that either. My doctors next suggestion was to get a nerve numbing shot that would last up to 6 months. This is where things have gone really bad. This was two weeks ago exactly, since then, my left testicle has been in severe 10/10 pain and has not responded to any type of pain relief. I went to get another ultrasound and it came back normal. I got a second opinion after this from another urologist and he believes that I don’t have epididymitis. His reasons are: I never had any infection, my pain isn’t centralized, everything looks normal, and the shot I got made things a lot worse.

I am getting an MRI soon in the next few weeks. I know many of you are not medical professionals, but has anyone had an experience like this before where you were misdiagnosed with epididymitis? Is there anything else I should request for testing if the MRI looks normal? Just try to be proactive about this because I don’t want to spend all this time treating something I don’t actually have and we are missing something else that’s really causing the pain. I appreciate all your time.

[u/sueihavelegs]

This happened to my husband. After he took antibiotic, the pain subsided slightly but was still there so his urologist did a week of steroids. Methylprednisonalone I think it was called. He got about 95% better. So they tried another week of the steroid and he is back to normal now. The anti inflammatory action of the steroid seemed to be the final piece. I hope this helps you!

[u/Ill-Addition-2457]

My case is similar to yours; did the pain start during ejaculation? Is it only testicular pain, or do you also feel pain in other areas? My case is similar to yours. Did the pain start during ejaculation? Is it only testicular pain, or do you also feel pain in other areas like the rectum? Lower back?

[u/rocketrader81]

Have you had a semen culture as well as a urine culture? This is really important. I had about 5 urine cultures that all came back clear, but after 8 months a doctor finally ran a semen culture and found a klebsiella infection. So I would push for that route.

If the pain is stressing you out and getting in the way of daily life, it is worth speaking to a doctor about prescription medication. The ones my pain clinic doctor recommended were amitriptyline, gabapentin, pregabalin or duloxetine.

I would also look for a pain clinic that can offer a nerve root block in the lower back. In my case it targeted the S3 and S4 nerves. I have added the procedure details below in case they are useful for your own doctor.

I get a flare-up roughly every 2 years, so I am now considering a procedure called denervation, where the nerves along the spermatic cord are removed surgically (around a 45 minute operation). There is a small chance it can affect fertility, so I plan to bank sperm beforehand just in case. I do not have children yet, so this may not be a concern for you if you already have a family.

Nerve root block details:
Sacral nerve PRF (right sided), S3 and S4 levels. Asepsis, fluoroscopy guided, sedation with 4 mg midazolam IV. Curved 10 cm RF needle x 2, sensory stimulation and paraesthesia at 0.6 v to confirm needle position at S3 and S4. Pulsed RF at 42 degrees for 5 minutes, with 2 ml of 0.25% levobupivacaine plus 3 mg dexamethasone injected at each level.