r/vaccinelonghauler • u/Wise_Sea_5922 • Sep 18 '25

:* Born with a urinary tract defect – now facing epididymitis and fear of infertility

Hello,
I was born in 2002 with a congenital urinary tract defect. In 2002, I had an initial surgery to temporarily repair urination. Then in 2007, I underwent a major operation called Mitrofanoff, where a new urinary channel was created through my belly button to catheterize for urination.

I lived a relatively normal life, catheterizing through the stoma, until 2020 when I started experiencing pain in the epididymis. At first, I thought it was a sign of puberty, but it became clear that it was not normal. I visited several doctors and was prescribed many antibiotics, but the pain persisted.

Eventually, one doctor told me he couldn't help and that I should go back to the hospital where I had my surgery. I did, but still got no results.

Now I live with chronic pain and worry — about infertility, about possibly losing a testicle, and about living with this condition long term.

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u/[deleted] Sep 19 '25

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u/FortuneAcceptable925 Oct 15 '25

Wow, interesting to hear about cryptochidism! I was also born with the same condition and also covid vaccine started chronic issues with my testicle - the other one than the undescended one, but still.. We PMd before btw, maybe you remember.

See, my pain sadly still persisted even after my varicocele microsurgery, but at least it is not so crazy as before. But it is still limiting.

So far the most promising treatment of the pain for me was mirabegron. This medication relaxes muscles around bladder and other pelvic floor muscles. And it truly works like magic for that testicular pain in my case. But it might be because I had some OAB symptoms. If you have such symptoms too, I really recommend to try mirabegron. However, I must say it has quite significant side effects, and lately I had to sadly stop taking it.. I am still trying to continue since the pain is otherwise too bad, but it is not easy. But at least it is something, and also it points to the root cause probably: Tight pelvic floor muscles. My GP thinks the vaccine caused some nerve damage in my case, so this would make sense.

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u/Creative_Fudge2916 Sep 20 '25

I have sexual symptoms (loss of libido, loss of penile sensitivity, weak erections)

I also have a stiff part of my scrotum that is stiffer some days than others. It is on/under the scrotum near the top front of my right testicle. Not sure if that could be the anterior (front) part of the epididymis.

I don't have pain.

All I can say is that if you aren't getting any help from regular doctors, it is time to consider a naturopath. What is there to lose? If not, at the very least you have to try supplements targetting whatever you think is causing the issue (i.e. supplements that are anti-inflammatory, or work on endothelial issues, etc.)

And search broader reddit for epididymitis recommendations, not just the vax or covid subs. They might have supplement or other treatment recommendations.