Hydrocelectomy with multiple recurrent hydroceles

I wanted to share my rough story for anyone considering or had a hydrocelectomy.

Sorry for the long post but hope these details help someone.

Had a R side hydrocele since my teens but only in my 30s it became large enough and a bit bothersome but not painful, size of a small/medium avocado. Also on L side but small, not worth touching. Decided to undergo surgery after talking to a doctor that said it's very routine with very small chances of scarring and chronic pain. He was recommended as highly experienced surgeon - California Bay Area, (Kaiser hospital)

First surgery,

Late April 2023 - Everything went smooth, 230cc out, no drain, pain first day on heavy meds, almost nothing the next day.

Day 4: no pain except when walking but swelling almost gone. Noticed small fluid bubble above the testicle.. figured it's normal and will go away over time as they said.

Week 1-5: I was thrilled and felt awesome, lots of light but not too much walking. Zero pain except maybe brief incision spike pain occasionally, normal.

Week 6: after walking about 4 miles my inguinal, hip and abdomen area hurt! More like burning sensation in muscles but wasn't that.

Week 7: Massive pain! swelling in scrotum, cord pain, abdomen pain! pelvic muscle pain, fluid rapidly coming back! CT scan shows nothing in abdomen! Utrasound shows septated and loculated hydroceles! about 2.5x larger than primary one. My urologist says take ibuprofen, wait maybe it will go away on its own we see it all the time.

Aspiration,

Week 9: I changed my urologist! Told me I might need a repair surgery but best to wait for 4, 5 months since first, so tissue heals before going in again, had an aspiration to buy some time.. felt a bit better! but fluid came back in 5 days completely and pain beyond imaginable started. 2 days later...

Emergency Room,

Week 10: Pain was too much 9/10, dull constant pulling and spreading, didn't sleep for five weeks! 1 hr per night max. My heart started skipping due to no sleep, anxiety, ibuprofen for a month. It truly felt like I was tortured in Guantanamo. Ultrasound shows epididimytis on top of everything, got antibiotics. Both urologists failed to diagnose with now very clear symptoms.

Week 11: antibiotics helped a bit but in massive pain still. We scheduled surgery for next week, brutal pain in cord, scar stretching and abdomen/groin. not ideal to go in but I was that close from suicidal.

Second surgery:

Late July - three months later, much more aggressive than the first one. Over 400cc out. They said loculations, inflammation, but was "successful". No communication found with the abdomen. A lot bruising and swelling also hard scrotum as a rock. Had a drain for 6 days but almost nothing came out. Thankfully only pain I had was from surgery itself now, and that is a walk in the park to compare.

Week 4: spent full 4 weeks in bed to heal properly this time, bruising and sweeling and hardness still present. Moment of shock, noticed a tiny bubble up top, just like after first surgery.

Week 8: today as am posting this: Post op swelling and bruising is largely gone, almost no hardness but nightmare scenario seems to be starting again...... Fluid buildup is slowly back and I am now about the same size as before first surgery, and had a flare up in epididimis again two days, on antibiotics again. Abdominal pain around inguinal canal mostly present but mild. Doctor said wait it out it might go away, which is highly unlikely considering my case, and can't go in 3rd time. Not working, not walking much. Life is fully halted compared to before, but at least not in that Guantanamo pain (for now).

Completely devastated what next weeks and months will bring. I can't find words to describe the agony and mental toll this has on me and my family, 5yo daughter I cant take anywhere, and inability to work, exercise. I've talked to 8 urologists, 3 of them abroad in europe and they are all clueless what is going on with such fast recurrences and how two experienced surgeons were unable to fix me. Best guess was that there might be some invisible connection they never saw in their careers, or they did a terrible job both times. Waiting and hoping it will go away on its own but realistically it's unlikely. I might fly back to europe and find (private practice) help there, US healthcare is a disaster here in California unless you somehow have access to UCSF, Stanford or other top tier academic providers.

Conclusion and advice:

I truly wouldn't wish this experience on my worst enemy. Don't mean to scare to death anyone, since most people do seem to get out on the better end, maybe I'm anomaly, but there is no such thing as routine surgery! If you really have to do it - do it. But if it's not too big or soon to have or just had kids or some important event, etc, postpone! Find a big gap in your life to do it if it goes bad. Although hydrocelectomy seems statistically successful, complications are much more higher then presented. After reading some clinics and publications reporting over 30% recurrences after longer period of time.. Don't buy anything from urologists and do your homework, ask billion questions, insist for million tests, to make sure they can work with you if things go bad.. mine are now barely there to answer anything or see me now. In retrospect, I wish I tried aspiration or light sclerotherapy before surgery.

For those of you thinking doing it, I can say incision and scar, and actual surgery is the very last thing you should worry about. Scars are really barely visible after 2months+, and you'll forget surgery and post op pain very quickly. Also, hanging scrotum improves quite a lot over time. Real concers is " am I fixed now" and that is a gray area for a lot more people than you think.

What a terribly designed and flawed external organ we have.

Best of luck and wish you all tiny happy nuts.

Some additional and random facts and factors:

• I'm 39yo, 175lbs, was 187lbs, lost due to anxiety and no sleep
• High income and edu
• Sitting job
• Was very physically active, regular high intensity basketball, snowboarding, woodworking
• Perfect health before 1st surgery, no conditions or ant symptoms
• 500+ hours spent reading, researching and learning entire anatomy to understand and communicate with urologists.

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