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My story epididymectomy


#1

First post here guys…been lurking/reseaching forever. Any opinions welcome. So heres my story.

Never had a vasectomy but hope yous dont mind me posting as my situation is very simular.

Not sure what started pain…took a few hits there over the years as everyone does and usually weight train 4 times per week…my have somthing to do with it but was never sure

First started getting aching,clamping,draging
Pain in left testicle april 2014. Pain was there all the time when sitting and epididymis was tender always when touched and made it pissed off,
Back then it was sore when sitting and wearing jeans or anything that wasnt loose fitting.

Went to doctors then urologists and got the usual epididymis diagnosis.

Given antibiotics 4 week ciproflaxen.
No effect pain continued for months.

First 8 months or so i was getting the aching clamping feeling always when sitting. When standing sometimes it would randomly flair up but alot of the time I was pain free when wearing loose fitting trousers.

So over the next couple of years pain would settle to a certain pattern

*left testicle tender to tough around epi and touching testicle would aggravate

*Sitting would cause pain sometimes maybe few hours per week but not all the time.

*Strange thing…pain would always come if sitting with feet up on sofa as in reclined.

  • Have to sleep flat on back…pain would come usually when turning to side

  • Sex and ejectulation pain free…would sometimes flair up a little afterwards but most times fine.

So after nearly 4 years of living with this and years of urologist appointments it was effecting my day to day life enough to push me to get an eppidiymectomy done on 3rd jan 2018. Now I rembember at the time saying if I had a million pounds i would give every penny to fix this. So this was really pissing me off.

NOW…

Obviously I was made aware pre op that sucess rate wasnt great and the risk pain could get worse. The was no other surgical options given by my uro it was either epiddiymectomy or live with it.

Pain after op next day was very bad was hell to stand and sore enough recovery for first 2 weeks.

By day 17 the serious post op pain was gone and was able to sit in car and go shopping, auct was around 95 percent pain free for 3 days or so. At this point i thought maybe its worked.

Then that night pain comes back…feels like pulled muscle feeling in left testicle very simular to flair ups I had in the past…and simular aching and thobbing to what I had pre op

Over the next week or so the pulled muscle feeling gradually goes away, and for following weeks to come im with simular pain to what i had before localized to bottom of left testicle where the epididymis was or where it was cut joining the vas.

No pain on ejuculation and cant say of it makes pain worse or not

So currently I am now in pain 24/7

When standing usually throbbing/aching 2/10 to 4/10

Cant sit all makes pain go 6/10 then takes hours to settle after

When going to bed and laying flat usually 2/10 and sometimes nearly pain free after i fall asleep

So at the moment holding any weight seems to worsen it…standing is the most comfortable…sitting is the worst…laying not to bad.

Im just over 12 weeks post surgery and finding it very hard mentally and physically to cope day to day…would love to go back to my life pre op.

Waking up everday knowing i will be in pain all day isnt easy and losing hope that i will still recovery more…i spoke to surgeon at 7 weeks post op and he said was still early days and things could still improve.

Sorry for long post so much info I could write all day…

My main question I have and anyone that has had epididymectomy or not…how long would you give it post op before giving up hope on it getting better?

Im now on my 13th week of work sick (driving job so impossible), have family and 2 small babys to look after and day to day is very difficult with pain and worry on my mind 24/7.

Obviously I am not going to rush into another surgery because I know there is no miracle fix and the risks involved…i always new this op might fail and orchi has always been something i will consider in future now more so because current pain levels…scared of denervation and dosnt make sence go me as it feels as though somthing is def messed up on that side.

Look forward to any input…


#2

Also have started lyrica 150mg per day last week…will update on this if i get any relief…If I do i will continue to preserve with this as long as possible incase any healing happens in the meantime


#3

This is one hell if a story man, I’m sorry to hear it. No vasectomy, but your in a similar boat as many here.

I too wonder if you had some kind of pre-existing injury, perhaps to the vas, or to the epi, perhaps blockage, or scarring as a result of an injury? Hard to say, maybe none of that is relevant.

In hindsight, I’m sure you have wondered if TRT, or papaya seed powder may have been worth a shot prior to the epididymectomy. Perhaps you weren’t aware of those options beforehand.

I don’t think I have much input. When I read your story, nothing seems to click, no rhyme, no reason far as symptoms, triggers, etc. The part about more pain when feet up makes me think blood flow, but I’m not sure about that either.

I’m not sure how you will resolve your situation. Like you, I’d be thinking orchiectomy, but only as a last resort.


#4

Thanks for reply, yes feet up part aways baffeled me aswell. I was certain pain was localized to epi i could pinpoint it so i thought there was a good chance removing it would auct work.

In regards to a pre existing injury only possible thing could be a squash I rembember during sex which was painful after for an hour or 2…but this would have been maybe 2 years before and i doubt its related but il never know for sure. The pain just started all of a suddin one day as a deep dull ache while sitting.

In meantime I can just hope that maybe im still healing and one day i will wakeup and this nightmare will be over. I wont give up until I get me live back again.


#5

Thanks for sharing your story with us. It doesn’t matter how you ended up with pain of course and you will always be welcome here. The corrective procedures/protocols for treating people who end up with chronic testicular/groin pain is the same and it seems the outcomes we see are similar no matter the initial cause of pain, even if it’s idiopathic. Probably the most severe cases of chronic pain on this board is another guy with idiopathic pain that went the spermatic cord denervation route.


#6

Yea, your story is a bit baffling, but stuff like this does happen to someone.

Theres another story on here about a guy that never had a vasectomy that had/has serious pain very similar to pvps, specifically the nerve damage end of things. Unlike you, he seemed to narrow down the possible cause of the majority, or all his issues to straining on the toilet after he took some pharmaceutical pill that had been prescribed to him.

I used to experience more pain, specifically with my left hamstring, left buttox, left sciatica stuff when I would lay on my right side after I had an obstruction type varicocele corrective procedure. If I would lay on my left side, it would tone down significantly, or go away completely. I always wondered, or figured it was because my heart was higher than the obstruction if I laid on my right side. IDK tho.

I still sleep with a blanket that I can adjust accordingly in-between my knees, and legs at night to take some pressure off my nuts, and scrotom in general while I sleep.


#7

Getting alot relief on 75mgx2 lyrica per day.
It auct knocking most of the pain out for around 90 percent of the day…except for while sitting its still sore.

Dont want to be stuck on this med long term as im sure it f**ks with you brain in the long run. Going to try cycling off every few months to check for any improvment. At least its bought me some time out of the unbearable pain.


#8

I am 4 months past my bilateral epidiymectomy and I don’t have that much improvment. It’s less sharp and I think less constant than before but not enough to call it a success. I tried lyrica in the early days and it didn’t do jack, can of course try it again but I think in the end if nothing improves in the next 4 months a total castration will be immanent.


#9

Im 3 months now and still no improvement…pain am left with is much worse than before op and its now ruining my life. Now that i have got enough relief with lyrica, for now i will try to hold of for at least 1 year before I go private and push for removel,just to make sure it dosnt improve on its own as my current uroligist says it could still improve with time.

After surgery its seems my testicle is pexed/stiched in place, i assume its not dissolvable. Did you surgeon do this same way and do you know if its still possible to have testicle removed with radical inguinal orchiectomy when its attached this way? I was thinking this my have to be detached via scrotum first. I was not aware this was going to be attached like this before surgery and I forgot to discuss this with urologist at my post surgery follow up.

Hope you pain will still improve as your pain is unilateral it is an even bigger decision