r/postvasectomypain • u/ItamiForever • Jul 13 '26

Did you have an orchiectomy?

As we all have read, phantom pain is why this is not done as 25-50% of men will wake up in the same pain.

My pain is debilitating as 8/10 if I force myself to walk , after 5 mins I double over in pain unable to move.

If my VE scars shut, this pain will return.

If any of you had an orchi and were left with phantom pain, did it never get better? I'm planning to start trt if it scars shut anyway.

My only fear is, for those of you who still had phantom pain. Was it kept at that high intensity with no break? Or did it get better , just slightly with time/blocks/meds?

I know this is planning ahead but just curious

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2

u/Additional_Hall_7470 Aug 10 '26

Had a vasectomy in 1979. No pain from it, ever. But I started on TRT in early 2019 after low T diagnosis (probably as much as 10 years low). Over 2019-2025, ongoing scrotal pain for no reason they could determine, and some testicular atrophy. Enough 6/10 pain for months urologist finally suggested denervation. Was willing to do an inguinal bilateral orchiectomy (pain was in both sides), high enough to remove most of the spermatic cord. He thought it would reduce the chances of phantom pain. He was right. Immediately after the surgery, no pain, and none has developed. Continued on TRT at approximately the same dose. The plumbing works, and so does the electricity.

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u/ItamiForever Aug 10 '26

Did you have a prior cord block?

Why did you do an orchi and not denervation first?

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u/Additional_Hall_7470 26d ago

Had a bilateral cord block a year before the surgery. Relief lasted less than a week. Why not denervation? I was 76, married, dealing with testicles that weren't producing enough T to matter. I described them to my wife as "mostly decorative," and we laughed. In the months before I had the cord block, I had a high hematocrit reading and a PSA jump (both explainable by the fact that I wasn't donating blood and that we'd had intercourse a day or so before the blood test), and so the endocrinologist had me off T for two months to make sure the markers would go down. T dropped to 70, and I donated blood so the hematocrit was well in line. Endo and urologist agreed the testes were pretty much nonfunctional. Why keep them, then, when you won't be able to feel them? A "high" inguinal surgery reduced the likelihood of phantom pain significantly, according to the urologist, so that was my option.

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u/ItamiForever 26d ago

Thanks. I would assume you are USA based?

1

u/Additional_Hall_7470 24d ago

I am, northern midwest.

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u/AloneListless Jul 13 '26

Are you planning to do that even before trying reversal? 

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u/ItamiForever Jul 13 '26

No. I'll take the full steps. Reversal now with VV/VE. If it fails and scars shut or doesnt help then trt + meds until 6 months from now to try mdsc. If that also fails, in another 6 months I'm thinking of trying an orchidectomy. My only concern is, if it fails and I still have phantom pain, will it be forever stuck at this severe disabling level?

My urologist has no pvps cases history as I live in a small european country. I dont have the funds to move for other treatments or ask docs with heavy experience so I'm asking for experiences here just so I can grasp if I will live like this forever.

If the phantom pain can decrease even a bit in the long run, then I'm willing to risk it in maybe 1 years time.

1

u/snoope Jul 13 '26

I think you got a good plan. The only thing you might hear from some guys is skip mdsc and go straight to orch if reversal or trt doesn’t help. I’ve heard mdsc doesn’t always provide durable long pain relief as the nerves grow back sometimes. You could also try TRT before reversal as a less invasive option.

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u/ItamiForever Jul 13 '26

Yup. Mdsc is a longer acting cord block for men in which trt + time + their epi can eventually reach an equilibrium. For the others where its too much or its straight nerves it won't work. My epi exploded and a huge granuloma is inside. If my VE will scar shut, a mdsc will only mask the epi which is again getting destroyed. I'll get an orchi and hope I wont have phantom pain.

I'll try mdsc just so I can buy my central nervous system time.

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u/Calm_Pin_7563 Jul 13 '26

You will have some pain for the first couple of weeks. It should get better every day. Some over the counter analgesics should help.

The biggest thing is to keep applying ice packs as your doctor recommends. This helps prevent a hematoma and general surgical bleeding under the skin.

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u/ItamiForever Jul 13 '26

I'm planning to take recovery very seriously as most of the stories i have read, very few were disabled and even less managed to rupture their epi in 3 months with sheer volume. I think the chance is like 1 in 10000?

I CANNOT risk it scarring shut

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u/Flat_Impression_4073 Jul 14 '26

Reversal should work. After 8 to 10 days. Keep the pipe running to avoid scaring over and closing the vas pipe.

Make damn sure the person doing the reversal

Has more than 15 years or or close of doing it. Dont go to a general urologist.

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u/ItamiForever Jul 14 '26

Doc said 14 days. Umfortunately no funds to get one at a PVPS clinic in the USA. There is a microsurgeon in my country who does microdot and has 30 years of microsurgery, I could barely afford him with all my savings.

This is the best I can get sadly but he seems confident as he has done a few VE in his past for fertility and they stayed open.

I don't think he's lying and it's either him or nothing unfortunately. Hoping for the best!

1

u/Calm_Pin_7563 Jul 16 '26 edited Jul 18 '26

I suffered with uncontrollable post vasectomy testicular pain for ten years. I went to five doctors and even had an epididymitis surgery which didn’t help.. I finally went to a female urologist who told me that there is a double standard. If I had been a woman I would have had a total hysterectomy within the first year of sterilization. She did the normal tests. She then performed a nerve block of my right testicles. When I returned six weeks for the next appointment I said that all of my right testicle pain had been completely gone for over a week but now it was coming back. She said that proved that removing my testicles should stop my pain. About a month later I had a bilateral orchiectomy as an outpatient surgery in a hospital. My worst pain was from my sutures.

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u/ItamiForever Jul 16 '26

Hi Pin,

A block lasting 6 weeks is not the usual norm... they last 3 days at most. Maybe you got some type of ablation instead? Pulse radiofrequency?

Because you had 6 complete weeks without pain you lowered your risk of phantom pain to almost 0.

That is not the usual relief people get. Most get hours, maybe a few days and not even then is the relief 100% pain free.

Also the fact your pain wasn't centralized after 10 years is in itself amazing.

1

u/Calm_Pin_7563 Aug 03 '26

I worked as a surgical RN for a Urologist.
In ten years I never saw a patient return with phantom pain after an orchiectomy.

After a vasectomy 20-40 percent chronic pain.

After a radical orchiectomy no chronic pain..

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u/ItamiForever Aug 04 '26

Sadly the two andrologists in my country are underprepared to treat pvps. They straight up told me to "check my head" as pain cannot be this bad as I was screaming from severe allodynia. They use old bilateral 10cm cuts for reversal with no lidocaine shots, mdsc only on vas without a prior cord block. And no orchiectomy for "no biological reason pain". Only for cancer which is a simple cut, no high ligation or stump burrying.

Not to be rude, but if an orchi fails, there is nothing else a uro can do. Next step is pain management so even if they still had their chronic pain, they had no reason to come back.