After 1 year and 9 months of living with this shit I finally got a reversal. I went with Dr P at the PUR clinic. I decided this was my best chance to reclaim my life. A flare up I had about 2 weeks prior to surgery erased any doubt that I needed to do something. Three weeks into recovery and ouch! I still believe it was the right decision, but what a price to pay. Mentally the worst part now is dealing with a case of Schrodinger’s balls, where my nuts are simultaneously in a state of being fixed, the same, or worse but I can’t know yet.
In the hopes it might help someone new to this make their own way, here’s my reasoning. After learning more than I care to know about PVPS, it seemed that you could divide the source of pain into 3 buckets. Now I know this division is debatable and a bit arbitrary. I grouped based on my understanding of treatment options and what little diagnostics were available to me. The list isn’t meant to be exhaustive either. A problem for me was that you can have “secondary” pain that feels like any of the others but has a different source.
- closed vas deferens causes pressure build up or irritation
- diagnostics: inspection, papaya seed, testosterone?
- treatments: waiting, anti-inflammatory Rx’s or OTC medicine/supplements, papaya seed, reversal, epididymectomy, open ended vasectomy, orchiectomy
- damaged or irritated nerves causing pain
- diagnostics: nerve blocks, neuromodulating Rx’s or OTC medicine/supplements, physical therapy (to an extent)
- treatments: waiting, nerve block, neuromodulating Rx’s or OTC meds, physical therapy, nerve ablation, denervation
- Other - autoimmune, inflammation, etc
- pain caused by something else
- diagnostics: ultrasound for physiological issue, trying various medicines, etc
- treatments: in many cases there’s not much good data on diagnosing or treating.
I spent about a year thinking my pain was neuropathic. The pain onset was about 1 week post vasectomy, mild, and localized to my scrotum/testes. By 4 weeks post, it had spread to my upper thighs, lower abdomen, and back. This pain was much worse than anything in my testicles and in effect masked that pain. I also had bilateral granulomas on the end of each vas that were very painful. Pelvic floor PT, stretching, massage, gabapentin, neuropathy supplements all helped. The granulomas dissipated on their own.
About 9-12 months after onset I thought I was turning the page on this. I had a very good summer even though being too active would often set off mild flare ups. However I noticed that thru treatment that the pain would always recede back to my testicles and epididymis but never quite go away there. Those areas would always remain tender and somewhat inflammed. Squeezing them I would feel the nerves set off unpleasant sensations in the areas where pain would typically spread too. Even when I was mostly pain free I had issues with these muscles cramping and low back pain. During the first year I was taking a throw-everything-at-it approach including papaya seed powder.
At the end of the summer I had a bad flare up that felt more like congestion. The pain was very concentrated in my right epi and lower vas. I had stopped taking most meds including papaya seed to see how it went. I took up papaya seed again along with everything else and this flare up went down in a few weeks.
Through the fall things slowly deteriorated. This time the congestive pain would clearly precede the neuropathic pain. The neuopathic treatments seemed to be less effective and congestive treatments more so, all non invasive still. I started having sharp pain sometimes when ejaculating. My core strength was getting worse. I was even having unexplained tinnitus at times. So I twice experimented with papaya seed powder. Both times pain and swelling slowly returned/receded when I stopped/started taking it. Took about 2 weeks off and 4 weeks on to see a clear pattern of pain going up or down.
I also started seeing a 2nd pelvic floor PT with the intent of trying to figure out which nerves might be damaged. Now a PT can’t really give you this diagnosis, only nerve blocks or denervation can pin point a nerve. However she felt the patterns of pain were not really consistent with a particular nerve being damaged. It was more like an ongoing response to trauma or injury where all the muscles get tight and many nerves get triggered. Also the chance that nerves were injured on both sides just seems low. Though the PT also warned me damaged nerves can manifest in all sorts of pain and symptoms.
So at that point I was mostly convinced I had congestive issues. Referred pain can feel like swelling because it makes the area more sensitive. So to put it to rest, I measured my nuts with a calipers when they felt inflamed or normal. I saw a worst case ~15% change in diameter, that a ~50% increase in volume! Now I felt all the neuropathic pain was a result of 24/7 irritation, inflammation, and pain in my testes and epis.
I never tried any nerve blocks. I had one scheduled, but its always weeks to see a urologist, so I was in almost no pain the week of and I cancelled because I didn’t see the point. After reading more experiences with them they seemed too unreliable as a diagnostic tool and a small risk for causing more pain. By the point I was desperate enough to try a block again, I was already convinced the issue was congestion.
Now I needed decide on treatments. Papaya seed powder made life livable, but I could not be active without risking a flare up. There didn’t seem to be any other non-surgical options. Since a reversal doesn’t preclude any other surgical options it seems like the clear choice. Furthermore an epididymectomy just seems like a stepping stone towards an orchiectomy. Converting to an open ended vasectomy seemed like a bad idea given the sperm granulomas I had previously.
But don’t reversals eventually close up? My thoughts exactly, but the data seems to show its still often effective at stopping pain. Dr P at PUR said the same. And even if only buys me a few years its worth it. See below for a meta-study of reversal success rates for pain. (this used to be on the forum but link is broken).
I traveled by air to Florida to have it done at the PUR clinic. Well actually at an OR in the hospital immediately adjacent. The staff were kind and very good about explaining everything along the way until they knocked me out cold. The good news is they found sperm on both sides so it would appear no blockages had formed. The bad news is that it is definitely a much more painful and slow (acute) recovery compared to the vasectomy. I knew this, but it still didn’t prepare me to see my junk all black, blue, and swollen.
There’s not much else to add regarding the procedure that hasn’t already been said on this site. Here’s a few tips and what I’d do differently:
- Bring sleeping medicine. I did not get much sleep the night before because I was nervous and my mind wouldn’t stop running. It would also helps afterwards.
- Order groceries to your hotel room before you arrive. I did this and it was great.
- Bring a variety of ice packs and under wear. Your scrotum is going to swell and its hard to know whats going to work best.
- Bring laxatives. Constipation is common after anesthesia. I was extremely uncomfortable due to this afterwards. Consider using some the days before to be “empty” before surgery.
- Take 3 weeks off. I started with 2 weeks and had to extend my leave. If you have a physical job you should probably take 4 weeks. I am barely able to work 8 hrs from home at a sit/stand desk at the 3 week mark.
- Definitely use a wheel chair in the airport. It will get you priority boarding so you can get seats with extra legroom.
- Be prepared for it to get worse before it gets better.
Pain peaked about 4 days post surgery. Week 1 I was mostly bed ridden in a stupor of marijuana and pain pills. Week 2 saw big improvements. Now I am 3 weeks out and things are trending better slowly. Most bruising has disappeared. The right side feels pretty good. Left side is still swelling up and quite painful at times. It was the more problematic side to begin with. So I am still icing a few times a day and it knocks the swelling down quickly. The incision is not painful at all. The pain always gets worse through the day and peaks in the evening.
I have a triangular hard lump a little bigger than a quarter in diameter that runs from the incision and across the top of the left testicle. Dr P was confident it is a hematoma that should clear on its own. I think this is pushing on my left testical and causing me most of the pain.
I am hopeful I will see a full recovery. The characteristic of the pain I’m having isn’t really like what I had prior. Its diffuse throughout my scrotum and inguinal area except for the hematoma lump. I don’t feel any sharp pain from my vas or epis. For all the sitting and laying around without any stretching or activity, I was sure I would cramp up badly. I was constantly battling that before. While I am having some tightness, especially in my psoas, its not bad.
First ejaculation at the 2 week mark was good with no acute pain. I think it stirred things up cause swelling was up that evening. I definitely had sensations in areas where there was none before and a distinct feeling of “release” that is hard to describe. Worth noting, I am on Flomax at the moment because I was having trouble urinating right after surgery. I plan on stopping this soon and this should only make things better.
I am taking: Flomax, Celebrex, gabapentin, Canabrex (at Dr P’s recommendation), a multi-vitamin high in B vitamins, ALA supplement, turmeric supplements, fish oil, garlic immune supplement, and magnesium supplements. It makes me cringe to list that all out. God only knows if any of it is helping. I plan to peel off the Flomax today. Then stop the gabapentin when the swelling is gone. The rest I’ll continue for a while to help with inflammation and nerve regrowth.
I’ll post a few updates along the way and hopefully declare this a success sometime later.