@Ben Thanks for sharing, that makes a lot of sense.
For those who have/had sperm granuloma at the vas site, can you feel a lump behind your testicle?
I was feeling behind my scrotum in the shower tonight and the tender spot on my left side where all the pain comes from is not at the bottom of my testicle. It is pretty high, behind and almost on top of my testicle. I am starting to think that my urologist who did the ultrasound and thought I had a blowout at bottom of my epididymis – may be wrong. My balls were retracted a bit when he was feeling around so probably couldn’t get a good idea.
Perhaps I actually just have a sperm granuloma at the vasectomy site (or sperm dripped down a bit from my open ends). Pain feels a lot like where this picture shows the vas site.
I spoke with Dr. P again recently. My notes in my own words:
- He would not advise just removing the removing granuloma, because it would likely come back. He recommended reversal which would remove the granuloma at same time and get back to a closed system so no future granulomas form
- Best to remove granuloma at same time as reversal, so they don’t have to remove as much vas. Removing the granuloma would require removing a bit of vas with it since it is scared. Having to come back later and do a reversal, they would need to remove even more of the vas due to scaring from the first surgery. So best to do it all at once instead of two separate surgeries. You really have one shot to do it right.
- He does around 600-700 procedures a year, about 1/3 of them (~200) are reversals. Most for pain reasons.
- He offers biowrap with reversal for an additional $1000, but based on the results it probably doesn’t provide additional benefit.
- He offered to do reversal or just one side (my left), since my right side is not bothering me.
- He discouraged testoserone therapy but could do it if I really wanted to. He seemed a bit more open on this than last time.
- No harm to me waiting.
I spoke with Dr. Daniels a few months ago, forgot to put my notes in here before now:
My notes (in my own words):
- He didn’t give me an exact number of how many reversals he has done over the years, but he said it was a lot. About 100 of those reversals over the years were for pain, and about 100 for religious reasons.
- He said of the reversals he has done for pain, almost everyone gets better. Although he is not sure exact reasons why. He said the reversal study he saw that calimed good results for pain was inherently flawed because the patients were from Canada. He said in Canada if they say a reversal was for pain reasons, it is free, but not free for fertility reasons.
- For pain patients he’d try to remove a granuloma but not for fertility patients
- They use drugs to put you to sleep during the procedure, not general anethesia
- He said he checks for sperm from vas if he can get enough fluid out
- He makes an inch incision on either testicle to get his fingers in there, better than using tools to access the vas.
- Initially he misunderstood that I had pain for 2 years, and he said that sounded like i had scaring at vasectomy site from the cauterization, sevearl inches of unusable vas from leaking, bypass likely needed, and blowout for vas cut too low (yikes), but then he realized that I only had pain for a couple months. He suggested I wait and my probablem may not be due to vasectomy. He said anti-depressent drugs help with pain, but not sure exactly why.
Carolina Vasectomy Reversal
I spoke briefly with Dr. Green a month or so ago, because a friend had a great experience with him for reversal for fertility. He seemed very nice on the phone and got back to me right away.
Here are my notes in my own words:
- He has done reversals for pain, and they are successful. It sounded like he has done most reversals for fertility though, and for pain only a couple a month.
- He would use anesthesia, I’d be under for about 3 hours
- He uses a microscope and multi-layer reconnection
- He provides pictures of each step
- He does incisions on either side and inserts a drain that he would remove the next day at the hotel visit
- He uses internal stitches which dissolve
- Recovery woudl be about 1 week off work and 6 weeks before sex.
- He would remove granuloma if he can, but it is hard if it is vascularized and close to testicular artery. So in that case he wouldn’t want to disturb it.
- He does not place much faith in ultrasounds, hard to say exactly what is going on until surgery. He has seen a vas double back on it’s own and it looks like epididymitis but it is not.
- Rare to have a blowout with open-ended vasectomy. Although it is true vas can close on its own.
- Possible to have to remove some of epi due to granuloma/blowout, but that is rare
Sounds like a bunch of solid feedback @worship01. I appreciate reading posts like these.
Thanks for the positive feedback @RingoStar. I will continue putting my notes on here in case it is helpful to someone else.
It’s been a couple months and wanted to post an update.
I have now been on papaya seed for 7 months (~1 tsp a day). I also regularly take Curamin Extra Strength (3x a day), Wobenzyme N (6 a day), and started some Serrapeptase (2x a day)
Overall, haven’t noticed much improvement. Sometimes I think I am doing better and feel pretty good for a few days, but then I think maybe I am just getting used to things.
I usually wake up in morning feeling pretty good or almost pain free. But it gets worse as day goes on, and after sex. The last several days I’ve been hobbling around the house as feels like a cramp in my left leg which is side of testicle. Feeling pretty down. Soreness and stiffness in my inner thigh / hamstring and down back of my left leg (maybe GF nerve??). I had a chiropractic adjustment yesterday (my third visit in 3 weeks) which may have caused it to flare up, but that feeling of pulling in my left leg has been pretty consistent throughout this PVPS.
A few observations:
- I went RV camping for a week about a month ago and noticed pretty good improvement in symptoms. I don’t know whether it was the relaxation that helped, or change in my usual bed. The RV bed has a nice memory foam topper, and at home I have a Purple mattress. It is interesting my PVPS symptoms started a couple months after I got the Purple mattress, but could be coincidence.
- Hot baths feel good in the moment, but afterwards I seem to hurt more. Ice/cold seems to help best, so I think I am mostly dealing with inflammation.
- I had a cold recently and during the fever / aches I didn’t notice the testicular pain really. Could be because my body is fighting off virus/bug and not worrying about granuloma.
- Pain seems to originate from front of left testicle, in middle. I think that is head of epi, or could be vasectomy site. From reading posts by @raising4girls, perhaps my GF nerve is causing the issues down my leg. That leg pain bugs me more than the testicular pain actually.
I’m not really sure next step.
Thought I’d weigh in on all of this. I can relate to all of this. Like you, I wake up pain-free or nearly pain-free most days. I think it’s very possible all these symptoms are inter-related. Maybe not directly, but indirectly. Another forum member is a chiropractor and has opined many times about how damage to the GF and/or II/IH impacts pelvic stability and sets off a whole posture chain reaction that affects the whole body. I 100% buy into his theories because it explains all of my other seemingly unrelated symptoms (like premature wear of facet joints due to pelvic instability and core weakness that “coincidentally” started 4 months post-vas and resulted in L5/S1 fusion 7-1/2 years post-vas). The left leg pain COULD be the GF nerve itself, but it could also be something else due to structural changes changes in your posture.
I had to laugh because one of my best weeks of 2018 was when we were camping in August. I think I was getting benefit from Dr. P.'s cord block in late June.
Like you, I’ve noticed that hot baths help in very short run but seem to ramp up pain afterward, especially the next day. I agree that the heat seems to cause inflammation.
It’s really tough to get a proper diagnosis. I think a lot of doctors specialize too much. That’s helpful once you’ve got the diagnosis and need one to fix a really unique problem, but it’s hard to find one to look at us holistically. It’s one thing I like about Dr. P. but even he can be pretty dogmatic in following his defined protocols.
Thanks for the comments @raising4girls, I really appreciate you taking the time. I think the solution to all our problems is definitely to go camping more!
As an update I got a massage this week, first time since this PVPS started. Man, I was tight but I’m glad I did it. Spots in my left hip area and glutes were tight like guitar strings, and there was muscle in my left hamstring area that was like a tightrope… she was like what is going on here (!) as she tried to loosen it.
A couple days after the massage I went back to the chiropractor since I had been hobbling around since before Thanksgiving and my left hip area just didn’t feel right and I was having to ice it constantly… I just couldn’t walk straight. He did the adjustment where I lay on my side and keep my lower leg straight while he adjusts my lower back. I felt a pop in my lower left hip area and immediately I could walk a lot better, and the discomfort lessened in my testicle area. So things are definitely related and interconnected.
In my case I think testicle pain caused me to favor that left side and walk a bit off, and probably irritated some nerves as well. The leg discomfort started about a week or so after my testicle pain started in April, so I’m convinced it is all related and if I correct the issue in testicle the other areas will resolve (including tingling in prostate area). Chiropractor has helped structurally but he agreed there is probably some inflammatory process still going on down there in my testicle.
I’m thinking of asking Dr P. for short course of prednisone to see if that helps kill the inflammation and maybe my body can start to repair. TRT is another option but since I have been on papaya seed so long Id have thought it wild have helped more if sperm production was key issue. Also concerned about messing with my hormones and creating more issues.
Hi @worship01 - currently I have similar symptoms as you, but on the right side. I had open ended vas about 2.5 years ago. For about 1.5 years I had many pains 4-6 out of 10 in genital area (dull and burning), perineum, pelvic floor, both legs. Things have calmed down a bit and recently I noticed similar (actually seems same) bulge (with some pain) at the bottom of right epi as in your doctor’s drawing above, and pain/cramping in my right leg (back of thigh, calf, foot, and sometimes lower back). Leg pain gets worse with sitting and gets better with exercising, walking, stretching, which seem important to do with our condition. Sometimes I think that leg pain is related to lower back issues. My epi bulge feels quite hard, like a knot. Do granulomas feel this hard? Seems that we have two choices - wait and see (possibly with some medication) as your Dr noted or to do a reversal that takes care also of granuloma as reversal Drs noted - thank much for your notes btw. I have been just accepting my new painful me for the past 2.5 years. But now I have actually evidence that something is wrong, this bulge, and that reversal may help. Part of me thinks that I should live with current pain level (2-4 out of 10) and see if it subsidies over the years. Prednisone for inflammation and suppressing immune system seems interesting.
Excellent notes and observations worship01.Interesting how Urologists numbers,recommendations,etc. are all different.
Hi @Vincent, thanks for the reply. I think others have described granulomas as hard, but to be honest I’ve never actually felt one on me. Maybe because I haven’t pressed hard enough or don’t know where exactly it is. I don’t see any funny looking bulge just looking at my scrotum, but something definitely still is causing discomfort in my left testicle that seems to radiate down by inner thigh and leg.
Did you get an ultrasound at some point? Urologist seemed to locate granuloma on the ultrasound back in May, but I’ve since learned from the reversal surgeons they don’t put much faith at all in the ultrasounds as to what they see at the time of surgery. So it seems interpreting the ultrasound is difficult not an exact science. In fact, the ultrasound tech who does them all the time first told me back in May after she examined me that everything looked normal. But then the Doctor came right back in and after a couple minutes found the supposed granuloma. As to how he determined the exact location of it, I am not sure since my balls were retracted to small size at that point due to the cold jelly they put on your balls, and the cold ultrasound instrument, and the cold exam table in the cold room… So things were all bunched together at that point. I am thinking about going to a different urologist and having another ultrasound, to get a second opinion and to see what he thinks about the granuloma.
One thing that has helped over the past week or so is to lay on a warming pad at night for about an hour before I go to bed. I borrowed a Bio Mat (https://www.biomat.com/) from my sister, but probably any heating pad would work. Not too hot, it was just a nice warm penetrating heat. That seems to relax my leg and perineum and back muscles alot, and I haven’t noticed it causing any extra inflammation in my testicle like I noticed taking hot baths. (And I can never stay in a hot bath that long anyways, I always have to get out after about 15 mins.)
Thanks @Mainman. Yes, everyone seems to have a slightly different opinion. They all have different perspectives, different experiences, different skill levels possibly.
As an engineer I like to think in black and white terms. Just diagnose the exact problem and here is what it will take to fix it. But in these matters it is a bit different, so I think is worthwhile to talk to as many experts as possible, and try to identify if there are common truths between them.