Donate

My PVPS story with reversal recovery journal


#1

Hi guys,

Regrettably I have decided to create an account here to begin interacting with some of you in the hopes that I will get some good ideas for treatment as well as have others to talk to about this. Here is some background, apologize for the length. I am in the Columbus OH area FYI.

I had my vasectomy at the end of December of 2016. It was done by Dr. Riemenschneider at Riverside Urology. It was a “no scalpel” vas for whatever that is worth. The procedure seemed to go relatively fine to my knowledge.

My “pain” first started at the beginning of April. I began to notice some tenderness and increased sensitivity on my right testicle/side of that area. On April 10th I went to the first appointment I could get which was at Premiere Urology with Dr. Brown. He (within about 1 minute) diagnosed this as “Epiditimytis” and prescribed me 500 mg of Naproxen twice a day. I also had an ultrasound done which was negative for anything that they were looking for (I assume Cancer?). I took the Naproxen for roughly 3 weeks around which time the issue seemed to go away for the most part, so I started taking the Naproxen less frequently and eventually altogether.

The pain/discomfort came back probably around May 6th again, at which point I started taking the remaining Naproxen again and scheduled an appointment with my PCP (Jacob Wolf) as well as Dr. Brown. My PCP really didn’t seem familiar with PVPS on any level and prescribed me an anti-biotic, despite my suggestion that this was not an infection or related to an STD.

I met with Dr. Brown again at some point in the middle of May. He (again very quickly) decided that if the Naproxen wasn’t working, the next (and only) step he could suggest was that I see a Pain Management specialist, and referred me to Dr. Gladstone McDowell at Integrated Pain Solutions. I am still on the Naproxen by the way.

I met with Dr. McDowell on June 12th. He (again…very quickly) prescribed Gabapentin for me starting with 300mg per night for 2 nights, and then 600mg per night after that. My follow up appointment with him is scheduled for July 3rd. I then have a penciled in time for some kind of nerve block injection for July 7th should the Gabepentin not work.

The Gabapentin seemed to have a positive effect for the first 3-4 days with most pain and discomfort fairly reduced if not totally gone. However the symptoms returned on June 17th and still persist. I spoke with the PA there today and he is suggesting that I up my dosage to 900mg every night and 600mg every morning for a total of 1500mg within 24 hrs. We’ll see how much this helps the situation.

My “pain” is not sharp, however it is typical testicular discomfort. Think of getting hit in the balls, however that feeling never really goes away. The pain/discomfort seems to be centered on my right testicle side, not as much of a groin issue or anything like that. My right testicle is much higher and pulled up close to my groin than the left one. This seems to be a change from before the Vas. Depending on the day it frequently does keep me from doing most things I used to do like running, biking, sex, and activity in general. I have done a few warm baths, do an ice pack from time to time, etc, but those are temporary band-aids. Ultimately I want this issue dealt with. I realize that it has not been extremely long since I started experiencing symptoms, but I don’t want to wait a long time before dealing with them.

In hindsight I should not have had a Vasectomy. I believed that it was an incredibly routine, safe, common, and side-effect free procedure. I now know that PVPS apparently is not that rare and believe that this issue is not widely discussed in the public space (yet).

Dr. Brown did indicate that if my issue is related to Epiditimytis, which I believe would indicate congestion of sperm?, then a reversal may alleviate the backup/inflammation. Obviously things are not that simple, but I do not intend to just accept this pain/discomfort as it is affecting my daily life and very much dominates my thoughts and how I live my life.

Yesterday I spoke on the phone with Dr. Shane Russell. He seemed to think my pain sounds more nerve related and less congestion related, indicating a reversal would not be effective. He also suggested that Neurolysis may be an option and recommended Dr. Shoskes at the Cleveland Clinic.

That’s my story so far. Thanks for reading, I hope that I can update this with positive news in the future.


Reversal saved my life
13 Months, 10 Days Post - Love Your Opinions on Next Steps
#2

@jsh Sorry you are here but thank you for posting your story. It is my hope that any and all persons reading this site will post their story so that there is more information available to those of us who are unfortunate to be in this predicament.

In response to your specific post, I have a few thoughts. Gabapentin has worked well for me, but it takes a few weeks for optimal effect before you can really tell if its going to be effective. It does have its drawbacks but it can at least temper the nerves while your body heals. I have spoken to 2 specialists, one here in Louisville and the PUR clinic. Both seemed to advocate that time heals most men in their opinion. They both offered surgical options but both agreed that they would suggest giving more time before proceeding although that’s incredibly frustrating. Just 4 weeks ago, I wanted my right testicle taken out since the pain was so bad, however, the pain has lessened with the help of some meds, and I am willing to give my body more time to adjust. Some things you could try that were of benefit to me were Pelvic PT, massage therapy and counseling. All have provided some form of relief both physical and mental. Sorry you are here man. Good Luck

Jim


#3

@Kyvas Thanks Jim. I have seen the PUR clinic mentioned a lot - did you reach out to them directly or did you have to schedule something with them? It would be amazing to be able to just talk to someone knowledgeable about this without having to schedule appointments months apart.


#4

Epididymitis, in my opinion, is a fancy word for congestive pain. He wouldn’t be able to diagnose it that quickly without it being relatively obvious. Theoretically speaking, you get a vas, you should expect some bouts of epididymitis. You kind the hose, expect some pressure. Most people’s bodies are able to figure out a way around it. Typically this is by a granuloma, aka pressure release valve. Granulomas are your friend, expect when they hurt like hell.

I (personally) think gabapentin for congestive pain is the stupidest thing I’ve ever heard of. Sperm back up creates pressure, pressure creates pain, nerve senses pain and tells brain, brain recognizes the issue and hurtful. So…they give you gaba to dumb down the nerve response to the brain. Stupid. I think that’s stupid. Do something at the source.

Imagine you’re driving your car and the transmission is acting up. Almost immediately the check engine light comes on. You take it to the shop with your complaint and the tech looks at you and says, “the check engine light is on, how about we cut the wire to the check engine light? That should fix it.”

It doesn’t make sense. Personally I would look at alternatives for congestion and pressure. Papaya seed therapy, testosterone therapy, ornifnyiy prefer surgical, reversal.


#5

@Choohooo Yeah I don’t disagree. I think there may end up being some disagreement about whether this truly is congestive Epiditimytis or not, but for now I’m just going to have to wait and see what the next round of treatments does. I may reach out to the PUR clinic (if they work like that, I’m not in Orlando).


#6

You can typically feel congestive epididymitis. Like I said earlier, for him to be so quick to diagnose, he’s either giving up, guessing, or he can see/feel something. If feel around your testicle, your epididymis should feel like a soft earthworm on the back of your testicle. If this part is sensitive to touch, you’ve got epididymitis. If not, and your testicle just aches, I’d say it’s something else.

Something that isn’t talked about much in urology or on this site is the mouse vasectomy studies. After 6 and 12 months post vasectomy, they were harvesting the testicle and looking at it under microscope. Most testicles showed severe damage “consistent with aging.” Your body turns against the testicles when you get a vas. It’s a slow enough process that most people don’t notice it and it’s not a problem. However, the process is still happening. Your body is still destroying that tissue. I can’t imagine why someone would NOT feel this eventually. The scar tissue, cell damage, something has got to trigger a pain response.


#7

I remember my last visit to scoundrel urologist who performed mine. He didn’t even wanted to check the ultrasound results or examine my ball sack, just checked the sperm analysis and told me I was the first one ever to complain to him about anything related to the surgery. That in 30 years of practice, the typical patient neves gets back after the surgery is done. And that was it.
I always had issues trusting doctors. Now I don’t want to see one even for a mere routine checkup. F*ck them!


#8

Soon as I read your first post, my educated guess was you suffer from congestion.

I know of to many guys that did ok out the gates, but things got worse, and sometimes even worse in months to come. Around 6~ months seem to be a pretty popular time to have an onset of pain for those that did well at first.

I don’t have all the answers for why some of us blow out way faster than others, but I do have some thoughts on that as well.

I feel the best options to help your situation are likely listed above already.

Good luck


#9

@RingoStar Thanks Ringo. Since Dr. Russell seemed to think it wasn’t congestion, what makes you think it is based on what I said? It would seem that if it is congestion, a reversal may be beneficial, no?


#10

The best answer I can give you is, my instincts say so based on your first post. I’ve been at this for over 7 years, I’ve read so many stories, and talked directly with so many men over the years, congestion is where I’d place my bet in this case, at this point in time.

If it was nerve damage, I really think you would’ve had problems closer to the gates, if not straight out of them.

I suppose it’s possible it could be something else here, but I’m not thinking so given what you’ve said up to this point.

Ultrasounds are generally useless far as finding a smoking gun diagnosis of congestive pvps. In fact, they are practically useless far as what I’ve seen, and understand. Just FYI, I have seen ultrasound pick up on some other serious problems.

Congestion is “usually” more synonymous with words and symptoms like, tender, sensitive, inflamed, epididymis, ebbs and flows of pain, spermatocele, sperm granuloma, pain after sex, etc, etc.

Far as the reversal thing goes… Idk, I’ve had two of them, and the last one was done by a master sensai, reversal guru, reversal expert. My first was a failure, my second lasted 24-26 months. I know of guys that had a reversal 5-6-10 years ago that are still open, or at least on one side.

Hard to say what you should do. Given the fact that this type of pain is your only complaint, and what I’ve personally experienced, I’d recommend trying a non invasive therapy such as TRT, or papaya seed powder in an attempt to lower your count enough to where you find balance. You can always re-evaluate your situation at 9-12~ months if that plan doesn’t work.

I feel it’s possible things may resolve, or at least get more manageable in time. I still experience ebbs and flows of pain from congestion, and my second reversal failed 4-5~ years ago.


#11

@RingoStar I appreciate your detailed reply. Was your issue nerve based or congestive? Who did your 2nd reversal? What is TRT?


#12

Sorry to see you here. I may be able to help you from a local perspective as I live in Greater Cleveland and have been treated off and on, mostly off, at the Cleveland Clinic for PVPS since early 2006. I had a reversal there with Dr. Anthony Thomas in mid-2006. Dr. Thomas was one of the first uros in the country to recognize PVPS and treat its victims. Wonderful, wonderful man. Post-reversal, I went pain-free for a couple years, flared up again in late 2008, calmed down in early 2009, and went pain-free 'til April 2016. Seemingly on the mend again with pain down about 70-80% since last April. I believe these flare ups are nerve-related, perhaps degenerative, and the belief right now is that I’m still patent though with a low 10MM sperm count. I’m 52.

I’ve been treated by both Drs. Sabanegh (fertility/reversal specialist who replaced Dr. Thomas) and Dr. Shoskes (only uro in Ohio to perform spermatic cord denervation), the only two at the CC who publish about testicular pain. Thomas, Sabanegh, Shoskes, and Parektatill at the PUR Clinic all know each other and are all terrific guys. I saw Dr. Parekatill at the PUR Clinic in this past April while on a business trip to Orlando. Any one of them will try their best to help with this crappy ailment.

There are some really sharp and well-researched guys on this site. All of the ones who’ve posted above here (Choohoo, Ringo) know their stuff. I’ve learned a lot from them. Might even try papaya seeds based on my exchanges with Ringo, but am sticking with Celebrex and Gabapentin for now. I recently switched back to Gaba after 6 months on Amitryptyline.

The most important thing to TRY to determine (and it’s not easy) is if your pain is congestive or neuropathic. The theory is that if your pain is exclusively neuropathic, an invasive reversal could make matters worse. In 2006, I wasn’t getting must relief from the injections or the gabapentin, so Dr. Thomas concluded I probably had congestive pain and we went for reversal. Turned out I was actively leaking sperm from both vas tips and he concluded the large granulomas were my pain generators. NO REGRETS (even had a post-reversal baby by accident) even though pain has returned twice since then. Nine of the past eleven years have been pain-free other than these two flare-ups.

I had Dr. Parekatill’s famed “mega cord block” in April and definitely got some benefit from it. For that reason, I’m contemplating denervation, but would have a second diagnostic cord block with Dr. Shoskes before that and maybe a third with Dr. P. I’m not at all itching to have the denervation surgery without every bit of confirmation that I’m a good candidate… I’m comfortable with either of them as my denervation surgeon. In fact, I can’t imagine going to anyone other than one of them. But, in my current state, I’m hoping more time will help me avoid the surgery altogether.

I’m giving you a lot of my personal history because I think our situations are similar. My pain started 8 months post-vasectomy, not immediately after the surgery. I had a normal recovery after the vasectomy.

If you head to the Cleveland Clinic, I’d be happy to meet up with you. PM me if you want to exchange contact info.

Scott


#13

I have more of the multifaceted type of PvP/s. I’ve suffered from many things ranging from congestion, sperm leakage/granuloma, nerve damage, and a varicocele at minimum.

Dr. Marks at ICVR did my second reversal

TRT is short for, testosterone replacement therapy.


#14

@jsh I contacted the PUR clinic and set up a phone consult. It was about a 3 - 4 week wait time. Dr B was incredibly nice, easy to talk with and very willing to answer all my questions. I would definitely recommend talking to them to get their opinion.

I agree with @Choohooo, that if your pain is strictly congestive, the Gabapentin is probably not going to do you much good. It sounds like that is your issue. Gaba is definitely more effective on the nerve pain, but if it helps and isn’t causing intolerable side effects, it could help buy you some time to try some of the other therapies or until you decide to get it reversed. I believe its been effective for me because I have both nerve and congestive issues.

I agree about starting Papaya seed as soon as you can. It is a quick, easy start.


#15

Don’t forget that all pain is nerve pain. Whether it’s a directly damaged nerve or a hot poker in your arm, the nerves are transmitting that pain. Gaba helps with everything painful by dumbing down your brains response. However, that dumb down comes at a price.

You are a tricky situation. Part of me says it can’t be nerve damage because it was so delayed. However, many people get ghost pains from neurectomies at 6-12 months so it’s tough to say. You can shut off congestion Spain with enough lidocaine so even blocks aren’t totally diagnostic. Good luck.


#16

The Gaba doesn’t seem to be doing much now after my initial relief last week, however I do feel my pain levels are lower than many of the posters here based on what i’ve read. We’ll see how it does for a few more weeks. 1500mg per day though is making me incredibly drowsy constantly though.

What are the benefits of Papaya seed? How is it used?


#17

If you haven’t figured it out already, there’s currently two threads on papaya seed powder therapy.


#18

sounds like congestive pain to me too. In the end no doctors can really tell you what you have or how to fix it. three options: wait and see with drugs, reversal, denervation. I’d wait a few months then start thinking reversal


#19

Here’s another thing I want to get an opinion about.

I believe that I have read that potentially an enlarged prostate could possibly cause epiditimytis or some of the symptoms. While I have never been examined for this, for many years I have thought to myself that I have some symptoms of an enlarged prostate.

  • A weak or slow urinary stream
  • A feeling of incomplete bladder emptying
  • Difficulty starting urination
  • Frequent urination
  • Getting up frequently at night to urinate
  • A urinary stream that starts and stops
  • Straining to urinate
  • Continued dribbling of urine
  • Returning to urinate again minutes after finishing

Is it possible that some of my problems could be attributed to this? I have also seen where people with the problems I have have seen some relief by taking something like Cialis.


#20

@jsh Hi, all these symtoms you say i got after my vasectomy it plays havoc with prostate. i was 100 percent healthy prior to this. Uro’s deny any conection but a lot of us have this yes its real issue. Some get relief with reversal.