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My story so far - a few things seem to be helping


#1

Hi friends. I’ve been reading on here for maybe 2 months now. I was so thankful to find this forum. Previously all google searches brought me to seemingly hopeless sites. I’ve appreciated the supportive nature of this community and the comraderie I’ve felt as I read your stories and see you help each other. It has helped me greatly on an emotional level, and now I believe it is starting to help on a physical level as well. Fingers crossed. Quick summary of my story so far:

  • No scalpel, open vas on 7/11/18 in Akron, OH. I’d say the name of the doctor, but I notice people on here don’t seem to do that.

  • Normal level of bruising and tenderness for about 2 weeks. The bruising went away, but the tenderness remained. Nothing excruciating, but always there. And definitely extra pain when manipulating the testicles in any way and when not wearing any kind of support.

  • As I started walking more frequently I noticed that the compression shorts I had been wearing for support weren’t enough and walking was still generally uncomfortable.

  • Bought a jock strap and wore it over the compression shorts for extra support while walking.

  • I scheduled a follow-up appt. with a nurse practitioner about a month post-op. She prescribed Bactrim and high dose of ibuprofen. This had no impact and by about day 7 or 8 I had an allergic reaction to the antibiotics and broke out in hives. Also felt increased level of existing emotional despair. Lot’s of weeping - it was weird. She said this was a symptom of the the allergic reaction. She prescribed a different antibiotic and ordered an ultrasound which revealed slightly inflamed epididymus and small hydroceles which she said were normal and shouldn’t be causing discomfort. All indication was that this pain should go away soon.

  • 2 months post-op not getting any better, so I saw the doctor who performed the procedure. Upon manual examination he was 100% certain that my pain is coming from the epididymus - primarily on the left side but also slightly on the right. He said that this may never go away. He gave it a 50% chance that it would go away on its own, and the only solution was to take off both epididymus in a risky procedure that may end up with me losing both testicles. The surgery could also cause new pain and not actually work. He said there is nothing in between to try. This was the only next step (other than living with the pain). He then asked me if I wanted to schedule the surgery in 2 weeks! Of course I said no and left the office feeling greatly discouraged.

  • I consider myself a very active guy - 42, marathon runner, cyclist, backpacker with 3 small kids who play a variety of sports. This has felt devastating on so many levels. I can’t do any of the things I had been doing just 4 months ago. My plan was to just wait it out for a few more months then possibly get a second opinion and likely go through with the surgery. So glad I didn’t!

  • I found this site and began trying a wide variety of things to see if I can get some relief.

  • Started papaya seed powder 1/2 tsp 2X daily about a month ago

  • Turmeric Pills

  • Aleve instead of ibuprofen

  • Plexus (I’ve never heard anyone one here taking this, but my wife wanted me to try it). They have a product called “Nerve” which has Alpha Lipoic acid for neuropathic pain. I also take some of the other pills (probiotic and some sort of cleanse) as well as the Slim drink.

  • Fish Oil pills

  • Lots of icing (I use a trash can liner and fill with crushed ice from my freezer)

  • Warm baths - this might make things worse - definitely not helpful for me

  • Lots of different support options. My son wanted to play paintball for his birthday so I bought a cup to go in the jock strap. This actually provided some relief so I started wearing it regularly for a week or so after. But it had no long-term benefits so eventually I stopped. I tried UFM underwear that someone recommended on here & didn’t like it. Tried the David Archy trunks (also recommended on here) and like these a lot - I wear an X-Large jock strap over top of the David Archy trunks every day (I’m more of a small-medium guy so the the X-Large strap provides the support without smashing things).

  • About 2 weeks ago I started walking 1 mile at a time - 2 or 3 times a day. This was primarily started because I’ve been feeling depressed and just needing to move and get outside. But I think the walks are actually helping physically too.

I started tracking my days in early October and am noticing definite improvement - especially over the last 2 weeks. I continue to walk everyday. Post-sex “congestion” doesn’t seem to be as severe. At 4 months I have some hope. Definitely not ready to run or bike, but thankful I can walk. The “good days” seem to be more frequent and the “bad days” seem to be less severe. I don’t know which combination of the above items is helping the most, but I’m just thankful to be heading in the right direction for now.

My heart goes out to some of you men who have it way worse than I do. Thanks for taking the time to post your stories and to help others in the midst of your crisis. I’ll keep updating as I can.


#2

Thanks for sharing!!


#3

Very similar story to me, both in terms of the timeline (my vas was done 6/25/18) and symptoms. Done 3 courses of antibiotics already, last one didn’t do anything. Mostly the issue is my left epididymis that is inflamed. Seeing the urologist on Monday and am going to ask for prednisone, as it appears to be mostly an inflamation issue for me and some others on this board have had some help with prednisone I believe.

Glad to hear you are getting better, I don’t really know if I am, definitely better than 3 weeks post op, but I don’t know if I’ve seen much improvement over the past 3 months or so myself. Guess I might be flying down to Orlando sometime in the next few months to see one of the PUR clinic guys. There are still options out there as I’m sure you know. I find it crazy that your Uro just told you to live with it. Just look around this site and you will see many things both conservative and surgical people on here have tried, with varying levels of success.

Would give almost anything to not have had this vasectomy done, but on the positive side, it’s made me appreciate the support network I have around me. Just wish I could enjoy this time with my 7 month old twins, instead of constantly thinking about the discomfort I have every day. Worst decision of my life.


#4

same here. worst thing i have ever done. the regret is crippling at times.


#5

If icing helps I recommend Igloo Maxcold Reusable-Ice-Sheets. They can be cut to the appropriate size. I had a reversal 19 months ago and am doing much better, but still resort to icing a few times most days. These are convenient and its easy to bring a cooler full of these things wherever you go.


#6

DG469 - sorry to see your story. Sounds a lot like mine from 2005.

It’s a total shame that urologists are allowed to practice and perform vasectomies without knowing the proper and well-defined protocols for post-vasectomy pain. Removing the epi’s is by no means your only surgical option. He should know that.

You’re fortunate in that the Cleveland Clinic is in our/your backyard. One of the original pioneers in treating men with PVPS was Dr. Anthony Thomas. He passed away last year. I was one of his last reversal (vasovasostomy) surgeries in 2006, and I lived pain-free for nearly 10 years post-reversal except for a 6-month relapse 2008-09. My pain-free recovery ended in 2016 after, you guessed it, my first bike ride of the season.

Dr. Thomas’ replacement in 2006 was Dr. Sabanegh but he was recently promoted to President of the entire main campus. Terrific guy but I doubt he’s performing reversals any longer. I believe there’s a new “fertility” specialist replacing him.

Another alternative, controversial on this forum, is spermatic cord denervation (SCD). Dr. Daniel Shoskes at the CC is the only urologist in Ohio performing SCD. I’ve seen him several times and am going back once more for another diagnostic test (cord block) in December that may lead me to surgery with him.

I wouldn’t suggest rushing into either surgery, but I, and I’d say the majority on this forum, believe reversal and SCD are better surgical options than epi removal. Your urologist is irresponsibly ignorant. I would argue that removing the entire cord and testicle is a better option than epi removal, but that’s my opinion, not medical fact. No doctor has ever been able to explain to me what happens to the sperm that the testicle keeps producing once the epi is removed.

You can also try pain management injections to the GF and II/IH nerves. This will help you diagnose if the pain is more neuropathic in nature. I recently had block of the GF and my left-side scrotal pain disappeared indicating, presumably, that I may be dealing with a damaged GF nerve.

Lastly, I’m seeing a 2nd peripheral nerve surgeon in 2 weeks at the Cleveland Clinic, as well, to evaluate the option of severing the GF nerve in the groin. That differs from SCD which attempts to sever the branches of the GF down lower in the scrotum.

My point is not to hijack your thread but to let you know there are surgical options out there, not necessarily now, and available in your backyard. I’m just so frustrated with urologists who can’t do a simple Google search to find this protocol chart.

Again, I always suggest trying the non-surgical options first. I’ve been working with Pain Management approaches for 2-1/2 years since this bout started. Only now am I contemplating surgeries. In my first bout 2005-06, the pain was MUCH worse, and I had the reversal 8 months following pain onset after also attempting pain management approaches like you’re doing.


#7

Thanks so much for your replies, guys. @Karl_Hungus I will be very curious to hear if you are able to try prednisone and how it goes. Yeah, I was pretty discouraged and angry at my original urologist after that appointment. In retrospect I wonder if he was just trying to get rid of me - suggesting a ridiculous procedure after only 2 months post-vasectomy. And I believe he’s the head of urology at Summa Health in the Akron area. I went to him in the first place thinking he must know what he’s doing. Hope you get some relief soon so you can enjoy those little kids. I can totally relate to the frustration with that. My kids are so active and want me to play with them. It breaks my heart to have to say no. And it’s hard to explain to them.

@crotalus97 I’ve heard a few guys recommend those ice-sheets on here. Might be about time for me to give those a try. My wife is tired of me using all of our ice from the freezer. Quick question - do you go right against the skin with these? Any specific tips or tricks would be much appreciated.

@raising4girls Thanks so much for chiming in here. I’ve been catching up on your story since I joined this forum a month or so ago. I’m particularly interested since we’re in the same part of Ohio. So sorry to read about all that you’ve been through. I tried to call Dr. Sabanegh’s office last week and never received a call back. Sounds like you think he’s not scheduling any appointments with new patients any longer? Happen to know if there are any other “reversal” guys there that might be recommended for pvps?

As you suggest, I’m not looking to jump into any surgical options yet. I’m at 4 months post-vas and am planning to wait at least a year - trying conservative options as necessary. Right now I can work and socialize fine (assuming I’m not sitting down too long), but cannot do any of the active things I enjoy to keep me healthy (physically and mentally). And sex is definitely not back to normal. It’s constantly on my mind and distracting me, but I’m not in excruciating pain.

Apart from the conservative options I’m currently trying I’d like to get in with a different urologist in the Cleveland/Akron area (the only one I’ve seen so far is the one who did my vasectomy). But I would want to make sure it is someone who is recommended and who treats pvps. Maybe another ultrasound to see if anything has developed? Maybe another course of antibiotics? I tried Bactrim and had an allergic reaction then a course of doxy that did nothing (around 2 months post-vas). Just seems wise to have a go-to doctor - even if I’m not looking to do any surgery right now.


#8

Sorry to hear you couldn’t see Dr. Sabanegh. I saw him in 2008-09 and he treated me very well. In the end, that short bout of pain went away with celebrex and gabapentin, and a 2nd reversal was something I wanted to avoid anyway. I went another 7 glorious years with no pain but would not have hesitated to work with him if needed. I can see why he was promoted to CEO of the main campus. Check out his resume if you’re curious. I believe a lady has replaced him. Don’t know anything about her but, frankly, if I was contemplating reversal, I’d travel the world looking for one of the best. Dr. Thomas who did mine was one of the best. Right now, Drs. Marks and Burrows seem like go-to sources for reversals. Others can chime in with personal experience.

Dr. Shoskes is a good start. Average bed-side manner, nice man, but he gives brief answers, so you have to prepare your questions with follow ups. He will likely prescribe you gabapentin and amitriptyline for starters. He also had me as a clinical trial for electro-shockwave-therapy on my spermatic cord. Didn’t help. Then he gave me the option of referral to Pain Mgt. (which I chose) or performing an in-office cord block. His posit is that if the cord block relieves the pain, he will perform SCD. To my knowledge, those are really his only options.

I don’t know of anyone in Ohio offering both SCD and reversal, so it’s hard to get a completely holistic look. I’ve seen Dr. Parekatill in Orlando FL three times since 2016. He and his partner Dr. Brahmbatt at the PUR Clinic seem to be the only ones offering all of the PVPS pain management and surgical options, a one-stop shop if you will. Some here have had good luck with the PUR Clinic, some have not. Dr. P. did his fertility fellowship under Dr. Thomas at the CC, so I have a soft spot for him.

To my knowledge, there’s no one else actively treating PVPS victims in Northern Ohio. I think if you go down the reversal path, you’re pretty much going to have to deal with someone who’s main practice is restoring fertility.

I have pretty much decided on attempting nerve surgery, either SCD with Dr. Shoskes or GF re-section with Dr. Krpata. Not sure which. If it doesn’t work, then inguinal orchiectomy on one side. Just not willing to try re-do reversal as I fear worsening the nerve pain. In your case, if you head down the surgical path, I’d give reversal serious consideration with someone who does a “clean up” of scar tissue in the process. Again, just my $0.02.


#9

I had something very similar and biked today for the first time since my vas operation 4/18/18.

I found that stretching my left psoas (or your side of interest if there is one) made a huge difference, as did lying on my back and holding my knees up and relaxing my pelvic muscles. I had similar inflammation and pain, limiting walks, and certainly no bike riding. It took six months and I am not 100%, but pretty damn close. 2-4 weeks ago I was only 70%, prior to stretches.


#10

Wow, that’s very encouraging! Glad to hear you are almost back to 100%. I must admit that I had to look up the “psoas” muscle. I’ll definitely give this a try. Happen to have a link for a stretch that has worked for you (maybe youtube video?). Thanks for responding.


#11

Look at #1, which refers to what helps me. This really relaxes the pelvic floor. #4 also helps, but push up into up-dog, and then look over your shoulder to the side of the groin that hurts… towards your foot. This helps stretch the psoas on the front side. You should feel it in a good way.

Do these as much as you can without overdoing it. Let me know how it goes and if I can explain anything in more detail! You’ll get there! I also have young kids and felt like life was about over for me a few months ago. Am also very active so I know how you feel. Don’t get stressed and stay calm. You will be fine.

Another thing that has helped me is using a cushion with a hole in it, while sitting. Lastly, I’d recommend seeing a pelvic floor specialist. You want to relax your muscles, not strengthen. Keep your body loose and your mind at ease, and day by day you will see improvements.


#12

Hey,

Your story sounds very similar to mine. After 2 years of constant pain, I’ve been pain free 8+ months.

I was convinced I had nerve or chronic (non-bacterial) epididymis. Tons of testing different theories to rule one or other out.

Thankfully, I met a pelvic floor physical therapist - who immediately knew my issue. To say I doubted this (after months of trying literally EVERYTHING), she educated me on impact of pelvic floor muscular pain, and walked Me through what it would take.

I can detail much more, and a few folks on this site have been seeing same results and been sharing some great info as well.

You wouldn’t think it, but chronically tight abs can cause testicular pain that feels all the world to be in your epididymis.

I, too was, (and am again…thank god) a runner & cyclist (and swimmer).

My path back was very light stretching, very light activity, and weekly PT sessions (she had to dry needle me in some tough spots - and direct my stretching routine & re-activation techniques).

In short, take a look into Pelvic Floor PT. Ask them if they’re aware of PVPS, and find one in your area that can help.

Good luck, hang in there, & let me know if I can answer any questions.


#13

Forgot this if you’re interested: Go see a pelvic floor physical therapist!


#14

Thanks so much @PVPSux and @keebler456. Pelvic floor exercises was on my list of things to try that I haven’t gotten to yet. You just bumped this way up for me. Think I’ll try the exercises in your link first then maybe see someone in the Cleveland area if necessary. I read in one of the threads someone recommending a PT at the Cleveland Clinic. Did they have to do any “internal pelvic assessments” for you? I’m looking for least invasive options at the moment. I’m tired of being poked and prodded for now. Thanks again. So glad you guys are doing well. Brings me hope.


#15

Best of luck and let us know how it goes. I had some inner rectum work by the pelvic floor specialist, but I am not sure it did much. She said it all seemed pretty normal. @Uncomfortable is a great resource in this as well, and he got me motivated originally to seek out stretches.


#16

I just posted this as a new topic. But this bike seat is amazing and I have biked to and from work this week (12 miles each day) with little discomfort, if any.