Post Vasectomy Pain Forum

8-month post denervation update

Hi all, I had traditional denervation on the left side at Stanford back in Nov 2013. I posted many times on the old Yahoo board if some of you remember me. I had this after suffering awful pain at the incision site on my spermatic cord for 8 months post-vasectomy.

34/M, married, two toddler boys, employed

As hard mentally as it is for me to start talking about this again, I wanted to give you an update for those who were curious.

The first few months after denervation were very difficult. While my old cord pain is 100% gone, I’m left with a new set of pains and frustrations.

After swelling and everything “settled down” post surgery, my left testicle remained larger than it had been previously. It was partially from fluid, although now the size and slight heaviness is clearly due to my epididymus being enlarged. Just at the head of the cord where it meets the testicle is where I have pain/sensitivity when it comes. I did not have any actual testicle pain to speak of prior to denervation.

If a slight sensitivity to touch was all I felt, I’d probably be ok with that.

My other issues started a few months ago. It feels like back pain and lower left flank pain. When my testicle causes pain, it’s always at the same time that a very specific spot in my back hurts.

I’ve had off and on minor back pain from time to time over the years, but the duration and severity of this episode make me wonder.

Also, shortly after my initial vasectomy, I began seeing a gastroenterologist for lower-left pain and some other gastro symptoms.

Due to one or more factors, I basically have pain and discomfort in a giant swath beginning (occasionally)at the end of my left testicle, disappearing then resuming at the denervation incision site, disappearing again for another 5-6 inches, pain in my left lower quadrant, through to my back, then up to my spine in my mid-back. My actual incision site, despite having persistent painful numb sensations on the skin from the incision site south has become more and more sore. Sometimes I can touch my testicle to induce pain and I will feel it in my back.

I really feel like my body has experienced some sort of awful domino effect. I honestly don’t know what doctor to talk to or what issue is the main one causing me ongoing pain.

This is difficult for me. Despite having a few minor health issues from time to time, I have been overwhelmingly healthy. This has been a drastic change in my life for the worse. I’m not usually “that guy” complaining about this and that all the time. Now, each day I have something causing me chronic pain in this area.

Here’s a quick summary of facts:

Vasectomy 3/2013
Denervation 11/2013

Improvements:
Pain at vasectomy site in cord 100% gone
Occasionally have good days/weeks where I feel almost normal

Current issues:
Swollen testicle/epididymus (also hanging lower from weight & surgery)
Sensitive testicle near epididymal head where I had no issue before (pain can radiate to back)
Sore denervation incision site
Lower left and left flank pain (I have diverticulosis, but never a confirmed tested case of diverticulitis)
Pain through abdomen to back and into middle-back spine
Back hurts almost constantly the last few weeks/month
I’ve had several back-to-back bouts of prostatitis and urinary frequency over the last month+

My urologist and Chiropractor both had me get a lumbar MRI. That showed what would be considered “normal” degenerative things. They are scheduling me for a thoracic MRI in the next few weeks to make sure we image the area of my complaint. (On another good-luck side note: I’m apparently one of the few people who get Peripheral Nerve Stimulation during an MRI. Basically my chest and arm muscles all twitch to the beat of the MRI sounds. Yay! :frowning: )

I’m going back to discuss all of this with my Urologist on Thursday.

I honestly don’t know what to think or which doctor to talk to. Here’s the thoughts running through me:

Did I form a Neuroma after the denervation? How do I know what that feels like?
Do I have intestinal issues or is it coincidental nerve issues from the vasectomy/denervation? Or both?
Do I have a back problem irritating this nerve all through me, or are the issues in my pelvis making my back hurt?

I’m so frustrated. Some days I put all of this out of my mind and ignore the pain. I find walking and staying busy help as a distraction. I’ve even lost 17lbs now. Other days I get so depressed I can hardly stand it. I start to panic in trying to accept that I may just never be the same again. I get very sad on bad pain days when my poor little boys want Daddy to play with them and I have to say no. I get so short and irritable with my family over little everyday things when I’m in the middle of hurting.

I feel like my body is spiraling out of control and I’m at a loss as to how to stop/reverse the descent into a sentence of lifelong chronic pain. I’m sick of being a whining complainer, sick of hurting and I’m disgusted that I’m not able to fully be the person I want to be as a father in my mid 30’s with two young boys.

I would like to message Drs Parekattil and Brahmbhatt but the last email interaction I’ve had with them was at their orlandohealth email addresses. I have no idea how to ask them a quick question any longer. @urologicmd @S_Parekattil_MD maybe?

I’m glad we have a new group here, even though just talking about this brings tears to my eyes.

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Dear Bryan & all,
First of all - hang in there and don’t give up. There are many treatment options available to you and I do believe that we can help you. We will do whatever we can to try to help you - do not lose hope. Feel free to call our office at 352-536-8761 to setup a phone/skype consultation with Dr.Brahmbhatt or myself and we would be glad to help you out. There are some significant differences with standard micro-denervation (what you had done at Stanford) compared to targeted micro-denervation (please see our previous posts or take a look at our website: www.purclinic.com). Some of the symptoms you are talking about could be attributed to that. I know that you were not sure if it was worth coming to see us before - but I want to re-emphasize that if you could give us a chance - it would be well worth the evaluation and we could try to help you based on our extensive and focused experience on taking care of men with these issues.

The fact that your pain in the testicle has resolved and has migrated upward - to the incision area and above the standard denervation site is actually a good sign that you are on the right path. It confirms that this is likely a nerve related issue and you may respond to other secondary treatments such as - targeted micro-cryoablation (we have a new targeted micro probe that we have started to use - that obviates the need for a skin incision and leads to a quicker recovery), targeted botox ablation, possible low amplitude pulsed radio-frequency ablation and/or sacral neuromodulation (Dr.Brahmbhatt is an expert in this option).

There is a lot that we do not understand about PVPS and there is a lot yet to be learned. Unfortunately - this is the art of medicine. In this field, we do learn from experience and we will do our best to give you the best options based on our experience of taking care of over 2,000 men now with testicular and groin pain issues.

Hang in there and we are here to help you if you would be willing to give us a chance.

Sijo Parekattil, M.D.
The PUR Clinic
Clermont, Florida

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Hi Bryan, it is good to hear from you. I have often wondered how you are making out since the old yahoo forums. I’m sorry to hear that you are still going through all these terrible issues. My heart goes out to you when you talk about wanting to be there for your young boys; I know exactly what you mean having 3 young boys of my own.

From what Dr P posted above it sounds like there are a lot of different options that can help you. Stay strong and if you want to chat I’m available anytime.

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Hi Brian.

We sound very similar you and I.

I had a reversal at year 5 when I became completely incapacitated with left side groin/testicular pain. The reversal was magical. However, I developed horrific back pain at 7 months post reversal. Then at month 8 I developed gout. Then the pain came back on the left, though not as bad. My SA numbers dropped. Then diverticulitis at the one year mark. Everything fell apart after my vasectomy and corrective surgeries.

I think once you get on the inflammation band wagon after an insult to your body, everything gets completely out of whack. Some of us I think, our bodies inflammation response goes into overdrive and then all kinds of illnesses pop up. I will say some courses of steroids were probably the reason my body felt so good after my reversal. It’s as if they turned off my bodies overactive inflammation response. I am quite depressed too.

I feel very badly for you and hope you can take some comfort in knowing your not the only one out there suffering from the effects of vasectomy and corrective procedures.

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Hi Mike, we do sound pretty similar.

Two weeks after my vasectomy, I went into the ER for lower left sided pain. They didn’t scan me, but since that day in 3/2013, I have had several more “attacks.” I had some upper-right quadrant pain in the last few years that never panned out with any diagnosis. Tests have been run, multiple colonoscopies, HIDA scan, ultrasound and the only thing they can tell me is that they see diverticulosis. They’ve never confirmed an attack of mine as diverticulitis, but that’s what the gastro says. Now I have to take miralax every day and travel anywhere with an ongoing “emergency” Cipro and Flagyl prescription. On and off lower left sided pain has become a frequent occurrence for me.

It certainly has felt like dominoes falling.

I’ve had my share of health issues in the past, including: some anxiety, hernia at a young age, hemorrhoid surgery a few years ago, barely high cholesterol, acid reflux. All of those things happened and passed.

Since the vasectomy, now I seemingly get a “diverticulitis” attack 1-3 times a year. My back, which had hurt for short periods over the years now hurts with more intensity, frequency and duration than ever before. My incision from the denervation can be fine some days, numb others and sore other days. I even began walking and changing my diet recently. I’ve lost 17lbs and guess what? I’ve had to stop/limit my walking because I’ve developed Plantar Fasciitis! $300 custom orthotics are on the way. The new testicle pain, while not a searing screaming pain, is just barely sensitive and uncomfortable enough most days for me to constantly guard myself and limit my physical activity.

I feel suddenly like an old man and I don’t know what to do to stop it.

I don’t want to miss out on my life, but there’s a growing mountain of stuff wrong with me that I can’t ignore.

Those at work and some friends would never know I have a problem. I put on a good show. At home, I feel like I’ve become a burden on my wife. She ends up dealing with the kids most of the time and doing things I can’t during times where I’m hurting a good deal. I feel awful in the pit of my stomach when she hears me complaining of yet another something. She loves me, but the look on her face is pretty clear. I think she’s getting tired of all of this and rightfully so. I’m not the man or father I want to be.

Lately, my back has been killing me the most. We’ll see what the thoracic MRI says if/when it gets scheduled soon.

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Hi Kyle,

Thanks for the reply. I really appreciate the offer to talk, no one understands when you’ve become one of the unlucky few dealing with all of this.

I really want to believe that the PUR clinic could help me with this last bit of pain, but I’m so gun shy of having anything else done to my genitals. I can’t imagine what I might become if I made yet ANOTHER bad choice that increased my chronic pain. The guilt and self hatred would eat me up.

For a while, when I began exercising, I was amazed that the pain I had almost disappeared. I began to have more regular and frequent intercourse, played harder with my kids, was more energetic at work. Then the back pain started and slowed all of that down again.

It’s like I’m living with some omnipotent being throwing lightning bolts out at me. Even getting an MRI finally for my back was terrifying. I started contracting and twitching to the beat of the damn machine. The MRI tech just kept telling me to hold still lol.

I’ve heard the word “hypochondriac” thrown around in private at me by certain friends and acquaintances, and I think that term hurts the most. The pain or discomfort I feel is very real. Not something I’ve somehow created in my head. I don’t know any means of making anyone believe me though. It’s a nightmare.

I stayed off of the new board for a while because I honestly started feeling some improvement and I just didn’t want to talk about it. I just want all of this to go away, take me back in time to a few years ago and let me start again.

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Hi Dr. P, @S_Parekattil_MD

Thanks for replying to my new thread.

I want so badly to believe that the PUR clinic has options for me to fully get over this, but I’m so skeptical. Let me restate that in a different way: I fully realize that it is in no way your job to have to convince me of the work of your clinic. You are reaching out and I have to say thank you for that. I can clearly see from these forums the good work you do and the dedication you have to this community. It’s awesome.

I just look at the distance to you from me, the cost of everything (Travel, hotel, food etc) in addition to whatever my insurance company doesn’t cover. Then there’s the fact that I now know I don’t recover quickly from procedures. I have a deep fear of coming to you, only to be unable to fly home because of my pain. That fear extends to making yet another bad choice for my genitals. I would also have to come by myself as my wife and I have zero help in watching or caring for the kids. I think to myself: How in the world could I possibly do this on my own???

Then there’s some peer pressure on me. My urologist has never said one bad word about you or your clinic, but when I mention traveling to see a doctor in Florida, I know I get the “you’re crazy” look. Even with my wife when I mention that a very nice and caring doctor in Florida would like to Skype with me for $100 (I think that was the cost) and then fly to Florida she starts with the comments about how that sounds odd.

I KNOW I shouldn’t care what other people say to me. But at this point I feel like I’m so out of control of my own body that I must be a moron making decisions. I’m lacking in confidence now and even starting the thought process of what I should do, if anything, makes my head spin. I see other people post of their failed targeted denervation or cryoablation and my panicked self says “See, it’s not going to work for you either Bryan. Don’t be stupid. Don’t waste the money that you already have a hard time affording. You’re not a wealthy guy.”

I realize that’s a lot of if’s and but’s. I know. I’m just being honest and upfront with how I’m feeling. I’m just plain scared of so much now.

Give me a few days to think about it and maybe I should just pay for the Skype consult to finally talk to one of you in person. I think sometimes all of this typing makes things impersonal and what I need right now is to know that there is a real human being out there that cares about my well being in regards to this. Not just a handful of doctors all pointing their fingers at each other.

Please, again, I hope I did not cause any offense with my comments. They do not in any way reflect you or your clinic. It’s just me being 100% completely honest with my true feelings and fears. I don’t want to lie about or mask any of this.

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Bryan,

After reading this sentence,

I see other people post of their failed targeted denervation or cryoablation and my panicked self says “See, it’s not going to work for you either Bryan. Don’t be stupid. Don’t waste the money that you already have a hard time affording. You’re not a wealthy guy.”

I feel really bad about some of the posts I have made and am now regretting how open I may have been. If my experiences with Dr. P & the PUR Clinic have in any way influenced you into not seeking further treatment, I am truly sorry, it was never my intent. I was initially encouraged to join this group (or rather the old Yahoo group) by the staff at Dr. P’s Winter Haven office. At the time, I didn’t know what the results of my treatments would be.

But, let me say this, my experiences with Dr. P and the PUR clinic have been nothing but positive. No, I did not get the results that so many others have, but that is not the fault of Dr. P or the PUR clinic, that is my body’s reaction to the treatments. I in no way blame Dr. P for the fact whatever was tried was not successful…by all rights, it should have been successful. My story is different than most on this site, I’m 60 years old, have never had a vasectomy, but have been in chronic pain for 13 years now. My pain started after epi infections and never went away.

As many here have experienced, care for this condition is scant, at best…with many of us hearing the same old “there’s nothing we can do, just learn to live with it” scenario. It was not until a year ago last month that I had even heard of Dr. Parekattil, and felt honored that he would even see me…let alone start this quest toward trying to find something…anything that would help me. I was at the point of trying anything…if I thought going to a witch doctor who would scatter chicken bones at my feet to cure me, damn it, I’d give it a try.

I recently spoke to a P.A. at my local urologists office who happens to know Dr. P personally, and she had nothing but the finest things to say about him. She was struggling to find the right word to describe the lengths that he will go to to help people, and I believe the word she was looking for was “tenacious”. He does not give up, and will keep trying to find the right answer.

One of the problems with a site like this, in my opinion, is that you never hear of the “success” stories. In my discussions with Dr. P, the breakdown of “success rates” is pretty much as follows (and Dr. P…please correct me if I misstate facts): There should be between an 85-92% success rate with the Targeted Denervation. Of those not helped, there is about a 70% success rate with Micro-Cryoablation, and if that also fails, another 70% of those respond to the Botox injections. Since I only had the Botox this past Monday, the jury is still out. But am I going to give up and stop trying to find some relief if it doesn’t work? Absolutely not.

This condition is not my only problem. Over the past year or so, I’ve developed erectile dysfunction as well. Having been through the pills, vacuum pumps and injections, and “failing” those treatments, I’m meeting with a surgeon this afternoon to discuss having a penile prosthesis implanted. Yet another surgery to look forward to…yeah, right!

So I guess what I’m trying to say, perhaps not so well, is to not give up. Do not let my experiences taint any decision you make in seeking future treatments. As Dr. P recently stated, they have treated over 2,000 men now, and if the statistics hold true, 1,973 of the 2,000 have been helped. Those are VERY good odds that what is being done at the PUR clinic is worth seeking out.

I probably won’t be very active on this forum in the future…I certainly do not want to have a negative influence on anyone trying to decide if it’s “worth it” to seek further treatment. I will hang around though, and perhaps check in from time to time and will respond to private messages as always. Bryan, I wish you and everyone else here the absolute best, and hope that everyone here will someday have the kind of outcomes we dream of, and perhaps a forum like this will someday never be needed.

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@Don_H,

I hope you will continue to post here occasionally as often as you like. Your posting your experiences with the different treatments you have received is invaluable information for many of us. I’ve never read a single one of your posts and thought they were anything but positive regarding your experiences, even if you have not gotten the relief you (and we all) seek just yet.

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I want to echo what @mar2k said Don. I hope you continue to share your experiences with us and find them extremely insightful and positive.

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Ya know in contrast to what people believe urologists don’t accurately target where pain is sourcing from in your testi . more importantly , anatomically their correct but they’re go to ? Is to strip the nerves out of your epididymis. and the results are hardly conclusive. why not try a neurologist to heal the cut nerves ? Brahmbaht , M.D of Orlando health mentioned “ often . after severe inflammation nerves may become damaged and be beyond repair” in regards to this fact How are we supposed to have social and emotional health ? Maybe in the future there will be ways of mending broken nerves in comparison to stripping them because these nerves are important they effect your back . Anus . Pelvis . Ect . So why is my question. Why can’t we heal them