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Burning prostatitis like symptoms


#1

Been lurking for a while. My first post. My, “butcher day” was 4-12-17. Prior to this date I never never had any problems, “down there” not even blue balls. I loved to cycle, play with my nephew and was even considering pursueing a non-commercial pilot’s license. I’m 5’11, 180lbs, age 31 (used to) walk 6-11 miles a day, non-smoker, no drugs or alcohol, not diabetic.

Vas clips used, surgery on the right side was no problem, pretty painful on the left but not the end of the world. Minimal bruising, no big deal. Had 5 days of downtime on the couch. Excessive swelling on the left once I returned to work. Nursed that with hot baths and a lot of ibuprophen for about a week. Except the occasional mild twinge here and there, that is/was the only real problem I’ve had with the testicles. Slight congestion but no problem. Testicle/scrotum pain all but vanished.

About two weeks after the surgery is when things went down hill, hard and fast. I started noticing this mild, “burning” sensation directly between my legs slightly closer to my back side. Within 2 days my tailbone, tip of penis and EVERYTHING in between the two was on FIRE. I am no stranger to pain. I’ve been splashed with molten aluminum a lot in my life(1350 degrees F), had 2 molars shatter in my time, been hurt in heavy industrial accidents and such. What I have began experiencing is easily pain I never knew existed. It is so bad I frequently find myself several hours into my work day and don’t remember getting dressed or even the trip to work. There have been times I’ve found myself home, sitting in a near scalding hot bath (which helps) only to realize I can’t recall driving home from work or getting into a bath. The pain is literally so severe most of the time I can only describe it as, “a blackout effect”.

Returning to the office who did the surgery quickly got me pushed out of the door. “You need to wait longer and see if you heal” they will no longer speak to me. I’ve seen three other doctors since. One was a urologist. They are all, “very willing to listen and help” until I utter that magical phrase: “it all started shortly after my vasectomy” from that moment on it’s usually less then 5 minutes and I’m pushed out of the office without an exam. Not one has taken my blood pressure or temperature. I believe one office didn’t even bill me? One doctor treated me like I was some druggy looking for a fix and has offered to send me to a pain clinic, “if that’s what you really want” in a smart mouthed tone of voice. It’s not what I want.

Thankfully, four months in I found, by accident, that 25mg of BENADRYL every 12 hours greatly reduces the burning to manageable levels. Sadly, I’m very quickly building a resistance to this it seems.

Walking, standing, sitting or laying down appears to have no effect on the pain.

If anyone knows of a doctor in the west Michigan area who will give me a chance, PLEASE speak up.

I will loose my respectable job soon because of this. I will loose my home. My relationship of seven years is in danger. My life has been stolen. At the office where my surgery took place I asked the so called, “medical professionals” about the risks. I was lied to about the odds of complication and the, “what could go wrong” was severely downplayed/not even brought to my attention by the very people performing the surgery. I feel I was used by some surgeon for an easy payout. I can’t believe this practice is allowed to be continued daily without warnings. To anyone reading this who is considering a vasectomy, DO NOT DO IT YOU ARE GAMBLING WITH YOUR LIFE.


#2

Hey man, welcome to hell. Sorry that you’re here.

I have the same burning penis sensations off and on, along with scrotal pain and all that fun stuff.

I also get the pelvic floor/tailbone pains you’re speaking of. I think a lot of us do to be honest. Personally, I think the pelvic floor is in spasm due to the pain and it sends the whole pelvis into a constant pain cycle.

There’s a directory here of PVPS specialists. I don’t know if anyone’s in the Michigan area however.

There’s Dr. Jarvi in Toronto, Dr. P in Florida, Dr. Marks in Tucson, AZ.

I don’t know what to tell you other than find a PVPS doc. Unfortunately vasectomy is the golden goose of urology and without it, 90% of urologists would be severely underemployed, hence why most uro’s won’t even acknowledge PVPS or the hell it can wreak on a man’s life.

@MikeO had horrific prostatitis like symptoms which he reports went away after reversal. Considering you’re nearly six months out and things seem to be worsening, that might be your best bet.

In the interim, I would at least try pelvic floor PT. See if pelvic floor stretches help a bit.

I took lyrica and nortriptyline for nerve pain for months, but I didn’t get that much benefit from them. I did find that alpha lipoic acid 600mg per day helped a lot. It’s a natural supplement that actually has research behind it for neuropathic pain. Might be worth a try, it’s cheap and didn’t cause me any side effects.

Good luck to you, just know that you’re not alone in this.


#3

Sorry you’re here man. First thing that I think you need to address is the thought that you’re life is over. It’s not. It’s definitely going to be a lot more complicated for awhile so find someone that can help you with those thoughts ie friends, family. Go see a psychiatrist/counselor to help deal with the mental aspect of this. You might have a long battle ahead of you so try to find ways to cope mentally. Second find a doc that will listen to you and acknowledge there is a problem. Don’t deal with anyone that won’t take your concerns seriously. After you find a uro/GP that is willing to help, explore medications, other than narcotics, to determine if you need them and if they will help. NSAIDS, Gabapentin, Elavil (different medications that help with nerve pain), ANTI depressants are often used to help with pain. They are not without side effects, but may help until you feel better or decide to pursue a surgical option. 4) Try massage/accupuncture and see if they help. Massage has helped a ton by relaxing my muscles. 5) One of the biggest helps has been Pelvic Floor PT. You’re nerves child be pinched by tightened muscles It’s definitely unpleasant, but I can sit without increased pain and have learned ways to relax my pelvic floor which has relieved most of my referred pains. My pain is primarily scrotal with some moderate rectal pressure and groin tightness. Good luck man. Know there’s help here.


#4

@John1, You are pretty early on believe it or not. It may seem like an eternity but it’s not. While I think it’s safe to say you are in the chronic stage since it’s been 4 months, you can still get out of this with your sanity intact. I suggest you start looking into getting a vasectomy reversal. Who performed your vasectomy btw? Please feel free to list your provider here as long as you can stay factual and refrain from subjective comments as much as possible. What statistics were you quoted in your consult and informed consent on the possibility of chronic pain and how you were treated afterwards. I believe all providers will have a bad outcome with this procedure. It’s inevitable. The issue is what were you told prior to the procedure that led you to agree to it and pay for it (it’s elective for pete’s sake) and how were you treated after pain developed. I think inadequate warning of possible pain, poor treatment when pain arises, and denial that a bad outcome has occurred are things that should be called out, NOT THE BAD OUTCOME. All doctors have them. It’s how they deal with them that separates a good physician from one that needs to be avoided. The idea is to change the way the procedure is marketed and advertised so men go in aware of the risks.

A physician that never accepts he has had a bad outcome will always be able to say he has never had one. That’s how the myth of “safe and simple” gets perpetuated.

I think motivated men will still get the operation even if the odds of chronic pain are as high as 1 in 10 just because they want to be sterile. But they need to tell people what the odds are up front. The AUA guidelines here in the states put it at 1 in 50.

Btw, I had awful prostatitis like symptoms until I had a reversal and then they just went away. It was like I had a constant UTI for 5 years until I got a reversal.


#5

@John1 Sorry your here with us. Man as @vasregret suggested you have the best doctors for this in the world go use them. Even if you got to travel half a day who cares, they will help you. In Australia we are not on the ball with PVPS we have nothing. This is a big issue with most of us we all have much same, burning, pinching, abdominal pain, flank pain, prostate issues just to name a few. The medication thing i have tried all of it and it just buys you time, meds do not fix you. Yes we are all different but meds just caused more issues with me and i am paying the price dearly. Example there are people in Australia who tell me yes time fixed me, what they dont tell is daily antidepressants and oxy, in my world this is not fixed its a bandaid. Sorry for ranting going off subject, go seek those doctors they will help you.


#6

What kind of vasectomy did u have? Sounds like u r having an allergic reaction.


#7

Sorry about the explosion. Just waking up everyday with this has obviously worn me thin.

Thanks for the advice, it is appreciated.

I can’t specify where I had the surgery done for personal reasons at this time. It is a respectable place, everyone was nice and treated me well. After the surgery when I began having problems I called back. Everyone was busy and the receptionist took down my concerns. Within 20 minutes I had two nurses calling me. I seem to remember one calling me about a week later just to check on me. One invited me in for an exam which I attended but, “everything looks normal”. My only complaint is, before the surgery, I asked several people at the clinic about the odds of complication and what are some of the possible issues. Only one person gave me a number, “1 out of 1000 but it just takes longer to heal” while the other told me, “complications are so rare you shouldn’t even worry about it”. This is where my angry outburst came from. Once the basic exam came back with nothing I was told there was nothing else they could do for me and I was sent somewhere else which turned into a dead end.

1/1000 leads me to believe someone had a random unlucky infection or had the surgery then didn’t take the nesessary downtime, causing their problems. If I was told the odds where 10%, 4/100 or even 1/100 it would of been a huge red flag and I would of immediately wanted to know why the risk is so high. Once I was more educated on the matter I’m certain I would of backed out. This elective procedure was not a life necessity, just more for convenience. Everyone I talked to in person whom had the procedure told me it was fine, no problems. It was literally just supposed to be 3-5 days of inconvenience with a little pain handled by Advil. Shame on me for not doing my homework I suppose.

I’m not denying that I may have had a predisposition for my pain. Everyone is different. I have spent a significant amount of my life in computer chairs in the work place and at home playing with technology. Perhaps all of the extra sitting has caused abnormalities in my pelvic region.

They used titanium clips on me. I had the allergic reaction theory come to mind the moment I realized that Benadryl greatly helped my situation. This is something I will try to explore later. However, I haven’t taken it for two days now and I’m laying down with very little burn. It does raise my heart rate and BP when I take it so perhaps I might be increasing blood flow to the problem area, helping the root cause in another way. Hard to say.

If symptoms show improvement over the next month I will wait for up to one year. At that time if they are still a disruption to life I will be pursueing a reversal. Not a fan of the surgical idea but at 31 I still have a lot of life to live.

Having a place to speak has obviously been good for the psychological factor in this.

Once again, sorry for the outburst. I really appreciate the suggestions. I will continue with updates from time to time. I wish you all the best in your journey.


#8

Don’t apologize for the outburst. You’re angry and rightfully so. You’ve come to the right place to vent.

For now, you’ll just have to find something that works to ease your pain. It’s been a lot of trial and error for me.

I’m 11 months post-vas and although I can do most things that I used to do, I’m in pain most of the time doing them, which sucks.

It’s funny that you mention increasing bloodflow to the area. This is actually a theory that Dr. Jarvi (a top PVPS doc in Toronto) mentioned to me about a possible component to our pain. I actually find that NSAIDs make my pain worse and it’s interesting because they can affect clotting. Maybe he’s onto something about the bloodflow theory.

@Choohooo said he had a lot of relief from taking benadryl in his early days. Why? Who knows. But what you’re saying is something that a lot of us are saying.

In the meantime, I would strongly recommend finding a top-notch PVPS doc. Perhaps get yourself up to Toronto to see Dr. Jarvi.

Hang in there man, someday we’ll have real answers for this shit.


#9

The statistic 1 in 1000 is bogus. You should ask them where they got the number. There is no research that supports that number. If they tell you Campbell Walsh Urology you can tell them that the 1 in 1000 statistic it cites is s circular reference to a research paper that cites Campbell Walsh. Its a giant lie.


#10

Once this is all said and done I plan to return to the location of the surgery and explain my story in an attempt to get some changes made. Will it have an impact? I doubt it. As stated in an earlier post the vas is the, “golden goose” and doing anything short of legal action will probably have no effect. Something I’ll think about later when I’m in a clearer state of mind.

As a small update, about an hour after my post I had swelling/pain/burning in the epididymis, 15 minutes later everything was on fire again. 50mg of Benadryl and the unavoidable nap that followed - woke 95% better again, just like that. Seems I am doomed to a constant, “Benadryl drunk hangover” until this is figured out. At least it works for now.

NSAIDs have had little to no impact for me either.


#11

@john1 Fellow Benadryl junky here. I haven’t taken it in years but it was my friend early on. Any headaches, neck or back pain? Just curious. I have my own whacky theories about what benadryl is doing. Unfortunately, it’s one of the “dirtiest” drugs ever produced. By dirty I mean it works for a myriad of things and no one has a clue why or how. Personally, I was taking it before bedtime. I noticed 25mg would get me through until lunch the next day, 50mg would give me until 8pm. The nice thing about taking it before bed is your metabolism slows so it sits in your system longer and you get more out of each dose. Just a thought. In case you are wondering, I experimented w/ Zyrtec, Allegra, and Claritin – none of which had the same affect as benadryl. They are considering “non-drowsy.” What these also means is they don’t cross the blood-brain barrier so you don’t get the same effect. If you ever want to chat, feel free to reach out. Before you get too frustrated with medicine, understand that sifting through this site will get you more informed than 99% of all physicians out there with regards to PVPS. Doctors just don’t know. A side note on Benadryl, it has been linked to early onset dementia so I wouldn’t go crazy with it.


#12

@Choohooo Thanks.

I try to take it very minimally but 25mg for sleep and 50mg in the afternoon/lunchtime is exactly what I have come too. I found it by accident while trying to get sleep one painful night. I do not have allergies so I’ve never really used it prior to this. I get results in as little as thirty minutes and once the pain starts to ease it’s very quick to reach the maximum effect. Interesting. I don’t care for it much because after 2-3 days of use I start feeling pretty… poor… both physically and mentally. The cognitive side effects are not ideal for both my personal and work life. It makes me incredibly groggy of course.

No real headaches or other pains. Hips and thighs are a bit sore but that is muscle pain most certainly caused by a change in my walk since this started.

Did you pursue a reversal and if so, did it help?


#13

@John1 Also another thing that relieves pain is Viagra or Cialis in small dose. More blood flow seems to help. But same thing its a bandaid its not a full time fix. I used it when things were unbearable before reversal.


#14

I have NOT tried reversal nor have I done any other surgery since the vasectomy. If you read my threads, I’m the whole body reaction guy. My vas pain is completely tolerable. Occasional zingers into my rectum that make me pause but it isn’t constant. My cord and inguinal pain is a 2-3 out of 10. My bigger issue is the 3 year headache, knee pain, hip pain, back pain, shoulder pain, neck pain and eye pain. I was recently diagnosed with intracranial hypertension and fibromyalgia. I go to Mayo Clinic on Tuesday to meet with the fibro team there and go through their pain self management program. I may eventually pursue a VP shunt through Johns Hopkins university but I have a few other tricks up my sleeve I’d like to try first before I punch a hole in my cranium. I’ve tried a few meds (naratriptan, verapamil, testosterone cream and injections, and cymbalta), all with limited success. Verapamil was probably the most effective but I didn’t really notice it until I stopped.

I’ve considered reversal. It’s still a possibility for me. But…it’s such a long shot I’m afraid to roll the dice on getting worse and getting my fertility back. I’m neck deep in some deep stuff. I’ve thoroughly enjoyed being sterile and sex is about my only release in life anymore. Unfortunately it’s come at quite the price. @John1


#15

I second Kyvas on the Pelvic Floor Physical Therapist.

My pain has been in my groin, burning at the tip of my penis, and then general pelvic pain that shifts between my inner thighs, hips, lower back. I feel pretty certain that the vasectomey was a catalyst for Pelvic Pain Syndrome.

Over the last few weeks as I have started taxing anti-anxiety medication and starting a stretching program things have gotten substantially better. A bit of a flare-up today after being pain free for almost 6 days, but in the pelvic pain world this a part of the new normal.

Also, I did a consult with Dr. P from the PUR clinic. I found him to be be very helpful, informed, and he has some non-invasive tricks up his sleeve to try before deciding on something more invasive. It’s not covered by my in-network insurance, but to me it was worth it.


#16

Thanks for the continued advice. I have been stretching and trying to work the muscles in my pelvic region as much as I can. I’ve noticed significant improvement over the last week and a half with the burning issues and daily use of off the shelf NSAIDs. Not great of course but tonight as I lay in bed I feel better. Better then I have in the last 4-5 months. With the overwhelming pain brought under control I’ve noticed a constant 2/10 pain in the left cord region that is annoying but not made worse by movement. Easily liveable compared to earlier.

I’ve also come to realize just how swollen I am from congestion, which thankfully doesn’t hurt much. There hasn’t been any bedtime fun since the vas so the swelling could turn into pain but, for now, seems fine. I’ve always had a very verticle, feet close together stance my whole life. I’m swollen so much that my natural stance is now much wider, my feet are over 20 inches further apart now when I’m, “standing casual” and I slouch terribly. I’m sure my walk has been altered a lot more then I thought as well. Something I simply didn’t notice due to the hellfire. This leads me to believe my sudden posture change has been the cause of many of my problems.

I have ordered some papaya seed as suggested in another thread here to try and see if I can get things back to a more normal size. I have access to a wonderful massage therapist as well.

Mentally, I am in a much better place.

I work with a lot of young gentlemen who have considered a vasectomy and I wasn’t shy about mentioning I was going for one. After they watched me go from, “the guy who can do everything, help anyone and is always at work” to hobbling around like a 95 year old man for 4 months and missing at least one day a week, many of them wanted to know what was going on. I haven’t been condemning the procedure but have began sharing my story with those who where curious and I urge them to do their homework first, so they fully understand the true risks and possibilities. Something I wish someone had done for me.

Most of us end up here due to pain which is a terrible thing to gather over but for what it’s worth, your time and advice given on this forum has made my life, and the lives of many others, easier and I really appreciate it.

I just might get out of this with my sanity intact.


#17

Here’s a thought. Do you have any stomach issues? I just got done with a short chronic pain chronic fatigue course at Mayo Rochester. Interstitial cystitis is not uncommon amongst the chronic pain group. It is essentially “IBS of the bladder.” Probably the best explanation I’ve heard. I’ve got it but it comes and goes. I didn’t have IBS early on but I certainly have it now. Good luck.


#18

Prior to my reversal I believed I had interstitial cystitis. I had horrible prostate issues, burning urgency. That all went away as soon as I got my reversal. I can’t answer why it happened but I suspect getting the scar tissue out, which had two clumps of non-dissolveable sutures on each end as well as the cauterized ends and restoring the flow of sperm into my seminal vesicles had some sort of anti-inflammatory effect. Or perhaps the scared closed off end of my vas was somehow causing irritation/inflammation to my seminal vesicles and prostate.


#19

I’ll add my two cents in here.

I also have the burning tip of the penis pain and have for the past 11 months since the vas. Dr. Jarvi said it was very unusual, but believed it may be a type of regional pain syndrome or referred pain. I really hope he’s right, and I’m undergoing reversal next week (Sept 13) so hopefully it helps me. Dr. Jarvi really isn’t sure if reversal will help, but he believes that clearly the vasectomy was the ‘event’ that caused this and the best bet is to try to undo the damage done. I like that way of thinking, it’s restorative and logical.

I do get some relief from the burning penis pain when I do pelvic floor stretches. It still comes and goes every day however. Interestingly enough, yesterday I had no time in the morning to stretch and the burning was pretty bad at the end of the day - this morning, I stretched and not too bad actually, about 50% less pain than yesterday.

If reversal fixes this, you guys will be the first to know, but I’ll always wonder why and what causes this particular symptom that some of us have.

@MikeO it’s interesting that you mention seminal vesicles possible being inflamed, because @choohooo mentioned chronic vesiculitis as a possible component to our pain. After all, chronic vesticulitis can refer pain to the tip of the penis and probably the urethra, etc.

I think the sooner we get a real reason as to ‘why’ PVPS happens, then more treatment issues with greater efficacy will emerge. Unfortunately PVPS is quite multi-modal, so I think in the future, treatments will be much more multi-faceted and tailored to patient needs than they are now.

Man, I certainly hope it happens in our lifetimes. And soon too!


#20

I don’t know why it happened, but as soon as I got my reversal, and this was 5 years ago, I virtually stopped having any sort of urgency or feelings like I had prostate/UTI type feelings. It just stopped. I have to remind myself how much better I am after reversal then I was because it’s things like that relief from prostate issues that add towards my reversal being worth it.