Donate

Not Vasectomy Pain, But Similar


#1

Hello,

I hope that I’m able to post this here, I haven’t found anything similar on the internet so I’m hoping that I can get some support here (through assistance in discovering therapies, as well as just being able to have someone understand the issue.) Sorry this is going to be wordy.

So the problem started in May, one morning I woke up in horrible pain. It felt like I had just been kicked in the junk, but only on the left side. It was between a bolt of pain to a constant ache. I called my doctor that morning (a Wednesday) and they were able to get me in on Friday morning, they did say if it felt out of place to go to the ER. There were a few hard lumps that I noticed.

My doctor did an exam, noticed one of the two hard lumps (one had softened). He also performed a full STI/STD panel, which was painful in its own right, and ordered a urinalysis. He put me on a 10 day course of doxycycline as a preventative measure. He ordered an ultrasound, and referred me to a urologist. He commented that men with either a foreskin or a longer remainder tend to get UTIs frequently, and this could have been caused by a bacterial infection.

Ultrasound revealed a benign cyst, doctor said don’t be worried about it, but to go to the urologist still. He put me on another 10 day course of doxycycline. Urologist visit was less than stellar. Said, foreskin wouldn’t be causing any infection issues. He asked if I could take Advil, and when I said I could to take 800 mg three times a day. I can’t take that much. He offered a prescription for naproxen, which bothers my stomach even worse. So I just dealt with it. Some days have been better than others, but other days can be horrible.

So about a month ago, the pain got to the point even walking became difficult. And I called the urology office back to get an appointment, and requested to not see the first doctor again. Saw a CNP (who had a student in tow), explained everything, he checked the ultrasound, did an STI panel again, and did a full exam (twice actually the student nurse did one as well.) He determined that it wasn’t urologic, and that I had a few options: a stronger antibiotic (which he suggested not to do as he didn’t think would be effective), speak with a male reproductive specialist (in this case it would be a fertility doctor), or speak with a surgeon about exploratory surgery (he mentioned that they would also be performing a circumcision at the same time as that surgeon prefers to do them at the same time to reduce the risk of a UTI or other future infections.) Since antibiotics didn’t seem to make sense, and surgery seemed excessive, I went with the fertility doctor.

They were able to get me in the next day, and he had for the most part determined that there was a nerve that was causing the issue. He too had a student (a full MD this time) and performed a full exam (twice). He ruled out prostatitis, and said that he wasn’t going to do an STI panel since they did one the day before. Based on what he saw and noticed during the exam he thought it was a chronic orchialgia possibly from congestion. I have not had a vasectomy.

He mentioned that he prefers to treat conservatively first before moving on to any type of surgery. He first put me on nortriptyline 10 mg at bed. I took it for a week before the side effects got to me. He changed me to gabapentin 300 mg ramping up to (as high as) 600 mg three times a day. I’m currently at 1200 mg. I have not noticed any difference in pain.

What I’m experiencing is between a constant dull ache to shooting pains that can be breathtaking in pain. Movement tends to make things worse, so does sitting. Wearing tight or loose underwear doesn’t seem to make a difference, nor does wearing a jockstrap or suspensory. I’m at a loss on what to do next. The fertility doctor said he would prefer to not have the denervation done, and only suggests an orchiectomy in terms of cancer. Are there any other treatments that I should try, or therapies that I should ask for? I’ve hit my deductible for the year, so cost for the remainder of the year is less of a concern. Thanks for reading this.


#2

Where are the lumps? This sounds like pure nerve pain to me. If so, something is triggering the nerve through pressure on the nerve or there is nerve damage from some other cause. Very few people on this forum have had good success with denervation so I would save that option for later.


#3

Also, what region of the country are you in? We may be able to point you to a good uro or pain specialist who deals specifically with pain in this part of the body.


#4

They’re in the epididymis. They come and go as they please. It feels often like a piece of cartilage when they’re firm. The first time it was the size of a pea at the head of the epididymis. The second urologist noted that there were cysts on both testicles. He thought that there was some sort of injury that caused this, but none that I can remember happening. Getting an erection seems to cause things to get worse, “finishing” is frequently impossible because the pain ramps up and takes over from the pleasure aspect.

I’m in the US, New England specifically.


#5

Have they done a semen culture to rule out infection in the epis, prostate, seminal vesicles?

Why were they thinking UTI? Did you get a urine culture done?

Why on earth is this doctor recommending circumcision? If you’re not having recurrent UTI’s there’s no point. Nowhere in your story do you say that an infection was found, is that correct?

As for denervation, yes a lot of guys here have had bad luck with it, but I think the guys who don’t have a nerve injury from a vasectomy fare better with denervation. Maybe.

Either way, I’d be looking into getting some cultures done first. Something doesn’t sound right here.


#6

When i first stated dealing with post vasectomy pain i spoke to a neurosurgeon with whom i work. He said he gets a male patient every couple of months who has a pinched nerve in the lower back and who’s only complaint is testicular pain. The pinched nerve is often an incidental finding on a mri for pelvic pain. I obviously can’t say what’s going on with you but it might be worth looking outside the testicles for the cause of the pain ie pinched nerves, hip dysfunction hernia, etc etc. The lumps may not be what’s causing your pain but are easy to implicate because they’re something you can easily feel. Just some thoughts. Good luck.


#7

@vasregret My GP suggested a circumcision in the event it turned out to be a UTI, I’ve been considering one for many years, but definitely don’t want it done as part of another procedure and just have the skin hacked off. At vista #3 the CNP I spoke with said their surgeon does them when there’s a history of UTIs. Since I wasn’t interested in having it done, nor having exploratory surgery, I didn’t ask too many questions surrounding anything, nor did I speak with the surgeon. I’ve had 3-4 UTIs over the past 15 years, and some irritation.

The doctor wasn’t certain what it was, he wanted to rule everything out. He did a urinalysis to check for UTI, and it was negative. They have not done semen cultures. Both of the urologists wanted to avoid a second course of antibiotics since things weren’t pointing to an infection. The CNP and the fertility doctor did a DRE and didn’t find anything worth noting.

I’m not particularly fond of the medication, the week of the nortiptyline was hell, the gabapentin has had less effect effects, and I’m still in the “ramp up” phase, but I’m not wanting to be taking this long term.


#8

I’ve decided to stop taking the gabapentin, i’ve felt like I’ve been in a fog for the past day or two and have been having trouble remembering basic thing. (My partner found me staring at a cup of coffee, and asked what I was doing, I told him that I couldn’t remember why I had a cup of coffee in my had. It was quite unnerving.) I’d rather deal with the pain than live like that.


#9

This sounds like epididymitis:

&

It looks like the management cascade is somewhat similar to congestive PVPS, except in PVPS you know where the congestion cause is as you have been through a surgery, and so reversal of the vasectomy is usually the first surgery attempted after pain management and antibiotics are exhausted. If you are not a PVPS guy it looks like epididymectomy is the preferred surgical approach if more conservative measures fail.


#10

For info, that is all from the UK so treatment may be done differently elsewhere. Hope you get sorted out and avoid surgery.


#11

the first doctor said it was epididymis, which is why he put me on the doxycycline and ordered the STI panel. He wasn’t sure of what it was from. The ultrasound revealed congestion, and the last doctor said they prefer to avoid doing surgery, but he suggested a denervation over an epididyectomy in an effort to preserve fertility (I’m not interested in children, and neither is the better half.) I’m really conflicted over what to do, the ache/pain can get out of hand at times, but things were pretty bad on the medications.


#12

I think you need to:

  1. Find a better urologist, specifically one who treats urological pain patients.

  2. Try different antibiotics. Doxycycline is good, but won’t treat everything. Avoid Cipro. Bad side effects, fda black box warnings.

  3. Get a semen culture. Insist on it. Wacking off in a doctor’s office is not fun, but a culture could reveal a lot.

I can’t believe they only did one round of antibiotics and then went straight to recommend surgery. It’s madness. Just because your urine sample doesn’t show a UTI or STD does not mean that you don’t have an infection in your epi’s. After all, that’s where your pain is coming from.

I’ve come to realize that there are a lot of shitty urologists out there, actually, id have to say that most urologists are just glorified vasectomist and have no idea how to treat a urological pain patient.

Now the urologists who treat pvps and pain patients really seem to know their stuff.

Hope this helps. Good luck man.


#13

I wish I had options, I’m on an HMO plan right now. So I am restricted to who I am able to see because of that. Medical expenses this year have been pretty high, and I’ve hit my deductible for the year so there is, unfortunately, a benefit of staying within the current clinic for at least the remainder of this year. I do plan on changing to a PPO plan that is less restrictive next year. It really came down to cost, and last November, I didn’t hurt. The simple fact of the matter is that where I live, and the clinic I go to, has one male and one female fertility doctor, one surgeon (who does everything), and one “general” urologist, and about 3-4 CNPs that do the rest. This clinic is considered the best in the area.

I will see what they say about antibiotics. The last two doctors I spoke with seemed to want to avoid antibiotics, as they did not feel it was needed. With my stomach the way it is, I need things that are extremely gentle. It has been years since I’ve had anything beyond amoxicillin or doxycycline. I have a follow up call scheduled for next week.

What exactly does a semen culture do/offer? I’m hesitant to just tell him I want it done, if I can’t explain my reasoning behind it.

The timeline was a bit more spread out. My doctor saw me in May, put me on the doxy, ordered an ultrasound, and then another treatment of doxy, he also ordered the referral. So it was a total of 20 consecutive days on doxycycline. It was the end of June before I saw the first urologist (who was pretty much useless), he said foreskin issues wouldn’t have caused this. Did an exam (a fairly rough one actually), said it was a spermatocele, and told me to take advil or offered a prescription of naproxen. Sent me on my way. The rest of June, all of July, and the first half of August was rough. Spoke with a CNP this time, he did an exam (as did the student) and offered more antibiotics, a referral to a fertility doc, or a referral to a surgeon for exploratory surgery. So yeah, it was a bit quick to jump to surgery, but it was at least not the only suggestion. The fertility doc was concerned with making sure if I wanted kids I could still have them (we’re not, and we would adopt first anyway.) So he went with medication.

I skipped the afternoon/noon dose of the gabspentin yesterday, my left nut made itself known quite prominently, but by 7 PM I felt like myself. The fog had lifted. I did take one over night, mostly to make sure I could actually get a night’s sleep. But I skipped the morning dose as well. And holy hell, do I hurt right now. But between feeling like I wasn’t there, and hurting, the pain was preferable. I can at least do my job and not get lost in the middle of a simple transaction. I really don’t remember Monday - Wednesday. I got to my desk and realised it was Thursday.


#14

So a semen culture will show if there’s an infection in your semen, which could be in your testicles, epi’s, prostate, seminal vesicles, ejaculatory ducts, etc. It might also show if there’s a blockage and it’s causing azoospermia (infertility). Just because he did a digital rectal exam doesn’t mean you don’t have prostate issues. Has a PSA test been done?

A semen culture was the first thing my PVPS urologist ordered when I went to see him, unfortunately it was negative, so yeah my issues are nerve and congestion related, but it’s a good first step.

If your urologist can’t understand that, RUN. I understand the reasoning behind avoiding antibiotics, but some guys actually can get chronic epididymitis from an infection that takes a LOOOOOONG time to clear. Some bacteria is resistant to antibiotics and requires different classes to treat, etc.

I’ll tell you right now that jumping into surgery is stupid and dangerous. Look at how fucked up us PVPS guys got some the ‘safe and simple’ snip!! I’m not sure what the surgeon expects to accomplish by exploratory surgery.

I feel bad for you about your health insurance, I’m in Canada and everything’s covered by the government here. It’s not perfect, but at least I didn’t have to take out a loan to get a reversal for pain.

Is there a way you could go on a ‘vacation’ to an area with a good uro who specializes in pain syndromes and require medical attention while you’re on said ‘vacation?’


#15

It did me like that too but also I always broke out in hives from taking it. And when I increased the dose to stop bad throbbing gabapentin gave me awful shakes, as if I drank a whole pot of coffee. So foggy and shaking…mmm…yeah no thank you


#16

Gabapentin makes you dumb for sure. It helps me when I can’t sleep though. I try to go without it when I can. I don’t want to “need” any drug. Especially the kind your CNS can adjust to, requiring painful withdrawals.


#17

My wife found this article a while back and I’ve been meaning to post it.

Apparently gabapentin (neurontin) and lyrica are actually really bad for your brain.

Glad I don’t take that crap anymore.

Amazing how things like alpha lipoic acid have better results in clinical trials, yet are only prescribed in countries where docs don’t have drug companies in their back pockets!


#18

Rob,

I agree with all the other guidance above on chasing down an infection, you may find a specific targeted antibiotic from a culture is what’s needed.

I noticed above you were offered naproxen, it’s a much better NSAID than the ibuprofen in Advil. I would go and get a hold of that and give it a try to see if that helps with the pain & particularly reducing the inflammation. If high dose NSAID helps it might get you away from needing things like Co-codamol or gabapentin.

When I was in severe post vas pain my painkiller ramp was

  1. Paracetamol and Ibuprofen together,
  2. Naproxen,
  3. Co-codamol 30/1000 - the last is opiate based, sedating and potentially addictive but when things got bad it really worked…

#19

I wish I could take something stronger, but anything beyond a half an Advil tablet in a day or a baby Aspirin makes me quite ill. I am also allergic to Tylenol, so that is unfortunately a no go. I had a horrible headache last week, and took 200 mg of Advil and had a stomach ache for two days. I was prescribed 1000 mg of naproxen several years ago due to a shoulder injury. I spent a day throwing up as it messed my stomach up so bad. I wish I could take something stronger, but unless I want my stomach to be a mess, baby aspirin it is.

I took the last dose of gabapentin last night. “Lefty” was certainly making his presence known all day yesterday, and even a couple hours after I took the evening dose he was complaining. Woke up in the middle of the night with shooting pains. Did I get relief from it? Sort of, but definitely not worth the side effects.

I found out I know a couple of people who went through this before. One had the denervation surgery, and the other an eppididiectomy. Both were happy with the results and recommended it. I do want to rule out any infection before going to the extreme measures. I don’t know how to bring the subject up with my doctor though, saying “Doc, I’d like to jerk off in a cup for you, and have you run a culture on it.” seems pretty forward. Then again, during last night’s “activities” I had to stop because it hurt so much.

Thank you for your advice. I appreciate it.


#20

That sounds pretty bad, it might be possible to work with a doctor for a solution to take pain relief with misoprostol or something similar, your doc would need to advise on that though.

I would def get the culture done and work out the situation with antibiotics for resolution before going to surgery.

Hope you get sorted.