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About ten years ago I had around 9 months (maybe a little more) of chronic testicular pain. It felt like someone had kicked me in the crotch about 10 minutes ag

About ten years ago I had around 9 months (maybe a little more) of chronic testicular pain. It felt like someone had kicked me in the crotch about 10 minutes ago, all day every day. I've been in more pain from some injuries I've had (bike accident), but this lasted for much, much longer. It also made sleeping difficult, as for some reason lying down was extremely uncomfortable. I ended up sleeping in a chair for several months. I ended up cancelling a conference visit and talks just because I felt so awful and I wasn't even sure I could sleep in a hotel away from home. One thing I look back on and realize now is that it really changed my behavior. My temper was shorter and my judgement about how to interact with others was much poorer. Fortunately, it eventually resolved itself. I used to have flareups for a week or two every few months, then for a few days less often, and now it's been a few years since I've felt it. All of which is to say I feel for the author. This sort of thing sucks. For anyone else who's experienced any sort of similar pain, I would encourage you to continue looking for solutions. If you can, enlist family or friends to help you do so. I think that after a while you forget what it feels to be pain free, and it becomes easier to accept your current state. But once my pain resolved itself I realized how much of a difference it made in my life.

qppo 6y ago
Another person with orchialgia here, it sucks. Mine's been on and off for almost 20 months now. After three urologists I found something that worked (and it's like a miracle). Something you touch on here implicitly is how much it changes little things in your life. For me it was long commutes, I can't sit for extended periods of time. What I would add is that doctors can be great for things they recognize and can treat. With something like chronic pain that can manifest due to numerous causes and doesn't outright kill you, doctors can be very unhelpful. It took a really bad bout of pain to see a new urologist who diagnosed it as a damaged nerve and prescribed a device that works. Not everyone is the same, but my experience led me to believe that if you suffer from chronic pain you just have to keep shuffling specialists until you find someone that's read different research than the others that works.
- autarch 6y ago
  Yeah, regarding doctors I'm not sure anything they suggested help. The first one I saw that it was an infection and gave me antibiotics. That didn't seem to do much. Then as it persisted another urologist thought it might be urine backflowing down my vas deferens and I took beta blockers to improve my urinary flow. Finally the urologist basically said that sometimes after you have an infection you can have idiopathic pain for a long time afterwards. And maybe that was it. It pretty much went away on its own. I feel quite fortunate for that, because it really sucked. If it had persisted I suspect I would've seen quite a few more urologists!
  - rriepe 6y ago
    I had something like this that landed me in the ER. I got a diagnosis of deferred kidney stone pain at the time. I too was all about which way to sit in a chair. I can't imagine that going on for weeks.
  - andreygrehov 6y ago
    I had a similar problem, no urologist could tell me anything meaningful. After some time and a gigantic load of stress, I randomly stumbled upon a guy who had the exact same problem as mine. He did a shit ton of analysis, tests and scans. In his case, it ended up being a pain coming from a herniated disc. Coincidentally, he had the exact same disc being herniated as mine - L5S1. Once he told me about that, it all clicked for me, as I usually had pain sitting in a weird position. My brain just couldn’t identify the origin of the pain, and I thought it’s coming from my balls.
    - autarch 6y ago
      Given that it resolved itself on its own, I'd assume that wasn't the case for me. But it's very interesting how referred pain can be so confusing!
- acalzycalzy 6y ago
  What worked?
wycy 6y ago
That sounds horrific. Did you ever find out what the cause was?
- autarch 6y ago
  See my other comment here - https://news.ycombinator.com/item?id=24948175 https://news.ycombinator.com/item?id=24948175 The only thing that made sense was that an initial infection triggered idiopathic pain long after the infection was gone.
post_break 6y ago
You're describing exactly what I went through! Two rounds of antibiotics, pain meds. Finally gabapentin was the only thing that worked and now I'm slowly weening myself off of it. It's been hell. I had to sleep on the couch elevated. I could barely walk. Everything looked fine down there physically, two ultrasounds, MRI, nothing looked odd. I'm really hoping it never comes back because it was like either someone was squeezing it off and on or someone replaced the boys with pine cones. The pain was just so bad I wanted to get rid of them. Thank god for the lock down because I was working from home during this. I probably would have lost my job or something had I had to go to the office.
- autarch 6y ago
  Yeah, I did consider some surgeries like an epidydymectomy (the doctors though that was where my pain was coming from). Fortunately it did slowly resolve itself and I didn't have to do that. I hope your pain resolves itself soon. It just sucks so much to have to deal with this.
autarch 6y ago
Self reply to add an addendum ... I almost forgot the follow up. I've also experienced weird GI pain with no cause and reflux without any indication of reflux (throat looks fine, swallowing is fine, etc.). For the GI pain, my GP prescribed a relatively low dose (20mg) of Amitrypyline, which is an old anti-depressant. Later, the GI specialist I saw recommended I double this to 40mg. Apparently it's good in treating idiopathic pain like mine, and I it may have helped me. It's really hard to say because a lot of my pain issues have occurred on and off over long periods of time. So maybe the improvement is just a natural resolution of some underlying issue, or maybe it's the medication. The theoretical mechanism of the drug is that when taken before bed it helps you sleep more deeply, and during good quality sleep your body is better able to repair itself. Absent any reason not to, I'll just keep taking it.
sebmellen 6y ago
It feels very strange to put out there that I've had the same issue, but it seems to be very common, and yet is rarely spoken about. I had the same path as you — infection, antibiotics (through an IV), and then a few weeks later the pain sort of disappeared! Now and then I wake up with the same pain, maybe twice a month, and it lasts for 1-3 days. But otherwise it's mysteriously disappeared. (I feared it may have been torsion/Bell Clapper Deformity or something like that.) I think you may find this article interesting: https://www.health.harvard.edu/blog/finding-help-for-pelvic-pain-a-patients-story-20090203212 https://www.health.harvard.edu/blog/finding-help-for-pelvic-.... There is another article I found where two doctors noted that men in high-performing careers (ostensibly with a lot of stressors) often complained of chronic testicular pain. They had developed this sort of massaging device [...] which worked remarkably well for their patients, some of whom had even had testicles removed because of the pain, but oddly I can't find it now.
- autarch 6y ago
  I never had any pain or difficulty urinating when I had the pain symptoms. But what the article describes is interesting. If my pain comes back (fingers crossed it never does) I'll try to keep this possibility in mind.

qppo 6y ago

Another person with orchialgia here, it sucks. Mine's been on and off for almost 20 months now. After three urologists I found something that worked (and it's like a miracle). Something you touch on here implicitly is how much it changes little things in your life. For me it was long commutes, I can't sit for extended periods of time. What I would add is that doctors can be great for things they recognize and can treat. With something like chronic pain that can manifest due to numerous causes and doesn't outright kill you, doctors can be very unhelpful. It took a really bad bout of pain to see a new urologist who diagnosed it as a damaged nerve and prescribed a device that works. Not everyone is the same, but my experience led me to believe that if you suffer from chronic pain you just have to keep shuffling specialists until you find someone that's read different research than the others that works.

autarch 6y ago
Yeah, regarding doctors I'm not sure anything they suggested help. The first one I saw that it was an infection and gave me antibiotics. That didn't seem to do much. Then as it persisted another urologist thought it might be urine backflowing down my vas deferens and I took beta blockers to improve my urinary flow. Finally the urologist basically said that sometimes after you have an infection you can have idiopathic pain for a long time afterwards. And maybe that was it. It pretty much went away on its own. I feel quite fortunate for that, because it really sucked. If it had persisted I suspect I would've seen quite a few more urologists!
- rriepe 6y ago
  I had something like this that landed me in the ER. I got a diagnosis of deferred kidney stone pain at the time. I too was all about which way to sit in a chair. I can't imagine that going on for weeks.
- andreygrehov 6y ago
  I had a similar problem, no urologist could tell me anything meaningful. After some time and a gigantic load of stress, I randomly stumbled upon a guy who had the exact same problem as mine. He did a shit ton of analysis, tests and scans. In his case, it ended up being a pain coming from a herniated disc. Coincidentally, he had the exact same disc being herniated as mine - L5S1. Once he told me about that, it all clicked for me, as I usually had pain sitting in a weird position. My brain just couldn’t identify the origin of the pain, and I thought it’s coming from my balls.
  - autarch 6y ago
    Given that it resolved itself on its own, I'd assume that wasn't the case for me. But it's very interesting how referred pain can be so confusing!
acalzycalzy 6y ago
What worked?

wycy 6y ago

That sounds horrific. Did you ever find out what the cause was?

autarch 6y ago
See my other comment here - https://news.ycombinator.com/item?id=24948175 https://news.ycombinator.com/item?id=24948175 The only thing that made sense was that an initial infection triggered idiopathic pain long after the infection was gone.

post_break 6y ago

You're describing exactly what I went through! Two rounds of antibiotics, pain meds. Finally gabapentin was the only thing that worked and now I'm slowly weening myself off of it. It's been hell. I had to sleep on the couch elevated. I could barely walk. Everything looked fine down there physically, two ultrasounds, MRI, nothing looked odd. I'm really hoping it never comes back because it was like either someone was squeezing it off and on or someone replaced the boys with pine cones. The pain was just so bad I wanted to get rid of them. Thank god for the lock down because I was working from home during this. I probably would have lost my job or something had I had to go to the office.

autarch 6y ago
Yeah, I did consider some surgeries like an epidydymectomy (the doctors though that was where my pain was coming from). Fortunately it did slowly resolve itself and I didn't have to do that. I hope your pain resolves itself soon. It just sucks so much to have to deal with this.

autarch 6y ago

Self reply to add an addendum ... I almost forgot the follow up. I've also experienced weird GI pain with no cause and reflux without any indication of reflux (throat looks fine, swallowing is fine, etc.). For the GI pain, my GP prescribed a relatively low dose (20mg) of Amitrypyline, which is an old anti-depressant. Later, the GI specialist I saw recommended I double this to 40mg. Apparently it's good in treating idiopathic pain like mine, and I it may have helped me. It's really hard to say because a lot of my pain issues have occurred on and off over long periods of time. So maybe the improvement is just a natural resolution of some underlying issue, or maybe it's the medication. The theoretical mechanism of the drug is that when taken before bed it helps you sleep more deeply, and during good quality sleep your body is better able to repair itself. Absent any reason not to, I'll just keep taking it.

sebmellen 6y ago

It feels very strange to put out there that I've had the same issue, but it seems to be very common, and yet is rarely spoken about. I had the same path as you — infection, antibiotics (through an IV), and then a few weeks later the pain sort of disappeared! Now and then I wake up with the same pain, maybe twice a month, and it lasts for 1-3 days. But otherwise it's mysteriously disappeared. (I feared it may have been torsion/Bell Clapper Deformity or something like that.) I think you may find this article interesting: https://www.health.harvard.edu/blog/finding-help-for-pelvic-pain-a-patients-story-20090203212 https://www.health.harvard.edu/blog/finding-help-for-pelvic-.... There is another article I found where two doctors noted that men in high-performing careers (ostensibly with a lot of stressors) often complained of chronic testicular pain. They had developed this sort of massaging device [...] which worked remarkably well for their patients, some of whom had even had testicles removed because of the pain, but oddly I can't find it now.

autarch 6y ago
I never had any pain or difficulty urinating when I had the pain symptoms. But what the article describes is interesting. If my pain comes back (fingers crossed it never does) I'll try to keep this possibility in mind.