I apologize in advance for the length of my story, but this problem has greatly affected my quality of life throughout my 20s. Here is my story:
I am currently a healthy 24-year-old male, and have not yet engaged in any sexual activity. On December 28th, 2005, I saw the movie "Munich" (by Stephen Speilberg) in the movie theatre. I had ordered an extra large fountain Sprite for the movie, and not even half an hour in, I had the urge to pee quite badly. I was right smack in the middle of the row, and the movie was so good that I didn't want to miss any of it, so I stupidly held my bladder until the end of the movie. The big problem is that I didn't know the movie was 2 1/2 hours long! After the 2-hour mark I was in excruciating discomfort, yet still waited for the movie to end. I have no idea what logic I was using at the time, because I was unable to fully enjoy the movie being in so much pain.
When the movie finally ended, I shuffle-stepped over the bathroom all hunched over, dying to relieve myself. I specifically remember when approaching the urinal to pee, to do so slowly, as I thought I may damage something if I eliminated too quickly. I emptied my bladder very slowly, and it took what seemed like minutes to empty completely. On the way home, I remember feeling a dull ache in my right testicle, as if a lead ball were stuck in it weighing it down. I was hoping it was just temporary discomfort from my stretched bladder.
A few hours after returning home, the pain was getting worse, and was not subsiding. When I woke up the next morning, the pain was still there. One week later, I was still experiencing pain, which was now radiating across my abdomen and thigh. I never had any problems with testicular pain before this bladder-holding episode, so I knew that something must have been damaged. I booked an appointment with my family doctor. Just listening to the symptoms, he diagnosed me as having epididymitis, and prescribed me "Arthrotec", a power anti-inflammatory.
After a few weeks of still being in pain, and being disappointed with only being given an anti-inflammatory for symptom control, I went to a drop-in clinic instead for a second opinion. I asked for some test results to be done to confirm diagnosis, so I was given a urine test, and a scrotal ultrasound, both which came back negative.
I was also given a referral to a urologist, who thought that the inflammation was caused chemically by a backflow or reflux of urine from holding my bladder. He said epididymitis was painfully common, and to continue bringing down the inflammation with anti-inflammatories. He said the problem could come and go for a while before eventually settling down.
Over the next few months, my right testicular pain would kind of come and go, and slowly subside on average. I would always have to wear loose pants, and ensure I'm not sitting in an awkward position or putting any pressure at all on my right testicle in any way.
Fast forward to present day, over 4 1/2 years later. I am still intermittently getting flareup episodes about once or twice a month that can last for a week at a time! I am unsure of the cause of this recurring inflammation. I thought sometimes it was due to pressure, or the way I was sitting, but often there is no reason or aggravation of any sort. I still have to wear very loose pants and underwear, and be mindful of how I'm sitting. I can't even wear jeans anymore, because they would often give me problems. It is very frustrating that I have never come to the bottom of this, and nobody can really give a good answer as to why the problem won't go away!
In January of this year, I had another ultrasound performed. During the ultrasound, I was on one of my "good" days where I had no problem, which was very frustrating. In fact, right before having it done, I deliberately poked around in the affected testicle and epididymis to try and aggravate it so at least something would come up on the test results. Unfortunately, this ultrasound also came back as normal.
In February, I visited the same urologist I had saw 4 years prior to see if he could offer any explanation. He said that it is common for pain and inflammation to reoccur with people that have had this "chemical epididymitis", because urine has irritated the coils and tubules of the epididymis and is not supposed to be present there. He also talked about "inflammatory mediators" which are responsible for these flareups. I forgot to ask what these mean and I'm still unsure. He said that often the pain will come back slowly, and not often suddenly, and that's the best time to attack it with more anti-inflammatories.
He also stated the fact that many people walk around with chronic testicular pain, and they don't understand why. He said that some have gotten their testicles removed, only to have the pain remain, or switch to the other testicle. Therefore he suggested that there could be a psychosomatic component to my problem. I'm completely open to this idea, but I'm just not so sure, because I can pinch the exact location of my horrible aching pain (which is right at the head of the epididymis). Also, my pain is not constant, I do get relief between flareup episodes. I'm more concerned about the etiology of these continuous flareups. The urologist does not think I'm getting infections, nor do I have a cyst or abscess. Unfortunately, I left the office without much hope.
When I have the dreadful ache, I find that I can't stop thinking about the pain. It is very distracting, and is often as painful as I remember it when it first occurred. It bothers me that the cause of these repeated flareups is unknown. I'm currently out of ideas and have no idea what to do or try next. The search for a cure continues..