My life with orchialgia or chronic testicular pain

From age 18, I had chronic testicular pain on the right side, intermittent and varying from a dull throb to something that was the worse pain of my life. I went to my GP multiple times and was always given antibiotics and Advil, then I was upgraded to a urologist who would do nothing before giving me antibiotics and sending me for an ultrasound. (The system in Ontario was very slow at the time and all imaging tests had to be done at hospitals) Had the ultrasound and then when back to the urologist (this took months) then was scheduled for a right scrotal exploratory, since nothing showed on the ultrasound, at which point they did an orchiopexy on the right. At my followup after surgery I was told I had a congenital structural abnormality and I should have a orchiopexy on the left just for safety. So I did that. Then about a year later the pain returned on the right side. Went back to the same urologist and this time other options where discussed like a nerve block, I wanted to know the reason for the pain (the structural abnormality I was diagnosed with causes intermittent torsion so that was why the orchiopexies where performed) This time the surgery was more extensive that the last time on the right, the incision was inguinal and large (from the base of the penis all the way to the belt line) painful recovery. A cyst was found and removed and again an orchiopexy on the right was done.

So that was a total of 3 surgeries over about 4 years. By the end I had nerve damage on the skin from the extensive incision (inguinal) which I still have to this day (nearly 15 years later) pain and a lack of sensation on the right side of my pelvis.

I traveled to Japan after university. I continued to have pain and treated them with the pain meds from Canada I had brought with me. All Japanese people have national health coverage or coverage through the company, I as a non-Japanese had neither thus was reluctant to go to a clinic or hospital for treatment. I had a bad attack my second year in Japan and because I had a previous back injury I got pain meds again without having to give many details.

My pain would almost cycle up and down during the years. I was able to use anti inflammatory pills most of the time to manage the pain. I had a major attack again after I was married and my wife was pregnant, we went to the hospital she worked at to see the urologist. At that time I was not forceful enough in my presentation of my case. I had ultrasound by the doctor at the same time as the exam but it again was inconclusive. I should have made my case more clearly but the doctors do not have time to listen much and if the tests are negative then it is the next patient.  

The end of the pain came because the pain reached beyond my ability to function and control it. I saw a urologist at the clinic my wife was working at, again I was given antibiotics for 2 weeks, then another 2 weeks after which point I was unable to function for the pain. I was unable to sit or stand and walking was next to impossible. I went back to the clinic and had an extensive physical exam by two doctors as well as ultrasound, I had to get an injection which just took the edge off the pain. I was then told I would need surgery the next day and I would probably be looking at an orchiectomy. I was sent home with more meds to inject, my wife could give them to me. The next day, at the hospital the urologist was initially wanting to send me home again with antibiotics (I was in too much pain to give a proper history of my pain.) I had to wait until my wife could come at lunch time to consult the urologist as well as having the letter from the clinic as well. I was given blood tests, an ultrasound that seemed to take forever as well as pelvic x-rays. I was in surgery later that day for what ended up being a simple right sided orchiectomy (scrotal with the cords still in the scrotum, I have since learnt that this is not the preferred method of orchiectomy for men with orchialiga as the cords may cause issue in the future). Pathology did not show a reason for my pain, the structural abnormality that I was diagnosed with in Canada had mysteriously disappeared or I never had it to begin with? There was a difference in the densities of the testes. So the surgeon (head of the department) wrote up my case as nerve damage caused by previous surgeries.

The moral of my story is that young men should seek second opinions and avoid surgery if possible. If surgery is inevitable seek a highly qualified surgeon and not one without extensive experience. Also one who is willing to explain and consider your thoughts on your condition.

As I write this I have intermittent pain now on the left side as well as pain on the right side from the remains of the cords which have been known to attach to other structures and cause pain. I have not brought that up with my wife yet. I am not interested in another orchiectomy so I am seeking other options.