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    Old 02-05-2015, 02:21 PM   #1
    ptrk2012's Avatar
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    Chronic Genital Pain - Long Post

    I am a caucasian, non smoking, smoke avoiding, 40 year old male. 5' 6" 175 pounds. I do not drink alcohol or take any other type of recreational drug. I would say I have been approximately 10 pounds overweight for the past 10 years or so. I sit at a desk all day (with poor posture most of the time), and admit that I am not as active as I should be. I do have a fairly decent diet.

    In January of 2012, after experiencing some lower back pain and having an MRI done, I discovered that I had a herniated disc at L3-4. The main focal points of the pain was the lower back, and left back hip (right behind the pocket). The pain would often radiate down my leg and across my groin. I dealt with it, waiting to see if if it would subside on it's own. I would visit a neurosurgeon every month or so, who would track my progress. She would offer microdiscectomy surgery, but never really push it. By mid August 2012 I could not take anymore and told my doctor that I wanted surgery. One of the stipulations is that she had to promise that I would be under anesthesia before they put in the catheter.

    Surgery occurred on September 14, 2012. The surgery went well I guess and after a few weeks the incision healed up nicely. The back and leg pain lingered for a while, but my doctor said this was normal and that it could take a year for nerve pain to subside, due to the damage. I had a catheter inserted for surgery, and I remember my first couple of urinations after surgery were painful and contained some blood. The nurse said that this was normal.

    Starting about a week after my surgery I started experiencing periodic pain in my genitals and some sexual dysfunction. It is a tingling type pain, that "flashes" unpredictably, primarily in the tip of my penis. It is like a tingle/burning type pain (almost a "wet" type of feeling). It seems to be worse when I am sitting, but is not consistent or predictable. I have often thought that that it feels like the same nerve or muscle that "fires" when your body reacts to something fearful, like standing on a ledge, or watching someone do something dangerous.

    In my post surgery follow-up appointments, I hesitated going into this much detail with my neurosurgeon. I guess I was a bit embarrassed by it (my doctor is female). I mentioned that I still had pain that radiated across my groin, but no more details were asked for or given. So in late February 2013, I went to my normal doctor and explained to him what was going on. He did not think that any damage was caused by the catheter (which had been my fear). He took a urine sample and had blood drawn. He said the urine looked fine in the tests that he ran, and i never really heard anything back on the blood. I did call and talk to his nurse, who said the blood tests looked normal. He referred me to a urologist.

    I visited the urologist in March 2013, who also took a urine sample. He was unaware at the time of the blood test I had done. He asked me a few questions about urination frequency and performed a quick physical exam of my penis and testicles. Basically, he told me that he found nothing urologically wrong with me, and then said that the issues were most likely caused by the nerve damage in my back and to talk to my neurologist at my next appointment (in April 2013). He offered a prostate exam, but said he did not think it was necessary as he saw no risk factors. I declined.

    When I went to my neurosurgeon appointment in April, I was happy to see my male physician's assistant was who came to greet me. After some of the regular update talk, I started to go into details with my genital pain. At that point, my regular surgeon came in, and left the door wide open, so I did not go into as much detail as I would have liked. I tried to make it clear where the pain was originating. She said that the nerves for the groin area go through the discs that are higher than where they operated and could see no reason for the pain. She went ahead and ordered another MRI, which I had done on May 20 2013. We did a lower back and pelvic, with and without contrast. I did not hear anything back from the office regarding the MRI results, so I went and got the transcribed results myself. I did not see anything on there alarming, so I waited for them to call and set up a follow up appointment. After a couple of weeks, I called, and was told that they were trying to get me in. By July 10 2013, I still had not heard anything, so I called again. One of the nurses talked to me and said that the Dr did not see anything that cause the pain. I was a little upset that I had to call them to get these answers. At this point I became so frustrated that I just decided to ride it out and live with it.

    I have noticed that in this time, the ease in which I can get an erection has decreased. This may just be a sign of getting older, but before my surgery, I could get an erection quite easily and it would be solid. My orgasms were usually pretty intense and the ejaculations seemed to have more "power" behind them. After orgasm, the erection would linger for a bit and gradually diminish. Now it seems that I have to work harder at getting an erection and it never really feels fully erect. In fact, for a while in the summer of 2013, it had become so bad that my Dr gave me some samples of Cialis. The semi erection would cause me to ejaculate early, sometimes immediately after penetration. After orgasm, my erection would immediately go away, many times before I had even withdrawn. The Cialis helped and I took them for a few months. My ejaculations were occasionally uncomfortable. I would hesitate to say "painful". They were not bad enough to prevent me from having intercourse.

    Occasionally I have experienced an urgency to urinate, but in general not. In most cases, this was after drinking a lot of water after not drinking much in prior days. For example, I drink more water at work than I do at home, so on Monday mornings I would notice this happening. I can't say I have ever had difficulty during urination per se. I cannot recall any straining to empty my bladder. Every once in a while I would think I was finished, and then a stream would start again. I would guess that this happened less than once per week. I rarely get up in the middle of the night to urinate. I have never seen any blood in my urine during this time. (And I have been paying close attention.) There have been some occasions of weak stream, but I don't know if it has been frequent enough to be alarming.

    While the erectile issues have, for the most part, subsided, I still feel that my sex drive has diminished and I just don't feel my penis "twitch" as much when I see something erotic that would have normally triggered an erection. Everything just does not feel like it used to. I have no idea if there is a correlation between surgery and my issues. Again, this could just be part of aging.

    In Oct/Nov 2014, I was seeing my Dr about a couple of other issues (sharp pain in my left calf, weird stomach grumbling) and mentioned that I was still dealing with the penis pain. He set an appointment with the same urologist again for Dec 8 2014 and then a follow up with him on January 25th. I went to the urologist on Dec 8. We talked about the pain and he did another quick exam. He asked a few questions and I tried to answer them. "No pain anywhere else?" "No problems urinating?" I gave a urine sample, and he said it showed no issues. I was going through a very stressful time at work and had a lot on my mind, so maybe I did not stress the issue enough. He did not do a rectal/prostate exam. He said he was not sure what he could do. So I left, thinking that I had done my due diligence by following up on the pain.
    Around Christmas time in 2014, I experienced several episodes of an overall ache in my testicles. Not really a sharp pain, but a dull ache...a heavy feeling. The sharp penis pain also intensified. I do not recall episodes like this until now. As far as I can recall, the pain was only in the tip of my penis. The pain expanded into a dull ache in overall groin area and pain in inner thigh, groin/pubic area. It seems like all of these new symptoms are made worse by sitting on hard surface. It also seems to intensify with stress levels.

    I did not want to wait until the 25th to talk to my Dr about this, so I called and made an appointment on Jan 7 2015. I explained to him what transpired in my appointment with urologist and what had happened since then. He did a physical exam of my testicles and noticed by my reaction that they were tender. He felt something unusual so he ordered a sonogram of my testicles, along with a blood test (including PSA), urine test, and x-ray. I had all of these done that day. Later in the day, I received a call from his nurse letting me know that they found some inflammation in my epididymis. I went back to the office the next day to discuss the other test results. The blood work came back clear, as did the urinalysis. He said that the only thing on the x-ray that concerned him was more degenerative disc damage than he would prefer to see on someone of my age. This was not new news to me. He diagnosed me with epididymitis and prescribed me some antibiotics. I was to follow up with him in two weeks.

    I finished the antibiotic and visited him in two weeks. Nothing much had changed as far as the pain/discomfort. He did another exam, and again I was VERY tender in the testicles. I also explained that I had pain all over in my groin/hips/torso. At this point he said that I should go back to the original urologist with the new symptoms, since I already had a history with him. He said he was going to describe my new issues to the urologist when he set up the appointment. On January 23rd, I received a call from my doctors office that said that they heard back from the urologist and he said that there was nothing that he could do for me. I was quite angry. The nurse told me that they could set up an appointment with another urologist and I agreed. The soonest I could get in would be March 3rd.

    Then, on January 30th, my doctor called me and told me that he had a long chat with the new urologist about my history and they both agreed that the next best option would be to send me to a specialist at The University of Kansas Hospital. My appointment is Feb 25th. It just seems so odd to me that my case is so baffling that they want to send me to a specialist already, before even running any extensive tests. Apparently this doctor specializes in pain like mine.

    My biggest fear of course is that I have some type of cancer. My father in law died in 2011 from bladder cancer that had spread into the surrounding tissue. So of course this is all I can think about, and I flinch every time one of my symptoms echo his.

    Currently my symptoms are:
    OLD - Occasional flashes of pain in the tip of my penis
    NEW - Tenderness in the base of my penis
    NEW - Tenderness in the testicles
    NEW - Just an overall "awareness" of my testicles that I really have not experienced before
    NEW - Pain/tenderness in my pubic area NEW - Pain/tenderness in the "crack" between my thigh and pubic area Pain in my lower back and sides and hips (not consistent pain) I have a bad back, so this is not unusual Occasional flashes of pain down my legs
    NEW I THINK - Sometimes, but not all the time, after I urinate, there is a lingering "burn" all the way through from my testicles to the tip of my penis...almost as if my urine were acidic or something
    NEW I THINK - A "tightness" or uncomfortable feeling in my perineum
    I don't know if it is at all related. but I have also been experiencing tingling in my feet, especially in the evening after work.

    I would think that it is possible that the pain in my back and sides could be due to tension, as I have been extremely stressed out about this situation, along with other things going on in my life.

    Can anyone here shed any light on what this might be? How worried should I be? What kind of tests is this specialist going to want to run?

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