Going on 5 months now, I've had horrific symptoms which have included burning during and after urination; bladder and prostate pain/ache, pain at the tip, testicle pain, pubic bone pain, perineum pain , and a new right side varicocele, and post void dribbling.
I have been working with my doctor since December, and have had numerous blood and urine tests, and also a prostate massage, and PA test (by a urologist). I've had ALL the tests for STDs, some several times, all negative. I have had two ultrasounds on the testicles, and a CT scan of the abdomen and pelvis.
I was put on Doxycylcine for 21 days, and in the middle of that I was also on Zythromax for 10 days and didn't miss a dose. I was put on this by med center doctors before I had insurance in November, even though a couple urine tests came back negative of any infection. During the antibiotic course, the pain went away for the first 2 or three days, but then came back for the rest of the course.
NOTHING has turned up as a reason for my pain. My pain has been burning urination, and testicle ache and burn, tenderness. For a month or so around Jan. my pubic bone ached horribly. I no longer seem to have bladder or prostate pain so much now, however, I do still have testicle pain which started with the left side (which has had a varicocele since I was 24 (I'm 47)) but has moved to more of the right side along with a new small varicocele on that side that appeared suddenly one weekend in February - don't know why. And I also still have the intermittent burning urethra and pain after urination. There was a time for about 6 weeks, of the past couple of months where the pain would flare up about 3 minutes after urinating. Then later, it flared up about 10 minutes after urinating. This whole thing has seemed to subtly change over two week intervals. Slight changes in the epicenter of pains, and the nuances of the pain too. Just weird.
I have seen 3 urologists, and have been examined for the varicoceles (nothing to be alarmed about say the urologists). In November, I began a relationship with a woman who was carelessly too rough by pulling too hard on my scrotum twice during (protected) sex on two separate occasions. She stopped just before I was about to tell her to stop. So soon after that (back on November), I had developed pain in the left testicle which hurt for 3 months, and is only now diminished, but still aches with this whole thing sometimes too. It's been difficult because it's been hard to tell if the left testicle pain is a separate issue from physical injury, or if it's part of this whole pelvic pain thing.
Needless to say, I stopped seeing her shortly after this happened.
I've had several prostate exams, all say normal. I had a prostate massage and had prostate fluid tested, all came back negative of ANY bacteria and negative for ANY trace that infection is being fought there by trace of antibodies. I have not had a cystoscopy. Urologists apparently don't think it's bladder-based.
It is to the point now where my PCP, although admits he thinks the pain is real, believes most of it to be in my head. I've been seeing a psychologist a few times. His solution is mostly "deep breathing" for the anxiety attacks this has caused me.
I have done a ton of research on-line over the past 4.5 months, and although some people might think I have CPPS, or prostatitis, according to 3 urologists, and my PCP, I have none of those. NO ONE has diagonosed me yet.
I am extremely distraught and depressed, and my PCP, and a pain doctor have tried to get me on zoloft and then cymbalta, but they made me sick, so I stopped after just a couple doses. Also, I DO NOT want to be on these medications because they do not address the real issue here which is WHAT is causing my pain??
With all the research I've done, I feel about 85% sure that what I have is a postherpetic neuralgia (I've had HSV2 since I caught it from my ex when we were first married, and she was pregnant with our first and had her first outbreak. I was 25 then.). I could be wrong, but since I started taking 1000mg of L-Lysine a day about three weeks ago, the pain has shrunk down, but is still present, especially in my urethra (at times) and the testicles and behind the scrotum, even some weird ache in the front part of the anal area.
My PCP will not refer me to an infectious disease doctor, and I don't know why he won't, but he says "what do you think they're going to do if it is caused by a virus?"
At least I'd know.
I am extremely depressed now, and can't picture living like this for the rest of my life.
The pain/ache/burining ebbs and flows, it's always there but some areas will stay in the background for a while, and then flare back into life.
The burning urination only happens intermittently. Since all this started I now have post-void dribble, more than the occasional drop I used to have before this started.
I was a very fit, healthy 47 year old guy, with a good attitude, and I was relatively happy. Now, I feel about 80, and I have closed myself off from most of my friends. I can't go out because pain is so distracting.
I managed to obtain a good job that I started mid-March, but had to quit last week because the pain just drains me too much to be able to concentrate and learn the complex job details, and also, the attempt at cymbalta left me reeling last week (I'm off it now for 3 days after trying it for three days - I will NEVER try it again).
I'm posting this here because I'm running out of hope. If anyone knows of any weird viruses or diseases that this sounds like, let me know. Keep in mind I've been digging through the internet pretty much every day, so I feel pretty sure it's nothing bacterial.
And please let me know if there is ANY hope of getting back to normal again. I miss going running, and being able to do things without this horrible, dragging, draining, ache/pain. The intermittent burning urethra and urination are beyond old - I'm SICK of it. There have been times where I wonder if I'm getting better because I'll feel a LITTLE better. But I learned a while ago that it's just tricking me, and sure enough it comes back. I try to go for walks when there is a window where I feel up for it. But mostly I sit and lay around because it has a CFS aspect to it.
I am grateful for any input. I need help with how to overcome this. What kind of doctor should I be seeing?