Hi everyone.
I’m starting this thread because nothing has been concretely diagnosed yet, and I suspect there are other men out there in this same limbo—feeling almost suicidal because the symptoms are so debilitating.
Here’s the situation: a few years ago, I started experiencing intense burning sensations "down there." It would happen if I drank a lot of fluids, after ejaculation, or after a bowel movement. The pain was so severe at times that I felt faint. I went to a urologist at a local hospital. First, they checked my prostate and concluded it was a normal size. However, urine and ejaculate cultures showed the following:
A bacterium called HAEMOPHILUS INFLUENZAE (from a urethral swab back in 2009). Both my urine and ejaculate were positive. My urologist prescribed an antibiotic (Sinersul) but insisted he didn't see any actual issues. I finished the course, but the problem persisted.
After that, I saw a private specialist. He performed ultrasounds on my prostate and bladder and measured my Urinflow. His diagnosis was that my prostate had significant white spots, which he said indicated long-term inflammation. My Urinflow was a disaster—the stream was weak, and I had high residual urine in my bladder after voiding. After a prostate massage, he took another culture, and they isolated the same bacteria mentioned earlier, though this time it was identified as PARAINFLUENZAE, then later as INFLUENZAE. For the first instance, I took Sumamed, and the second time, Klavocin. I felt slightly better with the antibiotics, but I wasn't cured. Eventually, I stopped seeing that specialist, and my primary care physician began cycling through various antibiotics from the standard list. I spent about a year on different antibiotic courses (with breaks, of course). Throughout that time, I kept doing cultures and urine analyses, and the only thing that consistently showed up was ENTEROCOCCUS FAECALIS. My doctor told me the levels were minimal and that, normally, I wouldn't even need antibiotics, but since I had symptoms, she agreed I should take them.
My condition hasn't resolved. I have periods where I feel better and the symptoms subside, but it's always temporary. In September 2010, I went to see Fran Mihaljevic in Washington, D.C., where they ran a battery of tests: urine sediment, prostate massage followed by a culture, Chlamydia testing, ejaculate analysis, etc. Everything came back NEGATIVE. Even the doctor remarked that if there were actual prostatitis, these tests would have identified the specific bacteria, and noted that my prostate actually looks great, especially given its normal size.
Despite all that, the symptoms remain. I have flares that are absolutely crippling, alternating with better days. Alcohol doesn't help, and neither does keeping my feet or kidneys warm, but that's no excuse—this isn't a normal way to live. Even when I'm careful, the symptoms hit.
Since then, I've moved abroad and started facing new battles. The urologist here told me it likely isn't my prostate at all, arguing that if it were, the heavy antibiotic rounds would have cleared it. Urine analysis shows nothing. I’ve tested negative for Chlamydia, HIV, gonorrhea, herpes, and syphilis.
The last procedure I underwent was a cystoscopy. The urologist noted some slight redness in my urethra, but no scarring, and my bladder looked fine. His diagnosis was that everything seems okay, but he referred me to another hospital for more specialized testing.
The only metrics that were still poor were my Urinflow and the bladder ultrasound. I’m urinating 15 to 18 times a day, and I never feel like I’ve fully emptied my bladder.
Currently, I am waiting for a urodynamic study where they will fill my bladder with fluid to monitor my urge to void and other mechanics.
What really haunts me is the fear that they won't find anything there either. Most often, the symptoms trigger when I have a major bowel movement; it's become so bad that I constantly have to practice warm water enemas just to stay functional. Also, after sex, the burning is frequent and so intense that I occasionally hover on the edge of passing out.
Has anyone dealt with something similar? I want to hear all perspectives and diagnoses, but please keep in mind the tests I've already passed. It feels like the urinary tract is a massive enigma to doctors, and many seem clueless. This level of pain isn't normal, and it's destroying my quality of life. If I can't get this resolved, I honestly don't know how much longer I can endure it.
I’m starting this thread because nothing has been concretely diagnosed yet, and I suspect there are other men out there in this same limbo—feeling almost suicidal because the symptoms are so debilitating.
Here’s the situation: a few years ago, I started experiencing intense burning sensations "down there." It would happen if I drank a lot of fluids, after ejaculation, or after a bowel movement. The pain was so severe at times that I felt faint. I went to a urologist at a local hospital. First, they checked my prostate and concluded it was a normal size. However, urine and ejaculate cultures showed the following:
A bacterium called HAEMOPHILUS INFLUENZAE (from a urethral swab back in 2009). Both my urine and ejaculate were positive. My urologist prescribed an antibiotic (Sinersul) but insisted he didn't see any actual issues. I finished the course, but the problem persisted.
After that, I saw a private specialist. He performed ultrasounds on my prostate and bladder and measured my Urinflow. His diagnosis was that my prostate had significant white spots, which he said indicated long-term inflammation. My Urinflow was a disaster—the stream was weak, and I had high residual urine in my bladder after voiding. After a prostate massage, he took another culture, and they isolated the same bacteria mentioned earlier, though this time it was identified as PARAINFLUENZAE, then later as INFLUENZAE. For the first instance, I took Sumamed, and the second time, Klavocin. I felt slightly better with the antibiotics, but I wasn't cured. Eventually, I stopped seeing that specialist, and my primary care physician began cycling through various antibiotics from the standard list. I spent about a year on different antibiotic courses (with breaks, of course). Throughout that time, I kept doing cultures and urine analyses, and the only thing that consistently showed up was ENTEROCOCCUS FAECALIS. My doctor told me the levels were minimal and that, normally, I wouldn't even need antibiotics, but since I had symptoms, she agreed I should take them.
My condition hasn't resolved. I have periods where I feel better and the symptoms subside, but it's always temporary. In September 2010, I went to see Fran Mihaljevic in Washington, D.C., where they ran a battery of tests: urine sediment, prostate massage followed by a culture, Chlamydia testing, ejaculate analysis, etc. Everything came back NEGATIVE. Even the doctor remarked that if there were actual prostatitis, these tests would have identified the specific bacteria, and noted that my prostate actually looks great, especially given its normal size.
Despite all that, the symptoms remain. I have flares that are absolutely crippling, alternating with better days. Alcohol doesn't help, and neither does keeping my feet or kidneys warm, but that's no excuse—this isn't a normal way to live. Even when I'm careful, the symptoms hit.
Since then, I've moved abroad and started facing new battles. The urologist here told me it likely isn't my prostate at all, arguing that if it were, the heavy antibiotic rounds would have cleared it. Urine analysis shows nothing. I’ve tested negative for Chlamydia, HIV, gonorrhea, herpes, and syphilis.
The last procedure I underwent was a cystoscopy. The urologist noted some slight redness in my urethra, but no scarring, and my bladder looked fine. His diagnosis was that everything seems okay, but he referred me to another hospital for more specialized testing.
The only metrics that were still poor were my Urinflow and the bladder ultrasound. I’m urinating 15 to 18 times a day, and I never feel like I’ve fully emptied my bladder.
Currently, I am waiting for a urodynamic study where they will fill my bladder with fluid to monitor my urge to void and other mechanics.
What really haunts me is the fear that they won't find anything there either. Most often, the symptoms trigger when I have a major bowel movement; it's become so bad that I constantly have to practice warm water enemas just to stay functional. Also, after sex, the burning is frequent and so intense that I occasionally hover on the edge of passing out.
Has anyone dealt with something similar? I want to hear all perspectives and diagnoses, but please keep in mind the tests I've already passed. It feels like the urinary tract is a massive enigma to doctors, and many seem clueless. This level of pain isn't normal, and it's destroying my quality of life. If I can't get this resolved, I honestly don't know how much longer I can endure it.