HELP! For the last two years, I have been in a living hell with a certain condition that has baffled dozens of physicians. This is a multi-symptom condition...which includes:
1) A tight pulling, twisting sensation in my left groin.
2) A sharp, burning sensation at the tip of my penis UPON MOVEMENT (standing up or sitting down)
3) When my bladder starts to fill, it feels like my penis/ bladder is on fire. The burning gets worse, the longer I wait. After I urinate, the burning subsides.
4) Sexual dysfunction ( I haven't had an erection since this all started)
5) Burning, painful ejaculation
6) After I urinate, it always feels like I still have more to go. And I always can go a little bit more.
7) Whenever I pass gas, it feels like I'm also passing it through my penis, which triggers another burning sensation
8) Sometimes, when I start to get an erection, my penis goes into spasm. My penis also starts to burn.
9) Sometimes, when I get sexually aroused, instead of an erection, I ejaculate, witout any physical stimulation..
I know this all sounds bizarre, but the nightmare is very real for me. I have been to dozens of urologists. They have given me dozens of anti-biotics, none of which did any good. I've been on numerous anti-inflammatory, anti-spasm medications, but NOTHING seems to relieve ANY of my pain.
I have had numerous imaging tests. I've had CT scans AND MRI's of my pelvis, abdomen and spine. But every one of those tests were negative. I've also had two cystoscopies and a transrectal ultrasound. Again, nothing was found. Even physical therapy didn't do a thing.
The most bizarre thing about this is I'm only 30 years old. I'm in the prime of my life and I have a condition that nobody seems to know about.
However, two of the doctors I've seen suggested that I may have nerve damage. Is this possible? Could I have torn a muscle or nerve that could cause all this pain?
I believe it is possible. Because before all this started two years ago, I felt something being "torn" in my abdomen. Then I experienced a tremendous amount of gas pain. And then a week later, the symptoms began. And they have gotten worse. Is there a way of finding out if I have nerve damage in my groin or abdomen or penis? Are there any tests I haven't had? Or is there any medication you can think of that might be of help. PLEASE HELP ME! I DON'T KNOW WHERE TO TURN. THIS CONDITION IS VERY REAL...IT'S NOT IN MY HEAD. EVERYTHING ELSE IN MY LIFE IS FINE. I HAVE A GREAT JOB AND A GREAT FAMILY. WHY AM I SUFFERING LIKE THIS? IS THERE ANY HOPE FOR ME?
PLEASE SOMEBODY HELP! I'M ALL ALONE.
Although your symptomatology is somewhat unusual, it could well result from an involvement of nerves supplying the penis, bladder, and apparatus of ejaculation. These would include the lower spinal cord (conus), the sacral roots (S2-4) within the spinal canal, the sacral plexus in the pelvis, or the pudendal nerves. The symptoms may also potentially result from an affection of one of the nerves supplying the genitalia that courses along the abdominal wall (specially the genitofemoral nerve).
Besides evaluation by urologists, you also need a good clinical exmination by an astute neurologist with special expertise in neuromuscular disorders. Additional tests that you may potentially need include an EMG examination, urodynamic studies and sphincter EMG, a spinal tap, more elaborate imaging studies, and tests for viral or other infections.
I suggest that you request a consultation with a reputed neuromuscular specialist at an academic neurology department near you. In case you live near Cleveland, you may want to see Drs. Levin, Mitsumoto, or Shields at the Cleveland Clinic for an opinion. The number to call for appointments is (800)223-2273, or (216)444-5559 locally. Good luck!
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