Hello everyone. My post is rather long and cumbersome. Please bear with me.
I was born with a subcoronal hypospadias (the urinary opening was not in the proper location). When I was three, I had corrective surgery. I had a very happy, normal childhood.
The symptoms, which I shall describe below, first flared-up when I was twenty-one. I was eventually referred to a urologist, who diagnosed urethral stricture. He performed a metal dilation and rigid cystoscopy. Tight meatus was visible in the mid-glans with some palpable underlying fibrosis. For nine years, I dilated my urethra with a 16ch catheter, and by-and-large I was pain-free and happy.
The symptoms flared-up again when I was thirty-one. My new urologist recommended a Urethroplasty. This involves cutting-open the penis and using soft tissue from the inside of the mouth to widen the urethra. He carried-out the first stage of the operation in December 2014. I was catheterised for five days.
But the symptoms worsened. It was clear - to me at least - that the symptoms from which I had been suffering since 2004 were not connected directly to the narrowed urethra. In March 2015, the urologist suspected neuralgia and prescribed Amitriptyline. This did nothing for me. In April 2015, I saw a neurologist who sent me for a CT scan of my pelvis. This did not show anything abnormal. In July 2015, I went back into hospital for the second stage of the Urethroplasty. I was catheterised for two weeks.
I have got progressively worse since that operation. In April 2016, I saw a pain specialist anaesthetist, Dr. Shetty, at the Pain Clinic in London. In July 2016, he carried-out a Ganglion Impar Block. This exacerbated the symptoms. Over the course of the last year, I have tried Gabapentin and Pregabalin; neither of which have helped me.
So, what are my symptoms? Burning and building pressure, particularly behind the penis and in the perineum, but also inside the urethra - at the base of the penis, underneath. This is a twisting, nervy, pressure pain that builds in intensity. There is a raw, broken feeling - a high pitched sensation, like nails down a blackboard. It feels like a cold thumb hit by a hammer - a numb burning, throbbing sensation. There is increased sensitivity - to touch and to movement, and a hot liquid sensation inside the urethra - foreign body sensation. It feels like there is a ball of fire behind the penis, moving around. There is an itching and tickling sensation; spasms that shoot inside penis and back to anus.
Sometimes, there is a very odd feeing in my pelvic floor - like the bottom is falling out; like going down on a rollercoaster. This only really occurs when I am falling asleep in bed at night and in the dawn hours. Occasionally, I suffer cystitis-like symptoms - it burns, stings and hurts when urinating. After urinating, it feels like fireworks are going off in the urethra and perineum - burning, tingling and spasms. But momentarily, there is a sense of relief; a release of pressure. Going to the toilet also sets off the symptoms.
The symptoms are worst in the hour before I get-up in the morning, in the evening and after a long period of sitting-down: the attacks build in intensity - scratching and burning sensation, pressure and desperate to pee. It feels like hot liquid moving around inside the urethra.
This condition has taken an incredible emotional toll. I feel frustration, anger, denial, depression and anxiety. My depression centres around being convinced that the condition is incurable/untreatable no matter what I do. I feel trapped, hopeless, and full of despair. I feel like I am living my life through a fog. The condition prevents me from living my life fully. When the symptoms have dissipated and I forget about the condition, I remember it and feel crushing depression and hopelessness.
Thank you for taking the time to read this long and rambling post, especially for enduring the tired figurative language! It gives me comfort to know that there are others out there suffering like me, that I am not alone. If anyone has any advice or comments, I would greatly appreciate them. Thank you.