Hi. I have been suffering with the following symptoms for nearly two years: burning and building pressure, particularly behind the penis and in the perineum, but also inside the urethra - at the base of the penis, underneath, and in the anus. 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 and in the perineum, 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.
I take 2 x 300mg Pregabalin a day.
I wonder if anyone suffers from similar symptoms and if so, if you have any tips, recommendations or success stories.
Thank you.
Henry.
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Henry1858
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Hi Henry, it sounds to me like this might be connected with the pudendal nerve. Have you come across the pudendalhope website? If not, it might be worth a look. Although I'm female so some obvious differences in places of pain / sensation, your description does sound similar to how my problem started. I was eventually diagnosed with pudendal neuralgia. I have gained some improvement via a specialist pelvic floor physiotherapist. Good luck.
Hi Henry, I have very similar symtoms and it's been two years for me too. Sounds like to me it's Pundendal Neuralgia. Have you seen a pelvic floor physical therapist? Do you have pain when you push on your abdominal? What triggered your symtoms?
Thank you for your replies. It helps a lot to know there are others out there with these bizarre and awful symptoms.
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 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 really helped me.
I am now working on the assumption that my pelvic muscles are too tight or that scar tissue created by my surgeries irritates the nerve. I know that muscles tense automatically as a response to pain and stress. I have also had UTIs, which can cause neuralgia. I read also that sitting and sex make the bulbospongiosis and levator muscles contract strongly.
Hi Henry, I am a woman but many of your symptoms are similar to mine. I have Pudendal Neuralgia/Pudendal Nerve Entrapment or a Pudendal Stretch injury. I have had it for 1 year 10 months. I am so sorry for you. Go to Pudendalhope.org and find a doctor and physiotherapist off that site. Don't wait. Get help now and don't sit down, bend, or squat. Read that site completely
Please can you tell me if you found out what was causing this I have had this exactly as you have written here and I am worried sick. Prostate has been checked etc back scan all day ok but I still have this really getting me down, when I should be enjoying life HELP
Hi Henry! Maybe see a physician/Endocrinologist? Ive had problems for years.. golf ball feeling in anus (like pressure) numbness skin changes etc eventually saw a endo/physician and he diagnosed me with Neuropathy.. the brain sending abnormal signals to the genitals through the spine can cause a whole array of strange symptoms.. yours might not be like mine but i was given dulotoxene, lyrica and cialis and been told to stay on them for 6 months to a year. its been just over a month and im already feeling improvements.. just some suggestions as urologists or docs were not able to help me... maybe try find someone who is a physician/endo as all my endo results came back fine.
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