New - Pudendal Neuralgia - Struggling
Posted: Thu Feb 23, 2012 8:47 pm
Nice to meet you all--I'm glad this site exists.
Here's my story. Questions are in bold.
For over a year now I've been dealing with pain in my penis that has increased in intensity and frequency since it started. It's now affecting my balls. I went down every hall in the maze of the medical system and found a dead end every time. A couple of weeks ago, after a year of no answers, the urologist finally stuck a camera in my dick and guess what, no answers. For pain, they squirted into my urethra some KY jelly with a little analgesic mixed in. You can’t imagine. He couldn’t get past the pudendal area to look deeper inside, I hurt terribly and could not consciously unclench the pudendal area. He handed me a script with an indication of “pudendal neuropathy.” I’ve been reading what there is to know on this website and others. Outcome looks dismal. He also gave me a script for Peridium, which I didn’t fill—Peridium never helped my pain before so I had no reason to believe it would be a match for cystoscopy pain. Also I’m afraid of taking the pain away because then I won’t know if the condition is worsening.
I should mention I’ve always had a great amount of control over my muscles down there and flexed them for my pleasure in different situations. Many, many, many times I used it to stop my orgasm while it was happening in order to edge. I also have a lifetime habit of putting pressure on the balls and perineum while masturbating. These seem like possible causes, so I’ve stopped these practices.
I also have TMJ and unconsciously clench my jaw, constantly, and now I think I’m clenching the down there muscles in the same way—I’ve read about myofascial pain linked to PN/PNE. I keep trying consciously to relax the muscles but it’s hard, and sometimes I can’t tell the difference between relaxing and straining. I see a lot online about physical therapy for pudendal neuralgia but can never locate a specific exercise. Can anyone link me?
The pain is in the underside of the penis running up the urethra, particularly in the frenulum delta, and also the pain is in the glans, and now sometimes in the sac or in either ball. Pain gets worse as the day goes on. I often wake up quite all right. Of course any sexual usage by myself or with others exacerbates the state. I’m doing my best to be abstinent. What are other folks’ experiences with sex and abstinence?
I keep trying to find a support garment but have seen many posts here about going commando. Having my junk looser, like in boxers, actually has made things worse for me. I got to the point where I had to switch to briefs. Is anyone using something for support? An adult diaper pad or something? How about this?: http://www.idiaper.com/Extra-Absorbency ... 20143.html
I just started doing Yoga at New Years. I thought it was helping but read more and now it is suggested that yoga is working my pelvic floor in counter-productive Kegel-type ways?
Are there any helpful postures for sitting at a desk or in the car?
I got a rubber donut from Rite Aid: no friggen help. What are some good cushion solutions?
Does anyone have experience getting an accommodation from their work’s HR? I heard about people getting standing work stations, but can’t imagine answering everyone who walks by and asks “Why are you standing?”
Does anyone have an idea of what I can expect on the first visit to a neurologist with this story? I still have another 3 weeks' wait for the appointment.
Emotionally I'm wrecked and am in therapy twice a week now, because I broke down after the cystoscopy and needed crisis intervention.
Thanks for reading my story. I'd appreciate any answers to questions.
Here's my story. Questions are in bold.
For over a year now I've been dealing with pain in my penis that has increased in intensity and frequency since it started. It's now affecting my balls. I went down every hall in the maze of the medical system and found a dead end every time. A couple of weeks ago, after a year of no answers, the urologist finally stuck a camera in my dick and guess what, no answers. For pain, they squirted into my urethra some KY jelly with a little analgesic mixed in. You can’t imagine. He couldn’t get past the pudendal area to look deeper inside, I hurt terribly and could not consciously unclench the pudendal area. He handed me a script with an indication of “pudendal neuropathy.” I’ve been reading what there is to know on this website and others. Outcome looks dismal. He also gave me a script for Peridium, which I didn’t fill—Peridium never helped my pain before so I had no reason to believe it would be a match for cystoscopy pain. Also I’m afraid of taking the pain away because then I won’t know if the condition is worsening.
I should mention I’ve always had a great amount of control over my muscles down there and flexed them for my pleasure in different situations. Many, many, many times I used it to stop my orgasm while it was happening in order to edge. I also have a lifetime habit of putting pressure on the balls and perineum while masturbating. These seem like possible causes, so I’ve stopped these practices.
I also have TMJ and unconsciously clench my jaw, constantly, and now I think I’m clenching the down there muscles in the same way—I’ve read about myofascial pain linked to PN/PNE. I keep trying consciously to relax the muscles but it’s hard, and sometimes I can’t tell the difference between relaxing and straining. I see a lot online about physical therapy for pudendal neuralgia but can never locate a specific exercise. Can anyone link me?
The pain is in the underside of the penis running up the urethra, particularly in the frenulum delta, and also the pain is in the glans, and now sometimes in the sac or in either ball. Pain gets worse as the day goes on. I often wake up quite all right. Of course any sexual usage by myself or with others exacerbates the state. I’m doing my best to be abstinent. What are other folks’ experiences with sex and abstinence?
I keep trying to find a support garment but have seen many posts here about going commando. Having my junk looser, like in boxers, actually has made things worse for me. I got to the point where I had to switch to briefs. Is anyone using something for support? An adult diaper pad or something? How about this?: http://www.idiaper.com/Extra-Absorbency ... 20143.html
I just started doing Yoga at New Years. I thought it was helping but read more and now it is suggested that yoga is working my pelvic floor in counter-productive Kegel-type ways?
Are there any helpful postures for sitting at a desk or in the car?
I got a rubber donut from Rite Aid: no friggen help. What are some good cushion solutions?
Does anyone have experience getting an accommodation from their work’s HR? I heard about people getting standing work stations, but can’t imagine answering everyone who walks by and asks “Why are you standing?”
Does anyone have an idea of what I can expect on the first visit to a neurologist with this story? I still have another 3 weeks' wait for the appointment.
Emotionally I'm wrecked and am in therapy twice a week now, because I broke down after the cystoscopy and needed crisis intervention.
Thanks for reading my story. I'd appreciate any answers to questions.