New - Pudendal Neuralgia - Struggling

[mostimmemorialyear]

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.

[White Falcon]

Welcome Immemorial. Sorry you are now part of this unfortunate club! Too bad about your cystoscopy. I refused to have one done. I don't understand how they don't provide adequate pain relief during that procedure...

Anyhow, if you think tight muscles are involved, there are many experts who share your opinion.

I see a lot online about physical therapy for pudendal neuralgia but can never locate a specific exercise. Can anyone link me?

Check out Dr. Wise's book, A Headache in your Pelvis. The book includes some exercises as well as lots of info. He is in California. Here is a link to a site involving his treatment:
http://www.pelvicpainhelp.com/

There is also lots of discussion about physio and Wise on this website.

What are other folks’ experiences with sex and abstinence?

I haven't been able to have intercourse with my husband for 2-1/2 years due to my pain. With enough meds, I can briefly engage in oral sex or very careful fingers. I've learned to orgasm really fast! Don't know what the men in pain do....

Does anyone have experience getting an accommodation from their work’s HR?

Before I stopped working altogether, my employer bought me a kneeling chair when I gave them a doctor's note. The note simply stated that this patient requires a kneeling chair, no diagnosis given or required.

Hope this helps. That's all the questions I can handle for now! You can search this site for lots of info on cushions, etc. Books on managing chronic pain are helpful; even though they are not specific to genital pain, they have some good tips on relaxing, meditating, exercise, etc. Take care of yourself.

[mostimmemorialyear]

So helpful! Thank you!!

[janetm2]

Welcome and sorry things are not better but maybe with this site you can find some ways to improve. For the standing desk you can just say back pain is the issue that is what the managers use to explain my issues although it is Too Much Info I say pelvic nerve pain and nerve decompressiin surgery because people need to learn. Also the cushion would be harder to explain. Mine is homemade from gardening kneeling pads, velcro and a fleece fur top. The center is open based on distance between two books when I sit with my sit bones on the book edges to relieve pressure. I need to find the descrption on this for everyone now that dr marvel took it off his site. I also use the turgo airgo cushion for driving but it did not work for sitting at work. I have chronic foot pain so the standing desk was not an option. Fortunately I am slowly recovering from surgery and able to sit enough to work as long as I get up every 30-45 min for a stretch, even if just to pick up a printout at the end of our aisle. Noe for sex that is abstenince not sure how many years now but do not want any pain and hubby certainly does not want to give me pain. Could be those mafia movies looming as I am Sicilian with two older bigger brothers....
good luck sorting your way through to get less pain in your life.
Janet

[mostimmemorialyear]

Good stuff! thanks for writing.

[Violet M]

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?

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.

It's hard to link to a specific exercise -- each person is so different what's right for one person may not be for another. If your pelvic floor is overly tense you for sure don't want to do kegals. If you have a nerve entrapment stretching/bending could be a problem too. Check out the list of PT's in the left menu on the home page at www.pudendalhope.org.

Good luck with your neurology appt. My neurologist visit was a complete waste of time but if yours knows anything about PN it might be worthwhile. Just don't want you to get your hopes up too high like I did. My neurologist told me to see a psychiatrist and she said that neurologists don't treat "nerve problems". Really!

[mostimmemorialyear]

wow. that is so hard to hear about the neurologist. sounds like the first urologist i went to. but the current one is a great guy so i think his neurologist recommendation might work out. i contacted one of those PTs near me, she said there's an 8 week wait and they dont take insurance. ouch. scratch that off the list. the neurologist is a five week wait, im 2 weeks in on that. i actually asked my psychiatrist to call them and say this kid is losing it could you move that shit up please? thanks for writing its really helpful to hear more perspectives.

[Violet M]

i contacted one of those PTs near me, she said there's an 8 week wait and they dont take insurance. ouch. scratch that off the list.

Can you submit the claim to your insurance yourself? They may pay for at least part of it. Maybe check with your insurance company and see.

[mostimmemorialyear]

Yeah I can try. I setup an appointment, I need to at least see what it's like. Following-up on a couple of other options on Monday.

[mostimmemorialyear]

Sex question for the guys: are erections by themselves painful and or damaging to the condition? I can find stuff to do in bed that doesn't involve using my junk, but worried about exacerbating the condition just from being hard. My problem isn't painful enough that I CAN'T have sex--I can definitely play through the pain. But I'm very afraid of making matters worse.