Male Pudendal Neuralgia and Pelvic Floor Dysfunction

[sddipiet]

Hello everyone, I am a 25 year old male in the United States (Pennsylvania) and I have had pelvic pain for 2 years and PN for 7 months. My pain started with testicular pain after sitting for a basketball game and then turned into chronic perineum pain. I was misdiagnosed for a year with prostatitis, but then my pain worsened and turned into penis pain and trouble urinating. I went back to the urologist and he said my prostate felt fine and that I most likely have a pelvic floor dysfunction and sent me to physical therapy. I was in PT for about 4 weeks and she said I had a ton of internal trigger points, but then for some reason something triggered a reaction in my body. I woke up one day with sitbone pain and tailbone pain and it never went away. I then was diagnosed with PN as well. I have now been in PT for about 6 months, had 3 tailbone injections, take compounded rectal valium, done acupuncture, and I see a therapist (mental) who specializes in Pelvic Pain. I have made a lot of progress muscular wise.... a lot less trigger points, however some spasming of my left bulbospongeosis and my puborectalis muscles. I use a special cushion from cushionyourassets.com/ to alleviate some of my discomfort, but I'm still suffering from serious nerve pain and cant sit. My PT and my therapist suggest that I find a doctor who does P Nerve blocks, but the only one relatively close to me they know of is totally out of pocket ($800 for the first session, $275 otherwise). Has anyone had success with these? I will make the investment, but I would love to get feed back from others. In the meantime, I'm working on breathing techniques and coping mechanisms to call down my nervous system. I also use a soft ice pack to ice the area when I do sit and I just ordered CBD oil in another attempt to call my nervous system down.

[trevormorgan]

Mine was only relieved with surgery. However we are all different. Physio did nothing for me.

Nerve block injections lasted 10 days and gave total relief

Surgery technique was developed by surgeon M Robert in Nantes in France. My surgery was with Mr Wong of Southmead Hospital Bristol, England using Robert's procedure. In UK this was paid by the NHS, as a vet I was able to get the funding.

This was 2 Years ago and relief has been considerable and pain is down more than 80%. I have found Mindfulness techniques very helpful. I anticipate continued improvement.

Arrange work to avoid too much sitting. I can sit now but avoid sitting for too long and use laptop standing at a lectern. I avoid any jarring exercise so I walk and swim but avoid jogging and the gym.

Work at what are the does and don'ts that work for you

The worst for me was that my joystick became a vicious painstick and that has now gone.

I had no relief from medication only unpleasant side effects, they may help you.

We're are all unique so be methodical and work out what works for you

Stay focused and stay strong.

[Ali_rivers in reply to trevormorgan]

Hi trevormorgan, can you please tell me what kind of surgery you had? Was it for nerve entrapment? If so, how was that experience? Thanks so much for any info you can give.

[trevormorgan in reply to Ali_rivers]

Entrapment.

Not an instant miracle but over two Yeats the improvement has reduced level on pain and the thing no longer dominates my life. I still avoid too much sitting which is not a bad thing as in my 70s its best to stay active

[Joolibee]

Hi, I think you are doing all the right things, but nerve pain can take a long time to heal, even when the trigger points have gone. Nerve blocks help for some, though they didn't help me much. I'm in UK so can't help regarding alternative providers. I agree with trevormorgan that mindfulness techniques can help, or anything that helps you to keep anxiety levels at bay. Good luck with finding a less expensive nerve block, but if you're unsuccessful, just keeping up the good work will hopefully reduce the nerve pain over time.

[chillijava]

hi and welcome to the board, sorry you had to find us this way though.

in my experience, nerve blocks do not last long enough to help with the pain, but they are vital to get a good diagnosis.you need good pain relief to help you also,

check through the posts on this board and i am sure you will find others in the usa who have had treatment with either nerve blocks or surgery

andrea

[Ali_rivers]

I’ve been receiving CT guided nerve blocks for the past two years. They last anywhere from 6-8 weeks. But for me it was worth it as they eliminated all pain. Prior to that, I was in constant pain. I highly recommend doing them!

[anne77 in reply to Ali_rivers]

Would you private message me and tell me where you had these blocks done? Are you in the US?

[sddipiet in reply to Ali_rivers]

Did you have these done in the US?

[papaboo]

I have had similar symptoms in sitbone and tailbone area they can be confused withthe pudendal nerve pain at the same area the procedure like this one urmc.rochester.edu/medialib... the trick for me but the doctor was a little to aggressive and left me with another pain to deal with at the injection site. So yes I am happy the pain in the sitbone area is gone but now i am working on getting relief in my actual Butt. Still have Non relaxing puborectails muscle issues they are related and starting DCT PT hoping it will help.