Health Organization for Pudendal Education

harry_nerve wrote: ↑Sat Feb 10, 2024 4:12 am Be very careful with these so called physical therapists. They milked me of thousands!
I had bad compression and they made matters worse and happily took my money.

You should know within 6-12 PT visits if it's helping. If PT is making you worse, I don't think it makes sense to continue it.

Violet

harry_nerve wrote: ↑Thu Feb 15, 2024 11:21 am Through MRN imaging and alot of the typical symptoms like sitting pain, bladder urge etc

Hi
Sorry for all the questions,but what level of pain was you in out of 10 and when you say sitting pain,we're you in alot of pain and unable to sit??

All I really have if I'm honest is an irritation sometimes sore feeling in the tip of my penis I wouldn't call it a pain but its just uncomfortable being in that area,and that feels makes me want to urinate more.

Thanks Matt

Yeah the sitting pain kicked in usually within 20 minutes. Worse on left side I had more compression on left.
MRI scan of the nerve through specialist would be valuable, it can identify ligament compression. Mine did!

harry_nerve wrote: ↑Tue Feb 20, 2024 3:02 pm Yeah the sitting pain kicked in usually within 20 minutes. Worse on left side I had more compression on left.
MRI scan of the nerve through specialist would be valuable, it can identify ligament compression. Mine did!

What caused your compression if you don't mind me asking? And was sitting pain the only pain you had ?
Have you had surgery? If so are you better?

I had to diagnose myself also, thanks to this forum!

When I asked my former Urologist (I moved) if it could be my pudendal nerve, he just told me I was "in the right area."

All he offered was orchiectomy, which didn't help at all.

Inability to sleep would exclude one from fulfilling the Nantes Criteria. My only saving grace is that when my pain gets really bad, I can escape by going to sleep. I usually wake up feeling better, but often have had to go to sleep in the afternoon and sleep all night for that to happen.

jon wrote: ↑Sun Apr 28, 2024 10:00 pm Inability to sleep would exclude one from fulfilling the Nantes Criteria.

That is the one criteria that I'm not sure I agree with because I had a lot of trouble sleeping and I think the symptoms did wake me up at night. Yet, based on the success of my surgery I'm pretty sure I had a nerve entrapment. Oh well, who knows?

Violet

It's actually an intriguing symptom.

Stress makes my pain worse. So does constipation.

If relaxing, as in sleeping, decreases pain, and so does not feeling stresses, it seems to me like that should be a huge clue as to what's going on.

Obviously, when awake, your pelvic floor is tightened. Not sure about the piriformis, sacrotuberous and sacrospinus ligaments. But even just laying down, which is mostly what I have to do, I still have significant pain.

It doesn't feel like I'm tightening up, but the body has many autonomic reflexes that were not aware of, that it's hard to know.

I did just find this place.

https://www.innovativetherapycanada.com ... europathy/

Violet,

Not all pudendal neuralgia is nerve entrapment. Nerve entrapment can be constant (with pain which does not go away with lying down and sleep) or only exertion of pressure or traction on the nerve with certain postures, movements or pressure against the perineum. The NANTES criteria have their limitations and there is discussion to revise them. It is the current diagnostic criteria though.

I completely agree with everything you said, adelphos2. Do you know what revisions are being considered in the Nantes criteria?

Violet

Hi Violet
I've not spoken with you for a while but want to ask a question,I'm still plowing through the medical profession to try and find why I'm having all these problems.
When we spoke a while ago you mentioned that you had regular bathroom visits caused by PN,if you doing mind me asking but how often were you going and was you going alot during the night also did you feel a constant urge to want to go ?
Hope you're well,thanks Matthew Roots