Health Organization for Pudendal Education

I am currently being treated by a well-known doctor who deals with PN. I have two PTs as well. PT#1 told me "I checked the nerves and your pain isn't coming from the nerve. It's coming from the muscles the nerves run through (specifically obturator and levator)" PT#2 and my Dr said it's impossible to distinguish muscle vs. nerve pain.

I have the waffle gel cushion which makes sitting so much easier. I get away with a LOT of sitting for someone with PN. Beyond the temporary numbing, nerve blocks don't seem to help.

I used to have IC and for a long time my bladder's capacity was 4 oz. Now it is 16 oz. I recovered very suddenly, and at the time, I was getting instillations from a nurse who was terrible at them and would force the catheter in very clumsily. My pelvic floor has been a mess since. The thing that helps most is Valium, but it's not a long term solution. My worst symptom besides the diffuse burning, tightness, and sensitivity is this DREADFUL feeling of splinters behind and to the side of my urethra. If it's both sides, it's a very sharp pinch. It only happens when my bladder is 4+oz full and I move. It makes me want to cry. My Dr. tried to find a trigger point in the area to needle it, but couldn't. I have tight muscles and a big stringlike trigger point in the levator ani. I also have a couple smaller TPs. I have urinary hesitancy and a little pain with sex but it's still enjoyable.

PLEASE anyone, what could this be? I can live with the other symptoms, not comfortably, but this is the thing that sends me into tears. PT#1 reproduces the pain by playing with the guitar string on the right side. Things are temporary NOT pinchy after PT#2 works on me. No one can give me a definite answer. I think it's trigger points because I have had one worked away and it was VERY painful like this.

PLEASE let me know if you have/had the same thing and if so WHAT DO I DO. Could the pinch literally be the pudendal nerve being pinched????

Monday I am supposed to get botox in the coccygeus and trigger point injections and pudendal nerve blocks. I am not scared at all of the procedure. Im just scared they're missing something and it won't help the pinch.

Please help PN community.

Hi Rainbow,

Just speaking from the experience of someone who has had pudendal neuralgia and PT. I think it is a bit difficult to determine whether it's the nerve or the muscles on either side of the nerve that is the problem. The difference for me was that when the nerve was pressed on before it was released via PNE surgery, I would get a dreadful flare-up afterward with increased burning and feeling like I had been hit with a baseball bat from having pelvic floor PT. Myofascial release of the pelvic floor muscles caused a bad flare-up.

After surgery, once the nerve was released and had calmed down, I did not get a flare-up from having myofascial release of the muscles but rather it brought relief of the pain. To me, this sort of confirms one of the theories floating around out there that if it's primarily your muscles that are the culprit, you are going to get relief from myofascial release of the pelvic floor. If it's the nerve that's inflamed, then myofascial release of the pelvic floor is more likely to give you a flare-up.

However, I do feel that if you have an entrapment at the ischial spine or Alcock's canal, that it will be painful in that area when pressed on. You can read about this in the Nantes article. http://www.pudendalhope.info/sites/defa ... iteria.pdf
But Dr. Robert says that there are other structures nearby so the tenderness can be difficult to interpret and people without symptoms can have tenderness there. If it's unilateral, it is more suggestive of an entrapment.

Sorry, I'm not sure what to say about the sharp splinter feeling. Dr. Robert lists stabbing pain as one of the symptoms of PNE. Pinching is one of the symptoms listed on our website but I can't remember the source/article from where that was taken.

Violet

Thank you, Violet. That's a helpful document. I guess I'm just going to have to continue with my treatment and see where it goes.