Health Organization for Pudendal Education

I was diagnosed with PNE by Dr. Antolak in 2006 and have been doing self care very consistently for five years. My primary symptom now besides erectile dysfunction is rectal numbness. I also have peyronnes which can cause erectile dysfunction so i cannot be sure if the ED is due to PNE or peyronnes. Does anyone know if the rectal numbness identifies where the entrapment is?

Hi Pompei,
Are you still under the care of Dr. Antolak? What is Peyronnes?
Usually, rectal numbness is caused by the inferior rectal branch of the PN. Is this consistent with Dr. Antolak has advised you?
Kind regards,
Karyn

Hello,

Sorry to hear that you have both symptoms going on. There are some medical devices to help with the peyronies. I wonder what Dr. Antolak would think about using the device to help with the curvature and if he thinks it could damage the PN, or have no affect on the PN at all.

Have you had any testing or MRI's of you back? Just wondering if you had any testing done, to see why you might have numbness in the rectal area. It definitely could be PN related, but I wonder if it would be worthwhile to check out your lower spine, to make sure everything is looking good there as well.

Take care,
Wendy

Karyn, I no longer see Dr. Antolak because the nerve blocks were ineffective and I chose not to have surgery. He is a nice man but when I looked at the surgical procedure it looked barbaric; he cuts through so much tissue to get at the nerve I did not think the risk was warranted since I am not in chronic pain. I have been practising self-care for five years now and I never sit. I have had improvement in my symptoms. i almost never have the foreign object feeling in the ano-rectal area anymore and my urological symptoms have also improved. I no longer have pain during sex and I do not need to get up to urinate in the middle of the night anymore.

Peyronne's is a curvature of the penis caused by scar tissue being formed on one side of the penile shaft pulling it into a curve. Its cause is not well understood although it may be caused by minor penile trauma during intercourse.

Wendy, I did get an MRI because I developed numbness in my fourth toe on both feet and had fasciculations in both calves and feet. I went to a neurologist who did many tests which included an MRI of the spine. She found no neurological pathology and told me not to be concerned about the numbness in the toes unless it spread to my ankles. It has not spread and it has been a couple of years. She did say there was some minor abnormalities in the spine, she may have said osteoarthritis, i don't remember because it has been a long time. she also said it was not unusual for my age. I am 63 now. I do think I will see another neurologist and have them re-read the MrI since i was more concerned with ruling out any degenerative disease like MS rather than diagnose the PNE when i saw the neurologist.

While Karyn is correct about the branch of the nerve responsible for rectal numbness, you can't use that information to pinpoint area of entrapment because all it tells you is that there is obstruction to normal nerve conduction somewhere, anywhere, at or above that point. I had a lot of rectal numbness, and my pathology was tarlov cysts compressing the sacral nerve roots - definitely far from the rectal branch itself. I also had foot and leg pathology which started in the toes and travelled up over time, eventually causing neuropathy and weakness of the feet and legs in general. With pudendal plus foot / leg symptoms, tarlov cyst disease should be ruled out.
edit: since they are re-reading the MRI anyhow, ask specifically that they note any tarlov cysts in the sacrum. many radiologists will ignore them unless specifically instructed.

Hello,

I think it would be a good idea to have the MRI re read or to have another one done. It is good to see that there are no abnormalities with the MRI. I always like to see everyone rule out issues with the spine, before coming up with a PN diagnosis. It is definitely not a surgery someone would want to go through, unless it really is PN. There was a couple of people on the forum, that actually were diagnosed with PN, and then after surgery, were told that they did not have PN.

I am also glad to hear that you are doing self care, that seems to be working for you. If you are not in chronic pain, I believe that you are making the right decision, in not moving foward with any type of surgeries. It seems like what you are doing now, is making you able to stay functional, which is awesome!

Take care,
Wendy

HerMajesty wrote:While Karyn is correct about the branch of the nerve responsible for rectal numbness, you can't use that information to pinpoint area of entrapment because all it tells you is that there is obstruction to normal nerve conduction somewhere, anywhere, at or above that point.

Agreed, HM! If you're still considering an MRI, Pompei, please request that includes the sacral plexus.
Kind regards,
Karyn

Thank you very much for the replies. They are very informative and give me insight I did not have before posting.