Pudendal guy in California

[Lernica]

Alan,

Have you considered a possible hip injury? Have you ever had your hip(s) imaged (MRI or x-ray)? I think that many of my pelvic pain problems are related to an undiagnosed hip injury about ten years ago. (Yes I may begin to sound like a broken record since I offered the same advice to DoubleEdgedSword.) But the fact that your pain is related to movement in your hip (sitting to standing; walking) suggests that you may have some hip pathology. My hip pain also often refers into the SI joint. This is called "posterior" hip pain.

Good luck in figuring out the cause of your pain.

[Violet M]

Had a pudendal nerve test and it reported negative to pudendal neuropathy even though I have similar(not all) characteristics of pudendal nerve damage.

Alan, was it the pudendal nerve motor latency test (PNMLT) that you had? Some docs do not feel it is of much value in the diagnosis pudendal neuralgia because it measures the motor function of the nerve but not the state of the sensory fibers.

If your pain is just above your tailbone I wonder if you have some ligament strain from all of the lifting during landscaping.

[Alan]

Yes, I do have problems with my right hip, feel off balance when first get out of bed in the morning. I also felt a weird sensation while landscaping, as if my right buttock fell downward. The test that was given in L.A. was one with electrical currents that shocked the nerves in the rectum area. Brought tears to my eyes...and not of joy. I spoke with doctor Dellen's wife from Baltimore-as she is the one who schedules appointments. He is flying to Vegas in June, so I made an appointment to see him, to see what he thinks. I have all of the characteristics of pudendal nerve damage except that I can sit nearly all the time without any pain. Very weird... So, the hip being out of alignment could be a possiblility. I was thinking about that, too. My PT doesn't understand what is going on, but is willing to learn and put more time in with me. He also told me that he would send me out of network if Kaiser can't help me. Right now it's 11:15 A.M. in California and have a slight pain in rectum and in the genital region, but need no med's at this time. However, it's amazing how quickly the pain can shoot up to a ten! Yikes!

[Redz]

Hi Alen.
Have you thought about trying a pelvic adjustment. I had an adjustment with a DR Puleggi in Collinswood,NJ. Oh Boy. Not a pleasant experience. I tried it after reading that it may contribute to pain in the whole pelvic region. It has helped with my PN pain since it has relaxed all my muscles in the pelvis. It works!!!

[Alan]

Yes, I will tell my PT this on Monday. Flares HURT! as we all know...I spoke to Dr. Dellon's wife a few days ago. Interestingly, she said that the medical textbooks have the Pudendal nerve route 'wrong' and that every person's nerve route varies a little. If I'm not better in the next few months I am planning on driving to Vegas and meet with Dr. Dellon. He is not cheap though. A consultation is over $700. But, I am also seeing a pelvic floor specialist at Kaiser the first week of June. I will share anything that I find out that can help all of us.

[Alan]

Went to physical therapy, now flared up from tailbone to tip of penis. Bowel movements bring on the PN pain. I spoke to Dr. Dellon's wife. She said that alot of new information about the pudendal nerve has been discovered in just the past two years. According to her, most text books are wrong about where it runs through in the pelvis. Not a medical expert, but am interested in finding out what she is talking about. Has anyone else had major flare ups with bowel movements or do I have something else going on? I am not constipated, don't have to push...just severe burning pain about 45 min. after that, which can last the rest of the day. I feel spasms of pain from stomach throughout intestines to left side of rectum. Really hurts! From what I have read there are many types of nerves by the rectum and they can cross talk.