Health Organization for Pudendal Education

Hi, I've only been having symptoms for two years now but the level of severity and debilitation which came with them has been unfathomable. I was trying my best to do some type of PT despite the dysfunction but COVID severely set me back and I haven't been able to go to the pool since March. I was g...

GMatch, I saw a couple of your posts. I just wanted to say that you may want to consider the possibility of spine involvement in your daughter's case. My sacrum, SI joints, hips and ilium bones are also all severely twisted. Part of my pain was brought on after an appendectomy surgery so abdominal a...

Hi Mdelu, I'm so sorry to hear your son is going through all that. Have he and you been able to find a comprehensive pain management doctor or palliative care? I'm two years in without a diagnosis but after researching because no doctor can tell me what's wrong, I believe it's very likely I have con...

Just wanted to make a post about the connections between anorectal birth defects and tethered spinal cord for anyone who it may help. There's a study titled "The tethered spinal cord in patients with anorectal malformations" published by the Journal of Pediatric Surgery Vol. 32 Iss. 3 Mar....

Stephanie, Thanks so much for all this information. I don't know exactly what's going on but I read a couple articles about tethered spinal cord. The condition sounds at least very similar to my symptoms and what I'm experiencing and could maybe a lead to a more accurate diagnosis. I've also noticed...

Hi, I recently had an MRI at a hospital here in my home state. I asked them to use the Potter protocol and brought all the paperwork with me but the radiologist told me that what they use is very similar to the Potter protocol. I guess she talked to Dr. Potter on the phone that morning. So although ...

saint, Of course, compassion and a listening ear are greatly needed with these types of conditions and not always readily available in the outside world. I'm glad to hear that you were able to find a more helpful pain specialist with the insurance switch. That's very true, if there's one lesson I've...

Hi Stephanie, That's true, thanks for your input. That makes sense that because surgeons like Hibner, Conway, and Possover are familiar with related diagnoses, it could still be helpful to consult with one or more of them. (Although I've just seen the posts about his departure from his former practi...

Hi everyone, My second EMG / NCS shows evidence of chronic left lumbosacral plexopathy and possible right lumbosacral plexopathy or L4-S1 polyneuropathy. It seems to me that my issues would definitely be beyond just pudendal neuralgia. I also have bilateral SI joint dysfunction. The left SI joint is...

Hi everyone, Question about insurance for you all. My current insurance doesn't cover out of state providers at all. I also don't currently have claims, copays, etc. so I'm not familiar with how all of those processes would work. Right now, I'm trying to find a women's health PT and practitioners in...