Health Organization for Pudendal Education

kimc wrote: ↑Sun Jan 25, 2026 9:28 pm I cannot recommend anyone wasting their money on a 3T MRI of their pudendal nerve. In the supine position used for MRI, the Sacrospinous and Sacrotuberous ligament are not compressing the PN significantly. In patients with swollen or ossified SS/ST ligmants sit, those ligaments have a "scissor" motion that traps the PN between them. That is why the pain is so much worse with sitting! All one gets from the MR Neurography now is they don't see anything in that position, so therefore they perpetuate the myth that you do not have the nerve compression you clearly have.

Dr. Stanley Antolak's 2024 article clearly states that simple pin prick and touch ( which any patient can do on their own for free) in the PN nerve territory will reveal whether you have nerve compression or not. He recommends nerve block as a diagnostic test as second line at that time. MRI was not needed.

In terms of Physicians using state of the art Da Vinci Robot approach to PN decompression, I am aware of two. One in US and one in Turkey. There will be others as more Gyne and Urology specialists are getting familiar with the anatomy due to other operations they do with this device. Personally, I pursued this approach and am pleased with my outcome.

Dr Antolak Review - a true giant in PNE field who in USA defined the illness when no one had any interest
https://www.ncbi.nlm.nih.gov/books/NBK562246/

DaVinci Lap Approach - Tough place to get to to decompress. Dr Erdogru did my surgery and has by far the largest experience, but he is in Turkey
https://tibeterdogru.com/en/home/

Dr. Shakiba and his partner does Da Vinci and I believe is limited to operating on women. Has a nice video of the whole procedure as well. Here is a patient testimonial.
https://www.youtube.com/watch?v=3rU4BJGcqFc

Violet M wrote: ↑Sun Jan 25, 2026 7:29 am Thanks for the update.

Dr. Vayawahare's website still looks active. https://www.manchesterpain.uk/ Do you know if she is still seeing people?

Do you have a plan for what you will do yet?

Violet

eraser wrote: ↑Mon Jan 26, 2026 11:33 am Their biggest concern isn't that there isn't a definitive test and they are concerned about people who have had the surgery, and have ended up much worse. I think very soon, they will end up having to accept that it's the only way forward.
Peter

Violet M wrote: ↑Tue Jan 27, 2026 6:58 am

eraser wrote: ↑Mon Jan 26, 2026 11:33 am Their biggest concern isn't that there isn't a definitive test and they are concerned about people who have had the surgery, and have ended up much worse. I think very soon, they will end up having to accept that it's the only way forward.
Peter

Yes, there is always a risk of getting worse with surgery, although from reading patient reports on this forum for many years now, it is not typical for people to get worse. When you are already in a really bad state as I was before surgery, you get to the point where you are willing to take that risk. I know it's an agonizing decision. It's true there isn't a definitive test for whether you have an entrapment, but there are some criteria that can give you a pretty good idea as to whether you have an entrapment. https://www.pudendalhope.info/wp-conten ... iteria.pdf
These criteria aren't always 100% accurate but still worth considering since some or all of the essential criteria are typically present.

I agree with kimc that Dr. Antolak is a "true giant in PNE field" as he was the doctor who confirmed my diagnosis when there were few doctors in the US who even knew anything about PNE. I think he did the pinprick test on me but also recommended an MRI of the lumbosacral plexus in addition to the lumbosacral MRI I had already had, to rule out any obvious problems in those areas (such as a tumor or spinal radiculopathy) -- but not an MRI of the peripheral pudendal nerve, and not an MRI to determine if there was a pudendal nerve entrapment.

I wish you the best as you figure out what to do.

Violet

eraser wrote: ↑Wed Jan 28, 2026 8:44 pm Thanks Violet. I have had several mri's of lumbosacral plexus and I am already aware of the nantes criteria. I think my mind is made up as I have always been a believer in surgery and my symptoms are that bad. Convincing the nhs of this will be another matter mind!