kimc wrote: ↑Thu Jan 08, 2026 4:01 pm
I am a retired Internist and pain physician. My personal history of bilateral PNE following a Microwave Prostate Procedure in 2023 (age 50) follows along so many others who report their pain journey on this site. Because this condition does not show up even on MR Neurography, Nerve Conduction Tests, CT Scans etc, there has been inherent misunderstanding of PNE as a cause of severe chronic pain. Thanks to dedicated work from the now retired Stanley Antolak, there are clear objective clinical findings on the physical exam of ALL of these patients that have a true Pudendal nerve compression. That is simple touch and pin prick! All patients with significant PN compression will have an abnormal sensory exam of the PN. Specifically, Hypersensitivity, Dysthesia, and/or Allodynia (touch feels sharp/painful) in the distribution of the PN Branches is enough to make the diagnosis. A nerve block in Alcock's canal can be done to further confirm this, but is no longer necessary to confirm the dx.
Aside from giving patients some solace in knowing that their daily sitting, standing and often even lying down pain has a reason has a positive psychological impact Dr. Antolak's work has also has helped drive insurance companies to pay for attempts at Pudendal Nerve Decompression. Almost all nerve pain comes from nerve compression. It is to be expected that as the day goes on, the PN, trapped between S-T and S-S Ligaments will get ever escalating pain. That worsens as the day goes by, and is why most patients start out with minor pain in the am which becomes quite miserable until they can get onto their left or right side at bedtime.
Attempts have been made, primarily by plastic surgeons, some by Dr. Antolak, some by European surgeons to decompress the nerve by cutting and sometimes removing the S-S ligament and cutting the S-T ligament from an "external approach". Surgery has demonstrated these ligaments to be thickened, leathery and even ossified which trap, scissor or compress the nerve. That is why the patient cannot find a comfortable position. The initial external approach has been trans-perineal. This was followed by mainly plastic surgeons using a Transgluteal Approach. This requires cutting the gluteal muscle (s) and approach the ligaments that way. It is a painful approach but worth if if decompression achieved. These surgeries cumulatively report a reduction in pain at around 75% of the time. Generally a reduction, not full relief! Technically this is a difficult approach to get at the pathology in the ligaments and to clearly see what is the cause of pain. Worse, it makes it hard to get a wide enough surgical field to relieve all the compression points. This is further complicated by at least 13% of patients having anatomical variants in the PN distribution and this approach will make it hard to detect and relieve that ( as reported by Dellon)
Tibet Erdogru was the first to report 14 cases approached laparoscopically in 2014. This approach clearly gets better exposure, a better view of the PN and the ligaments and does not require cutting muscle. His original report showed improvement in pain level in 81% of operated patients. His results have been reproduced in various case reports since that time. Technology has improved the procedure dramatically.
What appears to be a big improvement in outcome for these patients was several MD's in Europe, one gynecologist in New Jersey( Dr. Shakiba), and Dr. Tibet Erdogru in Istanbul Turkey is Robotic Laparoscopic Surgery. With the Da Vinci Robotic approach, the surgical field is magnified and the steadiness of the instruments gives the surgeon both the excellent visualization and control needed to release the nerve from its compression points. The results of this would be expected to be in the 90 plus percentile in pain relief due to this and the obvious relationship of this occult nerve compression to the pain. The case numbers are too low to guarantee that, but the pathophysiology here is obvious and release of this compression should, over time, be little different from other nerve decompression surgeries ( Carpal Tunnel, Morton Neuroma, Lumbar Disc, etc).
The use of Da Vinci has accelerated in both Gynecology and Urology and I expect those surgeons will ultimately be the surgeons of choice for this nerve decompression procedure (neurolysis). The plastic surgeons have been limited by their "tool" and the need to approach from the outside. Even that may be improved as it becomes accepted that this is simply a nerve compression syndrome, not som vague condition. For instance, Carpal tunnel surgery can now be done as a microsurgery with a scope introduced thru the wrist. It is time to innovate as the pathology is clear.
This also explains the lack of any evidence for treatments such as Steroids, Gabapentanoids, Anti -depressants, Physical Therapy and mindfulness. While the latter can improve how one processes pain in your brain, even to near elimination of pain in a few, it will not relieve a compression pain signal from an ossified ligament rubbing on a thin nerve with the consistency of spaghetti!
Cryoablation or other forms of simply "killing the nerve" can still be done in the patients who do not respond to decompression. That is not an ideal approach, but it is far more livable than the typical pain from Pudendal Nerve (often Bilateral) Compression. I would consider that a back up position. Having had this for 23 years myself, I was prepared to do that if Dr Erdogan was unsuccessful. However, he relieved 90% of my pain as of surgery on 12/8/25 and I continue to see small improvements from there. My pain is so much less and so much more tolerable that that is no longer a consideration. I marvel as I am lying on my butt here writing this note. In months prior, I would already be facing 7/10 bilateral ischial tuberosity pain after just 30 minutes of typing this. I am sitting at 1/10.
Lastly, I have seen others who describe this pain "as hell". I can relate to that to that exact description. It is not hyperbole. 20 years of hell from a nerve compression from a burn from a microwave prostate procedure that interfered with sitting, lying and standing every day.... Sometimes you wonder how you survived it! That is not to mention all of the life threatening steroid complications I got from Steroids and the hundreds of thousands of dollars spent trying to relieve this pain and treat the complications.
In terms of cost. Plastic Surgeons typically expect cash payment and the fees I have seen mentioned in this blog represent, in my opinion, the desperation of the patients in pain and their willingness to do anything to get rid of the pain. In fact, if I had to , I would have literally paid over a million dollars to get rid of this pain. But, the severity of pain should not be the price tag for a surgery. It is the complexity and time it takes. Da Vinci Surgery should be covered by insurance in the future and be accessible to anyone with this devastating pain syndrome.
Luckily, even paying case, the charge from Dr. Erdogan was US $13,000 and the 3 day hospitalization and surgery costs was $6000. Hotel, food and Travel costs to surgery have to be added to that. I did do some touring while I was there. Some great sites to see in Istanbul!!
