Laparoscopic PE Surgery

[rjm53]

I am a retired physician with a typical story about someone (myself) with a pudendal nerve entrapment (PNE) syndrome. I experienced the usual long delay in diagnosis, the frustrating and unsuccessful initial therapy, and an inability to find physicians with an interest or expertise in this disorder. I initially developed a burning, chaffing sensation in my inner thighs after bike riding that progressed. I thought for years that it was a skin related chaffing issue. I tried multiple different ointments, changed bike seats, and tried multiple types of bike shorts and liners without success. A second consulted dermatologist suggested that in the absence of a visible rash that my symptoms were likely due to a “nerve issue”, akin to a diabetic neuropathy. My symptoms progressed such that I couldn’t sit, and I had progressive ED. I had been quite active hiking, biking, skiing etc. and could no longer do any of those activities because of bilateral buttock pain. There were some associated vague bladder and bowel issues as well and probably an exacerbation of my chronic intermittent back pain due to a previous fracture.

After considerable research following my derm appointment, I learned something about pudendal neuropathy, and learned a lot from this website. I had the usual unsuccessful medical adventures; physical therapy suggested the diagnosis but it didn’t clearly help my symptoms. No local physicians with whom I spoke had any expertise or real interest in PNE. A physiatrist told me I didn’t have pudendal nerve entrapment because of the lack of numbness in my inner thigh, which is actually not a diagnostic criterion for PNE. A pudendal nerve blocks was nondiagnostic as is often the case. It turns out that success with pudendal nerve blocks is quite variable, partly depending upon how the nerve is imaged during the procedure. The injection itself can cause swelling and pain making the results at times less than reliable. The physical therapists, some with expertise in pelvic floor disorders, were by far the most helpful medical providers actually both in verifying the diagnosis and helping me feel confident that I actually had PNE. I researched variable types of therapy and was underwhelmed with the published results in the surgical literature. A surgeon with whom I communicated from Johns Hopkins wanted to sever the nerve which seemed like a poor approach to me.

Every 6 months as I became more desperate, I would perform another literature search. Last November, (2020) I found a published article reporting on a large series of patients operated on laparoscopically with good results. After considerable thought and having had a trusted surgical colleague of mine review the article and the surgery videos posted online, I went to Belgium and had surgery by Dr Renaud Bollens. I had surgery to my left side but had symptoms to both sides prior to surgery. (Surgery to both sides is not usually performed at the same time because the potential for fecal incontinence). Now nearly 6 months post-surgery I am quite significantly improved. Like other patients who had the trans gluteal or trans ischial approach, I had considerable pain following the surgery which was predicted and described to me in detail prior to my operation. To my understanding full healing will take more time and I may need to have surgery on my right side in the future, depending upon my symptom status. Nevertheless, though far from perfect I am dramatically better and this surgery has been a lifesaving intervention for me. Dr Bollens didn’t promise me that I would be pain free but was optimistic that I would be improved and that has clearly been the case. I have nothing but the highest regard for Dr Bollens both as a technically superb surgeon, and as a caring, and thoughtful physician and an excellent communicator. I suggest looking at his website, reviewing the publication, and reviewing the videos on you tube. There are a few other physicians to my understanding that perform the laparoscopic approach and I don’t know much about them as there is not much in the published medical literature about their experience. This doesn’t mean anything either good or bad about their competence, just that I have inadequate information about them for me to make any kind of reasonably thoughtful evaluation or recommendation. I live in Washington state and did not find anyone in the United States with expertise in this procedure. I am currently trying to raise awareness about PNE with my local colleagues and hope some decide to become local champions of this disorder and develop the expertise to diagnose and treat patients with PNE.

[aussie_pain]

Thanks for writing your experience, great read. Surprisingly i had the chafing on the inner thighs to when playing sport. I had a simmilar experience as you going to countless professionals who wrote me off and it wasnt untill i noted same symptoms online that i came across it being a nerve entrapment. I Had a laparoscopy surgery done to this year, bilateral, i would private message you but it wont let me message for some reason. O will try message you to see if it works. Do you also have issues with sensation and bladder urgency?

[aussie_pain]

,

[rjm53]

I'm not sure where the entrapment was but I assume substantially freed up with severing the sacrospinous ligament. You should watch the YouTube video. Are you better and where did you have the surgery done. I am fine with a private email but don't know how to do that.

[rjm53]

I still have sensation issues but they are improving. I'm 68 with a large prostate so have these usual issues.

[alanforgood]

How are you feeling now? Still seeing improvement? I wonder how the recovery looks like for you I thought the laparoscopic has shorter recovery time than others?

[Jack_johnson]

Thanks for writing your experience, great read. Surprisingly i had the chafing on the inner thighs to when playing sport. I had a simmilar experience as you going to countless professionals who wrote me off and it wasnt untill i noted same symptoms online that i came across it being a nerve entrapment. I Had a laparoscopy surgery done to this year, bilateral, i would private message you but it wont let me message for some reason. O will try message you to see if it works. Do you also have issues with sensation and bladder urgency?

How are you now? I had laparoscopic surgery for severe ED and sensation issues, so for progress has been slow.

[Westbluu]

I am a retired physician with a typical story about someone (myself) with a pudendal nerve entrapment (PNE) syndrome. I experienced the usual long delay in diagnosis, the frustrating and unsuccessful initial therapy, and an inability to find physicians with an interest or expertise in this disorder. I initially developed a burning, chaffing sensation in my inner thighs after bike riding that progressed. I thought for years that it was a skin related chaffing issue. I tried multiple different ointments, changed bike seats, and tried multiple types of bike shorts and liners without success. A second consulted dermatologist suggested that in the absence of a visible rash that my symptoms were likely due to a “nerve issue”, akin to a diabetic neuropathy. My symptoms progressed such that I couldn’t sit, and I had progressive ED. I had been quite active hiking, biking, skiing etc. and could no longer do any of those activities because of bilateral buttock pain. There were some associated vague bladder and bowel issues as well and probably an exacerbation of my chronic intermittent back pain due to a previous fracture.

After considerable research following my derm appointment, I learned something about pudendal neuropathy, and learned a lot from this website. I had the usual unsuccessful medical adventures; physical therapy suggested the diagnosis but it didn’t clearly help my symptoms. No local physicians with whom I spoke had any expertise or real interest in PNE. A physiatrist told me I didn’t have pudendal nerve entrapment because of the lack of numbness in my inner thigh, which is actually not a diagnostic criterion for PNE. A pudendal nerve blocks was nondiagnostic as is often the case. It turns out that success with pudendal nerve blocks is quite variable, partly depending upon how the nerve is imaged during the procedure. The injection itself can cause swelling and pain making the results at times less than reliable. The physical therapists, some with expertise in pelvic floor disorders, were by far the most helpful medical providers actually both in verifying the diagnosis and helping me feel confident that I actually had PNE. I researched variable types of therapy and was underwhelmed with the published results in the surgical literature. A surgeon with whom I communicated from Johns Hopkins wanted to sever the nerve which seemed like a poor approach to me.

Every 6 months as I became more desperate, I would perform another literature search. Last November, (2020) I found a published article reporting on a large series of patients operated on laparoscopically with good results. After considerable thought and having had a trusted surgical colleague of mine review the article and the surgery videos posted online, I went to Belgium and had surgery by Dr Renaud Bollens. I had surgery to my left side but had symptoms to both sides prior to surgery. (Surgery to both sides is not usually performed at the same time because the potential for fecal incontinence). Now nearly 6 months post-surgery I am quite significantly improved. Like other patients who had the trans gluteal or trans ischial approach, I had considerable pain following the surgery which was predicted and described to me in detail prior to my operation. To my understanding full healing will take more time and I may need to have surgery on my right side in the future, depending upon my symptom status. Nevertheless, though far from perfect I am dramatically better and this surgery has been a lifesaving intervention for me. Dr Bollens didn’t promise me that I would be pain free but was optimistic that I would be improved and that has clearly been the case. I have nothing but the highest regard for Dr Bollens both as a technically superb surgeon, and as a caring, and thoughtful physician and an excellent communicator. I suggest looking at his website, reviewing the publication, and reviewing the videos on you tube. There are a few other physicians to my understanding that perform the laparoscopic approach and I don’t know much about them as there is not much in the published medical literature about their experience. This doesn’t mean anything either good or bad about their competence, just that I have inadequate information about them for me to make any kind of reasonably thoughtful evaluation or recommendation. I live in Washington state and did not find anyone in the United States with expertise in this procedure. I am currently trying to raise awareness about PNE with my local colleagues and hope some decide to become local champions of this disorder and develop the expertise to diagnose and treat patients with PNE.

Hi
For how many months did you experience surgical pain such as stinging or inability to sit after the surgery?

[avalove]

Would love to know how you’re going and if you got your other side done. Thanks

[jceaves]

Likewise, I would like an update. I'm keenly interested in hearing about all outcomes of this surgery.

I contacted Dr. Bollens in May of 2021 after reading his paper on laparoscopic pudendal decompression. My problem was a sudden and greatly reduced sensation of the penis and surrounding area and persistent ED. I also had frequent lower back and gluteal pain and pain consistent with pudendal entrapment after physical activities.

I opted not to get the surgery, since it involved severing the illiosacral ligament. I felt it would impair my mobility, since I am very active (skier, runner, swimmer, bicyclist, hiker, etc.).