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mandiPNE (@mandee)

Pudendal Nerve Entrapment/Neuropathy/Damage

Chronic Pain | Last Active: Jun 18 4:08pm | Replies (448)

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@jefjr

New member and first response here. I have had this condition (pudendal nerve entrapment) since 2012, and I have seen a number of specialists who have conducted all of the studies you mention and performed all of the procedures you mention. The end result, I'm sorry to say, is that the pain persists in much the same way as it does for your wife. I am male, and most of the specialists I have seen deal with this issue in female patients, which makes diagnoses and treatment even more difficult. For pain, I have been prescribed Diclofenac 75mg twice daily since my first (non-related) cervical spine surgery in 2009. The medication does not affect the pain in the pudendal region, and at this point my new primary care physician at Mayo is concerned about long term use in general.

I can certainly empathize with folks who have said that this condition is a 'lonely' problem, both because it is more rare in the general population and there apparently is not much data for physicians to access. It is also very difficult to have a conversation about the issue with anyone other than a physician or a family member, so I typically 'suffer in silence' most days, and feel grateful on the rare occasion when the pain is negligible for a day or so.

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Replies to "New member and first response here. I have had this condition (pudendal nerve entrapment) since 2012,..."

Have you discussed an implanted medication infusion pump (mine is a Medtronic). It’s best to go to a good Interventional Pain Management Clinic at a university or good hospital. I have suffered like you mostly in silence for 19 years and tried everything including invasive surgery. The pump is the only thing that kept me from jumping off a building. It doesn’t completely relieve the pain but it makes it manageable most of the time. You learn your own irritants over time. Stress is a big one. The pump requires no outside controls and lasts about six years. I have to get a refill about every 70 days. It contains morphine and Marcaine but does not get into your system like oral narcotics. It drips a minimal amount in your spinal fluid that acts as a block to keep the pain signals from going to the brain as much. I am on my second one (had pump for about ten years) and also supplement with gabapentin. Not a perfect fix but I have tried everything I have read on this forum and then some and it is the only thing that gave me anything close to a normal life back. Your comment about suffering in silence broke my heart and I had to reply because that is me. Suffering in silence for 19 years.

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

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