Health Organization for Pudendal Education

Hi everyone,

I had pursued these forums as well as conducted my own literature review before I decided to get a transgluteal pudendal nerve decompression performed. I found there was a lot of negativity on these threads mixed with misinformation and I’m hoping I can shine some light on similar issues many of you may be suffering from with something positive. I’m fortunate that I had a strong support system, I know how to advocate for myself and I just happen to be a novice clinician with an inquisitive mind - otherwise I would have been up shits creek with what I had been dealing with.

My symptoms started a little under 2 years ago with some mild pelvic pain, premature ejaculation and mild ED. I happened to be pursuing my nurse practitioner degree at the time, was a charge RN in a COVID ICU and was planning a wedding - so naturally I chalked it up to stress and figured it would just resolve on its own. Boy was I wrong. The pelvic pain worsened over time especially with sitting and I started getting shocks in my left scrotum and penis as well as having the ED becoming more profound. I started feeling like I had a golfball in my rectum too. My sex life started becoming very sparse and painful. At the time my fiancée just thought I was losing attraction to her - it was awful and very frustrating as I could not find a physician to truly explain why I was getting my symptoms.

Multiple months of pelvic floor PT, acupuncture, urologists, colorectal surgeons, anesthesiologists later. I finally did my homework and found Dr. Mark Conway out of NH. Pending trialing pudendal nerve blocks with pain relief he agreed to help me and after doing my own research and discussing the risks/benefits of a pudendal nerve decompression with him I opted to go forward. I wanted to mention I had ruled a lot of other diagnoses out by the time I got to him and I also had a positive Tinels sign on physical exam.

Fast forward I’m almost a week post-op, I was positive for pudendal nerve entrapment between the sacrospinous and sacrotuberous ligament on the left side. I will say recovery is tough… solid amount of surgical pain, lots of prickly nerve sensations coming back however, with that, I had my first solid spontaneous erection in almost a year. That’s progress… this procedure is definitely not for everyone or the faint of heart. Time will tell on if the pain will finally go away and my sex life will return, but I’m optimistic. Nerves heal slowly and the artery supplying my manlihood was significantly compressed too. I encourage you all to do your homework… in my experiences I found multiple urologists are not well versed on this condition at all. You have to be persistent and find providers who are aware of it so you can get yourself in the right direction. Best of luck to those whom are dealing with pudendal neuralgia - there is hope!

- Nate

Hi Nate,

Thanks for your good advice for others reading the forum. And thanks for your service during Covid. I'm sure that must not have been easy!

I completely agree with you about the recovery being tough and the surgery not being for the faint of heart. I will admit that in the early days after PNE surgery I was afraid that I had made a mistake - even to the point that I decided post-op to try hyperbaric oxygen in hopes that the healing would take place faster. There was sufficient peer reviewed literature to support hyperbaric O2 as a treatment for damaged nerves so insurance paid for half of it. I can't say for sure if it helped in my recovery. To be effective, you would have to have an entrapped nerve released before trying it. But I think it is possible that hyperbaric O2 helped and it certainly didn't hurt. SLOWLY over time, the pain began to subside. So, I tell you this, just to give you hope that there can be light at the end of the tunnel. Many people start to notice significant pain relief at around the 10th month post-op. I was able to go off narcotics at 9 months post-op. Hopefully for you it will be sooner.

Violet

Hi Violet,

Very interesting, I did an entire literature review myself before decided to undergo my pudendal nerve decompression surgery and I didn’t see anything about hyperbaric oxygen treatments post-op - gonna keep that in mind for sure. I think the main sources of my pain are the nerves actually waking up and trying to heal themself and the obvious surgical pain. I actually stopped narcotics within 3-4 days post-op and I’m trying not to use them at all. I’m taking small walks several times a day at this point. One of the branches of my pudendal nerve that was entrapped was the inferior rectal branch asides from the main pudendal branch. I’ll spare the details on that, but constipation is something I’ve tried to avoid for a long time now so I’m really trying to avoid narcotics unless the pain is like 10/10. I’m living at a 8/10 otherwise. I’m hoping to get back to work within 6 to 12 weeks, if the pain settles down somewhat. From symptom onset to my diagnosis was a little less than 2 years for me so I consider myself very fortunate in that regard, it wasn’t without diligent research and ruling out the other differential diagnoses quickly to get to the point of pudendal nerve decompression and positive diagnosis of pudendal nerve entrapment. I’m also a young male in my early 30s and this was congenital (scoliosis/pelvic tilt/sacroiliac joint dysfunction)/possibly from weightlifting injuries prior - so again optimistic that I can hopefully heal faster. I’ll try to throw in updates here when I can as things progress with the healing process.

Cheers,

Nate, APRN

Thanks for the post, Nate. So glad you were able to figure it all out, and that the surgery went well and that you are seeing progress. Yes, the pain declines very slowly and for me it was not fully linear. I think it's helpful to know that so you don't get concerned by upticks in pain.

April

Nate, I applaud you for not wanting to take too many narcotics. I'm not even sure you could find a doctor who would prescribe them for any length of time nowadays. When I took narcotics, I just used them in the evening/night so I could sort of be human for my family in the evening and sleep at night. I was worried about developing an addiction or tolerance, so I didn't use them around the clock.

Anyway -- hope to hear good news from you in the future and that your pain will subside.

Violet

1 month post-op updates from pudendal nerve decompression:

Walking much more now - have to clear multiple sets of stairs to get outside, safely using one step walk techniques to not put pressure on operated side - walking outside.

Avoiding sitting per surgeons guidelines - can still feel a lot of tightness and pressure at the operated side.

Erections improving, spontaneous ones are back (it’s been almost a year since), more blood flow and sensation returning on the left side. Bowel movements are becoming easier, still have some pain, more control - Magnesium citrate helps a lot with this.

Pain can still be pretty significant - more so the nerve flares, surgical pain is dissipating. The nerve flares will radiate throughout the rectum, perineum, scrotum and left side of my pelvis where I was losing sensation. Only taking Tylenol and icing for pain management. Debating about trialing Gabapentin or possibly Duloxetine if it persists so I can function when I go back to work. Some of the experts state Gabapentin can slowdown and inhibit the nerve healing process - so a little conflicted on that one.

Overall slow process, but continuing to see positive signs slowly!

I will try to update again in 3 months - planning on doing pelvic floor therapy again by that point to get the muscles working synergistically again.

Hey Nate, glad to hear you are seeing some improvements. What surgical approach did Dr. Conway use for you? Hopefully you can find some medication that helps to improve your quality of life without too many side effects.

Violet

Hi Violet,

He did a modified transgluteal approach on the left side. I am glad too, despite the tough recovery he was able to visualize two sites of entrapment/compression.

Well, that's hopeful that he was able to relieve the compressions. I know it's tough going through that healing period that takes time.

Violet

Violet M wrote: ↑Fri Oct 27, 2023 5:33 am Well, that's hopeful that he was able to relieve the compressions. I know it's tough going through that healing period that takes time.

Violet

Hello. I have pudendal neralgia and I just had surgery. I want to ask you something. My left perineal anus area is numb and there is no feeling. is this normal