Health Organization for Pudendal Education

Okiegirl,

I'm so very sorry to hear that the surgery was not successful and had complications. Thank you for posting the update and the caution for others.

April

All,

I had surgery with Dr. Dellon in December and wanted to share the results so far with the board. I've read all the feedback about Dellon on this board so I went into this with open eyes and modest expectations. I've personally had a good experience with him overall.

My symptoms were essentially left-sided perineal area pain for 3+ years. More pain with sitting, sex, and walking. I had tried PT, nerve blocks, botox to obturator internus, and pulsed radio frequency. None of them gave me significant relief. I did have two short-term successful nerve blocks in the Alcock's Canal which led me to believe that the pudendal nerve was the primary culprit.

After consultation with multiple doctors and a lot of my own research, I chose to have the resection of the left perineal branch of the pudendal nerve. I felt that the TG approach was too broad and invasive and not tailored to my symptoms. I considered cryo and neurostim too and feel those might still be options for me down the road.

As for the surgery:

I had no complications from the surgery. The incision was on my left inner thigh with what Dellon calls an "anterior" approach. The incision was 3-4 inches and I had pain there for about a week, but it was nothing too bad and it healed up pretty quickly.

Dellon advised me that I would feel some sensation when the nerve "wakes up." I have felt little jolts and some tingling here and there at the lower left butt cheek but nothing painful. I have been doing water therapy of just walking in the pool about 4-5 times per week. It seems to help a bit with the pain, but it also just feels good to get some moderate exercise since I've been so limited for so long. I also don't feel much loss of sensation on the perineum/scrotum from the removal of the nerve, or at least it's not noticeable to me.

It's been about a month since the surgery and so far I feel 30% improvement. The biggest benefit so far is that walking and gentle movement does not cause any additional pain. I am much more mobile already. But, I still have some pain with sitting. I still have some pain in the perineal area which is weird since the perineal nerve no longer goes there. I'm wondering if I have some rectal or dorsal symptoms too. I have no pain in my penis but just some minor tingling at the tip maybe once or twice a week. I don't feel pain in my rectum but maybe that branch is involved too? I've corresponded with Dellon and he has advised to be patient and stick with the therapy. My instinct is that this surgery will help and get a bit better over time, but there is something else still off that will cause some pain.

I'll post more about the recovery as I make further progress. I hope this summary helps folks that are considering this approach.

RC

Thanks for the update and do keep us posted as to your further recovery. Would be great to see how you're doing 3 months and 6 months down the line.

Were you able to get your insurance to pay for some or all of the procedure, by the way? If the TG approach is considered experimental by many, I imagine Dellon's anterior approach which only he does in the USA may also be?

Thanks for the update, RC. It's great to hear that your pain has already declined!

April

rc3432

Any updates from your surgery?

Sorry for my long absence. Below is an update on my surgery. The surgery was in December 2018 so it’s been about a year and a half since surgery. I consider it a success and have had 60-70% improvement and much better quality of life. I hope this helps others that are considering this option:

The good news is that the perineal pain is essentially gone. During the post-surgery water walking that Dellon suggested, I occasionally felt some little “jolts” there which he said to expect during the recovery. But, I am able to sit for much longer, including on hard surfaces, without much pain. I think the pudendal nerve is still agitated further up the nerve path because I still feel a bit of discomfort from time to time at the lower left buttock, at the exit of the Alcocks Canal. But, with the perineal pain gone, I don’t find that too bothersome.

The bad news is that some of the other pains I had pre-surgery moved to the forefront and were more noticeable after surgery.

The first problem was that I felt a more noticeable burning/tingling sensation at the base of my penis. I was able to mostly resolve this through physical therapy. I’ve had a good experience with Indigo Physiotherapy in Baltimore. They were able to help me understand that I still had unresolved tension and some unconscious spasms and twitching that were triggered by either bowel movement or sexual activity. I really dedicated myself to the PT and was able to develop some control over those muscles. I can now gently relax my pelvic floor muscles when I feel a twitch or spasm come on, and that has reduced that tingling at the base of the penis.

The second problem is that I still have left groin/inner thigh pain (above the surgical site). Dellon’s opinion from the start was that I also had GF nerve irritation along with the PN issues, and I think he’s correct. I’ve had GF, IL, and IH nerve blocks and the GF block gave me some relief. I tried PT with exercises to stretch the psoas and adductor muscles but with no consistent success. I had the left GF nerve cryoablation with Dr Fritz in Baltimore, which provided some partial relief but only lasted a few months. I considered having the cryo repeated, but due to COVID they have canceled all upcoming procedures. Dellon has suggested that the GF nerve can be removed completely, and I am considering that option- scheduled to see him in June.

I should also mention that I had a good experience with Dr. Echenberg in Pennsylvania during my recovery period, who I have not seen mentioned on this site. Excellent bedside manner. He helped me to understand that even post-surgery, the road to recovery requires some patience and that some flares are inevitable. He did a complete physical exam, which helped me see that I still had a lot of built up pelvic tension and some minor nerve irritation outside of the PN issues. It was his advice that convinced me to get back to gentle movement (walking, swimming) which has helped during the recovery.

I hope this is helpful, and let me know if you have any questions or further advice on the GF nerve issues.

What is the latest with you now?