Surgery Success Story

[Gwlsn147]

Hello Everyone,

Wanted to share my story as this can be a rather depressing condition, particularly when browsing the forums/ FB pages. There appear to be very few stories of success (or "hope") out there. This is something that very much upset me when I was trying to find a resolution to my problems. So, I will provide a brief summary of my journey:

I began suffering from pudendal neuralgia in the summer of 2015. I was an avid cyclist at the time, and this, combined with very poor anatomical luck, is what caused my pudendal neuralgia. My symptoms were more minor than most on this forum it seems. These symptoms included allodynia, itching, and burning at the foreskin, scrotum, and rectal skin. I also had intermittent shocking pain run through my pelvis. I did not have too much trouble sitting except for during significant flare-ups, but any form of exercise was pretty much out of the question. It was slightly more difficult to get an erection.

I tried *everything* prior to surgery. I saw dermatologists, urologists, neurologists, sports medicine physicians, internal medicine physicians, and a several general and pelvic PTs. In total, I would say I saw at least 20 different medical professionals in trying to get better. I tried several stints of pelvic PT, behavior modifications, nerve blocks, pulsed radio frequency ablation, and medications including pregabalin, gabapentin, noritryptiline, amitryptiline, duloxetine, cyclobenzaprine, and many others (including topicals). None of these worked, and the only one that I would say had a minor, temporary positive effect was the radio frequency ablation. Ultimately, I decided in 2018 to try bilateral transgluteal pudendal nerve decompression surgery with Dr. Mark Conway. I chose Dr. Conway because he has the most experience with this condition of any surgeon in the US other than Dr. Hibner (who did not see men at the time).

The recovery was excessively long and frustrating. There were points in the recovery where I thought getting the procedure had absolutely ruined my life. However, after about a year to a year and a half I finally got back to "normal" and realized that all of my pudendal neuralgia symptoms were gone. I have had some persistent pain from the surgery itself (in the form of left-sided knee/ pelvis pain), but it is very minor at this point and really only prevents me from doing multiple days of long-distance running. Since then, all of my pudendal neuralgia symptoms have been essentially gone with the occasional flare-up, which is easily managed by some trigger point release to my piriformis. I walk 3-6 miles a day at work and go to the gym 4-5 times a week, which includes very strenuous leg and core days; the only things I avoid now are excessive squatting and running (and cycling, obviously).

I consider myself very fortunate. Hopefully this post can help some people realize that getting better is possible, even if you have tried almost everything. One piece of advice I could give is that, if you are intelligent enough, you should educate yourself as much as possible on the academic literature surrounding this condition and relevant anatomy, physiology, and treatments. Most physicians are not familiar with this condition and will not be able to help you get what you need.

***I should also add that I flew out to California to receive focused shockwave therapy treatment from a chiropractor (Dr. Adam Fields) about 1.5 years after the surgery. This modality has been shown to be effective at reducing scar tissue in other applications. Subjectively I feel as if it did help my recovery.

[Gwlsn147]

One last thing. I could also recommend trying to take a mind-body approach (start with a book by Dr. John Sarno, perhaps). This significantly helped me when I felt that I was not recovering from the surgery. Ideally I would have tried this before surgery as well.

[Violet M]

Thanks for posting your story. Glad to hear you are doing so well! Your story sounds a bit similar to mine in some ways. I believe my problems were a combination of exercise and anatomical issues. Like you, I tried a lot of things before PNE surgery and nothing seemed to help. I started noticing some improvements about 9 months after surgery but about 18 months after surgery was when things really started getting better. I tried Sarno's method before surgery but it didn't seem to help at all.

I am intrigued by the shockwave therapy you had from Dr. Fields because scar tissue seems to be a problem that many people have trouble with. How many treatments did you have and did insurance cover it? Is this the right website? https://www.fieldsfamilychiro.com/

Thanks,

Violet

[Joygumpel]

Hello folks, after 1 1/2 years of feeling completely distraught, im having PNE surgery in @ a month. Im scared i have not asked enough questions, or the right questions. Im so physically exausted at this point, i feel like i dont care about the risks i must do something to ease the pain. Can you give me ideas on what to be aware of, questions i may have missed ? The nerve is not being cut so i feel less frightened but..... any help out there? So sorry for any and all of you suffering from this insand little nerve!!!

[April]

Hi Joy,

I'm sure it feels good to final make the decision. I know I felt that way when I finally decided to go ahead with mine. These are the questions I asked the surgeon when trying to determine if I should do it: How did he determine that I was a good candidate for surgery. What was his sense of the likelihood of success and the likelihood that I would get worse. Which technique did he use (e.g., transgluteal procedure) and why. I also asked a lot of questions about the recovery process.

Take care, and keep us posted on your progress.

April

[gjones]

One last thing. I could also recommend trying to take a mind-body approach (start with a book by Dr. John Sarno, perhaps). This significantly helped me when I felt that I was not recovering from the surgery. Ideally I would have tried this before surgery as well.

Thanks for posting about your success following surgery.
At what point during your recovery from surgery did you try the "mind body" approach? Had you begun to experience an improvement before you started the mind body method?

[helen1000]

I am so happy for you. I was healed by repair of left labrum tear of hip and left labrum tear of shoulder, SI joint stabilization. But everyone has in reality different reasons to be in pudendal pain. I wish you good luck and happiness

[helen1000]

@Joygumpel. Please, please, please, check your hips before agreeing. Hip operation saved me. I was scheduled with Dr Conway. I thank God every day that I did check it.

[Gwlsn147]

To answer to some questions.
1. Violet: Yes, that is the correct website for Dr. Fields. I flew to California and had shockwave therapy every day for one week. Insurance did not cover the treatment (although I didn't try).
2. Joygumpel: Hope your surgery went well!
3. Gjones: I tried the "mind body" approach about a year after my surgery. I had begun to experience improvement from my pudendal neuralgia symptoms by that time. I would say the mind-body approach helped me more with my persistent post-surgical pain from the surgery itself, which I was having huge problems with at the time on my left side.

[Lisaschlactus]

Hi Joy,

I'm sure it feels good to final make the decision. I know I felt that way when I finally decided to go ahead with mine. These are the questions I asked the surgeon when trying to determine if I should do it: How did he determine that I was a good candidate for surgery. What was his sense of the likelihood of success and the likelihood that I would get worse. Which technique did he use (e.g., transgluteal procedure) and why. I also asked a lot of questions about the recovery process.

Take care, and keep us posted on your progress.

April

I am six weeks post op from laparoscopic pne surgery I’ve never felt worse physically or emotionally I think I’ve made the biggest mistake of my life