Surgery Success Story

[zazzaleon]

I am sad to hear you are struggling after surgery , did the surgery made your sympthoms worst ?

where you did the surgery ?

[benraycamp0]

Hi Lisaschlactus - could you tell us more about your story and symptoms?
Who did you get the surgery with?

[Violet M]

Lisaschlactus,

The recovery from surgery can be rough. I had a difficult time after surgery too and I took opioids until 9 months after surgery. I didn't start walking much until 5 months after surgery and then I started walking 5 minutes a day at first. Are your doctors prescribing any medications for pain?

Violet

[Gwlsn147]

There were also times when I felt that having surgery was the worst decision in my life. It is a long recovery -- don't give up!

[bartland]

Thank you so much for sharing your success story! I am looking to likely have the surgery by Dr Conway in early March and your story is very encouraging

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]

Hello Everyone,

I thought I would post an update. Last year I had a significant recurrence of my pudendal neuralgia. I went from running, climbing, doing jiu jitsu, unlimited sitting, and doing pretty much anything else I wanted to being completely disabled within a period of about three weeks. Last July the pain was so bad, it was almost as if I had gotten out of surgery a few weeks prior. I confined myself almost completely to my bed for over two months, only sitting or walking to go to appointments or to eat. At first I thought this was due to my high physical activity. So, I started physical therapy (even flew across the country), began using lots of healing peptides (TB500, BPC157, Sermorelin, GHK-Cu, etc.), sat the absolute minimum, and did hyperbaric oxygen therapy, class IV laser, and focused shockwave therapy. None of this worked at all and I was devastated. Then, I remembered my encounter with John Sarno several years before. I once again took the psychosomatic approach to my pain, reading such books as "The Mind Body Prescription," "The Divided Mind," and "The Great Pain Deception" among others. I quickly applied the principles I found there and almost instantly got better -- it was incredible! I went from having restricted sitting and only short walking in September to a complete return to work (~8 hours sitting) and physical activity (squatting, cardio, etc.) in October. Hopefully some of you will read this and consider a different perspective than the one you have had up until now.

[jaxi123]

Can you share the principles that made you some better?

[Gwlsn147]

Yes, you can see Dr. Sarno's 12 daily principles here: https://www.sarnoclinic.com/dr-sarno-12 ... nders-pdf/

I also recommend starting with "The Mind Body Prescription."

[eraser]

Hello Everyone,

I thought I would post an update. Last year I had a significant recurrence of my pudendal neuralgia. I went from running, climbing, doing jiu jitsu, unlimited sitting, and doing pretty much anything else I wanted to being completely disabled within a period of about three weeks. Last July the pain was so bad, it was almost as if I had gotten out of surgery a few weeks prior. I confined myself almost completely to my bed for over two months, only sitting or walking to go to appointments or to eat. At first I thought this was due to my high physical activity. So, I started physical therapy (even flew across the country), began using lots of healing peptides (TB500, BPC157, Sermorelin, GHK-Cu, etc.), sat the absolute minimum, and did hyperbaric oxygen therapy, class IV laser, and focused shockwave therapy. None of this worked at all and I was devastated. Then, I remembered my encounter with John Sarno several years before. I once again took the psychosomatic approach to my pain, reading such books as "The Mind Body Prescription," "The Divided Mind," and "The Great Pain Deception" among others. I quickly applied the principles I found there and almost instantly got better -- it was incredible! I went from having restricted sitting and only short walking in September to a complete return to work (~8 hours sitting) and physical activity (squatting, cardio, etc.) in October. Hopefully some of you will read this and consider a different perspective than the one you have had up until now.

I am glad it worked for you but perhaps you did not have a reccurence, as you cannot get better from thinking differently as it is a physical illness (a nerve problem) as opposed to a psychiatric one.

[Gwlsn147]

I am glad it worked for you but perhaps you did not have a reccurence, as you cannot get better from thinking differently as it is a physical illness (a nerve problem) as opposed to a psychiatric one.

True. I suppose you, a stranger on the internet, would know more than Dr. Conway and three pelvic floor PTs (with over 60 years of experience and hundreds of PN cases between them) who I saw during the time window of my recurrence, and who all agreed that I was suffering from pudendal neuralgia.

If you would read the source material I reference you will see that I (and the authors) agree that the illness is indeed physical. I could also reference the story of ezer, another user who used to frequent the forum. He was the one that introduced me to this approach. Many others have reported similar successes.

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