Health Organization for Pudendal Education

I have two questions at the end. Any help would be greatly appreciated!

History
Intense pain started immediately after a routine prostate exam. Pain subsided but never complete went away. As months went by the pain increased to its current level of 7 to 10. That was 4 years ago!

Treatments in order:

1. Urologist treated for prostatitis 2 x times
2. MRI for prostate and rectal problems - results negative
3. Colon / Rectal surgeon does internal and external exam - results negative
4. Treated for anal fissure although it was not visually detected - results negative
5. Referred back to urologist, more tests and painful exams - results negative
6. I stumble upon pudendalhope.com and find an exact match of my symptoms
7. I see a neurologist and show them my findings, I am diagnosed with clinical pudendal neuralgia
8. I am sent to very knowledgeable physical therapist, 7 months - results negative
9. PT tells me to stay far away from Aaron Filler, who up until that moment I have never heard of.
10. Kaiser finally agrees to pudendal nerve blocks one side only – 3 days relief
11. I demand more – two more blocks, one helped 3 days, the other - results negative
12. Kaiser refuses to do any more blocks or any more procedures
13. I go see Dr. Dellon in his Arizona office 750.00 out of pocket
14. He recommends one or possibly two surgeries at about $50K each. I had to pay cash money, but they would help you try and get reimbursed from Kaiser. Kaiser says they will not cover any part of it.
15. On the way out of his office, after paying my 750.00 bill, I asked him how long recovery would be. He screamed at me that my 45 minute time was up and slammed the door in my face. This guy has serious mental issues and thinks of himself as a god. I would not let him operate on an ingrown toe nail.
16. I demand from Kaiser to be referred out, they finally agree
17. UCLA doctors says there is nothing they can do
18. Cedar-Sinai doctor suggests a pain doctor in Santa Monica
19. SM Doctor performs New A2M Injections for $3,000.00 out of pocket - - results negative
20. SM doctor performs a slightly different nerve block $2,500 - results negative
21. SM Doctor performs Botox injects $2000.00 out of pocket - results negative
22. SM doctor warns me that surgery is very risky and suggested I say far away from doctors claiming to do surgery for PNE. Says they are experimenting with your body.
23. Against all advice, I go see Dr. Aaron Filler (reference #8 above) in Santa Monic, I am asked to sign a dozen or so different legal forms stating he is not responsible for anything and I could be worse after any procedure. I have never seen any intake forms like this in my life.
24. He suggested FIVE simultaneous never blocks as a diagnostic tool for about $20,000.00 and surgery for about $120,000.00 best I could figure. I had to pay cash money, but they would help you try and get reimbursed from Kaiser. Kaiser says they will not cover any part of it.
25. I do agree to have Dr Filler do a $2,000.00 out of pocket MRN which is an MRI of the nerves.
26. Go to USC doctor 500.00 out of pocket, he suggest RPA or Pulsed Radio Ablation
27. USC doctor warns me that every MRN he has seen shows the same exact symptoms. He is convinced if he himself complained of PNE and had an MRN for it, that the MRN would say he was entrapped. The problem is the surgeon is usually the same guy who reads the MRN.
28. USC Doctor there is a Kaiser doctor who knows how to do all these new procedures, included Pulsed Radio Ablation. I am in disbelief that no Kaiser doctor ever mentioning her.
29. I see a GREAT Kaiser doctor who agrees to help me. See does two combined bilateral nerve blocks and Pulsed Radio Ablations. I have some relief for about 3 weeks. Not cured by any stretch, but some relief.
30. I now have a few more of those coming up, but honestly I am not hopeful.
31. NOTE: I have been on every combination of pain medication you could imagine.

If you got through all that, I would like to describe my symptoms and see if anyone else has anything like what I am experiencing. My pain emanates from one specific spot. About the size of a dime. It is inside my rectum about one inch to the right. Sitting down feels like a dagger is being thrust into that spot. I can touch it externally; I have showed it to every doctor. Every internal and external examination as well as 3 MRI show nothing there. The pain has been there so long (4 years), that the pain now radiates to both sides of my buttocks and up to my neither regions. It seems to me like this should be correctable, like a tooth that needs to be pulled. Something is wrong there. How could this not be correctable?
One last thing. Every doctor who has examined me and seen my charts agrees I have PN. I even had the painful nerve tests to back it up. Honestly, what else is left but finding surgeon who is not out to bolster his ego or his wallet and truly wants to help.

So my two questions are:

1. Does any does else have these exact symptoms?
2. Is there anyone on this forum who has had success with surgery and if so, who did it and how can I get in touch with them.

Thank you!

I had 2 surgeries; first one made me worse; second one didn't do much.
I have not heard good news about Dillion.
Good luck!

Ray P. wrote:I had 2 surgeries; first one made me worse; second one didn't do much.
I have not heard good news about Dillion.
Good luck!

Thank you for your reply! I hope you find some relief.

Tony, when the knowledgeable PT works on your pelvic floor, was she able to tell you what landmark that sore spot is at? The reason I ask is because I had one spot on the right side that felt like a dagger, as you described. When Dr. Bautrant did a pelvic exam he pressed right on that spot and said, "that's where it hurts, isn't it?" and he was right. He was pressing on the ischial spine where the 2 ligaments criss cross with the pudendal nerve running between them. So I had surgery from Dr. Bautrant to release one of those ligaments and I am doing great now. In fact, about 1 month after surgery that knife-like spot of pain was much better. I still had a lot of residual burning that slowly faded over time. So, I don't know if surgery would help you. I would only consider it if your quality of life is so poor that you are willing to risk getting worse because as we all know, there are no guarantees with PNE surgery. And I wouldn't even consider surgery unless you match the Nantes Criteria pretty closely and you have a really good indication that you have an entrapment. You do have other options you can try too.

So my symptoms were not rectal like yours but I had that one primary spot of pain that eventually seemed to spread through my entire pelvis. My surgeon was Dr. Bautrant. I am not crazy about the approach he uses for men because there is not really a good point of entry on men for that approach. So, I'm not sure who would be the best person to go to in the US now since Dr. Hibner does not see males anyore -- unless that has changed recently. You could always call and ask.

Violet

Hi tony,
Wow you have tried everything. I am sorry to hear that you have been suffering with this for so long. I have similar symptoms and more. I also have a spot like the size of a quarter that I can put my finger on down there that really hurts. Something is definitely injured there but every doctor I have seen doesn't even want to look at it when they hear where its at. I can't sit either. I didnt get a good impression from Dellon either. Unfortunately I think him and dr. Azmann in Vienna Austria are the only two surgeons in the world that do the dorsal nerve decompression surgery. I have read about some people's experiences on here who had that done and they failed. I am tired of this suffering and not sure where to turn either. I am going to continue with my pt now and conservative treatments and after that. I may or may not turn to surgery. I haven't decided yet. It's a big step, but so is living with this. Good luck with your fight against this hell.
Frank

Yes I have rectal/ tailbone pain

Nobody can see or feel what I feel

Undergone 2 unsuccessful PNE surgeries

jaxi123 wrote:Yes I have rectal/ tailbone pain

Nobody can see or feel what I feel

Undergone 2 unsuccessful PNE surgeries

Sorry to hear that. How long have you had this? Who did your surgeries if you don't mind me asking?

15 years
Ansell did the first one and what a jerk he was
Hibner the redo. Re entrapped with scar tissue. Very upsetting!

Violet M wrote: So my symptoms were not rectal like yours but I had that one primary spot of pain that eventually seemed to spread through my entire pelvis. My surgeon was Dr. Bautrant. I am not crazy about the approach he uses for men because there is not really a good point of entry on men for that approach. So, I'm not sure who would be the best person to go to in the US now since Dr. Hibner does not see males anyore -- unless that has changed recently. You could always call and ask.

Violet

Violet,

My quality of life is poor. But the pain is off the charts. Where is Dr. Bautrant and how would I get in touch with him? I think I would at least do an office visit. Thank you!

Have you tried any drugs such as valium or other Benzodiazepines? A lot of people posting here have found they help a lot.