Pudendal Nerve Doctors

I think that Pudendal Nerve doctors such as Dr. Renney, Dr. Conway, Dr. Antolak and Dr. Hibner are clearly a rare bunch that are to be applauded - devoting their time to a condition that many doctors do not believe exists.  I still don't know if I'm a sufferer of this condition.  Dr. Antolak says a resounding yes based on an abnormal Quantitative Sensory Test (described below).  Dr. Renney seems to say yes (based on that test as well).  

However, I've yet to have a successful pudendal nerve block - meaning, a block that relieves my pain - this is a diagnostic "must."  Until I have a block that takes away my pain, I do not believe I have PNE.  These doctors have modeled their practices and steps for diagnosis and surgical techniques after the French - most after Professor Roger Robert in Nantes, France.  The French use a successful block as one of the diagnostic tools.  My understanding is that without it, they will not perform surgery -- that's how important it is to the proper diagnosis. 

My issue with the US doctors I have seen and something to be aware of when visiting any of the PNE doctors is that it is usually all that they do.  Know that they will not evaluate you for anything else.  If there is any question in your mind whether another nerve is involved - I urge you to visit another doctor first.  Now, who that would be - I'm still trying to figure out.  Perhaps Dr. Marvel in Baltimore because he is very knowledgeable about PNE and other nerves as well.  I have only seen him once so I cannot speak for his long term care.  

The problem with the PNE doctors if you DON'T actually have PNE is that Pudendal Nerve Entrapment has likely become an obsession for them, and likely HAD to because they are to some extent outcasts in the medical society with so many doctors disbelieving in the condition, major hospitals refusing to perform the surgery or even knowing how to properly diagnose the condition.  If you don't have PNE but have similar enough symptoms and they do one test on you that comes back abnormal, these PNE guys are going to give you a PNE diagnosis (despite the diagnostic guidelines saying otherwise).  They talk all about the French - but this is NOT what the French are basing diagnosis on.  

This is a devastating diagnosis because your chances of getting your quality of life back are very small.  To give this diagnosis without being certain -- for instance, without a successful block -- is very, very premature.  Non-PNE doctors have refused to even entertain the idea that I could have this condition.  Is that because of lack of knowledge or because I really don't have it?  Unknown.  

To find out these doctors success rates, please contact them.  These are my recollections only:  By Dr. Renney's account if I have it correct, injections, self-care, or physical therapy will not get you better -- only surgery will.  And even then, only about a third will get better (better being defined by about 50% improved pain levels) - 3 or 4 individuals have been "cured."  1/3 will be made worse.  However, according to Dr. Antolak, using his self-care approach for 2-3 years, over 50% of his male patients have been cured (I was so dumb-struck that he was using these stats that I stopped listening to the percentages but they were much higher than 50) -- self-care involves sitting on a donut, no bending, lifting, crouching, stooping, etc.  Quality of life is greatly diminished during this period as I understood it.  Having a child would clearly be out of the question.  He claims injections also have cured over 50% of his male patients.  Surgery was rarely needed.  Quite a different story and told by two very different men.  But both with a devotion to helping those with PNE.  Antolak is warm and kind, his heart clearly in the right place; Renney lacks in bedside manner despite himself being a PNE sufferer that was shuffled from doctor to doctor before finding a diagnosis.

So back to me -- I've now had two doctors diagnose me with PNE based on an abnormal Quantitative Sensory Test (see below for what this test is).  This is not how the diagnosis is supposed to be made.  If you see a PNE doctor and you've got nerve pain in the lower pelvic region -- this will give you (in my non-doctor opinion) an abnormal quantitative sensory test (QST) result and from that, these PNE doctors are quick and ready to make that diagnosis (Antolak will give you the diagnosis based simply on that test; Renney will tell you to come back for more injections to try again - he won't make the diagnosis, that's up to you).  Perhaps this is why they are looked at with skepticism by some of mainstream medicine.  In my opinion, this is playing a bit fast and loose -- particularly if you're someone that does not have the classic PNE symptoms (pain in the perineum, rectal area).   

The Quantitative Sensory Test (warmth) (aka Genital Sensory Test)

Pudendal doctors use this test to test the nerves.  It is absolutely painless though it may aggravate your pain levels as it gets your nerves firing and basically gets them confused as shit if you have a pelvic nerve problem!  Essentially, it uses an index finger sized probe that is placed in different areas in the pelvic region (outside the body) that tests your ability to sense a change in temperature.  The probe goes from baseline (room temperature) to a warmer temperature. You announce as soon as you feel a change to warm.  Something abnormal would be if it takes too long to feel the temperature get warm, or if you feel it as hot, or if you feel it lingering as warm or hot after the probe has been removed.  

The same type test can be done with cold and vibratory stimulation but is not done by PNE doctors that I know of.  These tests are used for other purposes as well - sometimes to test sexual dysfunction.