Voice, Tlecum and Frustrated – each one of you have posted some variation of a diagnosis relating to Pudendal Neuropathy. From different doctors than the French neurological team which has diagnosed 10 out of 10 PFSers with neuropathy using modified EMG and SSEP and doppler ultrasound tests.
Can you outline exactly what tests you had done and how you went about procuring these tests? Seems challenging to get the proper diagnostic procedure in the U.S.
Pricked my leg and then penis and asked to compare.
He ran a little wheel up my stomach (wheel had little spikes) and asked when sensation decreased
Put a contraption on his finger and stuck it up my bum. The contraction sent an electrical signal and recorded my response time to the signal.
placed a steel rod against tip of my penis and asked me to tell him when I could feel it. The steel rod was slowly heated.
I believe I could not feel the steel rod (test 4) until it reached 104 degrees Fahrenheit. The odd thing with this test is I would continue to feel it burning me even when the rod was removed.
He told me that he that the tests confirmed what he already knew. He said that numbness in my penis and pain in my perineum are clear indicators of pudendal neuropathy. One of the hallmarks of pudendal neuropathy is that the pain in the perineum is relieved while lying down or sitting on a toilet and is most acute while sitting on a chair.
I can say that the pain in my perineum has completely gone away by following his advice (don’t lift heavy things, take stairs one at a time and most importantly avoid sitting.
I believe another test is to have injections in the area of the perineum and see if the pain goes away-I have not done this yet.
I also had a delayed response to the heat/cold sensory test. But on a separate doctor visit, the SSEP and EMG testing was not accurate/sensitive enough to pick up a signal and give us a result to interpret.
Your doctor (Anatolak, right?) is one of the doctors listed on the pudendalhope site which also links to other doctors and physical therapists worldwide.
What I’m curious to see is if he diagnosed you with pudendal NEUROPATHY or ENTRAPMENT. The pudendal hope site deals with pain as one of the primary symptoms (which isn’t pain on a level and type that most PFSers describe). Entrapment can CAUSE neuropathy and pelvic floor issues which are responsive to physical therapy, but Entrapment sounds more serious and does not respond to PT.
I think there is much to be learned from the hardflaccid.org and pudendalhope.org sites. We can’t ignore how many PFSers are coming back with these diagnoses of pudendal neuropathy. If inflammation is the culprit here, it would explain why so many supplements and treatments work temporarily: we’re arbitrarily throwing dozens of switches on and off. There is undeniable symptom overlap with patient communities with some sort of physical nerve or muscle impingement or trauma, and finasteride’s neurosteroid inhibition seems like a very likely candidate for physiological changes to the pudendal nerve and to the pelvic floor muscles. Finasteride brings about it’s own unique issues and twists, but there are dots to be connected or explored here, specifically on all sexual and sexual organ issues: loss of sensitivity, erectile dysfunction, urinary issues, varicocele, etc.
It would be great if more PFSers sought out doctors and physical therapists in these fields to get a larger sample size of diagnoses. But please get informed on the testing techniques. Some tests do not necessarily rule out all conditions. I’m trying to rapidly get a grip on this material myself…from my current, working, evolving understanding:
• A 7 Tesla Strength MRI is necessary to rule demyelination out. (Per Kazman, and in reference to Alex Miller’s PFS demyelination theory due to finasteride’s inhibition of allopregnanolone).
• a 3 Tesla MRI can diagnose ENTRAPMENT or significant changes to the nerves. There is a NY doctor listed on the pudendalhope.org site that has a special protocol (software/settings) to get the most out of this machine. Supposedly other doctors can report false negative tests with this same machinery.
• Properly done EMG, SSEP and MNMLT can be helpful.
Can’t stress this enough: don’t get tripped up on the differences between the PNE and HF communities. PFS is an unknown entity, of as yet unknown etiology – so let’s use our imaginations a little as well as the 13 cases of diagnosed neuropathy as a springboard to try relevant treatments and pool together results and experiences.
is there any kind of xray or MRI or test or something that actually shows the problem besides doing this type of physical test on the outside? what did the other people do who tested positive for this?
there are many types of reasons why something on our body would be numb, i don’t see how him checking the numbness is proving that this is the exact problem we are having.
I don’t like the idea of a needle being put in the perineum! Is that even safe?
I am a bit sceptical when it comes to urologists etc, for example, why they would stick a needle in your penis to give you an erection is beyond me…
‘here you go have peyronies too’…why!?
Anyway I think it would be important to compile a list of tests and where they can be taken…I for one don’t live in the US or France so would be nice to try and track one of these machines down nearby.
Supposedly no but I am not a firm believer that everything traditional western medicine says is always true.
I’ve been reading up on this stuff and after reading that most people who have surgical nerve damage from their prostate being removed get their sexual function back due to the nerve healing. I really can’t see how a drug could cause more damage than surgery.
This diagnosis included ‘inflammation’ which to me suggests the nerve is being irritated, the nerve will not heal with chronic irritation going on. 1. Put out the fire. 2. Heal. That’s my personal thought anyway and there are cases of improvement on this forum, albeit a very select few.
Anyway…best thing to do is not worry about it. Worst case scenario - you have to wait until there is a treatment.
I am going to stop using this forum soon I think. I need to focus my energy on curing myself and not looking for answers.