Health Organization for Pudendal Education

Hello everyone I am 21 and Male from Oklahoma and have as of posting not been diagnosed with anything PN related ,though I do believe I have suffered nerve damage and will get to that in a moment. I have been blessed to have been healthy all my life until this last winter break my Family and I finally realized that my chronic back pain was the result of Kidney stones. I ended up doing a shockwave Lithotripsy during which a Cystoscope was used to assist in the aiming of the machine I was anesthetized during the procedure and as such our story begins immediately almost after I wake up . All of my symptoms began only after I felt a sharp pain in the area back behind the genitalia and up and a bit to the left (what I believe to be my left PN) while I was peeing my first time after waking up after the surgery (this pain was accompanied with the expulsion of a number of blood clots) after this feeling there was an immediate loss of penile functionality which happened before my eyes midstream, now I am unable to pee in a “normal” fashion instead of ejecting a strong stream I must focus on breathing and relaxing hoping that some urine might slide out once I am relaxed enough needless to say this is not a preferable situation. Shooting groin pain both in the groin back behind and in the Shaft. retrograde ejaculation and a general inability likewise to have an adequate erection are also all isssued which I now face. This is obviously not the way I want to live but I was told that I am in a healing phase, however my surgery was about one month ago now and all the liturature I was given says I should have recovered by now. The other day after intense pain I went to to the ER where they allowed me to get my urine checked to see if I had an infection which I was worried about thankfully that was not the case. Ultimately what has lead me to believe I have nerve damage is that I now for the first time in my life experience Tactile Hallucinations mostly around the penis goin and
left thigh. I have never used any drugs I don’t smoke even so I certainly have never done DMT or or any other chemical that is associated with this type of experience I have no outstanding mental health issues such as schizophrenia or any mania which might lend itself towards this type of hallucination. The fingers of my left hand feel like they are burning in a fire which I have read can be caused by peripheral nerve damage.
This is the main reason why I think my condition is nerve related because of my tactile hallucinations perhaps they are PN related perhaps not but I just want to be able to present my symptoms to my urologist Without having them dismiss them as psychological / mental health related which I am afraid might happen if I mention that I am having tactile hallucinations. Any sort of insight on how best to inform my urologist about how i truthfully feel without seeming like I am doing a self diagnosis, I am open to the possibility that my issues are not nerve related that just seems to be the case atleast to me.
I am scheduled to meet it’s my urologists nurse practitioner this Tuesday the 23rd I just want my problems to be taken more seriously then they where during my initial check up after the surgery.

Hi Constantin,

I'm sorry to hear you are having this difficult experience. It sounds like something was damaged when you had the cystoscopy. Maybe I'm wrong about this but you might want to consider just going with the genital and urinary symptoms when you see this provider at your upcoming appointment, and not mention the tactile hallucinations in your hand right away, if at all, until they take you seriously about the urinary/penile problems and order some diagnostics to figure out what's going on -- like pelvic MRI, possibly a nerve block, and maybe a pelvic floor PT evaluation so they can do a rectal exam and press on the pudendal nerve via the rectum to see if it is painful there.

There isn't a lot of information online about tactile hallucinations related to neurological damage but it seems like your brain could be involved somehow. You could consider seeing a neurologist and having a brain MRI to rule out anything that could be going on there. I have not heard of tactile hallucinations with pudendal neuralgia but I have heard of changes in temperature sensation so I think it's entirely possible your nerve isn't sending signals to the brain accurately.

Violet

Thanj you for your input, I am seeing my Psychiatrist I was already considering this approach and I think you have confirmed my suspicions that should I talk about my other non GI symptoms that it might hurt my prospects of getting the treatment that I need. Again thank you for your Kind words.

Hello Constantin,

Your description reminds me of Robert Scaer, the great US trauma researcher (neurologist) who studied phantom limb pain. This usually occurs when limbs have been amputated. Scaer also transfers this pain to traumas of all kinds. Your kidney operation could be such a trauma. What you mention "tactile hallucinations" could also be called phantom pain..... in my opinion.

Perhaps you google a bit on "homunculus" (little man). Here is the Wikepedia page: https://en.wikipedia.org/wiki/Homunculus. Especially the neurological part should be interesting. Along the cortex in the brain there is a sensory and a motor "homunculus" - a representation of the human body in the brain. This could explain why your hand burns and you have these "tactile halluvinations" in the lower body. The hand takes up a lot of space in the sensory cortex, also the thighs. I also give you the German page. It is better as far as the neurological part is concerned and it contains pictures for a better understanding where which part of the body is located in the cortex https://de.wikipedia.org/wiki/Homunkulus

You don't need a psychiatrist, you need a good neurologist who is familiar with these relationships between the cortex and the body and perhaps with „phantom pain“. Perhaps you google a bit, what can be done in cases of „phantom pain“

I wish you all the best

Aristocat

When meeting with your urologist's nurse practitioner, clearly and honestly describe all your symptoms, including the burning sensations, difficulty urinating, tactile hallucinations, and erectile dysfunction, without jumping to conclusions about the cause. Emphasize that these symptoms began after your recent surgery and have significantly impacted your daily life. Request a thorough examination and express your desire to explore all possible diagnoses to ensure proper treatment, mentioning your concern about being dismissed. This approach will help your healthcare provider understand the severity of your condition and take your concerns seriously.

Great advice! Being open and honest about your symptoms is key.