My case

[excentric]

Well, I decide here to tell a brief passage of my story to see if someone can guide me.
I am a 31 year old guy from Spain, “mild” symptoms started at 26, got significantly worse before I turned 29.

- 2018: I start with sudden erectile dysfunction and slight penile hypoaesthesia after a small injury to the anal sphincter of unknown cause. The wound disappears in a few days but these symptoms persist. Visits to urologists and neurologists, ruling out pudendal neuropathy after evoked potentials and MRI.

- End of 2019: After the above symptoms persist, I suffer from severe constipation for a few weeks causing dull pain in my right ischium. I repeat my pudendal potentials with normal results. The doctor diagnosed me with myofascial syndrome and referred me to pelvic floor physical therapy. I start pelvic floor physiotherapy, only my internal obturator muscle is tense, I insist to the physiotherapist that my pain is perineal (not deep) but she insists on treating me and I do not notice any improvement after 7 sessions.

- April 2020: After ejaculating twice, I am going to defecate and a very sudden neuropathic irritation occurs that causes chronic pelvic pain. I enter into a severe anxiety situation during confinement that only aggravates my problem. I go again to several doctors and physical therapists (botox does not work), nothing improves. New symptoms appear, such as ejaculatory and defecating pain, in addition to aggravating the previous ones. The perineum feels tight, shortened and smaller. The pain feels like there are "guitar strings."

- 2021 and 2002: I spend most of these years in bed, unable to do much of anything. The pain is only moderately relieved by clonazepam. Currently I live without erogenous sensations in the penis, with defecation pain and an anxious-depressive picture.

Other data: I have never had urinary problems, I have visited about 10 urologists and the prostate is always fine. My problem seems to be clearly in the perineal area. There are no strong and flexible muscles. I never have erections during the day and if there are, they manifest as burning in the penis.
Should I repeat a study? any suggestion?

[benraycamp0]

Sorry you are going through all this.

Some questions for you:
1. Does your pain exacerbate while sitting?
2. Have you tried ED pills like daily Tadalafil 5mg?

Your symptoms definitely could align with pudendal nerve entrapment - have you considered a consultation with Dr. Renaud Bollens in Belgium? He does pudendal nerve release surgery via laparoscopy which has good results and is minimally invasive.
I believe he does do remote consultations, so it might be a consideration to speak to him about your case.

He has a very informative video breakdown of pudendal pathology, highly recommend watching it: https://www.youtube.com/watch?v=YMcu048TiOM

[Violet M]

The last treatment and diagnostics you listed were in 2019. Your pain got worse in April 2020. Have you had any treatments/diagnostics since then? Since you are spending so much time in bed it seems worth it to pursue more diagnostics and treatment from a doctor who specializes in pudendal neuralgia. Were any of the urologists you saw PN experts?

Here is a link to up-to-date publication that gives a good overview of diagnostics and treatments to pursue, as well as an excellent summary of the Nantes criteria for determining whether you have a possible pudendal nerve entrapment. https://www.ncbi.nlm.nih.gov/books/NBK5 ... e-42038.s9

Violet