Health Organization for Pudendal Education

As way of background, I'm a male in my 60s, retired and living in a small isolated rural town in Florida. I will state my symptoms first and afterwards detail events that led to my current state of pain.

Pain occurs in my whole pelvic area: scrotum, perineum, penis, rectum. From waking to bedtime.
Sometimes the pain is sharp. Always there is neuropathy there and discomfort predominantly on the left side. It progresses with the day.

Sitting brings it on - I avoid it at all costs and only engage in it when having to drive.
Standing too long in one spot also is problematic on my back and scrotum.
I need to sleep on my left side with a pillow between my legs.
Any pressing on my waist e.g. pants, underwear causes discomfort to my abdomen
Digestive pain - after antibiotics given by the first urologist, who gave me IV antibiotics, cipro and Levaquin. He never checked for a bacterial infection... so these powerful antibiotics just destroyed my gut for no reason
very bad lumbar pain - note I have degenerative disc disease and have known that for 20 years this pain seems to be driven by the pelvis.
incontinence urinary - many times I have to use my abdominal muscles to push urine out… it's worst if not fully hydrated
sphincter control -
painful ejaculation since first having the symptoms. Have given that up so not a current problem
Soreness dictates when I need to urinate
most comfortable not wearing clothes - just shirt/bathrobe, standing or walking.
Pain usually worse after meal (the bigger meal the worse)
Compressed gas
Urination urge one or times a night interrupting sleep

History:
Serious daily long distance cyclist with racing bike. Also had a sports motorcycles. Power lifter when younger. Grew my own organic food, so lots of gardening, digging, planting.


Problem was a nagging issue associated with ejaculation, seemingly rubbing against what turned out to be a cyst along seminal duct (Sept-Nov 2020). Escalated to being extremely painful culminating on Christmas day 12/25/20
12/25/20 and had to go to emergency room. There I was told to see first (local) urologist . He put me on antibiotics via IV, then Cipro and then Levaquin - no proof of bacterial infection. It turned out I never had one.
1/1/21 - emergency/ambulance went into anaphylactic shock from prescribed Finasteride. Turns out I'm allergic to sulfa drugs.
2/21/21? - went to 2nd urologist associated with Cleveland Clinic- He wanted to just enlarge the opening of my prostate. On second visit he tried to force a cystoscope down my shaft and caused tremendous pain. This escalated pain for me in general that never left. In particular ejaculation became even more painful. He told me to get a special MRI for the prostate, which showed a rare congenital cyst as well as the likelihood of cancer. He directed me to another doctor for a biopsy.
4/1/21 Third urologist does biopsy, confirms cancer in the prostate and drains cyst.
6/1/21 Got him to drain the cyst again through rectum, thinking this was the cause of pain. The injection he gave me through the rectum cleared my pain for a day.
8/1/ Decided to go to Houston for surgery at MDAnderson. They took another biopsy because they thought the first biopsy wasn't clear. Sitting starting to get more difficult
10/21 prostate removed by robotic surgery by fourth urologist. After surgery in a lot of pain for a week.
11/1 - catheter taken out by nurse while there and I got sepsis 40 minutes after. Landed up in the emergency room they put a new catheter back in
11/9/21 - catheter taken out by PA... and I fly back home
1/12/22 - see fourth urologist due to incontinence. Also had a tele-visit with Surgeon. Both said very odd that I suddenly get incontinence when I wasn't having it before.
2/1/22 Fifth urologist uses anesthesia to do a cystoscopy and finds nothing wrong. Checked my scrotum for cancer and he verbally said, nothing wrong there.
2/8/22 Fifth urologist says he believes I have pudendal nerve entrapment.

Other than the urologists and my PCP. I've had video conferences with a Pain Medicine doctors at U of Miami and U of Texas (MDAnderson). The first doctor prescribed Gabapentin (a low dose), the second switched me to Pregabalin which helps a bit but have needed to increase dosage.

I have been researching doctors to see and am at a loss of finding anyone in Florida that I'd feel confident in. In the mean time trying to deal with the pain which seems to be increasing. I'm of two minds now... (1) just living with the pain (2) seeing someone that can at least figure out what it is I have. Any suggestions would be welcome.

H Bkale,

Have you been able to see a pelvic pain specialist or PT? Tracy Sher is a PT with expertise in pelvic pain and ON and she is located in the Orlando area. Could you get to her office for an evaluation, if not treatment?

With your symptoms and a history of cycling, issues with the PN should be considered.

Have you had MRIs of your pelvis/sacrum/tailbone and lumbar spine? I would want to rule in or out issues like dusc bulges, annular tears, Tarlov Cysts, and tethered spinal cord. I have found that often you need to ask radiologists or other doctors directly about these conditions because many consider them incidental findings and don’t include them in the radiology report. Imaging also might help identify scar tissue that could be contributing.

Did your pain worsen after the prostate surgery? Have you seen a pelvic floor PT?

I’m sorry you are dealing with this, I understand how horrendous it is.

Stephanies

Am seeing a PT tomorrow who is a pelvic floor specialist. She says she treats PN and had treated me before for Pelvic Floor Disorder. About a 45 minute drive away... was weighing the drive vs the treatment. I have some some prescribed opio...s I can take to deal with the driving pain.

The prostate surgery plus sepsis and on top that they tore a hole in my bladder that took 10 days at MDAnderson's hospital to heal. After that I was recuperating back home and was better (no incontinence) until 6 weeks later.

Had MRI of lumbar and CT scan with contrast of pelvis done. Didn't find anything unexpected. Have not had sacrum MRI. What kind of doctor would look at the things you mentioned?

Bkale,

A pelvic MRI would show anything going on at the lower part of the spine where the PN originates, but I don’t think a CT shows as much. A lumbar MRI should show any disc issues or tethered spinal cord. I found I needed to get multiple opinions from knowledgeable doctors on my imaging. How did your PT appointment go?

I had to cancel my PT appointment as I was in way too much pain to drive the 45 miles there. I'm going to call to reschedule in a few weeks. Fortunately she has worked on me before and was understanding of my plight.
Would you request an MRI done with a particular protocol e.g. MRN? My PT person recommended a practice 70 miles away https://www.pelvicrehabilitation.com/lo ... -beach-fl/. There is only one doctor there, a physiatrist named Sandra Sandhu-Restaino. She spoke to me on the phone herself for a few minutes and said any imaging done would solely rely on the radiologists report. She would not look at the images herself. The consult would be an hour and 20 minutes. My thinking is, even if she isn't a world-class physiatrist she can order non-invasive tests that can give me an idea of what I have, like the MRI.
My other alternative is waiting for my tele-visit with a new PM doctor from MDAnderson. Not sure Pain Medicine is the right doctor to order the imaging I want. Also not sure my PCP can order the right protocoled MRI for the sacrum. What kind of doctors did you see that actually looked at the MRI images themselves? The only ones I've seen do that were the surgeons regarding my prostate.

Hello Bkale,
My husband is suffering from similar symptoms as yours but probably with less pain.
how to distinguish between Pudendal neuralgia and piriformis syndrome ?
He is also cycling a lot and I am a bit concerned about it.
have you made a direct link between long distance riding and your current condition?
Lauren

Hi Lauren,

I am hoping for a more definitive diagnoses after my teleconference with Dr. Conway in a matter of weeks. My urologist diagnosed me with Pudendal Nerve Entrapment, that being said, he is not an expert in the field. My own research is what led me to consider that he is likely right. However, have not had the nerve block done yet. Also, even if Conway agrees with my urologist, according to the experts (Conway, Hibner, Antolak), there is no way to definitely know that without a surgical operation. I have not researched "piriformis syndrome" but I don't have sciatica. Will update my story after hearing what Conway thinks. At this point I stay away from any activity that inflames the nerve. Sold my bikes, don't sit, don't do physical therapy. Here's an in depth article on it http://pudendalnerve.org/articles/Chron ... 0Basis.pdf

Thanks BKale for your feed-back and the link to the medical paper. The surgery always scares me a bit.
I hope your diagnoses will be soon confirmed and that you'll be able to find a way out from the pain .
After more research for my husband, i found that article:
https://iacesporto.org/prevent-pudendal ... in-cycling
I'll see with him if he wants to try a different bike seat. If the pain disappears I'll be so happy.
But if it continues, I might ask him to take appointment with Dr. Conway to take more radical measures.
Please keep us updated on your progress
Lauren