Pudendal Neuralgia????

[Kam1975]

Hello - last February, I was undergoing a lot of stress at work and had pain in my penis and burning while urinating. The doctor at the time diagnosed me with prostatitis and put me on Cipro for 10 days. He also requisitioned a PSA test, a prostate ultrasound and a abdominal xray. Everything came back normal except constipation on the xray. By about 4th or 5th day, pain subsided and the doctor call me back to discuss the constipation. He gave me a strong laxative to alleviate the constipation. After I took the laxative, I don't ever recall being in that much pain, I was on the toilet with my abdominal muscles contracting and spasming, I could feel debilitating pain in my rectum, perineum, buttocks, testicles.. you name it, my pelvis was in debilitating pain. It was burning, debilitating pain. A week or go passed, and the pain subsided but never went away. I think this laxative episode is what exacerbated my problems or caused new ones.
Long story short, it has been a year this week, I have pain in the perineum, mild but it spikes with anxiety and stress. I have pain in the tailbone and buttocks and Sciatica like pain in the right buttock going down the leg. I was a very healthy individual, physically fit and active. I have seen a general surgeon for rectal issues such as fissures or rectal cancer, all normal. I have seen urologists who have told me that everything is normal... I have had cystoscopies, 5 MRIs, ultrasounds, xrays.
Cystoscopies - all normal
XRAYs - all normal
MRIs - labral tears in both hips. No abnormality seen along the pudendal nerve on all MRIs.
Ultrasounds - scrotal - one varicocele and small hydroceles.- all benign.
My current symptoms are pain with sitting in the buttocks, can't sit on hard surfaces without a cushion, the coccyx cushion doesn't help, the pain is indiscriminate. I can sit on a couch and drive without any sort of discomfort in the perineum but I can't sit on a bench or any hard surface.
burning at the tip of the penis with urination if I have been sitting for long otherwise no burning with urination.
pain between scrotum and inner thigh on the right side. Worse when sitting.
used to have severe perineum pain after bowel movements and narrow stools but stools are now normal and no or very minor pain after bowel movements.
Random tingling in the scrotum, sort of the tingling pins and needles feeling when your foot or arm falls asleep.
and the visible issue - really tight scrotum with the penis literally retracted into my pelvis with only the glans appearing. Worse when stressed or anxiety.
Also, when doing anything physical like shovelling snow or carrying anything remotely heavy, I can feel pain in the buttocks.
Does any of these sound like Pudendal Neuralgia? Or are any of these similar to what others are going through?
I am doing pelvic pain physio with one of the best pelvic pain physios in Toronto. She's actually recommended on this site. She is confident that there is no entrapment.
I have gone through multiple specialists but have gotten zero answers. My doctor is doing an MRI Arthrogram to see how severe the labral tears are. I've read that hip labral tears symptoms are similar to PN symptoms. Hoping someone can chime in and share thoughts or provide guidance as to who I should see.
Thanks for reading.
Kam

[Violet M]

Hi Kam,

If you are having pain in the distribution area of the pudendal nerve, which it sounds like you are, then yes, it is possible that you could have pudendal neuralgia (PN) but that doesn't mean you have an entrapment and it doesn't mean that it's your primary diagnosis. It could just mean the the pudendal nerve is irritated for some reason. Finding out why is the trick. Since labral tears can be associated with pudendal neuralgia then it would make sense to consider that as a possible cause of your possible pudendal nerve irritation.

To answer your question "are your symptoms similar to what other pudendal neuralgia patients go through?" the answer is yes but I have yet to hear of 2 people whose symptoms are exactly alike in every respect.

Violet

[Kam1975]

Hi Violet,
Thanks for your reply, grateful for your feedback. Unfortunately, Finding out how the two are linked is the challenge. I saw a rheaumatologist who basically dismissed the labral tears as nothing to be overly concerned about. I am afraid the medical community is very dismissive, if it doesn't fit within their area of expertise, they won't touch it. The rheumatologist looked it just from his area of expertise and said there's nothing for him to do here. Neurologist did EMGs and they also did an MRN which showed no abnormality seen along the pudendal nerve. I am awaiting an MRI Arthrogram that may shed more light on the tears but if a rheaumatologist is not willing to do anything, where do I go? Urologists have dismissed by saying there's nothing anatomically wrong with me.

Thanks,
Kamal

[Alan1646]

I'm very interested in this: "My current symptoms are pain with sitting in the buttocks, can't sit on hard surfaces without a cushion, the coccyx cushion doesn't help, the pain is indiscriminate. I can sit on a couch and drive without any sort of discomfort in the perineum but I can't sit on a bench or any hard surface."
Does this mean that you can sit on soft surfaces without pain? Or do you mean that you have much less pain when sitting on soft surfaces? When you drive, is it pain free?

[Kam1975]

Hi Alan,

I can sit pain free on soft surfaces. I am practically pain free when I sit on soft surfaces. It's the same when I drive. I have next to no pain when I drive. Painnworsens ifni have any anxiety or panic attack. That being said, the worst of my pain is when I am sitting on my coccyx and the bones parallel to the coccyx. And it's a burning sensation. When sitting on hard surfaces, pain worsens and it's through my buttocks and 1/2 way down the back of legs just before my knees.

[stephanies]

Pain in the buttocks and back of the legs can be from the posterior femoral cutaneous nerve. You may want to google an image that shows the innervation of this nerve. There is some overlap/communication between the PFCN and the PN.

Stephanies

[nonsequitur]

I was undergoing a lot of stress at work...Pain worsens if I have any anxiety or panic attack...it spikes with anxiety and stress

This is key information and may point to a somatoform pain syndrome. Especially the fact that your pain started during or shortly after a stressful period. Non-bacterial prostatitis is a somatoform pain syndrome.

http://emedicine.medscape.com/article/456165-clinical

Patients with abacterial prostatitis/chronic pelvic pain syndrome (CPPS; category III in the 1995 National Institutes of Health prostatitis classification system) have the same symptom complex as those with chronic bacterial prostatitis. The chief symptom reported by patients with abacterial prostatitis/CPPS is pain. Genitourinary symptoms include perineal, penile tip, testicular, rectal, lower abdominal, or back pain.
Patients can also have irritative or obstructive urologic symptoms such as frequency, urgency, dysuria, decreased force of the urinary stream, nocturia, and incontinence. Other symptoms are a clear urethral discharge, ejaculatory pain, hematospermia, and sexual dysfunction.

Many patients with abacterial prostatitis have emotional strife and some psychological difficulties (ie, socially, sexually, or both). Patients should be questioned with regard to their overall social adjustment. Stress level is important because stress is responsible for increased tension of the pelvic floor and the internal urinary sphincter, resulting in the symptoms of prostatitis.

[Kam1975]

Hi stephanies,

Thanks for the info. I'll look up that nerve. To be specific, my pain is prevalent when I am sort of slouched down on my butt. I guess what I am trying to say is that the pain comes when the body weight is on the area adjacent to the coccyx and sacrum. To give you a visual, say If the coccyx was the middle of a clock, my pain would be at 3 and 9 on the clock and the area inbetween, sort of a half circle. And at this point I can feel the pain even at the tip of the penis. I
Also have pain in the lower abdominal and pelvic region on the right side, basically where the hip bone is on the right side parallel to the Punic symphysis. The very same pain travels down into the right groin and I also hag pain in the anterior hip down to just above the knee. And this is on the right side. I just went in for a hip, lumbar spine and sacroiliac joints X-ray this afternoon. I am awaiting my appointment for an MRI arthrogram of the pelvis and the hip. I called the hospital today, they have the requisition but they are booking another 4-6 weeks out. Hoping the X-rays show something. Also, I had a lumbar spine MRI done in early December but nothing out of thr ordinary was noted. It may just be a peripheral nerve that's impinged.

[Kam1975]

Hi nonsequitur
I don't have pain with ejaculation or discharge or any of the symptoms you have mentioned. I don't have burning with peeing either. I am afraid my symptoms are all over the place so it's challenging pinning it down. My doctor's approach is to tackle each problem individually. I have a right sided varicocele which will be emobilized next week so hopefully it'll resolve part of the problem. Thanks for your advice and the informative links, that's more information than I have received from the medical community.

[dlprior]

Kam,
A lot of what you have gone thru sounds similar to me. 2 years ago I was working out and lifting....Started feeling the need to urinate frequently. I went to my doctor, ran tests and everything came back normal, referred to urologists, orthropedic and had mri's and x-rays. Treated for prostatitis although I did not have that. Was running from doctor to doctor for symptoms (all on my right side) that included lower back buttocks discomfort, pelvic discomfort, frequent urination, penis shaft aching, numbness/odd sensation at the tip of my penis, penis felt raw on the right side only etc etc.. Had difficulty sitting on hard surfaces for any period of time. Life pretty much came to a standstill for me. None of the drugs given to me helped at all (vicoden, gabapentin, low dose steroids etc.) Finally found a physical therapist that suggested that I see a specialist for pudendal nerve entrapment. Ended up seeing Dr. Mark Conway in NH who confirmed PN diagnosis. Had one injection to the sacroligament area but it did nothing. Then Dr. Conway referred me to see a pelvic floor therapist which has worked for me. She told me that she could tell that I had a tight pelvic floor as a result of the injured PN that was causing the feeling of needing to urinate frequently. She began internal work to help loosen the pelvic floor and had me start using a therawand so that I could do the same work at home. Slowly and over time my conditions improved to the point where all of my symptoms resolved to about 95%. It was a long process. I had been dealing with PN for about two years and over the course of six months while working with the therapist I saw gradual improvement. I understand what you are going through! PN really is awful. What's most frustrating is that nearly all doctors have no idea what it is or how to treat it. Hang in there!

My best- Dennis (Maine)