Health Organization for Pudendal Education

Hi
I am new to this site as I am reaching out for answers, in 2000/2001 I hurt myself at work somehow ? there was pain in my tail bone like pins and needles, I had a hard time sitting down,I had erection problems, I had lower back pain, left inside leg pain down to the big toe. My erections where not comfortable and at that time it hurt to ejaculate, it also hurt to pee and the top of my buttoc's was sore.

I had a MRI done and was told there was nothing wrong, after seeing a few different doctors I gave up and got a pair of orthotics and a boot lift as I was told that I had one leg shorter then the other from a car accident I was in. The orthtics and boot lift helped me to a point and I thought I was on the right track but I never fully recovered, at the time it was just a bit more comfortable to wear the boot that was made for me.

In the past few years my symptoms have been getting worse, my lower back hurts more I have pain down the inside of my left leg, the top of my buttocs hurts and I am going numb in my penis, I have numbness, lost of sensation, its hard to sit at times. The pain graually increases durning the day and it is worst at night. I have also been getting a burning sensation in my sattle area.

I now have numbness in my penis, I have bladder problem: dribbling, difficulty to detect the feeling of urine when passing through the uretha; need to push to empty bladder, it does not feel that I can empty my bladder. Sexual problems; diminution of sensations, impotence, pain before ejaculation. I just found out that I have a L5-S1 disk herniation and a disc bulge in the L4-L5, could this be causing my symptoms ? I was told no !!!

I have a moderate bulging disc in that same area and was told it would not affect the pudendal nerve distrubution. I think the PN is generated at the S2-4 level.

cari

It sounds like you have the "saddle anesthesia" that occurs with cauda equina. Doesn't sound like it is an emergency since you had an MRI but you might want to do some reading about the syndrome and there is a forum that you could also reach out there to pick some brains also. If you symptoms are rapidly getting worse you should call your dr.

My PN started with saddle numbness, which has since progressed into pain. I did go to the ER for MRI to rule out cauda equina. Can present with such similar symptoms!

You sound so much like me it's not true.

Two thoughts.

1. You leg length imbalance could have caused Sacroilliac Dysfunction. You should get a standing x-ray which will show if your sacrum is out of alignment. A GOOD Chiropractor or Osteopath could help as long as they don't go overboard. If the SIJ is in the wrong position it will irritate the pudendal nerve.

2. L5S1 is linked to the Sciatic Nerve which controls the Piraformis Muscle which can pinch the Pudendal Nerve. Get someone to check your Piraformis.

Hi,
You sound also very similar to me. I have had a nightmare for almost 10 years. To cut a long story short it started around ten years ago and i originally went to about 5 different urologists and had numerous horrible tests and nothing was serious was found. I was diagnosed as having Prostatitus. After the most horrific 8 years and many many trip to doctors practically begging them for help i started reading myself and looking for answers. I realised i had a really bad back injury around the same time my symptoms started and my GP had never set me for a MRI!!! I told my urologist and GP that i think they may be a link and i was sent for a Scan.

It was found that i have i think spondylosis of L5/S1 with the two vertebrae badly shifted out of line and pushing into the right nerve canal slightly. I also have herniation at L4/L5 and L3/L4 and slight herniation at T10/T12.

I suffer with obvious pain in the lower back, pain down right leg into the back of my ankle, pain in the bum area and pain in my hips. This is horrible pain, however, the worst pain is in my stomach and oblique area and most of all in my penis shaft. My penis aches and throbs and actually seems to spasm all the time, often feeling hard when flacid. I also have problems with urinating and my bowels. The penis pain and stomach pain is getting more and more constant and becoming a real problem. After years of such pain i finally lost my job last year after 10 years of hard work to become Production Manager. It has affected my considerably and really gets me down. I have visited a top spine surgeon in Leeds who claimed he can explain all my symptoms but is confused about the pain in my penis. However, i am convinced that the pain is linked somehow, i can feel it linked. My penis pain is mostly on the right as is my other pains and my right side nerve canal is affected by my back?

I am tired of been passed around and around and nobody seems to give me a straight answer. My pain is so bad i can hardly do anything. My pain is linked together in the sense that when i do anything which involves movement twisting or pulling on my pelvic floor all my pains get worse together. I also find that my Piriformis muscle is very tight and hurts if i try to stretch it. I am not 100% sure but i think my Pudendal Nerve may be trapped or damaged. I would love to get some answers and more so help and try to get some life back.

So as far as your question goes i think that your Penis pain could well be linked with your spine injury. I have also had a private message on Med Help after a long thread explaining my pain and history. It was a guy living in Sydney and his story was scarily close to mine. He also had disc problems at L5/S1 and L4/L5 and he was also experiencing pain in his Penis shaft. He too is suffering so bad he lost his job last year after 8 1/2 years as a supervisor and he was also 35 years old as i am. I feel for you and totally understand your pain and frustration my friend and wish you the best and hope things get better for you and all the other poor sufferers on this site.

Take Care

I actually have symptoms very similar to yours. I had pudendal entrapment which was surgically repaired. That pain is gone. Now I'm learning that I have L-5, S1 moderate stenosis and L4,L5 severe stenosis. My symptoms were very mixed like yours are. The rectal pain and some of the other pelvic pain that I had was caused by PN. The vulva, leg weakness and pain down to my foot are on the same side as the PN, but I found out after my PN surgery and subsequent epidurals in my back, that the other pain was from my back. I also have urine incontinence which is steadly getting worse. I had hoped that all of it would clear up with the PN surgery but it looks like I'm in for more surgery.

I have wondered if there was some link between the two problems. I do think that I had damage to both my vertabra and the pudendal nerve during my first pregnancy and then further damage with a bike accident.

For me, the answer was to find someone that could take care of the PN problems then address the back.

Hi Tiny Dancer,

I am very sorry to hear about your problemsd.

I too thinki have a problem with my Puydendal Nerve. I am not sure if it is my muscle spasm in my Pelvis which is trapping the nerve or my spine injury. I know my pelvic floor muscles are in spasm, particularly my piriformis muscle.

The problem is i often feel a link between all my pains. For example when i do any activity which involves moving, bending or twisting my pelvis my lower back begins to hurt which is related to my back injury. But my pelvic floor, hips, bum, leg and penis also hurt at the same time and are irratated by the same thing. They seem to go together. another strange thing is that my back injury is pretruding the nerve canal on the right side and all my pain seems more focused on the right side of my body including my pain in my penis.

The problem i have is trying to get any doctor to understand the relationship. I am not having any luck finding any doctor who can give me an answer regarding my pudendal nerve. I am on a waiting list to see Dr Barinowski in London, who is supposed to be a specialist in this area, but have been waiting for months already!!

Sorry and i would like to add all of my symptoms are made much worse with prolonged sitting.

Strats,

I'm sorry that you have to wait so long for pain relief, how long would you have to wait for surgery after the consultation.

Don't give up hope. Do you have a pain manager? They have a lot that they can do besides just narcotics. Will I am waiting for I'm not sure what...maybe surgery, I can have the steriod epidural and it takes away all of the pain for a month. It's crazy but I have very deep uterine pain that is caused by my back. One shot and it's gone. Just as I begin to think that the pain will be gone for ever...it's a month and I've lost my slipper because it's midnight. In other words, I feel like Cinderella and I have to go home from the ball in pain.

But you can only have three of them a year. Also you can develop cysts from them so it's not a fix.

I hope you get some relief soon.

Kate