Not sure if I have PN or something else

[jthomure]

In 2002 my pain began after an ejaculation in which one of my groin muscles on my right side spasmed. At first, my right testicle did not feel quite right, went to the doctur, took antibiotics, helped for the time being. I have swelling in the groin/testicles. Slowly, over the last two years, the pain worsened and my ability to do activities (cycling, running, and eventually walking) without aggravating the pain occured. Mostly I get a burning feeling in the right testicle and above the testicle inside. Lately, my left testicle started aching after lifting something and feeling a twinch in the groin. Also, I've recently been getting an intermitent tingling senstation in the groin and testicles (pudendal nerve?), as well as in my right leg (sciatic nerve?). A few months ago, my lower back starting hurting. Also, my left testicle hurts sometimes when sitting. I've seen a lot of doctors and they are no help and can not diagnose what is wrong. Done PT twice. Seen uroligists, a general surgeon, and a sports medicine doctor. Does anyone else have symptoms like this? Please let me know, I'm trying to figure out if it could be PN or something else. Thanks.

[Violet M]

You probably need more information from some of the experts before you can say if you have PN. Did the PT's you saw specialize in this illness?

[jthomure]

No. It seems next to impossible to find anyone that is familiar with PN. Thanks for the reply.

[donstore]

JT,
My first pain onset was post ejaculation and is now aggravated by that and sitting. It is is in the scrotum and perineum. These are areas inverated by the pudendal nerve. I think the testicles are inverated by a different nerve. Look at Dr. Hibner's 2010 paper on this site and see if the symptoms he describes ring a bell. Most doctors have no idea about PN. You have to seek out and travel to see the experts for diagnosis. If you can educate your local doc, they can be useful for prescriptions and referrals.

[drds89]

Hi,
IMHO, you should be evaluated for PN. Although not 'classic' or common symptoms you mention, one of the first case reports someone gave to me to read on this condition involved a medical student with orchalgia (testicular pain), who subsequently had testing/surgery with excellent results. They found a flattened pudendal nerve in alcock's canal. Later he developed symptoms on the other side, and went quickly to surgery with hasty resolution of symptoms. He was later able to resume and finish medical school.

http://www.ncbi.nlm.nih.gov/pubmed/12820792

Regards,

Don

[steve526]

I'm in a very similar situation.
Same kind of triggering event,
same duration,
some of the same symptoms,
same loss as knowing what to do about it.

10 years ago, while ejaculating, I felt a tearing in my groin on the left side.
Next day my pelvic floor muscles were inflamed and tight.
Too embarrassed about the situation I didn't go see a doctor at the time and decided to tough it out (idiot).
After a few weeks things had calmed down and I thought I was ok.
Then while slouching in my chair at work I got a sudden shock of pain in my left sit bone area.
It was like I had been poked with a cattle prod - a sensation of impact together with an electric shock.

The immediate problem after that was an inability to sit.
As soon as I sat down, I could feel the muscles in my pelvic floor ratcheting uncontrollably tighter and tighter.
I began having terrible cramping problems during and after defecating.
I'd feel like I'd been kicked in the left testicle, I'd have a deep general ache in my groin.
Within the past 5 years I began having back problems to, as the muscles of my pelvic floor and my back began playing tug of war.

PT never helped me.
Anti-inflamatories definitely help.
Not sitting down is the main way I cope. I don't have any kind of social life.
I also use a wedge shaped cushion with a large hole cut out of the center like the 'thera seat' .

If I sit on a bad chair I don't feel the immediate ratcheting feeling I used to when I first had the injury but sitting still causes problems. A few hours of sitting and the next day I almost always start having back pain, testicle ache, and cramping problems when going to the bathroom.

The concept of PNE is something I recently discovered myself surfing the net. My doctor is unfamiliar with it. None of the previous doctors I've seen ever mentioned it.
Sometimes I wonder if this is could be some kind of hernia problem, since lately I've noticed lifting also aggravates my condition - and the tearing feeling I felt in my groin way back when felt exactly like the time I herniated a carpal tendon in my wrist.

[donstore]

Steve,
A lot of people talk about PN being aggravated by lifting. PNE is often compared to compression of the carpal nerve in the hand. Surgery to decompress that nerve is fairly common. Sitting pain is the the pre-dominant symptom of PN. Most doctors don't know about PN cause it is so rare (at least as a diagnosis) which is too bad for us. You will know more about PN by spending a month or two on this site or TIPNA than most doctors will know in a lifetime of practice. You need to seek out the experts and most likely travel. It's not easy. Don't give up hope but you really need to push hard to have a shot at figuring out this one. Good luck.

Don