Health Organization for Pudendal Education

Hi. New to this site but it looks like what I may have been looking for. For the past 13 years (with a 3 year mysterious hibernation of symptoms) I've suffered from some pretty different symptoms. The most notable and miserable of these symptoms is a severe, tingling in my testicles (maybe just the scrotum). This is always accompanied by the testicles and scrotum adjusting and moving around. Either the movement causes the tingling or vice versa. I also have a noticeable bulging in my pelvic floor muscles. This bulge is most often prevelent when I have an erection, prior to a bowel movement, and when it is cold and my testicles are tight to my body. Its at its biggest right before ejaculation and can actually push my testicles far to their respective sides. I also get post ejaculation soreness and occasional post bowel movement pain. For years these were the only symptoms but recently I've also had other symptoms commonly associated with chronic pelvic pain syndrome. But I've been able to manage these new symptoms with a concerted effort to relax my muscles.

But the tingling is enough to drive me mad. I can soothe it with heat pads as they draw my testicles away from my body which greatly eases the tingling. Lyrica also helps but I just assume find a cure not a cover up. The tingling is worst when sitting, when i'm cold, nervous, immediately after I yawn and prior to having a bowel movement. Some days its not that bad and other days Its almost unbearable. Most urologists misdiagnosed or brushed it off. My most recent urologist from Harvard put me on the Lyrica but doesn't have many ideas other than that.

This all began about 13 years ago. At first I thought it happened because the night before it began I had unprotected sex with a college friend. Since I've tested negative for everything over the years its obviously not related to that. But the night before it started I was also lifting weights with a friend in his dormroom. We were lifting weights in his wooden chair while pushing the weights above our heads. It was too much weight for me but I did it anyway. I assume that maybe its all due to that. I plan on seeing a PT soon and then maybe a neurologist but I was curious if anybody on this site has had similar symptoms, especially the tingling. I assume the muscular bulge (spasms?) is related to the tingling and I figure a nerve in there somewhere is being negatively triggered. The fact that usually tingles the most when sitting seems to at least be similar to PNE. Like I stated earlier, the tingling went away for 3 years during a very good time in my life and came back last fall during a very stressful time. Not sure there is any relation but figured i'd add it.

Any information would be great. I started on the IC site, then the CPPS site and think I finally found my home. Looking forward to hearing from anybody out there.

Thanks.

Having symptoms of chronic pelvic pain syndrome after years of pelvic floor tension from a painful condition is kind of inevitable. But if your main symptoms for many years were testicular, the origin might be the nerves in the inguinal canal (I believe they are hypogastric, iliohypogastric, genitofemoral). A hint to that would be, if your symptoms can be reproduced / intensified by your health care practitioner sticking a finger into each inguinal canal as they do when screening for inguinal hernia.
Could be pudendal or something else, but with testicular pain it's a good idea to rule out the nerves in the inguinal canal first. They are easier to treat than pudendal so may as well have them checked.

Well thanks for your reply. I agree that pelvic problems are indeed inevitable after years of tensing the muscles. I'll use your other info as well and hopefully one of the professionals I plan on seeing can figure something out. However, I don't think all the poking and proding by myself and doctors over the years have ever triggered the tingling but I see your point.

P.S. how do you show where your from under your name? I'd like to add that but cant figure it out.

Elmwood,

User control panel, profile, location......

cari

Thanks Cari.

Sorry to hear about your condition and that your husband doesn't understand. Show him my original post if you want. Maybe seeing a mans misery will help him understand a bit better.

Hello Elmwood,

Any time there is tingling you have to suspect a nerve involvement but it is a bit of a trick figuring out which nerve and whether the nerve is the primary cause or it's just a victim of something else going on. Weightlifting is what got me so I can see how your weightlifting experience could have caused a problem.

When you have a bulge in the perineum is it actually visible or does it just feel like there's a bulge? It's sounds like it's something you can actually see but just wanted to clarify.

I think your plan to see a physical therapist is a good place to start -- especially one experienced with pudendal neuralgia. If you don't get some results pretty soon, then you have to start suspecting there's more going on than just tension in the pelvic floor.

If you can get a 3T MRI from one of the pudendal imaging experts mentioned on the forum that might be another thing to add to your list of things to do. Hollis Potter and Dr. Fillippi (spelling?) are two that have been recommended by other patients. Other people have gained good info from the MRN but some people have not. Anyway, I hope some guys will answer your questions too.

Violet

Hi Violet.

Thanks for your reply. The bulge in my perineum is definitely visisble. It doesn't look grotesque or bizarre and follows the normal muscular path from the base of the penis to the perineum. If somebody was to look at it they might not even know something was wrong especially since its not always present. But when its at its biggest before ejaculation it would be obvious to anybody that it shouldn't be that big. Its actually normal for that muscle to expand in men during erection but not to this extreme.

I'll go to the PT and see what happens. She's apparently very good and has been at it for years so hopefully she'll have seen my symptoms before. I was just hoping somebody on this site would be familiar with the tingling so I could at least get a better understanding of why its happening and how to treat it.

Well, I had tingling and I know a lot of PN patients who have, but I'm not a guy so that probably doesn't help answer your question!

I hope that physio helps, you may soon have some more answers as well as treatment, Let us know how it goes. Is it with anyone mentioned on the home page lists btw ?
Good luck.

Yeah its one of the recomended PT's in the Boston (U.S.) area that are on the site. She's supposed to be very good with lots of experience so we'll see. I let people know how it goes.