I would love some help.

[neopeius]

Hello. I am 39, male, and suffering from.. something.

I used to get horrible momentary pain in the perineum when jumping down from a height. That seems to be a common symptom for people with my problem.

In 2009, I was in very good shape having been working out for a couple of years. I was carrying my 5-year old daughter around Japan on my back for miles. At the end of the day, I felt an itching, then a burning pain in my perineum that was debilitating. It lasted a couple of days, and only ice packs helped. It continued more mildly for a couple of weeks and then went away.

It returned if I tried walking and carrying a heavy weight. So I stopped doing that.

Early this August (so about 3 months ago), I was sitting at my desk when I sneezed. I felt a ripping pain in my crotch, and the feeling I had in Japan came back. I figured it'd go away if I stayed off it, as had worked so many times before. Instead, it got worse. By early September, the pain was radiating to my testicles and shooting down the back of my thighs. Contrary to before, instead of sitting making things better, it made things worse. Standing/walking did not trigger it.

My job was a 8-hour a day sit-a-thon, preceded and followed by an hour of sitting in a car. I'm sure that didn't help.

Anyway, I got a donut and a knee chair, and those help, but I'm not healing. I'm fine unless I sit. If I sit, it feels like someone punched me in the perineum and left a bruise.

I don't have incontinence problems. I don't have ejaculation problems. Since I stopped sitting regularly, the testicular pain has pretty much gone away, and I just hurt in the perineum. It tingles when I get up, feels a little pinched, but it's no big deal, but after sitting, ouch!

No hernia. Been treated with a couple of antibiotic courses. No prostatitis. No testicular anomalies. I do have bad posture and occasional lower back pain. I'm working on the former, but I can't sit, so I only am straight when I stand.

It was recommended I do the pain blocks, but those are expensive, and I worry that isn't actually treating the problem, just masking it.

I know other folks have these symptoms from looking around on line, but very frustratingly, they post their symptoms and disappear without saying what their diagnosis or treatment has been.

So, help me, please. What is this? Do you have this? Has anything worked for you? Thank you.

[Ray P.]

Hi
You can call me before 7pm PST if you want some info.

Ray
707 526 9369

[neopeius]

I'm afraid I have no way of doing so.. I am in Japan for the next three weeks. Partly for therapeutic reasons--lots of exercise and standing

I'm sure others would like to hear you share your knowledge, too, if you're willing.

[neopeius]

I think I understand why so few post their success stories. You come here looking for support and hope when you're feeling down. If/when you recover, the last thing you want to do is talk about your problem, especially since a component is mental (and thinking about it). You just want the period behind you.

So I will definitely try to keep you updated on my progress.. but I also recognize my human frailties. If I disappear with nary a word, it's because I got better... or got hit by a bus.

[nyt]

You might want to find a good pelvic floor PT for an evaluation and a chiropractor. It is always good to check out pelvic and spine alignment issues plus tight pelvic floor muscles. Not sure about pelvic floor PT in Japan but I would think there would be a chiropractor. Might want to take advantage of some oriental therapies while there such as acupuncture.

Keep us posted.

[bikelover]

Hello friend. First of all, if its offers some comfort, you're not alone. I'm 36, father of 3. I understand your frustration. I suffer from PN symptoms very similar as you, but in my perineum and rectum, somewhat more pronounced in my left button than my right. Same as you, my main trigger is sitting or jogging. For me it started with a little motorcycle detour that made me slam my butt against the seat somewhat hard. According to the local docs, I have it bilateral. Worst times I've had is overall soreness in my butt and anal sphincter, like some one kicked me hard 20 or so times, and that "golf ball up my arse" feeling.
I've tired PT, prolotherapy, NSAIDS, trigger point therapy, combo of antiepileptic and antidepressant drugs. I've tried to be over preventive, managed to setup my desk at work so I'm standing most of the time. Nothing has provided any real relief. I've bought a Tens unit and use it daily. It does helps with the additional muscle spasms and symptoms that I think are also a result of the affected P nerves. I have 2 cushions, residing permanently at my car, in my office chair, and I bought the very expensive but more portable cushion for cushionyourassets.com that I, or my wife takes on her purse when we go out to dinner, church, etc.
Besides all this, I'm fortunate in that as long as I don't sit without a cushion, or for a prolonged time, my symptoms, although inconvenient and uncomfortable, are not intolerable. I don't have incontinence problems, I don't have sexual issues either. I actually stopped taking drugs because those were making me dizzy and brought performance problems as well. I do regret that I'm not able to run my daily 6 kms anymore. I've gained some weight, try to stay fit by doing some other excercises, but I miss the cardio, and walking, although nice, is not enough to keep me in shape. What I do miss a lot, is riding my bike. I've gave up lots of things for my family without any regret, I'm really thankful to the Lord for giving me such a beautiful family. But motorcycling was one of the few things that I really enjoyed as a personal hobby. I used to ride with all my best friends, take long rides on sunday. Now I just watch their videos on youtube and drool, lol...
I'm currently planning a trip to Houston to do a Neurography and block to at least get a more precise diagnostic, and if its really entrapment. I don't have any local options. If its entrapment, next step will probably be Pulse Radio Frecuency ablation, which I know of a local option for such treatment. If that doesn't work, I will seriously consider surgery, as I'm still young and don't plan on beign like this for the rest of my life.

I'll be more than glad to share any details, etc. Try to keep a positive attitude...it does help.

[neopeius]

Thank you. My hope is that because my symptoms are not very severe that I will heal. It's strange how the discomfort will travel. Sometimes it is in my perineum, sometimes in my scrotum, and tonight, it is in the juncture of my legs and groin. It itches in my scrotum. Has this happened to you (or anyone)?

I'm really not sure who I should go to for diagnosis. I got referred to a guy who does blocks, but that seems like a racket. $2000? No thanks.

[bikelover]

Not really, but an itch in those parts can be due to a lot of things, including yeast, fungus, etc. What makes you think the itch could be related to the PN?
Besides the pain, I used to get a lot of muscle spasms, tingling, sting/needle sensations but now that I used the Tens unit daily, those have ceased quite a bit, so its mostly pain while I sit on my buttock, mostly on the left, and just inside of my sitbones, and the object in my rectum feeling when I overdo something, like squatting, etc.

[neopeius]

That's totally different from my symptoms. The itching often precedes pain (and I once understood pain to be minor irritation of pain sensors, but the conventional wisdom is changing).

The past couple of days, I've felt like I had to pee all the time despite not having to pee. I wonder if it's related or if I picked up a UTI.

Heck, what if this whole thing is a bacteria-resistant UTI? To whom should I go to find out?

[nyt]

Your GP can do a urine culture to determine if it is an UTI. If you have an urologist that is someone else.