New Member--Looking for some direction; possible PN.

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New Member--Looking for some direction; possible PN.

Postby jimstev » Tue Dec 26, 2017 7:07 pm

Hi,
I'm glad I found this site. I'll try to be concise (though I often fail at that), I am just looking for advice/direction from anyone who may have been down a similar path as I.

57 year old Male. My symptoms have been going on for about 9 years and have been to no less than 23 different specialists, some several times some just once.

Anyway, the symptom I noticed most profoundly was a complete and immediate loss of sexual interest just after an exercise session preceded by a bike ride (I don't recall noticing anything just after the bike ride though). It was more than bizarre to have absolutely zero sexual interest at all--and this is literally within moments of me thinking, while exercising, how I hoped I could convince my wife to have sex with me right after I was done (after a shower, of course).

It was the feeling one might get if you're holding, say, and expensive fragile vase or something, and you drop it--it shatters--and you know that is gone forever and there is no fixing it. I sat down for about 15 minutes in sort of a terrified daze thinking this is the strangest feeling I've ever had. I hoped the feeling would come back--but deep down somehow I knew it wouldn't--like the shattered vase that can never be repaired.

I also noticed that I had "thrown my back out"--where I was unable to stand straight without walking for several steps and finally straightening up, and I also had the lower back pain that goes along with that. (Some history--I'd had two herniated discs in the past--both surgically fixed with a microlaminectomy L4/L5 & L5/S1--and "throwing my back out was something I was used to about twice a year--so that part was fairly normal--but it always went away after 2 days or so).

There were two differences with this "throwing my back out" episode: first, that night and over the next week or so, I had terrible spasms in my left testicle, they died down after a week. But my back had always recovered after two days or so in the past, but this time it took over 5 weeks before I could really stand straight upon first standing up. That made me think the instant and complete loss of libido was some nerve that was severed by my vertebrae pinching it. So the medical path I went down focused on my back and groin.

I was left with the odd combination of persistent left-testicle pain, general perineal pain, but with a cold and numb scrotum, and though I could walk upright, I also had persistent lower back ache. It was fully 6 months before I even attempted to have sex with my wife--and this was only after she noticed my "3-day cycle" was somehow gone. There were of course subtle accusations of "another woman", etc, but I simply had zero interest at all, not even in masturbating. So it turns out, since the incident--ejaculation causes a strange, painful electric-shock feeling in my thighs. Sex is extremely difficult to get even 1/2 erect, and it is unsatisfying except that it does release what I only feel as a vague pressure buildup about every 4 months. Viagra actually does help, but whatever it does to blood flow in the penis it does 10 times that in my head and the headache that accompanies taking just one pill is so severe and debilitating that I need to take a day off work afterwards--it's worse than my worst hangover ever. But it is the only thing that has kept my wife from bolting over the last 9 years.

So after 9 years and several testicular, kidney, and bladder ultrasounds, four MRIs, an epidediotomy (one urologist said the vasectomy I'd had 20 years ago had a lot of calcium buildup and was making things crowded in there--which it was, so the excess tubing was removed), a double-vertebrae fusion (which actually did stop the lower back pain, so that was not in vain), various temporary nerve block tests, a testicular denervation surgery I had scheduled (but I canceled last minute due to thinking this would only stop the pain symptom but have no chance of restoring libido), and countless other tests involving electrodes, x-rays, CAT scan's, etc, and I'm still left as a guy who has zero libido and the bizarre taser feeling in my thighs upon ejaculation, and still persistent left testicular pain and perineal pain. Not sure if this other symptom matters--but this feeling was so profound and all-encompassing that I also lost all interest in my hobbies. And that wasn't due to depression--it was an instant feeling that I not only wasn't interested in sex anymore, I really no longer cared for photography (I had some nice cameras & lenses which I sold within months because I had no interest in getting up at 5 AM to catch the sunrise--which used to be a regular thing for me). Again--this was not something that gradually occurred over years, months, days, or even hours--it was in an instant that this change happened.

So, sorry I wasn't as concise as I'd hoped, but does anyone have any suggestions or recommendations of a doctor who has dealt with this specific set of symptoms before?
Thank you very much.
James
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Re: New Member--Looking for some direction; possible PN.

Postby raising4girls » Tue Dec 26, 2017 11:51 pm

James - wow, you and I have some things in common....post-vasectomy treatment, perineal and scrotal pain, etc. I'm brand new here and just starting to explore therapies to the pudendal nerve and its branches for my perineal pain. I've bounced back and forth between scrotal and perineal pain like a cruel game of whack-a-mole.

I'm off work this Thursday and Friday if you'd like to catch up off line or via phone. I think my email address is in my profile. Sounds like comparing notes might be helpful to each of us.

Scott
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Re: New Member--Looking for some direction; possible PN.

Postby Violet M » Wed Dec 27, 2017 12:38 am

Hi James,

One of the possible symptoms of pudendal neuralgia is decreased libido associated with painful sex or loss of sensation. I have not heard it described to be as sudden as you described but I will say that some of my symptoms developed suddenly, although I had some mild symptoms prior to that. The symptoms shattered any joy I had in life and it was all I could do to try to will myself to live until my son's high school graduation.

I'm sorry about your wife not being entirely understanding. People react in different ways when a spouse develops health problems. I don't know if it would help her to read a letter for family and friends that was posted awhile back on the forum. viewtopic.php?f=12&t=5254
Even though you have no interest in sex yourself, you can still do things to make her feel good and to make her feel loved. Obviously it will take more effort on your part but if you want to save your marriage, you might have to go that extra mile. Sometimes when people like us are in pain, we forget the fact that our loved ones are also going through pain -- a different kind of pain to be sure, but still we need to do our best to let them know we are still there for them too.

It's true that the symptoms associated with PN can have a huge emotional impact on your life but that should not be confused with "it's all in your head." I don't believe it is ever an all or nothing proposition -- that it's all in your head, or it's purely physical and it doesn't affect your mind at all. The two go together. The other thing about PN is that it is often associated with other problems such as SI joint dysfunction, etc. Also, if you have a history of back problems that are clearly spinal radiculopathies, those have to be taken into account as the possible cause of your symptoms. I don't know if your previous back problems are responsible for your current symptoms or not. MRI's, PT evaluations, and nerve blocks might help sort that out. Are you able to get to a PN specialist for an opinion on what might be going on?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: New Member--Looking for some direction; possible PN.

Postby jimstev » Wed Dec 27, 2017 2:34 am

Thanks Scott and Violet for responding!

It really helps to know I'm not the only one going through this. Scott, I'll email you towards the end of the week, just winding down from Christmas now.
Violet, I'll read that letter and hopefully that will be of help.

I've never seen a specialist in PN, though I've been to at least three neurologists and nerve-pain specialists. I've found that the idiom "If you're a hammer, everything looks like a nail" to hold true for many doctors. Doctors, at least the ones I've been to, don't seem to have troubleshooting or diagnostic skills. I feel like so many doctors just have a cheat-sheet that says what drug to prescribe for what type of pain the patient is in. I need the (most likely unrealistic) situation you'd see on episodes of House--a team of experts actually using critical-thinking skills to diagnose and solve a problem.
Uggh, sorry to go down that negative road but that's what it's been for the last nine years or so.

So yes, a PN specialist will be my next move. I had asked several of the urologists I've seen over the years about "Alcock's canal" and PN, and they seemed to veer away from that, I don't know why. One said that I would have felt a significant amount of pain if any of those nerves got traumatized and that I likely would have had massive bruising were it a bike-seat injury. But the more I google I keep ending up with PN/PNE so that's why I'm here.
Thanks!
James
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Re: New Member--Looking for some direction; possible PN.

Postby jimstev » Wed Dec 27, 2017 4:36 pm

Violet,
I just noticed your sig line. I started doing The Firm Vol 1 back around 1988 after my first microlaminectomy--the surgeon said no more weights over 50 lb. and recommended aerobics. It was a great routine since toning and cardio was all I was looking for anyway. I did Vol 2 also, and alternated between those two along with running and biking. Then around 2005 I started "Turbo Jam/Sculpt". That routine has some deep plies (sp?) and lunges that make me wonder if any of those moves might have stretched things just a bit to far and tore something in the perineal area (the incident was in fall of 2008, so I'd been doing the new routine for a few years). I asked one doctor about the possibility that over-extending on a lunge or plie might be an issue and was again told that I would have likely felt something had that been the case. Plus people do the splits and can get very limber so I would think the nerves have some "slack". When this occurred, I really felt nothing physical and even the back pain wasn't that noticeable right away, but I felt no strain or over-stretching pain. But the suddenness of the loss of that core sexual feeling--both upstairs and downstairs--was truly the most bizarre and profound thing I've ever experienced.

I still do the Turbo Sculpt, but I modify it (just in case) to not go quite so deep on the plies and not stretch so much on the lunges, always keeping my back bolt upright.
James
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Re: New Member--Looking for some direction; possible PN.

Postby jimstev » Thu Dec 28, 2017 8:41 pm

Scott,
I sent you a PM, I couldn't find your email.

Violet,
I read that letter, thank you for giving me the link! It had a lot of great information that I hadn't known even with all the googling I've been doing. One of the items that I was curious about was the bit about stopping all the physical activities that may trigger the pain. As far as exercising, after this first occurred and before reading or knowing much about it, out of common sense I completely stopped exercising for five full months. There was zero change, so I gradually started exercising and biking--but like I'd said, I modified my routines so these already "low impact" aerobics were now "very low impact", there was still no change--no worse and no better--I don't notice any change at all whether I'm sedentary for months or exercising a couple times a week. The bike I use has one of those big padded seats, it's not a mountain-bike or racing bike, a "comfort bike" where I sit upright (but not recumbent).

The thing about the hot poker rang so true and it is perfect--that is the analogy I've uses before to tell close friends what I'm feeling--also that it feels like a light, steady pressure is on my left testicle--like a lightly-sprung clothespin clipped to it--not enough pressure to scream but enough to make things uncomfortable.

I'll keep searching for a specialist.
--James
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Re: New Member--Looking for some direction; possible PN.

Postby Violet M » Fri Dec 29, 2017 2:29 am

Hi James,

What got me into trouble in the first place was doing a weight-lifting program called Body for Life. Eventually I quit the program and basically stopped exercising for many months -- maybe about a year, but I didn't get any better. If you are a little nervous about seeing a PN physician specialist, maybe you could try seeing a PT for an evaluation. I was originally diagnosed by a knowledgeable PT when the docs didn't have a clue about the diagnosis.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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