New member questions

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
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Corwin
Posts: 3
Joined: Sun Feb 03, 2019 6:34 am

New member questions

Post by Corwin »

Hi, I started back in March, with a prostate infection, took six weeks of Cipro, the swelling in the prostate, and presumably, the infection, went away, but the pain never did. The uro said, and I quote, "is not urological, pelvic pain", and that was that. I'll try to explain stuff as best I can, but will have to be somewhat brief, as I'm lying down, trying to type this on a tablet (ftr, I hate mobile tech, but sitting at the computer is no longer possible, or at least, not this moment). Later, had multiple PSAs, all normal, no sign of BPH either, but still the golfball in the rectum feeling.

While the prostate was infected, in trying to avoid sitting on it, and still be able to use the computer, I got a wireless keyboard, and moved the monitor next to the bed. This meant I either had to crank my neck sideways to see, or lie crossways on the bed, I chose the latter. This too was not ideal, since there was a space between the bed and the wall, I set two milk crates atop oneanother to fill it, and piled pillows on them for something to lean against. This worked for a few days I guess, though it was horribly uncomfortable, because my legs were still off the side, pillows under the knees, then something in my leg pulled, or cramped, or something, and the experiment ended.

At that point, and after the urological stuff came up negative, I figured I must have reinjured the disks in my back, from trying to contort myself sideways, I'd injured them when I was 21, and they'd periodically given me trouble over the years, so I decided to see a chiripractor. He got me out of quite a bit of pain, straightened out the pelvis, which helped a lot, and back, but still the PNE-esque (for lack of a better term, and the sake of brevity) symptoms, he also ordered ultrasounds, all normal. At least the feeling of a railroad spike going through the sacro iliac went away, so it's something. The last thing we tried was a decompression machine, maybe would have worked if I had the money for another 15 or 20 treatments, but I simply don't. Was trying to decompress it myself, seated in a chair, and kind of doing dips, I may have made things worse, I thought I should ask here before doing any more, so that's the first question. Some of the excercises and stretches I did may have made it worse too, but I just didn't know what would or would not work, or what I was dealing with.

I stumbled across PNE/PN as a pathology, through a prostatitis site, almost accidentally, I found a site describing it, and it sounded like my symptoms. Poked around a bit more, and found this site, after reading through the info here, I am 99% positive this is what' s ailing me (which was a rather crushing realization btw) at any rate, I'm treating it like it is, unless/until I find out otherwise. Next was to see if any docs in Phx treat it, fortunately, there is one, unfortunately, he's an OB-GYN, so what's a guy to do?

So close and yet so far, life is just so not fair sometimes. Of all the possibilities I've gone through in the last year though, trying to figure out what's wrong with me, this is the only thing that checks all the boxes, every single one, I could literally print out the "symptoms" page, and hand it to the doctor to descrbe my symptoms. I have, or have had, over the course of the last year, every one, barring the obvious exceptions, on the page. The anatomical diagrams, show exactly the area of pain, the area I have not quite been able to explain adequately to the doctors.

There is, of course, far more to the story, and if any of this is unclear, I apologize, the main thing I wanted to know was, am I doing more damage with seated dips, and how do you see a gynocologist if you're male? I see the doc here in Phx (Dr. Hibert I think?) is referenced on the site, but does he ever see men? Anyhow, thanks in advance for any info, and happy to answer any questions if anything's confusing, it' s probably not the most cohesive missive I've written, a little scattered at present. And thanks for the site, great info, if a little terrifying... :D
April
Posts: 671
Joined: Fri Jun 19, 2015 9:59 am

Re: New member questions

Post by April »

Hi Corwin,

So your seated dips involve bending over in a chair? Were you reaching toward your toes? In general, I would not do any stretching if you think you have pn, because if the nerve is compressed in a ligament, it could be stretched too far when you bend. More generally, I think you have to be careful with many kinds of activities since movement and stretching can irritate the nerve. But you can test things out and see how it goes. Dr. Conway treats men. He is in New Hampshire, but I think he will do phone consults. But, you could start by calling Dr. Hibner's office to see if they have a recommendations for physical therapists in Phoenix who treat male patients. His office may have local doctor recommendations too---not for a pn surgeon but for urologists or other doctors who are knowledgeable about pn.

April
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Violet M
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Re: New member questions

Post by Violet M »

Hi Corwin,

Sorry you are on this journey but I'm glad you were able to find our site and hope you find some valuable info here. I had the same reaction as you when I first read about PN/PNE because I matched the description so well also.

April has given you great advice. Hopefully you can find a good PT in the area who treats men. They might be able to point you to other resources in the area also.

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.
Corwin
Posts: 3
Joined: Sun Feb 03, 2019 6:34 am

Re: New member questions

Post by Corwin »

Hi April & Violet,

thanks for the replies, just so you know I haven't gone anywhere. :)

Not reaching for the dips, no, just in the seated position, lifting my body with my hands on the arms of the chair, I didn't know if the body being in that position was a problem. I was however, reaching for my toes when I stretched, I stopped doing both...

Saw a PT today, just brought him some info from here to start, and he thought I should see a neurologist first. Also managed to see my PCP to get a referral, showed him the info too, talked him into some Klonapin (he wouldn't prescribe it last time, the info from here helped, at least in part, convince him) get quite a bit of relief from it, with soma and gabapentin.

I got a MMJ card as well, been doing mostly vapes/concentrates, also the occasional borrowed oxycodone, but so occasional, I cut 10mg tabs in half to get two doses, a few hours relief, a few times a week is too precious to squander at this point, but with the current opioid hysteria, they're almost impossible to get these days. They're also unlikely to prescribe opiates if I have a UA test positive for cannabis (which begs the question, what are they gonna do when it' s legal, and everyone tests positive, just don't prescribe for anyone? But I digress...), cannabis vapes are pretty decent for the nerve pain though, because it's super strong, the downside is, you have to stay fairly baked, tolerance builds quickly, and it's still better as adjunct to, rather than replacement for, opiates, because they potentiate each other, so you don't need as much of either, it's also a little pricey. Oh well, all necessary evils at this point.

Meant to ask him if I could try lyrica instead of the Neurontin, but forgot all about it, being assertive with docs is kind of a new experience for me, interestingly, they seem to appreciate the input if it is presented rationally.

I will also present it to the neurologist, I don't know, it's only been eight months (ha, "only", feels like a lifetime) and maybe I'm being overly optimistic, but I have kind of babied it from the beginning, except for stuff I didn't know about; For example, a week or two ago, it started to feel quite a bit better, I'd been laying low for a while, and had major weeds out back, so I pulled them, squatting, big mistake, took me almost back to square one after a day or two, pain's been unbearable since. But catching it before too much time has elapsed, who knows, maybe I can recover...?

The girl I spoke with in Dr. Hibner's office was not too helpful, just said no he doesn't see men, and had no recommendations. To be fair, I probably could have been more concise, so I may try back depending on what the neuro says. I may also try Dr. Conway (though not sure how a phone consult works ) :)
I had the same reaction as you when I first read about PN/PNE because I matched the description so well also.
It was sort of disconcerting, I keep looking for something that points elsewhere, but literally everything points to this. Although, L3, L4 & L5 are already bulging in MRIs from years ago, and naturally they'll say it's coming from there, I'm pretty positive it's this, sometimes you can just look at a thing and "know", if you know what I mean.

I've also been paying closer attention to what's going on with me, balancing it against info here, and trying to match symptoms to the things pn/pne mimics, still everything points here. I really do hope I'm wrong, if I'm unable to work, life could get grim from here out, my life situation is at best, precarious at present. Hope springs eternal though...

One more question, since the start of this, there has been a cracking at the base of my spine, if I stand for a bit, then sit and lean forward a bit, it "cracks", but not like a vertebra cracking, it feels more like a ligament. Never happened before this started, that ring any bells? Just for curiosity's sake... ;)

Thanks again, Corwin
Corwin
Posts: 3
Joined: Sun Feb 03, 2019 6:34 am

Re: New member questions

Post by Corwin »

By the way, it's nice to see people still check in here from time to time, I really appreciate that, it's a rare condition, even more so in men, apparently, different equipment, same problem though, which is the only real skepticism I have left about what this is, just the sheer improbability of the thing. Anyhow, thanks for being here, it's nice to not be utterly alone on this one.... :|
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Violet M
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Re: New member questions

Post by Violet M »

Hi Corwin,

Not sure if it will be any comfort to you but I can pull weeds in my yard again. ;) There was a time I never would have thought that would be possible. So I think it's too soon to despair of doing some of the things you want to again.

I don't have cracking in my spine but I do get a loud cracking sound in the SI joints when I do certain exercises. I also have significant ligament problems. You may want to get an evaluation by a manual therapist or someone who specializes in the spine and pelvis to see if your SI joints and ligaments are an issue. If you have bad ligaments you can also have the pelvic instability and misalignment that goes along with it.

A neurologist may or may not be helpful -- depending on whether they have done any research or study into chronic pelvic pain and how to treat it. The neurologist I went to did not have a clue. If your problems are related to mechanical musculoskeletal problems a neurologist might not be much help. If your symptoms are caused by something like multiple sclerosis that is causing nerve degeneration, they might be able to help treat you with drugs. But that sounds unlikely in your case.

Good luck as you continue to search for answers. If you can get a diagnosis nailed down locally, then you can figure out treatments from there. It sounds like you will need to do a little more research and some more diagnostics to really get this figured out.

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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