Introduction, possible PNE

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Introduction, possible PNE

Postby c90danwaiel » Sat Sep 10, 2016 11:42 pm

Hello all,

Thought I'd post a brief introduction here and tell you my story. I haven't yet been diagnosed with PNE, although my physical therapist suspects a nerve entrapment might be the case, and so I'm hoping to educate myself and figure out what my options are.

I've had symptoms for about three months. It's primarily been an acute pain in my urethra along with burning pain in my penis (both in the urethra and on the outside; lately, there's been an odd cooling sensation instead. I've also had symptoms of frequent urination, and for a brief period, hesitation during urination. I was screened for every STD, ended up with a diagnosis of non-bacterial prostatitis, went on multiple rounds of antibiotics with no results. My urologist decided to refer me to physical therapy, which I've been going to for about a month. I've since quit seeing my urologist, who thinks this is purely a muscular-skeletal issue.

At my first appointment with the PT, she said my hips were twisted and gave me a corrective exercise to fix it. Within 48-hrs., my symptoms were 80% better and for the next two-weeks, I was almost symptom free with about 90% reduction in symptoms. It was wonderful! Then I went hiking and ended up locking up my quadratus lumborum muscle, which caused my hips to become misaligned again.

My PT massaged my QL muscle and unlocked it - and gave me stretches for my QL and piriformis muscles, and told me to resume my hip realigning exercises. However, after realigning my hips the second time, the pain remained. I've also noticed an area on my left butt cheek that when I apply pressure, causes replication of my pain symptoms in my penis. I've yet to see my PT, but through an email, she said it sounded like a peripheral nerve entrapment (she didn't specify which nerve, but based on my symptoms, the pudendal nerve makes the most sense). She said it might be necessary for me to see a sports medicine doctor who could perform hydrodissection to resolve it.

Some of the things I've read about PNE have me really scared. But, I have a theory of what might be going on - please feel free to weigh in here on how that sounds:


After realigning my hips the first time, I was symptom free. I wonder if my piriformis muscles at this point were relatively happy, since my the stress on them from my misaligned hip bones was now removed. However, after I went on the hiking trip and my hips went out of place again, I was given piriformis stretches to do, along with the exercises to release my back muscle and the hip realignment exercises. Maybe even though my hips become realigned (and the stress on my piriformis muscles was released), I could've kept the piriformis muscles tense by stretching them and irritating trigger points in them, causing them to stay tight even while I'm in alignment. I noticed my pain increased after doing the piriformis stretches, so maybe that's causing them to put pressure on the nerve?

One piece of evidence for this is that when I apply heat to my butt (particularly on the left side, where I can recreate my symptoms by applying pressure), right near my piriformis muscles, my pain goes away. Wonder if the muscle is relaxing when I do that, and the pressure on the pudendal nerve is easing up. Hard to say. I'm going to consult with my PT at our next appointment in a few days.

Where I got the idea for this scenario is from one of the main books on trigger points. They roughly outline this on their section on genital pain and trigger points: http://www.triggerpointbook.com/index.p ... Itemid=161, saying that tight piriformis muscles can entrap the pudendal nerve, which runs underneath it.

Prior to all this pain developing, I had taken up long-distance cycling and was regularly doing 30-50 mi. rides. Wonder if I developed tight and unhappy piriformis muscles from that.

I almost want to get a lacrosse ball and start trying to massage my piriformis, but I don't want to mess anything up more. Will be waiting to talk to my PT first. I'm a bit nervous it might come to hydrodissection. I've read a few things on here about that, and it seemed positive, but overall, I can't find much on the procedure. And the piriformis muscle is pretty deep as well.


Best,
Dan
Going on 10 months of being virtually free from pelvic pain after taking mind-body approach.
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Re: Introduction, possible PNE

Postby Andy_Pablo » Sun Sep 11, 2016 2:44 am

Long distance cycling was how mine started. I then aggravated things further with heavy lifting. I hope yours improves as I would not wish this affliction on my worst enemy. Good luck Dan.
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Re: Introduction, possible PNE

Postby Violet M » Sun Sep 11, 2016 5:51 am

c90danwaiel wrote: I noticed my pain increased after doing the piriformis stretches, so maybe that's causing them to put pressure on the nerve?


If you have a nerve entrapment, stretching can irritate the nerve. That's not to say you do have a nerve entrapment -- I don't know. Hopefully your PT can help you sort this 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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Re: Introduction, possible PNE

Postby c90danwaiel » Wed Oct 05, 2016 4:46 am

Hi all, I wanted to post a short update here.

I'm not so sure I'm having an issue with my pudendal nerve now. My physical therapist had me do some work with my piriformis, which I thought was putting pressure on my pudendal nerve, and it really had no effect. I've started seeing a chiropractor, and he pushed along the course of the pudendal nerve, and there was no change in my pain. He did find some significant tenderness along my psoas muscle where my genitofemoral nerve runs by my hips, and my physical therapist was thinking it might be something to do with iliolinguinal nerve.

I'm wondering if it's something higher up. Engaging my left hip flexors brings on the pain, while I can sit for hours with no change in pain. In fact, the other week, I had one of my best days, even though I had to sit down for about 14 hrs. for work and driving through traffic.

I've got an appointment with a sports medicine doctor in about a week, so hopefully, she can get to the root of exactly what's causing my pain. I'm staying hopeful. This was almost 90% better at one point, right after doing a hip alignment exercise. That exercise isn't resolving the pain now, but something shifted to where the pain nearly resolved. I'm hoping that can happen again.
Going on 10 months of being virtually free from pelvic pain after taking mind-body approach.
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Re: Introduction, possible PNE

Postby solarmom » Fri Oct 07, 2016 4:10 am

I hope you find a root cause and can eliminate your pain. Your mention of the piriformis is interesting. my pt also said my pelvis was twisted and gave me such exercises. but what has really helped me over the last two years is trying to strengthen the muscles in my left hip . i see a pelvic therapist but my best relief is when she first does external work to relax my hip flexors (with me on my stomach). i have a very tender spot in the piriformis which they told me to use a foam roller on. bad idea. i determined it is better to locate a tight spot on the outer part of my hip and just apply pressure to that point for a minute or so. i think maybe it is relieving the tightness at the insertion point on the femur.
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Re: Introduction, possible PNE

Postby c90danwaiel » Sun Oct 09, 2016 9:36 pm

Thanks solarmom! Great to hear what's worked for others and glad to hear you're able to get some relief through muscle strengthening.

I'm happy to report I've had some improvement recently. I have an appointment with a sports medicine doctor in a few days and was compiling together all my symptoms and what made things worse and better. Noticed everything was fairly inconsistent: some things made it better sometimes and then later made it worse. Always seemed to follow what I think it was. Antibiotics made it largely go away when my urologist thought it was prostatitis, but then it came back when I began thinking, after a new bout of pain, that the bacteria had become resistant. A hip alignment exercise made it almost 90% better when I thought that was the cause, but when my hips were misaligned and the pain stayed after I became realigned, the pain didn't go away.

I realized my latest theory for my pain - a pinched nerve in my hip flexors - really made no sense, as I'd had a few weeks of PT for a foot injury which involved intense leg work. Those exercises never made my pain symptoms worse, but really should have if it had anything to do with my hip or an entrapped nerve.

I came to the conclusion that in my case, it could largely psychosomatic. I have a history of OCD and other psychosomatic issues in the past, so it wouldn't be unprecedented. Saw a few people around here who'd had luck with mind-body solutions, and have been pursuing those, albeit with some skepticism. Still, I rode my bike 2.2 miles yesterday, and another 3.6 miles today with no increase in pain. The pain is lingering around, but at times, has nearly disappeared when I don't think about it. I'll be clearing up any possibilities with the sports medicine doctor, but think maybe I've got this figured out. Got my fingers crossed this could be it!
Going on 10 months of being virtually free from pelvic pain after taking mind-body approach.
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Re: Introduction, possible PNE

Postby Violet M » Sun Oct 09, 2016 10:43 pm

Good for you, Dan. Glad to hear something is finally working for you. ;)

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: Introduction, possible PNE

Postby flyer28 » Tue Oct 11, 2016 8:22 am

Difficult to say because there are many variables in play. The piriformis track might be the key, maybe you should try dry needling of piriformis, this muscle is relatively well aproachable...Piriformis /as well as obturator internus/ might interfere with pudendal nerve, I guess this scenario is much more probable than classic entrapment, if you had almost complete amelioratioon of symptoms. But> stay away from the bike, it might be really dangerous in cases like yours.
summer 2009 - episodic pain in genital area, mainly after sex, then also after any other physical labour
early 2010- major flare-up, lasting 3 months, later almost complete resulion of pain
late 2010 - chronification of pain
february 2011 - ESCW wave. major flare-up of debilitating pain, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypogastric plexus block
june 2012 - dorsal nerve block made by prof. Aszmann, no relief
november 2012 - worsening of pain
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Re: Introduction, possible PNE

Postby c90danwaiel » Wed Oct 12, 2016 4:51 am

flyer28 wrote:Difficult to say because there are many variables in play. The piriformis track might be the key, maybe you should try dry needling of piriformis, this muscle is relatively well aproachable...Piriformis /as well as obturator internus/ might interfere with pudendal nerve, I guess this scenario is much more probable than classic entrapment, if you had almost complete amelioratioon of symptoms. But> stay away from the bike, it might be really dangerous in cases like yours.


I did 8 miles of bike riding yesterday and my pain disappeared while riding. I felt great! Think I'm going to try stepping it up if the weather is nice next week and things look good from the sports medicine doctor appointment tomorrow. I've also entirely given up my seat cushion. Realized hard surfaces never used to make my pain worse until I was told to avoid it after my first diagnosis (prostatitis) before I was told it might be an entrapped nerve from my PT. I'm not noticing any real difference in my pain levels (actually, one hard chair seems to make it worse sometimes and another equally hard chair makes it much better - so I think this might be some sort of conditioned response).

I'm 99% convinced that in my particular case it's some sort of somatoform pain situation, but am checking in with a sports doctor tomorrow, just to double check. Whenever I'm not focused on my pain, it seems to fade. The pain can be intense at times and is very real. It's still definitely bothersome, and it's hard for me sometimes to believe it could be largely psychogenic. But my symptoms are so contradictory and nonsensical, that it seems the only explanation for me.

Realized I'd done some fairly extensive PT for an injured foot just about two months ago - back before I'd even heard of nerve entrapments - but well after I'd initially developed my pelvic pain. I was doing lunges, squats, and a range of intense leg and hipwork, with no change in pain. Then when I started physical therapy for my pelvic pain and began to hear of nerve entrapments, I began noticing simple leg movements seemed to bring on pain, but not all the time - just only when I was focusing on it and was actively looking for clues for things that brought on my pain, so I could determine what nerve was entrapped.

Now that I've started moving around like normal and exercising, I'm not noticing any increases in pain from any particular motions. I have a history of OCD and other somatic pain situations, so I'm surprised I didn't make the connection until now.
Last edited by c90danwaiel on Wed Oct 12, 2016 4:58 am, edited 2 times in total.
Going on 10 months of being virtually free from pelvic pain after taking mind-body approach.
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Joined: Thu Sep 08, 2016 5:49 am

Re: Introduction, possible PNE

Postby c90danwaiel » Wed Oct 12, 2016 4:56 am

Violet M wrote:Good for you, Dan. Glad to hear something is finally working for you. ;)

Violet


Thanks Violet! I'm feeling very grateful and (cautiously) optimistic right now. Haven't felt positive in so long, so this is a nice change :) Sports medicine doctor appointment is tomorrow, and am looking forward on getting her input.
Going on 10 months of being virtually free from pelvic pain after taking mind-body approach.
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Posts: 9
Joined: Thu Sep 08, 2016 5:49 am

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