New here - think I have PN ? Or is it a disc bulge?

[Violet M]

What kind of surgery did you have? What was causing your PNE (anatomywise)?

Pudendal nerve decompression surgery from Dr. Bautrant -- trans-ischiorectal fossa approach

Several causes anatomy wise.....chronically strained ligaments with pelvic misalignment and pelvic instability, ligaments were hardened and sclerosed according to Bautrant. PN was compressed between ST and SS ligaments and ST ligament at the falciform process was irritating the nerve and needed to be shaved off a bit. Can't remember what he found in the alcock's canal but I know he did some release there.

[Jason85]

So the neurosurgeon says the disc is not likely the culprit...he has no clue and doesn't pretend to...Better than the urologist saying I didn't use it enough and sent me on my way with Cialis. No suggestions...lol Canada is pretty bad for PNE but I think Nelly will probably be the most helpful. I don't want to start cutting yet. I'll try natural means first.

[helenlegs 11]

I'm really glad that the neuro guy had enough about him to admit he didn't know. The real problems come from when they try and claim you!! PHEW!
I mean always keep in mind that any back pain could cause you to 'hold' yourself differently maybe causing undue strain on pelvic floor muscles (or piriformis sometimes) which could create a PN situation but it would be a good pelvic physiotherapist who would be able to asses this and hopefully sort it out.
Let us know how you get on Jason, definitely the right way to go . . . . surgery should always be last on your list.
Take care
Helen

[Violet M]

...Better than the urologist saying I didn't use it enough and sent me on my way with Cialis. .

Jason, unfortunately, most of us have been told something crazy by a physician. At least the neurosurgeon isn't trying to rush you into surgery so that's a good thing!

Violet

[RickPNissues]

Jason;

Read your posts on a PN internet search and had to join in as it looks like we are both suffering from the same exact issues and symptoms for the most part. Maybe my saga can help you as I am still dealing with mine but we are narrowing in.

My name is Rick, a dual Canada/US Citizen and have lived in Colorado for the past 18 years now. Turning 40 this year and am about 5' 8" and currently at 210 lbs so carrying some extra weight as well. In the past I use to lift a lot of weights, bodybuilding and played very competitive hockey on up to Midget 'AAA", etc., BMX Freestyle, Moto-cross, crazy snowmobiling, waterskiing, downhill, and all the other fun stuff I am probably paying the price for now. I am an electrical engineer and spend most of my day sitting at a desk now so I know exactly what you mean.

Anyway about a year ago to the day, I had this same PN, back, etc. issue hit me. Eight (8) days after a full physical where I was cleared and deemed "good-to-go" other than some high Cholesterol, low HDL, triglycerides, very low testosterone (another story), etc. (metabolic stuff) I ended up in the ER. Severe pelvic floor cramping. Throbbing pain in equipment in the front, complete pelvic spasm from equipment in the front under perineum (bike seat area) to back door and shooting pain up the back door. Also felt like a rope was between my legs in the left groin and someone was trying to lift me up by that rope. Extreme pain and scary! It had actually started that Friday as I was walking back from a meeting and by that night I was really hurting. By morning I was in the ER.

Since I had the dribbling (weak prostate, etc.), they diagnosed me with a severe prostate infection and there started my 2 months on Cipro. Was on Vicodin most of that period as well. I lost 31 lbs (down to 179 at that point) in 7 weeks. Could not eat, drink, sleep, etc. It was painful. My company has been great as they let me work from home in the laying position from bed as that was the only position I could be in where it did not lock up and spasm. Sitting would spasm in 30 seconds and sitting leaning forward would lock it up instantaneously. Wish I would have kept the weight off but I started to feel better and it slowly came back on. Anyway, we cleared up the prostate infection but I still had this rope feeling, so they sent me to a Pelvic Flooring (PF) Physical Therapist (PT). As you know both internal and external manipulation, twice a week. No dignity left at this point but you put up with it so it will go away. It helped with cramping but then I hit a plateau at about 7 months.

At this point I was referred to a Pelvic Surgeon/Doctor and went for an initial consult. She recommended a different PF PT but one that does "Dry Needling". That has helped a lot as I was in full spasm on the inside and didn't even know it. She had me in different positions that the other PF PT and well in some of those positions I would spasm. Hurt a lot but you grin bear it and tell yourself it will be better.

Jason, the same thing would be happening each time. Remove the spasm and put my pelvis back in place. It just keeps popping out and misaligning. Then it has predictable effects. If my Tailbone goes out (always to the left) then I get instantly constipated. If my Sacrum goes out (always tilted down and back on the right) then I have diarrhea (which comes out like an internal allergy (yellowish and even frothy sometimes)). If my Ilium goes out always dropped and tilted back on the right, then I get horrible throbbing pain in my equipment up front. The PF PT removes spasm and puts pelvis back in place and instantly my bowel moments are perfect and right shade of brown. ALL pain is gone and I walk out happy go lucky, until I have to sit at work and a few hours sometimes days later it will get out of whack again and pain and symptoms start. Only odd time is L4 or L5 out of alignment. PFPT says I have way too much play in my S1 joint. It is apparently very noticeable compared to others.

However after once a week therapy and 5 months, it is much better but we are not at the heart of the issue or smoking gun of the problem. I took it upon myself to track down a Neurosurgeon to see if my back was the issue. Genetics or not, my mom, grandmother and both sisters suffer from back pain and all four had L4/L5 fused; my sister in their mid-30s. They had some incontinence issues, etc. as well as chronic pain but their surgeries fixed all that. The men in my family, most all have L5/S1 issues and some have had back surgery to repair those issues. Also some like me have a long mid section, short legs and maybe that is creating issues too.
Anyway, this Neurosurgeon is the first to really want to help me and he spent the first 2 hours with me at initial consult. He did not think it was my back and since back, pelvis and hip are all different specialties, you can fall through the cracks in the grey area of this issue we have. We did three things:

1. MRI of Lumbar and Pelvis
2. EMG Test of Pudendal Nerve and Pelvic Floor Nerves
3. Open MRI of Lumbar and Pelvis with and without Contrast in sitting, sitting leaning forward (Flexion) and standing 45 deg angle (weighted position)

The first MRI (laying down tube) showed moderate Bulges L4/L5 and L5/S1 with moderate tears on the exterior of the disc. That was it!

The EMG Test (which I just had today 03/04/2013) showed all nerves were healthy and functioning, even if in hypersensitive and autonomous from being in spasm or tweaked for so long.

The Open MRI (had last week 02/27/2013) was the tell all thus far. It showed:
L4-5: Moderate disc desiccation is noted. There is a 4.2 mm circumferential disc bulge which mildly impresses on the thecal sac. The disc bulge measures 2.7 mm in flexion. No neural foraminal narrowing is visualized.
L5-S1: Mild disc desiccation is noted. There is a 3.6 mm central disc protrusion which encroaches on the transiting S1 nerve roots bilaterally. The protrusion measures 2.7 mm in flexion. No neural foraminal narrowing is visualized.
Impression: Circumferential disc bulge at L4-5 which mildly impresses on the thecal sac. The disc bulge appears to decrease during flexion. Central disc protrusion at L5-S1 which encroaches on the S1 nerve roots bilaterally. The protrusion appears to decrease during flexion.

However they are just re-looking into my hips as a few of the MRI slices seem to show Hip Labral tears. The left hip appears to be very bad and leaking fluid internally all over and the right hip is minor but there. Funny as I have trouble lifting my right leg to put socks on sometimes and that could be from the instability caused in my left hip. (left leg is easy to lift to put socks on with no issue. I have noticed a lot more crunching and popping sound in both my hips when I lay on my back and move my leg around in a full range of motion circular rotation both directions. Right was always that way but left is now that way and never was before. So we will see what comes from this.

As my wife and I are expecting our first little boy in two months, which was successful IUI the first time, I had to test for all STDs, etc. in the process as we did not know what to expect and don’t go on WebMD if you want to really scare yourself with the symptoms. Bloodworks does not show any issues beyond those I mentioned though I sweat more now and blood pressure seems elevated a bit where I never had an issue with it prior.

So I am no doctor nor did I sleep at a Holiday Inn Express last night but I have a theory after all this nonsense. (see Canada and US, I would say the entire world is struggling with this issue)I think it starts in the hip. Poor stability in the Hip causes the back to take on more burden, then causing the back to go into spasm, whether you realize it or not. This causes inflammation and pinching down on the Pudental Nerve, which then locks up the Pelvic Floor and Pudental Nerve areas. Once everything is in Spasm internally, then any slight movement twisting pulls the pelvis out of position and then more pain, incontinence, BM issues, etc. I can calm it down slightly by laying on my back at night with both legs up on a pillow and letting hips fall to the side. By morning it is feeling pretty good but that is short lived once I drive to work.

Jason, can I ask if you have more pain laying on one side in bed at night? Does it hurt or is more constricted twisting to one side more than the other if sitting and twisting? If so, you might want to look at your hips too.
I will try to be pushing for the following and in this order if I can. Logic dictates that if I feel like a million bucks with no issue after everything is out of spasm and in alignment post PF PT, then it is a structural issue plan and simple. I would like to see them rebuild my hips (similar to arthroscopic knee surgery as that is what they do). Then shoot some of those shots (can’t remember what they use) into my L4/L5 and L5/S1 discs to provide some additional stability and shock absorbers if you will. Then do the pudental nerve shots to calm it down. I believe they use something like Botox.

If I can solve the hip issue and put a little strength in the lower spine, get it out of spasm so it does not pull the pelvis out of alignment, then I can start working on lumbar and core muscles to over develop them so that they can overcompensate for the weak structure. Maybe just maybe I can live a normal life again.

It is almost like completely rebuilding everything in the core muscle and that has zero to do with ability to squat so much skate so fast or whatever. The core muscles are probably weak with the big muscles taking up all the heavy lifting.
Anyway, I rarely ever open up like this as some of this stuff is embarrassing. I too went a couple of years where all of a sudden I needed Viagra where I use to be able to cut diamonds when I was younger. It is embarrassing, I know. I just wanted you to know, you are not the only one going through this and your symptoms are very, very similar to others including myself. I hope to have this licked soon as I have to get my little boy up on skates and the slopes in a couple of years. I will be heart-broken if I can’t because of these issues. My wife has been a real helper through this all. I could not have made it this far without her support.

If I find out more on my situation, I will post it. So far this is the best I can provide you and hope it helps. If you need to chat with someone, will find a way to get you a number or home e-mail.

BTW, I noticed a huge improvement in a U-shaped cushion to sit on. It takes all the pain away from my pelvic floor and keeps it out of spasm, but then my lower back is extremely sore and in spasm. One or the other. Just like in bodybuilding, we have to almost train ourselves that pain does not exist. That is the only way I have made it thus far. In January the Pelvic Surgeon prescribed nerve blocks (Gabbapentin) and muscle relaxors (Flexeril). They fogged me out and I was having trouble searching for words, etc. I was dumbed down. I took myself off the medications and decided I would put up with the pain and get the heart of it and fix it there. I can get through the days okay but very high levels of discomfort. Can’t sit for period longer than 20 minutes at a time.

Please keep us in the loop too incase something you are doing that is working may help me too.

[RickPNissues]

Also, most of the Pudental Nerve information I have received that was good, came from the sports medicine side of Canada. The following article is from a Chronic Pelvic Pain Conference in 2003 in Alberta:

http://www.jmweissmd.com/pdf/JMW_Pudend ... S_2003.pdf

It talks a lot about the various nerve sets and what causes what. No definitive answers on anything but in my case at least some areas to make note of. I will point out Page 4 at the bottom and the tie to Flexion of the hip from exercises like squats, cycling (probably hockey too) etc. which in the early years of development can result in a pull on the Ischial spine by the hypertrophied pelvic floor muscles. This is what turned me on to look at the hips closer as when we saw the open MRI and tears in the hips, it triggered what I read here.

These issues we have do not happen overnight and I am sure if you look back like I have in time, you will see where certain eposides started to happen in the past. Could be losing feeling in the groin momentarily after a long drive in the car, thinking it was the under garments bunching up and cutting off circulation. Happened a couple of times a few years ago but did not think much of it. Thought the ED issues were just stress from my job. Probably not! Thankfully ED problems have all disappeared and I have that part of my life back. Still some dribbling, but much better than before.

It is funny as I would get pelvic floor spasms at odd times my whole life, from puberty on. Sometimes 2 in a week, then nothing for 5 years. Sneezing would lock it up at times, which always seems to happen near a urinal so it is embarrassing trying to take a leak when the pelvic floor is in spasm and you are trying to bounce up and down or alternate standing on either leg to get it out of spasm so you could start to go to the bathroom. Again embarrassing stuff.

My point in bringing this out is there is something happening to people that is common and why should we suffer like this. It is some common thing triggering these effects to start with. The only way it will be fixed is to talk about the good the bad and the ugly and try to find patterns. I could only get this far after my body obviously said, that was enough. Now I am searching like the rest of you. Hopefully we find it out soon. I hope it is my hip as that can be worked on relatively easy without major surgery. It also fits a profile when dissecting everything down to what is happening. Again we are all unique so this is just my situation.

[Jason85]

Thanks for the post. I think our cases are very similar. It's probably something bio-mechanical and spasm related. I didn't lose the ability to sit down until recently but I did have a pelvic pain episode before that sent me to the ER on two occasions. I know a bodybuilder that had debilitating sciatica (this is what my pelvic symptoms felt like at first), and he told me it was just core weakness causing muscular imbalances. I felt better over the course of a few weeks foam (rumble) rolling my piriformis, glutes, lower back (my friend didn't recommend this for some reason), and legs. I also use an acuball/tennisball underneath the spinal erectors which have a tendency to tense up and lock (it's interesting as I can feel a palpitation before the tenseness goes away). I also do a ton of stretching. My physio said its not so good to leave these chronic pain and chronic tension situations for too long or the muscle shortens or habituates, I guess stretching counters this. I think my goal now is to build core strength to get some balance back. Curiously, after I eliminated the muscle tenseness (permanent contractions over the past year, or greater than normal tone) my left hip now clicks at that ball area (where leg attaches to hip). I never had this before.

When lying down, I tend to lie down on my right side, but that's just preference and I have vertigo...I think I am able to lie on the left without more pain than on right but there's something going on with the left inner ear. Oh, after I started foam rolling, and stretching, I find I can lie down on my side and use a computer, before this I would get really bad sciatica...I think this is muscular but I don't know about the pudendal nerve...that's a toughie since it's so complicated (it twists and turns past many points in the pelvis).

Prior to the Dec 2011 hit, I never had ED problems. I even lost non-erectile length! It's interesting, I do oscillate between diarrhea and constipation...I had no idea that pelvic alignment can influence that so much. You seem to have more knowledge of this than I do! I guess in Canada, our health care system isn't exactly going to jump through hoops for you than a good ol' fashion privately insured US plan...Most doctors I met were either apathetic, or at loss of what to do...

[Jason85]

I totally know what you mean by the rope though. There's a big rope, and then there are little internal strings that get pulled. If those internal strings hurt then I will have urinary problems. Look up myofascial trigger points. I had left testicular pain (felt like I got kicked) - and I've had this minorly throughout life after i started lifting - and it went away when my physio jammed her elbow into my QL (quadratus laborum?). She felt a knot there. That's what I use a tennis ball to get rid of. Sometimes when I run the acuball through the psoas area, my butt would hurt. There are so many interconnected pain pathways down there. I never would have suspected a back muscle would be responsible for testicular pain. There's a map of these things in that Headache in the Pelvis book. Right now, my physiotherapist is going inside the rectum and basically breaking apart these trigger points internally, I do the foam rolling external work. People are able to sit again from what she and what the admin said...The pelvis seems way too complex to not have many medical practioners/specialities on it. It's sort of like the bastardchild area of medicine that slips through the cracks of the neurosurgeon's spine, and the urologists prostate/bladder/genitalia.

[helenlegs 11]

Hi rick,

Welcome to HOPE. Quite a few people are exploring the PN and labral hip tear connection on this site. There have been a few posts about exactly that and a few have had labral tear repair and have commented on their progress.
Glad you two have found a connection. It's great to be able to try and work things out with reference to others similar experience.
Have you tried a sacroiliac belt at all rick? you mentioned that you have too much play and movement in your joint. Are you at all hypermobile? Her Majesty often posts very knowledgeably about pelvic alignment and pelvic pain. Glad you have found someone who is able to fix this problem, if only temporarily, at least you know where to go for a 'fix' again.
Your point about the lack of medical specialists for all pelvic pain is so relevant Jason. My problem has always been that because I had a S1/L5 microdiscectomy in the past the spinal/neurosurgeons wanted to put my pelvic pain (which does include scaitica) down to a lumbar issue although no impingement could be seen on imaging there. I had hoped that they would be able to investigate further but no. . . that is where their own anatomical specialty stops, it's almost like the bit below isn't there or doesn't matter because there is no one to go to apart from the very few who have taken up the challenge.
would your 'rope'(s) be the nerve itself? I can identify the same 'rope' like tension. It is always there for my right sciatic nerve but often for the pundendal. I would have no problem letting anyone know exactly where these nerves are located.
It's fantastic that you have both found what sounds like a good PT regime Hope it all helps.
take care,
Helen

[RickPNissues]

Thankfully my situation has been getting a little better and better each week but still not 100% fixed by any means. They are still tracking down the hip issue and I meet with the doctor on April 8th for both the back discs review from the MRI and the hip tear possibility. All I can do is keep methodically analyzing the situation and try things that are going to make it better to determine a pattern. The longer I can keep it out of spasm or the quicker I can relieve the spasm (Pelvic Flooring PT (internal and external)) seems to make the world of difference.

Jason, the only other item that I forgot to mention is when I was 12, I had a hernia operation on the left lower abs area (4” long) and last year when this all hit, they did an ultrasound to make sure I did not have kidney stones or something) and a inguinal lateral tear was noticed on the lower right side. I had a hernia operation in April of last year on the lower right side of the abs to repair that. Was to be small incision, but when I woke, I had a 5” gash. Turns out there were also two additional hernia tears with the muscle fiber that did not show up in the ultrasound near the observed lateral one. The whole region was ready to blow out so he fixed those three hernias, and also had to scrape away a lot of scar tissue as he figured there were at least two others that tore at some point in the past and repaired themselves but not entirely correctly. There is now quite a bit of mesh inside me to help support all of that. Hence now I have a ton of core strength improvements to do to stabilize everything again.

The result of the hernias was my pelvis fell into a "normal feeling" right tilted down and twisted back position as the other sides and areas overcompensated. Re-teaching the muscles how to be in the right position has been hard because it so easily falls back to that position. The pelvis is way too mobile. I had to relearn how to even breathe as I had developed a shallow chest breathing routine that was like an in spasm all the time situation. Like you, my bowel movements can swing drastically as in:

• Tailbone swung to the left (causes constipation)
• Sacrum tilted to the right and twisted to the back (causes diarrhea)
• Ilium tilted to the right and twisted back (causes painful throbbing in my equipment in the front and testicles “float” in the sack not dropped and loosely hanging)

Crazy stuff, but will keep you informed as I am getting slowly better, without any drugs (other than Aleve and Advil) and what not. The last two items we are looking into are these:

• When everything is out of alignment, my stools end up a yellowish pale color like there is too much bile in them or something. Seems to happen after I eat certain things like onions, dairy or chocolate so far as I can tell. I am going to see an allergist to see if I have some kind of allergy. An allergy, if bad enough can cause chronic inflammation down there and that can be a major contributing factor to the prudential nerve situation, which could not be helping the situation either. The link I passed over in the report in Calgary also mentioned inflammation as a major contributor.
• Lastly in the standing MRI, they found out my bladder has some distention to it. I am not sure what that means in the long run or to the extent (I meet with the doctors that week of April 8th so I will know more the), but it could be causing all the nerves down there to be in an autonomous state (always in alert) and also not contributing to the situation but exacerbating it.

The last thing I can provide you is just what I have observed in myself as well. Depending on the situation of having everything in the right position with pelvis and back in alignment, it has a major effect on ED, penal length, size, etc. As I mentioned I had a bout of ED for a few years prior to this all hitting me last year and saw it affect me. We have corrected the ED issue or it corrected itself somehow but I still notice:

• When back was in place and pelvic perfectly aligned, length and girth was up about 1.25” and 75% fuller in a relaxed state compared to out of alignment.
• When out of alignment, it was noticeable smaller, like coming out of a cold pool or when you are scared or in a panic situation. Similar to when the body is in a state of alert or spasm.
• Erected state was no difference in size but after the magic moment, when out of alignment, it stayed in the larger state but still relaxed for much, much longer.
• After ejaculation, I did notice it being sore on the left size behind the scrotum. This is hours and days afterwards. No pain during or up to the point.

The only thing I can know for sure is to eliminate any sitting type of position for sex or masturbation. Seems to really flare up the situation a lot compared to a lying or missionary position. That I can say for a fact, at least in my case. No pain if ejaculation in a non-siting position.

Lastly, I bought an inversion table (a good one) and that has helped a lot. Started with only being able to hang for 45 seconds and now I can do 5 minutes at a time, twice a day. It has helped tremendously and puts things back into alignment naturally by hanging.

Hope it helps in some way. Still working on it, but methodically. At least I can live with the pain (it is very uncomfortable and a little tasking) but not being on any drugs or any kind seems to be a very good position compared to the unfortunate situations I have read on the website. I do feel bad for all of us in this situation.