New & need help!

[gwynnsh]

Hello,

I'm a 40 year old male that had surgery back in March (Bladder Neck Incision) due to scar tissue that formed after I had my prostate removed in July of last year. Ever since the bladder neck incision, I've had really bad urgency, frequency, mild incontinence and a strange pain/constant throbbing in my rectum. Any time I drink something it just goes right through me within an 30 minutes or so. Whenever I try to do a Kegel exercise now it actually hurts instead of giving me relief. Something happened during the bladder neck incision but I'm not exactly sure what.

After doing some research, I believe that I have myofascial pain syndrome or nerve damage due to the surgery. I just have this strange pain in my perineum/rectum that won't go away since the bladder neck incision. Let me also add that I've had chronic testicular pain & abdominal pain (directly behind my navel) for 1/2 my life but that's another story. I thought if I waited it out 6 months for everything to heal that maybe it would get better but unfortunatley it never did. The pain/sensation is always there & it's not made worse by sitting down or standing. I've already had 2 cystoscopies that were normal & a normal test for urodynamics back in July. This leads me to believe that I have some form of nerve entrapment because I've never had urgency/frequency/incontinence (only during the healing phase of LRP but that's normal)

I've actually had a couple of sessions from a pelvic floor PT during the past 2 weeks but it didn't really seem to help. I decided to see another PT that specializes in pelvic floor problems last Friday & things seem to be slightly better so I plan on having several more sessions. Apparently I have pudendal nerve neuralgia (left side) & muscle tightness throuhgout the pelvic floor. My left cheek was apparently flatter than the other side due to nerve damage & the obturator muscle was also mentioned. This is literally driving me insane & I really need some relief. The anxiety that goes along with it is absolutely horrible. Has anyone had an experience like mine or anything similar?

[janetm2]

Welcome,
You are having some common issues and are sadly not alone in this and the anxiety. My similarity is pelvic floor muscle spasms that were rectal off and on with different treatments and PT. Glad you found a better PT and for PN & PNE kegels should be avoided. You may want to try some medication for pain anxiety etc as stresscan certainly make it all worse. There is info in the FAQs off the homepage on this and many other things. Sorry you are on this journey but we have some great advisors here that can guide you in trying to find out the actual cause which can be other than PN or PNE. There is also a symptom list so you can see how many you have again see homepage. Good luck.
Janet

[gwynnsh]

Thanks Janet,

I've been on Ultram for several years but I hate taking medication, although I do take it on occasion. I also have Xannax but I don't take it very often. I'm determined to get better from this misery one way or another. The PT listed these problems: (1) Sacral Torsion (2) + Pudendal Nerve Left Side (3) Obturator Internus & Coccygeus Spasm (4) Left Glut Muscle Slightly Smaller. My symptoms aren't really off & on but rather all the time, no matter what I do. Did you have any of these abnormalities & if so, did PT help?

[janetm2]

Sorry your specifics did not match mine. My pelvic floor levitor ani muscle spasms post PNE surgery were helped by PT. PT before sugery did not help me because my Pudendal nerve was entrapped between the two main ligaments. Do not despair your issues may be helped or solved by PT and I am hoping someone else will answer your post with advice and guidance. I know some people have been helped by PT but I am not clear what matches up. As for the medicines some guidaance is to take something to keep from a chronic constant pain cycle by even those who did not want to take meds. Certainly all things are up to you and we just try to pass along what we can. Hang in there I know help is on the way from tjose with more knowledge or similar issues.
Janet

[Violet M]

G, I've never known 2 people with exactly the same symptoms and experience when it comes to pelvic pain so it really boils down to finding a practitioner who can put all of the pieces together for you into an explanation that makes sense. It sounds like your PT has given you a good synopsis of some of the musculoskeletal abnormalities they are finding. Did they press along the course of the nerve and elicit tenderness there? Is that why they are saying PN involvement? That's how I was diagnosed with PN.

I also had obturator internus and coccygeus spasm that was caused by the PN being entrapped and irritated. SI joint dysfunction and pelvic misalignment led to PN pain primarily on one side. Pain was constant but also made worse with sitting.

If PT isn't making you worse it might be worth staying with it for a bit to see if there will be improvement over time. In the meantime, you may want to have more diagnostic tests to try to narrow down a more certain diagnosis.

Violet

[gwynnsh]

Hey Violet,

Thanks for your response. I'm sure no 2 people are exactly alike but I'd really like to find someone that has similar symptoms. Personally, I know that the BNI is what caused the awful urgency/frequency/incontinence & increased pain but I'm just not sure why. If anything, I'd think the radical prostatectomy would have caused those symptoms since it was a much more involved procedure. I did have incontinence/urgency/frequency & pain after LRP but those symptoms resolved after several months.

It's definitely tender at certain points within the rectum but it's really hard to pinpoint the exact areas that refer pain while my PT is doing therapy. She mentioned + pudendal nerve neuralgia on the left side, sacral torsion, obturator internus/coccygeus spasm along with left glut smaller than right side. She also said that I had nerve damage but from what I've read that's very unlikely & it's almost impossible to tell on a physical exam, so I don't know what to believe. I have a really strange feeling inside my rectum that's also painful but it's really hard to describe it, almost like a hollow/weak feeling. The urgency/frequency is the worst though. I've had a few PT treatments & they usually seem to make things a little worse but then it calms down a few days later. Seems to help slightly but I'm not just not sure (could be in my head?) Anyway, I plan on having a few more PT sessions just to make sure.

There is a new MRN imager a few hours away at UAB & I'm looking into getting that done soon but even if they diagnose it there's only so much I can do, right? It would still be nice to verify it though. I only hope I can make it through it without having a horrible panic attack. have you gotten an accurate diagnosis & I so, did anything help you? Also, do you know what caused your symptoms?

Hunter

[Violet M]

Hi Hunter,

The pudendal nerve innervates the bladder sphincter. If you take a look at these images, the bladder sphincter is near the bladder neck so it seems reasonable to conclude that surgery in that area could cause a problem to the pudendal nerve.

http://en.wikipedia.org/wiki/File:Gray1156.png
http://www.yalemedicalgroup.org/stw/Pag ... =STW047997

But to say for sure whether it's small fiber neuropathy in the area of the surgery or somewhere else along the pudendal nerve trunk (or some other nerve) can be difficult to determine.

There is a new MRN imager a few hours away at UAB & I'm looking into getting that done soon but even if they diagnose it there's only so much I can do, right? It would still be nice to verify it though. I only hope I can make it through it without having a horrible panic attack. have you gotten an accurate diagnosis & I so, did anything help you? Also, do you know what caused your symptoms?

Definitely the more things you can do to narrow down a diagnosis the better. Yes, I did get an accurate diagnosis of PNE 9 years ago. My symptoms were brought on by weightlifting which caused chronic ligament strain, pelvic misalignment, and pressure on the pudendal nerve. I believe I had a genetic presdisposition also since some of my ancestors seem to have had PNE-type symptoms. I had some of the same symptoms as you, including urinary urgency and frequency plus a lot of pain. An antidepressant medication helped dampen some of the urinary symptoms temporarily but ultimately what brought me back into the land of the living was PNE release surgery. I tried PT for awhile but internal PT flared up the symptoms and PT to fix the pelvic dysfunction just wasn't helping much.

I understand your concern about a panic attack during the MRN. My first one was a little scary but I've had several since and now they are a piece of cake. You will get through it.

Take care,

Violet

[gwynnsh]

Hey Violet,

Thanks for your reply. I definitely believe it's pudendal neuralgia, which is irritation but I'm not sure about any actual damage to the nerve (neuropathy) The internal PT also flares up my symptoms but it ends up calming down after a couple of days. I've had a few PTs tell me that sometimes it can get a little worse before it gets better & that I should get at least 7 or 8 treatments before I give up on manual therapy. The urgency is the worst as I go 10-12 times per day & I'm scared to drink more than 30 ounces a day so I'm not constantly in the bathroom.

I have a few questions if you don't mind me asking:
How exactly did you get an accurate diagnosis?
Was it a combination of nerve blocks, PT & MRN? Did they only have to scan your mid-section & not your entire body?
Did you have incontinence as a symptom and a strange feeling/pain in the rectum? Also, did your develop really bad anxiety as a result?
Where did you get PNE release surgery performed & by whom?

Thank you for listening!

[Violet M]

Hunter,

Initially I was diagnosed by a pelvic floor physical therapist. Every physician from then on out confirmed the diagnosis -- usually by physicial exam. I also had nerve blocks and EMG testing that helped confirm the diagnosis. I did not have an MRN. I had an MRI of the lumbar and lumbosacral plexus areas to rule out other problems but it wasn't a 3T MRI. The MRI was not full body.

I didn't have much incontinence -- just a feeling of needing to go a lot. Pudendal neuropathy can cause incontinence though. Yes, I had some rectal discomfort that I think was due to pelvic floor muscles being tense. And yes, I had severe anxiety -- used to cry frequently and I wasn't very functional before surgery. I had PNE release surgery from Dr. Bautrant in France but if I was male I'm not sure I would go that route.

Violet

[gwynnsh]

I'm planning on going the nerve block route & perhaps PRF ablation if the block actually works. I just can't decide on where to go or exactly who to see. It seems the more research I do, the more confused I get. I do have a couple of options though. Did you ever have PTNS for bladder symptoms & if so, did it help? Did the MRI not show any abnormalities & have you heard anything negative about the MRN? Thanks again!