Health Organization for Pudendal Education

Greetings to all,

Let me begin by stating, I have no clue if I should be on this forum, but my symptoms coincide with the majority mentioned here! I am thankful to have found this place and am excited to comb through the posts to feed my need for hope.

I assume this is where I start with " it all began..." So that will I do. It all began in August of 2014 when I peed the bed for the first time in a long time! My wife suggested that I go to the doctor. I of course attributed it to drinking water too late before bed, but the problem persisted. I also noticed that I had to pee every 15 to 20 mins. I actually started timing the span between urges. I finally did get into see my primary care physician (pcp) and he found that my bladder was not emptying. On to the urologist, where they performed a cystoscopy and found nothing wrong other than I had 900CC in my bladder! At that point they handed me my first box of intermittent catheters. Yeah!!! After the urodynamics testing they diagnosed me with Detrusor Sphincter Dyssyrgenia and then referred me to a Pelvic Floor Therapist. They did show that I did NOT have a neurogenic bladder. At this point I should inform the reader that I had started my second round of p90X3 in August and was "what I thought" in the best shape of my life! (I can remember during one of the sideways lunge exercises I felt a pop and a pain in my rear end).

I was given prescriptions for Valium and Rapaflo. During this whole time I was intermittent cathing myself up to 6 times a day. The struggle I was having was sometimes I would have the urge to pee and sometimes not. In all times I was averaging 38% output on my own urinating, the rest I released with the catheter. Even at the height of the PT I got as high as 50% (taking 1/2 hour hot baths as well) but I tried explaining that I wasn't feeling the "urge". By the time I feel the "urge" to pee, I have around 750CC in my bladder. So onward and forward I went trusting what urologist and pt was saying and I began to notice that bowel movements were becoming a struggle as well. I had to seriously push to have a BM. My PT called it "pencil poop". So I began taking Mira- Lax twice a day to have a bowel movement. My doubts and worries began about here. How could a very healthy guy @ age 35 go from having no problem urinating and defecating to needing catheters and mira-lax. I really began asking hard questions of all doctors and therapists why I wasn't feeling the urges until it was too late. I pretty much became a machine knowing that I better cath every 3-4hours. My last session of PT they did a Uro-Flow test and found that my pelvic floor and abs did not contract when I urinated, but my bladder activity was very minimal (I believe due to the rapaflo), so they sent me back to Urologist. He told me he didn't have a clue and couldn't help me. That was a new experience for me. I felt pretty low at that time.

I did however keep very detailed records of all the things I was doing on an excel spreadsheet. I tracked my daily bathroom habits, activities that improved urine output and what effects rapaflo and valium had on my urination. Over the course of this time I am still averaging 38% output, my best results were during PT with highs in the upper 40% with no rapaflo. Around Jan 5th I noticed that a tingling sensation right above my tailbone had never gone away even with PT. I practically had to beg my PCP to refer me to a nuerologist, he kept stating we had no diagnosis, yet he wasn't really trying to find one. Finally I got into a neurologist and he at least scheduled me for MRI's. I had MRI's done starting with the Lumbar up with and without contrast. Guess what, nothing shows up. That was a bittersweet moment. They have ruled out MS, Tumors, Prostate cancer, Bladder Cancer, etc. My urine testing and blood work all comes back normal and fine. He never did an MRI on my pelvic and sacrum areas.

The Neurologist said the he doesn't know and wants to refer me to the Mayo-Clinic (at least he is pro-active and trying, I really appreciate him). I began doing my own in-depth research(google!) and I typed in hypertonic pelvic floor, urine retention, bowel incontinence and I found this place. I researched Pudendal nerve and I truly believe that it lines up with what I am struggling with. I relayed the PNE diagnosis over to my neurologist and he said he never heard of it!!!! However, he did schedule a EMG test for the pudendal nerve, but that's not till 3 months away!!

The only thing I don't have that I read of a lot here is the intense pain. Other than the tingling above my tailbone, I feel pretty good. There struggle to pee and poop are my main issues. Sexual function is still there as well. This has now been going on 7 months, I have seen 9 doctors, and no one can give me a clear diagnosis. The pudendal nerve is the closest thing I have found. I am going to try a holistic doc next while I wait for my EMG and the referral into MAYO. I am concerned and don't have a clue if I should try stretching, walking, running or what.

Im an open book and I look forward to sharing with others on this forum. If I can help anyone else with this issue, let me know. Thanks for letting me vent....

Casey

Hi Casey,

Sorry you are going through this.

Well, there have been pudendal neuropathy patients who have posted that they had to self-cath and I currently know a guy who doesn't come on the forum who has been diagnosed with pudendal neuralgia and he has to self-cath. The pudendal nerve innervates the bladder sphincter and the anal sphincter so pudendal neuropathy seems like a plausible explanation but it's hard to say for sure if that's what is going on with you. The term pudendal neuralgia is typically associated with pain but pudendal neuropathy is a more general term that suggests nerve damage. Pudendal nerve damage can result in incontinence but you probably already know that from googling. The pudendal nerve also innervates the dorsal penile nerve so if it was the main trunk of the pudendal nerve that was affected it seems like you would be having symptoms there also, although I had one doc explain to me once that your symptoms will depend on which nerve fibers in the nerve are affected. As you can see, it's not an exact science.

The trick when you have symptoms suggestive of pudendal nerve damage is to determine whether there is a peripheral nerve problem or if there is something going on in the spinal area or sacral nerve roots so you really want to have a good MRI (preferrably 3T) that checks for nerve root impingements including tarlov cysts. Some PN docs like you to have a pelvic MRI and lumbosacral plexus MRI. You might want to check out the posts on Dr. Hollis Potter's protocol in the MRI/MRN section of the forum.

So, what all did your PT check for? Sounds like you have a history of weightlifting with a lunging weightlifting injury. Weightlifting is what got me into trouble. Did your PT check your SI joint for sacroiliac joint dysfunction? What about pelvic alignment and pelvic ligament stability? If not, you might want to see a manual therapist to have all of that checked.

Last I heard, Mayo clinic treats pudendal neuralgia primarily with physical therapy treatments but if you are lucky, maybe they have come up with some new things. It's not considered the top center for treatment of pudendal neuralgia but maybe they will at least be able to come up with a proper diagnosis for you. Definitely worth a try if you live near there. If not, you might want to do a little more research on who the specialists are.

If you have a hypertonic pelvic floor you may hear all kinds of opinions here as to whether it could be related to stress/anxiety or nerve damage. Anyway, hope you find some helpful information browsing the forum.

Best,

Violet

Violet,

Thanks for the info. My ins wont sign off on Mayo anyway. I did talk to a urologist that had some experience with pudendal nerve issues. She put me on some anti-inflammatories and steriods, plus back to PT.

The PT has been my only highlight. The therapist said that my hips were rotated pretty bad and there was alot of "stretching" that needed to happen. I am going back to that starting tomorrow. I would like to find a place to have the EMG test for the pudendal nerve. The neurologist said that they are looking for me. Where are the best places to go for that test?

Thanks

Casey

There are not a lot of doctor offices that do pudendal nerve conduction studies. Below is a link to the main page of Pudendal Hope. Look at #14 and #15. It discusses the different types of nerve conduction studies. Just a word of warning, there are controversies around the accuracy of PNMLT as the individual conducting the test can alter the result. I had mine done by Dr. Conway and his office has a lot of experience with them. However, I do not think he treats men. Dr. Dellon does the sensory testing only. Last I knew, and this was a couple of years ago, he had normal values for men for dorsal branch of the pudendal nerve but not for women.

http://www.pudendalhope.info/node/8#14

Ask your PT if they know any physicians in your area that does the PNMLT. Check out the International Pelvic Pain Society website. You can search for physicians by locality and they have an interest in pelvic pain. They may not all special in PN but it can at least give you some physician offices to call.

Some colorectal doctors or surgeons perform the PNMLT. You can call around or ask a PT or obgyn for names of doctors who can perform this test locally. I had it done locally and had the same results (normal) with the local doctor as I had with Dr. Bautrant.

When I spoke with Dr. Conway in September last year he said that he does treat men.

Casey, just be careful with the stretching because if the nerve is compressed between ligaments as mine was, certain stretches can cause an injury to the nerve. I was put on a program of stretching and it sent me into full-blown PN pain. So, make sure your PT understands pudendal neuralgia, pudendal nerve entrapment, and what stretches are safe to do that won't make you worse.

Violet