Health Organization for Pudendal Education

Hello I’m new to this site. My name is Jason. I haven’t been officially diagnosed yet, but I think I might have PN. I could write a 500 page book on my experiences with the “issue” over the last 3 years but I will try to keep my post short. I’m a 32 year old military soldier who suffered 2 herniated discs in my lower back while doing push-ups in 2011. Prior to 2011 I was an amateur bodybuilder and power lifter. Now I have the body of a swimmer. I use to keep my ABS in a tightened state all day from 2007 to 2011, which definitely had an impact on my pelvic floor.

3 days after I hurt my back I started to experience the following; tingling, itching, burning, excessive sweating, stabbing, and/or shooting pain throughout my penial area and anus. I also experience excruciating pain during bowel movements, urination, and orgasm. My semen is also pasty and come out like corn syrup. My bladder never empties fully. I have virtually no blood flow to these areas, rarely have an erection, and have little control of my bladder, thus causing leaking of urine throughout the day. It is as if my lower body doesn’t exist. Luckily I can still run but I’m soaked by the time I’m done. I can also sit for 30-45 minutes before the “tingling” game begins. I recently discovered that I should go for a walk at 30 minute intervals and purchase a special seat cushion.

I’ve consulted with 20+ "experts" throughout the U.S, and they have provided me with no answers. I’ve been used as a human Guiney pig. They started me off with Motrin, then onto Viagra, which made me go blind for 2 days, then alpha beta blockers that actually shut down my respiratory system. Thank God that the ER was within 10 minutes of my house. They also had me comited to the crazy house 3 times. I’m also thankful that the military paid for the $400K in medical expenses thus far. The closest form of relief was from a pelvic floor physical therapist in Arizona who performed manual pelvic floor stimulation on me through the anus. This treatment was able to slightly relax my nerves for 5 days max, but I had to endure weekly uncomfortable sessions. All in all, I don’t have any friends in the local area and only leave the house for work and groceries. I would give me right hand to get rid of 50% of these symptoms.

After reading these blogs I’m relieved that I’m not alone or crazy. I’m not an alien like the experts suggest. It’s a shame that the internet has more answers than the doctors provide. Could you please help me with the following?

Do you all think I may have PN or PNE? Every bit of research points to the pudendal area in my buttocks where I felt that first “hot pocker” that made me scream to high heaven. Now I’m use to it and it’s like sticking a fork in an electrical socket. People ask me at work how I’m doing and I say “fantastic”, but I want to tell that that I’ve only been shocked 10 times since I work up this morning.

I would like also like to get an MRI done that specializes in these areas. I hear that the neurography test is pretty good, as well as the 3-Telsa MRI, CT pictures of the urinary tract or an EEG/EMG. Instead of lifetime pelvic floor therapy sessions, I would like to get a set of BOTOX, nerve block treatments, or steroid injections before I consider surgery.

Thanks in advance for your time and consideration. I look forward to receiving your response. NEVER GIVE UP...

Jason,

Welcome to the forum. I am sorry to read all that you have been through. I would consider discontinuing running and heavy exercise of any kind until you get more clarification on what may be causing your symptoms. What types of doctors have you seen? A urologist? One suggestion, if rectal PT gives you some relief, a valium/baclofen suppository that can help relax the nearby muscles might help too. Used twice a day maybe this can provide longer term relaxation of the muscles and relief. Imaging is useful in eliminating other, more obvious, causes of pelvic symptoms, but imaging to diagnose pudendal nerve entrapment is controversial. Some doctors will say they can see the nerve and use the images to make a diagnosis and others will say they cannot. It is a grey area at best. Have you seen any doctors that were able to account for your symptoms in any other way? Have you seen a doctor with knowledge of pain in the distribution of the PN? Botox helps some people and can take a couple weeks to begin to work and then wear off in 10-12 weeks or even sooner. There can be side effects to this that you can check out on the Botox section of the forum. Nerve blocks can be a good diagnostic tool if you see a doctor with experience in administering them. You can read the nerve blocks section of this forum and see how others have responded to the blocks. Is your pain worse with sitting? Can you avoid sitting for a while and see how you feel? This nerve can take a long time to heal and self-care -- avoiding the things that trigger or worsen pain -- MAY help with pain or other symptoms long term. Do you have any times when you have little to no symptoms?

My best to you,
Stephanies

Welcome Jason,
So sorry to hear what you have been through. Glad you found us and realize you are by no means crazy, just suffering similar to thase of us on here. There are definitely signs (electric shock feeling) of nerve issues. Bladder problems are a symptom of PN/PNE but symptoms overlap with other conditions. There is a symptom liat off the home page along with the FAQs that cover what to do, stop doing, conditions to rule out and treatments and diagnostics (some you listed). PN-aware PTs are off the homepage which you may have had since they did pelvic floor treatment (I had the same and although tough has been very helpful post surgery). Surgery is not to be taken lightly we suggest reading the forum and trying non-invasive treatments first. Hang in there and I hope you get some relief soon.
Janet

Hello Stephanie. Thanks for your reply. I’ve seen several neurologist, urologist, orthopedic technicians, and pelvic floor physical therapist. Thanks for the recommendations that you provided. I wasn’t able to see and doctors that were able to account for my symptoms. Next year I’m going to see another neurologist. My pain is worse when sitting, however it only acts up after 45 minutes or so. I work at a desk all day and I can feel the urine leakage/electrical shocks while sitting. My pain is worst in the evenings and settles down around bedtime. It feels better when I lay down. I’m excited about next year now that I’ve narrowed down the source of my pain. Thanks again.

Hello Janet. Thanks for the reply. I will read the FAQ section for more info. I will also need to locate a good physical therapist who specializes in PN therapy. I hope your conditions improve also.

Jason,

You are definitely not alone or crazy.

If you want to get an MRN, here is a list of locations. http://www.neurography.com/locations I can't say for sure if the 3T MRI or the MRN is better but neither is 100% accurate in determining pudendal nerve entrapment. Have your doctors determined the herniated discs are not the problem?

When you had pelvic floor PT did the PT press along the course of the pudendal nerve via the rectum? For me, pain along the course of the nerve when pressed, was one of the determining factors. I had a very abnormal EMG. While EMG may provide some clues, it is not definitive in the diagnosis of PNE. http://www.ncbi.nlm.nih.gov/pubmed/17996810
I also had shooting jolts and urinary problems.

Some people get better by changing their lifestyle. That's definitely something to consider if you haven't already.

Best,

Violet

Violet,

What is considered a very abnormal emg? The range of numbers, like over 2, like that. Where did yours fall?

I was told mine was just abnormal and there was no way to tell if it was mild, moderate or severe.

That would be helpful informational you said it provides some clues.

Thank you -DakotaGirl.

Hello Violet. Thanks for the response. I will look up the neurography locations in my area. The doctors have recently told me that my herniated discs were not the cause of the problem. And they also said that the discs could have been injured way before I did the damage to my Pudendal nerve. I’ve changed my lifestyle drastically, but I will have to do it again now that I know what the problem is. It feels great to narrow down the source of the problem. I’m not “better” yet but it feels awesome to know that next year will be full of appointments that will help provide the right medications and some closure. I also thought that I had the worst case of this issue, which is clearly not true. At least I can fly on planes and take road trips. I feel extremely bad for those who cannot drive to the grocery store.

DakotaGirl wrote:Violet,

What is considered a very abnormal emg? The range of numbers, like over 2, like that.

DG, it's been over 10 years ago and I don't remember what the scores were other than to say that for the EMG it was very high on the side of my worst pain. There are different "normal" numbers for different electrophysiological tests so it probably wouldn't help that much to post the results of my EMG even if I could remember what it was though. My PNMLT scores were pretty close to normal prior to surgery but I don't put much stock in PNMLT. Some of the docs, like Hibner, don't even use it.

Jason, if you can get your pain levels down just with lifestyle changes that would be great. The fact that you got some relief from PT is a good sign so hopefully with time and being careful you will be able to get back into life. You may need to continue being careful even after the pain calms down.

Violet

If you have not had one, I would suggest electroconductive studies of the lower extremities: these are much easier to access than pudendal diagnostics. You might have asymptomatic issues with the lower extremities such as reduced sensation, reduced reflexes, reduced motor nerve activity. These things are easy to overlook in the absence of lower extremity pain...But if you have these issues as well as pelvic symptoms, the cause is most likely to be your back whether your doctor thinks so or not. Two ways the problem could be arising from your back without being obvious to your doctor:
1. if there is any annular tear and leakage from the herniated discs, it will cause a chemical radiculopathy around your spinal nerve roots. If your lower extremities test abnormal, annualar tear / leakage can be ruled in or out with a discogram.
2. I had tarlov cysts (aka meningeal cysts or perineural cysts), which are herniations of the nerve roots filled with cerebrospinal fluid. They become symptomatic when they begin to crowd out and compress the nerve roots. Unfortunately, many radiologists are taught that these are ALWAYS an asymptomatic phenomenon and will not report them; or if they are on the report many doctors will assume they are asymptomatic and ignore them.
I bring up these possibilities because it seems odd to me that you injured your lower back and yet this supposedly has NOTHING to do with your symptoms. That is possible but, it seems to me, unlikely. If you discover lower extremity abnormalities too, IMO the chances are practically nil that this has nothing to do with your back injury.