Health Organization for Pudendal Education

You're right, Drew, it's a lot to wade through. You can do a search on a particular doctor using the search bar up at the top right or if that brings up too many results you could go to the surgery section of the forum and look for topics on a particular doctor. For instance, there is a long thread on Dr. Dellon in the surgery section. If there is a specific doc you are considering we might be able to point you to a discussion on the doc or tell you which forum members to private message who have been to that doc.

But I agree with what Red said -- he pretty much gave you a quick overview of what to do first.

Violet

Just wanted to update where I'm at right now. The pain now seems to be gradually getting better but it's hard to tell because it's so slow. 2-3 days a week I'm pretty much pain free but when the school week begins, on mondays, it all starts again. I'm taking two classes and it's always fine for my first class but really bad for my second class. I have an anxiety disorder that acts up more during my second class so I'm starting to really feel that anxiety/nervousness aggravates the crap out of this.

Now that the pain has been slowly improving (I think), I've been noticing my other symptoms. The absence of a normal urge to urinate is so bad that in the mornings when my bladder is at its fullest I have absolutely zero urge to urinate. I even waited 3 hours after I woke up the other day, hoping an urge would develop but never did, before I finally just went. It was a large volume too.

Another scary thing, as a man, is how I don't get random erections anymore. I know I mentioned this in my first post but it's becoming more apparent and more difficult to deal with now that pain symptoms aren't as prevalent. It's very hard to accept. I used to be able to think of the slightest sexually related thing, like something as innocent as kissing and I could become aroused and get an erection. They used to just come spontaneously. Now they never do, except in the morning sometimes, which is new because up until a month ago I would never get them in the morning ever since this all began. But even still I can't maintain them for the life of me. And I have to actually physically check with my hand every morning to see if I have one. This is a weird phenomenon. It's hard to tell if I have an erection now without checking with my hand to see which seems to me to be an indicator of nerve injury/damage.

On a brighter note I had an appointment with my uro yesterday and he's heard of this disorder and is aware that it gets very little attention in the medical community. He's fine with us taking this approach now and I'll be starting Cymbalta as soon as I see my Primary. He says that usually he uses pelvic floor therapy in the form of electrostimulation but that it only covers up symptoms. I asked him if the Cymbalta is not doing just the same and he said that the Cymbalta addresses the issue more because it causes neuromodulation or something. I hope the Cymbalta does more than cover up symptoms.

I'm glad the pain has been improving, but I have to admit it's very unsettling not getting erections anymore. It's really getting me down. I don't know if the normal urge to urinate will ever return either as there's no improvement there. Another question to you all, I see a lot of people have trouble with sitting with this illness but I don't have any problem with it. There's no correlation between my pain and sitting in other words, usually urinating is what sets it off. Does this rule me out for having this? Otherwise I feel this is the closest illness, as far as symptoms go, to what I'm experiencing. Oh yeah , and also, seeing how erections have been difficult I suppose there's a possibility of my case being artey-related rather than the pudendal nerve. What would be the difference in symptoms if that were the case?

Thanks again for all the help so far everyone!

I had horrible urinary urgency, pain and infections. Then one day my bladder went sluggish with very little feeling. I do have awful pain with sitting, but am like you with having bladder issues. My doctor has me on low dose steroids to reduce inflammation and that has helped some with my bladder feeling. I also take alpha lipoic acid for nerve regeneration and quercetin for bladder inflammation. I think they may do a little something. I just had a sympathetic lumbar nerve block yesterday and that seemed to help bring back some bladder feeling. It helped my pain a little, wish that had been more. My nerves started feeling dry and with the block I could tell blood flow improved. When I sit or sleep I feel like I am crushing my nerves and it would seem blood flow as well. The doctor said the block would bring blood flow in and help with pain. I have more blocks to do and hopefully my pudendal nerve will decrease in swelling and somehow "move" into the right spot, I can hope!


I understand your frustration with all this. I have been quite down myself. Not driving or sitting anymore stinks! My primary doctor actually asked me "your husband is still loyal to you" when I told her intimacy was difficult at best. Talk about feeling awful!!!! I cannot believe a doctor would say something like that. I have chronic pain and a messed up pudendal nerve, sympathy for me would have been nice! I am going to keep trying things though in hopes I will improve. Have you tried a seat cushion for the days you are in class? Just because you feel less pain, may mean the nerve in getting even more compressed possibly? I had less feeling lately and this last nerve block made me realize my nerve is craving blood supply! Who knows, just a suggestion! Don't give up hope, you still have lots to try!

Hey Drew.

Considering your symptoms get worse during stress, it sounds like you should concentrate on relaxing a bit more. I had (and still have) multiple symptoms in the scrotum, penis etc but some of my pain symptoms were lessened considerably by relaxing my pelvic muscles. Until i concentrated on doing just that I never knew how tense I was. I'm not saying this is what you're dealing with but give it a shot. I found that i was tensing my pelvic and abdominal muscles when walking, brushing my teeth, standing, doing the dishes etc. Pretty much all the time. I still have plenty of othe PN related symptoms but I was able to alleviate soreness in the testicles by making a concious effort to relax. Theres a whole line of thinking on this theory in the Chronic Pelvic Pain community. I'm not crazy about a lot of the people who dominate that field online but plenty of PT's concentrate on muscle relaxation as well.

By the way, I noticed that you get the "cold penis" sensation. I get that too but haven't found many others who do.

DrewWapner wrote:Hi Helen, thanks for the response. The only tests the urologist has done was a prostate exam and urine test every time I went in. My urne tests have always come back fine. For my prostate he would say "oh it seems a little spongy" or "it feels better". Not very scientific or conclusive in my opinion. He also had a ct scan done but I've read now that nerves don't really show up in ct scans. And like I said he didn't really pay attention when I brought up possible pudendal damage saying that bicycle saddles typically damage the urethra rather than the pudendal nerve. Seems to me when a man comes to a urologist they just target the prostate automatically. Now that I've tried a few meds to no avail he said "well where do we go from here?"

It is my experience that the cycling aspect of patient history doesn't register with urologists. What you described sounds like a blunt trauma but checking the fit on the bike might be the thing to do. With PN the chronic symptoms can feel quite different from the acute symptoms in the saddle.

One challenge with physical therapy is that a subset treat male patients. Thus far I'm not sure how integrated their approach is with sports medicine; but, I hope they're experienced enough. Good luck.

DrewWapner wrote:Thanks for the heads up violet. Seems like a lot to go through on this site and I'm not quite sure where to start, so does anyone have any good initial advice aside from what redz said? Like medications or vitamins or anything else I should know. Should I start a vitamin regimen right now or avoid certain foods? Should I give the cymbalta a shot? Also are there any success stories, be it from surgery or just gradual healing on its own? Lotta questions...

One problem with SSRIs, such as Cymbalta, is that it can slightly lower testosterone and dopamine levels, which is not an ideal mix for someone with sexual dysfunction. You would do best to hold off on such measures which will not help your anatomic problem. Try lifestyle measure first.

After readjusting my bike at the shop I have seen gradual improvement. After the cycling course of the Wildflower Long Course Triathlon this past May I could not feel anything but pins and needles in most of my genital skin, especially dorsal aspect of my penis. Also pain in my left groin was evident even when standing. It's made huge improvements since.

BTW, if you're ever looking for a sports medicine physician in the Chicago area I would recommend Ben Hasan, MD. While it wasn't a sports medicine concern that he treated me for, in conversation I could tell he was very scholarly. He seemed to be able to adjust therapeutic doses according to forthcoming athletic competition. He was the Team USA physician for the International Triathlon Union World Championships in Beijing last year.

I have a hunch it's more than just pelvic muscle issues. Like I said this all began after my last ride on my bike almost 10 months ago. Plus when I'm asleep I'm totally relaxed yet I rarely get morning erections and when I do they are weak and last only seconds. Also I can't feel them. In other words I don't know if I have one unless I physically check.

It's all a guessing game at this point and I'm gonna roll with either pudendal nerve or artery injury. At least I can rule them out if they are not it, but I think arterial damage can be tested with an angiogram. I'll ask my doctor about it next time.

I was thinking the same thing about Cymbalta, it would only cover the symptoms and worsen my erection issues, but he told me that it causes some type of neuromodulation? I wish I could find a pudendal specialist in the Chicago area because I feel the doctor I have is more focused on prostate issues.

And Elmwood: I've tried reducing stress but I have an anxiety disorder so it's nearly impossible. Logic and relaxation exercises don't do anything. Only benzodiazepenes effectively reduce it, or flat out avoiding the situations.

If anyone can guide me to the right kind of doctor though I'd appreciate it. I no longer ride my bike and haven't in 10 months so I don't know if a sports doctor would be right. Are there any docs that specialize in the pudendal area though?

Thanks a lot everyone

DrewWapner wrote: I was thinking the same thing about Cymbalta, it would only cover the symptoms and worsen my erection issues, but he told me that it causes some type of neuromodulation? I wish I could find a pudendal specialist in the Chicago area because I feel the doctor I have is more focused on prostate issues.

And Elmwood: I've tried reducing stress but I have an anxiety disorder so it's nearly impossible. Logic and relaxation exercises don't do anything. Only benzodiazepenes effectively reduce it, or flat out avoiding the situations.

If anyone can guide me to the right kind of doctor though I'd appreciate it. I no longer ride my bike and haven't in 10 months so I don't know if a sports doctor would be right. Are there any docs that specialize in the pudendal area though?

Thanks a lot everyone

While I can't give medical advice, SSRIs inhibit serotonin transporters anywhere encounteredd in the body. Serotonergic neurons are involved in endocrine regulation, and hypothalamic serotonin is generally inhibitory to sex hormones. To my knowledge brain development continues into adulthood, which is one reason I regret having been duped into SSRIs 19 years ago. I don't see much in-depth endocrinology from those who prescribe SSRIs. Better than tricyclics, anyway.

In theory someone certified in sports medicine would be better able to connect related symptoms to patient history and proceed to the right protocol. But, I'm not certain that sports medicine is for you either. Ben Hasan has his certification from AAFP, where sports medicine is relatively new and maybe not that advanced yet. But, as I say he's a sharp and scholarly individual.

Thanks Maverick, He happens to be in my network and right near me too. I'm thinking if anything he may know a good doctor to refer me to. I wonder if I should just give up on this urologist I have now. It's been 4 months and we've gotten nowhere. He's too concerned with treating by symptoms rather than testing to find a cause first. I know the pudendal artery can be tested for any damage, it's just a matter of finding a doctor who's willing or qualified to do it. At least I could rule it out if it turns out alright because right now I don't know whether it's the nerve or the artery.

Hi Drew,
Just to say that I have never heard of anyone actually having a problem with an artery although I suppose with a symptom of an actual cold feeling, suspecting that pathology is not unfounded. I have heard of veins being part of the problem however in a congestion, varicose way which can then affect the pudendal nerve.
I would think that any artery or blood flow problem would obviously cause an ED problem and cold sensation but I can't think that it could cause bladder issues ?? (I'm not medical however) or pain in an area away from the site of any arterial problem.
I glad that the treatment you are receiving so far is helping and that the Dr you are seeing knows about PN.
Take care,
Helen