Desperate for Help

[DavidinLA]

I have had this @#%*$ condition for almost a year and I'm sick of it! The worst part is that I'm not sure it is CPPS, and I'm spending a lot of money seeing a prostatitis specialist in the L.A. area.

My main symtom has always been penile pain. However, the pain tends to vary. I have noticed abrasions under the foreskin from time to time which are often the source of pain and so have wondered if balanitis (inflamation of the foreskin and/or glans due to foreskin problems) could be at least part of my problem.

The last couple of weeks I've had a great soreness on my tail bone. Is this chronic prostatitis / chronic pelvic pain syndrome related or is it a separate problem?

Although I'm not in pain much right now, I have had low labido/ED the last week and this bothers me emotionally, as it would most men. I do seem to be an especially limp noodle after sitting for long periods of time.

I'm just desparate to get answers so that I know the next step to take. I cannot tell you the how this has ruined my life. I'll do anything to get my health back, but I cannot afford to waste money. I cannot afford the PNE surgery, but I need to know if PNE is a likely cause so I can research this some more.

Thanks.

[webslave]

Pain in penis is a mainstream pelvic myoneuropathy symptom. PNE is a relatively rare (and so far not-widely-accepted in the medical community) condition. You do the math.

[NoMoPain]

I strongly recommend you get the "A headache in the pelvis book" as I believe it will help you get the answers you are seeking.

Of course always see your Doctor first to rule out anything else like an infection or what not. But the odds are at least 90% that the Doc will not find anything in which case the next step is to educate yourself on the trigger point theory of pelvic pain.

The good news is that effective treatment does exist for pelvic pain caused by trigger points.

[winding_road]

I am sorry for what's happening with you. I am in LA too. and it's been also one year I am batteling with this, and other health problems.
you know when I started to have the pain, it was the first serious health problem that I v ever had. and I did as if it was the end of the world and my youth, cause I couldn t accept the fact that shit happens, and to me too.
anyway, the pain became 90% less frequent and the strength of the pain decreased by half.
for me seeing a Physical therapist did show me at least proof that there is something wrong with the muscles. and I should work them out. I am also looking for a good doctor. cause unfortunatley I know Doctors that I won t recommend.

since you r in LA you might wanna speak with David Wise ( Dr.) in stanford. I did this adnd he told me I have to come and get examined.

another advice, don t jump into weird medications or herbals that might only make things more complicated.

[DavidinLA]

Webslave: Thanks for the advice on PNE. A web page I saw was using scare tactics to get people not to delay on the surgery.

NoMoPain: Yes - I'll get the book and its comforting knowing this could help. And I fit the profile of people likely to get PM.

Winding Road: Yes, this is my first health problem also. The pain is not that bad anymore, it's just that this last flare up came with an episode of ED/low labido/loss of penile sensation. It's funny how this could be worse than the pain for most guys. I was planning on making a trip to Stanford in January, but the last couple of months I was staring to believe that this thing was finally fading away. I guess it could not hurt to get examined by someone in Wise's group.

Thanks.

[CppsDad]

David, my terrible chronic pain right now would probably NOT be so chronic if it didn't "fade away" in the beginning. For 2 1/2 years I thought this was something that I could escape by just "taking it easy". With a few months of "time off" from sex, and some advil, the pain got better. Only, it really DIDN'T. During this non-flare-up time, my muscles got worse, more prone to the chronic condition, and slowly led me to my worse flare-ups that have now lasted for 18 months.

There are so many muscles that could be causing you pain that it is worth checking out all options. The other posters are right in saying that if your doctor can't find anything wrong (and even if they DO find something wrong), there is a good chance your problem is related to the muscles.

When you are in pain, is it worse from stress? Do you have anxiety? Is it better in the bath?

Either way - think about it - what CHRONIC condition just goes away by itself. Infections rarely do. Neither does cancer. So, when your doctors tells you that you have a problem that requires surgery, what are the odds that he is right since your pain waxes and wanes by itself? This is the type of pain caused by muscles, stress, and anxiety. So, make sure you open yourself up to all possiblities.

I'm up in Sacramento, and I consider it a blessing to be so close to Stanford. I actually found a PT that works in the clinics with Dr. Wise because I couldn't afford the whole $3000 up front. Being in LA you have no excuse not to take a trip and check things out, even if it means getting 2-5 sessions with a PT nearby.

This was my first real health problem too and I was in denial for too long. After getting in denial, I was too depressed to help myself. Only now after being in the most chronic state was I finally able to commit myself to what it takes to get better. Hard work and a positive attitude.

Michael

[DavidinLA]

David, my terrible chronic pain right now would probably NOT be so chronic if it didn't "fade away" in the beginning. For 2 1/2 years I thought this was something that I could escape by just "taking it easy". With a few months of "time off" from sex, and some advil, the pain got better. Only, it really DIDN'T. During this non-flare-up time, my muscles got worse, more prone to the chronic condition, and slowly led me to my worse flare-ups that have now lasted for 18 months.

There are so many muscles that could be causing you pain that it is worth checking out all options. The other posters are right in saying that if your doctor can't find anything wrong (and even if they DO find something wrong), there is a good chance your problem is related to the muscles.

When you are in pain, is it worse from stress? Do you have anxiety? Is it better in the bath?

Either way - think about it - what CHRONIC condition just goes away by itself. Infections rarely do. Neither does cancer. So, when your doctors tells you that you have a problem that requires surgery, what are the odds that he is right since your pain waxes and wanes by itself? This is the type of pain caused by muscles, stress, and anxiety. So, make sure you open yourself up to all possiblities.

I'm up in Sacramento, and I consider it a blessing to be so close to Stanford. I actually found a PT that works in the clinics with Dr. Wise because I couldn't afford the whole $3000 up front. Being in LA you have no excuse not to take a trip and check things out, even if it means getting 2-5 sessions with a PT nearby.

This was my first real health problem too and I was in denial for too long. After getting in denial, I was too depressed to help myself. Only now after being in the most chronic state was I finally able to commit myself to what it takes to get better. Hard work and a positive attitude.

Michael

I meant that I should try to eliminate as much stress from my life as possible. It does seem that the pain and symptoms are worse after stress. And I do have a high-strung personality.

"Headache in the Pelvis" is something I should make as my next step. I hope the book gives me some excersise that I can do on my own.

Thanks for your advice.

[alprost]

Definitley get your hands n the Headache in the Pelvis book. Penile pain is a common symtom of CPPS, as is pain in the coccyx - both can be caused by myofascial trigger points in the pelvic muscles.

At one, point my coccygeal pain felt like I was sitting on a spike, but after having trigger points inside my pelvic floor released, this symptom has pretty much gone away.