UCPPS - Prostatitis, Interstitial Cystitis Forum

I haven't been on for quite a few months, not because I'm cured but because I've accepted the disease and have chosen to not let it define me.

Since I posted last time I have been doing very well considering. At this point I'm eating everything I used to eat, with the exception of coffee. I'm even drinking alcohol, which before was always a big no-no. I can even get away with wine as long as I don't over do it.
The only thing that totally will throw me to the ground and stomp me is pepper. I made the mistake of eating a steak with a lot of pepper a few months back and I missed three days of work. I had a major flare. I avoid pepper like the plague.

I eat mainly fruits and veggies; mixing them up in a bowl with either chicken or shrimp and a home made dressing I use whose chief ingredient is non-fat yogurt. It's delicious. I eat two or three bowls a day. I also include nuts, and sometimes cheese or granola. It's amazing what you can put in a bowl of salad and still have it taste awesome.

At one point, back in 2008 or so, I went without an orgasm for almost nine months because I was absolutely terrified of the pain I would get after the initial ejaculation. Now I have sex/masturbate one or maybe two times per week with very mild pain afterward. If I take a benzo before hand, usually valium, it's almost non-existent.

I started playing racquetball again and walk almost daily for about an hour the last month or so. I've also continued to use my infrarered spa, which has been one of the best purchases for my health I've ever had. I sweat like a pig every time I use it and I'm sure I am really detoxifying my body. I also invested in an excellent air filter for my bedroom and had filters installed for my drinking water and shower.

I take a lot of supplements; Krill oil, Co-q10, Vit D, Vit E, and I think they all help as well.

The only really bad thing that I have to report is that last year I developed Peyronie's disease, which seems to be getting worst every month. For those of you who don't know what Peyronie's is, it's a very rare disease where the sacks that enlarge the penis as they fill with blood become calcified and causes either the penis to bend at odd angles or a banding around the circumference of the shaft. I unfortunately have both, but the latter is worst. There is no cure and it's something that really affects my self-esteem because it causes a definite change to the structure of the penis and my ability to have sex. I'm dating a gal who has been very understanding, but as a man who still is under 50, it's a difficult thing to deal with. I'm curious if anybody else has Peyronie's on this board. There is no doubt that there is a connection between the two, but my doctor isn't sure what it is other than the fact that both diseases are inflammatory in nature.

Anyway, just wanted to drop in and say hello.

S

Strobers,
I am 30 and have had Peyronie's disease for over 5 year now. I have a band around the shaft as well as a band of dorsal plaque. Fortunately no major curvature at this point.
I was diagnosed with Peyronie's after going to a Uro about ED and pain during and after sex.

The reason I am on this chronic prostatitis / chronic pelvic pain syndrome board is that I have many symptoms that are remarkably similar to those with CPPS. I have never been diagnosed with chronic prostatitis / chronic pelvic pain syndrome or prostatitis but am going to see someone at the end of the month to confirm. I would be very surprised if I didn't have a minor form of it.

I too am very curious about any type of connection between the two diseases. Autoimmune and inflammation are the obvious ones.
I highly recommend getting someone to prescribe you Pentox for the Peyronie's if you have not already. I am a member of a very good Peyronie's forum: http://www.peyroniesforum.net/index.php There are tons of men with PD who have tried all kinds of treatments... It is nice to know that there are others out there trying to figure PD out as well.

I have always been a bit anxious, and wonder if that was the catalyst for the 2 diseases... Keep in touch with any thoughts...
SSmith

I do not mean to interupt this post about Peyronie's disease, I think it's great Strobers may have found a forum that could help him through this.

I just want to point out this is exactly the situation I have posted about before, I think there are quite possibly many men that suffer from compounding issues that may or not be traditional CPPS, thus effecting the outcome of studies and aiding to the complexity. I don't know if Peyronie's is secondary to chronic prostatitis / chronic pelvic pain syndrome or chronic prostatitis / chronic pelvic pain syndrome is secondary to Peyronie's. Regardless, lets say PT did resolve the chronic prostatitis / chronic pelvic pain syndrome how could we know if the patient was still feeling CPPS-like pain from the Peyronie's? Or that corticosteroids makes the patient feel better, is that because the Peyronie's is better or the chronic prostatitis / chronic pelvic pain syndrome is?

I remember a patient here had chronic back pain for many years and was in a wheel chair than later developed CPPS, there is no way to tell if it was actually say the cross sensitization of the spinal nerves that caused CPPS-like symptoms and nothing to do with chronically tight muscles in the pelvic floor and certainly nothing to do with the prostate.

My uro said he has 2 current patients that got chronic prostatitis / chronic pelvic pain syndrome immediately following a vasectomy and I have seen posts on this all over the internet. Is this the same chronic prostatitis / chronic pelvic pain syndrome that I have? I doubt it...

Webslave recently posted a study explaining the confusion between ejaculatory duct obstruction and CPPS...

My point is that with millions of men suffering from what has been diagnosed as CPPS, I wonder what % is traditional chronic prostatitis / chronic pelvic pain syndrome if there was such a thing.

My point here is not to have anyone question if they have chronic prostatitis / chronic pelvic pain syndrome or not, only to say that different, completely off label treatments may be worth examining. When I got a rash 2 months ago, I went on prednisone and I am pretty confident I felt better while I was on it...there is not much data to support this and not really recommended for prolonged use. I got a nerve block it worked for 4 hours, diagnostically does this prove visceral pain? I don't know, probably. We should look at this condition on a more individualized bais.

gmccormack wrote:I just want to point out this is exactly the situation I have posted about before, I think there are quite possibly many men that suffer from compounding issues that may or not be traditional CPPS, thus effecting the outcome of studies and aiding to the complexity.

No, properly designed studies filter out these men.

My point is that with millions of men suffering from what has been diagnosed as CPPS, I wonder what % is traditional chronic prostatitis / chronic pelvic pain syndrome if there was such a thing.

There is indeed such a thing, and most men have no other smoking gun conditions.