UCPPS - Prostatitis, Interstitial Cystitis Forum

Yes I did

If it's any consolation, dockuda, many of my symptoms took multiple months to over half a year to clear up any considerable amount, including penile pain and lack of sensation. That's still improving, but slowly. It just takes a lot of time and concerted effort. Don't give up. :)

Thanks for the encouragement

Were any trigger points identified in your case?

Impotence and ED are unfortunately symptoms with a wide range of causes. I have yet to be convinced you have CPPS.

Webslave would you mind informing me why you believe my symptoms are not characteristic of CPPS? Quite honestly I would prefer not to have a diagnosis of uncertain etiology which has an unpredictable response to treatment, such as CPPS. As you probably know, one of the most frustrating situations is to be told your symptoms aren't real and do not quite fit into the textbook description of this disease process. CPPS is a poorly understood diagnosis and has recently gain more attention by urologist and OB/GYns. When I read the post by other contributors, my symptoms are very similar. I am a physician and quite aware of other causes of ED. As I mention before my first bout with this was at age 21, with my presenting symptom being unexplained ED, subsequently followed by urinary frequency and suprapubic pain. At that time I was examined and tested extensively and told that I had nonbacterial chronic prostatitis. I was given a never ending supply of antibiotics. Eventually my symptoms completely cleared including ED until 20 years later. Now I am experiencing the same symptoms without any improvement.

To answer your questions, trigger points were identified, multiple, both internally and externally. Because my symptoms have not improved, does not necessarily mean that this is some other phenomenon. From my own research CPPS may take years to improve. My reason for posting was not to get validation from an expert, but instead establish a dialogue with other sufferers and see if someone has found something that works.

What is real to me, whether or not it is the result of some other organic disorder, is I have suprapubic pain on the left side, worse when my bladder in feeling. I have lower back pain on the left. My internal pelvic muscles are extremely tender and sore when examined. I do not have morning or nocturnal erections. I cannot get an erection with masturbation, because there is no sexual sensation. The tip of my penis hurts when touched or rubs against my underware. There is significant, pin pricking tenderness in my perineum. My libido is absent. When I ejaculate I sometimes experience Post ejac. pain, and when I do ejaculate it is not forceful, it barely dribbles out. I often experience post void dribble often in my underware. My muscle feel week in the perineum.

As I mentioned earlier, I would rather not have this diagnosis, but unfortunately, and in disagreement with your opinion, it's either CPPS or PN.

Dockuda, I don't have a fixed opinion yet on your condition, but I found your initial posts, which made little mention of pain and a lot of mention of ED, to be uncharacteristic of a typical CPPS patient.

Now that you report multiple trigger points, the case looks much more likely.

You have not filled out your signature, so that makes discussing your case more difficult. Please do so.

I do not think this is PN. The symptoms simply do not fit (especially the initial occurrence at 21 followed by a new flare 20 years later).

My reason for posting was not to get validation from an expert, but instead establish a dialogue with other sufferers and see if someone has found something that works.

This forum does not have a large number of active readers, mostly because new members arrive, do their research (read, read, read!), find the answers they need, then move on. Others are lurkers and will never post. Your best bet is to read as much as you can here, and keep trying different approaches. The answers you seek are already here. For example: breathing exercises, stretches, meditation — these may seem trivial to a physician like you, but they have proved to be powerful aids to some men. Not all conditions are cured by drugs and/or surgery.

Do you think that some of the symptoms may be the result of hyper focus on the genital area? I mean, remember when -- an itch a twinge a slight ache would be just that? Yes perineum pain is real but it might be helpful not to associate every twinge and tingle and itch to this thing. I think about my crotch far too much...and it's unhelpful. I realize that. Gotta cognitively fix that.

Caedar, I am learning more about this site and have done random searches today. Fortunately, I have read several of your comments and they all seem informative and enlightening. I was wondering if you allowed communication via e-mail. More so, to learn more about your treatment regimens and stretches, and response to the treatment. I live in an area where it is difficult to find a physician or physical therapist who is familiar with CPPS and the variability of its presentation. I am a physician myself, and hope to use what I am learning to reduce the suffering of those like me. Thanks for your response. My email is dockuda1969 "at" gmail.com

dockuda, certainly. I sent you an email just now.