My story, and in need of advice of what to try next

[Andrew]

My symptoms:

So for over three years (I'm 28 years old) I've been getting pain in my perinium, penis shaft, urethra, and rectum.  Sexual activity is usually what aggravates my symptoms, getting aroused will do it somewhat, but ejaculating is really what inflames them the most.  The pains I get in my urethra are often stinging or jolting pains, and they usually center at this spot near the end of my urethra. I get what's called firm flaccid, which means I get stiffness in my penile shaft when I'm not erect, this has actually lessened somewhat over time, but it still happens and varies in severity quite a bit. If I've been masturbated frequently, my penile shaft will feel sore, and sometimes almost like it's tightened. I get shooting or flaring rectal pains (which I imagine is at my prostate,) soreness in my perinium (if I push on that area, it's usually sore, although it varies at times. I sometimes get pain and soreness in my testicles too. As far as urinating goes, it's sometimes hard to start urinating, I often have a weak stream, and it can be very uncomfortable the first 2 or 3 times after ejaculating. It doesn't burn that often, but sometimes when I'm going despite not having much in my bladder, it'll burn. I get pain in my testicles sometimes too, it's not too bad, but sometimes they're sore.

 

I normally resign myself to masturbating every other or every two days. If I do it every day or more frequently than that, most of my symptoms will be inflamed most of the time, I'll feel really sore. Also, if I abstain for a longer time, the next time I do masturbate will be very painful, and when I ejaculate, it's pretty painful. I've abstained over a month before just to see if it could make a permanent improvement, but it just went right back to normal once I started again. Also, even though it's hard to even remember what things were like for me before this nightmare started, the sensation of my orgasms range from pretty much nothing to very little.

 

 

What I've done about it:

 

I've been to two urologists, the first one heard my symptoms and said it sounded like prostatitis (I came in thinking I had a kidney stone due to an inept clinic doctor I saw initially), he gave me antibiotics and an anti-inflammatory, and they didn't do anything. I also got an x-ray and ct scan of my pelvic area, and they didn't show anything. After that, he said I probably had pelvic floor/muscle disorder, and that unless I could get approved for physical therapy, there wasn't much I can do other than sit in warm baths.

 

I did get approved for physical therapy though, and I did two sets of 8 sessions (which were separated by a couple of months due to insurance approval stuff.) My physical therapist was totally cool and looked more deeply into my problems and searched for multiple explanations than my urologist did. I did various stretches and exercises, breathing exercises, he tried to manipulate my tailbone (it's malformed, it points out, but my tailbone wasn't having any change,) electrical stimulation, and the last thing I remember trying was this skin/tissue rolling technique. I had a hard time telling whether these things were helping, because at the same time I tended abstain from masturbation, which if I do, greatly reduces most of my symptoms. I think overall, the physical therapy didn't have much of an effect, but for all I know, I didn't continue it long enough. I told my urologist basically that, that there wasn't any obvious sign of making progress. He basically said there's two more tests left that might tell something, one was a prostate ultrasound, and the other was a cystoscopy. Both showed nothing. After that, he basically shrugged his shoulders and said sometimes **** just doesn't work (phrased more eloquently than that though). So I left with him saying to wait a while, and try seeing another urologist.

 

So I waited a long while, pretty discouraged, but eventually did see a different urologist. Went into his office, told him my symptoms and what I had done, and he just said that I almost certainly have chronic prostatitis. The thing he recommended was a low acidic diet, and I tried that for a while, it didn't seem to have an effect. So I told him that, and I can't remember a lot of the details of our conversation, but he was very reluctant to try more extreme treatment, he didn't seem confident they would do much (like prostate fluid tests or stronger medications.) He said that he thought it could be psychosomatic, which you know, could be true for all I know (I do suffer from depression and anxiety,) but it's also something some doctors say when they don't know what to do. So that was pretty much the end of it (that was spring of this year,) and I've pretty much just suffering through it since then, not doing anything.

 

I also should say that I live a pretty sedentary life, I don't exercise that much, and I spend most of my day sitting, so that probably doesn't help. Being depressed really makes it hard to change that up, but I'm considering seeing a psychiatrist about anti-depressants.

 

I really need some advice on what I should do, because I'm getting so tired of putting up with this, I can't live with this forever. I just got on medi-cal, I don't know exactly how much I'll be covered, but it will probably be whatever the minimum that is require under Obamacare.

[Andrew]

Thank you so much for the response, I really appreciate it.

I think I mentioned this to my latest urologist, and IIRC he reacted like it would be a fruitless effort.  I remember reading something that that test isn't very conclusive because there's naturally different types of bacteria in the prostate, have you heard this? Is there any truth to that?

1.)  I actually have one already, I had to get one to prep for my prostate ultrasound, so that would be convenient.  What is this based on exactly?  How much would I need to do it, and what would the expected result be?

2.)  I've never actually done anything like that myself (just doctors/medical pro's,) but I guess I could try.  How much should I do this?  And by being on antibiotics, do you mean assuming I did the prostate fluid culture and got on the correct oral antibiotics?

3.)  I don't think I'm interested in temporary solutions.

4.)  That sounds like something that isn't practical for me, I kind of have to work within the narrow confines of my medi-cal plan, but maybe if I got help from my family.  Where is the doctor in California located exactly?  And what would either doctor cost for the treatment? How many treatments would it take?

Do you think it's possible that my lifestyle and/or psychological problems could be causing/adding to this problem?

Again, thank you for the response, I don't know why it took me so long to seek advice from a community like this.  It sucks so much that this is such a poorly researched and treated illness.

[Thomas Rodert]

Hi Andrew,

I think that depression/anxiety can definitely make the symptoms worse, but don't let doctors tell you that it's the cause of the chronic prostatitis. I've yet to see, on any forum/website dealing with this condition, one single person who's said that they were treated for depression and it helped them with their problem. Any depression is caused by the prostatitis, not the other way round.

You might try acupuncture: when they do it for prostatitis some of the needles are placed to relax you. I was very sceptical, but found that I did feel more relaxed after, and being relaxed definitely eases the symptoms of any illness. I also tried low dose amytriptyline (not sure about the spelling) for chronic pain. It helped me sleep better at night and this helped too, as lack of sleep just makes you more tired and anxious. Anyway, neither of these can do you any harm, so they're worth a try.

[Andrew]

Thank you for the reply Thomas.

You're probably right, the idea of the cause being psychosomatic sounded very dubious to me.  I did like that doctor though, probably just because he was more straight with me than my previous doctor, who didn't seem to have a clue.

I'm not much of a believer in acupuncture, I tend to think it's an effective placebo at best, so I don't necessarily disbelieve that it could help trick my mind in relaxing me, but I'd rather find other ways if that's the case.

I'm starting to give my protruding tailbone more consideration, I guess because it would be a convenient explanation, but I suppose if you have a malformed tailbone, that could mess with things in that area muscularly and neurologically, right? Anyway, has anyone heard of this being possibly tied into prostatitis?  Just trying to think of things I can possibly bring up to my doctor.