No diagnosis yet. Need Help.

[walla71]

This started a month ago for me. One night out of the blue, I just felt like I had to keep urinating. Each time I could urinate but it was only a little bit. I finally fell asleep and when I woke up it went away and I was fine for a week. A week later, I had the same feeling where I felt like I had to keep urinating. Since then, I've had a wax and wane of symptoms. I notice after I get this brief time where I feel like I urinate every 5 minutes, it goes away and then I start getting discomfort in my urethra/penis. It isn't pain but more like possible an ache or pressure. I haven't felt completely symptom free except for a day last week. I felt like I was getting better and better everyday and then last Saturday, I had this urinate often feeling again. I don't feel like anything is getting worse but I also don't feel like it getting better either.

I went to a Urologist who performed prostate exam, urinalysis, ultrasound of bladder/kidneys, urodynamics and found nothing. He said my bladder was emptying and there were no spasms or anything during the procedure. Everything else turned out negative. I asked him about IC or Prostatitis and he doesn't believe it's either. He thinks I need to do pelvic relaxation which his nurse can teach but then he said he can refer me to a physical therapist.

I went to get another opinion and this doctor thinks it could be mild prostatitis and gave me a week of Cipro. He said that he didn't think it was anything serious and that he was confident it would go away to the point where he didn't think I needed a follow up appointment.

So I've been reading a lot about diet and pelvic floor exercises and vitamins but I'm just so unsure of what this is at this point that I don't know what to try. Does anyone have similar symptoms or want to try to shed some light on this. Thanks.

[Silas1066]

I get this as well: flare ups in which I can't stop urinating. Usually, something sets it off: diet soda, beer, who knows?

It is all part of the overall chronic prostatitis / chronic pelvic pain syndrome syndrome, and I've been to doctors and urologists about it.

Alpha blockers help ease the flare ups (Flomax, etc.), and staying away from caffeine and alcohol for at least a week.

Cipro is a pretty dangerous drug: it has a "black box" warning on it: can cause nerve and tendon damage among other things.

Not to scare you, but after taking Avelox (same family as Cipro) for a sinus infection I ended up in physical therapy for 6 months, and racked up $40,000 in medical bills.

If you feel ANYTHING unusual, such as pain in the calves, tingling in the hands, etc. go off the Cipro immediately and call your doctor.

[walla71]

Thanks. The doctor only gave me 7 days of Cipro and I completed it 4 days ago. I have never had to take antibiotics before and didn't want this to be the first time but I felt like if there was a chance it would help... Do you feel like your symptoms go away if you stay off of caffeine/alcohol?

I'm trying to correlate the flare up to something dietary and I sort of have been able to but I'm unsure. This all started a month ago when I ate a really spicy dish. Over the last 2 weeks, I've totally cut coffee and other caffeine out of my diet but haven't seen an improvement since it happened again on Saturday. I was feeling much better on Thursday/Friday but on Saturday I had 2 beers and then a couple hours later I had a flare-up. I felt like I had another flare-up yesterday but I had a high level of anxiety yesterday so not sure if this is induced by stress. More crazy things working in my mind but I've had a habit of having HIV scares in the past and these symptoms and other minor symptoms started flying me off the handle over the last couple of days. I started to think that this could be related and maybe I had HIV. I felt like the only think to rid myself of these thoughts was to go and get the rapid HIV test yesterday which if anyone has done before is the scariest thing I've ever experienced. The thought of getting it scared the hell out of me but then after getting it, you have to wait 15 minutes for the results which is agonizing. Anyway this is off topic but it turned out negative.

[Silas1066]

You sound a lot like me: once you start obsessing about some health issue (HIV, cancer, ALS, etc.) you can't relax the mind.

This is a big problem for both of us, and contributes to our urinary/pelvic issues. I am freaked out right now about colon cancer (even though I am 39, and really don't have many of the symptoms), and it is difficult to talk myself down. Back in 2005, I was having all sorts of rectal/GI issues: tenesmus, nausea, loose stool, rectal spasms, etc. Went to the GI doc, who performed a colonoscopy. The minute he said everything was clear save for a couple of internal hemorrhoids, ALL MY SYMPTOMS VANISHED.

I mean everything. I was sick for 6 months, and within minutes everything was clear. That night I went out for Mexican food ...

Now my symptoms are back again ... don't know why this happens.

What you are experiencing has nothing to do with HIV. This is a common disorder for men (and some women--my sister and mother both went through this).

Alcohol is a double-edged sword. It can relax you and ease muscular symptoms, but the next day you might feel like hell. It is a known trigger. Coffee is probably even worse. It is hard for me to stay away from either one.

Working on the anxiety is critical

[walla71]

Yes, we do sound similar. I had the same issue in 2003 with rectal pressure and was convinced I had colon cancer. I had a colonoscopy and he said everything was clear. Soon after my symptoms vanished also. I've had a history of health anxiety that was typically short-lived (a month or two). I was convinced this was another psychological issue but the actual symptoms just seem too real like the urination that I have convinced myself that it is not just psychological. Working on the anxiety is critical and it is a "one day at a time" for me. I hear about others who have extreme pain and consider myself lucky that mine is minor and more of a nuisance physically but severe psychologically. I figure I have no choice but to do whatever I can to control the anxiety. I don't feel like I have any undiagnosed disease that will kill me.

Anyway, in your case, (I read some of your old posts), this has happened to you before so you have an advantage. You know it can go away like it did before after 4 months. Even if it lasts longer this time doesn't mean it won't go away like it did before.

[d_man]

Walla,

HIV is very difficult to get. I have had my scares but in reality, unless you are practicing unsafe anal sex or in a third world country I wouldn't think too much of it.

I think your first uro was dead on. Fortunately, you are only doing 7 days of Cipro. I did a whole month and it was the worst 28 days ever! It messed me up physically and mentally.

I'd go back to your first doc. And then go see the physio he recommends. You're lucky that you found a doc who was stirring you in the right direction and stop obsessing about stds or hiv.I did, and trust me it gets you no where but more problems and pain.

BTW, the sooner you deal with it the faster you will heal. Get help while it's early. Best of luck.

[webslave]

I find it useful to have a supply of benzodiazepines on hand for anxiety flare-ups, which are almost universal in our population group. The trick is not to become addicted. I take maybe one or two pills a month, tops. I usually use a pill cutter on them too, and I only take them when I feel the anxiety (often free-floating) start to climb.

Wikipedia's List of Benzos

[walla71]

Well, the anxiety of this whole thing really has gotten to me this week. I have a couple of real anxious moments during the daytime. I feel like during this time, I have a stronger tickling feeling in the urethra and just today the testicles. I went to see a Pysch on Wednesday and asked him about Benzos but he really felt that due to my state of anxiety, he recommended that we try Zoloft. I'm willing to try anything at this point and I feel that if Zoloft can help during these more anxious times, I have to do it. I've never been on an antidepressant but I feel the side affects... mostly headaches at night which might be the lower dosage wearing off. On a positive note, I feel much better during the evening/nighttime when I'm sitting or laying down. I don't feel much of the tingling during this time nor do I feel it when falling asleep or in the morning. It seems to be more prevalent during the late morning/afternoon hours. I don't have frequent urination or any pronounced urinary symptoms except when I feel the strong tingling which just makes me feel like I want to urinate. I'm going to PT on Monday so we'll see how that goes. I have a prescription for 6 sessions.

I got a PSA test a month ago and just remembered today to call for the results. 0.5 which is real low I guess.

[Jay]

Hey there,

Your PSA is fine. Between 4 and 10 is when the possibility of cancer starts entering the picture, and you don't even have a 1.

As to the remainder of your post, there is nothing wrong with taking an antidepressant. In fact, we wholeheartedly encourage men here to get their depression treated via the appropriate means. Maybe, as the medication comes up to its full effect, it will improve your symptoms along with your emotional state. If not, perhaps your psych would give thought to other options.

Good luck with your PT session. Go into it with an open mind, and remember that it'll likely take several sessions to feel a difference. No Kegel exercises, too. :)

[walla71]

I feel like my symptoms fall more in line with IC as did my Physical Therapist yesterday. Does a lot of what you guys recommend (webslave,carl, Jay) still apply in this case? Is this a lot worse case if diagnosed with IC?

[walla71]

Sorry to ask again but if I am diagnosed with IC which I'm pretty sure will eventually happen, can I follow some of the same protocols listed for CPPS? I'm confused about IC and whether this changes everything about what I've been reading on the forums here.

[we.the.hulk]

did your PT search for trigger points internally? the anterior levator ani can refer tip of penis pain / tingling.

[walla71]

She didn't do anything internally. Perhaps she doesn't do internal PT but I will ask during our next appointment.

[we.the.hulk]

Until you sort that out, I wouldn't jump to the IC conclusion.

[walla71]

Thanks. I have an appointment tomorrow with a pretty well known IC doctor in NYC, Dr. David Kaufman so I'll see what types of additional tests he recommends. I'm assuming a cytoscopy and perhaps a PST.