Don't know what I have but could this be CPPS

[Joe02324]

Hi everyone-new here but have been suffering for almost 2 years now. I'm hoping someone here can help point me in the right direction and help answer questions. Here's my story:

I was put on sleep medication (Ambien 10mg) for anxiety and trouble sleeping. Took it for 8years from 30-38yrs. Started experiencing side effects from the meds and tried to get off them. While I was tapering off them after an intense exercise routine I started experiencing pain in the groin area, then frequent urination, constant urge to pee, burning sensation while urinating. I thought I had contracted a kidney stone and went to the ER - they did a CT scan of the pelvis and found nothing. But my creatinine levels through a urination test were elevated. I went to a urologist who did an ultrasound and put me on BACTRIM, gave me some steroids and diagnosed me with prostatitis. The steroids seemed to help a bit, but the symptoms returned and the Bactrim was useless. After no relief the urologist performed a CYSTOSCOPY to check the bladder and said I had a "slightly tight bladder neck" and prescribed the usual ALPHA BLOCKERS (Flomax, Uroxatral) - with little relief/ help.

Went to a second urologist who did nothing but look at my CT scan and looked at my age and said Prostatitis... put me on a 2 month treatment of LEVOFLOXACIN with no help. The symptoms died down somewhat (the pain element) but started experiencing weakened urine stream and still had to deal with the frequent urination (at least once an hour and waking up at night 2x). Second Urologist said "slightly tight bladder neck is not the problem... if you do a cystoscopy of 100 men, 50 of them will have tight bladder neck." I had to stop seeing this urologist because he was too far for me to keep driving to.

In the meantime I've been getting a few strange results from urine exams at my doctor (elevated PROTEIN, sometimes BACTERIA, MUCOUS, and elevated CREATININE numbers in some of the urine tests). My PCP told me to go to a 3rd urologist for answers.

3rd Urologist says he DOES NOT think I have prostatitis because he pressed on the PSA numbers are ok and when he pressed on the prostate he said "you didn't scream." He also did a UROFLOW test and another CYSTOSCOPY and came back and said my bladder neck is slightly narrow - and now tells me that ALPHA BLOCKERS are my only option and to keep cycling through them until I experience some relief and thinks one of them will help. When I press this current urologist what exactly is his "diagnosis" -- he says its kind of like diagnosing "a headache" but in your pelvis-- could be anything, but he says its most likely bladder muscles irritated over time by narrow bladder neck... thus alpha blockers. I have tied Flomax, UROXATRAL, RAPOFLO -- all work about the same--which is to say they don't help much at all.

In the meantime I've experienced some pain in the abdominal (bladder area), what feels like occasional bladder spasms (wave like pain that comes and then goes), occasional pain in the perineum, and frequent urination. The severity of my symptoms wax and wane-- the only thing that I can identify that clearly makes things worse is ejaculation and constipation. I've just started reading A HEADACHE IN THE PELVIS but don't know what to make of it. My questions are:

1. Is there any clear way of determining whether or not I am suffering from prostatitis/ pelvic floor dysfunction? Certain "tests" or "triggers"
2. Do people suffering from CPPS get occasional strange URINE TEST results (elevated protein for eg.?) I'm terrified that this the beginning of a kidney disease brought on by years of taking drugs.
3. When I asked my UROLOGIST about the WISE-ANDERSON protocol he said he never heard of it and dismissed as "sounds like someone is trying to sell you a quack cure." If the Wise Anderson protocol is legit- shouldn't more urologists have heard of it?
4. Could this condition be caused by kidney failure, or maybe the drugs I took?

Any thoughts/ feedback would be greatly appreciated. I don't have a lot of money--but if I knew the W/A protocol was the solution I would gladly fork over the money. It just seems like a lot to for over if I don't even know what I have and if their treatment would work. THANK YOU TO ANYONE WHO REPLIES!! I NEEED HELP!!

[LabMonkey333]

Sorry to hear you are dealing with this issue as well. The symptoms seem to be differ quite a bit from person to person. The urologist you saw seems out of touch with modern research on prostatitis. The urologists I've seen here in Seattle are familiar with Headache in the Pelvis. One urologist at the Polyclinic even recommended I read it. My physical therapist has a copy of the book in her office as well. It's definitely worth a read and most people find relief from reading it and doing the stretches/relaxation.

[WS1234]

and, assuming you live close to a major city, you can find a physiotherapist who provides the same/similar treatment as the WA clinic without having to deal with the travel and the cost.

[webslave]

Answers to your questions:

1. No, it's a diagnosis by exclusion (a diagnosis of a medical condition reached by a process of elimination).
2. A competent uro will be able to tell you from the test results whether or not there is kidney damage
3. If he thinks Wise Anderson are quacks, he is not up to date on the medical literature. I would ditch him and seek another uro.
4. No, and no.

[Joe02324]

Thanks for the replies-- can you guys recommend any procedures/ tests I should undergo to rule out other causes and figure out if this is CPPS. Thus far I've had CTscan, 2Cystoscapies, Uroflow test, Ultrasound, Urine culture-- have you guys had to under go other tests to arrive at your diagnosis? (eg. MRI's, semen culture, prostate biopsies, etc..) Out of all the docs that I've had try and diagnose me I've had the following "opinions/ Conclusions."
Doctor 1: Chronic Prostatitis
Urologist 1: Prostatitis- then changed to I don't know
Urologist 2: Prostatitis (but only saw him once)
Urologist 3: Not prostatitis - its narrow bladder neck.

I have no idea who to believe Uro1 or Uro 3- but Uro 3 my current URO is the one who says he's never heard of W/A and it sounds like quackery. Does anyone know of a URO or PT familiar with W/A in the Los Angeles area?

Thanks again.

[webslave]

Uro 3 is not right. A slight urethral stenosis will not give you post-ejac pain, which is a hallmark of CPPS. Moroever he knows nothing about CPPS if he says Wise-Anderson are quacks. Run don't walk away. I don't think uros will help you further.

In LA, try Mark Litwin if you feel you need another uro.

[WS1234]

I've also heard good things about Jeannette Potts. Pretty sure she works out of San Jose.

[Joe02324]

Am anyone tell me if people with CPPS get abnormal urinary tests back when they do urinalysis? Trying to figure out if this could be CPPS or kidney related.

I've had occasional strange abnormalities show up on urinalysis as doctors/ urologists were trying to figure out was going on (occasional high protein, elevated creatinine, ketones,--an abnormal GFR on one test)... Trying to figure out if what I have is really prostatitis (as suggest by one PCP, one urologist) or something else like a beginning stage kidney disease. Any input would be greatly appreciated. Thanks!

[webslave]

Not related to CPPS

[Sleeper Service]

If the uros suspect a tight bladder neck is causing problems then they should really be offering video urodynamic testing to determine impact and obstruction. A cystoscopy is not enough.

[Joe02324]

Sleeper- thanks for the reply and I will ask my Uro about it- still trying to figure out what's going on but def leaning toward CPPS as everything I've read so far seems to point in that direction as opposed to a narrow bladder neck--my pcp told me that if u do a cyst on 100 guys 40 of them might be diagnosed with a narrow bladder neck so he thinks its prostatitis- but seems to think antibiotics is the solution-- I read your signature-- can I ask how u achieved relief the first time around, what kind of surgery did u have, and what r u currently doing to help achieve relief?