URO does 180 - scared and confused

[someguy]

Hi Everyone,

I've been reading this board for a while but this is my first post.

I was diagnosed with prostatitis about eight months ago although I suspect I may have had it longer a few years but symptoms were off and on and attributed to UTI and once to a testicle infection from vasectomy (which was cured by 30days doxycycline). So I've seen two regular doctors at my PCP's office both of which upon examination said prostate was very inflamed and prescribed 30-45 day courses antibiotics (levaquin, Cipro) and motrin. My PCP ordered Blood test that showed normal PSA, urine test which found bacteria and ultrasound of testicles which came up clean. I then got referred to a urologist who upon examination said my prostate was inflamed but that the antibiotics I had been on should have killed any bacteria and now I just have to heal. He prescribed Flomax, prelief (anti food acid med) and told me to cut out coffee, acidic drinks and foods and I'd be fine in about thirty days. I followed his prescription and diet with no improvement, went back to him and he being a pampas ass kind of Dr. basically said I must not have done what he said or I'd be fine - it was crazy. I told him that I did everything he said and that if he said to eat dog crap and I'd be cured that I would have eaten it. So I fired this clown and found another URO.

My new URO starts of with exam and says prostate is inflamed. He seems like a decent guy so far, says here is what we have to do. Take Cipro 500mg 2x day, Uroxatrol 1xday and Ibuprofen 800mg 3x day and in 30 days I should be cured or well on the way. So after 30 days I have little improvement and he says well I think we have to stop looking at the prostate because the treatment did not work (as if he never heard of a this common treatment not working) and we have to look at IC so I want to schedule cystoscopy with hydrodistention under general anesthesia. This of course freaks me out but I say okay and we schedule it. In the meantime before the surgery I visit my PCP and discuss with her that perhaps we should try Doxycycline since it worked with "testicle infection" years ago. So she agreed and also had me switch from uroxatrol to Flomax and within a week there was some marked improvement. I went from getting up 4 times a night to pee to only once or twice and testicle pain went from constant to intermittent. So I call the URO tell him of the improvement and he begrudgingly agrees to hold off on the surgery commenting that he can't imagine doxy having any benefit.

So here I am 45 days of doxy and Flomax later and at a partial improvement level, happy that I only get up once a night to pee but still have severe testicle pain off and on and some days where I have that general disgusting feeling in the penis but although horrible it's way better than where I started. I visit the URO tell him where I am at and he says well I think you've suffered enough we have to stop looking at the prostate and look at IC so lets do the cystoscopy with hydrodistention under general anesthesia. He says It's very therapeutic and I'll feel so much better because the bladder will heal itself after this. Well based on all information that I can find about this procedure is that if it is IC that it can help but that generally only lasts weeks at best and sometimes can even make the problem worse.

I am scared and skeptical about cystoscopy with hydrodistention under anesthesia. The fact the 4 doctors felt my prostate and said it was inflamed and the fact that it hurt like hell when they poked it is pretty hard evidence it's a prostate problem. When I question the URO about this he evades the question with a politicians answer "well the fact that treatment is not working means we have look elsewhere" he never says well the inflammation could have been caused by IC.

Any opinions?




Just as a side note I've been taking all the supplements, Quercetin, stinging nettle, lycopene, flax seed oil, fish oil, pumpkin seed oil, saw palmetto, grape seed extract and many others the were ever mentioned as being good for the prostate.

[Sleeper Service]

Actually, it does sound like you're getting better with time. Not convinced it's the antibiotics that are helping though. chronic prostatitis / chronic pelvic pain syndrome is a disease that can hang around for a few years I'm afraid although it generally gets better as time goes by. You may want to explore other options such as supplement therapy, PT, pelvic floor relaxation, etc as I don't think antibiotics are going to help you here.

[strobers]

I think you should forgo the distension. Why? Because for starters in 10% or so of the people who go through this procedure, who are symptomatic, show no sign of IC. Also, in some people it has made them worse, although it has made some better. Personally, I don't like the odds. That's why I never had it done, although one of the clowns, oops I mean uros I saw suggested that I do.

You will always be your best doctor. Nobody knows your body like you and nobody cares about you the way you care for yourself. Uros only know what they know. The majority of them practice what I call Ring Toss Medicine. The toss a few meds out there hoping one will work.

Don't delude yourself about doctors or this procedure. Do what you are doing and advocate for your own health. Eventually, you will find the combination of things that is going to give you the upper hand in the battle against CPPS/IC.

[Canbob]

Someguy - I am no doctor but it sounds to me like you are a member of the chronic prostatitis / chronic pelvic pain syndrome club. You, like me, are one of the older guys in the group but if you read this forum diligently you can learn a lot from these youngsters. Unfortunately, if chronic prostatitis / chronic pelvic pain syndrome is what you have there are no magic pills. Patience, "A headache In the Pelvis" and this forum are your best weapons.

My personal experience with cystoscopy was pretty routine. It was during one of my quick visits to the USA and my uro said he had to do it right then if I was going to do it. I had done no research on the procedure and simply trusted him. There was no general anesthesia and barely any local. My uro put some numbing gel in my penis and away we go. The procedure was very uncomfortable but no worse than sitting on a golf ball every day and pissing fire. Though the doctor said "you are clean, no infection", the procedure itself seemed to give me some relief. I was basically symptom free for a week.

My suggestion is that you do the research and decide for yourself about Cystoscopy. You know your body better than anyone else. Hang in there!

[strobers]

Hello Canbob,

A cystoscopy is actually different than a distension. I had a cystoscopy before and it's really not that big of a deal. Of course, a hose being pushed into ones penis isn't something I would like to do every day, but it serves it's purpose.

Distension is a big more involved. They put the patient to sleep and then pump water into the persons bladder to stretch it out. The only way they can do the procedure is with the patient asleep or there is no way they could handle their bladder being distended to the extent they do to look for the tell tale signs of IC. This includes minute blood hemorrhaging and in the worst cases ulcers. As I stated before, 10% of the time the doctor still does not have the information they need to make a definite diagnosis. That's why it makes more sense to add up ones symptoms and then based on that come up with what might be wrong.

[someguy]

Hey Guys,

Thanks for the replies.

Sleeper Service, I appreciate your input but I'm still clinging to the bacteria theory though since bacteria was cultured in my urine and testicle infection years ago was cleared by doxy. I'm not overlooking other causes and or therapies though.

Canbob, I think as strobers mentioned, you missed the hydrodistension part of what the uro wants to do to me. I'd be much more open to a simple cystoscopy to have a look around but I think he's jumping the gun doing the distension right off the bat - possibly causing more harm for a problem that might not exist. I've read some horror stories about stretching the bladder. Plus this uro is telling me there won't be any pain after the procedure, well I've heard that before - that's what the uro who did my vastectomy said and it was a living hell of giant blue balls and pain for two weeks.

I'm looking for another uro for an opinion before I go for the surgery - I feel like some doctor needs to explain to me why my prostate was so inflamed - no where have I found any mention of that being a symptom of Interstitual Cystitis.

Another avenue I am starting to investigate is my vasectomy being the cause of my problems especially since my first problem years ago was "testicle infection" as my doctor at the time had put it, he asked about vastectomy and said he had seen this before. http://www.vasectomymedical.com/vasectomy-pain.html

[Richie]

I think most intelligent doctors will tell you that if antibiotics don't work in the first few days, that aint the problem.

I was on them for months and they do damage.

Take a muscle relaxer like a valium and if it helps? Guess what, its a muscle issue.

Read some more. You need more education here.

Not a Dr. not medical advice.

[webslave]

I'm still clinging to the bacteria theory though since bacteria was cultured in my urine and testicle infection years ago was cleared by doxy.

Infection can be a trigger for CPPS. It's a mistake (and against the forum rules) — as well as illogical — to go on believing that you still have an infection years later though.

the uro who did my vastectomy said and it was a living hell of giant blue balls and pain for two weeks.

Vasectomy is another chronic prostatitis / chronic pelvic pain syndrome trigger. I've seen a lot of cases posted here over the years.

I feel like some doctor needs to explain to me why my prostate was so inflamed - no where have I found any mention of that being a symptom of Interstitial Cystitis.

If you were told of the inflammation bec. of a pus cell count, that does not mean the prostate itself is inflamed.

[someguy]

I think most intelligent doctors will tell you that if antibiotics don't work in the first few days, that aint the problem.

I was on them for months and they do damage.

Take a muscle relaxer like a valium and if it helps? Guess what, its a muscle issue.

Read some more. You need more education here.

Not a Dr. not medical advice.

Well I have to disagree, a friend had prostatitis about a year before me and he took antibiotics for 6 weeks and was totally cured. No further episodes.

I have taken valium, does nothing but make me sleepy, not a bad thing but did nothing for the pain.

[someguy]

I'm still clinging to the bacteria theory though since bacteria was cultured in my urine and testicle infection years ago was cleared by doxy.

Infection can be a trigger for CPPS. It's a mistake (and against the forum rules) — as well as illogical — to go on believing that you still have an infection years later though.

You misread, the infection from years ago was cured by doxy - doctor said it was infection related to vasectomy. My current problem of about 8 months is what I am referring to hoping that it could be infection. If clinging to hope of an infection which is the only curable cause out of all the possible causes is against the rules well then that is sad and I'll bid you good day.

the uro who did my vasectomy said and it was a living hell of giant blue balls and pain for two weeks.

Vasectomy is another chronic prostatitis / chronic pelvic pain syndrome trigger. I've seen a lot of cases posted here over the years.

Yes it does seem to be a possible trigger but there is also indication that bacteria infections are caused by the unnatural sperm sludge build up.

I feel like some doctor needs to explain to me why my prostate was so inflamed - no where have I found any mention of that being a symptom of Interstitial Cystitis.

If you were told of the inflammation bec. of a pus cell count, that does not mean the prostate itself is inflamed.

I was told prostate was inflamed by rectal exam where they place finger in ass and feel prostate, not only did each doctor say it was inflamed but it hurt like hell - unlike and rectal exam ever before.

[Sleeper Service]

Well I have to disagree, a friend had prostatitis about a year before me and he took antibiotics for 6 weeks and was totally cured. No further episodes.

I have taken valium, does nothing but make me sleepy, not a bad thing but did nothing for the pain.

Perhaps, or maybe it just burnt out. It's a funny bugger, unfortunately.

[webslave]

doctor said it was infection related to vasectomy.

More likely to be post-vasectomy syndrome; google it.

My current problem of about 8 months is what I am referring to hoping that it could be infection.

It isn't an infection. Discard that hope.

..clinging to hope of an infection which is the only curable cause ..

Nonsense.

bacteria infections are caused by the unnatural sperm sludge build up.

More nonsense.

I was told prostate was inflamed by rectal exam where they place finger in ass and feel prostate, not only did each doctor say it was inflamed but it hurt like hell - unlike and rectal exam ever before.

Most likely levators.

[Canbob]

I think most intelligent doctors will tell you that if antibiotics don't work in the first few days, that aint the problem.

I was on them for months and they do damage.

I took antiboitics for a long time as well (8 - 9 months) and have seen this statement that they can do damage in other places. Can you refer me to a site / thread that discusses this?

[rider fan]

Google "Quinolone adverse reaction."