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 Should I get a second opinion? Also cystoscopy concerns... 
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Joined: Thu Sep 14, 2017 1:11 am
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Post Should I get a second opinion? Also cystoscopy concerns...
Background info for my case, core material comes later:. So I've been dealing with this "prostatitis" since March-Aprilish when I had a severe outbreak. I ended up going to a local urologist, he gave me a 2 week course of doxycycline. Sent me on way with a follow up. Here's the catch though, my symptoms were already getting better by the time I got an appointment with him and continued to get better under the doxycycline. I'm not convinced the doxy actually helped though, Im thinking its correlation being confused with causation. Throughout the summer I had very minor to non-existent symptoms and for the most part it didn't bother me enough to go back. But come late August, I had a horrible flare up even more intense since the 1st one. Since this I have been in a constant state of come and go symptoms. Sometimes Ill get a break for a few days to a week but they always come right back. Same doc put me on another 2 week dose of doxy and I could tell no meaningful relief. I went back and this time was put under Cipro, a drug I was scared of due to its black box warnings of tendon issues and other problems. The doc assured me these risks are very low and I was put on a 4 week course. I only did it because I forced the doc to do a prostate secretion culture. It came up with cipro/ Bactrim sensitive coagulase negative staph. I know they say to take all of it and I almost did but I stopped taking it the last 2 days. Why? Because I had wrist pain, blurred vision, and unusual tightness/pain of my calf. My body was giving me lots of warning signs and I was too scared to finish it. I would have got i swapped to another antibiotic for the last 2 days but it was the weekend, everywhere was shut down and I had a 12 hour shift the next day that did not allow me to look into things. Hoping I didn't just breed antibiotic resistant bacteria but I don't want sever tendon/muscle problems on top of this. Also the Cipro's therapeutic effects were negligible if that. Although I did coincidentally have a good 4-5 days after my last dose. But I am beyond terrified of fluoroquinolones and only took it to begin with out of desperation. Also in the past few month, I was given Azo, Bladder Relaxers, and Tamulosin. None of those drugs helped alleviate symptoms in a meaningful way with me experiencing their side effects long before any sort of therapeutic effect. On a side note, Ive been on a prostate supplement, Vit D supp, and Magnesium supp for a while now.


So I revisited my Uro and now he is ordering a cystoscopy. And he reluctantly ordered a CT Scan at my bequest. Did not prescribe me any more meds in the mean time probably based on my negative experiences with them in their side effects and lack of therapeutic effects. I brought up with him other theories I've read about beyond bacterial causes. He even thinks I might have the non-bacterial type by now due to lack of response from antibiotics. But I was trying to tell him about the possibility of pelvic floor issues or pedendal nerve issues. And his reply was I'm doing "too much" research on the internet while acknowledging that there is probably still something going on. He feels the mental side of things magnifies the issues which I agree. The problem I have with him is every diagnostic test, I feel like I'm having to really push him for. And I do feel like he just wants to approach this thing on the textbook way of using antibiotics and saying its a bacterial infection. I would like to explore other possible causes because so far as his interventions have done jack crap. Problem is 98% of the uro's in my area operate under the same group which he belongs to. Although there is another member of the group named Dr. Healey. I saw another user on this website recommend him by name in saying he is thorough. Just curious if its awkward getting a second opinion in the same group or even worthwhile.

Finally I believe there is different variations of a CT Scan that show different things and more in depth. I think he is just doing a standard CT Scan of my pelvis, I wonder if thats thorough enough. Finally for the Cystoscope. He asked me if I wanted to be put under. I passionately nodded my head yes, I do not want to be awake or alert during it whatsoever. Then I found out if I am being knocked out, he would prefer to do the rigid scope on me as opposed to flexible. He says the rigid shows more and it shouldnt matter if Im knocked out anyways. Im scared the recovery will be worse though and it will aggravate my symptoms more. Finally I asked him about insterstial cystitis and if that is a possibility of whats going on. He mentioned it could be but made a comment that indicates that was going to try not to diagnose it. The reason why is if that goes on my medical record, he said it could harm my ability to get life insurance and other things as a young male. And the way he is talking, the outcome wouldn't change anyways. He said a working diagnosis of simply prostatitis is much better from a practical/paperwork perspective. Just curious what the board thinks.


P.S. I've made some topics before, I try to read all replies and I do jot down notes. Just please forgive me if Im slow to respond or infrequent on here. My life has been very busy and Ive had a hard time dedicating time towards this issue. Thanks!


Fri Oct 20, 2017 8:14 pm
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Joined: Mon Jun 19, 2017 11:11 pm
Posts: 39
Post Re: Should I get a second opinion? Also cystoscopy concerns.
In my experience urologists are difficult to talk to and don't want to hear your thoughts and suggestions. My urologist rolled his eyes when I asked him about pelvic floor dysfunction/chronic pelvic pain syndrome. I considere a second opinion but didn't want to wait 4 months to get an appointment with another urologist.

I was hesitant to get a cystoscopy... I got it done, and did not feel any adverse effects from it. I was sedated and had the rigid scope, if you decide to go ahead, get the rigid cystoscopy. Doing this will at least rule out other possible issues like strictures or inflammation of the bladder wall.


Fri Oct 20, 2017 8:55 pm
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Joined: Mon Jun 19, 2017 10:50 am
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Post Re: Should I get a second opinion? Also cystoscopy concerns.
I took 7 rounds of ABX, lastly 5 weeks of cipro which has left me with joint and tendon issues that are getting slightly worse. I won't get a cystoscopy in my current state because I only have mild symptoms. My Uro told me that 500mg of cipro is given before the cystoscopy to minimize the risk of an infection - if you still get an infection it is most likely treated with a fluorochinolone. I don't want to take that risk just to get told "your urethra and prostate seems to be inflamed". Since you took already a fluorochinolone and experienced some side effects (mine kicked in 1-2 months later after cipro) you might consider staying away from them as long as possible.

You missed out the last 2 days of your 4 week course? Doesn't matter. How much did you take? 2x500mg a day? If thats the case, take your magnesium, don't do anything exhausting while you are experience side effects. Hope the best.


Sat Oct 21, 2017 5:27 am
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Joined: Wed Feb 10, 2016 6:43 pm
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Post Re: Should I get a second opinion? Also cystoscopy concerns.
    racebannon wrote:
    In my experience urologists are difficult to talk to and don't want to hear your thoughts and suggestions. My urologist rolled his eyes when I asked him about pelvic floor dysfunction/chronic pelvic pain syndrome. I considere a second opinion but didn't want to wait 4 months to get an appointment with another urologist.

    I was hesitant to get a cystoscopy... I got it done, and did not feel any adverse effects from it. I was sedated and had the rigid scope, if you decide to go ahead, get the rigid cystoscopy. Doing this will at least rule out other possible issues like strictures or inflammation of the bladder wall.


    Why rigid? That is the more painful of the 2.


    Sat Oct 21, 2017 5:53 pm
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    Joined: Tue Aug 04, 2015 6:50 pm
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    If you get one, request that they numb your urethra with lidocaine throughout the whole process. They can use a little bit at a time so the pain isn't so excruciating. Toth did it that way when he did mine, it wasn't bad at all that way.


    Sat Oct 21, 2017 8:59 pm
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    Joined: Mon Jun 19, 2017 11:11 pm
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    I was told that the rigid scope allows for a more thorough examination, biopsies can be taken, strictures repaired etc....not so easy with the flexible scope.

    I was sedated when I had it done, no pain other than slight irritation after which only lasted 1 day.


    Sat Oct 21, 2017 9:03 pm
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    Joined: Wed Feb 10, 2016 6:43 pm
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    racebannon wrote:
    I was told that the rigid scope allows for a more thorough examination, biopsies can be taken, strictures repaired etc....not so easy with the flexible scope.

    I was sedated when I had it done, no pain other than slight irritation after which only lasted 1 day.


    Lucky you. The OP probably doesn't want to hear this but I was in complete agony during mine. I looked at my Urologist as if I wanted to kill her because I was in so much pain and I think she rushed it because I was shouting so much. It took me 2 days to recover from it with as well. Every time I went for a pee there so much pain and bleeding.


    Mon Oct 23, 2017 2:37 pm
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    Joined: Tue Aug 04, 2015 6:50 pm
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    Yeah, honestly, cystoscopy is nearly useless for prostatitis. The urologists who suggest that without running various cultures first (including pcr) need to go back to medical school.


    Mon Oct 23, 2017 3:45 pm
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    Joined: Mon Jun 19, 2017 11:11 pm
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    My urologist said he will never do a cystoscopy unless the patient agrees to anesthesia. I agreed.

    Bottom line is after the scope and subsequent surgery, I am not better, the evil still exists. I still don't know what I have but I assume it's cpps.

    I feel for those of us who suffer with this.


    Mon Oct 23, 2017 8:54 pm
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    Joined: Thu Sep 14, 2017 1:11 am
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    Pritesh wrote:
    racebannon wrote:
    I was told that the rigid scope allows for a more thorough examination, biopsies can be taken, strictures repaired etc....not so easy with the flexible scope.

    I was sedated when I had it done, no pain other than slight irritation after which only lasted 1 day.


    Lucky you. The OP probably doesn't want to hear this but I was in complete agony during mine. I looked at my Urologist as if I wanted to kill her because I was in so much pain and I think she rushed it because I was shouting so much. It took me 2 days to recover from it with as well. Every time I went for a pee there so much pain and bleeding.


    Well Im being sedated so I dont have to worry about being in pain during the surgery. Im just worried about AFTER the surgery. I worry about intense pain, aggravation of symptoms, and bleeding. Im especially worried that it will do long term aggravation of symptoms.

    P.S. Pritesh (sp?), if you got this message in the form of a PM; please ignore it. Meant to do a quote.


    Tue Oct 24, 2017 5:34 pm
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    Joined: Thu Sep 14, 2017 1:11 am
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    Inflamed wrote:
    Yeah, honestly, cystoscopy is nearly useless for prostatitis. The urologists who suggest that without running various cultures first (including pcr) need to go back to medical school.


    Well Im kind of open to doing a cystoscopy to rule out the possibility of strictures. I wish I could be formally tested for Interstitial Cystitis but the doctor was leaning against looking that. The way he came across was the diagnosis of IC would not really help or alter the treatment plan any. Also the way he was talking, the pre-existing condition of IC would hurt me a lot more then prostatitis in terms of buying insurance and conducting other life duties.

    With that being said, the only culture he has ran so far was an EPS a few months ago. He did a DRE on me and got the secretion which I tested positive for Coagulase Negative Staph. I did almost a 4 week dose of Cipro. Now weeks later Im suffering just as much as ever and I did not feel like the Cipro helped me that much when I was taking it. I dont know though. I have no clue what to believe at this point. But I was the one who had to get him to do the culture he did do. This guy seems very reluctant to do any kind of diagnostic work, preferring to just send me home with antibiotics. Nice guy other then that but frustrating.



    Im so frustrated with doctors though. I wish they would take the time to actually understand the cause of the issue, and thoroughly test for the cause. And come up with different treatments based on that testing for effectiveness. I wish they would look outside their narrow little box and explore possible causes such as pelvic floor muscle/nerve issues, autoimmune issues, etc. But they seem so eager to apply the textbook cause of the issue while prescribing the same ol copy/paste textbook treatment of antibiotics...


    Tue Oct 24, 2017 5:43 pm
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    Joined: Thu Sep 14, 2017 1:11 am
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    I was going to say too about the 2nd opinion. Im frustrated and I do want a second opinion. The problem is all advice i have read is DONT get a 2nd opinion in the same medical group as the 1st. The problem is I have no choice. ALL the urologist in my area practice under the same group. And I really want to try this guy named Healey. I saw where one user posted about him and said he was thorough. But I feel like Im not allowed because he is in the same group as my 1st doctor. Afraid there will be awkwardness.


    Also was going to say thank you for the feedback so far to the folks who have replied like racebannon and everyone else.


    Tue Oct 24, 2017 6:14 pm
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    Joined: Mon Jun 12, 2017 12:27 am
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    What are ur exact symptoms? I’ve been having penile pain/burn during urination for 1.5 years now and none of the docs I met suggest cystoscope...


    Sun Oct 29, 2017 8:25 pm
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    Joined: Tue Aug 04, 2015 6:50 pm
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    Post Re: Should I get a second opinion? Also cystoscopy concerns.
    Cheko, I also got CNS in my EPS. Rocephin helped me tremendously. It stopped the acute phase, but didn't stop the chronic phase. However, when I'm on it, the chronic symptoms go away, so who knows.


    Sun Oct 29, 2017 11:03 pm
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