cystoscopy outcome advice

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Hi all

I am looking for some advice.

The story is I have have urinary problems since I was 28, I had a cystoscopy (which I got an infection from) and various urodynamics test and it was decided I had an enlarged prostate, I was offered finasteride but was told I would be a bit of a giniea pig as they had just been released, after a year I came of of them as they did'nt really do much help and I just put up with the symptoms, which were a bad urge to urinate and feeling as if I needed to go straight after I had already been and poor flow, never getting up at night.

Fast forward 28 years and just over a year ago I felt things were getting worse, so went to see a consultant, I refused a cystoscopy and from flow tests he deduced I needed a turp which I refused, so I done some investigation into PAE and discovered my local hospital were involved in the trials, I arranged to see the radiologist involved who said I would need to go see another consultant, which I did, again I refused a cystoscopy but agreed to a ascending urethragram, the result of this was that he thought I had a bulbar stricture so sent me to see a consultant urethroplasty surgeon, he took one look at the images and said that's what he would expect to see in a healthy person, and the urethragram was not done fully.

So back to the second consultant, and I have now agreed to have a cystoscopy under a general, however he is talking about if there is a stricture dilating it and if necesarry putting slits in the urethra whilst doing the cystoscopy, and if I have an enlarged prostate doing a turp, I have said no way to the turp, but if it's a stricture I have been told it only has a 50/50 chance of being succesful and I will always have to dialate, to be honest the idea of that for the rest of my life terrifies me and I would rather consider urethroplasty.

I am really confused as to what to do, I currently feel really good and although I have up to 350ml retention sometimes and I generaly pee 200-300ml but sometimes can pee 400ml. I take a afuzosin only when I feel I am having a problem peeing or get a feeling of not emptying, I have never had a uro infection except for the one they gave me 28 years ago with the cystoscopy, my kidney function is normal.

Surely if I had an enlarged prostate 28 years ago my prostate should now be larger than the 28ml it was measured at in my last scan.

I was also told by the urethroplasty surgeon that I could just live with it, which goes against everything every other consultant has said.

I have stoped drinking coffee, coke and eating chocolate and my syptoms improved hugely when I did.

If I had the cystoscopy being awake and they came across a stricture can it be dilated to complete the cystoscopy without the slitting,

If I was under a general and I had a stricture and it needed slitting can I still have a urethroplasty when/if it fails ?

My first cystoscopy was so painful I would dread being awake.

One thing for sure is I will only go for a PAE and under no circumstances will I be having a turp if it does turn out to be an enlarged prostate.

Sorry this is a bit long winded and mixed up but tbh so am I at the moment.

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  • Posted

    I don't have answers to most of your questions. Looks like your last cystoscopy was 28 years ago. I can tell that its not too bad. Not painful just uncomfortable.

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  • Posted

    I had 2 cystoscopys last year. Was awake for both. Was not painful just uncomfortable. BUT I didn't have structures just enlarged prostate. I would feel the same as you do about procedures. Sounds like you had a couple docs didn't care about your problem the way they should. Do some investigating about your situation and look for docs who can help you. I did have TURP but my doc cares about his patients. No RE or other complications. I was one of the lucky ones.

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  • Posted

    If I were in your postion I would "DO NOTHING".  My situation is much worse (I'm in AUR) and I had a PAE that really didn't help (probably partly because it doesn't really work if you have an enlarged median lobe).  If it gets significantly worse and you don't have an enlarged median lobe, then I would consider the PAE.

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  • Posted

    I had urethrotomy for a thin stricture this past Monday afternoon, went home with a Foley which I removed this morning as directed at discharge.  My strictures developed last year during some procedure for my BPH. (I had GreenLaser, an emergency Foley insertion when I went into acutre retention 2 days later. Then I had another scope, then Gyrus TURP.  Became fully incontinent after the GL, did months of PT to address the incontinence, and the PT didn't help.

    Lost faith in the first urology practice, had my records send to another urologist in another city.  I was unaware of any stricture as none were mentioned in my records.  The second doctor found two thin strictures close to the external sphincter, and did a ballon dilation.  One came back after a month or so, and he did a cystoscopy with a thin instrument.  The experience was night and day better than at the first urologists.  This office had two large overhead screens so I could see exactly what the doctor was seeing, a thin white stricture.  And best of all, I felt absolutley nothing during the procedure.  The numbing gel and the thinner flexible scope and a high skilled doctor made a difference.  (He did not try to pass beyond the stricture to avoid more injury.)

    By this time, I had read about strictures and knew that the success rate for urethrotomies wasn't great.  So I asked, and he said that was true for longer strictures, but he thought the thinness of mine gave it a better chance of succeeding.   So now, I will be waiting for about 10 weeks, and if the stricture repair works, I will have an artificial sphincter implanted.  If the stictures come back, I'm not sure what will happen.  According to my doctor, their location right next to the sphincter makes urethroplasty difficult, and the repaired urethra wouldn't have good blood supply.  Because of that, there's a much greater chance that an artifical sphincter could could have problems such as erosion of the urethra.

    So it's clear that my strictures were caused by one of the many invasive procedures I've had in the last year while under the care of the first urologist (cystoscopies, GL, Gyrus Turp, and several Foley catheters).  It could very well have been from the insertion of the Foley by two young nurses in the ER at 2 a.m. on a Sat night/Sunday morning while I was in agony from a bladder that felt it would burst.

    The size of your prostate should be determinable from imaging.  But, if you are to have another cystoscopy, ask for the smallest scope available.  (I think the most recent one I had was with an 18Fr flexible scope.)

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  • Posted

    Scraggs.  Where are you and who are these people telling you this stuff.  Let me tell you a story.  I got very sick in 2014.  Ended up going to the hospital.  Long story but they asked for a sample.  They already took my blood and told me I had sepsis.  I told the doctor that I don't pee on demand and I did not need to go.  Within 10 minutes I had 2 nurses come in to my room and never said a word to me. Took my pants off and forced a catheter in me.  I did ask many time what is going on.  He pulled out the first one and forced another one in. Never got it in the bladder.  Well I ended up going to see a urologist after.  After some test and then a cystoscopy he found out that I have a stricture right before the prostate just like you.  I have it checked ever 3 months to make sure it good.  Had a urolift done in 2015 all is fine.  My doctor has talked about dialateion it last about a year he said but he told me he would never put a stent in because it will grow into the urethra and if there is a problem they would have to cut it out.  If you are planning to have the cystoscopy done make sure you have in writing that you only want to have it dialated and no stent and no turp.  Why am I telling you this is for your own good.  Once you are out and you sign for the procedure the doctor can do anything he want and say it was for your own good.  I trust my doctor but I alway have him sign a paper that he only has my permission to do what he told me nothing else.  Also if I do have to have a catheter they only can use a coude catheter 14fr or smaller.  It's easier to get in the bladder.  Last year I went into bladder spasm and was peeing blood.  Had to be flushed out after they did it I was still peeing blood.  Within 10 minute of having them do that I was told I had to have emergency surgery to see where the blood was coming from. This was not my urologist  I would not sign for surgery until he sign a paper that my prostate was not to me touch in anyway no matter what the problem was. I told him that I would not sign it and I will lay here an die.  It took him 30 minutes to agree.  It turned out to be 3 bllod clogs around the prostate from my blood thinners.  You have to put things in writing before you have anything done.  It is for your own good.  Take care and stand up for your prostate.  Take care  If you like to talk PM me anytime  Ken        

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    • Posted

      Not to mention some insurance , you need preauthorization. Especially these days. If he does anything he didn't get authorization for, you could get stuck with the whole bill.

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    • Posted

      Yes that is true.  But you also have some doctors that think there god and say you do what I want because I am the doctor and I know better.  I'm sorry your only going to do what I give you permission to do nothing else.  I would not trust that doctor that scraggs saw.  He going to tell him that if he has a problem doing the scope that if he finds a scricture they he's going to put in a stent and then a turp.  No way You do only the scope and the dialation and thats it.  And first of all I would want to be awake to make sure. When I have my cystoscopy done in the office. they use the gel.  It has never hurt just a a little uncomfortable.  But before he did the urolift he could not get the camera into the prostate.  It was closed tight.  I would just want to be safe.  Doctor can do what ever they want after you sign for surgery.  They can say they had a problem and it was nessesary.  Waffalobill I don't know how long you have been on here it going on 3 years for me.  There was a guy on here that went and saw a urologist.  He keep telling him he needed a turp.  The guy told him many time no way.  The man wanted to try a TUNA because it was less of a problem and he had a better chance of not getting retro.  The doctor keep telling him that he was the doctor and he know better.  The guy said no I do not want a turp.  After a couple of months the doctor agreed to do the TUNA.  The man went into surgery woke up in recovery.  The doctor came to him and told him he had a problem with bleeding and did a turp.  There was nothing he could do.  When the doctor was leaving the room the man heard him say to the nurse.  I told you I would do a turp on him  That is wrong.  Take care sorry it's so long.  God bless  Ken     

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  • Posted

    A Sonagram of the prostate & associated area is one of the best pieces of data that you can have..It show an image of the affected area ...the SIZE of the prostate and configuration...and any surrounding images of possible strictures etc..Is your prostate 30gms...130gms ...230 gms?? This is important info.  Holep has been shown to be the best lonjg term (gold) standard procedure to take care of a prostate problem) New procedures PAE etc are good but depend on certain configurations of the prostate. Also, once the gland causes very bad problems ..some go to CIC cath methods...but finasteride, beta sitosterol, flomax, diet etc may help symptoms, but reversing the damage that exists can not be done by supplements . Gat Goren Method for Treatment of Enlarged Prostate is also a very interesting new procedure that may be investigated.

    Good Luck & God Bless

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  • Posted

    Thanks for the replies everyone.

    Some real horror stories.

    My prostate was 28ml last time I had an ultrasound, which was last year, so after 25 or so years it hasn't grown much.

    I have decided that I will be having the cystoscopy whilst awake and if they need to dilate to check things thats ok, but no slicing.

    I can then go from there.

    The urethroplasty consultant I saw said the previous cystoscopy could have been so painful due to my age, apparently the younger you are the harder it is to get past the sphinter.

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    • Posted

      So if I understand you correctly, you have had the following symptoms for 28 years,and your prostate is not enlarged?

      "I just put up with the symptoms, which were a bad urge to urinate and feeling as if I needed to go straight after I had already been and poor flow, never getting up at night."

      Prostate - Perineum pain can cause various problems, surprisingly (ED / shooting pains,...).

      Look at exercising your pelvic area while you are exploring your options; it's free and it may help to minimize your symptoms. 

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    • Posted

      "So if I understand you correctly, you have had the following symptoms for 28 years,and your prostate is not enlarged?"

      According to the latest ultrasound it is no larger than 20 odd years ago.

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