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Trying to decide on HOLEP, not 100% sure I need an operation

Posted , 15 users are following.

John-T
John-T

Hello everyone, I have been diagnosed with BPH about 3 months ago and still wearing a catherter since that time waiting for an HOLEP operation. I have tried CIC and failed, actually passed out in the nurse washroom fell on the concrete floor bangging my head and noze pretty bad. 

I'm not even sure I need an operation, it all started 3 months ago when I felt ill, went to the ER and had my creatine level at 230, at first they didn't know why, then they did a bladder scan and had about 800ml of urine after void, I never had problem urinating, the flow was normal but I was going often and couldn't hold it in longer. After also an echo of the prostate, they told me it was very large and needed an operation. They prescribed me Flowmax (tamsulosin) but it did not do much. 

I don't understand why they did not prescribe me the combo med, Flowmax is considered a a1 Alpha-blocker (helps relax the muscle around the urethra) and another popular drug a 5 alpha reductase inhibitor like Avadart (a dutasteride) that shrinks the prostate, there is also another drug called bethanechol chloride for detrusor muscle contraction for urinary retention, not sure if some of you men are aware of these drugs or tried it as a combo. It seems to me that urologist just wants to operate, they signed me up and make me wait but in the mean time we did not try these things. 

In any case, this coming Monday, I'm going again for another prostate echo and tuesday I have another appointment with a second urologist for green light surgery.

Another thing I wanted to ask your men of BPH suffering, have you tried CTM ( chinese traditional medicine for BPH) according to them, they say that Urologist in our countries dont' understand the prostate and just want to destroy it, apparently they say that the prostate is calcinated and need to remove the heat and restore normal blood flow to shrink the prostate naturally, even ncbi gov sites did some research, herbs such as: Rou Gui (Cortex Cinnamomi) Huang Qi (Radix Astragali) and Chuan Shan Jia (Manis pentadactyla L.) (41.9%), Shu Di Huang (Radix Rehmanniae Perparata) (38.7%), Shan Zhu Yu (Fructus Corni) and Fu Ling (Poria) (32.3%), E Shu (Rhizoma Curcumae), Huang Bo (Cortex Phellodendri), Ze Xie (Rhizoma Alismatis) and Wang Bu Liu Xing (Semen Vaccariae) . Wondering if anyone ever tried these

I appreciate feedback from you all including my friends Ken and Jim

John 

1 like, 63 replies

63 Replies

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  • jimjames
    jimjames John-T

    Posted

    Given your 800ml post void residual, your bladder is probably flaccid and stretched therefore lacking muscle tone. You mention that  your creatine level was 230. Have you been checked for hydronephrosis? This is water in the kidneys caused by urine relfluxing (backing up) because of an obstruction. It should show up on an ultrasound and if your doctor hasn't done this at this point then you are with the wrong doctor. 

    Unlikely the drugs or herbs mentioned will help much given your unsuccessful trial with flomax and your very high post volume residual. Other than an operation, that pretty much leaves wearing a Foley or CIC to protect your kidneys. 

    Have they taken the Foley out to see if you can urinate on your own now that your bladder has been rested? Depending on what operation you might have, pre-operative urodynamic testing after giving the bladder a rest with a Foley can help determine what kind of outcome you can expect from the operation. You mention you "failed" at CIC. If your bladder has been stretched beyond repair, it's possible you could end up with an operation AND have to perfom CIC for life a well. That is what pre-operative testing (urodynamics) will help tell you. 

    You said you fainted during your first attempt at CIC. I almost fainted during my first attempt. To make a long story short, I have been performing CIC for over two years now and at this point it's about as natural (and painless) as brushing my teeth. There are lots of things in life that can make you faint or squeemish in the beginning, but with a little bit of perseverance your body and mind will adjust remarkably.

    I mention this because again you might have no choice but to CIC even after your operation, so why not learn to do it before? It not only will probably resolve your kidney issue but will buy you time to figure out the best operation or way to proceed forward. Wearing a Foley for so long cannot be fun. 

    Lastly, you say that you're not even sure you need an operation. Best advice is to make sure you are by getting second and third opinions if necessary and by doing independent research including discussion groups like this. It sounds you are putting a lot of energy into the alternative medicine/herbal route. It would not be my choice right now given your situation. 

    Whatever you do, your kidneys must be monitored now on a regular basis to make sure you do not do permanent harm. That means periodic creatine testing as well as periodic ultasounds to check for hydronephrosis. The elevated creatine is most probably related to your high PVR, but there could also be other causes. Hopefully your doctor has therefore run other diagnostic tests to rule them out. 

    Jim

     

    • John-T
      John-T jimjames

      Posted

      Hi Jim

      How are you doing, thanks for your great advice, yes you are right a lot of test haven't been done, what I had so far was an echo of the prostate (getting a second one this coming Monday), bladder scan for retention, cystoscopy, blood test, urine test. I will try to talk to my urologist when I go for the echo, I also have another apointment Tuesday with a different urologist a Green Light expert. I will try to get some answers and ask for more test like you said about the hydronephrosis possibility. I understand what you say about CIC and I try to mind myself to do it and that it's ok, I guess I'm just freaked looking at the size of these cath over a foot long going inside my penis. You're right it is a long time wearing a cath for 3 months, I have a valve installed so at least my bladder get to do some work, I will see about removing it either Monday or Tuesday and see how my body will react. I will know more just with the echo for the prostate to see if the prostate is just as big or shrunk with rest and diet change and some herbs. 

      I'll keep you posted

      Hope you are doing well 

      I really appreciate your advises 

      John

  • paul20443
    paul20443 John-T

    Posted

    John..... I’ve been following this blog for about 5 months and have heard a lot about cathing, drugs, and the various BPH procedures.  Bottom line:  drugs may work for a while; for me it was about 2 years.  I did the research on all the procedures (except PAE.   Had not heard of it), and chose HoLEP.  It is the best surgical procedure because; 1) less time in the hospital and a on catheter (less than 24 hours), 2) less bleeding, 3) very small chance of needing a repeat procedure, and 4) they remove prostate tissue (instead of burning it), so they can biopsy it for cancer.  You do need to find an experienced doc to do this.  I too was retaining close to 800ml, and my prostate was 85 grams.  After it was 46 grams.  I had my surgery in January, and now have no problems at all.  Best of luck!
    • kenneth1955
      kenneth1955 paul20443

      Posted

      Hey Paul Glad all worked for you But why should you have surgery if you don't NEED it.. John was fine until he went to the hospital for something else and then he saw that doctor if that's what you can call him.. Also what works for one may not work for another He has alot of thinking to do. I hope one of the 2 doctors can help him KEN
    • John-T
      John-T paul20443

      Posted

      Hi Paul, thanks for the message, much appreciated, yes I hear good things about HOLEP and I'm a waiting list but I'm just worried that even by doing the HOLEP I won't be able to urinate normally, yes I had retention by not any blockage so is the retention caused by the prostate if it is why I could urinate with a normal stream, yes they told me my prostate was huge, but if it was that huge how come I could urinate, so by going for my echo on Monday, I'll know for sure if my prostate is still huge, if it is then it's probably pressing on my bladder causing the retention, if it shrunk then what do I do, I should remove my cath, get some meds and spend a day at the hospital to see if I can urinate and then have a bladder scan to see if I empty or take the med, wait a week with the cath and then remove and try. 

      I'll keep you posted

      ​John

    • paul20443
      paul20443 kenneth1955

      Posted

      Ken...... seems to me getting up several times per night and not being able to wait is not 'fine'.  Using a catheter is no answer either, imho.  I was very comfortable after doing the research and finding one of the top docs in the country on this procedure and trusting his judgement. You're right, 'results may vary' as they say, but I've not heard of anyone on this blog for whom it did not work, in contrast to the various nightmares after TURP & GL. 
    • kenneth1955
      kenneth1955 paul20443

      Posted

      Paul .....All men are diffrent with diffrent problems . John just needs to look into what will help him best. Surgery or not he just needs to get better. That first Doctor messed him up no one should have to have a catheter for month's and have to wait 6 month's or longer to have a surgery that may help him. I hope the other 2 doctors this week will do something for him. Take care Ken
    • kenneth1955
      kenneth1955 paul20443

      Posted

      And for the Turp Laser and Helop procedures I think they should get rid of them. I feel it's a shame that another person can cut away and distroy a mans body like that and call it helping. If it helps so much why do they have to do it sometime 2 and 3 times and still it not right all the time. Glad there are new things out there Ken
  • alan86734
    alan86734 John-T

    Posted

    When you said, "Failed C.I.C" you really meant it, didn't you?  I'm really sorry to hear this, but it is an education for me, parked as I am at the very opposite end of the spectrum. What is your present situation? Did you ever manage to get this reaction under control?

    Presumably C.I.C. would be a valid resource for you only if someone else was with you to help in case of emergency.

    Please keep in touch. I owe you a big thanks for sharing your unfortunate experience with me. If there is any way you think I can be helpful then please contact me. Regards, Alan.

    • John-T
      John-T alan86734

      Posted

      Hello Alan, yes when I said failed I really failed big time by passing out and falling from my chair to the concrete hospital bathroom floor banging my head, teeth and noze, in my bad luck I was lucky not to hurt myself seriously. Still haven't managed to control that reaction, I just didn't have a chance to try again, seems like I have a mental block and can't seem to comprehend sticking those long tube inside of me, could also been the blood that poor out, in any case it's the first time in my life that I passed out and I'm 57. Yes you're right having someone by my side everystep of the way would most likely help or I should maybe wear a football helmet just in case. 

      So my present situation is I still wear a catheter now for the past 3 months waiting for a HOLEP operation, I'm going for an echo of the prostate on Monday so I'll know more then, I'm also thinking on ordering self-cath equipment online. 

      So what's your story

      thanks

      ​John

  • mark23925
    mark23925 John-T

    Posted

    I am a senior and I read on the computer that enlarged prostates respond to low carbohydrate low fat diets , which means no sugar or spices and no alcohol. I tried it because I have an enlarged prostate ,with urinary retention and pain in prostate area when I wake up, because I am full of urine. I drank a ton of coffee all day. So now I just eat boiled vegetables and no coffee and no bread with a little fish and some meat and only water or green tea. and I noticed I void much better and have no pain in morning. I do not know if it will help de-catherize you, but try it. The theory is that infections of the prostate hide behind a film in the glandular tissue which makes it hard for antibiotics to get too, but my have a low sugar, low fat diet, the bacteria are not fed and too not multiply as much. Try it. Are you overweight?
  • mark23925
    mark23925 John-T

    Posted

    Hi This Is Mark, I tried to edit my comment but I could not so I want to explain, or mention something.  The film that I talked about is called biofilm, it is a structure that bacteria surround themselves with so the prostatic infection is resistant to intervention by anti-bacterial medicinals. At the same time the theory goes, the body realizes that there is an infection there and mounts an immunological attack against the prostate and the prostrate grows and is inflammed. What day, they will be able to fiind a method to eliminate the biofilm and allow drugs to penetrate the prostate and eliminate the infection; but until that time comes, they destroy the prostate. I have been putting up with alot. But really the low sugar, low carbohydrate and low fat diet helps alot. Try it anyway.
    • John-T
      John-T mark23925

      Posted

      Hi Mark

      Thanks for your kind messages,

      Yes I agree with you that low fat, no sugar diet will help, I'm on a vegan diet so for me no meat, only grains, beans, tofu, soya, I drink almond milk instead of dairy products, I cut down on cheese as well and no I'm not overwheight I stand 5 11 and weight 190 I workout and try to stay fit, a bit of bellie fat, I'm also taking : saw palmetto, zinc, vitamin D, D3, E, omega3 and eat a lot of pumkin seeds. I also ordered some beta-sitosterol that apparently is also really good at shrinking the prostate, also tried so chinese herbs tea from a TCM doctor.

      So we'll see

      Much appreciated

      Thanks and be well

      John

  • david19922
    david19922 John-T

    Posted

    It is possible to have a mildly occluded prostate, but high urinary retention, due to bladder distension. Unfortunately this is often neurogenic in nature and next to impossible to treat. The first urologist I saw performed a cystoscope and DRE, which I believe led to an erroneous assessment of the prostate size. She insisted TURP was the only treatment option.The second urologist performed the same two tests,in addition to a Trans Rectal Ultra Sound(TRUS). I believe a more accurate prostate size was assessed because of this. The second urologist had me on both FloMax and Finisteride,along with self cath, for six months before performing the Rezum. I don't know if my bladder is still distended but the urinary retention has improved by 90%. Don't be afraid of self-cath. I would suggest using a measurement cup to determine post-void residual volume. Determining bladder size probably requires a CAT scan, but in my case a second scan isn't necessary at this time. The CAT scan was how the second urologist assessed the bladder size, I showed the disk of the scan to the first urologist, but evidently she didn't bother to look at it.
    • John-T
      John-T david19922

      Posted

      Hi David, thanks for the message, I actually just came back today from my prostate/rectal ultrasound. I had a chance to talk briefly with the urologist following the procedure, he told me that my prostate is 100gram and need to be operated, he's a HOLEP specialist, so I seriously entertaining the thoughts of CIC, I tried it once and started to bleed and passed out on the hospital bathroom floor banging my head, teeth and nose pretty bad, luckily I recovered from that with some bruise and nothing more, but I still have this fear of inserting this 16 inches cath inside of me so I have to find a way to overcome this mental block.

      I heard that the Speedicath hydrophilic lubricated is a good choice size 16fr or 14fr, any opinion on that.

      I'll keep you posted thanks

       

    • jimjames
      jimjames John-T

      Posted

      John, lots of info in the several self cathing threads. But briefly that would b my first choice in a catheter and most probably with a coude (bent) tip given the enlarged prostate. People generally start with FR14 and then work down or up depending on their experience. I started with FR14 and then worked down to FR12 which is narrower. Rule of thumb is to use the smallest size catheter that will drain your bladder. In some cases, the FR14 won't push around the prostate and if that happens then you might want to go up to FR16 for awhile as it has more umph behind it. As you gain experience technique wise, you could then try going down in size again.

      Jim

    • John-T
      John-T jimjames

      Posted

      Ok Jim thanks for the great tips on CIC, I did order more samples today 14fr and 16fr now I need a good teacher and try to bypass my mental block about this. 

      I also received message from you that was removed by the moderator it started with high flow obstruction.

      Thanks

      John

    • jimjames
      jimjames John-T

      Posted

      If you missed it in a previous response, ask your doc about using a catheter with a Coude (bent) tip. Easier to navigate the prostate without getting stuck.

      Not sure what was removed by moderator but I did post something warning people not to try the technique recommended by the Indian study because it can be dangerous for people with obstructions such as a large prostate. Maybe the moderator wisely removed all of that, I will have to look.

      Jim

    • david19922
      david19922 John-T

      Posted

      The speedicath is the model I use. It is enclosed in a green plastic sheath,which keeps it lubricated, and it is designed to be discarded after each use. As far as injuring yourself, you might have pressed too hard. At the Cleveland Clnic they have a nurse, who does nothing else but assisting males in choosing the right model and size. The size of the meatus is an important factor and no one likes to think about a nurse determining the size. If I recall correctly they have you try different models to determine the best fit.They also show you about a twenty minute video explaining the catheter. Hopefully your urologist has someone to assist you with these issues.

      Two major suppliers of the Speedicath are Wilmington Medical Supply in Wilmington NC and 180 West in OK. I got the best price from Wilmington and was able to choose the supplier. My supply is delivered monthly by FedEx.

      One feature of the Speedicath is that you can fold the sheath in two without damaging the cath. This makes it possible to carry  inconspicously in a pocket. So good luck, I was very squeamish and fearful when I first started using them, but you quickly learn how far to insert the cath into the uretha w/o causing pain.

    • John-T
      John-T jimjames

      Posted

      Hi Jim, well as you know from last time I tried the CIC I passed out, so my doc is not for the CIC for me and today I just had an echo and my prostate is 100gram and a HOLEP tentative operation date of the 26th of July, tomorrow I have another appointment with a green light urologist which had schedule me for a cystoscopy which I already had from the 1st TURP urologist 3 months ago, so not sure what to tell him, maybe to cancel the cystoscopy since I already done it with someone else and maybe go the route of medication and CIC with him. 

      Thanks

      John

    • jimjames
      jimjames david19922

      Posted

      Hi David,

      Great that they have a dedicated self cath nurse. With the Speedicath, does the nurse show you what I might call the "no touch" technique where you hold the catheter only by the plastic funnel in your dominant hand, then gently pull up the penis and spread open the meatus with thumb and forefinger of your other hand, and then basically drop the catheter in and manuever from the plastic funnel only. With this method in theory you really don't even have to wash your hands because you never touch the catheter or the meatus, although I usually use some sort of hand sanitzer anyway. 

      As to "folding the sheath in two without damaging the cath" this is not the experience of the rest of us who have posted here. My experience is that after an hour or more of being folded the Speedicath stays twisted and this could make cathing very difficult especially if you have a coude tip which must stay lined up. Perhaps with a non-coude tip it is usuable but I will leave that to others since I always use coude tips. But if "foldability" is what you want there are other better choices but overall I agree the Speediczth is the best one out there, or let's say it was for me,  and I tried just about every one.

      Jim

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